Happy Fall Equinox, and I am so glad to be back. For two weeks, my day job has included a huge workload that left no time for anything else. Now I’m catching up on some important things, including this blog.
During the past two weeks, I went to my local Barnes & Noble. I do that most weekends, to browse if not buy. This time, I was drawn to a book called When God Doesn’t Fix It by Laura Story. If you don’t know who that is, she’s a musician and singer whose hit song “Blessings” was at the top of the Christian Billboard Charts for four weeks in 2013. In fact, it was #1. Laura also knows firsthand how it feels when you have problems you feel like God should fix or cure or change, but He doesn’t do it the way you’d like.
I could go on and on about the things I learned from this book and I probably will talk about it throughout the blog later. But for now I want to focus on a new thing that I learned about disability, and the questions this new knowledge brought to mind.
If you don’t already know Laura’s full backstory, she is married to a wonderful man named Martin Elvington. In 2005, Martin started experiencing disturbing symptoms such as incapacitating fatigue and headaches. Doctors discovered he had a benign brain tumor. The anticipated outcome was that the tumor would be removed without complications, Martin would recover, and he and Laura would get back to normal life. As you might guess, that’s not what happened.
Martin suffered complications from the original surgery and an additional one to patch a hole in his nose that was allowing spinal and brain fluids to leak out. Long story short, the guy was in a medically-induced coma and nearly died. When he came to, he had to learn to do basic things again. Martin succeeded in relearning to walk, eat, and many other things that rehab facilities work to reteach brain surgery patients. But he continually scored poorly on short-term memory evaluations.
To this day, Martin Elvington has a significant disability related to short-term memory loss. The modifications he uses to get through daily life include working for six months to memorize the names of all the boys he coaches on a local Little League team. He and Laura practiced bottle-feeding and diaper changing over and over and over again so that Martin would be prepared when their daughter Josie was born. Martin cannot work at traditional jobs because they often rely so much on memory and following long sets of directions, and for months, Laura never left him alone.
This does not describe the place Martin and Laura are in now. Martin still has his disability, because as we know, often those don’t get fixed even by God Himself. But he is much more independent. The key is, Laura had to learn to let him be so, and she had to make him be so at times.
During the early days after her husband’s surgery, Laura often treated Martin like a little kid. She would lay out his clothes for him, tell him to take his phone and keys everywhere, explain things in small steps, and so forth. That might seem natural and safe to do. If you are a parent or a loved one whose child or niece or nephew or whoever has a disability, I’m sure you can relate on some level. I know my parents could, especially when I was little. When you have a loved one with a disability, it’s often easier to do things for them. You can do it faster, more efficiently, and better than they can, right?
Maybe…but that’s not the path you should stay on.
I will admit freely, there are times when I wish people would do more things for me. When I was little I rebelled against occupational therapy in particular. I felt like, by asking me to dress myself, hold a pencil, whatever, those therapists were treating me like a baby. I also felt that parents were there to do stuff for their kids, right, so what was the problem?
Of course, kids can’t see down the road very far. When you’re six or eight or even ten, you don’t know that the consequences of having someone do everything for you will eventually hamper your adulthood experiences and sense of self-worth. Adults like Martin Elvington can understand this better, but spending time on basic tasks is often so draining, and so humbling–let’s just say it, humiliating–that they’d rather not even deal.
I get that. I totally do. I also understand, if from an outside perspective, that independence can hurt. I commiserated with Laura when I read that it hurt her to allow Martin to miss Bible study and other commitments because he didn’t remember to set his alarm even after they’d been over the drill and practiced. And I commiserated with Martin, because he didn’t ask for a memory-related disability. Why should he have to face consequences and fail because of something he could not control? But I also knew, from experience and from rooting for this couple, that it was better for Martin to be independent.
Maybe you have a Martin or Martina in your life. It could be your six-year-old with autism who has the capacity to learn to read but balks at the idea. It could be your eleven-year-old with Down Syndrome who rebels against speech therapy or learning to use a fork and knife as well as her peers do. Maybe it’s your teenager with cerebral palsy who needs to exercise independently but won’t. Maybe it’s an adult who could work, but is afraid to, so he stays home.
So the question is, when do you push? How do you push? When do you let independence hurt, and when do you back off? I’m not an expert because I am the person with a disability in this scenario. Yet I can give tips based on my experience and what I have learned from others. Here they are:
Before you push, observe the situation. Maybe that six-year-old with autism hates reading because he can’t see well, in which case he may need glasses or large print. Maybe it’s because he fears being made fun of. In that case, he could begin by reading aloud privately in his room, or reading to a pet or toys. Maybe your child with Down Syndrome would do better with an assistive speech device than speech therapy, or maybe the therapist is the one pushing too hard. Observe, and think about how the PWD must feel in that situation, before stepping in to push.
Pushing does not = punishment. Never say to a PWD, “Fine, if you don’t want to do this, you can be helpless your whole life” or, “Fine, you better start saving money for a wheelchair if you don’t want to walk.” Pushing in anger makes people feel trapped, and they will either retreat from you or bite you. Keep it firm, but keep it gentle.
Example: Let’s say that, like Martin Elvington, Abby has short-term memory issues. Abby wants to go to a school club with her friends, but it meets before school and she’s never had to set her own alarm before. If she misses her alarm, Mom and Dad should not shame her. Instead they should say, “That’s okay; you’ll get it next time,” or, “This doesn’t feel good, does it? Let’s start working toward next week now so you can be on time.”
Look down the road. In other words ask yourself, is my child or teen’s inability to do X task now going to influence his or her life later?
Examples of “yes”: Dressing and grooming oneself, feeding oneself, taking care of one’s own belongings as much as possible, following schedules, exercising and healthy eating, basic reading and math skills (or whatever educational skills your child can meet. If, for example, your child is gifted but struggles in math, do not automatically exempt her from mathematics. Instead, push her to continue seeking help and getting better).
Examples of “no”: Perfect speech, tying shoes, unloading the dishwasher within 20 minutes of it running, exercising in a specific way, making consistent eye contact when the disability somewhat precludes that skill, giving up “childish” things if they are of special interest or are on the person’s intellectual level.
In other words, will this situation negatively impact your loved one’s health and well-being, ability to function on basic levels, and ability to reach his or her full potential? If yes, then push. If not–if the issue can be addressed through assistive technology, if modifications would take pressure off the person, or if expectations don’t line up with those of TAB peers–don’t push. (For example, we don’t blink if a TAB person wears loafers, so what’s the big deal about shoe-tying)?
Yes, independence can hurt sometimes. Yes, your loved one, especially a child, may jab you with accusations like, “If you loved me you wouldn’t make me do this.” It’s tempting to get angry at that, but please don’t. Instead, say, “This is *because* I love you, and I’ll love you no matter how you do this, or when you do it, or if you learn to do it perfectly. What’s important is that you be the best you can, not in spite of disability, but with it.” Because you see folks, a lack of independence and responsibility can teach people to be ashamed of their disabilities. Let’s break that cycle. There will be pain. There will be sweat and tears and maybe some blood.
There will also be great rewards.
To learn more about Laura Story and her story, go here: http://laurastorymusic.com/new-book/.