AUTISM- The Good, The Bad, and The Ugly

Happy Thanksgiving!

2010-11-25T08:51:00.005-05:00

Here we are. Once again the holiday season is upon us.

Just last night I was facebook chatting with my cousin. (Join me on facebook, search my name) I told her that I've been a bit emotional and sensitive lately. She asked me if I was feeling that was because of the holidays.

There have been a lot of deaths of family and friends in the last few months, so I have been feeling sad. I explained what holidays are like with David.

Today there is no viewing of the Macy's Thanksgiving Parade. He's not interested. That isn't to say that I will not try again this year. There is no viewing of March of the Wooden Soldiers, although I'm not sure if that movie is even shown anymore. There will be the wrangling of David at Thanksgiving dinner at our cousin's home. We have to make sure that David doesn't put anything inappropriate into his mouth, or try to climb into the oven, or pull items off a table. I am hopeful this year that those things don't happen. I am hopeful that he will sit and play with the toys that I purchased at Target the other day. Maybe he will show some interest in his niece and cousins who are his age. Maybe Mommy can enjoy a cocktail and eat Thanksgiving dinner in a seated position.

Last year, we did not spend Thanksgiving together. Mommy stayed home scrubbing poo. Today I am on high alert for poo. David is wearing a pair of shorts that are belted-tightly!

There are no visits to Santa. No excitement on Christmas morning. David just isn't interested. He does enjoy Christmas music and last year he did not destroy the tree. Last year he did show a curiosity about Santa, as in wanting to see what was under the beard and the red suit.

This is our normal. The new normal. Holidays in the house that Autism created. Our holiday traditions are based on David's mood and behavior on that given day. The holidays are like a bowl of cherries- we never know what we're gonna get.

I keep trying. This morning, during breakfast, I explained what Thanksgiving is- the version that is taught to school children and the version that was taught to me by my native-american grandfather. I explained to David that we are going to the home of his cousins and that we would share a meal with his family- LOTS of family and that it is ok to be with them and it's ok to feel anxious. His Mommy, Daddy, Sister, and Niece would me there too and we're all going to have a good time (fingers crossed).

David's school has been preparing the children for Thanksgiving. I have to give a shout out to Trinity School in Westfield, NJ. They made personalized Thanksgiving cards for the children at David's school and they are wonderful. David normally destroys cards, but we looked at his cards together and he was very gentle with them. He must realize that the cards belong to him because he saw his name. I will have David help me use the cards to decorate with later.

I don't give up. I continue to teach David about the holidays and what they mean. I continue to teach David how we and he should participate in each holiday.

My husband and I attended an Autism workshop two months ago. There was a representative from St. Andrew's Episcopal Church in Harrington Park, NJ They offer a special service twice a month for families with children on the spectrum. We attended the service with was non-denominational and thirty minutes long. There is a lot of movement and music and no one cares if your child is very vocal during the entire service. So David gets to attend church, learn a little something, and we don't have to worry about being asked to leave.

Happy Thanksgiving to everyone!

Ding Ding. School's in Session. Be Careful With My Kid

2010-07-19T09:12:00.002-04:00

David has been in his ESY session at his new school since July 1. We were all excited. A new school. David is officially a kindergarten guy. We got the issue of no car seat and no aide on his school van squared away. It was all good.

On July 9th, one week into school and my wedding anniversary. I noticed, in passing that David's finger was discolored. I noticed this just in passing. I thought it was due to finger paint. My husband and I had plans for the evening so I was busy preparing for that. We had a sitter, my wonderful sister in law, so I didn't have a reason to see David's hand until the next day. On that day, I noticed that his fingernail on his little finger was purple and the nail looked mushed. There wasn't much swelling at all and David did not appear to be in any pain. My husband and I had to attend a memorial service that day so we told the sitter about his finger and she reported that David played and acted normally. On Sunday, I noticed that the purple from his fingernail was spreading upward toward his first knuckle. I decided to go the the ER just to rule out that the finger wasn't broken.

Nope- Finger broken.

David won't wear a splint and the fracture is a clean one. So we're leaving the finger alone. It looks much better already, now that the nail has fallen off.

My husband and I went to the school first thing Monday morning. Of course we wanted to know (A) how our son suffered a broken finger and (B) how our son suffered a broken finger and no one noticed.

There was a field day at school. The only conclusion I could come up with is that David put is hand under a scooter he was playing on. There is a picture of him on the scooter. He is on his stomach and he's pushing with his hands. Maybe David yelped at the initial impact and then kept right on playing. David doesn't respond to pain the way most people do. So, that's possible and understandable in the world of David.

This past Friday, David came home with what looked like a scratch on the back of his right hand. No biggie, David is always touching things and dragging his hands along textured things. His skin was just scratched, skin broken, but not deeply. When my husband gave David his shower that evening, he said it wasn't a scratch, it was the imprint of a gear!

David's book bag was given to another student on Friday, so I don't know if there was an explanation of the gear scratch in his communication book. David's not talking. I checked his school van this morning and talked to the driver. He confirmed what I already knew. David's van has a sliding door. That door is never closed until David is strapped into his car seat and upon exiting, it is not closed until David is away from the van. I didn't see a gear of any type that was exposed to David's hands.

Two injuries in two weeks. Not good. Not good at all.

The Dog Days of Summer

2010-06-27T17:48:00.002-04:00

Yeah, that's gotta be it!

The last few days with David have been challenging to say the least!

He finished pre-school last Wednesday. He starts his new school the coming Thursday.Maybe my own anxiety about the change in school and transportation is making things seem worse than they really are-

Nope! David is off the chains!

I had to take him to Whole Foods this morning. His behavior there was pretty bad. All the months of Whole Food training sessions were completely lost on him today. He was screaming- Imagine if you will a sustained note so high and piercing that your dental fillings vibrate. Imagine the stares of the other shoppers while your kid is in the shopping cart instead of walking next to it, like he's supposed to and your kid is screaming. And barefoot because he wanted to eat his shoes while in the car ( Gross!) and laughing hysterically for no reason.

Good times.

Over the last few days he has (finally) broken the glass in the door of the entertainment center. Had two poop smear incidents while he was securely ( or so I thought) belted into his pants. Peeled a section of wainscoting from my dining room wall. He removed a plastic plate that was screwed into the wall that covered where an electrical outlet USED to be. He threw the toaster from the kitchen counter to the dining room ( Toasters can hold a lot of crumbs) And has sassed his mother!

Yes, I said sassed. With words. Sentences.

David is one of those guys who will have a word or two. Say those words over the course of a few weeks and then they are never heard again.

For about a month now. David has been consistently verbal. With appropriate ( at least in his head) responses to questions.

After the second poop smear incident, I scolded him pretty good. He was upset with me and didn't want to eat his dinner. He told me he wouldn't eat his dinner. " I WON'T EAT"

When he removed the plastic electrical plate cover thing from his wall this morning, the one that was securely screwed into the wall, I asked him how he removed it from the wall.

David said, " I cut it"

I asked him what he cut it with. That question was met with diabolical laughter.

My husband and I searched his room for contraband. No knives, screwdrivers, or other tools were found.

After the toaster throwing incident earlier today, My boy is now confined to his room- Yeah, he's being so punished with his air-conditioning and flat screen TV. When his Waterford DVD ended, he started screaming. I went into the room and told him I see the DVD has ended and I thought he wanted another one.

Me: David, screaming is not the way to ask for something. What do you say when you want more DVD?

David: "I Want My SHIT!"

It's going to be a long summer.

Oh Gawd! I Can't!

2010-06-21T09:23:00.002-04:00

Sigh...

That's David's newest phrase.

See, David doesn't have speech like one would have in conversation. He does use words and phrases from time to time.

About a month ago, I was reading to David-

Me: Ten little Monkeys jumping on the bed. One fell off and bumped his head.

David: Oh Shit!

Yeah, my son is a laugh riot. He says shit when he drops something or falls. He said shit to the bus driver when she wouldn't let him play with the radio.

My favorite Davidism is Oh Gawd, I Can't"

When David is asked to do something that he doesn't want to do, he will scrunch up his face and whine- Oh Gawd! I Can't"

" David, pull up your pants"

" Oh Gawd, I can't"

" David, get off the table"

" Oh Gawd, I can't"

" David, stop eating your shoe"

" Oh Gawd, I can't"

Yesterday he expanded on that phrase. We went to father's day dinner at M-Squares ( You remember them- Maria and Melvin) David ate but was getting antsy. My husband took him for a walk while I ate a lovely dinner and even had an even lovelier glass of Riesling. I went outside to switch places with my husband. The Davids were walking up the driveway and David was whining and fussing. I asked my husband if he wanted to eat. He said he wasn't hungry. I asked David the Younger what was wrong. He said-

" Oh Gawd, I can't. I want to go home!"

David has never spoken so many words at once before. Never. My husband handed me the car keys and told me to load him up. If he wants to go home. That's fine with me.

So we did an eat and run.

We gave him that one. The power of the words. Ask and you shall receive and all that jazz. A five year old controls our lives. We can only let him have so much power. Too much power is a dangerous thing in the wrong hands.

Riddle Me This, Batman.

2010-06-11T12:40:00.002-04:00

About a month ago, David fell while playing. He falls often due to his hypotonia. He was crying after the fall. So, I did a really quick assessment to see what was injured. His left thumb was dislocated.

Me being calm Mom- most of the time- I just said to David that we're just going to make a quick trip to the emergency room and have someone just pop that back in for you. I told him everything would be fine. Just as we're standing at the front door. David looked at his dislocated thumb, which looked like a broken chicken wing, and just popped it back into place. He then took me to the kitchen to get some mixed nuts- his new favorite snack.

Fine, he dislocated his thumb and popped it back in by himself.

Since then, his teacher's have told me that he dislocates both thumbs, (which looks REALLY grotesque) his left knee and his left ankle. He tries to dislocate his elbows, but that's not happening and it pisses him off.

I called the pediatrician's office and explained what was going on. When he dislocates his thumbs it's not at the knuckle, it's in the hand. It looks plain nasty. The pediatrician's response was if he's not acting as if he's in pain, I should leave him alone.

I called the Autism Center at U.M.D.N.J. David has been seen there before. I explained the situation to the receptionist. She told me she's never heard of that before. She placed me on hold to get a professional opinion. The consensus was that what he's doing is a behavior ( NO SHIT SHERLOCK) and "they" were going to consult a "specialist" who would call me back.

I'm still waiting for that call.

So now my days have new phrases. In addition to- Get down, David. Have nice sitting, David. Pull up your Pull-Up, David. I know have- Put your thumbs back, David. And before walking anywhere- Where is your ankle, David?

I don't know why he dislocates his own joints. I don't know why he even can dislocate his own joints. He does have hypotonia. That's the excuse the pediatrician used. Because of his low muscle tone, he is very flexible and can dislocate his own joints.

I want him to stop dislocating his own joints! Why can't he just crack his knuckles like other kids?

I wonder if David weren't autistic, would the docs be more willing to investigate why a child can dislocate his own joints. I tried to tell them that my left knee started to dislocate whenever it felt like it when I was 13. Years of PT and two surgeries later my knee cap knows where it belongs and stays there. Is there some connection? I will find a doc eventually who will figure this out. In the meantime. I and everyone who knows David just has to be sure that all his joints are where they belong at all times.

David fell during gym class and cut his forehead. Right between the eyes. He needed stitches to close the wound. It happened so fast, his falling, that his aide wasn't sure if he fell because he was dancing or he fell because his ankle wasn't where it was supposed to be.

My kid can't be the only one who does this. Can he? If others out there have a similar issue, please contact me.

P.S.- To the person who sent me an e-mail from her mobile phone on 6/9.- I really meant it when I said call me. Anytime, honestly.

I've Never Been To Spain

2010-04-14T17:46:00.002-04:00

I haven't traveled the Pissed-Off Parkway either.

When my son was first diagnosed with Autism. I didn't feel angry. I didn't feel like throwing a pity party. I was numb for a few days. There was so much I needed to know and I didn't have a whole lot of time to learn it. Since David was already receiving Early Intervention services for his global delays, the ABA portion of Early Intervention began very soon after his diagnosis.

What I wanted to know was WHY? Not why me, why him, why us, but why at all.

There was no question that my son was born with Autism. There was no concern that his immunizations caused his Autism because he hadn't received any immunizations prior to his diagnosis. A conception,( I was 42). pregnancy and delivery that were so easy, so unremarkable, should have produced an unremarkable child- right?

I doubt I will ever know the why in my lifetime. I hope someday we have the why. The absolute truth. Until then, the why isn't important to me. What is important is being the best parent and advocate I can be for my son. It's important to keep my head and my heart open to new ideas. It's important to listen to my son, to be fluent in David. He had a lot to teach me.

Autism in the Real World

2010-04-12T12:06:00.003-04:00

Jodi Picoult has a new book, House Rules, that debuted at # 1 on the New York Time's Best Seller's List. Ms. Picoult is a wildly popular novelist. She's Harvard educated so I'm sure she did her homework on the subject of her latest novel.

Her latest novel focuses on Emma, a single mother of two sons. One son has Asperger's and he is accused of murdering his tutor.

Wow! Sounds like a real page-turner.

Ok, Here's my thing. Popular culture is aware of our kids. Grassroots efforts to raise awareness is working and working well. But why is it that when the autistic are represented in novels or in movies or television shows, we only see those who have Asperger's.

Is it because those with Asperger's are "higher functioning?" Is it because they are more easily understood by those in middle America? Because we all know that those in middle America are a bit slower than the rest of America, but they are the group that marketeers most want to reach. Is it because the quirks of Asperger's is neater, cleaner, more socially accepted?

There have been people who ask me about my son. They will sometimes ask me with a hopeful look on their face if my son has Asperger's. When I say no, they might respond with "too bad"

I guess Asperger's is the good kind of autism.

I'm here to tell you people that there is is no good kind of autism. One's life is not defined by where they fall on the spectrum. One's potential is not defined by where they fall on the spectrum.

I challenge those creative types in the creative world. You want to do the world a favor by including families living with autism in your ad campaigns and in your movies? Show it like it is. Show the career woman who had to end her career because the demands of caring for a child with autism and the demands of corporate america don't mix. Show a commercial for pull-ups large enough to fit an 8 year old who just started potty training ( and give us deep discount coupons while you're at it) Show a marriage that crumbled under the strain. Show the life of a neurotypical middle school kid who wants nothing more than to live in a normal house with a normal family with a normal sibling. Show is that!

AUTISM

2010-04-08T10:20:00.003-04:00

A Facebook friend shared this

A- Always

U- Unique

T- Totally

I- Intelligent

S- Sometimes

M- Mysterious

Say What?

2010-04-06T21:05:00.003-04:00

David loves music. He can hear a song once and know it. Every note, tempo, and chord change. It's one of the very cool things about him.

On Saturday, we were in the car. I had the sunroof open and I was cranking the tunes.
Everything was going swimmingly until...

That Rihanna. Her and her Rude Boy. At first I thought it was a catchy tune. Then I checked out the lyrics. I watched David in the rear-view popping to the music, singing the song in his way, and I could have sworn I saw that boy snapping his fingers.

Um, No son. No Rude Boy for you. I am wondering where he heard that song before.

I have to check with his bus driver. She does play music on her bus. The only music I've ever heard coming from the bus was old school Motown. Maybe that's the music she plays at the home stops. Hmmm.... Maybe the bus driver channels her inner Rihanna when there are no parents around.

There are so many Say What moments for parents. We living in autismland seem to have more than our fair share. This school year, we had to request another bus for David because he was injured on the bus he was assigned to in September. He suffered from mysterious bruises on his thighs. Since he's being potty trained, we assumed the bruises were from being held down on the potty during bathroom time. His teacher assumed he was being bruised from being held down at home. Then suddenly David didn't want to get on the bus in the mornings. SAY WHAT?!?

We're in the process of finding an out of district placement for David for the next school year. The process isn't going well. We need to find a place for a severely autistic, sensory challenged, always singing, sometimes throwing, sometimes book eating, five year old boy. Oh- and the school can't use ABA as their maim treatment modality. SAY WHAT?!?

Yep, that's what we're looking for. We visited two schools so far. The first school accepted him for placement. However, that school is not a school for the autistic, but for the multi-disabled. David would be placed in a classroom with 4 other boys who are 2-3 years older and none of those boys are autistic. This school was lovely. It had nice programs and a nice staff, but to me, it seemed like a place where not much is expected. It's a place where students are sent to do their 180 school days. Most of the students there were so challenged physically and cognitively that all they could do was be cared for during the day. That's not the place for my son.

The second school seemed like it would be a better fit. During intake, David was at his worst. Hyper, touching everything and everyone. He bit the principal. I knew when he bit the principal, who was far from amused, he wasn't going to be accepted there. The reasons we were given for the rejection were all based on his behaviors at in-take. Say What?!?

David is fine in a classroom. He does sit. He does attend.He has never bitten a classmate. He has bitten staff members, but they know there is no ill intent with his biting. He uses biting as a way to communicate.

We're now in phase 2 of Find-A-School. I wonder how many say what moments that will bring.

Autism Awareness Month

2010-04-02T10:39:00.002-04:00

It's another April. Another April living with Autism

My son was born in January of 2005. My son was born with autism. He was also born beautiful and funny and smart. He was born to loving parents who just think he is the greatest thing since sunshine.

We still think that way, through the sleepless nights and the temper tantrums. Through the poop smearing, constant monitoring, biting, item throwing, paper-eating, furniture destroying days.

We love our son. We hate that autism has decided to take up residence.

Autism is a neurological disorder marked by challenges in social interaction, communication, and by restricted and repetitive behaviors.

And how!

David is now 5 years old. He doesn't have many words. He is unable to dazzle us with his opinion on whether triceratops or stegosaurus was the mightier of the dinosaurs. He can't tell us if he is in pain, or confused, or worried. We don't hear question after question about the world.

I would give my left eye to hear David utter a question. Just one question.

He can ask questions, just not with words. He uses his body. He uses his hand to ask a question. A look to me with a raised eye brow and the palm of his hand placed on the item he wants to know about. He uses a grunt if he can't touch the item Because of David, I know the origin of the Cadillac emblem ( Thanks, little dude)

Kids like David have to be taught behaviors. Behavior is everything you do.From sitting to eating, to walking in the grocery store. We are now attending a training session once a week to teach David how to behave in the grocery store. We meet a behaviorist at Whole Foods and we are working on getting David to hold onto the cart, not touch anything, and not run away. For neurotypical kids, you can teach them by example and by telling them what is acceptable behavior in public places. For kids with autism, behaviors have to be broken down into small units and taught over and over again until they understand. I figure by September we should have this down!

Today is World Autism Awareness Day. Autism Speaks has asked that iconic buildings turn their light blue on April 1 and 2. Please join them in lighting your home, business, website, or anything you want blue to shine a light on Autism!

"N" Is For Nipple

2010-01-19T20:54:00.003-05:00

David doesn't communicate with words. He uses his handy-dandy- see- if- you- all- can- figure- it- out- method (Patent Pending)

The other day, we were watching one his his Waterford tapes (www.waterford.org)
The Waterford series is really great. David and his classmates love them!

Anyway- We were watching and the letter N was introduced. N-Nose What else begins with N.

David took off his shirt and tapped his nipples.
That's my boy! A wiseguy answer. Original, I give it an 8.

That's how David is. He does communicate. He communicates in the way he is most comfortable with. He communicates in ways that he knows will get him what he wants. He communicates in ways that he knows will make me laugh.

N is for Nipple was funny.

David's way of communicating is not appropriate in the "real" world. People in the real world use speech or sign language. David doesn't have much of either one right now. I encourage him to say words and use signs and not eat or hide his PECS.

I don't discourage the way he communicates now. Is that right? According the all the "experts" it isn't.

But you know what? My son knew that N is for Nipple. He told me with his hands and body that N is for Nipple. He did it until the letter "O" came on. I told him if he can show me a body part that begins with the letter O, I would buy him a car.

He thought that was funny.

Happy New Year!

2010-01-02T13:20:00.004-05:00

It's 2010.

We've been doing the GFCF diet since February 7 of last year.

Has the GFCF diet made David less "autistic"

Nope

Has the GFCF diet made David more verbal?

Nope

The GFCF diet, for David, hasn't provided the miraculous "recovery" that we read about in books and online.

I will say that the GFCF diet has helped with his ADHD issues. He doesn't bounce off the walls everyday anymore. He also has less bowel and skin issues.

I'm so ready to chuck the diet. Sometimes I just want to give the kid a grilled cheese sandwich.

We'll continue with the diet. It's healthier for him, since we have to cook every meal he eats. There are very little preservatives and dyes and artificial flavorings in his diet and that can't be bad, right?

David will be 5 tomorrow. Can you believe it? When I first started blogging I was writing about David aging out of Early Intervention. Now, he's getting ready to enter Kindergarten in the fall. David will still need to be in an autistic classroom. Mainstreaming is not even on the horizon, nor do I think it will ever be. He'll have evaluations beginning this month conducted by the child study team. We'll be having our own evaluations done privately (CYA- cover your ass- at 175.00 per hour for walking in the door thank you very much and did I mention that our roof is leaking?)

During our last IEP meeting, the team felt that while David is very clearly on the spectrum, they don't feel his main diagnosis is autism. They think he has cognitive issues.

More testing, more doctors, more evals, more guesswork, more observations, more, more, MORE.

It's part of our lives. We still don't have "The Answer" Maybe that's because we don't know " The Question" Maybe that's because we don't know "The Cause"

2010- The Odyssey

Merry Christmas!

2009-12-25T12:24:00.002-05:00

It's another Christmas Day. Peace, love and good will towards all.

Last night, I had family over for Christmas Eve nibbles and togetherness.

During times like that. There is always the concern that David will be really inappropriate.

I am happy to say that David behaved VERY appropriately last night.

We ususally have an issue with the table cloth on my diningroon table. He usually snatches it to remove it like a bad magician on The Ed Sullivan Show.( Use Google youngsters.)

There was none of that last night. He didn't remove the table cloth. He did not overturn bowls of food. He sat appropriately, ate appropriately, made great eye contact with family, and he played with his Uncle Melvin and Cousin Keegan.

Today has been pretty awesome too. (I'm not even going to say, "so far") We enjoyed our Christmas breakfast of eggs, bacon and potatoes. He opened his gifts. He especially loved the Transformers PJs from his sister and neice. We watched A Christmas Story and I had a chance to explain what a Triple Dog Dare was. We watched The Yule Log. Isn't it funny how that log burns for hours and hours and the log never diminishes? Must be one of the miracles of Christmas.

Merry Christmas, Everyone!

They're Baaaack!

2009-12-01T19:10:00.003-05:00

The Sensory Issues.

David has had sensory issues. You know, the stimming, the pressure seeking, the need to be naked, the chewing and mouthing of inappropriate objects.

They are back. With a vengence.

For David, the sensory issues come and go. Usually, he'll display one or two sensory connected behaviors over a period of two weeks or so, then they are gone.

Well, now they are here. ALL OF THEM.

His IEP doesn't address his sensory needs at all because the issues have always been short-lived. Redirection and ignoring some behaviors has worked just fine.

Not now. He stripped on the bus today. He's been cramming his body into wherever it will fit. Clothing is optional in his world right now and he is opting out. He can't sit still because he is constantly seeking sensory stimulation. Cramming his body, wanting deep pressure massages of his feet, stuffing the sleeves of sweaters into his mouth so deeply he gags.

He is really having a hard time right now and I don't know how to help him. When he's like this, he is non stop motion. Raw, naked, non-stop motion.

I have noticed that colder weather seems to bring on the sensory issues. He doesn't seem to have any problems in the summertime. Could that be right? Can a change in weather cause this?

What can I do to help David feel better? He really seems bothered. I know some of you have kids with sensory issues. I would appreciate any suggestions.

I'm going to leave a note for his behaviorist tomorrow asking that we address the sensory issues right now in school. I don't think this round is going to go away in the typical two weeks.

Time for David's shower and a nice deep pressure massage.

What Happened To No Assembly Required?

2009-11-28T14:28:00.002-05:00

David throws everything. So I thought I should get a game where throwing is appropriate.

I purchased a Toss-Across game.

I had to assemble the entire game complete with putting on the stickers for the Xs and Os. ( Anyone who knows me,knows I'm not good with stickers)

I did a good job with the stickers. They are all where they are supposed to be. Yay me!

I presented the game to David. The boy who throws everything.
He wanted to turn the pieces to make all the Xs and Os appear. I told him that was cheating.

I had my husband prompt David while I threw my first bean bag at the Toss Across frame. I showed David how to throw the bean bag at the frame to make the Xs and Os appear.

It took a lot of prompting to get David- the boy who throws everything- to throw his bean bag at the game frame.

Mommy- David, throw bean(with full prompt)
(David wouldn't release the bean bag)

Mommy- David throw bean (x3 until he FINALLY released the bean bag)

It went on like this for a while. David was able to throw the bean bag at the game frame on command. However, he was much more interested in throwing his bean bag ANYWHERE than at the game frame.

Sigh...

Happy Thanksgiving

2009-11-26T18:36:00.002-05:00

..Not for the squeamish or those with a full stomach.

We ALMOST made it out of the house to spend Thanksgiving together. Almost. It was so close.

I was downstairs packing David's bag of essentials and taking his toys to the car.

David was left unattended. He likes to be naked again.

He was naked and pooped. He was naked and pooped and both David and his Dad tracked the poop from David's bedroom to the bathroom. The upstairs hallway is carpeted. So...

I spend my Thanksgiving alone. Scrubbing poop off the carpet from the bedroom to the bathroom and scrubbing the bathroom since there was poop in the tub from washing the poop off David and my husband's shoes. Gotta do poop laundry to wash the poop off the blankets and the bathmat and a towel or two.

The thing is: David already pooped today! Thought we were safe from any poop accidents.

Do I sound a bit miffed? A wee bit. I'm not upset with David. When ya gotta go, ya gotta go.

I'm just wondering what my husband was doing while I was packing David's stuff and putting the toys in the trunk of the car?

Just saying.

I guess I was supposed to pack the stuff, get David dressed, and keep catastrophe and poop from striking.

My bad. I wasn't fast enough today. Shit happens, right?

Holidays are. well, I don't even have a word for what they are now.

We can't take David everywhere. Like last Christmas. I spent the day with my husband's family and The Davids spent the day at home. My sister in law hosted Christmas dinner and her Nativity Scene and her festive decorations wouldn't have stood a chance against David The Destroyer. When we do attempt a day as a family at a family function, one of us has to be by David's side at all times to be sure he doesn't destroy anything, put something into his mouth that he shouldn't, or try to climb into an oven (He has done that) It's not fun. Trying to get him to sit at a table for a meal is still a huge challenge. Trying to get him to sit period, is still a challenge.

He's probably fine now. He has a new set of building blocks. 150 pieces with a shape sorter as a lid to the canister that holds the blocks. He really likes shape sorters. I also packed the old time favorite Barrel of Monkeys. I'm sure someone is showing him how to make the monkey chain between bites of plastic monkey.

Gotta go. Poop laundry needs to go into the dryer.

Happy Thanksgiving!

Geese and Me

2009-11-15T09:36:00.002-05:00

I enrolled David in a T-ball class. Our town has recreational opportunities for children with developmental and physical disabilities. This is the first time David has been old enough to participate.

The T-ball class is held on Saturday mornings in the gym at David's school. I thought that is perfect. He would be in a place that he knows so we wouldn't be spending a large chunk of the first class with him taking the time to explore every nook and cranny of the space.

Getting David to participate appropriately and listen to the coach has been a challenge. David prefers to run around the gym at all times instead of hitting the ball from the T or sitting quietly in a circle while the coach gives directions on the next activity.

There are teens who volunteer with the program as aides for the kids. The parents are supposed to retire to the parent area so the kids can participate independently.

During the first class. I retired to the hallway so I could peek into the gym to see what David was up to. His poor aide didn't have a clue what to do with David. So, I went back into the gym and explained to the aide that David had autism and it is difficult for him to attend and have contact with people. So I showed the aide what to do. How to physically make David sit when he should sit and hit the ball when he should hit the ball.

I think that poor child went home with a back ache.

Over the weeks. I noticed that the aides shy away from the door when David arrives. I'm not hurt by that. I totally get it. David has to be re-directed often. He doesn't make eye-contact with the aide. Except when he wants to be chased around the gym. Because of this, I have been working as his aide. Which is fine, I guess.

Yesterday, David did have an aide, after the coach noticed that David didn't have one. We had a nice young man named Dale. Dale has seen David before and he did a really good job being a co-aide. I still hung around to help David play catch with Dale and to keep him David from bolting around the gym at full speed.

Towards the end of the session. The coach had the children sit and then take turns hitting the ball from the T and then running the bases. Dale took David for his turn and helped David run the bases. David then sat between me and Dale until it was time for his next turn at bat. The children had several turns each. The coach then asked who hasn't had a turn in a while. David stood up, walked over to the coach and said, "Me!"

I was floored. The coached asked if David just said, "Me" I told him it sure sounded like it. David took his next turn at bat complete with praise from the coaches and other aides for saying, "Me!"

Later in the day. My husband, David, and I were riding in the car. We passed a park where David and I attended a fair a few weeks before. I parked the car and we had to walk past a pond that had ducks and geese sitting on the grass around the pond. David wanted to walk over to the geese. I let him and David touched one of the geese and gave it a little pet.

As we were passing the park, I told my husband that this was the park where David saw the ducks and petted one.

From the backseat, David corrected me. " Geese"

I told David I was sorry, he was right. They were geese.

Two simple words made my whole day, shoot, my whole month- Geese and Me. For most parents of an almost 5 year old, this doesn't mean anything. For me, it's like hitting the lottery.

By Invitation Only

2009-11-13T18:48:00.003-05:00

David is in his own room again (and Finally, I might add)

My husband is out running errands and I wanted to spend some time with David. In his room. Playing with David in his room.

I went into his room and sat on the bed. David took me by the hand, helped me up and escorted me back to the office.

I wasn't invited.

I thought that wouldn't happen until David reached adolescence. That's how it was with my daughter. The sign that said. " Keep out, this means YOU!" appeared on her bedroom door one day and I accepted the fact that my baby was getting older and she needed her space and privacy.

David keeps peering into the office to see if I'm ok. Yes, Son. I'm fine Thankyouverymuch. I'm just feeling a bit rejected right now. By a four year old, thankyouverymuch.

On the one hand, I am feeling slighted- I'm the Mom, the light of your world. What the heck, son? On the other hand, I'm glad that he can now communicate to me when he wants me in his world and space and when he doesn't. There was a time, not so long ago, where no one was ever invited into David's world. Well, maybe for the most primal of reasons-food. And that's still true. I was his best friend at dinner time.

Whatever Works!

2009-10-28T22:35:00.003-04:00

David was home today with The Fever Virus.

He's had it before. Sudden high fever of 104 or better with no known cause. So we were home today. Daddy will be home tomorrow.

David has this annoying habit of throwing things. While it's not annoying in a 6 month old infant, in a four year old, it's just plain wrong.

I fed David some breakfast and I needed a moment of privacy. David was in his room. My husband- McGuyver- removed David's bedroom door and replaced it with a homemade door that locks from the outside with a bolt and it about 5 1/2 feet high.

While I was partaking of my private time, I could hear thuds and crashes and thuds and crashes. I knew David was throwing his toys over the door and into the hallway.

I was not prepared to find EVERY SINGLE TOY, PLASTIC STORAGE DRAWER, and PLASTIC STORAGE BUCKETS in the hallway. The only things that remained in David's room were his bed, his dresser and the wooden frame that the storage buckets and drawers slide into.

The pile of toys was higher than the door. I couldn't get to the door. I had to clear a path. I cleared just enough room so I could get to the door and slide my body into the room.

I asked David if he did that. He just gave me his Mr. Innocent look. I took him by the hand and let him see the mess he made.

He looked and just said "Oh"

I made David clean up the mess. Every toy, every piece of David paraphernalia. He clean up.

He has these clear plastic blocks with the letters of the alphabet on them. The letter B has clear balloons in the box and so on. When David picked up a block with a letter on it. He identified the letter and then looked at me oh so sweetly, waiting for his praise.

The praise was short-lived, immediately followed by- Keep going- Pick that mess up NOW!

I'm so happy that David was able to read the cues that he messed up big! Yea David!

I'm glad that he read my social cues. My look of extreme dissatisfaction and disappointment.

Yea, again!

He didn't throw another toy at home for the rest of the day.

His visit to the pediatrician was another story. The receptionist was beaned in the head with a flying firetruck.

Sorry. Really.

When we arrived home from our doctor's visit. David didn't want to go to his room. He wanted to be in the living room, where is trampoline is.

Yes, we have a trampoline. His behaviorist thought having one would be a good idea. Using it would allow David to expend energy and allow him to jump on something appropriate.

She didn't mention that he had to wear clothes.

David did have a fever. So I allowed him to sit in his pull-up. He sat quietly and watched Elmo while I made a business call.

I'm holding in a queue, for what seems like a mandatory 45 minutes. While I'm holding I peek around the corner and see David, butt naked, jumping on the trampoline watching his wink wink and dook dooks just flopping in the breeze.

Is it appropriate to have a four year old naked jumping on a trampoline? Well, probably not, but it allowed me to check the status of a dozen open invoices for work. So it's all good.

I also took advantage of the naked time to potty train. I told David if he wants to be naked, he has to use the potty. He didn't' do anything in the potty, but he went to be pottied without a fight.

I'm all for whatever works.

Um, Yeah.

2009-10-13T20:55:00.003-04:00

So the school year is in full swing. School for most New Jersey children starts after labor day.

David has two classmates right now. Nice, right?

His team decided that we, the parents, needed parent training to help David be more independent and to redirect undesireable behaviors.

What that really means is that for every waking moment that David has, he can't be alone. Every waking moment has to be filled with an activity plus potty training every 15 minutes.

So, for the last month, it's been ALL DAVID ALL THE TIME. Like- it wasn't before. Now, however, now we're in Defcon 4.

We're tired. We're all so very tired. I think we're tired of each other.

We've been hyper attentive of David for about a month now,

During this time. David has been successful in using the potty about a dozen times and once at school.

We have been able to remove the bindings that kept our dining room chairs attached to the table so David can't throw the chairs and use them as playground equipment.

David is using more self help skills. He can wash his hands and pull his pull-up back to the on position after toileting. David is back in his own room (Can I get an AMEN?!)

David is more verbal now too. He's using words and phrases with regularity and he is using his words appropriately. He says "okay" when asked to do something. He says "oh-oh" when he drops something. His teacher was too slow to begin the end of day circle time and he told her, "Let's go!" He says "hi" and "bye" sometimes.

David is also mastering his ABA program tasks and moving onto others.

Yes, there has been progress since we have been adhering to the parent training portion of our therapy. Progress, discovering, frustration, and anger.

Did I mention anger?

Why yes I did.

Like a lot of married couples, my husband and I argue over the same issues over and over. He doesn't feel appreciated, what I refer to as "Needing a parade in my honor because I washed the dishes" syndrome and I feel like I do more than my fair share for David and our home, What he refers to as "What the hell are you talking about?!" This argument turned really ugly really fast. It was one of those arguments that either makes a marriage stronger or ends it. I don't think either of us knows where we are right now. We're just doing the one day at a time thing.

We're tired. Living with autism everyday is exhausting and it doesn't get easier as our son grows older. He has more needs. He needs to be taught more skills to shorten the gap between him and his neurotypical peers. He has to get ready for kindergarten next September. He needs to be potty trained ASAP. On and on, everyday, every waking moment of his day. There is no time off for holidays, or illness, or muscle aches and pains. Sometimes it's one step forward and two steps back. The frustration wears me down. The slowness of mastery of tasks wears me down. The never-ending, all consuming world of autism in which I live wears me down.

Then there are those moments when I know all that hard work paid off. The way David looks at me and smiles when I come home from work. The way we can now play with building blocks while we listen to music. He used to chew the plastic blocks, clamping down on them so tightly that they couldn't be used to build with. He can invite me into his bed for a cuddle and say "bye DAD DEE" as he's heading out the door to run errands with me.

It's a life that's good and bad and ugly. It's a life of challenge and reward. It's a life of surprises and IEPs and teams and school buses that are too big.

It's a life and it's mine.

This and That

2009-09-11T21:18:00.002-04:00

First there's this:

David has made incredible progess with his ABA programs. He has mastered 4 trials in 3 weeks. Prior to that, David has not mastered any trials in 2 years,

And that:

The therapists who made this happen aren't available this school term.

This:

David is talking and babbling much more lately.

That:

His favorite word is "Oh-Oh" and he means what he says.

There has been a big change in David over the last two months. He's more mature and he is developing new skills. What I'm afraid of is what I call the plateau effect. There is growth and then he'll reach this plateau and just stay there for a very long time. He's more connected with the world (GFCF diet or maturation?) and he has more interests. So maybe that will encourage him to stay the course and live in the world and welcome us in it.

A new school year has started. David's last in pre-school. So I'm sure this school year will be all about kindergarten readiness. I often tell David that he is a big boy when he does big boy things and how he does a really great job doing this or that. He now prefers showers to baths, books with words instead of just pictures with a word or two. He likes to introduce me to new things, especially new music. Kings of Leon is now a favorite thanks to David. He loves long drives while we listen to the radio, which isn't too painful with the current gas prices.

I've been blogging for close to two years. David is autistic, but he is the greatest son a mom could ever have.

Bumper Stickers and Du Du Stew

2009-08-19T23:40:00.002-04:00

On Sunday, David was crying and writhing in pain. Since he doesn't speak, he couldn't tell us where the pain was. He was in a lot of pain. My husband and I decided to take a trip to the ER to check for the more obvious and common reasons for pain in a four year old. On the way to the ER, the pain went away. We decided to go for a car ride just in case the pain came back.

The pain did come back, for a short period of time and there have been no further episodes. David saw his pediatrician the following day and everything is fine. So my theory is that a fruit smoothie and Daddy's Du Du Stew had something to do with it.

Du Du Stew is one of my husband's secret recipes. It contains beans, greens, garlic, onions and turkey meatballs. It's tasty, and oh so high in fiber! Yum Yum.

While we were riding around on Sunday, we passed a store where my husband purchased magnetic Autism Awareness ribbons for his car. Since I now have a car, my husband stopped so I could get a ribbon too.

When my husband returned to the car, he was angry. I've known this man for 32 years and I have seen him angry 3 times, Sunday included.

He told me he asked the clerk in the store for Autism Awareness Car Ribbons. She said she didn't have any of those in stock, but she had Down Syndrome Ribbons.

Long story short, my husband tried to explain to the clerk that Autism and Down Syndrome are not the same thing. The clerk thought since both "make kids really retarded", they were connected. My husband tried in vain to educate her. He declared her un-educatable. He's a teacher. He would know.

Normally, my husband is very patient and he does a very good job explaining to people what Autism is and isn't. I think he was offended that someone would think that his son is "retarded" That's such an ugly word anyway.

It wouldn't surprise me if my husband went back to that store and tried to talk to the clerk again.

I'm a Working Girl!

2009-08-05T20:11:00.002-04:00

No, not THAT kind of working girl!

I started a new job outside of the home on Monday. It's a full time position and so far the transition from stay at home to out in the world has been ok. I do what every other working outside- of- the home mother does. Plan, execute, and deliver.

David had a great day at school on Monday. His teacher reported that he was really focused and demonstrated several independent skills. I thought that was wonderful. He has a sitter who comes for a short period of time during the day. It's during the time that he is with his at home teacher and for a short time after. Since my husband is a teacher, we won't need a sitter for an extended period of time during the school year. I thought the change would cause him some anxiety and maybe even some regression. Nope. David is doing fine and Momma worries to much.

We had a nice surprise yesterday. Apparently, The State Of New Jersey received some monies which were earmarked for families living with Autism. We received a very generous and most welcomed check.

New Jersey has also passed a bill that will become law very soon which requires insurance companies to cover autism related services. That's a beautiful thing. Typically, insurers would not cover speech therapy for an a child with autism who has never spoken because the services weren't considered "restorative".

Yes, a beautiful thing.

David Never Ceases To Amaze Me

2009-07-30T00:10:00.002-04:00

There have been times when I've felt frustrated with David.

Mostly it's due to the fact that he's a wise guy. He knows all the tricks to avoid work and he uses them.

He is attending the extended summer session at his school. He gets home at 1 PM. He has a home ABA session from 1-2:30.

While his teacher is here, he's often so very very tired. I know it's rough,right? His school bus comes at 8:15 and except for his lunch break, his day is very structured from 9-2:30.

It sure is funny how energized he becomes as soon as the teacher leaves. Then, except for his dinner break, it's a non-stop party.

His classroom teacher has been reporting that David hasn't been happy about working lately. How it's very difficult to keep him motivated and focused.

I hear ya Miss Liz.

I often wonder how much David "gets". He's been ABAed, OTed, PTed and I feel he should be farther along than he is.

Whatever that means.

Tonight, I fed David his dinner. Yes, I said fed. I'm getting over a nasty summer cold and I just didn't have the energy to encourage his independence today. Anyway-after he was done with the meal, he made a mad dash to the entertainment center and he was furiously trying to climb it and get something that was sitting on top. He was pretty persistant. I asked him what he wanted. He took a pillow so he could scale to the top. He was after a little white binder. I thought the binder was empty because I never noticed it before. Inside the binder was a picture of his peg board that he uses during his ABA sessions. On another page, there was a written word.

That word was "finished"

I had to dry my eyes after that one.

Yes, he gets it. He just doesn't need me to know that all the time.

All The Kids Want To Do It

2009-07-21T23:04:00.002-04:00

About a week ago, I was in the shower an hour before David was due to arrive home. While I was in the shower, I heard a child "singing" the way David does. It was so similar that I could have sworn it was David.

I was flipping out. Did I misread the clock? Was his bus outside and I was in the shower ?!?

I got out of the shower and went to the window. I dropped my naked body below the sill and opened the window. I didn't see David's bus. I could still hear the child singing and it sounded very close by. I peered out of the window as much as I dared while still preserving my modesty. I didn't see anyone, but the singing continued and it was so close.

I then thought that there was another autistic child in the neighborhood and they live really close.

I told my husband what happened when he came home that night. He wondered which house the child lived in.

Tonight, my husband asked me if I remembered the singing incident. I told him I did. He told me he discovered where the child lived.

I was excited in a bittersweet way. An autistic neighbor, Yay! An autistic neighbor, Oh no.

He told me the "singer" lived next door. I was confused. The only child who lives next door is a neurotypical three year old girl. I talk to her mother all the time and she never mentioned that her daughter was on the spectrum.

She isn't. She does really good impressions.

My husband was working in our home office tonight and he heard the singing. He thought David woke up but the singing was coming from the wrong place. My husband looked out of the window and he saw the little girl in her window. Singing away, like David does. When she saw my husband, she gave a shy grin and ducked away.

David "sings" all the time. Sometimes VERY loudly. Windows are open but it's been too cool for the use of air-conditions. My neighbors can hear David. David sometimes sings at 2am or 4am or 6am.

I have REALLY nice neighbors.

Sesame Place Was Da Bomb!

2009-07-20T10:59:00.002-04:00

I think I had more fun than David did!

Yesterday, my husband and I took David to Sesame Place. David had a nice nap during the 1 1/2 drive there so he was well rested and ready for fun.

Fun was had too! I mean mad butter fun!

The first thing you notice when you enter Sesame Place is the Sesame Place sign which has Big Bird's face on it. David was looking at that sign in awe. He just wanted to stay under that sign. I told him that all the fun was inside because we were going to Sesame Street. Where Elmo lives, and Big Bird, and Ernie and Bert, and all the Sesame Street gang.

Sesame Place is really accommodating to those with disabilities. We were given an orange bracelet so we wouldn't have to wait in line for the rides and for special seating for the live show( which we missed on this visit because we were just too darned busy)I was very thankful for that bracelet because David is one who does not do lines well.

David and I went on an attraction called the Monster Maze. It's a pit where the floor is lined with sand and there is a maze of suspended lightweight punching bags.

At first David just ran through the maze, hitting the punching bags with his head. He would get knocked down and he would laugh. I would help him up and he would do it again. As the maze filled with more children, he noticed that the other kids were swinging the bags to knock others down. David tried it and knocked down three boys with one swing of the bag. David fell with them and the boys just laughed and laughed. I almost cried when one of the boys helped David up and knocked him down again with one of the bags. Those guys had so much fun. I just stayed out of the way because I wasn't going down!

The next attraction we did was Ernie's Bed Bounce. Adults weren't allowed on this attraction. So the attraction supervisor, Rob, took David out into the middle of the bounce.

David was jumping and doing front and back flips! I didn't even know he could do that. Rob is looking at me like- this kid doesn't need my help. But then David made his way to the corner, where the air mattress thing is attached to the wall. I grabbed him before he stuck his hand in the groove. I thanked Rob and we were off to do other things.

We entered Big Bird's Rambling River. Now, you're supposed to ride the river in inner tubes. Not David. He wanted to swim. He was given a life vest at the beginning of the ride. So we swam the Rambling River.

David went on a roller coaster with his Dad for the very first time and he LOVED it!

This was our first time taking David to an amusement park. We didn't know how he would respond to the crowds or the attractions. He did great. He really did. Everything was how it should be. He enjoyed everything. The parade with all the Sesame characters was amazing for him.

I'm so glad the visit went well. David sang and babbled all the way home. I think he was satisfied.

I Had A Plan, Then David Said, "HA"

2009-07-17T14:07:00.002-04:00

David was up most of the night last night. I guess his fits of hysterical laughter kept him from sleeping. So, he didn't go to school today. That's always bad.

We only have one car- which sucks in ways I can't even begin to tell you about. See, there's a story behind the one car. Well, anyway...

David woke up when the school bus arrived and he woke up laughing. I knew it was going to be a day where David needed a lot of attention and activity.

I dug through drawers and pockets and came up with enough cash to take a bus to a train that would take us to a children's museum about an hour away from my house.

David loves trains and the train ride itself would take an hour. I thought that would be a great thing for David to do. Lots of stuff to see during a long train ride.

I calculated my time very carefully. The bus stop is very close to my house. I chose the time of the better bus to take us to the train station. I didn't want to arrive too early at the station because, well, just because and I didn't want to arrive too late because I would have to us a self ticketing machine to avoid a 10.00 (yes, TEN dollars) penalty for not using the self ticketing machine.

So, we leave home. I had a nice lunch packed and all of David's required items in his book bag.

And then IT HAPPENED.

David decided to walk like a 90 year old man wearing cement shoes. When we finally arrived at the corner, I could see the bus. I picked him up and started running. The @#$@# bus driver was stopped at the red light. He saw me running, he saw me flagging him down. He gunned his engine and went through the light a bit before it turned green.

There's a special place in hell for people like that bus driver.

So, David and I went back home. I fed him his lunch and some of my chips that I eat when I'm frustrated. What I really want is a double margarita straight up.

Big Bird and The Beatles

2009-07-11T19:33:00.002-04:00

We had an awesome and tiring day. Well, at least I'm tired.

David went to his first ever non-family birthday party. It was held at an indoor soccer facility.

When we first arrived, there were red streamers hanging over the doors. That is until David got his hands on them. He pulled them down and played with them (Sorry again, Nicole and Chris) Our hosts didn't mind because they know David and Nicole knows what he likes.

We joined the other children on the soccer field. David let me know that artificial turf wasn't as tasty as the real thing and thankfully he only had a taste.

I was able, with much prompting, to get David to kick his soccer ball. But the main attraction for him was the heavy revolving door that lead from the indoor section to the soccer dome. It took much more prompting to keep him away from the door. So I decided for every ten kicks of the soccer ball, he could have door time.

We kicked and doored until the appearance of a very special guest.
BIG BIRD.

David lost his mind. Big Bird is the bomb. David made great eye contact with Big Bird and David's smile just lit up that dome.

David had nice sitting during the eating portion of the party. David is gluten free, so no pizza for him, which wasn't a big deal because I pack appropriate foods for him and he didn't like pizza before eating a gluten free diet. He sat nicely and ate without cramming his meal into his mouth. He actually had nice party manners.

We stayed long enough to sing Happy Birthday to the birthday girl. David discovered the vending machines and when he tried to crawl into one, it was time to go.

The second part of our afternoon was spent at a music festival near my home. It's called Maplewoodstock. Two days of music, food, and fun.

David loved it. There was a band that played Beatles and Rolling Stones tunes. David touched the speakers, the very large outdoor concert speakers. I thought he was going to obsess over them because there were hundreds of people in the park. He didn't. He touched them and then sat down on the ground to listen to the music.

David listened intently. After a few bars, my boy was singing back-up. It was pretty cool.

Being with David is physically challenging for me. I get a good work-out. I don't mind at all when he enjoys himself and he did. So did I.

Ode To Joy

2009-06-22T23:24:00.002-04:00

Today, David's class was treated to the dress rehearsal of the school wide talent show. One of the participants played Ode To Joy on the flute. While the children were seated and listening so well, everyone could hear someone humming along with the flutist.

It was David.

His teacher told us that David hummed the entire song and didn't miss a note. Everyone was amazed. What four year old knows Ode To Joy?

David.

David's father has been singing Ode To Joy to David in German since David was a baby. It's one of my favorite pieces and I often hum it around the house.

David is one of those people who can hear a song once and he knows it. Even if he doesn't use words for the lyrics, he sings quite well and it's a pleasure to hear him singing and singing brings him joy.

Words by Schiller. Music by Beethoven. Rock on, David!

Today is Autistic Pride Day.

2009-06-18T09:05:00.003-04:00

From Wikipedia: www.wikipedia.org/wiki/Autistic_Pride_Day

So today we celebrate the neurodiversity of people on the spectrum.
We have a lot to celebrate because there is diversity galore!

As we know, no two people on the spectrum are affected in the same way. There isn't a treatment option that works for all people. There isn't a magic pill that provides the cure.

Celebrate? Do whatever makes you feel good.

I will celebrate David today. He really is a great guy, even though I vent about him.

I love that David wakes up most mornings singing. He doesn't use words, he scats. There was Louis Armstrong, Ella Fitzgerald, Anita O'Day and now David. He's bringing back an art form.

I love that he will do anything to get what he wants. My husband-AKA McGuyver- did tie the dining room chairs to the table. David decided to use his Fischer Price table that is used for his home ABA sessions. When I removed that, he used the small plastic chairs to try to climb into the kitchen. When I removed those, he use a ballet barre move. He was quite graceful.

I love how David has an elephant memory. He remembers minute details that most people don't notice in the first place.

I love his sense of humor. It's twisted like mine. If he's in a room where there are too many people talking, he will take the thumbs and index fingers of both hands and mimic a bird's beak. Then while twittering his fingers he'll say, "GA-GA-GAGAGAGAA." He's making fun of us. Adult conversation must sound silly to him.

I love that he likes to watch Cops with me. I used to watch it with his sister when she was young ( how long has Cops been on?) I like to make fun of the criminals. I'll yell things at the TV. When there is a foot pursuit, I'll say something like. " You might as well stop running, you're going to get caught" David will laugh and roll around on the floor. He especially likes when I say, " Can you say SKANK?"

I love that he protects me. When we are out walking, if there is something or someone that he feels may be a danger to me, he does this weird arm thing. He will take his free arm and hold it out in front us with the palm of his hand facing me. He will then flip his hand so the palm his facing away from us. He will hold his arm and hand very rigid and use his body as a shield between me and whatever the peril is. It's the cutest thing. My husband says he has never seen David do that. I say that's because you're a 6 foot 3 inch tree. I'm Mom, the delicate flower.

I love my scatting, climbing, security driven comedian. What's not to love?

Well, I'll Be Darned!

2009-06-17T11:18:00.002-04:00

David likes to throw things at home and at school. We have been working on a program to make him pick up after himself. We've been doing it for about a month now. He always fusses and needs prompting to pick up the items that he throws on the floor.

I am happy to report that for the last two days, David has been picking up after himself without being asked!

Whoop-EE! That's a great accomplishment for any kid!

The Letter of The Day Was "V"

2009-06-15T08:40:00.002-04:00

Yesterday was my granddaughter's birthday. She turned two. My daughter had a party for her at the home my co- grandmother.

I knew we were in trouble when David wanted to leave as soon as we pulled up to the house. He started walking around our car. Around and around.

We spent most of three hours walking around the car. He walked me around about 150 times. My niece Jodelle was walked around about 20 times and Jodelle's husband was good for 5 laps.

Our car is a Volvo. Volvo has two Vs. Our license plate has one letter V. Several other cars parked on the street had Vs in the license plates or on the license plate covers or on bumper stickers.

How do I know? Because David took the time to show me EACH AND EVERY ONE.

Social situations are often difficult for David. Yesterday was probably one of the more challenging days. I would put it into the top ten. He was not interested in people at all. His afternoon was all about things. The cars, the misaligned pavement, the Cadillac emblem on the car of my granddaughter's paternal great-grandfather. David had to put his mouth on that( super YUCK!) because he never saw that before. He wanted an explanation of the symbol but I didn't have one and he was upset with me.

Now I know that sounds silly. David doesn't speak, but he has his own special way of asking for an explanation. It's a look with a raised eyebrow, a thrust of the hip, and a grunt. I had to tell him that I was sorry but I didn't know the meaning of the emblem. I would be happy to google that when we came home. That's on my to do list for today. David had a MUCH needed bath and dinner when we arrived home and he was asleep as soon as his head hit the pillow. I guess all those laps around the car wore him out.

The Good, The Bad, and The Ugly

2009-06-07T23:32:00.002-04:00

I have been on a roller coaster lately and I just want to get off or slow the ride down a bit.

David has been challenging to everyone. Love him lots, but if I had a dollar for every time I uttered or shouted the words, "NO, DAVID, NO". I would have a really nice designer outfit complete with a pair of Manolos.

The boy is driving me crazy. Ok, I get that I need to understand the function behind his behavior. I must be stupid as hell, because I don't understand the function behind using my dining room chairs as playground equipment. This must stop and stop soon, because my husband-A.K.A McGuyver- is getting ready to build an elaborate strapping system to strap the chairs to the table to keep David from moving the chairs. McGuyver, I mean Dear Darling Husband, has already constructed a door that leads from the dining room into the kitchen to keep David out of the kitchen. Think Green Acres for those of you old enough to remember. It's not the decorative statement I'm trying to make.

Did that work? Nope. David soon discovered that he can use a dining room chair to climb through the cut out-or whatever you call it, directly to the kitchen counter. ( I get the function of that chair move)

While I'm on the subject of decor- My house looks like a baby prison. I would call the decor modern cell block minimalist. There are few pictures on the walls because David has climbed and teared them down. No knick-knacks, no chotzkes. It's bare bones minimum around here. I haven't planted any flowers for fear David will eat them.- Ok, that's just part of the reason, the other part is that I'm lazy.

David doesn't communicate with words. But he can flip you off like a pro. The latest victim was his dear teacher, Miss Liz. She's a sweetheart. Truly. She was at our home conducting a therapy session and during the session she told me that David said, "Hi" very clearly to an aide who used to work in his classroom but was moved to another class some months ago. David really liked this aide and he said "Hi" to her in the hallway. So Miss Liz was saying that her feelings were hurt that David still has not said hi to her ( In a joking way of course) David rubbed his body against the entertainment center in the living room and it sounded like he said, " Miss Liz, Miss Liz" in a teasing sing-songy sort of way. Miss Liz said, "Oh yeah?!" and she proceeded to try to get him to say her name again. After much prompting he did say, "Liz". He then grunted, removed himself from the grasp of dear Miss Liz.He then walked away and flipped Miss Liz off. It wasn't just a flip of the bird. This was an under the chin, complete with biting of the lip flip( It's a Jersey thing) Miss Liz and I tried really hard to control our laughter. We did not succeed.

I will admit that David learned the flip from me. I do flip drivers off when I drive. I'm embarrassed to say that David has seen me flip many a driver. I will be more careful in the future.
Bad Mommy.

Last weekend, I decided to take David on a little stroll in a County park that is near our home. There is a walking trail that is two miles one way and has a gradual incline. I thought David would walk for a few minutes and want to stop. That child walked the four miles. It took us almost three hours, but that was ok. Many people were on the trail that day so we saw many things that were interesting. There were chipmunks which David tried to catch. There were people on bikes and trikes and rollerblades. I was worn out and David was energized. I decided to take him back the following day. I took his trike. He was able to pedal on his own. ( I was so happy. It took me a long time to teach him how to ride that trike) He didn't ride far. He got off the trike, held my hand and said,"tired".

Ok! No problem. I was really hoping that we didn't do another four miles.

That's one of the frustrating things about autism, or autism for David. There are times when he will say a word appropriately and very clearly and then we will never hear that word again. It could be months between his usage of words. I try not to get excited anymore thinking Yes! He can speak and he will. I know think that he is physically capable of speech, but his autism won't allow free speech. I understand his mannerisms and his grunts and his postures. I know that's not enough for the world, but it's enough for me, for right now anyway.

David has recently begun sleepwalking. I was a sleepwalker and so was David's sister. So that doesn't freak me out too much. We're just sure that he can't leave the house. It's just one more thing to worry about.

I'm just writing away tonight. I won't be insulted if you don't continue reading.

Lately, well since the glass eating incident, I have been more emotional. I think the enormity of David's autism is hitting me. When David was first diagnosed, I didn't have those feelings of grief and I didn't cry much. I didn't react in a way that people, and books, and doctors said I should have. Now I'm feeling angry and confused and frustrated, and exhausted. The exhaustion has been pretty constant since David's birth but it's deeper now. My bones are tired. I don't sleep well or eat well. As David is getting older, the gap between him and his neuro-typical peers is widening and it's more painful for me to witness and live with. My isolation is deeper also. I got a pedicure on Saturday and I was shocked that it cost $20.00. I had to call my daughter and ask her how much a pedi should cost. The price was right. Then I had to think when was the last time I had a pedi. I couldn't remember.

Part of my frustration lies with the experts who work with children who have autism. I can ask why David is doing some of the things he does and I get the "I don't know" answer. Well, Dang! If they don't know, then I'm just screwed. He can't tell us, we can only guess.

Living this life is hard. It is tough to be consistent and I admit that I sometimes take the easy way out. Take dinnertime for example. David wants my attention during that time. Momma has to cook. I know I should walk David back to where he should be sitting and make him sit and tell him to show me nice sitting and keep walking him back everytime he gets up. Yeah, that sounds great in theory. However, I'm a 30 minute meal kinda chick. I like to have a full meal complete in 30 minutes. I've gotten pretty good at it too. Doing the ABA nice sitting thing eats into my 30 minutes big time. So, Momma has to have a plan. What is the one thing that David will chew on that will keep him still and not want Momma for 30 minutes? It's my bra. (Call Social Services if you want to- it works) David likes to chew the plastic stays of my bra, so I will give him one- a clean one thank you very much. He will sit and chew and play with it until dinner is served. Is that appropriate? Nope. Does it accomplish my goal? Yep. 'nuff said.

We have started potty training bcause I told you all that I will not be changing the diapers of my pubescent son. I must say, it is going well. He will sit on the toilet without resisting. He is able to go #2 but he won't urinate. (I know, that's backwards, right?) There's no pressure, we just take him to the toilet and reward him for sitting. Slow and steady wins the race and will get that boy out of diapers.

I have met many wonderful people who are readers of this blog. I have become friends with a student who lives in California. She is studying to be a behaviorist. She is awesome. She was kind enough to allow me to participate in a class project and she shared pictures of herself and her family- DJ you are awesome! Everyone who writes to me changes my world. They may not realize it, but they do. Just knowing that I'm not alone and having someone, a complete stranger, take the time to send me an e-mail with words or encouragement or advice means so much to me and I thank you all. Keep those e-mails coming and look for me on facebook too. Search for my full name in No. New Jersey and you will find me.

So that's Autism- The Good, The Bad, and The Ugly once again. The good gets better, the bad gets worse, and the ugly just keeps on being ugly.

I'm Trying To Choose My Battles

2009-05-22T10:18:00.002-04:00

I'm losing miserably.

David has been really defiant lately. Everything is a struggle. He resists diaper changes and being directed from being somewhere or doing something that he isn't supposed to be doing.

It's tough. Being consistent is wearing me out.

He's also mouthing again. EVERYTHING goes into his mouth. Today's casualties are the plastic coating that secures the cord of an electric fan and an alarm clock. He chewed the alarm clock before throwing it down the stairs. I knew when I heard it crash to the floor that it was a goner. His teachers are having issues with the mouthing too. David is eating books and whatever else he can get into his mouth. He was given a chewy-tube to use for appropriate chewing. David started using the tube as a rescue device. If he didn't want to work on his programs or be directed during his other therapies, he will break out Mr. Chewy, which is attached to his jeans, and play and chew it instead of working.

We're looking into another way to deal with the chewing.

We have an IEP meeting on Wednesday. One of the issues that I have is that David still doesn't speak or imitate sound on command. He does however imitate phrases in music all the time. The selection of the week has been Miss. Celie's Blues from The Color Purple. We were watching it as David drifted off to sleep on Monday evening. David hums the melody of songs that he likes. Miss Celie's Blues and the final Jeopardy question theme song have been my treats this week. So, that had me thinking that maybe Music Therapy would help David and encourage speech.

If anyone has had experience with Music Therapy, please let me know.

Has Anyone Heard From The Kirton Family???

2009-05-22T09:54:00.002-04:00

John and Robin- If you're out there, give a holla.

I Don't See You.

2009-05-16T11:45:00.002-04:00

David has had a sudden change of behavior that I now know is due, in part, to his severe seasonal allergies.

In short, he's driving me crazy. Since he's too young to drive, that has to end and pronto!

So from now on son, I don't see you!

You want to take the dining room chairs and use them as ladders and slides. That's cool because I don't see you. If you fall, you won't fall far. The chairs and table are already nicked and damaged from your play upon them. so I don't see you. I also don't see you climbing the double gates into the kitchen. I will just silently lead you out of the kitchen.

I am ignoring the negative behavior. If your behavior doesn't involve blood, guts, and glass, then have at it.

I have made myself hoarse from all of the David No-ing that has gone on around here for the last two weeks. What was I thinking using a verbal command anyway? If your behavior doesn't involve the aforementioned blood, guts, and glass then you won't hear anymore David Nos from me.

But if I catch you being good then we're gonna party like it's 1999.

This works for me. I hope it works for you too.

We Have Racoons!

2009-05-11T09:56:00.002-04:00

And I think those racoons have autism.

Like my son,these racoons are eating things they aren't supposed to.

They are eating my roof!

They are just chewing away. Enjoying the texture of roofing shingles. They will throw the shingles wherever they want to before enjoying the next one.

I need a behaviorist who specializes in racoon behavior.

The 2009 Autism Awareness Month Is Almost Over.

2009-04-27T12:07:00.002-04:00

Another April is coming to a close.

Is it me, or are there less autism oriented programing on television this year? Comedy Central isn't doing their fundraiser that was aired last year. I no longer have HBO so I don't know if they are airing anything this month. I haven't noticed any new programming on the cable health channels.

What does this mean, if anything?

Maybe I'm just being paranoid. I mean, all I've been hearing about all weekend is Swine Flu.

Is the bloom off our rose? Are we doing enough to raise awareness and keep the media interested in what happens in our world? Not only each April,but each and every month of the year.

That's my question of the day. The thing that makes you go,"Hmmm".

It's Been A Very Challenging April

2009-04-24T11:51:00.003-04:00

This has been one heck of an April.

David ate the glass, then he and I came down with a nasty stomach virus. David is better. I am not. If you want to lose your winter weight with the quickness, eat saltines and dry toast for two weeks. After this is over, I doubt I will eat saltines or dry white toast for a very long time.

My daughter passed out at her home. Her building super (or maintenance man for those of you who don't have supers) was there with her when it happened- Thanks Mr. Super for taking care of my girl!

The same night, my grand daughter was hospitalized with a non-viral stomach issue.
Note to caregivers: Do not feed a 22 month old 3 slices of Domino's Pizza, fried chicken, and half a bag of Reece's Peanut Butter Cups.

My grand daughter will start nursery school on Monday.

There were loved ones who passed away and those who are surgical patients.

Yes, it's been a very challenging April.

Living with Autism everyday does not exclude us from everything else that can and will happen in life. I think living with Autism has made me better prepared for the unexpected. When those curve balls come low and inside, I just swing my hips and change my stance. I tighten my grip and keep it moving.

Sometimes It's Just Plain Scary.

2009-04-09T09:39:00.002-04:00

David ate a light bulb!

Not an entire light bulb. Just enough to send me into a spiraling panic!

On Tuesday evening I was cooking dinner. David came to the baby gate that separates the kitchen from the dining room and I heard him crunching something. I asked him what he had and he handed me a piece of glass. I looked around the corner and saw a lamp on the floor and David was just crunching away.

Long story short..David is fine. No damage seems to be done. Things seem to be passing without trauma.

The ER staff moved very quickly, but they were all skeptical that a four year old would eat glass. It's painful to have glass in ones' mouth. I had to let them know that David has autism and whatever you believe about what a four year old will do doesn't apply here. He ate the glass, I saw him chewing glass, my husband and I removed glass from his mouth. HE ATE GLASS!

This wasn't an ordinary light bulb. That would be too easy. This was one of those mercury containing, energy saving, thick, spiral tubed light bulbs.

So we wait and see. David seems fine, His appetite is fine and his digestive system is working fine with no signs of trauma.

Momma on the other hand was traumatized.

I'm not a crier, but I cried for two blocks during the drive to the hospital. I kept remembering those stories about Vietnam POWs who were fed ground glass..I know, I'm a little loony.

I told the ER doc that there was mercury in the light bulb. I described the bulb to him and he said they were florescent and did not contain mercury.

Momma knew better.

I called the manufacturer who confirmed that there was a small amount of mercury in the bulb, in the tubing itself. A small amount of mercury, about the size of 1/2 a penny, but most of remains in the base during use.

I called poison control. A nice nurse who answered the phone said that the mercury used in these bulbs is "an elemental mercury and not toxic"

Huh?!?! I didn't know the words mercury and not toxic could be used in the same sentence.

Whatever!

Joe Steffy ROCKS!

2009-04-05T18:26:00.001-04:00

And he pops too!

This is Joe Steffy
http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness

Way to go Joe!

Today is World Autism Awareness Day

2009-04-02T11:58:00.002-04:00

It's worldwide. Autism is everywhere.

Autism knows no boundaries. Autism can and does affect anyone regardless of race, creed, socio-economic status, and gender.

1 in 94 children in New Jersey are affected by autism. Children are diagnosed all over the world every single day. Every minute of every single day.

No one knows what causes autism. There are theories. The problem is that since no two people are affected in exactly the same way, the cause of my son's autism may not be the same as your son's autism.

Since this is autism awareness month, we see more televised news stories about the cost of autism. People have asked why the cost of autism is so expensive.

I'll tell you why:

The costs start with the diagnosis. Depending on your health coverage, for those of us blessed enough to have health coverage, there are out of pocket costs associated with doctor's visits. So we start with the co-pays and deductibles for doctor's visits.

If your child is diagnosed before age three, your child will qualify for Early Intervention services. Early Intervention is a wonderful thing. Because of budget cuts over the last few years, most states have cost-sharing requirements for Early Intervention services. David received 22 hours per week of services. Those services included:
ABA Therapy
Speech Therapy
Occupational Therapy
Physical Therapy
Oral/Motor Therapy.

Therapist do not earn close to minimum wage, not that they should, but for a child requiring services, and our kids require many services, the weekly cost can be a heavy burden.

Once our kids reach school, they will receive educational and support services from our local school districts. Anything above and beyond the scope of the child's IEP (Individualized Educational Program) will be paid for by the parents.

We are fortunate that David is in an pre-school class for children with autism. He attends school full time and he receives 6 1/2 hours of additional ABA home instruction. Those 6 1/2 hours are part of his IEP. They are for now. That may not be the case during his next IEP review.

For our family, the expenses we incur right now involve insurance co-pays for all the doctor visits and labs that are done during the year. There are things we can do for David that would benefit him, but we just can't afford those expenses right now. We do what we can at home, under the guidance and with support from his teachers and behaviorist. But there is so much more we could do.

There are costs associated with respite care. Costs for childcare for working families. Sitters and other care providers who have experience working with the developmentally disabled earn more that traditional child care providers. The costs don't end and they grow as our children grow.

April is Autism Awareness Month.

2009-04-01T08:23:00.002-04:00

Another April.
Our 5th April with Autism.

My son David has Autism.

David is also funny and loving. He loves music. He is one of those people who can hear a song once and know that song forever. Like his parents, David has very eclectic musical tastes. He still digs Amy Winehouse. He likes Motown. He likes William DeVaughn-who doesn't, right? He discovered the Gospel Music Channel.There is a singer he likes who has three first names. I have to find out who that is so I can get a CD.

David likes to know how things work. He is really interested in how things are connected and he notices if something is out of place. We moved into our house almost two years ago. David has taken the time to point out every imperfection. He should have done our home inspection.

Autism is a neurological disorder that affects three areas of development: Communication, Behavior, and Social Interaction.

What does that mean? For David that means at four years old he doesn't speak and he is not able to effectively communicate his needs or wants. Imagine that your child wants a cookie. He or she would point at a cookie or say cookie or something that sounds like cookie. For David he knows where the cookies and other snack items are kept in our home. He will grab someone, usually me, and push me towards that snack area. He will not point to the preferred snack item. He will pat my bottom until I give him the snack that he desires. That works for us, but that method of communication will not work for someone who doesn't know David.

When we say behavior is affected by autism that doesn't mean how a child acts. Behavior is anything that you do. Sitting is a behavior. Walking is a behavior. Our kids have trouble with behavior, thus they have trouble living in the world. We have to teach our children behaviors. The most simple, most fundamental behaviors MUST be taught. Over and over and over again until the desired behavior is mastered. It is exhausting. It takes weeks and sometimes months to teach a desired behavior. Things like using a fork or getting into the car independently and sitting in the car seat take a lot of effort and trials before the task is mastered.

Some may ask of those with autism are incapable of learning. The answer to that is a resounding NO! In fact, most people with autism have average to about average IQs. The way people with autism learn is different from the way neurotypical people learn. For example, David will not respond to a verbal request. I can say, "David, come here". until the cows come home. The cows will get to me before David does. A physical cue, my hands turned palms up and my motioning with my fingers for "come here" works. David has an incredible memory. During our walks he knows which yards have the flowers that I like and he makes sure to walk me past those properties. He can visit a doctor once a year, but he knows where the exam room is. There is a nail that sticks out of our neighbor's picket fence and David will finger that nail every single time.

David was born with autism. I knew something wasn't right from the time he was three days old. I couldn't put my finger on what was wrong at first, but as time went by, the signs were all there. David never looked at me or others. He would look at the mouths of people, but not the eyes. He was slow to reach milestones, which had other diagnosis to blame for that. David has hypotonia(low muscle tone) and he was very heavy, so that was the reason given for his not reaching his milestones. Me, being Momma, knew that wasn't the reason. David was diagnosed with Severe Autism when he was 22 months old.

Autism is not the same for any two people. What is true of David isn't true of his classmates for example. The way a person is affected is different.

I, like many others, viewed some Autism checklists that are available online and I couldn't check all of the boxes. Like, one of the issues mentioned on most of the checklists I saw was that a child was incapable of showing physical affection. David has always been a cuddle monster. I now know that his cuddling wasn't an attempt to show physical affection, rather, it was his need for sensory input that caused him to climb into my lap and want hugs. David also never stacked things or lined things up. He did, however, play in patterns. He had musical toys. He would turn them all on and activate certain sounds in patterns. We used to joke that he was a DJ in training, but it was no joke. It was a symptom of the disorder.

Kids with autism will typically have scattered skills. David is 4 years and 3 months old. Developemtally he's probably around 2 years. He's still in diapers. I'll admit it really SUCKS to diaper a four year old. I'm not even gonna lie! He still needs help dressing, but he has undressing down cold. He doesn't use pencils or crayons. Actually he dislikes both of those things. He doesn't speak. He will use a word once, and we'll never hear it again. It could be months between words. There are those with autism who never speak and are always in diapers.

Autism is also a learning experience. I expect things from David but I am realistic. I expect my son to be a good person. I expect him to clean up after himself and to treat people with respect and decency. I expect him to learn,to laugh and to love. I no longer expect him to speak and I'm fine with that. I know that he has a lot to say and he may never be able to express himself verbally. I will find a way for him to communicate with others. I do expect him to be toilet trained because I will be damned if I will diaper my son when he hits puberty. I just WON'T. There I said it. I expect my son to be out of diapers. It is one thing to deal with morning erections in a four year old, it is quite another to deal with that in a 14 year old. There-I said it, I said it and the world did not end and I don't feel guilty about it either!

People in the community will see us with our children in supermarkets and other places and our kids are melting down, screaming, and just plain miserable. This is not because they are naughty children or have parents that can't control them. There is something about that environment that they simply can't handle. It could be the lights, the sounds, the number of people. It could be anything or everything. The bad thing is we don't know what it is because our children can't tell us. David used to be a screamer in stores. He doesn't react that way anymore,but for about two years, going to the supermarket or Target was a miserable experience. Now it's fine, but he can't do restaurants. As soon as he's inside, it's time to go and he means NOW!

There is a very dark side of autism for the families living with it everyday. I can only speak from my own experience and I'm going to, but trust me when I say it's not easy.

Living with Autism everyday is exhausting. It takes a very deep and physical toll on the caretakers. I lost 70 pounds. Yes, 70. I only needed to lose 30. For a time I looked like walking death. David wasn't sleeping, which means I wasn't sleeping because I wasn't sleeping, I was too tired to eat. I lost that weight in a four month period. At first, no one noticed that weight loss because I was always wearing PJ pants and big sweaters. I didn't noticed either. I know that sounds crazy, but I didn't notice until I needed to buy some clothes. Then I became aware. I went from a size 14 to a zero in 4 months. THANKS AUTISM! I was totally consumed by autism and David's needs. It was awful.

I know, you all are asking how my husband didn't notice. At the time, I lived with my husband and my daughter. My husband worked full time and was in Grad school. My daughter worked full time and was a teen. They had lives, I didn't. I rarely left the house. It is still true that I rarely leave the house.

Living with Autism everyday is isolating. I do not have peers that have a child with autism. I do not have peers who have pre-school aged children. David has never had a play date. I don't have "my girls" to hang with on a Friday night. I will admit my circle of friends had always been small. My best friend has been my best friend since we were 12 years old. She now lives across the country (Love ya girl!) Finding a babysitter who can care for and understand David is a challenge. We have my husband's parents, but they are busy and involved people with lives of their own. They can't physically lift David, which is less of a problem now than it once was. David's sister has a child of her own and a life of her own so she isn't available for babysitting duties often. The last time my husband and I went to a movie together we saw Ray and I was 9 months pregnant. We don't visit people as a family because David isn't always able to visit. We are working on that now, but it's still difficult. My husband and I don't have date night due to the babysitting issues. My husband has a life outside of the home and I don't. I really resent that sometimes. It's not just that he's working, it's that he can go out on Saturdays to run errands and those errands take 12 hours. He needs to escape and relax and relate to others and he gets to, I don't. Yes, it pisses me off and yes, it's not right. It's been so long since I've had an adult conversation that I think I have forgotten how to.

Autism is tough on marriages. Amen and all that. I would not describe what my husband and I have right now as a marriage. I would describe it as two old friends who just happen to live together in a house with a really cute four year old boy who just happens to have autism. It's tough. I think if we weren't old friends and didn't share the believe that once you're married and have children together you make it work no matter what-well, we would have said Hasta La Vista Baby a long time ago. We have issues with each other. Some are more like items, but most of those issues were there before David was born. Living with autism just makes those issues harder to work through but also makes us want to work through them. I will always love my husband, and I hope he will always love me. We both love our son and that's forever and that's what keeps us going, together.

So, there you have Autism-The Good, The Bad, and The Ugly.

It's Playground Season!

2009-03-27T20:39:00.002-04:00

Today David and I went to the playground for the first time this season.

I'm sad to report that David no longer fits in the bucket swing. The cool thing is he knew he wouldn't fit in the bucket swing. I tried to put him in one and he wouldn't put his feet in. He placed his bottom in the swing with his feet dangling over the side.

He didn't have a melt down because he didn't fit in the swing and he wasn't upset that the regular swings were occupied. We just made out way around the playground and had a lovely walk around the neighborhood.

We looked at the budding flowers. We looked at people riding bikes and walking their dogs. We had a very nice time together.

David showed a new level of maturity and confidence with today's playground season opener. He remembered things from last season's walks. My neighbor on the corner has a fountain in their front yard. David was looking for the water. It's too early in the season for the water. I told him it will be a while before they turn the water on. He looked for another neighbor's dog who is usually in the side yard. We didn't see him today.I didn't have the heart to tell David that the dog may have gone to doggie heaven. The dog is/was very old. David knew which yards held the season's first flowers and he made sure to walk me to them because he knows how much I love to see the crocus and daffodyls.

He really is a sweet kid.

Another Sick Day

2009-03-17T10:28:00.003-04:00

It'a amazing to me how such a little guy can become so ill so quickly.

David was fine yesterday morning. He went to school happily. I retrieved his sleeping body from the bus at the ususal time. He didn't feel warm. My husband arrived home just as David's bus arrived. I thought that would be a good time for me to go to the grocery store.

When I arrived home at 5:30 my husband greeted me at the door with,"Where's the thermometer?" David's teacher was holding a very sick looking and shivering David.

His tempurature was 104. Geez! Momma sprung into action. A dose of Motrin. Some water in a sippy cup, call to the pediatrician, and I invited David's teacher to wash her hands and spray herself with Lysol if she felt the need.

A trip to the pediatrician was negative for ear infection and rapid-strep. So, we're calling this a virus.

During the doc's exam. David stuck out his tongue! Whippee! Why is that significant? It is significant because David is four and he has NEVER stuck out his tongue. We thought he was tongue-tied for a minute, but he isn't. We thought he lacked oral-motor strength and was unable to stick out his tongue. We have been working with David to try to get him to stick out his tongue for months.

All it took was a 104 degree tempurature and a teeny tiny light.

This morning, David woke with a fever of 105. Dayum, right? Another dose of Motrin, more fluid, a cool cloth to the head and prayers to the fever gods that the Motrin would kick in quickly and there would be no seizure. The Motrin worked. Phew!

He's watching Elmo and he wants to be rocked while I wrap him in a clean towel.My back needed a break but I think it's time for more rocking. Maybe I can get David to eat a little something.

Spring is coming soon, right?

You Expect Nothing, You Get Nothing.

2009-03-15T16:53:00.002-04:00

Like many kids on the spectrum, David is non-verbal. He isn't able to utter two words together or use a word on command.

There is the rare instance when he does use words. Like today.

Our town's St. Patrick's Day parade was held today. We live at the end of the parade route. We took David to the parade last year. It was crazy cold last year. If I remember correctly, the temperature was about 30 degrees with a wind chill factor of what the heck are you doing outside.

David wasn't aware of anything happening at the parade last year, well, other than the cold.

This year was completely different. We left home to walk around the corner to see the parade. When we turned the corner, we were instantly greeted with hundreds of parade goers. It sounded like David said, What's that? I told him it was the parade. The parade for St. Patrick's Day. David walked into the crowd. He looked at the vendor stands and all the people. We walked a bit further to the parade route. David was looking for a way in, to see the parade. I found an opening in the temporary fencing and we sat on the curb and watched the parade.

David really enjoyed it. He loved the Batmobile and Batman. The Batmobile was burning rubber right in front of us. David cheered when others around him cheered. The sounds of the drums didn't seem to bother him.

Sometimes, I don't want to take David out. I mean, I feel bad for feeling that way. What kid doesn't like a parade or a trip to the zoo?

It's just so much work for an experience that may end in frustration and tears.

Today was a good experience. When I had to get David ready to go, I asked him if he wanted to go out to the parade. He was pretty cooperative when we were getting ready. He tried to open the front door before his shoes and coat were on. That was ok. He understood that we were going out. A year ago, he wouldn't have responded to my words that way.

I have decided to change my attitude. If I expect nothing, I get nothing. From now on I will expect to have a positive experience when we go out.

Bittersweet

2009-03-14T12:01:00.003-04:00

My grand daughter, Layla spent the night last night and she may be here all weekend.

She will be two in June. She is a great talker/communicator. She has the same wacky sense of humor that many of the family members, including David, have. She's cute and sweet and she loves her Ghe Ghe (That's Me!)She loves her Uncle David and her Poppa

Having Layla visit also makes it painfully obvious just how affected David is by Autism.

Bittersweet.

We're thrilled that Layla is neurotypical of course. It's just difficult having a neurotypical child, who is half David's age, doing all of things things he could have been doing, should do, and may never do.

David and Layla are playing together right now. Watching Elmo, saying their ABCs and 123s. Layla is using words. David is using approximations and grunts. They both like the Dogs with Human Hands, which frankly, creeps me out. They both like to dance at the dance bits and they like any bit with animals, even without human hands.

THE UGLY!!

2009-03-11T13:51:00.002-04:00

Last night was ugly! No, it was more like fugly.

I went to the grocery store and I returned at 8:30. David was asleep. I thought, great! I can get some down time.

At 12:30 when I was going to sleep, I thought I heard him singing. I went to check on him and I didn't hear anything through the door. So, I thought he was putting himself back to sleep.

NO! He did not put himself back to sleep. He woke up at 12:30 and did not go back to sleep until 6:30 this morning.

He was out of control crazy. I couldn't soothe him. I couldn't get him to be quiet. I fed him. I turned Elmo on. Nothing worked.

He couldn't be still. He was jumping, screaming, singing, banging on the walls. He was doing back flips off the recliner directly into forward rolls on the floor. (He had great form too)

What the hell?

I don't even know why this happened. His sleeping patterns have been off lately. His teacher reports that David is pretty much done at 1pm and seeks naps until 3:00

Sigh...It was ugly. I hope there is a long lapse until the next Ugly.

Sensory Issues

2009-03-09T11:36:00.002-04:00

I'll admit it. This is the part of David that I just don't understand. I don't know how to help him through it.

For the past week, David has been seeking sensory input big time. Our sofa is a queen-sized sleeper. On Saturday, David removed the center cushion and then shoved his left leg in the teeny tiny space between the mattress frame and the sofa frame. His leg was really wedged in there very tightly. He didn't seem distressed or in pain. In fact, he kept trying to get his leg to go deeper. I asked him if he needed help-help removing his leg that is. He refused my offer with a wave of his hand. I told him we had to remove his leg, he could hurt himself. I tried to take his leg out and I was concerned that I would injure him. I told David that I would be right back, I was going to get the margarine ( I keep a family sized tub of Country Crock. It has a delicious country fresh taste and it works really well if your kid every gets a body part stuck in a place it doesn't belong.It keeps the fire department away too). When I said that, David flexed his hip and put my hand on his leg. I was able to remove his leg without smearing my sofa with Country Crock.

I don't know why the sensory seeking comes and goes. I don't know what causes it. Lately David has been biting himself and others. He will bite others if you are holding him to make him do something and he doesn't want to do that. At home, the second biting incident gets a time out. The first one is free. I can't say to David, "Use your words" because he doesn't have any. However, I can say, "David, use your NO" His no is pushing your hand away or using a deep grunt. He gets it. He usually remembers to use his no.

We had a great weekend. My daughter and grand daughter spent the night on Saturday. The daughter and grand daughter were fast asleep by 8:30 and I didn't hear a peep out of them until morning. David on the other hand didn't go to sleep until 1am. He had a late nap and that just messed him up.

My grand daughter was left with me on Sunday so my daughter could do some work at her apartment. My sister and niece came over for a visit. My niece wanted some pictures of my grand daughter to show her husband. My niece got her camera ready and my grand daughter( Layla, the Ham) was saying "Cheese" and posing with me. David noticed and he wanted his picture taken too. We all told David to say "cheese"

David said "Cheese" and he posed with the cheesiest grin ever! We were so happy.
David had good eye contact and appropriate play all weekend. He even shared!

David is an Elmo fan. Layla likes Sponge Bob. There was a bit of an issue over what to watch. So I told the children that we had to share. David would get to watch one Elmo and Layla would get to watch two Sponge Bobs. If they wouldn't share the TV, there would be no TV. I told them to think about it while I got them some juice. They liked my idea because there were no other issues with the TV.

My grand daughter's father came to pick her up. He said Hi to David while I was getting Layla ready to leave. David wrestled with T, my other son. They were doing typical guy things. Wrestling, tickling, rolling around my toy filled living room. It was great to see. David loves T and he likes to show him how much with a well-placed Suplex!

Radio Show of 3/6/09

2009-03-06T23:44:00.002-05:00

Blogtalk Radio had a system wide outage during my show! UGH!

I will reschedule and let you know when the next show is.

If anyone is willing to be a guest on my show, please let me know. All you have to do to be a guest is dial into the program during show time. I would give you the script for the show well before showtime.

Good Morning!

2009-03-06T10:57:00.002-05:00

Happy Friday to you all!

David is tolerating the Nystatin well. He'll be finished on Monday. I hope the Nystatin is ridding his body of the excess yeast. I really can't tell if it's working.

Since David was a baby, there have been times during diaper changes that I would smell something that I describe as "chemically" That chemical like smell is back since he's been on the Nystatin. Maybe that smell is/was excess yeast. He's tolerating the drug well, no adverse reactions and he has been very cooperative in taking the stuff four times a day. So that's something.

Do you Facebook? I do and it's a lot of fun. I have reconnected with old friends and classmates and a person can't have too many friends, right? So join me on Facebook! Just search my name and send me a friend request. Let me know that you know me from my blog. I also have a group there- Autism, The Good, The Bad, and The Ugly. Come hang out.

There will be a radio show tonight at 10PM Eastern Time. It's at www.blogtalkradio.com

Pour yourself a glass or wine or a cup of herbal tea and join me!

Have a great weekend! The weather is supposed to be nice here this weekend. We had a snowstorm on Monday so I'm really excited about the temperature being in the 60s!

YEAST!

2009-02-22T20:18:00.002-05:00

As part of our biomedical support for David's autism, we had him seen by a gastroenterologist.

The test results are back.

David has an overgrowth of yeast in his intestines. We were given a prescription for a ten day course of Nystatin.

Well, what does that mean exactly? I understand having too much yeast, I get that. But what does that mean for kids like David?

We haven't started the Nystatin yet. We wanted to give him a bit more time on the GFCF diet and frankly, I wasn't in any hurry to collect another stool sample, thank you very much. I will call the school nurse tomorrow to let her know she will have to give him a dose during school hours and ask her the best way to handle that.

Could the overgrowth of yeast explain David's weird behaviors? Like laughing hysterically for no reason? And being hyper as hell sometimes. The neurologist that saw David on January 13th of this year did diagnose him with ADHD and have us the Daytrana patch. We decided to try the GFCF diet and behavior modification techniques before slapping the patch on his booty. Could it also explain why on very humid days, David has trouble staying on his feet, which we thought was due to his hypotonia.

Frustration! Seriously!

I will let you know what happens during and after the course of Nystatin. If anyone has any experience in this area, please reach out. I am clueless and not too proud to admit it. I have no experience with this at all and any guidance would be greatly appreciated.

David A.K.A Naked Boy and The Aquarium

2009-02-17T00:05:00.002-05:00

We had another great day.

My husband and David had the day off from the respective schools, so we decided to take a drive to Camden Aquarium.

We weren't sure if David would:
(A) Like or even be interested in visiting the aquarium
(B) Be able to handle the crowds
(C) Be able to handle walking since we had to retire the stroller

A,B,and C were non-issues. Totally.

The drive from our house to Camden takes a bit more than an hour. David decided that being naked is the only way to travel. He removed his shirt and rode in his car seat topless until his Daddy pulled over to put his shirt back on.It is February after all and shirts should be worn during Februarys in New Jersey.

When we arrived at the aquarium, David was napping. He woke up a bit cranky. We had to walk in the cold from the expensive parking space located in West Hell to the aquarium. There was a line for ticket outside, in the COLD. I sat with David on a bench while my husband purchased the tickets. I fed David a light snack while we waited.

David walked into the aquarium and he just loved it. He loved the exhibits. (They were pretty cool) He didn't mind the people. He walked nicely with us. He was engaged, excited, interested and curious about everyting the aquarium had to offer. He sat nicely during lunch time. He used the stairs appropriately and he didn't push people out of his way to get to where he wanted to be.

Our Auntie and Uncle live a short distance from the aquarium and we stopped in to visit them. We were a bit worried about David's behavior. They don't have small children in their home of course but they do have a grandson a bit older than David.

Normally, David is Doctor Destructo while visiting. He is non-stop motion. Slapping things,pushing things. Visiting family with David is a challenging and exhausting experience for everyone concerned.

Ok. They have a huge TV in their family room with items sitting on top. Items on a coffee table. Large floor to ceiling closet doors that are ever so inviting to a door stimmer like David. Auntie found a male cloth doll and a wooden truck for David to play with.

David played with the doll and wooden truck. He stimmed very little. He loved that doll and played with it appropriately. He liked the doll so much that Auntie let David keep it. He took it to bed with him tonight.

We were actually able to have a nice visit, a great dinner,and David did not destroy anything. At one point, David was trying to tip a chair that sits in front of the kitchen counter sitting area. Uncle told David to stop. David looked at Uncle and stopped tipping the chair.

I wish I had recorded David at previous family visits and the visit today. I swear to you, it's hard to believe this was the same child. He was so, oh hell, so FREAKIN GOOD!

I know that we have worked long and hard working at modifying David's behaviors. At home and at school, we have been on him like ugly on an ape. We changed his diet. We changed his behavioral programs. We expect "big boy" behaviors from our four year old and we have finally, finally, started getting what we expect.

I am so happy I could cry. But another part of me is like, Nah, this is a fluke. David has a history of being inconsistent in most things and this new and greatly improved David is just a coincidence. However, these co-inky-dinks have been pretty steady. When he is having a moment I can attribute them to his being tired, overworked or hungry.

David has more language too. Consistently,well at home anyway. He now says the letters D-E-F and X (X ain't an easy sound by the way) and in spanish, yes spanish the letter jota(j) David has a leap frog drum that says the alphabet in english and spanish. He approximates counting 1-2-3 and then 9-10. No words for those letters but more like a grunt that can be understood as counting, well, by me anyway.

I have always believed that with hard work and maturation, David's behaviors would change.I didn't expect the changes to be sudden. I'm talking sudden like a bolt of lightning. I hope these changes aren't the calm before the storm of new behaviors that are as if not more challenging than the ones we have been trying to change. The whole naked thing is getting old!

Who Are You And What Have You Done With My Son?

2009-02-12T18:08:00.003-05:00

David has the oh so common sleep pattern disturbances that are so common in people on the spectrum. David will typically have two or three days per week when he doesn't sleep through the night. Once he is awake, he will stay awake for hours.

When I met my husband in the kitchen this morning, he mumbled something about having three hours of sleep.

I went to wake David. He was wearing only a diaper. Yes, he now wants to be naked during his sleep hours too. I told him it was time to get up, the bus was coming. He didn't move. I shook him and sang to him and I asked him if he was going to school today.

He looked at me, pulled one of the body pillows over his head and said, "NO!"

I told him it was time to get up. I even turned Elmo on. I knew it was a done deal. He wasn't going anywhere. He must have been up most of the night because he didn't wake up until 10.

I needed to keep him in the master bedroom because the downstairs part of the house is cold and David won't keep his clothes on. What that means is I make sure the room is David proofed. I give him some toys to play with, Elmo on the big screen. I put a key in the door lock on the hallway side and secure that with a clamp so he doesn't OPEN/CLOSE OPEN/CLOSE the door all day or go into the bathroom and play in the toilet or go up and down the stairs.

Ladies and gentlemen! I am proud to announce that NONE of that was necessary today.

David and I shared breakfast. A GFCF breakfast at that. I gave him a bucket of toys and I couldn't find the clamp for the key or the key! I went into the office to get my lap top to prepare to spend a day in the corner on the floor watching Elmo.

No siree Bob! David stayed in the room with the door open. He only came out when he needed me for something or wanted me to play with him ( YES! I SAID PLAY WITH HIM!) or he wanted me to do the dance that was being shown on Elmo. He didn't bang on the mini-blinds. He didn't attempt to climb the dresser. He didn't attempt to climb into the new smaller dresser that sits by the bed. He stayed in the room when I needed to go downstairs. He did follow me down once. When I told him we had to go back upstairs because he wants to be naked he OBEYED!

He played with his toys. He played with me. He watched Elmo. He laughed, he sang. He didn't act- I'm sorry son- CRAZY!

I can't believe it. I kept feeling the boys' forehead to see if he had a fever. He was coughing a lot yesterday, but he hasn't coughed at all today and his nose isn't runny. He ate a lovely GFCF lunch. Tuna with rice crackers dipped into it.

It was a great day.

Could the GFCF diet have something to do with this very sudden and very welcomed change of behavior? It hasn't been a full week. Before we went GFCF we did practically eliminate Lactaid milk because of cold season. We also seriously cut down on foods with too many ingredients (food additives and preservatives)

I really don't know. Today could have been a total fluke.

We Were Played Like a Violin

2009-02-11T17:40:00.003-05:00

Sometimes that's ok.

David's teacher comes to our home after school to provide supplemental behavioral therapy.

David was sleeping when the bus brought him home. I let him sleep. When his teacher arrived she told me that he looked a bit green this morning and was coughing a lot. I knew he wasn't feeling well, he has the sniffles, what else is new.

After a while, David did wake up. What he did next was highly unusual.

He played with us. PLAYED! WITH! US!

He had me and his teacher clap our hands together. He said yes-twice. He wrestled his teacher to the floor and HELPED HER UP! He had amazing eye contact throughout our abbreviated session.

His teacher was impressed. I was impressed. David was in charge today.

David's Dad came home and we shared what happened in the session with him.

Then we realized that we had been played.

That's ok. This time!

David and the GFCF Diet

2009-02-10T23:34:00.004-05:00

This is my first report for our year of biomedical support for David's autism.

We are on Day 3 of the GFCF diet.

We tried this last year and it was a complete failure. Last year, David was still eating baby foods and baby cereals as his primary food sources. Since he has been eating and trying new foods often and is being helped using a fork at home and at school, his Dad and I thought that now is the time to start again.

On Saturday, my husband made a pot of GFCF soup. Okay,it was a stoup. Okay, it was a creation that was inspired by my husband's friend Brian.

It was one hearty soup. FULL of dried beans. You will understand why I mentioned this in a moment.

This GFCF soup was pretty tasty and FULL of dried beans. David really enjoyed it and he ate several helpings over the course of the weekend.

This time around with the diet, I decided not to use the GF breads. Let's face it, that stuff is not bread, It's disgusting to true breadophiles like me and David. Bread/sandwiches and cheese have been eliminated and won't be replaced. David is now eating cooked red meat and chicken. He loves my tuna cakes. He eats rice, beans, and veggies with some coaxing. Daddy makes David smoothies with lots of fruit and David eats bananas and apples. David doesn't like pasta, so no problem there. He will eat eggs if something else in included. He does enjoy is Daddy's egg salad.

I feel much more confident this time. David has been eating the meals I prepare. Last night's dinner was tuna cakes. I normally make them with bread crumbs. I couldn't use bread crumbs and I didn't have gluten free bread crumbs, which is really an oxymoron if you think about it. I did have gluten free pretzels. I smashed them up and used them instead of bread crumbs. Let me tell you, those pretzel crumbs created a wonderful golden brown color and crunch-two things that David looks for in a crunchy food. They were a big hit.

Ok, so we're on day three and they have been no problems and David hasn't been jonesing for a grilled cheese sandwich. Ok, so far, so good.

My Obervations

David has been having three or more bowel movements a day since Sunday. Could that be because of the beany soup? Or is his body excreting something that doesn't agree with his body? Because of the bean factor,there is no clear answer.

During David's bath time last night, he noticed the hose for the shower head. He's been taking a bath in that tub every night for the last 21 months and he has never noticed that hose before. Coincidence or diet?

On Monday at school, David's teacher reported that he was saying "key key" with a purpose. He doesn't say much with a purpose. We don't know what key key is.

David has another layer of sounds. There are about 5 new ones that he hasn't used before and has been using consistently for the last two days.

David has followed two direct requests from me. That is a rarity.

Those are my observations after, what now, is the beginning of day 4 of the GFCF diet.

I Feel Like Baking A Cake

2009-02-05T09:34:00.002-05:00

I feel like baking a cake to celebrate David's special day!

David has been making more sounds recently. Sounds that sounds more like pre-speech. One of his phrases is "nica nica" He says it all the time. I say it with him.

I now know that nica nica has a meaning.

This morning David removed his Pjs and diaper all by himself and stood in the middle of the room and announced-

Nica Nica Yay! (Naked, Naked, Yay)

Yes, being naked is great. But naked boys can't ride the school bus. So I made him get dressed after we did the nica nica dance of course.

David's teacher just called. I thought he was ill or something.

David's teacher wanted to call to tell me that David participated in circle time independently for the first time EVER! He imitated, he danced, and he sang. After circle time, during his ABA session, he was given the choice of four Starburst candies. He chose one. His teacher took a small corner from the wrapper, gave the candy to David who was able to open the candy all by himself and he placed it in his mouth! Normally, David would take all of the candies and try to eat them through the wrapper.

Awesome, right?!

Small victories mean so much.

Keep Your Shirt On

2009-02-03T00:12:00.002-05:00

Really, David. Keep your shirt on.

The naked phase has returned. David does not want to wear clothing when he is home.

He now enjoys taking his clothes off, climbing on the dining room table, turning on the overhead light and ceiling fan, and just luxuriating under the fan in all his nakedness.

Was that a run-on sentence or what? Keeping David clothed and warm has me running.

Now, anyone who lives on the east coast knows how cold this winter has been. And anyone who has to heat their home with gas knows how expensive that can be.

See my dilemma?

David AKA Nature Boy wants to be naked under a running ceiling fan. It's 20 degrees outside and I'm trying to keep him and the house warm.

It's been an ongoing battle.

On the one hand, I'm happy that he is able to climb. I'm happy that he notices the strings that need to be used to turn on the light and ceiling fan.

On the other hand. It's freakin cold in here!

So, David, please KEEP YOUR SHIRT ON!

Food For Thought

2009-01-27T08:40:00.002-05:00

Have you seen this?

REPOSTED WITH PERMISSION from Autismlink.com

Much High Fructose Corn Syrup Contaminated With Mercury, New StudyFindsBrand-Name Food Products Also Discovered to Contain Mercury http://www.iatp.org (A list of products and the study can be found here:http://www.healthobservatory.org/library.cfm?refID=105026) Minneapolis – Mercury was found in nearly 50 percent of testedsamples of commercial high fructose corn syrup (HFCS), according to anew article published today in the scientific journal, EnvironmentalHealth .

A separate study by the Institute for Agriculture and Trade Policy(IATP) detected mercury in nearly one-third of 55 popular brand- name foodand beverage products where HFCS is the first or second highestlabeled ingredient—including products by Quaker, Hershey’s, Kraftand Smucker’s.

HFCS use has skyrocketed in recent decades as the sweetener has replaced sugar in many processed foods. HFCS is found in sweetened beverages, breads, cereals, breakfast bars, lunch meats, yogurts,soups and condiments. On average, Americans consume about 12 teaspoonsper day of HFCS. Consumption by teenagers and other high consumers can be up to 80 percent above average levels. “Mercury is toxic in all its forms,” said IATP’s David Wallinga, M.D., and a co-author in both studies. “Given how much high fructose corn syrup is consumed by children, it could be asignificant additional source of mercury never before considered. Weare calling for immediate changes by industry and the FDA to help stopthis avoidable mercury contamination of the food supply.”

In the Environmental Health article, Dufault et al. found detectable levels of mercury in nine of 20 samples of commercial HFCS. Dufaultwas working at the U.S. Food and Drug Administration when the testswere done in 2005. She and co-authors conclude that possible mercurycontamination of food chemicals like HFCS was not common knowledgewithin the food industry that frequently uses the sweetener. While theFDA had evidence that commercial HFCS was contaminated with mercuryfour years ago, the agency did not inform consumers, help changeindustry practice or conduct additional testing.

For its report “Not So Sweet: Missing Mercury and High FructoseCorn Syrup ,” IATP sent 55 brand-name foods and beverages containing HFCS asthe first or second ingredient to a commercial laboratory to be testedfor total mercury. Nearly one in three products tested contained detectable mercury. Mercury was most prevalent in HFCS-containingdairy products, followed by dressings and condiments. Attached is thesummary list of the 55 products and their total mercury content. In making HFCS, caustic soda is used, among other things, to separate corn starch from the corn kernel. For decades, HFCS has been madeusing mercury-grade caustic soda produced in industrial chlorine(chlor-alkali) plants. The use of mercury cells to produce caustic soda can contaminate caustic soda, and ultimately HFCS, with mercury.

“The bad news is that nobody knows whether or not their soda or snack food contains HFCS made from ingredients like caustic soda contaminated with mercury,” said Dr. Wallinga. “The good news isthat mercury-free HFCS ingredients exist. Food companies just need agood push to only use those ingredients.” While most chlorine plants around the world have switched to newer,cleaner technologies, many still rely on the use of mercury cells. In2005, 90 percent of chlorine production was mercury-free, but just 40 percent of European production was mercury-free. Four U.S.chlor-alkali plants still rely on mercury cell technology. In 2007,then-Senator Barack Obama introduced legislation to force the remaining chlor-alkali plants to phase out mercury cell technology by2012. The Environmental Health article by Dufault et al. can be found at:www.ehjournal.net .“Not So Sweet: Missing Mercury and High Fructose Corn Syrup,” byDavid Wallinga, M.D., Janelle Sorensen, Pooja Mottl and Brian Yablon,M.D., can be found at: www.iatp.org .IATP works locally and globally at the intersection of policy andpractice to ensure fair and sustainable food, farm and trade systems.www.iatp.org .

The Year of Biomedical Intervention

2009-01-18T16:39:00.002-05:00

We have arrived.

It's been three plus years of therapies. ABA, PT, OT, Speech, and Oral Motor.

Three plus years of waiting for that breakthrough. That "something". That moment when I know everything is going to be alright.

Three plus years.

My husband and I have talked about biomedical intervention in the past. We don't know where to turn for guidance. We don't know which experts to believe. When I say experts, I am not talking about doctors because so far, they have failed David miserably.

We did take David to three doctors last Tuesday. A gastroenterologist who is based at the Autism Center of New Jersey. A Neurologist who is on one of those "Top 100" list and his Pediatrician for his state mandated flu shot-don't get started.

Too late! That @#$@# flu shot made David sicker than a dog. Fever of 104 for two days complete with vomiting, runny nose, cough, COME ON!!!

Sorry, I digress.

The neurologist diagnosed David with ADHD. He prescribed a Ritalin patch. My husband and I were all set to try it. Until I started reading a book called The Hyperactivity Hoax. How to Stop Drugging Your Child and Find Real Medical Help. By Sydney Walker III, MD.

I haven't finished reading the book yet, but in a nutshell, Dr. Walker's thesis is that ADD/ADHD do not exist on their own, meaning there is an underlying problem that causes the ADD/ADHD symptoms. Diet is the main cause. Not the only one, but one worthy of discussion and thought.

The gastroenterologist that David saw ordered blood work and stool testing to check for food allergies/intolerances and bowel disorders. She suggested that we try the GFCF diet because in her research it has been shown that many kids on the spectrum do in fact have trouble with gluten and casein even though allergy testing is negative. It can't hurt to do the diet and we feel better prepared to initiate the diet than we were a year ago.

Back to the neurologist and the Ritalin. This neurologist, who shall remain nameless, held the position that ALL children with behavioral problems can benefit from medication.

Do I believe that? Should I believe that?

This is one of the dilemmas we parents of ASD children face. Who do we believe? What do we believe?

Today, I consulted with David's teacher and the behaviorist who was added to the team. The behaviorist told us that behaviors can be changed with training and medication is not needed solely to alter behavior.

Do I believe that? Should I believe that?

More uncertainty.

So we are taking the safest course. Diet,behavior modification, and dietary supplementation.

Since David was so ill last week, I was able to get a lot of reading in. Mostly while David was clinging to me, coughing on me, or vomiting down my t-shirt. I told you all I was Ninja Mom didn't I?

I was able to read Jenny McCarthy's Mother Warriors. In this book she speaks about biomedical intervention and how children have "recovered"

Do I believe that? Should I believe that?

The thoughts just go around and around. I want to do everything that I can to help my son. We all do. How do we know what is right? Whom do we trust?

We hear the stories all the time.

My child didn't speak until we gave him X. Within days of starting X he looked me in the eye and said I love you for the first time ever! He also told me never to make him eat bologna again because he hates it but he really enjoys kiwi!

I so want that. I so want an X to recover my son. Recover isn't even the right word with David because recover implies to be brought back from something. David has always been "there" He has never been outside of "there" So does that mean, for kids like David, that there is no way to make him whole? Is he not considered whole because this is where he's always been and who he has always been? Maybe for kids like David we should hope to have him defragmented.

I don't know. I don't even know if I'm making sense right now.

The entire biomedical intervention issue has really caused me to think.

How do we know which interventions are appropriate for an individual? Would a child like David, who was born with Autism benefit from the same interventions as a child whose autism was caused by vaccines? And what about those whose autism was caused by an environmental factor? And what about those who are can't stand to be touched or can't tolerate sounds? What about that?

See how this goes? Since we don't know what caused Autism absolutely, how do we know absolutely which intervention is appropriate?

That's why it's 1:34 am and I can't sleep.

David Is Four! Can You Dig It?

2009-01-03T22:16:00.002-05:00

My baby boy turned four today!

He had an awesome day.

He was so David. He loved the attention. The gifts, the food,( He ate a chicken soup sandwich and some of Momma's "If you don't know you better ask somebody chili") and the Happy Birthday Song that was sung many times because he just loved it so much.

Can you dig it?

Yes, I can!

He was so aware of the celebration today. A year ago not so much. He was aware of the Elmo Happy Birthday banner hung in his honor. He was aware of the family that gathered to celebrate his special day. He accepted hugs and kisses, even from his niece. He attempted to blow out his birthday candle and he tried to show us that he is four with his fingers. He couldn't quite figure out how to show only four fingers, but he tried and that was so special.

Happy Birthday, David.
Can you dig it?
Yes, you can!

HAPPY NEW YEAR!!!!

2009-01-01T16:47:00.002-05:00

Happy New Year Everyone!

The holiday season is over. Our Christmas tree has been put away. I'm waiting for Monday so my Davids can return to school and I can have my house back!

This past holiday season has memories both good and bad as all holiday seasons do for me.

I did not celebrate Christmas with my Davids. After some thought, we decided that I would join the family for dinner and the Davids would stay home. It was the right decision.

Dinner was held at the home of my husband's sister and her husband, you remember them, M Squared.

Maria had her home decorated so nicely. There was a nativity scene on her coffee table. That nativity scene would have been no more once David got his hands on it.

The holidays can be difficult. We now have to decide if we are going to family functions as a family, if we are going to family functions as part of a family or if we are declining family celebrations all together.

David doesn't yet have the skills to know what he should touch and what he shouldn't. He can not sit quietly and play with toys or another child. He has no interest in another child. When we are in a home that is not his, he is in constant movement mode. He will want to climb stairs, open and close doors, push the TV off of whatever it is perched on. Walk in a pattern all over the house while dragging me or his father by the hand.

These behaviors do not make us the most desired guests.

No one complains of course, they're family. It's just not much fun for either my husband or myself to spend hours being dragged by the hand or making sure David doesn't hurt himself or damage anything.

I knew that nativity scene would have been toast in thrity seconds. The neatly wrapped presents would have lasted another ninety seconds- tops!

It's hard to have to make choices about what we can do together. We have not been to a movie, or a play, or a children's story hour. We're not there yet. Maybe one day we will be, but not yet. Maybe the new year will bring more skills to David, more tolerance of places that he doesn't control and more stamina for us to be able to keep up with him for longer periods of time. Right now,our maximum is two hours, one hour for each of us.

We can only hope.

Today It Is Christmas!

2008-12-25T12:53:00.003-05:00

David is playing with his Christmas gifts.

This year, so far, he received a Leap Frog drum which is pretty cool. It has several functions. One of them is when the top is tapped, the letters of the alphabet appear and the drum says the letters. In English or Spanish. David really likes it. Daddy brought him a Hess truck. David thinks it's more of an airplane because he throws the truck more than anything else. I also brought him a pair of beginner roller skates.

I'm going to teach David to skate.
I hear you all laughing!

I think skating will be something he enjoys. Skating involves movement and lots of it. David can't sit still, thus my rationale. The set came complete with elbow and knee pads. He already has a bike helmet, so we're good to go.

We had a family dinner last night and it was good to have family here with us. The dinner I made was mad tasty is I do say so myself.

Simple things like setting the dinner table just takes extra planning. For instance, I can't put the tablecloth on the table until David is secured in his high chair because he likes to get up on the table and roll himself in the table cloth. It's tag team dining at it's best.

Today we're going to the home of my husband's sister, Maria and her husband, Melvin. You remember them? M Squared.

My husband was saying the he almost didn't want to go because it's too cold to take David outside when he just can't handle all the people and not being in his own house. I said we'll just show up a bit late, put David in his high chair immediately if not sooner and bring some toys that he can play with. It may be fine, it may not.

It is Christmas and my father-in-law's birthday (Happy Birthday, Pops!) David should be included in this day, even if he chooses not to participate.

Days like this are hard because we don't know what we're going to get. David may be all about cooperation or he may be all about melting down and screaming because he can't handle the people (his family) in a place where he doesn't reign (his own home)

In the words of Forest Gump, "Life is like a box of chocolates, you never know what you're going to get"

Merry Christmas to all and to all a Good Night.

PS- David LOVED the roller skates. He did really well for his first time. My back is sore and so are David's legs, but I see lots of roller skating in our future!

Thank You, John Kirton

2008-12-20T15:27:00.002-05:00

I had a very pleasant surprise today.

John Kirton called me!

Who is John Kirton you may ask...

This is John Kirton

www.autismbites.com

John has six children with autism. He took the time to call me to give me helpful security hints for David.

I think Dutch doors are the way to go!

It really touched me that John would take the time to call. We talked for a while. I lost track, but it may have been an hour. He was so generous with his advice and experience. He even shared stories about his family with me.

Today is really special because of his call. Robin, the Mom, was able to offer input as well, but someone had to hold down the fort while Dad was on the phone.

Thanks again and I will be sure to pay it forward!

Knock Knock

2008-12-17T22:32:00.002-05:00

Who's there?
The Terrible
The Terrible Whos?
Not The Terrible Whos..THE TERRIBLE TWOS!!

The Terrible Twos have arrived at my house in full effect.

David is almost four, but developmentally he is almost two. Thus the terrible twos have arrived right on time and in full force.

Whoa. It's been twenty years since I lived with a terrible two. David's sister, Kayla had her terrible two period. The difference being that I could reason with Kayla. Well, as much as one can reason with a two year old.

David's terrible two is, well let me just say more of a challenge.

I've got news for you son. I'm bigger, stronger and faster. I am super stealth ninja Mom!

Oh who am I kidding? That boy wore be out tonight!

He had an ABA session with his teacher after school. He was openly defiant. No, more like dementedly defiant.

He spit his juice at his teacher, pulled her hair, clawed at her face and tried to bite her. All while making great and sustained eye contact.

Defiance. My son is now known as David the Defiant.

I wonder if that will replace his other nicknames:

Dr. David Destructo
Harry Houdini
The Flying and Falling Wallenda

It's a phase. I know this too shall pass. Can it pass by Sunday?

Sucker!

2008-12-09T10:08:00.002-05:00

So, we've had to upgrade our security measures for David.

We have baby gates to keep David safe. David can open all the baby gates. He likes to go into the kitchen and get into the fridge. He has to check out how the magnets in the door keep the door closed. He wonders if the light stays on once the door is closed. He likes to open and close all the doors and drawers in the fridge-Open, close, open, close. He likes to open and close all the drawers. The knives have been removed long ago. He likes to open the microwave door. Open. Close. He likes to lock the oven and turn the oven on.

Keeping David out of the kitchen is a code red priority.

Apparently, the baby gates that we have are the ultimate in baby gates.

My husband purchased hook and eye locks to add to the baby gates. The hook and eyes have a sliding sleeve that provide extra security.

Yeah, right!

Last night, I heard the baby gate open after I locked it and put the hook and eye in place. I thought I didn't set the hook and eye properly, so I put David back into the safe area and I re-locked the gate. A few minutes later, I heard the gate open again. Again, I thought I didn't lock it properly. I re-locked it again, put David back into the safe area and I walked around and climbed over gate from the kitchen to the dining room and just watched David at the gate. I did place the hook and eye properly. David understands how the sleeve works and off it came.

Me: "David, you know how to do that?"
David: "Sucker"

Mmm. ok, my son called me a sucker.

How do I keep this kid contained to a totally child-proofed area of my house?!
If anyone has any suggestions, I'd be glad to hear them.

Click on the Radio Show Icon

2008-12-05T22:35:00.001-05:00

Tonight's Radio Show is loaded and is ready for listening!

Radio Show Rescheduled

2008-12-04T20:46:00.001-05:00

The next radio show will be tomorrow night at 9PM Eastern Time.

I'm sorry for the delay.
I hope you can join me tomorrow night!

THE RADIO SHOW IS BACK!

2008-12-03T23:16:00.001-05:00

I'm doing a new show on Thursday, December 4th at 9PM Eastern Time.

I hope you can join me!

I Need a Security Director

2008-12-03T20:28:00.003-05:00

My house looks like a prison. There are baby gates and security systems everywhere.

My security measures can no longer hold David.

Visitors to our home can not open the baby gates. David can.
He can also open windows and peel back the weather stripping and chew on it. The windows all have the usual sliding locks as well as the tether locks located in the frame. David uses his thumbnails to unlock the tethers.

This is a kid who can't hold an eating utensil during a meal, but we are hard pressed to find a lock that he can't manipulate.

My husband has these fancy smancy and very expensive stereo speakers that David was using as surfboards to surf the swells of the living room ocean. My husband has bolted the speakers into the walls using anchor clips. Each day, David spends a little time investigating these anchors. I know it's just a matter of time before he discovers how to unlock them. It's kinda cute to watch him. He looks at the anchors from every angle that he can. He runs his fingers over them. He experiments with the distribution of weight and how it affects the placement of the speaker and the tension on the anchor.

And this is a kid who can't hold an eating utensil during a meal.

When David and I are out in public, I typically have him in his stroller. He's almost 4, too old by the standards of most parents, but hey, it's a security measure. Lately, David has been placing his feet on the wheels of the stroller, making it very difficult to push. It's difficult enough to push a 55 pound kid in a stroller anyway, so I scold him and remind him where his feet should go. I finally noticed that he is putting his feet on the wheels because his legs no longer fit on the footrest with the gate down.

I apologized to David for scolding him.I'm sure he's uncomfortable with his feet on the foot rest. So, I am now in need of a new security vehicle. An all terrain, can hold a big kid type security vehicle.

My Mother In Law gave me a leash for David. It's one of those padded deals where one end goes around the wrist of the child and the other around the wrist of the parent or caregiver. His end wrapped and went through a loop. I thought, Hooray, no more stroller. This will work and will also allow David to have more independence. David checked out his wrist, unwrapped the loop and handed me his end before we even made it out of the front door. He then had the nerve to give me his " I don't think so" face.

It's getting more difficult to control David in public places. The stroller works great, well once I get another one for his size. But the stroller doesn't allow for independence or for the development of social and behavioral skills. One one hand, that is not a good thing. On the other hand, David is big enough and strong enough to knock me down and he has. I can still take him in the 50 yard dash, but a lot of damage cam be done in that 50 yards.

This is just another thing. I get the stares and the side of the mouth comments about having such a big boy in a stroller. I get the stink eye from the proprietor of our little corner store when I take David there sans stroller. I don't care a hoot about that at all. What I care about is keeping David as safe as possible while allowing him to develop independence and social skills. He's almost 4, not a baby anymore-sniffle-.

Maybe I can put him in a bubble.

Happy Thanksgiving Yet Again!

2008-11-26T13:09:00.002-05:00

The Holidays Season is here once again.

A lot has happened since last Thanksgiving.

Gas prices went to European high levels
Bank Failures
Job Losses
President-Elect Barack Obama
David Noticed Santa's Village and Santa Claus

Yes, he did. David noticed the faux trees and the elfen magic of Santa's Village.

He had that wide-eyed, open-mouth with gasp of amazement.I wanted to let him sit on Santa's lap, but thought better of it. I knew Santa would be minus one beard and one hat. I wouldn't want to put David on the naughty list.

I'm thankful for all the changes and progress that David has made during the last year.

Ok, that's not exactly true. I could really do without him noticing certain things. Like, how my roman shades are connected with Velcro to the installation bar with the really neat sound that Velcro makes when it's pulled and how the roman shade makes a very cool cape. Yeah, that one I can do without.

I don't like having to keep a tool handy to put on my bras.
Get your minds out of the gutter. It's not like I need a fork lift or anything.

David likes to smash the closures of my bras with his teeth. When I go to put one on, the hooks are smashed and I can't open them with my hands, thus the need for a tool. A tortoise shell manicure tool works nicely.

There's a great hiding place somewhere in my house. It's so great, I don't know where it is. It's the hiding spot of the missing socks. I estimate there are 10 pairs missing. My house is small, David has access to a limited part of it. He has found one really great hiding place. Maybe one day, he'll tell me where it is.

I had to take David to have some x-rays taken yesterday. When the in-take clerk pulled up David's records, she found that David did not have a visit to that hospital in more than a year. Whoo Whoo! One year without an ER visit for our very busy boy- Yes, I am knocking wood right now.

I'm thankful for David's teachers and therapists. Past and present. Without their dedication, determination, and drive, I don't know where we would be today.

I'm thankful for the other families out there in Autism Land. The ones who take the time to let the rest of us into their world with unabashed selflessness. Thank you so much.

I'm thankful for the media. For reporting on Autism issues with facts and making Autism a human issue.

I'm thankful for my family. For supporting me and my family all the time.

I'm thankful for David. Without him, I would not be complete.

The Passage of Time

2008-10-24T09:58:00.004-04:00

I've been blogging for close to one year now. Where has the time gone? It seems like my first post was only yesterday.

With the passage of time comes change.

David has changed quite a bit during the last year.

He no longer eats Oat-Meat. Meals are now contained in a sammich. Not a sandwich, but a sammich. There is a difference. A sandwich can be big and robust. A sandwich can have the items contained between the slices of bread hang out a little bit. If some turkey or cheese is hanging out of the sides, that's cool. With a sammich, Momma- that would be me- tucks meats and veggies between the slices of bread, making sure that the only item visible to David's now oh so detail oriented gaze, is the cheese. Sammiches are fine. A lovely roasted chicken and veggie dinner can be made into a sammich with cheese. However, if an errant green bean should be seen then I get the look...

David didn't have facial expressions until recently. He would laugh and cry of course, but emotional expression of the face just wasn't happening. Now he has what I call the "Oh hell no" gaze. That's what I get if he should see a green bean, or anything green hanging out of his sammich. His face very clearly says, " Oh hell no I'm not putting that into my mouth!"

It's a lovely thing, those facial expressions.

David no longer cries and screams in the grocery store. Now, David thinks the grocery store is his own personal Carnegie Hall.

"Ladies and Gentleman, it is Shop-Rite's honor to introduce to you the one, the only David"

The grocery store causes David to sing. Sing and sing loudly. I'll take that over crying and screaming any day of the week.

David doesn't use words when he sings. He still uses Uhh and Ahhs and gurgles. The grocery stores have some pretty decent Muzak so I sing along too. Since I hate grocery shopping, singing is a good way to pass the time and lessen the shock at checkout.

Old MacDonald now has more animals on his farm. In addition to the duck, he now has a dog and a chick.

My house looks like Fort Knox. Baby gate city. David now knows how to unlock the baby gates and the front door. Our security level is now at Red. There will be more security items in place by the end of the day tomorrow.

David does some talking. I know that his favorite number is 13 and his favorite color is green. When I tell him to stop doing something, he has said, "make me".

Now, if his older sister had said "make me" when she was his age, I would have been all over that like thieves on Wall Street. I just turned around, happily and silently celebrating the fact that he said,"make me" and he said it appropriately.

Then I was all over that like thieves on Wall Street.

Discipline is one of my greater challenges. When David does do something that he shouldn't I celebrate that he is doing the something. Two years ago he was the kid who sat all day spinning things that spin, open and closed things that open and closed and that's all he did. THAT'S ALL HE DID. So first I celebrate, then I have to decide in a split second whether or not the something that he did earned a time out, or if I should ignore the behavior. In a split second.

Some days I feel like Robo-Mom. What mom doesn't, right?

I was working outside of the home, but now I'm not. I'm back in the looking for a job category. Looking for a job in a really bad economy. That sucks.

School is going really well for David. The staff at his school know and get David. If something in his IEP isn't working, it is changed quickly and with David's best interest directing the change. The yearly IEP review is coming up in a few weeks. It's been a year already. Time is marching on!

Autism has been mentioned by both of our Presidential Candidates. That didn't happen four years ago. There are documentaries that air all during the year and not just in April. Good Morning America had a segment just the other day with Dr. Tim Johnson about Myths in Autism. Education and Outreach are working. There is still more to do.

With the economic welfare package, I mean stimulus package to businesses, you know cuts are coming to Health and Human Services and Education. Please know your elected officials and let them know NOW that cuts to special services to our kids are not acceptable and will not be tolerated.

DON'T FORGET TO VOTE,TUESDAY NOVEMBER 4!

Things That Keep Me From Snoring Through The Night

2008-10-05T20:51:00.004-04:00

Like most people, I have been having some trouble sleeping lately. I can blame that on a few things.

The economy is number one on my list. With all the money going to bail out commerce, where is the money going to come from for special services? You know when times get tough, human services get hit and get hit hard. Our school system had to make painful cuts to its autism and special ed programs. I don't want to think about what could happen. If our legislators can vote to give friggin NASCAR and the like a piece of the 700 Billion Dollar Pie...

http://sports.yahoo.com/nascar/blog/from_the_marbles/post/The-U-S-Senate-shows-NASCAR-a-little-bailout-lo?urn=nascar,112189

... they had better not cut one dollar from education.

Sigh...let me change the subject.

The Kirton Family http://kellyyatesrice.blogspot.com/2008/02/kirton-family.html

The Kirton Family is being featured in a documentary that is currenly airing on Discovery Health Channel. It's called Autismx6. All six of their children are on the spectrum. See health.discovery.com for airtimes.

I watched the program with my husband. One of their sons likes doors just like our son does.

I have another IEP meeting this week. David has been in school since January of this year. I think this week's meeting will be number 5.

David is really making progress. He's starting to make more sounds and more approximations of words and more actual words. David's teacher reported that an aide was prompting another child to say "water" I guess David grew tired of hearing the word,so tired in fact that he decided to say "water" Everyone was very happy for him. One morning, David held my face in his hands and said, "Morning Mom" I cried with joy. I was texting everyone on my way to work. The phrase "Damn it" is in his repetoire. I can't even be cross with him because he uses it appropriately!

David is also more independent. He will help with dressing. He's pretty good at putting his shirt on.

I attended David's back to school night. Two other parents were there and we were discussing with the teacher our wish for potty training. None of our sons are trained. The teacher told us that the boys are being introduced to the toilet. David being David is more interested in how the toilet works than in how his body works in conjuction with the toilet. I'm hopeful that he will be trained one day. Hopefully before puberty. Way before puberty.

Then there's the whole mainstreaming issue. I know, we're almost 2 years away from that. Here's my worries. I don't want David mainstreamed because IEPs are designed to give those with special educational needs the right to an education in a non-restrictive environment. I want David to be mainstreamed because he has something to offer that experience and that experience has something to offer him. Yeah, I get the opportunity for social interaction. David has autism. His autism makes people unimportant. Relationships with people will never be important to David. If that is all the mainstreaming experience can offer him, then that's not enough. I don't want my son to be the pink elephant in the room. I know that sounds cruel, but really,if my son is not developmentally developed enough to be able to sit in a classroom with other students his age and participate in the same educational activities then I need to find opportunities more appropriate for him. I think I'm going to lose many hours of sleep over the next two years about this issue.

It Is Not Necessary To Get Eye Contact From Everyone I Meet

2008-08-24T20:21:00.002-04:00

I feel like I exist in two different worlds. The world of Autism and the Outside world.

In the world of Autism, part of my job is to get my son to make eye contact with me. BY ANY MEANS NECESSARY. This includes, but is not limited to:

Chin holding
Singing
Tickling
Tracking with edibles.

In the outside world, eye contact isn't always a good thing. I work in New York City. In Hell's Kitchen, Midtown Manhattan proper. That is NOT a place where one wants to make eye-contact with strangers. In this place in the Outside world, walking with your game face keeps one safe and sound. My existence in the Autism world stops when I get off my commuter bus at Port Authority Bus Terminal.

At work last week, my two worlds almost collided. Some of my co-workers interviewed a young man who was very shy. When I was introduced to him, we shook hands but he never looked at me. I had to stop myself from taking hold of that young man's chin.

The two worlds. They must stay separate.

I'm Sorry I've Been Away So Long

2008-08-09T13:21:00.002-04:00

So much has happened!

I was looking for work and I'm pleased to announce that I have a job! I work in NYC for a lighting designer and I really like my job. Now I am a working mother again! Feels good!

I have to give props to my husband. My husband is taking care of business. He keeps David on a schedule,he has worked with David so that he now sits during meal times and he started working with him to use utensils when he eats and he's doing an AMAZING job. Just this morning, David used a fork to eat his waffles. Let me not forget to mention the home cooked meals I've been coming home to. Last night he made lemony/buttery chicken with capers, rice, and cabbage. It was so delicious.

David completed his summer session this past Wednesday. At his initial IEP meeting, we talked about having home instruction during the summer break and the winter holiday break. I didn't receive a call or any paperwork regarding that. My husband went to the school. He spoke to David's teacher and physical therapist. Very long story short, there is an IEP meeting scheduled for Monday to amend what is written and David will have home instruction. Now, that's the way things are supposed to work. Proceed in a manner that is in the best interest of the child.

We are very fortunate to have a school system that does work for the children. Our goals are mutually inclusive and that's the way it's supposed to be. I have had conversations with other parents who have shared stories of difficulties getting just the very basic of services for their children. Everyone who works with David goes above and beyond for him and I am so grateful.

We have seen improvement in David. He is much more aware of the world around him and he is now taking an interest in that world. He wakes up every morning singing. He is physically stronger and less prone to tantrums. He didn't get to where he is now simply with the passage of time. He has arrived through his own efforts, the efforts of his parents, teachers, therapists, and loved ones. With our children, everyday is work. We don't have the luxury of taking anything for granted.

Just a little something about Michael Savage:

http://mediamatters.org/items/200807170005

Ok, Michael Savage is a right-winged shock jock.

Do I care what he thinks? Nope

His comments were as hurtful as they were ignorant. I feel sorry for his ignorance.

Britney Spears- I read this week that there is a concern that her younger son is on the spectrum. I think it is important to note that this is newsworthy. Would it have been three years ago. Autism education and awareness is working.

Hazy, Hot, and Humiliated

2008-06-11T21:57:00.003-04:00

On Sunday I had to go to the grocery store. I had to take Layla, my eleven month old grand daughter, and David with me. I knew the trip would be an adventure, but I had no idea!

I put Layla in the front of the cart,facing me and strapped in. That is David's usual spot so I knew he would be annoyed and he was. I tried to put him in the cargo part of the cart and he protested so I asked him if he wanted to help me push the cart.

He was ok with that until we got to the store entrance.Then I put him in the cart because he was slowing traffic.

He didn't want to stay in the cart. He kept standing up.Then- the kid who walks badly- managed to jump out of the cart with the grace of a gymnast. His dismount was perfect. He landed on both feet.

Then he decided to become a sprinter. I have never seen him run so well. He ran from the produce section to the meats. I asked him to stop, I begged him to stop. I demanded that he to stop!

Half way down the meat department I finally caught him. He fought to get down because he wanted to run some more. I tried to put him back in the cart until I could move to an aisle to switch him and Layla. The main aisle where the meats were was full of people. This grocery store is always crowded.

David wasn't having it. He was angry that I made him stop. He turned,put his hands in my pockets and pulled my pants down!

The waistband of my pants came down to just above my knee, so there I was, with my pink Fruits of the Looms totally exposed to the meat department!

I wanted to kill him! I managed to get my pants up, slink away and switched the cart seating arrangements and walked as far away from the meat department as I could.

Ya know how you go to a local grocery store and you usually run into someone you know? Of course I had to run into someone. The secretary at David's school! I don't know if she saw my panties or not.

Baby Jamz and Love

2008-05-27T08:56:00.003-04:00

Matthew Knowles, Beyonce's Dad, has a hip-hop inspired musical toy line for tots.

My grand daughter arrived this morning and her Mom, my daughter, was carrying this musical chair. It's cute and colorful. It has large buttons and plays music. Sort of like Old MacDonald, the re-mix.

Layla, my grand daughter just loves her chair and she wanted to share it with David. Old MacDonald is his jam!

There is just one itsy-bitsy little problem. We know in David's version of Old MacDonald, the farm contains one animal and one animal only.

The Duck.

The Baby Jamz version has two animals. The Cow and The DAWG.

That's right, The DAWG.

David kept slapping the Old MacDonald button and demanding the that chair acknowledge The Duck. The chair just didn't get it.

So of course I had to remove the chair, which caused David and Layla to cry for a minute. Elmo easily replaced the chair, which is good because David is home sick today- YES, AGAIN! and he is cranky.

Layla loves David and David loves Layla. Layla is 11 months old. David is three.
They have many things in common.

The love of Elmo.
The need to put EVERYTHING into their mouths.
The need for me to explain EVERYTHING
The need for me, the Mom and Ghe-Ghe respectively, to sing and dance like a lunatic.

Layla gets upset when David doesn't say hi to her. She is able to say hi to him. So I tell her that he doesn't speak, but he loves her just the same.

I know that he does love her. How do I know?

He makes sure she gets enough Cheerios and the clincher....

He shares his Blankie with her!

Blankie was a crocheted square. Now only the outside edges remain. David will let Layla have a corner. That is huge because he shares Blankie with No One.

Now, that's love.

Melanie Roach

2008-05-17T17:57:00.002-04:00

I know. You're asking who is Melanie Roach!

She's only my new heroine that's all.

Melanie Roach is a 33 year old mother of three. Her son, Drew has Autism.

Today, Melanie Roach earned a spot on the U.S. Olympic Weightlifting Team.

Check out her website: www.melanieroach.com

Congratulations Melanie!

We Must Make Time for Ourselves

2008-05-14T13:59:00.002-04:00

Motherhood means that having time for yourself is a luxury that doesn't happen everyday. It also means that doing something just for you and not your husband, kids, significant other or life-partner is almost impossible.

The thing I love doing most in the whole wide world is reading- Ok, it's not my favorite thing, but it's the thing I'm going to share with all of you.

Reading has always been important to me. I learned to read when I was four. Grown-up books. Books without pictures.

I have an older brother, Leon. He is four years older. He was the other reader in our household. Everytime I saw him reading, I begged him to read to me. From grown-up books. Not baby books with pictures. One day, he was done with my begging and announced that he was going to teach me to read.

Some forty years later, I still remember that book. Who Goes in My Garden by Ethel Collier. I remember the green hard cover. I remember it's slightly musty odor. I remember my brother pointing to each word, saying the word and having me repeat the word. He read that book to me until I could read the words back to him.

Teaching me to read was the best thing that anyone has ever done for me.
Thanks Bro!

Since that day, some forty years ago, I have read something everyday. A magazine, a brochure, a newspaper. Something. Every. Day.

Expect for the what I now call the Dark Period. The first two years of my son's life. There was no reading of books. There was no reading of magazines. I was able to read the headlines from my local paper online, but that was it.

I don't regret the Dark Period. It was necessary. My son needed me.

I needed to read. So I started reading again on my birthday last year. I gave myself two presents last year. A mammogram and a library card. Both of those gifts can save a life...mine.

We must make time for ourselves. Reading, going for a walk ALONE, getting a mani/pedi. Whatever it is you need to do for and by yourself do it.

Our children will not suffer if we are not with them 24/7. We don't need to feel guilty for getting that mani/pedi or reading that book. I think it's important to give ourselves a time-out sometimes.

Blooming Flowers and Falling Axes

2008-05-03T14:16:00.004-04:00

Spring has finally arrived in New Jersey. The pinks and greens, purples and yellows are all blooming and lookin' good.

I'm glad the winter is behind us. David gets bored being cooped up in the house and so do I. Neither of us likes cold weather, so outdoor winter activities are not something we enjoy and the winter brought one illness after another to David. Hopefully the illnesses have gone away with Mr. Winter.

Spring brings school budget time in my town and this year was especially difficult. Due to the ingenious amount of thought and financial skill(insert sarcasm here) our legislators devised a new school funding formula. Because of this formula, our town will receive less funding for our school system. A lot less.

With less money, cuts have to be made. Deep and painful cuts. Our school district's special ed division had to cut 25 jobs. 7 of those jobs belong to classroom teachers. One of those jobs belongs to David's teacher.

Living in the current economy is difficult for everyone. We have the real estate crisis, crazy gas prices, increased prices at the grocery store. Our county laid off workers from the employment office.- Now, you know things are bad when people who assist the unemployed are being laid off- Times are just rough all over.

Our children will feel the crunch too. With local governments receiving less federal aide, social services will experience cuts in programs. Programs that our children so desperately need.

I'm old enough to have lived through a few recessions. I know the economy will be bullish once again. I just hope we don't have to experience too much bull@##$ until
the bull comes home.

What The Function?

2008-04-21T22:37:00.003-04:00

We often hear Autism described in terms of functionality. A person with Asperger's Syndrome is said the be a high-functioning autistic. A person with PDD-NOS is considered higher functioning than a person with a diagnosis of Autism.

I don't like those labels. I do think it is important to diagnose a person based on their symptoms and manifestations of autism but I don't think it's a good idea to label how a person functions.

I do not have Autism, at least I don't think I do. Am I considered a higher functioning human than my son because he has Autism and I don't?

David is sweet. Me not so much. David is energetic. He really has a lot of get up and go. My get up and go got up and went. In fact, I am still looking for it.

I don't think we should label our children and other loved ones in terms of functionality. Who are we to judge how another person functions? Yea, yea, I totally get that Autism is a spectrum disorder. One side of the spectrum is considered high functioning and the other side, well, not so much. Why can't we change our way of thinking and our descriptive language? Instead of high-functioning how about less-challenged? Or maybe even better, why assign a value to one's autism at all?

I think using language that gives value to functionality also gives value to the quality of life and to our children as people. I think that is damaging. I think that language can create stereotypes and expectations that aren't necessarily accurate. After all, everyone is unique and everyone has a place in this world.

My Bodyguard

2008-04-17T16:03:00.002-04:00

When we are outside, walking to wherever, David has no problem holding my hand, walking beside me, stopping at the corners and looking both ways.

When we are inside, in public, at a store or wherever, David has extreme difficulty standing beside me, standing still while I pay for a purchase, and not walking in circles or up and down aisles.

Then it occured to me. When we are outside. HE is protecting ME.

There was an incident last summer. We were walking home from the park. A group of teen boys were walking towards us. David was very unstable on his feet last summer, so we walked slowly with David stumbling or falling every few feet.

These teen boys showed no signs of yielding. No signs of clearing a path for us to pass. David flipped his arm and held it very rigidly. He turned his hand outward so the palm of his hand was facing away from him and towards the boys. David used his arm as a barrier between the boys and me. The last boys in line received a smack on the tush from David.

He's protecting me.

I guess he's thinking that when we are indoors it's safe and it's party-time! I'm safe, so therefore it is safe for him do the things that make him happy. Those things don't make the storekeepers happy, but I can only work on one issue at a time.

Sarah Silverman and her Singing Vagina

2008-04-13T23:37:00.002-04:00

Comedy Central is showing Night of Too Many Stars: An Overbooked Concert For Autism Education.

I was channel surfing and came across the listing on my cable system. I thought, Great, an Autism fundraiser. That's wonderful.

I'm sorry to say that I did not find this fundraiser funny or educational. Which is a shame because the title of Comedy Central's endeavor indicated that this would be educational.

I do want to thank all of the stars who showed up to perform and to man the phone lines. Thank you truly from the bottom of my heart. My son totally dug Maroon 5.

Which brings me to Sarah Silverman.

Sarah Silverman is a comedienne. She is most noted for her relationship with Jimmy Kimmel and their hilarious videos about her relationship with Matt Damon and his relationship with Ben Affleck- You can check these out on YouTube. During the fundraiser, Sarah did a routine which wasn't particularly funny. She did mention that her cousin has Autism and that she(Sarah) cares about Autistic kids, Hey, thanks Sarah.

But then-THEN she sang Amazing Grace and was accompanied by her singing vagina and her singing booty. Her booty sang bass in case you were wondering.

Do we really need Sarah Silverman's singing vagina to help our cause, to help our children?

The production did have vignettes of educational value, but after being serenaded by Sarah Silverman's singing vagina, who cares?

I think the people at Comedy Central had their hearts in the right place. I hope they have a fundraiser every year. I hope next year they out more thought into the cause and what is needed for our families and less, well I really don't see how there could be less thought, into the entertainment.

I would like to order...

2008-04-11T00:43:00.002-04:00

...one Scarlet Fever with a side of stomach virus and an ear infection for desert. Oh, and can I get some amoxicillin to go? Thankey.

It's been a rough week. Really rough. There was no fever today. The weather here in New Jersey was gorgeous. Our first great day of the year.

David was well enough to take a walk to the park. The park was bustling with activity. Baseball players and soccer players. In my neighborhood, soccer is actually futbol. Small children on bikes and trikes, scooters and go-carts.

This time last year, that would have sent David scrambling to the fence that encloses the tiny tots play area. He would have walked the perimeter and held on to the fence with a Vulcan death grip.

That wasn't the case during our first trip to the park of the season. He knew what he wanted and nothing was going to stand in his way.

The Swings.

David walked over to his favorite swing with confidence. He motioned for me to pick him up and place him in the swing. He motioned for me to pick him up and place him in the swing.

I noticed, David. I praised you on how well you asked to get into the swing.

After the swinging, I asked David if he would like to try the slides. The tiny tots play area is under construction, so there is only one set of swings and one climbing toy that has three slides on it. I walked with David to the slides and I attempted to help him up the steps.

Silly me. I forgot that David needs to walk under playground equipment to check it out. It wasn't to his liking, so we passed.

There is a walking track at the bottom of the park. We walked two laps, then it was time to return home. I didn't want to overdo it, being that this was a week straight out of hell in the childhood illness department.

For parents of neurotypical children, a trip to the playground is just that. A trip to the playground. No thought goes into it. You just go. You just play. You just be.
My trips to the playground involve thought and prayer. Our first trip to the playground this season allowed us to just go, just play, just be.

Autism- The Other White Meat

2008-04-02T19:29:00.002-04:00

Friends and family members ask me what about Autism all the time. Total strangers ask me about Autism. That's a good thing. Raising awareness is something that I need to do.

Since this is Autism Awareness Month I will do my best to educate as many people as I can.

We often hear autism referred to as a spectrum disorder. There is a range of individual disorders that fall under the autism umbrella. One on end of the spectrum there is Asperger's Syndrome and on the other end is severe autism. People with Asperger's Syndrome are typically identified as "high-functioning" autistics.

Autism affects three areas of development: social interaction, communication, and behavior. All three areas are affected to some degree.

Autism doesn't affect any two people in exactly the same way. Even within a family that has more than one child affected, the manifestations of the disorder can be very different.

There is no cure for Autism, but there is treatment. Applied Behavioral Analysis (ABA)is a science based treatment. There is an abundance of literature and other documentation to support its' use. ABA is a method to teach behaviors. Behavior is anything that can be seen and measured. Since our kids have problems with that area of development, ALL behaviors must be taught. That's something that parents of neurotypical children take for granted, we can't afford to.

ABA is not the magic bullet that makes Autism all better. There are no overnight successes. ABA is hard work for everyone. Everyone who cares for the person affected with Autism has to be with the programs and understand how they work and how to utilize them daily. Treatment for our kids is not limited to ABA therapy. There is physical therapy for those who require it. There is occupational therapy, speech therapy, RFI therapy, equine therapy, art therapy, music therapy, etc. Some choose to use a more medical approach with nutritional and detoxification supports.

What makes Autism unique is no professional, not a doctor, or a researcher, or clinician, can sit down with a family with a new Autism diagnosis and say, " At age 3, or 8, or 19 your child will be "here". There is no road map for us to navigate. Living with Autism is sort of like being left in the woods without a compass. You find your way the best way you can using the resources that are available.

April is Autism Awareness Month

2008-04-01T10:23:00.002-04:00

This is David's third April. His third April with Autism.

David was born on January 3, 2005. Everything about him from conception to his birth was easy. I was 41 and 9 months when David was conceived. I hadn't had a pregnancy since 1987. So I think not only was David's conception easy, it was miraculous. The pregnancy was much easier than my first. He was a manageable 7 pounds 11 ounces at birth compared to the 10 pounder I had the first time. His birth was easy, my recovery was easy. Everything was easy.

Then came day three. On that day I noticed that his eyes were dancing in his head like a bobble head doll and he was asked to leave the newborn nursery.

Yes, my son was kicked out of the nursery.

A nurse called my room and asked if I nursed my son before returning him to the nursery. He nursed just fine. I told the nurse that. She said he must still be hungry. I told the nurse that she could bring him back to me and I would nurse him again. She said, " No, you don't understand. I need you to come and get him NOW!"

Well, dang I thought. Fine. I will come and get my son.

I walked to the nursery and I could hear a baby screaming. It was mine. I stopped at the sink to wash my hands like the posted sign told me to do, but a nurse wheeled my son to me. He was screaming his head off. I wheeled him out of the nursery and down the corridor to my room.

The looks and unsolicited comments began that day.

Some other new mothers were in the hallway. Throwing comments like, " I'm glad that's not my baby" and "Umm, you are in for it"

They were right.

Over the course of the next 22 months, the questions I had about my son were answered.

Nystagmus
Congenital Hypotonia
Autism

I believe my son was born with autism. When he was an infant he never looked at me. He looked through me and around me. He didn't have many facial expressions. He didn't sleep. When I say he didn't sleep, I mean he didn't sleep. He was slow to reach milestones and at 3 years 3 months he still has some developmental milestones to achieve. He wasn't interested in people. He was interested in spinning objects and opening and closing of doors and drawers. Trying new foods was and is a major challenge for him. When he was 13 months old I tried giving him Rice Krispies. It was a favorite of his sister and I thought he would enjoy them too. I placed one, just one, Rice Krispie on his tongue and he acted like he was going to die. Today, at three years, three months he still won't eat Rice Krispies and baby food is still included in his diet. My son is a big boy. 40 inches tall and 40 pounds. He maintains his weight by eating a high carb diet. He prefers things that are crunchy so I have to hide different foods between crackers or toast. He had strange behaviors and reactions to the world. Between the ages of 10 months and 15 months he had appropriate babbling and some words. I thought, Finally! He is going to do something on time. The babbling and words went away. Just as quickly as they came, they were gone and we entered the time of silence.

We tried the GFCF diet last week. David wouldn't eat. I didn't blame him. Brown Rice and Tapioca breads are nasty and vegan cheese...please! We may try the diet again with support.

This is our third April with Autism. David's third April on Earth.

I used to look forward to April. The gray, dull, and gloomy New Jersey winter give way to bursts of vibrant colors, longer and warmer days and time out of the house.

Now, I count Aprils. Three Aprils with Autism.

Poop In The Pockets.

2008-03-20T19:59:00.004-04:00

(The following is not for the squeamish)

How is that even possible?

David had a bout of explosive poop. It must of been the power of the explosion that sent the poop into his pockets. I knew we were in trouble when I went to change his diaper and there was poop on his feet. His bare feet. Between the toes. I knew we were in trouble when he decided to get up and run around with his body still messy, with me chasing behind him with a washcloth and baby wipes.

No! David! Not. On. The. COUCH!

Thank goodness my couch is brown.

My husband came home as I had David in the bath. There were pants with poop in the pockets in my powder room sink. The living room smelled like ass. My clothes were lying in a pile in the kitchen. My husband tried to help.

By cleaning the stove top.

David kicked me in the throat while I was trying to dress him. He ran around like chicken with its' head cut off. He dumped the hamper to open and close the lid. Open and close. Open and close. He played with the air vents on the side of the hamper because they have holes all lined up neatly in rows, just like he likes them.

And then I said it. The 7 words that I swore I would never say.

" Can't we just have a normal day?"

I said them. I said them aloud. I said them to him.

The world did not end.

I had to chuckle then, because I realized that we were having a normal day. Well, except for the explosive poop. This was a normal day.

David got up at 7ish. His father helped him down the stairs for breakfast. David turned on the TV to watch ELMO. Breakfast was the standard Cheerios on a plate and a beverage on the side. I made his lunch. My husband started his day and left for work. I cleaned David up. Helped him dress. I brushed his hair. I use two hair brushes. There is a special technique for brushing David's hair. It requires two hair brushes. While he takes one from me, I have the other one ready. I can get two swipes per brush. We alternate until his hair looks half way decent. Sometimes he'll stand still while I put a little product in his hair. He didn't today. I then hold him down to brush his teeth. He doesn't like this now. He used to like to have his teeth brushed. Now, I'm lucky if I can brush the ones that show. The school bus comes at 7:50. On a good day he will just come to me when I tell him the bus is here. If there is a segment of the ELMO tape that he really likes, he will want to stay until it's over. So we may have a struggle going to the front door that doesn't end until he sees his bus.

After school we do the chit-chat thing. Except I am the only one chitting or chatting. David will greet me with a smile when I help him from the bus. Once inside he will walk right past me to watch ELMO ( I really hate that furry red monster) He will have a snack. I continue chitting and chatting. The day continues with dinner and a bath and his day ends with bedtime.

So today was a normal day. Poop in the pockets was just an added bonus.

What Kind of World Do You Want?

2008-03-13T08:48:00.002-04:00

View a video to fund autism research!

The band, Five For Fighting, is generously donating 40 cents to Autism Speaks for each time this video is viewed.

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

Check it out!

To promote the single "What Kind of World Do You Want", the lead singer for the band has launched a website as part of a fundraising campaign for various charities.

Sorry, Comcast. My Bad

2008-03-07T11:17:00.002-05:00

The cable box on the downstairs TV has ceased working three times. Three times a Comcast Cable Guy has visited our home to replace the cable running from the basement to the TV.

What I failed to mention to the Cable Guy is that the reason for their visits is because my son chews the cable.

Sorry, Comcast. My bad.

It's partially your fault, Comcast. You give us way too much cable. I have to tuck the excess behind the entertainment center and the couch. My son finds said cable and chews away. He bends it first for optimum chewing satisfaction.

Now, since my son is three, he should be taught right from wrong. Good from bad. This requires more than the statement, " No, David"

This requires the time-out.

I must say that the time-out has been effective. Yesterday David headed for the back side of the entertainment center. I told him, with my best MOM voice and use of his full name that, he knows he's not supposed to touch that cable. David quickly showed me the Lego that he retrieved from behind the TV.

He understands the time-out and the MOM voice. That's a good thing.

Old MacDonald Has A Duck

2008-03-06T08:51:00.003-05:00

My son and I have a bath time routine. After washing I let him luxuriate in the warm soapy water and I talk and sing to him.

One of the songs I sing is Old MacDonald.

Old MacDonald provides an opportunity to teach the names of animals and the sounds that they make. Teaching and fun for all.

In David's version of Old MacDonald there is just one animal.

The Duck.

I recently changed the song to encourage him to make sounds and participate with eye contact. I ask him what kind of animals Old MacDonald has.

Before four nights ago, I didn't get much in the way of participation. I got some giggles and some splashing. We have evolved.

Mommy: Old MacDonald has a farm E-I-E-I-O. And on that farm he has a....

David: Duck! ACK ACK ACK

Mommy: Duck! E-I-E-I-O

We continue the song. The only animal on that farm is the duck.

I asked David about the other animals.

What happened to the cows and the chicks, David?
He shakes his head no.

What happened to the dogs and cats?
Duck! ACK ACK ACK

Does Old MacDonald only have ducks?
David nods his head yes. Duck! ACK ACK ACK

David is a three year old who would be described as non-verbal. Because he can tell me that Old MacDonald has a duck and only ducks on his farm, I will no longer say that David is non-verbal. I will say that he is verbal when he has something to say. Something that he thinks the world should know. The world should know that Old MacDonald is a duck farmer.

I'm glad David cleared that up for us.

The Ups and Downs of Life and Autism

2008-02-19T20:33:00.003-05:00

For the first time in the history of our family, we filed our tax return before April 15th. Hippie Hooray. We had plans for that anticipated refund. Big Plans.

You know how it is when you make plans-

Since the day of learning of our anticipated refund our washing machine needed to be replaced and the car is in the shop with what will probably be an expensive transmission problem- Is there any other kind?

I have been looking for a part time job since my son started school in January. I had a phone interview for a position that is within walking distance of my house and has the hours I need. I didn't think I was impressive during the phone interview. It was my first interview of any kind in a very loooong time. I did well enough to earn a face to face interview this coming Thursday. Perhaps I've been Googled? Google didn't even exist the last time I interviewed for a job. Should I be nervous? Nah!

David had his yearly check up on Friday. His school was closed for winter break on Friday and Monday. He also needed his next round of immunizations. So, I thought I could schedule the shots for Friday, he would have his fever on Sunday, be fever free on Monday and back to school today. Nope. On Sunday I found him on the floor twitching, yes, twitching. He had a fever of 103 degrees. The fever continued. He has a virus that is going around to the little people. He's better now. He hasn't been fever free for 24 hours, so no school again tomorrow. My husband is off this week for his winter break. So my men are home this week. How did I get so lucky?

So, I've been working on my book since October. Well, I was reading People magazine one evening last week and there was a profile of a book called Autism Heroes and guess what? You guessed- the book has the same theme as mine. I felt so defeated, but I quickly got over it. I will simply turn my project into something else. These things happen.

We started giving David Fish Oil. We thought, it can't hurt and may help since there are those in the autism community who report "improvements" in their child.
David can't swallow capsules, so we are using a liquid suppliment with lemon- what would fish be without lemon, right?

I have been paying close attention to see if anything, just anything at all is different about David with the use of fish oil. I have noticed that his BMs ( so sorry, TMI) are more solid and less watery. He is babbling more and has more approximations of words. I mention the bowel thing because that is an issue with David. I mentioned this to his pediatrician during his check up and my thoughts about that. Long story short, we received a referal to a gastrointerologist and a nutritionist. Two more doctors. Oh Boy! During a trip to the grocery store, David did manipulate the groceries on the conveyor belt and pretended to scan them like the cashier. That has NEVER happened before, usually he is the screamer in lane 5. One the way into the doctor's office this evening, he noticed a car engine starting and wanted to investigate where the sound came from. I will write about fish oil again, if there is something to report. If anyone has experience with using Fish Oil, please share.

We lost a loved one on Valentine's Day. My husband's Uncle. He was such a warm, sweet man. The last time I saw him was at my sister-in-law's wedding just six weeks ago. He was dancing with the love of his life and being his usual cheery self. His last words to me were to keep doing what I'm doing and everything will be fine. Thank you for that, Uncle. We will miss you.

The Kirton Family

2008-02-06T21:16:00.000-05:00

The Kirton Family lives in Utah. They are a family with six children on the spectrum. You read that correctly. Six Children.

I feel like I need to send vibes- prayers- mojo- something to Mr. and Mrs. Kirton. Something. Dayum.

I saw their interview that aired on Good Morning America on the internet. The funny thing is, I don't know why I came upon their interview. I was looking at some gossip site and listening to American Idol.

Many things about the interview touched me. The fact that there are six siblings with autism is unique for sure. A great case study for reserchers. What really moved me was that Mrs. Kirton experienced an emotional breakdown and lost her children for a time.

Oh, Mrs. Kirton. There but for the grace of God...

I live with my own struggles. I also feel isolated. No, I don't feel isolated, I am isolated. I am isolated and lonely, and anxious, and depressed. I have everything I need in preparation for the emotional meltdown. Everything. Mrs. Kirton has everything too, multiplied by six.

ABC News has a website that aired the interview and there is a text version as well where readers can leave comments. Some of the comments are cruel. Unbelievably so.

It took bravery to put themselves out there for the whole world to know. More bravery than it takes to leave a nasty anonymous internet comment.

I thank the Kirton family for sharing their lives with us. If they should read this, know that you have a friend in New Jersey who would be happy to lend an ear and a cyber hug anytime.

The Giants Won The Super Bowl!!!!!

2008-02-03T22:43:00.000-05:00

And my son signed his first sentence. What a great day!

I was feeding him a piece of crusty italian bread with a bit of chicken breast hidden in it. He placed his hand on his chest, pointed to the bread, signed "eat" and "more"

That was his very first sentence.

I am so proud of David. The Giants didn't do to badly either.

Autism and Divorce

2008-02-02T16:21:00.000-05:00

The topic of my internet radio show of January 18, 2008 was about the family dynamic and the divorce rate in the autism community.

Autismlink announced today that they have started an online support group for families. The link is here: http://health.groups.yahoo.com/group/Autism_Divorce/join

In June of last year, the American Autism Association held a conference announcing that they were launching a national program to combat the divorce rates in the autism community. In our community, the divorce rate is in the 80% range. 80 percent! In the general population, the divorce rate for a first marriage is 41% and 60% for a second marriage. I applaud Autismlink for giving families this resource.

What Happens?

2008-01-30T11:05:00.001-05:00

What happens if I can't care for my son?

I had an experience Sunday that shook me up a bit.

I had excruciating pain in my lower right quadrant. Excruciating in that it woke me from a deep sleep at 3:30am. Excruciating in that I couldn't stand, breathe, or move without screaming. I couldn't change my son's diaper without tears welling up in my eyes.

Ten hours in the emergency room gave me a diagnosis. Two days of excruciating pain had me thinking. What the heck would happen to my son if I weren't able to care for him?

I did what I had to do during my ordeal. I cared for him. I dosed up with Advil to take the edge off, but I carried on. I have a prescription for much much better pain relief, but I can't take the good stuff and do what I have to do.

What would happen if I suddenly became incapacitated?

I don't have a plan in place. I need a plan. A PLAN. Plans A-Z with sub-plans 1-10.

Our Trip To Disneyworld...

2008-01-26T20:03:00.000-05:00

...aka, The Laundromat.

I should have known, I should have been thinking. A laundromat contains two of David's favorite things. Things that spin and things with doors.

My son was in hog heaven! He was just beside himself with glee. He was at Disneyworld.

He couldn't contain himself and what child can at Disneyworld. I should have known, I REALLY should have known.

At first his non-stop motion was fine. There were only two other patrons doing their laundry. Within 20 minutes, Disneyworld was filling up with other patrons wanting to enjoy the amusements, I mean washers.

It wasn't safe to let David roam around watching the spinning of the amusements, I mean machines and other patrons wanted to enjoy them. So I took David by the hand and let him lead me around and around Disneyworld. As more patrons entered, I thought it better to place David in the baskets. They do have wheels after all and they make a great ride.

I wheeled that boy all over Disneyworld. Around and around over and over. And then it started. Comments from the peanut gallery.

You know how that goes:
" If he were my kid I'd tear that bottom up"
- THANK GOODNESS HE'S NOT YOUR KID

" Hmph, I wouldn't let my kid lead me around like that'"
- It's good exercise for both of us

The laundromat was full of catty women today. They should have let it become Disneyworld and they would have had a blast, like David did.

'Twas The Night of The 90 Minute Crying Jag...

2008-01-22T22:09:00.000-05:00

...and we all survived.

David woke up from his afterschool nap crying, wanting to be held. My daughter and granddaughter were visiting. My husband came home, grabbed his wallet and left to get a haircut before the jag started and it was over by the time he returned.

It's hard letting your kid cry it out. It's hard when they are three and they should be able to listen to reason, heck at three they should be able to awaken from a nap and just chill until dinnertime.

Sigh...

David doesn't go ballistic often, thank goodness because I don't know if I can handle that, seriously. The 90 minute non stop screaming was bad enough. I had to cook dinner, tacos made with frozen ground turkey that I forgot to defrost beforehand. Oh well, stuff happens.

I also had to go to the basement and figure out how to dis-assemble the washing machine. I think a belt needs to be replaced. I hope a belt needs to be replaced. I can do that once I find the belt. It's dark there and I don't see too well. I'll try again in with tomorrow's light.

I was finally able to console David. Dinner cooked. Granddaughter fed. At least she wasn't crying. My daughter tried to console David during the jag, but he's still upset with his sister for having "that thing". Yummy tacos were enjoyed by all. Even David ate half a taco for the very first time. Good for him.

David's First Sick Day

2008-01-18T08:45:00.000-05:00

When you have a child in pre-school, it's bound to happen.

The school nurse called me yesterday afternoon to tell me that David had a low-grade fever. Because of that, he wouldn't be permitted to attend school today.

He has a cold. Nothing serious. Just the sniffles that half his class has right now.

We were still in bed when the schoolbus driver honked her horn to pick up the rider across the street. David heard the horn and went to the window. He moved the window blind so he could see.

He tried to get me out of bed so we could go to the bus. Poor guy. I had to tell him that he couldn't go to school today.

He was so upset. He's better now. Cherrios and Elmo saved the day!

I'm glad he likes school. He seems very happy. His teacher sent me an e-mail this morning to see how he was doing. The timestamp said 3:29am. I hope that was incorrect. You need your sleep woman!

I Have Brass Ovaries!

2008-01-15T13:16:00.000-05:00

Yesterday, I called in to a radio show airing on Blogtalkradio. It was one of those shows that offered psychic readings. What the heck, I thought, it could be fun.

The reader asked me what I wanted to know. I told her to surprise me, She said she would give me her impressions as they came to her.

The first thing she said: I HAVE BRASS OVARIES!

Well, how about that. I didn't know I had brass ovaries. After I thought about it, I guess I do.

She explained what she meant by that statement. I am a woman who gets things done. I may procastenate, but when I want something, nothing stands in my way. I can mult-task and do all of my tasks well.

That is so true.

Take today for example. I got up. I got my son off to school with help from Daddy. I washed two loads of laundry, folded and put away four loads. I went to the store for produce for my chicken stock. I cut a chicken in half so one half could make the stock for homemade chicken soup which is on the stove right now and seasoned the other half for roasting. Prepared my resume and faxed it to a prospective employer. I spoke with my co-grandmother. I cleaned my kitchen, livingroom and two bathrooms. I made the bed. I think I ate, but I don't remember. I checked my e-mails and returned some.

You get the idea.

Does this day sound unusual?

I bet it doesn't.

So, Cheers to all of my sister-moms with brass ovaries!

Todays' Public Service Announcement

2008-01-11T16:06:00.000-05:00

I know life is hectic. Everyone is in a hurry, but could you do me one teensy tiny favor?

Don't honk at the school bus!

My son has been riding the school bus all week. Everyday, some idiot honks their car horn at the bus. Not just a little tap, a loud nasty HONK!

When I took my son off the bus a few minutes ago, a man in a red car, I think it was an Oldsmobile, was honking his horn very obnoxiously. My son was asleep, so I unstrapped him while the bus aid tended to another rider who lives across the street. When I stepped off the bus, holding my sleeping son, the driver honked at me. I yelled at him to stop honking his horn. He flipped me off. I flipped back. He flipped me a good one, but he didn't realize that the bus moves only a few feet to drop off my neighbor, so he was stuck, right in front of me, so I got the last flip.

What is wrong with people? It's a school bus and a short yellow bus at that. This isn't isolated, this has happened everyday.

Sigh, it's just another thing in life that I just don't understand.