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Autism Awareness Month: How families are coping through pandemic

Families who have relied on autism resource services have had to improvise & provide learning & care at home.

CLEVELAND — April is Autism Awareness Month and families directly affected by the pandemic, are faced with uncertainty about services for their loved ones. 

There are questions, like: "Am I doing enough?" "Will my child have a setback?" "Will they get sick?" 

It's a fear, only their tribe know firsthand.

The Gedeon Family sought guidance from local support groups right away when their daughter, Cora, now 14, was first diagnosed with autism.

“Cora maybe wasn’t speaking the vocabulary or the sentence structure ... maybe as much as the typical child," Carrie Gedeon said.

Diagnosed at three years old, at first, her parents weren't sure where to turn.

“I think every other time I've been to the doctor and you know, something wasn't where it should be. I've always gotten a prescription. You fill the prescription, you follow the doctor's advice, but when it comes to autism, there's so many resources, so many different avenues to take. It can be a little overwhelming," Carrie said.

Then they found Milestones – an autism resources group. Immediately, they felt less alone.

"You know, everyone else there is in the same boat as you are. So, if someone has a meltdown, no one, no one's concerned with it, no one's bothered by it," Mike Gedeon said.

Knowing the tools and the support is key. Yet, when the Coronavirus pandemic hit, families experienced disruption in their normal services. Now, they're trying to figure out how to move on, and wonder if it's enough.

“I look back and think that if this had happened when my son was really young, I think I would have been in much more of a panic because all you're focused on at that age is that early intervention, and you're thinking to yourself, 'Oh my gosh, I'm not getting their intervention, and he needs,'" said Laurie Cramer, Executive Director of the Autism Society of Greater Akron.

Cramer's 19-year-old son has autism. She shares the same concerns as other parents about what she would do if she or her son became infected.

"We always need to remember that we've got to bring it to people's attention and then that's going to help us feel some sense of control. I have asked the question, maybe they haven't thought of this yet because they're thinking of 50,000 other things, but we are thinking about these things ... about what happens if they get sick? Or what happens if we get sick?” Cramer said.

The fear is real, but autism support groups want families to know, help is still out there -- even if it looks, and feels, a little different.

“All of the resources and supports that our family has traditionally used, a lot of those have moved over to teletherapy," said Beth Thompson, program director of Milestones. “Our support groups for example, are being done mostly virtually. So even though you're not going to the same location to all meet face to face, you're still able to connect with other parents that are struggling and coming up with unique ideas, and share how your family is finding their new normal," Thompson said.

And that new normal? It might be for parents to give themselves some grace.

“Some forgiveness for the fact that we're juggling a lot of things right now. It's going to be important to our mental health, as well. And, we can't take care of our kids if we don't take care of ourselves," Cramer said.

Another tip: Focusing on one issue at a time.

"I think we're going to go back to: Let's all take a step back and take a deep breath. This is what it is. We cannot control this crisis," Cramer said. “I think a way to feel some sense of control is going to be to pick one area where you feel like you are really worried about. Is it reading? Is it math? Just identifying objects, whatever that might be, and say, 'I'm going to really try to focus on this because this is what I can do,'" Cramer said.

There's also a free help desk at Milestones where parents can turn to, for just about anything.

“I need a blank. I need a doctor. I need a therapist. I need help finding a job. Then they're connected with one of our consultants, one of our help desk workers, that will provide some customized resources for them and help them navigate those resources,"Thompson said.

Cora, is thriving. She calls herself "awesome." And, her family agrees.

“Oh, I'm just so proud of her. She's just awesome," Carrie said.

For more information on Milestones, click HERE.

For more information on the Autism Society of Greater Akron, click HERE.

For more information on Autism Speaks, click HERE.

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