The Joy of Walking and Making Sense of the Senses

Sometimes, things happen in our lives that fill us with deep joy; we can feel it swelling and expanding within us until it is so great, we think we might just burst, because we can’t possibly contain it. Have you ever had that feeling?

But it carries on growing regardless, because it’s not something bound by our physical limitations; it exists within ourΒ  soul. And quite often its caused by the little things in life, not that lottery win, or a new car, or a designer handbag that cost more than a house.

It’s climbing a mountain, admiring a beautiful view, inhaling the fragrance of a beautiful flower, feeling the sun on your face, the impromptu hug from a child.

Two weekends ago, I had this feeling walking through the Burren. I tried to capture it in my pictures. I don’t know if I did, but it doesn’t really matter. My senses still remember.

My walking enabled me to be in the Burren, and my senses enabled me to experience it. And it was truly an unforgettable gift.

Imagine if you can’t walk. Imagine if your senses interpret everything around you all wrong. Your life is limited already by being immobile; just think for a moment how that would impact everything you do in your normal daily life.

You wake up. You need to go to the toilet for your morning pee, but you can’t get out of bed. You can’t drive to work. You can’t walk down to the park at lunchtime to eat your sandwich in the sun. You can’t get into the bank because there is a step. The lift is out of order in the department store, so you can’t shop. You can’t cross the road because the curb is too high. There’s only one disabled trolley at the supermarket, and it’s already in use, so you can only buy what you can fit on your lap. The Burren? Forget it!

Now imagine how it would be if your senses gave you all the wrong information. The sound of the shower is like a roaring waterfall. The chink of keys is like a church bell ringing in your head. The kiss of a loved one feels like the unbearable tickling of a feather. Someone stroking your hair feels like they’ve just yanked a handful out of your head. The gentle blowing of the breeze in your face feels like it’s stolen your breath away and you’re suffocating. The tiled floor feels like razor blades beneath your feet.

Imagine you’re taken out to dinner in a restaurant. Firstly, everything is unfamiliar, and that’s enough to feel like the carpet has been tugged from under you. The chair is strange and uncomfortable. You’re hungry, but you have to wait till someone brings your food, then it’s so hot it feels like flames swilling around your mouth. It’s too lumpy, and feels like trying to swallow rocks. There are too many people, too many strangers, and the swirling of their voices all around you sounds like the roaring of lions. The powerful smells of so many different foods feels like trying to inhale pungent soup and makes you gag. Then the waitress, who you don’t know, tries to touch your curls, because they’re so cute, and it feels like claws raking through your hair. And all this when it’s nearly your bed time. It’s overwhelming.

That’s what it has been like for Carys all her life, and I never fully understood. No one did. We just wanted to try and have a normal life and include her in everything. She reacted with tantrums and crying. What else could she do?

But what a difference a year makes. Especially when you have the right people in your life who understand, and can help you.

This time last year, Carys couldn’t walk. Look at her now. See the joy in her face? Imagine the joy in mine. I know you can hear it in my voice. Carys loves walking. It’s not easy for her, but she enjoys it and wants to do it. It will never be as natural for her as it is for you and I, she will never be able to spend a weekend hiking in the Burren, but when she gets on her feet, she pulls her hands free so she can go it alone. She stumbles often. She loses her balance. But she walks. And walking makes her smile.

Not only that, but she is practising walking bare-foot over lots of different textures. She likes walking on grass. She likes walking on sand. She doesn’t like tiles, she goes back onto tip toes then. She can walk up steps so long as she has a hand to hold, but not down them yet. She can walk up and down ramps, but struggles with uneven surfaces. Now, we are working on transitioning; that means getting up from the floor, and getting down safely. I have a feeling when she has mastered transitioning, we will see a huge leap in her confidence and ability… I’ll need eyes in the back of my head, lol!

Teaching Carys to walk has been hard enough. But the senses, how on earth do we retrain them? With a lot of hard work, dedication, determination, consistency, and some therapies that seem totally weird. It’s not about exposure, like you might expect. It’s about re-directing the sensory input into the right pathway so the brain can interpret it correctly. Not everyone is convinced it works. But it is working for Carys. She is like a different child. In a good way!

We started with the Wilbarger brushing and joint compressions. Every 90 minutes during Carys’s waking hours. After a couple of months, we dropped down to five times a day followed by 10 minutes of sensory activities, such as walking, lateral swinging in a cocoon swing, deep pressure massage, back presses, wrapping her tightly in a blanket.

A couple of months later, we started vibratory work. Carys has something called a Z-vibe. It’s a little vibrating tube, roughly the size of a pen, which you can add different textured ends to. We started introducing this to her hands and feet, eventually working closer to her head and face. Then we tried putting it in her mouth. Now she has a spoon which goes on the end, and eats her food with it. From her teacher; she refuses it from me!

The idea is that this desensitizes her mouth, and wakes up her taste-buds, her chewing, and her swallowing reflex. This is all about getting her to feed herself. We are a loooong way from achieving that goal yet, but she has already improved significantly.

The latest therapies involve bathing, which takes three people as it requires applying deep pressure massage to the head while trying to wash her hair. Carys is very protective of her head, and hates water going anywhere near her head. Also, her weighted vest just arrived, which she must wear for half hour intervals throughout the day.

It sounds like a lot of work, and it is, for Carys as well as me and her carers and teachers at school. Is it worth it? Definitely! Carys is much calmer, confident and more settled. She has far fewer tantrums. In fact, when she has a tantrum now, I sit her on my lap and hold her Β very very tightly, and she will stop within five minutes! It’s the deep pressure of being held so tightly which calms her. Previously, her tantrums could go on for hours.

You might think that this would spoil her, that she would throw a tantrum to get attention and cuddles. But it doesn’t seem to work like that. Carys gives and receives hugs and cuddles all day long, she knows how to get me to cuddle her, and the tantrums have lessened, not increased.

I can take her out to the shops, even to the hospital, and she is relaxed and not stressed. In fact, when we are out, she likes to hold my hand and walk about, instead of sit in the safety of her buggy.

In the past, Carys would only tolerate restaurants sitting on mine or Daddy’s knee (preferably Daddy’s), cuddling her soft familiar blanket for comfort, with her headphones on to block out all the noise, and a Peppa Pig DVD to focus on and distract her from all the activity and commotion. Sometimes, we would get disapproving looks; people like to see children interacting with their families around the dinner table, not glued to their phones or tablets. But these were Carys’s survival techniques.

We haven’t taken her out to dinner yet since we started this process… that’s planned for this weekend. So wish us luck!


NB: I don’t know for sure how all this feels to Carys, as she is non-verbal, and can’t tell me. I have based this on how I imagine it must feel having observed her reactions and beghaviours, and after having talked to her occupational therapist. 😊

36 Comments on “The Joy of Walking and Making Sense of the Senses

  1. What a truly inspiring post and video for parents eveywhere Ali. This was a heartwarming video. Kudos to a fantastic mom. ❀

    Liked by 1 person

    • Aw thank you Debby! Although I do my best, I always feel like it’s never enough. I think most moms probably feel like that, though. Hope all is good with you and your hubby. Xxx

      Liked by 1 person

      • I think we all feel like we can’t do enough sometimes when we’re helping others, whether sicked loved ones or children with special needs.
        Hub is doing so much better, always room for improvement, but always grateful for tender mercies. Thanks for asking. ❀

        Liked by 1 person

    • Aw thank you Debby! Although I do my best, I always feel like it’s never enough. I think most moms probably feel like that, though.

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  2. What a wonderful post, Ali. Watching Carys walk brought tears so I can only imagine how you must feel when you see her progress. Congratulations to Carys. Hugs to all.

    Liked by 1 person

    • Aw thank you, Michelle! She is an amazing little girl, and I have wept many tears over her for one reason or another since she was born. Its wonderful to see her progress, so that she can make the most of the life she’s been given. All I care about really is that she’s happy and loved and pain free. 😊

      Liked by 1 person

  3. What a wonderful post! I am so happy that the treatment is working for Carys. It must be such a tiring struggle for you and your family but what a reward. I was a nanny 35 years ago and discovered, by accident, about the calming nature of a very close hug. I still use it today with crying babies and people think I have magical powers. I am left with the vision of Carys thinking that a stroke on her curls might be a claw.

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  4. Clearly I’m well behind with my reading, so I’m guessing that the meal out has happened. Chances are she was better company that me and Geoffle were on Saturday.
    I have to make light of it, because it’s my natural defence mechanism. Sometimes I feel uncomfortable with tears, even if they are linked to great joy. If I had one, I’d take my hat off to you. And I’m not offering to remove anything else.

    Liked by 1 person

    • I’m a bit relieved about that last sentence! Haha! You and Geoffle were great company and I’m glad we got a chance to chat… or should that be, listen to Geoff? Lol! And don’t worry, you’re not the only one, I’m well behind with my blog reading too. Sigh.

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      • Only a bit relieved? Think you may be right about listening to Geoff – but it’s so entertaining. I guess now the Bash is out of the way, you can (in comparative terms) relax a little and catch up.

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  5. Oh Ali, this is wonderful! I got teary-eyed watching your video. I’m so excited for you and Carys! She is so, so very loved. How did it go at the restaurant over the weekend? Sending hugs to the both of you. πŸ™‚

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  6. Love this post, it’s so nice to hear about her progress and how far she has come ❀ sounds like you have all worked SOOOO hard and what an amazing outcome ❀

    Liked by 1 person

  7. So elated for you, Ali, at Cary’s toddling steps towards surefooted-ness, nurtured in your love and care. My prayers and well wishes are with you and your spouse. May there be steadily happier days ahead.

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  8. Your empathy for your little girl is astounding. Everyone responds to love. The progress is positive and I wish you all the best. Sending hugs. ❀

    Liked by 1 person

  9. Wow. A lot of work but what wonderful progress and so worth it. Life sounds like it’s getting better for Carys and the whole family as you all figure this out together – so much excitement ahead as her skills and confidence grows. And you are 100% right that meeting a child’s needs is not spoiling, it’s love. ❀

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  10. Reblogged this on Kate McClelland and commented:
    Wow. What great progress Carys has made! She must love the freedom of getting around on her own two legs. what a triumph! I know you don’t like to be raised, but by heck woman you and your family put a lot of work in day in day out and Carys’ successful development is down to all of you working together with her and for her. Congratulations. Hope the dinner out goes really well for you xx

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  11. You need to attach tissues to a post like this one. She has the winningest smile doesn’t she? So glad there are steps,of progress to celebrate and here’s hoping the meal goes well.

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  12. We can hear the pride and joy in your words, Ali. Well done, Carys. Indeed. ❀️ A joyful tear for you and your family. There’s nothing left to say.

    Like

  13. Oh Ali, it is all about the little things. What a beautiful post. And what a thought-provoking one too. It must be so hard to be able to experience those little things fully, or rather experience them in the “right” way, not a misinterpreted one. But wow, that video made me smile and I can only imagine your smile. One step at a time! I really hope the next outing goes well!

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  14. “It’s climbing a mountain, admiring a beautiful view, inhaling the fragrance of a beautiful flower, feeling the sun on your face, the impromptu hug from a child.” Priceless, Ali, and best of luck to you and Carys on this journey.

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  15. What a fabulous achievement for all of you. You must be overjoyed and I can see from the smile on Carys’s face, in your lovely video, how much it means to her. All that loving care and support has really paid off. Enjoy your meal out. xx

    Like

  16. I’m feeling very fragile this morning and your post and video have me in tears. Sending a huge boxfull of hugs all round and best wishes for this evening πŸ™‚

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  17. A lovely video, Ali πŸ™‚ And how well you describe what she was going through – it must be so wonderful to see all your (and her) hard work making such a difference to her life.

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  18. The progress that Carys has made is absolutely wonderful, Ali! I can only imagine your joy in seeing her calmer and happier. She is walking so well! I am sure Carys enjoys the freedom and sense of achievement that her new mobility gives her. Kudos to you especially – and your team of professionals – for all of your hard work to help Carys achieve her full potential.

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