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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No Pain No Gain

I post too many cat pictures on Facebook. I know I do because my extended family tells me so with regularity – and I appreciate that they do. Admittedly, I get a little perseverative about it, and need some help establishing healthy limits. As a general rule – if I post more kid pics than cat pics, I feel like I’m doing ok.

My cats amuse me. Even on the most stressful of days, I enjoy observing the politics of cat life around here. Monumental things like who gets the top shelf of the cat condo today, or who wins the coveted spot in front of the fireplace (which has only recently been turned off due to a weird MN spring this year). The cats are a constant reminder to me that 80% of our communication is non-verbal – for them, even higher. It’s all in the way you twitch your tail, look down on your fellow cats, or go to the top of the stairs and glare when others want to get by you. Then, 5 minutes later, there is a ball of 3 intertwined in the most uncomfortable looking scenario possible sleeping for hours until the next turf war erupts. They communicate with me and with one another all day long – just usually without chatting.

I’ve had this conversation many times with other autism Moms – because I think we fundamentally get it from living it in a very direct way each and every day: talking is not necessarily communicating. Case in point – my Elliott talks all day long, mostly to me, and quite literally from the moment he wakes to the time he drifts off to sleep listening to his favorite Toad the Wet Sprocket song – he is constantly talking. He talks about a lot of things, but often, we have the very same back and forth each day, which goes something like this: (E) “But why would you take Pilot Knob instead of 35E to Home Depot – that’s not the way I like to go” (K) “Topic Change” (E) “Where are we going for Thanksgiving this year and why did we decide to have 3 kids?” (K) “I’ll talk with you when I’m out of the bathroom.”

Does he really want answers? Not really – it’s just what he does, talk, talk, talk. It soothes him, he repeats himself a lot, he topic changes frequently, and if he does come up with a truly novel idea or question, and I take the time to try an honest back and forth with him, he will mostly topic jump again, leaving me feeling sad that we couldn’t share a meaningful back and forth.

The bold truth is that there are many non-verbal kids with autism who are much better communicators than Elliott. Back and forth and honest exchange is elusive for E. This causes me much sadness as I watch him try his best to maneuver the world in his own way. I feel a deep connection to him, but it takes a lot of work and it’s more of a 75%-25% ratio (I’m putting in 75% of the work vs. his 25% on a good day). Truth – there is just an ease in communicating/being with Henry & Ada that does not yet exist with Elliott, and it hurts to say that out loud. This is probably the most painful thing for me as a parent – to see him struggle with “connecting”.

We’ve seen glimpses here and there – and while they hurt, they are progress. He loves his school, and always wants to go to every event they hold. Once, at a family fun night, we overheard a student make fun of Elliott. He didn’t hear it, but we did. At that time, I don’t think it would have fazed him even if he had. But recently, he’s been having challenges at recess because he’s actually interested in some kids. He’s struggling with his approach, and having a number of awkward encounters (lots of terrific opportunities for social skills topics according to his teacher!) some involving wanting to hug girls and talk about marriage (always the planner), but while he’s light years behind his peers socially, he is finally caring.

As hard as it is to see him struggle and work through these challenges at 12 instead of at 5 or 6 when his peers did, there is an element of hope and progress to celebrate. To experience sadness and pain over a lack of friendships and want to have meaningful back and forth with your peers, you have to care about it. He’s just starting to care, and I see him experiencing loneliness & pain in new ways, and no matter how necessary this developmental step may be, it’s the worst pain imaginable to see your child struggle with something so natural for most. I’d do anything to take the brunt of that pain for him, but this is a journey he must travel on his own, no matter how many supporters are cheering him on from the sidelines.

Yesterday, 5th graders from each elementary school in our district gathered at the high school for a track and field day. E was excited – mostly because he got to bring a Lunchable, but it was something he genuinely looked forward to for days. He wanted me to come and see him, so after Ada finished Kindergarten we headed to the track. It was crazy, fun, loud, and celebratory. Each school had a distinctive color so you could tell them apart. After we found E’s school shirts, we sat down in the bleachers and tried to find him. There were tug of wars going on, and the kids that were not in that event were all hanging out with their buddies in the stands, enjoying one of the first sunny, beautiful spring days we’ve had. Finally – we spotted him. He was sitting in the front row of the bleachers, watching the tug of war, and chatting with his Para-professional, Mr. M.

Don’t get me wrong – Mr. M. is amazing, and we are so grateful that E has such amazing educators in his life. But, as I sat there, watching all the kids laugh and chat with their friends, I couldn’t stop the tears from rolling down my cheeks. Oh how I wish he could have had a friend to hang out with – to share the experience with and to celebrate with. We walked down to say hello, and he told us he ran the 800 meter in good time, but as we walked back to our car, I could not shake that feeling that in many ways, he felt alone amongst all those people.

We all struggle to find our place in the world, and forming connections is a part of that process. As someone who teeters constantly on the introvert/extrovert line, I contemplate that a lot. Sometimes I’m a people person, and I’m often happy to be the inappropriate one in any group, but I also need more alone time than most. I think Elliott is a 12-year-old who is just trying to figure out connections in his own life (which may be before or after finding a wife according to the playground staff) – how important they are, how fragile they are, and how much fun they can be. He’s on the outside looking in right now, but the E man is nothing if not determined. He will forge ahead, sometimes awkwardly but always with intention – and in the meantime, I’ll be here to chat with him about the best way to get to Home Depot & where to find great deals on salmon . . .