Not to be melodramatic or anything, but today something happened that completely shook my faith in everything I’ve come to believe about Sophie in the last 7 years, 10 months and two days — something that slammed me hard, right back into that bed in that hospital where she was born. Where the doctor told us he was wrong, that he’d said the baby didn’t have Down syndrome but the test came back and she did and — well, he didn’t say much after that.

The doctor left the room and I opened my mouth and cried like I’ve never cried before. I cried for Ray and Annabelle and for Sophie, I guess, but mostly I cried for me. I mourned the lives we’d thought we’d have — you always hear that from people who have kids with special needs, and it’s true. And I sobbed out of fear, because I had no idea what sort of person this tiny, yellowish, black-haired baby would be.

And then she grew. And so did I. We got Sophie all the therapy, all the “early intervention” we could scrape together. The helmet didn’t fix her flat head but the heart surgery worked (and when it failed, another operation worked, knock wood) and Sophie learned to walk (finally) and use the toilet (eventually) and she went to school.

Something remarkable happened at school. To a person, Sophie’s teachers and therapists all reported that she was remarkably intelligent. At first I thought they were just being nice, but after a while I leaned into it and it felt good to think that my daughter was smart. A new definition of smart, to be sure, but smart. When Sophie left pre-school there was a lot of talk and testing and scores that exceeded all expectations. I’ll admit it, I got cocky.

This isn’t about entrance to the National Honor Society. It’s about entrance to society in general. From what I can tell, only the smartest people with Down syndrome really have a shot at a quality life — at some measure of independence, love, meaningful friendships and work. I needed to believe that Sophie had a shot at that. Wouldn’t any parent?

In kindergarten, Sophie wrote her name at the end of the first week of school. She learned her letters and numbers and she held her own, and when the school said she couldn’t repeat kindergarten because she’d mastered the curriculum, I believed them. Ditto with first grade.

Sophie learned how to read. I couldn’t believe it, but she really and truly could read. Can read. The glowing (new definition of glowing, but still, glowing) reports continued. Second grade is tougher, for sure, but just two weeks ago, I sat with the teacher and the special ed teacher and they pulled out standardized test results and showed me how well Sophie is doing. How remarkably well.

Sure, I said last month, when it was time for Sophie’s three year re-evaluation. Give her all the tests. I knew that Sophie had behavior issues — trouble paying attention, following directions, probably a full-blown case of ADHD — but she’s smart. Give her all the tests, I told the school psychologist, a woman I’d never met.

Today we had a Big Meeting with all of Sophie’s teachers and therapists, the principal, some lawyers, the head of the district’s special ed program and the psychologist. Ultimately, all the data presented will help determine what services Sophie gets, and how her classroom setting will look — since third grade is a Big Step — but for today we were just reviewing the material.

I had a bad feeling. I’d flipped through the super-thick pile of papers I printed from the file the school sent over yesterday, and hadn’t been able to make much sense of it. Funny, I can analyze all kinds of reports and statistics for a newspaper story, but when it comes to my kid, all the numbers just swim across the page, not making sense. I even fumbled with the cassette player I brought to record the meeting, and I’ve been taping meetings for work for years.

So I wasn’t fully prepared for the numbers the psychologist put on the table. The low numbers. Really low numbers. Eye-stingingly low numbers.

Oh geez, ha ha ha, during the testing, Sophie pushed me every step of the way! the psychologist chirped, laughing. Took off her shoes and socks, pretended to pass gas. You name it.

I didn’t smile, even though I try to be friendly in these meetings. (I hate these meetings, even when good things are said.) Sophie’s lawyer (yes, Sophie has her own lawyer) said something about standardized testing not always reflecting true ability.

Next the academic findings were presented — glowing.

As we neared the end of the meeting, I couldn’t help myself. Look, I said, I need to say this for the record, while the tape recorders are still going. I get that as the mother, my opinion is, at best, flawed but compelling. But I have to say it. You all are reporting that Sophie is doing such amazing things. Reading so well, progressing at math. Terrific vocabulary. The only one who doesn’t have good news is the psychologist. And she’s the only one who hasn’t ever worked with Sophie before, who doesn’t know her.

I know her! the psychologist chirped.

Look, I said to the special ed teacher. I know Sophie tests you, but would she take off her shoes and socks with you?

No, the special ed teacher said softly, looking nervous.

I’m just saying that it seems pretty remarkable that Sophie can do all this stuff you say she can do, and her IQ is so low, I concluded.

Remarkable! the head of special ed for the district chirped from the other end of the table.

“I believe Sophie’s IQ really is 58,” the psychologist said, her voice rising — and shaking a little. “Sophie has the cognitive abilities of a three year old.”

And with that, my world crashed at my ankles. The entire world I’ve built, these last 7 years, 10 months and 2 days. A house of cards, full of platitudes and extra-kind words for the stressed out mom of the disabled kid? Maybe. But it was my house of cards. And now those cards were settling on the industrial school carpet under the big conference table.

Numbers, I can deal with. That comment? No way.

Around that table, silence.

Silence from the adaptive PE teacher, who last month caught me outside school and, with tears in her eyes, told me Sophie was the most incredible kid she’d ever seen — told me she was sure she’d one day live all on her own.

Silence from the teacher who, on more than one occasion, has told me that Sophie is utterly amazing — that with the help of computers, she can’t imagine how far the kid will go. And her reading!

Silence from the speech pathologist, who just moments ago had been going on about Sophie’s vocabulary.

And then several people started to talk at once, about how cognitive tests are almost always given by someone unfamiliar with the child, that a trained professional must administer them.

I get that, I said. I get that. And they moved on.

Not me. The meeting finally ended, and we filed out into the parking lot, but for me it wasn’t over. I couldn’t eat dinner, even though I’d skipped lunch. I rushed off to teach my writing class, then stopped at Target and bought — among other things — the purple nightgown Sophie’s been begging for. I made it home just in time to give it to her (Annabelle got the ballet skirt she’s been wanting) and sing both girls to sleep.

I cried all the way home, and this is terrible, but I was wondering how I’d feel when I saw Sophie. Does she have the cognitive abilities of a 3 year old? Really? Has all the rest been total bullshit? Does it matter? She’s still my dear, sweet, stubborn, funny, smart (yes, smart) Sophie. Even if all my expectations for her have been dashed –for now, anyway — by that psychologist.

Who knows. Maybe that woman did me the biggest favor yet, by telling me the truth. One thing’s for sure: I won’t be on solid ground again for a long time, if ever. And maybe that’s not the worst thing.

Another thing’s for sure: Sophie is still my Sophie, still the awesome girl I sent off to school this morning in her ridiculous Minnie Mouse hat from Disneyland because she absolutely insisted, the one who will find her way into my bed later and kick me all night.

Nothing will ever change that.

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Tags: Filed under: Down syndrome, public school, therapy by Amysilverman

29 Responses to ““Sophie has the cognitive abilities of a three year old.””

  1. Oh Amy…. I teared up at this post. So vulnerable , so raw. WIsh I could just reach out and hug you.
    I know that each of us comes at this in our own unique way. The fears subside and then rush up like this- in these kinds of situations especially.
    I work in mental health, I see the discrepancies between testing and functioning. I KNOW that that test means absolutely nothing except that it measures areas that she might need more support than others. That single number is an abstract measure. The only areas of testing that really mean anything are the areas of strengths and weaknesses – that will give you the info that you need. Predictions based on IQ are completely meaningless except in a very vague way, relative to others.
    I KNOW this- as a professional.
    Now, as a mother- YOU are the expert and you are right on target about what you observe. Don’t let those numbers define Sophie and don’t let the school do it. Anyone who loves Sophie knows what you know.
    What we know.
    It’s harder when a parent has pre-existing ways that people are supposed to turn out and you have been learning/un-learning those pre-conceptions beautifully. This is a challenge for you and I know that you will move beyond it.
    Sorry for the long comment..
    Love
    Starr

  2. oh, Amy. I wish I had something good or useful here.

    it’s funny, because we just had an IEP meeting and the reports were generally really good. Abby’s doing well, they were surprised she knows all her letters, etc. and part of me is so proud, and the other part is waiting for the other shoe to drop. Which feels awfully cynical, but on the other hand, is it naive to think it isn’t going to happen?

    I have no clue. I do know that I hate hate hate all the testing. 58? whatever.

  3. 1) When you & I first “met” a couple of years ago, on This American Life, the professionals had suggested that Sophie might not score low enough to qualify for special ed services !

    2) The 80/20 rule applies for educational psychologists, too: 4 out of 5 are not particularly talented. Interesting that this psychologist’s report does not intersect the observations of other educational professionals.

  4. what a gut wrenching post and day you must have had yesterday……

    its funny i was out shopping yesterday and was thinking of you, i even bought a little something for you. maybe it was the universes way of telling me you needed a boost.

    sophie is a lucky lucky girl to have you as her mother, someone who loves her no matter what and advocates for all that sophie can get!

  5. Your post is wonderful. I agree with Robert Polk, who is defining the psychologists talent? Not that I agree with testing, but perhaps it would set your mind at ease to have the tests administered again by someone else.

    Hugs to you and your girls.

  6. At the gym, sweating, post-workout, and crying in the locker room. I am sorry that happened and can feel and relate to your pain. Our teachers all talk about how smart G is, how she’s right on track academically (in a three year old class–so…), most her issues are behavioral. But I keep waiting for that other shoe to drop. This shit is hard.

    Many hugs from a mama in the mid-Atlantic. Sophie is amazing an I hope G follows in her footsteps!!!

  7. Amy,
    I feel for you – really. Please keep the perspective, however. While this person does not “know” Sophie, a number really is only a number. Don’t give up the hopes you have for her – as, whatever the “number”, Sophie will feed off your drive and ambition. She WILL succeed and she WILL do all the things you hope for – because you will instill in her a sense of CAN, rather than can not.
    We can share like stories all day long – but there is really no point, is there? Madeline’s doctor told us the day we brought her home she’d “never be a rocket scientist… more like a potted plant”. Yep, he said that – and I am hell bent on proving him wrong. Madeline is also proving him wrong at every turn – and he remains on our holiday card list so we can share her annual accomplishments… those he felt she’d never reach.
    Opinions are like…. well, you know. Take that to the bank – that and the fact that school personnel are never those whose ultimate “verdicts” I’d give much credance. If you want a second opinion for the Psych, you can ask for it. Demand it – and make the school pay for it. It may not change the numbers but, hopefully, the approach might be a little more kind.
    (on another note: Lawyer? Head of Spec Ed? These people attend YOUR meetings? Damn! I’m jealous!) :)
    Hugs to you – and dear Sophie!

  8. I want to tell you something.

    When I was pregnant with my first child I spent 3 months in the hospital where I had testing done. Even though my IQ was fine, because of other things, the psychologist told me that I would never be able to have a job. That I wouldn’t be able to deal with a job. The messages I received for 12 years pointed this way. They were glad that I was married so I could be taken care of.

    I look back now and know that this is total bullshit. These were ‘good’ doctors, they ‘knew’ what they were talking about. I believed them. I fell into their trap.

    Sophie can read. Sophie can do many things that they, by saying she is like a three year old, should not be possible for her to do.

    You know me, so look at what ‘the professionals’ said about me. Take it all with a grain of salt. You know inside what the truth is. You really do.

  9. Sophie is a funny, smart and creative little girl… Those are all signs of intellegence. One test one time that apparently doesn’t take into consideration what is being reported ‘in the field” cannot be the end all to Sophie’s future. She will soar because the one thing that she has that no one else has is you… a mother who is upset at a 58, but won’t give up. You are her rock even if you cry and someday you will watch her move out on her own and have a life that is purposeful and good.

    <3

  10. oh amy.

  11. People are not a piece of paper. People cannot be defined, their potential measured, by a single test. Sophie is what you see, what you know, what you hear, right there in front of you.

  12. The true measure of Sophie’s cognitive abilities will be the relationships she forms and the manner in which she navigates her way through life, both of which I’m betting will be awesome just based on the little I’ve read here and know about you.
    When my mother was young, she suffered a traumatic brain injury that left her in a coma. When she came out of it, she couldn’t speak, couldn’t eat, couldn’t feed herself, use the restroom, or even walk. The doctors told her parents she was never going to do those things again. They labeled her retarded and decided there was nothing more in store for her future than a pack of crayons and a bib to drool on. It took her a long time to prove them wrong, but she did. School was not a kind place to her. Everything on paper said she would never. She would never read. She would never write. She would never graduate from high school. She would never go to college. She would never amount to anything, because the damage and resulting cognitive deficits were just simply too large for her to overcome. And yet, my mother, as an adult, graduated from college with honors, and went on to work for and run a newspaper in the town we lived in. She earned her master’s degree a few years ago after leaving the paper and going to work for Adult Protective Services as a social worker. All those nevers went away.
    I know that my mother’s condition is not Sophie’s in many ways, but I shared it because they are similar in some. Pen and paper tests and the observations of a stranger are not enough to undo all that is Sophie, all that you have come to know and expect of and for her. There is more to her than can be measured on any assessment, or by any doctor. You see that every day. Please don’t let one person’s pronouncement stop you from believing it.

  13. Amy,
    What I find most striking about this post is your willingness to be an advocate for your kid and ask questions. In the end, you know your child. I have no ability to comment on the evaluations, that stuff is above my pay grade. But I do know good, compelling advocacy when and I see it and you did a great job of that for your family. I hope the next eval is more insightful.

    -m

  14. Maybe all you learned from that psychologist was that Sophie does not test well with an unfamiliar tester. And the fact that the psychologist did not at least mention that as a possibility I find very odd. Maybe she felt her professional skills were being questioned, but that is not the point. One of the hallmarks of a many special needs kids is their difficulty generalizing skills to new or unfamiliar settings. Maybe there should be some goals on Sophie’s IEP that relate to that, instead of wasting everyone’s time concocting simplistic “cognitive ability” statements based on Sophie’s questionable, and difficult to interpret IQ scores.

  15. Im so sorry to hear about this painful experience! She is such and shiny, amazing, lovely, girl who you know I adore.
    I believe Sophie’s gifts are beyond what any test can measure and I hope you seek another opinion.
    love, Brigitte

  16. Amy-

    My heart melted while reading this post. As a special education teacher, I try to feed positives at IEP meetings and I would never stand for information (even if true) to be presented in that manner. I often disagree with the way psychologists and other therapists, who do not work with the student, administer assessments and present the information in reports.

    With that being said, I am so happy that you stuck up for Sophie as her mother. You do know her better than anyone else and you have every right to question the assessments/reports. Why are they so contradicting? If the teachers and direct care therapists are reporting higher scores, that should be taken into consideration…. even if their assessments are informal, not standardized.

    Please keep fighting for Sophie’s rights! And remember, you do not need to sign/agree with an IEP if you do not want to. Please let me know if there is anything I can help with. I adore Sophie and she will always hold a special place in my heart!

    Melissa Bam

  17. Amy-

    After getting over the horrible pit in my stomach from this post, I realized:

    1) I don’t know many three year olds who can read as well as Sophie;

    2) That only a three year old would say something as horribly wounding and defensive as “Sophie has the cognitive abilities of a three year old.” And no one older than six would refuse to apologize for saying so.

    3) Plenty of really “smart” people in this world lack the necessary social and emotional prowess to relate and find happiness in this world.

    Keep the faith.

  18. Amy, why was the woman even at the meeting and why did she need to perform tests on Sophie? You have the right to challenge her results. When Johanna’s evals came in from the preschool special ed Pre-K team I was floored. They claimed she was at the level of about a nine month old, and not able to do all the things that her Birth to Three therapists have seen her routinely doing for over a year.
    They used those evals essentially to dumb down her goals, and they do that routinely in my district so they don’t have the pressure of actually having to work with her to ensure she learns something. Money is really stretched tight here, as I am sure it is in Arizona.
    Is the school using the psychologist to make a case–ie, to say Sophie can’t function in an integrated classroom and she should go off to special ed land? If so you should challenge it. You have the right for an independant evaluation which the school has to pay for. If she’s just there for window dressing, then I would ignore her and just focus on the other reports and what your kid can do.
    I hope your lawyer was all over her.

  19. I love you Amy. Sending a big hug. Testing sucks. Truth is cold. I

  20. As someone who isn’t a great standardized test-taker, I have come to understand that tests measure some
    things, but certainly not everything. Sophie is an exceptional person regardless of what a silly test (or a silly psychologist) says. I know you will continue to fight hard for this amazing child.

  21. Yes, to what everyone else has said. Three-year-olds can’t read. Can’t write their names. Can’t have a BFF who is a second-grader. Sophie can do all those things. One outlier test by a foolish psychologist does not mean that you have been misled all along.

    Three-year-olds can’t even push most adults’ buttons as well as it sounds like Sophie pushed this psychologist.

    As someone who is actually uncannily good at standardized tests, yet truly not-so-good at dealing with lots of human situations, I’ll add my opinion to the many here who have written that standardized tests measure very little. Especially IQ tests.

    The good news is that this low number might help you get Sophie more services. Instead of limiting her, it might help her — especially because you’re not going to let this single number define her.

  22. f*ck this noise. Sorry, but that was my immediate reaction to this post — how anyone could say that to you just makes my blood boil. And the fact that the other teachers didn’t say anything to refute this… man, that makes me angry, too. So she didn’t test well that day with that person, so what?

    If Sophie in real life is HALF as kick-ass as you present her on this blog — hell, if she’s a quarter — then she. is. amazing. period. (I know there’s a period there already, but I’m feeling especially emphatic at the moment).

    I was telling my wife (also Amy) about this post, and she both started to cry and just got mad for you, for Sophie, for all the families like ours who have to listen to strangers put a bullshit number value on our kids and then get to go on with the rest of their day, probably not even thinking about how they just destroyed — however momentarily — your image of your own kid. It’s stories like these, combined with our own experiences, that make us think about just taking Archer out of the system completely, because who needs that crap?

    Archer’s often non-responsive with new people, and I dread the day he has to take some sort of standardized test and/or be “evaluated” by someone he’s never met.

    *Also, I have to say, from what you write about Sophie’s actions during the test, it sounds like she more or less intentionally bombed it. I swear sometimes my kid knows when he’s supposed to do the song and dance and intentionally refuses…and why shouldn’t he? The whole “testing” process is just a game — one that only really has significance to the tester and maybe the testee, if the testee is at all attached to the results, and maybe Sophie refused to play that day — why would she possibly care about the results some strange lady put down on a piece of paper?

    It’s late and I’m feeling incoherent, so I better stop, but I guess the point is I feel your pain. And I hope you don’t let it get you too down for too long.

  23. Hi Amy, I’m sorry the day was heavy for you.

    You know how much my family loves Sophie and all of you. You and Ray surround her with amazing experiences and talented people. Sophie has just the right parents for her, and just the right big sister- – sweet Annabelle.

    The thing that stands out in my mind this morning is that you have an awesome community that is behind you all the way. We are cheering for Sophie and her family.

    This is not the first time in history that a number doesn’t represent the whole story. In your line of work, you know that most stories in the newspaper are only a “slice” of the big picture. As far as the psychologist’s limited “slice” goes, Sophie defies that number.

    Sophie is a beautiful, complex human being whose story is still being told. I for one can’t wait to read the next exciting chapter of Sophie’s life—more sleepovers, trips to see new places, and new educational experiences and milestones.

    Love to you, Rachel

  24. Thanks Amy, there is so much love in your words when you write about your family, the emotions are palpable. I appreciate being back in touch with you. Blessings. xo

  25. What a wonderfully written piece about a most difficult topic. Those girls are so, incredibly lucky to have you as their mom…so lucky you are there to fight their battles.

    For what it’s worth, (and it probaby isn’t much), I had a school psychologist make an unsettling remark about me in the 6th grade. I, in turn, made it my life’s mission to prove her wrong…which I did. I would venture a guess Sophie might just do the same thing! Certainly a different situation, but your post brought back those memories and I felt I could identify with little Sophie a bit.

  26. Ok… First, there is a huge difference between an opinion and the truth. Amy, I hope you can see that the psychologist gave you her opinion. And, she gave it from a place to total ego and no heart. Second, it is my humble opinion that tests suck at measuring anything that is of value.

    Your dreams for sophie are bigger than that room, and the opinions of the day, and I know that the dreams always come first.

  27. Hi Amy. I don’t have anything wise to say — I wish I did. I know that when we decided to adopt in our 40′s there were many naysayers. They said we’d face many obstacles from our age to our economic resources — we’d have to go international or have an older child (not the baby we longed for.) We ignored everyone and powered forward and 6 weeks after we filed our paperwork we were parents.If we had listened to all the negative comments (oftentimes supported by statistics) we wouldn’t have our lovely daughter in which case I would never have met you and taken your wonderful class. Sometimes the facts are just the facts and they are not really related to you and your situation. Keep doing what you are doing. You know Sophie and you know your family. You are amazing.

  28. As a teacher…a child is never ever a number. As a friend…my heart is aching for you. As a believer in children…Sophie is going to be just fine.

  29. F*ck that guy. You know that any one test result or any one component is not a whole child. There is no way that guy got an accurate view of Sophie. Took off her shoes? Pretended to fart? This kid is a genius. Thank goodness she has you for her advocate. None of those tests counted that.

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