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.
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.
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 mouth, 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.
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, specialists, 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 to all of Kevin’s school team people than I do B’s teachers. His meals take longer. His dressing takes longer, he takes longer to walk places. It adds up, doesn’t it?
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 by itself. Time constraints are one of the main reasons that many moms like us are unemployed or underemployed.
Hidden Social and Emotional Costs of Parenting
It’s human nature, that we gravitate towards people who have common interests so special needs families end up together too. After all, we’re at the same medical facilities, therapeutic facilities, and special 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 tos” really allows very little time for the “want tos.”
Just the other night I had to pass on a moms night out because I had another commitment with K. We often have to sacrifice social outings and friendships because sometimes we just don’t have any time or “us” left to give. In all seriousness, we have a social group on Facebook for local parents who spend extraordinary amounts of time at the local children’s hospital. While I like the group and love the support, think about that for a minute. That our social group is based on frequent trips to a hospital.
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.
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 “children” their entire lives because they are unable to live independently.
Do you know what swim diapers for a big kid cost? They’re not cheap. I have fewer special needs clothing options for clothing for him. Fewer food options since he has ARFID, fewer shoe options, it all adds up. I usually cannot shop 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 the 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 $900. 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 (disability community) scream so loudly at any mention of budget cuts, or decreasing services or anything “less.” We are already paying a tremendous price for having a child with special needs. 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.