Sunday, May 22, 2011

Delays, and Belated Clarity

My daughter’s formal IEP arrived Thursday night.  No surprises – everything had already been covered at the meeting but there it was in black and white:  Poor, Below Average, Moderately Low, Low, Significantly Delayed, Very Poor…. This is my exceedingly delightful gorgeous daughter they’re talking about.  No, No, No, NO.

They provided an exhaustive catalogue of what she was doing (she can jump 4” – who knew?) but it was not enough.  The worst section was the occupational therapist’s who, in addition to using their standard numeric scale, was super-duper-thorough and noted the expected developmental ages for various things my daughter was not yet doing (she’s turning 3 in nine weeks):  expected at 12 months, expected at 14 months, expected at 13-20 months.  That was exceeding helpful information.  A litany of failed benchmarks.

But then something caught my eye:  The area of daily living skills was one of [her] higher domains…. “Daily living skills” - This is language from my world.  When you break your non-dominant arm in an accident, it’s worth more or less x.  If you break your dominant arm, it’s worth a tad bit more, say 1.2x.  If you break both arms you can no longer brush your teeth, scratch your nose, or use the restroom solo.  The sum of your claim has now shot past 2x simply because you cannot perform your ADLs, Activities of Daily Living.  This creates near total dependence and allows for an endless stream of minor humiliations, depending on who is, um, brushing your teeth.  Every physical & occupational therapy form, ever, should document which ADLs are affected by whatever your complaint is.  Therapy will (hopefully) either restore your skills or find work arounds.

Something finally clicked – “This” (sweeping hand gesture)… All of This is simply supportive care.  The 12 page summation of Ways In Which [my daughter] is Behind is simply the grand-daddy of Therapy Evaluations and they’re just working on her ADLs.  Because standing on her tiptoes and, well, talking are important life skills.

In writing this, it strikes me that this should have been self-evident.  This is clearly less Grand Epiphany and more insight into the tortuous workings of my brain.  I think I even explained the process to someone else mid-testing, but also had managed to work myself into a frenzied lather about the whole thing.  How did I think they were going to develop an Individual Ed. Plan without some baseline?  The whole point of an IEP at this stage of the game is to set her up for therapy.  Fabulous…  Round one?  Sanity : 0  Hysterical Mom: 0 No winners here.


  1. Oh so with you in this process. It hurts to see bald numbers that compare but I've learned to step away from my fears of comparison and just think about it as what it is- a description of areas she needs some learning to do and help with to do so and what she is really good at. Usually a good IEP has strengths too. Not hysterical - just a mom :)

  2. Hmmm. We're about a month behind you--haven't yet gotten our IEPs, but we're set up for our assessment meeting soon.

    I hear you about the comparisons, but somehow I've managed to frame all assessments up until now in a useful way: we actually don't want Maybelle to be non-delayed, because that means care will be denied, and we want her to have lots of care. So when her therapists identify delays, I see this as a good thing.

    But I also think I benefit from Maybelle being the first/only child: I have no idea what typical development is, so it's easier for me not to make comparisons.

  3. Ugh!! If I were a swearing person, I would be inserting all my four-lettered words to tell you how I feel about those tests and the numbers associated with them.

    P.S. Jumping 4' is awesome! If you are jumping over a creek, 4' is more than plenty. Seeing how I don't think I (as a "typically functioning adult") will be jumping over anything bigger than that, why isn't 4' enough?? Those tests just have the wrong perspective. And your daughter IS delightful and gorgeous, no matter what those tests say.

  4. Well, it was four inches, not four feet, but that's still good for jumping over dogs' tails and errant happymeal toys. She'd need to get four feet before jumping over the laundry pile.

  5. LOL! so that's what I get for posting comments late at night!