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A Chance To Grow is committed to providing services to those who need them the most. Sometimes, that means partnering with an agency that focuses on meeting the needs of a specific population. For example, we knew from the research and from our own experience that the Somali community has higher rates of Autism Spectrum Disorder (ASD) than other groups, but that there were barriers – language, culture, or transportation – that prevented parents of these children from getting services. So in 2019, we began a partnership with ISKA, Inc., a Somali-owned community service organization. It was founded by Ifrah Hudle, a human service professional who recognized that Somalis not only have a very high prevalence of ASD, they also have to deal with barriers to getting help.  ISKA Inc., located in St. Louis Park, has a staff of 25 that works with children from birth to age 21. They currently see about 30 children a year, but hope to expand that to 50 to 60 in the future. When it opened in 2016, ISKA offered an adult waiver program where they could help disabled individuals in their homes. However, says Ifrah, “After a year or so, we saw that a lot of clients, especially younger ones, were getting diagnosed with autism and other developmental delays. We knew that our community was not getting the services they needed due to lack of communication and transportation, so we wanted to make it a one-stop shop for our clients.” Ifrah heard about A Chance To Grow at one of the Charter schools to whom we provide services and reached out to us. Working together, the two organizations developed a program for Somali children that combines behavioral and developmental approaches. The young clients receive EIDBI services from ISKA staff that include targeted interventions designed to improve behavioral challenges and self-regulation, cognition, functional communication, learning and play, safety, self-care and social/interpersonal interactions. This helps the children regulate behavior and reach developmental milestones. They also receive Speech/Language and Occupational therapy from ACTG staff. The occupational therapy helps them work on their cognitive, physical, social and motor skills, with the goal of fostering independence. The Speech/Language therapy addresses challenges with communication by improving their verbal, nonverbal and social communication. This more intensive approach is necessary. According to Ifrah, “There are high numbers of Somali children with autism here and most of them are further along the spectrum. In Somalia, there isn’t a medical word for autism. So when they come here, most of our clients have some idea that there might be something wrong with their child. A mother would call and say ‘my son is not talking, I think my son may have these signs, can you help me?’ But most of them don’t know how to read or write, some of them have very large families, so it’s hard for them to search for what they need, to understand what they are missing, what they are entitled to in terms of services, and how to get to them. So we partner with the mother or father or caregiver to understand the family needs, we help them set up schedules and routines, make appointments, help them with insurance and so on.” “Our main goal is to help families bridge the gap to services they deserve in a way that respects and upholds Somali culture and Islamic practices,” says Ifrah. This involves, in part, helping families navigate barriers to receiving care. “Children usually have the initial diagnosis from their doctor, but this often presents problems. Office visits are too short for doctors to really get to know the child, particularly if language is an issue. Many parents say that at the first visit, doctors don’t take their child’s symptoms seriously, or they misdiagnose them, or prescribe the wrong medication. The mothers get discouraged and don’t go back. I tell them, stay with one doctor, give them a couple of sessions with that individual before they label or diagnose. I want medical professionals to really listen to our clients. I tell all the doctors that visit, this mother has a Ph.D. in her child, nobody knows this child more than the mother.” Another barrier is access to transportation. Many families have difficulty finding transportation that meets their needs, particularly when their children have a hard time adjusting to strangers. Ultimately, says Ifrah, “We partnered with a couple of Somali transportation companies so that children will become familiar with one person. They call the driver Abti (Somali for Uncle), they know he will wait for their mother and will not call the police on her just because she’s late.” It was also vital to establish an environment that honored cultural and religious practices. “For Somali clients, it’s mostly based on religion,” says Ifrah. “We follow Islamic beliefs and customs, we follow dietary rules, so they come to us knowing that we guarantee our space will not have anything that they are against.” This creates an environment of safety and trust. Says Ifrah, “We have a client who’s about 7, she used to go to a mainstream agency, but now she comes to us. Her mom told us that every time she knows she’s coming here, she puts on the headscarf. When she’s gone to mainstream schools, she takes it off. Her grandma says I know that this is the right place because every time she’s coming to you guys, she puts on the headscarf. The kids feel like they could assimilate with us. They look like us, we look like them, they feel much closer to us.” Says Michelle Koyama, the Assistant Director of ACTG’s Clinical Services who coordinates all care at our partner sites. “We talk a lot in the field about how best practice is to give client-centered care. ISKA giving the children a space that they feel is theirs helps us reach that goal.” According to Michelle, this actually strengthens the bond between ISKA and ACTG, whose on-site clinicians are not Somali. “What I appreciate about ISKA is that the staff makes it feel more like a community than a program. There was a child, 4 years old when we started, who didn’t have a means for expressing herself to strangers. At ISKA, she could see how other people she trusted, trusted us. For example, there was a day when her mom came in to see the session and the girl witnessed the three-way conversation between the ISKA staff, her mom and I, in both English and Somali. It was really evident to her that we were a team that all cared for her. We were able to go much deeper in conversation than what is typical with an interpreter, and that allowed our relationship to be more therapeutic faster. After that day she would often pause for a moment in therapy and say "you know my mom.”  In Somali, the word “iska” means “to belong,” to “have a sense of self.” Between the combined therapeutic approaches and the nurturing environment, this program has a tremendous impact on its young clients and their families. Michelle describes the impact on one young girl: “She first came to us at age 4. She had very little awareness of her environment or how she interacted with it. She could not even hold a crayon, let alone draw a picture, she was unable to see detail, draw recognizable shapes and so on. She’s 6 now, and she’s able to hold a crayon or marker in a functional way. She recently gave me a picture of herself. It has details, like her arms and legs and eyes, it has butterflies and flowers, it has dimension. The picture shows an awareness of self and she’s even created a safe space for herself in it.” In a sense, the drawing demonstrates how, through her progress there, the child embodies the spirit of ISKA: She has found a place where she belongs and there, she has begun to have a sense of self.
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“As a kid, I had a harder time reading,” says Leah, a veteran educator currently with the Eau Claire, WI school district and a long-time S.M.A.R.T. advocate, whose passion for teaching and love for her students are palpable. “And I want to do everything in my power to prevent others from struggling.”
After several years in the classroom, Leah found herself in a position to support other teachers – as an educational consultant, instructional coach, literacy coach, Title I teacher, among other roles. While teachers were telling her that student behavior was their biggest problem, as a literacy coach and Title I teacher, she noticed that many children were having reading issues. “I had several kids, I could actually see their eyes doing different things on the pages, or they’d look at me and their eye would bounce, and I thought ‘something is going on there.’” Then she attended a training for a movement-based program that dealt with dyslexia. Her original teacher training had included very little about brain-related issues or the importance of movement to development. This new perspective changed her. “I started telling parents, ‘you might want to get their eyes checked, I’ve been noticing some things’ and parents wrote to me to say, ‘There was an issue, thanks for telling us!’ I thought, this is knowledge that everybody needs to have. It’s great and more students could be helped.” Several years later, when she attended a three-day S.M.A.R.T. training, it was revelatory: “Every time I heard a story I thought ‘oh, that was that kid.’ I remember having an a-ha moment: They showed us how the alligator crawl is really good for reading comprehension, and I thought, ‘why have I not been doing this the whole time with the struggling readers?’”
Movement Anchors Learning! Movement influences the ability to concentrate in a classroom and to learn to read and write. The body is designed to move. Research shows purposeful, specific, and systematic physical movement can affect the brain in a very positive and dramatic way. Physical activity helps create an optimal learning condition for the brain by:
Leah began to advocate for all teachers in the district to incorporate S.M.A.R.T. into their classrooms. Last year, district administrators went all in, arranging for all teachers and assistants to get trained. “The first time through the training, some of [the teachers] said, ‘oh my gosh, I thought this kid was doing this because they were misbehaving but really, they had this sensory or auditory processing or vision issue.’ They started to see behaviors differently, which I think is amazing.” Her S.M.A.R.T. training continues to inform her practice. When her colleagues say, “This child has ADHD” she asks, “’Have you tried spinning? Or balancing? Or pencil rolls? Let’s start with some of those.’ I say to parents, do you ever notice them spinning? And they say ‘yeah.’ And I say, ‘let them, they need it, their bodies are telling them they still need to move.’”
“I have probably three or four kids with high behavioral needs. One of my little guys used to have really large emotions and now you wouldn’t really recognize him. Does he still have moments? Absolutely, we still have to work on it. However, he’s really calmed down quite a bit. His mom said, ‘oh my gosh, he has improved by leaps and bounds.’”
“We are a container society, we are putting our kids in car seats to highchairs to bouncy seats and they are never getting those experiences on the ground, and those experiences are the ones that lead to academic success. We should tell parents ‘Don’t rush them, there are a lot of stages we try to rush through, and quite honestly they need to be on the ground moving.’"
For parents of older children that are having problems academically or behaviorally, Leah says, “There’s a lot of brain-based activities that we can be doing, even at upper levels. My favorite video to show people is The Brain Highway, because there’s always someone who says ‘oh, yeah, I get it!’ when they see it.” 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.” |
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