Thursday, May 5, 2016

Autism and Swimming; Confronting an Epidemic

As a parent of three kids 6 and under (one of them having autism), summer activities involving water have made me uncomfortable for years. Unless it was a splash pad or a pool with only a foot of water we pretty much just avoided it. Even in a few inches of water in the bathtub I would hover within arm’s reach and give constant reminders, “Don’t put your face by the water” or “No standing you could slip.” As we started to see how much our son with autism enjoyed the water we knew spending a summer avoiding pools and lakes was doing him a disservice. It was doing them all a disservice but with three of them and two of us we felt pretty limited. Compounding my fear of my autistic son drowning were the staggering statistics of how many in the autism community lose their lives to water. In 2012, the National Autism Association reported that accidental drowning accounted for 91% of the total U.S. deaths reported in children with an Autism Spectrum Disorder ages 14 and younger subsequent to wandering/elopement. With the many deaths in recent years due to drowning, I assume that percentage has only grown.

I knew we needed swim classes for all of the kids, but I also knew that finding someone to work with and be successful teaching a kiddo with autism would be difficult, if not impossible. We recently moved to the DC area and I heard about Sensory Swim, a program specifically for autistic and sensory challenged individuals. When I spoke on the phone with Andrew and Mary (Sensory Swim’s owners and founders) I asked about a million questions and tried to calm my nerves by understanding their methodology and safety measures. I found out they both had a background in special education and after seeing a demand and need for effective swim classes for our community had decided to apply their knowledge and skill sets to teach our kids how to swim.



We signed up and took the plunge. I watched as my typical son took typical swim lessons alongside our son with autism and was pleasantly surprised by how different Sensory Swim’s methods were from regular private instruction. They started in the deep end and let him get a feel for treading water. With only a few feet between the two of them they would propel him into the direction of the other so he could get the feel of moving forward without being able to touch the bottom. They didn’t try to explain to him how to hold his breath or how to kick his legs. They SHOWED him everything they expected him to do. And to keep him motivated and working each time they would lift him up high and spin him or make huge waves to make him laugh. He would get positive reinforcement every time he imitated what they showed him.

I watched my older son and realized none of the methods the typical swim school was using with him would have worked for our autistic kiddo. He would not have understood the demands put on him and he would have not had enough motivation or silliness to stay engaged. Seeing how hands on Sensory Swim was and how well he responded, a lot of my fear dissipated. And although I know we have a ways to go, seeing him put his head under water without anxiety and watching him know how to hold his breath now are BIG first steps. Watching him get about six feet now doggy paddling on his own, I am hopeful that the goal of him swimming and staying safe if he were to get in the water on his own is within reach.

Andrew with another student.


And as I have watched these successes and milestones and just how happy he is in the water, part of me is aching. We need more. We need access. We need every autistic child and adult in this country to have the chance to learn how to swim. So I sat down with Sensory Swim’s founders and talked to them about how we could make it a reality and what parents can do if they do not have access to a program designed for autistic, nonverbal, and/or sensory challenged kids.


“The most important thing we do is gain the child’s trust. We get that connection with them,” Andrew explained. “About seventy percent of our students have been instructed somewhere else before us and have this traumatic experience of being forced below water before they were ready. It takes a lot for us to undo that trauma.”

Although some organizations are pushing for funding for swimming lessons for autistic children Sensory Swim’s concern is that most of the money is going to swim schools not necessarily trained in how to handle or actually teach special needs kids. They recounted a number of conversations they have had with instructors at other swim schools in which they were shocked to discover the goal was never to get the child to learn how to swim. These programs admitted they do not know how to communicate to our kids to teach them so they just let them enjoy the water and learning to swim is rarely the outcome.

As the demand for Sensory Swim lessons increases, Andrew and Mary have continued traveling and teaching teachers their effective methods. They want more schools to be focused on actually teaching our kids how to swim. “We will tell swim schools and teachers and parents all of our methods all day long. It’s not a big secret. We would be happy if effective special need swim lessons were all over the country as long as they worked.” For now, Sensory Swim is only available in Maryland and Virginia and they travel to each location on different days of the week. They are looking into expanding and hiring on additional teachers, while ensuring safety, quality and effectiveness remain the highest priorities in their program.




Because not everyone has access to effective special needs swim lessons, I asked Mary how she felt was the best way to overcome the child’s fear and for tips on how parents can best teach their autistic children how to swim. She explained, “Whether you are the parent or the swim teacher you have to validate their fear and anxiety. It is real. Acknowledge that it is scary to go under water, but say we can do it together. You just have to make the whole thing a shared experience. Get down to their level in the pool and try to experience it as they are experiencing it.”

She also emphasized the importance of teaching all safety-focused things first. Teach them to get to the side of the pool no matter what their method looks like. At that point it doesn’t matter if they are using correct strokes or whether or not they have the correct form. Let them sit on your knee and reach and propel towards the wall, allowing for more distance each time as they are ready.

One of the biggest obstacles to our children learning how to swim is our own fear and anxiety about our kids’ safety around water. That anxiety often transfers to the child and their apprehension to get into the water can be that much harder to get past. If we never expose them to water in a controlled environment, they will be clueless as to the dangers of water and what to do if, God forbid, they ever wander off and come upon a body of water or a pool by themselves.

We as a community are seriously failing at keeping our kids safe from wandering deaths. The dangers of elopement will always be there for many of our families, but getting past our own water anxiety as parents and making a commitment to teach all of our kids to swim can eliminate one risk that is killing so many. 






12 comments:

  1. Swimming helps with motor skills and strength, but to prevent death you should be aware of sensory input and watch out for sensory death traps. Children with bad sensory issues may even find lifejackets comforting. It is good to have a plan for sensory problems, and be sure back flouting is automatic to overcome poor motor skills, relating to meltdown.

    ReplyDelete
  2. Thanks so much for sharing Mandy. I'm an Occupational Therapist and Sensory Swim Teacher in Australia and it was brilliant to hear from a parents perspective, and also to see there are other resources out there!

    Regards,
    Claire Maike

    ReplyDelete
  3. We do sensory work at the pond and brook some times takes a couple of summers before the trauma left by regular swim coaches is erased. This is fantastic work the link to this article is going straight to the local pool (where the trauma starts) THANK YOU THANK YOU THANK YOU !!!

    ReplyDelete
    Replies
    1. Thank you so much for passing it along! I am glad you found it helpful.

      Delete
  4. How can I find a program like this in my area? (Montvale, NJ)

    ReplyDelete
  5. How can I find a program like this in my area? (Montvale, NJ)

    ReplyDelete
    Replies
    1. Right now Sensory Swim is only in Maryland and Virginia. They do have a couple books out on methods parents can use to teach their children. If you can find private instruction with experience with special needs, it might be worth a shot. Just make sure to ask questions about their success rate actually teaching kids how to swim, what precautions they take to keep kids safe and how they plan to work around anxiety and other obstacles special needs kids face in the water. Good luck!

      Delete
  6. My 5 year old started swimming under a special needs coach in Austin,TX.
    The outcome was impressive, swimming helped him with more than motor skills he actually started speaking and became more social.
    And in addition to all that he became a good swimmer and now we don't worry about him being around pools.

    ReplyDelete
  7. I love this post! I too had this overwhelming fear of my son drowning and did everything possible to teach him to swim. All the effort on our part and on the instructors paid off with much success!! We did not have a sensory swim instructor/s but we were fortunate to have instructors who were willing to learn what they needed to do different so that our son could learn. It is quite a long story but the outcome is incredible. He is now on a traveling swim team competing in races and doing really well. His wall in his room is covered with ribbons but more importantly his confidence in himself has extended beyond the pool. I put him in swimming out of fear of drowning but it has turned into so much more than what I ever expected.

    ReplyDelete
  8. Thanks so much for the article. Where in Virginia is Sensory Swim available?

    ReplyDelete
    Replies
    1. Hi Jan. Right now they have Springfield and Chantilly locations in Virginia. And they can be reached at info@sensoryswim.com.

      Delete
  9. My 7 year old son swims with Special Olympics swim team in NL. Right now he's just doing the active start but is excelling very fast. He's always had a thing for water since he was a baby and we've come to find out its certainly his thing that he enjoys and follows instructions very well at. I just wish there was a program guide for our Province of Newfoundland Canada. Certainly going to check with our Local Autism Chapter regarding this for sure. There are so many kids that could benefit from this in our area.

    ReplyDelete

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...