Three years ago I worked in a specialist team supporting families raising children with autism and learning disabilities.
Our team was made up of professionals with a diverse mix of skills and experience, and children were referred to us if they had particularly challenging behaviour. We worked closely with the children and their families to try and understand why these behaviours might be happening and to find strategies that would help reduce them.
Many of the children I worked with processed information from their senses differently to most people. This could lead them to seek out particular sensations, or to react strongly against other ones. My work often involved collaborating closely with occupational therapists to identify any sensory difficulties, and then finding ways of managing these so the children were less overwhelmed, distressed or distracted by their environments. This, incidentally, is how I came to know about the weighted blankets I now use every night to help me sleep.
Weighted blankets, vests or belts are commonly used as part of ‘deep pressure’ therapy. Deep pressure involves applying pressure on different parts of the body. It acts on the proprioceptive system and can have a calming affect.
While I was working in the autism team I was contacted by a group of design students from the Royal College of Art who wanted to create something that would be a help to young people on the autistic spectrum. They were particularly interested in developing a device that used deep pressure. I shared a lot of my professional experiences with them and they went on to design an inflatable deep-pressure vest and jacket. What they created was very different from anything that already existed because it allowed the person wearing the vest to control and adjust the amount of pressure needed. It was also a lot more comfortable and stylish than anything that’d gone before.
This was several years ago, and since then this group of young designers have formed a company called Squease. I’ve been keeping an eye on their progress over the last few years as they’ve refined and developed the vest, and the jacket that goes with it, which they’re now selling to the public.
I’d been wondering if a Squease vest would help me to calm down after I’ve over-reacted to a feeling or situation but they’re expensive and I didn’t want to spend a large amount of money on a hunch. Although they haven’t been specifically designed with people with Tourettes in mind, some people with the condition are unusually sensitive to their surroundings.
When I feel overwhelmed, either by happiness, excitement, anger or frustration I often impulsively bite my hand or arm very hard. I then become distressed by what I’ve done and find it hard to calm down. I recognise this behaviour as being similar to that of some of the children I used to work with.
Strategies I learnt from Habit Reversal Therapy (HRT), which aims to replace a challenging tic with a less damaging action, have helped a little but they don’t eliminate the overpowering need I feel to make a physical response. I hoped that by using the Squease vest during these times I’d be able to redirect my thoughts and energy, have a physical sensation, and experience the calming benefits of deep pressure.
I found the idea of being able to control a sensation in my body very appealing, and when I was looking at the Squease website over Christmas, I discovered they offer a rental scheme that means you can try out a vest before you commit to buying one, so I decided to give it a go.
Yesterday a crisp white box arrived at the castle and inside, wrapped in bright pink tissue paper, was my vest. The reason I mention the box and the paper is that very often products related to disability aren’t given this sort of treatment. How a specific aid is presented rarely seems to get much attention. But it was important to me – I’d been waiting excitedly for it to arrive and attention to detail made the experience of receiving it feel special.
Inside the box was the lightweight vest. It’s evident that a great deal of thought has gone into its design. For example the zip-pull – when it’s done up – sits inside a soft cover which means it doesn’t dangle around or, in my case, injure my hand when I tic and hit my chest.
I tried it on immediately. The hand pump sits at the side of the vest, and it only takes a few moments to inflate it. I liked the physical act of pumping it up as well as the hug-like sensation you get when it’s fully inflated. It’s designed in such a way that you feel a close, firm pressure but the vest itself doesn’t bulk up, so you don’t end up with the body shape of a wrestler. I really enjoyed how it felt, although I imagine it wouldn’t be for everybody. I also liked the feeling and sound of the air escaping when I let it out. It reminded me I was feeling calmer.
So far this seems to be working well. When I lost my phone earlier on while I was wearing the Squease, I was able to test its effectiveness. I was really worried and could feel myself overreacting as I looked for the phone. So while I was searching I pumped up the vest. I didn’t bite myself and stayed more in control of my body than I’ve done before in similar situations. (It turned out Leftwing Idiot had accidently taken my phone home in his pocket.)
So I can put the vest to the test in situations where I’m guaranteed to overreact, I’m going to choose some scary and exciting films to watch later.
While it’s very comfortable and discreet I’m not sure whether I’ll want to wear it in all the situations where it might help – particularly at work. The trial vest doesn’t come with the jacket so I’ve been wearing it under my own clothes and I still feel a little self-conscious about this outside the castle.
I’m now at the point where I need to weigh up all the considerations and decide whether to buy and keep my Squeasewear, or return it. My feeling is that it would be a very valuable piece of equipment for me – if I can afford it so soon after Christmas!
For other adults or the parents of children with Tourettes who’re facing a similar dilemma about financing such a piece of equipment, the Tourettes Action Grant scheme may be worth considering. Other grant schemes for disabled children include: Cerebra Grant Scheme, and The Family Fund. There’s also Disability-grants, a website that gives a lot more information on grants for disabled people.
Good luck. And if you end up getting one, give yourself a squease from me.