Midland’s Theresa Fletcher has been raising her son, who has a disability, silently for 21 years. She said being a parent of a kid with a disability can be overwhelming, lonely and isolating.
But when she found out about 1in6 Support, a group for the parents of children with disabilities in Midland, she joined it. Her goal was to share her experience in the hopes that other parents won't wait 20 years before they are heard and seen.
“In some way, it’s like having a baby forever, where they’re totally dependent on you,” Fletcher said. “You need to dress them, you need to comb their hair, you give them their bath and feed them, and that’s forever, and so it’s a lot more time consuming.”
Iris Mehler, the co-founder of 1in6 Support, said parents of children with disabilities deserve more attention, comfort and connections that break the cycle of isolation.
“Having a child with a disability is a life-altering event,” Mehler said. “And our community, our society as a whole, is not quite ready yet to provide the parents the support mechanism that they need to help their child with a disability thrive. There is an expectation sometimes for the parents to take care of anything and everything. And the task is daunting.”
Mehler knows this experience first-hand. Her daughter has quadriplegic cerebral palsy, a severe form of paralysis that affects the whole body. She has a wheelchair and screens that help her communicate. She was also able to create her own language by drawing with her eyes when she was a child.
“Instead of just studying a phenomenon that is so rare in language development, I think we, as a society, focus not on ability, but on ... disability,” Mehler said. “It didn’t matter how brilliant she was and how amazing this achievement is linguistically; it was insane, it was beautiful.
“I hope for our society ... to see those adults with disabilities and to learn from them, to see how we can integrate and collaborate knowledge from their unique life experiences and make our society a better place for everybody.”
With her support group, Mehler brings awareness of people with disabilities and creates a safe, supportive space for their parents.
There are around 400 families in the group. And the fact that parents can join their meeting online or in person is exceptional in itself, she said.
“I think that people sometimes underestimate what it takes for some of the families in the group to just make it to the start of the day,” Mehler said. “Sometimes ... just the work of keeping their child alive is like climbing Mount Everest every single day.”
Mehler got the idea to open a support group in Midland after moving there from New Jersey. She and a friend there had supported each other and then co-founded 1in6 Support.
That friend was Alma Schneider, who also has a child with a disability. Schneider has been running her support group in New Jersey since 2010.
Mehler joined Schneider’s group while living in New Jersey and then patterned a group in Midland after it.
“Community was really needed for families with children with disabilities in Midland,” Schneider said. “People really needed to not be in isolation in this kind of a family journey. And (Mehler) really hit a nerve. She’s doing amazing work there.”
Mehler and Schneider have a private Facebook group for both Midland and New Jersey’s communities, where parents can discuss their issues and ask for advice.
The mothers also host a podcast called “2 moms no fluff,” in which they talk about raising their children without “sugar coating” their experience, Schneider said.
“We really make a point of talking about things that people consider taboo, or shameful or embarrassing,” Schneider said.
“We want people to know that even in their thoughts, they are not alone ... They might have had anger at their child, or they might have felt like they were too overwhelmed and it's unfair that they were put in this position. We want people to know that these are normal things to think.
“Most of the shame that people have about having a child with a disability ... really comes from ableism, from society. It is not about their child," Schneider continued.
To raise awareness about the community of people with disabilities, Mehler is organizing the new Abilities Parade at 3:30 p.m. this Tuesday in Grove Park. Then, at 4 p.m. there will be an opening of a new Changing Places Restroom in the park.
Fletcher said this project will be helpful and make it easier for her son to change when outside. Before, their experience was putting him on the floor on the hospital sheet to change the diaper, which didn’t provide any comfort or privacy.
Mehler said the restroom was fully sponsored by the donations from the community and organizations.
“It's almost impossible to go through life and not be touched by disability, one way or another,” she said. “We need as a society to do all that we can to be fully inclusive, to think about how we can open our doors ... so everybody can participate, no matter their disability or ability.
“By doing so, we will start seeing more and more people with more abilities all around us. People with disabilities have a lot to contribute to the conversation.”
To be an ally, Schneider said, it is important to ask the families of kids with disabilities what help they need, to avoid assuming things about them and to include them in your communities.
“There are many invisible disabilities, and you might not be aware of people in your own world who have disabilities, who may need your help and support,” Schneider said.
