Sometimes having a kiddo with special needs has no perks. I do have to say close parking and door to door bus service can really rock. But what doesn't rock is that people don't expect much even if we as parents do.
"Normal" parents don't worry about IEP's, hitting milestones and the social aspect for kids that have extra needs. It generally comes easily and naturally as they grow and progress and get older. Kids that have delays are lacking something. They seem to advance in one area and fall behind or stay the same in others.
This year Tyler has done exceptionally well and he has exceeded his goals for MOST of the year. Apparently after our Christmas break he regressed in his gross motor skills. He stopped doing a few things that he was doing and even has gone as far as to not use one of his arms.
What makes me mad? We had parent teacher conferences a few weeks ago. NO ONE SAID ANYTHING. Christmas was MONTHS ago. I have NOT noticed anything. I am so mad that no one told me until today.
Apparently with his regressing in that one area he would qualify for summer school. While normally I would be totally stoked for it there is a catch. He can't attend for the other activities because he is only showing issues in one area. But what really gets me is that I asked to met with them in a week from Wednesday *( I have an appointment for Grayson that day) they have waited so long to tell me about it that they are coming up on the papers needing to be submitted.
My HUGE problem is that even though has made amazing progress he is going to be six. He is going to be in kindergarten this year. He can't write. It isn't possible with his hands the way they are. But he is suppose to be doing "regular" school? He doesn't talk like a 6 year old ( though today he told me he was sassy!) but he isn't going to get speech because he advanced this year.
How is he suppose to be in a Typical classroom with out the extra help when he isn't "really" up to par? I have accepted that he might not ever be "Typical" ( Please do not think that I don't push him or that I am degrading him in ANY WAY!) He can and will do EVERYTHING. It just is on Ty time. But give him the chance.
If he has to go for summer school and not be able to go to the other stuff, then I want to know what they are going to do to get him up to standard. I feel like he will just be blown off because he has disabilities. This isn't a chronically ill child that GETS better. Not as he gets bigger he will get better and stronger.. This is HIS life. This is how it will always be. There is no magic transplant, therapy, pill, long regime of drugs to fix this. His disability will always be there and will always be something that they look at and say " He is crippled, he is blind, he has brain damage" YES we know he has all those things. But he has a WILL to do it.
So in momma bear fashion we will be back at Shriners next week for some evaluations, starts of therapy and just MAYBE get in to have surgery that was due in October. We have another appointment with the Eye guy and with his physiatrist because we don't know where to go next.
I feel like I failed my son.
PS if anyone needs rides up to the city in the next 3 weeks we are going EVERY single day :(