by Matthew Newell
For parents of children with special needs, healthcare professionals have more than the responsibility to diagnose—they have the responsibility to offer solutions.
Recent research conducted by Harris Poll (a division of Nielsen) and commissioned by the Family Hope Center found that 83 percent of parents with a child under age 18, diagnosed with a special need, receive “conflicting information or recommendations” about their child’s care.¹
Who is providing the most accurate diagnosis? Who is prescribing the best form of therapy? For most parents, no clear answer emerges. Moreover, this confusion only compounds the helplessness parents feel when told their child’s condition cannot and will not improve.
First, a feeling of desolation and abandonment. Then confusion and uncertainty. So what comes next?
The study finds that nine in 10 (89 percent) of U.S. parents of a child diagnosed with special needs believe they themselves, or their spouse/partner, have the best understanding of their child’s development. The research finds that 90 percent of these parents also believe they or their spouse/partner have the most impact on their children’s development.
Not doctors, not specialists, not Internet message boards…it is parents who best understand their children, and are in the best position to guide their children to positive outcomes.
So how many parents think the healthcare professionals have the best understanding and most influence? In each case, less than 5 percent (4 percent and 3 percent, respectively).
What does this data mean?
We know parents of struggling children are the embodiment of resilience and strength. Aside from their role as caregivers, they have to wade through conflicting information and weather the emotional ups and downs of lost and restored hope.
But the study proves what parents have long understood. Parents filled with hope can make a difference in their child’s quality of life because they know what their child’s potential is.
That why it’s important for parents to work with their doctors and medical care providers as partners instead of taking every word and treatment recommendation as the best option. The amount of time doctors and medical professionals spend with each individual child is almost insignificant compared to the amount of time parents spend with their children. While medical professionals have a child’s best interests in mind, sometimes they overlook what the child can do well and fail to see how parents can aid their child’s development when recommending treatment. Parents should trust their guts when it comes to treatment options. If something doesn’t feel right for their child, it probably isn’t.
Also, parents should not hesitate to ask questions if they disagree about care or treatments when discussing options with professionals. Parents should seek out a treatment plan that gets to the core of their child’s specific difficulties, and work with professionals who treat their child as whole person, not just as a collection of symptoms.
I see parents from around the world who feel helpless about their children’s future, but once they come to realize how well they know their child and how they can impact their children’s lives, the change is palpable. With the right support and partners, parents can have a powerful, measurable impact on improving their child’s conditions and their quality of life.
Don’t give up, trust your gut and find treatment that you believe in—because trusting yourself and remaining optimistic is imperative to your child’s future.