I spend a great deal of time looking for progress in Jack, my son with autism. My family, his teachers and his therapists work incredibly hard to help him learn how to work around the deficits that come with his autism. Because we, as parents, live with tiny, incremental changes every day, it’s hard to see how far our children come over a course of months.
I was reminded of this last week, when Jack’s speech-language pathologist showed me some testing scores and explained how they related to the same test that she’d given him two years ago. He has made incredible improvements in his expressive and receptive language, which got me thinking about what else he’s done over the past 12 months.
I started 2010 fretting about homework. Jack’s first grade homework was destroying us. He would go to school for six hours, then we would spend one or two hours fighting over homework. Jack didn’t have any time to relax, process his day or just be a kid and play. I felt as if all we did was fight over spelling words and math worksheets.
Shortly after I wrote about our homework troubles, Jack’s team and I worked out a compromise, where they would give him his due-at-the-end-of-the-week reading packets on Fridays instead of Mondays, giving him the weekend to be a kid and get some of his heavy work done.
Now, at the end of 2010, this homework policy is codified in his IEP, the document that outlines Jack’s services and accommodations. The truly wonderful thing is that taking the daily pressure off of him seems to have helped Jack see his homework in a more positive light. He still has homework each night, but he tends to power through and get it done with a minimum of anguish.
One of the most upsetting realizations I had earlier this year came in February, when I realized that 7-year-old Jack didn’t know the names of any of the children in his class—kids he’d known for a year and a half. Discovering that Jack was completely socially isolated in his class, spurred me (and his school team) into motion, creating goals for him and working on helping him interact with his peers.
I saw this work come to fruition earlier this month when I was volunteering in his classroom. His teacher reports that the kids sitting at Jack’s table have turned into a nice little unit, with Jack regularly interacting with them. I saw one of them say hi to Jack, to have him turn to her, start to say simply, “Hi,” and then turn back to say, “Hi, Kelly.”
The fact that he knows her name and cared/was aware enough to know he should use it is a huge leap for him. I’m so proud to see him start to make it.
There are so many challenges that face children who are disabled, but not visibly disabled. My family and I face this reality every time we leave the house. Unfortunately, this challenge is not one that Jack can overcome; rather society has to become aware that children and adults behaving outside the norm are not necessarily misbehaving, but might have a legitimate reason for acting the way they do.
I began the year by grappling with this very issue at a new year’s trip to a children’s library. March brought this issue to the forefront of the autism blogging community when an anonymous child’s behavior in a library led to a rant about her autistic-like behavior by a blogger unfamiliar with autism.
My family and I still struggle with this. I see looks from strangers when Jack acts oddly. Occasionally we will run into someone who gets it, such as one such woman in a building lobby a few weeks ago. Jack hopped up and down in front of her using his bare hand as a puppet and waving it in her face. I watched her face register understanding just before she reset and began to engage him, very much on his level. That five-minute conversation made my day. I hope to run into more people like her in 2011 and beyond.
With all of the focus on therapies and interventions, so much of being an autistic child seems like work. I always have my eyes open for activities that will be fun for Jack, but that don’t involve him sitting in a room by himself building Lego creations.
We have tried a variety of activities with Jack, many of which haven’t worked out. In June, we gave baseball a shot, but it turns out that Jack doesn’t like baseball. Three months later, however, Jack joined the Montgomery Cheetahs, a special needs hockey team, and we found out that hockey is his sport.
Jack’s weekly practices and occasional games with the Cheetahs has been one of the high points of 2010 for us. His pride in his new identity as a hockey player is incredible. As he gets more comfortable on skates and becomes more aware that he is part of a team, I look forward to Jack’s increased self-confidence and physical abilities in 2011.
Every parent of a child with autism that I know worries about school. We worry about the teachers, the other children, how our kids learn, bullying, our own children’s behavior and whether the school system will provide the services our children so badly need.
Jack and I have been incredibly lucky with a wonderful team at his school. Still, the beginning of 2010 was a bit of a struggle for Jack. I regularly received phone calls from the school about Jack’s behavior and my heart always sank a little bit when my phone rang during school hours.
Even after success at summer school, I worried about sending Jack back to school this fall. I knew that second grade was much more difficult than first and I was concerned that his problem behaviors from last year would reappear.
Due to his teacher, who really seems to get him, Jack’s age and increasing self-awareness, plus a great deal of work accommodating his sensory needs, Jack has performed beyond our expectations at school. He still has his off days (and weeks), but he’s found a good spot at school and he is happy, which is more important to me than anything else.
At the beginning of December, I wrote a hopeful post on my personal blog about how things are currently going for Jack. That post sums up so much of the way I feel about the past year. We started 2010 taking steps forward, but also falling back an awful lot. While we still take steps backward, we are taking more and more that propel Jack forward.
When I look forward to 2011, I think of all the progress that Jack has made this year. It hasn’t been easy, and I know that there are many struggles in front of us, but I can’t wait to see what Jack has in store for me on our journey for this coming year.
I wish you and yours a wonderful new year. May 2011 be full of progress, hope and love for all of you.