IEPs & One Amazing Girl

Ada date with Mom & Dad

I have many character flaws, and in multiple ways they seem to grow in number and severity as I age.  I’m guessing that somewhere around 40 my “say-it-like-it-is” character flaw just shifted into over-drive, and I know my bluntness is over the top because I’m getting a lot more of the “long-pause wide-eyed, OMG-did-she-just-say-that” looks that people used to give my Grandpa.  Sadly, a small part of me celebrates that – I really don’t mind being a little weird.

Additionally, pile on top of that the whole special needs parent thing – sure it can be rewarding beyond measure, but on a day to day basis it cuts 9/10 of my Minnesota nice time out of any conversation.  Bottom line – I’ve lost touch with too many friends, don’t get to see family as much as I’d like, and am often overwhelmed dealing with one crises or another – usually on very little sleep.  Heck, I’m a regular party!

All this allows for my many flaws to only stand out even more – I speak before I think, I don’t dance around the ugly topics – I just get them out there, I share way too much, don’t care if I’m occasionally inappropriate and I can usually find a way to weave humor into almost any situation because it lightens up the ugly stuff and it’s my coping mechanism.  Let’s just say this adds an interesting dynamic to IEP meetings.

Last week was Ada G’s IEP, and not just any IEP, but a special one including all those fancy assessments they do every 3 years.  Let me own here and now that even the letters IEP make my anxiety rise and cause me to want to yell bad words out loud (butthead is quite popular at our house these days).  Yeah, sure, they are a necessary evil, but it’s not that awesome to get giant reports full of assessments telling you how badly your child sucks at everything as compared to her peers.  No matter how well things may be going (and frankly, things are going pretty well for Ada in the big scheme of things) reading these results is like a giant reminder that she’s never going to be a typical kiddo and that no matter what, autism has a hold on her in ways that will impact her academic performance without special help.  Kind of tears your heart into a million little pieces to think of the thousands of hours of hard work my little girl has put in to come this far, and to still be struggling so mightily in some ways leaves me feeling like we’re failing her.   I hate that.

Some of you Red Couch readers may recall that Ada requested to move from the elementary school her brother Elliott had attended that has an autism program to our neighborhood elementary that Henry attended.  It caused a great deal of angst – not for Ada – but for her crazy pants Mom.  She was as sure as sure could be that the move was the best thing for her, and even as I worried that starting over in a new environment could prove very challenging for her, Tom & I were incredibly proud of her diligence, tenacity and unwavering wish that she should be attending school with other kids from our hood.  I had more than one tearful meeting with the Principal who could not have been more supportive, but who finally told me “Mrs. Kramer, we’d love to have Ada, but you don’t have to make this move if you’re not ready.”  I was grateful for his candor because he put everything in perspective – indeed we did need to make that move because when you have a child with autism who is socially motivated to want to get to know kids from her neighborhood, you don’t deny her because her Mom is not ready.  Instead, Mom upped the Prozac a bit, and Ada started at the neighborhood school in September and has never looked back.  She loves her school, her teacher, and feels strongly connected to her school community.  Win-win.

Then the dreaded IEP notice arrived – the one with the testing results that included words like “severe”, “1%”, (not in a good way 1%) “Does meet criteria for ______”, and other fun things like that.  It’s kind of funky for me because when I first read the report, I thought it sounded like a child with severe impairment – likely needing center based help, as her brother, Elliott does.  It sort of jarred me because in reality, Ada is basically mainstreamed all day, and when she needs extra help, the special education team has been assisting her within the classroom.  Even though I try to prepare myself emotionally for these reports, I must admit that this one caught me off guard.  I really didn’t expect her scores to be so bleak, especially when in so many ways things feel like they’ve gone so well for her this year.  That said, I should know better after all these years that assessments are usually crummier than what you expect, and often quite unexpected (sort of like Henry’s voice these days – could be boy or could be man – it’s always a surprise).

I arrived at the IEP meeting with a peace offering – some type of chocolate is a wise choice with educators in my humble opinion – it doesn’t make up for having to meet with a slightly crazy Mom for an IEP on one of the first warm and sunny days we’ve had since October, but it can’t hurt .  We did introductions, as I had not met all of the special education team members in person, and it helped to have a human connection to the report.  I didn’t say that it was like a giant kick in the gut to read some of the assessment results and numbers, but I felt it.  They probably knew – they have to do this stuff all the time.  I did, however, immediately sense that each person in that room genuinely cared about and wanted to help Ada – and even better, they “get” her, because she’s amazing and fun and sensitive and beautiful and bright and vulnerable and a bit funky all wrapped up into an incredible little girl that has overcome obstacles that at one time felt as tall as the Grand Canyon and that’s so much more important than any crappy assessment could ever capture.  So there.

In the end, I tried to do a lot of listening, learned a lot about what Ada’s current strengths and challenges are, cursed a few times, shared too much and talked about the possibility of needing more Prozac (E’s IEP is in May – best to ramp up the meds now I think).  Heck – I think it’s the first IEP where I didn’t cry.    And in case you were wondering, yes, it is possible to infuse humor even into an IEP – and I consider it a worthwhile challenge.

I walked into that meeting feeling sad and defeated, and I walked out having separated the educators from the awful test scores, and believing that they are going to help Ada navigate her school journey, even when it gets a bit bumpy – ready to fist bump her many accomplishments yet to come.  Sure, I do wish that Ada felt more comfortable unleashing a healthy dose of the “tough broad” persona we see at home when she’s at school (works wonders with the middle school brothers).  But with continued nurturing and encouragement from these educators who truly care about her, I believe her inner “Towanda” will start emerging here and there, and frankly, nothing would please me more.

When I arrived home from the IEP meeting, Ada was in the back yard, playing with a bunch of neighbor kids, laughing and muddy and just being a kid, and it made me smile and cry at the same time because it reminded me how far she’s come.  Was there drama?  Of course.  I believe someone didn’t want to be locked up in jail (aka the playhouse) and they had to work through that before becoming a bunch of interesting African safari animals and later going for a bike ride in the warm sun.

I silently thanked my amazing little girl for reminding me what’s really important.  IEP’s and assessments might be necessary, but bike rides and playing in the yard with friends on an unexpected warm sunny day – that’s something we could only dream about when Ada was diagnosed with autism.  Now, Tom & I get to cheer Ada on as she works towards achieving her own hopes and dreams, and that trumps crummy assessment results any day.  Go Ada G!

It’s All Relative

By some miracle of fate, the laundry piles here on the red couch are minimal today, and I just checked CNN to see what was going on in our world.  Guess what – there is a blizzard on the east coast!  Ok – no disrespect to my friends (& family) from the east – you’ll be shoveling for some time after this one is done, it’s definitely in the “large” category when it comes to blizzards.  Yet, from a Minnesotan standpoint, we silently shake our heads and give an ever so slight sneer (it would be rude to be vocal at all  – that would not be appropriate here in the land of hot dish)  at the 24/7 coverage of an otherwise average large winter blizzard on CNN.  Then again – it’s all relative, isn’t it?  For us, this blizzard business is no big deal, for NYC, it is apparently some sort of catastrophe.  The tables could easily be turned if there were a nationwide shortage of cream of mushroom soup or no butter for sculptures during our beloved state fair – it’s all relative.

I’ve had a major case of the “blahs” lately that has made some of my parenting moments particularly challenging & overwhelming, and has left me questioning some of life’s bigger questions (this is never wise, is it?).  Namely – am I doing what I’m supposed to be doing?  I never envisioned my life like this – am I fulfilled?  Am I making a difference, and parenting by example? Hmmm . . . . some of these keep me awake at night (hard to know if it’s life’s bigger questions or hormones – still, I’m awake) thinking about how I thought by now that I would be back in the work force, at least part-time.  Many of my peers are, as their kiddos with ASD are hanging in there as they get a bit older, and for them I’m truly happy.  Many of these kids I’ve known since they were barely walking, and it’s incredible to see how far they have come – some now starting their journey into high school – it just blows my mind really thinking about the early years and where we all started.  But somehow and somewhere we all took different paths, and for right now, the path that my offspring are on is unpaved and requires a great deal of support to navigate.  I thought and had hoped that would not be the case, and with that comes some occasional sadness that I need to work through.

Just like anything – autism and the way it affects our family is processed in stages for me.  Most of time, I’m fine with it – it just is what it is.  But sometimes, I get sad, wishing our kids didn’t have to deal with the challenges they face, and that our lives would be different.  Not necessarily better – just different.

It hits me at weird times – like when my two middle school boys react in vastly different ways to  a simple question about school (H=amusement, E=anger), and I think to myself, is this a puberty thing, an autism thing, or is this because they have my ½ of my genes, and I’m kind of funky?  Or when Ada has an hour long fit because I didn’t know the difference between a fox and a coyote – whatever! I know this has all got the best of me because my patience has been almost non-existent lately – both at home, and in my volunteer work.  Last week, I was attending a committee meeting with mostly Science/Business types, and I just completely blurted out completely inappropriate comments about cage fighting & the merits of cookies and caffeine on Friday afternoons.  Believe it or not, both of these, while inappropriate, were contextually on topic.  That said, the long, blank stares were an indication that a) it was time to up my vitamin D once again, b) apple does not fall far from the tree and/or c) I’m never going to be asked to serve as a parent representative on any sort of committee again (though even if I’m a bit weird, I have to think some humor is refreshing – or perhaps destiny has played a wise part in keeping me away from such circles?).

E continues to struggle, and here’s the weird thing, he seems a bit depressed right now too.  Not in the traditional depressed sense, but in his own Elliott way.  His whole life, E has been an outgoing kind of guy.  By that I mean E always, always, always wants to be with other people – going somewhere, interacting with people, exploring his world, reaching out to someone.  Since his school challenges have continued to deteriorate, he has pulled inward more and more, and often just wants to spend alone time in his room playing solitaire or doing word finds.  His beautiful bright smile is missing more and more and his confidence that he just naturally wears like his red super skinny jeans (constantly) is now missing most of the time.  He keeps to himself, doesn’t interact with our extended family as much, and frankly is sort of cranky and sullen a lot. How much of this is puberty/teenage stuff, how much is ASD, how much is dealing with the difficulty of middle school and now attending 2 schools?  I don’t know – but I’m worried about him, mostly because he can’t answer these questions, and he’s too close to the situation to recognize it even if he could.

Last night, I was up way too late, looking up possible vacation possibilities and giving up after my exploration of “Dollywood” at 1:00 a.m.  Tears starting running down my cheeks as I thought about my E and the hardships he will face throughout his life because of this crappy genetic lottery named autism, and it made me sad.  Maybe it was the thought of him facing adulthood in a few years and worried about all that stands in his way, maybe it was my funky hormones, or maybe it was the thought of having to watch people eat fried pork rinds at Dollywood, but I was a freaking mess.

And then it hit me.  It’s all relative.  Maybe E will never have an easy time of it at school.  Maybe reading comprehension will continue to be elusive for him for his whole life.  I hope not, but quite possibly, it just will.  Is his life less valuable because he can’t answer “who” “what or “why” questions about stories?  Hell, no!  What’s important to me and to Tom is that he “get” who he is in the scheme of this crazy world, and care about others, and do good deeds and have a good work ethic, and laugh now and then.  And guess what, we’re doing a crappy job of some of those right now because we’re so obsessed with his reading comprehension skills that his self-esteem is suffering.

One thing I love about E is that he completely digs girl power songs.  Last week, I walked by his room and heard him listening to “Wide Open Spaces” by the Dixie Chicks.  I couldn’t help playing that today, and thinking about him.  E needs room to make some big mistakes as well – maybe more room than most.  But when he smiles, it’s hard not to smile with him.

I don’t know if I’m doing what I was meant to do or not, but I do think that together, E & I might be able to help one another work through our respective blahs, and figure out what’s really important in life.  I believe if you’re doing something you’re good at, and if you’re helping someone, it’s hard not to smile . . .

The Eve

Christmas Jams Christmas Eve Ada Rudolph Hair Ada reindeer Mickey'sFriends –

Here we are on the eve of the New Year, filled with possibility and renewed hopes and dreams – heck; why not throw in a pinch of peace of earth and a group hug while we’re at it!

To be fair, my holiday spirit was fairly stunted this year, mostly from the overwhelming school challenges E faced this autumn, which sort of catapulted me into one of those “crap, I truly don’t know if we’re making the right call, maybe I really don’t know how to do this parenting thing, teenagers & ASD don’t mix well, my life is nothing like what I envisioned & what the heck do I do now?” phases this holiday season.

Even holiday cards were overwhelming me.  I finally penned a holiday letter, which was less than my best effort, and it just sat there for over a week as I didn’t have enough holiday spirit to complete the process.  But, as it turns out, who needs holiday spirit when E man is on the job!  He took the holiday card project and made it his own, and just like everything else E, he put his unique twist on it.

His excitement and over-zealousness for leading this project had some unexpected results.  Crazy things like not marking down who he had sent cards to, or forgetting to enclose cards and letters.  One evening, I had that uncomfortable feeling something was not as it should be, so after E retreated to bed, Tom went to the mail box to retrieve the cards E had placed there.  We soon learned that E was not using my holiday card list at all, but had decided to send holiday cards to a variety of staff members from his schools, classmates who don’t particularly adore him, and some names we didn’t recognize at all.  While we were able to rescue these fine folks from receiving our less-than-traditional holiday greeting, who knows what other recipients did receive E greetings?

I do know I have a lot of left over cards and letters, so this project will continue to need a bit of refinement and clearly a pinch more oversight next year, but as with everything, live and learn, right?

So, as we bid adieu to 2014, sip coffee on the red couch before Henry and Ada awaken and we venture off to winter camp to retrieve the E man just in time for our traditional disco bowling/fondue NYE sort-of-extravaganza, here’s hoping 2015 treats you well!  And just in case you got a blank envelope from us or were scratched from the list so that E could greet one of his favorite CVS employees, following is our holiday letter and a few snapshots from our little corner of the world.

_________________________

December 2014

 

Family & Friends –

I’m just going to lay it out there – my jingle bells are not ringing this year, and let’s just say the world is a better place because we don’t have an Elf on a Shelf (can you even imagine!).  While we truly wish everyone a whole bunch of holiday peace, love and all that jazz, I daresay we’ve had a good deal of reindeer excrement sprinkled throughout our 2014 and my holiday spirit is a bit stunted. That said, it’s all about spin, and even the ugly stuff has an element of good – you just have to sift through the broken candy canes to find it sometimes.  Here is our humble attempt to do just that:

The Minnesota weather was so miserable last winter that we decided driving to Arizona for spring break was a good idea.  Yes, we had some moments lacking in family unity (TX is severely lacking in rest stops!), and the boys started wearing deodorant immediately upon our return, but it really was a pretty awesome adventure.  We took turns posing with each new state sign, and the trio got to see a lot of the USA up close and personal.  Sure, E didn’t need to argue with a grandmother in Oklahoma about who had the biggest accent, but our offspring got to check some lifelong goals off their list.  Ada got to touch a cactus, Elliott got to see the Rocky Mountains, and Henry got to go to In & Out Burger.  Best of all, we got to hang with the Kramer family in AZ, and replenish our vitamin D before heading home to the tundra.   Definite 2014 highlight!

Tom Kramer’s pancreas decided to go rogue, and gave him an unexpected week long summer hospital staycation!  Oh sure, a majority of those diagnosed with pancreatitis consume the equivalent of a liter of vodka a day, but even with his staunch Packer fan status, he couldn’t compare!  Lots of creative “lifestyle” questions from the variety of healthcare professionals we got to meet, but in the end, after a week of morphine and a subsequent gallbladder removal, all is right with the world.  Soon, I’ll have to show him some of the text messages he sent during the early days of heavy-duty painkillers – while not quite IRS line-dancing video caliber, they would make the Grinch smile!

Some days we have 3 offspring, and some days we have Elliott, Ada and a boy with the voice of a 30-year-old man.  Ah yes, puberty is in full swing in Eagan, and while it’s true that no one deserves to put up with me as their Mom when the hormones are practically dripping off of them, Henry takes it all in stride.  He’s an introverted middle school guy with a cracking voice, pimples, and a sensitive soul.  Thankfully, he’s learned to use coconut oil (great for skin) and still makes time to watch “Dateline” with his Mom and ask “why is it always the husband?”  Why indeed . . .

Ada loves Goldy Gopher, wearing anything leopard, watching football with her Dad, and being a big 2nd grader!  She advocated for attending our neighborhood school, and despite my anxiety (it’s a Mom thing – I’m on meds) it’s been a rousing success!  She loves her school, adores her teacher and is connecting with some kids in our neighborhood.  She’s still a sassy pants, but with two middle school brothers, well, you might be too!

We started the school year with 3 kids in 3 different schools, but now we have 3 kids in 4 schools.  If you know Elliott, you know he always dares to be different!  In all honesty, this has been a challenging time for our family, but thankfully with the help of a large and caring “village” the E man is already moving in the right direction!  He’s got a bright smile, a zest for life, a passion for Target and a terrific BFF (MN Gov. Mark Dayton).  The E man keeps us on our toes and ensures that our lives are never dull, but no matter what the adventure, he’s up for it!  I dig his charisma.

Our cat, Garfunkel, has the most amazing digestive system on the planet!  Last week, he ate a needle & thread that Henry left out after sewing Goldy’s arm on for Ada, and while surgery looked eminent, he managed to let things pass in a more natural way.  If that’s not a Christmas miracle, well, I don’t know what is!  Simon and Garfunkel are now reunited, fighting about the warm spot in front of the fire.

So there you have it – the good, the bad and the ugly.  Wow – that wasn’t nearly as painful as I thought it would be.  Heck, I might just break out the jingle bells, and drag the family out caroling – we can even alter our song catalog depending on which voice Henry uses!

Holiday peace and love all around!

Tom, Kammy, Elliott, Henry and Ada

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 . . .