Autism Awareness. Day 5 E is for Elopement

Day 5

E is for Elopement

“Check water first”. The most terrifying emergency directive a parent can hear….and this is the protocol for children with Autism who go missing. Elopement, wandering, bolting, fleeing. 48% of children with autism elope. Drowning is the leading cause of death in kids under 14 with Autism. We are lucky-A2 only gets distracted and wanders to find things that are interesting without regard to safety or whether a familiar adult is nearby–but he does not run from us–which prevents so many families from being able to go in public safely with their child. One of the things that makes A2’s non-elopement complicated as that he is not a risk…. until he is.  He can go a full year with staying in eye shot and then one day out of no where he will simply leave the house. With no warning. He also cannot tell anyone his first and last name with consistency or clarity.  He does not know his address or phone number despite years of practice.  He knows my full name, but unless you are a trained listener. you will not understand him.  We all know to approach a young child who appears to be lost, but most would not think to approach an older child or young adult. Be aware–this is one way we can all be a village to our families!

Unfortunately, there are limited ways to actually prevent elopement behaviors.  When we assume the function of behavior is escape we may be missing out on other factors.  Does he bolt and laugh while doing it as he watches you chase him (attention)?  Is he fascinated with streetlamps or water or heavy equipment and feels intense compulsion to go check it out (access or internal attenuation)?  Does he seem to leave only in specific situations or with specific people?  If you have a child that is a runner, consider tracking the behavior for antecedents and response or consequence (even when unintended), track the time of day and what was happening around him at the time.  Track WHAT the elopement looks like…does he run or is it more like walking away?  Does it change what it looks like based on the situation?  Besides lockdown and direct supervision, understanding your child’s behavior through data collection is your best preventative defense.

As far as what else you can do if your child is an elopement risk…again, limited but both high and low technology options can be lifesavers. If your county or police department have a special needs registry, register your child. There is a national initiative and grant called Project Lifesaver that your police department can utilize and get wristbands with gps or radio signal your child can wear. Keep an up to date photo of him on you at all times. Create a card he can carry with him with his information and use discrete trial training to teach him to hand it to someone if he cannot find you. Consider a cell phone and GPS tracking or the Find My iPhone App. There are tracking devices like http://www.angelsense.com available for a monthly fee. These attach to the inside of clothing.  Go online and search for other high and low tech options they are out there.

GPS tracking device reviews:  http://www.safewise.com

List of tracking, ID and safety products (not an exhaustive or all inclusive list): https://www.autismspeaks.org/family-services/resource-library/safety-products

It is easy not to move forward because we do not want to assume the worst…..but like for so many of us in many aspects of our lives with our kiddos…we have hope for the best…but plan for the worst.

 

 

Day 4. D is for Details

Day 4

In grad school I learned this neat little thing called a ecomap…and then saw another mom post a personal one in a blog. A year ago, I decided to make one for the kids (for sake of privacy, a fourth of this map is not shown) For us, that means 37 total IEP objectives and 19 ISP service areas to track, 44 providers, 12 clinics and 6 agencies we are in regular contact. All before work and caregiving. When you meet a parent of a child with special needs–and if you run into them somewhere and they don’t seem to recognize you….or you already know one who seems extra high strung or flighty or snarky….well….cut them a little slack. Not everyone is built to keep this much in their head all the time.

Day 3 2015. C is for Coping

Day 3

In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.

Day 1. A is for Aides

Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

B is for Boredom: 2015 Autism Awareness Month

Day 2

While A2 is the most fun loving, joyous person you will ever meet and lovess to be on the go–like many children with Autism he struggles with extreme boredom since he requires adult intervention to choose, initiate and maintain activities. His explicit expression of wanting to play with other kids is emerging but often it leaves him alone knocking on the back door window as he watches children playing unsupervised across the street.

Xanax nightmares

I often have a sense of impending doom often to no avail.  I have had this most of my life, but could not qualify it until young adulthood.  Yesterday, I had an epiphany–of what it might be like to know A2 for just 5 minutes…..5 minutes without his yoke.  What A2 could have been like, but is not because I refused to take an antibiotic with bronchitis while pregnant, or didn’t eat organic meat or lived in the toxic dump of Nevada people call Las Vegas…..I came to this epiphany of what this situation might be like with an overwhelming sadness.  I had never considered it before and I don’t know why 5 years into his life I considered it yesterday for the first time.  The thought of what could have been is painful, not happy like you might think–he is such an amazing little guy–so happy and curious, talkative and friendly.  He owns his fears and loves like I haven’t seen anyone love.  I used to bombard myself with the idea that he wouldn’t be as exceptional if he hadn’t been born with that single palmar crease, bent pinky, faulty mitochondria or broken brain.  These are the things that make him who he is.  He is warmth and light at its best.  Words and logic will kill the pure instinct of trust and love, just like it does for the rest of us.  But alas, not so.  When I think of A2 for 5 minutes speaking and acting like his friends, his potential overwhelms me–I see the pure love and joy and trust, but with a little boy who has friends and uses the toilet.  He tells me with his words how much he loves me and his words tell a story not just his eyes and volume as he jargons and gestures as he gets in the car from school.  I think this thought took me over the edge.  I took a Xanax to help me sleep, forgetting that sometimes while it takes the choke hold off of my consciousness it releases and then smacks me in the face with a vengence in my sleep.  I was bombarded by nightmares.  Nightmares of people I know–I never dream of those I know….nightmares of being separated from my children….my children who need me….NEEEEEDD MMEEEE….children who have special foods they must eat or else they will get sick or starve, children, who, when lost can’t find the nearest grown up to tell them their name and where they lives and how to find me.  Children who need diaper changes and hugs to stave off fears of the cord that hangs from the garage door opener.  Children who use me as their communication device.  Children who trust others so much that they jargon at them unfettered by concern that they are not understood.  I won’t let anything happen to A2….not on purpose.  But on these days, these days with my head bobbing slightly above the water—instinctively taking breaths instead of screaming for help, I realize that impending doom is here….whether A2 is lost or not.

1st entry….bear with me…it will probably get better…

I have been mulling over starting a blog….for a very, very long time. It would serve as that teachable moment to those who cannot be taught.  Not just the special needs parents who needed a place to connect, but also to those friends and families of special needs parents.  They would log on ever so often and have an “aha” moment.   They would have greater empathy for those people…they would know what to say, and I, through my words would change the way society treats kids with special needs.  This has pretty much been the way I have attacked Asher’s apraxia.  Somehow….if I just went to every speech therapy appointment, every seminar….dragged his talker to every location, I would save him from what lie ahead.  Completely unrealistic…fantasy peppered with hope.

This blog is about Asher’s journey….While he remains blissfully unaware of his hurdles, I watch him as if he is running through water.  It is slow and arduous…he is frequently knocked down by waves and riptides.  The occasional jellyfish swims by and stings him in the leg for no other reason than it is a jellyfish.  He’s lost an arm floaty.  It is hard to watch your child struggle and feel at any moment he might go under…but he hasn’t yet and while the lifeguards sit in their red suits on the shore I often wonder if they will make it to him in time if he falls and doesn’t come up for air.

Enough drama.  Some days I am funny and sarcastic….some days I am dramatic.  This is a drama day–a day of writing where obviously I do not draw on my creative writing background….more to come……