Elopement: There is Nothing Romantic About It

Elopement, also known as wandering or bolting, is defined as slipping away or escaping.  For parents of children with autism prone to this behavior, it means living in a constant state of alert.  A state of fear.  It has been in the news more and more as of late as we are losing more and more of our little super heroes to it.  With all of the therapies we've been blessed to recieve, not once has anyone educated me on this not-so-commonly discussed side effect of autism.  Not once.  ...and I'm not alone.  Roughly half of parents say the same thing in regards to advisement and education on wandering.

A few mornings ago, my little spidermonkey came into my room and climbed into my bed, like he does every single morning.  Seems like he learned ages ago how to climb over his 39" gate system even though he's just a few inches taller than it is.  He had his brother's iPad and seemed quite content in his tent under my covers as I started the shower for us.  I started putting some stuff away under the counter in the bathroom as I waited for the water to warm up.  When I turned back around, he had left the room.  A split second after that, the doorbell rang.  I knew.  My heart stopped and I knew.  He'd gotten out.  ...but how?!?  Hadn't I secured everything? 

I had put "child-proof" safety covers on all of the door knobs leading outside.  Two of our deadbolts require several turns of the switch to open, so he stopped bothering with them.  ...but then there was the carport door.  An easy one-turn dead-bolt, but I had a safety cover on the door knob.  It wasn't enough.  In the blink of an eye, he went to that door, took the safey cover completely off and was out in the street.  Naked.  Someone driving by stopped and he ran back into the house.  I thank God for that.  I never stop wondering what will happen the next time he outsmarts my safety measures.

Children prone to elopement usually head for the deadliest of places once they've escaped, busy streets or bodies of water.  Many are also prone to shed their clothing during the course of their elopement event, such was the case of the 11-year-old autistic girl tasered by the Oregon State Police in June.  According to a recent article by David Crary of the Associated Press, there have been 60 deaths attributed to wandering in the last four years.  Of the deaths in recent years, about 91% of those are drowning fatalities and it is reported that most of the remaining individuals died after being struck by an automobile.  About half of children diagnosed with autism have the tendancy toward elopement.  This puts the number of children at risk currently at over 500,000 and rising.  The article also goes on to point out that those with the tendancy to wander usually have reduced speech capabilities and an inability to absorb lessons on safety and the consequences of danger.

Some parents resort to sleeping in their child's room in an effort to catch them before they are able to wander off at night.  It becomes a matter of literally never letting your child out of your sight.  For those dealing with this, every day includes a state of hypervigilance that can become exhausting.  Vacations are avoided, family get togethers are missed, all in attempt to keep their children safe.  We all have to cook, clean and shower sometime, constant monitoring is simply not humanly possible.  In addition, those with the tendancy to wander watch for the moment the smallest gap in supervision arrises and they spring into action.  So, what do we do? 

Below are some suggested ways of dealing with the dangers of elopement:

Preventative Measures

• Enroll your child in a swimming course to reduce their risk of drowning during and elopement episode.  The final lesson should include the child being fully clothed.
• Address elopement concerns in your child's IEP meetings.
• Use locks and alarms on all doors and windows.
• Use of visual cues such as a red STOP sign on exterior doors and windows.
• Give your child scheduled time with the source of his elopement attraction.(water play, swimming lessons)
• Be mindful of elopement triggers(for those that bolt AWAY from situations or things). 

Vacation and Family Gathering Safety

• Use a portable lock system while away on vacation or while visiting family or friends.
• Use temporary tattoos while on vacation to include emergency information.
• Always have one person in front and one behind your child when hiking or on family outings.
• Use the TAG system to ensure that your child is being watched during family functions.

Emergency Management Measures

• Use ID tags or bracelets and tracking devices for authorities to be able to quickly ID or track your child(where capabilities exist).
• Advise local law enforcement, rescue services, any of their caregivers and trusted neighbors of your child's tendancy to wander and his usual path.
• Develop a family emergency plan in case of an elopement event.
• As a Emergency Response Worker, ALWAYS search around water first!

*The products I've suggested are merely examples, a starting point to guide you in the right direction. Search the products available and find the ones that best fit your family's needs.


In my quest for answers and advice, I have found the following sites to be extremely helpful:

AWAARE Collaboration
Awaare is a site that provides helpful, downloadable checklist and tips as well as a listing of helpful services available in your area.

NAA Checklist
This is a detailed cheklist of steps you can take to help ensure the safety of your little superhero.

KennedyKrieger Institute
Includes some very interesting statistics regarding elopement.

The Bottom Line

If you're struggling with elopement issues with your superhero, you must understand two things:  you are human and they are very determined.  Statistically, you will face an elopement event regardless of how secure your home is or how vigilant you are.  This DOES NOT make you a bad parent.  Proactively notify your local emergency services.  In the event you need to call them, you can do so without fear of judgement if you've made them aware of the situation.  Do not let fear of judgement or pride stop you from immediately seeking help should elopement occur.  Above all, breathe.  Take a moment, take a breath, have a hot cup of tea and know that you're not alone.  There are many like you, myself included, who face the same fears and the same questions.  While proactive education regarding elopement has a long way to go, it looks like the information and resources are out there.  When you finish that tea, get out and spread the word.

At-a-Girl... Sometimes we need them.

So I was at Social Security on Thursday with the littles. I had some paperwork to submit and I, like a dodo, have misplaced my SS card. It's in a box, somewhere....maybe. I've kept up with my original one from birth, but the current one, I occasionally need, is just not turning up. So, while we were waiting to be seen, I was singing songs to my little spidermonkey like Eency Weency Spider and Wheels on the Bus and he was giggling. He was a little tense about being there and the interaction seemed to settle him and draw his attention.

 

It worked for a while, but then he started screeching....loudly. I kept noticing a lady diagonally in front of us glancing back at us from time to time. I started doing compressions on his arms and legs and he eventually settled down. That's when I politely blurted out to the lady that he wasn't misbehaving, he had autism and the crowded room was making him anxious. She put her hand on mine and squeezed it. She said, "...You didn't have to tell me, I already knew. I have a son with autism who is nine years old. I was just watching how good you are with him. I wish more people understood their children as well as you do." I wanted to cry, it was all I could do in that crowded room not to just break down and cry. 

 

Some days are harder than others. Sometimes it is a challenge to balance everyone's needs. Somedays all I need to hear is that I am getting SOMETHING right. We talked about different therapies, eating difficulties and her son's recent triumph of making AB honor roll for the first time. We talked about the blessings that come from seeing the world through their eyes. All through the conversation she'd grab my hand and smile. As she left, she stopped to tell me to be proud of myself and that it all pays off. ...and she's right, it does. Every single day, it pays off when he speaks to me, when he smiles at me and when he runs up and hugs me. 

 

I push so hard and the goals seem so very important and dire. This is his life I am shaping. Every. Single. Day. Hearing that I am getting it right from a seasoned veteran made me feel not so lost, not so completely overwhelmed. I keep a pretty good game face on, but honestly, I am continually asking myself, "Am I doing enough? Have I researched enough? Am I making the right decisions for him?" Child rearing itself is no cakewalk. There is no manual. I've constantly asked myself lately, "Is this enough?" I feel like God put she and I in that room together as a way of telling me to relax, breathe and that yes, I am enough. I CAN and WILL get him through this and he will have an amazing life.  Chances are, you need a at-a-girl or at-a-boy too.  We delve them out to our superheroes with every little victory.  We can sometimes forget the value of reinforcement on an adult level.   Have a cup of hot tea and breathe.  Remember how far you've come and be confident about how many more victories are to come. 

The Waiting Game

We are so lucky.  We are so very infinitely lucky.  My little spidermonkey's pediatrician asked the right questions, did the right assessments and we found out very early that there was a cause for concern.  He has had speech and CBRS(play) therapy since he was 18 months old.  Just from my limited knowledge of physiology and the human brain, I knew that the sooner we worked with him, the more favorable the outcome.  Just from a common sense standpoint, it is easy to see how quickly little ones adapt and learn versus older children.  What I am finding out now is that early intervention may be the key to whether or not autism truly is a lifelong diagnosis. 

An article published in the American Psychological Association suggests that catching autism in the toddler years can give therapists a chance to essentially rewire and reshape an autistic mind's tendencies.  It is like catching a ball mid-flight and setting it back on the right path.  Once the ball has gone too far, and the brain is no longer changing at the same rapid rate, the opportunity is missed...permanently.  Once a child is school-age, therapies change from moulding to one of adaptation.  What this means as a parent?  Have your child tested.  Period.  Do not make excuses, do not turn a blind eye, do not think that they will "catch up".  If you suspect that something isn't quite right, don't be ashamed or afraid to say something.  I am saying this because I have had several friends admit that they know mothers who are waiting on their children to "outgrow" signs of autism.  The American Academy of Pediatrics recommends that all 18 & 24 month old children be screened for autism.  Here are some common concerns to look for based on an average 18-24 month old child with autism:

• Does not respond to his/her name.
• Cannot explain what he/she wants.
• Has language skills or speech that is delayed.
• Doesn't follow directions.
• At times, seems to be deaf.
• Seems to hear sometimes, but not others.
• Doesn't point or wave bye-bye.
• Used to say a few words or babble, but now he/she doesn't.
• Throws intense or violent tantrums.
• Has odd movements or patterns.
• Is hyperactive, uncooperative, or oppositional.
• Doesn't know how to play with toys.
• Doesn't smile when smiled at.
• Has poor eye contact with others.
• Gets "stuck" on things over and over and can't move on to other things.
• Seems to prefer to play alone.
• Gets things for him/herself only.
• Seems to be in his/her own world.
• Seems to tune people out.
• Is not interested in other children.
• Walks on his/her toes.
• Shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants).
• Spends a lot of time lining things up or putting things in a certain order.

My little guy did not display all of these signs at 18 months.  Some signs did not show then showed up later on.  Some of these symptoms, he has overcome.  I nearly cried the day he began feeding me his Cheerios. He now has great eye contact and responds to his name.  His journey has been proof positive to me that, with continued hard work, I can...and will help him over come every single bullet point on this list that currently applies. 

Do not put off knowing.  I understand how scary it is, but having an accurate diagnosis is so very important and so very powerful in getting our little superheroes the help they need and deserve.  The waiting game is a losing choice no matter which way the ball falls.  Talk to your pediatrician about any concerns you might have.  Be brutally honest and accurate with yourself and your pediatrician when completing the M-CHAT autism screening.  If your child is neurotypical, you will have gained the relief of knowing.  If you've been blessed with a superhero, put on your matching cape.  It's time to get to work.

Just Hold Me Mommy...

Today was a rough one.  There were meltdowns galore, and he was in a love/hate relationship with Mommy all day long.  During the course of his last year of therapy, it has become apparent that my Little Spidermonkey has a SPD element(Sensory Processing Disorder) with his autism.  More specifically, he is hyposensative.  For him, this causes him not to process or "feel" pain in the way most of us do and he sometimes needs sensory input to subside or avoid meltdowns.  It also makes it hard for him to judge what is too rough when playing with others.  He hits when he plays...hard.  Through weeks of positive reinforcement of what "Okay patting and playing" is and saying "We don't hit" while holding his hands down to his side, I've finally gotten him to stop play hitting and banging his head on things.  When he's angry, he'll still pat, but nothing like the MMA smack down he was giving.  He's a big boy.  He's only two, but he's easily the size of an average four-year-old.  Getting a grip on his SPD was a matter of being the sooner the better. 

Sensory input for my little guy comes in the form of hugging and giving gentle, but firm compressions on his arms and legs.  As far as SPD goes, I feel fortunate. I have a child with autism who needs hugs, and I am a hugger. We are a perfectly paired duo.  If I catch his frustration soon enough, I can sometimes avoid a meltdown altogether by quickly applying this technique.  It gives him time out for his mind to catch up with his place in the room and his current activity.  It also allows him a mental time out to calm down and let go of building frustration.  SPD can affect children and adults in many different ways.  It can affect many different senses or just one.  For hypersensative individuals, sights, sounds or even light touch might overwhelm them.  Knowledge is power, but with a two and a half year old, even the best knowledge sometimes just is not enough to make every day a stellar day.  ...and that is okay. 

In our struggle to guide our superheroes through this spectrum adventure, we need to understand that we are human.  They are also(but don't tell the Spidermonkey I said that).  No one is perfect.  Despite our best efforts, there will be mortifying meltdowns while you're trying to use a public restroom and your sympathetic neurotypical infant will scream simply because her brother is.  People will look at you like you're killing them both.  Life happens that way sometimes.  Take a breath, muster a smile and love the moment with all your heart.  I can't promise that there is a magic recipe for spectrum toddler wrangling, but I can promise that the bad moments pass.  By the end of the night, my superhero was "rawr"ing at Lion King and issuing group hugs for everyone.  As for your superhero's supersized meltdowns, just remember, "This too shall pass".