Saturday, May 18, 2013

A family's quest for rhythm

As both a parent of a child with a disability and a special education teacher, I have a special insight into the lives of those with whom I work. I would not presume to know all the individual and personal challenges that a family with a child with a disability encounters, but I would say that I understand that "normal" is different for all and that living with disabilities is not an easy road for any.

I picked up Kathy and Matt Giordano's memoir, A Family's Quest for Rhythm: Living with Tourette, ADD, OCD and Challenging Behaviors, because one of my students was recently diagnosed with Tourettes and it has been over a decade since I last worked with anyone with this disability. I have visited NICHCY's site for information as well as a few others, but needed more. Their memoir showcases the life of a family dealing with a child with rages related to his disabilities. A family who made choices about dealing with such extreme outbursts they had to place their child in a psychiatric center for over a year, who had bolts on every door in their house and locked their child in his room, who worried about being able to safely transport him because he would open the car door on the expressway. Most people cannot image needing to lock a child in a bedroom. I can. My son would not sleep at night and would wander. We started with a gate, progressed to a door handle lock and finished with a bar across the outside of the door. It kept him safe and it kept his sister safe (She was his personal whipping post) and it allowed us to sleep. Thankfully by the time he was 5 and finally toilet trained, we did not need that extreme measure anymore.

I think it is painfully easy and common for teachers, therapists and service providers to blame the parents for their child's behavior. If only Mr. and Mrs. Smith would do X, their child would be so much better. This book reminds people that parents to do the best they can at any moment with what they have. No parent intentionally undermines school or their child. No parent is perfect. Similarly no school personnel is perfect. We all are doing the best we can at the time.

The stress of living with a child with a disability is unimaginable to people who have not had the experience. Oddly enough, the less obvious disabilities, like ADHD, OCD, ASD, and Tourettes can be the hardest because humans tend to be judgmental. We look at the child "acting up" and think the parent is the problem, not the child has a problem. Where a child in a wheelchair or with Downs Syndrome may elicit pity, these hidden disabilities often evoke condemnation. This lack of insight on the half of the public causes stress for families and isolates them. We need to remind ourselves that we have no idea what the child and family is dealing with and accept not criticize their effort.

This book is an easy read. It shows a mother's deep love of her child, and her quest to find a path that would lead to success for him. It was a long, painful journey told with candor about the self doubt, dead ends for a solution and personal pain she went through raising her family. I think reading books like this that tell the tale of the journey is important for service providers because it help build insight and compassion for the families with which we work.

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