#ElmoMom Responds To Autistic Activist | #AutisticMomsRise

Hello Please know that I respect all opinions and anticipated anger, confusion, etc..from my unconventional tactics with my son.

Out of respect for serious issues you all have raised, please stay with me for this long explanation. First, the article was redacted in ways that made it hard to provide a more complete history leading up the event. The issue with my son’s phobia was not merely the show, but various unknown indoor spaces including airplanes, hospitals, elevators, he was breaking into full-body tantrums everywhere. Thus by necessity, I had already become an expert in physical restraint of him, and had cultivated the ability to “speak to his fears” by using certain mantras.
I had tried every less invasive alternative – intensive therapy, rehearsals, photos, even gradual exposure which ended up exposing him repeatedly to the same venue with explosive reactions so bad that simply driving down the street towards the venue triggered them. By the time I decided to do a single exposure, it was in the interest of overriding his fears, once, reseting his terrorized association, and staying put precisely so he could see the objective of the confrontation – Elmo – and this understand the purpose. The only other possibility at that point was to medicate him to ease his intense anxiety and at age 5, I thought he was too young and that risk too great.
That said, make no mistake, I knew I was taking a big risk with Zack, not physical so much as emotional, but he was already breaking into severe tantrums daily, petrified and unable to leave the house, so I felt getting him over his fears was a risk worth taking. There was no way to prepare the public ahead of time b/c the venue is a huge auditorium, and our struggle took place in the hallway leading to the show, thus we did not ruin the performance for anyone.
We did create an unavoidable scene in the hall, but I was within my rights to ask, as a paying customer at a public venue seeking equal access for my son, for time to let me get the situation under control. Zack was not a danger to anyone there. I did not physically hurt him in any way but rather held him tightly so he could not self-injure. I did this to expose him to something I knew he would love, Elmo, but first had to get him over what he feared, indoor spaces. No, going to an Elmo show is not a right; but equal access for children like my son is. And while I felt terrible about the discomfort posed to others, there is no right to be spared discomfort of screaming kids – ask anyone who’s endured a flight with a screaming baby or a toddler who drops down and gets forcibly dragged up by a parent.
Believe me, I was not having fun, I was simply determined and in this instance, I put my son’s needs ahead of public discomfort for the cause of making history in his own life should he succeed. The best I could do was inform the public by repeating over and over that my child had Autism and I was working with him. Again, this was one of many exposure events to get him acclimated to places he had to learn to tolerate – when absolutely every other intervention had been tried and failed.
Yes, I temporarily overrode his will but it was out of love and profound respect for what I knew he could accomplish if pushed beyond his comfort zone; to presume he was incapable without trying would have been infantalizing and disrespectful of his own ability to tolerate discomfort. Zack did not disassociate, he actively calmed once he saw Elmo, began singing along with him, bouncing in his seat, etc…he not only conquered his fear, he understood that he conquered his fear. His self-confidence following this event soared. Finally, remember this incident was over 10 years ago, there were no Sensory-Friendly performances, I would have gladly taken advantage had there been. This was not about me, it was about Zack and taking austere steps to give him a fuller life which he, and every child, deserves. I pushed him because I respect him, while taking steps to ensure he did not hurt himself.
He went on to conquer his other fears and I’m fully aware it could have gone in another direction, but that was the risk I choose. If you take time to read my non-fiction book, you’ll see this event in a much deeper context about the urgency leading up to it, the risk of home confinement, depression, chronic anxiety. I don’t tell others to do as I did, but I do encourage other parents to shed the shame commonly associated with our children’s unconventional behaviors, tell the truth about autism, and advocate for your child by not getting defensive, just factual. I did and still do occasionally apologize for his disruptive behavior, but never for his Autism.
 
Because he is magnificent – capable of going everywhere and navigating the world with confidence. Thanks for your honest feedback, I hope you will consider reading my true, real-time story to get the larger messages about casting off shame, demanding equal access, and allowing our children on the spectrum to live on their own terms.
Best to you all in your respective journeys, Whitney
 

2 Replies to “#ElmoMom Responds To Autistic Activist | #AutisticMomsRise”

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