We enrolled N in swimming lessons for the first time when N was 4. The community swimming program for special needs kids was called “Aquadapt”. As I saw it at the time, it was just another thing N could not do, reminding me that on a capability scale of 1-100, N was at 1. In time I realized those swimming lessons were mostly “aqua;” but not much “adapt”. Now, years later and looking back, I have a greater context for Aquadapt and other similar well-intended programs.

“Aquadapt” is a community “one-to-one” swimming lesson for which the participant’s family pays a premium. In our town I soon discovered that these spots were highly coveted and were quickly snapped up. The first time I tried, I was unable to register N for swimming lessons 2 seasons away, because I had waited until 2 weeks after registration opened. I was informed by the Town that I needed to register on-line, not just on the day registration opened, but at the precise time it opened, which was 8:00am. This would give me at least a possibility of securing an “Aquadapt” spot for my son. Of course the usual caveat applied: no guarantees!

OK, sigh, I got the math! It was Call of Duty + Mortal Combat = On-Line Registration. Armed and dangerous, I was ready for the next session, on the date and time that registration opened. When that moment arrived, I was there, at the computer, bright and early, fingers poised for the anticipated cyber-battle. I had already determined what sessions I could do. I had the necessary IDs and PASSWORDS. I knew the answers to the security questions. I had the Parks and Rec book beside me, with desired session codes highlighted. I had my credit card ready. I was ready for anything.

Wham! Bam! I got a spot! My second choice but who cares? I was not surprised to discover that some had managed to beat me to the punch. Anyway it did not matter, because N was “IN”.

It turns out that “Aquadapt” is nothing more than “normal-kid” swimming levels done one-to-one. It was AquaQuest 1, a basic introduction to swimming. Some of the requirements of this level, that I can recall: putting head under water, blowing bubbles, floating, jumping to the instructor, using a kick board, and arm movements for treading water.

While some moms around me were enjoying a break, I sat in the bleachers beside the pool, watching with great anxiety because my son was non-verbal and not yet toilet trained. I had to carefully watch for the cryptic signals of impending poop, to avoid the real possibility of an accident, one that could potentially result in a “fouling,” and closure of the pool. Thankfully there was no incident.

Our first session ended without success: N had failed Aquaquest 1. To be honest, I was surprised, I thought he had actually been successful, for I had seen him do all the things the level required at some time during the course. But that was not relevant. His instructor told me the reason he failed: he would not put his head under the water. “Wait” I cried, “he jumps off the side of the pool all the time, and he goes under!” I was told “that does not count – he does not put his head under the water when instructed to by the instructor.” My heart sank, for I knew that even if he understood the instruction, he almost certainly would not comply, because he would not see the purpose of the request. Why would any well meaning person ask another to put their head under water? Why would anyone in their right mind do that, when asked to?

We tried two other times with “Aquadapt” and after the third registration war and subsequent failure to pass Aquaquest 1, I had to re-evaluate.

What was important to me was that N learned enough swimming skills that if he fell into the water, he could get to the side. I realized that the community swim programs had different objectives. So, either I would teach him, or he would teach himself.

A few years later when N was about 7 years old, we took him on a family vacation where there was a heated swimming pool with a depth no greater than 5ft. Each and every, day for 2 weeks, we spent hours at the pool and N explored the water freely under our supervision. For the entire time, I encouraged him, I gradually let him take risks and try out the deep end. I modeled swimming, I cued him and when necessary, rescued him while staying calm. It was really important to me that I did not show fear, that he did not have fear, because fear could prevent him from reaching safety. And after 2 weeks N had figured out on his own how to swim. It was such a wonderful thing for me to watch! He had his quasi-back float, with sculling hands and fluttering feet. Then he had the special needs dog paddle with its “kick only when absolutely necessary” action. I was overjoyed! I do not care about the crawl, or the breast stroke, or the butterfly or backstroke! Or blowing bubbles or putting head under water on demand. My son can get to the side!

So what is the context of this story, that came to me after years and years of community integration programs? “Aquadapt” was not something my son failed at – it was Aquadapt that was the failure. While some were served, it failed the least among us. I now see that when developmental services are at the community level, and integration is the goal, those services will be aimed at the more numerous, higher functioning kids. For those few who are most disabled, services either won’t exist, or they will be ridiculously expensive.

Clearly part of the reason is due to rational economics: where there are a small number of individuals needing services, those services will be unprofitable, if inexpensive. Sadly, funding does not take into account the level of disability. But there is a more serious aspect to this problem: it is the knowledge gap, the community does not understand how to integrate those individuals whose experience of life is so very different. Nobody seems to realize, when we put kids like my son into programs for “normal” kids, they are being set up for failure. One to one – it does not matter, not for the more disabled ones. The more severely developmentally disabled individuals need modified goals and activities, goals and activities that are relevant to them. They need structure. And they need to be able to be successful, not on the community’s terms, but on their own terms.

This context comes from many experiences with community programming over the years. Not just swimming lessons – special preschool and daycare programs, various camps, early intervention classes, speech & language sessions, and so on. We have had some wonderful, kind, amazing people who have worked with and loved dearly our son N, in all these programs, and we are truly grateful for the terrific job they have done given the constraints they have faced. It is not their fault – this is a world about money and legal liability. As for N’s swimming lessons, I guess they were really my swimming lessons. I learned what it would take for me to keep my head above the water in my lifewithautistickid.