Special Needs Now

What's It Like to Have a Child with an Invisible Disability?

One mom sheds light on the challenges of living with her son's invisible disabilities.

Boy with invisible disablity Courtesy Crystal Lynn

Disability comes in many forms, and although a child may not be in a wheelchair or have obvious medical supports, it's still very possible that he or she has special needs.

This point is driven home to me whenever I take my autistic son— who doesn't appear to have special needs at first— out in public, and people shoot us odd looks as he faces sensory overload or has a meltdown. Even with that in mind, however, I hadn't given the idea of invisible disability much thought until Crystal Lynn, a fellow mom to a child with special needs, sent me a note on Facebook after we published our 2015 Special Needs Now Wrap Up.

In her message, Lynn expressed frustration that so much of our coverage focuses on autism, Down syndrome, and cerebral palsy. Of course, she said she understood why we cover those disabilities so regularly—they're often in the news, research comes out frequently, and myself and other writers are raising children with these disabilities—but she wanted to draw attention to other special needs as well.

Lynn's son, pictured here, is a 5-year-old who has Loeys Dietz Syndrome, a serious genetic heart condition which is rarely discussed outside of places like some of the Facebook groups Lynn's a part of. Additionally, her son has sensory processing disorder and a short attention span. Even with all these challenges, Lynn notes that her son, "can barely get any help simply because there's not enough research on his conditions. Congenital heart disease is the leading cause of death in children, 1 in every 100 children will have CHD, but it only gets a FRACTION of a penny of government funded medical research."

I was surprised and saddened to hear these statistics, though I know from experiences with my own son that securing therapies and support can be very difficult without having an official autism diagnosis or a similar medical acknowledgment of a child's disability. What I hadn't realized, however, is how tough other aspects of daily living are for kids with challenges like Lynn's son.

"My son cannot even run fast enough to become out of breath because it could be fatal," Lynn says. "He was kicked out of preschool simply because the teachers 'didn't feel comfortable having him.' He's currently home-schooled, because going to school is not an option. He'd miss too much school because of doctors' appointments, but he didn't qualify for an IEP, so I don't have an official reason to keep him out of school. He does have a 504 (due to his disorder), but I was told that schools don't have to follow a 504 plan."

This is really tough indeed, and Lynn's working hard to help create options for her son by having him evaluated by different psychologists, so he can get the support he needs. Since only 3,000 people share her son's heart condition worldwide, however, she often finds herself educating doctors about it. When I asked her what she wanted other parents to know, she said this: "My son and other children with medical issues like his are usually 'too much' for some people to handle simply because those people are ignorant when it comes to these types of disabilities. We need to bring heart disease, genetic conditions, and other invisible disabilities to the front line, so people know that there is nothing wrong with our children and so our kids can get the help they need."

The Invisible Disabilities Association hopes to do much the same, and it's currently running the "Invisible No More" campaign, to "bring awareness to the challenges of living with invisible disabilities, education to friends and family and support to those living with debilitating conditions."

I'm so grateful that Crystal reached out to me and shared her story, and I hope to raise awareness about invisible disabilities now that I know more about them. In the meantime, please feel free to share your own stories in the comments—we look forward to hearing from you!

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com and Twitter @jamiepacton.