Parents of children with special needs face particular challenges when it comes to the education of their children. While federal law requires that all children with disabilities have available to them "free, appropriate public education," many parents say it's a fight to ensure their child's particular needs are met. Others discover that programs and services -- whether public, private, or non-profit -- are often inadequate, costly or difficult to access. We explore the challenge of getting appropriate educational services for special needs kids.
See below for some of the stories parents shared with us.
Parenting A Special Needs Child: Advice, Challenges And Reflections
When a young child is diagnosed with a disability or special needs, many new parents find themselves confronting a whirlwind of emotion, while adjusting to a steep learning curve of medical terms, acronyms and a maze of local institutions.
We asked listeners what it's like to have a child with special needs and received dozens of responses through the Public Insight Network. These are excerpts from the inquiry, which illustrate the range of experiences and challenges faced by parents of children with special needs.
"For military families, the stress of the last decade plus of deployments into harm's way has been hard enough. When you combine that with raising a child with special needs, the stress increases tenfold. The constant moves of military life create an even bigger burden as we have to recreate the support network for our children and our family every two or so years." - Jeremy Hilton of Burke, Va.
"With all the challenges we have faced, we believe our son has made us see the world in a different, and in many ways, clearer and brighter way that we otherwise would. In our house, we celebrate successes that many families take for granted as a part of their children's normal development -- and therefore we have had much joy and celebrations that far outweigh the challenges we've endured." - Jennifer Berzok of Bethesda, Md.
"The supports are very good, the need feels infinite." - Bradford Lang, Rockville, Md.
"It is so hard. Help a mother when you can. Ask to volunteer at school or another organization that gives respite care." - Katherine Walker, Woodbridge, Va.
"I cannot go back to work because nobody will take care of my child." - Maeve O'Connor, Alexandra, Va.
One of the questions included, "Have you found the available services/support systems (government, non-profit, community) to be adequate?" Laced throughout the variety of responses, some words like "community," "time" and "help" appeared more frequently than others.
Parents Share Their Stories
Erin Croyle’s son, Arlo, is 2 years old. “We found out that he had Down syndrome just shortly after his birth, and it hit us like a ton of bricks.” When the family moved to Alexandria, Va., after her son’s birth, Croyle and her husband had trouble finding support services. But they eventually tapped into local services and support.
Liz Burdick's son, 10-year-old Harry, was diagnosed with Autism at age 2. He is non-verbal, and until the age of 7, his parents believed he was cognitively impaired. That changed when Harry learned how to type. One of the first things he wrote to Burdick: "I want friends."
Heather Alderman lives in Arlington, Va., and she is the mother of a 6-year-old with an Autism diagnosis. “You can’t know everything in the beginning,” Alderman explains. “A lot of what I learned was really 20/20.” She emphasizes the importance of parents working with each other, and sharing experiences of what works and what doesn’t.
For many parents, their child’s diagnosis triggered major changes in their careers. Unhappy with the education services offered in the public schools in College Park, Md., Heather Rivas decided to home school her 6-year-old son, who has been diagnosed with Autism. Like many parents, Rivas found herself navigating unfamiliar waters. “I don’t have a degree in teaching. But when it’s your child, you rise to the occasion, as I’m sure most mothers do.”
All parents seek to balance their impulses to protect their children, while encouraging independence. But parents of special needs kids confront an additional set of concerns. Stephanie Smith Lee is an education policy expert and the mother of Laura, an adult with Down syndrome. Laura completed the Mason LIFE program, a post-secondary program at for young adults with intellectual and developmental disabilities. Students have the opportunity to live independently with support and a focus on life skills, but also to be included in general curriculum classes. “It’s always hard as a parent to allow our kids the dignity of risk,” Lee explains. “But if we don’t they are not going to have the opportunity to be successful.”
What suggestions, resources or advice do you have for parents of special needs children? Tell us in the comments.