For a child with autism, safety issues must be addressed at home, at school and in the community.
Children are dying - In the past few weeks, I've heard of at least three children with autism who have died because of their autism.
Two were able to get away from home, and were both found in or near ponds, having drowned. The third was the victim of a house fire.
Because of autism - I say that all three of these children died because of their autism, and I truly believe that. Because of their autism, safety issues like the importance of not running off, the danger of water, or what to do in a fire could not be easily addressed.
It was because of their autism that, in at least one of these cases, the child could not recognize their own name when it was called by one of the hundreds, perhaps thousands of volunteers out searching for them, making it that much harder for him to be found.
I'm guessing it was because of their autism that they didn't know how to swim or behave around water, and didn't know what to do in case of a fire.
I don't know how to make this right. Autism safety is almost ignored in the schools, and what is taught is not enough to protect these kids.
Autism Safety at School
The autism program Lucas attends used to have all of its classes physically located at one "center-based" school . This school site was built in part to be a Delaware Autism Program site, and it happens to have an indoor swimming pool right smack in the middle of it, with shower areas adjoining it.
The pool was put there to teach water safety, including swimming, to students with autism and other severe disabilities. Water skills are critical to autism safety here in Delaware, where waterways like this one are everywhere (this one is behind our home).
In addition to swimming lessons, the swimming pool area taught other important autism safety concepts:
Appropriate behavior around water - Students learned that they shouldn't run, shouldn't approach or enter the water without an adult's permission, etc.
Proper showering techniques - After their swimming and water safety lessons, students learned how to adjust the water temperature so it doesn't burn, how to enter and exit a shower properly, how to put the soap away so the next person doesn't slip on it, even how to hang up their towel.
Yet we parents had to fight, not only to have the pool renovated so it could continue to be used, but then to ensure that ALL students would be taught water safety.
You see, as the concept of "inclusion" moved students out of the center based site and into other local schools, the district decided that autism safety would no longer be a focus.
Why? - Why this battle needed to be fought I'll never understand. Why school districts around the country aren't attempting to contract with local YMCA's to teach water safety to their students with severe cognitive disabilities (especially students who have trouble recognizing danger) I'll never understand.
Why school principals and administrators are not the first ones screaming to school boards to help find the teaching methods and funding necessary to help these children understand things that WILL SAVE THEIR LIVES, I'll never understand.
I won't understand it because I have yet to see a school district that puts things like this before the football team, the talented and gifted programs, the band uniforms, etc. I know that those things are where a school can shine, but our children are losing their lives and they shouldn't be.
IEP goals - Autism safety starts with parents explaining to their child's teacher, principal and other educational staff that the IEP must include goals such as:
Learning their name - Helping a student to learn their name, and to answer to it, is a critical part of autism safety.
Stay with the group - We spent a year on an IEP goal of having Lucas stay with the group (first with his class, then with his family), because autism safety depends so much on a child not running off.
Autism Safety at Home
If you have a child with autism, safety measures will probably be in place a lot longer, though.
Cleaning products - Keep your cleaning products locked away (or in the locked garage), and PLEASE, turn down your water heater to prevent any chance of burns.
Freezers - If you own a freezer, keep it locked at all times, and store the key where your child cannot get to it.
Doors - Use door alarms or key locks on your doors to prevent your child from getting outside without your knowledge. BE SURE TO PUT YOUR KEYS OUT OF YOUR CHILD'S REACH!
Just in case - Consider using a Child Locator if there's a chance your child could get away, either at home or out in public.
Autism Safety in the Community
Fire and Police - As a parent, you can arrange to take your child to the fire and police stations.
This gives your child the opportunity to see a fireman in their turnout gear and a police car with its lights flashing BEFORE there's an emergency (autism safety depends on your child being as comfortable as possible with the situation and those involved).
It also gives you the chance to explain your child's autism to the people who would be involved in any emergency.
Neighbors - You can also talk to your neighbors about your child, and make them aware that if they ever see your child alone outside, they need to call you at once, follow the child, or implement any other ideas that work for your situation.
Autism Safety in an Emergency
Autism safety isn't just teaching your child about danger, it's also about making sure the proper authorities know about your child's autism in the event of an emergency.
Car sign - Someone wrote to us recently looking for a sticker they could put in their car window that would indicate that there might be an autistic person in it. They wanted it in case of a car accident, so that rescue personnel or police would be aware of the autistic person's condition.
Here's a highly visible Special Needs or Autism Car Sign that can be removed from the vehicle and taken to the hospital, so that all first responders and doctors have easy access to medical info, including diagnosis, allergies, meds, etc.
In addition - A State Trooper friend of ours suggested that, in addition to having the Special Needs Car Sign in our car window, we also put something in the glove box.
This experienced policeman explained that after an accident, police, fire and rescue personnel focus on the people in the car. While it's highly likely that police or paramedics would notice the bright yellow Car Sign, it's ALWAYS better to be safe than sorry.
In the glove box - The State Trooper pointed out that if the driver was unconscious, the police or fire department usually looked in the glove box for registration, and suggested we put something in there that would be easily found by first responders.
These ID cards have Lucas' medical information on them, including his condition, his doctor and the medicines he takes. Again, with autism, safety involves keeping people informed about the person's condition, medications, etc.
We know other families who have Velcro'd an ID card to their child's car seat (either a "child seat" or the actual seat in the car).
Always check - The moral of this story is: Always check with your local police or rescue squad to find out where they would look for information on or in your car in an emergency.
That way, you can put notification about your child's condition in the place it will most likely be found or seen. After all, what good is it if no one ever sees it?
When traveling - Bear in mind that what holds true at home may not hold true in other places. That's another reason we each carry ID for Lucas, in addition to having it in our cars.
His dad, brother & I carry a wallet ID card with us at all times, and Lucas himself wears a Medical Alert Tag on his belt loop every day (see the photo above). Once he started wearing it, his autism won't let him leave home without it!
We all hope to keep our loved ones with autism safe. The better prepared we are, the more likely we'll be to achieve that goal!
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