Sunday, October 28, 2012

A Look Behind the Mask

I saw this note posted and shared several times on Facebook this year. I've tried to find the original poster/creator, to no avail. I wish I could thank them for creating awareness. I'm stuck in my little world of
G's issues, fears and needs and this post opened an even larger perspective to me. Considering my sizable exposure to special needs in the past several years, I have become much more tuned in to all children's behaviors, typical or other. But, on a daily basis, it's sometimes all I can do to live up to my own duties and concerns as an Autism parent, tween  and teen as well. 
How's that for Eye Contact?
I remember my older children in their baby and toddler years. I'd prep them and practice trick or treating behind doors in the house, giggling along the hallway. I let them help me pick out decorations, pumpkins and the type of candy to pass out. They watched or "helped" me decorate the house inside and out.  They picked out their costumes and wore them around the house for weeks. We went to so many Halloween parties, parades and playgroups before the big day that our displays of crafts, decorate yourself snacks, toys and goodies rivaled the Halloween night haul.  I told my husband it was to get our money's worth out of the costume, but it was to get them ready for the holiday, in all it's scary-ness. And yet, they still only lasted a few houses, if any.  My husband would bring them home crying big tears down their chubby cheeks, sputtering hysterically and reaching for the safety of "Mama". Let's face it, no matter what we try, how much we practice, Halloween is unnatural. We don't dress them in uncomfortable itchy costumes, strap masks over their ears that pull at their hair, and go for walk in the dark, nearly bedtime. However close we stand, be it the sidewalk, the steps, or the porch next to them - the only place they want to be is in your arms, or HOME. Instead we tell them to ring the bell and ask for candy with some strange words about tricks. No matter how much candy they get, it would be so much easier to give them candy from our own overflowing bowls. But tradition prevails and we work them into acceptance until they love it...usually.  
His "Scary" look
As years pass, we still go to the multitude of pre-Halloween events, for no holiday lasts but a day anymore, but a week, oftentimes a month. Children get over their fears as they see their bright plastic pumpkins fill up. They go trick or treating with whole groups of families, even get pulled like royalty in wagons, hayrides. They get over those early fears and embrace the joy, the compliments on their costumes, the spooky excitement, the spectacular decorations, the CANDY.

BUT, not all kids who look brave are. Our special needs kids react very differently to this strange holiday. His/her parents may have worked for weeks to prep them, condition their child for this frightening night with its odd customs and costumes. Each year, these parents work on the same issues as they once did with their babies, toddlers. Our kids stay stuck in those early stages or move slower into it, delayed. Therapists instruct parents: In all things - repetition, practice, patience, DE-SENSITIZE.

But...Halloween is all about senses, more than any other holiday, its' theme is designed to attack the senses, create fear. Many of our children are seized by fear and anxiety as part of their core symptoms. Many cling to safety, routine, familiar, CONTROL. Because this holiday is celebrated at night, that familiarity is gone, the safety difficult to discern. Their fear goes much deeper than typical Halloween fear. Their fear may quickly escalate to fight or flight; cause anxiety attack or full-on meltdowns, screaming, running, grasping for the familiar, needing control. For this reason, even parents of older children on the spectrum must accompany their kids and be on high alert to their body language, eye movements, tone of voice (if verbal), etc.. Our kids often don't recognize their limitations or know when to stop. We know our kids best: how to persuade them, cajole them to safety before they reach high alert. Not only would that situation be uncomfortable or embarrassing for the siblings, friends and (possibly) child - it could easily escalate to a dangerous level. My G runs blindly when he reaches a high level of anxiety or excitement. He may run into traffic, hide or run into someone or something.  The possibility for injury to him or others is high with all these factors - dark, many cords and odd placements for decorations, many walkers, wagons, cars, portable campfires, difficult visibility. It's certainly a recipe for disaster without carefully planned safety checkpoints in place.
Captain Candy in Control

Your house may be the first or only house a special needs child can find the courage to come to. We're blessed with great neighbors that we know. We skip those we don't. Because G gets spooked, he only goes to a few homes and then returns home to hand out candy, where HE is in control. Last year he made it a few short blocks, then ran as fast as he could home almost losing my speedy daughter, my husband minutes behind, out of breath and flustered. Thankfully we had walkie-talkies and a super fast sister. I shivered in fright to think what might have happened if my daughter had gone ahead with her friends earlier instead of spending the first few blocks helping G. Still, we were thrilled that he lasted as long as he did.  As soon as he arrived home he drew a big labored breath, let it out in a rush as let me hug him briefly, asking about handing out candy all the while. He put down his orange bucket, threw off his costume, and took post in front of the door. He was in control, Captain Candy in Control.

I've come up with a few extra ideas I'll put into place this year. Many are practices we've always done like flashlights, phones, etc., but this list will keep it all together.Because in all areas, as he ages and gets more verbal, taller, smarter - most people (and even us) take him at face value, as he looks or talks. He often fools others into thinking he has it all together. Don't get me wrong, this is exactly what my long hours of research, working with him, getting him extra help, and talking talking talking to him have paid off with (and won't cease any time soon). I'm very proud of this kiddo and what he's moved past. But, we need these items in place for that reason. We cannot take anything about his safety for chance.  Underneath, he's still ridden with anxiety and fight-or-flight responses to stress and fear.  During these times, he loses language and shrieks and runs, getting physical with anything willfully blocking his path. This is exactly what I want in a stranger-danger situation, but Halloween not so much.  His shrieks will fit right in to the neighborhood din, I'm afraid.

Day(s) Before:

  • Plan maps and gather all supplies, laying the path for a smooth Halloween day
  • Let G write and check off items on To-Do List
  • Ask G if he wants to go Trick or Treating, and how long he thinks
  • Plan route for trick or treating
  • Let G draw the Route Map with street names
  • Label the homes with neighbor's names and let him decide if he wants to go to unknown neighbors
  • Draw in Safe Points at close friends' home where he can go if he gets lost or scared
  • Pass out copies of map to whole family, whether they'll be with him or not
  • Decide if he'll accompany other groups of friends walking
  • Phones/walkie-talkies* for all
  • Flashlights for all
  • Fresh/charged batteries for above
  • Wear safety reflectors
  • Carry a whistle around his neck in case he gets lost or scared and walkie-talkie doesn't work
  • Carry whistle of another tune for Dad to for G to locate**
  • Ask G where he wants Dad to stand while he goes to porches 
  • Have Dad ask him every 15 minutes if he wants to continue to avoid overdoing it and meltdowns mid-route
  • If  Dad notices G is weary but he denies it, remind him that he can hand out candy at home or sort his candy
  • Have fun!

The Big Haul, time to sort!
*G doesn't have a cell phone yet, but did put it on his short list for his upcoming 7th birthday containing only one other item. :)  Sorry, not gonna happen, cutie.

** Several items overlap with redundancy. I've found that if I give G one way to communicate, he may not remember to use it. If I give him 2-3, he may find the right method that suits him. Example: If he's running, he may use the whistle instead of trying to figure out the walkie-talkie.

Pumpkin-Carving Day 2011 with DMUM,
an amazing Autism Treatment Fundraising group of University of Michigan Students

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