10th year of Autism walk a milestone
Odessa American - 4/21/2019
April 21-- Apr. 21--When Malissa Roach's grandson was diagnosed with autism, she decided having a walk would be a good way to bring families together to find the resources they needed.
The result ultimately became the Autism SHARE Walk. The 10th edition is set for 9:30 a.m. to 1 p.m.April 27 at Grande Communications Stadium, 801 N. Loop 250 West, in Midland.
Roach said it took more than two years to get a medical diagnosis for her grandson, Colin Ramzel, who now lives in Mansfield.
"He didn't talk," she said. "We didn't know what life was going to be like for him. He's a pretty bright kid."
Roach added that it was difficult to find local resources.
"At the time, I was working in the health science library at Midland Memorial. I was a person people came to for resources. It just felt like if I couldn't find them, there were probably lots of people that had a lot more difficultly than me and I just wanted to do something to make that a little bit easier on family," said Roach, who is now continuum of care/autism services manager for PermiaCare in Odessa.
"The first year of the walk," Roach said, "there were about 300 people, which was exciting to us back then. It was huge. But we've averaged around 4,000 the last couple of years, so it's been amazing."
Billed as the largest walk in the Permian Basin, it is free to participate. Strollers, buggies, riding and walking aids are welcome.
A resource fair is scheduled for 8:30 a.m. to 1 p.m. for all disabilities and all ages. More than 50 agencies will be represented.
Prizes will be awarded for the top fundraising teams and people can join, give to or form a team online. All proceeds benefit SHARE and help local families. SHARE stands for Sharing Hands, a respite experience.
SHARE Executive Director Tom Jones said the nonprofit offers support and respite for families with loved ones with special needs.
The first year, the autism walk raised $35,000 in funds for Autism Speaks, the national organization.
Last year, $112,882 was raised, and as they have the last several years, proceeds went to SHARE. The 2018 event drew 3,500 attendees.
Roach said finding resources now is easier to a point, because the services are a little better known.
"... I still run into the same thing where because I work with families that have children with autism and they still come in saying we can't find a way to get a diagnosis and that's primarily because we just don't have the resources here ... to do that," Roach said.
There were a couple of physicians in the Permian Basin who can make the autism diagnosis, but Roach said one of them is moving away.
"So it's very difficult and we have so many in this area that are on the autism spectrum," Roach said.
Schools diagnose children with autism for academic purposes, but it's not the medical diagnosis that Roach said is needed to obtain services.
"People are moving into the area constantly, so it's even harder on them. They don't know where to begin and where to go, so we just try to get the word out here as best as we can. One of the big things with SHARE is they're very good at connecting people and getting the word out and getting them to where they need to be," Roach said.
The way Roach said she finally got her grandson diagnosed was through her job at Midland Memorial.
"We had gone through his local pediatrician who said he didn't look autistic and a couple other doctors. One of the jobs I had at the hospital was CME coordinator, continuing medical education. I'd bring in specialists to talk to the physicians to get their hours. One of those specialists just happened to be a developmental pediatrician that specialized in autism," Roach said.
At one point, Roach said she talked to the doctor about her concerns and frustrations.
"She offered the next time she came out to bring all her testing equipment," Roach said. "She spent about three or four hours with Colin and said he was, in fact, one of the most classic cases and wanted permission to film so that she could use that to teach other doctors how to spot some of the signs," Roach said.
Roach said her grandson and his family come to Midland every year for the SHARE Walk.
"... He just turned 13 and the last two years he gets excited about the walk for autism. He knows it's a big deal. I've been excited about this for over a year now, just thinking about this big anniversary and how far we've come and how much we've grown, just how many families we've been able to reach. ... It used to just be the parents and family members and now we have whole schools coming out and supporting their students. We have employers coming out and supporting people that work for them; just all sorts of people in the community -- kids, adults caregivers. It's so neat to see that that people care and they want to come out and show their support," Roach said.
She added that Grande Communications Stadium is probably now the only location big enough for the walk.
"It's incredible. Back in the beginning, we had half a dozen moms working together. We'd all bring an ice chest full of ice and a couple of cases of water and that was that. Now Coca-Cola brings out their trucks full of soft drinks and water and ice and Market Street (grocery store) brings all this food. They barbecue. It's just a huge party; a huge celebration," Roach said.
About four years into the walk, Roach said she wanted to have the money raised stay in the Permian Basin.
She met Jones at a walk. SHARE, a nonprofit, provides respite care and support for people with loved ones with special needs. It does not charge for its services.
"He was part of the resource fair. Then a few years later, I went to work for SHARE. I worked for him for a few years. It was during that time that I got to know so many families even more and saw everything SHARE was doing. That's when I approached him and the board about having SHARE be the beneficiary of the funds."
SHARE decided to take over the walk and Roach said it meant a lot of work.
"It was a really big deal to family members who were just wanting to be part of something. It was a huge deal to know that money was going to stay local," she added.
The walk has also provided education about autism to the Permian Basin, so people realize that it's not a bad thing.
"A lot of people with autism are so smart. They struggle with different things in life, maybe social skills, or sensory issues, or just a different way of living. We've got ways to help with that. It doesn't have the stigma that it used to," Roach said.
She noted that anyone is welcome at the Autism SHARE Walk.
"It's free to register, free to walk. We sell T-shirts, hamburgers and hot dogs and stuff to raise more money, but it's been very important to have the majority of things just free. We don't want anybody to not be able to come out to celebrate. This is the one time of year they can really celebrate their kids, their family members -- just be proud of who they are and the differences we all have," Roach said.
Jones has been impressed with the growth of the walk, as well.
"When SHARE first started working with the autism walk, I know Malissa did a lot of work working with Autism Speaks," Jones said.
She came to work for SHARE in 2013 and decided she wanted to join forces for the walk so the funds raised would help families in the Permian Basin.
"That's how SHARE got involved with the walk. Basically, we took the walk over and developed a website and did all the infrastructure to organize the walk, so that's kind of how it all started," Jones said.
Since then, participation has increased tremendously.
"Autism is just huge all over the country -- the number of kids that have autism and that are being diagnosed," Jones said.
SHARE serves a 19-county area, but most of the families are from Odessa and Midland. Its locations are in Odessa and Midland at First Christian Church in Midland and Crossroads Fellowship in Odessa.
Last year, the organization served more than 200 families.
"We want people to know that SHARE is more than just the walk," Jones said.
He added that there are a variety of services SHARE offers such as support groups for teenage siblings and scholarships.
There also are family events, such as an Easter egg hunt, for families, moms night out, parent support groups, dad's night out and other offerings.
"What really helps families is if we can connect them with other families and resources in the community," Jones said.
"The Resource Fair for this walk is very important. One of her (Roach's) gifts is really connecting people. That's kind of what the walk has become is a way to connect families with one another and then with resources," Jones said. "The other part, too, with the walk is the families bring their support system -- their family members, friends, coworkers. It's a lot of community building. It lets them know they're not alone. There are businesses and organizations they might not be aware of."
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