Can't walk, can walk

Do you ever marvel at your ability to walk?  The way you lift up one foot and then the other and move smoothly forwards, without thinking about it, collapsing or falling over - well usually.  Most of us take this for granted, unless we are - or become - disabled.  More than anything else, walking gives us freedom.  To do what we want and go where we want, on our own and at our whim.   Not being able to walk makes you dependent, on people and technology.

Of all Smiley's problems, the one question that most people ask about is 'will she walk?"  And the answer is: yes she can!

She has always been able to walk, it's just that she needs help.  As a toddler I would hold her up and her little legs would do exactly what legs are supposed to do, except that she would fall if I let go as her knees would buckle.  There's no strength in those joints and her legs are not straight.  

I tried her in a baby walker.  She looked really cute, but could only stand in it.  Occupational therapists and physiotherapists tried out different equipment, most of it complicated and ugly.  Then one of them found this. 



It was one of the happiest days of my life when I finally saw Smiley walking and smiling, happy and free :D  I know I've used this photo before but it is just perfect.

You see, I am convinced that walking - even with help - is very very good for Smiley, physically, mentally and socially.  I know it helps to stop the constipation and I'm sure it has other medical benefits: because people are meant to walk.  Walking also makes her equal to other children, she's no longer the one in the chair who just watches and waits to be included.  This made a huge difference at the Rainbow Junior Arch Club where she used to toddle around the gym hall following the other children, laughing and smiling, and part of the gang.

In her walker she gets the chance to be mischievous, which the school has encouraged (under supervision obviously) by leaving the classroom door open to see what she will do and where she will go.  One Christmas she headed straight for the school Christmas Tree and was found giggling under the branches as she played with the shiny baubles.  She also delivers messages by walker at school - with a guiding hand as her steering can be a little suspect!

But about four years ago she started to grow... and grow... and grow.  She was wearing toddler clothes.  Now she needs adult sizes.  The growth spurt has resulted in physical changes too, including contractures and windsweeping and she struggles to manage many of the skills I helped her to develop: sitting unaided, crawling on her tummy, even rolling over.  She is also now too big for her walker.  A replacement has been trialled in school for the last number of months, but she no longer flies around the place.  At home she doesn't bother with the walker, and some weeks it felt pointless to drag it up to the Club.  Last week it took three of us to lift her out of the buggy and position her carefully into it and ready to go: And what happened?  She scrunched up her hands and her head hung down.  He shoulders hunched and her feet stayed still.  Was this the end of Smiley walking?  Well I don't give up easily and last Saturday I brought the walker again.  This time it was like I had a different child.  

And here is the proof of how much she loves it, with me encouraging her, *cringes at sound of own voice*.  This video is a few months old, but you get the idea:

video

So I guess I'll have to keep finding ways to make sure that Smiley can walk, even though she can't.

23 comments:

  1. She is a Smiley alright, as her smile is so beautiful...

    Blue Sky, I can't believe that you have posted on this topic today of all days... My own take on "walking is about to go up on blogger any minute now... How freaky is this?

    Unless it is a case of "great minds... etc..." ;-)

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  2. **awww** Her smile in that picture is so cute!! Smiley definitely suits her!! Good luck with the walker! I hope things keep getting easier for you guys.

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  3. Utterly beautiful,

    your blog always leaves me humbled and smiling

    she is gorgeous

    j

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  4. I can't watch the video at the moment, I'll look tomorrow when on my computer but Smiley is so lucky to have such a determined mum who keeps trying to improve her life and make her happy. So pleased for you both that Smiley enjoyed her walker last Saturday. X

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  5. I'm convinced as well - no surprise *wink* - "that walking - even with help - is very very good for Smiley [all], physically, mentally and socially". (Of course, you've seen my several posts on this topic - linked in my right column.)

    That IS a very attractive model - like none I've seen here.

    Your voice is delightful to this ol' Texan. And seeing Smiley walk warms this ol' therapist's heart. Thanks!
    Barbara

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  6. Such a gorgeous happy girlie. You make a great team! I love reading blogs that show the realities of our special kids with a twist of hope and ultimately positivity! Much love, rach x

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  7. I think we all need to see something like this, we take the small things for granted when others have to fight for every single step. What a girl and what a mum

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  8. I know that it is good for her! Jack used to have a walker but it now takes two to get him in so I can no longer use it. I have insisted on a standing frame though and they are now sourcing funding for it.

    This video brought tears to my eyes watching your beautiful girl.

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  9. I think that it's wonderful that the school encourages her in mischief!! i.e. leaving the door open..AND the fact that she snuck away to the Christmas tree! A girl after my own heart..:)

    Sometimes tenacity just is the way of being a mom! She looks joyful in the video- "smiley" really does do her justice.

    LOVE the accent-heehee..I know, you're thinking "what accent? You're the one with the accent!" perspective is everything..and yours is lovely. :)

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  10. Oh my gosh, she's beautiful!! And your voice is lovely!

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  11. @Nan P - it is of course 'great minds' ...

    @Marsupial Mama - thank you

    @northernmum - thanks for your really lovely comment x

    @Cherished by me - thank you for your support once again x

    @TherExtras - glad you approve :)

    @Rachel - thank you, it's great to be able to share our experiences x

    @TheMadHouse - thank you

    @lyndylou - standing frames are really good as well, I'd love one but there's no space left!

    @kathleen - I don't have an accent *sounds shocked*

    @Lizbeth - thank you and no it really isn't!

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  12. This is fabulous Blue Sky and wonderful to see Smiley so happy. It just has to be good therapy for her, providing all sorts of benefits. It must be good for you too to see her walk...even if she can't ;-)

    Good on you for persevering!

    Lovely post

    xx Jazzy

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  13. What an incredible story and the video was equally astounding. Thank you for sharing the video it certainly made me smile and warmed my heart!

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  14. Aw that's absolutely fabulous - thank you so much for sharing this. It's great to see her walking and, as always, smiling away true to her name :)

    Great post and, for the record, your voice is lovely - but I know what you mean I posted a video with my voice on it the other month and I was saying 'carrots' a lot in it (don't ask!) and it sounded AWFUL!

    x

    p.s. I'm absolutely loving the new look blog - it's fab! Sorry I've not been around here much this last week, I'm on blog catch-up again

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  15. @jazzygal - it is good for me too xx

    @Lora - glad you enjoyed the video

    @SAHMlovingit - thanks for the lovely comments and I'd say your voice sounds fine to everyone else too :) I'm not sure about the new look, sadly some of my favourite widgets no longer work, so expect another new look soon x

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  16. Oh my word (yes, I know I say this a lot!!). Your video gave me a HUGE lump in my throat. What a wonderful wonderful girl xx Great accent! :)

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  17. i think that the feeling of their feet on the ground must be magical for children who are wheelchair users. eilidh perches on the edge of the sofa just so she can feel the ground beneath her - the smile that she has is huge. i hope that smiley is still able to walk a little - she'll get a totally different perspective on the world. x

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    1. My big aim for Smiley for this year is to find a way for her to walk again now that she has grown out f that walker

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  18. I can totally see why being able to be mobile and up on her feet is such a good thing for her ;-)

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    1. It is for everyone actually - its not good to be in a wheelchair all the time

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  19. Where did you find that fabulous walker? My goddaughter is a little person and we're trying to find her one that could work for her. This one seems adjustable or perhaps the company can make a custom one? Please e-mail me any info at PrincessBecBec@yahoo.com instead of leaving a reply here.

    Thank you!
    Rebecca

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  20. @Rebecca - thanks for your comment and I really hope you find something xx

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