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Friday, April 23, 2010

Mary's story

I have three children with Autism.

Timothy is 13 and has Aspergers.

Timothy loves
Maths and computers. At the moment he is also enjoying photography and everything pokemon.

Timothy was diagnosed when he was 4yrs old. Timothy really struggles with social situations. He will not answer our door or our telephone without prompting. Even if he knows and loves the person on the phone he refuses to chat.

Timothy has really come out of his shell with the new friends he has made at Camp Autism. I think because most of these kids also have Autism and understand his need to sometimes to walk away or ask questions.

Amy is 5 and has classic Autism.

Amy loves everything Tinkerbell. Amy also loves animals.

Amy has only just started talking in the last 2 years. Amy also is lactose intolerant and has Epilepsy. We have not been successful in toilet training with her and it is an ongoing concern as Amy started Prep this year and whilst she has no been bullied yet I wonder how accepting kids will be as they get older.

Kailyn is 3 and has High Functioning Autism and was diagnosed a week before her 3rd birthday.

Kailyn is extremely bright and can write her name and other family members' and has been reciting the alphabet and numbers from age 2.

Kailyn does not understand other children her own age. She gets very frustrated when they act like typical children and not do puzzles, write names and colour between the lines.

Though with Kailyn we had started seeing the signs at a very early age we chose to put our heads in the sand. Three children on the spectrum brought me to tears often with worry of how we would cope, find services etc. Kailyn has also been diagnosed with Epilepsy and Encopresis. Kailyn is partially toilet trained but due to the encopresis and the need for medication to make her use her bowels it is a daily struggle.

I think the biggest struggle for me personally as a parent is trying to find services and activities for my children. Government funding ends when they are 6 and I often wonder and then what? Timothy is already homeschooled because the education system was failing him. I wonder what next. I wonder about where it will take our family and what the journey ahead will be like. We currently live in a small town in North Queensland and I feel we are being forced to move to a capital city to sit on waiting lists with thousands of other families. The need is so great in Australia that there is not enough services to go around.

The most special moments for me in the past few years have been at Camp Autism. It is so nice to chat with other parents who understand the journey we are on. Its nice to see brothers and sisters of kids on the spectrum hanging out and comparing poo stories or laughing at the silly things kids do. But it breaks my heart to hear of the tears the bullying and ridicule these kids suffer at the hands not only of school yard friends but often of their own family members. Hearing that a smack would cure their brother or sister is not what these kids need to hear.

At times like this journey of raising kids with Autism we should be able to find support in our own family. Sadly this is not always the case. For me Camp Autism has gifted not only myself but my husband and children with a new family. A family of adults and kids who know what the word acceptance means, are always there with a shoulder to cry on , and a joke to make us laugh again. People often thank me for the work I do for Camp Autism, what they don’t realise is how much the camps and the families who attend give back to me. At these camps I am free to be myself and my kids can spin, flap, jump, wriggle, giggle and meltdown without fear of being called horrible names.

Tell your story
and help build Autism Awareness


Anonymous,  April 23, 2010 at 8:40 PM  

your story is a beautiful one...god bless you and your little angels.oxoxooxo

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