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.