A Beautiful Day

Sometimes beauty is found in unexpected places or in moments and memories that will live on with us always. In our family, with 3 kiddos, 2 on the autism spectrum, when a day gets particularly ugly, I’ll occasionally whisper to Tom “well, at least they’re attractive”. The truth is my funky sense of humor helps me navigate the more challenging days, and while I’m certain the awkward, adolescent days are looming for my trio, for now their smiles can usually brighten even our difficult days.

One expected place to find beauty is when you get the chance to meet a Pageant Queen. Miss Minnesota, the lovely and talented Rebecca Yeh, is truly beautiful – inside and out. Rebecca has been serving as our Minnesota Community Ambassador for Autism Speaks for the past year and has graciously been helping out as much as she is able with her crazy schedule! Rebecca’s brother, Phil, is on the autism spectrum, and that inspired Rebecca to choose Autism acceptance and awareness as her platform during the Miss America pageant.

So, a couple of months ago, in the middle of our never-ending winter, there was an evening when I trudged through the snow in below zero temps to attend an Autism Speaks committee meeting. I had considered cancelling that day, as my mind was preoccupied, and my heart was just not into it at that moment. Poor Elliott had been going through a number of challenges as he acclimated to middle school, and I felt sad and a bit lost in my thoughts. Rebecca, who looked lovely as usual (especially compared to me in my yoga pants and oversized winter boots) was genuine and supportive when I shared some of E’s challenges during our pre-meeting chat, and how we were doing our best to help him. She recalled her feelings from middle school – trying to figure out who she was, trying to fit in, being so proud of Phil when he accomplished something that had been difficult for him, and then sometimes being embarrassed when awkward moments or situations would pop up.

For some reason, her words just hit home for me. I suddenly realized that while E’s challenges were real, in so many ways, they were the same types of challenges that every middle school kid faces – with his own personal spin, of course. Rebecca then shared how meaningful her interactions with students have been during her Miss Minnesota reign, and I realized then and there that I wanted her to share her message with the schools in our community, and how glad I was that I had attended the meeting that night – yoga pants and all.

First up was my daughter, Ada’s, school, Northview Elementary. Ada is a First Grader with an amazing teacher who just “gets” it. Mrs. E arranged to have Rebecca share her message of acceptance for the differences we all share, and even asked if Ada would like to introduce her. (Proud Mom alert). Ok – I must share that while Ada is more than a little outspoken at home – especially when disagreements arise with her brothers – she tends to be very quiet and shy at school. When I asked her if she wanted to give it a try, she only paused for a moment before excitedly agreeing. She practiced diligently for days, and I knew she was genuinely vested when she told me she wanted to wear a dress for Rebecca’s visit (Ada would almost always choose to wear teenage-mutant-ninja-turtle attire before wearing a dress!) When the morning arrived, and all her first grade friends started pouring in, I could see her visibly tense up, and I must admit I was worried it might be a bit too much for her. However, when the moment arrived, Rebecca kindly helped to lower the microphone to Ada’s level, and she spoke softly but clearly, “please welcome Miss Minnesota” with a smile as bright as the summer sun.

It was just as lovely watching Rebecca interact with Ada’s classmates – sure, they had fun questions about her crown, and how she manages to walk in high heels, but they also spoke so proudly about the ways they differed from one another, and what made each of them special and unique. When her violin came out, it was a whole new kind of amazing. Rebecca shared how she had been quite shy as a child, and how her violin helped her “connect” with others. Then, the kids shouted out a bunch of different emotions, and Rebecca would musically create that feeling using her violin (“Jaws” was a favorite!)

As I stood in the back, watching all of Ada’s classmates fully engaged and excited, I realized that while her words were eloquent and perfectly suited, that her “connection” to the students with her violin was even more powerful. They all smiled for pictures with Rebecca and were excited to share their unique and special qualities with her, and as I watched my Ada eagerly participating and sharing as well, I couldn’t help but realize the true beauty of the moment.Miss MN with Mrs. E's class

Later that day, Rebecca spoke with young adults in the Transition Program of our district. They, too, were enamored by her crown and her shoes (which were awesome) but when the violin came out, it was pure magic. It provided an open door to talk about many relevant topics, and as lots of the students were music fans, tested Rebecca’s knowledge of songs from “Star Wars” to “Frozen”, with a side of “Michael Jackson” just for fun.

After her talk, Rebecca posed for lots of photos, signed some autographs, and chatted with the students. At one point, there was quite a line, and a young man who was patiently waiting to meet Rebecca asked me if I would share my birthday with him. I did, and then he opened his notebook, asked me how to spell my name, and reported that I was number somewhere between 4-5,000 in his book (I’m not so good with numbers but work with me here). He told me that he’d been keeping a birthday notebook for many years, and then proceeded to share with me some notable people who share my birthday. We chatted about a number of things, and while it was different than it is at my house where we have all learned to say “topic change” between subjects, we had a really fun conversation before it was his turn to pose with Rebecca.

My exchange with that young man was my moment of unexpected beauty that day, and a life lesson I will carry with me always. You see, my Elliott is kind of obsessed with birthdays. Sometimes, it’s hard for Elliott to think of ways to get to know people or converse with them, and birthday chat has helped him connect with others in new ways. Often, it’s a bit awkward, as E needs a bit of polish on his opening line and his frequent use of “topic change” during conversation could use a some fine tuning, but once E knows your birthday, your name goes on his calendar, and he will never forget it! He has hundreds memorized, and soon, my guess is that he’ll need to start carrying his own birthday notebook. I’ll admit there are times when I wish he would move beyond birthdays, and expand his “getting to know you” repertoire, but when I mention that to him, he tells me “Birthdays are my deal, Mom”.

But just as Rebecca shared with the students that day, we all have our own unique qualities and ways of connecting with others. This young man could not have been more charming. While his birthday notebook was a way for him to start a conversation, he was so fun and engaging to talk with that I’m still thinking of our exchange today. Soon, I started to wonder what life might have been like for this young man when he was 13? Maybe his birthday notebook exchanges were slightly awkward now and then, and maybe there was a time that his conversation openers needed a bit of polish? Maybe there was a time that his Mom was amazingly proud of his many accomplishments, yet still hoped that connecting with other people would become easier for her son? Maybe, I realized then and there that his birthday notebook was as powerful a communication tool as Rebecca’s violin, and that meeting this young man has opened my eyes to the beauty of connecting in your own way.

Rebecca’s beautiful smile in the photos she took with the students that day will be a fun reminder of the opportunity they all had to meet Miss Minnesota, and I believe the beauty of her music will inspire many to connect with the world in their own way.

And if anyone would like to know when Rebecca’s birthday is, I know two great guys who can help you out . . .

Bad Mom

Last night, I lost my temper with the trio – and it wasn’t pretty.  It was nothing earth shattering that precipitated my meltdown, just a million and one little things that finally sent me tumbling over the edge.  They deserve better than what they got last night, and while lots of parents now and then lose their temper, the negative effect on kids with autism (at least mine) can be longer lasting.

I don’t think there is anyone from my youth, adolescence or young adulthood who would ever have described me as a patient person.  It’s never been my strength.  Loud, weirdish funky, & unashamed to moon people from random cars would all rank above patient.

Parenting changes you – in ways you sort of expect and often in ways you could never have envisioned in a million years.  I never imagined that I would ever be a stay-at-home-parent – it was not something I wanted for myself, and I am often as surprised as anyone that it’s come to be (for now).  Never thought I’d ever drive a minivan.  Never thought there would be days that were so difficult that the 7 year-old behaves in a more mature manner than me.  (I didn’t say the 11 or 13 year-old, because everyone is more mature than adolescent boys).

Now, adding autism & ADHD to the parenting mix makes for an abundance of unexpected and unanticipated experiences.  Even though patience has never been my strength, I’ve had to learn how to make it one because my kids sometimes need vast amounts.  So, unlike at 17ish, many more people would likely rank my patience as a strength above unashamed to moon people (a positive thing in more ways than one).  No doubt, weird & funky would still far outweigh patience, but I’m good with that.  I own my weirdness.

Every parent who has a child diagnosed with autism (or any type of special need for that matter) must travel their own path to acceptance.  For me, this path has been long and had several forks in the road.  The raw pain gives way to making your life’s mission to do everything in your power to help your child/children.  The accomplishments are amazing, and are all hard fought for and usually a lot of work.  It is the kind of joy I could never have anticipated before the trio came into my life – watching them overcome an obstacle that seemed insurmountable or accomplish something that comes naturally to most but might take years for my kiddos.  It is overwhelmingly cool – and I do my best to try to recognize the small steps along the way because they matter.

Autism at 13 looks so different than at 3.  Having 2 kids with autism who are very different and don’t always have success working through their disagreements sometimes requires more patience than I have in reserve.  Especially in never ending MN winters where we’ve all been locked up in the house way too much and when it’s evening and ADHD medications have long worn off so that running, jumping and throwing things down the stairs is going on along with a 13-year-old who has had a rough day and been argumentative and anxiety ridden since school ended asking again and again why you don’t want to talk when you’ve asked for space repeatedly because you are losing it.  Yeah that.

So, I lost my temper, and I yelled.  I just boiled over knowing all the while it was bad, but unable to stop.  My kids can be challenging for me sometimes.  Even though I know that they depend on me to be calm when they can’t, and to be their stability when anxiety overwhelms them or they can’t find a Target coupon or Mom uses the wrong detangler after bath or people don’t practice their Trombone even after 5 reminders and then forget about art project homework from last week, sometimes I fail.  Last night was an epic failure – I yelled and it freaked them out.

I’m sad today that I let little things get the best of me.  I’m sad that I’ve been up until 3 for the past few nights researching curriculums and ways to help middle schoolers keep progressing academically when they’ve hit a wall and it makes me tired and cranky even though I need extra Zen like serenity these days with 2/3 of my people having elevated agitation between 5-8.

But just like Elliott now tells me when he calls during a rough patch at school, sad about where he is sitting in Science or ticked that he can’t join his old group in math because he chooses to repeatedly express love to a group member who freaks out, “I’m the only person who can turn my day around”.  The good news is he has been turning his days around!  He has his moments of challenge, but more often than not is communicating and working through challenges and having much more success as a middle school guy.

So today, I’m well rested, medicated, and prepared to be as Zen like as needed for the trio.  Ada has decided to throw in the towel on MN and is contemplating a move to multiple South American countries, and Henry initiated a conversation with me this morning (unrelated to Minecraft) so things are looking up.  E will likely want to chat with me about my unexpected behavior, and will probably summon me to the red couch.  He will also likely share that his Mom yelled in her loud voice to a variety of Target employees, but they’ve heard worse (still feeling sorry for the person who he discussed the human development curriculum with).  My offspring deserve better, and since they’ve taught me that I’m the only person who can turn my day around, I’m going to do just that.  Grateful I have such great teachers.

But I’m still going to be weird.  And I’m not completely ruling out mooning people, though I’m not as agile as I once was . . .

Crappy

Crappy.  It’s a word I use too much, but kind of works perfectly these days.  Jerky – another word, completely made up, that works quite well in this household, which frankly just serves as a substitute for words best not used when you live with a first grader.  That one might go like this – “that was a jerky thing to do”, or from sibling to sibling “it’s jerky to laugh at me when I’m sad”.  It’s a bit funky, but it works, and compared to a number of alternatives, it fits our lifestyle.

It’s no secret I was sort of glad to bid adieu to 2013 – against my better judgment, I even got whiney on Facebook on more than one occasion which is generally not becoming for anyone, and a violation of my own personal code of conduct.  Considering that all winter break (which was insanely long due to our “crappy” Minnesota weather) we worked on a family goal of not saying anything unless you have something nice to say, it appears I may have been the biggest offender.  Ugh.  But as we ushered out 2013, and welcomed a new year, full of promise and unknowns, I came to realize my crappy attitude was still seizing my days.  Regardless of the challenges we have faced/are facing/will face, we are not alone, and life challenge is all relative anyway.  I realized it was me and not our challenges that were the problem.

Much of the time I can weave enough humor into my life to make the ugly stuff a lot less ugly.  It’s kind of a challenge for me most of the time to find ways to infuse humor into the unlikeliest of circumstances – frankly, I’d usually consider this one of my strengths.  It’s my coping mechanism, and it can be a little weird, but it’s worked for me for the long haul, and gotten me through some otherwise really unpleasant life experiences.

But as I look back over the last couple of months, I can now recognize that I’ve been slipping further and further into a black hole that is frankly unattractive and unbecoming.  I’m sleeping a lot, I don’t want to go anywhere, my temper is short, I’m not interested in social activities or even chatting with people, and I’m consumed with worry about how to help E man through his challenges in middle school without completely neglecting Henry and Ada.  Just overall crappy.

If you’ve read the Red Couch before, you know I’ve always been quite candid about my need for SSRI medication.  It’s been part of my life since Elliott was diagnosed with ASD, and if I’m really honest, I’ve likely had a pinch of anxiety well before autism ever entered stage left.  However, now that I’m in my mid-40’s it’s quite likely that I’m gearing up for some interesting hormonal changes that will clearly be less than a joy ride about these parts.  Suffice it to say, I’ve visited with my healthcare provider, and I think I’ve figured out what does not work (based on the last paragraph), and now it’s time to do some tweaking.

Throughout my parenting journey, especially when it comes to autism, I have often felt like working through the hardest and most challenging times have also allowed for enormous opportunity for growth.  Usually, when something really tough is happening, I get sad, make an action plan, work through it, fail, try something new, and eventually figure something out.  Then, after I’ve learned a life lesson or two, I try to share with others to help them avoid pitfalls, or at the very least, let them know they are not alone.  Experience sharing and connecting with others who “get” your deal is key for me.  It’s gotten me through some really tough times, and I’m grateful to have a lot of great peers who put up with me through thick and thin.

This time, however, I haven’t found a solution for my challenges yet, so I’m not following my usual action plan because I’m still at the failing stage of working through this one.  So, why am I sharing this bummer story with you?  I think mostly because I am in a pretty crappy place, not feeling myself, and I may need a bit of leeway to work through this, and the Red Couch has just been too silent of late.  Hopefully, I’ll be back to my regular jerky self soon – but for the moment every little challenge seems like climbing Mount Everest – and I’m tired of it.

But there are signs of hope.  Last night, while Tom took Elliott to a friendship group, and Henry was being cranky about doing chores, I was able to perform a wonderfully imaginative interpretive dance number to the “Star Wars” theme song that made even my snarky 11 year-old smile and say “Mom, please!  You know you’re not a good dancer”.  Ah, yes, there is always hope . . .

Not so Merry

Ok – I’m just going to say it – I’m cranky, totally lacking in holiday spirit, and just generally unpleasant.  Heck, I can’t even gather up the festive energy to pen our annual Christmas letter, which is usually one of my favorite holiday activities.  Our tree is up, but Henry is now too cool to decorate it, Ada (aka “Bob the Elf”) dances so much that little actually gets on the tree, and Elliott tried to convert to Judaism for the 2nd year in a row in an effort to get out of tree decorating (this suddenly goes away when the tree is done & he remembers his passion for bacon).  The tree is so blah this year that the cats have not even tried to climb it.  I’m hard pressed to feel the “fa la la”, and just can’t seem to break out of the funk.

There are a host of reasons besides the usual ones for my foul mood.  Lots of unexpected & expensive repairs to vehicles & household stuff lately that is never fun, and even less so this time of year.  Plus news of friends and family experiencing serious health challenges that are difficult journeys for everyone involved.  On top of all that, the weather here in Minnesota is ridiculously cold – much more so than usual.  Despite our reputation of being subzero 9 months out of the year, we usually don’t see ugly cold until January/February, and this year it went from “all right” to “hell no” in about 24 hours flat.  So – no fresh air as it’s dangerously cold – & no sledding or outdoor activities for the trio which often leads to a lack of peace in the house.  Blah.

The Red Couch has been relatively quiet of late, except for my comments about the Autism Speaks/Suzanne Wright drama of last month, I’ve not really been sharing updates about the trio.  There is some good news (saving so I can get the ugly stuff out), but know that 2/3 of the trio are doing really well in school.  Any guesses on the 1/3?

If you guessed my friend Elliott, the 13-year-old-puberty-stricken-middle-schooler, then you would be correct.  Friends, it is not pretty.

The beginning of the school year went above and beyond what any of us expected.  He loved the larger school environment, the moving around from class to class, finding his way around a new place, new interactions with people.  He seemed to embrace the new expectations he faced, and made it his mission to get to know lots of new people at the school including the office staff, custodial staff, the lunch folk, and of course, his Principal.  Sometime in October, the honeymoon ended, and it’s been pretty ugly ever since.

Sadly, the hardest part for me is that I don’t know for certain what is really behind the challenges he is having.  He became a teenager in October, and now tells me (and almost everyone he meets) that he’s a big guy and not a kid, and does not feel compelled to follow rules that kids need to follow.  While it’s important for Tom & I to discuss rules & expectations with him, I’m not so certain that everyone at Walgreen’s feels the same way.  Let’s just say that puberty is playing a big part in this ugliness, and my guess is that it’s going to get worse before it gets better.

When we meet new people, especially others from the autism community, and I share the fact that 2 of our kids have autism, the first question most people ask is “are they high functioning?”  or “where are they at on the spectrum?”  That’s a hard question to answer, and even though I don’t necessarily like it, I’m guilty of doing it from time to time as well.  It’s just a way to (sometimes) quantify quickly what’s going on.  But I don’t have a good answer for that question when it comes to Elliott.

Ada is high functioning.  She has her challenges to be sure, and as she progresses through the elementary grades, the social stuff is likely to become more difficult for her, and we’re doing  our best to prepare for the coming adventures.  But, she is academically average for First Grade, is very imaginative (she is “Bob the Elf” more often than Ada during December), has friends (mostly boys), and though she benefits from extra help/practice on some of her skills, she is likely not a kid you would pick out of a crowd as being on the autism spectrum the majority of days.

For E, there is no simple answer, and sometimes my answer changes depending on the hour.  He is someone that is noticeably different upon meeting him, but often in the best of ways.  He’s friendly, loves chatting with people, and is extremely outgoing, but also has many difficulties with social boundaries, is not super conversational (very little back & forth with E), and has bouts of anxiety and a wide range of emotions that show up throughout his everyday life.  Some days, he’s really “on” and gets compliments for having great manners, and being super friendly & helpful, and other days, I’m herding a screaming 13-year-old out of the grocery store because I insisted on the “wrong” check-out lane, or he would not give the person in front of us privacy as they try to swipe their credit card.  Does this happen less and less?  Yes, thankfully, but believe me even one episode every few months is not so fun – the attention a 5 or 6 year-old gathers from passers-by having a meltdown at Cub is one thing, but 13 is a completely different ball game.  Imagine that some people just don’t get that checkout line 8 is far superior to line 7, even if there is no line in 7?

So that’s how the autism piece affects my buddy as a now 13-year old.  It’s different than it was when he was younger, and I’m amazed to learn from him how he views the world and his take on social situations, but some days are still much more challenging than others.  That said, the learning disability stuff is what’s really got me down of late.

Here’s the deal – not everyone that has autism has learning disabilities, but Elliott does.  Heck, some people with autism are brilliant, some are academically average, some are severely disabled and everything in-between.  E man has always had “splinter skills” which means his academic strengths and challenges are all over the board and vary dramatically.  He has an amazing memory, has been able to spell well above his grade level for years, has average math abilities (except for word problems) and can read fluently at grade level.  However, his ability to understand what he’s reading – his “reading comprehension” is severely delayed – he’s somewhere around 2nd grade right now.  The effects of this disability are far reaching, as it impacts almost everything in his life and certainly every aspect of middle school.

I think our challenges started when the newness of school wore off, and the expectations/work load started to ramp up.   Sometimes, because his strengths mask his challenges (i.e. fluent reading but complete lack of understanding), it’s hard to know what he’s “getting” and “not getting”.  E has a history of not communicating well when he does not understand something, but acting out in other ways.  This fall, it’s been mostly calling teachers by their first names, reciting personal information about a peer such as his home address, and birthdates of his family members, making friends  very uncomfortable, and his newly learned skill – telling teachers no.  The week prior to Thanksgiving, things had become so challenging for him that he was basically pulled from every class (even his small group special education classes) and was working 1-on-1 with a para-professional the majority of the day.

Ok – truth.  It just kills me when I can’t figure out what’s behind these awful phases – it’s beyond painful as a parent to want to help your kid, and just not know how to do it.  Is it working in small groups in Science that’s setting him off because it’s different?  Is it that math got too hard, and he’d rather bug his friend than admit that he doesn’t get it, and hasn’t for a week?  Is it that American Studies is completely over his head, and he isn’t attending to a lecture format even though he’s not disruptive, and then has no clue what’s going on when we do homework or study for a test?

How much of this is learning disability & failure to communicate and how much is lack of motivation?  He’s famous for telling me “it’s just hard” or “I don’t like history”, to which I reply, in my stern Mom voice, something about how school is his job, and he should not expect it to be easy or to like everything, but he needs to do his best.  He’s a very capable guy when motivated and encouraged, but sometimes the gains come at a painfully slow pace.  Is he just giving up because things feel hard, or is it truly over his head?  I don’t know these answers, and that’s the hard part.  We want to hold the bar high for him, but not so high that he can’t reach for it.  We believe in him, and work hard to help him overcome obstacles big and small, but it’s not always easy to know how to do that.  Sometimes, things start to feel hopeless (like now) and I start to think “this is just not going to happen for him” and then, seemingly out of nowhere, something clicks and he “gets” it.

Lately, he’s been asking me tons of questions about college.  For as long as I can remember, he’s wanted to attend the University of Minnesota and be a Golden Gopher.  When we visit our friends at the University of Minnesota Autism Clinic for our annual neuro-psych evaluations, we can see some dorm buildings from their windows.  He’s long had one picked out that he hopes will someday be his.  These days, when he starts to talk about it, I have to excuse myself, because it’s been making me cry.  While I’ll always be his biggest fan and most ardent supporter, I can’t help but recognize that that dorm room is slipping a little bit more out of reach every day, and it hurts.  It hurts most because it’s his dream, and I hate that his learning disability will likely limit his life in more ways than his autism.  That just sucks, and it’s got me down.

Wow – that’s just too depressing.  Let’s focus on some slightly more positive stuff, shall we?  First, E has an amazing team of educators that care about him, communicate almost daily with us, and are creatively working on ways to increase his ability to participate (at his level) in classes.  We are lucky that E has such a caring, compassionate, and talented team, and we know it.  (I also speculate that E has likely been the cause of more than one staff happy hour – which I fully support and frankly envy).  Also – both Henry & Ada are (knock on wood) doing well in school and beyond.  Henry is speaking in 5th grade, has buddies, practices his trombone in preparation for what will likely be a festive yet fairly painful 5th grade concert tomorrow, and pretends not to enjoy the holiday music dance parties I’ve been throwing when things get too tense around here.  Ada is coming out of her shell more and more at school, has friends, is reading and telling time like a maniac and is once again embracing her imaginary alter-ego “Bob the Elf” almost daily.  Great stuff for 2/3 of the trio.

Yesterday, in my funk, I trudged off to Target with a list that Elliott made for me with a bunch of coupons for things like paper towels, Soft Scrub and M&M’s.  It was freezing cold, and all the holiday crap at Target just made me even more grinchy.  Finally, I found everything, and went to check out.  The young man (not someone we know, as E is usually up on all long-term employees) commented that I had a lot of coupons.  I told him it was because my son, who has autism, enjoys cutting out coupons and matching them up.  He looked at me, with a bright smile, and said “that’s a great hobby – I have some autism too”.  Maybe it was the way he so proudly shared his autism with me, maybe it was his Santa hat, or maybe it was just his sharing a “connection” to my buddy, E, but I left the store with a smile for the first time in a while, and even stopped for a Gingerbread Latte on my way home.

Maybe that young man’s Mom felt hopeless when he was in middle school?  Maybe what seems so insurmountably hard for E this moment won’t in 3 months?  Maybe he will live in that dorm, and maybe he won’t, but will find a place just as cool elsewhere?

No matter what, I don’t think I’ll forget that Target employee anytime soon.  His message of hope came along at just the right time.  And if E gets the chance to meet him, I’ll likely have his home address and birthday on my calendar in no time!  In the meantime, I’ll make Henry listen to more Amy Grant Christmas songs, and Bob the Elf can teach us some awesome dance moves!

Walking Into the Mine Field

Friends – this is likely going to get ugly, but I can’t stop thinking about it, and so I need to go there. I started penning this last night, and to be fair, after 4-hours I threw in the towel. Autism, by nature of being a spectrum, is filled with strong, powerful, divergent viewpoints. No matter what, by choosing to share any viewpoint, you’re going to tick someone off – even if done respectfully or delicately. While the Red Couch is mostly my place to share the joys and challenges we face as a family living with autism, I’m steering into unchartered water a bit because I’m feeling conflicted and uncomfortable and this is where I come to spew. So, I’m throwing caution to the wind and choosing to walk into the minefield. Here we go . . .

Let me set the stage – I’ve had a crap week. Elliott is struggling in middle school – something is up (likely multiple things including puberty, but I digress), and I hate it when I know something is up, but we can’t put our finger on what it is or help him figure it out. Ugh! The second time Elliott called me from school yesterday, he opened our conversation with “Did Ms. K. call you yet today?” Maybe it’s just me, but that sparked my suspicion that he was not able to turn his day around following his morning call after being ousted from Science class. Indeed, she did call me a short time later, which led to a brief face to face where I just fell apart.

To be sure, I didn’t do the positive, ready-to-take-action, collaborative autism Mom community any favors showing up with puffy eyes from crying, not having washed my hair in two days, totally stressed from almost no sleep stemming from worry about said middle schooler, and wearing my ugliest Mom jeans (the only ones that fit) from self-medicating on Peanut Butter M&M’s. Clearly, yesterday I was representing that small, but interesting faction of slightly-off-center-kind-of-whacked out Autism Moms. But at least I remembered to bring chocolate with me – as a general rule, whenever summoned to a teacher meeting, I find it wise to bring some sort of peace offering. That said, I was so scattered and emotional during our discussion that a) her concern has now likely shifted from my kid to my own mental health and b) perhaps the Prozac needs to get bumped up – at least temporarily.

So – here’s where we’re at: I’m going on almost no sleep, my hair is still not clean, I’ve given up jeans entirely for yoga pants, and I’m an emotional wreck still trying to figure out how best to help my middle school kid, while still having a bit of time for his siblings who have their own challenges. Now, add some discord (even more than normal) from the autism community, and voila – I’m a conflicted mess.

Why am I so conflicted? In an effort to save time, first read this November 11th statement from Autism Speaks Founder, Suzanne Wright (linked here): http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action. And then read John Elder Robison’s resignation letter to Autism Speaks (linked here): http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

I’ve been a Volunteer with Autism Speaks for the past 7 years. I have not always agreed with everything they do, but I believe in much of what they stand for. Most of all, serving as a parent volunteer has always felt like a positive way for me to have a focus outside of my home, while still making some small difference for my kids, our family, and our community – that’s important to me. And, let’s be real, it’s nice to share a glass of wine with people who really “get” your life after a committee meeting.

As for Suzanne Wright’s essay – it didn’t work for me. While I get that it hopefully came from a place of compassion and love for her grandson who is severely impacted by autism, it did not fairly represent the “spectrum” of autism, and I think that was a mistake. More and more, it feels like there is a divide forming within the greater autism community between severely impacted/less impacted groups (some say high-functioning/low-functioning), and while this issue is much larger than just Autism Speaks, it is hurting all of us. Suzanne Wright’s words only made that divide grow. Worse, I don’t think using words such as “tragedy” or “burden” help build community or necessarily compel people to take action. They just freak people out – and hurt others. Plus – she forgot that autism does not just affect children. A substantial chunk of that 3 million number is the 5 and over crowd.

For me, John Elder Robison was a dot of glue that sort of held these two camps together within Autism Speaks. He is an adult with Asperger’s, an articulate author/speaker, and someone who truly “gets” neuro-diversity, while at the same time realizing that the way autism impacts his life is very different for individuals who are challenged in almost every way (and everything in between, of course). Autism is not all lollipops and roses and good news stories of tremendous obstacles overcome. He summarizes it perfectly here:

“The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect. Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help. As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.”

I was deeply saddened by his resignation, because it signaled to me that the divide is growing, and that this is no longer just fringe/extreme groups bickering amongst themselves. The mainstream autism community (if there is such a thing) is now engaging in the ugliness, and that saddens me.

More than that, as a parent with 2 of my 3 children on the autism spectrum, I’m confused. Ada, while definitely squarely on the spectrum, is really hanging in there. Her strengths and challenges, while uniquely her own, are very different than her brother’s – her challenges are far fewer. Elliott is a conundrum. He doesn’t fit neatly into either camp. I feel like if the spectrum were a long balance beam, he would be covering the middle 1/3 of it complete with giant flips and dramatic dismounts – venturing now and then to the extreme ends for a visit. The big feelings that people are sharing from both the more impacted/less impacted camps both resonate with me. I’ve read some articulate, passionate, heart-felt points of view from both sides and maybe it’s just all hippyish of me, but I wish we could find ways to support one another more. I think Suzanne Wright’s speech did the opposite of that, and John Elder’s departure from the organization signals to me that the community may become even more polarized.

The autism community is as varied as the spectrum itself, and is filled with people with a variety of viewpoints. Given the vastness of the spectrum and the divergence of personalities involved, we’re never going to be a community of sunshine and rainbows – I get that.

Not everyone has to like Autism Speaks, or support everything they do or say, but I would argue that trying to make positive changes about what’s not working is a better choice for the overall autism community than vilifying them. Do I wish they would consider asking someone on the autism spectrum to join their board of directors? Yes. Do I like getting emails with subject lines that read “Where will your child with autism live when they age out?” No. I’m not a fan of the shock and awe strategy – especially when I think about parents with newly diagnosed preschoolers getting something like that, and how that would have made me feel. But I have shared, and will continue to share with the organization when I feel strongly about something. And I will continue to volunteer my time in hopes of making a difference – if only in my little tiny corner of the world.

My friend, Heather, put it best yesterday when she said “We are all individuals, doing our best. We have to be there for each other”. I think she’s right. I’m sad John Elder left, and I can only hope that his departure will bring about some needed change at Autism Speaks. But at the end of the day, I hope that we can find some common ground as a community. There is so much to be done – we really do need one another. And we can choose to disagree respectfully as well – best done over a glass of wine, don’t you think?

Whew – I’m done. I spewed, I rambled, I let it all out. It felt kind of icky in my brain, and now it doesn’t seem so bad. Thanks for hanging in there with me – I wouldn’t have blamed you for leaving to get a Salty Caramel Mocha. Maybe I will now too. After all, things are starting to look up, even if just a tiny bit. I’ve received no calls from Elliott at school today (knocking on wood) and here is an email that I received this morning from my pal, Mr. Elliott T. Kramer – “Hi It’s nice to see you Love you man”

Love you back, man!

13 Years Ago Today

E is 13!13 years ago today, I became a parent. That feels crazy even writing – man, in some ways it feels like forever, and in some ways I remember it like it was yesterday. As with most things Elliott, his arrival did not go as expected, but was unique and surprising in every way. He came into the world with a bang – quite literally.

A home explosion in our back yard caused by a natural gas leak sent me to the hospital with dangerously high blood pressure. Then, as labor progressed, “Lilly” (we were told we were having a girl), didn’t respond well to Pitocin, and ended up arriving via c-section. The whole process was surreal – nothing seemed to be happening as we had planned or envisioned, and when the Dr. announced “it’s a boy” I was beyond shocked. Tom & I just looked at one another, dazed and confused (even more than normal) and then a nurse handed our son to Tom, and all I can remember is looking at his perfect little face, and his eyes blinking from the light. He was beautiful in every way, with smooth features from having not arrived in the traditional squished up style of typical delivery, but looked just as dazed and confused about what had happened as we did. Thus began our life as a family – it’s been a wild ride ever since . . .

Through the years, I’ve continued to be amazed by how much Elliott has accomplished, and by what still challenges him. There was a time when, following his autism diagnosis, we wondered if we would ever learn what his voice sounded like. Now, I fully admit that there are days I wish he would not use his voice quite so much. Granted, talking and communicating are very different things, but E has the former down pat. While his reading comprehension challenges make a lot of things in his life much more challenging, his memory of dates, numbers, directions, etc., is mind blowing. We have met so many other individuals with autism throughout the years, (and later, added our own Ada to the mix), and it is strikingly true what they say – when you’ve met one person with autism, you’ve met one person with autism.

E has his own strengths and challenges, as does his sister, Ada. They have some things in common, but the way that autism impacts their lives is quite different, as are their personalities. My sister’s son, Xander, who is also on the autism spectrum, is also his own unique guy. While they are first cousins, his strengths and challenges are very different than Elliott’s and Ada’s. It’s kind of cool in some ways to note their similarities and differences as they are part of the same family, but can be really difficult to parent, as strategies that work for E don’t always work for A, etc.

Watching my son grow is amazing, beautiful, painful, and scary. 13 – man, that’s edging ever closer to adulthood, and I’m worried for him as he begins to exert his independence in a world that is not always embracing of “difference” and his social naivativity is bound to create additional challenges for him. I admit that as much as I do my best to think of his personal journey and not compare him to his peers it is sometimes hard. In some ways, he’s like any other 13 year-old, kind of funky, confused in his changing body, wanting to be treated as an older guy, but learning and making mistakes along the way. But, in other ways, he’s not at all a typical kind of guy – he still believes in Santa (& the tooth fairy), struggles with change to the point that rearranging the order of errands or where we are seated in a restaurant can cause a major anxiety attack or an epic meltdown, and he needs a very structured schedule in order to have successful days which takes a great deal of effort and time to plan for. As much as I would do anything to take away the struggles that autism has caused for Elliott (and Ada), it’s not an option. It is as much a part of who they are as their eye color.

There are lots of painful moments that still hit me out of the blue – like last weekend at the end of a difficult day, Henry & Ada were busily entertaining themselves, and E called me to the red couch in tears, asking me why his autism makes leisure skills so hard for him. He asked me what other kids do who are almost 13, and I tried to answer him honestly – movies, books, games, sports, etc. He told me that he was sad because he used to like “Mickey Mouse Club” (which he did even just 3 months ago), but that he felt he was getting a bit too old for it now. I hated that he was so sad, and it hurt to talk about things that just happen so naturally for most kids and are such a struggle for him, but just like anything in life, things can only truly change when you are motivated to make change happen. After chatting it through, he enjoyed a game of Life and Battleship, and ended the evening feeling like he had accomplished something. This growing up business is just painful sometimes.

Most of all, what I am truly proud and excited about is that Elliott is very confident about who he is, and he loves being part of his world. While autism has made many things in his life challenging, I also firmly believe that he has a unique ability to “connect” with people not in spite of his autism, but because of it. He always has – even before he could speak.

To be fair, when you meet Elliott, it takes about 10 seconds to realize that something is different. He has his own style, and for him, the typical shy, awkward teenage stuff does not apply. If someone asks if anyone has questions in a large group setting, E is always going to raise his hand, because he just likes to share. He will approach anyone, anywhere, anytime, and ask questions, get information, or just strike up a conversation. If I mutter to myself in the grocery store wondering where to find the sesame oil, he will already be tracking down an employee to ask before I even finish mumbling. Is it often awkward and a bit funky – sure – but what amazes me is that even as I’m cringing on the inside as he oversteps social boundaries I have for myself, he wins people over. He owns his funkiness, heck, he’s even proud of it, and people often dig him because of it. He has friends at almost every grocery store, hardware store, restaurant and school that I can think of – he’s much more outgoing than his dorky parents. And even when getting off to a rocky start with someone, almost always, he leaves them smiling at the end. He just loves interacting with people, and in his own way, finds his way in the world.

There is much that is scary as I look to the future for Elliott. While he has made incredible progress through the years, his challenges are going to impact his life, and some days I can’t help but think about how. It is my job to worry about helping him learn how to tackle his reading challenges even if bit by bit, and to continue to practice social skills so that he can more accurately express when he thinks a fellow middle school classmate is fun vs. telling them he loves them. Yet, for all that challenges him, and despite my Mom worries about his future, I have such admiration for how he finds his way in this world, how he makes connections with others, and how he never gives up when something is important to him. Most of all, I love to see him genuinely happy and doing his best to “connect” with others in his world, bringing smiles and often a hint of joy to so many people that he encounters – just as he did 13 years ago today . . .