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.
Wednesday, October 28, 2009
Tuesday, October 13, 2009
Um, Yeah.
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.
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.
Friday, September 11, 2009
This and That
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.
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.
Wednesday, August 19, 2009
Bumper Stickers and Du Du Stew
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.
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.
Wednesday, August 5, 2009
I'm a Working Girl!
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.
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.
Thursday, July 30, 2009
David Never Ceases To Amaze Me
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.
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.
Tuesday, July 21, 2009
All The Kids Want To Do It
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.
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.
Subscribe to:
Posts (Atom)
