Every year, I tend to ignore the month of September – just kind of pretend it does not happen, and go through the motions until it’s time to flip the calendar and see which family photo will appear in honor of October. Don’t get me wrong – it’s not personal. I recognize that September has many positive qualities – warm sunny days and crisp evenings, apple picking, Pumpkin Spice lattes, those beautiful orange school buses out and about once again, and a new season of “48 Hours” so Henry can once again ask me “Mom, why is it always the husband?” All of those things (and so many more) are wonderful, but September 29, 2003 is when Elliott was diagnosed with autism, and even though 11 years have now passed, the pain from that time in our lives resurfaces for me in waves – sometimes as raw and all-consuming as it felt then.
That was a hard lesson for me in the beginning – realizing that accepting first Elliott’s and later Ada’s diagnosis with autism was not a one-time thing. Rather, it kind of ebbs and flows through the different ages and stages of life. Accepting how autism impacts your child’s life when they are 3 is very different from how life is impacted at 13. It’s not really better or worse – just different.
Many of my peers who started their parenting journey a few years before me now have teenagers who are starting to drive, getting their first jobs, or even starting college. I genuinely love seeing this stuff on Facebook – and it’s even more fun to see the young folk I’ve known since they were in OshKosh overalls now driving minivans (oh how I’d love for Henry to have a fluorescent green PT Cruiser in a few years). But I’d be lying if I said seeing that stuff didn’t sting. Not because I’m not psyched for them, but because for us, autism is the big unknown.
I have no idea if and when Elliott will drive, or what types of employment or educational opportunities lie before him. He’s accomplished some incredible things in his life, but there are lots and lots of things that are just really hard for him. No doubt, my cup of hope runneth over when it comes to what the trio can accomplish in life. Our timelines are and will continue to be different from other families, and I’ve made peace with that. Heck, I will very proudly post “he passed his driving test and here he is driving a crappy pinto” pics of E man – even if he’s 25! The challenge is that he cares, and that sucks in the most painful ways imaginable.
Reality is that Henry will likely drive before E. Henry will likely have a job before E (if he works up the nerve to speak to new people about something other than technology), and will likely head off to college while E is still in the public school system. Right now, Ada and Elliott are at the same reading level, and very likely by Christmas she will have left him in the dust. Worst of all – Elliott knows all of these things, and asks me questions about them more and more. I hate this – he’s savvy enough to know all these things, and yet not able to change them. When I’m in my ugly place (September), I feel like it’s a crappy life lesson to learn at 13 – that sometimes really hard work and wanting something bad enough are not always enough. That no matter what, life is just going to present more challenges for him, and it’s ok to be ticked about that sometimes.
Having your cranky, kind-hearted, hormonally challenged 13 year-old son with autism sit with you on the red couch and cry because he hates how hard his autism makes some things, and wishes we didn’t need to hire someone to hang out with him and help him navigate social situations when he just wants to babysit little kids like all his friends are now doing is the ugliest kind of Mom pain there is (yes, worse than birth). No matter what, I can’t take his pain away, and even if we tried to completely shelter him that would be doing him a disservice. He deserves to learn the life lessons we must all learn, even the painful ones – though the Mom in me can’t help but want to soften the blow a bit as it seems like he’s getting kind of bombarded these days. Adding insult to injury, his bright red super skinny jeans now have a hole in the knee, and we’re having a heck of a time finding a replacement. Let’s face it – that look works for him and he does pull it off well.
But September is now complete, and just as we did 11 years ago, we will pull together as a family and charge ahead, even when it’s icky and hard. We learned long ago that we’re never going to be that regular, typical family next door, and if that means that hearing from a neighbor at the bus stop that Elliott must be doing well these days because it’s been much quieter in the early morning (even though she lives 2 blocks away), I’m ok with that. Being regular is overrated – I prefer hanging out with people who have a past (preferably sordid) anyway. If Tom & I do this parenting thing well, the trio will have many crazy stories to tell, they’ll likely need a good therapist, and they will continue to appreciate an occasional dance party when the going gets tough.
Sure, the big, hard, difficult questions are still lurking out there, but there are also lots of everyday accomplishments that we have to recognize. Such as:
Henry made it through his first middle school crises, and has come out the other side feeling accomplished (ok, not fist bump accomplished, but still). An assignment turned up as “missing” on the on-line grade system, and he had to speak to a teacher (gasp). Unbeknownst to him, I emailed her to share that he’s more than a little bit painfully introverted, and she was ready for his anxiety ridden visit. In the end, he had forgotten to write his name on it – whew, crises averted! Now, if Tom can just heal from gallbladder surgery enough to help the H man design & pitch an egg container off the roof without breaking it, we may get a side hug!
Ada loves her new school, adores her teacher (who is amazing), and is starting to get to know some new kids in her class. Last Friday, we got to attend her school exercise fundraiser, and even when it got really overwhelming for her and she sat on my lap covering her ears, a little boy approached her and asked if she would like to sit by him at lunch. Kind of made my day that even at her most challenging moment, a friend thought to reach out and let her know he cared. Ada will have her share of successes and challenges, and I know some of those ugly red couch moments may loom in our future as well, but for now, we’re just happy she made the choice to attend this school, advocated for it, and smiles every day when she walks to the bus excited for whatever new adventures 2nd grade holds.
The E man has not had an easy start this year, and that’s been hard for all of us. His anxiety is elevated to the point that we need to explore some options for him, both medically and educationally. While it’s difficult to see him struggle so mightily, and not know intuitively how to help him, there is some peace knowing he has an amazing support system of family, educators, specialists, healthcare providers, and even the nice guy who works at CVS who is impressed by E’s couponing abilities surrounding him. Let’s face it – middle school, hormones and autism are sometimes an ugly combination – we’re not going to figure this one out overnight, but we will just keep trying until we find what works. Together we will find our way.
E’s favorite song these days is “Let it Go” from the movie “Frozen”. He tends to play it A LOT – and not always at a volume that pleases his siblings, who are not as fond of the song as he is. He’s also taken to humming it (not softly) as he’s getting ready for school each morning. Even though I get where Henry & Ada are coming from, I think the E man is on to something. September is done – I believe it is time to “Let it Go” and move onward to face whatever adventures await us. After all – we have more than a few agenda items to tackle – but first and foremost, E & I need to find some super skinny red denim jeans. Thankfully, Eagan has a new outlet mall . . .