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Fighting the stigma: Resident wins award for raising autism awareness



Monday, June 08, 2015

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Raising children comes with a wide range of challenges. But raising four children — two of which have autism can come with a whole different set of challenges that could become overbearing especially if you weren’t able to speak to anyone about what you were going through.

Savage resident Marian Ahmed is no stranger to the feeling.

Married in 2003, Marian had her first child in 2006 and now has four children: Asmaa (9), Ayub (7) , Anas (5) and Adna (3).

They’re happy children in a home with a loving mother. The only difference between them and seemingly any other family is that Ayub and Anas also have autism.

SHAMED AND AFRAID

In Ahmed’s Somali culture, intellectual and developmental disabilities are often viewed as a stigma, or as a curse.

“My first child [with autism, Ayub], I kind of hid. I thought I could manage on my own, and that’s when I started hiding myself from everybody else. I didn’t want anybody to come to my house,” Ahmed said. “It was difficult for me in our community. I try to talk about it and everybody thinks ‘That’s weird.’ For our culture, having children with disabilities is like you’ve been banished by God, you have done something bad. It’s scary to let anybody know that you have a child with autism because you’re scared of so many things.”

The toll of keeping her secret began to mount on Ahmed — not only emotionally, but physically as well.

“It was hard for me. I was depressed. I had a headache all the time. I was not eating,” Ahmed said. “I lost 60 pounds. I was so little.

“I hated being asked ‘What’s wrong with your kid?’ It was very hard to sit down and express that my son has autism in our community,” Ahmed added. “I’ve seen a lot of mom and dads who don’t even want to get help because of it.”

After the birth of her third child, Anas, Ahmed once again found out that she had birthed a child who would have autism.

Finally Ahmed contacted family back home and told them about what was going on, and how she was struggling. They told her that she was not alone, and that she needed to let other people know.

“When I had my third child and I found out again that he had autism, I first tried to hide it,” Ahmed said. “But then I decided I cannot hide anymore.”

Ahmed became proactive in looking for help to give her sons the best life possible. She told her doctors the truth about Anas’ measurable progress (previously she had been lying). She also sought out Applied Behavior Analysis (ABA), a widely-accepted therapy for children with autism, for both Ayub and Anas.

But most importantly, Ahmed finally decided speak up.

CHANGING ATTITUDES

At a 2014 Autism Day event, Ahmed met Bahjo Mahamud — a recent University of Minnesota graduate who had begun working with The Arc Greater Twin Cities as a Somali Arc advocate.

As a result of their budding friendship, Ahmed began to work with The Arc Greater Twin Cities once a month as an advocate for the Somali community to help further understanding and education of autism and other developmental disabilities.

“Most of the families call us and say ‘I have a child with autism, what can I do?’” Mohamud said. “Our goal is to educate, empower, and to make the parents involved. By doing that, we’re not hand-holding parents all their life, because they are going to be taking care of these children. We don’t want to do things for them, we want to do things with them so that they’re learning along the way.”

Early intervention is a focal point in the eyes of both Ahmed and Mahamud. They don’t want parents to hide their children out of shame or fear of the community’s reaction like Ahmed once did.

Over the past year, Ahmed’s continuous efforts were recognized by Mahamud, and discussed among other colleagues at The Arc. Little did Ahmed know that she had been nominated for an award to be recognized for all of her courageous efforts.

On May 1 at the Hilton Minneapolis in Bloomington, Ahmed was presented with the “Changing Attitudes” Changemaker Award at The Arc’s “Volunteer Celebration and Annual Meeting.”

The annually-awarded Changemaker awards recognize individuals or organizations for making a difference for people with intellectual and developmental disabilities and their families. The “Changing Attitudes” category recognizes those who positively change public perceptions of people with disabilities.

Bahjo says that Ahmed perfectly embodies the spirit of the award.

“It took a lot of courage for her to speak about her sons,” Mahamud said. “We wanted to make sure that she gets credit for helping change attitudes within the Somali community. Because of her, now others are not ashamed to share their stories.”

Humbled by her recognition, and grateful for her new-found place in life, Ahmed is optimistic of what the future has to bring.

“This award shows me what I can do. I didn’t know I was that important to so many people,” Ahmed said. “I have so many dreams. I am so thankful for this change.

“When I go to bed, I feel good. I helped a person, instead of hiding. When you do good things, God will reward you either way. I feel so good.”



 





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