Of all the things for a 3-yr-old to get addicted to.
C doesn't really watch TV much. He likes Dragon Tales and Between the Lions and gets to watch them once or twice a week. Other than that, he could care less - that is, until American Idol comes on.
I'm sure it's not entirely healthy, but he is practically hypnotized by that show. I can't even say that it's because he loves music so much, since so little of what's on that show qualifies as music! Nevertheless, once it starts, he stakes a claim on his favorite rocking chair and doesn't budge until it's over.
I'm really going to regret letting him watch it when he starts to script Simon.
Wednesday, February 4, 2009
Tuesday, February 3, 2009
Riding the Therapy-go-round
There's nothing like a little autism diagnosis to set your schedule on its ear.
For three years, C and I had no schedule, no obligations. We ate, slept, played, and occasionally cleaned the house. We took Kindermusik classes, played at the park, and watched Sesame Street.
Then came autism.
Overnight, our freewheeling schedule became a set, rigid routine going from preschool to therapy and back again. C now goes to 3 days of half-day preschool/wk, two private speech sessions, one OT, and one PT. He also gets ST and OT at school. We do theraputic listening at home, and he takes supplements 3x/day. And to his very great credit, C has adjusted to all this better than I have.
And we actually have a very mild schedule, as autism goes. I know families who have their 3-yr-olds in 30-40 hours of behavioral therapy/wk plus speech, OT, PT, etc. C, thank goodness, learns fast and doesn't have any serious behavior problems, so behavioral therapy isn't on the radar for now. That's especially good financial news, since insurance doesn't cover it, and even a basic program would run us over $30,000/yr. Needless to say, we don't have that kind of money! So, in addition to his formal therapies, V (my husband) and I do a lot of one-on-one with C at home. We're working right now on some Floortime style activities and some RDI style communicating. Basically, I guess you could say we're cobbling together our own therapy based on what C responds to best.
It's funny, because one of the common traits of kids on the spectrum is a problem dealing with changes - the desperate need for everything to remain the same. This has not proven true with C. He thrives on new challenges and rolls with the punches beautifully.
Strange as it sounds, I need to work on being as flexible as my autistic son!
For three years, C and I had no schedule, no obligations. We ate, slept, played, and occasionally cleaned the house. We took Kindermusik classes, played at the park, and watched Sesame Street.
Then came autism.
Overnight, our freewheeling schedule became a set, rigid routine going from preschool to therapy and back again. C now goes to 3 days of half-day preschool/wk, two private speech sessions, one OT, and one PT. He also gets ST and OT at school. We do theraputic listening at home, and he takes supplements 3x/day. And to his very great credit, C has adjusted to all this better than I have.
And we actually have a very mild schedule, as autism goes. I know families who have their 3-yr-olds in 30-40 hours of behavioral therapy/wk plus speech, OT, PT, etc. C, thank goodness, learns fast and doesn't have any serious behavior problems, so behavioral therapy isn't on the radar for now. That's especially good financial news, since insurance doesn't cover it, and even a basic program would run us over $30,000/yr. Needless to say, we don't have that kind of money! So, in addition to his formal therapies, V (my husband) and I do a lot of one-on-one with C at home. We're working right now on some Floortime style activities and some RDI style communicating. Basically, I guess you could say we're cobbling together our own therapy based on what C responds to best.
It's funny, because one of the common traits of kids on the spectrum is a problem dealing with changes - the desperate need for everything to remain the same. This has not proven true with C. He thrives on new challenges and rolls with the punches beautifully.
Strange as it sounds, I need to work on being as flexible as my autistic son!
Tuesday, January 20, 2009
Biomedical to the rescue!
So, freshly armed with the knowledge that our son was autistic and that we would get no help from insurance, early intervention, or the schools (for a while, anyway), my husband and I naturally panicked. Then, we researched.
The first thing that jumped to mind was the DAN acronym I'd heard Jenny McCarthy talking about at some point. I googled that and found a whole world of treatments I never dreamed existed. These crazy people were suggesting that my son was sick - not just autistic, but physically ill, and that treating the illness could treat the autism. My first reaction was yeah, right, NEXT! But something about it rang true enough for us to try it. We had months to go before the schools or any psychologists were going to be available, so changing C's diet was something we could do immediately, on our own.
And thank God we did! The first step in what's referred to as the GFCF diet is to take away milk and anything else containing casein, the protein in milk. We did that, and within two weeks, C had receptive language again. Within another two weeks, he was also gluten-free and starting to interact with us again. It wasn't an easy diet to start him on, and five months later we're still fine-tuning, but it gave us our little boy back!
Our next big wow was finally finding an omega 3 supplement C would take. Coromega actually dissolves in juice, so he drinks it right down and never even notices it. Three days after he started on it, his teachers and speech therapist all commented that he was like a different child. He was more focused and able to follow directions. He even started playing a little with another child at school.
We've had another big wow this past month with nystatin. Eliminating yeast overgrowth in my little guy's gut is going to be a long, hard road, but just getting some of it out has been huge. C's language has taken a huge leap forward from three and four word phrases to eight words and beyond; he's talking more in general, and it just seems like less effort for him.
So hell yeah, this stuff works, and C is on the road to recovery!
The first thing that jumped to mind was the DAN acronym I'd heard Jenny McCarthy talking about at some point. I googled that and found a whole world of treatments I never dreamed existed. These crazy people were suggesting that my son was sick - not just autistic, but physically ill, and that treating the illness could treat the autism. My first reaction was yeah, right, NEXT! But something about it rang true enough for us to try it. We had months to go before the schools or any psychologists were going to be available, so changing C's diet was something we could do immediately, on our own.
And thank God we did! The first step in what's referred to as the GFCF diet is to take away milk and anything else containing casein, the protein in milk. We did that, and within two weeks, C had receptive language again. Within another two weeks, he was also gluten-free and starting to interact with us again. It wasn't an easy diet to start him on, and five months later we're still fine-tuning, but it gave us our little boy back!
Our next big wow was finally finding an omega 3 supplement C would take. Coromega actually dissolves in juice, so he drinks it right down and never even notices it. Three days after he started on it, his teachers and speech therapist all commented that he was like a different child. He was more focused and able to follow directions. He even started playing a little with another child at school.
We've had another big wow this past month with nystatin. Eliminating yeast overgrowth in my little guy's gut is going to be a long, hard road, but just getting some of it out has been huge. C's language has taken a huge leap forward from three and four word phrases to eight words and beyond; he's talking more in general, and it just seems like less effort for him.
So hell yeah, this stuff works, and C is on the road to recovery!
Sunday, January 18, 2009
The Rocky Road to a Diagnosis
C, my three year old, was a perfectly normal, happy baby. He hit every milestone on time, some early, and besides having trouble sleeping, didn't show any warning signs of anything, much less autism. The sleep thing could have been partially my fault since I'm not one for schedules, but it was probably the one early warning sign that we had.
So, after at least 18 months of perfectly normal development, he stopped pointing. It didn't jump out at me at the time, but a few months after his second birthday, I knew he wasn't talking as much as he should. However, he was so normal in every other regard that even the pediatrician just said that sometimes boys talk later and not to worry (I learned later just how useless she was). Nearing C's third birthday, it became clear that what we thought was just a stubborn phase was actually an almost complete loss of receptive language. He never lost expressive, but its development slowed to a crawl. He spent most of his time running in circles, flapping his hands, and babbling. C no longer wanted to be read or sung to, which were two of his favorite things just a couple of months prior. He couldn't even tolerate his Kindermusik classes, which he'd also loved. Something profound had happened, and I found the name for it late one night watching videos of autistic children on YouTube. I never knew what it felt like to have your blood run cold until that night.
So began the search for a diagnosis. It would take another five months before anyone said the term PDD-NOS to us, but in the meantime we learned (on his third birthday, no less) that his receptive language tested at the level of a 14 month old, and his expressive was that of a 19 month old. He also had a mild fine motor delay and sensory integration disorder.
Why five months for a diagnosis? Well, C was too old for Early Intervention, the schools were out for the summer (this was late June), and every reputable psychologist in the area had a waiting list that was months long. So, we pretty much gave up sleep in favor of research. The label that was finally given to C is a relatively meaningless one and is a huge source of frustration. It just means Pervasive Developmental Disorder - Not Otherwise Specified. In other words, he's on the autism spectrum, but none of the current labels really fit, so we're just going to stick him with this one and see how it goes.
So, after at least 18 months of perfectly normal development, he stopped pointing. It didn't jump out at me at the time, but a few months after his second birthday, I knew he wasn't talking as much as he should. However, he was so normal in every other regard that even the pediatrician just said that sometimes boys talk later and not to worry (I learned later just how useless she was). Nearing C's third birthday, it became clear that what we thought was just a stubborn phase was actually an almost complete loss of receptive language. He never lost expressive, but its development slowed to a crawl. He spent most of his time running in circles, flapping his hands, and babbling. C no longer wanted to be read or sung to, which were two of his favorite things just a couple of months prior. He couldn't even tolerate his Kindermusik classes, which he'd also loved. Something profound had happened, and I found the name for it late one night watching videos of autistic children on YouTube. I never knew what it felt like to have your blood run cold until that night.
So began the search for a diagnosis. It would take another five months before anyone said the term PDD-NOS to us, but in the meantime we learned (on his third birthday, no less) that his receptive language tested at the level of a 14 month old, and his expressive was that of a 19 month old. He also had a mild fine motor delay and sensory integration disorder.
Why five months for a diagnosis? Well, C was too old for Early Intervention, the schools were out for the summer (this was late June), and every reputable psychologist in the area had a waiting list that was months long. So, we pretty much gave up sleep in favor of research. The label that was finally given to C is a relatively meaningless one and is a huge source of frustration. It just means Pervasive Developmental Disorder - Not Otherwise Specified. In other words, he's on the autism spectrum, but none of the current labels really fit, so we're just going to stick him with this one and see how it goes.
Thursday, January 15, 2009
Starting Out
I read recently, perhaps from another blog, that raising a child with special needs is no different than raising a regular child. They need all the same things, they just need more of it. Those of us with special needs children will have more sleepless nights, change more diapers, and clean up more messes. We'll have more meetings at school, appointments with doctors, and struggle to make time for our spouses and ourselves. In short, it's just like raising a typical child - intensified.
Welcome to life on the autism spectrum.
Welcome to life on the autism spectrum.
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