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.