[fbshare]This guest post was written by Anara Midgett, the proud Mommy of Clara-Bear (5, Down Syndrome, Autism), and 
Alan (3, Typically Developing), a Registered Nurse, and a freelance writer. She believes it’s time for society to throw away the cookie cutter and stop expecting individuals with Special Needs to do all the adapting. She encourages parents, teachers, and therapists to use creativity and passion to develop simple and effective accommodations based on each child’s unique strengths and needs. Anara shares her experiences, ideas, and discoveries on her blog able2able… Your Special Needs Resource Directory.
I loved losing at tug-of-war when I was a kid. Remember resisting with your whole body weight; digging your heels into the sand while pulling back so hard that your bottom was practically resting on the ground? I looked forward to the thrill of the abrupt letting-go that signaled we had lost. My legs would buckle and my feet would fly up into the air in a sudden reverse from puller to pullee. If we were lucky our team would get dragged a couple of feet before landing in a defeated, but happy, pile.
There’s no thrill to Tug-of-War when Autism’s holding the other end of the rope. I dread not knowing the next time we’ll suddenly lose control. When Clara-Bear was first diagnosed, I longed for a giggling and cheering team to add their strength to mine. It felt like a real enemy was pulling my daughter away from me while I fought not to be dragged helplessly behind. I think of Tug-of-War when I think of the self-stimming behaviors of my Autistic daughter.
Self-stimulatory behavior in Autism is considered to be an effort to force the nervous system to properly process a bombardment of sensory input. A typical nervous system runs on automatic. You might not even notice the temperature, smell, or lighting of a familiar room. Your nervous system allows your ears to selectively block background noises, your eyes to focus on what you choose without being distracted by every object and color around you, your skin to not feel your clothing. Your nervous system automatically assigns non-essential things to a proper place so you can function in a world of never ending sensory input.
The nervous system of an individual with Autism Spectrum Disorder (ASD) doesn’t run on automatic. Many individuals with Autism describe a similar sensory experience. Sights, smells, sounds, touches, and tastes hit them all at once. They must create a way to block out undesired input from an overwhelming environment and manually separate the good from the bad. Some individuals with ASD have said that having a nervous system that requires manual processing hurts.
Stimming seems very clever and useful when you think of it as a way to compensate for what the body cannot do. In a way, it’s a personal neuroprocessing survival mechanism. At the same time, the actions can be socially awkward and isolating. How does hand flapping, rocking, hair chewing, and humming help? Why do some behaviors remain after the need for coping or organizing seems to have passed? Some types of stimming can be difficult to watch, and more difficult to understand. Why do some individuals stim in ways that injure themselves, like head banging?
There are some that believe that not every type of stimming requires intervention. Parents or caregivers are often responsible for determining if their child needs a substitute for stimming behaviors. Clara-Bear likes to walk in a circle in the middle of the kitchen while I’m fixing dinner. I put on her music, and she paces round and round to the beat, always to the left. Stimming, yes, but it’s also self soothing. I’m welcome to join her Happy Circle Dance anytime. It feels appropriate in the privacy of our home.
I never know when Autism is going to give that rope a sudden, strong yank. The good stimming turns bad. She will begin to walk faster, out of time with the music. Her hands start flapping and she becomes overly focused on her left hand. I can still join in, but we are no longer dancing together. She can’t describe what she’s thinking or feeling. It’s up to me to decide if her manual sensory processing has crossed the line from self regulation to self destruction. I have to stop it before it consumes her and the Manic Circle Dance becomes the way she tries to organize her senses outside of our home. The Tug-of-War is on.
Autism does not let go easily and is a huge cheater. Tug-of- War is supposed to be about strength and persistence. Autism uses confusion, fear, guilt, and isolation to wear you down. Never believe a cheater. Class mates and neighbors can be educated. More appropriate substitute behaviors can be used to create or block input. Sensory Diets can be incorporated into your child’s lifestyle. Nutrition can be explored. Some children can learn self regulation. In extreme cases, medications can be used. The rules in this game will change constantly as your child grows and develops. Staying flexible gives parents and caregivers the strength to keep pulling.
I’m not as alone as Autism wants me to think. I have trained teachers, classroom aides, behavioral specialists, pediatric therapists, and physicians on my team. Our children’s hospital has an awesome Family Resource Library. The Internet is available 24 hours a day. My family and friends might not always understand how to fight, but they make great cheerleaders. Parents of children like Clara-Bear give me guidance and support. We aren’t as lighthearted as the Tug-of-War teams from my childhood, but we take no victory for granted and celebrate every chance we get. If you aren’t part of Team Clara-Bear, get out of our way. This Tug-of-War is no game. This is War. And we have one weapon that Autism will never possess. Love.
About Anara Midgett, R.N.
Share Your Thoughts...