Tomorrow, for the 4th time in his life, my son will go and sit in a room with a psychologist who will spend two hours, more or less, asking him questions designed to understand how his mind works. This is fairly impressive for someone who is only 7 years old, and to me says an enormous amount about how far our understanding of the challenges faced by many children has come in the last 6 decades. In the 1950s and earlier, the prescription for a child with CJ's issues would often be a good whipping and "better" parenting, because, really, kids only have issues when their parents aren't doing their jobs, right? Yet another reason to be happy that I'm parenting and teaching now, when kids and parents aren't simply labeled "bad" and set to the side to be ignored, but instead are brought further into the fold to help find out what is happening and how they can be supported.
Our story is also a great example of how identification is more a journey than a single event. CJ was first evaluated at 2, when Craig and I were desperate for someone to help us parent our child more effectively. We knew there was something going on with him, but couldn't sort out exactly what. At the time, we didn't get a diagnosis as much as a series of suggestions for how to structure his world and ours to minimize conflict. They worked well and we chugged along for another 2 years, making sure we transitioned slowly and with lots of notice, following a schedule that centered around meal times (just easier to work from there outward) and putting in place routines to help us accomplish every day activities more easily.
That is where things stood until CJ started in a regular school setting. Halfway through Pre-K 4, it was apparent that his peer interactions left a great deal to be desired and we found ourselves in evaluation mode again. This time we did get a diagnosis of a Non-Verbal Learning Disorder (NVLD) with an ADHD Rule Out and, most importantly, an IEP. For the next two years, we invested a lot of time and money into helping him improve. We paid for an occupational therapist, a behaviorist, and a therapist out of pocket. His kindergarten teachers were a godsend, providing a safe place for him to learn how to exist in a classroom, and he thrived. First grade was a bit rougher and we started 2nd grade in a new town and a new school, not at all sure where we stood.
In the transfer to VA, it was decided to go ahead and retest him since he was almost due for a new round of tests. The school did a great job on his 3rd go round. There was still a gap in his IQ scores but both were high enough that a NVLD label was no longer an option and so we moved to a straight ADHD diagnosis. His new school, and especially his teacher, have been amazing this year. Without all the extra strain that comes with school in the inner city, they have been able to focus on helping CJ thrive. There is an aide in the class who works with him one-on-one part of the day and she and his teacher both have a great relationship with him. He was still struggling, however, so we made the hard decision to try ADHD medication just before spring break.
We are lucky that the medication starting helping almost immediately. We upped the dosage once and that was it. His teacher and the aide both gushed about the incredible changes they were seeing in the classroom and it felt for a moment that we had solved the riddle and everything would be clear sailing from here on out. Unfortunately, those changes weren't carrying over to his life outside the classroom and his peer interactions remained problematic to say the least. It appears that some of the issues we'd always thought were ADHD-related weren't and that left us once again trying to figure out what was going in that oh-so-smart little mind of his. This is not uncommon and is actually another great benefit to having put him on medication, since we would otherwise never have realized we might be missing something. Which brings us to tomorrow, when he will again sit in a room while someone asks him a lot of questions. I admit I hope that this will be the end of the evaluation process and that we will walk away with concrete information on what other challenges we might be facing. I do know that, if it's not the end, we'll simply gear up for Round 5, because I will not stop until we completely understand my little guy and what he needs.
Before we met with the clinical psychologist last week, I sent over all of the paperwork on CJ's last round of tests, along with his IEP and some other items. She was pretty blown away at all that we'd managed to get done for someone so young. Usually, she said, kids his age show up in her office at the very beginning of the process we have been embarked on for a very long time. "You should be proud of yourselves and all that you've accomplished," she told us, "give yourselves credit for all the answers you've found." And we do, of course, but as any parent will tell you, the satisfaction here is not in the effort but the result. I could spend the next five years working non-stop to help CJ and if, at the end of that time, he is not successfully integrated into his class, I will not congratulate myself on all I've done but will, rather, spend my time trying to figure out what I did wrong and how to fix it.
I know that I'm not a bad parent, that's not my worry. No, what keeps me awake at night is whether I can be a good enough parent to make sure that my son doesn't go through life not understanding why he struggles with things that other kids find easy. Put simply, I will be done when he is happy far more often than he is sad.
Anything less is unacceptable.
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