Special needs parenting

The ultimate goal – Walking. How we overcame the odds

Walking. It’s such a basic thing, One that most of us do without even thinking. Those first steps our children take, whether early or late its just expected to happen, and is always a joyus occasion! When Ella was diagnosed I was told She would never even crawl, and would never walk. Obviously this was a huge blow at the time, but as I learnt more, I realised with the right help it might be possible for Ella to be able to do something the ‘experts’ said she can’t – walking.  It was a huge goal I had for Ella from the very start, O’Neill knew might not happen, but I would do everything I could to help her.

So something that’s been a huge part of Ella’s progress is physical therapy, I knew from the start that it would be a challenge for Ella to walk, if she would at all, but I wanted to give her the best chance I could.

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Loves the ‘sitting practice’!

I got Ella into physio when she was just 6 months old, she was rolling at that point, but nothing else. It wasn’t too bad yet, they had special Velcro positioned to encourage her to sit up, and I would put toys out of her reach to encourage crawling. When she was 11 months old she sat unassisted for the first time, and the day before her first birthday she started pulling herself around in an awkward army crawl. It was all so exciting, physio was still fun at that point. Fun exercise, nothing painful, just lots of encouraging and play based therapy.

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The way Ella used to stand, weight all on the top of her foot, ankle bent.

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When Ella first started trying to stand at almost 2 years old she would always stand on the tops of her feet. It was so strange to see, I don’t really have any photos because I would have to stop her from standing like that as soon as I saw it. It was something that desperately needed to be corrected – This is when things got tough. Ella needed her ankles to be stretched so she could stand on her feet normally. If not, she could end up causing herself damage to her feet and legs. She went through months of casting, at first with solid casts, and eventually ones that we could velcro on and off. And She HATED them! 😔 She was supposed to wear them as much as possible, as well as overnight. I spent many sleepless nights rocking her all night so she could get some sleep, while she quietly cried in my arms

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I’d also have to make her stand in a standing frame to get her to put weight on her feet, she also hated that, I had to try and build up from 5 minutes to 20 minute blocks, I’d be singing and dancing and acting the fool in front of her, trying anything to distract her from how uncomfortable she was. I also did morning and night stretches of her feet and legs, I’ll never forget how she cried, something that I was doing, was causing my baby pain and it broke my heart.

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This was my first experience making Ella do something that was painful to her and I hated every moment of it. Trying to smile and sing and comfort a kid while you’re doing something that’s hurting them is honestly the worst feeling, she’d fall asleep in my arms and I would cry. I’d whisper in her ear how sorry I was, and how much I loved her.

But it paid off! Just after Ella turned 2 she’d started bearing weight on her feet (properly) and attempting steps! Her ankles (especially her left) were still really bent, so we looked into some supportive shoes to straighten them, Of course living where I do that meant travel, the orthics place is an hour’s drive away and it was a bit disapointing I couldn’t buy her any cute shoes, but it’s a small price to pay.

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Once we got the support Ella’s physio therapists instisted on Ella doing as much walking as possible. The street that I lived on at the time was 530 metres long and I had a goal that we would walk to the end. At first we just walked down the driveway to the letter box, then to the neighbours driveway, then the next one and so on. I swear the neighbours must have thought I was insane, excitedly singing and encouraging Ella to walk, blowing bubbles, bringing along stuffed toys, anything I could to encourage her to walk! And more often than not having to walk home carrying Ella under one arm, and carrying her walker in the other.

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Ella’s special support shoes

I’d take the walker almost everywhere we went too, supermarkets crashing into isles, to appointments, parks, the walker got thrown in the car even though most of the time Ella reverted to crawling, while I had to carry the damn thing, but I was determined to give her the opportunity to walk any time I could. When she was 3 years old, she made it to the end of the street and back!! I was so overjoyed!

We kept up with the walker until, At almost 4 years old, she took her first independent steps. She was still very wobbly, and still needed to hang on to a lot of things but it was amazing.

The hard work, the stress, the tears, the embarrassment all forgotten in that instant.

You would think that was it, but the journey never stops with Ella! From there we still had to work on standing independently. In true Ella style, she started walking before she could stand! 😂 She would take steps and just plonk on her butt when she stopped.

She still very much needed a stroller at this point, and the looks and comments I would get of other people was ridiculous. ‘she’s too old for a stroller’ they would say condescendingly. (Side note: If you take nothing else from this post, take this: never judge why a child is still in a pram or stroller. You don’t know the full story)

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When she was almost 6, in order to start school she needed a wheelchair. Even though she could walk, she couldn’t walk far, or keep up with the other kids. It was mainly for field trips and things like that and I’m ashamed to admit I found the whole process very confronting. It was hard seeing her sitting in a wheelchair but Ella loved it and as I got used to it I realised how much freedom her chair gave us! We could walk to the bus stop, to the shops, to the park! We did get some strange looks when I wheeled her to the park, and then she got out of the chair to play (again, people are judgmental shits) but all in all her chair was fantastic for us.

We also upgraded from her supportive shoes, to splints, which was so exciting!
It meant more trips to the orthopedics place, a trip for measuring, for fitting then reviews every couple of months, and with Ella growing so fast we had to get new ones often. I had to check over her feet each night to make sure there was no sore spots. But I was so excited to be able to put runners on her! It seems like such a small thing, and they still had to be runners (not sandles or cute girly shoes) but after only being able to wear one pair of shoes it was a big deal! I went out and got her Peppa pig runners that lit up! And some dinosaur shoes lol

 

 

 

Obviously there was 3 years of hard work during that time, tantrums of not wanting to wear the splints, still carrying her a lot, quite often she just wouldn’t walk!  She still needed a lot of support up stairs, ramps hills and fell over quite a bit (still does!)  There were countless trips to the othapedic surgeon in Melbourne (3 hour drive, 6 hour round trip) but it was all worth it, Ella being able to Walk is truly a game changer.

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Physio has started to be more fun for Ella now thankfully, working on jumping, rolling, stairs, hopping and all those big fun gross motor skills.  Getting her out and about, helping her to climb and use steps, walk up and down ramps, practice lots of balance activities.  So while our journey hasn’t ended, when I look back at all Ella has acheived, from sitting up, to those first steps with a walker, to walking, to jumping I can’t help but be so proud, and I can’t wait to see what Ella will acheive next!

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