Shaken & Stirred

Let me be upfront in order to save you some time – this is not going to be about martinis.  I know – that’s probably deceitful of me in some way, so if you followed this link hoping for recipes, I can’t help you.  To be fair, I was attempting to both describe the crazy range of emotions we’ve experienced in these parts the last few weeks, as well as honor my kind and thoughtful first husband, Tom- giant James Bond fan and birthday guy later this week.  Who knows – he may decide to celebrate his birthday (which may I add is in a completely different and more advanced decade than mine) with an appletini – living on the edge and all . . .

Frankly, a low key, drama free week would be inviting, as it’s felt a bit crazy pants around here of late.  You know it’s bad when stress creeps into life and both Elliott and I are up at around 4 a.m. or so!  This is never a good start to any day – thankfully Elliott knows how to make a robust cup of coffee, and kindly helps me out most mornings.  This is also likely why the red couch has remained so quiet despite a bevy of craziness.  My ability to even form a sentence has been compromised.

Suffice it to say this gets confusing for me to timeline because there is much overlap of good and ugly, so let’s just go for it, shall we?

A few weeks ago E was nominated for a kid community/volunteer award by an amazing and caring person named Jessica who happened to serve on the “Light it up Blue” committee with him last spring.  She thought he was kind of a fun guy who was doing his best to give back in his community in his own way which was pretty terrific of her to notice.  About a week later, a local television station reached out and asked if E would participate in an interview.  E agreed, kind of passionate about said station, and they shared with us that one of the morning anchors would be doing the story.  Soon thereafter, we began corresponding about where/when, etc., and they asked if they could conduct the interview at school.

Pause – this is where things get icky/confusing, and whether fairly or unfairly, felt to us like E’s team didn’t seem to care or want to deal with a special education student receiving a community service award.  Long story short, school said no, and the interview happened at our house.  Most importantly, this has a happy ending.  We met an kind and caring tv anchor and camera guy who were amazing, all 3 siblings got to interact in the interview, and we have some great new friends who made this experience fun and special for E and for our family.  The end result was a lovely story that honored the very best of E despite his nerves getting the best of him initially during the Q&A and that is so cool.  E has been watching it every other day or so, and smiles with joy when he sees himself having fun on the tv screen.  It’s very sweet to see him be a bit proud and a bit shy all wrapped up together.  It’s an experience I believe he will cherish for the long haul.

E attends a special education program, and without a doubt it would definitely have created some unique obstacles to film the interview there and follow privacy guidelines, Hippa regulations, etc., and we really get that.  But it wasn’t so much that they said no as much as it was how – it felt abrupt and dismissive, and it stung.  E was in tears, which just tore me in half, and then I started to consider if it had been at any other school or not been a kiddo with special needs, would this have happened as it did?  I really believe most schools would be proud to have a student honored to be receiving a community service award.  I mean that’s a good thing, right?  If a student is doing something positive, it sort of shines a positive light on school as well.  It just seems like an all-around good thing, and maybe that’s why it surprised me when things went down as they did.

If this had been Henry or Ada, I truly can’t imagine their schools saying “we’re going to pass”.  The hardest part was that it hurt E, and something that should have been an amazing thing for him suddenly took an ugly turn.  Had they shared with us that this was going to present a lot of unique obstacles but that they would do their best to work around them, it would have made all the difference, but that’s not what happened.  Maybe it hurt even more because he was days from turning 15, and struggling with accepting how his autism affects him as well as self-esteem challenges after what can only be described as a year of extreme academic ugliness.

In the end, we learned a lot.  We have amazing and caring neighbors who voiced their concerns, and friends who went to bat for E in a host of ways and ensured that this was an amazing honor for him (complete with cake) and inviting him to attend yet another committee meeting (his fav!).  It really made all the difference, and made E feel valued, which was awesome – and for that, our gratitude runs deep.

Plus, despite the fact that I’m already that crazy mom who sends too many long-winded emails to school every week, I suddenly was communicating with school on a whole new level – heck, my new educational administrative friends have witnessed the ugly cry by phone and in-person all in the span of a week!  Now I’m betting that both E & I have been the cause of more than one staff happy hour – of which I’m fully supportive of for the record!

I’m all about forging strong and open back and forth communication with the educational teams the trio gets to work with.  With 2 kids on the autism spectrum, and the middle guy with ADHD, Tom and I realized long-ago that we need to get along well with our fellow village members in order to make this work at all!  I try hard to remember, even during trying times, that while Tom and I were drafted into the world of autism/special ed., these fine people chose their path – and likely didn’t do so in hopes of becoming wealthy.  It’s a valuable lesson to keep in mind during hard times.

Despite some icky interactions when E was first diagnosed with some early childhood special ed. staff members (I was an emotional wreck mama bear without Prozac – it was decidedly unattractive), I’ve worked hard to build partnerships and relationships with the educators who have helped our kids – in public and private settings.  This has been a tremendous help to us as we work to interweave the different segments of life together for the trio (home, school, community, therapeutic, recreational, etc.)  I’m really proud of this, because it has truly made a huge difference and gotten us through some challenging times with creative and collaborative problem solving.

Over the summer, we lost some terrific educators who had been in E’s corner for the long haul.  They moved on to different positions and even though it was hard to say goodbye, we were truly happy and supportive of them as they forged ahead on their own paths.  Still, it felt a bit lonely starting over, as relationship building takes time, and this suddenly put us in complete start over mode just weeks before the new school year started.

Now, at the same time this whole interview shindig was going on, we were alarmed when E quite suddenly didn’t want to go to school for fear of being hurt.  Despite the fact that I am more an over-communicator than an under-communicator with school, it felt like it took effort to get clarity about what was transpiring – and it wasn’t good.  While I’m doing my best here to respect boundaries and privacy as best I can while sharing from our view, what I will say is that E definitely had some ownership in this dynamic stemming from socially inappropriate language that I wish had been conveyed to us long before it was.  I really believe things might have been remedied had we been clued in more specifically. Maybe it wouldn’t have made a difference, as it’s easy to speculate looking back from here, but I know we would have done our best to try.

All this led to several new changes for E, and an abrupt IEP meeting, which was surprising but far from what stung the most. That has nothing to do with minutes and everything to do with trust.

At the end of the day, I rely on gut instinct when it comes to making the big deal decisions for and with our kids – I call it my “autism mom gut” and dorky or not it’s served me well over the years.  I kind of despise IEP speak even while realizing the necessity of it – it’s just not my personal style and I own that.    I’m just never going to be that mom pointing to the IEP and insisting on two 10 minute sensory breaks a day, etc.  Instead, I need to believe with every fiber of my being that an educational team is going to give sensory breaks when needed because it’s the right thing to do and not because an IEP is dictating them once in the morning and once in the afternoon.

But my lack of IEP love burned me this time, and in too many ways and for too many days, E didn’t get the best of what his team has to offer.  It hurts to even say it out loud, but our trust has been compromised, and it’s not going to be an easy fix.

All this has been really hard to be carrying around of late.  I’m glad to be rid of it, and most of all, glad to have been honest and upfront with E’s school team.  I appreciate that they owned what they could, and even if my emotional breakdown was ugly, they allowed me to feel heard, and that matters.  A lot.

Do we believe any of what transpired was intentional?  Of course not – and while I’ve only shared this side of things, my best guess is that it was all a combination of little things that contributed to a bit of a mess.  But even without intent, it hurt, and it’s going to take some time to find a way to rebuild trust and forge ahead to give E the best of what we’ve got so he can give life the best of what he’s got.

Gratefully, E is not afraid of hard work, and neither are we.  Ok, he may complain about it more outwardly than most, but no matter what, we’ll just keep putting one foot in front of the other – preferably with a side of “Journey” for good measure.  Time to forge ahead . . .