Shaken & Stirred

Let me be upfront in order to save you some time – this is not going to be about martinis.  I know – that’s probably deceitful of me in some way, so if you followed this link hoping for recipes, I can’t help you.  To be fair, I was attempting to both describe the crazy range of emotions we’ve experienced in these parts the last few weeks, as well as honor my kind and thoughtful first husband, Tom- giant James Bond fan and birthday guy later this week.  Who knows – he may decide to celebrate his birthday (which may I add is in a completely different and more advanced decade than mine) with an appletini – living on the edge and all . . .

Frankly, a low key, drama free week would be inviting, as it’s felt a bit crazy pants around here of late.  You know it’s bad when stress creeps into life and both Elliott and I are up at around 4 a.m. or so!  This is never a good start to any day – thankfully Elliott knows how to make a robust cup of coffee, and kindly helps me out most mornings.  This is also likely why the red couch has remained so quiet despite a bevy of craziness.  My ability to even form a sentence has been compromised.

Suffice it to say this gets confusing for me to timeline because there is much overlap of good and ugly, so let’s just go for it, shall we?

A few weeks ago E was nominated for a kid community/volunteer award by an amazing and caring person named Jessica who happened to serve on the “Light it up Blue” committee with him last spring.  She thought he was kind of a fun guy who was doing his best to give back in his community in his own way which was pretty terrific of her to notice.  About a week later, a local television station reached out and asked if E would participate in an interview.  E agreed, kind of passionate about said station, and they shared with us that one of the morning anchors would be doing the story.  Soon thereafter, we began corresponding about where/when, etc., and they asked if they could conduct the interview at school.

Pause – this is where things get icky/confusing, and whether fairly or unfairly, felt to us like E’s team didn’t seem to care or want to deal with a special education student receiving a community service award.  Long story short, school said no, and the interview happened at our house.  Most importantly, this has a happy ending.  We met an kind and caring tv anchor and camera guy who were amazing, all 3 siblings got to interact in the interview, and we have some great new friends who made this experience fun and special for E and for our family.  The end result was a lovely story that honored the very best of E despite his nerves getting the best of him initially during the Q&A and that is so cool.  E has been watching it every other day or so, and smiles with joy when he sees himself having fun on the tv screen.  It’s very sweet to see him be a bit proud and a bit shy all wrapped up together.  It’s an experience I believe he will cherish for the long haul.

E attends a special education program, and without a doubt it would definitely have created some unique obstacles to film the interview there and follow privacy guidelines, Hippa regulations, etc., and we really get that.  But it wasn’t so much that they said no as much as it was how – it felt abrupt and dismissive, and it stung.  E was in tears, which just tore me in half, and then I started to consider if it had been at any other school or not been a kiddo with special needs, would this have happened as it did?  I really believe most schools would be proud to have a student honored to be receiving a community service award.  I mean that’s a good thing, right?  If a student is doing something positive, it sort of shines a positive light on school as well.  It just seems like an all-around good thing, and maybe that’s why it surprised me when things went down as they did.

If this had been Henry or Ada, I truly can’t imagine their schools saying “we’re going to pass”.  The hardest part was that it hurt E, and something that should have been an amazing thing for him suddenly took an ugly turn.  Had they shared with us that this was going to present a lot of unique obstacles but that they would do their best to work around them, it would have made all the difference, but that’s not what happened.  Maybe it hurt even more because he was days from turning 15, and struggling with accepting how his autism affects him as well as self-esteem challenges after what can only be described as a year of extreme academic ugliness.

In the end, we learned a lot.  We have amazing and caring neighbors who voiced their concerns, and friends who went to bat for E in a host of ways and ensured that this was an amazing honor for him (complete with cake) and inviting him to attend yet another committee meeting (his fav!).  It really made all the difference, and made E feel valued, which was awesome – and for that, our gratitude runs deep.

Plus, despite the fact that I’m already that crazy mom who sends too many long-winded emails to school every week, I suddenly was communicating with school on a whole new level – heck, my new educational administrative friends have witnessed the ugly cry by phone and in-person all in the span of a week!  Now I’m betting that both E & I have been the cause of more than one staff happy hour – of which I’m fully supportive of for the record!

I’m all about forging strong and open back and forth communication with the educational teams the trio gets to work with.  With 2 kids on the autism spectrum, and the middle guy with ADHD, Tom and I realized long-ago that we need to get along well with our fellow village members in order to make this work at all!  I try hard to remember, even during trying times, that while Tom and I were drafted into the world of autism/special ed., these fine people chose their path – and likely didn’t do so in hopes of becoming wealthy.  It’s a valuable lesson to keep in mind during hard times.

Despite some icky interactions when E was first diagnosed with some early childhood special ed. staff members (I was an emotional wreck mama bear without Prozac – it was decidedly unattractive), I’ve worked hard to build partnerships and relationships with the educators who have helped our kids – in public and private settings.  This has been a tremendous help to us as we work to interweave the different segments of life together for the trio (home, school, community, therapeutic, recreational, etc.)  I’m really proud of this, because it has truly made a huge difference and gotten us through some challenging times with creative and collaborative problem solving.

Over the summer, we lost some terrific educators who had been in E’s corner for the long haul.  They moved on to different positions and even though it was hard to say goodbye, we were truly happy and supportive of them as they forged ahead on their own paths.  Still, it felt a bit lonely starting over, as relationship building takes time, and this suddenly put us in complete start over mode just weeks before the new school year started.

Now, at the same time this whole interview shindig was going on, we were alarmed when E quite suddenly didn’t want to go to school for fear of being hurt.  Despite the fact that I am more an over-communicator than an under-communicator with school, it felt like it took effort to get clarity about what was transpiring – and it wasn’t good.  While I’m doing my best here to respect boundaries and privacy as best I can while sharing from our view, what I will say is that E definitely had some ownership in this dynamic stemming from socially inappropriate language that I wish had been conveyed to us long before it was.  I really believe things might have been remedied had we been clued in more specifically. Maybe it wouldn’t have made a difference, as it’s easy to speculate looking back from here, but I know we would have done our best to try.

All this led to several new changes for E, and an abrupt IEP meeting, which was surprising but far from what stung the most. That has nothing to do with minutes and everything to do with trust.

At the end of the day, I rely on gut instinct when it comes to making the big deal decisions for and with our kids – I call it my “autism mom gut” and dorky or not it’s served me well over the years.  I kind of despise IEP speak even while realizing the necessity of it – it’s just not my personal style and I own that.    I’m just never going to be that mom pointing to the IEP and insisting on two 10 minute sensory breaks a day, etc.  Instead, I need to believe with every fiber of my being that an educational team is going to give sensory breaks when needed because it’s the right thing to do and not because an IEP is dictating them once in the morning and once in the afternoon.

But my lack of IEP love burned me this time, and in too many ways and for too many days, E didn’t get the best of what his team has to offer.  It hurts to even say it out loud, but our trust has been compromised, and it’s not going to be an easy fix.

All this has been really hard to be carrying around of late.  I’m glad to be rid of it, and most of all, glad to have been honest and upfront with E’s school team.  I appreciate that they owned what they could, and even if my emotional breakdown was ugly, they allowed me to feel heard, and that matters.  A lot.

Do we believe any of what transpired was intentional?  Of course not – and while I’ve only shared this side of things, my best guess is that it was all a combination of little things that contributed to a bit of a mess.  But even without intent, it hurt, and it’s going to take some time to find a way to rebuild trust and forge ahead to give E the best of what we’ve got so he can give life the best of what he’s got.

Gratefully, E is not afraid of hard work, and neither are we.  Ok, he may complain about it more outwardly than most, but no matter what, we’ll just keep putting one foot in front of the other – preferably with a side of “Journey” for good measure.  Time to forge ahead . . .

The Heavy Coat

In some ways, our lives have been on pause since September 30, 2003. That’s the day that we received Elliott’s autism diagnosis, and every year around now, I feel a bit unsettled and emotional. It’s kind of like wearing a heavy coat on a warm day, and wishing you could throw it off, but not being able to. So far, I’ve only been able to unzip it. It’s burdensome, it’s uncomfortable, and I worry that it’s visible to everyone, but in time, it will once again become a sweater, and the heavy coat will be tucked away in a closet for a while.

This year, my coat has been bulkier than usual, and I think that’s because I’ve been a bit blue since early spring. Nothing monumental about that time, it’s just when I began to take note of it. Each of the kiddos had been having challenges of some sort last academic year, and I suddenly felt not at all the proactive, deal with challenges before they become challenges kind of ABA Mom I had been trained to be. Rather, Tom & I were staying up way too late, trying to put out one fire or another, and always feeling like we were reactive rather than proactive. It’s an icky feeling really. Plus, even though some (if not most) of the issues were just general stuff that comes up for most kids from time to time, it felt compounded and overwhelming when it was all lumped together, and some days I just didn’t even know where to start.

True, all 3 of our offspring had their own unique episodes of ugliness last year, but the E man’s challenges were often epic compared to his siblings. Elliott experienced 2 years of ever increasing anxiety and academic challenge in middle school. It got to the point where I would drop him off, and expect a phone call from his school within 30 minutes. We tried every tool in our toolbox, and collaborated with some compassionate and caring educators, doctors & other professionals, but it was not meant to be. In his own way, he told us it wasn’t working. Sadly, it just took me a long time to be quiet and listen instead of trying in desperation to make something work.

So, when Henry and Ada had their own little bumps in the road, I felt so overwhelmed by the enormity of E’s issues that I realized I had missed some glaring signals from each of them that could have helped deal with things earlier. Then it became that awful revolving parental regret thing that never really accomplishes anything except increased tension and ickiness. (I promise this won’t be as dismal as this all the way through – hang with me). Thinking to myself that if only E’s difficulties were reduced, that I would have more time and focus for H & A, and realizing that Tom and I had emptied and shaken our Elliott toolbox, and were out of ideas, despite our home life getting uglier and less harmonious by the day.

I’m guessing by this point you can tell the heavy coat was on – heck, maybe it was 2 coats for a while combined with a giant dorky fur hat. You know the type – exceptionally unattractive. I pulled back from most outside commitments, and said no to almost everything social in order to put every ounce of energy into the trio. Yes, I can now see that was a crappy decision that only made me less pleasant to be around and likely prolonged some of our challenges, but it’s just easier to see that in retrospect.

So much about autism for me has been isolating anyway, but all of this just made it worse. I couldn’t see an end to the ugliness, and I felt bored complaining or sharing crummy stuff all the time. And so I just let myself feel sad for a while, and soon enough things started to feel better. This is a lesson I learned a long time ago about my journey as an Autism mom – it is better for me to allow myself to walk straight through the painful feelings, lost hope, unsuccessful plans, overwhelming sadness about what won’t be rather than trying to step around them or avoid them. It’s icky – but there is also a sense of cleansing from walking head-on through the ugliness and getting to the other side. It gives me perspective and compassion for the struggles we all face in new ways, and it’s humbling.

We spent a lot of time with a variety of family over the summer, but not much else, and that was ok. While family stuff has its own funkiness here and there, my sister and I had no giant blow-ups (i.e. our chicken fiasco), and our offspring were kind of sweet together in new ways. Henry’s man voice made everything kind of amusing, Nik was enjoying fascinating conversations with Ada and doing electronic junk with H, and Elliott and Xander who both feel strongly about controlling lots of aspects of their world now and then experienced peace and harmony and even a few smiles.

E transferred to a smaller, more structured school and almost immediately began having more success. During summer school, his teacher emailed me week one to say he was a completely new person, and he had never seen him so relaxed, social or focused. Even when Ada would have some sort of dramatic moment at home, E would often be the voice of reason which would cause all of us to look quizzically at one another to make sure we weren’t hearing things. Sure, he had his moments where I thought he was going to have a giant meltdown, but then he would catch himself, and apologize for overreacting or sometimes go out for a bike ride to shake it off.

No, not everything is better, but a lot of things are. Some days he still laughs inappropriately about death and that hurts feelings, and he still finds joy in referring to teachers and administrators by their first names rather than their proper titles. Some days his focus is not great, but some days just blow me away with how articulate and perceptive he’s become.

On one occasion, we were asked to share our experiences at a fundraising gala to benefit the summer camp the kids have attended for years. I gave a short speech about our family, and all the ways that camp has made a difference for our kids and our family. I’m not a talented public speaker (this is putting it mildly), and because my heavy coat happened to be on that day, I didn’t “connect” with the audience and just kept tearing up through every other sentence. It was pure ugly actually. After I finished, I sat down, and Elliott looked at me and said “Mom, why do you cry whenever you talk about my diagnosis?” Wow – that threw me! I was so taken off guard because he has never asked me anything like that before, and I didn’t want to blow the opportunity to celebrate that. So I gave him a hug and told him that I was not sad about autism, but I was sad that anything was going to make his life more challenging because I loved him. He thought about it a minute, and said “Ok. You promised me ice cream, can we go to DQ?” It was beautiful, funky, and pure Elliott in every way.

Ada is struggling a bit more in some ways, and her sensory challenges seem bigger to me now than they have before. But Tom and I can’t decide if it’s because they really are increased, or if it’s because she’s able to articulate them so much better all of a sudden, which helps us know how to help her. Her confidence has grown and she’s chattier with teachers and peers, but she’s also all of a sudden really picky about what she eats. She remains strong willed, a bit sassy, and has fascinating ideas for pairing articles of clothing that mostly make me smile. She tried to resign from 3rd grade yesterday because it is “inappropriate”, but by this morning, she was excited to return. In short, she’s awesome.

H has grown tall this summer, and his man voice is now firmly established – no fluctuating. He tends to be a bit oily, and rarely smiles in photos, but is also a lot more comfortable in his own skin. He’s branching out in some new social circles, but hanging on to some elementary dude connections as well. He’s been talking with Tom and me a lot more, and asking thought provoking questions that remind us this parenting gig is often serious business! We do our best, and I still give him grief about appearing on page 1 of his middle school yearbook next to a lovely young lady that he claims he doesn’t know. In truth, 2 of his buddies were in the photo as well, and word is they don’t know her either. It’s kind of too easy to make him squirm.

As for Elliott, he continues to slowly but steadily amaze us. The puberty/middle school thing knocked us on our backsides more than we’d care to admit, but we haven’t had to live it like him – he hasn’t had an easy time of it for sure. He’s asking to do tutoring, watching the news every morning, and making academic progress at an increasing rate because he wants to. Best of all, it’s not just us that notices – his physicians, his educational team, his grandparents and extended families all over the place have mentioned how different he seems – more social, more engaged in the world around him, more able to share a conversation or something funny that he notices. It’s not every day, but it’s a lot of days of really great stuff.

So, my heavy coat is shrinking despite inching ever closer to that dorky diagnosis anniversary date. I’m still a bit shaky, worried that everything might fall apart again tomorrow. But, slowly, I’m beginning to branch out again, want to see old friends and volunteer my time where I hope I can help make a difference. Last weekend, we decided to paint our garage, and made it a family project. We haven’t really done anything to this house since autism started hanging out, and there is much updating that we need to tackle. Ada helped as much as she could, but she was dealing with an awful cold, and then got dramatic and went to bed. But around 10 p.m. when we were all exhausted, it was completely dark, and in the past things would have been crazy ugly, I stood back and watched E & H work together, laugh, kid around with Dad who was a bit gassy, and power through to the end. At one point E said “this is really fun” to which Henry said something empowering like “you missed a spot, Elliott.” It was so natural and easy – I hope I don’t forget that moment because this is one of those little things that kind of means everything.

Oh – one last thing. There is a reason that Elliott is in a better place these days – its medical marijuana. 49 patients were registered on the Minnesota Cannabis Registry as of July 1st when it became legal in our state. Elliott’s appointment was at 4 p.m. on July 1st. More about that next time . . .

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