Today is World Autism Day. The following I wrote months ago after a particularly difficult day with our Aron Elijah. We wrestle a great deal with how much of our journey to share publicly, but alas, on this day set aside to honor and educate about all the amazing children, adults, mothers, fathers, siblings, and families, who live life on the spectrum; we felt the need to give light and insight into the world of all those like our Aron Elijah, who the world still does not understand.
Not all individuals on the autism spectrum look, and at all times seem, as though they are on the spectrum. Some, like our Aron, are overtly verbal and aggressive, too loud, and TOO much by the world's standards. His inability to read social cues at times isolates him in different ways than children on the opposite side of the spectrum, and he is often misinterpreted. Because our child is fully functional we do not often fit in with the support groups of families on the spectrum. We truly are so very fortunate for all our son is able to engage in, but in all honesty we feel alone. On this day... I feebly attempt to give a softer voice to Aron Elijah...and all those loud, constantly VERBAL, yet unable to truly communicate, anxiety riddled, hyper intelligent, children and adults, who fall on, "the other side," of the spectrum.
Raising four high spirited, autonomous, (let’s just call a spade a spade), WILD boys is hard. When one of those boys lands anywhere on the vast spectrum that is autism, it changes the dynamics of the entire family. For better or for worse, we rise and fall with the contradictory waves of rigidity and unpredictability of the spectrum.
What seems like an easy request for a play date, sleep over, or family invitation for dinner, sparks anxiety, fear, and questions. Immediately we retrieve an arsenal of coping mechanisms and begin the process of preparation. You see, I spend the majority of my life hedging for my son, so he can function, “normally,” in any and all social situations. So he can appear as though he is normal. Because after all, next to achieving the next level on his current video game obsession, his greatest desire in life is to be, “normal."
So, I hedge, and I do all I can to make sure my boy does not reach his boiling point in public. I often hear, “But he looks and acts so normal. If you had not told me I would have never known.” I wish I could tell these people what had transpired during the car ride to the social activity. Could they possibly comprehend the physical and verbal assault on the rest of the family in the car ride home? The coaching? The planning? The exhaustion? Surely not, and I would not dishonor my son by delving into it, so I smile and nod and take the, “compliment.”
But should I be proud of the fact my son is forced to watch social cues and mimic learned responses to these foreign behaviors? Should I accept the compliment of him appearing to measure up to society’s standards of what is normal? I do not feel proud, because I see his hands. I see them fluttering at his sides. I see them in his mouth. I see how when he reaches to take the food offered to him on a tray he cannot manipulate it, and his host has to hold it 10 times longer for him than any of the other children. I see the odd movements. I see the overt aggression. All this is often seen by others as hyper activity...and yes, poor parenting.
I push aside my personal pride, because I see him...my hard as nails, tender, beautiful boy. I see the price he willingly pays to be, “normal," and I dream of his unbridled spirit set free.
He is free at home, and the cost of social interaction is sometimes just too high to pay, so we don’t. As parents we do not enjoy socializing as much as other adults. The cost is often just too high. As siblings, his brothers often become very protective and are equally as exhausted as their parents. Our home is safest and happiest when all members are accounted for, and all quantities known. Aron's world is right, therefore, so is ours.
One of the biggest assaults on our family’s harmony is school. Our son is mainstreamed at school now, and for the most part he does not have behavioral issues, for which I am so thankful. But the preparation for, and the aftermath of, a day in a mainstreamed classroom is indescribable. The instant the car door closes, sometimes before, the stemming begins. The verbal demands and the aggressiveness if the demands are not met immediately. The physical agitation and aggression toward his brothers and myself. There are no tears, just rocking, incoherent sounds, yelling, kicking, punching, and often severe headaches. My son is exhausted from being, “normal,” and we all pay the price...willingly.
How many other 3rd graders had to overcome the sounds of the air conditioner, the lights, and the movements in their classroom, in order to even hear their teacher? How many other of his peers had to try 5 times harder to form a letter because their brain simply does not communicate with his/her index fingers and thumbs? How many other kids had to block out the world in order to learn?
I often wonder how much longer my beautiful baby boy can endure. Am I cruel for not taking him out of school, rescuing him from a place that evokes such internal exhaustion? (Let me be clear his teachers have been amazing with him and have exceeded my greatest expectations). Yet, every single day I drive away from the school I contemplate never driving him back and forcing him to do things the very chemical make-up of his brain battles against. Every single day I come to the conclusion he must go, because in order for him to ever exist in a life out of my home…he must continue to fight to be part of a loud, disorganized, at times, too structured, too hot, too cold, unpredictable, scary, foreign universe.
Since the day he was born I have said, "Aron Elijah is just not comfortable in this world."
How much longer must he endure?
Forever....Until God calls him home.
How fortunate is he God gave him a fiercely wild and spirited heart with which he can endure? How wise and merciful was his creator to surround him with three protective brothers, equally as WILD at heart and resolute in their protection and understanding?