No Nativity and an Update on Brushing

Carys dressed as an angel for her school nativity a couple of years back.
Carys dressed as an angel for her school nativity a couple of years back.

We have no nativity to attend this year. It is the first year in a decade that we have not attended a nativity. Our little Carys is now too grown up to be in a nativity. She will be ten years old in one week. How the time has flown! Double figures, and no nativity.

I loved watching Carys in her school nativity. She was usually dressed as an angel, sitting in her wheelchair, holding a shaker with bells on it. She would shake her bells throughout the play, totally oblivious to everything going on around her, except the songs; she adores music.

Seeing her on a stage, taking part… well, being included might be a more accurate description, lol… always gave me pause for thought; it made me see her differently, not as just my little girl, but a person with her own life, if not independence, making her own friendships and bonds, on her own terms. And it filled me with a flutter of mixed feelings; gladness, sadness, pride and probably others that were so intertwined and mangled, I couldn’t put words to them.

An update on the Willbargar Brushing and Compressions; we’ve been brushing for six weeks now. At the time it was introduced, I felt quite perturbed; why had no one ever suggested this for Carys before? Surely that is what having experts like OT’s in her life is for, to recognise what Carys’s requirements are and match them with treatments?

One week in, and I quickly realised that there was no way I could have committed to it in the past. I don’t know how receptive Carys would have been when she was younger, but believe it or not, it’s not just about her; it’s about the parents and caregivers, too.

Life was bitten into 90 minute segments. Although the actual technique only takes five or ten minutes to complete, there is all the organisation, the dressing and undressing etc that it involves. Which means that realistically you only have about 70/ 75 minutes till the next one.

That’s an hour and fifteen minutes. Just enough time to cook dinner. make a start on the ironing, make a start on the hoovering, make a start on most things and then abandon them halfway through, not enough time to do the food shopping, go out for lunch, or in fact do anything outside of the home.

This process is one that needs consistency and routine. If you don’t commit to it, it wont be effective. I suspect that half of the time it fails, it is because the adults providing this care are unable to commit to it. When you have work and other children, it is hard to stick to.

I admit that in the past, I wasn’t always in a happy headspace over Carys. I believe this would have been barrier enough. I would not have been able to commit to it. I know that. I also firmly believe that things happen in our lives when they need to.

There is no point in being aggrieved over the fact that no one suggested brushing to us five years ago. Carys may not have been ready for it; I was definitely not. I am so grateful that all the right circumstances are in place now; the right OT, my attitude and willingness, and a teacher at school who is equally willing and passionate about helping Carys to achieve her full potential.

Now we are entering Phase Two; the frequency has reduced to five brushings and compressions a day, but now we have something called a Sensory Diet to accompany them. This is nothing to do with food; it is a series of deep pressure sensory activities tailored to Carys’s needs and abilities, such as lateral swinging, deep massage, rocking, back pressing, being rolled tightly in a duvet etc. It takes no more than 15 minutes to carry out, and is fun to do, more like play than therapy, parent-child bonding time. We like doing it, and that makes it so much easier to stick to.

There will be other aspects to it in the near future; vibratory tools and exercises for desensitising Carys’s mouth, and the use of weighted vests and blankets. But for now, I won’t think of them.

If you are about to embark on this program, be warned that it takes a LOT of commitment from everyone involved, and it will change your life. Like me, you will become a slave to that alarm on your phone, how you will grow to hate that ring tone! But the rewards will transform your life!

Already, the results are good; Carys is more relaxed, even in situations outside of the home. She has become more curious, more willing to reach out and touch things. She allows me to wash her hair, without even a murmur… whoever would have believed that could happen? She is reacting with less sensitivity to touch, although she still wriggles and squeals when I brush the soles of her feet, but then, who wouldn’t? She doesn’t pull away when I kiss her face, and that’s nice. She opens her mouth for her toothbrush and allows me to brush, you have no idea the battles that used to cause! Carys has the strength of Hercules when she wants!

We have a long way to go, but we’re getting there.

44 thoughts on “No Nativity and an Update on Brushing

  1. I am so glad that the brushing therapy is so successful but sad you have to go through this arduous routine to make life better for Carys and your family. It seems inconceivable to me that life is so difficult and yet you write with such lightness and optimism. May you have a Merry Brushing Christmas!

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  2. This is marvellous news, Ali. I echo the voices of many others in that Cerys’ strength is coming from the wonderful loving mother she has. I know exactly how she feels when the soles of her feet are being brushed. They are my one weakness 🙂
    I would have loved to have seen Cerys in her Nativity Plays over the years. She looks so happy in her Angel costume and I can only imagine must have been having the time of her life.
    Keep up the great work you are doing. I know you will.
    Hugs to you both.
    xx

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  3. Ali, you deserve so much credit for all of your hard work and your commitment to helping Carys. It appears that Carys has the desire to learn and that she is working right along with you. I know you have spoken about writing a fictional book based on Carys’ life, but I think that her true story is so powerful and moving that it deserves to be told as a true story rather than as fiction. You and she are such an inspiration. Please remember to take time out for yourself so that you can rest and recharge. Otherwise you will be eventually be running on empty and have nothing left to give.

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  4. Happy early birthday to Carys! Wow, Ali, I’m so thrilled that there are results, that’s some incredible dedication. Is the hardest part over now? I hope you’ll soon be getting time to do more of the other things you need and want to do. It must be exciting as well as extremely exhausting. But the fact that Carys is less sensitive to her environment and being in contact with others is a real blessing and a gift, as much for you as it is for her.

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  5. Not just Carys with the strength of Hercules… she got that from somewhere you know and I have a suspicion I know where. I am so pleased that this is working so well. What good news, and such a special gift this close to christmas. I hate brushing my boys teeth, so I feel your pain. ❤ Lovely post.

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      1. Actually, it makes a lot of sense to me, but I’m struggling to find the words to explain why. Especially when a person has no language in which to speak of or make sense or a memory of an experience, it’s important to learn or relearn something kinesthetically/somatically, over and over and over again. And that can reverse automatic visceral responses, and help someone like Carys, and in different contexts in different ways, help other people as well. And yes I agree, Ali, your little girl has some astounding strength and perseverance and there is no doubt that she learned it from you. 🙂

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  6. I do love this post, Ali. Your road cannot have been easy, and yet you seem to travel it with such honesty and love. I’m pleased to hear your hard work is paying off for you and your lovely girl 🙂
    And I feel your pain at the ‘no Nativity’ – we are also the same, with the Nativity being deemed for the younger children, while the older children (including mine) are doing a carol service. It will be lovely I’m sure, I just really enjoyed the nativity.

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  7. You are getting there, and how! Oh Ali, you write so eloquently and honestly, you move me with it all because I know how it feels when what might seem like such a small victory is actually so huge and encouraging and yes, life-changing. I still miss attending nativity plays even though it’s been many years (my youngest is 23!!). A rite of passage, a new era begins for Carys and for you, one filled with hope and love. Have a wonderfully peaceful and joyful Christmas, and blessings galore for the new year and beyond. See you in 2016 🙂 xx

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  8. What a good mom you are. I hope your compassion and love radiates outwards touching the rest of the world. Good news on Carys and her response to the treatment. Take some time, somehow, to care for yourself. Hope you guys have a great holiday. Xo

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  9. It’s lovely to hear of the progress you are making with Team Carys. I like Jane’s idea of Carys as a Biker, with you sitting pillion bursting and massaging. Let’s hope the time fairies are kind to you this Christmas.

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  10. Fair play to you and the family Ali, it is a huge commitment as you say but my goodness what a wonderful bonus.. to be able to carry out daily tasks less stressfully for both you and Carys is an amazing step forward. Multiply those moments across the coming years and it will be time well spent in these earlier phases. And Carys looks amazing dressed as an angel and very appropriate costume. love and hugs

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    1. Absolutely Sally! Already it is making a difference. Last night she fell asleep with her face on my lap while I gave her a back massage. Every time I tried to stop she raised her head, then plopped it back in my lap as if to say ‘don’t stop!’… it was so funny, I think we went way beyond the required 15 minutes lol!

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  11. I cannot imagine how you are coping with the commitment in time alone, Ali, but if it has reduced the stress of hair and teeth for Carys…and you… then it has to be worth worth it 🙂 And ten! That’s wonderful 🙂

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    1. Well, there was never enough time to do everything before, Sue… now the writing has gone on hold for a while. I’m just managing to keep the blog going and keep up with the blogs I follow. For a little girl who was never supposed to have been born alive, reaching the age of 10 is quite a milestone! We have so much to be grateful for.

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    1. Thanks Graeme! Admitting ones shortcomings is OK, it’s how we learn and grow. I can see now that I am a very different person now to the one I was in the early days of our journey with Carys. Children teach us so much, dont they?

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    1. Thanks Craig! It has been difficult for me because I am so NOT a creature of routine! I had to set my alarm on my phone and drop everything to make sure I didn’t miss any. Thankfully the intensity is only short term. 😊

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