The Good, The Bad, and The Sheer Desperation of Trying to Include My Special Needs Son
by Emily Coleman
In my last posting, I brought up the “ah-ha” moment when I realized my son probably did want to be included, but struggled with it constantly. There are many ways my son plays with the family, but there are three times as many activities that are difficult to include him in. Recently, I’ve been working on that, with good, bad, and desperate results.
Last weekend, Eddie’s sister had a two-day basketball tournament. Eddie and I decided to go, and it included an overnight at a hotel. What we’ve learned this season is that Eddie doesn’t like loud, unpredictable cheering. Every time a team scores, he goes completely crazy. Yelling, hitting, kicking, stomping, and waving his arms in the air. Knowing this, I thought I was prepared.
I had headphones, snacks, and we sat by the door, with no alleviation of his auditory pain. So, after the first half of the game was through, we went outside. We had to make it through one more game, and I again had a plan. I sat him just outside the door in the hallway with snacks and headphones again. Then, I could stand in the gym and watch the game to support Molly.
That worked, almost the whole time. In the last quarter of the game, they started vacuuming the halls…of course. The vacuum is his arch nemesis. I saw him moving as fast as he could towards the gym and I knew something was amiss. We spent the end of the game sandwiched between a cheering crowd and a roaring vacuum. You can imagine how that went!
Luckily, when the game was through, we were able to hit up the pool at the hotel. This, Eddie loves…most of the time. That love diminishes when the pool is full of screaming children. He managed to still have fun, but the noise-cancelling headphones were a must.
Today, Molly and her friend had an activity for kids who were siblings of children with autism. We dropped off the girls, and then Eddie, his younger sister, and I hit the mall. All we needed was a pair of shoes for Eddie. That’s it! To keep it short, it was a nightmare.
I thought I had the mall-thing down. I thought I knew how to please Eddie for any amount of aimless wandering. I was wrong. Nothing worked, and we grabbed my best shoe-guess and headed for the door. Just when I think I know how to include him so everyone can be happy, I find myself shaken and desperate in a crowd.
Due to desperation, we went to the nearest fast-food joint that carried an option suitable for Eddie. Then, we quickly found a park. He spent some time swinging and drumming on the chain (as pictured), and then it was time to go. He was smiling, and laughing, and loaded into the van without complaint. I thought we were back to the “good.”
Until the drive home…where the “bad” returned behind my seat and I thought I’d need a chiropractor after all the kicking. I just can't always get a handle on things. The glimpse of happiness that comes when we’re out of the house makes it worth it…most of the time. Today was not one of those days. Honestly, we might have both been happier if we’d had a “pajama day” instead.
Re: The Good, The Bad, and The Sheer Desperation of Trying to Include My Special Needs SonPosted by Susan Harper on 3/23/2014 at 11:18 AM
Doesn't sound like that bad a day, really. Some of us get used to a different normal. There was some good stuff happening. Seemed like a pretty successful outing, with a few glitches. What's a good outing with out a good story. I know it takes a lot of extra planning. For starters, I hate shopping with kids. I'm with Eddie, I don't like ball games. I particularly don't like pools full of screaming kids. So there you have it. Eddie and I aren't so different. I'd love some noise canceling headphones for when my kids start acting up! LOL Hope you realize this was tongue in cheek, with a chuckle.
Re: The Good, The Bad, and The Sheer Desperation of Trying to Include My Special Needs SonPosted by EmColeman on 3/23/2014 at 2:19 PM
You’re right Susan, in hindsight the rough times don’t seem too significant. However, in the moment, they can be extremely difficult. When I’m in tears (which does happen), I don’t notice that it’s not “that bad.” But, I do gain perspective with time, which is why I keep trying…and planning for including Eddie.
Re: The Good, The Bad, and The Sheer Desperation of Trying to Include My Special Needs SonPosted by Cparso41613 on 3/24/2014 at 12:14 PM
You are doing wonderfully! Eddie is lucky to have you! All the pre-planning in the world (and I know we do a lot) cannot always help us get through an event flawlessly, but we do get through it. And I feel that our children learn from each experience, even if it is not an especially calm day.
Re: The Good, The Bad, and The Sheer Desperation of Trying to Include My Special Needs SonPosted by navgirl on 3/26/2014 at 8:10 AM
Thanks as always for your open honest sharing. I have been struggling with this recently as well. My son is all about going to the birthday parties and will talk for weeks about it, then when we finally get there, its a screaming crying mess for him. He gets so overwhelmed that the littlest things set him off crying, for example the last one we went to actually had pudding (he hates birthday cake) so he was super excited that they finally had one of his favorites, unfortunately they also had oreo crumbs on the top to make it look like "dirt" which apparently was an unacceptable method of delivery, and I did not get all the crumbs out. amazing for a a kid with such low vision to be able to spot microscopic oreo crumbs but he did. anyways, he has had these reactions at several parties including his own, so that this year as we approach the birthday party summer season, we are going to seriously rethink how we approach them. one tip at least for my son is, if he does not eat well before leaving home and you add in "hungry" to the mix, well thats a definite recipe for disaster. thanks again for sharing, helps me feel not alone in the search for what works for our kids
Log in to Post a Comment