Testing, testing ...

The process of finding someone to perform a neuropsychological evaluation, go through the testing, get the reports, and then work with your child’s school is time consuming and overwhelming. I think we got the name of the place to get the evaluation from Wilson’s doctor. I remember him saying it could be too early to do the testing. He thought if something was developmental, we might not get a complete or accurate picture of what was going on… yet.

Neuropsychological evaluations are also expensive. Many people don’t get them because of the cost. Ours was not covered by insurance. I have read that some are, but I am not sure how that happens. I guess it depends on your plan (?). When they asked the questions about Wilson’s birth during the intake, we got the impression that if he were dropped on his head, his issues would be physical and then covered under insurance. I think it’s a small commentary on mental health; physical issues are easier to understand.

I remember the intake meeting taking a while. We had filled out some kind of screening beforehand and had Wilson’s first-grade teacher do so as well. They also had a call with his second-grade teacher. When we met, they asked just about every question possible, including how he was born, when he walked, how he behaved, etc. I don’t know what else, but it seemed like they wanted to know everything. It was exhausting for me but not as bad as the testing would be for Wilson.

My child, who would not sit still for five minutes to do homework, had to spend a whole day in testing. He did not go very willingly, from what I remember, and the evaluator did not have a lot of patience for it. Kindergarten and first grade included a lot of chair slamming and stomping when transitioning from one activity to another. (Wilson’s first-grade teacher and I laughed about it many years later). I do remember taking him to lunch in the middle of the testing. He did not want to go back. It’s hard to convince someone who’s that frustrated that we’re doing this to help him.

I am sure the process was not fun for the evaluator either. Sitting with Wilson to do homework was painful. I often said I would rather stab my eyes out with a pencil than sit with Wilson and do homework. We tried a lot of different things to try to motivate him - money for short-term rewards, tickets to accumulate to pick out activities, or things for long-term rewards - anything we tried wouldn’t work a second time. I eventually found out that it was time; Wilson wanted control over how he spent his time. So, some nights after one worksheet, I would chase him around the house for a five-minute break before we did more work.

The next part was worse than the intake, which seemed impossible. I sat in the office two months after the testing, listening to the results. It is very overwhelming to have someone tell you everything that’s wrong with your child. And there are so many tests with different levels that it’s hard to understand what’s good, normal, or bad. It’s a lot of information. Then you have to figure out what’s next, which results are fixable, and which are just how they are. I was very lucky to have a friend help me interpret the neuropsych report – which tests really meant what, which numbers to worry about, and what I should ask for when we got to the IEP.

Wilson met the criteria for the diagnosis of reading disorder and Attention-Deficit/Hyperactivity Disorder, Combined type. His weakness in reading was labeled “consistent with dyslexia,” including issues with phonological awareness, rapid naming, decoding, and word reading. They also had concerns about executive function, the skills that provide the ability to plan ahead and meet goals, display self-control, follow multiple-step directions even when interrupted, and stay focused despite distractions.

At the time, no one really diagnosed people with dyslexia, even though that’s what it was. I would like to thank the Decoding Dyslexia organization for their work in getting “dyslexia” used in evaluations. You can better understand and support something if you call it what it is.

Wilson started second grade while we were waiting for the testing and results. Just as in first grade, we had a very supportive teacher who wanted to do what was best for her students. Wilson quickly went from Title 1 support to a more specific reading group with the reading specialist. Progress! We also moved the parent-teacher conference in order to add the reading specialist to the meeting. They observed the same things we had and were eager to see the testing results to provide Wilson with better support.

Wilson completed the testing throughout January, and we met with the IST again in February. He would be getting additional reading support and some accommodations each day. We finally had the IEP approved in March. It was the beginning of MCAS testing, and the MSN (moderate special needs) teachers were busy proxying the tests, so there was another delay. Most of second grade was spent chipping away at the process, hoping this would restore my sweet, confident boy. I was optimistic we would hit the ground running in third grade

In November we met with the whole IST (Instructional Support Team), which included the psychologist, the head of special education, the reading specialist, the Title One person, and Wilson’s teacher. They went through the neuropsych report and mostly agreed with most of it as it was consistent with what they had seen with Wilson. However, they wanted to do some of their own testing to determine the exact level of services he would need. So, it would take even longer to get support, and Wilson would be subjected to more testing.