Assessments Are Not Our Friends

Well, I got Noah’s assessment/evaluation report back from his new speech therapist last this week.

I read through it in the speech therapist’s office during Noah’s appointment. Kind of hard to hold back the tears.

(A lot of this is pretty technical and maybe uninteresting, but writing (typing) really helps me process it all.  I won’t hold it against you if you duck out of this post early.)

The therapist said it was pretty consistent with the diagnosis of Down syndrome.

Noah underwent the PROMPT Neuro-Motor Speech Assessment, the Oral and Written Language Scales – 2nd Edition, the Primary Test of Nonverbal Intelligence and the Diagnostic Evaluation of Articulation and Phonology.

The evaluation report is broken down into the following sections (I’ve summarized most of this)

Physical-Sensory Neuro-Motor Speech –  Noah’s mouth and face is physically within normal limits except for a high and narrow hard palate.  Noah had difficulty with imitating lingual (tongue) motor movements.  Noah improved when movements were demonstrated for him visually.  He was able to round his lips with tactile kinesthetic support (therapist’s hands on Noah’s mouth/face).  Diadokokinesis – “Noah was able to produce p^p^p^ and t^t^t^ verbal approximations with decreased rhythm.  He was not abl eto generate k^k^k^, p^t^p^t^p^t^, nor p^t^k^p^t^k^.”

Summary:  Noah’s oral muscles are normal structurally, but he lacks the functional control required for speech.

Diagnostic Evaluation of Articulation and Phonology score – .1%.  Percent of consonants correct = 18%.  So he’s on the chart, but just barely.  This score is measured against typically developing peers. 

MOTOR SPEECH/PROMPT Assessment – Adequate to low global tone – this is a good finding for a person with Down syndrome.  Noah’s global tone is relatively good.  Phonation and breath support are adequate.  /a/, voiceless phonemes and nasals /m/ can be produced.  Consistent resonance.  No hyper/hypo nasality.  Jaw does not demonstrate controlled degrees of freedom.  Overexcursion noted.  Anterior and lateral jaw sliding.  Lips do not move independently from jaw.  Lips do not demonstrate consistent control for appropriate protrusion and retraction.  Tongue does not move independently from jaw for anterior to posterior lingual contractions.  All oral muscles move appropriately during connected speech.  Facial muscles do not show appropriate combined alternating movements.  All muscle groups do not exhibit symmetrical movement, independent and coordinated functioning in connected spontaneous speech.  Timing for co-articulation is normal for age.

COGNITIVE – LINGUISTIC – Expressive-Receptive Language – (again measured against neuro-typical peers) – He wasn’t even on the charts for oral expression, listening comprehension was at the .1 percentile. 

Summary:  Severe expressive-receptive language disorder.   Strengths in the area of comprehension of simple linguistic concepts – quantitative, spatial, pronouns and colors.  Increased use of symbolic representation skills – parallel play, symbolic play and pretend play.  (Let’s hear it for Miss Lindsey and Michelle who worked on all this stuff so hard with Noah!!!!)  Noah was also able to follow 1-2 step commands with the use of gestural cueing. 

Weaknesses – Comprehension of more difficult linguistic concepts as well as use of verbal communication output. 

PTONI – Primary Test of Nonverbal Intelligence.  This is the one that killed me.  This test evaluates Noah’s general reasoning ability.  “The PTONI provides information about a child’s general intellect.”  Noah’s score did not even register in the percentile ranks – it was so low (11).  This puts him in the category of “Very Low.”  See, when you look at the current research on people with Down syndrome, their degree of intellectual disability now expected falls in the mild to moderate range.  “Very Low” means to me he’s probably even further down the curve than average Down syndrome.  I know, I shouldn’t care about these things, but this is my kid we’re talking about here.  I should ask for clarification from the speech therapist on my assumptions about these scores.

SOCIAL EMOTIONAL General Behavior Observation:

Attention – appropriate level of arousal and age-appropriate focus to tasks.  (YAY ) Minimal redirection and modeling was given for start-to-finish sequences and unfamiliar motor/action schemas.

Rate of Processing/Responding – Processing Rate seemed appropriate but inconsistent.  He responded to his name but did show difficulty with imitation of oral motor sequencing.

Emotional Control/Affect – Appropriate.  (YAY)

Drive/Motivation:  Noah present with increased motivation and curiosity for social engagement or joint interactions and/or routines.  YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY (It’s in his blood, by the way – thanks, Mom!)

Memory:  Within Normal Limits (YAY – this is HUGE in learning)

Highlights of the summary – Noah was pleasant, transitioned easily, cooperated, motivated.  Participated in turn taking.  Adequate communication intent and sustained focus to tasks with appropriate affect.  Noah appeared to enjoy his interaction with the clinician.  Use of communication for behavioral regulation (requesting/protesting) falls in the verbal category.  (YAY!!!!  We’re finally out of “nonverbal.”  Hallelujah!  Communication for comfort, greeting, calling , requesting permission and showing off and joint attention, commenting requesting, providing information fall in preverbal to verbal category.  (I’ll take it!)

IMPRESSION – Severe cognitive-linguistic language disorder.  Severe neuro-motor speech disorder.

Mom’s impression:  This report reads like a gosh-dang prescription for PROMPT therapy.

Sigh.  So much for hoping for mild to moderate.   I haven’t had the heart to Google any of this stuff.  Maybe I will, maybe I won’t.  It won’t change anything.  And really, interpreting and summarizing all this has allowed me to see some encouraging things (hence the YAY YAY YAYs).  The first read was a bit like a kick in the teeth, if you know what I mean.

Please pray for Noah – for the words of his heart – and for his momma too – that she might have a little wisdom and discernment in what to do to help her courageous hero.

Thanks and Blessings,

Alyson

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15 thoughts on “Assessments Are Not Our Friends”

  1. My heart is heavy w you. We have not yet done any standardized testing but my husband and I were talking about this the other night…realizing the results may not truly reflect the potential of our son, Nate. We know that may be hard to swallow and accept. But then again, as I read your post just now my eyes filled with tears thinking about the day he was born. The doctor came in to tell us he suspected Nate had DS. I had nursed all of my babies and he told me because of his low tone and heart defect he thought he would be unable to nurse. My heart sank. Our very determined nurse called the ICU and told them she was bringing me down in my recovery bed to see him….she ignored their adamant “no” and told them to move isolettes. She wheeled me in and her first question was “do you want to nurse him?”. I looked at her in bewilderment. She laid him next to me and he latched on and nursed like a champ. The tears flowed as I realized that Nate was already proving that someone’s assessment would not define him…he was already showing me what HE could do. Assessments give us good information to guide treatment focus but they don’t define potential. Let Noah joyfully surprise you as I’m sure he does everyday!
    From one mama’s heart to another,
    Jenny

    1. Thanks, Jenny. Noah wasn’t diagnosed until he was 6 months old, and he was my only child to have difficulty nursing. If I would have known he had Down syndrome, I probably would have given up, but because I didn’t have any “reason” why he shouldn’t be able to nurse, we stuck at it. As difficult as it was, nursing him was the best thing I could have done for him. Glad your nurse was more with it than your doctor was. I feel in my heart that the assessments are not an accurate measurement of Noah’s level of intelligence, but it’s hard to fight in my heart what’s in black and white. And that brings us back to the fact that it really doesn’t change things either way, we still put one foot in front of the other and do the next right thing. Thanks for the understanding – it encouraged me.

      Blessings,
      Alyson

  2. I think we’re about 2 years behind you, but on the same path. Sierra has her new SLP eval in a few days. I’m hoping for some progressive therapy that Noah is now getting.

    As far as evaluations not being our friends – I agree emotionally. However, now you know what he’s up against and what he has going for him. Now you have that ever-so-critical justification for his speech therapy services in writing. That may be useful for the insurance companies who dictate medical care from afar, but never get to see him personally and recognize that he “gets” more than he can verbally share.

    Thank you for that detailed post. It’s helps moms like me.

    1. Thanks so much for the feedback!!! I wasn’t sure if the detailed entry would be helpful or not. I’m glad it was. I’m skeptical of “progressive” therapies, but PROMPT really does make so much sense, especially in light of the fact I suspect Noah has apraxia as well. And you’re right, having the evaluations are really important. It simply has to be done in order to have be able to objectively track where he is and how he is progressing. I think I’m going to look into assessments specifically for kids with special needs or something that would measure what he CAN do right now. The current ones told me too much about what he can’t do. Hope the eval with your daughter goes well!

      Blessings,
      Alyson

      1. I’ve been wondering if Sierra has apraxia for over a year, but only in January at a DS clinic did an SLP actually indicate that she thought it was possible, too. Se will be doing the full evaluation on the 21st. I don’t want that diagnosis for her, but I do want her to get the right help. Sierra will be 4 in April.

      2. Right about the age I started suspecting apraxia with Noah. Don’t know if you know all the controversy surrounding apraxia and Down syndrome – many old-school SLPs deny a child with Down syndrome can even have true apraxia which they define as apraxia in the absence of any underlying cognitive or speech issues. But the truth is that treating ANYBODY, DS or no DS, who has apraxia requires specific apraxia-based intervention. I believe Noah has apraxia along with the typical DS speech issues, and no matter how hard we target his typical DS speech issues, if the apraxia is not addressed, he will be limited in his progress. So I encourage you to press on in pursuing either a diagnosis of apraxia or for it to be ruled out, and unless a SLP can rule it out, even if they don’t want to diagnosis it, you can still ask for them to use apraxia materials and techniques as part of her therapy. Even Noah’s last therapist who would not diagnose apraxia (but also wouldn’t rule it out) agreed that he responded very well to Kothmann and tactile prompts, so she incorporated them in most sessions. Speaking of Apraxia by Leslie Lindsay is a great resource, as is all of Libby Kumin’s materials. Please let me know if I can help you by sharing any of our specific experience or ideas.

        Blessings,
        Alyson

  3. I bet if your SLP had counted his sign he would have done much better! He seems to be doing quite well in so many CRUCIAL areas, you must be so proud!

    Being classiifed as verbal is so exciting! All of the hard work you do is really working!

    Sorry so short…of to our SLP lol .:)

    1. You’re right, of course. Making the jump from nonverbal to verbal is huge isn’t it? I’m holding on to that today and am going to try to rejoice. The SLP is focused on getting rid of all the funky adaptations Noah has acquired in order to compensate for his lack of muscular coordination in his mouth. I think those adaptations are there because they were necessary for Noah – without them, he could not have made those initial sounds. So now it’s just time to refine. Kind of like a kid with muscular issues learning to walk. You teach them to walk any way they can and then you refine how they walk to reflect as normal of a gait as possible. Sometimes you can teach good patterns from the getgo, but sometimes you’ve just got to get them walking any way you can. And we got Noah talking (or at least making sounds) any way we could. It’s probabaly good that the SLP is so focused on the detail, it’s probably exactly what Noah needs, but this Momma needs to remember the big picture and hold on to the fact that they boy who was not verbal now is.

      Blessings,
      Alyson

      1. I know what those evaluations can do to your heart. It’s hard to see in black and white what the numbers are. You work and work and think you are doing so well and then you see it’s still a big mountain to climb. It’s frustrating.

        But just remember, every mountain is climbed one step at a time and you are making progress! It’s difficult to adjust and relearn but I am confident that if the therapist thinks it’s necessary than it must be. The big picture is hard to see…it always is..but just keep doing what you are doing and Noah is going to be great.

        And I still think that even if your SLP doesn’t “count” the sign, it’s a valuable tool of communication that you both should be very proud of. Not all parents would put as much work in as you, you should be personally very proud of what he has accomplished!

  4. I keep thinking of Noah’s knowing his clothes were wet, putting them in the wash, then choosing his new clothes and dressing himself (you wrote about this earlier in the week).

    How does that relate to the Primary Test for Nonverbal Intelligence you mention above? Certainly he nonverbally perceived a situation that needed action. He made a plan, carried it out, and achieved the desired result.

    Yep, that drive and motivation stuff…so important that things matter to us. Social interaction…absolutely. The size of your family is ideal for his developing social skills. The loving nature towards him of your children is a big factor. I’m grateful the passed-on genes are helpful. They’ve bloomed in you, as evidenced by this blog. xxoo

  5. I know you feel gutted. But, don’t get discouraged. I pulled out these quotes because they show that he has a lot of things in place that have the promise of working better than they do now. “Noah’s mouth and face is physically within normal limits” “Noah improved when movements were demonstrated for him visually. He was able to round his lips with tactile kinesthetic support” “Noah’s global tone is relatively good” “Phonation and breath support are adequate” “Noah’s oral muscles are normal structurally” “All oral muscles move appropriately during connected speech” This proves, Noah has tools in his tool box. Praying that this new program teaches him to use them to the very best of his ability. Prayers sent to you too mom – you are his hero.

    1. Ohhhh, thanks so much for the encouragement.! Amazing how much positive you found in there, and you make a really good point. He’s got what he needs physically to talk. It would be much harder (perhaps impossible) to address physical impairments to his speech than it will be to address the cognitive/motor/coordination. Tools. I like that.

      Blessings,
      Alyson

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