[September 15, 2008]
“That boy ain’t stchupid y’know” That was my father’s comment after spending a summer babysitting my two boys. In his backhanded Guyanese way (love my daddy but being tactful is NOT his strong point) he was complimenting my oldest son.
My son was born with the Autism Spectrum Disorder, Pervasive Developmental Disorder – Not Otherwise Specified or PDD-NOS for short.
What this means for him is he freaks out around crowds and loud noises. He gets embarassed easily and has a hard time expressing himself verbally. He comes across as younger than he really is and therefore doesn’t always connect with boys his own age. And he can be a bit of a perfectionist and stickler for following the rules.
But despite his challenges he, like my father said, ain’t stchupid y’know. He has made some of the most insightful comments over the years, is world famous for his politeness, and writes the most beautiful stories. And we all know that common sense ain’t so common but he has an extra dose that puts me at ease if I need to leave them home alone for a bit or send them to the store for a loaf of bread.
It is a very frustrating condition for me as a parent to deal with. And I feel that even more so in the Caribbean-American community. Especially with the members of the older generation. It hurts to watch some folks deal with him. They don’t say much but I can see in their eyes that they are trying to figure out “what’s wrong with him”. And some just put him in the ‘slow box’ right off the bat. Or, what can be worse, some people, once they find out about his ability to mimic and perform whole swatches of television shows from memory, treat him like he’s some kind of Rain Man (remember the Tom Cruise movie?) and try to get him to do similar mental tricks.
Well, whatever his issue, he’ll have to learn to deal with the idiots around him, be it for his PDD or his wearing glasses or being the short kid in school or whatever. It just makes me feel good to know that some folks, like my father, take the time to see beyond the odd behaviors and realize that my son is just a regular kid after all.
[September 15, 2013]
Wow, I didn’t plan this but it seems I’m updating this post five years to the day I originally wrote it. Well, as you can imagine, a lot has happened in five years. The cute, super adorable kid in 2008, who loved to cuddle up at with me at night to watch movies has become a 5’5″ freshman in high school, who’d rather cuddle up with his cell phone than his old mama at night.
As for his PDD-NOS, no he hasn’t been cured. As far as I know no Autism Spectrum Disorder is curable. But, with years of educational and social services, he’s learned to work around his issues and become a happy and productive kid. Though we still deal with issues of perfectionism and over-stimulation he is now your average teenager sporting attitudes, having crushes and constantly harassing me for an Iphone.
Something interesting that has happened is that he has only recently become aware of his diagnosis. He was diagnosed so young that going for testing and being pulled out of class for sessions with his therapists was normal and I never thought to explain it. Being a nosey kid, he went through my file cabinet one day and found all of his medical and educational services paperwork. I came home from work to the question, “Mommy, what’s autism?’ I was stunned. I didn’t prepare for this. And felt stupid that I never thought to discuss it with him. But we had a great conversation and it clarified alot of things he knew about himself but didn’t quite understand. I knew all was well when I caught him using it as a line on a girl, “Y’know I have autism right? That’s why I’m so shy” (insert sweet smile here). LOL.
My hope is that our story helps another family learning to deal with an ASD. In particular, if you and your child are struggling with the NYC education system and getting the services they are mandated to provide, please click here to read my interview with the autism blog Sailing Autistic Seas. Now if you’ll excuse me, I have to come up with reason #473 of why I’m not buying him an Iphone.
Do you have or know any children on the spectrum? Do you feel supported by your family, friends and community? How to you think the Caribbean/Caribbean-American community sees/deals with ASD’s? Is your Board of Ed helpful in getting your child the services he/she needs? Tell me nuh?!
Thanks so much for sharing your story. It is a blessing to have an amazing dad like yours. Your son is blessed to have you both. May he continue to grow up to make you proud. As a mom of a son on the spectrum, your story gives me hope.
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thanks ladies. y’know it’s always gonna be something with your kids. be it a big or small issue. they may be disabled or not as cool or down and the other kids. he/she may have an interest others find strange or can’t dance. someone always gonna find a reason to call them out and they will have to learn to cope with it and move on. that’s the biggest lesson i’ve learned through this.
that along with the fact that all of those odd, funky, special, hilarious, strange, peculiar, etc things that make your child an individual are the same things you will absolutly LOVE about them. y? cuz they wouldn’t be who they are without it.
Commiserations on the frustrating aspects. I am a mother of two small ones and have experienced minor anxiety over their development. I imagine it must be difficult to live with something as complicated and permanent as pdd.
But I also imagine that you develop coping skills you never imagined you could have, plus a different kind of bond with this child who is just as precious with pdd.
The positive side sounds good to me, I want my children to be all of those things.
Best Wishes.
It’s the category of autism that they put kids in that don’t fit into the other categories. PDD kids have some but not all of the various characteristics of autism or aspergers, etc.
For my son that means developmental and social delays/issues such as speech (he understands but has trouble expressing himself, has a bit of a lisp and a high pitched ‘babyish’ voice). He’s easily frustrated. He’s a perfectionist (things must be done a certain way or he’ll redo something until it is right), he freaks out in crowds and is sensitive to loud noises. He’s very sensitive (he cries when his brother cries or hears a sad story) and is a bit awkward socially with other kids.
He’s been in various therapies since he was 2 so he’s come a long way (he has very few words and used to point / grunt to ask for things. Then cry when we couldn’t figure out what he wanted.) He used to require A LOT of attention to focus in school.
You don’t grow out of, or become cured of autisim but you can teach your child techniques to deal with it or address particular issues like speech, with therapies to help.
It can be frustrating for me at times but for the most part I see the positive aspects of PDD. It makes him an out of the box thinker, sensitive to others, very polite and well behaved. And just an overall really interesting person.
I encourage anyone concerned about their child to visit their pediatrician and question them until you get answers. You can also visit these sites for more info: http://www.autismspeaks.org/,http://childstudycenter.yale.edu/autism/pddnos.html, http://www.autism-society.org/site/PageServer,
http://autism.about.com/od/whatisautism/f/whatispddnos.htm
One of the nicest things in the world is to have your dad rooting for you in the way he knows how. Good for you.
This is the first I’m going to hear about pdd. Tell me more, there is a delay in his emotional development but not in his mental development? Will he eventually catch up with his age group?
Nuff respec
Luckily, a boy has some sphere where he can show his abilities in. Don’t pay attention to those who think they are the best and have no problems at all, they just need to have something to talk about.