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Autism Spectrum Disorders Health Center

This Exit, No Return

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A Reader’s Theatre, By Joy Cowdery continued...

Susan: Having a child with special needs means that she isn’t just your child. More than most parents we have to be involved with professionals from day one. First it is the medical profession and then the education system. Having so many “experts” telling you so many things that can contradict one another is exhausting. Honestly, sometimes as parents we just go with the person who seems to care the most and trust them.

Karen: Even professionals don’t know everything. I feel like I am going for an interview every time I go to an appointment. Even with endless list of symptoms and questions, I can end up with no answers. I’ve learned that I will not accept “I don’t know” from a doctor. I will keep getting referrals until I find someone who does. I will also never let a doctor set limitations for my child. Every child is unique in learning and developing and no one can predict the future.

Jim: Sometimes even the people you expect to understand are without a clue. One doctor told us as our son was hospitalized with horrible seizures that basically all children with syndromes are living miscarriages...my son does not have a voice and I am making it my life’s mission to know his syndrome so that I can question, comment, complain, ask, and tell for him to anyone who will listen. If they don’t, I will move on to someone who will. I am proud of my son. He is a bright child without a way to communicate that to people. He is yelling in a soundproof room. I admire his attempts to communicate and reach out to a world that sometimes doesn’t reach back.

Beth Ann: Sometimes you have to fight. School can be a battle zone. Once Craven “aged out” and became the responsibility of the public school system, we had to educate ourselves, and them. Having been involved with special education for so many years, I thought I would know the ins and outs. Well, I’m on the other side now. I’m fighting for my own kid.

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