Sometimes you have to exclude your child with special needs from the fun events the rest of the family is going to enjoy. You will feel very guilty. It will be OK.
Cerebrally, it will make sense to you, but your heart won’t forgive you. I’d like to say that it gets easier with the passing years, but I haven’t found that to be true.
The four of us (everyone but Jake) are climbing Katahdin on Saturday, and everyone is looking forward to it. Jake typically hates hiking, and complains from almost the minute we leave the van. A ten mile hike up Mt. Katahdin will kill him. He has the physicality necessary, but lacks the mental fortitude. This is a kid who complains that he’s tired after 30 minutes in the Bangor Mall. This is why I’ve made other arrangements for him.
Watch this video compilation of the last “big” hike we took as a family. Pay particular attention to the last minute or so.
Last night at dinner, we were talking about it and (gasp!) Jake asked if he could go. I told him he was going to spend the day with his grandmother. He was not pleased. He wants to go, he says. I explained to him that it’s a long way and that he can’t turn back once we’ve started. He didn’t care. I reminded him that he hates hiking. Still, he didn’t care.
I made the brilliant and predictable parenting move of having him prove his determination/worthiness to me. I said that we’d go for a brisk 5 mile walk around town after dinner and if he could do it with a smile on his face, and not fall too far behind, then he could come with us. “Tonight”, he asked? Yup. It’s cold, windy, and drizzling; but let’s go.
He reluctantly agreed and held on for about a half hour of marching up and down the hilly streets of East Millinocket. He was as stoic as I’ve ever seen him, and was beginning to wrap my head around the idea that he would probably HAVE to come with us, when he finally broke. He got a little frustrated with my relentless turning AWAY from home, and not returning to it. He had asked me how long it would take about a thousand times. He wanted to know when we’d get up (4:45 a.m.), how many miles (10+), and how long we’d be gone (over 12 hours).
After he finally got grumpy, I told him that it’s that kind of thing that makes me not want him to go. He’s going to grump all day, not have any fun, and bring the rest of us down with him.
“That’s not fair!!”
To be honest, I’m not sure if this is a genuine expression of emotion, or just something he’s picked up via echolalia and is regurgitating it at the opportune moment. I’ve never heard him say it before. Were we having a moment? We slowed our pace, and I asked him what he was thinking.
He told me that his muscles are all grown up and he won’t get tired. I told him that I know he’s strong, but he just doesn’t have very much fun hiking. I want to be with him, but I want to make sure he’s having fun. After quite a bit of back and forth, he conceded that he wouldn’t go on Saturday. I hated to talk him OUT of doing something, but I know he won’t buck up and soldier on when things get tiring.
On our way home, arm-in-arm, we settled on a compromise: he and I would tackle a short hike next week (ice caves or Blueberry Ledges or something), and if it goes well, we’ll try something bigger. If that goes well, etc. etc. He said he wants to make sure it’s the five of us.
That’s when I realized that it wasn’t just the hiking that he was missing out on, but the family togetherness/inclusion that he was longing for. That hurt. I promised that we’d all go.
He agreed with my plan, and we made it home in time to video another round of us playing Mario Party 10 for his YouTube channel, something we all gather together and do for/with Jake all the time. That’s the difference between us – we can suck it up and play a game on film for him, all the while acting excited and whooping it up. He can’t make it to the trailhead without complaining and bringing down the whole hiking party.
I love my son, but I loathe the idea of dragging and coercing him up and down Mt. Katahdin. We’re going to go and try and have guilt-free fun without him, and he’s going to hang out with Meme and watch SpongeBob. Not fair? You bet it’s not fair. It’s the sucky choice, but sometimes it needs to be made.
Wish us luck.
Have any of my readers ever had to set one kid aside for the benefit of the greater good of the group, disability or not? Should I risk the enjoyment of the group and bring him along? Prove to him he’ll survive? Teach him a lesson? I welcome your thoughts.