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 our 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 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. 😊