We Need More Options for Working Parents of Kids With Disabilities


Many parents have their struggles as a “working parent.” Perhaps it’s the guilt from being away from your child, the worry that you are making the wrong decisions, the child-care worries of who will watch your child while they are sick or during summer break and the financial burden. These are real and difficult struggles.

Parents of children with disabilities struggle with these issues and a few others.

Some of our children are at the doctor’s office often. Right now, my son, D, is pretty healthy and we rarely see his pediatrician. But he currently has five specialists following him.

Some of our kids go to therapy multiple times a week. We’ve had as many as seven to eight therapy visits during the week and that isn’t unusual for some families.

Some children with disabilities deal with behavior issues. These are complicated issues and could mean calls from the school or daycare to come pick up your child.

Things can change in an instant. Your child is doing totally fine and then suddenly they are in the hospital or having a meltdown. For us, D struggles with an undiagnosed sleep disorder. Some days, it’s impossible to wake him up and all plans are canceled until we can get him awake. Other times (thankfully less frequent) he doesn’t sleep for 40 hours and I’m afraid to take him anywhere in case he finally does fall asleep and then I can’t move him and I’m stuck.

As both my children are in school now and things “seemed” on some levels to be calming down with D, I thought maybe I could go back to work. But our life is so unpredictable no employer would be that understanding with a job. I would need to be able to work while the kids are in school because my husband’s work hours change constantly. That knocks out a lot of jobs. I could work at the school, but there are two problems with that: not getting there on time when D has a rough morning or having to leave for appointments for him — and the fact that I have worked with children my entire life and I’m burnt-out from working with kids. It wouldn’t be good for me. That really just leaves online jobs. But even that would have to be super flexible.

In my opinion, one of the biggest challenges that parents of children with disabilities experience is being able to go to work. Sometimes we have extra expenses and the financial stress this places on parents can be heavy. This is one reason programs like Medicaid are a real lifesaver for families. It helps pay for all the medical visits and prescriptions, but it also provides in-home and community-based services to give parents and caregivers a break.

Many families have one parent who stays home to take care of their child with disabilities. Singe parents often have to make a choice between important therapy for the child and working. Many parents are drastically underemployed because of this as well. I believe something that really needs to be looked at is a way to find better solutions for our families to be able to work and be self-sustaining. I don’t have the answers, but I know it’s a problem.

A version of this post appeared on An Ordinary Mom.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by PRImageFactory

TOPICS
,
JOIN THE CONVERSATION

Related to Hypersomnia

A Letter for Anyone Who Doesn't Realize The Challenges of Idiopathic Hypersomnia and Narcolepsy

I wrote the following letter for members of several idiopathic hypersomnia and narcolepsy support groups on Facebook. Some people have personalized it as they see fit, and I have sent out personalized copies for a few hundred others. I don’t know the exact details of the struggles faced by people with other invisible/chronic illnesses, but [...]

Relief: Receiving an Autism Diagnosis as an Adult

I’m often asked what it felt like to get an autism diagnosis at age 36. As an active autism advocate, writer and public speaker, when I say often… I mean often. I struggled for a while with how exactly I could describe that moment. One day I realized I was struggling not because I didn’t have [...]

The Day I Set Sail in the Storm of My Son’s Pelizaeus-Merzbacher Diagnosis

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s [...]

To Susan Boyle, You Don’t Have to Apologize for Your Meltdown

Dear Susan Boyle, To have a high public profile where your movements and vulnerabilities are recorded must be so difficult to handle. It was with sadness we read firstly of your meltdown at Heathrow Airport and then later, a report that you felt the need to apologize. A meltdown is the result of an unmet need [...]