The “A” Word

Wow – this parenting journey can be humbling – don’t you think? The last month, for me, has been filled with emotion, drama, melt-downs, tears, & acceptance – & no, I’m not talking about my kids! I’m a bit of a mess, friends. While I’ve always been someone who tends to overthink things, parenting in general – with an added dollop of autism on top – often feels like riding an emotional roller coaster. Just when I think my ride has come to a complete stop, I’m surprised by another steep hill. Let’s face it – I probably would have been a bit of a wacky Mom even without kiddos with autism (hey, at least I own it) but the last few weeks, I don’t even appreciate my own company! Ugh.

Both Elliott & Ada have their IEP meetings in May. This is not great timing, and it’s also not easy to have both so close together. IEP’s, while necessary, are not fun, and are a constant reminder (at least for me) of the glaring differences between my kids and their typical peers. While I think the elementary school both E & A attend is fabulous and they do everything in their power to make the meeting and the process a positive experience, I can’t help but feel that we’re focusing on all the things my kids suck at. I own this is my deal – it just stings a bit, that’s all. This year had an extra shake of ugliness as Elliott is transitioning to middle school.

I thought I was hanging in there – I knew the whole middle school thing would a) stress E out b) stress me out & c) have an element of fun & excitement for E, but in the end, I have to admit that 90% of the challenge was mine. Once we made the call on which school E would attend, I kind of thought we had made it through the rain. However, when we were invited to attend the parent orientation night for all parents of newly incoming 6th graders, I just lost it. There were hundreds of us in that giant room – all a bit nervous but eager to “get” how this whole middle school thing would work. After all, let’s face it; it’s been a few years. The Principal even tried to ease us by opening with a photo of himself in middle school complete with an awesome terry cloth shirt circa 1980. His feathered hair made us all feel at home, and my urge to explore whether you can still buy a giant sized tube of Dr. Pepper chapstick was difficult to suppress.

He gave a great speech – all about how our kids are growing up, how their independence is beginning to emerge, and how middle school will help to guide them ever more towards adulthood. In that giant room full of people, I suddenly felt terribly alone. I could not stop the tears – & I felt embarrassed. Tom even paused his Angry Birds game for a moment out of concern – so you know it was bad. I could not help but feel, after every sentence he uttered, that I could insert the words “but not my son”. It hurt. It was like that ugly raw pain following diagnosis – where you know what’s coming, but just saying the words somehow makes it different and worse. It was me suddenly confronting the new and different ways that autism affects Elliott as he ages, and mourning what his adolescence won’t be.

I’m finding that my acceptance of how autism affects my kids is a continuing process. Autism at 3 looks very different at 13, and while I worked through the pain of accepting one and then two of my kids having a disability that will forever change their lives when they were young people, I think I’m realizing that I’m likely going to continue to need to find my way to acceptance as they reach different stages of life. It’s more on-going than what I envisioned – and that’s ok. As Ada would say – my reaction was just “unexpected”.

Yesterday, we had Ada’s final 6-month-review meeting as her therapy program comes to a close. These meetings, in many ways, resemble IEP’s in that there is great effort by our team in focusing on her many accomplishments, but as a parent, I can’t help but go straight towards the charts where her deficits stand out like an unfortunate prom dress. All in all, she’s hanging in there. She’s not “best outcome” and she continues to have some challenge areas that may always be part of who she is that will require us to approach learning certain things in creative ways. But, she has friends, she loves school, and she’s a huge sassy pants (mostly with her brothers) who stands up for herself without question which I can’t help but love.

So I’m not so sad to see May go. We missed spring all together in MN, and my mood has sort of followed the weather pattern. Blah. Besides, I know I sound a bit whiny – and frankly, I get that in the big scheme of things, we’re good. No huge tornadoes, no horrible health crises, supportive family & friends, nearby access to DQ – we’re ok. This acceptance journey has had many components for me, and bottom line I’ve had to allow myself to be sad, and once I stopped fighting it, the fog has started to lift.

Sure, middle school will have its nasty elements – but it’s supposed to – for kids with autism, and for everyone. Does he have a passion for vending machines and stop lights that others don’t – yep, but he will also have the ability to memorize his own locker combination (and everyone else’s too) within 30 seconds and NEVER forget. Not a bad guy to have in your corner.

Ada has friends – true friends, and believe me when I say that I smile every time I look at those crappy assessment results (who ever thought to name a test the “Woodcock Johnson” and expect people to not laugh?)in the social skills categories. It’s kind of amazing that we’re talking about a little girl with autism who not that many years ago was fairly uninterested in other kids, and now spends most of her free time playing with the neighborhood kids, or with her American Girl doll – Saige (this is not a statement I have ever envisioned writing in regards to Ada).

Henry has had a great experience in 4th grade, and we don’t take that for granted for even one second after the difficulties he faced last year. He’s got a great group of friends who are kind of adorable, say the word “dude” too much, and share his passion for Minecraft. Plus, he’s taking up the Trombone this summer which is certain to add a fascinating dynamic to the cat nap schedule at our house. He even spontaneously smiles now and then – but does not allow me to meet him at the bus stop unless it is raining (he has his limits).

Most importantly, despite the uncertainty that change brings, we all continue to put one foot in front of the other, and do our best to find humor in as many awkward situations as possible. As hard as it is to face those icky IEP goals – the E man has gone from a 1st grade reading level to a 3rd grade reading level in 9 months -something we could never have imagined one year ago. While I am often surprised by what things challenge him in life, I love that he can blow us away with amazing progress when we least expect it.

So take that autism! I’m done (for now) with lamenting what won’t be for my kids during adolescence, and am excited to see how they surprise me. It’s almost certain to be interesting, likely a bit awkward, but always, always, inspiring . . .

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4 responses to “The “A” Word

  1. Mom, as for the IEP’s ..you are your greatest advocate for your kids…say what you want for them!! We all go through life a different way….just go for the ride with your kids and you’ll most certainly be amazed…and more at ease,,, from a mom that took time to understand the ride concept….blessings coming your way! Sue

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