A Mother’s Fierce Advocacy for her Child with Autism

You never know what direction life will take you. Just ask Lisa Cooper who recalls being the mother of two children, ages 10 and 15, in the midst of growing her law practice when she found out she was having another child.

“Life happens,” Lisa says matter-of-factly. “As it happens, my life took quite a turn. My daughter, Dharbi was kid number three and she was a kid I couldn’t control. I said to the doctor something is not right here. That began the referral and request for services.”

Lisa took Dharbi for early intervention. “Dharbi was nonverbal, all physical, basically climbing up the walls or all over me,” Lisa recalls. “She’d walk out the door and not look back, never seeming to wonder ‘Are you watching me?’ That created lots of safety issues. If her siblings went outside, she cried that she wanted to go outside. She would play nicely in the yard, but when she saw a car coming she’d run out in the street in front of the car, like she was playing ‘chicken’ with the driver!”  

After working closely with a team of early intervention professionals, there was some news. “I said I like my news straight, don’t sugar coat it,” she remembers. “They said my daughter may have autism. At the time, I hadn’t heard of autism and the coordinator gave me some information to research. I read a book on autism and I found my child in that book. She was 2 years and 9 months old when she was diagnosed, and services were available until she turned 3. I figured it can’t hurt. In three months’ time, I saw the first major turnaround for Dharbi. I saw a child who could start sitting for a minute or two.”

Dharbi went to preschool and eventually enrolled in Agawam public schools, but she was still behavioral, non-verbal. Agawam offered in-home services as well as support in a school setting. Lisa took advantage of funding that enables her to hire her own senior therapist and direct therapist, and to pay for activities of Lisa’s choosing. This approach requires a parent who will advocate for the child, and Lisa is a fierce advocate for Dharbi. She’s also fierce about ensuring her daughter, regardless of her diagnosis, has access to as many different activities as possible which will expose her to every opportunity. The same as any other child would have.

Recently, Lisa discovered a range of activities designed specifically for people with disabilities and their families, offered through CHD Disability Resources. “CHD makes programs accessible to people with special needs, but it’s the family aspect that really attracted me,” she says. “I think about parents who may be able to get services for their kid with special needs, but what about their other kids who don’t have special needs? All the attention that’s paid to special needs kids can bring up a sense of unfairness in families, or even animosity. Disability Resources offers activities where everyone in the family can participate. With other programs, they let you watch your special needs kid, and the siblings can watch, but CHD lets everyone take part. That makes a family more cohesive, and the special needs kids can learn from the typical kids. Maybe my daughter can learn from your typical child, maybe she can learn the skills of verbal language by communicating with her typical peers. The family inclusion piece that CHD offers creates those possibilities. It’s huge.”

The favorite Disability Resources activity that Dharbi has taken part in was waterskiing. “She’s already talking about going next year,” says Lisa. “She’s so excited about it, sometimes that’s the only thing she talks about! You have to find out what your kid enjoys and you don’t know what that is until you try. She did rock climbing and when she seemed like she was done I pushed her to keep going, just a little bit more. When you feel like giving up but you go just a little bit more, it’s a huge deal. It was for Dharbi. Next, she wants to try sled hockey. CHD offers activities not normally offered by other organizations, plus the more common things and at a more reasonable price.” That matters especially for parents with a disabled child.

Completely embracing her role as Dharbi’s advocate has changed Lisa’s life—and Dharbi’s. “A parent who saw my kid 5 or 6 years ago would not realize that they’re seeing the same kid if they saw her today,” says Lisa. “And her exposure to programming like CHD’s Disability Resources has helped in that transformation.”

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