Thanks,

What makes my son disabled in my opinion is the fact that he has a life-threatening disorder that he will have for the rest of his life and he will require medical care and medication. Michael’s SWCAH has caused set backs for him as he is getting older. He had to do the first grade twice, not due to developmental skills, but due to the fact that for two years he spent more time out of school than in due to illnesses. I feel that these children should be eligible for extra assistance had CAH will be with them all of their lives and can cause problems in different areas of their life such as employment. Michael is like all little boys that are eight years old excepts he is ill more often and had to take special precautions for his health and life. I am not saying that all kids with CAH must get SSI, but we are all different and live in different circumstances. We had to remove Michael from public schools for long periods of times due to all the flu and contagious illnesses that were in our area. This required a tutor for him and he fell behind anyway, this caused emotional and self-esteem issues as he compared himself with others in his grade. He is also in counseling because he if afraid of dying. I know that some of this will be better as he gets older and understands it all a bit better, but for now this is how it is. I am a single mom and I don’t have the benefits of staying at home with him all the time when I finish college. I have to wonder what kind of employment he will find and will they understand when he is absent from work more often than some. Please remember all kids with CAH are unique and special. I have read many post on here and there are lot’s of kids that don’t have any complications from CAH both developmentally or socially or medically. This is just my own personal experience.

 

Best Wishes,

Terrie