The Politics of Walking

I discovered in a phone call yesterday that Carys’s potential to one day walk is not down to her physical development, or physiotherapy, or even budgets and funding, or lack thereof.

No. It’s down to politics.

You will no doubt be aware of the ongoing saga of the AFO’s. After several return visits for ‘re-assessment’ and further ‘fittings’, they still don’t fit; how her previous therapist suggested she should just bear the pain, or wear them for an hour a day, because it was better than nothing. Here we are, nearly a year later, and Carys still doesn’t have a pair of AFO’s which fit her.

Her physiotherapist, in that same phone call, informed me they (either the company which makes them, or the product itself, she wasn’t clear which, but ultimately it boils down to the same thing) were ‘shit’… her word, not mine, although I am inclined to agree with her.

And I have finally been pushed into reaching that point where I have lost all confidence in ‘the system’.

I believe the HSE has failed Carys, and I have allowed them to do it.

I could fight, and I applaud those who do, or I can put my energies into something more productive for Carys.  I have chosen the latter.

I have taken advice and guidance from someone who, in the few short weeks he has known Carys, has already made a difference.

Back to basics we go; Carys is double jointed at the hips, hence she has no strength and power there, and her body is all out of alignment. No wonder she can’t walk, or even stand without support. I had always wondered at her lack of balance. No one seemed to have any answers.

Now I know that we have to work on her core muscles for stability and balance. Her brain needs re-educating with regard to moving her body. We need to build strength. We have a looooong list of exercises.

It’s starting to work. She wants to walk. She tried to climb onto the sofa the other day, and on another occasion, I found her standing on top of her toybox. I nearly fainted… how the hell did she do that? She has never previously tried such things.

Forget the AFO’s. The problem was never her ankles, it is her hips. Six years she has worn those things, with not even a sniff of improvement. Imagine your foot being held rigidly at a 90 degree angle inside a thick heavy hard plastic casing from your toes to your knees… this is supposed to help a child who has never walked learn to walk? Not surprisingly, it hasn’t. If you don’t work a muscle, it wastes, right?

On Sunday, Carys was fitted with orthotics for her pronation. We put her on her feet, and immediately, she stood for 20 seconds all by herself, without a wobble, without holding onto anything or anyone. It was an amazing moment. She proceeded to walk up and down the shop quite happily, holding onto one hand. She then walked at short intervals around the shopping centre. Happy. Normally she hates shopping centres and crowds.

Forget the walker. She’s had it since she was three. She’s now nearly ten. She still can’t steer it, or do anything but walk in a straight line with it, at a painfully slow rate. If it catches on a wall or door frame, she’s stuck there, unless someone rescues her.

At home, we are using her Walkolong. It is a foam tube which wraps around her chest and fastens with two straps which the parent hold onto the ends of. It offers a little support, if she needs it. She walks all around the house. We no longer need to carry her from one room to the next. She chooses where she wants to go, at what pace, stops when something catches her interest, continues when she’s ready. A taste of independence. And she’s loving it.

So much so, that I suggested during my telephone conversation with Carys’s physiotherapist that I bring one into school for her to use there.

“I don’t know,” was her reply. “I’m not sure what the politics would be about that.”

I came off the phone incensed. I thought we were all working towards the same goal. I thought the important thing was Carys’s mobility, her independence, her enjoyment of life, her well being. Seems I was wrong about that.

I understand the need for safety. I wouldn’t expect anyone to compromise that. But its about time the HSE crawled out of the dark ages. Their politics will not help Carys, or any child, walk.

I will do whatever it takes to help my daughter achieve her full potential, whatever that turns out to be. And I feel hopeful again that one day, she may be able to walk a little.

Won’t that be something?

39 thoughts on “The Politics of Walking

  1. Ali, it is amazing to me that it took so long for someone to find out about Carys being double jointed (hypermobile) in her hips. Was it her new physiotherapist that finally discovered this? I am so happy that this has finally been discovered and that it is making a significant difference for Carys in her efforts to walk.

    If I understand correctly, it appears that Carys’ new physiotherapist is a man and her previous physiotherapist was a woman? Was it the previous physiotherapist (the one that suggested Carys should just bear the pain of the ill-fitting AFO’s) that also said that she was not sure what the politics would be about using Carys’ Walkalong at school?

    While I understand your anger about such a thoughtless comment, I am wondering if what she was trying to say was that she was concerned about rules and regulations governing what is allowed at school. I think that you should push for more answers about that.

    Go over her head and talk to the people in charge to see if there are any rules or regulations that prohibit the use of Carys’ Walkalong. If there are none, then you can make sure that it gets used. If there are rules and regulations that say they can’t use the Walkalong at school which are not based on sound reasoning, then you can challenge the system to get the rules changed. I am sure that many parents would support you in your efforts.

    Liked by 1 person

    1. Thanks Rachele. I am going with the walkolong into school on wed to meet her teacher, her physio and her OT. Hopefully Carys will demo it perfectly and convince them! 😊

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  2. You and Carys are both inspirational and downright amazing Ali…
    It never ceases to annoy me that in these days if rapid technical development, that the different developments are not integrated properly, or at all in some cases.
    3D printers can build artificial limbs that can be articulated, make parts for the International Space Station, even build skin graft and organ substitutes.
    So why not build a custom made or adjustable frame that supports a child or adult…
    The technology is already available and the costs are dropping fast.
    Keep following your own instincts Ali – from the time I’ve known you, you’ve help Carys achieve a better quality of life than all the ‘Specialists’ lumped together…

    Liked by 1 person

    1. Thanks Chris! I really appreciate your support! I want to make the right decisions for Carys, but not to be controlled by emotions… yeah technology is advancing so fast I dont think human thinking can keep up with its potential!

      Liked by 1 person

      1. I think you’re right there – we need to consolidate and examine how to join differing advances together – some scientists are doing this in medical fields and finding existing drugs made to tackle specific ailments are also beneficial for the treatment of others – only today it was announced that viagra is effective against malaria! – Seriously! 🙂

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          1. That’s what I thought but apparently it stops the malaria in its tracks 🙂
            Motorised exoskeletons to help paralyzed people to walk again are being made lighter, stronger and cheaper than ever before because of advances in materials…
            I get so excited when I see such 360 degree thinking, but there are still too few people doing this.

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  3. I hate politics, but despite the bad note, this post made my day. I know you’ve been waiting a long time for her to walk, and it seems like she has come a long way. I’m glad to hear that. Those little improvements in the lives of your loved ones always make the hard work and sacrifices worth it. Keeping your family in my thoughts.

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  4. Hi Ali!

    Wow, thanks for sharing that. I’m so sorry you have struggled so much. Though I don’t know your initial diagnosis, prognosis, it seems you keep trying to find a way.

    DON’T give up. Experts don’t know everything. Remember coffee is good for you, oh wait coffee is bad for you. That’s the simplicity of matters.

    Quickly, without details I’ll tell you a story. Our good friends with lots of money could search out all sorts of help for their sickly child. He was fed by tubes (IV’s & NG tubes), got infections, never ate real food for almost twenty years. Then, miraculously, he ate, didn’t get sick, got married, and has a kid. He was expected to die at an early age.

    MY ADVICE is go with your child and you the mom and put it to the school what if it was their child what would they want? Over here they integrate special needs to regular schools. I think that is good for everyone instead of isolating.

    Can you find a progressive school that would work with her? If she can stand on a toy box, she can do more. 🙂

    Liked by 2 people

    1. Her school is good, its the health department in charge of her care where the problems lie. Its great to hear such an inspirational story! Thank you for sharing that. I think its true that we should never accept anything at face value or we will just stagnate. That applies to many walks of life, not just special needs. Carys has made me challenge so much accepted knowledge. She has really opened my eyes!

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    1. Thanks Barb! Yes, its funny how the very people who set out to help children like Carys actually become the obstacles. Often, they are just the face of the machine, budgets and policy dictating their actions. But I think they become so blinkered by standard procedure they forget these kids are individual human beings, and sometimes they need to think outside the box and deliver a unique and individual plan instead of instantly dismissing it.

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  5. Sad that walking and politics fit into the same sentence. But it’s the same in the states. I read your blog daily and am so inspired by all you accomplish. Carys is a beautiful inspiration. I hope she will be able to walk in her own way without any political barriers.

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    1. Thats a lovely thing to say! Thank you. Although, I actually feel that I rarely actually accomplish anything, not completely, anyway. Its all such a messy uphill battle! Carys really is beautiful, inside and out, and being her mom has really taught me a lot, and puts many things in perspective. I realise that wanting her to walk is something I fixated on for many years. If she never walks, at tbe end of the day, it doesnt really matter, but if she does, what a wonderful extra dimension it will add to her rather limited life, and ours too, of course! And we will know that we tried everything we could for her. Thats important too!

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  6. Oh, Ail! This is a great, great night for me!! I look at this photographs, and I read your descriptions, and as an objective observer from across the ocean, there is only one conclusion I can make.

    Carys is walking!

    Now. Already. With these new tooks and a new confidence and purpose. There is no need to qualify and hestitate and wait to write those words, in my opinion. Carys is walking!!!

    To hell with the politics of it all. You have found somebody who in six hours gave her the right tools and you the right direction. They must see this and allow her to take it to school and prosper and live the life she deserves.

    Carys is walking, my dear friend Ali! Congratulations, Carys!! You go, baby girl. 🙂 Heartfelt congratulations to you and your husband and your other children, Ali. What a great, great night.

    Liked by 2 people

    1. Mark, your comments always make me feel so happy! If you believe in miracles, Carys walking must surely be one! Its funny, but when I watched these developments I felt hope renewed, and yet until that happened, I hadnt realised that I had given up hope that she would walk. Its wonderful to see. I will try and get some film of her walking and post it so you can see… I feel so excited! Having the right tools, the right knowledge and the RIGHT PEOPLE around you can make such a difference!

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  7. I am caught between joy and tears at seeing Carys make progress and gain some freedom and independence and utter rage at the (excuse me while I insert a string of choice and wholly impolite words) ‘system’.

    I know exactly where you are with this particular set of issues.. because it isn’t just one, is it? Nick finally gave up with the system whose politics allowed them to say his goal of walking again was unrealistic… every penny he now has is going into funding private rehab, where the politics can be paid for, and private orthotics…. and at nearly £1500 for one AFO, one insole and a knee support, that is not within everyone’s means. It isn’t witin his really. The limited criminal injuries compensation designed to help him throughout his life with severe disability will very soon be gone, after just six years of plugging the political orifice left wide open by the bloody system.

    On another note… did you know you can get hinged AFOs that supprt the foot and leg in the correct alignment but still allow proper heel strike and rolling foot motion? No, neither did we…

    Your Walkalong sounds very like a the ‘leading reins’ I rigged up for Nick in the early days with some pipe insulation foam tubing and heavy duty luggage straps.

    xxx

    Liked by 1 person

    1. Lol! A mother’s creativity knows no bounds! I’m sorry to hear the compensation has not lasted very long… but his choices have led to wonderful results. It was worth it for sure. If he had relied on the system, where would he be? There was talk of getting hinged AFO’s for Carys but that was decided against. All this kit is so expensive, but you cant put a price on freedom, independence and quality of life can you? Thank you for your lovely words!

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      1. Just so lovely to read of Carys’ achievements! 😀

        That’s Nick’s take on it… that and the simple fact that if he didn’t give it everything he’s got, succeed or not, he would always regret it.

        If he had relied on the systen I honestly doubt he would still be with us. They offered so little hope and the help was to get him to accept his level of disability rather than transcend it. That is the biggest place the system falls down, in my opinion, and while it may well be driven by the availablity of limited budgets and resources on a day to day basis, long term, surely, the economics say it is more cost effective to have independent individuals who can contribute to ‘the system’ than those who are left with no choice but to depend on it.

        (The small thunderstorm emanating from Bukinghamshire at present may not have anything to do with me… 😉 )

        Liked by 1 person

        1. I love that word ‘transcend’… thats exactly what he did. Is still doing. Pity the system is so limiting. Even in this day and age. I think all these people start out with such good intentions but become blinkered and overwhelmed. Its like looking without seeing…

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  8. That will be wonderful, Ali!!! And I feel that, with you as her mom, Carys is bound to reach that potential. Without having met her, and living here across the rather large pond, even I have the intuition that she’s capable of so much more. Insert your favorite four letter word, plus the word politics, with an exclamation mark, and that’s how I feel about that. In my not so humble opinion, the dark age politics which the physiotherapist mentioned is all about normalization and ableist nonsense, along with other issues that most likely are only rationales to hide the drive toward normalization, etc. For instance, everyone knows if you are deaf and want to talk, there’s this language called sign language which serves quite adequately. But until I believe the 1990’s, schools in the U.S. were discouraging sign language in favor of lip reading, as that would help hearing people feel more comfortable. Even teachers who were deaf themselves sometimes bought into this paradigm. In that case, hearing loss was not itself as an impairment also a disability: the disability was actually created in the name of social politics. I find Carys is facing something similar. I’d say fight it, at least in the case of Carys herself. My elementary school tried finding countless reasons to kick me out of school so they didn’t have to pay for any accommodations which a blind child might need. My parents had to fight at every individual education plan meeting they had, and it really got bitter sometimes. Distrust of the system is sadly extremely healthy. There should never be a question: what should we promote, someone’s dignity and independence and self-realization or the system’s small minded prejudiced conformist able-bodied ideas and ideals? Don’t let them convince you with nonsense about safety, either. I was blessed with the ability to advocate for myself as a kid, for what a child’s word is worth, but refused to buy into their claims that it was too dangerous to use the playground or walk around by myself. There was no rule against it, though they tried to tell me otherwise, and the safety claims were fallacious which were clear enough and even clearer with empirical experience. I know you won’t take no for an answer, I just wanted to share this kind of incidious thinking is everywhere. If possible, change attitudes. But if that can’t happen, insist on human rights. How absurd, and I am so sorry you have to face this at all. It’s heartbreaking actually, as well as obviously anger provoking. Give Carys a hug from me. She is such a beautiful girl and I am so ecstatic you figured out the main reason for her being off balance and how to help her along in regaining ability. I know you will both persevere and keep finding ways for Carys to get what she needs. You’re right, you’re on it, and you’re not alone! 🙂

    Liked by 1 person

    1. Thank you for your lovely comments Éilis… I can tell this is somethinv close to your heart. And its so amazing to hear it from your point of view as someone who has experienced such things. I am always trying to guess how it might be for Carys but its hard to be sure. You are right… by not fighting you are accepting the situation, and there will never be change. Sometimes, it all seems so backwards!

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  9. The HSE, politics, the government, it’s all so sickening and frustrating. Makes you want to form your own political party, no politicians, just people using common sense to make decisions. I hope it all works out for you.

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  10. Did you find out about the Walkolong yourself, or did the physio mention it? I’ll bet the initiative came from you. It’s incredible how these people in the so-called caring professions can appear so uncaring! You’d think they’d be over the moon to hear that Carys is getting somewhere using a different approach. You keep at it, Ali, at your time and Carys’s. You’ll get there. sounds like you’re really onto something.

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    1. Thanks Jane! Came across it doing an internet search for walking aids. Its working so well at home I got another one for school. Its so exciting watching these improvements! They may be small and slow, but theres no hurry…

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