Says Darla, a S.M.A.R.T. Steps provider in Sleepy Eye, Minnesota: “A lot of the things I knew in the back of my head, but I just wasn’t putting the two together, like how it was actually helping the child with little things, like sitting or focusing. Knowing that this is really helping my kids in the long run of their lives, and how it can be useful even for me to do, it’s just so positive!”
​
LaDonna, another provider from Sleepy Eye, says her kids love the activities and are now doing them every day. “We like to do stuff all the time - fine motor, gross motor, at least a taste of it every day. And it’s easy for me because I’m not using a big curriculum,” she says. “When we make our projects or read our books, we can get it all put together quickly, no problem.”

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.

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.”

​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.”