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.
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.”
“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.”
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.”
When Colette Friest traveled to Minnesota from Iowa to take her seven year old daughter, Lainey, to visit a learning center in Edina, she did not want Lainey to miss out on the occupational therapy and speech services she receives weekly while at home. A friend recommended she see our specialists at A Chance To Grow in place of her own while in Minnesota. Little did she know that our occupational therapy program would provide results that would change her daughter’s life forever.
When Colette first arrived at ACTG to take Lainey to see Occupational Therapist (OT) Angela Rosales, she expected Angela would use the same traditional approach that she has seen OTs use with Lainey in the past. Instead, Angela used our own unique approach, which differs from approaches at other therapy centers because it uses brain-friendly methods such as Masgutova Neurosensorimotor Reflex Integration (MNRI)* to lay the foundation for motor function and everyday life skills.
Colette says that being introduced to reflex integration therapy was one of Lainey’s most important and life-changing experiences. Before her time at ACTG, Lainey was nonverbal, had fine and gross motor issues, lacked focus and had difficulty with fine motor planning. Other challenges included reading and talking.
OTs at ACTG have taken courses in MNRI and use the method often. Julie Neumann, ACTG OT, said that focusing on the integration of Lainey’s reflex patterns allowed Angela to lay the foundation necessary for Lainey to develop higher-level motor and everyday life skills. As a result, Lainey’s life has been drastically changed.
“We have seen huge differences in our daughter in just the two months that we have been doing reflex integration, and the fact that ACTG has OTs who can do these reflexes with kids can make a big difference in children’s lives. Many parents are like us and don’t have time to go to conferences and learn things like reflex integration, so this is huge. If it wasn’t for Angela introducing me to reflex integration at ACTG, we wouldn’t know about it and we’d still be stuck,” Colette said.
When asked to reflect on her time working with the Friests, Angela said, “They are such a solid family. Colette has a fearless approach when helping her daughter succeed. Her initiative and ambition are very impressive.”
For eleven weeks, Colette and Lainey stayed at a hotel Monday through Friday, traveling back home to Iowa on most weekends. During her time at ACTG, Lainey also saw Bridget Russ for Speech Therapy and Becky Aish for Audio Visual Entrainment and EEG Biofeedback. Colette said these additional interventions further strengthened Lainey’s ability to focus, talk and overall, act more mature.
Now, over five months later, Lainey’s verbal skills continue to improve. Finally, Colette is able to read stories to her daughter from beginning to end, and Lainey actually follows along!
“We had a great experience at ACTG. I want other families to hear about it. Lainey has been in therapy since age two, and we have seen more improvements in two months than we saw in five years. If parents really want to do something that can be life-changing for their child, I can’t stress highly enough how much of a difference A Chance To Grow’s programs can make.”
Another thing Colette said she loves about ACTG is the fact that our Founder and Co- Director, Bob DeBoer, has been in her shoes.
“He had a special needs child himself and understands where we’re coming from. That makes a huge difference. Not many therapy places start with a founder who had a special needs child and knows exactly what we’re going through,” Colette said.
*The Masgutova Method (MNRI) focuses on the important role of children’s automatic motor reflexes and underlying neurosensorimotor mechanisms. Occupational Therapists trained in the Masgutova Method learn to understand the difference between automatic motor reflexes and learned motor reflexes.
Thea entered first grade just after her seventh birthday. She was very excited about learning to read. Her parents had no reason to believe that she would have any trouble learning since she had flourished both academically and socially in kindergarten. Her accomplishments up to this point were astounding.
She was born prematurely and required oxygen and intravenous nutrition during her first three years of life. Early in her infancy, doctors said she was both blind and deaf. Later, she was properly diagnosed with dyspraxia and learned to communicate through sign language. She began speaking by her third year and each passing day she became closer and closer to being “on track” developmentally. When she entered school at the age of six, Thea seemed to be a perfectly normal kindergartner. Then came the first grade.
At the first parent-teacher conference, Thea’s teacher informed her parents that there were signs of serious trouble. Thea was exhibiting learning, behavioral and attention problems. The problems were so significant her teacher did not know where one started and the other left off. Her parents were devastated. Even worse, Thea was very upset and became frustrated as she kept falling behind the other students. Her medical team and school began testing.
The test results indicated that Thea also had dyslexia and her frustration was creating the behavior problems. She was eventually placed on an individual education plan while beginning special education and occupational therapy in school in school. At this time, Thea’s mother happened to attend a lecture by Carol Kranowitz, author of The Out of Sync Child. The free lecture was held at A Chance To Grow (ACTG). She had never heard of the organization and decided to take a tour after the lecture. “I was so impressed,” commented Paula. “The very next week I scheduled an appointment for Thea at ACTG’s vision department.
Thea received a complete eye exam and then a developmental evaluation in order to identify visual integration problems. The results clearly indicated that Thea had difficulty processing visual material. Thea’s parents decided to enroll her in ACTG’s vision therapy program.
She received individual vision therapy throughout the following summer and during the first several weeks of second grade. Paula recalls, “The staff that worked with Thea were incredible! They bonded with her and were able to bring out the best in her in a very nurturing way. She began to happily look forward to her vision therapy. Her gains were becoming more evident and each accomplishment of hers was celebrated along the way.” Despite Thea’s gains, her mother witnessed something even more amazing.
Thea, who had struggled to print her name legibly, began writing short stories for everyone to enjoy! Here was a young girl who had struggled to read the simplest of primers, who began checking out chapter books from the library. As the new school year progressed, Thea was up to grade level work in all areas. “Her special education teacher told us that it was a special, but rare treat to release a young student from special education during the elementary years”, remarked Paula. “The teacher told us that it is incredibly rare to have such a young child make as much progress as Thea had done in such a short amount of time.” It was clear that the vision therapy played a major role in her success.
Her mother concluded by saying, “We are all so proud of Thea and so thankful for the people at A Chance To Grow. They have helped her become the audaciously, securely intelligent child that she is!”