October 15, 2009

One of the things you become very familiar with when your child has severe, multiple disabilities are specialists.  Specialists are those doctors that you are sent to when the questions surrounding your child's needs surpass the knowledge of their primary doctor.  Doctors have various types of personalities, just as you would find in the general population. But, in my experience, specialists, especially those that deal specifically with individuals with developmental disabilities, acquire a special level of "quirkiness" somewhere during those extra years of training.  Sometimes you are thankful for that quirkiness.  You aren't going to these doctors expecting good news.  So, an unusual sense of humor in a doctor may actually smooth you over some of the bumps.  An extra level of intensity may give you an extra amount of confidence in their abilities.  Long explanations of options, historical background, and an overview of any research being done anywhere by anyone may result in information overload, but at least you know he's on top of his game.  And, then there is the quirkiness that results in your staring at them, jaw hanging open, without a clue as to how to respond.  Such was the case yesterday when I took Lauren to the orthopedist.

Lauren wears AFOs - orthotics that support her ankles. They are made of a white plastic substance, lined with a foam-like material and range from her knees to the tips of her toes. Straps hold them on. They are hard, clunky, and hot. She's been wearing them since she was very small. Without them, the one ankle is not too bad, but the left really turns over until she is almost standing on the ankle bone. Lauren wears them when she is in her stander (two hours a day). She used to wear them all day when she was in school, but now that she's an adult, we give her a break from them when she's out traveling around in her wheelchair or relaxing at home. But during transfers (Lauren can stand but not balance), she could really use some support on that ankle. So...I made an appointment with her orthopedist. He's been treating her since her first pair of AFOs and is well known, well respected, and basically a nice guy. But why, when they are putting in all of those extra years of training to become the wonderful doctors that they are, do they not also train them (or train them better) in how to talk to patients and their families? I won't even go into the fact that he never actually said a word directly to Lauren, but in response to my question about a smaller, more comfortable orthotic I got the following response:

"Say you went to India" (yes, he said India – we can’t even go as far as the Jersey shore with Lauren and he’s talking about India). "Now, someone asks you to lie on a bed of nails – you’d do it, right?"(Ahhh, no.)  "You could do that. But what if someone asked you to lie on a bed of "nail"? You wouldn’t do that right?" (Good guess!)  "That nail would go right through your skin!" (Uhmmm, I know there’s probably some physics involved here but I’m just not all that sure that multiple nails wouldn’t go right through my skin either.)

So I asked, "And, your point is...?"

"Well, that’s why she needs the longer orthotic!" Right, I get it.....no, I don’t get it at all.  India, bed of nails, orthotics...am I missing something?

His point was that the longer orthotic (bed of nails) would provide more support and the shorter orthotic (bed of "nail") would not be as effective. I eventually figured that out. (Aren't you impressed!) Couldn’t he just have said that? We went halfway around the world and all I got out of it was virtual jet lag.

I wish he had spent some time listening to me talk. Listening to me explain how Lauren’s life had changed and why we were asking this question.  I wish he hadn’t spent the rest of his time with us discussing the affordability of Polish or Argentinian custom-made shoes over American (Lauren doesn’t even wear custom-made shoes). I hope that he didn’t go globe trotting with the other family who was there that day, who will have traveled for five hours just to see him.  I hope that they left with the information and direction they needed to care for their daughter, and a feeling that “this guy” was on top of his game.


  1. Glad to see your blog. Doctors can be quirky - we waited almost 2 hrs to see my daughter's psychiatrist and he laughingly told me that they were busy discussing politics - I wasn't exactly laughing by then.

    My daughter Lesley just turned 25.


  2. Thank you so much for this blog on Lauren. It is amazing how many of your thoughts have gone through my mind. Most of our son's doctors are at Childrens Hospital Boston, because we were told "the writing is on the wall" that was in 2005 in NY.