Brace Yourself

Friends – there have been a lot of tears shed on the red couch over the past week, and they’re not all mine.  The roller coaster of emotions, challenges, obstacles overcome, big feelings and big deal decisions have been affecting everyone in our family.  While our Siamese cats, Simon & Garfunkel, seem unphased by all the goings on, they do look at us in frustration when big deal conversations on the red couch stand in the way of their feeding times.

Ada G. had an orthodontist appointment last week that didn’t really go as planned.  She’s been going to the same pediatric dental office since she was two, and has always been upbeat and easy going about it.  True, she likes their giant fish tank more so than fluoride treatments, but we’ve never had an issue.  At our last visit, we learned that Ada had her first cavity, and that due to some crowding, she would need to visit the orthodontist to avoid more cavities.

Because I occasionally think I know how to do this autism parenting thing (I don’t know why), I called the orthodontist office, chatted about how Ada has high functioning autism, but that for her, it would likely not really be noticeable except that she tends to be quite quiet and reserved in new situations.  I assured them we’d be on hand to gently help her feel comfortable, and that it would be great if we could come during a relatively quiet time of day.

Considering my little speech, I’m guessing that the office staff must now think I’m more than a pinch delusional!  While Ada is usually very shy and reserved in new situations, she took a very different approach during this appointment, and the 30 minute friendly consultation suddenly become a 2 ½ hour crazy pants, melt-down, no-you-can’t-look-in-my-mouth, disrespectful, angry 8-year old girl bad dream.  Mostly, Tom & I were just in a state of shock!  We’d never seen her behave like this.  Finally, we apologized and went on our way, not really understanding what had happened.

While her behavior was very uncharacteristic, what made me most sad was how she must have been feeling inside her anxiety ridden little body, and it broke my heart.  Not once did she express negative feelings or anxiety about the appointment, she never said anything about not wanting to go, and we had no indication that she felt out of the ordinary.  Sure, without adequate coffee or if a brother is in a particularly rough spot, I may not pick up on some subtle signs, but based on her reaction, this was a big deal to her.  That, or she’s just really angry about people asking her to write what she’s thankful for on a paper turkey that she promptly and ceremoniously ripped up and threw at a random patient.

I think we were event more stunned because Ada has been so “on” lately.  Her transition of elementary schools has gone better than we ever could have hoped.  She adores her teacher, is starting to connect with some new friends, and is hanging in there academically.  We’re so proud of her – that she asked to attend her neighborhood school because she wanted to meet kids from our neighborhood, and advocated for the right to do so was amazing in and of itself.  She knew what she wanted, and she was a woman on a mission.  Even when it was scary and we knew it could have failed miserably, we honored her wishes, (ok, I had 2 anxiety filled meetings with the Principal complete with crying), but ultimately,  it was just meant to be.

Lots of days, Ada’s challenges are not obvious, and sometimes I think I take that for granted.  She certainly has her issues, but they are much more subdued than her brother.  A few weeks into the school year, her case manager called asking to revise her IEP so that she would have no pull-out at all, and I was frankly stunned.  Considering where she’s come from, this is crazy awesome in every way.  We went to her school conference, and rather than an entourage of people, it was just her teacher, Tom & I.  Sure, I still hear all the 2nd grade scuttlebutt about who said a bad word (stupid), or who is having too many unexpected behaviors, but I’m also hearing about who likes to swing, who asked her to hang out at lunch, and who likes Goldy Gopher.  It’s kind of amazing in the best of ways, and our pride for all her hard work in making this possible is overflowing.

A week has passed and I don’t know that we are any closer to determining what happened that day at the orthodontist.  When we ask her about it, she either says “topic change” or suggests that she would like us to bring an iPad next time.  I have a hard time believing this experience was due to lack of an Apple product, but frankly, I’m not sure I’ll ever really know the answer.  I do know that the odds are even in our favor, and that while autism can bring some unwelcome surprises from time to time, her accomplishments are far more remarkable than her challenges.  Frankly, I really like the person she’s evolving into, and genuinely dig her just as she is.  Ok, I wish we didn’t need to chat consistently about the need to consider underwear color when wearing pink pants, but I have faith we can connect those dots soon enough.

H man has not been immune to drama either – which is fairly unusual as he is typically a fly under the radar kind of guy.  Here’s the deal – Henry is introverted among introverts, and his comfort zone has some snug boundaries.  While he’s come a long way since middle school started, and has had to do some ridiculously crazy things like talk to teachers after class or, as he likes to put it “talk about drugs and friendship” – hopefully not in that order, it is still a work in progress as he works though finding himself in the maze of middle school.  That said, when we received an email about the 6th grade party after school last Friday, we told Henry we wanted him to go.  Surprisingly, this didn’t go over well, and we had to work through an emotional evening discussing why Tom & I were so mean that we would make him attend a party where he likely wouldn’t know anyone and he’d have a miserable time.

I couldn’t argue that – Tom & I were horribly mean in this case, and yes, we did buy a wristband so he could eat pizza and popcorn, play games and jump on a giant inflatable with his friends.   Finally, we asked him to do a little perspective taking – if this was the most horrible thing that happened to him all school year, we felt he could deal with our miserable parenting decision.  Shockingly, when he arrived home from the party, he was smiling, all the “guys” had been in attendance, and he ended up having a great time.

Speaking of middle school, we’ve been struggling with how to help E man for some time.  Long story short – things are not working, his anxiety is tremendously elevated, and he has been telling us for some time (in actions rather than words) that something needs to change.

Maybe some of you have the experience of cringing whenever you hear the letters IEP spoken in that order?  Even more crazy, having gone through the process in May, why on earth would anyone do it again before the 12 month deadline?

While we’ve been working with his educational team, doing tours, collecting information from specialists, doctors, and beyond, unlike most situations where my Mom gut just knows intuitively what to do, I’ve really felt lost, and poor Tom could frankly not even fit on the red couch with the rest of us in such a rough place.

We didn’t even know this morning when we arrived for the 7:20 a.m. meeting what the best course of action was, but for once, the energy in that conference room was centered on Elliott’s strengths, and not just his challenges, some of which are significant – just like an IEP should be in my fantasy world.  E man has many fans in his life, and several of his teachers chose to attend – even though they didn’t have to just because they care and want what’s best for him.

When the Tech. Ed. teacher spoke about how successful E is in his extreme pinball class, and said he’d be happy to have E in more than 1 class, I can’t say I didn’t tear up.  When Ms. S. (E’s amazing tutor who works at the school but doesn’t have E on her case load) happily agreed to come and share her perspective about his many capabilities, it was a wonderful reminder that E has an arsenal of tremendously talented, compassionate people in his corner that want the best for him.  It’s kind of empowering and invigorating to know his village is really pulling for him.

It was less successful when we shared with E that he’d be spending part of his day at a different school for Trimester 2, and my heart ached when he was so sad and overwhelmed, likely feeling as if he’s failed at something he wants so desperately to succeed at.  We tried to spin it as a positive, but he’s savvy – he knows what’s working and what’s not, even though he can’t necessarily make the changes he’d like to.

I left even though he was distraught, knowing that I was not able to give him any answers that would soothe him at that point.  A short time later, he called me to say he was not going to follow the new plan, and would instead be homeschooling, and would serve as his own teacher, and then promptly hung up.  The ever patient Ms. K. has since emailed to let me know he’s in a much better place, and instead of saying he won’t do it, he’s now just asking a lot of questions.

In so many ways, I get it.  Change can be really, really hard, and I don’t know for certain that we’re doing the right thing, even with the best of intentions and a lot of love and reflection.  But I believe in him, and I believe that sometimes stepping off the paved path can be a really positive thing – even when it’s muddy and messy.  Just ask Henry . . .

2.2 Miles and Beyond

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

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

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

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

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

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

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

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

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

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

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

 

“Let it Go”

Every year, I tend to ignore the month of September – just kind of pretend it does not happen, and go through the motions until it’s time to flip the calendar and see which family photo will appear in honor of October. Don’t get me wrong – it’s not personal.  I recognize that September has many positive qualities – warm sunny days and crisp evenings, apple picking, Pumpkin Spice lattes, those beautiful orange school buses out and about once again, and a new season of “48 Hours” so Henry can once again ask me “Mom, why is it always the husband?”  All of those things (and so many more) are wonderful, but September 29, 2003 is when Elliott was diagnosed with autism, and even though 11 years have now passed, the pain from that time in our lives resurfaces for me in waves – sometimes as raw and all-consuming as it felt then.

That was a hard lesson for me in the beginning – realizing that accepting first Elliott’s and later Ada’s diagnosis with autism was not a one-time thing. Rather, it kind of ebbs and flows through the different ages and stages of life.  Accepting how autism impacts your child’s life when they are 3 is very different from how life is impacted at 13.  It’s not really better or worse – just different.

Many of my peers who started their parenting journey a few years before me now have teenagers who are starting to drive, getting their first jobs, or even starting college. I genuinely love seeing this stuff on Facebook – and it’s even more fun to see the young folk I’ve known since they were in OshKosh overalls now driving minivans (oh how I’d love for Henry to have a fluorescent green PT Cruiser in a few years).  But I’d be lying if I said seeing that stuff didn’t sting.  Not because I’m not psyched for them, but because for us, autism is the big unknown.

I have no idea if and when Elliott will drive, or what types of employment or educational opportunities lie before him. He’s accomplished some incredible things in his life, but there are lots and lots of things that are just really hard for him.  No doubt, my cup of hope runneth over when it comes to what the trio can accomplish in life.  Our timelines are and will continue to be different from other families, and I’ve made peace with that.  Heck, I will very proudly post “he passed his driving test and here he is driving a crappy pinto” pics of E man – even if he’s 25!  The challenge is that he cares, and that sucks in the most painful ways imaginable.

Reality is that Henry will likely drive before E. Henry will likely have a job before E (if he works up the nerve to speak to new people about something other than technology), and will likely head off to college while E is still in the public school system.  Right now, Ada and Elliott are at the same reading level, and very likely by Christmas she will have left him in the dust.  Worst of all – Elliott knows all of these things, and asks me questions about them more and more.  I hate this – he’s savvy enough to know all these things, and yet not able to change them.  When I’m in my ugly place (September), I feel like it’s a crappy life lesson to learn at 13 – that sometimes really hard work and wanting something bad enough are not always enough.  That no matter what, life is just going to present more challenges for him, and it’s ok to be ticked about that sometimes.

Having your cranky, kind-hearted, hormonally challenged 13 year-old son with autism sit with you on the red couch and cry because he hates how hard his autism makes some things, and wishes we didn’t need to hire someone to hang out with him and help him navigate social situations when he just wants to babysit little kids like all his friends are now doing is the ugliest kind of Mom pain there is (yes, worse than birth).  No matter what, I can’t take his pain away, and even if we tried to completely shelter him that would be doing him a disservice.  He deserves to learn the life lessons we must all learn, even the painful ones – though the Mom in me can’t help but want to soften the blow a bit as it seems like he’s getting kind of bombarded these days.  Adding insult to injury, his bright red super skinny jeans now have a hole in the knee, and we’re having a heck of a time finding a replacement.  Let’s face it – that look works for him and he does pull it off well.

But September is now complete, and just as we did 11 years ago, we will pull together as a family and charge ahead, even when it’s icky and hard. We learned long ago that we’re never going to be that regular, typical family next door, and if that means that hearing from a neighbor at the bus stop that Elliott must be doing well these days because it’s been much quieter in the early morning (even though she lives 2 blocks away), I’m ok with that.  Being regular is overrated – I prefer hanging out with people who have a past (preferably sordid) anyway.  If Tom & I do this parenting thing well, the trio will have many crazy stories to tell, they’ll likely need a good therapist, and they will continue to appreciate an occasional dance party when the going gets tough.

Sure, the big, hard, difficult questions are still lurking out there, but there are also lots of everyday accomplishments that we have to recognize. Such as:

Henry made it through his first middle school crises, and has come out the other side feeling accomplished (ok, not fist bump accomplished, but still). An assignment turned up as “missing” on the on-line grade system, and he had to speak to a teacher (gasp).  Unbeknownst to him, I emailed her to share that he’s more than a little bit painfully introverted, and she was ready for his anxiety ridden visit.  In the end, he had forgotten to write his name on it – whew, crises averted!  Now, if Tom can just heal from gallbladder surgery enough to help the H man design & pitch an egg container off the roof without breaking it, we may get a side hug!

Ada loves her new school, adores her teacher (who is amazing), and is starting to get to know some new kids in her class. Last Friday, we got to attend her school exercise fundraiser, and even when it got really overwhelming for her and she sat on my lap covering her ears, a little boy approached her and asked if she would like to sit by him at lunch.  Kind of made my day that even at her most challenging moment, a friend thought to reach out and let her know he cared.  Ada will have her share of successes and challenges, and I know some of those ugly red couch moments may loom in our future as well, but for now, we’re just happy she made the choice to attend this school, advocated for it, and smiles every day when she walks to the bus excited for whatever new adventures 2nd grade holds.

The E man has not had an easy start this year, and that’s been hard for all of us. His anxiety is elevated to the point that we need to explore some options for him, both medically and educationally.  While it’s difficult to see him struggle so mightily, and not know intuitively how to help him, there is some peace knowing he has an amazing support system of family, educators, specialists, healthcare providers, and even the nice guy who works at CVS who is impressed by E’s couponing abilities surrounding him.  Let’s face it – middle school, hormones and autism are sometimes an ugly combination – we’re not going to figure this one out overnight, but we will just keep trying until we find what works.  Together we will find our way.

E’s favorite song these days is “Let it Go” from the movie “Frozen”.  He tends to play it A LOT – and not always at a volume that pleases his siblings, who are not as fond of the song as he is.  He’s also taken to humming it (not softly) as he’s getting ready for school each morning.  Even though I get where Henry & Ada are coming from, I think the E man is on to something.  September is done – I believe it is time to “Let it Go” and move onward to face whatever adventures await us.  After all – we have more than a few agenda items to tackle – but first and foremost, E & I need to find some super skinny red denim jeans.  Thankfully, Eagan has a new outlet mall . . .

Murky Mumblings from a Middle School Mom

It 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.

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

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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 . . .