Brushing’s not just for Teeth and Hair!

Carys on holiday 2013

Carys on holiday 2013

I bawled in public again on Friday. I don’t know why I can’t seem to keep my emotions in check these days. I had gone to Carys’s school to meet her new Occupational Therapist. Halfway through the session, and the tears started to fall.

“Why are you crying?” she asked, handing me a wad of tissues. I couldn’t really explain. It was a whole crazy confused bunch of things I had absolutely no ability to extract and define at that point. Having had time to think about it, it has become a little clearer.

As a result of that meeting, today we started the Wilbargar Therapressure and Compressions Protocol. It’s a pretty intensive treatment for Carys’s multiple sensory defensiveness. It involves performing a particular treatment every ninety minutes between waking and sleeping for the next three weeks, after which she will be re-assessed. If the treatment has been successful, we will hopefully then be able to reduce the frequency.

So what does it involve? Well, we have a special brush with which we have to brush Carys’s arms back, legs, hands and feet. It requires deep pressure. This is followed by compressions of the joints. All told, it only takes about five or ten minutes.

But how does this help? It’s kinda complicated. From my understanding, there are two basic pathways feeding information to the brain. One is just for general info, the other is for ‘flight or fight’. In children with sensory defensiveness, all the info they receive, even that which is harmless and benign, gets fed into the wrong pathway, the ‘flight or fight’ one. It’s sensory overload.

This is what got to me. Imagine walking all alone down a strange dark alley in the middle of the night. Every sound, every shadow feels like a threat. There’s no one to help you. It’s unfamiliar and terrifying. Your body is on high alert, anticipating that something bad will happen.

We’ve all been in a situation like that at some point in our lives. Can you remember how it felt? Imagine if that happened to you every day. If you lived your life in a constant state of high alert and fear.

You’d be exhausted. You’d be nervous. You might react inappropriately. You might lash out aggressively at a perceived threat. You might not be able to eat or sleep. You’d be distracted, anxious, emotional. And you’d be misunderstood.

Well, this is how it often feels to suffer from sensory defensiveness. We know this because, although Carys can’t talk, other children can, and have. And that is one of the reasons why I cried. Carys will be ten years old in a few weeks, and all this time I never realised how she was feeling.

It’s no wonder she never wanted to leave the safety and familiarity of her room; why she played up so badly last year on holiday; why we have had so many issues trying to take her out to restaurants and on family days out. And the more we tried to familiarise her with these places, the worse it got, not better.

As I sat there, listening to all this with tears and snot streaming down my face… yes, sadly, I’m not a pretty, film star style crybaby… I realised that what this woman was proposing could work for Carys.

When she was a baby, I had taken her to a baby-massage class which had significantly improved her defensiveness against touch, particularly around her chest, shoulders, neck and head. She still enjoys massage now. She enjoys Reiki, and she loves nothing more than a full on cuddle!

And then I felt hopeful, that no matter how intense, time consuming and temporarily debilitating it might be for me personally, here was something which might actually make a significant improvement to Carys’s life. My hopes and dreams for Carys had been renewed. And that was another reason why I cried.

How lucky we are!

I left feeling humbled and grateful for the events and people who had brought this young woman into our lives; grateful for her knowledge, and grateful for the research which had created this procedure in the first place.Β I’m also grateful for Carys’s teacher, who is willingly sharing in the burden of all of Carys’s care, from her education and development, to physio, and now this. And that was also why I cried.

You can read about the Wilbargar Therapressure Protocol here. You can read about sensory defensiveness hereΒ (Carys has most of them). Finally, you can read a really touching blog post by author and blogger Rachel Carrerra who describes what it feels like very movingly.

61 Comments on “Brushing’s not just for Teeth and Hair!

  1. Pingback: No Nativity and an Update on Brushing | aliisaacstoryteller

  2. I’m so sorry I couldn’t comment earlier, Ali, but I’ve emerged again so am here now. Your post brought tears to my eyes. I can’t imagine how awful it would be to be in constant fear of new environments as Carys must be. It broke my heart, too, and I’m not even her mom. You must be so relieved and hopeful and overwhelmed and unsure about hoping and, all of it, that there might be a solution, or at least a way to ease her agitation and averse experience. It’s amazing there are techniques out there that seem so powerful and in a way, simple, to help kids like Carys. It’s a lot of work for you, but I so hope it helps Carys to calm her responses of overwhelm to what she senses around her. Perhaps then she might even find a place for herself in stillness and learn to trust both the physical experience and the framework around what she senses as safe for her. Sending hugs to you and your beautiful, radiant little girl. πŸ™‚

    Liked by 1 person

    • Thank you lovely lady! I know. It seems too simple to work. And yet, on the inside, its very complex indeed. How do people even discover these things? I don’t know. It’s just so amazing. And yes, the hope is wildly gyrating right now, lol! I hope so much that this will help improve Carys’s life. So we’re giving it everything we’ve got for the next few weeks and then we’ll see. I’ll keep you posted. xxx

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  3. I don’t blame you for crying at all, Ali. I think it’s absolutely normal in a situation like this. I’d have been crying (and cuddling) with you. When it comes to those we so dearly love anything that helps will always give us a huge amount of emotion. Don’t forget to give Cerys a hug from me.

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  4. Oh Ali, It is so wonderful when we feel that weight lift, knowing that someone ‘out there’ is offering us hope for our child and has insight into their suffering that helps us understand what they are going through so much better. And not only that, but offers treatment to help and alleviate. How encouraging for you and your daughter to have this help, what a very great blessing. You are wonderfully inspiring mum Ali, I wish I could give you a huge hug right about now… ❀ xxx

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  5. Please let us know if this therapy has a positive effect. I can understand why you broke out crying – I did the same the day we learned my son was ADHD – we didn’t know what was wrong for so long, and couldn’t understand his behavior. Blessings on you and the family.

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    • Ah… it’s such a revelation, isn’t it? But that’s not why you cry. You cry because at last you know there is a reason, and that there is something you can do to help. having the diagnosis may not help or change or cure the condition, but it can still change your life. Love to you and yours, Noelle. xxx

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  6. It must be so awful to feel your daughter’s fear and be powerless to fix it as a mother. You are a truly inspiring person and mom Ali. As someone who once got stuck in a three month panic attack many years ago I still have powerful memories of it, and a terror of anything like that ever happening again. For a child it must be terrible to feel that and not be able to communicate it. Yours tears were well spent – now you know and know too that all your care and love is spot on. Kudos and much respect to you Ali. HUGS to you both. ❀

    Liked by 1 person

    • Thanks Jo, and hugs right back at you! My mother went through panic attacks and two nervous breakdowns when I was a young teen, so I know how awful it can be. I hope you were able to get the help and support you needed. I think I needed to release all the pressure which had built up. I don’t think I could have managed this new treatment effectively if I hadn’t. And so far its going well, but that is because my little girl is a positive little being by nature, so we are very lucky. xxx

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  7. Ali, I am so happy to hear that Carys is enjoying the brushing. That means that it will be a pleasurable experience for both of you. There have been such huge breakthroughs for Carys lately including her walking on her own and now learning to enjoy the sense of touch. These must be very emotional experiences for you so a good cry now and then seems only appropriate whether tears of joy or just an overflowing of emotion.

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  8. I think you’re perfectly entitled to a good cry. Nothing to be embarrassed about; it’s perfectly understandable. I’ve been crying at everyone lately. When all that emotion wants out it wants out. I hope you felt better afterwards.:) I really hope the therapy works for your little girl. It sounds like it could be really positive for her.

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  9. I wonder if it works for those on the autistic spectrum (I’ve not read the article and it may say) who as I understand it have a sensory overload. And Ali as for snot and snivels, well if you’ve got it, flaunt it! You never do know when the plug will be pulled and all comes flooding out. As with all the other commentators I’m keeping everything crossed…

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  10. You know Carys so well that you will ‘know’ if she is getting distressed with this new treatment and be able to reassure her. I can see why this might work although I have never heard of it. Did you feel better after crying – usually it relieves built up tension? Lots of love to you and Carys.

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    • She is actually enjoying it! She recognises the brush. I always show her first. She giggles when I do her hands and feet, and loves all the compressions. Its the oral stuff she hates, its much more difficult. Its only Day 2 but so far so good! 😊

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      • Excellent – I am so pleased that Carys is enjoying it. She will get used to even the oral stuff. We all enjoy being stroked or massaged from pussy cats to humans. πŸ™‚

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  11. The pressure you live under constantly Ali is a huge strain. Who cares if the dam breaks once in a while whether from frustration or relief. If this young lady is bringing knowledge that can help Carys then the burden on you will increase but hopefully the pressure will decrease. I look forward to happy revelations from you.
    xxx Massive Hugs xxx

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    • Thanks David! 😊 I wil keep you posted how it works out. Its only Day 2 but so far so good. I practice Reiki on myself almost every day which keeps me calm and fairly relaxed, so I’m grand! Just sometimes I get a bit unexpectedly caught out with the waterwoks! Big hugs back to you!

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      • NEVER feel silly and weak during or after shedding tears Ali.
        During WWI The French Soldiers cried openly without reservation WHILE they were fighting and under bombardment.
        The upshot was that they had significantly fewer instances of Shell Shock and Trauma than the British troops…
        The brave also have fears and tears, but carry on regardless.
        My next lesson will be …. πŸ˜€

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        • Really? That’s amazing. Our poor soldiers were probably desperately trying to keep a stiff upper lip. Yes I read a great quote (which of course I cant quite remember, or who said it) but basically it was along the lines of heroes have fears and doubts too but tbey keep going regardless, and thats probably very true.

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  12. Oh Ali, you had complete right to let it all out, especially given the hopeful treatment. I had never before heard of that brushing technique but it sounds like it could be a life-changer.

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  13. I don’t blame you for bawling. You’re pretty strung out yourself, you know! Isn’t it fantastic how people can know these things, like brushing? There must be some really dedicated souls around who devote their lives to understanding what is almost incomprehensible. You’re in good hands there πŸ™‚

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  14. A deceptively simple technique, by the looks of it. If that can help Carys feel more secure in an overwhelming world, then I can quite understand the tears, Ali. I don’t underestimate what it demands of you though… not that you’ll be counting that. Hugs x

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  15. You and Carys are the definition of heroism ~ the absolute fear and discomfort as you say of having such a feeling that “There’s no one to help you. It’s unfamiliar and terrifying. Your body is on high alert, anticipating that something bad will happen.” is simply heartbreaking.

    It is also heartwarming to see how you are responding to this, how the good news and happiness can come from those who understand (and can help). It will be great to see this ‘lucky victories’ continue and continue. Take care ~

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  16. What a terrifying situation! I’m so glad you found something that can potentially work for Carys. I will be holding you and your beautiful daughter in the light. What a beautiful world we live in, that we have the ability to diagnose and treat conditions such as these.

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    • Thank you Faythe! And you are so right about that, it is wonderful. A couple of generations ago, she (and my son) would probably not have survived. We are fortunate and grateful indeed!

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  17. Aww, Ali, I’m so glad you connected with that OT! I’ve actually heard of that brushing technique but only with autistic kids… I even know 3 little boys who are brushed regularly, and it’s done wonders. I wish you and that sweet Carys all the best! Please keep us posted with her progress! ❀ ❀ xoxoxo

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    • Thanks Rachel. The brushing has worked really well with some of the children with Carys’s syndrome, not so well with others. I believe though that if it is not followed exactly, it just wont work. You have to keep to the schedule and be persistent, and that brushing has to be firm. She’s enjoying it at the moment, so hopefully it will help her long term.

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