Random Acts of Kindness – or Else!

Summer is soon upon us, and while I’ve always had a healthy respect for the fantabulous educators that work with our offspring, let’s get real, I don’t celebrate summer break as much as they do.  We may both be doing countdowns, but only one of us is doing this in celebratory spirit (hint – it’s not me).

It’s not that I don’t dig having the trio around more, doing things we don’t normally have the chance to do, and/or hanging out in our pj’s until mid-morning (who am I kidding – yoga pants work all day, right?) it’s more about organizing it all and making sure we have a workable plan in place for everyone.

It’s a delicate balance making sure everyone has enough to do – but not so much that things get crazy.  Not to mention since I’m the one getting everyone everywhere, making sure I can actually accomplish that for each member of the trio without double booking myself on opposite ends of town and without adequate coffee – as that would be just plain ugly.

More importantly, each of our kiddos is very different, and has different needs/styles.  Given the chance, Henry would not leave his room at all during the summer except to consume entire jars of peanut butter leaving dirty spoons in his path or to alert us with any internet connection issues.  Ada needs a nice balance of hanging out at home and having free time with the neighborhood kids along with some learning activities (she’s the easy one in this department).  Elliott needs to be on the go at all times, and his day needs to be highly organized, structured, and planned in advance.  He needs lots of learning activities but with multiple errands/shopping trips/bike rides in between to break up his day.  He does not do well “hanging-out” – there is no such thing for him.  No, I’m not exaggerating – at all!

And so, I’ve been thinking about what’s going to work for each person, and what types of things we can try to tackle together as a group.  Goals are good – don’t you think?  If you don’t start the summer with any objective(s) in mind – things have the potential to get really ugly before the backpacks are even cleaned out!

Adding to my need to get summer plans in place is the realization that in the midst of doing everything we’ve done through the years to help the kiddos due to autism, we’ve done a crummy job of helping instill community spirit and especially for E, an understanding of any special needs besides autism.  Man, this is not easy to own, and if it weren’t my own kid I would find a pinch of inappropriate humor in that the teenager with ASD lacks compassion for anyone with needs different than his own (and likely for those with similar needs as well to be fair).  When one of the many embarrassing incidents involving E’s lack of understanding/compassion came up, Tom and I were equal parts horrified and sad and then realized that when the only people he is exposed to in his everyday life are other kiddos with ASD, well, guess what, he’s not very understanding and frankly, can be quite rude.

That’s when it hit me – the trio needs to spend some serious time sharing some of their talents (or developing some further talents if Minecraft is your sole gift) with others.  I shared my vision with Tom, who was all over it, and then we shared with the children our exciting plan!

Epic. Fail.  Crying, meltdowns about having to miss out on valuable Minecraft time in order to help out at a nursing home, wanting to know how much $ they would make for doing anything for anyone other than themselves, not necessarily embracing the idea of being of service to others.

Tom and I regrouped (and shared an IPA) as that had turned out much uglier than we anticipated!  In truth, following that debacle, I fantasized that my Grandpa were still around so that the children might spend a nice long weekend with him for some “character building” fun.  While it would be easy to fill a book (R rated, of course) with Grandpa-isms, I think his remarks from our days weeding the beanfields  of southern Minnesota summarizes it adequately.  When my sister and I fell behind one morning manhandling a nasty patch of cockleburs (yes that’s a real plant), he looked at my Dad and said “Tom, these girls aren’t going to amount to crap” – ok, he didn’t say crap, but you get the idea.  More importantly, I was 8, and my sister was 6.

Then, in the midst of trying to figure out how to make this work, I took E & A to a local nursery to pick up a few plants a couple of weeks ago.  As we stood in line for check-out, it became apparent that the elderly woman in front of us was struggling to carry all her items, so I volunteered E’s services.  He immediately said something friendly like “I don’t want to help her” and then I gave him the evil mom stink eye, which still didn’t work, where upon I took the hanging basket, put it in his hand and said “go to her car now!”.  The poor dear looked a bit shaken, so I briefly explained that I was working with my son who has autism to be more helpful to others, and frankly, she just looked like she wanted the blank out of that nursery and away from us NOW!

I was sad and depressed, and yes, I’ll admit I was not as calm as I could have been chatting with him on the ride home.  Kind of ironic that I was yelling at my son to be more kind to others – don’t you think?  Ugh.

Then it hit me.  I need help teaching my offspring kindness, helpfulness and compassion because it’s going to take a LOT of practice.  Heck, maybe I need a lesson or two myself!  So, that is my new quest – I need to hire someone (or a large team) to help first E, and then the trio, learn to value and appreciate helping others.  No big deal, right?

Here’s my vision – if I am able to sucker someone into this (yes, we’ll need to pay handsomely), their only mission will be going out into the community and finding ways to commit “Random Acts of Kindness” – you know, holding doors, carrying items, offering to plant a flower, wash a car or mow a yard, etc.  I will likely set things up behind the scenes, of course, so if you have any tasks that you need help with or know someone who could use a helping hand with something for whatever reason, please give me a shout-out!  They need to be able to handle a 14-year-old who will likely complain a lot initially, but with repeated practice and spreading good will, I’m sort of hoping he will develop some intrinsic sense of pride for helping others (hey – I can dream).

E’s the kind of guy that he just needs a lot more exposure and practice doing something than his typical peers, so if we spend our summer with this goal in mind, I’m hoping we might be able to do a bit of good in our little corner of the world, hopefully not alienating everyone in our path.  One step at a time – but can you even imagine the interesting tales we’ll have to tell from the comfort of our red couch?

So, have we persuaded you yet?  Know someone who wants to hang out with E and/or the trio spreading good will for a few hours a week?  Come on, doesn’t this sound like awesome summer fun?  If nothing else, Henry will ensure that there are a bevy of new Minecraft fans in the 90 and over age category.  Win-win!

There is a glimmer of hope, after all.  Last night, E noticed that our neighbors’ grass was getting a bit long.  Instead of marching over to their home to share with them how awful their lawn looks (yes, this has happened – do you even have to ask?), he looked at me and said “I know they are moving next week, and are very busy.  I’d like to help them mow their grass” and then just did it!  Can’t say I didn’t tear up just a little . . .



April Autism Blues

April is autism awareness month and unless you are living in the wilderness Unabomber style, you’ve likely noticed blue lights, lots of news stories or articles about autism, and funky looking puzzle pieces – sometimes blue, sometimes multi-colored all over the place.  Let’s face it – almost every cause has a day or a month these days, and sometimes it’s hard to keep track of what color ribbon represents what, etc.  Earlier this month I recall sibling day and national beer day (both of which I chose to honor) and I’m certain there are others I’m missing but because my sister and beer just happen to rank high on my personal priority list (not always in that order), that’s what comes to my mind.  But, as autism hits home for our family – not just in April but each and every day – we tend to take notice of the attention that April brings.

Bottom line – we spread autism awareness even when we’re not trying!  Let’s face it, sometimes I’d just like to pick up a pizza and not have to spread so much awareness (accompanied by my favorite awareness spreaders of course).  I’m grateful that for the most part, at least 1 of the trio is generally having a good day at any given time.  Hey – you celebrate joy wherever you can find it, right?

Sadly – April also shines a bright spotlight on the disagreements and ugliness that exist all over and through the autism community.  Truthfully, it can really get to me, as I tend to be a teetering in the middle, peace loving whack job.  But there are big, strong feelings about a whole bunch of issues within our community, and sometimes things get a little spicier than my comfort zone allows.  Either that, or I’m just getting too old and tired to fight the big fights.  Besides, the drama for me has been much closer to home of late.

Not long ago, Tom & I were the midst of another discussion related to the E man’s middle school challenges.  While this is sadly nothing new – especially this year – it sort of hit me out of nowhere that Elliott is a very different guy than he was even a year ago, and while it’s amazing to think back and realize how far his journey has brought him thus far, it’s also bittersweet.

Elliott has had a monumentally difficult time of it in middle school.  Not just with the academic aspects, but in nearly every way.  Being overwhelmed by the vastness of the environment, wanting so badly to succeed in the mainstream setting but unwilling to accept help because of a deep desire to be like everyone else.  Experiencing social challenges and feeling more and more funky due to puberty, an avalanche of hormones, and hanging out with 1,100 of his closest friends.  And last but definitely not least, feeling less and less confident because of a reading comprehension disability that impacts nearly every aspect of middle school and the deep desire to overcome it – preferably in a week or less.  Ugh.

The poor guy is a mess to the tenth – and it only seems to be getting harder and harder each and every day.  It’s the worst kind of pain to see your child struggle so mightily, and not be able to help him.  I hate that things have to be so hard for him, and while I’m all for giving him the tools to make some positive change on his own, I feel like his toolbox is filled with puberty hormones instead of proper tools, and it’s only making everything more challenging.

Last week, as Tom & I prepared for yet another Elliott IEP this year, I suddenly realized that it has been such a long time since I’ve seen Elliott genuinely happy.  While the E man has always been a larger than life kind of guy, he’s also almost always  happy.  Even during the earliest and darkest days of autism, he was laughing and joyful the vast majority of his day – interspersed with severe ugliness of course.  When I look back through photos, it’s nearly impossible to find one without his bright and beautiful smile  – he’s just always been a smiling and happy guy for the majority of his days even when working hard to overcome some serious obstacles.

All of a sudden it hit me that I haven’t seen him like that in such a long time, and while I can tolerate a lot when it comes to autism, E losing his zest for life, his sense of adventure and his above average self-esteem makes me want to draw my line in the sand.

Last Friday, we gathered with some amazing educators who care about E, and are committed to helping him achieve more school success in every way possible.  I was so not looking forward to it, mostly because we usually have to painstakingly go through all the God-awful test scores and assessments that clarify in giant, bold ways, that he is light years behind his peers.  But guess what – we didn’t!  Instead, most of our meeting was spent discussing how and why E is successful in a variety of ways, and we were all so excited that for once, the data established a very clear message – E learns more effectively and is far less anxious in a smaller, more structured setting.  Not only that, but his reading comprehension scores have gone up 2 grade levels – which is crazy pants, awesome!

While we knew that E would be devastated to learn that he would be now spending more time at the smaller school setting  (you could say he’s not a big fan of change), we were also able to allow him to stay at his middle school for his favorite class  – Technology Education (this is “shop” if you’re old like me).  As expected, a giant meltdown ensued when he heard the news, despite our attempt to put a positive spin on it, but to be fair, it was not nearly as ugly as we were anticipating.  Who knows, maybe this growing up stuff is starting to click with E?

Today was his first day of his new schedule, and because his bus schedule can’t be modified that quickly, I am serving as his “transportation” between schools for now.  He walked into the school office at our appointed time, a bit quiet, but not anxious at all, and proceeded to walk a good 20 paces ahead of me to the car.  When he arrived at his smaller school, he immediately filled out a nametag for himself even though I’m fairly certain everyone there knows him, and then marched off down the hall with his new Case Manager – the amazing Mr. K, ready to take on the day.

I was left to work out meds in the school nurse’s office, and while I had tried to remain upbeat and cheerful with E, I immediately broke out into an ugly cry the moment he was out of sight, which was a pinch embarrassing.  Every fiber of my being wishes that middle school and Elliott could be better friends, but if that can’t be true for now, at least my son had his chin up, his can-do spirit in place, and his super skinny jeans to help him make a good impression throughout his day filled with change.

One of the hardest lessons we all need to learn in life is that sometimes what we want is not what’s best for us.  Trying to process that as a 14-year-old guy during puberty with a heap of autism is even harder.  But today, the E man swallowed a bitter pill, and kept on walking down that hallway while his Mom had the meltdown.

As I drove home, one of E’s favorite Supertramp songs came on, and I sang along to “It’s Raining Again” and thought about how amazing he is, and how much I love his fighting spirit even when it makes parenting almost too painful.  I only hope that as the days pass and we all settle into our new normal, that we’ll see some glimpses of E’s beautiful smile once again.  I know it’s lurking in there somewhere . .

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 . . .