I’m pretty sure every evaluation in my son's file dating back to 2001 notes that “the full assessment tool could not be completed in its entirety.” These standardized assessments are not designed for kids like mine.
In order to get the services he needs, though, they are a necessary evil.
We are lucky to live in a state that provides, through Medicaid, a fairly good range of home and community based services for people with developmental disabilities. This allows my son to access therapies outside of school, which have been a weekly part of his life since he was 3 years old.
But most of his therapies have been on hold for awhile now. I cancelled his home speech and OT sessions over a year and a half ago, due to safety concerns for everyone involved.
Since that explosive wave of adolescent stress has settled a bit, I decided it’s time to try again. I found a new clinic, thinking that a change in setting might help reset his expectations and interest for these sessions. Finding providers who “get” my kid is not easy, but I’ve got to start somewhere, and this clinic has openings for both speech and OT.
First, he had to get updated assessments done.
Leading up to the evaluation appointment, I worried exclusively about getting him to and through the appointment without any major incidents. It didn’t even occur to me to be concerned about what the evaluations would reveal. He’s been camped out on the same plateau for a long time. I already know what the results will be.
On the intake forms, I explained the basics: For Speech, he communicates with single words and short phrases, and he understands much more than he can say. For OT, he’s got a lot of basic skills, but needs prompting to complete activities, requires assistance with certain daily living tasks plus support in handling those pesky sensory issues.
But the evaluation process, which utilizes in part those standardized testing instruments—where they can only ask the questions a certain way, and use only limited prompting or modeling to show what they need him to do—revealed the cracks in my optimism about all the things he can do and understand.
My assessment of his abilities (his strong receptive language and moderate motor skills for example) are based on him operating within an environment in which people adapt to his way of communicating and interacting. Those who know him can interpret his gestures and limited language and anticipate his patterns, dislikes and needs. Take those supports away, and try to measure him compared to his “same-age” peers, and he will struggle. His brain just does not work in the same way.
It’s been years since I’ve watched him try to complete a standard assessment. I’m not allowed to help or modify the instructions, I mostly have to sit there and watch the therapists ask my kid questions that he doesn’t quite understand, questions that he knows he doesn’t understand, and then step in to explain why he’s starting to get irritated.
He did really well considering how frustrating that process is.
With the speech therapist, he had difficulty responding correctly to two-part directions and to questions that asked him to differentiate using descriptors ("touch the black fish and then the small house” or “touch the car between the red houses"). But I also saw that he did understand that he wasn’t getting it (regardless of how many times she said "good job”), and his frustration level started to go up.
Yes, his receptive language is fairly strong, but novel instructions are tricky. He needs visual and physical models to connect the words you are saying to the actions that are needed. Of course, in a “standard” test, the facilitator (and the mom) are not allowed to assist.
I hate these tests, too, kid.
I don’t blame the therapist for trying to see what he could answer without support, they're required to a certain extent to do that. Plus, she doesn't know him yet, and my comments on the intake report never tell the whole story. She did move beyond the table test pretty quickly, giving him a chance to explore their “gym” of crash pads and swings, while she gathered enough information from him and me to complete her report.
In the OT session, he was asked to copy shapes, complete mazes, cut/fold paper, and use pincer grasp to pick up small coins and knobs. Writing and drawing are difficult for him (hence the need for OT services), and I believe part of his frustration is the strength of his visual memory. He can see that the shape he’s drawing does not exactly match what he was asked to copy and it drives his perfectionist brain crazy.
The OT asked him to do a few tasks with a pencil (making a key accommodation for him by sitting on the floor with him when he wouldn't sit at the table), and then moved on to “manipulatives.” For one test, he was asked to pick up a penny between thumb and forefinger, transfer it to the other hand, and place the penny in a bowl. Repeatedly. She wanted to see how many pennies he could move in a timed test, but speed is never a concern for this boy. He did a few, then tired of the game and stopped.
She reset the test and asked him to try again. After 2 or 3 pennies transferred “correctly,” he started picking up handfuls of pennies to put in the bowl. You want all the pennies in the bowl, lady? Here, there’s an easier, quicker way to do that.
Hey, that’s good problem solving, right?
Of course, we reached the end of his patience before the end of the formal evaluation tool, but I think she got the gist.
Overall, the evaluations reaffirmed that he could benefit from these therapies to build his skills. That’s no surprise.
But the fact that the “full assessment tools could not be completed” reveals, yet again, the importance of the modifications and supports he needs in his daily life to learn, understand, and communicate. And how critical it is to keep advocating for those adaptations so that he can be as independent as possible.
I’m very proud of him for getting through those evaluations. He really tried, despite not understanding everything being asked of him.
Now his job will be to teach his new providers the best ways to interact with him and adapt their lessons to meet his needs.
Hopefully, with a little support and guidance, these new therapists will pass his test.
