With the apraxia diagnosis came speech therapy (ST), occupational therapy (OT), American Sign Language (ASL), and photo labels on everything. With no specific cause for the autism spectrum disorder, our only direction for treatment was what was generally recommended at the time. This added applied behavioral analysis therapy for autism to the list. I'll write more about that later.
I consumed all autism literature whether we attempted the treatment or not. I recall the day that Constance’s father called me to announce, “Did you know Jenny McCarthy isn’t just an autism mom. She’s also a playboy bunny?” I had to clarify, “Oh no, she was a playboy bunny and then she became an autism mom.” This resulted in silence and then he said, “I think ‘also’ still works in that context.” I don’t know what he was doing in 1993 but it wasn’t getting a Playboy magazine.
There are many controversial experimental treatments for autism. Around every corner was a snare with promises of a “recovery,” “cure,” or reduction in diagnosis level. Ultimately, their cheese was hope and the traps meant to take our money could also harm our child.
In one extreme example, a healthcare professional recommended a treatment of drinking diluted bleach water to remove any parasites that might be in Constance’s intestines causing the autism. I would never give Constance or anyone bleach, diluted or otherwise. The bleach bottle says it’s poisonous in large print on the bottle. I went to business school, not medical school. However, I learned at a young age if a bottle says it’s poisonous you never, ever consume any of it no matter how small the proportion. No amount of dilution will change the fact that there is poison in it.
As a parent, your first responsibility is to the physical and mental safety of your child. The sneaky thing about these alternative treatments is that they prey on a parent’s ingrained need to help their child. They always come with parents who genuinely believe in them. The tricky thing about that is children on the spectrum don’t develop linearly. They jump around, gaining and losing skills constantly. As such, one child might have a miraculous result that can’t scientifically be tied to anything.
My rule of thumb was that I would only consider things if they were in addition to what was recommended (ST, OT, ABA, etc.) and if there was absolutely no possibility for harm.
I read all of the research being conducted relating to children with special needs. I discovered a study at Duke Children's Hospital where children got their own stem cells back. It was primarily to help with low tone for children who had mobility issues. Constance had incredibly low tone in her face and core. Some children having the procedure but not in the study had been able to speak before they even left the hospital. One mother told Constance’s father and me of their family’s pilgrimage home singing with their formally mute child the entire way much to the chagrin of other passengers on their flight. The healthcare professionals at Duke assured us that gaining speech was not the typical result. The treatment wasn’t meant for autism or apraxia. However, learning that they could do the procedure there and it had worked out gave me the ever elusive, hope.
I arranged with Duke Children’s Hospital and the cord blood bank for Constance’s stem cells to be given back to her. There was no way for this procedure to harm her since they would be giving back her very own stem cells that I stored at her birth from her umbilical cord blood. The only potential harm would be to the mental health of Constance’s father and I because we wanted and expected a miracle. When Constance woke in the hospital bed, she made this intense eye contact with me. It was the first time she’d made that kind of unblinking, wide-eyed eye contact with me in a while. I pointed it out to Constance’s dad immediately. He reminded me that whenever she’s scared she makes intense eye contact with me and it didn’t mean any potential outcome was on the horizon. She was simply reading my face to determine if she would be alright.
The procedure did improve her body tone. I don’t know how or if the procedure impacted her future development in terms of progress toward verbal expressive speech or other neurological challenges. I can tell you that she didn’t wake up and start talking. Like before, she didn’t say a word. We didn’t sing all the way home.