April Autism Blues

April is autism awareness month and unless you are living in the wilderness Unabomber style, you’ve likely noticed blue lights, lots of news stories or articles about autism, and funky looking puzzle pieces – sometimes blue, sometimes multi-colored all over the place.  Let’s face it – almost every cause has a day or a month these days, and sometimes it’s hard to keep track of what color ribbon represents what, etc.  Earlier this month I recall sibling day and national beer day (both of which I chose to honor) and I’m certain there are others I’m missing but because my sister and beer just happen to rank high on my personal priority list (not always in that order), that’s what comes to my mind.  But, as autism hits home for our family – not just in April but each and every day – we tend to take notice of the attention that April brings.

Bottom line – we spread autism awareness even when we’re not trying!  Let’s face it, sometimes I’d just like to pick up a pizza and not have to spread so much awareness (accompanied by my favorite awareness spreaders of course).  I’m grateful that for the most part, at least 1 of the trio is generally having a good day at any given time.  Hey – you celebrate joy wherever you can find it, right?

Sadly – April also shines a bright spotlight on the disagreements and ugliness that exist all over and through the autism community.  Truthfully, it can really get to me, as I tend to be a teetering in the middle, peace loving whack job.  But there are big, strong feelings about a whole bunch of issues within our community, and sometimes things get a little spicier than my comfort zone allows.  Either that, or I’m just getting too old and tired to fight the big fights.  Besides, the drama for me has been much closer to home of late.

Not long ago, Tom & I were the midst of another discussion related to the E man’s middle school challenges.  While this is sadly nothing new – especially this year – it sort of hit me out of nowhere that Elliott is a very different guy than he was even a year ago, and while it’s amazing to think back and realize how far his journey has brought him thus far, it’s also bittersweet.

Elliott has had a monumentally difficult time of it in middle school.  Not just with the academic aspects, but in nearly every way.  Being overwhelmed by the vastness of the environment, wanting so badly to succeed in the mainstream setting but unwilling to accept help because of a deep desire to be like everyone else.  Experiencing social challenges and feeling more and more funky due to puberty, an avalanche of hormones, and hanging out with 1,100 of his closest friends.  And last but definitely not least, feeling less and less confident because of a reading comprehension disability that impacts nearly every aspect of middle school and the deep desire to overcome it – preferably in a week or less.  Ugh.

The poor guy is a mess to the tenth – and it only seems to be getting harder and harder each and every day.  It’s the worst kind of pain to see your child struggle so mightily, and not be able to help him.  I hate that things have to be so hard for him, and while I’m all for giving him the tools to make some positive change on his own, I feel like his toolbox is filled with puberty hormones instead of proper tools, and it’s only making everything more challenging.

Last week, as Tom & I prepared for yet another Elliott IEP this year, I suddenly realized that it has been such a long time since I’ve seen Elliott genuinely happy.  While the E man has always been a larger than life kind of guy, he’s also almost always  happy.  Even during the earliest and darkest days of autism, he was laughing and joyful the vast majority of his day – interspersed with severe ugliness of course.  When I look back through photos, it’s nearly impossible to find one without his bright and beautiful smile  – he’s just always been a smiling and happy guy for the majority of his days even when working hard to overcome some serious obstacles.

All of a sudden it hit me that I haven’t seen him like that in such a long time, and while I can tolerate a lot when it comes to autism, E losing his zest for life, his sense of adventure and his above average self-esteem makes me want to draw my line in the sand.

Last Friday, we gathered with some amazing educators who care about E, and are committed to helping him achieve more school success in every way possible.  I was so not looking forward to it, mostly because we usually have to painstakingly go through all the God-awful test scores and assessments that clarify in giant, bold ways, that he is light years behind his peers.  But guess what – we didn’t!  Instead, most of our meeting was spent discussing how and why E is successful in a variety of ways, and we were all so excited that for once, the data established a very clear message – E learns more effectively and is far less anxious in a smaller, more structured setting.  Not only that, but his reading comprehension scores have gone up 2 grade levels – which is crazy pants, awesome!

While we knew that E would be devastated to learn that he would be now spending more time at the smaller school setting  (you could say he’s not a big fan of change), we were also able to allow him to stay at his middle school for his favorite class  – Technology Education (this is “shop” if you’re old like me).  As expected, a giant meltdown ensued when he heard the news, despite our attempt to put a positive spin on it, but to be fair, it was not nearly as ugly as we were anticipating.  Who knows, maybe this growing up stuff is starting to click with E?

Today was his first day of his new schedule, and because his bus schedule can’t be modified that quickly, I am serving as his “transportation” between schools for now.  He walked into the school office at our appointed time, a bit quiet, but not anxious at all, and proceeded to walk a good 20 paces ahead of me to the car.  When he arrived at his smaller school, he immediately filled out a nametag for himself even though I’m fairly certain everyone there knows him, and then marched off down the hall with his new Case Manager – the amazing Mr. K, ready to take on the day.

I was left to work out meds in the school nurse’s office, and while I had tried to remain upbeat and cheerful with E, I immediately broke out into an ugly cry the moment he was out of sight, which was a pinch embarrassing.  Every fiber of my being wishes that middle school and Elliott could be better friends, but if that can’t be true for now, at least my son had his chin up, his can-do spirit in place, and his super skinny jeans to help him make a good impression throughout his day filled with change.

One of the hardest lessons we all need to learn in life is that sometimes what we want is not what’s best for us.  Trying to process that as a 14-year-old guy during puberty with a heap of autism is even harder.  But today, the E man swallowed a bitter pill, and kept on walking down that hallway while his Mom had the meltdown.

As I drove home, one of E’s favorite Supertramp songs came on, and I sang along to “It’s Raining Again” and thought about how amazing he is, and how much I love his fighting spirit even when it makes parenting almost too painful.  I only hope that as the days pass and we all settle into our new normal, that we’ll see some glimpses of E’s beautiful smile once again.  I know it’s lurking in there somewhere . .

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3 responses to “April Autism Blues

  1. Kammy,
    Your words clearly conveyed your feelings and pulled me right along with you. Congratulations to E for the huge gains in reading! Although my ASD kiddo has a significant cognitive delay and appears to have less awareness of differences, he also strives for independence. It’s often painful that I can’t give him more freedom, especially as we begin the guardianship process this year. So, you are not alone in the sudden tearfulness. Pass the tissues and wine!

    Like

  2. Beautifully written…again & you are absolutely not alone. So glad that we made the choice to go with a smaller school for N. Sadly, that school only goes through 8th grade, so the search for the best fit is on yet again. We’re right there with you, 14, hormones, autism & immune deficiency, Ugh!

    Like

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