‘No child is left behind’: Mother, advocate provides resources for Somali American children with disabilities

The tablet and training were thanks in large part to Asha Abdullahi, founder and director of the Somali Parents Advocacy Center for Education, an organization that helps Somali parents of children with disabilities obtain the education, health resources, and mental health support they might otherwise lack because of language barriers and stigma around disabilities.

A Roxbury branch of the Roslindale-based center, which started in 2019 and serves more than 100 local families, will open this month, according to Abdullahi. Like the Roslindale location, it will provide an array of programs including health and literacy curriculums for parents, nonclinical mental health resources, educational conferences, and assistance accessing resources in schools and hospitals, Abdullahi said.

Such resources could include communication tablets such as the one Osman and her daughter received, Individualized Education Program documents, or speech, behavioral, and occupational therapies. SPACE also helps families navigate paperwork to access school and government disability services, an already tricky process made more difficult for families who speak minimal English, Abdullahi said.

“No child is left behind,” Abdullahi said. “If your child gets diagnosed early, connect them to services. They can improve.”

SPACE also holds cultural gatherings to foster community, including an Eid al-Fitr event in Dorchester held on April 13 to celebrate the end of Ramadan.

Dr. Carol Weitzman, co-director of the Boston Children’s Hospital’s Autism Spectrum Center, said obtaining resources can be “treacherous,” the system fraught with complications, waitlists, and inconsistencies.

“If you are an immigrant family and you don’t really speak English, it’s a really complicated world, to get services in the autism space,” Weitzman said.

Abdullahi encourages parents to pursue evaluation at a young age to access Early Intervention, a state program for children up to 3 years old who show signs of developmental delays.

Abdullahi knows firsthand the importance of being evaluated early on. Her own son, Adam, was diagnosed with autism at 8 years old. She noticed warning signs years earlier, but wasn’t aware of programs like Early Intervention and was advised by friends and family not to worry.

By the time Adam was evaluated at Mass General Hospital, where Abdullahi was working as a surgical technologist, it was too late. The period for Early Intervention had passed, and instead Adam headed into school without tailored support, causing delays and complications in his grade school education.

“The school will only help your child if they give them identification,” Abdullahi said. “But without getting that evaluation, you don’t get the services.”

Adam eventually excelled in school, after second grade when the family moved from Malden to Everett, meeting teachers and classes more conducive to his learning style. He is now nearing graduation from the Massachusetts College of Art and Design.

But Abdullahi felt there was more that could be done. She wished she knew to seek evaluation earlier on, and that she had a network of parents to lean on, people going through similar experiences with whom she could share her concerns.

“I didn’t have that,” Abdullahi said. “That did not exist in our community.”

So, she created SPACE. It started in 2016 as a parent support group, a handful of Somali parents in the area who had questions about their children’s behavior, the evaluation process, or why the school wanted them evaluated in the first place. They held meetings in each other’s homes, where Abdullahi shared her experiences and helped others seek out evaluations, diagnoses, and the resources that follow.

The group met regularly, Abdullahi said, continuing to grow in size as word spread throughout Boston’s Somali community. Meanwhile, Abdullahi received training in disability advocacy and policy through fellowships with the Boston Children’s Hospital’s Leadership Education in Neurodevelopmental and related Disabilities program, the Institute for Community Inclusion, and the Maryland-based Association of University Centers on Disabilities.

Then, in 2019, Abdullahi opened the center — just in time, she said, for the COVID-19 pandemic, which heightened families’ need for support. She gave parents at-home computer training and helped them craft emails in English to their children’s schools. She applied for grants to provide families with tablets and offered workshops over Zoom.

Through SPACE, Abdullahi helped families like Osman’s build relationships with staff at their children’s schools. Now, Nasteho’s teachers call Osman with periodic updates.

“I never had that before I met Asha,” Osman said. “We have someone we can count on that’s able to connect to us all the resources that we are not aware of.”

Abdullahi also assists families with the state’s Individualized Education Program, which provides services specific to a given child and disability.

“Every child is different,” Abdullahi said, “even though they might have the same diagnosis.”

Fatumo Aden, another SPACE parent, said individualized programming has had an immeasurable impact. When her daughter, who is 8 years old, was diagnosed, Aden had never heard of autism.

“They were providing services at school, but I didn’t know what it was. I didn’t understand it,” Aden said in Somali through a translator. “[Abdullahi] explained in a way that I understood.”

Abdullahi helped Aden obtain an in-home applied behavioral analysis therapist, who helped establish a routine for her daughter.

“That’s when I started understanding more of what autism is and the care that I need to be giving my child,” Aden said, adding that she now feels more connected to her children’s schools, her community, and the health care system. “I wouldn’t have known all these resources for my family if it wasn’t [for] SPACE.”

Families deserve access to “all the information they need,” Abdullahi said, with education and health care providers who understand their language and culture.

Weitzman, the co-director of the Autism Spectrum Center, said culturally specific resources like SPACE can help parents feel more comfortable and act as “cultural brokers,” bridges connecting families with the care they need.

And Abdullahi is building those bridges.

“We are a resilient community. We’ve been through a lot. We survived a civil war,” Abdullahi said of Somalis in the Boston area. “We are dealing with a new country, new culture, a new generation who are trying to balance both.”

Madeline Khaw can be reached at maddie.khaw@globe.com. Follow her @maddiekhaw.