Through the Looking Glass

Here in North Carolina were fortunate to have access to NC TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren 910-251-5700) a program based out of UNC-Chapel Hills Department of Psychiatry that has regional centers across the state including one located right here in Wilmington. “TEACCH has been around since the early 1970s. We provide lifelong treatment and education for individuals with autism ” says Edie Hughes longtime psychoeducational therapist for the Wilmington TEACCH Center. “A child doesnt need to have a diagnosis to come to us just red flags like not paying attention to people or a language delay If its caught before the age of two or three kids look a lot better when theyre five.”

As overwhelmed with clients as TEACCH is the organization has a formidable waiting list its good that there are a number of other services available locally to serve autistic youth. For children up to age 3 the first stop is usually the CDSA for evaluation and diagnosis which then connects parents with other services in the community. For ages 4 and 5 the preschool coordinator in New Hanover County is generally the starting point.

Both the CDSA and New Hanover County Schools (NHCS 910-763-5431) refer children to Easter Seals/UCP-ECOS (Early Childhood Outreach Program 910-392-7003) funded in part by Smart Start of New Hanover County. ECOS supports inclusion in community preschools and childcare working with children ages birth through 5 in their existing environments using a variety of methodologies including Floortime Applied Behavioral Analysis therapy (ABA) and TEACCH. They emphasize early intervention and if contacted initially by parents caregivers or preschools will work to develop strategies for children to succeed referring families to the CDSA or NHCS preschool coordinator if further evaluation is needed.

Parents often provide the best support for other parents. WRAPS (Wilmington Regional Autism Support 910-762-6764) a support group chapter of the Autism Society of North Carolina has been meeting for over 10 years both in person and via an online Yahoo group.

Enter Teresa Mebane a parent advocate for the Autism Society of North Carolina trainer for Family Support Network and co-founder of the WRAPS group. The mother of three autistic boys Logan (age 9) Matthew (age 18) and Justin (age 20) Teresa understands firsthand what its like to live with this disorder. Shes been through it all from the shock of early diagnosis to the struggle to figure out how to provide for her sons when she and her husband are gone. In her role as a parent advocate she brings all of her experience to bear in the hopes that she can make other families lives a little easier. Her territory: Bladen Brunswick Columbus Duplin New Hanover Onslow Pender and Sampson Counties.

Mebanes story is a familiar one. “We initially thought Justin was just hard of hearing ” she says of her oldest son. “Then I saw a movie Son-Rise (about a child with autism) and something resonated. I just sat there crying.” She took Justin to the CDSA where he received a diagnosis of PDD-NOS at the age of three. “It was shocking to me. I was a little in denial ” Mebane says. Her search for information has transformed her into a tremendous resource for other parents who are traversing the maze of raising children with autism spectrum disorders from initial diagnosis to starting school to navigating the tricky waters of friendship and dating.

Despite or perhaps because of her vast body of knowledge for all things autistic Teresa Mebane is very concerned about what the future holds for her sons. “We had to set up a special needs trust guardianship power of attorney ” she says. “Its a really bad idea to leave a lump sum of money to people with autism. For one thing someone could easily trick them out of it. For another if they got all of that money they wouldnt qualify for services.” She shakes her head. “I thought Id done all of my grieving already but when we started thinking about what would happen to the boys .”

The Mebanes hope that Justin and Matthew will be able to share an apartment in a few years with the intervention of services as needed of course. For others whose children are not as high-functioning the relative independence of apartment life just isnt an option. The Autism Society has a list of potential residential options but for many parents like Judy Clark the nearest facility is many hours away.

Clark who with Mebane started the local autism society support group also founded ASAP (Autism Support and Programs 910-270-2890) a nonprofit created in 1997 to provide much-needed free services for autistic youth during the summer. Her 19-year-old son Remly is severely autistic and needs to constantly wear a restrictive vest so that he does not hurt himself. For the past eight years Remly has lived at the Murdoch Center a residential facility that is a six-hour round trip from the familys home in Hampstead.

After making “weekly trips” to see Remly for eight years and counting Clark was desperate to bring him closer to home. Her determination combined with the support of community members including Edie Hughes at TEACCH and Ruth Hurst a psychologist who is directing the UNCW Masters degree program in Applied Behavioral Analysis has led to the creation of a brand-new group home in Hampstead complete with horses chickens and organic gardens. Rainbow Farms is dedicated to providing residential support for children who are severely affected by autism right in their own community. “Remly will be our first resident and will come home May 11 ” Judy says. “Its a big undertaking and I have so many mixed emotions. Im elated Im exhausted and Im a little nervous.”

The incredible rise of autism diagnoses poses challenges for the system at every level from early intervention to adulthood and beyond. “School systems are trying their best to figure out how theyre going to handle this when bigger numbers hit the schools ” says Edie Hughes “when theres not 10 kids in a middle school but 25 and then theres high school and college.” Identifying children on the autism spectrum and intervening as soon as possible are essential to maximizing their potential for success.

No one agrees more than Rachel Berman a friend of Helayne Goldman whose five-year-old son Noah is also diagnosed with PDD-NOS. Helayne encouraged Rachel to pursue having Noah evaluated early on advice for which shes grateful. “People are afraid to say anything because theyre worried about offending others. When do you say something to a friend?” Rachel says. “If a friends kid is about to run into the street youd say something because theyre in danger. But when its something like this when do you speak up?”

Helayne Goldman echoes that sentiment. “Parents are afraid of the label. Just get your kid services. The diagnosis is the key to the door.”