Tuesday, June 3, 2014
A Princess and A Diagnosis: The Day I Started to Learn about ADHD
Yesterday was one of the few weekdays when Paul didn't have his bar prep class and so I crammed it full of doctors appointments that I needed to get out of the way, but where an extra pair of hands wrangling babies would be incredibly helpful.
Appointment #3 was right after lunch and I'd almost canceled it a half dozen times. Every time I thought of the appointment the first thought that would come to mind was that I didn't care what the results said, they didn't really matter to me anymore, although once, not all that long ago, I'd cared enough to go through the long slogging referral process and actually set up not one, but three appointments.
I'd actually called and cancelled this particular appointment once, sighting the fact that I had no free mornings until the second week in August. I was told that the doctor only worked in the mornings, but when I said, "Okay, so can you schedule for the second week in August?" they found a way to squeeze us in.
The appointment was for Sadie. A long time back, after Mae got her diagnosis, I'd started to worry about her, because many of the questions that they asked me about Mae applied more to her than to her little sister. She is a flurry of constant movement, her hands flutter constantly, she can hardly contain the energy that radiates from her tiny form every second of the day.
The first results that came back were the blood test. She is allergic to wheat, cats, dogs and most pollen and grasses. Wheat was the only shock.
The next test was with a speech pathologist and with the doctor who tested Mae for both ASD and who tests her for her cognitive progress each year. The results came back quickly. They definitely didn't think Sadie was on the spectrum. Her ADOS test was basically a fantastic fairy tale. When they dumped the toys out in front of her she picked up a teeny tiny book and proceeded to launch into a ten minute story with dragons and princesses and fantastic adventures.
At the first appointment we were first introduced to an idea that had never occurred to me before. You see, Sadie didn't talk until she was three. She still has a slight delay, although it's been steadily improving and the doctors so far have seemed to agree that at this point it's correcting itself and that she doesn't seem to need speech therapy (I've seen a lot of improvement since we do so much poetry in her classes).
This time, however, the counselor tied in her constant ear infections during the first 18 months of her life (I'd say she had about 18) with the fact that she hadn't spoken until much later. He thought that it was very probable that she hadn't been able to hear well at all during that period of time and that that would explain the delay. In other words, the infections pretty much ended when she hit 18 months and 18 months later she started talking... which was likely 18 months after she really started hearing.
A few days later I went in for Mae's OT eval and as I filled out the auditory processing section, checking no to pretty much every question (it's the one area Mae tests as solidly normal in) I realized I could check yes to every single question for her big sister in that one category. And that's when I started to notice how often sounds hurt her ears (she used to sob in Mass uncontrollably every time everyone clapped, which at our old parish was every single Mass). She still complained of sounds hurting almost every day, while be simultaneously too loud when she spoke almost all of the time.
She went in for the testing and I found myself annoyed as I found out that there wasn't a sensory section at all (the one test I'd requested was the only one no one ordered apparently). It was all "math and letters and stories."
I wasn't worried about that. I do school her everyday. I know where she is with all of those.
He began to go through a giant packet of papers. She scored extremely high in some areas. Her math scores were grade levels above what was expected for her age. The other scores were solidly in her age range with the exception of reading, which was just slightly below (all things I pretty much knew, although it was kind of neat to hear that I wasn't just being a proud mama about the progress she'd made in math and how well she does in it). I explained that reading was stressing her out so much last year that we'd actually taken a break for about six months and now were picking it back up with much more success (last night she just started reading every word in her lesson for the day easily).
But he had a diagnosis. She definitely is not on the spectrum, he explained. But she does also very definitely have ADHD. He talked about worries and options. I explained that at this point I wasn't really too worried. After we started reading social stories and really buckling down to start first grade most of my worried evaporated.
And we discussed how it is likely that there's a sensory delay, since she doesn't really slow down long enough for her sense to process things, which can result in a sort of neurological immaturity. And the fluttering is likely simply the burning off of that constant stream of energy coursing through her little body.
So we have no plans for medication or really anything at this point. It does make me especially grateful that we're homeschooling because I do think that it would be more of a problem in a classroom setting, whereas one on one works perfectly (I think that will be less and less necessary as her reading picks up more and more since she can sit for hours looking at books as it is).
I'd still love to see sensory tests for her, just to give me ideas where she is (and what activities would help), because it does seem pretty clear that she has Sensory Processing Disorder, especially in auditory processing... but for now that can wait. The only place that I've found that would test her so far is the university and they don't accept any insurance and the test is pricey. She's such a combination of seeking and avoiding that it's not nearly as straight forward as it seemed with Mae.
At the moment though, I feel like we're on the right track and have been for a while. Equal parts running around outside and structure in our mornings seem to be the perfect fit at the moment... and if anything I can always add more running around outside to the mix.
Although now my curiosity about ADHD is piqued and I imagine that ADHD, along with autism, SPD and allergies will become my new favorite subject to read up on. What a learning year this has been!
In a way it's funny... because as with autism and Mae, as I watched Sadie following the appointment, I found myself more and more amazed with the person that she's growing into and the self control that she has developed and frustrations she's overcome these last few months on her own.
And that is exactly why I am grateful that I went to that appointment. This diagnosis really doesn't change anything. But I've found that knowing that there is an actual challenge there that she's struggling with has helped my imperfect patience stretch further and further. It isn't an excuse for behavior that's any different from what has already been expected, but it does make it easier for me to take a deep breath and not grow frustrated when those moments arrive and expectations have to be explained an extra half dozen times before they start to sink in!