My Special, Wonderful Boy!

Self-Portrait 2009

Our Jack is a special, wonderful  boy. But he has some issues that have forced us to go to bat for him on more than one occasion. He's super smart, but super sensitive. His brain works a little differently than some kids. As you read this, you may recognize some things you've noticed about people you know or about yourself. We all have things that can make life challenging.


When Jack was a baby, we noticed he was very sensitive to sudden or loud noises. He didn't like too much commotion and would get overwhelmed and "fussy." Some people told us we needed to "acclimate" him to noise, that he would get used to it if we just exposed him to more chaos. He also showed no interest in solid food. Zero. Nada. Zip. When the other mommies at Gymboree were bragging about their toddlers eating scrambled eggs and bacon or enjoying their first bite of steak, I was hoping we wouldn't have to pack bottles and formula when we sent him off to college. One time in a crowded restaurant, I gave him a little taste of mashed potatoes and gravy (what kid doesn't love mashed potatoes and gravy?). He gagged and threw up, right there in the restaurant. Sorry, other diners!


Finally when he was 8 1/2, behavioral problems at school caused us to ask some serious questions of his pediatrician. We were referred to a Child/Adolescent Psychiatrist, and he was diagnosed with ADHD, PDD-NOS (Pervasive Developmental Disorder-Non-Specific--it's on the autism spectrum) and SPD (Sensory Processing Disorder). Rather than being upset that there was something "wrong" with our child, we were actually relieved to know what was going on with him and that we would finally be able to get the help he needed to deal with his challenges. I felt validated because I always knew he was different--not wrong, just different. He now takes medication and sees a therapist once a month, and he's doing great!


He's an extremely bright and happy little boy. He's a talented artist. He loves video games, especially Mario and Sonic. He loves playing on the computer. He has his own YouTube channel and several followers. He just finished programming his second computer game (created it himself, spending hours a day at the computer--boy can concentrate when he's interested). He has oversensitivity to some things (especially foods), very low tolerance for frustration, social awkwardness and difficulty making transitions (tough time with changes in his routine or switching from one activity to another).


This is probably why he has such a tough time getting along with the neighborhood kids. They love to tease him and torment him, and he doesn't take it well. As he is taller than most of them, he'll lose his temper when he gets frustrated, so he is seen as the "bully." A couple of years ago the kids in the neighborhood formed a club. Jack was not allowed to join the club and the main rule of the club was that you couldn't play with Jack. Nice, huh?


Luckily he has a very understanding support system at school and within his Sunday school environment. We recently had a meeting at school with the principal, his teacher and the school psychologist to discuss adaptations to the program which will help him be more successful at school. He really has a tough time with anything competitive (that low tolerance for frustration thing makes losing hard), so we've had to set up special accommodations for him in PE. He's very smart and does well at what he's interested in (he's fast becoming far more knowledgeable about the computer and programming than me!), but has trouble with the abstract stuff like "study for the test." If you put a worksheet in front of him, he'll finish it in no time, but what is "study"? It's not concrete enough for him (I had that problem myself).


It's really given us the opportunity to be more compassionate of other people, cause you never know what their struggles are. Just recently Jack was talking about a classmate of his (who also has some challenges) who wants to talk about Star Wars all day (his obsession) rather than do his work. He gets that that's the way ----'s brain works, and he's not just trying to be annoying. He's already learned that people can be different without being "weird."


We've always kind of known that there were things about Jack that were different than other kids. He's very sensitive (cries easily), has absolutely no interest in sports (something of a disappointment for his dad) and has difficulty picking up on the social cues the rest of us don't even think about. It's been a learning process for all of us. I'd never heard of PDD before he was diagnosed, but now I'm learning more and more about it all the time. 


It actually took me about a year before I even realized that PDD = Autism! Nobody had really said the "A" word to me, so I just went around telling people he had "developmental issues." Finally one day in the course of my research, a light bulb went on over my head. "Oh, duh! Autism! Okay then."


The more I read, the more I realize that a LOT of people have the same issues. I think there have been kids with undiagnosed issues forever! Those were the kids who everyone thought were the "troublemakers" in school. The ones who just didn't get it and had trouble fitting in, who maybe turned to drugs and alcohol to try to feel "normal." Thank goodness we know so much more everyday about the brain, even though so much is still a mystery. It really does teach you that everyone has their battles.


The more I read and learn (check out the Recommended Reading List on my web page for a list of some of the great books we've read in the past couple of years), the more we're able to help our boy. I've also discovered a whole community out there of people like me, who are just trying to make sense of it all and to make the world a better place for some of our most vulnerable citizens. Awareness is growing. I was thrilled that my son's charter school held staff training at the beginning of the summer on dealing with children with ASD. Yay! Maybe they'll finally be able to see him as a developmental issue, rather than a behavioral one. Maybe they'll stop punishing him for acting out when he's stressed, overwhelmed or overstimulated. But that's a story for another day . . .


There's nothing "wrong" with Jack, he's different. In the words of Temple Grandin, "Different, not less." He is, however, perfect in his own way. We're learning to live on the spectrum!