Walking On Sunshine!

September 23, 2011

We’ve had a very exciting few weeks!  At 3 years, 4 months and about 3 weeks, our Rachel has made the transition from crawler to walker.  It’s hard to describe how this has changed our lives.  I’ve had a couple of people jokingly say, “Oh, just wait, you’ll soon wish she wasn’t walking again!”  To which I chuckle, but secretly think to myself, “Um, no…. I will not wish that”.  I’m completely over the moon that she’s walking, as evidenced by this video we put together this week to express our joy at this new milestone.

For the past 2 years or so, people have been asking me if she’s walking yet. They’ve been giving me suggestions, asking if we’ve taken her to physio (Yes, we do take her to physio), and I even had one lady give us an illegal walker she picked up in the States, hoping it would help. (It did not.)   I’ve had a lot of time to think about what this milestone means.  Truly, it seems like the dividing line between “baby” and “child”.  It was even a momentous occasion in evolutionary history when humans stood and walked upright. I so get those anthropologists now because it was a pretty momentous occasion in our house when one small human stood and walked upright, that’s for sure!

I don’t like to speak of the inability to walk unfavourably because there are many children who walk using a walker or get around using a wheelchair, and if that was the way things were to turn out, so be it.  However, for the past two years or so, I feel like we’ve been in a period of limbo. We weren’t using any assistive devices, so she was just dragging herself around the ground commando-style, something which seemed to create looks of surprise and uncertainty in people we hadn’t met before. We were pretty sure the walking would happen– we just didn’t know when.  Rachel was one of the last of her peers who have Down syndrome to start to walk, but through it all I have gleaned a new appreciation for what an amazing feat it is when all the different variables come together to develop this skill. 

Last month, I overheard my son telling a friend, “My sister can’t walk because she has Down syndrome.”  But lots of kids with Down syndrome walk before their 2nd birthday, and according to one milestone chart I’ve seen, 20 months is the average age for children with DS to walk. 

So just why did it take Rachel so long?  Here’s what I’ve learned:

1. Low Muscle Tone

Low muscle tone is a distinct characteristic of people who have Down syndrome.  It’s a bit hard to explain (see here for a fairly simple explanation), but with infants, it means they seem “floppier” than other babies–almost like dolls.  Rachel’s tone is very low.  It took until she was over 2 to put any weight on her legs at all.  In contrast, other babies may put weight on their legs at several months of age. It’s taken a long time to build up that leg strength so that she can stand up and walk.

2. Motor Planning

Motor planning is the ability of your brain to tell your body what to do.  I have an aunt who has ALS (Lou Gehrig’s Disease), which affects the motor neurons and leaves patients with an inability to send messages to their limbs, and she felt that in watching Rachel try to take steps, it seemed very similar to what she has experienced.  Indeed, I have seen our daughter sit beside the fridge with her arms straight up in the air and clearly want to stand up, but have no idea what to do with her legs.  Many of the exercises we have done with her have focussed on putting her body through the motions of standing up or walking with the idea of creating a “memory” of the motion so that she will be able to do it herself at some point. 

3. Vestibular System

Our vestibular system, located in our inner ear, is responsible for balance and an ability to understand where we are in space.  I noticed early on that if Rachel was in a swing, if she was seated on an exercise ball, or even if I sat her up on the counter, she would become so distressed she would begin to cry.  An occupational therapist who assessed her at one point identified this as being an issue with her vestibular system. It’s very difficult for her to know where she is in space. As you can imagine, when she first started standing, she became very discombobulated and would get back down immediately.  If you have ever had your balance thrown off because of too much alcohol, for example, you might have an idea of what a child like Rachel might be experiencing.

4. Personality

Some kids are more cautious than others.  Mine are pretty cautious.  For the few weeks prior to Rachel becoming a true walker, I believe she physically could walk, but just chose not to.  Thankfully her confidence has grown and she is over that hurdle.

I kept telling people that when she walked, we would throw a party, and the time has come!  Next month we will be holding a Walking Party.  Because it’s pretty special walking hand-in-hand with your child.  And because this new-found freedom is making her so happy.  Her confidence is blooming, her strength is building, and her independence is growing.  To me that’s a perfect reason to celebrate, and at this point it really doesn’t matter how long it took to get here.

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{ 11 comments… read them below or add one }

Gail McCracken September 23, 2011 at 11:48 am

Exciting news. Congratulations Rachel now a whole new world will open up for you and what a great video. Enjoy Heather and keep posting on how the walking goes.

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Heather September 23, 2011 at 11:53 am

Thanks Gail! I know you understand what it’s like!!!

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Gail McCracken September 26, 2011 at 1:42 pm

Yeah I do… Alex was about 3 and one half when he walked. I believe he too has very low tone.

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Marie Dunn September 23, 2011 at 2:50 pm

I love your explanations. I particularly learned about the vestibular system. That makes so much sense. Congratulations, Rachie! You’re our girl!

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Heather September 23, 2011 at 3:18 pm

Thanks Marie… it occurred to me some people might wonder why kids don’t walk until later – or think it’s just about “Down syndrome”, but really there are so many factors!

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Sarah September 25, 2011 at 2:33 pm

Congratulations to Rachel!!! Crawling to walking to soccer!! There is no telling where this beautiful girl will go! Loved the video too. Such a monemental and happy milestone captured perfectly.

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Heather September 25, 2011 at 3:12 pm

Thanks Sarah! ;)

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stephanie duncan February 27, 2012 at 9:15 pm

This is soo exciting to read.. I am surfing the web TRYING to find SOMEONE else with a child whos is over 3 with Down Syndrome that ISN’t walking!! this gives me great hope and inspiration.. THANKS for sharing.

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Heather February 27, 2012 at 9:18 pm

It’ll be a wonderful day when it happens! Not sure if you saw my post about having a Walking Party, but it was such a celebration! Email me if you want to chat about it. Thanks so much for your comment!

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Sara March 19, 2013 at 3:56 pm

Thanks for the story! My little guy is almost 3 and still not walking well. It gives me hope!

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Heather March 20, 2013 at 2:34 pm

He will! It starts to feel like forever – and they get SO heavy to carry around. I heard a good tip about bringing overalls or coveralls wherever you go so you can put them down places. Let me know when the big day arrives!!!

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