So, to quote the statistics that I have seen traveling around Facebook today: 48% of kids with autism wander (elope). Either 91% or 92% of those end in drownings. These are not numbers - they are souls...
As I have mentioned in previous posts, I am a swim instructor. I am seeing more and more students with subtle and blatant special needs because I am not secretive about my child's special needs. I understand that my "expertise" is based on my Red Cross Water Safety Instructor training, my parenting insights, and my years of teaching experience. My degree is in American History (just to be clear - I am NOT claiming more training than that). I understand that my experience is inherently limited by the individuals I have had the opportunity to teach and learn from and may not be a numerically significant data sample. I also understand that I work hard to interface with parents and be observant, and I am seeing changed behaviors and hearing parents that see skills improvement in their children after I teach them. I am convinced I am doing something right and something important.
One local Autism support group (local to me) asked if there were any swim lessons specifically for special needs children, to which there is not yet any affirmative response. As a parent of a "special needs" kids, my research has only ever uncovered private lessons (at least around me). The complaints have always been that they are cost prohibitive (as most therapies and supports are since they are either not "educationally necessary", or not covered by insurance because they are "unproven") or that it is difficult to keep a consistent instructor.
I STAND IN A PLACE OF KNOWLEDGE AND FEEL COMPELLED TO ACT! The loss of 3 children in one week is heart wrenching. The reaction of "mainstream" media is accusatory and misleading. Not only does the public need to be educated about the realities of Autism, the "public" needs to be educated about how it plays a supporting role in safety!! AND AUTISM PARENTS NEED TO BE ARMED WITH THE KNOWLEDGE THEY NEED TO TEACH CHILDREN.
1) I am going to go directly to my supervisors tomorrow and discuss how to create/ start a "special needs" swim lesson. I am not convinced it will "make money" this year, but costs can also be measured in lives. I am honored to work at a 4-H center - to be associated with an EDUCATIONAL organization. I am convinced this is the right thing to do, and the right time to do it.
2) Adults AND children need to start having conversations about swimming and sensory experiences, and have access to that knowledge. Swimming can not be seen as a pursuit/ sport of the "middle class". Parents need to feel empowered to teach their child these life saving skills! The Red Cross originally established its water safety programming BECAUSE most drownings are preventable if people are knowledgeable! People need to have access to supervised swimming experiences so that they have the opportunity to learn and practice water safe behaviors. Look here for an earlier blog I wrote on the topic. There are LOTS of ways you, at home, your family, can address that draw to water, and the disorientation it brings.
3) Communities need to start taking responsibility for shared safety! Too often the parents of autistic children feel judged and accused - as if there is a direct correlation between some "epic parenting fail" and the child's "outrageous" behavior. As amazing as it may seem to some people - all human beings come equipped with minds, no matter their age, and don't need your permission to use it. The argument is often batted about that communities must pay taxes for schools because the entire community is responsible for taking care of it's children. That idea does NOT stop at the automatic deduction. I am counting on my community to keep my roads safe, to not set a fire to their yard, to stay home when sick... WE ALL SHARE RESPONSIBILITY FOR SAFETY! It truly "takes a village" - because not only does my child need to learn to respect the authority of other adults - my child DESERVES to have other definitions of adulthood besides me. I am not perfect, cannot be perfect. I sincerely hope that my child never feels compelled to carry my baggage, and I desperately hope that I can show my child enough examples of humanity/ adulthood that he/she actively CHOOSES the person they become. It IS the responsibility of ALL the adults in the Walmart parking lot to watch for running children, to (patiently) remind them that it is unsafe, honor the rules about stopping for pedestrians and using cross walks, and MODEL SAFE BEHAVIORS. It IS the responsibility of ALL adults to be aware of what is going on around them. As a lifeguard, I am supposed to watch people. It does not take long to see which kid on the playground goes with which adult, or to see that one is looking for the other. I am NOT violating a parent's rights if I ask a kid where their "assigned grown-up" is. I am NOT violating a parent's rights by stopping that toddler from dashing out the door. I am NOT violating a parent's rights if I remind a child how to use a piece of equipment safety.
Cuz, you know what? I am gonna need that help too. My kid is a bolter, a runner, and we have lost him before. And I DO need your help reminding him that he needs to stay with his assigned grown-up. I too have had the unjust call of "inadequate parent" thrust before me, and had to find the strength to stop that ignorance from compounding my guilt.
We have specific strategies that we use. They might work for others, or they might not. Cuz one kid with autism is just one kid with autism, and the resulting behaviors vary greatly. I'll list some ways I have tried to help myself and help him help himself, just in case they are helpful, This is as much a selfish effort to show I am trying hard enough as it is a hope to offer suggestion to any who need it. I am sure that families of all 3 children that died this week used similar strategies...
1) outrageous clothes. When they were little, I ALWAYS dressed them in red or florescent orange when we went out. Not only does that make them visible to me from across a room, it makes them memorable to anyone who glances at them. If they get away from me, people will be more apt to remember them, and for that exact reason, "bad guys" will be less likely to target them. When we went to NYC (ages 4 & 6), I literally put rolls and rolls of curly gift ribbon all over their head (hair ribbons) and bodies (backpacks, shoe laces, back of jackets). ridiculous? maybe, memorable? yes. We ALWAYS dress as dragons at the Rennaisance Festival -with LOTS of sparkly fabric. Twice we have lost him in the crowds as he meandered away to look at some interesting thing. The first year I heard a bystander tell a security guard, "yeah! we saw this kid.. the whole family is dressed like him!" The second time, as soon as we spoke to a performer/ staff member - they brought him to us, because we made SURE to show his "cool" costume to every performer we saw all day long. We made our selves an obvious presence. (this is really only useful if your kid will wear clothes - so for us it was only like 60% of the time until recently...)
2) over talking. This is an auditory processing thing, and eventually a self advocacy thing. Talking through EVERY SINGLE PROCESS, ALL THE TIME... I often find I am doing it pretty loudly too, so that other adults are aware of my expectations for his/ her behavior. And usually it makes it pretty clear that I, and my child, need that extra loving support. "I am asking you to keep your hand on the cart in the grocery store. Please look at the carts around you and try to stay on your side. Those people want to reach the shelves too." "You must hold my hand in the parking lot. I am taller than you, so cars can see me better." "The people who own the store may get very concerned that you are not careful with things we aren't buying. You may not touch it without asking" "I see this person is trying to read quietly, so can you please respect their space and play on the other side." "I would like you to stand away from the curb so that you do not fall into the street." It is pretty annoying, but effective... and you get used to it eventually. This ties into verbal count downs for us. I am standing at the end of the toy aisle, "when I get to 10, it will be time to move to the next row..."
3) front loading. Way explaining before doing anything. Being sure to "practice" every activity. Visit the dentist office before the appointment. Making a fast trip to the mall just to read the directory, and then going another time to see a store. Asking for permission to visit a space before an event to find all the bathrooms. Explaining what it should look like if I am being a good audience member. Explaining when it is time to listen (sit quietly) and when it is time to move around. And this ties into visual cues ("you have to stay on the green part of the rug") and schedules/ lists ("after the lights come back on there will be lots of clapping, and then you can get up from your seat") for us.
4)correcting with validation. That is REALLY hard when you are scared, but trying to understand what the kid was thinking, and show where the "disconnect" was in the decision making. We lost him last winter, and had to really work to explain why we would be worried, so could he please be more thoughtful - and ASK before he goes out? Once he heard dad say he was going to the grocery store. He came out of the bathroom and couldn't find daddy, so he left to go to the grocery store. We saw him outside, he came back in - and determined he didn't think to check the basement... I understand that autism means he thinks differently, but unless we all communicate our thoughts processes, respect each other's intelligence, then we all just wallow in fear.
5) observation. I have found that if I give him more room, he is more willing to push himself, so I spend lots of time actually just sitting back and watching him. I also trust the dog to be watching. Our dog has always alerted when the kids wander too far or a strange adult approaches them. I always felt bad, like I was wasting time, but it so pays off to just really watch them, and how they interact with their environment. I think all parents do that, I just think we get in the habit if doing it without consciousness - like a long car drive.
6) prayer. He still gets away from us - especially now that he is old enough to go to boy bathrooms. Ultimately - like every other autism parent - I am often just praying that his honed interest didn't distract him so much he is being unsafe...
But God's purposes, actions, do not always match ours. Loss is horrific. While I personally believe that everything happens for a reason, I also KNOW how hard it is to accept that, to not be angry with God. Especially when that loss is compounded by ridiculous close-minded misleading accusations.