When I am not being an autism advocate I am a full time nanny for two delightful toddler girls. They love being out and about and yesterday, a rainy gloomy day, was no exception. As going to the park was straight out, we found ourselves at the Children’s Museum. It is a delightful place for a small child to explore. There are things to climb on and bounce in, instruments to play, blocks to build, and a great water table. We stayed for hours. We were surrounded by a herd of other toddlers whose mothers were trying to get them out of the house and out of their hair. As I watched this happy band of children I thought of Boo Bear at the same age and I felt very sad. He never got to the enjoy the Children’s Museum. Before he was diagnosed, he was a very anxious child. When he was around other children in public venues he would either freeze or bolt. After his diagnosis at age 2, he was in school 4 hours a day and therapy much of the rest of the time. There was no time for play. I look back at the many therapies we tried and recollect. Some of them I am glad that we did. Some, I wish we had never touched. The prevailing wisdom at the time was that in order to improve, a child with autism needed at least 40 hours a week of intensive therapy. Who came up with this number and why did I believe them? 40 hours a week is more than many adults work and we expect this of three year olds? I am not saying all therapy is bad, but I am saying that there needs to be a happy medium. Children on the spectrum need advocates and they need early intervention. They also need time just to be kids. Period. In a sense, Boo Bear was robbed of this time, as all the specialists I talked to predicted gloom and doom for his future if we did not comply with their schedule. I wish my 47 year old self could go back to my scared 34 year old self, take her by the hand, tell her it was going to okay in the end, and just take some time to enjoy her son because he is the greatest thing since sliced bread.
I look at Boo Bear today and I marvel. He has his challenges, but he is a very happy, well adjusted kid with a wicked sense of humor. And, in the fullness of time, the universe sent him some very special PCAs. One of them, P, has been with us nearly 6 years. He has seen Boo through thick and thin, introduced him to new worlds and never once lost patience with him. I am in awe of his patience and his understated sense of humor. I would trust Boo with him to the ends of the earth. The other PCA is A. She is much younger, but brings youth and vitality to her position. Growing up with a brother on the spectrum, she never had much time to be a kid herself, as she was a built in care taker. Now, when she has Boo for the day, she thinks like a kid; what would be fun to do today? She dreams up expeditions that are perfect for a teenage boy and they go out and do them. These two individuals make Boo’s world a much more complete place and I am forever in their debt.
So, where am I going with this? Ah, yes, stolen childhoods. In a nutshell, intervention for your child on the spectrum is important, but so is honoring their childhood, for childhood is fleeting. I really don’t think anyone needs to work or do therapy for 40 hours a week. I think we need to see our children as children first and not a diagnosis. Here is my challenge to you. Look at your schedule for the week, then cancel a therapy visit or two and take your child to the park, the movies, the children’s museum, or wherever would make him/her happy. Spend time with your child. The hours and years of therapy will be a blur to your child and to you. But, you both will clearly remember the day that you cancelled all his/her appointments, played hooky, and went a flew a kite at the park. Enjoy.
Harriet's Hedgehogs and Autism Advocacy 