There are moments in this autism journey that make us question the path we have pursued for our child. As that child grows and matures and becomes more expressive, more self-aware and shows signs of self-advocacy, we have more input than ever to guide our decision-making.
Only all the extra input doesn’t necessarily make the decisions easier. In fact, the opposite is true. If anything, with all this new info to go on, the decisions are more difficult than ever.
When decisions were made largely without Ryan’s input, we had the luxury of operating somewhat in a vacuüm. Rightly or wrongly, we gathered with the team, made the choices we thought best, and hoped for the best results. Now that Ryan is able to give us more feedback, we are finding occasions to question ourselves are more frequent.
Don’t get me wrong — it is quite obviously a wonderful sign that Ryan is developing all these communications skills and a greater awareness of the world around him and how he fits in it, particularly from a social aspect. I’m just making the point that all these new data points confuse a lot of the issues.
For instance, Ryan is doing well in school. He is in a mainstream setting, as he has been since the start of elementary school. He is in the most academically challenging setting he’s been in for years, as he no longer attends any resource classes. He maintains an aide, as he has since kindergarten. The work is challenging, and he doesn’t always succeed. But he’s invested in his outcome, and willing to do the work to achieve high marks. We view the aide as essential to keep him organized. Without her, we fear he would lose track of assignments and priorities.
Socially, it remains a struggle. That’s not new — Ryan has always had a hard time connecting with his peers, whether because of his own rigid interests or more recently a lack of common interests with his classmates. As best we can tell, and we’re reasonably certain he would tell us, he is not being picked on, but he just hasn’t connected.
Well, that’s one way to put it. Another is the way Ryan explains it, a far more blunt assessment.
“I have no friends.”
Those words are painful for any parent to hear. In our case, they confirm what we have observed and add a layer of fear about isolationism and depression. We are very happy that Ryan cares, but in many ways it was easier before he was able to tell us. We could rationalize that his lack of friends wasn’t a problem for him, it was only a problem for us.
He’s also expressed that he hates having an aide. In his words, it makes him feel “like a baby.” This is tricky. We are very worried about his ability to keep track of all his academic demands without the support the aide provides. But we have always viewed the presence of an aide as a balancing act and something that would need constant re-evaluation. It’s one thing to have an aide facilitating playground games at recess among second graders. It’s quite another to have an aide in a middle-school setting.
Veronica has already reached out to the team. Are there ways the aide could pull back a bit while still providing the support we continue to believe is necessary? She has also reached out about Ryan’s feelings about a lack of friends, mostly to see if they have any ideas.
Ryan has shown a willingness to be more flexible with his schedule, but he already has hockey and a social skills group occupying two nights a week, and sometimes stays after school for extra help on other days. We’d love to see him involved in an after-school activity or club that might provide social opportunities with like-minded students, but are wary of the anxiety that can result from being over-committed.
Moments like these leave us questioning everything. Are we doing the right thing? Are we trying too hard to force a “normal” school experience on him? Would he be better served in a different school environment? Is the presence of an aide causing more harm than good?
So many questions. So few answers.
It’s at times like these that I have to stop and remind myself that these issues are in many ways the byproducts of Ryan’s social development. And that development has carried him a long way. I think of recent experiences that are also a result of that development and I am lifted.
But then I think of my child wondering why no one will sit with him on the bus to a field trip and I am heartbroken, and scared about the emotional toll such episodes may be taking.
Mostly I just want to wrap him in my arms and shut the world out, keeping him safe in our little cocoon. That’s not realistic, of course, but it is the first instinct.
Last Friday I took Ryan to a college hockey doubleheader. Veronica suggested we invite the one boy who has enjoyed being around Ryan the last few years. I resisted, protesting that I wasn’t sure if six-plus hours together was the best idea. Was it the right thing to do? Maybe not. Selfishly, I knew we could enjoy that time together without any worry if it were just me and him, and so that’s what we did. Should I have made more of an effort to turn it into a social opportunity? Maybe.
We know that as much as we want to, we can’t always be Ryan’s parents and his friends. But for an afternoon? Or a weekend? I’m not giving that up. Those too are moments on this autism journey, and they also come with questions. Am I an adequate stand-in for the friends my son doesn’t have? Can I fill that void in his life? And by doing so, am I doing more harm than good?