When your child is born, MOST people don’t expect any serious complications or any disabilities. I say most because some people get testing done while they are pregnant that tells them their child will be born with a disability and are able to prepare for their child’s arrival. Which I think is awesome. But MOST of us expect a happy, healthy baby with 10 fingers and 10 toes.
According to the March of Dimes about 8 million children are born each year in the world with “birth defects.” These are the more severe disabilities that are sometimes genetic, sometimes because of prematurity or poor diet and sometimes just happen. These are the ones you can see right away.
Then there are people who have a happy healthy child. Who see small differences in them, but the children make all the “milestones” – sometimes even early. Whose child is smart and funny and talented and energetic. Whose child sometimes have a hard time with certain things, but who figure the child is just special or different in their own way. Then the child goes to preschool, and it is suggested they be tested for special education.
My son is one of those children.
Turns out he has a few “developmental disabilities.” He has Sensory Processing Disorder. This means that the way his senses send signals to his brain sometimes get mixed up. Things are too loud, too bright, too rough, too touchy, too smelly, too …. too much. He has a slight speech impediment with tongue thrust and struggles with a few sounds. My son also processes language differently. We haven’t figured out exactly what is going on there yet. He aces all the language tests. His vocabulary is at grade 3 even though he is only in preschool. He just doesn’t always understand what you are saying. Even if you say it in toddler terms. Even if you break it down a word at a time. Even if you say it differently several ways. It just doesn’t “compute.” These have both led to some behavior problems in the classroom we rarely saw at home or with friends, which is why the doctors didn’t catch it, even though we were in all the time. He also has low muscle tone and eating issues – which stem from the sensory processing. We are working on these issues with therapies and activities like Karate and swimming.
He is extremely intelligent. They don’t do IQ tests at this age, but his knowledge base and vocabulary, etc. all test at grades much higher than he is age wise.
So, what happens when you are hit upside the head with special ed testing – thinking all your child’s life he is intelligent, funny, bright and all around awesome?
Well – you cry. You look stuff up online. You try to explain to your husband about what they are saying.
That one has been hard. He doesn’t see anything wrong with a fist fight on the playground – that’s what they did in Russia. He doesn’t understand why they think he needs special help. “Do they want him to be a robot?” he asks over and over. Why do they think he is such a problem he wonders? To him it’s just a boy thing, maybe he is a little bit over energetic – a little pushy or opinionated. Nothing bad. He only sees the best parts of our son. Which I am thankful for. He can be a mirror of the best parts, and I can help him work on the things we need to work on.
I dig through everything I can find about our new “problems” and what will help. I make bins full of uncooked beans and rice and fill them with mini dinos to dig through and find. I order sensory diet paraphernalia. I get more putty and some stuff to turn baths to goo and I get wiggly jiggly toys and a big hopper ball and make things like “cloud dough” and make my son play in the sink before school and make him hop 100 times on the hopper and squish him between couch cushions, making a “Kiddo sandwich” and find “hippotherapy” or horse therapy (which HAS helped) and buy a twizzler which he can spin on for hours and …..
And you do everything you can to help your son.
You do find some answers. For example, why he never slept well, and what might help with that. You find out “special ed” really isn’t all that bad… not yet anyway. He is still in the regular classroom. Even when his speech pathologist works with him she does games and things like that with other class members so he isn’t singled out. He gets to ride the bus (only to school, not home, because I want to see how his day was) to help foster independence. Which, at age 4/5 is AWESOME!!! He gets some help from the OT, although not nearly enough.
You learn from other special ed parents (some with really severe physical and mental disabilities) that you will have to fight the system. That school therapy most likely won’t be enough (which you already see) and that you will have to do private therapies, and likely pay for most of it, if you want you child to really get what they NEED. The public schools are set up to help your child “function” through the day at school. They aren’t set up to help your child THRIVE. Which is what all parents want.
You learn that “special ed” isn’t so special. It isn’t something to be ashamed of or something to hide from. I don’t mind telling others about our experiences. I hope I can help some people out there. If we had started sensory diet therapy at a younger age it might have helped him earlier in school.
You learn you are lucky. Your son will grow up, live on his own, take care of himself, he will adapt as he grows up to these things – and likely by the time he hits middle school will just blend in. We have a family at our horse therapy who have two severely disabled girls. The fact that they walk on their own and are able to eat lunch and go to recess and PE with their “regular ed” classrooms is huge. They will never live on their own and will need therapies all their lives and nursing help as they get older. We are lucky. This is doable. Although to that mom, her situation is doable too. It’s all relative.
So, when someone tells you that their child is in special ed, don’t say you are sorry or that it must be hard, or stumble over your words. Ask if they want to tell you why they are in special ed. If they want to talk about it, talk. No one’s kid is perfect – we all have struggles. I have found acting like nothing is “different” or “wrong” is worse.
And try to support the families in special ed in your kid’s school. I’ll bet those kids have just as much to offer as your kid does. Maybe more. Talk to them at events, encourage your children to be friends with their children. Don’t push your children away from the girl in the wheelchair that can’t talk. Maybe she needs a friend too. Have them say hi. Ask the parent if they can hold hands. Do what you can to bring some light into their lives.
Posted by akochkon