"I wonder what Kyle wants to do. If only he could tell us."
July 23, 2012
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Now Reading: "I wonder what Kyle wants to do. If only he could tell us."
July 23, 2012
As you all know my son is 9 years old and has severe autism and is completely non verbal and has no true way of communicating. And as parents, my wife and I have been living this way for so long that we almost forget how strange it is that our kid can’t communicate.
The reason this popped in my head today?
We were staying overnight at a Bed & Breakfast Hotel in a beach town this weekend. If you’ve been reading my Facebook page you’ve been reading a bit about this trip and seeing some pics.
So Saturday we had a GREAT day at the beach. My son Kyle had a great time, his autism service dog Paula was extremely helpful and all was right with the world.
Check out this morning, Sunday, is at 11am, but my wife likes to squeeze every last ounce out of every vacation so our plan was to get up early go into town to get some breakfast, check out and then head to the beach. The B&B we stayed at was right across the street from the beach and allows guests to shower and change there even after you’ve checked out so we would use their facilities before heading home Sunday evening (Sunday night if the wife had her way 🙂
So Kyle wakes up Sunday around 7:30am in a fine mood. We go out to breakfast and all is going according to plan. Kyle’s ok at the restataunt. Not great, but not terrible.
Anyway after breakfast as we are walking back to the boardwalk it dawns on us. The beach town we are staying in has an ultra religious history so on Sundays they don’t allow anyone on the beach til 12:30pm. We look at our watches and it’s 9:45am. Now we’ve got almost 3 hours to kill and we have to check out at 11am.
So as we are walking back to our room the wife begins to rattle off all our options and the pros and cons of each.
Such as.. “We can go to the beach one town over right now. Their beach is open already. But then we’d have to give up our great parking space in front of the hotel and we’ll never get a spot later when we want to shower here.”
She rattles off a few other options that I can’t remember now and then I said “I wonder what Kyle wants to do.” And she said “Yeah I know. Wouldn’t it be awesome if he could tell us.”
I haven’t even had a thought like that in a long time. We spend so much time anticipating his wants and needs that we don’t even realize how crazy it is that our kid can’t tell us what he wants to do or what he wants to eat. We bend over backwards to give him what we think he wants, but who knows, maybe we’re wrong sometimes or a lot of the times.
Funny end to that story. We were having that conversation as we were entering the room. And in his own way Kyle answered the question “what do you want to do?”
He proceeded to curl into a ball on the bed and almost took a 10am nap. Basically he was content and THRILLED to stay in the room, jump on the bed, look at himself in the mirror, and watch Dora on his iPad. So that’s what we did until checkout. Then from 11-12:30 we stayed on the B&Bs porch and ate some snacks and waited til 12:30pm when we could FINALLY get on the beach.
We had another one of those “I wish he could tell us” moments as we were leaving the beach at around 5pm. We’re walking up to the boardwalk and mommy is holding Kyle and he starts crying. First time all weekend. First time in a pretty long while if memory serves.
Anyway he’s crying and then she leads him to those outdoor showers to wash the sand off. And the crying intensifies a bit. And she’s saying “The sand is probably bothering you. That’s why we’re washing it off. Help me out. The quicker we get the sand off, the better you’ll feel, and the quicker we can leave.”
He’s still crying and I say “Maybe the sand’s not the problem. I think maybe he doesn’t want to leave.”
We’ll never know the answer to that one but the sand didn’t bother him yesterday. I think he figured out from the day before that this shower means the end of the beach day. And he wanted to stay longer.
But we’ll never know cuz he can’t tell us. But whatever he was crying about he got over it quickly and was fine by the time we reached our hotel.
That’s it. So there’s a little vacation followup blog post and a quick post about how even after 9 years sometimes it dawns on me how strange it is to have a kid who can’t communicate with you.
But this didn’t ruin my weekend at all. We all had a GREAT time. Hope to come back and repeat it in a few weeks!
Over and out…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).