Every parent has their struggles as a working parent. 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.
The list of issues that parents have when trying to work when they have children with special needs includes all these issues and a lot of others.
Our children are at the doctor’s ALL the time. Currently, D is pretty healthy and we rarely see his pediatrician. But he currently has 5 specialists currently following him.
Our kids go to therapy multiple times a week. We’ve had as many as 7-8 therapy visits during the week before and that isn’t unusual for families.
Many children with special needs deal with behavior issues. These are complicated issues and frequently mean many calls from the school or daycare to come pick up your child. Luckily we haven’t had to deal with this one but I know many families that do.
Things can change in an instant. Your child is doing totally fine and then suddenly they are in the hospital or having behavioral meltdowns all the time. For us, D struggles with an as yet 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 somewhere 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 started thinking maybe I could work. But our life is SO unpredictable because of him that 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- Daniel not letting me get there on time and having to leave for appointments for him, and the fact that I have worked with children literally my entire life and I’ve become really burnt out working with kids. It wouldn’t be good for me or them. That really just leaves online jobs. But even that would have to be super flexible.
One of the biggest challenges that parents of Special Needs children experience is just being able to go to work. These kids are VERY expensive and the financial stresses this places on parents can be very 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. Because of all this, most two-parent families have one parent who cannot work who must stay home to take care of their special needs child. Those who don’t have a 2 parent household often have to make a choice between important therapy for the child and working. Many parents are drastically underemployed because of this as well. 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 there’s a problem.
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