image courtesy of freedigitalphotos.net

Emergency Responders: Why Address Sensory Issues First?

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

Sensory Processing issues play a bigger role in the daily lives of those with Autism and Asperger’s than most people realize. No matter what behavior I’m addressing with my son or what I encounter on a call, I always start with reducing sensory triggers.

Years, ago, when I finally had a firm understanding of this why this works, I perpetually tried to explain it to the other adults, teachers, caretakers, and yes, even physicians in my son’s life, who insisted that my child needed to be medicated for hyperactive and impulsive behavior.

I remember waiting months to see a highly acclaimed pediatric neurologist before my son was officially diagnosed with Autism. He was four at the time. At our long-awaited appointment, we were in the waiting room for an hour and then the doctor’s office waiting for yet another hour. What four-year-old would NOT be climbing up the walls at that point?

The doctor came in and promptly spent 10 minutes with us.

“Write your name, son.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

“Ma’am, your son has ADHD, fine motor dyspraxia, ODD (Oppositional Defiant Disorder), and maybe some sensory stuff going on. Here’s your prescription for Adderall. See you in six months.”

Whoa… wha? Oppositional DEFIANT Disorder? He was FOUR! When my daughter was four I practically wanted to SELL her. (Kidding. Mostly.) Of COURSE he was hyper – we just waited TWO hours in a closed room to see this man. And what’s with the meds? No explanation of any of these “disorders”? No constructive suggestions? No support or help?

Nope.

I researched all of the labels that supposedly defined my baby boy. Yes, he was hyperactive, but the first one that really grabbed my attention was Sensory Processing Disorder. I went through checklist upon checklist and instantly started understanding my son and the world he lives in. Many of his “quirks” were a direct stress-response to how he interprets all the sensory input from his day-to-day environment.

I soon had an entire sensory evaluation done (I say “soon,” it was actually another nine-month waiting list), and then I learned so much more about how my son experiences the world around him, and how physically painful it could be.

Once I started to differentiate between “My body hurts, I’m exploding inside and need help” and “I’m being a boy and testing my boundaries” my whole world changed, and so did my son’s.

What Does This Have To Do With Responding To Calls?

I’m a big fan of Asperger Experts – two adults with Asperger’s Syndrome that have navigated their way through the roughest times of childhood and adolescence and are now helping parents and educators do the same.

They published a video called, “The Sensory Funnel.” Although they are primarily speaking to parents and therapists (or those themselves that have Asperger’s), the scientific explanation about what’s going on is invaluable. You get to hear an adult’s first-hand experience of what the world feels like and how he not only learned to cope with all his struggles but to thrive in spite of them.

For us as responders, I chose this video for you to see as an “abbreviated” plan on scene – an explanation of why it’s imperative to deal with the sensory triggers first. The video also illustrates why trying to go from the top of the funnel down will most likely not get results, especially when trying to gain compliance or diffuse a situation.

Let me know what you think!

2015-06-24 12.50.17

Weekly Autism Tips for Emergency Responders: Drawn to Water

2015-06-24 12.50.17In my Autism Training courses I teach parents and emergency responders to search water first if a person with Autism goes missing. This includes rivers, pools, lakes, ponds, and even fountains. 91% of deaths of children with Autism are due to drowning.

These are scary statistics. I have a wanderer. When he was three we went to visit family in Florida and he figured out how to unlock all the doors and gates that led to the pool in the back yard. In a flash he was gone and in the water.

My son used to spend hours in the tub and could often be found playing with the hose in the front yard. Toddler time at the neighborhood pool always consisted of him trying to break free of my arms and just GO. It didn’t matter where he was going, he just had to go. Slippery babies are hard to contain as it is!

So, yes, I know that children with Autism are often drawn to pools and other bodies of water. But why? Experts said they find them beautiful and are fascinated by the way light sparkles on the water.

The Autism Society of the Heartland’s Executive Director offers that, “Water is a fixation for them because when they get in the water, it’s like a big hug and it wraps around them. And it can relax them and help with some of those sensory issues that they might have.”

That is consistent with the feedback I hear from many families and children I have worked with, including my own child. It is a soothing escape from the whirlwind of sensory input that often overwhelms them. Unfortunately, an Autistic child’s fascination with water is typically coupled with no sense of fear or perception of danger and can end tragically in the blink of an eye.

As parents, we do our best to protect our children – being prepared for emergencies, knowing the lay of the land and all bodies of water surrounding home and school, installing additional locks and alarms at home on doors and windows, and of course, seeking swimming lessons.

As responders, you don’t know how involved and tenacious parents and caregivers are. You don’t know what precautions are in place and if they’ve been bested by a clever and curious child. All you know is there is a child (or adult) missing.

The National Autism Association states the following information for first responders:

  • Nearly half of children with autism engage in wandering behavior
  • Increased risks are associated with autism severity
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Accidental drowning accounts for approximately 91% of lethal outcomes
  • Other dangers include dehydration; heat stroke; hypothermia; traffic injuries; falls; physical restraint; encounters with strangers

Because many individuals with ASD go directly to water, it’s important to treat each case as CRITICAL. Remember that every person with Autism is different, so utilize input from the child or adult’s immediate caregiver and keep search efforts ongoing. Some children with autism have survived as many as six days without adequate food or water.

spirit of autism loaf of bread

Autism Parenting: Are You Going to the Hardware Store for a Loaf of Bread?

spirit of autism loaf of breadThere is a really funny skit I remember from my childhood years of watching The Electric Company about sweet rolls.  It was a simple conversation between a waitress and a customer:

“A cup of coffee and a sweet roll.”

“We’re out of sweet rolls.”

“Glass of milk and a sweet roll?”

“We are… out of sweet rolls.”

“Iced tea and a sweet roll.”

“We are OUT of sweet ROLLS.”

“Orange juice and a sweet roll?”

“WE ARE OUT OF SWEET ROLLS!!!!”

(silence)

“Okay, then I’ll just have a sweet roll.”

It still makes me giggle, probably because it describes most of the people I interact with daily :)

Here’s the video if you need a memory jogger:

If you look at it from a different angle, in relation to how your Autistic child processes information, it can lift another veil in understanding and diffusing some of those frustrating moments.

How many times have you had to repeat a command or request to your child for what you perceive to be a simple and obvious task? If your house is like mine, it can sometimes be seven or eight, and then my patience can surpass simmer and go straight to a rolling boil. While it’s true children make you repeat yourself in general, consider that your Autistic child simply and honestly may not understand what you’re asking, nor do they know how to ask for clarification. Many times, if a question or statement isn’t understood by my son he will simply bypass it and move on as if it were a “File Not Found” error that automatically redirected to a new website.

Multiple commands are difficult to process. It took me a while to realize this and stop perceiving my son as being defiant.  Asking him to put on his socks and shoes, brush his teeth, and meet me in the car while I pour my morning coffee (the way I would process the morning’s rituals) would result in absolute shutdown.  I would most likely finish my tasks, expecting him to be diligently checking off the list I assigned him, and then find him on his Nintendo DS with none of the items completed.  Naturally at that point (after a minor litany of loud grumblings), I would also expect him to hurry through the list sharing my sense of urgency, understanding that we were now late.

It never happens that way.

Here’s the deal. He doesn’t process multiple commands. He doesn’t break his ritual or the order things should be done because I am yelling that we’re late. He doesn’t “just know” what comes next without being told. I can tell him we are out of sweet rolls until I’m shouting it, but he will still ask for them. Why? Because at this time, that is how his brain processes information. It is MY EXPECTATIONS of him that are causing the frustrations and meltdowns, not his behavior.

If I continue to repeat myself in these same fashions, doesn’t that mean I’m expecting him to do something he’s not capable of? Wouldn’t that be the same as going into a hardware store and asking for a loaf of bread? Would I keep asking the cashier over and over for bread, raising my voice and getting frustrated, or would I eventually figure out that I have to go to a different store to get what I need?

I learned the hard way that I can’t get mad at my child when I am expecting something from him based on the way I operate and think. Something he simply isn’t capable of. Boy do I love the mornings so much more now that I am looking for bread in the right store, and so does he!

BONUS tips for the morning:

  • Single commands (Put your socks on. Good. Now go brush your teeth. Great job!)
  • Predictable routines
  • Visual cues hanging in a central location that you can refer to
  • Laying out items the night before
  • Saving TV or games until after tasks are completed (still working on this one!)
  • Allowing extra time for zippers, buttons, etc.
  • Having races to see who finishes some of the tasks first
  • Using a timer – making it a fun game
  • Lots of positive reinforcement!

How often do your expectations cause communication breakdown with your child? Share your thoughts by commenting below!