Sunday, October 23, 2011

The Price of Disability

I mentioned in an earlier post that we are Officially Broke. This is both accurate and hyperbolic. We are broke in the sense that we live paycheck to paycheck, and often dip into our overdraft (thank GOD for overdrafts!!!!). We do not eat out/frequent vending machines at work/buy ourselves much. Our kids wear clothes from Savers, where you can get six pairs of jeans and six shirts and a winter coat and a crock pot for $38. (The catch is, it’s all been worn or cooked in by someone else.) Lars and I do not buy our clothes at Savers, but then again we don’t buy clothes at all, unless something is too holey or stained to be justified. Then we wait until that and the next three stained and holey items are repurposed as “gardening clothes,” and with a sigh we make a trip to Target.
Things we do spend money on: violin lessons (Benjy), voice lessons (Saskia), limited (and cheap) summer camp doings (Saskia – Ben cannot manage summer camp). I spend more than I should on printer paper and ink cartridges. This is what I meant when I accused myself of hyperbole. We are broke but not, strictly speaking, poor. We do usually end up staring at each other in dismay as the month draws to a close, and I do frequently weigh the pros and cons of a week of Food Club mac and cheese for dinner (that’s the $.89 brand). But we own a decent if tiny house, and two functional if ratty cars, and we are neither cold nor hungry. I am so grateful for that.
No one signs up for being broke, just like no one signs up for a disabled child. But I bet if you surveyed families with disabled children you would learn that a large number of them have one parent who cannot work (unless there is only one parent, in which case it’s either work – somehow -- or welfare), a large measure of debt, and not much left over at the end of the month.
We are one of those families that has two parents but only one who is able to bring in much of a salary. Last spring I made the painful decision that work would have to be significantly curtailed. But work, for me, has been no more than simply a way to help keep our family afloat for a while now. Whatever aspirations I had – and I did have some – faded when Benjy’s autism took over; there was neither time nor energy for anything beyond meeting his needs.
I probably could have had a pretty good career. I’m an English professor, but I will never be tenured, or even tenure track. Benjy came along just when I was poised to snag a good job (book from Cambridge, one of the two or three top university presses in the world; articles in top-tiered journals. Lots of teaching experience, and students who loved me). So I gave it up. Soothed tantrums, oversaw therapies (30 hours per week). Emulated occupational and physical therapists. Tried to get him to talk. To crawl. Tried to help him. Mine has been a life of trying to help my son, to alleviate his stress, his anguish. Trying, now that he’s grown capable of all sorts of things, to keep him safe.
I cannot describe the feeling of having a child you’re not sure you can keep safe.
So work, and the perks of having expendable income, have once again almost entirely disappeared from my life. Thank goodness for Lars and his relatively stable job. Thank goodness Saskia babysits, pays for lots of her own stuff (and does not mind it). Thank goodness I have Lars and Saskia to help me through this complicated life. And most of all, thank goodness that we have Benjy still, and that there are still times when he can smile.
And yes, we are Officially Broke for the foreseeable future.


  1. I very much know how this is. We are a one income household because there is just no way I can work. I have to drive my daughter to several therapies/week, meet with the school (what seems like all the time) and, yes, be there when the bottom falls out. It is not something any daycare could handle, not that I would want anyone but me to be there. It is definitely a sacrifice, but we are lucky to afford me staying home. We might not go on vacations, or eat out. I don't look like the fancy soccer mom. But, this is the way it has to be.

  2. Jen, thank you for your comment. I hear you, especially when you say you wouldn't want anyone but you to be in the trenches. Same here. Whatever the struggle, whatever loss it engenders, it has to be me. And when things go right, what a reward! :)

  3. We, too, can not afford anything but the basics. As a single-mom family with 4 kids (2 with pretty complicated disabilities), that in itself can so so damn isolating. My friends whose (NT) kids ice skate, take many music lessons, and go on vacations on planes and stay in semi-nice hotels, are nice, but don't get our life. Pre-diagnosis and then pre-divorce, we were lower middle class masquerading as middle or upper-middle class folks. Now, as I pray my minivan with 114,000 miles on it doesn't conk out, we too live paycheck to paycheck. This is the only way it CAN be, and someday I will do a better job coming to peace with it. Keep writing, Anna... the love you have for your family inspires me. Laurel from

  4. Boy, Laurel. I get it. And I think, as you say, it's all about making one's peace with it, and finding the beauty in this kind of life. :)

  5. Anna,

    We are also a single income family due to my children's diagnoses and spend more each month on therapies, evaluations, counselors and medications then we do on anything else - including our house. It's been years since we went on a vacation, unless you count flying to Baltimore for brain surgery. (Sadly enough, my kids did.) We too visit Saver's and our oldest (NT) child worked two jobs so that she could go to college and buy the little extras that her friends' parents picked up without a second thought. This summer it looked like we were going to have to choose between tuition money for our oldest to start college in September or a surgery that my other child needed to live a somewhat normal life. With heavy hearts and a lot of guilt we chose the surgery. Thankfully, an unexpected (though small) windfall came in late August in just enough time to pay our share of the tuition bill, but the stress takes it's own toll. And though I'm very grateful that we can scrape by on one income...I miss my work and having something of my own. I never thought my kid would need a stay-at-home mom at the age of 16, but here we are. I admire your strength and devotion to your child, and your post reminds me that we are not alone. Thank you.

  6. Kate, thank you so much for your comment. The sacrifices you have made for your children -- and the pain I know you feel when you cannot give them everything they want or even need -- are profound. For me, the best thing in the world is connecting with other parents who have struggled in similar ways, and whose courage inspires me. Indeed, we are not alone. Thank you for dropping by, and I wish you all the best.

  7. I'm a single mom AND I can't work outside the home. I wish I could, but it's not possible at this point. Not only is my son on the autism spectrum, but he also has an Immune Deficiency. That means, he gets sick all the time and misses a LOT of school.
    I don't like being poor, in fact, I hate it. We all have to do what we can in our own special circumstances.

  8. solsticemom:

    Thank you so much for dropping by. I cannot imagine how you do it, but I know you do, and that you are there for your child. That is the noblest thing of all. No one chooses poverty, but as you say, you do what you have to do. So often I am amazed when I meet or hear about parents who simply deal with the cards they (and their children) have been dealt, and deal with them with grace. I hate not having enough money, too. If my daughter wants to buy lunch instead of bringing a PB&J, she has to do so with her own money. That breaks my heart, but it is our reality. Sounds like it's yours, too. Keep on truckin'. Sending warmest thoughts your way -- Anna.