Being a parent of child with Autism is no easy feat!

From the time you get the diagnosis of Autism you find yourself on a rollercoaster ride.

You feel shock, dismay and disbelief even if you suspected that something was different about your child. Then there’s anger and so many questions. Blame. Hurt. And fear. Most of all fear.

Take a moment as we share with you the top ten thoughts and fears most parents who have a child on the Autism Spectrum.

1. Why me? There are no proven causes of autism. Knowing that doesn’t stop all the self-doubt and blame – did I eat too much fish, did I not take my vitamins properly? What did I do wrong then?
2. Would I ever be able to leave the house again? For many parents with children on the spectrum, tantrums and rigid schedules are a reality. To do a simple errand to the grocery store, for example, becomes so stressful as you’re not sure how your child will react or how the public will look at you.
3. Where oh where would the money come from? Everything we read tells us our children need behavior therapy, occupational therapy, speech therapy, and the list goes on. But these therapies can run up to J$400,000 a month or US$50,000 a year. It’s like paying for a Harvard Education- every year.
4. Am I doing enough? Even if I win the lottery and could afford all the therapies the experts say he needs, will he be able to test off the spectrum? The books tell me to talk as much as possible to him, to interact with him, to structure his day as much as possible. But will it ever be enough? Will he ever look at me and say, “I love you, mom?”
5. Sleep – what I would do to have a good night’s sleep! Most of our children on the spectrum don’t sleep like ‘typical’ children. While other moms are talking about their children sleeping through the night at one, a lot of us moms have our 12 year olds, for example, up for MANY hours, EVERY night. They seem to need minimal sleep to function, though as a mom, I’m not sure how I can survive on two-hours sleep every night.
6. Will my marriage survive? Statistics show 80 percent of marriages with children on the autism spectrum end in divorce. While my marriage may have been strong before, now that autism is involved, I barely have time for me. Where will I find the time and emotion to offer my partner? How can I possibly raise a child with so many special needs on my own?
7. What does the future hold? For many parents this question looms ominously. The dreams of future presidents, star ball players or prima ballerinas are now replaced with would my child get in to primary school, much less high school? Will he graduate? Will my child be able to work? If yes doing what? Marriage? Should grandchildren be ruled out altogether?
8. What would happen to my child when I am gone? A very real concern that for most of us is that no matter what we might do, our children may never be truly independent. And if that is the case, who will take care of them when we are gone? Who would be willing to take on such a heavy burden?
9. Could I possibly feel more alone? Once we get the dreaded diagnosis, it’s so hard for our friends to understand what we’re going through. As parents, we can’t help feeling so alone. If you don’t have a child on the spectrum, you can’t possible understand what we are going through. And it’s even harder to be around ‘typical’ children as it only highlights what our own children are NOT doing.
10. Honestly you are my family you should know better! If we should get support from anywhere, it should be our families. However, the constant comments about how we could be better parents, or discussions about what we did and didn’t do, only harm. They don’t help.

contributed by a JASA parent.

As seen in the Daily Gleaner Autism Awareness feature

April 14, 2011