Linda Nesenson has been part of A Chance To Grow’s family – and we’ve been part of hers – since 1994. Her journey mirrors ours, as this story demonstrates.
Linda’s second son, Matthew, born in 1988, began having issues with focus and hyperactivity as a toddler. By the time he was in kindergarten, the impact was obvious: “He was so overwhelmed with everything that was going on,” remembers Linda, “he would just laugh and laugh, he didn’t know what to do. He would go full force and conk out.” He was so disruptive to the class, he spent half the day in the hallway on a chair because they didn’t know what to do with him.
By the time he was six, his pediatrician had diagnosed him with ADHD and had put him on Ritalin. “It wasn’t doing anything, so they just wanted to keep upping and upping the dosage,” recalls Linda, “so he developed a tic, eye blinking, and I said, ‘no, we’re not doing this.’ The saving point came when I saw a flyer advertising the Boost Up Program.”
This was being offered by New Visions, ACTG’s alternative school designed specifically to help children like Matt who had trouble learning. As part of his enrollment process, Matt received a number of assessments he’d never had before. “His pediatrician never asked me, ‘did he crawl on his tummy, did he creep on his hands and knees?’ I had no idea that was important. I had taken him to the eye doctor to have his vision checked and they would tell me his eyes were healthy and that he had 20/20 vision, but at New Visions, where they did the telebinocular screening, I learned that he had depth perception problems and his pinch grasp was very weak, which explained playing catch and holding a crayon to color was of no interest.”
At the time, New Visions offered the occupational and vision therapy Matt needed in addition to the Boost Up program, so Linda enrolled him there in 1994. Like Matt, his cousin Ryan was also struggling and he was also enrolled in the school. Her cousin was a paraprofessional in the 1st grade, where Matthew and Ryan started. Linda soon started volunteering in the classrooms, and was ultimately hired as an educational assistant in 1998. Her sister, Ryan’s mother Teresa, came to work in the school office shortly after. When New Visions school came under the umbrella of ACTG and moved to the current location (later in 2003), her husband Gary came to work as a janitor, and so the family affair continued.
At the time, New Visions was housed at St. Bridget’s and offered Boost Up for children in grades 1-8. Students went to Boost Up five days a week as part of their daily schedule. There, Linda knew Boost Up was where she wanted to be. The success of the program with those students led the staff to consider ways to bring the program to more children. Hence the Minnesota Learning Resource Center, and the S.M.A.R.T. Program (Stimulating Maturity through Accelerated Readiness Training) came into being. Designed to easily incorporate the Boost Up approach into K-3 and Pre-K classrooms, the program has trained thousands of teachers in Minnesota and across the country, providing countless children with the brain development needed to succeed in school and beyond.
Matthew stayed with the program through the fifth grade. In addition to occupational and vision therapy, Matt and Ryan received brain training via Audio-Visual Entrainment (AVE), which helps people self-regulate emotions. Both boys began to improve. “Matthew could handle the group situation, he wasn’t sitting in the hallway, he just got more engaged, more involved in what was going on, he could read, he was learning, he was calmer.” Linda recalls that Matt’s kindergarten teacher had predicted that he would never be able to read. After he had been at New Visions for a while, the paraprofessional took him back to that teacher’s room, and said “Matthew would like to
read something for you.” And he did.
Today, Matthew is grown up, steadily employed at a local store for the last seven years, and the father of four-year-old Xander. “If it wasn’t for my experience with New Visions, with A Chance to Grow, I would not have been able to recognize early that Xander had challenges. “First thing is the speech, he wasn’t saying words and he’s not playing like a neurotypical toddler.” He was diagnosed with Autism, low on the spectrum and sensory seeking. She told Xander’s mom that she should bring him to ACTG for an occupational therapy evaluation. Today, Xander is receiving speech and occupational therapy at A Chance to Grow.
While Matthew left New Visions for middle school, and has since gone on to lead a wonderful life, Linda remained at ACTG. It was her second career, after spending 25+ years in the telephone answering service, but, she says, “Boost-Up became my first love.” Over the years, her involvement has grown and changed, just as the agency has. Eventually, she also worked for the AVE program, Vision program, and as it expanded, the Clinical Services department as a clinical assistant. She has never formally retired because, as she says, this has become a family affair too. “The people here, they mesh so well together. I think it’s because the love and dedication they have in helping children be successful is a common goal. She says, because of that shared goal, “the staff is like family, too.”
A Chance To Grow provides a wide range of services designed to help people at all levels of ability reach their optimal growth. Our focus on brain function affords us the opportunity to offer many approaches that are designed to complement each other and improve quality of life. One family has been with ACTG since its beginnings, and their journey with us – beginning with Boost-Up, the program that is the basis for most of our programming, to clinical services, to PCA services. Their story provides insight into the impact of everything we do.
When ACTG began to explore the use of neurofeedback, a brain-training approach, Michelle was excited, and before long, she launched what became our Neurotechnology Program.
What is Neurotechnology?
What are Home-Based Services?
Michelle has made sure that her son and grandchildren participated in everything ACTG had to offer them. “Scott had auditory therapy, vision therapy and speech/language therapy here. Mike and Kyrie too, and also OT. And Summer Boost-Up.” She also made sure they got a lot of neurofeedback. “I think it built more brain pathways. All the things ACTG does is trying to encourage brain pathways, Neurofeedback was one way to try that.”
Scott, Michael and Kyrie will always have challenges, but the therapies received thanks to Clinical Services, Home-Based Services and Neurotechnology have had a substantial impact. Scott initially was very slow in speech, and while he still has trouble, his ability to pick up vocabulary increased. Michael, who was visually impaired at birth, has improved, thanks to the stimuli provided in vision therapy. Both Michael and Kyrie thrived in good school programs and continue to learn. ACTG helped all three build the foundation for continued growth. “You say ‘developmental delays’ but I say ‘delay.’ Because they are still making strides,” says Michelle.
Because of her experiences providing Boost-Up, Neurofeedback and PCA services for her family, Michelle does not think about them in terms of their limitations. “If you have a child with a disability, you have to use their strengths.” She notes, “It’s just a matter of standing back and giving them room to be who they are. Talk to them, give them the opportunity, that’s really important to them. Respect different ways of knowing, give them the opportunity to learn.”
When he was in school, “Scott was so curious about so many things that I could never get anybody to understand. He couldn’t read the stuff, he couldn’t take the test, but he learned. He learns by listening. He had all these difficulties with our traditional ways of getting information. For example, he can look at a number, he can’t tell you the name of that number, but if I were to put a 5 and a 3 on the paper, he couldn’t write the 8, but if I put 7,8,9 underneath, he could circle the 8, he knew the concept. It’s the same with letters. Now he is a fount of information, he learned to get himself around the Internet without being able to read and write. Now he’s reading better than he ever has.”
Like Scott, Mike and Kyrie keep on growing and learning, albeit in nontraditional ways. They love sports and have participated in Special Olympics, honing their skills with hours of practice. Kyrie, now 18, is still in a project-based school that allows him to explore his natural interests at his own pace, and where he can stay through transition. Mike, now 27, is interested in cooking. As with Scott, he knows a lot, but is less communicative than Kyrie. “His receptive information is much more than his expressive,” says Michelle.
Thanks to ACTG’s Clinical and Neurofeedback Services, all three have continued to make gains, and thanks to our PCA services, they have been able to do so with the love and support of those who know them best, exploring the world around them and enriching the lives of everyone around them.
Oliver is a happy, smart and creative eight-year-old with endless amounts of energy. He and his mom, Annie, first came to A Chance To Grow 18 months ago to address a myriad of physical and emotional development concerns.
Early in Oliver’s life, Annie observed some unusual and worrisome behaviors. “From the time he could walk, he was falling down or crashing into things,” she said, “He’d walk on his toes and I didn’t know why.”
“He had a great experience in preschool,” said Annie. “He was performing well in a school environment, he made friends and his teachers didn’t raise any serious concerns about his behavior or speech delays.” Despite this, Annie and her husband were still concerned with his communication issues and began seeking help.
They decided to have him tested by a Speech-Language Pathologist (SLP) prior to beginning kindergarten to see if he could qualify for special education services through the school district. The SLP who conducted the test didn’t hear what Annie heard and recommended that he not receive speech therapy. It was the first of countless obstacles in the family’s search to get help for Oliver. A second test, with a different SLP, found that he qualified for an IEP, and at the age of five, Oliver began weekly speech therapy sessions.
“Kindergarten was OK for Oliver. His teacher knew how to head off his meltdowns, and he started physical therapy to help address his balance issues,” Annie recalled, “But there were red flags. I saw attention and impulsivity problems, no eye contact, and perseveration issues (the repetition of a particular response).”
At the end-of-the-year IEP meeting, she fully expected the school’s administration to recommend Oliver be evaluated by a doctor. To her surprise, the administration unanimously confirmed he was ready for first grade. Annie was thrilled, but intuitively, she knew something was still off.
Annie was a teacher at the private school Oliver attended. “He was starting first grade and I had my dream job and things were looking OK,” she said. “But that’s when the storm hit. The demands of first grade were beyond what Oliver was ready to take on. Our school didn’t have the resources to provide support for Oliver or for his teacher. Because of his frequent meltdowns and he’d often spend his days in the principal’s office.”
Meanwhile, Oliver’s physical therapy progress ground to a halt. His therapists would have him do activities that were not developmentally appropriate, like throwing and catching a ball, and Oliver simply stopped participating because he couldn’t do it.
“His first grade teacher commented that Oliver wasn’t comfortable in his body,” said Annie. “She was right. Something was wrong, but we just didn’t know what it was.”
During the turmoil, a family friend named Jo Gascoigne suggested Annie look into an organization called A Chance To Grow, where Jo once served as a board member. Jo introduced Annie to Julie Neumann, MA/OTR/L, Director of Outpatient Services at A Chance To Grow, and together they discussed Oliver’s symptoms, health history and current predicament. “We discussed several options including modifying his school day, moving to a different first grade classroom, or returning to his former kindergarten class. They recommended Oliver regress back to kindergarten because he wasn’t developmentally a first grader yet,” said Annie.
They explained that Oliver’s wild behavior was caused by a sensory processing disorder, meaning his brain was having trouble receiving and responding to information coming through his senses; specifically his proprioceptive system. His body’s way of seeking sensory input from his environment was causing his behavioral outbursts - he was unaware where his body was in space.
“They told me about MNRI and how integrating his reflexes could build a foundation to overcome his emotional and physical delays, but it would take time,” said Annie.
Time wasn’t on their side. Almost simultaneously, Annie and her husband met with Oliver’s teachers and school officials to discuss their options moving forward. They proposed the regression to kindergarten and were hopeful when his former teacher agreed, and the administrators and counselors gave their consent. The administration asked Annie to keep Oliver at home for a few days while they discussed the details of the transition.
It appeared as though everything would work out, until his kindergarten teacher changed her mind because she felt that Oliver was too smart for kindergarten. She was also concerned about the social-emotional impact that regression could have on Oliver and his peers.
What followed were three difficult weeks in which Annie and her husband fought to keep Oliver in school. “It was a fiasco,” she said, fighting back tears. “He was out of school the whole time and his self-esteem was so low. He thought he was naughty. He was afraid he wouldn’t get to learn subtraction. It just broke my heart.”
Oliver was too smart for kindergarten but not physically or emotionally ready for first grade. What could she do? She did what was best for Oliver - she pulled him out of school and quit her job. She didn’t know what school he’d be at or what grade he’d be in, but she knew she had found A Chance To Grow -- a place that understood what Oliver needed to get better.
“The staff said, it didn’t matter where Oliver was at developmentally, they would work with him,” said Annie. Shortly thereafter, she enrolled Oliver back into kindergarten at a new school, left his old therapists and began coming A Chance To Grow twice weekly. “They were so willing to meet Oliver where he was developmentally and knowledgeable about what he needed to move forward.”
Oliver’s OT, Alyssa, addressed his basic reflexes at first, but quickly noticed he could also benefit from speech therapy to improve his social language skills. “She referred us to Carly, who saw what I saw during the evaluation - poor articulation, no eye contact,” said Annie. “Oliver knew he wanted to sound better, so we immediately began speech therapy to help him better communicate his needs at home and in school.”
Carly works on what triggers his meltdowns, practicing expected behaviors in a safe environment by building and scaffolding his social skills. “He used to be scared to lose and it would trigger a meltdown, but he’s learning how to handle that frustration and manage those social situations,” said Annie.
During Oliver’s sessions, Alyssa demonstrates techniques for Annie so she can work with him at home. They work for 30 minutes almost every night on his grounding reflex, helping him to feel more stable, both physically and emotionally. “Once he knew where his body was in space, he stopped falling down,” she said. “There were a few days when we didn’t do the activities and he became restless and couldn’t sleep. He asked me to do some body work and in no time he was back in bed.”
Throughout the first six months at A Chance To Grow, Annie witnessed many breakthrough moments that proved they were in the right place. “Our little dog Maggie used to be terrified of Oliver, but now she comes up to him and he’s able to hold her. It’s just amazing. You can’t be skeptical when you see progress like that.”
Annie says that one of the best parts is that everything he needs is under one roof. “Everyone is working together to help Oliver, sharing information on all aspects of his treatment plan. It’s just such a different approach from the other places we’ve been. It’s become a safe space for all of us.” Annie has also attends A Chance To Grow workshops, including S.M.A.R.T. training, to further her own understanding of what Oliver is going through and how she can help him continue making progress.
As for school, Oliver completed kindergarten and moved into first grade this past year. At a recent parent-teacher conference, Annie asked about his meltdowns and the teacher had no idea what she was referring to. The teacher thought Annie was talking about a different student!
These days, Oliver is able to do many activities he couldn’t do even a year ago, like riding a scooter without falling, throwing and catching a ball, and hanging on monkey bars - not because he’s practiced these activities, but because they’ve built the foundations to be able to advance his balance and motor skills.
“It’s been a really long journey, but he’s the best he’s ever been,” said Annie, “It’s been absolutely life-changing.”
It can be hard for parents or educators to fully understand the difference between the developmental age of a child and his or her actual age. We have expectations of how children should behave at certain ages, and when these expectations aren’t met, adults can often respond to the situation with the child’s actual age in mind, discounting where the child is developmentally.
The right therapist and approach can make all the difference when it comes to helping children reach their full potential. “If you want to learn how you as a parent can help, then this is the place. The wealth of knowledge and resources they provide are amazing. We love being here and we’re all much happier.”