Friday, December 6, 2013

Advocacy Series: Being the common thread

I was recently reading "A Parent's Guide to Asperger's Syndrome and High-Functioning Autism" by Sally Ozonoff, Geraldine Dawson, and James McPartland when I came across this paragraph (emphasis is mine).

"You will become an expert in your child's abilities and disabilities, making decisions about which of the treatments to try, and educating teachers, service providers, and others about your child. You will become your child's best advocate. In some ways, this is less than ideal, as you are likely already experiencing a tremendous amount of stress while parenting your special child and supporting and raising a family. But there are no teachers, therapists, or agencies that can be available to your child 24 hours a day, 7 days a week, for the rest of his or her life. You are the consistent thread from one classroom to another, from one intervention to another, from one therapist to another, who manages all the details, remembers all the important facts, and knows what worked and what didn't. You will be heavily involved in teaching your child how to behave and respond in everyday situations when therapists or teachers are not present. You are a critical ingredient in your child's life."

My son with Aspergers is only 5 so I know I still have a long way to go down the path of advocating for him. Even before his official diagnosis, I found myself explaining his "quirks" to administrators and therapists and how he learns and copes in different situations. Luckily, so far everyone has been responsive and listens to me as I advocate for him.

As difficult a choice as it was, he started public kindergarten this year. The first few weeks were tough, and I met with his teacher and school therapist quite often. One day I asked his teacher if it was okay for me to give her a list of things he liked to talk about or found comforting. I told her when he gets caught in what I refer to as a loop, where he is obsessively focusing on a certain event seeing numbers, counting backwards sometimes helps.

She was thrilled to know this as well as a short list of other insights I felt could help her better handle him. She told me that she is with him 8 hours a day now and is learning ways to work with him and help him. However, if she doesn't have to start from scratch it will help everyone progress faster. I realized then how lucky he is to have such a great teacher.

Now that he is in elementary school, the school and teachers will pass along knowledge of my son from year to year. This is helpful, but I will still be the consistent thread advocating for him. As the teachers discover things that work for my son, or difficulties he encounters, I have to take note. If he starts a new private therapy, I will be the one informing the school of possible changes.

Advocating for your child is a lot of responsibility and can feel daunting. It is important to also remember that I am not the only one wanting him to succeed. Teachers, therapists, doctors, family and friends will all be there to help. Some will be available for long periods of time; some for the 9 month school year. However, I will be the consistent thread and critical ingredient for my son, as you will be for your child.

Rachel H's son finds numbers as a soothing, predictable subject. His sister, however, thinks math is a bunch of black magic and voodoo.

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