Safety: The Autism Parent’s Constant Concern

When considering which topic to cover next, it took about half a second to decide on SAFETY.  Yes, I deliberately typed that word in all caps.  It’s that important.  Amid the numerous concerns involved with autism, keeping your child safe is never far from your mind.  It is a constant; always there, always a source of stress and fear, and it can be crippling.  There are ways to battle this concern, though, to stay ahead of the dangers.  In this post, I will talk about the things we do in our family to keep Peter safe.

Peter has virtually no safety awareness, and very little instinct for self preservation.  This is a common symptom of autism.  I remember that when he was first sitting up on his own, Peter’s physical therapist tested his instincts.  She sat him up, then deliberately pushed him over to see if he would catch himself.  Most children that age do.  Peter didn’t.  She was prepared for this, of course, and caught him before his head hit the floor, but it was startling.

Over the years, every safety measure that most of us learn instinctively has had to be taught to Peter through repetitive behavioral programs.  Going up and down stairs without falling forwards or backwards.  Sitting on a bench without falling off.  Holding on to the ropes of a swing.  Balancing on a stool.  Even now, at age 8, he still struggles with these things.

Then there are even bigger concerns:

“Runner” Behavior

In public, when Peter is upset or frightened, he will simply bolt.  Into a crowded parking lot.  Into a street.  Into danger.  His little body just tells him to flee, and that’s what he does.  He is a “runner.”  You have to watch him like a hawk constantly.  When he was younger, we contained him in his stroller.  He soon became too big for standard strollers, though, and then the issue became a physical problem.  How would I lift him off the pavement if he decides to “flop”?  Could I catch him if he ran?  Though he has low muscle tone, he can run fast when he wants to.  He’s also very strong.  Now, at 90 pounds, it difficult to make him do something he doesn’t want to do.

I finally realized there had to be some sort of stroller for larger children with disabilities.  I poked around the Web, and – sure enough – there were several options!  Of course there were, but with one drawback.  The cost.  Strollers designed for larger special needs children are super expensive.  (And I’m talking about basic strollers for children who can sit upright.)  Despite the cost, however, Peter’s generous grandparents bought him a MacLaren Major Elite Transport Chair, which can accommodate up to 110 pounds.  The stroller has been a lifesaver.  We can now confidently take Peter basically anywhere without the fear that he might run into danger. Below is a photo of us shortly after we got the stroller, on our very first cruise (we could not have handled the cruise without it):

April - June 2016 307

(NOTE: I’ve learned that in some cases, private insurance or Medicaid will cover the cost of a special needs stroller.  However, it takes months and months, lots of paperwork, denials, appeals, etc.  It involves proving that the stroller is an item of Medical Necessity.  We did not even attempt this avenue of funding.  We had already been through that ordeal securing Medicaid funding for Peter’s “Talker,” and while that was finally successful, I was not prepared to go through that again!)

STOP Program – ABA Therapy

One of Peter’s ABA programs is called the “STOP” program.  Therapists are training him to immediately stop when a caregiver says “Stop!” loudly.  We’ve tried it several times and so far he complies!  However, we haven’t had a chance to test it when he is exhibiting “runner” behavior.  I imagine that when he is that flight mode, he won’t even hear the word.  But it’s a good program nevertheless.

Wandering

Just as many children with autism are prone to running, they are also prone to wandering.  As in, just leaving without warning.  One day, when Peter was about 6 years old, we left him in the care of a babysitter.  We can’t hire just any babysitter for obvious reasons.  It has to be someone who knows Peter and his behaviors and is able to handle him.  In this instance, his sitter was a former therapist so we thought things would be fine.  Well… not so much.  Though I admit it wasn’t the sitter’s fault.  To put it briefly, Peter escaped the house.  The sitter said she was in the living room and Peter was in the play room.  She said they were separated for only about five minutes.  When the doorbell rang, the sitter went to the front door and discovered it was already wide open, and there stood the neighbor on the front porch, holding Peter by the hand!  Apparently Peter had left the house, made his way next door into the neighbor’s garage, and let himself into their home.  Then proceeded to plop down on their sofa.  Luckily our neighbors are good friends and are aware of Peter’s issues, so they were not offended, just concerned.  Naturally.

A few weeks later, Peter and his Dad had just gotten home from the grocery story.  While his Dad unloaded the groceries, Peter was playing with a toy in the garage.  The next minute, he had vanished.  Peter’s Dad, in a panic, ran all the way around the house but couldn’t find him.  He noticed the neighbor’s garage was open (the same neighbors, by the way), so on a hunch he knocked on the door.  It was answered by our flustered friend who had just discovered Peter on their couch.  AGAIN!

While these incidents had happy endings, and we look back at them with a little chuckle, they are really nothing to laugh about.  I have nightmares thinking about what could have happened to Peter.

We immediately took action and put the following in place:

DOOR ALARMS:  We installed alarms on all our outside doors.  When a door is opened, a loud, annoying alarm sounds.  If Peter ever tries to escape again, we will hear the door opening.  The alarm is simple, installed with double-sided tape, but it’s effective:

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PERSONAL TRANSMITTER/TRACKING DEVICE:  After a bit of research, we discovered that our local Sheriff’s Department was a member of a national program called Project Lifesaver.  This amazing program provides “timely response to save lives and reduce potential injury for adults and children who wander due to Alzheimer’s, autism, and other related conditions or disorders.”  Basically the program provides transmitters that can be worn on the wrist or ankle.  If the person wearing the transmitter goes missing, the caregiver notifies their local Project Lifesaver Agency (in our case, the local Sheriff’s Department), and a trained emergency team responds to the area, using the individualized tracking signal to locate the missing person.

Project Lifesaver

This program is amazing!  Peter wears his “Tracker Jacker” (no relation to the ones on Hunger Games!) on his ankle always.  It can even be submerged in water, so it doesn’t have to removed at bath time.  Once a month, an officer from the Sheriff’s Department comes to our house to change the battery and to chat with us.  This allows the officers to get to know our family, to learn about Peter, and to become familiar with our location in case we ever need to use the system.  This brings an amazing amount of comfort to us!  I highly recommend asking your local law enforcement to participate in the program if they don’t already.

Water Safety

Peter loves the water.  At the beach, he will charge into the ocean and come up laughing if a wave knocks him down.  He will run towards a pool and jump in.  You can see his joy in the photos below:

The problem is, he doesn’t know how to swim.  The thought of him jumping in to a body of water unsupervised fills me with terror.  Because of this, we continue to enroll him in swim lessons and we will stick with it until he can swim.  For many children with autism, tt takes many, many lessons for the skill to “kick in.”  Peter can now float on his back, which is a start!  Check with your local swim center to see if they have special swim lessons for children with autism.  The National Autism Association has put together a list of YMCA Locations nationwide that offer Special Needs Swimming Instruction.  Check it out.

Indoor Hazards

The minute we think we have the house Peter-proofed is the minute he gets into trouble.  Climbing on furniture, chewing on DVD cases and wires, wrapping string tightly around a finger, crawling under his mattress.  He has done all of these things and more.  Once he flipped over the handle bar of his mini trampoline and had to be taken to the Emergency Room with a bruised neck.  This kid is a walking hazard!

To make things even more difficult, we’ve discovered that he is a Mini Houdini.  There is hardly a child safety lock out there that he can’t overcome.  Drawer and cabinet locks – forget it!  Oven locks?  Ha!  Refrigerator locks? An even bigger HA!  We’ve often said that Peter could be hired as a Tester at these companies that claim “child-proof” on their advertisements.  We have therefore had to come up with creative solutions in our house.  Here are some of the things that have worked:

Locks:

We use this lock on our pantry, and it’s the only one that has held up for years:

folding door lock

The lock slides along the top of the folding doors, keeping the hinges in place.  Thus far, Peter can’t reach the lock “handle.”

We have round door knobs, so our options were limited.  We’ve take to locking room doors from the inside and keeping straightened paper clips on the door jambs for the rest of us to get access.  We’ve used (below) these on closet doors, but we’ve had to use packing tape to keep the two pieces of the lock together, or else Peter will pull them apart:

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A few years ago we decided we needed a safe spot in the house where we could leave Peter for a few minutes if necessary.  We can’t watch him every second.  I mean, sometimes you have to use the bathroom, right?  His own bedroom was the logical “safe spot” so we child-proofed it as best we could.  Then I asked my wood-working father to rig Peter’s door for us:

He turned Peter’s bedroom door into a “barn door” so that the bottom can be locked, and the top third can swing open.  This way, we can lock Peter in his room and yet have the top still open so that we can hear him playing and peek in on him.  This has worked very well for us.

Car Travel

Two years ago, Peter learned to unlatch his seatbelt.  I was on the highway one afternoon, driving Peter home from school, when suddenly his head popped up right beside mine.  Scared me to death!  He had been secure in his booster seat but apparently discovered he could unclip his seat belt.  He was quite pleased with himself but, needless to say, I was a bit freaked out.  The solution: I found a couple of seatbelt locks on Amazon and tested them out.  The first one, the Angel Guard, worked for awhile but then the plastic cracked and it broke apart:

angel guard

We’ve had more success with this one, the Auto BeltLock:

You need a key or a coin to get the lock off, so we are good until Peter figures that out!

We’ve tried many other gadgets for indoor safety, including toilet locks, oven locks, fridge locks, etc.  Most were failures.  If you have a strong and determined child like Peter, you will likely have similar experiences.  It’s just a matter of trial and error until you find what works.

Conclusion

I know that this is a long post.  I also know that there are many, many more safety issues that need to be addressed when it comes to autism.  I hope, though, that some of our “outside-the-box” solutions are helpful to other families.

Check out the “Autism Safety Project” from Autism Speaks for more information on this topic.

 

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