Hope’s annual early intervention (EI) evaluation for eligibility was rocky, to say the least. What made it hard on Hope was the evaluator’s loud and abrasive approach. What made it hard on me was the evaluator’s overreaching, and often inaccurate, comments about Hope’s skills and preferences made without reading her cues that she was scared and didn’t want to “play” with a stranger. (In NJ, the evaluator is an objective observer who has likely never met the child s/he is evaluating.)
Of the many comments made throughout the session, two really stood out. One comment I play over and over again in my head, trying to understand why the assumption that was made, was made, and what I could be missing. The second comment I brushed off at the time, but it recently came into focus and has given us a lot to think about.
The first standout comment was the evaluator’s assertion that Hope doesn’t like puzzles. This part of the evaluation involved about a 5” x 3” blue plastic rectangle with two yellow shapes inside. Neither of the shapes had pegs or knobs, and Hope has never seen a puzzle piece without something to grab onto. To her, this was not a puzzle.
Within the test’s allotted time, Hope’s disinterest in the shapes led the evaluator to pull the little board away and proclaim, “I guess you don’t like puzzles!” Truthfully, I’m not sure whether or not Hope likes puzzles, but I do know that strange rectangle wasn’t nearly as enticing as our fat-knobbed puzzle of a dog, cat, and bird.
I’ve been trying to find out what on earth this “puzzle” was, and the closest I can find is what is referred to as a chunky puzzle. Chunky puzzles have puzzle pieces that have no pegs or knobs, but they have plenty of notches for gripping and are thick enough to be handled by a child’s clumsy fingers. But the EI puzzle was much thinner, making the pieces harder to pull out of their slots. (I had to use my fingernails to get the pieces out.) And interestingly, I can’t find a knobless puzzle that is rated for a child under 18 months old (most are rated for age 2+ years). Hope was 16 months old at the time of her evaluation…
The second standout comment, and the one that recently came into focus, was made as we discussed Hope’s independent play skills. The conversation went something like this:
Evaluator: Can Hope entertain herself for 5 minutes?
Me: Yes, I’d say she can.
Evaluator: Okay. And can she entertain herself for 10 minutes?
Me: I actually don’t know!
Evaluator: That’s okay. A lot of parents find themselves in that position.
Full stop. Seriously? Have I found myself in a position? I was so surprised, that I didn’t say anything more. I enjoy playing with my daughter! And if I need to get something done while she’s awake, she participates in some way, or I at least talk to her and explain what I’m doing while I’m doing it. Yes, that can make the task take longer than it would if I were alone, but I know in my heart that this is an excellent way for us to talk and to introduce her to social and life skills. I don’t need Hope to spend 10 minutes on her own—we share our day, and I cherish that.
But earlier this summer, Hope was playing with her fat-knobbed puzzle (of all things!) and became fixated on trying to fit the bird piece into its slot. When she was all done there, she moved on to her shape sorter and began a game of putting blocks into the box in different combinations. Every now and then she would check in with me and I’d tell her she was doing a good job, then she’d get back to work.
This went on for about a half hour, and of course I thought back to the evaluation, wishing I could call someone from the state and exclaim, “Yes! Hope can entertain herself for more than 10 minutes!” I wondered why I was so sensitive to the question to begin with, and I realized it was the wording. “Can Hope entertain herself for 10 minutes?” is very different from “Is Hope willing to entertain herself for 10 minutes?”
That is our ultimate struggle with Hope and something I foresee us having to regularly revisit for the foreseeable future: her abilities vs. her willingness to perform. For example, “Can Hope crawl?” is not the same as “Is Hope willing to crawl?”, nor is “Can Hope drink through a straw?” the same as “Is Hope willing to drink through a straw?”
The need for blind EI evaluations makes sense for many reasons, and in the end, a bad score simply offers us undisputed access to therapeutic services. But why a DS diagnosis doesn’t automatically open doors to every therapy for children ages 0-3 years is a mystery, or at least a thinly veiled prioritization of state funding that does not value this vulnerable population of precious boys and girls.
It is becoming clear to us that we are living in a very safe and protected bubble, where the differences between Hope and her peers range from slight to nonexistent. Perhaps through this latest evaluation we have seen a glimpse into the nightmare of standardized testing we hear so often dreaded by parents of older children. Hope is now more than halfway through EI, which ends abruptly on her third birthday, and I’m terrified of what it’s going to feel like when preparation time is over and we get pushed into the real world.
Looking back at the evaluations performed on my children, many were incorrect. One teacher, who thought she was an evaluator, accused my son of deliberately mispronouncing words like “caaat and baaat.” He spoke like his mother who was from the MidWest. She analyzed him as a defiant boy. Another said there was nothing wrong with my Asperger’s Disorder son but that I was the problem. I was overreacting as a mother. It’s hard enough being a parent. We need encouragement and “Hope.” No worries about the puzzle pieces. Hope probably thinks puzzles are interesting and exciting to include animals which make up a story. Always go with your gut as a mom.
Wow, that’s all so frustrating (and I didn’t know about the Asperger’s diagnosis!). When evaluation time rolls around it’s always very tense, and reading the report is always sad. Then we just take a step back and remember how incredible Hope is and that we know her best. 💕
Pingback: Sending a BIG Thank You on World Down Syndrome Day | At Her Own Pace·