Tag Archives: special needs

our pit completed… in-ground trampoline

How in the world can you make a trampoline accessible?

Thanks to one of Meredith Sinclair’s (Hoo-dee-Hoo) tweets, I found the perfect solution in an in-ground trampoline. Didn’t take much convincing of Otis Carter (Carter Albarran Landscape Group), our amazing landscaper, to give it a try. Now, our guy with cerebral palsy can walk right out onto it & bounce to his little heart’s content.

We might be the only people here in the arctic, snowy climate of Chicago to have attempted a pit trampoline- we’ll see how it fares after a blizzard or two. For right now, it’s just a lot of fun.

vintage-twisted

Whooo-hooo!


come to Holland with me!

I came across this essay years & years ago, when Kyle was a baby, and it helped me express our experiences to our families. It still speaks for me- with hope and truth, optimism and reality.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.


Can you call a pit gorgeous?

The kids have been dying for a trampoline and I have serious reservations- the biggest is how is the 10 yr old with cerebral palsy going to get on?!? And off? And around the netting? Without, of course, breaking my back by lifting him up. We thought about building a staircase, perhaps with a platform, but it seems that might cause more problems than solutions.

Can a trampoline be any more unsafe than the way the kids are dangling, hanging, jumping, and twisting off the second story of the soon-to-be replaced play structure? As soon as I say, “You can NOT do that!” they come up with a new crazy, daredevil antic to perform.

And what floats across time & space and lands right here, on my computer, through a friend’s tweet? This! Known as a sunken, pit, or in ground trampoline.

vintage-twistedThanks to Babble, an amazing blog, with a lot of information for all, for posting these . Check out this post to see other backyard beauties…
vintagetwisted

After some initial research, it seems that a drainage system is a must, along with some type of retaining wall. Do you have any input? Suggestions? Concerns? Send me a comment & some help!


a hospital waiting room list…

What to take to a Hospital waiting room…

So I was thinking, perhaps my hospital experiences might help some of you out there. Now, you’re stressed as your baby or spouse or somebody else you love has to go in for surgery. You’ve done the research, this needs to happen, you’re out of options. You can barely even think about the procedure, much less think about beyond that.

But, no matter what, you’ll be sitting in a smallish room with lots of other people, waiting for a lot of hours. There’s often an attendant that will take your name so they can contact you to give you updates of your patient or reach you when the doctors want to meet with you, and sometimes coffee, but that’s all.

Here’s my thing-  I don’t leave the waiting room. I know it’s superstitious, but I feel as long as I’m there, nothing’s going to go wrong. Stupid, right? We both know it, but so far it’s working for me. So I pack for the duration. You might choose to go for walks, check out the gift shop, snack in the cafeteria, visit the chapel. For me, I stay put. Either way, if you go or you stay, there are some things that will make that wait a little more bearable:

drinks & snacks, snacks & more snacks- and don’t forget the chocolate! Mostly I bring healthy- yogurt, fruit, vegetables, nuts, but seriously, sometimes you just need Cheetos & M&Ms.

magazines- People, Rolling Stone, or any other short reads for those times you can’t concentrate

$$$- just in case

music & headphones- sometimes the other people in the waiting room, nice as they might be, drive you nuts

something to do- knitting, letter writing, computer, movies, anything that keeps you busy

a good book- when you need to visit a different world. I always bring one, but can rarely concentrate on it.

address book- so you can call everybody else & tell them how it’s going

don’t forget your phone! Pretty obvious, but it happens…

I also throw in a couple of overnight essentials: contact case, toothbrush & paste, glasses, deodorant, for those unexpected overnights.

Is it harder to wait for a patient or be a patient? They get a long nap & drugs. You get to wait and wait and wait…


Will you finish strong?

Really, what will you dare to complain about today?

Nick Vujicic


Biking for all!

We found an AMAZING bike shop last spring, The Bike Rack, in St. Charles, Illinois. In addition to selling traditional bikes, Hal Honeyman will fit and offer advice to help kids with special needs find a bike that works for them. Hal began adapting bikes for his own son, Jacob, and now adapts traditional bikes with such specialty items such as extra wide tires and belted seats, and also offers adaptive bikes and tandems.

Look at the red beauty Kyle got at The Bike Rack!

To find out more about The Bike Rack, Creative Mobility & Hal Honeyman, check out this YouTube video:


Hoo-dee-Hoo!

I was a guest blogger today on Meredith Sinclair’s VERY popular blog/vlog, Hoo-dee-Hoo. Check out the short piece I wrote on my attempts to help children find ways to connect with a special needs child, especially mine.

You can find Meredith, the effervescent, funny, calm-in-the-storm we’d all like to be, by clicking on the link below.

VintageTwisted