Parenting can be joyful. It can also be hard. And if your child has autism, the joys -- and difficulties -- of parenthood can be multiplied. For our sixth and final installment in WMRA’s series on autism, we take a look at the many challenges facing parents—from housing to employment to transportation—and where they find hope. WMRA’s Jordy Yager reports.
It’s a Friday in Charlottesville and Natasha Lee is dropping her son off at school.
STAFF: Hi bud! Hi buddy boy, good morning! Did you just come back from the dentist?
Natasha’s son is nine. He has autism and doesn’t speak. The dentist, she explains, was a bust. He never quite calmed down.
And that’s not unusual for parents of children with autism. Whether it’s repeat visits to the dentist, teenage diapers, or putting alarms on doors—parents have to adapt to a new normal. And that new normal looks really different depending on how much money you have.
If, for instance, you don’t own a car. Appointments for kids with autism don’t take 30 minutes, they take hours, and if you ride the public bus, like Natasha and her son, those appointments can take a whole day and involve a lot of time in public.
NATASHA LEE: He used to pull people’s hair and take their glasses, so I tried to sit all the way in the back and…He yells a lot on the bus, too. Sometimes I’ll be scared that they’re going to kick me off the bus.
It’s exhausting to always explain your son’s behavior, she says. A car not only would save them time, it would give them privacy. And then there’s work. Natasha has a job that works around her son’s needs, but it pays below the living wage it takes to survive on your own in Charlottesville. And that leads to one of the biggest challenges: How to get her son an in-home caregiver.
LEE: They would help with him at home while I get things done, because it’s hard when you’re there, because his dad goes to work and stuff, and when it’s just us there sometimes it’s hard to do things, like it’s hard for me to do things with my daughter like help her with her homework and stuff like that.
Parents can get a Medicaid waiver, which uses federal money to pay for the care of people with autism. But it’s limited, and it only pays in-home caregivers $8 to $9 an hour. Wealthier parents bump that up to $15 an hour, with cash under the table. But for moms on a budget, that’s not possible.
Tisha Allen knows that struggle. Her 12-year old son also has autism and to get the Medicaid waiver, she got run-around after run-around. Call Social Services she heard.
TISHA ALLEN: So I would call Social Service, and it was like, no, you have to call the health department. Okay. Call the health department, no, you’re supposed to call Region Ten. Call Region Ten, no, you’re supposed to call your doctor. You call the doctor, and they’re like what? No, you’re supposed to talk to Social Service. And I’m like, you know what…. [laughs]
And that’s where Hilary Nagel comes in. Hilary is a clinical social worker at the Virginia Institute of Autism and works as its family resource navigator.
HILARY NAGEL: Part of what my position is to be a supportive listener, to hear how this is impacting the family, the questions they might have and to really provide as much information about next steps, and to do that at a pace that feels good to the family. And with all that information, then they are able to make the best choices for how to best support their child.
Hilary’s helped Natasha and Tisha and dozens of other parents navigate the complex web of information. And that helps, a lot. But it’s not just the logistics, Tisha explains, it’s the emotional exhaustion and isolation. Sometimes she thinks about parents whose children don’t have autism.
ALLEN: You don’t know how thankful you might be that you might have to pick up junior’s socks just because he left them in the floor versus I’m going to have to figure out how, when he gets older is he going to let me shave his face? What’s going to happen when he goes through puberty? What is going to happen to him, to me? What happens to him if something happens to me? How do I know if he’s in pain? It’s so many things that come to you, and it’s so scary, and if you’re by yourself, it’s not a lot of resources in the area.
[AUTISM 5K EVENT]
For the last two decades, VIA has held a 5K race to benefit people with autism. People run, they cheer, dance, it’s a great communal feeling. But if you have to work on a Saturday, you can’t afford a caregiver, you have to take public transportation, or you just don’t feel comfortable in that setting, that day is not for you.
So VIA tries to make other options available, like a 3-day parenting class that Natasha did last year.
LEE: It’s really helpful, because I was actually around other parents that had different stories about what they have to deal with at home too, and it’s like I can relate, I just felt like I was at home when I was there.
And home can be another challenge for parents of kids with autism, especially if you rent.
LEE: Yeah, we actually had to move because he went through a stomping stage, where he stomped, and we were living upstairs from a neighbor and we had too many complaints.
They moved to the other side of town, where neighbors have been better. But now they have mold in their house. And the battle with landlords is never-ending, like not being able to mount a TV on the wall, to prevent it from being knocked over, or installing upper locks on a door that can’t reached by younger kids.
Natasha has applied with Habitat for Humanity to build her own house. It’s a long process, likely years, but she’s excited, because the financial possibilities could be life changing. It would also mean small things like being able to paint the bathroom another color, her daughter’s room too, but especially her son’s room. He may be non-verbal, but he’s incredibly visual, and colors would paint a more vivid future.