Saturday, September 13, 2008

The Assessment (#1)

When I was told that I would have to drive nearly an hour south of my house to have Bubbles' speech assessment (for Apraxia testing) done, my response was that it was just fine; I didn't mind driving to San Francisco (1.5 hours north), as long as the person was qualified.
Our regional center (which is a fabulous superlative among other regional centers) (in other words, I implicitly trust them) assured me that they had contracted with a speech pathologist who had over 25 years of experience. No worries, right?
I was a little surprised, after I wound myself up a redwood lined road, to be introduced (by speech pathologist A, the person with whom the appointment was made) to another woman with a small bag of toys and a large stack of paper, and we were led down a short trail to a yurt complex. This is where the assessment was to be conducted.
Okay, I guess this is totally fine - I don't need conventional! I just need someone experienced! Plus, I am all about the mountain life, so I just decided that we were lucky to have testing done in such a beautiful setting.
Then, speech pathologist A told speech pathologist B (woman with bag) that she would leave us to do her thing.
(uhhhh.....huh?)
Her 'thing' turned out to be 'The Assessment'.
(what???)
Well, I didn't expect this but then again, perhaps it would be all just fine. And she seemed very nice, anyway, so what was I worried about? Just chill out and stop talking fast, I told myself as I tried to give her the quick rundown on Bubbles' particular articulation deficits.
She put her toys on the floor, giving him immediate access to what I thought were to be used as tools in the testing. I had a brief 'what is she thinking?' moment, but took a deep breath and smiled. We would be fine. Bubbles quickly examined the meager assortment of toys and then started to put them back in her bag. He was done.
"Nnn wan paeee!" (don't want to play) He exclaimed, shaking his head vigorously and pulling me towards the door. "Wan go go now!" (these toys are stupid and I am leaving)
"HAHAHA!" I shouted, way too cheerfully, "WE ARE GOING TO PLAY!! PLAY AND HAVE FUN!! FUN FUN!!"
He looked at me dubiously (I swear he did) and said, "I. WAN. GO."
She said, "Hey Bubs! We're gonna have FUN! Come over here and play with me!"
He wasn't convinced but he gamely sat down, patting the floor next to him for me to join him, which I did.
She hauled out a very thick packet of paper which turned out to be The Test.
She said, "Okay, Bubbles! I am going to say a word and then I want you to repeat it after me.

(???)
(seriously)
(if you needed some explanation? Extremely and unnecessarily long instruction for a two year old being assessed for language deficits.)

I said, "I'm not sure he will be able to understand your instructions."
(BIG SMILE!)
She said, "Bubbles, I will say a word and then you say it after me."

(oh!)(simplified!)

Bubbles began to put her toys back in the bag again, as a not-so-subtle message to her that she could leave. Right away, please.

She vascilated between practiced happy tolerance and visible frustration as she continued to present a word to my son and ask him to 'repeat it after she said it'.
Bubbles attempted a few models and then again went for the door.
"I go go go."

"I think you need to simplify the instruction. Can you say the word and then tell him,'Your turn'?"
She tried saying the instruction this way and he started to comply without too much thought given to protest. Because he has been coached for months through ABA to respond to simple instructions.
After a few more repetitions, he again went to the door.
"I wan go go!"
She said, "We may not be able to get through this today if he can't follow instructions."
(WTF???)
I looked at the giant packet in front of her - the packet we were expected to complete with her - and said, "He's used to ABA -based speech therapy. He works well for motivators."
She replied, "Oh, I didn't bring anything with me."
I looked at the small pile of discarded toys in front of her.
"Let me run up to my car and see if I can find something to use - I have milk and that will help!"
I told Bubbles I would be right back, and he understandably began to protest being left there.
"Bubbles. I will go to the car and get milk. And a lollipop. Then I will come right back here and play with you."
He sat back down on the floor with this stranger and was compliant.
I wandered up to the car and spotted speech therapist A (the one with whom the appointment had been made) chatting on her deck with someone. I was still mighty confused about the whole scenario, and retrieved the milk and lollipop and a fruit leather from the car.
When I walked back down to the yurt, Bubbles was working well with speech therapist B so I hovered outside the screened door and waited for him to have another attention break.
He continued to comply with the testing and the wordy instructions; I was so proud of him as I watched. He is two! He was being so good for this person he didn't know, just for the sake of being good!
Eventually though, even his good nature wore thin and there was still a giant stack of papers to get through.
When I came back in, she said, "Well he definitely qualifies!"
I asked, "For Apraxia?" (really? this quickly into the test? wow!)
She raised her eyebrows, "I don't know that yet. He qualifies for services, though - he definitely has a delay."

::blink blink::
::repeat::

"Well we know that! He has been getting ABA-based speech therapy for nine months!"
At this point I realized she knew nothing about him. She hardly knew why she was there testing him; she thought it was to see if he qualified for any speech therapy at all, and was unsure why she was asked to perform the test for Apraxia on him.
She did, however, hear the 'ABA-based therapy', and after that I could tell she spent the next ten minutes trying to assess whether or not she thought he was on the spectrum.
Suddenly, the questions shifted.
"Is his eye contact usually better than this?"
"Why is he getting ABA instead of traditional methods?"

Once she was satisfied with my traditional 'yes he has already been assessed and yes we are pretty damn sure he is not autistic, and by the way, ABA doesn't always suggest autism' explanation, the testing resumed.

I broke out the milk, and would offer him one sip of milk for each word he would say, which was...painstaking. He isn't used to having me as his ECI/speech therapist/ABA instructor; and, while I practice regular ABA with him throughout the day, he could see this was a set-up. Speech therapist B (STB)would get visibly frustrated each time he (loudly) protested, but I held true to the principle and made him follow through to receive his motivator. The motivators were at first, the milk and lollipop (one lick at a time, though when he got sick of me taking it away from him and took a big chomp out of it, he was sternly chastised by STB because now that he had something in his mouth, she couldn't ask him to repeat a word. I confess, I suppressed a giggle.), but he soon tired of those, so we moved on to whatever else caught his interest in the room yurt.
The fan? Okay, after you have a turn (say two words) you can press the button on the fan.
The pillows? Okay, after you have a turn (say two more words), you may jump on the pillows.
The pile of yoga mats? Okay, after you have a turn (say two more words again!), you may knock over the pile of mats.

This went on and on - the pages kept turning, the questions kept coming, and my son continued to be allowed to bounce his way around the yurt in carefully measured doses and try to escape endure it.
In between his bursts around the room, STB asked me questions about his history and language development.
One of the questions went something like this, "Does Bubbles understand a two-part instruction?"
And I thought, 'Observation skills, much? OMG were you in the room with me for the past two hours when I was telling him that he would have to do A to get B?'
I did not say that out loud.
Another question asked if Bubbles could understand concepts and reasoning - I pointed out that he had stopped crying about me leaving him in the yurt (with a stranger) earlier when I told him I was going to the car and would be back with treats.

When I asked her a few questions, they went like this:
Q: "So, do you work with children much?"
A: "I work in a nursing home. I work with stroke-onset Apraxia victims."
Q: "Have you done many of these tests with the outcome of Apraxia?"
A: "I've never done this test on a child before!"

When I came out of my shock-induced coma, I thanked her for her (two hours! of) time and gathered up Bubbles, who by this time had charmed STB by showing her around the garden he had just discovered. He hugged her goodbye and said, "Enk-thu (thank-you)."
And we wound back down their mountain to recover from the ordeal and drive back up our mountain.


And because Squid is always good at making my brains think, I asked myself this at the end of the day:
Was it a bad experience because we were expecting someone more qualified and the assessment may have to be re-done and it was a rather painful two hours the first time around?
Or,
Was it a good experience because the ABA skills which I have been working so hard to learn and incorporate for Bubbles' ultimate progress proved to be resourceful and successful in getting Bubbles through a test which was not performed in a developmentally appropriate manner?





13 comments:

Alexander M Zoltai said...

I've only been following your blog for a short time so I'm deficient in knowledge of the history of your child.

Your account was powerfully written and kept me in my little place without any Wan Go...

Long blog posts are my litmus test--if I want to get through it, the person has won my heart (certainly not my brain or wallet...).

Sure hope you're compiling these posts for a book...

~ Alex from Our Evolution

wrongshoes said...

That sounds really painful. I hope you will be making a formal complaint.

Anonymous said...

It is amazing who these places will say are "qualified." Wait until the district starts throwing crap people at you. Be aware and make sure to reject any and all evals. like this and demand actual qualified people. Why do people like this waste a child's time? Please don't allow her to contribute to any recommendations for a future IEP. Can't imagine she would have a clue what he needed in terms of good goals and objectives.

Special Needs Mama said...

You are clearly a beautifully patient person, a well-versed strong advocate for your child. If it had been me, I would have been out of there in 20 mins. I echo the previous commenter and urge you to let your service coordinator know about this experience. Those evals cost a lot of money. I realize there is a dearth of good people, but do you really think STA and STB should be allowed to see and evaluate other children? Think of the mothers who aren't as on the ball as you! I'm adding this story to my collection of special needs nightmares, or things aware, loving and educated parents should not have to endure!

Debbie said...

Oh, for feck sake! That is so annoying. I'm not sure which of your conclusions is most accurate...perhaps a combination of both. I get so tired of assessments. The school just sent home yet another one of those skills tests for me to fill out. You know, the ones that say 'almost always, sometimes, almost never, never.' Vague crap like that that is confusing to answer because sometimes he almost never does 'x' behavior and other times he almost always does. Regardless of the experience, I hope the outcome is that you continue to get good services for that sweet, sweet little guy of yours!

Anonymous said...

De-lurking as a mom, speech-language pathologist now Early Childhood Developmentally delayed teacher to say "I am SO sorry you both endured that". It was painful to read. You should both be extremely proud of living through it.

Julie

DadaMama said...

Bravo to you for not losing your cool! I'm not sure I would have been so good.

Also, I am sending Bubbles a pony post-haste, because he was SO GOOD.

It's nice when all the hard work you've put in as a mom is evident, even if it takes a less-than-stellar speech therapist to show it off.

Jerri Ann said...

I personally (and from having a kid tested several years ago) think you deserve an award for tolerating that crap...sorry to be so yuk about it but geeeezz, experts, slexperts eberts, that was horrible.

Lunasea said...

Geez. That sounds like a bad experience that you coped with by using ABA tools. Thank goodness you're such a fantastic advocate for your kids.

It makes me crazy when EI wastes people's time. The programs have the potential to be so helpful when they're well coordinated.

I loved doing child assessments. But I would never do an assessment on a child if I didn't know exactly what the referral question was.

Tricia said...

What a colossal waste of time! And... a good experience in that it did show his progress.

I could just picture you waiting outside the door scoffing and shaking your head- proud of Bubbles and aghast at the therapist.

Good thing there wasn't another grown up to guffaw with around..or maybe that wasn't a good thing...huh?

Shelley B said...

Wow, I hope you didn't pay for that. I think I wrote to you before about my soon who is severly apraxic, but yeah, that would be painful. I can see them asking him to imitate, because a big indicator for apraxia is if they CAN imitate or will even attempt it, but she totally lost me after that. If you go to apraxia-kids.org you can probably locate a therapist in your area who is qualified. Good Luck!

For the Long Haul said...

Oh my god, as someone who has sat through many an assessment with my son, I would like share with you that we have never received care like what you just went through. I cannot even imagine your frustration. And I know the feeling of holding together said frustration because it might make your son get upset and then the entire purpose of the assessment becomes a waste. I live near you (Silicon Valley area) and have received pretty decent care around here for my son's speech delays. So sorry you had to go through this. The assessments are the worst part of it all. Just wanting to tell you that you did great and like others have said, I would definitely talk to someone about what transpired during your assessment. And yay for Bubbles. Sounds like he communicated very effectively. Give you both a hug from me.

Jim Whitehead said...

Hey Gwendomamasan!

Yah here I am in Italy in the gorgeous Appenines, in a great hotel room with a Jacuzzi bath tub --and hubby is sicker than a dog--fever and all that gastrointestinal yuck. Anyway, since its late and other amusement options were out--I was watching daily show re-run videos about Sarah Palin--but they and my raucus laughter were too noisy for him so I just started surfing (quitely)--I typed you in and saw this post.

Oh man! You were so looking forward to that assessment for some real verification. It stinks that you have to raise a rucus about it--well I know you can--but you just should not have to deal.

Hugs--hope I have not violated any blog post etiquette here--probably should have e-mailed you directly.
J