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Family Mentally and Emotionally Exhausted From Autism--Asks for Help

by Pat on Dec 19, 2008 at 7:05 PM Filed in Stories from Readers

I am the mother of a nine year-old boy. Gavin was born a premature twin with a sister with anencephaly. We knew from the day Gavin was born that there was something different about him; we just didn't know what it was. At the age of 2, Gavin was not walking or talking. He only did, what I call, an army crawl, crawling backwards and in circles. I kept telling the doctors there was something wrong, but they wouldn't listen to me. They would brush it off saying "It is only delayed development due to being born premature."

A few days after Gavin's third birthday, he walked and said his first sentence at the same time. It was "Mommy watch!" I was never so happy in my life. It wasn't until a new doctor was brought into Gavin's doctors office that I finally started getting answers. The doctor wanted Gavin to be evaluated at UAB Childrens Hospital. Gavin was given a list of symptoms but NO diagnosis.

When Gavin was five, he started school in a public school system and was put in a regular classroom. We had IEP meetings to see what kind of help was available for him. He had 1 hour a day with a special education teacher until he started 4th grade. At that time we had another meeting in which they told me the most ridiculous thing I had ever heard: "Gavin's IQ is low but, he is not handicapped enough for special education." They told me that since Gavin has no diagnosis they do not know how to teach him.

Gavin will fail this year. I have no doubts about that. All he does in the classroom is cry because he does not understand the work and the teachers are unwilling to help him. I am currently taking Gavin to a new doctor in Birmingham who thinks Gavin may have Aspergers Syndrome. He is in the process of evaluating Gavin now. I have three other children who are having problems coping with Gavin's disability. It is putting a terrible strain on our family's lives. We desprately need to be able to find the right help that Gavin needs for the whole family's mental stability. If anyone can help me, I am asking that you reply to this story. I am mentally and emotionally exhausted. I need help.

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12/19/2008 8:59:32 PM

Hi. God Bless you and your family! I don't know how the law works in your state but where we live if you request an evaluation to be done by the school district by a team and/or the school psychologist they have to comply w/i 30 days. Also, I have gotten tremendous help from our local Community Mental Health office with doctor's appointments, referrals, respite (which is wonderful - I find that even and hour to do what I WANT to do recharges me)

Does your school have an Autism Impairment consultant?

We too did not get much help early on and I utilized a website www.do2learn.com and printed off pictures and developed visual schedules and picture books for when things got intense. Also, one of my favorite books is The Out of Sync Child. It talks about and explains Sensory integration Therapy, which can all be done at home at very little cost.

I hope this helps.

Heather

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