Tonya Ryals is a Bonaire mother of an autistic daughter and a volunteer for a group that helps inform other parents dealing with autism about resources and encourages them to share experiences and information.
Occupation: Homemaker, autism advocate volunteer
Q: How are you involved in autism advocacy?
A: First, as the mother of an autistic child, then I also work with Middle Georgia Puzzle Pieces Autism and Special Needs Family Support Group. I have a daughter, Angel, 12, who is autistic. She was 6 when she was finally diagnosed with autism.
Q: What is autism?
A: I wish it was easier to define, but I’d say it’s a neurodevelopmental disorder or a range or spectrum of disorders. It makes it hard for them to communicate with others or interact socially in ways we think of as the usual ways. I includes behaviors that vary from child to child, like repeating a behavior over and over. It affects verbal communication and the awareness of others. That’s the idea.
Q: Now, how about a mother’s definition of autism?
A: Oh, it breaks your heart, that’s one thing. And on the other hand it gives you a real joy in your child, too. From all my research I sort of use the idea that in your brain it’s like wiring up a house but you don’t have enough wire. You run short in places. Or it’s like having an old house with fuses and you plug one more thing in and it shorts the house out and things don’t work right. Angel seems to know so much but can’t get it out; knows what to do but can’t do it. My definition also has to include what it does to the whole family. You love your child but have to acknowledge the difficult things it causes. As far as being a mom, it’s always your job to get your child the best quality of life possible then with a special needs child you want to see that happen before you’re out of here.
Q: Out of here?
A: One of a parent’s greatest concerns for their special needs child is knowing they’ll be taken care of after you die, and that’s going to happen to all of us, right?
Q: Is Middle Georgia Puzzle Pieces a volunteer or professional organization?
A: Purely volunteer.
Q: How did it get started?
A: Eric Stewart started it with another parent of an autistic child who’s no longer in the area. I stepped in and help out. I did our website which is getting an upgrade soon.
Q: When did it start? And what do you do?
A: About five years ago. It’s to help inform other parents about resources and to share experiences and information. We do a lot of things and not all of them, or even most of them, are in a group situation. We probably do a lot of what we do one on one and even just by running into people we help or steer in the right direction. We’re all about resources and getting information. That’s mostly what our website is.
A: Links to national and area groups, links to doctors, churches, and really big is links to paperwork and stuff like that. An unseen aspect of autism is parents and caregivers spend an unbelievable amount of time filling out paperwork and trying to find and get services and benefits to help their children. That’s a big reason for our group: to try to help others with what we know collectively instead of everybody having to doing everything from scratch.
Q: What’s the website and contact information?
A: It’s www.tobar5.wix.com/middlegapuzzlepieces. You can search for us on Facebook which is a good way to keep up with the latest happenings. And my email is firstname.lastname@example.org.
Q: Do you have meetings?
A: We don’t have, like, chapter meetings, but we’ve got a special needs support group meeting every fourth Tuesday of the month from 6:30 to 7:30 p.m. It’s at Christ Chapel on Moody Road and doesn’t meet the months kids are out of school: November, December, June and July. Then there’s sort of a family night at Monkey Joe’s every third Tuesday, 6 to 8 p.m.
Q: You mentioned impact to the whole family — can you elaborate?
A: There are things all the time. One thing that comes to mind is sleep! Most parents just don’t get good sleep because of the sleep patterns of their kids and the stress you deal with from thinking about them and watching out for them all the time. Angel sleeps about four hours at a time some times and if I could even get that it would be great. But I usually get about two hours at the time and that’s not sound sleep.
Q: Something else?
A: I wish insurance would cover things suitable to our situation. Like Angel can’t communicate with a doctor normally to diagnose things when she’s sick but if she could get a bio-scan that would tell a lot. But insurance doesn’t see it that way. It’s not covered. There are a lot of treatment not covered that would be great for us.
Q: What more would you like to say?
A: As far as our group, the big thing is were here to help. Take advantage of what others know and the opportunity to get out every now and then and be with others. Otherwise, I’d tell people don’t be afraid to interact and greet special needs kids or families. We’re just people struggling along like everybody else. It’s worth the risk and generally if you “do something wrong,” it’s not a big deal. We all just work it out. Typically, people appreciate the positive interaction. And I think the kids do, too, even if they don’t respond like everybody else does. Try giving ‘em a high five. If it doesn’t work out — no loss.
Q: Special needs is part of the name, not just autism. Are all welcome?
A: Yes. We’d like anyone to get involved to get or give help. We want to grow increase what we can do for people. We’re just starting out in a lot of ways and could use volunteers and helpers.
Q: One other thing: what’s with the “puzzle pieces” in your name about?
A: That’s the symbol for autism. It’s such a puzzle. Everything about it. From what those that have it experience to what causes it and how you deal with it. It’s such a puzzle.
Answers may have been edited for length and clarity. Compiled by Michael W. Pannell. Contact him at email@example.com.