One thing I have learned from being a parent of an autistic child is that we all need support. Someday I will write about Philip needing support, but today I will focus on how I need support. I have mentioned before that autism is the hardest thing I have ever dealt with. But in a strange way, autism has also blessed me in so many ways. One way I have been blessed is by the community of support I have found. It is so true that a shared load makes everything lighter.
Today I met with the ladies in my autism support group. I literally would not be writing this blog about Philip’s amazing journey (of which I am so privileged to be a part of) without them. If not for them, I might still be in the state of hopelessness I was in 2 years ago. I might never have learned of Soma. I might never have found a bridge for communication between me and Philip.
Our group formed about 2 years ago. It was during a time I was feeling very sad about Philip’s lack of progress. The feeling of hopelessness plagued me many days. I have always had wonderful friends and family support, but even they could not fully relate to my situation. I decided I needed to go to a support group. As I looked on-line, I was discouraged to find a lack of groups that I could attend. They were usually in the evening when I was occupied with my four active kids and my husband getting home from a long work day. I had met a couple of moms at Philip’s adaptive swim class whom I enjoyed talking to. I decided to start a group with them and invite the parents of Philip’s classmates at school. I printed out some flyers to be handed out in Philip’s class with my contact info and the date of our first meeting which would be at my house.
The first autism support group meeting convened in my dining room in the fall of 2011. There were 6 moms with sons or daughters about the same age from the same school. We took turns introducing ourselves and who are children were, and talked about both the hardships and joys of raising our kids. I remember commiserating with them as they talked about the difficulty of visiting at other people’s homes, receiving looks of annoyance or contempt in public when their kids misbehaved or threw a tantrum, and worrying that their kids weren’t getting the services or help they needed. I also remember agreeing with them about how their autistic child brought their family closer and how some people can surprise you with their kindness. It was a great feeling to be among people who truly understood because they walked the same path I did.
I also remember one mom, who I am now good friends with, mention she was going to Austin soon to see a woman named Soma. I didn’t think much of it at the time. I had never heard of Soma before. Besides, I thought I was past looking for new things to help my son. I was into discovering the newest treatments when Philip was 3-5 years, but nothing ever delivered as promised. Philip had been stuck in neutral for a few years now and I thought it was time to stop chasing the wind and just accept the situation as it was. I wouldn’t have called it giving up, but I was tired and no longer knew what to do. I kept the thought of this new “therapy” on the backburner.
Our support group continued to meet once a month and everyone took turns hosting. Getting together always energized me. One particular meeting stands out for reigniting my hope for positive change. We were at my friend LC’s house and she showed us a segment she recorded from the show The Doctors in which they interviewed Carly Fleischman, an autistic teen who doesn’t speak, but writes on a computer so eloquently. Then we were treated to LB’s update on her trip to Austin with her son M. She told us of how he learned grade level material like the Pilgrims and he was spelling answers on a letter stencilboard. She said her son spelled that his favorite color was bIue. When he was asked which shade of blue, he spelled, “sky.” I could hardly believe it! Then she showed us a video of M working with Soma. It was like a miracle right before my eyes!
I started to get a little more serious about looking into Soma. I ordered her book, looked at the HALO website, and even went to Michael’s craft store to buy stencils and try doing it on my own. But I didn’t really know what I was doing and it didn’t seem to work. Again I put it on the backburner. I thought, “What worked for M, probably won’t work for Philip. He can’t spell. He won’t understand grade level stuff. It’s probably too good to be true.”
Somehow after that, things about Soma kept popping up. One night I was flipping through the channels and stopped at the 700 Club (which I normally don't watch) because I heard autism come up. I ended up watching a segment on Elizabeth Bonker, a non-verbal autistic, who wrote the book I Am in Here. In an interview, her mother talked about getting her start with Soma. Then the summer of 2012 I met SC and her son MK at a bicycle camp for special needs. The whole week we chatted while our kids learned to ride a two wheeler. I learned she also went to Austin to learn RPM from Soma. Her son went to a regular middle school and wrote intelligent letters to his class to explain how autism affected him and that he thinks normal thoughts except that his mouth won’t listen to his brain to get his words out. MK typed with an aid and attended regular classes. Finally I decided it was time to take the plunge. I registered to see Soma in October.
I am not going to write about our amazing, life-altering week with Soma now, but I will stop to say many people brought us to that place: LB, SC, my Bible study and many others who prayed for us. When I look back, I cannot help but see how this was God's answer to my prayers all these years. God orchestrated all these people to enter my life to get us to where we are now. To everyone who has ever supported us or prayed for us, I cannot thank you enough!
Another wonderful thing about being in a support group is what you receive, you can also give! When I got back from Austin, I could not contain my excitement about what happened with Philip. I encouraged the rest of my friends in the group to give it a try. At one meeting, LC finally said, “If we are all planning to go to Austin, maybe it would be worth it to ask Soma to come to Buffalo.” This statement began yet another landmark moment for many families which I will have to detail in a future post about Soma’s visit to Buffalo in May.
Today’s support group meeting reflected a passing on of a wonderful blessing: the gift of communication. The group is no longer just moms of kids the same age from the same school, though it is our core. We now have new parents in the fold. Their kids range from 8-27, go to different schools, and are at varying stages of developing communication. The blessing is all encompassing. We notice our kids are happier and we as parents are happier too. I no longer feel the crushing weight of the burden I carried 2 years ago. I stand with my group, my friends. Together we have strength to share our loads and it is no longer too heavy.
The "Core Four" (with Sam and Philip) with Soma and Tito at the Buffalo Soma-RPM Conference