Hello.. I was blessed with the oppritunity to give my step-son, age 10, a chance at life.. he has many disabilities and is so misunderstood.. I have been with him only 3 years and the drs have no faith in him as well as his special school.. I have been working with him between his dredful surgeries.. Mind you never being around a child with special needs before.. so i am coming in clueless... I was told he could not hear, see, never be able to walk, talk and so much more negative thinking.. All because he can not verbalize.. But i saw so much potential in him.. So now we are at the point where he will repeat something after like 30 x's asking him.. but its a good start.. I bugged and bugged his school about getting him started in a walker.. he had been in a stander since the age of 4.. so when they got donated one it was such a blessing that we were able to get it.. still being skeptical about it, his physical therepist said we can always use it as a stnder... ya sure.. so this school year after the first month of asking them to put him in it there.. finally his personal nurse got his pt to put him in.. as he took off she was about floored.. Okay now that you have got an idea.. anybody have any suggestions on how to get him to verbalize a lilttle better..he can lip the word but hard for him to get the sound out... Also his hand cordination needs worked on so bad... any ideas on that...
ONE MORE REALLY BIG THING.. HIS BRAIN SCANS HAVE ACTUAL BLANK GAPS IN THE WAVES.. I NOTICE THAT HE DOES THIS JERK WHERE HIS EYES GET ALL BIG LIKE HE IS WAKING UP STARTLED BUT HAS BEEN AWAKE AND ONLY WHEN WE ARE DOING WORK.. WHAT DO THESE GAPS MEAN.. IN THE SCAN HE SEEMED TO BE LAYING THERE NORMALLY WITH EYES OPEN...
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Are the gaps from seizures? Does he see a neurologist? It's wonderful you are giving him a chance at life. I'm sure he knows from hugs what it feels to be loved too :) .
Melissa.
That the thing.. his neurologist said she has seen them since birth.. but when we go to the er the drs scatter around as if they had never seen it before.. we have his seizures down to one every few months opposed to 20-40 a day.. which is amazing.. but still has these gaps.. she had told me he would never walk or talk.. she has left and now we travel 2 1/2hr for all of his appointments now.. but they are not telling me anything but to get him the vna but that is so dangerous.. i looked it up and has worked on very few and caused problems in so many....
What is vna? I looked it up and found visiting nurse services. Is that what you are talking about? where is the danger? Where is his mom? Is she no longer in the picture? I believe you are in a difficult position, but I think you are great for taking on such a large responsibility. I am sure that your son and your husband appreciate what you are doing. Please keep us updated. I wish I could help. bobbie
Hi, my name is Dawn and I have a special needs daughter myself. She has C.P. also and she has ADHD, along with diabeties. I am blessed that she is not wheel chair bound at this time. She is now 17 yrs old but I was told this when she was 2 1/2 yrs old. It was hard she was a toe walker and didn't walk alone until she was 36 months old. So I give you alot of credit for all the things you are doing. We do have a great school system here in Wisconsin-Franklin that has all the classes and the staff is so great. My daughter will graduate in June, but with the CD program we have they can stay in school until they are 21 yrs old. They learn at their level. Amanda is only at a 3-5th grade level. But that is fine we just have to work more harder on learning things. I'd like to chat with you if you'd like. My e-mail address is justwatchjustmeagain@yahoo.com Yeah I know it is a strange one, I'll tell you about it later. Take one day at a time like I do, God is also helping us as we go.
Take care and be greatful that child is in your life, I sure do.
Dawnlkingan
Its a vns sorry put vna.. But it is like a shock treatment.. they insert these shockwaves through his brain.. there are quite a few children in his school with him.. like his neuro went all vns happy on all her patients.. and alot of parents thought it was not a good choice.. so of course we know not to get it.. but still have no clue what these gaps mean...
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