We are still okay…

Boo has had to undergo neurological/psychiatric testing over the past two weeks. There hasn’t been any issues, other than her turning five. In our state (for insurance purposes, I believe) once you turn the ripe old age of five you are no longer allowed to be undiagnosed and/or globally delayed.

Boo had to go twice, for two hours each day, to meet with a psychologist for a battery of tests. (I think battery is a strong word, she didn’t hurt Boo). The tests varied from intelligence/cognitive testing to behavioral/autism to play skills. Part of me wanted Boo to bomb the testing, securing her services. The good mom in me wanted her to excel.

Typical Boo she did a little of both and managed to frustrate the doctor. I wish I could have Kristi’s artistic talent to demonstrate the following (I tried, I failed, I didn’t want to hurt your eyes):

Doctor: Boo stack the blocks like this (imagine, two next to each other and one on top)
Boo: (hands the doctor the blocks after banging them for a minute)

Doctor: Can Boo climb onto and out of an adult chair?
Boo: Moves said chair next to exam table, proceeds to climb on top of chair, to table, to window sill in an attempt to get out of the room. We happen to be on the 10th floor and very thankful the windows don’t open.

I’m impressed that Boo realized she had to do something with both the blocks and the chair. The doctor is distressed that she cannot follow direction.

At the end of the two days the doctor asked us if we had any questions. I ask her how she feels Boo did. She had previously thrown out words: autism, PPD-NOS, mentally disabled, intellectually disabled, ADHD and a bunch of other terms. Her response:

I have to score the tests.

Hm…now those that know me know that I tend not to be brushed off. I (politely, I swear) reminded the woman that she was an experienced professional who must have some instinct to how Boo had tested.

After a moment or two she told us that she honestly didn’t know. That she wanted to show the test results and video to not only Boo’s neurologist (whom I adore and trust) along with other colleagues. How Boo performed was baffling:

She shows signs of Autism: Will not look the doctor in the eye.

She shows signs that a child with Autism wont: She told the doctor to “look” and sought her attention.

Autism: Hand flapping, quickly distracted, would not follow directions, toe walking
Not: Social, engaging with materials, attempts to please, would put heals down when prompted by cue

Autism: lack of safety awareness
Not: asked for help when trying to get down off the exam table

Intellectually disabled: Cannot copy a “t” on the paper
Not intellectually disabled: can hold a pencil in the correct grasp

ID: Cannot follow a two-step direction
Not: Knew she needed a pencil to draw on paper

ID: Poor motor planning
Not: Pushed chair to get to top of exam table

The examples go on and on. In the end the doctor said at this point Boo is a Medical Enigma.

Where have I heard that before?

She will convene a team (about damn time) to look over everything. She agrees (as do neurology and genetics) that whatever is going on is neurological in origin. In the end it doesn’t really matter what “term” they give Boo. I think Bridgetitis is a lovely term. We will continue to advocate, get therapies that work and love her the same with or without a medical diagnosis.

At five years old, she remains undiagnosed and we are still okay with that.

9 thoughts on “We are still okay…

  1. icansaymama

    How that all reminds me of our little man. This is so familiar to me!

    We will have some testing on Autism in January/February but our developmental paediatrician is convinced it is all due to some genetic stuff. Well… I don't know what to think by now.


  2. Kristi Campbell

    Brigetitis IS a fabulous term! I'd have done the drawerings for ya, but probably not in a timely manner, so there's that. With that said, if you've got time in another post… 🙂
    Tucker hasn't had the neuro-psych tests yet, but even in his early intervention tests, he did the “if he can't do this, he shouldn't be able to do that” stuff, along with “if he CAN do this, he should…” um, yeah. Not. You are still okay, and so are we! YAY for weird and okay! XOXO and Merry almost Christmas, you!!!


  3. Janine Huldie

    I love that term too and will say I would have loved to see your drawings, because they couldn't be any worse then my own. Seriously my husband is the artist not me, so I totally would be the last to judge on that. Also, just wanted to wish you all a very, Merry Christmas, too and so happy that at least the testing is behind you for now.


  4. Sylvia

    Go Boo! Sounds like she did great to me! This is of course not professional advice, but perhaps she can do all those things but can't process the language! Her receptive language skills might be a little off. We have to give Bethany an enormous amount of of time to process what we say to her in order for her to understand directions or anything really. I think Bethany must also have Bethanyitis!


  5. Dana Hemelt

    Tests try to put people into boxes, and not everyone fits neatly into one box. You have a great attitude about the whole thing, Kerri, although I'm sure it's not always easy.Wishing you and your family a better-than-ok Christmas!


  6. Lizzi R

    Very cute term, that 🙂 Do the drawings anyway – your last ones were good.

    I don't know whether I hope that you get a diagnosis or not, but I'm glad that all the confusion has been recognised at a medical level, officially. That's gotta feel good.


  7. Big brother, Little sister.

    Kerri, Wishing you and your beautiful family a very happy Christmas. I have loved following both yours and Boos journey this year xx I look forward to cheering boo on next year as she surprises us all. Lots of love Bron and the family from Australia xx



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