It's a stormy Sunday afternoon, and I am in bed for the last couple of hours, still feeling the effects of the reality experience I participated in yesterday. I am not complaining though, not at all. I am aware of the sensory overload that I willingly participated in to have a glimpse into what our students and our children feel every day.
The experience of deafening sounds, one after the other, and at the same time, the blinding of the lights, and the loss of balance and depth perception immediately upon donning the glasses I was given, not only impacted me at the time of the reality experience but now even a day later. I haven't felt right since. I am sure it will pass. It does not pass for our children with Autism.
To give you just an idea, the tasks that were presented during the video of annoying but daily noises that we typically filter, were impossible to do for me. Find a card with a five of spades, put the bi-colored discs in order, spell Autism with letter tiles, put coins in a piggy bank..... all while wearing distorting vision glasses, and heavy work gloves that seemed to make my hand separate from my body, and also two feet away.
This is an idea of what our children suffer through daily. How do they manage to find their classroom, find their task, listen to directions, and complete a task. I believe now that our children with autism, have incredible patience and self-taught strategies just to be able to manage the day.
We, of course, can never know exactly what autism is for each individual, but we are closer to understanding. There are young adults with Autism that are becoming more verbal, or are more verbal, and they are explaining to us what it feels like for them. What abilities they must create not only in order to follow the simplest tasks of life, but to hyper-focus on something that they enjoy to be able to participate in their own life.
When the actual experience was completed in the fifteen minutes that changed my life,
I felt such a deep sadness for my little girl who is no longer little. For the past eighteen years that she may have been struggling in some of these sensory nightmares. The Trainer asked us not to feel pity, and I understood his intent, but I am her mother, and it made me sad.
For me, I have tried desperately and somewhat successfully to participate in her world, to be by her side in all life's adventures, but the sadness comes from how hard she had to work to come to mine. She does well. She can bring me a plate from a table, and she on her own will rinse it, and help me with many household chores, but if she experiences anything like I did yesterday, and was unable to walk because what I was seeing was a deep hole for the carpet, and my brain said I will fall into darkness if I proceed. I remembered the task list. I compartmentalized in my head how I would do the task, and yet, I physically could not pick up a playing card. There seemed to be a million cards but not the one I was looking for. The same was true for all of these simple tasks. My hand and my arm seemed to be detached from my body on the left, and the right had no grasp or coordination. I am still feeling ill over 24 hours later. Nauseous, unbalanced, and definitely not myself.
What can I as an educator, and a parent of a child with Autism do with this information? Certainly, I will be more aware and possibly more sensitive when needed. Bri is taking a long afternoon nap, which is unusual for her, but I now feel her need to rest and calm the body. This need will be taken more seriously and I will attend to the signs of needing bodily and mental rest more diligently. There is a level of knowledge for understanding, and most Teachers and Parents are excellent at using that knowledge to create safe and happy learning environments for our special population. I might just encourage from this slight window into their world to really watch for the signs of distress or need for more support in any area. Possibly avoiding significant melt-downs by watching for the symptoms or signs hours before. Knowing or at least instinctually feeling when enough is enough, or the task is too much for right now. Coming at tasks with more patients, more processing time, and more supports.
I don't have all the answers. I am learning more everyday, and I rely on what I have learned with my education, career and the raising of my daughter.
I am looking forward so much to sharing my book " Connections: A journey in love and Autism, to be released in June, as well as contemplating my next book as I learn more about our unique children, and all of their strengths. There is so much more to learn.