Thursday, February 7, 2013

On Therapy

Update:  Gigi is still in ICU but is doing much better and has started Physical Therapy.  I flew home Sunday.  But my dad and uncle have been with her, my sister is taking this weekend, and I’ll go back out next weekend.

Gigi’s PT is timely in that there’s been quite a bit of discussion on line lately about therapy and ableism. There was a discussion on FB a couple months ago that I chimed in on, followed by this blog hop.  In short, if you haven’t been following along, some parents argue all the various therapies we inflict upon our child are a convoluted, albeit well-intentioned form of ableism.  That, in our efforts to “normalize” our kids, we are just as unaccepting of their differences as the twit in the Houston restaurant.

I get it, I do.  Therapy is a massive black hole of time and money and there is rarely any immediate payoff.  There are strange people in your home who know you only run the dishwasher when you run out of coffee mugs (and we own dozens of coffee mugs).  There may not be any pay off – your kid may never end up walking, talking, or reading.  You may have just spent $10k a year on the biggest healthcare scam since they touted apricot seeds for cancer.  It’s also quite likely that your kid would have ended up mastering most of these same skills eventually in their own time, therapy or no.

So why bother?  Why not just take your kid home and love them, let them run around with their siblings and the pets and pick things up on their own?  If they don’t - if walking, talking, and reading doesn’t come naturally – if you really, really loved them it won’t matter to you.

I work full time.  More than full time, mostly.  I am the antithesis of the helicopter-/Tiger mom.  My kids get almost no after school activities and I expect them to play independently when we’re home.  That said, I am their mother and it’s my job to ensure they learn to navigate the world they live in.

Do I “teach” them to navigate their world or do they learn?  I didn’t have to “teach” my son to walk or turn doorknobs.  He figured it out on his own, thru exploration and observation – and for years after would climb into our bed in the middle of the night.  Hoping to avoid a repeat of all that headkicking snuggling, I purposely hadn’t worked on this with my daughter.  You know what?  She figured out those doorknobs all by herself.  She figured it out a couple years later than her brother, but she got there in her own time.

Did all that OT help her? Help strengthen her fingers and fine motor skills?  Did it speed up the great Doorknob Benchmark by 6 months?  A year?  Or, had we gone au natural and therapy free, would she still be stuck kicking her door in the morning, demanding freedom and breakfast?  Who the hell knows? Who cares?

Well, I do actually.  First, she was frustrated because she was awake, wanted the day to start, and there was a door literally closed to her.  Second, she really was kicking the door and I didn’t want to have to buy a new one.  I can make a good case this frustration led to her increased focused on doorknobs and this coalesced with her developing manual dexterity, finally allowing her open doors, but there is not a doubt in my mind that the hours of pushing, pulling, & pointing in OT got her finger strength and fine motor skills to the point where she could grip and turn the knob.

Do I think of this as normalizing behavior?  Would I value her less if she still couldn’t open the door and had to keep kicking? (Depends – what do new doors run?)  Do I find her less disabled because she can open a door 6 months earlier than she could have sans therapy.  Bullshit.

In my old age I have taken up running.  When my brother signed me up for my first half marathon I hadn’t run more than 3 miles in probably 15 years.  The most I’d ever run was 6, and that was while I was in the LAPD and there were guns involved.  I wasn’t going to end up running 13 miles sitting on my ass in my living room – I had to practice.  I started with 1 mile on day one, went 1.5 the next week, and 2 miles the week after…. My muscles slowly got stronger and my lungs more efficient (sadly, said ass has not shrunk).

Gigi is 94 years old and has had a rough week lying on a hospital bed.  She needs support as she starts to stand and move around again.  As devoted as her sons are, her physical therapist has more experience teaching older patients how to safely navigate corners, stairs, and use a walker.  Would Gigi regain strength on her own?  Probably – she is one tough lady – but she loathes hospitals and wants to go home.  She wants her independence back.  PT will get her there faster and safer.

Everything I’ve read about Down syndrome suggests most kids will master the basics but it will take them longer and require more repetition.  They will need to practice-practice-practice.  Reading will come, but thru sight words - seen, shown, reinforced and repeated a gazillion times – not thru phonetics.  Do I not bother to teach my girl to read because the process won’t be as natural as teaching my son what sounds the letters make and letting him loose in the library?

I don’t think of therapy of anything more than practice time.  I can’t imagine how it equates to breaking a child’s legs to make them an inch or two taller in adulthood.  As a working mom, I find a concentrated hour of practice time to be critical – if I were home all day with my child I could sting beads and build blocks with her to the same benefit but that’s not my world, so we have to practice when we can.  One mile at a time.  And that moment is not at home, exhausted after 10 hours at work & day care, while the spaghetti cooks and I’m rooting around for a coffee cup to put my wine in.

I am not teaching my child to be normal.  I’m trying to teach her – yes, in hour long increments if I must – how to be independent.  I wanted her to walk as soon as she could, not because I gave a flying fuck about the milestone, but because as soon as she started walking, she could find her own toys, come give me hug, and empty out the cabinets.  That is “normal”, but it also opens up a whole new world for her to explore.  Her little neurons started firing faster when she was able to rummage thru her toys and select the best one, when she learned to seek me out for a hug instead of just yelling, and when she learned that banging lids and pans together for 20 minutes would convince mommy to turn on Signing Time.  

Of course I’d like her to be “high functioning.”  It will, to be perfectly blunt, make her life easier - but her father and I won't value her life any less if she weren’t.  A girl capable of manipulating her own zippers & buttons with all those frequently practiced fine motor skills will require less help and put her at less risk in bathrooms away from home.  A girl capable of clearly communicating with doctors, police, teachers, and Starbucks baristas will find the world a safer and more welcoming place – that's a sad reality but it's true.  There’s no guarantee of happiness, but there are a lot fewer things that can go wrong.  I won’t love my daughter any differently if she never masters buttons or starts talking – if she ends labeled “low functioning” – but I’m not going to not try to teach her those skills, even if we have to do it repetitively, one hour a time at $95/hr.

Full disclosure – we’re actually only doing private speech therapy right now.  I wish we had the money and time to do more.  Not all of our therapists were effective.  We changed.  My advice for newer parents is this:  If you are so overwhelmed with your therapy schedule, cut back.  Take your kid to a park or let them rummage thru your cookery instead.  I once read a parent who wrote they wanted to be their child’s parent, not their therapist.  You don’t have to be their chauffeur either.  If you are starting to feel like your kid is a project, change something.  Therapy is a tool, like any other, and if you don’t like running on a treadmill, try the sidewalk.


  1. I think that you brought-up a good point here about your work-schedule. I believe that what's right for one child, isn't necessarily right for another. And what's right for one family, isn't necessarily right for another. I have been a stay-at-home mom for Royce since he was born, and because of that I have an entire day of mothering, along with an entire day of natural therapy. I say natural therapy because we were busy, busy, busy working on whatever for Royce, and it was all incorporated in every part of our day. I have a good friend who works, and therapy is super important to her.

  2. I am glad to have found your blog! I like your common sense approach and reminder that one size does not fit all.

  3. I agree. I am pro-therapy as well. I am not trying to make Ella "normal" but I am trying to give her opportunities that she might otherwise not have. On the flip side of the argument why would I expect my son to do his best and not my daughter?

  4. Okay, everybody else is commenting over at Facebook, so I'll be rebellious and do it here. What thoughtful stuff, as always, from you!

    I have mixed feelings about therapy for exactly the reasons you note at the end of your post: I don't want Maybelle to be a project. But currently the therapy she's doing feels like it's coaching me as much as Maybelle--here are some ways to play with her! Her are some effective strategies for helping her learn to read! If she plays THIS fun game, it'll actually help her to learn to use her hands more effectively.

    Like you, I'm a HUGE fan of independence, and I recognize that it requires practice. But I also recognize the critiques, too, and I don't dismiss them.

  5. Great post! I think that everyone has to do what is best for their family (and doors) which basically means that I am not pro or anti-therapy. I think that the point to take way is WHY are we doing or not doing therapy. Ellie is in therapy, but not the usual cocktail of OT, PT, ST. She is in ABA and ST. I have no idea how to help Ellie talk. She has this brain-oral muscle disconnect and I don't know what to do and she FRUSTRATED. We need the help and guidance of a trained professional. The ABA could be a whole series of posts! Bear knocks on her door rather than kicking. I kind of like that she cannot escape yet :) Glad to hear the Gigi is doing a bit better.

  6. I've just been "lurking" over this conversation, largely because my son (at age 11) is basically a senior citizen when it comes to this discussion and any distinct memories I have of early intervention have the patina of time and I tend to romanticize the past anyway ... however, in thinking about this discussion on Lisa's blog and here, you have really crystallized what was our experience when you said:

    "I am not teaching my child to be normal. I’m trying to teach her – yes, in hour long increments if I must – how to be independent. I wanted her to walk as soon as she could, not because I gave a flying fuck about the milestone, but because as soon as she started walking, she could find her own toys, come give me hug, and empty out the cabinets. That is “normal”, but it also opens up a whole new world for her to explore. Her little neurons started firing faster when she was able to rummage thru her toys and select the best one, when she learned to seek me out for a hug instead of just yelling, and when she learned that banging lids and pans together for 20 minutes would convince mommy to turn on Signing Time."

    Yes! That's what EI meant to us. It didn't mean 'normalizing' Cooper - which was not a concern of mine anyway because I have used a wheelchair since age 8 and normal was redefined for me long, long ago by my own experiences -- but because EI helped Cooper develop in a way that moved him towards greater and greater independence. That could mean that it helped him out of the exer-saucer and onto the play mat, where he could rummage as he wished, and it also could mean that he could keep up with the kids in his three-year-old kindergarten class, especially since classroom to playground involved a set of stairs. And by keep up, I don't mean keep up by some essentially arbitrary standard, I mean literally, he could get to the playground at around the same speed as everyone else, on his own steam and not on the teacher's hip. That was hugely motivating to him, as were consequential experiences.

    When Cooper transitioned from EI, he moved to a typical preschool and I feel like the modeling that happens for him around typical kids really picks up where EI left off -- and still does today in fifth grade.

    Of course, each child is different and will achieve differently. I remember Robert Kennedy saying once that it had been over 7 years since he had seen any of his childrens' report cards. He simply asked if they had done their best. I love the sentiment behind that (probably unrealistic for most of us) gesture -- he redefined success for his kids by basing it on their assessment of their performance -- not on someone else's. I have found that once you let go of traditional measures -- because it's true, we humans are a measuring bunch -- you can begin to measure success in ways that are much more satisfying and gratifying. I would guess that each of us recognizes when our children are feeling hugely successful and confident, and I would suggest that's the best barometer.

  7. Bravo! What a great post and I so agree with you. On all parts.
    We have to find that balance of pushing our kids to achieve but also allowing them to have fun and learn as their neurotypical peers do.
    And very true, as one reader said, being in mainstream and around lots of other NTs does amazing things for development. My daughter has thrived since being as school, in mainstream since kinder.

    I like your blog! I too am a late starter runner. :-)