Murky Mumblings from a Middle School Mom

It’s takes a special person to be a middle school teacher – don’t you think?  While choosing an educational field in any capacity is something I admire, there is just something about the whole middle school aura that is different & commands a new found level of awe from me.  True – I mean awe in both the “wow” way and the “slightly crazy pants” way, but I digress.

Last year, I wrote more than a few red couch entries about the E man starting middle school – it was a tough transition for him, and frankly left me teetering on the edge of sanity even more than usual.  And while it’s true that having kiddos on the autism spectrum may add an element of parental anxiety to the transition from elementary to middle school, I’m realizing more and more that it’s kind of a funky/cool/scary/fun/bizarre/angst provoking/amazing rite of passage for everyone regardless of a diagnosis.  Huh – who knew?

I remember last year, sitting in a room filled with hundreds of incoming middle school parents as E’s soon-to-be Principal spoke to us about how middle school was just one more step towards independence for our offspring.  Frankly – he did everything right during that presentation, likely from years of experience dealing with parents every bit as nervous/excited/uncomfortable as their kids.  He opened with a photo of himself from his middle school complete with a terry cloth shirt and perfectly feathered 1980’s hair.  But as he delved more and more into the new-found freedom our kids would have, and the educational opportunities that were available to them – I looked around that crowded room and realized that I had never felt more alone.  No matter how positive and optimistic I am about E’s amazing journey thus far, and all that remains possible for him, it was at that moment just utterly heartbreaking for me to hear how vastly different my son was from every other middle school student starting that journey, and the tears just streamed down my cheeks.

But here’s the kicker – this year has not been that much different, and I didn’t see that coming.  Elliott’s younger brother, Henry, starts middle school this year, and while he is not on the autism spectrum, he has his own unique strengths and challenges.   Being a middle school mom could make anyone a bit whacky – but having 2 boys in 2 different middle schools with 2 vastly different personalities – well, I can’t help but feel this could easily be a new Olympic sport.

Sure, I don’t worry about Henry asking random classmates to marry him or emailing school administrators to express love to them because of social skill challenges, but I do worry about him getting lost in the shuffle as a super introverted, painfully shy guy who takes months to get up the courage to ask for help when he needs it.  While I wish with every fiber of my being that E’s reading comprehension difficulties were not so challenging for him, there was an element of security having him start his middle school career last year spending a portion of his day with a special education team that had literally truckloads of data about his strengths and challenges.  In some ways, it feels like I’m sending Henry off to the great unknown, and that’s unnerving in a whole new way.

I realize that there are likely a boatload of parents who are better at this process than I am.  Heck, there may be parents who don’t even need medication! (we’re likely never going to be friends).  But I’m also guessing that I’m not alone, and that while the struggles I’m facing may be unique to our little corner of the world, we all have our share of difficulties – some more visible than others.  Bottom line – this growing up business is hard – for kids and for parents.

This year, we’ll have 3 kids in 3 different schools.  That’s crazy!  As someone who graduated with a class size of 50 in a small farming community in southern MN, I’m overwhelmed just reading Elliott and Henry’s daily schedules – blue days and green days, or green days and white days, phy-ed uniforms in one school, not in the other, Flex Time or Panther Time – no “unnatural” hair color in one school, no sleeveless shirts or droopy pants in the other – ugh!  Gratefully, the only one who would try to push the envelope in any of these areas is Ada, and as a 2nd grader none of these rules yet apply to her – who knows, maybe they will when she is done with them?  And as Ada (also on the autism spectrum) is moving from the only school she’s ever known to our local community school, where Henry attended elementary – don’t think I’m not experiencing a mountain of anxiety about that situation as well – but I can only process so much craziness at once, so let’s save that for another day, shall we?

In spite of all the big feelings and excitement and anxiety and apprehension I have about the boys getting off to a good start this year, there are some signs of positivity and hope that I want to share.

Henry had a lot of challenges learning how to open his locker at his school “Jamboree”, but when his Panther Time (am I ever going to get used to that name?) teacher called us about updates this week, and I shared Henry’s challenges, she asked to meet us that afternoon, and experienced the same problems with his combination lock that we did – sweet vindication!  Best of all, she’s speaking to the custodians about it, introduced Henry to a teacher nearby his locker in case of trouble, and then took us on a tour of all his classrooms just to be nice.  She immediately recognized that he was a bit of an introvert, and said something like “I can tell you’re kind of a quiet guy, and that’s ok because I’m outgoing enough for both of us.”  He left that day with a pinch more confidence, a small swagger in his step and a smile that conveyed he was ready for her to shake him out of his comfort zone (just a little).

Then, we attended a 7th grade back-to-school night at E’s school.  After the challenges he faced last year, I was ready to once again feel down about how different E’s experience was going to be from that of his peers.  But this year, I had a different kind of unexpected reaction thanks to my pal, E, who always finds new ways to surprise us.  For as this large crowd of people filed into the school auditorium, 99% of whom Tom & I didn’t know, E was chatting and high-fiving more than a few teachers and administrators, sharing smiles and well wishes the whole way.  I’m not sure why that surprised me, as despite him attending a large school, whenever I would pick him up early for an appointment last year, nearly every custodian, office personnel, teacher or lunch room attendant would greet him by name.  No doubt, E knows how to turn on the charm, has a bright smile to share, and has oodles more self-confidence about who he is than I ever did in middle school!  He’s forged these connections in his own slightly funky/unique way and feels a sense of pride and belonging to his school – maybe in a way I hadn’t realized until that very moment.  Bottom line – he spends more time thinking about what he’s good at rather than what is crazy difficult for him.

As each group of educators got up to share something about their respective subjects, I found myself excited to learn a little bit about who E would get to work with, and having him tell me who was funny and who was really “tough” according to E.

Some time ago, Elliott’s amazing tutor, Ms. S, (a middle school teacher by day) shared with me that she felt lots of middle school teachers have retained a middle school sense of humor in order to do what they do effectively.  I must admit, that was what I’ll remember most about 7th grade back-to-school night – the funky, slightly off-center sense of humor that many of the teachers shared – it was calming and soothing – for the students and the parents.  Even Dr. J. – the Principal – as even though he seemed the most buttoned up of the bunch, all you had to do was imagine him in his terry cloth shirt to know that he likely still laughs inappropriately whenever he hears the word Uranus.

Maybe the most valuable lesson I’ve learned in all of this is that growing up is tough stuff for all of us, and perhaps the best thing we can do is try to retain some tiny piece of yourself firmly grounded in middle school (the funky humor part, not necessarily the awkward hormonal part).  While autism, combination locks and sassy pants 2nd graders who insist upon carrying a small stuffed gopher everywhere may be keeping me awake at night, we all face our share of challenges.  Maybe, by allowing ourselves to find some element of humor in even the ugliest of situations, it will lighten the load just enough.

Who knows, had autism never become part of my life, maybe I would have become a middle school teacher?  I kind of appreciate people who choose to hang out with young folk who are literally swimming in hormones, explore exceptionally unfortunate hair styles  and tend to learn in a very slow manner how much man smelling spray is too much.  After all, I did get a degree in Social Studies a lot of years ago, and I can’t help but laugh out loud at the state fair when we stop by the pig barn and notice that the biggest boar in MN is clearly not neutered.  And whether it’s appropriate or not, I’ll consider it a success if my middle school guys know all their planets, but smile a little whenever they say Uranus . . .

Celebrating the Small Stuff

E's room sign

Friends – I made a mistake.  Last week, something kind of great happened, and to encourage myself to make the time to sit down and write about here on my red couch, I alluded to it in a Facebook status.  This was beyond unwise for a host of reasons:

  1. It’s unwise to commit to something you are not 100% certain you can follow-through with. This is something I’ve learned through my years of being an ABA parent (ok 90% – let’s get real).
  2. The summer has been crazy in general, and even though I’ve worked hard to create balance for each of the children in regards to activity/down-time, it still leaves me sweating, with unfortunate hair, driving all over Eagan and beyond taking someone-somewhere. In short, my “me” time is minimal.
  3. Making a bone-head statement like that on social media is naturally why I developed one of the worst 2-day migraines of my life followed by a weekend filled with visiting family and a fun, but full schedule.

Despite my foolishness, I’m still going to share because it’s been a bit of an “off” summer, and we must celebrate the sweet stuff when we can – don’t you think?

Here’s the scoop – odds are that by having 3 offspring, someone is going to be in a pretty good place at any given time.  Additionally, someone is likely to be experiencing a rough patch of some sort – it’s just part of growing up, and a natural part of life.  Having 2/3 of your brood on the autism spectrum can make for more dramatic peaks and valleys, but you get the idea.

That said, for some reason, this has been a funky summer for everyone as each member of the trio wrestles with their own unique issues this summer.

E man has just been off for the past month or so.  Nothing horrible, but just a hint of funky.  He’s exceptionally moody, has been flying off the handle about things that haven’t bothered him in years, and is especially challenged by a host of vocal and motor tics (i.e. interesting loud random sounds, lots of clapping, facial tensing, and occasional goofy laughing at inappropriate moments).  This is something that goes in phases for him, and has for many years.  He knows it now brings unwanted attention to him out in public, and I believe tries his best to control it when he can, which is not always possible.  I wish it were easier for him, and even more,  I wish I understood why at times this is not an issue for months, and then suddenly it seems to occupy so much of his day.  Being 13 is awkward anyway – this doesn’t make it easier.

Henry is in transition – in so many ways.  He’s done with elementary school, preparing for middle school in the fall, growing so fast that I can’t keep enough food in the house or pants that reach below mid-calf most of the time.  His core group of “Minecraft” adoring buddies is in a bit of a funky place right now, and we’re encouraging him to expand his horizons beyond his love of technology (not easy when lots of middle school guys love sports and you have your Mom’s crummy athletic genes).  He’s just “off” – trying to find himself, being snarky while still enjoying “Frozen” now and then with his little sister, and remembering to wear deodorant in moderation.  It’s just a summer of transitions for the H man, and that’s not always an easy place to be.

Ada will be moving from the school she has attended since Kindergarten to our home school for her 2nd grade year.  It was her choice, as her social motivation to be around other kids from our neighborhood was reason enough to encourage us to let her give it a try.  This school will not have a formal autism program, which she has not needed or utilized since she started Kindergarten but always knowing it was there was great comfort for us, and leaves me feeling a bit nervous and uncertain as the social demands of school begin to ramp up in 2nd grade and beyond.  Additionally, whenever Ada and Elliott spend lots of time together, Ada begins to mimic some of E’s behaviors, so the clapping, noises, faces are in full swing around our place.  I wish it didn’t bother me so much – but it does simply because that’s never been Ada’s issue – and her ability to study the behavior of her peers and emulate them is fantabulous – if the peers were not her brother experiencing his own challenging moments.  Ugh.

So everyone has been a bit off, and while we do our best to try new, fun family activities, take advantage of the free time we don’t often get, and explore our community to unearth new ways to have fun in our own interesting way, it’s just not been super amazing or a summer to remember in any way  – yet.

But last week, something really terrific happened that I didn’t see coming, and it was enough to make me reflect on celebrating the small stuff – especially in light of the kind of “blah” place everyone has been in, and I think it’s worth sharing – even if it’s just to remind me to reflect on the small moments of good that surprise me here and there.  Here goes.

E had perhaps the busiest week of his summer last week.  His summer school program runs from 8-12 each day, he does his literacy tutoring with the amazing Ms. S. twice a week at our library, and then last week, he enrolled in a really cool 1 week afternoon ASD Sports Camp that he’s participated in for the past 2 summers and loved.  Coach K is amazing, motivating, encouraging, and overall fabulous, and despite whatever else E is going through, this is always a highlight of his summer.

Monday, after a so-so day at summer school, I dropped him off at sports camp, and when I returned, Coach K was high-fiving the E man, telling him how proud he was that E was open (without complaint or anxiety) to trying every new game that was introduced, waited his turn patiently and was a team player.  He then shared with me that unlike previous years, E didn’t take more than one bathroom break (this is his escape strategy when he doesn’t like something), and was all around awesome.  I was thrilled for E, mostly because I just want him to have the experience of feeling really happy about being part of something he truly enjoys, especially something that involves hanging out with his peers in a super positive way.  And while that alone would have been enough of a “something to celebrate” experience – it gets better.

On Wednesday, following another less than awesome morning at summer school, I dropped him off at Sports Camp again – this time feeling a bit of sadness – both because E was just a mess of noises and clapping and for Coach K who so positively helps E and every other camper through the good days and beyond.  When I got back at 3 to pick him up, I noticed him horsing around with the automatic doors (not a huge surprise) and chatting it up with someone else’s Mom.  I reminded him to go in and get his water bottle and waited patiently for his return.  Suddenly, said Mom approached me and said “are you Elliott’s Mom”?  I thought about my options, and realized imagining running away was just my fight or flight instinct kicking in – especially given my down mood that afternoon, and instead smiled and said “yes, I am”.  She proceeded to share with me that her middle schooler was enrolled in the sport camp for the 1st time, and had been talking non-stop about a really great friend he’d made at camp – named Elliott.  She said Steve (not his real name as I didn’t ask permission) would love to invite E man over for guy hang-out time and she wondered if E might be interested?

I kind of just looked at her, with my mouth hanging open and a delayed reaction that was a pinch more than slightly awkward (not helpful to E in any way I’m sure).  While I had been prepared for something entirely different (i.e. would Elliott please stop asking Steve to marry him, or asking for his social security number, etc.) I was simply stunned, and the tears just started running down my cheeks.  She continued by sharing that Steve has never had much luck making friends, but for some reason felt an immediate connection to E, and would love permission to phone E and set up a time to hang out.  I finally got myself together enough to apologize for my emotional reaction, and she interrupted me to just say “I get it”.  I kind of love that about Autism Moms – there are certain things that just don’t need to be said – and frankly no time to say them as by this time both E and Steve were horsing around with the automatic doors.  We exchanged phone numbers, and the guys are busy setting up a time to hang out in their own way and with their own personal spin which is beyond awesome in every way, and makes so much of the “offness” of this summer worth it and more.

Don’t you just love it when awesomeness just sneaks up on you and shakes you out of a funk – unless it’s followed by a ridiculous teasing FB status update and a migraine, but I digress . . .

E’s Excellent Adventure!

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Friends – if you have had the chance to stop by the Red Couch at some point during the past year, you are likely already aware that the E man has had his share of challenges during his first year of middle school.  To be perfectly blunt – there has been a lot of ugliness throughout this school year now and then sprinkled with a bit of amazingness.  Maybe you are wondering why middle school would be anything other than ugly for anyone?   I’ll give you that – it’s not often anyone’s finest hour.  Puberty, hormones, new found freedom and responsibilities, voices changing, the scent of Axe Body Spray pungently drifting through the locker areas – talk about your good times!  Now, throw a medium sized dollop of autism on top of all that and things get even more interesting.

I’m going to own straight up that I struggle with a fair amount of anxiety in my life as a general rule.  It’s something I must continuly work on, accept about myself, and treat via my health care provider – aka medication.  E & I have this in common – we wear our anxiety outwardly, even when we try not to.  (Can you say apple don’t fall far?)   I think it’s fair to say that middle school has given both E & I ample practice with facing anxiety straight on – and I’m excited to share with you that there is light at the end of the tunnel.

First the ugly stuff.

E has a reading comprehension disability that makes almost every aspect of school difficult.  While he can decode at an age appropriate level, he usually can’t remember the information presented for more than a few sentences.  We’ve been working his whole life to help him make gains with these skills, and he is progressing but with more turtle and less hare.  As he’s gotten older, he’s become embarrased about this skill deficit, and often tears up and asks us why it’s so hard for him.  To see him struggle, want so badly to make progress, and have it be so elusive is the worst kind of pain imaginable.  My Mom guilt kicks into high gear, wishing I knew how to help him and I spend many sleepless nights trying to research new strategies.

 

Middle school has presented new challenges in this department because almost every course is designed around reading to acquire information.  E spends portions of his day in a special education classroom, and also has courses with his mainstream peers, which he loves.  Once the honeymoon phase wore off last fall, and the real academic guts emerged, I think he sort of shut down for a time, overwhelmed in ways he could not even fully grasp and feeling embarrased about it.  The hormones floating around in his 13-year-old body may not have helped either, but that you probably already guessed.

Around the holiday break time, Tom & I were having serious discussions about whether this was really the best place for him.  Not for lack of effort (both his and the terrific team of educators he gets to work with), but because he was just over his head in every way, his self esteem battered and his spirit wounded.  Of course, as it does in the world of autism, much of this came out in the form of challenging behavior.  Calling teachers by their 1st names, telling peers (mostly guys) that he loved them just so they would freak out, and refusing to do what was asked of him.  It was not an awesome time for any of us.

So, has everything miraculously turned around since then?  Well, no, not necessarily.  But maybe something ever better has happened – E believes in himself not despite his challenges, but in unison with them.

Somewhere around January/February, a subtle shift happened.  He sort of suddenly “got” that fine line between being properly challenged and being completely overwhelmed and was figuring out the difference.  He began accepting some of his challenges in new ways – like asking me to read outloud to him because it was easier for him to understand and he found he enjoyed stories more.  Or when I would ask who he sat with at lunch, worried about friendship stuff, he would tell me “it’s not my deal to sit with the same people everyday and that’s just the way I am” or “Mom, you don’t always need to know who you sit with, I just like to listen to different people everyday”.

 

Soon, he started watching the morning news, and asking questions about goings on in the world, sometimes doing research on the iPad to learn more about things.  Best of all, he was just relaxed in his own skin in a way we had never seen, and was such a joy to be with in an easy, natural way.

This kind of makes all the ugly days worth it and more because he’s done all this on his own.  He has started to realize his worth and understand that his strengths are numerous, unique and the very best part of who he is.  All in all – he’s not as afraid of his flaws because he’s allowed himself to see his strengths.

Earlier this week, he brought home an application form for the Yearbook Staff.  He kind of loves to fill out forms of any kind, so at first, when he told me he wanted to apply, I thought it was more about the form than anything.  All 3 kids had homework that afternoon, so I was going from 1st grade reading to 5th grade math (ick) to E’s form and back again.  He ran a few of his answers by me, and I had to smile as his personal style shined through in ways I’m guessing the Yearbook Advisors don’t always see when they read these applications.  One question asked about his flexibility and attention to detail and his answer said something to the effect of “pretty good when I take my medicine”.  It was pure E and pure awesome – and frankly, I didn’t even think he fully completed the form and forgot about it – until yesterday.

I picked him up after school, a rocket in one hand and a letter in the other.  His teacher had emailed me to say that his class had been outside shooting off the rockets they built in tech ed and sent a few fun pics from the day so I was expecting him to chat about it.  He told me he had a great day, and that he wanted me to read an important letter but not until I was done driving for safety reasons (ever the rule follower).  When we got into the house, he handed me the paper, and in bold letters at the top it read “Welcome to the 2014-2015 Yearbook Staff!”  Holy Crap – he did it!

We delivered some treats to E’s school this morning in thanks for all they do through thick and thin.  His teacher was beyond proud of his achievement, and because she’s awesome had already spoken to the Advisors about how to make E’s tenure on Yearbook Staff successful and fun.  We agreed that the first meeting next week would likely play to his strengths – sorting and distributing yearbooks.  While I can’t say this meeting will be without challenge, it would be difficult to find anyone with a better grasp of every conceivable nook and cranny of that school.  Frankly, Elliott oozes Wildcat pride and I’m very excited to see the middle school yearbook next year!

I’m grateful that E has faced difficulty head-on and come out even stronger this first year of middle school.  He’s reminded me of something important that I’ll try to remember during the difficult days still to come – this journey will not always be easy, but it will always be remarkable.

Oh – there’s one more valuable lesson E has acquired as a now middle school veteran and it’s an important one – there are far superior brands of body wash than Axe.  Peace out.

May Ramblings from a Crazy Autism Mom

Yesterday, something kind of crazy happened.  E man slept in, and we had to wake him in order to get to school on time.  Let me be candid – this is unheard of.  Unless there is an illness – & I’m not talking head cold – this just doesn’t happen.  Since around the age of 5, E has been consistently rising at 5:30-6 a.m.  Yes, it’s a bit crazy early, but it’s kind of his deal, so we’ve just come to accept it, and have found ways to work with it.

This morning, he told us he woke at 3:50, and has been up since.  He had that look on his face that immediately tells me something is not ok.  I don’t know how else to describe it except to say that he looks kind of drunk – laughing inappropriately, clapping, taking his sister’s pink blanket from her room and taunting her with it until she screams, etc.  It’s just something that has popped up here and there over the years, and it’s a little like a temporary loss of about 10 years of development.  Additionally – let me add that all this fun occurred before coffee, fyi.

I don’t know why, but the poor guy has been all over the board lately – in general, throughout his 13 years, we’ve sort of come to expect a variety of phases.  While some are not so easy to help him work through, we’ve learned that often the ugly stuff leads to really awesome periods of progress.  This doesn’t necessarily make it any easier during the tough stuff, but we can often look back and realize a pattern.  That said, typically the phases last weeks or months – not crazy random days of amazingness followed by visits from stims and behaviors we haven’t seen in years.  Usually, March is fairly unpleasant in our little corner of the world, but for some reason, it wasn’t this year, and May seems to be the funky month.  Poor E’s spirit seems a bit tattered right now and I have to wonder if he’s as confused by everything as we are.

There could be a million reasons for this.  It could be seasonal allergies – which he struggles with on and off during the spring months every year.  Maybe it’s a growth spurt and he’s just feeling funky in general.  It could be that his first year of middle school is coming to a close, and he’s processing in his own unique way the many triumphs and struggles he’s experienced this year.  Maybe it’s none of the above and there is no explanation – which sucks, but happens in the world of autism – maybe to keep us on our toes.  No matter what, it kind of tears me up inside.  I know – I get that every kid goes through peaks and valleys and that E is no different in that respect.  But his peaks and valleys are quite a bit steeper than most, and he’s unable to communicate with us in a meaningful back and forth way what’s going on.  It’s just such a hard thing to see my kid struggle, not know why, and not know how to help him.  It would be so helpful if we could just find a way to add a few tools to his toolbox at times like this.

He’s not alone.  While E’s challenging phases are usually a bit more visible than for his siblings, Henry & Ada are dealing with their own funkiness right now as well.

Case in point – last week, as we were going about our regular morning routines, I was jolted back into autism reality by a braid.  It started so innocently – I asked Ada if I could try braiding her hair, as I’m a bit of a loser in the creative hair department.  A pinch of background here – Ada previously struggled a great deal with adapting to change especially when it came to varying her clothing choices, and wearing anything but a ponytail – and I mean a ponytail directly in the center of her head – not too high, not too low (yes, this matters).  It got serious enough that we had a therapy program in place to help her work through these challenges – this involved multiple wardrobe changes and a variety of hair styles several times a day.  At first, there was a great deal of hissing and scowling, but before long, she wanted her own triple barrel curling iron and was posing as her sassy self for pics.  It’s been over a year since we worked on that program, but suffice it to say, I’m realizing my lack of practicing creative hair techniques has not been helpful for the 1st grader.

After an hour long melt-down complete with both of us in tears, I finally got her to school.  We were late, so I did my best to give Mrs. E the 1-minute version of events, and assured her that I don’t typically take my offspring out and about with ½ braided hair that looked as if she’d been through Hurricane Katrina.   It just hurt to see her struggle with something I really felt was in her past, and reminded me not to take all her hard work and progress for granted because it was a long, sometimes difficult but amazing journey to get her to where she is now.

And then there’s the middle man – Henry.  Growing up between a brother and a sister with autism has given him a unique prospective, and me constant guilt.  Does he get enough attention?  When his siblings are struggling, do we do right by him?  Is he destined to hate us and move as far away as he can get at 18?  Are we allowing him too much screen time?  Suffice it to say if for some reason I’m not feeling guilt and angst about a myriad of things – then without a doubt I am when it comes to Henry.  On top of that he’s quiet, shy and introverted.  He’d rather avoid the limelight whenever possible, and now that he’s edging closer to his teenage years, he doesn’t want his sensitive side to show through.  He does, however, watch “Frozen” with Ada and tell us he’s just doing her a favor – but I digress.

Over the years, he’s connected with a great group of guys from school, and because his life has always been a bit more sheltered than most, this has been a terrific outlet for him.  Their current passion is playing Minecraft together, and unfortunately, as almost middle-school-guys do, they are experiencing a bit of drama of late.  I sensed something was off when he didn’t want to immediately get on-line with the guys after completing his homework last week – this is highly unusual.  I  don’t know the full extent of this saga, but I did have margarita’s with a fellow group members Mom.  She filled in some of the blanks, and Henry is starting to share bits and pieces with us as well.

This is a tough one to navigate.  Henry does not have autism, but I do believe that growing up alongside siblings who struggle with social interactions and relationships has not given him as much practice & experience in these situations as his peers.  He’s just not as socially savvy as most, and frankly, these are not easy lessons to learn – especially for adolescents.  It’s a fine line balancing his need for independence and privacy while still supporting him through the difficult stuff.  I tried connecting with him by sharing that Tom & I had some similar experiences in middle school.  Ok – not with Minecraft – but I distinctly remember an argument about whether Shaun Cassidy or Rick Springfield was more awesome, and believe me, it was U-G-L-Y!  Henry was completely unimpressed.

Just as it is with his siblings – it’s hard to see him hurting, even as he learns some valuable lessons.

So – there you have it.  This is not earth shattering stuff, but everyone has just been “off” around here.  Even if it’s a necessary and natural part of development, watching your kids stumble, fall and have to get back up again is never easy – autism or otherwise.  I’d prefer they would work through these things one at a time rather than the trifecta approach, but it is what it is, and no matter what, we’re in this together.

Still – there is hope.  Even though E was up crazy early today, he didn’t wake anyone else up, watched the morning news, and shared what he had learned about a tornado story that had aired.  Holy crazy awesome!  That he was listening to news reports and recalling them on his own is beyond fabulous & entirely new.  Then, just a few minutes ago, he came down to get a book about states that he wanted to read.  Honestly – who is this guy?  Glad to have the drunk-like guy gone, and the E man back!

Ada had that horrible braid day, and then came home and told me that even though she thought having the braid at school would be really hard, it actually wasn’t.    She also asked to try a side braid next.  Either she is fascinated with the 1980’s or remembered that she in fact can work through difficult changes, and come out stronger for having tried.

And H man has been agreeing to side leaning hugs (kind of like the Duggar’s, but way more awesome) despite his adolescent coolness.  He chatted with me about how to forgive friends who make mistakes and how to figure out who is a true friend.  Kind of heady stuff for 11.  After all that, we shared some cheez-its and he showed me lots of fascinating clips of “vintage” video games that he is currently passionate about.

There is always hope . . .

 

The Look

Yesterday, something happened that I just can’t get out of my head.  It wasn’t earth shattering and overall, it was the most ordinary of days, but I’m still thinking about it today, so I feel the need to share it here on the Red Couch.

It started out just like every other day – kid drop off at school, then a quick trip to the Doctor’s office for a blood sample to test my vitamin D levels (huh – imagine that – low Vitamin D in Minnesota), and then I had to pop into the grocery store as the trio had requested cheeseburgers.  As spring has (fingers crossed) finally sprung here in MN, and we had a crazy busy evening of activities, I was game for grilling their requested menu, and stopped at the store to pick up the few items we needed, which, as luck would have it, were few in number but spaced all over the store.  It was mid-morning on Tuesday, which is kind of a perfect time to go to a grocery store, and as I scrambled up and down the various isles, I ran into the same 3 shoppers more than a few times.  We did the Minnesota nice smile the first 3 times, and then frankly it got a little awkward, but I digress.

It didn’t take long for me to note that there was 1 shopper in the store who had a very frustrated toddler.  Having traveled that path a few years ago – it registered for me as empathy for a parent likely trying to finish shopping close to a young person’s preferred nap time.  And as I ran from baby carrots to buns – all the way across the store, I never actually saw the sad toddler, but I noticed the volume level ramping up in a big way, and now accompanied by some sort of serious pounding which kind of sounded like a hammer.  By now, it was fairly impossible not to notice the situation from all corners of the store and my heart went out to this over-the-edge toddler and his or her parent, who I imagined might be ready to throw in the towel on this unsuccessful shopping trip.  Now in the check-out line, the pounding sound got closer and had become so loud, accompanied by the screaming, that I couldn’t help but turn in their direction as they came around the corner spontaneously out of concern for their safety.

And that’s when I saw them – a young man and his Mom, making their way through the store.  He was likely in the 10-12ish age range, and was not crying at all, but vocalizing in a fairly loud way, jumping & waving his arms in the air, all the while holding a clipboard that contained a list, and occasionally whapping it against the cart – which explained the hammer like noise.  I smiled at them as they passed, crisscrossing the store on their own journey to complete their list, and realized how easy it is to make assumptions about others, and how I hadn’t even considered this could be anything but an overly-tired toddler.

I wanted to explain myself to her, to reach out and let her know that we were members of the same club – parents with special-needs children, and that I noted how positive and calm she was even as her son struggled.  That I’ve been shopping before with a frustrated tween carrying a clipboard, and lived through meltdowns and rage filled outbursts over things like choosing the wrong check-out line.  That I get why she chose to shop on Tuesday morning when only 3 people would be in the store, and that whether her guy was frustrated, communicating in his own personal style and/or ticked that his Mom didn’t want to buy him Lucky Charms, that I noticed her encouraging him, smiling at him and looking at him with eyes filled with love, strength and hope.

I drove home thinking about them, hoping that they had experienced some moments of success and/or progress on whatever goals they were working on that day.  And I also thought about being a Mom of 3, 2 with ASD, and not considering, even for a split second, that the loud noises I heard in that grocery store could be anything but a frustrated toddler, and how I felt like a jerk for being so assumptive.

How many times have I received the nasty looks from other shoppers when E has freaked out in the check-out line about whether we use self-checkout or that I ask him to bag instead of stare at the register?  How many sneers when Ada would dangerously attempt to perch on the edge of the cart or jump off the bags of salt pellets just for fun?  Sometimes, they are bold enough to say out loud that they think I’m a crappy parent, but most of the time, it’s in the eyes – the all-knowing “this parent clearly doesn’t have rules or accountability and her kid is proof” look when I guide a screaming-12-year-old out of the store. It’s easy to be assumptive – my kids don’t look different, and there are crappy parents in the world.  Heck – I really may be a crappy parent, but if so, I’m a crappy parent with rules and accountability!  In the end, I realized yesterday that I’m no different than my sneering friends, and clearly I have plenty of room for growth in this department.  So even though it’s April, and I feel about as aware and accepting of autism as can be, my grocery store experience reminded me what it’s like to sit on the other side of the table.

Last night, we all got to attend a presentation about making everyday tasks more fun for your family.  All 3 of our kiddos asked for a clipboard to write on, and for some reason, that made me smile . . .

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 . . .

Deeply Honored

Wow – quite an honor to have a blurb from the Red Couch appear in “The Atlantic“!  Here’s a link to James Hamblin’s story “What It’s Like on the Autism Spectrum” – http://www.theatlantic.com/health/archive/2014/03/what-its-like-on-the-autism-spectrum/284268/#disqus_thread

And for the record – E man still loves a good cracker!