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Autism: A Child’s Silent Struggle

20110425-Renaud-Autism-005McALLEN — Melissa Renaud remembers the first time her son said, ”I love you.” He was 5 years old lying in bed after a hard day at school. She held him and stroked his hair for comfort and said, “Everything is OK. You need to be strong and we are here for you.” She knew he probably wouldn’t respond. However, in that moment, her son made direct eye contact, which isn’t normal, and said, ”I love you.”

Renaud’s son, Mikey, now 10 years old, was diagnosed with autism at age three. His diagnosis has united the family over the years. Together they have learned how to overcome obstacles to help their son have a chance to excel in life, and through their efforts to help Mikey, they have educated others.

“When he told me ‘I love you,’ I knew right then, he understood me. I was going to do whatever I could for him,” she said. “He wasn’t going to quit and neither was I. It’s a moment I will never forget.”

Autism is estimated to affect one in every 110 children, according to autismspeaks.org. It is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. It’s a neurological disorder that is very complex and is not the same in any two children, said Renaud. Studies also suggest boys are most likely to develop autism; in the United States, one out of 70 boys is diagnosed. It has a large spectrum of degrees and affects a child’s communication, social interaction and behavior. There is also no answer to what causes autism or a cure for autism.

“It’s something that is not always visible. They appear normal most of the time. It’s hard for the community who isn’t well versed on autism, to see a child throw a tantrum and think the child is being spoiled,” she said. “It’s usually the autism and the child expressing frustration of not being able to communicate.”

Seven years ago, when Mikey was two years old, the family moved from California back to the Rio Grande Valley.

“I had noticed his vocabulary was almost non-existent, a lot of babbling, noise and not really words,” said Renaud. “He walked on his toes and he flapped his hands. I figured the transition from California to Texas had been stressful and their father being away to work constantly had taken a toll on him.”

Mikey’s pediatrician recommended speech therapy. Later a medical evaluator from San Antonio gave the autism diagnosis, with a very bleak prognosis. He told the family Mikey would probably always be non-verbal. He would not be able to form social or emotional attachments to anyone and would not be able to distinguish who his parents or sister were. The evaluator said he also would likely have to be institutionalized as an adult.

“We had to accept it, but no one was going to decide what his future was going to be like,” she said. “From that day forth, we vowed to do what we needed to support him and get him the help he needed.”

Renaud and her husband formed a stronger partnership and educated themselves in every way they could. They researched, met with support groups and visited specialized clinics and therapies for Mikey.

“It was overwhelming, but getting educated really helped us,” she said.

They immediately put their son in speech and occupational therapy along with a rehab center that focused on autism. Through trial and error, the Renauds found what type of therapies worked best.

Renaud also joined the board for the local Autism Council for Educational Support and Scientific Studies (ACES), and is still a member. ACES is composed of professionals and parents that offer support, information and awareness activities Valleywide.

“I’m grateful for the opportunity to be part of the ACES’s board. Much of my autism education came from a parent I met or their experience with their children,” she said. “Networking and having that support have been a great help.”

Mikey’s older sister, Danielle, also played an important role in helping make a grim prognosis positive. Though she was too young to understand when her brother was first diagnosed, as she got older she involved herself at therapies and would set up the same play scenes at home to help her brother.

“Not only did that help him, but it helped her. It empowered her because she’s one of his teachers,” said Renaud. “She’s been taught he’s just her brother, and yes, he may be different, but still her brother.”

Danielle, 11, wrote a book on autism for herself and to share with others.

“He’s smart, nice and I love him. He’s just like a normal kid. I don’t think anything is wrong with him, he just has a disability,” said Danielle. “I treat him how I treat my friends. I have a lot of fun with him.”

Having Danielle volunteer has been a blessing, however, they also try to give her equal attention.

“You hear in the autism community, and probably with other disability children, that the other siblings are usually the forgotten children. We vowed not to do that,” said Renaud. “We didn’t think it would be healthy for the family to assume she was fine and didn’t need extra attention. We divide our time, do things together and juggle.”

Meanwhile, Mikey was struggling alone. As it was difficult for him to communicate, he would get frustrated and pull his mother’s hair or scratch her.

“The inability to not communicate has been the biggest obstacle. Through the years we have taught him to communicate simple sentences,” said Renaud. “He’s still non-verbal. You can have a conversation with him, but he won’t answer you.”

A third-grade student in a traditional class at Perez Elementary in McAllen, Mikey uses a computer device that allows him to do his work and helps him communicate. If a teacher says “good morning” he can type a response and the computer will say his reply.

Getting Mikey into a mainstream classroom was not easy. Renaud said a lot of schools don’t have the resources or training to deal with autistic children. Renaud, who has been in education for 18 years, currently with the Mission school district, understood how difficult it might be for the school to incorporate her son. However, she also believed in her son’s potential and didn’t want to settle with just special education classes.

“We spent a good number of years advocating for him. I’m happy to say the school he goes to now, starting from the principal to the entire staff has really instilled student success for all students,” said Renaud. “My son has a great team that works together to help him. He’s been excelling.”

The family still advocates for him at school and lets administrators know that these kids need continued support. The elementary has even had Renaud and her husband come in and train the staff and students to better prepare them to help autistic children.

“He’s always been in mainstream classes with other typical children and learned social rules,” she said. “He’s learned how to stand in line, wait his turn, take homework out and manners. He has definitely come a long way and been accepted as just another kid.”

Another obstacle many families with autistic children deal with is coverage of health insurance for various therapy sessions. Renuad said many insurance companies see autism as behavioral disorder and not a neurological disorder. So the numbers of sessions allowed are nowhere near what doctors recommend, which is 30-40 hours of therapy a week. Insurance only gives Mikey 75-125 hours per year.

“Once those are up and if we want to continue, we have to pay 100 percent out of pocket. Sometimes it’s $90 every 15 minutes so it’s very expensive,” she said. “The clinic in Austin costs $400 an hour and doesn’t accept insurance. That’s what families all over the country are dealing with.”

ACES has a charter bus and annually families visit Austin to discuss insurance reform, education in schools and bring more awareness about the needs of autistic children with state legislators.

Tolerance for autistic children is also difficult. In public, Mikey might have a tantrum and strangers have told her he needed a good spanking.

“We don’t believe in spanking so we have had to endure comments and looks. It’s just part of the lack of awareness within the community,” she said. “I know many families who won’t go out in public too much because they are afraid to deal with ridicule of their kid’s behavior.”

Danielle has had to endure ridicule, too, but she educated those that bullied her.

“Kids with autism should be treated equally like other kids,” said Danielle. “My friends would ask about Mikey and I would tell them what autism is and so they could understand and wouldn’t tease him. I let them know because I don’t want my brother to feel bad.”

There are several misconceptions associated with autism. Renaud said many people assume autism is mental retardation or a mental handicap, which could be true, but not always the case. Others also think an autistic child is artistic or a type of savant. Renaud said that’s only about 10-15 percent of kids. Another misconception is children with autism do not like physical touch, which is untrue.

“My son is very physical and likes to cuddle. He is also very emotionally attached. The prognosis said he would never be able to identify us in a crowd,” she said. “But he knows who we are and is attached to every family member.”

Through all the obstacles, Renaud said Mikey is a happy kid with a passion for life. He enjoys watching YouTube videos and listening to music; lately he’s been fixated on music by Jennifer Lopez and hip-hop. He also likes swimming, taking vacations and playing with his sister, Danielle.

“It’s hard for us. I can’t imagine how hard it is for him and other kids like him. Day after day,” she said, pausing to hold back her tears. “They are living in a very limited world offered to them; it’s hard but they do it. When I see him and he puts on a happy face, it drives me to not quit. He hasn’t given up on his love for life.”

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