Parenting a Disabled Child

This has been an issue that’s been on my mind lately due to a few things I’ve read and encountered. As usual, I’m trying to organize it in my head and not having as much success as I’d like. I preemptively apologize for rambling.

I’ve been thinking about money, finances, time, friends, and what has changed due to having a child with disabilities. I want to be clear–I am trying to learn as much as I can about ableism, and I do not see these things as my child’s fault.

It costs a lot more than your loose change if you are raising a disabled child.

It’s the support system (or lack thereof) that is built up around the disability community that causes this. And society as a whole. These extra costs don’t occur because my child is disabled. They occur because our society is not set up to support disabled people.

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There are many hidden costs associated with raising a disabled child which just adds to our stress levels. Several times a month I find myself purchasing something that probably regular parents don’t need to buy.

How much does it cost to raise a disabled child? Too much!

As a society, we completely suck at valuing family over money. The media and politicians cry “no family values!” out of one side of their mouths, all the while allowing businesses legislatively to NOT give family leave. (And bashing politicians who try to do so!)

Whether you’re caring for yourself, a parent, or a child, it is the rare company that makes accommodations for you and pays you to do so. During all of K’s diagnostics, I too was pulled aside for “the talk.”

I was told that I was missing too much work and did I need some FMLA (unpaid, of course since I had used up my paid time for maternity leave). And this is a company that is better than most as far as family leave.

Our society just isn't set up to help with the added costs of being disabled. And it's hard on parents.

When you’re expecting a baby, there is no shortage of lists of what to buy for a newborn baby and all kinds of cost calculators.

But no one talks about the costs of special needs parenting.

So what are some of the hidden costs?

Hidden Time Costs of Special Needs Parenting

I had to sign  K up to receive some short-term, intensive therapy. I drove to the facility (45 minutes each way) every day for 3 weeks and stayed with him while he receives 60 minutes of therapy. Minimally, after taking him to school afterward, I killed 3 hours of my every day. What working person can do that?

I know of a mom that drives over an hour one way to take her child to a private placement school in Chester County. Seems crazy, until you hear her story that they have tried every school in between and this is the first school that has allowed him to progress. At $3 a gallon for gas, plus her time, that adds up year after year.

I know that we spend more time on the phone with teachers, and specialists, and on hold with insurance companies. I’m actually finishing this post while I’m on hold with my insurance company. We have to drive to schools and specialists that are farther and pick up equipment and supplies at suppliers and pharmacies.

I am positive that I communicate more often and more in-depth with all of Kevin’s school team people than I do with B’s teachers.

Yet another article on the Huffington Post caught my eye recently. If I’m being honest, something about the tone of the article bothered me.

A mom, in her struggles to get her brain organized, did a flow chart of the village it takes to raise her kid and support her family. Indeed it does take a village. I think her exercise, as she stated in her own blog, was to help create understanding.

To help others realize exactly how much she is dealing with. I don’t even try to do that anymore, because unless you’ve been handed these situations, you never really get it. And I’m kinda beyond trying to get people to “get it” because that’s just a waste of time that I do not have.

But one of the underlying messages of the article is how she has become a case manager, as usually happens with moms of kids with disabilities. We are our kids’ case managers and so much more. That is a part-time job in itself. Time constraints are one of the main reasons that many moms like us are unemployed or underemployed.

Hidden Social Costs of Parenting

I recently was at a fundraiser breakfast once for a softball team. I noticed how all the parents seemed to know each other. They probably do, as these girls spend a tremendous amount of time together. I have another friend who has a daughter very much into traveling soccer, and that seems to have consumed her social life.

It’s human nature, that we gravitate toward people who have common interests so our families end up together too. After all, we’re at the same medical facilities, therapeutic facilities, and disability schools together.

The difference is, I have little choice. My son has not chosen to play softball or soccer, this is what we were handed. And the time constraints of all the “have to” really allow very little time for the “want to.” All those “have to” activities always take longer than they should.

There’s really no one to help. Our medical system is set up on an ableist foundation. It is disabled people who need to access the medical community most frequently, and it is not accessible.

I’ve said before, aside from his seizures, I wouldn’t change a thing about him. But why is it that there is so little support from society?

I’m not mourning or being angry over who he is, I’m pissed off that there are people trying to take away his health care. And that I have to spend hours of time getting his health care paid for by our insurance companies.

I’m mad that I have to sometimes sit in a waiting room for over 2 hours to see a physician for a scheduled appointment. For the most part, even though most of his providers are within a 20-minute drive of our home, I have to plan for a half-day event for each appointment he has.

Hidden Financial Costs of Raising a Disabled Child

Special foods, co-pays, special clothing and equipment, gas and car expenses for driving to specialty places, extra child care to care for other kids while the first kid goes to appointments, the list goes on and on.

And that’s only while they are a child/minor. This doesn’t even account for families who have their offspring spending their entire lives at home because they are unable to live independently. SSDI does not provide much.

Our capitalist financial system is a shambles anyway and it’s difficult for 1 or 2 adults to retire comfortably. Try having 2 working people, and planning a retirement for 3.

Do you know what swim diapers for a big kid cost? They were not cheap. I have fewer special needs clothing options for clothing for him. Fewer food options since he has ARFID, and fewer shoe options, it all adds up. I usually cannot shop for sales or just buy whatever is cheapest.

If your child has frequent seizures, a g-tube, or other medical issues, it’s not like you can hire a local teen down the street to babysit. No, we have to hire adults or older teens with training, and that comes at a cost too.

We could duke it out with our insurance company over some of these issues, but that takes a toll on your time (see above) and your sanity. I don’t have the mental energy to fight every battle. None of us does.

My son needs a stroller and I am getting ready to do battle with the insurance company over that. He is mobile, which is where I will likely have the hassle. But trust me, he needs it. Know what a large child/teen stroller costs? About $2300. And I know of many families who have had to pay for them.

Did you know…

If you are a disabled person living on SS and Disability Income, there is not one affordable housing market in this country for you. Not one.

There is not one place where you can get a small apartment and live on your own without struggling month to month. None with sustainability.

Why Disability Advocacy Matters

So what is my point? I do have one. My point is, this is why we (the disability community) scream so loudly at any mention of budget cuts, decreasing services, or anything “less.” We are already paying a tremendous price for having a disabled child.

It has not just cost us extra money, it has cost us extra time, it has cost us friendships, family time, job promotions, seeking further education for ourselves and so much more. We cannot afford any further cuts to our programs and services.

And parents, I know we’re short on time. Believe me, I get it. But we have to speak up more. When you see legislative calls to action, particularly those around funding, we have to call, we have to email, we have to contact our people.

When we see an idea on Facebook that we see others bashing (such as Obama’s executive orders for paid leave) we have to speak up.

We don’t have to waste time debating people, but a simple, “Actually, this would be a tremendous help to me and my family.

Author’s note: This post was originally written in 2013 and I updated it as part of an ongoing restoration of this site. If certain things seem out of context with the publication date, that is why.

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