Once upon a time I wrote this blog. I wrote this blog under the guise of wanting to help parents of children with special needs. Most specifically sensory processing disorder, but also tic disorders, severe food allergies, environmental allergies and asthma. I also included spectrum disorders, because “They” were trying to place my child there.
I say “under the guise” because my true intent was not only to share information, but also to shake some sense into parents. I was completely blown away by the lack of advocacy I saw by other parents towards their children. I was bombarded by questions like these: “Well what if the pediatrician doesn’t think he needs to be tested?” “Well what if the school doesn’t think he needs an IEP” “My child is exhibiting this behavior but my friend says that’s normal” “Well do you really think he needs to take his epi-pens with him everywhere?” I just wanted to shake these people and yell “IF YOU WON’T STICK UP FOR YOUR KID WHO WILL??” My feeling was and has always been, no one knows a child better than his mom. If you think there is an issue, than don’t shut-up until somebody does something!
Then there was the flip-side, the parents who had the diagnosis, complete with instructions and didn’t do any of the work at home that the therapists asked them to do. Your child is SUFFERING and you hold the key! Get off of your lazy butt and help your child. My son’s therapist said he needed to do Therapeutic Listening that involved special headphones that cost $250 and he needed to listen 20 minutes 2x a day, I did it. The therapist said he needed to do heavy work, I did it. The therapist said you need to do the Wilbarger Brushing Technique at least 4 times a day, I did it. The therapist said, he really seems to be benefiting from this platform swing, I bought one. They said, wrap him, let him be in closed spaces, desensitize him by having him play in rice, or beans, have him finger paint, continue to introduce new foods. I DID IT!
I don’t want your applause, I don’t need it. I have every single ounce of congratulations I need by looking at my son now. He was diagnosed at 2 1/2, because I advocated for him. He is 7 and shows very little symptoms now. He is a success story because I did what I was told.
Then there’s the middle. The parents who are TERRIFIED by this diagnosis. They are frozen – like a deer in headlights. My purpose for them was two-fold, I wanted them to see it could be done, and that they would see results if they followed the instructions from their therapist. I also wanted to shake them and say, “It is not about you. Stop feeling sorry for yourself and get moving, the sooner you wake up and start the process, the sooner you will see results.”
So that was it. That was why I started this blog. Admittedly, I write less and less about actual SPD now, because we are not in the throws of it, the entertainment factor of a gifted child with special needs is more interesting.
The last addition to the list of issues was a Large Movement Tic Disorder. This by far was the scariest thing we have dealt with. It was so scary I barely blogged about it. I didn’t want to think about it more than I had to, BUT I did advocate for him. I was told by his pediatrician, when this appeared at 4 1/2, that tic disorders were common in boys from 6-10 so I shouldn’t worry. I said OK, but he’s 4! He said “don’t worry”. That was not an acceptable statement to me. My son had a very uncommon type of tic, one that is more commonly associated with Tourette’s, although it wasn’t Tourette’s, called dystonia. I was freaked out, so I advocated and found the right doctor, someone who would advocate for me. Although there was a 7 month waiting list to see the head of pediatric neurology, he pulled strings and got me in in 2 months. All because I would not let up. This doctor said to me “When a mom think’s there is something wrong, I always listen.” If your doctor doesn’t feel like that, get a new doctor.
He still has this tic, we now see a neurologist every 6 months. I am lucky, Isaiah loves him, they both wear bow ties. I picked the Dr’s brain, it turns out there is a short-circuit in Isaiah’s basal ganglia, the most mysterious part of the brain. You know what? I didn’t just accept that; I researched the heck out of it, and asked a million questions before accepting it. BECAUSE I AM HIS ONLY ADVOCATE. Does the tic still scare me? Yes. Do I hide from Isaiah that I’m scared? Yes. Technically should I be scared? No. The basal ganglia is the least understood part of the brain, and because of that they know very little about tics. Just enough to know it might go away, it might not, it might be worse sometimes and gone for long periods of time, then come back. They also know it won’t kill him and he doesn’t have a brain tumor. That’s enough for me.
And now to the fun.
All of these things make him who he is. I always hear: You’re such a great mom, I could never do that, I’d be worried and scared all the time, or how do you do it? You could all do it. Because all it takes is love.
When Isaiah was little we used to call him “Monk” like the TV show about the OCD detective. He exhibited signs of OCD, “they” wanted to diagnosis him with OCD. It turned out it was just a manifestation of his Sensory Processing Disorder (SPD). Anyway, like Monk used to say, “It’s a blessing……and a curse.” I think it’s more like a blessing. This kid is unique to the core. He is anything but boring, or typical. He doesn’t like anything other kids like, he has no problem carrying on conversations with adults, his vocabulary is bigger than most adults, his imagination is so extreme that I wouldn’t be surprised if he actually takes over the world. Everyone who meets him is so impressed by him that the most frequent comment I hear is “he is definitely going to be famous one day.” He has no desire to be famous. Unless it’s for taking over the world.
That’s the other thing. Life is funny now. Sometimes there’s still some hard parts. Sometimes he gets so wound up he can’t wind down, it’s infrequent, but there are still those rare moments that I have to hold him down and remind him to be still. Sometimes he doesn’t want to touch something “icky” but he will at least try. Maybe he doesn’t want to eat something slimy, but he’ll at least touch it with his tongue. And more than sometimes he is much louder than he should be. Apparently the hardest part of SPD to tackle is the Auditory part. I post about that here. But for the most part, he’s funny all day long. Not funny silly, more the funny that comes because I am incredulous that those words just came out of his mouth. Even before blogging I kept a notebook of everything he said. I had people who followed me on Facebook just to see his comments and videos. There are videos people.
I don’t know if I made my point, but I know what it was. The point is, I am more likely to post now about my amazing, funny, smart boy who now has only mild SPD that will probably be with him the rest of his life. But that’s OK. He is awesome, he was taught the coping skills he needs to get through most things that hold him up. I learned skills to help him when he get’s tied up too. So now I get to tell the funny side of life, and if your child has any of the issues that Isaiah has, or if they’re different, the reason why this blog is still a good place for you is because through it, you will see that you can have hope, that life will change, adjust, be wacky and it will all be OK. So continue to join me on this journey, and remember, this kid creating potions to destroy the world wouldn’t have gone near those potions 3 years ago, or walked in the grass, or sand. He wouldn’t have made a mud pie. He wouldn’t have eaten chicken nuggets or Annie’s gummy bunnies and most of the time he was naked, or only wearing his under-wear because his clothes bothered him so much. So take heart. This is still a blog about a boy with Sensory Processing Disorder, but it’s a boy who has learned the skills he needs to function and get through every day with a smile!