By David Kaufer
Last Thursday, for the first time in my life, I attended a support group. Organized by the Seattle Children’s Autism Center, the support group was for parents of children with autism.
The center started the group a year or two ago and initially held meetings on the last Thursday evening of each month. Knowing that child care is an issue/challenge for most parents in the evenings, the Center provides child care for those who bring their kids – but for obvious reasons, have to limit the number of people who attend.
There were about 12 of us in the noontime meeting and I was one of only two men in the group. The facilitator gave us a quick intro and guidelines for discussion – basically we were free to talk about whatever we wanted but needed to make sure we didn’t take too much time (to make sure everyone had a turn) and also to not give advice unless it’s requested. She then left as she had another meeting to attend and told us to proceed on our own. We all looked at each other for a bit and then I volunteered to kick things off.
I told the group about Stone and when he was diagnosed. I also talked about the various therapies we have him in and our attempts to monitor his diet. I also shared a bit about Ty (Stone’s brother) and how well he’s doing academically – and the interesting challenge it presents Renee and I as parents in raising twin boys who are so different.
I really didn’t expect to get emotional during the meeting but when I began talking about how consuming autism can be and how much time I spend researching it, investigating new potential treatments, schooling options, health care issues, etc. and what a weight it was on my shoulders, I got choked up and teary-eyed. In some ways it was really the first time I spilled all of these feelings out verbally.
I’m fortunate in that I have great friends and family who are incredibly supportive in so many ways, but I think it’s just different when you’re among those who truly understand exactly what you’re feeling (or have felt). Someone handed me the tissue box and simply said, “That’s why we’re here.” I wrapped up my piece (I was already worried I talked too much) and let the group conversation move to the woman next to me.
Her story was heartbreaking. She has a 3 1/2 year old son on the spectrum who is now non-verbal. She shared, though, that he had previously been verbal – even to the point of speaking full sentences – before experiencing regression. She spoke about how much anger she felt and how she didn’t know how to manage it. We all nodded our heads and understood. She talked about how she found herself angry at friends who had “normal” young children and angry at friends who were having babies and were completely confident their child would develop and progress without problems. She talked about how she felt guilty at times because she even felt anger toward her son sometimes – even though she knew there is nothing he’s done wrong. She was still very early in this journey – only six months – so it’s understandable how and why her emotions were so raw. But my heart went out to her. It has been hard enough for Renee and me to simply know and remember what it was like when Stone was the first of the twins to start babbling and how we were convinced he would be the first to talk – and now we’re happy when he simply says “help me” or “ice cream.”
As we went around the room, I was struck by the emotion that was shared by all parents. There was obviously lots of support, but there was also a lot of frustration, concern and sheer exhaustion. Some of the women were single parents trying to raise not only an autistic child, but also one or two other children. Interestingly, there were many other cases where there were two children and while one was on the spectrum, the other was exceptional and in the gifted education program (at least three other families).
Most of the mothers had children who were older – so they talked about challenges they were facing with schools, teachers and puberty. If you think dealing with teenagers in general is tough, try to deal with one on the spectrum who is now trying to cope with the rush of hormones and all that goes into that phase of life. It certainly doesn’t sound fun.
Another common theme that emerged was how out of control we all felt when dealing with autism. To a person, everyone commented about how — when they learned the diagnosis — they dove into response mode and tried to create plans that would help ensure their child would catch up and be “normal” at some point. But in almost every case, expectations had to change along the way.
One woman said she just wanted her son to be functional enough at age 18 that he could find a job such as a cook and live independently. Another said her son is very low functioning so she knows he’ll probably have to end up in some sort of group care down the road but she had very mixed feelings about that. She said she felt she was too young (40) to commit the rest of her life as a caretaker for him, but she felt guilty for even thinking that way. It was powerful stuff and again, something we all could relate to at least on some level.
The last person to speak was the only other man in the room. I think we all assumed he was another father of an autistic child but he explained he was at the group because he has a very close friend who has a 9-year-old son with autism and he simply wanted to understand the situation better. He said he had tried to get his friend to attend support groups such as this, but she couldn’t really cope with it so he decided to do it on his own. He said that through this support group and other activities, he’s learned a ton about autism and its helped him forge a relationship with the boy that he didn’t have before. It was very touching and we all commended him for being such a good friend.
Now that I’ve experienced the support group, I’ll definitely attend again in the future (as long as my schedule allows). It provides a very valuable service and really helped put our situation with Stone into perspective in so many ways.
David Kaufer is a fun-loving Super Dad of 5-year-old twin sons, an insane Oregon Ducks fanatic (follow him on Twitter @DavidKaufer), advocate for green/sustainability and autism issues, and connoisseur of Northwest microbrews. He and his wife Renee moved to Edmonds in 2005 to raise their family (and enjoy the gorgeous views).