Water has always been an attraction for me and a place where I have found sensory equilibrium. I can’t remember exactly how I discovered this – probably during one of my many baths as a young child. I would sit in the tub for as long as I could and interact with the water in so many ways: splashing around in the bubbles; getting all of my body covered in shaving cream, then submerging one limb at a time and watching the way it left my skin slick as the bath water dissolved it; sinking into the tub’s depth up to my chin so that my ear canals filled with water and shut out nearly all the sensory streams in my vicinity, leaving only my bodily noises to focus on. I was so intrigued by my heartbeat moving in tandem with my lungs which I would fill up to the fullest, then listen to the sound as I blew it out my nose. Baths were such a wonderful time to stim out, and I always felt more relaxed after.
You might naturally think the pool would be another great venue for a sensory seeker like me, and you wouldn’t be wrong! The problem was that I couldn’t swim, and this was keeping me from being able to enjoy the pool. I took years of swim lessons and didn’t progress much because I refused to put my face in the water. I wouldn’t go underwater on purpose, and when I had to, I couldn’t hold my breath and swallowed so much pool water it made my stomach hurt.
It wasn’t until I met Kyle, a swim instructor who was like Jack Black in the movies – just this high energy personality who would finish each lesson with three cannonballs in the deep end which created the biggest splash I’d ever seen anyone make with their body. I would do anything to see that man do his wild jumps into the seemingly bottomless deep end. That was my safety check – I trusted Kyle because he was willing to do something I asked him to do in exchange for him asking me to do something way outside my comfort zone. There was mutual respect in a way that I hadn’t experienced up to that point, and it motivated me to learn how to swim.
It may have taken me years to get to this point, but that’s the case with many of the things that I have struggled with – I’m a steady learner, after all. It’s always come down to meeting individuals who connected with me on a personal level where I made my biggest gains. They had the mentality that I was someone who not only needed their help and knowledge, but that I could get to know them in return and maybe form some kind of friendship based on shared interests. This was harder to do before I learned how to letterboard, obviously, but Kyle and I made it happen one cannonball at a time.
Other people formed similar friendships with me, and it was usually the folks who were playfully persistent in helping me reach a goal. It’s pretty logical, really, that such magical individuals can motivate what others consider hopeless cases, individuals who spring into my thoughts when I smell chlorine, hear death metal, or drive past my old school.
I mean to say that we all deserve such teachers, SLP’s, OT’s, counselors, case workers, and other helpers that are common in the disability community. However, it’s not shocking that they can be hard to find, and this is especially true for those of us who rely on personal support workers. Many are needed to help Oregon families stay above water, but there is such a lack of personal support workers that many families are stuck with increasingly slim pickings. It’s like a pool filled with families, and most are treading water, but a few are starting to sink. Some have even drowned, unable to stay afloat for so long.
It makes no sense to kid ourselves that the disability community is in a good place right now in terms of support services for families. We aren’t, and we need people to make the system more responsive to our needs, even if we don’t seem to be making progress.
There needs to be some effort made to make support workers a more attractive profession.
We need to fight for funding so that we don’t end up in group homes/care settings without any other option besides living at home with our parents.
We need more employment options for those of us with high support needs.
Most of all, we need more Kyles who see us as growing, deserving people with a lot to offer in return.