Siobhan didn’t walk until she was three and a half. She used a walker for some time after she first walked. I remember that at first she would walk if I was touching her, and stop if I took my hand away. But she could walk. This was a wonderful thing and we appreciated it very much. Eventually she could walk on her own without a walker. Then we moved into a house with a nice backyard and she went exploring. She would spend hours in the yard. Eventually she learned to use the Picture Exchange Communication System and could communicate with us. One of the first things she asked for independently and unexpectedly was yard. It was unexpected because it was night and raining. Linda and I looked at each other. I began to protest but then I quickly got Siobhan’s raincoat on her while Linda ran around turning outdoor floodlights on, and we opened the door. Siobhan went out into the night and into the rain. Alone. Then she came back. And she was satisfied. And with that transaction we started building her trust and confidence in her own power to communicate. In the same way we are responsible for her communication needs we are also responsible for her physical needs.
We focus on what Siobhan can do and try to help her improve her skills. When we first sent her to school we met a creative adaptive physical education instructor. He was also focused on what Siobhan could do. He recommended swimming, and he was willing to get into the pool with her and begin to teach her to swim. As I write this I’m remembering so many things I’ve not thought about for a long time. Like the fact that we had to fight to get her into the school pool. There was the principal who told us that if Siobhan was allowed to use the pool and she had a bathroom accident in it that the school would charge us to drain the pool, clean it, and fill it again. Olympic athlete Michael Phelps admits that “we do pee in the pool” but we’d be liable for damages? It was a fact that no other student with disabilities was swimming. I wonder why?
Most of the adaptive physical education (APE) instructors we have met have significantly different views from ours on an appropriate APE program for Siobhan. In most versions of their program they have her in the pool one week out of every six. Even that version of “in the pool” is markedly different from what she is capable of doing. The students splash around in the shallow end. The other weeks it’s back to yoga walks on the track; no resistance training, no aerobic activity. In short, no exercise. Siobhan’s peers are showing the results of this approach.
Early on we also took Siobhan to Special Olympics swimming. The coaches had a good relationship with the high school swim coach who, together with the high school swim team, volunteered to help coach the participants. Here again, the approach was different than what Siobhan was capable of doing. What it amounted to was mostly swim team members giving rides to the special olympics participants who couldn’t swim on their own. It is very easy to introduce a dependency into any of Siobhan’s routines. If you give her a verbal command to turn around at the end of the lane, then she will wait for that command or worse, turn it into a game. We sometimes found volunteers who were willing to encourage Siobhan to swim on her own and to fade the physical and verbal prompting, but it was hit or miss. Eventually the high school swim coach was hired by a different school and there was no longer a cadre of young team members helping out at Special Olympics. It came down to Siobhan splashing around in the shallow end again. We stopped going.
Only when we hired a swim coach to come to the school five days a week did Siobhan start to make significant progress. We were very lucky to get some smart people to work with Siobhan’s abilities who devised great ways of improving her skills. If she wasn’t reaching out with her arms enough, they had her reach for a ball on each stroke. They taught her to wear a swim cap, then goggles, then swim fins, then swim gloves. Each refinement increased her abilities, gave her more resistance to overcome, trained her to swim on her own without waiting for physical or verbal cues. We introduced PECS methodology into the training regimen. We made the symbol icons waterproof. Only physical symbols will work in the water, her voice output device is not used for this. SLPs please take note: iPad not so good underwater. Soon she was asking for the kick board or the ball by herself. When she starts her session she asks for cap, goggles, gloves and fins with icons. Now we have a well-rounded program going full steam. Communication means self-determination, physical mastery of complicated routines means Siobhan is confident in the water. She is now swimming 10 – 15 laps and can safely get in and out of the pool on her own.
Where others see Siobhan’s limitations we see skills that we encourage her to develop. When the schools refused us permission to use their pools, we were persistent, we stood firm and insisted on it. When the lifeguard was skeptical of this unusual use of her pool, we were persistent. In time, Siobhan won her over, and now the lifeguard goes out of her way to help Siobhan achieve her goals.
Brave In The Attempt
This year, when the notice came about Special Olympics swimming, Linda took Siobhan to an 8 am Saturday practice, a supreme sacrifice when all Linda wants to do is sleep late. With her peers still splashing around in the shallow end, Siobhan got in the pool and swam laps. Yay, Siobhan! The Special Olympics coach says Siobhan is good enough to try out for the first step toward possibly participating in the games. In a few weeks Linda and I and Siobhan’s skilled companion dog Harriet will be there to cheer Siobhan as she competes. I do believe she will be brave in the attempt.
Conversation at: @Blacktelephone