Walking Tall

Kelsey has been using her walker a lot lately.  I’m so happy that school did what I hoped it would do, in that sense (and in many others too).  I hoped she’d want to use the walker more often since she had the opportunity, space and routine to do it.  Nothing better than flat, empty linoleum to help you master your gait!

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Talking with her teacher through a communication notebook

Before she started school, she would use the walker once, maybe twice a day for 30 seconds to walk a couple paces in the kitchen.  Then, she’d get down on all fours since she is much more proficient and efficient at crawling! We’ve had the walker for about nine months and this was the case until school came into the picture. In the meantime, she also turned three years old.

Before I continue shall we look at the growth she made, physically, in just three months of school…

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Three months!!  March to June.  It’s truly amazing.  And I owe most of it to going to school.  The confidence, the practice, the weight-baring, the stimulation…you can see it oozing out of her from her head to her toes.

In addition to school, we’ve tried to use the walker as much as we can.  It takes a conscious effort and a fair amount of planning, patience and, as a friend said, a bit of a rock star quality to do so, but it’s so worth it…most days.  As with any three year old (I’m sure…I don’t speak from experience), sometimes you just need to pick them up or strap them in the stroller and go.  A three year old directing the show can go south quickly.

I started by making an effort to use the walker every Wednesday for speech.  Our therapy office is located in a pretty accessible building, even though it’s on the second floor.  And by the way, I thought I understood what accessible meant with Ben.  I did not.  A wheeled piece of equipment operated by a three year old with complex communication needs requires a whole other level of accessibility.  But, anyway…we can park in the handicap spot near the door, we walk through the push-button handicap doors (that close way too quickly if you ask me), and then stroll to ride the elevator up to the second floor.  The first couple of times were frustrating and hard with lots of stops to crawl (and maybe a few tears from me), but now, she’s a pro (ok, we’re both pros!). Here’s another look at a video of her walking at speech.

The next big challenge…and I was really proud of this one… was to take the walker to the Spring Fair at school.  I couldn’t get many pictures because my girl was on the MOVE.  Watch your toes and Achilles heel when she’s walking because she doesn’t stop for anything or anyone…again the communication piece with a new kid on the move would be very helpful…soon enough (I hope!).

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I was proud of this outing because it was to a very crowded place.  But I also knew it would be familiar and inside (at school on a rainy Saturday).  We had friends visiting from out of town and my bestie is a super-mom of three and a preschool teacher getting her PhD in special education.

Her older daughters could carry the walker from the front hallway to the gym and then to the cafeteria when Kelsey (or I) would need a break from the walking practice. This was all a great scenario for success.    I was so grateful to our friends and felt so empowered to keep trying after this event since it went so well.

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Celebrating the successful outing and friendship with our cute hubbies, wine and a sitter for all five kids!

After my confidence increased from more regular use and reports from Kelsey’s teachers as to how well she was navigating the school without much fatigue, we’ve been trying to use the walker more often.  While the school fair was awesome, most of the time it is Kelsey and me running here and there and I don’t often have three able-bodied people to help.

I follow another Mom Blogger whose daughter has spina bifida.  Her blog Ability Hacker has given me all kinds of ideas and bravado in regards to making Kelsey’s journey easier.  She posted about using hooks to carry her daughter’s walker on their stroller when both modes of travel were needed for an outing.  I was determined to figure this one out because then Kelsey and I could be alone and still high-functioning.  And we did it!  We took her walker to meet friends at an accessible playground (God Bless the mother who came up with these!).  I knew I’d need the stroller to get to the playground itself and for breaks.  It was another success!

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We’ve been regularly having Kelsey walk into church as well as some other typical outings that have gone well.  She only really seems to like to walk for a purpose and that’s why outings are good.  She is good with “Follow me! Come this way!  Turn here!” She doesn’t seem to use it much at home because, again, crawling is much more efficient, especially with steps everywhere you look.

We’ve purchased all-terrain wheels for her walker because she has strong desires to walk on grass and mulch and it’s quite tricky with the regular wheels. We went to a fun party yesterday at a farm and while Kelsey had a BLAST on the pony ride and hay ride, she couldn’t really fully participate because of the grassy, hilly, rocky terrain.  But we still had a wonderful time.  And P.S., this time a year ago I would have DIED to see the JOY Kelsey got out of the this birthday party.  It was awesome.

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So.  I feel quite proud of ourselves with how much we are making an effort to fit this awkward, atypical piece of armor into our lives.  I’ve talked before about my love/hate relationship to our armor.  Without it all, life would be so much worse, but I can’t help but feel the feels that one has when marching out into the judgey, normal world with a baby using a walker (not made by Fisher Price).

I can sum up people’s reaction to Kelsey walking like this.  33% of the people are in awe.  They smile.  They say she’s adorable.  They say “she’s doing so well with that.”  Leave it to a complete stranger and young mom at the playground to say one of my favorite comments, “You get ’em girlfriend!”

Another 33% pity us.  You can see it in their eyes.  I’m imagine the first 33% pity us to some extent too, but they hide it better with positivity and words.

And the other 33% ignore.  I’m sure a portion of this population truly are ignoring us and in their own world with their own struggles and agendas, but I’ve noticed many a person trying not to look.  Trying to look away.  Because it’s a hard thing to see.  Believe me…it’s very hard for us to see too, but it’s better than the alternative.

When Kelsey is walking, she is calm.  She is confident.  She is happy.  And she’s walking.  And I have to tell myself this almost daily.  The struggle between acceptance and depression is a constant pull.

Dave and I went to an Orioles game last weekend.  We were delighted to see a boy, probably Ben’s age, walking with his walker into Camden Yards.  The boy was thrilled.  The parents looked content.  Life was good.  And I was excited to see him and point him out to Dave.  To see someone like us.  And for about 30 seconds I only thought pride, and loved being able to relate to him.  And then I started to pity him and to pity ourselves.  It is so, so hard to be so, so different in this great big world.  But as another dear friend said (what would I do without my friends!?!), “you can chose to live in fear (of what might happen or what someone might say or do) or you can chose to live.”

That’s what we’ve always chosen to do.  Just because they “can’t” doesn’t mean they “shouldn’t.” Even though life is scary…from walking to climbing to riding and playing…they should get to try it all, fall, and get up again.  I’ve sure had to…