Friday, April 11, 2014

Have Kid with CP; Will Travel

Flying with a three-year-old is never fun. Add to that an enormous amount of luggage to keep said three-year-old upright and you have a ghastly mix.

A few days before our recent surgery trip to New York, I acquired a hand-me-down medical stroller just the right size for Malachi. This thing is pretty robust and has those metal loops used to tie it down inside accessible vehicles. I was stoked because I thought it meant that we could just roll it onto the plane, they would remove a seat, lock the chair down and then Malachi would happily play with his own tray for the whole flight.

I was wrong. Apparently most airplanes (I hear Southwest is an exception?) have zero accommodations for people in wheelchairs. The standard process is to roll yourself down the gangway to the door of the airplane. Then they either move you bodily or with a sling-like mechanical Hoyer lift into a narrow "aisle chair." From the aisle chair you are moved bodily into a regular seat, where hopefully you can keep yourself upright. Meanwhile, your very expensive and very personal wheelchair is rolled away by strangers into the luggage compartment, where things can (and do) fall on it. As you can imagine, this makes air travel unappealing for most people with disabilities. An easy fix would be to have a removable seat in the handicap aisle but it seems there is not very much momentum for that idea.

As it was, on the eve of our trip, I have to figure out how I am going to handle Malachi's seating needs, not only for the flight, but once we had arrived. Fortunately he still fits in our go-anywhere Maclaren Volo Stroller .




I love this thing so much. I don't know what we will do when he grows out of it.

Anyway, then I needed to figure out how to put Malachi in the airplane seat and what I would use for a feeding chair. I complained about these things to a local United Cerebral Palsy forum and the parents there said they've had to use FAA-approved car seats to lock in their kiddos. I knew from a previous short flight when he was 2 that the fold-down tray would be too far away from him and I was not about to strap him to a seat for five hours without something to play with.

So, here I am carting a stroller, a non-mobile 3-year-old, a car seat, a tray, a diaper bag and a backpack through the airport like a madwoman.

The flights themselves were fairly uneventful thanks to the magic of the iPad and two very pleasant seat mates. Annemarie of Vancouver and Cheryl of Portland, wherever you are, thanks for your help!

This Bambinos Tidy Table Tray is one that we got a while ago at Babies R Us. It is very handy as it snaps on directly to a table, but we use sticky Velcro to strap it to his car seat and it can go anywhere.





But wait. There's more. Because I didn't talk about checked luggage yet did I? I had a massive roller suitcase packed as lightly as I could for nine days on the road. But the real problem came from the Mulholland Walkabout pediatric hands-free walker that I brought. In hindsight, I really SHOULD NOT have brought it, but I had the impression that the doctors would want to see him in it and that it would be necessary for post-operative recovery. Neither of those were true.

Instead, I carted this very heavy and awkward thing all the way across the country and back for no good reason. At the PDX airport, the desk attendant was about to charge me luggage fees for it but then I remembered the magic phrase I had heard from another mom on the UCP forum: "orthopedic device." As soon as I said those magic words, the check in process went smoothly.

I had also heard from others that baggage carriers are not as gentle as we might like with our children's medical equipment, so I wrapped both pieces of the walker thoroughly in bubble wrap and plastered Fragile stickers all over it. Nevertheless, when we got to our lodgings on the East Coast and unwrapped it, it was clear that three of the adjustment screws had been snapped in half and a piece holding down a protective cover was broken and just dangling. Now that we are back home, I've also noticed that the metal frame has been compressed by something very heavy indeed. We are working with Delta to repair the damage.

Unfortunately, on our return flight from JFK airport, the magic phrase "orthopedic device" opened no doors. Instead, I had to explain three times to different attendants what the walker was for and why they shouldn't charge me for it. Meanwhile, my son is waiting in the car and I am getting very anxious about it. Finally a woman very rudely tells me that I need to go get him to prove that he is disabled. (WHY ELSE WOULD I BE TRAVELING WITH A PEDIATRIC WALKER??) By the time all of this is resolved, they can't figure out how to reprint my claim tickets, so they tell me they voided the transaction and ask for my card again. Sure enough, when I get home I discover they charged me twice for my one piece of luggage, so I essentially had to pay for the walker anyway. More than an HOUR after I began the check-in process, we were finally on our way.

I got through security and collapsed into a restaurant seat near our gate, with all of our carry-ons scattered around us, and had a drink. Or two.




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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


*Updated from the original to include link to Bambino Tidy Table Tray.

5 comments:

  1. sigh....flying is never good is it??!! sigh again! lol
    I'd love to know where you got the tray that sits of the regular seat tray - to move it closer to the child? Thank you in advance!

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    Replies
    1. Oh yeah! I forgot to talk about that. I've updated the post to include a link. It's not letting me post it here for some reason. :(

      Delete
  2. I take stroller everywhere we fly for the very functional purpose of holding the piles and piles of stuff we have to cart. It's easier to strap Taran on and push everything else. I feel your pain!

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  3. Oh my word. It really is a pain. We travelled oversees like this but I was not alone and Aidan's swanky stroller folded up and then put it in the closet on the plane for me which was awesome. Then there is the issue of a long flight and a bathrrom. That's a whole different conversation. Props to you!

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