Wednesday, February 20, 2013

A Tale of Two Evaluations

As we trudge through the process of figuring out the best kindergarten fit for Maya, we are once again back in the world of evaluations and reports.  This is not a fun place to be, as any parent of a child with special needs can attest to.

First, I will concede that these reports are necessary.  It’s important to identify areas of strength and weakness, to determine whether a child qualifies for services, and which skills should be targeted in the future.  That all makes sense.  But then things start to break down.

Evaluations are often conducted by people who have never met Maya prior to said evaluation.  These well-meaning people tend to greet her enthusiastically, which makes her clam up and withdraw a bit, smiling shyly.  In turn, the evaluator lays it on a bit more thickly, lots of cheerfulness and toys laid out and “show me your talker!” and “maya-do-you-want-to-play-with-blocks-or-maybe-a-doll-or-maybe-this-school-bus-or-maybe-do-you-like-crayons-better-do-you-know-your-colors-maya-do-you-like-pink-do-you-want-this-pink-crayon-maya-maybe-can-you-say-crayon-with-your-talker-no?-yes?-well-maybe-you-can-say-pink-or-if-you-don’t-have-pink-you-could-say-red-I-guess-maya-do-you-know-how-to-turn-your-talker-on-is-it-with-this-button-here-hmm”.  And Maya just smiles.  Or maybe tries to hide her face with her coat. And maybe sits on the floor.  And maybe knocks over a toy or giggles and tries to swipe a crayon. 

If the adult is putting on a show, Maya is generally content to watch. 

I know this, but can’t get over the awkwardness of saying what I really think needs to be said . . . “Hi, I’m Dana.  If you want her to pay any attention to you, your best bet is to start talking to me and ignore her for a few minutes.”  (because then she’ll act like a typical preschooler . . . hey, what about me? Don’t you want to see my talker? Hey---is that a school bus?!?!  I want it!)

Typically, I sit back. It’s the scientist in me.  I don’t know what protocol evaluators are following and I don’t want to skew results.  I imagine that they, as professionals, have a big bag of figurative (and literal) tricks, and that they will present them in some sort of interventional and motivational hierarchy.  I imagine that they are masters of body language and social intelligence, and will push in and pull back until they have figured out how to dance with Maya through the evaluation.  I imagine that they are skilled experts. 

As it turns out, sometimes they are.  Sometimes they are decidedly not.

In the category of decidedly are not, let’s revisit Maya’s psychological evaluation from 2010.  This evaluation, required for determining whether she qualified for a therapeutic preschool, was also our first attempt at cognitive testing.  This evaluation, and the report that came as a result of it, had been so abysmal that I wrote a longer piece about it---here’s an excerpt, so that you can get a look inside the appointment:

I think back to the afternoon of Maya’s psych evaluation.  Oh wait, I mean the evening of the eval, as the psychologist arrived 45 minutes late, only getting down to business at 6:15, thirty short minutes before the girl’s bedtime.   I eyed her suspiciously, as she looked to be about sixteen and appeared to have never interacted with a young child.  She handed me a survey to complete and I sat off to the side, dutifully penciling in bubbles, as Maya laid face down on the floor and eyed the psychologist suspiciously through one eye. 

Maya!  Do you want to play with the DOLL?  Which toy is the DOLL, Maya?

(Maya made no motion.  I think she even willed herself not to blink.)

Here-can you see them, Maya?  She carefully moved her line up of toys closer, now an inch from her nose.  Which one is the DOLL?  Do you want to play with the pretty DOLL, Maya?!

Maya turned her head away, saw me sitting across the room and smiled at me.  I stifled a laugh.  I wouldn’t want to play with that crazy lady either, silly girl. 

And so it went for the next forty-five minutes.  Toys were presented and ignored.  Requests were made and ignored.  At some point it struck me that this woman might end up writing that Maya was catatonic unless I intervened, so I made her sit up and engaged her in some play with a few blocks.  See, she listens, I thought, you are just very boring and now it’s bedtime.  When she left I joked to Dave “Well, it shouldn’t be a problem getting into a specialized preschool.  That lady most likely thinks that Maya is a vegetable.”

But now, on paper, it didn’t seem funny anymore.  The typed words looked official, the opinion of a professional, and this professional said that Maya’s cognitive functioning was abysmal.  I skimmed her observations and then this gem jumped out at me: Alexandra was not able to stack blocks. 

Who the hell is Alexandra? 

You mean to tell me that the late, unengaging psychologist was also not yet proficient at copying & pasting?  Really, lady?  Your report is bringing me the news that my child is severely impaired, and you can’t even do a quick proofread?  I imagined her quickly printing off the report and running out to the bar with her young, unburdened friends.  I hated her.

Further on, she wrote that Maya’s “expressive language skills were slightly stronger than her receptive language”.  Translated, this meant that she could speak more words than she understood.   Since she could only say one word (bye!), this meant that the psychologist assessed her to understand zero words.  Zero.  How would she explain what I saw as I peeked into the living room, where her OT was saying “Maya, pick up the yellow duck and put it in the box”   . . . and Maya did, of course. 

That psychologist didn’t know Maya.  Not at all.

That psychologist was not a skilled professional (professional, yes, skilled . . . eh).  She did not have a big bag of tricks, figuratively or literally or even imaginarily.  And lest you think that I am unfairly bashing the therapist, let me say this: I know Maya can be a challenge, a little puzzle.  But she was 2.5, and toddlers are tricky---she should have been prepared to coax her out of her shell.  And if she couldn’t---no worries! I was sitting right there, and would have happily, accurately, unbiased-ly answered questions about what she could and could not do. But she didn’t ask.  And so I fault her, fair and square.

The report from this evaluation contained one sentence that gave me pause:  Maya’s cognitive functioning is in the Extremely Low Range as compared to her same age peers.  This score is in the 0.4th percentile, meaning that she performed as well as or better than 0.4% of children her age.

Given the inaccuracy of the observations about her receptive language, I should have dismissed it outright.  And eventually, I did, but for the first hour or so after I read it, it stung.   And I doubted Maya, and I doubted myself, and I wondered if this lady could have seen something that I haven’t been seeing.  And then I shook it off, but a little dark shadow lingered . . . because no matter how sure of yourself and your child you are, when you see terrible things written about them on official letterhead from an official professional a dark shadow of doubt lingers, at least temporarily.

And that brings us to December 2012.  Two years later.  A new evaluation team (2 people instead of one), a new psychological evaluation (this time for kindergarten), a new report.  This time, with truly skilled professionals---two women who were ready for a challenge, who sat on the floor when Maya sat on the floor, and climbed up to the table when Maya wiggled into a chair.  Women who turned to me when Maya was shy, giving her a break.  When they weren’t getting far they asked me what I thought might work, welcoming my input and encouraging me to pull things out of my own perpetually stocked bag of tricks . . . m&ms and stickers and a juice box, oh my!  And Maya worked for them, answering questions and taking breaks and playing games, and 90 minutes later we had more accurate data than anyone had ever collected about Maya, ever.

I waited anxiously for the report.  Weeks went by.  I was nervous, and mad at myself for being nervous.  My hopes were up and I hate getting my hopes up.  I have a file full of reports that have taught me that they will not be accurate (in my opinion) and I will be agitated by the results.  And I’ll end up with lingering shadows that take weeks to clear away.

The report arrived, via email.  I saw it on my phone.  We did dinner and bedtime and I sat at my computer to open the file and read it, 10 pages of details and data and recommendations.  I skimmed it first, to see if it was worth reading, and then went back to read it carefully.  And finally, someone got it right.

I don’t generally talk about the numerical details of Maya’s reports, because –quite frankly- they are nobody’s business but our own.  However, I share the details below to boost the confidence of others who are receiving reports during this evaluation season and deflating.   I deflated a little when I got the 2010 report, even though I was pretty sure it was inaccurate.  The numbers made me scared and sad for Maya: 0.4th percentile, 1st percentile, 0.3rd percentile.  These are not good numbers. 

The new report has better numbers, but it has bad numbers too.  The bad numbers roll off my back now, as we’ve seen them before. The good numbers, though, those are new . . . and even more important than the numbers are the qualitative observations that are embedded throughout the report.

75th percentile:  Her receptive language is “high average” among her same-aged peers. (yes)
50th percentile:  Her academic readiness is “average” among her same-aged peers. (yes)
While certain tasks were attempted, it is felt that scores are likely an underestimation of her capabilities and potential. (yes)
Her performance on the current evaluation should be considered as a baseline of her functioning at this point in time, but should not be used as a long-term prognostic indicator. (yes)

It’s been almost 4 years since we entered the special needs world, creeping nervously into Early Intervention.  I was scared in the beginning, and worried too much about assessments and milestones and where we were and the future.  As time passed, I understood Maya more and more, and I saw her strengths and her cleverness and I believed in her, so much so that I knew the reports were not gospel .  I’ve listened to many scared moms tearfully speak about bad reports and I want to tell them---don’t worry, your child is the same child that they were before you opened that envelope.  That report might not be accurate.  Keep the faith. 

Until now, I had no data to back up my “keep the faith, ignore the reports” general stance . . . I could have just been a biased, delusional mom.  But now I have a report that confirms that the other reports were clearly inaccurate.  I have a report that says that she is smart and she understands, as much as an “average” kid her age does.  I have a report that says that I was right to trust my gut.  And with this report in my corner, I’ll say now what I wish someone could have said to me back in 2010:

The truth of the matter is that reports are just opinions on letterhead. Some reports are informed, thorough, intelligent, professional opinions on letterhead, that should be valued and reflected upon and future decisions should take their findings into account.  Some reports are mis-informed, inaccurate, not-correctly-spell-checked, best-used-for-sticking-in-a-file-and-forgetting-about opinions on letterhead. 

Reports are a means to an end.  You need them to get services,  and you should read them to get details that you might need to use to fight for services, but read it as if it’s written about a stranger. Don’t take it personally.  Bad things in reports are actually good, as they’ll help you to get additionally therapies/interventions/support for your child. Note any weaknesses that you actually agree with, so that you can target them with your child in the future.  After you highlight what you need, file it and forget about it.  Your child is the same person as they were before you opened the envelope.  You know your child better than the evaluator.  This evaluation does not have any power to predict your child’s future . . . and it shouldn’t have any power over you. 

Breathe.  Cry about it or laugh about it or do both.  If it helps, make a photocopy and shred it up, or burn it.  Then do something special for yourself (because if you have to read these reports, you deserve something special for yourself).  Then, move on.  And keep the faith.  



The Real Nani said...

Maya is so lucky to have parents like you and Dave. I can only imagine how many parents believe everything that is reported on their child, and unwittingly adjust their behavior and interactions accordingly, instead of trusting their own expertise and instincts.

Cathy Mealey said...

I do think those inaccurate, not spell-checked, just plain wrong reports deserve a follow-up. I've written back to evaluators thanking them for their reports, and asking them to correct errors and clarify points that were not well stated. I hope, if I give them honest feedback, it will improve the quality of the reports that they write for children being evaluated after mine.

It really stings after spending $3,000 out of pocket and receiving a poorly written, error-riddled report!

Camilla S. Medders said...

Great post! I too have had vastly different experiences with evaluations for my child. Since she's non-verbal, some psychologists are totally incapable of interacting with her--one of them based a report entirely on asking me questions. When I said "I don't know if she can do that, she can't tell us," she took it as a no, and the results were terrible. I tried to write it off as just something to establish her eligibility for therapies and services, but like you point out, it can be devastating to see such a misrepresentation of your child presented as an "official" document.

Anonymous said...

As a SLP and frequent evaluator I echo the coment regarding giving feedback to the professionals. At times we do use templates but I would be horrified to think parents were holding onto a report with inaccuracies about their child-if a name is wrong you have to wonder about the nummbers, the impressions, the recommendations. Even if the process and the report are a means to an end you and your child deserve an appropriate representation of the experience.

Anonymous said...

3 cheers for smarty pants Maya!!! This is great. I hate reading reports and answering questions, but you're absolutely right, they should be taken with a grain of salt and made to be useful for your child. This is a great comparison (shocking about the cut and paste though) and will certainly be helpful to others. Thanks for laying it out clearly, again!

Petersson13 said...

Thank you for this post. I work as an educational psychologist in the uk and write many of the 'needing support and therapies' reports that you refer to. I too feel uncomfortable about having to report on children I barely know and on the basis of one or two meetings. Unfortunately, there just isn't enough time to go around in order to get to know kids in a way that would help them show of their best (we are government funded and being cut further and further). That said I hope I do a better job than your 2010 lady! I also hate the way that there is pressure to describe children's skills negatively, focusing on their weaknesses, but a focus on strengths and progress tends to lead to reduced support in my experience. I think you are right to think of it as a means to an end, a trip on the bureaucratic hamster wheel, until we can find a better system anyway. I hope you will not mind if I share your post with my colleagues? I don't think we hear enough of what it is truly like for parents to experience the special needs funding system, but please know that some professionals share your uncomfortableness too.

Lucy said...

I have to say--Hurrah! Reading the snippets of good things they had to say about Maya from the most recent report brings tears to my eyes and a big smile to my face. Way to go Maya and co!

Alana Terry said...

I had to laugh about the silly doll comments that woman kept making. We've had to sit through insulting sessions like that too. Crazy. Anyway, I stopped by here from Vanessa's blog because I gave her a blog award and she passed it to you, so I wanted to say hi and congrats. Feel free to add your blog to our database. We could use someone with your sense of humor!

Marla said...

That second-to-last paragraph made me go YES YES YES. We just finished a new round of testing including one that required me to subjectively answer questions for an hour. So of course that meant that I had many answers of "Well she can do this but kind of like this but if you look at it this way she totally does it but then she doesn't..." and not the nice and neat "Yes/Sometimes/No" answers I was supposed to give. Super fun. (No wonder it took an hour, I guess...) Excellent, empowering post!

Anonymous said...

My husband doesn't read our daughters evaluation reports anymore. I usually find multiple errors on them mainly copy and paste or obsolete information pulled from other evals provided for background reference. I will always let the therapists know the inaccurate information. They always start with my daughter is a happy cute child, her appearance should not be something relevant in this reports however it is stated in 95% of our evaluations. Engaged, content, calm are better descriptions that describe her. We have been emailed other children's evaluations, had that she drinks 8 oz of fluid daily (when told she drank 8 oz 4 times a day) and typos in the report. I know the therapists are busy and are well intended but just slowing down or even asking the parents to review the draft evaluation would be great! We are in the process of entering the public school system as well and I do worry that an inaccurate evaluation will have her placed somewhere that doesn't fit her needs. And finally you have proof that your hard work and perception matches the evaluation! Yay I bet the preschool program she is in totally takes credit for the drastic improvement te reports indicate!

Deb said...

This is great! We have been on the special needs road with our son for three years now (he has relatively mild autism). The first evaluations were a nightmare. I couldn't understand how they could close my boy up in a tiny room with strangers demanding things of him and get an accurate picture of my son. Like you, over time my feelings were confirmed...his first diagnose of moderate-severe autism proved wrong. There are times we just know that we KNOW our kids, and it's a matter of time before the "experts" see what we have always seen.

Brielle and Me: Our Journey said...

I've asked evaluators to correct mistakes and explain why certain tests were used or even, dare I say it... told them their evaluation was wrong knowingm y daughter could do soemthing they said she couldn't. Evaluations are tough, whethere they are our kids' or ours. Move on and keep the faith. Yep. Love that advice.

MrsMcSpeechie said...

Thank you for sharing your story. I am beginning my career as a speech-language pathologist. This was insightful and will help me write and prepare parents for the report. Best wishes!

Unknown said...

Our first eval had another boy's name in it, not everywhere, just one place... Not too uncommon I guess. Sad.