Thursday, January 5, 2012

Raising kids with special needs: Sit back, relax and enjoy the ride

Among the many glorious sites we enjoyed during our visit to Park City, Utah:

Park City, Utah's free transit system; above, Max on a bus.

The St. Regis funicular, a posh tram with leather seating that takes you up to the hotel.

The lift to Canyons ski resort.

Deer Valley Resort's fleet of 30 Cadillac Escalades, used to transport guests. We all loved the automatic "assist steps" that popped out when you stepped in.

Not pictured: Deer Valley Resort's shuttles. Or the Range Rover we rode in when we visited the Montage hotel. Or the airport train we did a loop on before we went through the security line, even though we were already in the right terminal.

Yes, it's true: I spent part of my vacation riding around in various modes of transportation, and often we weren't headed anywhere in particular—Max just wanted to ride. The day we visited Canyons, riding the lift is pretty much all we did, outside of a hot chocolate stop. Another afternoon, Max and I made several loops on a Deer Valley shuttle.

And one afternoon, we repeatedly rode up and down the funicular. A couple who'd gotten off returned 20 minutes later to find Max and me still on it, looking like permanent fixtures.

Years ago, I would have resisted letting Max ride around aimlessly. Way to waste a good (and not cheap!) trip, I would have thought. How boring. I am not going to give in. Or maybe I would have given in and just sat there, feeling bummed that this is what my life had come to: riding around shuttles on vacation with a kid who only wanted to sit in the back seat and peer out the window at the passing scenery.

But that was then. Now we make this part of our vacation, and either Dave or I ride around with Max on the local forms of transportation (and around and around and around). I'll talk about stuff we pass by, check my email on my iPhone, relax. We do this within reason: If we're taking up seats on a crowded shuttle, we get off. Or if Max had, say, wanted to eat dinner in the funicular, I wouldn't have let him, because I'm a tough-ass that way. Although we did have a leetle snack.

Letting go of perceptions of the way things "should" be with Max, on vacation and otherwise, has taken me a long time. I so wanted him to enjoy life the way the rest of us did. But being on things that go is Max's idea of fun, more so than tubing or visiting a museum, and I've come to realize that.

Sometimes, I still impose my own ideas of happiness on Max and my spirits crash and burn when things don't pan out, which is what happened at his birthday party this year. But mostly, I've accepted Max's quirky sense of a good time. It's helped me stress less, let go of sadness and sit back, relax and enjoy the ride.


  1. Remember the SATC episode where the Candice Bergen character says to Carrie, "You can have it all" (or "it can be perfect" or something to that effect")..."you just have to let go of your idea of what that would look like." Definitely applies to these vacations too (or birthday parties...). You have such a good point- once you let go of how vacations "should" look- what activities your kids "should" do- you can relax and enjoy their enjoyment of the quirkier things--even if it's taking the same ride in the same vehicle over and over. On a trip to Hershey a few years ago, we must've gone on the same escalator hundreds of times. One floor up, one floor down. One floor up, one floor down. This is what my son wanted to do. Not once piece of chocolate, nary one ride. This was his joy on this trip. It is a real blessing being able to "let go" and share in that joy, no matter what other people are saying, doing, or thinking. Thanks for this reminder, as always.

  2. You have totally figure it out - just to enjoy Max for what he gives you. I stopped wondering why myself - took me awhile to get there. Three words that helped me teach were "Let It Go." Now 2 words that help me with trials are "Look Up." Did you read my post on "Why I'm Glad I Have a Special Needs Child?" Here is the link when (LOL) if you have time: or visit my blog and click on Special Education. Have a wonderful day with Max. We're off to ride the zoo train for the zillionth time and swing in the park even though I"m older than dirt. Happy Trails.

  3. This is on my 'to work on' list. I do have a hard time letting go and letting my son with Ds choose what he thinks is fun, not just what the rest of us think is fun. I want things to be perfect and magical. He wants to be comfortable and in his routine. It is hard! I am working to find that line between pushing him a little outside his comfort zone to experience new things, but taking his wants and feelings into consideration when planning family events and vacations. Thanks for the great post! :)

  4. Definitely good advice and something I need to work on more with our son Zac. Thank you for this post!

  5. THANK YOU! This is exactly the post I have been needing. It might have taken me 8+ years, but we actually had fun for the first time on a small trip to Hershey this past week. I think it was because I finally decided to just let us be. I keep trying to make Max do whatever everyone else is doing and then I am disappointed when he can't or when he won't. If I can just remember these valuable lessons, we might actually begin to find a bit more happiness.

  6. Thanks Ellen. Once again you've put into words what we've learnt with Ashley. His idea of happiness is never going to match ours but so what? We learn what makes him tick and go with it.

  7. Recently found your blog through Parents magazine and I love it! I am the parent of two typically developing boys (so far as I know!) and I can honestly say that I could spend a whole vacation riding around with them on various forms of transportation. Or watching trucks, trains, construction equipment. Its on the Y chromosome.

  8. In the London one of the Underground trains ran in a complete circle until a few years ago. People used to have Circle Line parties, I bet Max would have loved that!

    If you ever have the chance I bet he'd love trying out a transporter bridge too. My friends and I took a picnic on the one in Newport!

    Loving vehicles is a pretty normal thing really, especially for a boy Max's age.

  9. You are such an inspiration! I am trying so hard to reach this point in my life but haven't arrived yet! With your help I may get there some day though! Thanks for a great post!

  10. I can relate. My daughter's in her puzzle phase. She's not able to do them by herself so it's mommy to the rescue. Over and over again. "Mom play puzzle. More puzzle." Somedays I feel like my child is the puzzle when I can't figure out why it's all she wants to do. Still, I just relax and enjoy sharing with her, even if it's become more routine than brushing my teeth. Thanks for the post.

  11. I wish everyone was like Max nobody takes time to stop and smell the roses anymore. We have all become human-doings.

  12. to a certain extent, don't we have to change our idea of a good time whenever we have kids, whether they have special needs or not? i was telling my childless friend about our favorite restaurants to eat these days, and the vast majority of places are our favorites because they are kid friendly. did i love these places before i had kids? no way jose. but now it makes me happy for my kids to be happy and have fun. and it helps if the place has good beer, too. ;)

  13. Thanks for the post, Ellen. My ten year-old son still loves stuffed animals, the "cuter" the better (think pink with hearts). I've been encouraged to steer him towards more age/gender appropriate activities. I struggle with doing that vs. giving him the sheer enjoyment of what he likes. So, he just had his 9th surgery, and I gave him a super-cute stuffed animal!


Thanks for sharing!

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