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, so I preemptively apologize for rambling. I’ve been thinking about money, finances, time, friends….and what has changed due to having a child with special needs.
There’s a blog post floating around right now, and it’s a mom telling a story of her sick child. It started out as just a cough and has progressed into much, much worse. For now, the baby appears to be improving and of course we all hope that is the case. But other bloggers have rallied around her and are doing a fundraiser because she is in danger of losing her job, due to being at the hospital with her baby. As a country, we completely suck at valuing family over money. Then the media and politicians cry “no family values!” out of one side of their mouth, all the while allowing them legislatively to NOT give family leave. 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, calling out too much 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?
Time
Just recently, it has been recommended to us that K receive some short term, intensive therapy. I will have to drive to the facility (1/2 hour each way) every day for 3 weeks and I’ll be with him while he receives 60 minutes of therapy. Minimally, after taking him to school afterwards, I’ve 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 school. 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 $4 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 own insurance company. We have to drive to schools and specialists that are farther, pick up equipment and supplies at suppliers and pharmacies, and 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, you just don’t. 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 special needs. We are our kids’ case managers and so much more. That can be a part time job by itself. The time constraints are one of the main reasons that many moms like us are unemployed or underemployed.
Emotional and Social Costs
I was at a fundraiser breakfast a few weeks ago for a softball team. I was noticing how all the parents seem 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 a traveling soccer team, and that seems to have consumed her social life. It’s human nature, that we gravitate towards people that 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.
Financial Costs
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 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.
So what is my point? I do have one. My point is, this is why we (special needs 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’ve already paid dearly, please don’t ask us to chip in more.
Writer, blogger and Special Education Advocate. WAHM to two boys and two dogs, plus a husband. Metropolitan Philadelphia area, Pennsylvania born and raised.
Great post! I too have ‘paid the price’ of being the mom of two special needs children. I was fortunate, they could go to schools in our district or close to it, so there wasn’t as much driving back and forth. But the sheer amount of time I spent in Dr.’s offices, therapists’ offices, getting evals done, fighting w/Social Security and other govt. agencies, working the school system, and on and on. I was talking to my now adult daughters the other day and they asked me if I ever resented having to give up career plans and work around their needs. Honestly, only on occasion. They are my delight, their every progress and success is partly mine (or so I tell myself.) Without me having gotten them to therapy, early intervention, dr’s offices, fighting the system for them they would not be where they are today. But it came at a huge cost. I had to adjust my life plans from a highly paid career to one where I was able to work around my children. I was so lucky to work for a man who believed ‘family first and always’ and who insisted all the women or men in the office took time off when they needed it. Everyone should have a Dr. G. in their life if they have a child w/special needs. As an adult I am still ‘the power behind the throne’… teaching them to be their own advocates, make their own phone calls, do it all themselves. Sometimes I just want some time off, but I know I won’t get it unless I put in the heavy duty time now. I need for them to be a success at becoming indepent, because there just isn’t another option. I won’t have them sitting around doing nothing and having staff do everything for them. They are capable, with assistance. So, I assist, for now. So they can do it on their own later.