DUNCAN — Editor’s note: In April 2010, The Banner published a feature on Meredith Albin and her son, Ellis. At that time, Albin was learning how to cope with Ellis after he was diagnosed with autism. Her dream was to bring to Duncan a facility that could help other parents. Now, Albin’s dream has become a reality.
Five years ago, Ellis spent his days screaming and banging his head against a wall. Communicating with his mother, Meredith, was not something he comprehended and for her, the battle was greater than anything she was prepared for. Her son had been diagnosed with regressive autism by the time he was three and she didn’t know if he would ever speak. He was completely nonverbal.
Now, Ellis, 7, stops and listens to his mom in between running and playing with his sister, who is 13 months younger. He is verbal and communicates even with strangers. He also has a new friend these days which has further helped him progress into a more communicative state.
Hannah, a rescue dog from Stephens County Humane Society Shelter, is Ellis’ best friend. The two are nearly inseparable and when Meredith picks her son up from school each day, Hannah is in the vehicle. Sometimes they head home, many times they make a stop at Live Wires Behavorial Center, located in the Brookwood Complex.
Live Wires is a dream that finally became a reality for Albin, who opened it in August 2012. Now she spends her days helping children diagnosed with autism. For Albin, 16 hours a week working with a variety of children in different spectrums of autism, is comparative to a regular working schedule of 40 hours.
She’s hired an assistant, Tara Harper, who helps with phones and other administrative duties.
“Just watching her wears me out sometimes,” Harper admits. “She’s an amazing woman, strong, passionate. She is pretty much wonder woman, seriously.”
Albin teases Harper and pretends to pull back an imaginary cape and flexes her muscles.
But while there are many lighthearted moments, Albin is extremely serious about advocating autism awareness.
“They, (the children) don’t grow like neurotypical children. They are splintered. There is such a wide spectrum —from high, high functioning to low functioning — some can read while others use music to communicate.”
What she has found in working with children who have autism is each child has a motivator. For her son, it is dogs.
Having Hannah has inspired Ellis to try and read to the dog. That’s his motivator. Other children may be motivated by certain objects or colors.
At Live Wires, there is one large room filled with many toys and games. There is also a conference room that has a two-way window so parents can watch their child’s progress if they so choose. A smaller room which only has a couple of features, like a sand and water activity table and some art supplies, is the Sensory Room. It is, for many, the first stop in their therapy.
It’s where Albin can help identify a child’s motivator. The room has few elements, in an effort to eliminate excessive distractions.
“I have one little guy who is highly motivated by water. It is whatever their interests are. That’s how I guide them,” she said.
“The target is to identify maladaptive behaviors, hitting, kicking and screaming, and replace it with a functional behavior.” When a negative behavior happens, Albin is able to use the motivators to diminish the behavior.
“Where a child may know how to play with a car, someone like Ellis knows how to spin the wheels. We have to teach those skills.”
Harper said she watches Albin work with children in a very repetitive manner. It could be just spending 45 minutes teaching a child how to replace a coat on a hook. The idea is to encourage the child so he or she can be placed in a social setting.
Albin has a few success stories already since opening in August.
A five-year-old boy had made some progress, just three weeks before Christmas. The mom noticed and began to cry. As Albin recalled the incident, her own tears came.
“I was that mom once,” she said, recalling when Ellis was struggling with his own fearfulness and she didn’t know where to turn for help.
“The most important aspect is parental involvement,” she said.
Getting to the current state of social awareness in which Ellis now lives has been one of the greatest rewards for Meredith. There were trips around the country in her quest to diagnose Ellis and hours and hours spent researching and learning everything about autism. Each moment dedicated was to help her son who will always require constant therapy. But today, Ellis is a much different child — and not as regressed as Meredith once feared.
Albin is one of only a handful of people in the State of Oklahoma who are certified to deal with behavioral issues of autism.
As an Applied behavior analyst (ABA) and sitting/acting board member for the Oklahoma Licensed Behavior Analyst Board, Albin is also the only one in the southwest Oklahoma/Fort Sill region to offer the services she has at Live Wires.
She is owner/operator of the facility. It is the only therapy that is evidenced-based and recommended, she said.
So how does she help reach a segement of society that may feel isolated? She is constantly calling schools, area police departments and agencies to create awareness. She has many ideas, too. Like pushing for dispatch centers to flag addresses of homes with autistic children in case of an emergency, like a fire.
“I will help (parents) advocate for their child. I will help them understand what is available to them,” she said. It usually starts with a phone call from a parent seeking answers. The first thing Albin does is ask many questions about the child. “I ask how serious the behaviors are, whether it is crying or tantrums, or if it has become self-injury. Could they harm themselves.”
“Then comes the bombshell,” she said. It’s the hardest part of any conversation. Oklahoma does not have any insurance coverage for children diagnosed with autism. Many parents barely can afford the day to day budget, much less therapy.
“To get this kind of help and therapy, it’s like paying college tuition at 3-years-old. That’s what Jay and I looked at,” she said when she and her husband realized what they were facing.
Lack of legislation frustrates Albin
Since Live Wires is the only certified facility in this region, a waiting list is already forming. That’s because while there is no insurance mandate for Oklahoma, Tri-Care does cover it for military families, she said.
“Thirty-one states have autism insurance reform. Oklahoma is one of four not even touching it,” she said.
In fact, it is so ignored that a family who needed help and had pushed for legislation’s involvement a few years ago, has moved to another state.
Nick’s Law, which was first introduced by a state representative in 2008, stalled.
“It didn’t pass even after massive amounts of lobbying,” Harper said. The board certification statute became effective Nov. 1, 2009.
Albin said she finds it ironic that the state doesn’t do anything to help children with autism, but requires a state board and certification, which includes paying a fee to the state just to even be heard.
It’s like taking advantage of an already difficult situation that wasn’t of their own choosing.
“It (parent of a child with autism) picked me. It would be selfish if I didn’t help. Why wouldn’t I help other parents have hope? I wanted my son to have the best possible chance.”
April is National Autism Awareness Month, and a parental survey released by Centers for Disease Control and Prevention, showed 1 in 50 children have been diagnosed with autism spectrum disorder. Albin said just south of the Red River, in Texas, it’s an entirely different world. “Texas has awesome services — or go to either coast.”
Also, because autism awareness is increasing, newer facilities are popping up in which it’s like one stop shopping — offering services that tackle everything from doctors to hearing, speech and more.
“Autism Speaks is funding these types of initiatives — to treat the whole child — not just subparts.”