TouchPoint touches lives

Home training for families with an autistic child is available through TouchPoint.

The service is free, contracted through the state office of mental health. The regional office located in Joplin. TouchPoint, formerly Judevine, provides support for families in the area. 

Since 1995, they’ve served 1,617 families in their 24-county area. They had 71 referrals last year and 71 so far this year. Faced with the mounting costs of care, training and medical bills, parents are referred to the service through the Department of Mental Health.

Parents attend training and specialists visit the homes to help parents establish and reach goals for their children.

Nanny 911
Coordinator Tracy McCormick describes her job as “Nanny 911” for families with autistic children – only they were doing it before there was a TV show.

“That’s what we have done since 1995, that is exactly what we do,” McCormick said. “She even uses applied behavioral analysis.”

Parents will be the ones implementing the ABA therapy and they come to TouchPoint for training before their specialist visits.

“What we do is we give them our knowledge and the terminology that they’re going to need and the thinking behind the terminology and why we do what we do,” McCormick said. “And then after the two days of workshops we go into the parents homes and we’re going to sit down with them and we go over goals with them.”

Goals may be for the child to learn to sit down, to be calm on a shopping trip, to be potty-trained, or tie their own shoes.

“Whatever the parent targets is what we work on,” McCormick said.

They develop a plan, work with the child in home visits and teach parents how to handle the situation.

“We have coaching equipment and we talk to the parents through a microphone,” she said. “They have a little earpiece in and they can hear what we’re saying and we can tell them what to do and how to respond and to know if they’re doing it right or when you need to change.”

They work almost exclusively in the home.

“Our philosophy is to change the interaction between parents and children,” McCormick said. “And to teach them how to get things out of their child that they would not have been able to do.”

Boost training, if a child regresses or the family is trying to start a new goal, is available, but the initial parent training process lasts three to six months.

Night and day
Michael Opfer went through training a few weeks ago. The parent training has helped, Opfer said.

“We’ve been doing it and it’s a night and day difference,” he said.

The big change was adding regular encouragement to any small “good things” Ian does. If a parent walks past and he is sitting on the bed reading, then they will tell him what a good job he is doing. If he is being quiet or holding still he gets positive feedback. 
Ian, 6, is in first grade at a private school.

Finances are a big deal, especially to families who do not meet low-income requirements or who have a child with a mild autism diagnosis.

The measures moving forward in the House and Senate to establish insurance coverage for ABA treatment will do nothing to help the Opfers. Michael is self-employed. Ian is so high functioning that he is not qualified for aid offered to more severe cases of autism. 

“We don’t have insurance,” Opfer said, “And even if we did have insurance they would not help him.”

Ian talks, he hugs his parents and is near the Asperger’s Syndrome end of the spectrum, making him lower priority for aid.

“With a kid like Ian,” he said, “what do you do?”

They do the best they can.

The expense has taken its toll on their family. While they’ve lost things, Opfer said he would do anything for his child.

“I don’t regret it,” he said. “I’d do it over in a heartbeat.”

Ian was diagnosed at 2 years old, but his parents strongly suspected something before then. He would line up his cars in even rows and he has a soundtrack of noises all day long instead of chatter.

Like many children with autism, Ian is very literal.

“We might say, ‘Man, it’s raining cats and dogs out there,’” Opfer said. “And they’d be looking for the cats and dogs.”

Diet change
The Opfers have changed Ian’s diet, going to a gluten-free, casein-free diet. Instead of regular bread, Ian’s is made from nut flours and is low in carbohydrate. He eats grass-fed beef and instead of potato chips he snacks on dehydrated eggplant chips. His mom makes all of his food and Ian is happy to have his own special food, especially if nothing is touching on the plate.

“We figured why not try it – if it works great,” Opfer said.

Once they started the diet his behaviors came down and eye contact improved, his father said.
Before that Chicken McNuggets were Ian’s only food – now he tries new ones. He eats carrots and broccoli and that change alone has to be good for him.

The family is looking at environmental or outside triggers for autism and works with a DAN (Defeat Autism Now) doctor in Virginia.

Opfer says he wants to be able to interact as a family again and be able to go to Wal-Mart or anywhere else – church, shopping, to the movies. He, like many other parents of autistic children, fears a meltdown. With an average child, McCormick explained, parents typically know what sets off a tantrum – the child wanted a piece of gum or a toy. With an autistic child, they don’t know.

“It could be something they wanted or it could be a sensory issue – like the flickering lights or a strange sound,” McCormick said. “It’s more than that. You don’t know why that they are in that rage.”

And they can’t tell that to everyone walking by, so often families give up being a part of the community they once belonged to.  McCormick and other specialists work out small steps so they can interact with other people. They offer positive reinforcements during training by presenting the child a chance to choose the next activity or from an option of two treats.

“Children find out that good things happen when they follow directions,” McCormick said. “It’s part of the learning protocol.”

They start with little things and grow, building behavioral momentum as the child adds skills. Some of what he learned during training is “just good common sense” Opfer said.

“They definitely have filled a need in our lives,” Opfer said. “From respite care to basic guidance to a crying shoulder. Sometimes you almost feel that you’re out there on your own and no one understands you, but they understand.”

The no-cost program is a help to his family and the staff, he says, is kind.

“You can truly feel that they care about the kids, it makes a big difference,” Opfer said. “You really have to love what you’re doing to be doing that. They deserve a pat on the back.”

Twenty-four counties
TouchPoint specialists speak at in-school trainings and perform consultations where a child is struggling at school. A few weeks ago they had a Valentine tea party encouraging social interaction. They have music therapy sessions and conduct “sib shops” in the home for brothers and sisters to help them better deal with their autistic sibling. Specialists travel from McDonald County to Kansas City and from the Kansas border to Laclede County.

They are not limited to children, but consult on autism cases of any age. In case of a crisis intervention, they are on call.

“I may get a call at 2 a.m. that a certain someone is having issues,” McCormick said. “Based on what’s needed I might go to their home and help them.”

With 18 employees in a 24 county area they are stretched thin and the waiting list can be about three months after referral. At times, McCormick said, they serve people who might not even have gas money to drive their child to other programs.

“People can’t forget about those people – they’re out there,” McCormick said. “We travel 2 ½ hours to Clinton and above Clinton just to work with families who would not normally have the resources to drive down here.

“We can’t forget about the families in the rural areas. That’s important too. Autism affects all socioeconomic classes. Everyone has a right to get services for their child.”

For a referral to TouchPoint services, parents who have a child with an autism diagnosis can call the Joplin Regional office of Mental Health 629-3020 and speak with an intake counselor.