HAZARD Before Russell Bakers son was diagnosed with autism, he noticed he wasnt developing normally. Being a physical therapist, Baker had worked with developing children before and attempted to work with his son before bed to keep him on track with development.
After his son was diagnosed, though, Baker and his wife felt isolated among family and friends whom Baker said could not fully understand the struggles of what it meant to raise an autistic child.
Soon though, Baker and his wife, along with the mother of another child with autism, would create a space for parents to meet and share stories and provide support to one another, something that Baker said was very beneficial for all involved.
The trio started The Autism Support Group of Perry County (ASGPC) five years ago after some encouragement from a vocal speech therapist that was working with the Bakers son.
Baker recalled the first meeting of the group, and said after he and his wife left, it was as if a weight had been lifted off of their shoulders.
Before, Baker confessed it was hard for him and his wife to openly discuss their sons autism with anyone, even family and friends. Being with parents who were living in similar situations, though, made the Bakers feel comfortable.
We could actually sit and talk to the people that truly understood what we were going through, Baker said. It was a big benefit to us to be able to open up to other parents.
Baker, who is now the president of the group, said the most important service the group provides is this level of support that parents with children who have autism dont normally receive from those who dont know, or who havent had to raise, children with autism.
Our mission is to advocate for our kids, to provide support for one another, to help one another any way that we can and to educate the community and spread awareness of autism, Baker said.
They attempt to spread this awareness and educate the community through a number of events, most notably the Autism Awareness Walk of Perry County, which the group began last year at the Hazard High School football field. They are trying to make this an annual event that will draw a large crowd similar to events like the March of Dimes and Relay for Life, both hosted annually in Perry County.
This years walk will be in April Autism Awareness Month and the group is hoping to set up a tent where autism awareness t-shirts and magnets will be sold to benefit the group. Information about autism will also be available, as well as food, a DJ and a visit from the fire department.
We were really proud of how well [the walk] went the first time, Baker said. It was a lot of hard work, but it was a really great awareness event. We want to continue that.
The group is not funded by any outside organization; all the money they have to pay for events they host is donated by the community through the few fundraisers they conduct throughout the year.
What little money the group saves in its treasury is used to fund activities for the children of parents in the group, Baker said. Throughout the year, the group hosts swimming parties, get-togethers and even an end of the year Christmas party for their children, something in which Baker said they might not otherwise get to participate.
[The children] dont get a lot of social experience, Baker said. He said a lot of children with autism have such extreme behavioral and sensory issues its hard to take them into public places both for the child and the parents.
A lot of families decide to just not take their child out as often, so theres very little opportunities for them to do things, Baker said, adding that even when children with autism are in school, they are separated from other children in a special education classroom, making it hard for them to interact with other children.
That social interaction is important for children with autism, Baker said, because it helps them learn socialization which is something he said is usually very difficult for children with autism because its difficult for them to relate to others.
He said socialization for children with autism is something the ASGPC provides for those children.
Baker said there are national autism support organizations that the ASGPC could be affiliated with, but with that affiliation, members of ASGPC would have to pay dues and a percentage of money raised at their fundraisers would have to be sent to the national organization. He added that if they were affiliated with a national organization, there would be a limited number of things they could do with the money they raise.
We just want to be an informal group, Baker said. That way, we can also vote on spending our small treasury on what we wished for.
He also said he and the rest of the group felt that instead of raising money here through local donations then having to send that money to a national organization, they wanted to keep that money in the community and use it to fund activities for their children in their community.
When the group isnt busy planning and carrying out activities for their children, they are working on educating the community about autism, raising awareness about it and advocating for those with autism, both locally by handing out information pamphlets and statewide by participating in some legislative advocacy.
Im real active, Baker said. Im out there, and I try to do as much as I can.
Right now, the group membership is about 20 to 30, with various numbers showing up to the monthly meetings from month to month. He said based on statistics, there are probably about 100 to 200 people with autism in Perry County, and the group wants to reach out to those individuals and their families.
Theres not that many resources out there for autism, so we consider our group as a huge resource for families with autism, Baker said.
The group is an invaluable source of support for parents of children with autism, he said.
Our group is a big resource, especially for the emotional part (of having a child with autism), Baker said. Families coming together and sharing ideas and sharing frustrations, and just having a sounding board, someone to talk to that truly understands that is a huge family resource.
He said he imagines that a lot of parents of children with autism who knew the group was available to them might say to themselves, If I ever need to go I can do that, without realizing the actual benefits of attending meetings. Baker encouraged those parents to consider the benefits of the group for them and for their child.
They can come and be active in our group because we do educational and awareness events and advocacy activities, Baker said. If they come and help educate the community, their neighbors, their school and help advocate with us, then thats going to benefit their child.
The Autism Support Group of Perry County meets on the third Monday of every month at 6 p.m. on the second floor of the Kentucky River Community Care building beside Mountain Ford. For more information about the group, visit the groups Facebook page by logging into Facebook and searching for Autism Support Group of Perry County. Also, a number to reach Russell Baker for even more details can be found on that page.