"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” :-).
14 People Replies to “"I wonder what Kyle wants to do. If only he could tell us."”
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My Son is very verbal, but does not communicate well. And it seems like when I need him to communicate the most he will clam up and go silent. I can't imagine what all of you go through on a daily basis when your children are nonverbal. I have a hard enough time with "selective" nonverbal days.
I'm glad you had a nice time away, we love the beach.
I can relate as well. My son is almost three and is also non verbal. And just like you, we think we are offering him what we think he wants, but as you said, who knows what his real wants are. Its all a guessing game for us. Im hoping, and I still hold on to that hope cause thats all I have right now, that one day, he WILL talk. He will talk and tell us how lousy we were at the guessing game 🙂 Kudos to you and your wife. You are amazing parents…
Oh how I can relate,@ times I just wish he could tell me something. He get speech @ school,we try pic's,signing,but nothing and now I find out the school is cuting back on speech,ot, so I have to see what the insurance will pay for but after talking to them not much.I have l have learn the hard way people just don't care if it don't affect them.
When I found our my son liked vanilla instead of chocolate I was stunned. I felt like a heel. It seems small. But years of not getting the ice cream you REALLY want. And it stands for all the other things I can't figure out. Like needing to go pee. How nice would it be if people didnt have to guess? Or make you go because the grownup needs to pee?
My daughter is a little verbal. At a Girl Scout event last spring (she was 10), they gave out coupons for cupcakes. I told her to get in line and when you get to the front of the line give them your ticket and say 'vanilla please."
She asked me "Why?" and I said, "Because you don't like chocolate." And she brightened up and said, "yes, that's right!" AND she came back with a vanilla cupcake.
She will take something if it's chocolate b/c she doesn't like to be left out but usually takes one bite and throws the rest away.
As she became more verbal things got much easier, b/c some things that were really important to her were easily granted (like vanilla vs. chocolate). — Meg
My seven year old is non verbal but uses a augmentative/alternative communication device. He still has plenty of those moments where he just can't or won't use it to tell us what's wrong. We had a breakthrough last month when he was able to tell us, after ten minutes of prodding and guessing, that it was his head that hurt. We still don't get to hear many of his thoughts and it is a special treat when he answers "yummy" with the device when asked how the food is. I hope someday he can spell and type and all that as right now he is confined to the boardmaker images we have programmed in there. I'm rambling now but I do totally relate. Even though he has a voice thanks to his device it still hurts to wonder what he's thinking, what he might be hoping to do or see that he can't express.
So glad your family was able to get away for some fun time! Wish we lived closer to the beach! My kids would love to spend time there.
We would like to take a mini-vacation, but are concerned about how our son will react to everything. Our biggest concern is the sleeping arrangement. How will he settle down? How will he sleep? Will I be too paranoid to sleep?! I always overthink everything! Maybe some day…….
Love your story.I just wanted to say even if he could talk he probably would not tell you whats bothering him for my Autistic son is able to talk but never tells us when something is bothering him except he will message me through his cell phone if I ask him in a text but not all the time.My son communication has improved greatly since able to text and has helped his verbal skill. I hated not knowing what my son was thinking or what he like or didn't like.I wish I would have introduce the cell phone sooner instead waiting until he was 13. I feel for the pain of not knowing and the fun challenge of trying to figure out whats going on.
We (my ex-husband and I) both feel the same about our son who has moderate classic autism. He only has about 100 words. We have gotten pretty good playing the 'guessing game' tho over the years. 😉
I think he did a pretty good job of communicating his wants and needs with you over the weekend and I think that you and the wife are pretty good at reading them. However, I completely understand your desire to have your interpretation of what he wants/needs confirmed verbally by him. Maybe…someday…you just never know!
I can relate. My boy is 10 years old and is trying to communicate. He will say I wan "ehuhoh." That will start do you want this or that. He lets out a sort of scream when I am wrong.
he is starting to write and that helps. Today he wrote liary. I knew he met library. Helps but I wish I understood more
My daughter is 5 and non verbal. 2 words Verbal Behavior- in 2 days I have gotten her to use more gestures and use the I-Pad to communicate her wants. 3 years of Language therapy couldn't get her to say a word.
I feel for you AD