Shapes of things before my eyes
Just teach me to despise
Will time make men more wise?
Here within my lonely frame
My eyes just heard my brain
But will it seem the same?
As I write this I’m listening to Noah work with his tutor in the next room.
I should mention that it’s 1:30. On a Tuesday.
For the past month, Noah has come home each day after lunch/recess, missing the last two hours of the school day. Instead, he works with a team of two tutors who take turns coming to the house from Monday through Friday.
The road to this unconventional place has been a bumpy one – filled with lots of tumult and tears, but also much progress. And though I never would have set out to have things be the way they are right now, I realize that they are exactly the way they should be. Right now.
I’ve received such kindness over the last year – much of it coming from total strangers – regarding our sweet boy. His condition is such a moving target that it’s hard to figure out the ‘best time’ to share, but this seemed like the right time, especially since it’s been about six months since my last post.
Spring and summer were intense. Noah went on two additional meds to address the persistent aggression and dysregulation he was experiencing. Two heavy-duty meds, I should mention. And – like all the meds we had been trying over the last year – they worked somewhat. But not completely. Fortunately we returned Noah to the same day camp, with the same amazing director, who took Noah in with open arms and worked with us to give Noah a wonderful summer.
And things were definitely better than the year before. By August he was completely off the steroids (and the anti-depressant that went with it), and the violence and aggression that we had been experiencing for over a year had decreased dramatically. He appeared to be staying in remission too, which we were so anxious about, especially as we were taking him off the steroids that got him there.
But he still was nowhere near where we wanted him to be. Too much inconsistency. Too much unpredictability. I lived with my phone literally attached to my side, knowing that it could ring at any moment – and my stomach lurching every time it did. We lived for the weekends at the beach, with a steady parade of friends who came to hang, eat great food and play in the ocean with us. And we were so grateful for those times. And those friends. Noah returned for another week of surf camp, and the difference in his skills and overall attitude compared to last year was astounding.
Soon I hope that I will find
Thoughts deep within my mind
That won’t displace my kind
But as summer wound down and first grade loomed (looking a lot more like second or even third grade, from what I recalled), Mike and I began worrying in earnest. We had our first “steroid-free” EEG approaching. This was a big one as it would tell us definitively if Noah was still in remission. And we were still not out of the woods behaviorally, leaving us to wonder how was Noah going to manage the stressors of a large class, long day, bigger/more demanding workload.
We began working with a brilliant psychologist, who – in counsel with a psychiatrist – strongly recommended taking Noah off ALL his medications (except for his seizure med). That it would be the only way to get a true baseline of what this kid was like – for better or worse. As we had always been uncomfortable (to put it mildly) with the amount – and intensity – of meds Noah was on, we consulted with our neurologist and went ahead with this plan.
And then a new nightmare began – one of watching our child experience the effects of withdrawal. His behavior at school got even worse, and both his fine and gross motor skills declined. It was horrible – but there was nothing we could do but bear down and wait. There were moments when we said screw it, let’s go back on (fill-in-the-blank med). But we were advised not to, and in the end I’m glad we listened. There was just no shortcut through or around this. We hung in.
But we soon realized that we needed to make a decision about school – and quickly. Even on days that I wasn’t getting a call to pick him up, it was clear that his time there was not productive. And as crazy as it sounds, given that he’s only in first grade, we feared that he would eventually fall too far behind to catch up. He already had a significant gap due to the years of his undiagnosed condition, and the pace of school was outrunning his ability to keep up. Everyone said he was super smart and capable, but the demands of the classroom – coupled with his sizable gap and emotional dysregulation – were just too much. Right now.
Our psychologist connected us with an educational consultant, who – after much conversation and observation – suggested that we either put Noah into a therapeutic school OR shorten his day at this school, supplementing with tutoring in the afternoons.
We chose the latter, for several reasons. We know that at some point we may have to switch schools. But while he’s still in the throes of all these meds leaving his system, we don’t even know what kind of school we’d be looking for. And given what a big decision this would be (likely requiring us to move), we want to at least be certain going in that we have as clear an idea as possible of where Noah is at. And since the goal – for now – is to keep him in his current school, re-entry will be that much easier if he’s attending every day. Finally, 1:1 tutoring is the very best way to help Noah catch up academically, and we now have two skilled individuals spending close time with him – and helping us assess where his strengths and weaknesses lie.
So that’s where we’re at. Right now.
Noah’s EEG in September was stellar – meaning that (so far, and hopefully for good) he has been able to stay in remission off the steroids. He goes off to school each morning, and (assuming he does not have an outburst) stays through lunch and recess. He sees his tutor in the afternoon, and we go off to one of our daily extra-curricular activities.
Six weeks in we are starting to see a picture emerge. And we are amazed at what Noah has been able to do – unmedicated, and unencumbered by ESES. He is so, so smart. He is improving each week in his activities – whether it’s skateboarding, tennis, soccer or swim. He no longer has an outburst every day, and even better? There are many many times when he starts to get angry and is able to “turn it around”.
But there is still so much work to be done. He is still inconsistent and unpredictable. I still get a call at least once a week to pick him up before his scheduled time. And we still don’t know if meds are in his future, or if a switch to another school will be best.
So the two most “rainy day” people you could ever meet have learned to live life one day at a time – not looking beyond that day, because there’s no point in doing so. We are grateful for each other, and for a marriage that – thank god – has only gotten stronger through this ordeal. We do our best to have lots of fun, and are so thankful for good friends who make that possible (in particular my parents, who are THE BEST). We scratch our heads over the people who have bailed – and then put them behind us. And we’re grateful that our jobs and circumstances allow us to be as flexible as need be – to give Noah the best shot at “sky’s the limit” as he deserves.
And I continue to throw myself into my two “big” kids, my work and my home – all of which help immeasurably to keep me focused, get me out of bed, and fill my time (and head) constructively.
Most importantly, when I turn out the lights at night, I take a minute to count three things that I am thankful for. I’ll admit I do this more often on the “bad days” than the good ones, as the need to see that silver lining is greater on those days.
But here’s the thing – there are always more than three.
Come tomorrow, will I be older?
Come tomorrow, may be a soldier
Come tomorrow, may I be bolder than today?
Now the trees are almost green
But will they still be seen
When time and tide have been?
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And here, for my other posts on our journey with epilepsy: