Monday, November 13, 2017


When you have children, you assume that you will at some point get to share the fun things that you do in live with your kids. You assume that you will, as they mature, be able to play and enjoy life.  When you have a child with special needs, that assumption goes down the drain. In my eyes, that’s one of the biggest tragedies about the surge in disabled children that we see in todays society.  And if you don’t have the experience – its very hard to wrap your head around the true social isolation that comes with a disabled child.   There’s absolutely a financial component to this on top of the actual inability of these kids to do STUFF – respite care (a fancy way of saying babysitting in the special needs world) is anywhere from $10-$20 and hour and up.  The kids might be runners (who wants to put their kid on a leash just so they can go out?  So much judgement and side-eyeing by everyone elses)… they may be too sensory aversive to deal with crowds and noises… they may not have the actual ability to sit for more than a few minutes, they may be inappropriately noisy, they may be violent to themselves….. they may smell bad because they’re not potty trained, etc….   If you don’t live it, you cannot possibly imagine how soul-crushing it is to have a child who cannot be taken in public without serious ramifications. 

Most of you who have known me for a while know that when I was in College, I learned to really enjoy college hockey. I like hockey specifically in person – not on TV.  There’s something about the energy of the crowd that I really enjoy.  For the last 12 years, we have gotten childcare and gone to Colorado College  games a few times a season.   About a month ago, I floated the idea to Rod of bringing Dominic along to one of the less attended hockey games to see how he would do.  That arena is crowded, loud, echo-y and we really weren’t sure if he could handle it.  After talking about it for a bit, I bought tickets for the whole family to attend the game this previous Saturday night.  I think we both expected Dominic to manage for a bit and get bored and want to leave. 

We started the evening with a family dinner at Dominic’s favorite restaurant, and the only place in town with a gluten free fryer dedicated to French fries – Red Robin.  With the game starting at 6pm, we figured we wouldn’t have to wait at all and would have the opportunity to completely stuff him with fries.  What we forgot was it was veterans day – and Red Robin was giving away free meals to veterans. Ooops.  We waiting a solid half an hour to sit, and had no phone signal to let Dominic play with youtube while we waited. Oops.  He got squirmy and wanted to leave.  It was not a good sign on how the game would go. 

We finished our dinner, and made it to the arena in time to see the warm up.  We had relative good seats – strategically I wanted to sit as close to the ice as possible so that there were fewer people in front of us in Dominic’s general field of vision.   So we go to see pucks up close and personal J .  Every time a puck hit the glass, Dominic hooted “OW!!” and laughed maniacally.   What I’d worried would scare him, he found hilarious.

Very shortly into the game, I posted on facebook  “Might have underestimated his love of screaming”.  Because he CHEERED, he clapped, he screamed at appropriate times… it was so cute to watch.  At the end of the first period, it was apparent that he was loving it, and I bought him a shirt.  Here he is practicing his Tiger Roar (the mascot of the Colorado College Hockey game is a tiger).

At one point I looked at him and found him in classic sports watching pose, with his elbows on his knees intently watching. 

We figured we were home free at the game and what was left to determine if we would repeat the experience was how well he wound down when we left. Because he was AMPED up. 

CC Won!  There was much happy screaming.  WE came home, it was around 8:30 – put the ducks to bed and Dominic asked to watch Dr Who.  So we watched a Dr Who in mommy and daddys bed until his eyelids were super heavy and he passed out in his own bed not terribly late for a weekend.  WIN!!!!

I am so proud of how well he did, and so proud of the work we have done to help him get to this point.  So today, I’ll be buying tickets to the Big Game  - CC vs DU, in a few weeks.  And he will wear his new shirt and we will have a wonderful time.  As a family.  I cannot communicate to you what an exquisite treat it was to actually do something FUN like this as a family.  It was an indescribably large step for Dominic and us.  I am incredibly grateful for the path we  are on and  the supports that are making such a difference. 


1 comment:

Jennifer Edwards said...

What a great story. The first time we ever took our oldest to a hockey game (we had partial season tickets before him), he was only 18 months and the air horn had him in meltdown mode. Only we just thought he was a little scared back then... in hindsight, it was our first "sensory" meltdown. Now with 3 children, we don't do hockey anymore :( It's truly sad. I completely relate to your first paragraph above about how you envision your experiences with your children to be and how they don't pan out the way you thought when you have children with special needs. We are still grieving this here. Dominic's story has me feeling hopeful that things will change in the future. We had a really great day on Friday at Universal Studios, and for that I am exceptionally grateful. They still refuse to do most rides and experiences, but they did try a few new things they initially refused (like the ET ride, the Minion Mayhem experience and the Terminator ride!!!), so it was a win. It really helps us to appreciate the small things that many other parents take for granted :)