Hey Eve, it’s Whitney writing and I am listening intently to you, just watched your videos and found them fascinating. I applaud your writing style and intimate description of the pain of sensory overload. My favorite line was “my body might say ‘hell no’ and even when my mind says ‘hell yes'”! So let me respond to you with the same dignity you have shown me, and thanks for that.
First, I understand sensory overload (better now thanks to your writing) but what you don’t realize is that this was not the issue for Zack. He experienced outdoor sports, amusement parks, places with tons of noise and chaos without so much as flinching. His particular fear was of unknown indoor spaces because he could not visually decode what was coming next…so at the threshold of entering an elevator, movie theater, bowling alley…was enough to provoke an outburst. He did not know what was coming and he was intensely fearful of the unknown. Many folks have written asking why I didn’t use headphones for the Elmo incident and the reason is that volume was not his problem, it was fear of the unknown, and he had proven that many times.
Second, you state with authority that I committed abuse but have not yet read my book. I have already explained that the Post piece was heavily redacted, so if you truly want to understand everything that led up to the incident, and the whole truth about the incident itself, including my motivations, you cannot do that without reading all the facts. You are prejudging a story that you have not yet taken the time to fully understand.
Third, calling actions abuse does not factually make them so. I never laid a hostile hand on my son. What I did for Zack was a protective hold to keep him from biting, scratching or otherwise hurting himself, there was no cruel intent behind it. I had to restrain him many, many times before the Elmo show for his own good, such as when he needed an antibiotic shot but was so panicked he refused to sit still. When he needed to have teeth extracted and was so panicked the doctor could not apply the face mask to sedate him for surgery. When he panicked mid-flight in an airplane and the passengers were so frightened, as was Zack, that we almost had to land the plane — if you check out my website that chapter is featured as “Flashback.” Author’s webpage: http://whitneyellenby.com/ (click on “Autism Uncensored,” scroll down to “look inside”).
And by the way, I have also had to restrain my NT daughter for her flu shot when she resisted out of intense fear. It is not uncommon for parents to occasionally need to use physical holds of their children in specialized instances when the situation demands it for their safety.
Finally, I state freely that I did override my son’s protest when I held him rooted to the spot in the places he feared. I did this to him and for him because his fears were so strong and the outbursts so frequent his world was shrinking – he could not go to birthday parties, movies, shows, airplanes, etc…and it was making him miserable to be entrapped by his fears. I tried every other behavioral approach before resorting to overriding his will, but nothing else worked and the intensity of fears remained constant. So, knowing that Zack was stronger than his fears, I made the decision to insist that he enter and remain in feared venues even when he clearly did not want to. My thought was that if he remained long enough he would learn that there was nothing to fear, nothing terrible that he imagined might happen would actually come to pass…and that is exactly what happened. My restraint was protective, not abusive, in the hopes of allowing Zack to remain in place long enough to overcome his phobias.
Did I override his clear protest and communication that he wanted to leave? Yes. Looking back now would I do it again for Zack? Yes. Did it work based upon my individualized assessment of what my own son could handle? Yes. Am I endorsing what I did for other parents or professionals to try with anyone else? No. My methods were specifically crafted to my son – based on his exact strength and movements, my studied knowledge of his phobias, my ability to whisper to his exact fears, my own strength and abilities base don past events. That is why I make very clear at the outset of my book that I do not endorse my methods for others to follow, this is not a prescription and I am not a clinician or doctor. I am simply a mother who found a way out of the darkness and my story is about discoveries made along the way…this is stated in the Prologue section which is also on my website. Author’s webpage: http://whitneyellenby.com/
And here is where you & I agree. People with Autism are entitled to parity, equality, equal access to all the same places and life experiences as their disabled peers. What I did with my son was a strategy for moving him past his fears so he could calmly engage with the world, without fear. It worked in part because it was born of love, respect for him as an individual, respect for his fears and my refusal to allow his fears to swallow up his life. Zack’s life was and is too precious to me to surrender to fear, public ridicule, or even the public shaming of me by those who were at the venue. My love for him is stronger than any fear about the outrage my retelling of my story is provoking now. Like you, I also have my own stories, my own right to be heard, my own messages to send out to the world based on what I’ve learned in my life. I do not speak for you, nor could I. I do not speak for Zack, nor would I. I speak only for me and I will not be silenced because others find my voice offensive, just as I don’t seek to silence theirs.
So please, keep talking to me, and know that I am hearing you loud and clear. I thank you for listening to me too.