Honestly, navigating my kids’ special education world has proved to be as much about finding my way as it is about educating my kids, and – wooeee! – I was totally unprepared for that at the beginning of this gig!
In the early years of stumbling through the special needs dark, which I like to call the Befuddlement Time (or, the What The Hell time), I thought I was searching for the One True Path. Kind of like the Path of Righteousness or the Path of Eternal Security. Except, in this case, I was hoping to find the Path of Special Needs Success.
And, really, is that too much to ask? That my city planners pave some kind of wide, well-lit trail, line it with chocolate and parenting manuals, and then issue me a sweet, bespectacled case worker to hold my hand and show me the sights?
Instead, I found myself at the beginning knee-deep in the underbrush of a special education jungle, turned around and rather hopelessly lost. I felt alone and confused, and I was saddled with an enormous backpack weighted with equal parts grief and self-pity. How is it possible that my baby isn’t developing on schedule? I asked myself. Why can’t my son tell me what he wants? How come my kid gags when I get too close to him? And what if we’re stuck here, deep in this jungle forever and ever and ever?
It was exactly the opposite of rad.
And it was just like parenting teeny, tiny children in that people said perpetually, “It will get better. Someday. You’ll see.” I waited for it to get better, but it didn’t, and so I doubted.
But then, after a very long time, which I shall call Millenia, but which was probably only Years, it did get better. And better. And better. Ever so slowly. Almost imperceptibly. Until one day I looked around and said, “Heeeeey. This is sort of better.”
Now, thanks to Hindsight, I can see that Better Happens. (Although Hindsight is also a punk because he totally withholds his sight when it matters. I would appreciate Hindsight more if he was Foresight or InTheMiddleOfTheMessSight. But I suppose he’s got to be true to himself, so Hindsight is what I have.)
Now I know that somewhere along the way, teachers and friends shoved tools into my hands and, more importantly, into my foggy, murky brain. Thanks to the Colleens, Nicoles, Cindys and Marys of the world, I figured out that it was my job as a mama to pick up my advocacy machete and start clearing trails side-by-side with my kids’ teachers and their practiced blades.
I learned how to be the squeaky wheel without driving educators straight into the nearest bottle of tequila. I learned to keep taking my kid to the dressing room to try on program after program ’til one fit without chafing… and then I learned how to back off and let those teachers and programs work without lobbing mama-interference balls all over their court.
In other words, there was a lot of learning. And learning is sweaty, dirty, hard work. Some days, I’m glad I get to do it. Other days, I’m just tired and achy and hungry, and I’d gladly trade my machete for a hot bath and 15 minutes of rest. (Teachers? Can I get a what what?)
If you’re the parent of a school-aged child in the U.S. of A. and you’re not familiar with Individualized Education Programs (I.E.P.) for special needs kids, you are missing out. Miss-missing out. Miss-missity-missing out.
(Psst… you are not missing out, but thank you for letting me pretend that you are. It’s really very kind of you, and it helps me get through the day.)
I’m the mama of one boy child with Communication Disorder and one girl child with the same, so I know my way around an I.E.P meeting, and I get to carve out my kids’ jungle annually with the help of incredible teachers, specialists, and administrators.
An I.E.P meeting, by its very nature, is full of uncertainties. For me, the mama, it’s a vulnerable thing, opening my pack in public. I’m never entirely sure what part is going to fall out. And it’s risky, exposing my love, my grief, and my fears, and then entrusting my heart – my baby – to others.
As for the teachers, if the parents aren’t careful, I imagine those jungle meetings can feel like Judgement Day.
So today, just in case you’re mired in a special needs jungle of your own, I’m going to share my top tip.
You know what helps with all of the uncertainties, all of the trust issues, all of the tension and grief and opportunities for misunderstanding?
It’s snacks, you guys.
Partially delicious, completely ridiculous, store-bought, imperfect, inexpensive snacks emblazoned with hopeful words like “Happy I.E.P.!”
Snacks like cake…
…which I brought last year to Ian’s I.E.P. meeting.
And snacks like circus animal crackers…
…which I brought last week to Ian’s I.E.P. meeting because “circus” and “animals” seemed spot-on for the meeting where we discussed Ian’s move from elementary to middle school. (Heh heh.)
I am 8 years into navigating this special needs world – a world I never imagined would be mine – and I will tell you, snacks are my very best jungle-navigation tip. If I could wrestle a hot bath and 15 minutes of rest into the classroom, I’d bring that to the I.E.P. meeting, instead (seriously – hot tub I.E.P. meeting, anyone?), but short of that option, I suggest snacks.
There’s something magical that happens when people break bread together… when we muscle our way into a clearing after a hard year’s work, build up the campfire hot and bright, reminisce about how far we’ve come, and, munching away, map out where we think we’re headed next. It doesn’t make the jungle less hard – not really. But it does make it more friendly and, frankly, more fun.
Happy I.E.P. Day, y’all!
May you find your jungle (special needs, loads of kids, or another type of jungle entirely) as bold and as beautiful – as friendly and as fun – as I find mine.
And may you discover a hot bath smack dab in the middle of it.