Questioning the Path

Ryan at the Rock
My companion for last Friday’s college doubleheader. Did I do the right thing?

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?

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9 thoughts on “Questioning the Path

  1. The way I see it, we get so little time to enjoy being together. Between school, work and all the other things life demands, plus the years fast approaching where are kids won’t be interested in hanging out with their parents… I say take whatever you can get! Ryan has the rest of his life to spend time with others. But realistically our days with our children are numbered. I know, morbid and depressing, sorry! My point is don’t regret time you spent with your boy. There’s no reason at his age you can’t be his best friend for a while!

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    1. I am becoming increasingly aware that our time together won’t last forever, and I want to drink in each experience we have. I don’t regret it, I do want to be his friend and his parent, but I also want to do the right thing. Thanks for commenting.

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  2. The friend stuff is so hard. I have done just as you have, not invited another child along on an outing because I knew it would be so much easier with just Roc, not having to intervene or manage the social stuff. I try to balance that out by scheduling some play dates (and I know that’s not a word that tweens use) though not as many as would probably be helpful. We are really working on the Roc’s ability to control his strong emotions right now, especially during games (Trouble was some BIG trouble last night!) and I feel that when he gets that under control then it will be easier to have another child over.

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  3. The one thing I know is that, as difficult as these decisions are…and as difficult as it is to know what the right choice may be: you’re attentive, you’re watching, you’re listening. This means that, as you make changes and try new plans, you’ll know whether or not something is working out, and adapt accordingly. Obviously that doesn’t make any of this any easier, but it does mean that Ryan and his feelings/thoughts are what drive these changes. Too many people just set goals, expectations and push for their child to reach them, regardless of their reactions. Just that fact that he’s the driving force, that alone will make a difference. And it shows a lot of love from you guys.

    I am very sorry to read about his difficulty making friends. I know what a deeply painful experience that is both for him and for you guys. Just reading that feels like a punch in the gut, so hopefully with everyone aware of this and so attentive to his needs, the right solution will appear, make a difference.

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    1. Thanks for yet another thought provoking comment. It means so much to me that you have become a regular reader and are able to offer a perspective different from my own. I guess the thing I’m wondering most is can I be a stand-in for the friends my son doesn’t have right now? Does the time he and I spend together help stave off loneliness? I know it’s not a perfect substitute but I am hoping that it helps.

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