We are still waiting for the Video EEG/MRI results from 11/28. I would like to think no news is good news, but the only good news they can give me at this point would be they found a switch to stop the Epilepsy and flipping it will also reverse any damage, causing his Cognitive function to be normal. It would be great to not have to explain that my Son has a Cognitive Disorder and testing proves this originated in the Frontal Lobe of his brain. Yeah, people have a hard time comprehending that just because a child can have a conversation with you doesn't mean they do not have a disability. I guess it will forever be a problem for my Son because you think he looks and talks normal? Oh well... Believe it or not I really do not care what people think, I am just afraid that they will do more hard than good in acting like there is not a problem. After the New Year I will have to go to the Public School and figure out what services Brynn Qualifies for. His IEP is full of Therapy that would help him develop life skills and become the best he can be. I certainly cannot provide all his needs.
I got the answer from OCDD today. I initially went thinking they will say he qualifies for Special Education Programs and maybe some Therapy. I didn't expect them to say that he qualifies for services. I didn't realize how shocked I would feel to see in black and white the the State has defined my child as Developmentally Disabled. Even when you know something, think you are prepared... it just seems to hit you when you see it on paper, from the people who know what they are talking about. So me being the OCD research read everything in one day type...
http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html
"Developmental disabilities are birth defects that cause lifelong problems with how a body part or system works. They include
- Nervous system disabilities affecting how the brain, spinal cord and nervous system function. They cause mental retardation, including Down syndrome and fragile X syndrome. They also cause learning and behavioral disorders, such as autism
- Sensory-related disabilities, which can cause vision, hearing and sight problems
- Metabolic disorders such as phenylketonuria, which affect how your body processes the materials it needs to function
- Degenerative disorders such as Rett syndrome, which might only become apparent when children are older and can cause physical and mental problems
So... this is where we are... not sure where we are going but apparently we are going this way... Hopefully it will not be too late in the week before we get the Neurologist results...
Brynn after Pneumonia and too many seizures... |
Abigail to make you smile... Works for me, without fail... :) |
Hope everything turns out great for Brynn, keep up the faith... (Abigail) she's a cutie, I love that name and her smile!!! <3
ReplyDeleteThank you for your kind words... I know deep in my heart all will be okay! Sometimes our prayers are answered in different ways. I know even in Brynn our Father has a plan! ~Denise
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