Seizures and Autism often co-exist

As people around the country observe National Autism Awareness Month, families in the Lakes Region who have children with autism, along with families facing other developmental disabilities, are planning to meet with the New Hampshire Senate Finance Committee to urge it to restore the funds needed in the state budget to reduce the number of people on waiting lists for services.

While a state law passed in 2007 requires that waiting lists be eliminated, Governor John Lynch's proposed budget has no money set aside to serve those on the waiting lists for developmental disability and acquired brain injury services.

The services, provided through the state Bureau of Developmental Services, include nursing or home health aid care and occupational and other types of therapy.

According to the bureau, it would need $27 million over the next biennium to continue to pare down the wait list per the state law. It is supposed to be provided to people with developmental disabilities when they reach the age of 21, which is the age they can no longer attend public school.

Until the age of 21, people with developmental disabilities receive services from various public school systems under federal law.

Lisa DiMartino of Gilford has a 13-year-old son, John Michael, who has both Cornelia de Lange syndrome and autism.

She helped organize the hearing, which will take place Tuesday, April 14, at Laconia Middle School at 5 p.m.

Locally, DiMartino said, there are 31 developmentally disabled adults on the waiting list for services.

DiMartino said that, although her son has several years to go before he will need added state services during the day, she wants to advocate for other families now and make sure the funding is still a priority when John Michael turns 21.

"We worry about the future of our children," DiMartino said. "When a developmentally disabled person turns 21 and there is no funding for services, it means the person sits at home and their parents will either have to quit their jobs to be with their children or spend a lot of money to pay for services."

John Michael was diagnosed with Cornelia de Lange syndrome when he was six-months-old.

DiMartino said the syndrome is a genetic disorder that causes seizures and developmental delays.

She added that her son also was diagnosed with autism when he was 10-years-old.

DiMartino works for Lakes Region Community Service Council as its family-to-family coordinator and as the legislative liaison.

She also organizes local support groups, one in the Lakes Region for families with an autistic member and one in the Plymouth area for families with members who have special needs.

Melissa Drew of Gilford is the mother of Liam Drew-Huckins, 11, who was diagnosed with autism at 18 months old.

Drew said he had started talking and seemed to be developing at an average pace when "everything stopped."

"He stopped talking, started spinning, had blank stares," Drew recalled, adding it seemed she went from having a child to a shell of a child.

Shortly after being diagnosed, Drew said, her son received early intervention services which helped him learn how to communicate and accomplish other tasks.

Currently Liam can say very few words so he communicates mostly nonverbally. He and his mother communicate with hand gestures and Liam has a computer that helps him express what he wants or needs. The touch-screen computer has picture symbols for words and phrases and, when he touches the symbols, a computerized voice is emitted from the machine.

Drew said that, with the computer, she has been able to ask Liam about his day.

Like a typical young boy, Liam usually doesn't want to talk about school, but he'll excitedly seek out and play words that indicate what he did in the community that day.

Both Liam and John Michael attend Gilford Middle School. Liam is in fifth grade and John Michael is in sixth grade. They both have occupational coaches provided by a company that contracts with the Gilford School District and helps them throughout the school day. They escort the boys to their classes and bring them out into the community during part of the day to learn basic skills such as shopping and counting money or to volunteer at places such as food pantries and libraries.

Drew said Liam loves going to the library and has very strong word recognition skills. He also has been riding horses for the past three years and enjoys visiting one of his school service providers at her home because she has horses.

Since Liam was little, Drew said, service providers have taught him through a method called Applied Behavior Analysis.

"It's a type of therapy they use to get him to come out more, positive reinforcements to produce the behavior response one is looking for and to help avoid unwanted responses," she said.

Both Liam and John Michael receive services after school.

John Michael has providers that help him with basic skills and occupational therapy. Liam receives care from nursing aids or assistants who help him with daily hygiene and other tasks.

Drew said Liam needs 24/7 care, as he is impulsive. He has started three kitchen fires in the past due to a fascination with knobs.

She said the last kitchen fire began in a microwave when Drew went to take a shower and Liam put food in the microwave and set the timer for 10 minutes.

"It's constant hands-on with our children," DiMartino said. "If he's not watched, he'll run out in the street, go off with strangers."

One positive development over the past year is the friendship that has blossomed between Liam and John Michael.

Liam moved to the area with his mother last year from the Merrimack area.

DiMartino said John Michael likes spending time with Liam both in and out of school. The two have competed in the Special Olympics together.

DiMartino said John Michael met Liam last year when he and his mother moved to the area from Merrimack.

"Their friendship means the world to me," DiMartino said, who added that John Michael, like many children with autism, do not socialize easily with other children and sometimes do not show an interest in socializing.

DiMartino said the two laugh a lot together and have seemed to develop their own way of communicating through words, sounds and gestures.

Drew said Liam is atypical of many with autism in that he is very social, he will make eye contact and he likes to give and receive hugs. Some with autism have sensory perception and nerve issues to the point where a gentle touch, a hug or a handshake is physically painful to them and emotionally upsetting.

According to the Centers for Disease Control (CDC) in Atlanta, Ga., autism spectrum disorders are a group of disorders that cause substantial impairments in social interaction and communication and the presence of unusual behavior and interests.

Many people with autism spectrum disorders also have unusual ways of learning, paying attention and reacting to different sensations. The thinking and learning abilities of people with ASDs can vary from gifted to severely challenged.

Disorders within the autism spectrum include autism, Aspergers syndrome and pervasive development disorder-not otherwise specified (PDD-NOS). The three conditions, along with Rett Syndrome and childhood disintegrative disorder, make up the larger diagnosis category of pervasive developmental disorders.

According to the CDC, autism spectrum disorders may occur in all racial, ethnic and socioeconomic groups and are four times more likely to occur in boys than in girls. The CDC's Autism and Developmental Disabilities Monitoring Network released data in 2007 that found about 1 in 150 8-year-old children in multiple areas of the United States had an autism spectrum disorder.

A disorder within the spectrum may be detected in children as young as 18 months old. All autism spectrum disorders begin before the age of three and last throughout a person's life.

ASDs can often be detected as early as 18 months. While all children should be watched to make sure they are reaching developmental milestones on time, children in high-risk groups, such as children who have a parent or brother or sister with an ASD, should be watched extra closely. A child with any of the warning signs should be checked by a health care professional.

Daryl Carlson/Citizen photo Liam Drew-Huckins, left, and John Michael DiMartino, who both suffer from forms of autism, are best friends.

DARYL CARLSON/CITIZEN PHOTO Core Vocational Services employee Kate Jameson works with John Michael DiMartino who has a form of autism.

Core Vocational Services employee Sidney Fitzgerald, left works with Liam Drew-Huckins who has a form of autism. Daryl Carlson/ Citizen photo

Daryl Carlson/Citizen photo Lisa DiMartino, left, and Melissa Drew discuss the daily challenges of raising children with autism.