Traveling with Katie

July 10th, 2015

 

Katie didn’t know it, but she was about to embark on her first plane trip since coming home from Bulgaria more than three years ago.  I was unsure what it would be like to fly with a child in a wheelchair.  We took her along with us because Daniel was still recovering from extensive knee surgery.

 

Katie, 13 years, Benjamin, 2 years, and Peter, 8 years~

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Kate took the whole experience in stride…the looooong wait times for flights delayed by hours…the ensuing mad rushes to catch the next flight……the ear-popping steep descents.

 

Didn’t want to miss a thing~

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And the dramatic, heart-stopping flight through a thunder-and-lightning downpour in the pitch dark, swaying and dropping.  In a creaky little bus thousands of feet in the air.

She did look at me for confirmation that all was well during the worst turbulence.  Thankfully, she looked at my reassuring face and not at my white-knuckled grip on the arm rest.

She made her own fun during the boring wait times, and practiced her growing walking skills whenever possible.

 

Happy goofy girl~

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At the beginning of our travels, she tried her very best to catch the attention of every stranger who came within yards of her.

 

Here, she’s keeping track of where the closest stranger is~

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She almost seemed to understand that we were IN the plane, going UP, UP, UP in the sky.

 

Age 13, June, 2015~

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The contrast between the past and the present Katies were ever-present in my mind.

 

 Age 9 1/2, November, 2011~

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Although we didn’t lay our heads on our hotel pillows until after two am that first night, the children and I made it down to the indoor pool the next day while Daddy was in board meetings.

 

Just look at that beautiful chub~

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The children started out cautious and shy, as we are more accustomed to back country creeks for our summer water fun.

 

Katie smiling at the noise her finger made squeaking along the wet tile~

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Ben wanted no part of the warm spa water, but Katie and Mama soaked it in side by side.

 

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We wanted to encourage the children to venture out a bit more, so we stopped at Target after supper, and picked up…

 

Katie, utterly thrilled at the splashing noise and commotion~

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…some big floatie rings.

 

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I had been braced for a difficult week in a small hotel room with three young children, all our luggage, two port-a-cribs, a wheelchair, and a big adaptive potty.  I wondered where we’d find enough private space for her potty, where she couldn’t reach things she shouldn’t get into.

What a pleasant relief to find that a roomy handicapped-accessible family suite had been thoughtfully reserved for us.  Like a lot of life with growing and changing disabled kids, it will work for now!  Having the space that is appropriate for our needs makes all the difference!

 

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Warning:  Skip the next section if you prefer to avoid potty subjects!

 

***Right now, the hardest part of traveling with a growing Katie is taking her to the bathroom (including the itty-bitty airplane lavatory) when it’s not possible to utilize her adaptive potty.  It only works if I hold her in a squat position facing the back of the commode, sitting behind her, and it still takes about twenty minutes of holding her in this position.  (On her adaptive potty, she typically needs twice that much time.)  This arrangement is necessary any time we take her to a park or any other public place at home.  The toileting challenge is greatly increased if there’s no family restroom option provided, and the only handicapped-accessible stall is being used by an able-bodied person when there are plenty of regular stalls available.  [Just keeping it real and increasing awareness here, folks!]  It’s impossible to change the diaper of a large wiggly child like Katie in a typical restroom stall without fully exposing her to anyone who might walk past.  Not to mention there’s not enough clean space away from the toilet to do it hygienically for a child who reaches out to touch things.  Yes!  Yuck!***

 

Right now, Ben is much more challenging to travel with as an all-boy toddler who is not inclined to be quiet, still, or patient unless sleeping! 

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By next year, Katie will probably no longer fit into a port-a-crib, so that may be the next travel challenge to overcome, even when we head up to the cabin.  I should initiate a blog discussion about disability-related travel challenges, to pick some clever and experienced brains I know are out there!

 

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The second day, the three children and I took off on a charming riverboat tour.

Sorry my cell phone photos can’t be edited; riverboat is way down there over the edge of the bridge~

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Katie loving the wind in her face~

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The boat was propelled by a huge, old-fashioned wood and steel paddle, churning and kicking up spray handsomely in its gleaming red paint.

Why isn’t Katie looking at the paddle wheel?

If there are strangers around, Katie is always completely focused on their proximity and whether they will come closer to her.  However, toward the end of the week, I began to notice a valuable side benefit to this trip I hadn’t anticipated.  I’ll tell you about it on the way home.

 

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Once we were alone again, Katie was completely taken by the water droplets, the nearly overpowering noise, and the mesmerizing motion of the wheel.

 

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Ben was chilly in the breeze, so he snuggled up to me and ended up napping through most of the tour.

 

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Hey, let’s test the floatie rings tonight past the children’s usual bedtimes!  

Must thoroughly wear them out so they sleep well and don’t wake too early in the morning!

(It worked beautifully.)

 

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Every time Katie grew over-excited about what she was doing, she would hyper-extend her arms and legs and pull her legs forward until she was touching her toes.

 

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She thought she was in heaven!

 

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We spent our last full day at a nice little zoo, where I hardly took any photos, mostly because I want my children to be in the photos, and most of the animals were too far away.  Katie enjoyed looking at all the people, though.

 

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Katie truly loves all animals when they are close enough to her to register in her consciousness.

Another expressive Katie-face~ 

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I got this photo after a few minutes of “Look, Katie, look!  GIRAFFES!  The giraffes are EATING!  LOOK at the giraffes EATING!  LOOK, Katie!”

One-half and one-quarter of two giraffes~ 

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And this expression means…

“Uuuuuuuhhhh…do I want to be up here?  I’m thinking…no.”

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As if a whole day at the zoo and a stop for supper at a local outdoor café wasn’t enough…

Well, they still had excessive amounts of energy to burn, and our little plan worked last night!

 

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Tonight, Katie began putting her feet out behind her and kicking when reminded.

 

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Swim, swim, Katie!

 

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What a girl!  I’m so proud of you!

 

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Aaaaahhhhh~

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Peter was an excellent helper.  Was right there when he was needed.  Didn’t complain once.  I’m so glad he traveled with us and so glad he had lots of time to play as well!

 

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I had to psyche Ben into trying the floatie by pumping up the enthusiasm and keeping my face right in front of his.  “See?  I’m right here, holding onto you!  It’s so FUN!”

 

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By the time we began our journey home, I could see a new awareness dawning in Katie.

I realized that most of her social experiences lately have been with people who know her, call her by name, and pay specific attention to her.  School…church…company…

During this trip, she experienced the opposite extreme–large numbers of people who passed by her, minding their own business without noticing her or acknowledging her attempts to charm them.

 

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On the flights home, she even noticeably toned down her reactions to the flight attendants leaning toward us with smiles to ask if we wanted something to drink.  It was so good to see her picking up some social cues and responding appropriately.

 

Impressive progress that she sat through fully half her meal in this chair before growing restless~

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So now we know.  Katie is a relative breeze to travel with, wheelchair and all!  She is such a good girl, she did fabulously well with the challenges we ran into, and having her with us made the trip more fun!

We’re so proud of you, sweet girl!

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Small P.S.  If you ask Verity how old she is, she will answer, “I’m five!”  We arrived home two weeks ago, on her birthday, but celebrated it a few days later.

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18 Responses to “Traveling with Katie”

  1. Jo Moseley says:

    Happy “5th” Birthday, Precious Verity! And, Good Job on the great trip, Katie!

  2. Deanna says:

    Love both of these girls, and boys! Peter is a good helper, and that Ben is such a little person! So fun.

  3. Maureen says:

    Sounds like a fabulous trip! :) Happy Birthday, Sweet Verity! <3

  4. Brandi says:

    Just a note to say – while people using the handicap accessible stalls may “look” ablebodied to you it doesn’t mean they are. Sometimes (before a diagnosis it was 80% of the time, now it’s about 10% of the time) I have to go to the bathroom and I have to do it RIGHT NOW. Waiting is not an option – even seconds can make a difference. So, if the only option is the handicap stall you bet I’m using it. Just because you can’t “see” a problem doesn’t mean it isn’t there. :)

  5. Susanna says:

    Oh, I completely understand this, Brandi. Thanks for bringing it up. This time it couldn’t have been the case, because she had to walk past a dozen empty stalls to get to the large one at the end. :) Maybe I should have included a note to stress that I didn’t feel angry and I gave her a gracious smile when she exited past us. I am sure that like the majority of human beings she was a good-natured person who, if she thought about it at all, was betting on the odds that nobody would come in right after her who genuinely needed that one stall. Maybe it came across as a strident remark because others assume I am fighting for our rights as moderns tend to approach these subjects. I don’t approach disability that way; I see it as a need-based discussion, not a rights-based one, and treat others as those who want to help if they just understand the difficulties that people with disabilities face. I debated including this small tidbit, knowing full well from experience that some might take exception to it just because it sounds accusatory or hard-edged, and decided to go ahead and write it, anyway, for the sake of awareness. Does this make sense?

  6. Julie R. says:

    I totally recognize that city scene and the paddleboat! You were in my town!! I wish I’d known, as I’d have loved to meet and help entertain you all! If you’re ever back in our “neck of the woods”, please consider emailing me in advance! I’ve been following your story since before you brought Katie home, so feel like we’re “friends” that just haven’t met yet! Blessings to you all! Julie

  7. Susanna says:

    Julie, we’ve been in your town several times now, and we plan to be there many more times, since that’s where Joe’s board meetings are typically held. We like your town! We liked that the city made an exception for the paddleboat in spite of closing the whole area due to flooding. We also liked the zoo, as it was the perfect size for our little group, and were tickled that it was offering free or by donation admission that day. :) I’ll email you about the next dates! Thank you so much for speaking up! I’d love to meet you!

  8. Amy says:

    AmyLynn(from MOMYS—I haven’t forgotten you!!;)) Loved reading this update on Katie!

  9. Mary says:

    Thank you for the wonderful update! LOVED reading ALL of the details!

  10. mannouhana says:

    Hi Susanna! You have done a fine job raising so many kids and they appear to be very well brought up with good manners. I’ve been reading your blog and is very impressed on how you took on the difficult task of bringing Katie home and nursing her back to health from her severly malnutrition state. I have been meaning to ask but not sure if it may come across in the wrong way. Does Katie get her BMI check? I know she was starved once but now she looks a bit on the overweight side to me. Did her therapist/dietician mention about her needing to lose some weight?

  11. Holly D. says:

    Love this. Love hearing how Katie became more desensitized toward strangers on this trip.

  12. Lucy says:

    Just a note to say that I think you are amazing. I traveled recently alone with my 9, 7, and 3 year old, all typically developing, and I was exhausted by the end. The two oldest are mostly independent, but just keeping up with a 3 year old boy! Yikes! Kudos Mama!

  13. Oh! Verity where has the time flown? Happy Birthday sweet girl!!
    I love the chubbiness on my boys too :o) Their chubby arms and fat little hands make us smile ever day!
    (((HUGS))) and prayers for you all from all of us!

  14. Susanna says:

    Mannouhana, this is a great question! I was wondering the same thing, and brought it up with her pediatrician and physical therapist. None are currently concerned, as she is getting more physically active now and also does the stretch out, fill out cycle with her growing pattern as our other kids do. She’s at the fill out stage. :) However, I’m keeping my eye on it and don’t urge her to finish every bite as I used to. That was a hard one for me to get over, as you can imagine. It took a mental switch on my part, especially since she’s such a great eater for me.

  15. Susanna says:

    Lucy, I had Joe for all of it but the two full days of meetings. I think *you* deserve kudos for going it alone!

  16. ElizabethG says:

    Safety sleeper! Hannah loves hers. It’s an indestructible, inescapable tent bed that comes with a twin sized air mattress. At home we use a regular mattress. It sets up and takes down in about 10-15 minutes and comes with its own carrying case. It can be checked on most airlines for free as it is considered DME (durable medical equipmen.) there would be no keeping Hannah safe from herself without it, but now we can sleep at night and even travel! What a life changer! http://www.thesafetysleeper.com

  17. Susanna says:

    Thank you, Elizabeth! We’ll check it out!

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