A Living, Breathing Miracle

​We recently heard from an old friend, Sharon O’Shaughnessy, with an update on her daughter Rachel’s progress. Their story is not only inspiring, it shows the extraordinary lengths ACTG parents are willing to go to in order to give their children the best chance at a full life. And that’s exactly what Sharon did.

​When Sharon was pregnant with Rachel, 26 years ago, they were in a very bad car accident. “Somebody crossed the center line and took us out,” remembers Sharon. “We were never really sure if that had anything to do with anything,” but it was clear from birth that there were problems. As luck would have it, Sharon isn’t just Rachel’s mom, she is also a speech scientist, who trains people to use residual reflexes to phonate through neurodegenerative diseases, like Parkinsons. So she had the knowledge needed to understand what was going on with her child and what it would take to help her.

From birth, it was clear Rachel was facing significant challenges. “Her eyes were open when she was born, but then we didn’t really see her eyes for nine months, like she was just sleeping all the time. There was no evidence that she was impacting her world at all. I tell people who are non-medical, it’s like a coma, she was not responsive, you could do all kinds of things and she wouldn’t react.”

​​They lived on the East Coast. “This was before the Internet, in 1995, and I knew I needed to find some kind of neurological training, but it was just not to be found locally. So I reached out to friends all over the country, and eventually, a speech pathologist who worked in Minneapolis said she’d heard of A Chance To Grow and thought it might be what we were looking for.”

​“It was exactly what I was looking for, something crafted for Rachel. I knew that it was going to take a lot of repetition to affect her neurology. So we came out to meet Art Sandler and he was amazing. Rachel’s reflexes were just completely in disarray, so we had to start with basics.”

Sharon and Rachel began to make regular visits to work with Art, using his neurophysiological reflex-based approach. “We’d come at six-month intervals, we’d get a hotel room, we’d go to Mall of America because that was fun, and Art would teach us reflexes, like the China Doll reflex.” Sharon would then do them with Rachel for 20 minutes, six times a day, six days a week in a therapy room she created in her home.  

“I knew it could be a long, long time before we saw anything happen and I also had a healthy respect for the fact that if we didn’t do anything to her, maybe she might improve on her own.” But over time, she began to see progress, so she was sure that the process was working. “Rachel was 10 months old before we realized she had any sentience at all,” when she was able to display some intentional movement. Still, Sharon kept at it. “Rachel had been completely silent as a baby, but when she was 3, we were on a family vacation in a big hunting cabin and my aunt came down the stairs and said “Rachel’s making such a lot of noise up there!’ and I said, ‘she can’t be, Rachel’s silent.’ And we went up and she was actually doing the very first baby sounds of babbling, which she had never done before. She started to walk when she was four, which was also a huge milestone no one outside of Art and our family had expected.”

They stopped coming to visit ACTG then because they knew she was at the level she needed to be for her to pick up the next abilities, but continued to do the exercises at home diligently. “I had been treating her as a communicative person all this time because I know from my training in speech science that people understand before they can communicate, but it was a one-way street. Then, when she was 5 years old, I was reading to her and said, ‘I went to the doctor and the doctor said,” which is a call and response activity, and she actually responded with all the vowels in the phrase, in order!  I was thunderstruck. We knew then that she had intellect that we hadn’t been able to otherwise access.”  

​She continued the work until Rachel was six, when she was able to start school. “The rest of our lives was colored with my ACTG knowledge. We always felt like school was extra. They offered OT, PT and speech every week, which we knew was woefully inadequate. I was very involved in how they worked with her, keeping the ACTG principles in mind. And we always made sure that we really worked with her a lot at home.”

But all that work came with a cost to family life. “There were so many things that were just really difficult. It changed the dynamic of my marriage; we got divorced. I also had a 2-year-old and he grew up knowing that his sister’s difficulties were going to take most of our resources. But every day, the hour before he went to bed, I made sure that I was his and his alone. I think that helped a lot. We have a great relationship. Now he’s a neuroscientist!”
 
All of that work was worth it.  At 26, Rachel is “doing phenomenally well. She talks in complete, complex sentences, she’s completely ambulatory, she plays basketball, she swims independently. She’s living in a group home where she can choose activities she enjoys, like horseback riding and going to the movies. She has agency over her life. This means everything to me -- when she was little, I didn’t even know what food she liked. She did not express herself at all.”
 
Sharon’s message to other parents:
“Whatever you do now will give your child more independence in the future, every single gain is really important. It’s going to be hard in the short term, you may not see gains, especially if you’re not trained to see them. But what you’re doing is building neurons. If you think about that, you realize any positive motion forward will pay off.”
 
“To know that Rachel is a living, breathing adult with friends, who has great relationships with her whole family, it’s a stupendous miracle to me. I would never have guessed when she was nine months old and we started this whole thing that she would be living as independently as she is now. She’d be the first to tell you: ‘I am an independent woman!’ It’s awesome.”