Learning To Be an Advocate

The other day, I wrote about having “The Talk” with Ryan’s sports coaches. Though such conversations initially made me uncomfortable, they were part of a years-long process of both acceptance of Ryan’s diagnosis, and of learning to be an advocate for him.

That entry made me recall the first time I truly realized that advocacy for my son went beyond an IEP meeting.

I attend the NHL All-Star Game for work every year. I had always thought it would be fun to bring the family along, especially after both kids became so interested in hockey. Veronica, quite reasonably, was less enthusiastic. She knew that the trip would mean long days of managing both kids away from their comfort zones while I was off working late into the night.

Mascots
The smiles were a nice gift, but it was the lesson learned that made the trip worth it.

Nevertheless, she agreed to make the trip for the 2011 game in Raleigh, N.C. — because she’s an awesome mom.

I thought Ryan would be in heaven. The entire city was decked out in hockey decor. The hotel we’d be staying at had team logos and player murals all over. There was a kid-friendly hockey fan festival, and of course, the skills contest and the game.

Both kids wore hockey jerseys on the plane. Ryan packed a different one for each day of the weekend. As soon as he stepped foot in the hotel, he was off exploring all the hockey displays in the lobby. We quickly headed over the fan festival since I had an hour or so to spend with them before I had to head off the arena.

Things started well. Ryan was exploring the various exhibits and trying to decide which one he wanted to try first. He played some video games and got dressed in the uniform of his favorite player, San Jose’s Joe Thornton. I said goodbye to Veronica, wished her well, and headed off to the rink to prepare for the skills contest in a few hours.

Yeah, about that “kid-friendly” fan festival? Not so much for a kid on the spectrum. Soon after I left, the texts and calls from Veronica started arriving, in increasingly distressed tones. Ryan wanted to try one of the hockey skills exhibits, and had gotten in line. But the line was over an hour long, and halfway through, he started to decompensate. He could not stand being in line, but he refused to give up his spot. This went on for another 30-plus minutes.

It was such a helpless feeling, receiving the text updates from Veronica about how he was having a meltdown in line, falling down, getting stares from everyone. I knew she was trying every trick in her arsenal to get him through the experience. He insisted on seeing it through. Eventually he got to the front of the line, where he had a minute or two of navigating the hockey obstacle course before his turn was up.

At this point, the plan called for Veronica to get both kids on a bus to the arena for the skills contest, but she was ready to pull the rip cord. She didn’t, of course, knowing how much Ryan wanted to attend the event, but it was all she could do to keep her composure after watching him struggle so badly.

Things got worse. There was a wait for the bus, and a wait for the skills to start. I came upstairs from my work area to meet them at the arena, and I could tell how frayed the nerves were. Ryan was bouncing off the walls, desperately searching for food he would eat and the bathroom. Riley was exasperated, and probably somewhat embarrassed, from watching her brother’s behavior. Veronica was shooting daggers at me for having suggested the trip, then leaving her to navigate Ryan through the crowds. I felt like an idiot. How could I have not foreseen this? Trips to places like Disney and Hershey Park had taught us that long lines and Ryan were not a good mix.

But in my rush to get my hockey-loving son to a weekend-long celebration of hockey, I had overlooked the logistics. With both of us attending to the kids, it would have been easier. Instead, I had left Veronica to fend for herself because I had to work. I was angry at myself for putting her in that situation. It was unfair to her, and it was unfair to both kids. I should have known better.

By the time the skills contest ended, Veronica was ready to catch the next flight home. The contest ran long, and Ryan was exhausted. He wanted to go back to the hotel and go to bed, but he also didn’t want to miss anything. Veronica was exasperated. When it was over, there were long lines for a bus. Finally, they caught a bus back to the hotel, but not before another near-meltdown. I exhaled once I received the text that they were in bed and going to sleep.

I was a wreck, racked with guilt for having arranged the trip, and angry that something my son should so enjoy would turn out to be so difficult. I apologized to my boss for being virtually useless that night. I couldn’t concentrate. By the time I got back to the hotel well past midnight, it was all I could do to climb into bed, snuggle with Ryan, and fight back the tears.

The All-Star Game was the next afternoon, and we would have to repeat the process. Staring at the hotel ceiling that night, I didn’t see how it was going to get better.

Veronica and I were both depressed in the morning. I went down to the lobby to get us some coffee and I happened to run into a friend who was involved in running the fan festival. He mentioned that he had seen my kids the day before and asked how things were going, thinking they must have been having the time of his life.

I’m sure he immediately regretted his decision to make polite conversation, because I unloaded my troubles on him. I told him that the day had sucked, that I regretted having the kids come down. That I was a moron for thinking my son could tolerate long lines.

He looked at me like I had two heads. This was not a close friend, more of an associate. He knew nothing of Ryan’s diagnosis.

“Why didn’t you tell me?” he asked. “Let’s get you some VIP passes. They’ll allow you to skip the lines.”

I didn’t want to do this. The thought of even setting foot back in the fan festival made my stomach turn. I didn’t like the idea of jumping in front of people in line.

But I took the passes from him anyway, and thanked him profusely. As I made my way back to the hotel room, a light went off.

It was my responsibility to advocate for my child.

Asking for some accommodation for him so he could enjoy what should have been an incredible experience rather than have it induce a major meltdown was no less an act of advocacy than demanding he receive appropriate services in school.

When I got back to the room, I discussed it with Veronica. She didn’t want anything to do with a return to the fan festival either, but the more we talked, the more we both got on-board with the idea. We wouldn’t abuse the front-of-the-line privileges — we’d pick our spots. If it made us uncomfortable, so be it. This wasn’t about us.

It was about what we needed to do for our child.

In the end, we only used the privilege once or twice. Because when we got back to the fan festival, we ran into mascots. Lots and lots of mascots. Ryan and Riley got their pictures taken with nearly all of them. They had a blast. The smile on Ryan’s face in each picture quickly allowed the sour memories of the day before to fade.

From there, they went to the game. The NHL All-Star Game does not look like a normal hockey game. There is no defense played. The final score was 12-11. Most hockey fans dismiss the game as a silly exhibition. Not Ryan and Riley. Twenty-three goals? Why, that just mean 23 goal horns!

I was thankful the trip ended on a higher note.

But the real value of that weekend was the lesson it taught me about putting aside my own feelings of discomfort in order to do what I need to do to advocate for my son.

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15 thoughts on “Learning To Be an Advocate

  1. I think that once everyone that isn’t directly affected by a challenged child/teen/adult becomes an advocate things will become better. I know I try to share with people whenever/where-ever possible. Information is knowledge and knowledge is power.

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  2. I think it was Judith at Autismville that once posted about her discomfort in using a disability pass for her son with autism at an amusement park. Her husband pointed out that our kids are not good at waiting because they have spent so MUCH time in their lives waiting; for doctor visits, therapy visits, specialist’s, etc. If using a pass means that for once they actually can skip waiting and get more easily to something that is pleasurable, we as parents have to get over our discomfort for the kids’ sake.

    In our case, the pass usually just makes it easier to bail out of an experience that looks on the surface like it might be fun, but in reality is too frightening or difficult. So if we get to the front of the line but then discover our son really doesn’t like the water raft, or the slide or whatever, we can take the quick exit out and move on to something more appropriate without a giant meltdown and without up holding the entire line of customers.

    But I agree, I’d much rather wait in line with everyone else than feel the staring daggers in my back from those who think we are unfairly “jumping’ the line.

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  3. This was a really touching post. It doesn’t come naturally for most people to ask for extra or special treatment for our kids. In fact what we mostly want, more than anything, is for our kids to just enjoy themselves on a regular outing. But that it is not our lives now is it? We have kids where we need to plan, prepare, rehearse, predict, have our plan B’s & C’s & D’s, if there’s anything that can make that a little easier – brilliant! And if that means getting a little extra help and, miracle of miracles, that help is offered, the planets are aligning!

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