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. 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 here (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.