Tonight was the monthly Southern Oregon Autism Support Group meeting that I facilitate. We had a low turn-out, probably due to illness, but it was one of the best meetings we’ve ever had. For one thing, two new members attended, so that was great. For another thing, they were the only two members who attended. And as much as I love when we have a big turn-out, when only three people are present, you can really talk.
Since one of them was new to the area and the other one was new to the diagnosis, we started off by talking about local resources. It’s a short list for our area, unfortunately, but I think I gave them a few good leads. We moved on to listing various topics of discussion that we can focus on for future meetings, topics that would be most helpful to everyone (since our group consists of parents of preschoolers to adults). I want this support group to be as beneficial as possible. And that led me to mention one of the topics that I’d like to feature at a future meeting – the emotional issues we face as ASD parents. Usually that area is relegated to the professionals. But what if you can’t afford a therapist or don’t have the time to see one regularly? And if the therapist doesn’t have a child on the spectrum, how are you going to feel that total support and understanding that you feel when you’re talking with other ASD parents?
One of the new members, a mother of a 24-year-old son with Asperger’s, opened up and talked about how hard it is receiving the wedding invitations and college graduation announcements of her friends’ children. How difficult it is when your child doesn’t meet the typical milestones. And I knew – oh, how I knew the emotions she described. It’s not that our children have disappointed us – it’s not that at all. It’s that we wish things didn’t have to be so hard for them, and for us. It’s that we fear the future. For some of us, it starts with the not-pointing-at-things-to-show-them-to-us. Then there’s the not-talking. For others, it’s the not-potty-training or not-making-eye-contact. Or all of the above. And plenty more.
But then, while talking, we realized that our kids have different milestones, and that’s okay. Because whether or not they ever meet those typical milestones, we celebrate the ones they do meet. Like, in Neil’s case, not shrieking in a public restroom – that was huge for me. Being mainstreamed in a regular classroom (with full-time one-on-one aides, but still – huge). Going to the grocery store without distress – anywhere, really. Those are some of my milestones. And only those close to us and other ASD parents can really get how huge those milestones are.
Take for example, when I was at work yesterday. The boys were home because of Veterans Day, but Neil needed to go to his school for wrestling practice (participation in a team sport – huge!) for two hours. Since he’s been successful with riding his bike to and from school every day, I took a major leap of faith and thought that he could handle riding there and then home afterward. I told him he had to call me as soon as he got home to let me know. We calculated that he would be home by 10:30 and would call as soon as he put his bike away. Adam would be home to let him in.
So I’m at work and 10:30 rolls around. Of course, I’ve been anxious pretty much the whole morning. But the phone rings right on time (big!), and it’s him. However, from the background noise, I can tell that he’s not at home. Semi-panic, or pre-panic, sets in. “Where are you?” I ask. He tells me that he’s still at the school, that he was mistaken about the time practice started, which was an hour later than he’d thought, so he wouldn’t be home for another hour. So, even though his instructions had been to call me when he got home, he realized that he should call me at 10:30 anyway to let me know that the situation had changed. He didn’t say that, but that’s what happened. And I about fell out of my chair in shock.
I thanked him for being so responsible. I could barely get the words out. Dumbstruck, I turned to my co-worker to try to share the moment with her. Of course, she didn’t get it at all. What’s the big deal about a 15-year-old doing that? I tried to turn it into a teachable moment by describing my son’s challenges and how autism affects him. Not a flicker of understanding.
But tonight at the meeting? Complete empathy. They totally got why that was huge without me explaining it. I felt validated. I felt understood. I didn’t feel alone. And that, my friends, is the whole reason for a support group.
We have different milestones for our kids, but we do have them. And it’s so affirming to know people who understand those milestones, and celebrate them with us. My co-worker has known me for five years and didn’t understand. Those two women had known me for one hour, and they were celebrating with me. Best. Meeting. Ever. And that’s a milestone too.
Image credit: Stephanie Hofschlaeger
I don’t really remember having a hero when I was growing up. Some kids idolize actors, musicians, and athletes. Some kids cite firefighters or other rescue personnel as heroes. Sometimes teachers, even parents. Religious and political figures. And then there are those who have fictional characters as their heroes – movie, book, or cartoon characters and superheroes (I admit, I did have a bizarre crush on Aquaman for a while).
As adults, we often develop different heroes (fortunately, for some of us). Our friends and spouses, for example. Our siblings. For many, parents still head the list. Those of us who are special needs parents often list the teachers and therapists who work with our children as our heroes, not to mention our children themselves, with all that they go through. And then we – parents – have each other. We inspire, listen, support, encourage, and make suggestions. We reach out, share, learn, and hope. We identify with each other. We are each others’ heroes.
And now I have a new hero to add to the list – the ever-growing list of fellow autism parents I have become fortunate enough to know, either online or in person, or both. I want everyone else to know about him too, because I think he’s phenomenal. I’ll call him Bert. Bert attends the support group that I facilitate. He’s 84 years old and has a son with Asperger’s. Eighty-four! His son is 58, and Bert drives him to work and cares for him. (He recently applied with a local organization that handles adult DD services to get some support systems in place.) Bert reads anything about autism that he can get his hands on, takes notes, and comes to the meetings to tell all of us about what he read. He tells jokes, encourages us to lean on each other (like AA people, he says), and patiently listens to those of us with much younger kids. He reminds us that even though our kids are all different and at different ages, we share many similar experiences. He wears a cute straw hat and plaid shirts and I just want to give him a big hug. All of us inspire each other, but that man, that gentle, devoted, amazing man, is my new hero (sorry, Aquaman).
Bert, I want to be like you when I grow up.