Respond to this post in 5 sentences or more. I have an 11 year old son and he amazes me in so many ways: When he was born he could not breath and they are unsure as to why. They placed in a a breathing machine and made sure light was not on him – all of the terms they used to explain the issues truly were beyond me. When we were able to take him home there were always issues and they were odd: Crying at strange times and for reasson we could not figure out. Then one day we realized he was hungry but did not express this to us – we went in for test and sure enough his brain does not let him know when he is hungry: if aloud he would go hungry and pass out from it. There are times he is at a friends house and when we pick him up he is a little pale and we know he has not eaten, run play, burn energy but don’t eat.
So there is 1 issue: Then one night we are eating dinner and he is maybe 3 or 4: I realized he only ate on the right side of his plate: Almost exaclty like a half circle, As I watched I found this odd and I spun the plate around and sure he enough he ate the other half. As he grew we noticed certain things – no cross body functions, swimming and running it was way obvious. If we ask him to sweep the floor it will get done but the dirt will never move across the middle section of his body and the broom will never pass mid section. Throwing a ball – nope. More and more test we realized his cross body functions were never developed and there is not a reason to why. Mentally he has it, no problem on that end of things. He could read Hardy Boys novels by the time he was 5, when he was 8 the doctor suggested we challenge him mentally to see where he was.
I took a college class a the local JC and he went with me. I only took the Algebra class to see if he could maintain it and once the teacher did a few problems on the board he had it down. He hates math as he says its boring: He easily did my algebra homework.
When I told the doctors of this they had him tested and discovered mentally his brain has developed in a way of a adult and not a child. Someone he knows things and we are unsure how. He never saw a MRI machine Before and when we walked in for a test he asked “is this to xray your head?”
Mentally this causes issues in school as he challenges the teachers on certain issues as he knows he is right. Physically is where he comes up very short – at age 8 we finally were able to remove the training wheels off his bike and still he is not a good rider. He will never be able to perform sports and of course he wants to be a baseball player. We practice but truthfully it is not there – not even close. He has large sensory issues And this adds to the amount of frustrations and work. Its hard and not allot of people out there acknowledge sensory as a disability but I’am here to tell you that it is very real.
Clothes has be certain type – he sleeps with a weighted blanket we need to comb him before bed. Every night, and I mean every night he wakes at 3 AM and needs to change the pillow case as he says it bothers him. We tried to have spare pillow there but that simply does not work so we leave a bunch of fresh pillow cases on the night stand next to the bed. He has a lamp he uses next to the bed and his night stand must be about 2 feet from the wall as the way he reaches is not comfortable. His socks must be to tight: So finally we found socks that are tight but will slowly stretch while he wears them, no tags on the shirts and he will only wear sweat pants. At weddings he will wear Kakis as long as they are very lose –
Im fascinated that he wakes to change the pillow case: It bothers him so much that it effects his brain while he sleeps and it wakes him – so now lets assume any of the above (which is just a drop in the bucket) is altered or changed – the entire day will be bad. He will have a break down and it is like talking a jumped off the edge of a building. It helps A great deal to know his ins and outs. And this is what I can tell you about sensory
1) Remain very patient as it will be tested in every way – ways you cant possibly imagine
2) Use the Internet to order everything when someone has sensory as it is way easier to return things when they are wrong
3) Never let anyone second guess yourself when your kid has sensory – you know them best
I worry about his for his future: We try and lead him in a way where he will be able to survive on his own one day. We are not close to this but it has shown improvement. In the end he is my son and I love him more then life itself and I will do what needs to be to guarantee his future will be comfortable for him.
And if he needs to live with us forever then that is fine: There are benefits, he pays the bills, balances the check book and wants to educate him self – the latest interest in case you were wondering is the GDP and national debt.
At age 11 he likes to read CNN and was explaining to me how Hillary cost herself the election by not distancing herself from the Benghazi issues. Each day its something new and the test keep coming and as it appears mentally he is still growing , so is his sensory issues: the latest is showers as he does not like the way the water hits him – I just ordered 7 different shower heads to see if any will help. Bath is a No go and he doesn’t feel “good about that” there are always options, always adjustments and over time we will find one that fits eventually.