By Jill Grubb
April 8, 2014
Who loves to read, show miniature horses, garden with her grandmother, and help her mom check her mom’s grades? Who inspired her aunt to work for a Masters degree in Occupational Therapy? Who looks just like your children but needs thirty seconds more? Abby, a joyous little nine-year old who happens to have Downs Syndrome.
Many of these children need therapy to learn how to use muscles, even the tongue. Abby has speech apraxia. Early intervention included speech therapy but also helped her interact with other children. Her mom taught her to sign “more,” “eat,” and “milk” at five months. She still had trouble speaking and sucking because of those muscles.
When Abby was 18 months, the family lost early intervention from Whetstone because a renewal levy failed, twice. Jackie Kincaid, her mom, said, “It felt like the sky crashed.” No waivers to pay for services, no respite care, no break, no resources for trusted childcare. She even lost the support of other parents who had been helped by early intervention. Hardly any time with her husband.
Jackie decided this was “not a prison but a gift.” As a parent representative with Families and Children First, she has lobbied with the camp Recreation Unlimited to find some funding for these children to interact with each other and give the families a break. So far she’s hopeful. She takes Abby to Delaware Speech and Hearing every Friday, at her own expense. Abby loves it. Although her speech is still limited, Abby now has a speaking device that looks like a sturdy I-pad. She types in words and a young girl’s voice says them, releasing her from the prison of a tongue that still doesn’t work properly.
Jackie also provided some books on Downs Syndrome for the special ed teacher to read to regular classes. She believes the more people understand, the better, and the less Abby will be the object of stares.
The whole family’s involved. The grandparents show Abby how to hold her hands to catch a ball. Her father helps her with her homework while Jackie helps the younger daughter with hers. They are exhausted but persistent, even though parents also need therapy they don’t receive.
Chad Richey, whose daughter Chayanne died at age 12, sang to his daughter to teach her her address, phone number, and other important information. At first she qualified for early intervention and went from 30-40 words to 250 words in a month. A combination of occupational therapy, physical therapy, and speech as well as interaction with other children made a difference. When the levies failed, she lost all services and her dad had to stop working to take her to Children’s.
Services that would be provided if the levy passes will give these families the resources to help their children lead full lives. Without them, they must struggle on alone.
Rhonda’s son was diagnosed with autism at age 4. At that time, a therapist from MRDD came to their house. Hunter, now 17, had speech therapy, physical therapy and Occupational therapy, and also saw a psychiatrist through MRDD. He also went to Pre School, so important to help kids learn to interact with others. In many cases, if a child doesn’t learn to talk by age seven, he won’t ever.
When the levies failed, Rhonda refused to be a prisoner in her own house. Many parents are restricted to their homes because their children are disruptive in public and the parents have no respite care to allow them to go out food shopping or anything else. Rhonda obtained a self-waiver to educate the community.
Pizza Hut agreed to let her bring her son there very early in the morning so he could learn to sit down without bothering a lot of people. At first he yelled but then quit. The community center has been supportive, welcoming Hunter and understanding his stimming, or humming or making erratic noises. People there are learning not to stare but to just say hi.
When Rhonda’s son started through puberty, she noticed he was bruised all over from pinching himself. At that point she had to stay home, missing six months of work and finally having to quit in order to protect him. During that difficult period, he would hit and pinch family members. When he hit her in the head while she was driving, she was forced to secure him in the back seat. Finally she had to tie his ankles so she wouldn’t have an accident. Again, if she could have had someone come in to watch him, she could have gone out without him, but that service was not available.
After saving for several years, she took her son to Panama, where she didn’t speak the language, to have stem cell surgery to help the side of his brain that controlled speech. It seems to have helped and he can talk.
Hunter’s older sister is a self-provider taking classes at her own expense. She accompanies him and explains what is happening to people around them.
Hunter is affectionate. He reads his mom’s emotions and asks if she’s okay. She says God gave her Hunter to learn patience.
Consider helping the 172 families who are on a waiting list for intervention from the MRDD by supporting the levy on May 6.