Being Your Child’s Advocate

Being Your Child’s Advocate

shutterstock_11429527Parents share their experiences when children are diagnosed on the autism spectrum.

Eileen Hawkins remembers how her 2-year-old son Grant could identify every car in a parking lot — both the make and the model. “The first time he did that I looked at my husband and said, ‘Did you teach him that?’ And he said, ‘No, did you?’”

Later, Grant’s kindergarten teacher asked Hawkins where her son had learned to talk since he spoke so formally. “Instead of saying, ‘I’m thirsty,’ he’d say, ‘I’m parched,’” Hawkins says. Beyond his speech, she ­noticed other differences between Grant and her two older children. If she told him she was driving to grandma’s house but then had to change her plans, he would become unhinged. Social gatherings were a ­burden — and her son struggled at school.

“I couldn’t put my finger on it, but I knew something wasn’t quite right.” Eventually, her son was ­diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and dyslexia. Still, Hawkins thought there was something else going on. When she read online about Asperger syndrome, she knew what she found described her son. At age 8, her son received a formal diagnosis of ­Asperger syndrome. By that time, Hawkins says it was a relief to have her concerns about her son validated.

Today, Grant is attending high school and making plans for what to do after graduation. Like any other parent, Hawkin’s goal for her son’s future is for “him to be happy with whatever it is he decides to do.” Yet, she understands his road will continue to be a challenge. She now counsels other parents as part of her role as president of the Autism Society of Greater Cleveland. Part of her message to other parents is this: “There’s so much more out there when it comes to support services for families in terms of awareness and intervention than there was 10 years ago.”

The Hawkins family is just one story of how these ­developmental disorders affect the community. Parents with children who have autism or ­Asperger’s share their advice on how to connect with other parents and service providers to help children reach their full potential.

Importance of a Diagnosis

One in 88 children born in the U.S. is on the autism spectrum.

“Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development,” according to Autism Speaks, a non-profit organization that promotes awareness for spectrum disorders. “These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and ­Asperger syndrome.”

For most children, the autism diagnosis doesn’t come until after age 4 — for children with Asperger syndrome it’s age 6. Yet, early diagnosis is key since intervention can help children develop the skills and techniques needed to communicate, socialize and learn.

“If we can identify [children with autism] before certain behaviors are deeply ingrained, we can make a difference sooner and the children will have a much better outcome,” says John Duby, M.D., director of Developmental-Behavioral Pediatrics and the medical director of the Family Child Learning Center at Akron Children’s Hospital.

Duby has been involved in statewide efforts to ­diagnose children with autism at early ages and to connect their families with support services. “Our goal is to have every child with autism diagnosed by age 2.5. By 18 months of age, 95 percent of children with autism are showing signs and symptoms.”

The following are some behaviors parents can watch for if developmental concerns are present:

• Your child doesn’t respond to his or her name by 6 months of age;

• Your child doesn’t establish eye contact with you when you speak to him or her; and/or

• Your child doesn’t respond to ­visual cues such as smiling back to you, playing patty cake or peek-a-boo by 9 months of age.

Duby recommends that parents work through their child’s pediatrician or contact an organization that provides autism support services if they are concerned at all. “We know that if a parent is concerned about their child’s development, 85 percent of the time they’re usually right,” he says.

Expanding Your Child’s Team 

For parents who have a child that was recently placed on the autism ­spectrum, it can be an overwhelming experience.

“Once you get the diagnosis it’s kind of like, ‘Now what?’” says Ilana Hoffer Skoff, a parent of a child with autism and the executive director and co-founder of Milestones Autism Organization in Beachwood.

She started her organization in 2003 to fill the void. “When we started there was one consultant in town [who offered developmental support services], now there are dozens,” Hoffer says.

Milestones offers a variety of services from conferences and classes to educational materials. “We want to link people to available resources,” she says.

Even with a greater awareness and services, children with autism — and their parents — can face unique challenges when it comes to school.

She suggests that parents work closely with school staff to help their child get the services they need. “Parents should try to have a team concept — it’s Team Adam. It’s Team Melissa. It’s the team for that child. The school is part of that team. Through Milestones, we want them to see they aren’t isolated. We want people to ­understand that it’s good to get other people involved.”

“A very important thing is for parents to remember they are their child’s advocate and they know their child best,” Skoff says. “As a parent, I’m continually learning from my children and I appreciate seeing things from their perspective. Certainly, with a child with autism, or any difference, giving them time to see things from their perspective is eye opening. Sometimes I think that I have to ­remember — just because I want to do things a certain way — doesn’t mean it’s better.”

Planning for the Future

Envisioning the future you want for your child is key to helping them develop the skills they need to get there. Skoff says parents should “work backward.” Parents need to think through what they want for their child and then break it down into steps. Sharing this vision with your child’s school team can then ensure everyone has the same goal in mind.

“If the school team hasn’t already brought it up by the time your child is 14, you need to discuss how to get your child ready for that transition into adulthood,” Skoff says. “These long-term goals may involve higher education for children, employment or how to help them live on their own.”

For Hawkins, part of helping her son plan for his future involved recognizing what he has to offer others. “Every kid has their own set of gifts,” she says. “Grant has some really good qualities that I do cherish, but he also has some serious struggles. You have to let your own child be what they can be and not hold them back because of a label.”

For events to support autism awareness, please see here and here.

For support organizations in Ohio, please see here. 

About the author

I’m a freelance writer, recipe developer, and—most importantly—mother of three. My work has appeared in KIWI, Parenting, Parents, Relish, USAA Magazine, BabyZone.com, BettyConfidential.com, and Yahoo Shine!. I’m currently a contributing editor for MetroParent magazine, the regional parenting publication of the greater Detroit area.

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