2.2 Miles and Beyond

Sometimes I feel wildly unsuccessful on this parenting journey. To have your child struggle so mightily and not know instinctually how to help is a truly awful feeling.  E man is in a rough spot – and we are genuinely struggling to figure out how to help him in the midst of what feels like a growing mountain of challenges.

Elliott has autism – that makes some things really hard for him, and also gives him some really cool strengths. E has a memory for numbers that astounds me.  He knows birthdays, phone numbers, addresses, maps like nobody’s business.  While Henry struggled to memorize his combination lock this fall, and then really struggled when he realized he also had a gym combination, E man memorized his, both of Henry’s and several “lucky” classmates who have space near him in record time.  Remember that part about some things being really, really hard for him?  Yeah – well apparently shouting random peoples’ locker combinations out loud in the hallways doesn’t help to make middle school friends.  But when you don’t have friends, and struggle with how to start a conversation, that for some reason seemed like a good plan & I get that.  He’s not great with boundaries, he’s really not shy, and he wants to try out some new and interesting ways to interact with his peers.  Sure, I wish he could learn from his social missteps without feeling the need to repeat some of them several times, but frankly, I love that he’s socially motivated, wants to interact with others, and that he’s not afraid to fail a few times in the process.  To be fair, Elliott’s autism is not his biggest challenge these days – it’s his learning disability.

I’ve written about it here too many times to count, but E has a reading comprehension disability that affects every aspect of his middle school experience. The crummy part is that it bothers him to the point that it’s causing some serious anxiety, and I hate that.  Not everyone that has autism has learning disabilities – some do, some don’t and everything in between, but E does in a substantial way.  This causes so much challenge for him because he has this insatiable desire to be in mainstream classes all the while knowing that they are for the most part far beyond his grasp at this point.  Every single day, without fail, we have some sort of discussion at our house about when he can move into this class or that class and why he needs help and how he wishes some things were not so hard for him to learn.

No matter what, I’m never going to be the one to tell him he can’t achieve something. First and foremost, I believe in him with every fiber of my being, and I’ve seen him overcome obstacles that no one thought possible.  But, I do tell him that it will be hard, that even though it’s not fair he will need to work harder than most others, and that it’s a process that can’t happen tomorrow.  It’s like a broken record – every day he asks something like “can I be in a big math class by Monday?” and I tell him that I believe he can be in a big math class by goal setting and working hard, but it won’t happen by Monday.

There is a certain ugliness where E is at with autism/anxiety/puberty/ADHD even beyond the crazy images that combination likely poses in your mind. He is savvy enough to understand his challenges, but not fully able to overcome them to his liking – and that’s an awful place to be.  Where we don’t quite see eye to eye is in the effort/making-an-action-plan department.  He wants things done by next week, while Tom & I would love for him to make smaller attainable goals rather than allowing himself to be so overwhelmed with the enormity of it all.  Sure, hormones and a big splash of anxiety don’t help, but the conflict inside of him seems to get bigger even as we try every strategy we can think of.  It’s an unpleasant place, and for now, it’s day by day around here.  Tom & I are in that icky place of trying to decide whether it’s worth working through the vast behavioral difficulties he struggles with or realizing he just needs a smaller, more structured learning environment for now.  That doesn’t mean it’s not important for him to learn how to maneuver through some of these challenges – but if it’s at the expense of another school year spent falling further behind and no meaningful academic gains, is that the best choice for him?

And while in some ways he seems so vastly different than his peers, in other ways, he is very much a 13-year-old. Last weekend, he asked me out of the blue if he could call (random girls name).  I asked who she was and he told me I didn’t know her.  I asked if he had classes with her and he said no, but that he thought she was a nice girl.  So, I awkwardly launched into a funky discussion about how it would be better to talk with her at school first, and ask if it would be ok to call as just randomly calling a girl you don’t know without a reason might make her feel a little uncomfortable.  Then I silently cursed Tom for being gone at the moment, and finished with something about how teenagers think about things differently, and she might assume he wants to have a girlfriend instead of a friend.  Then, he looked at me with that 13-year-old snarky-yet-confident expression and said “why wouldn’t I have a girlfriend?” Ugh.

Yeah – it’s been a real party around here these days, and my peers are telling me it’s going to get worse before it gets better. Oh the joy!  That’s not even counting Henry with his own interesting middle school issues, or Ada who is kind of in an awesome place except that she feels the need to carry an entourage of stuffed animals with her wherever she goes and then pawns them off on me.

Finally, a couple of weeks ago, E came home and asked about moving to some random big class, as he does, but this time followed it up with a new plea – “why can’t I walk home from school?” To be fair, it was refreshing at first to have a new issue to work through – new strategies, new reasoning for why he should be able to do something.  At first, we were not open to it at all – E’s school is 2.2 miles from our house, down the sidewalk of a busy street.  He’s good with rules, but cars can be distracted – I was completely freaked out.  So, I negotiated, and he reluctantly agreed.  He walked from his school to his old elementary school which does not involve a street at all.  Not only did it go well, I could tell instantly that it gave him a sense of pride that had been missing all this school year, and I realized we had to find a way to make this work.  So, we did some training, and talked about how people don’t wake up one morning and run a marathon, but little by little they increase their distance.  The first time he had to cross an intersection, I was in a panic.  There I was, sitting with Ada in the McDonald’s parking lot, and just as we had discussed, he called me from his phone, looked both ways and crossed (and yelled hello to a former teacher).  It was huge.

All week, we inched it up, and then when he watched the weather forecast on Sunday, he looked at us and said “Monday is the day”, and so it was. Yesterday, I got 2 calls from him during his walk and a text message from a friend making sure he was ok before we caught up with him on the sidewalk a short distance from our house.  He was literally beaming, and wouldn’t even slow down or let me help him with his backpack until he got all the way to the house.  Mission. Accomplished.

He made a goal, broke it down, trained for it and attained it. He felt every bit a 13-year-old, and suddenly that made all the other challenges in his life seem just a little bit smaller.  I love it when he reminds me that anything is possible and never stops putting one foot in front of the other.

So, if you happen to be driving down our street today, feel free to wave to the E man . . .



“Let it Go”

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 . . .