Puzzle Pieces & (Boob) Soap!

Friends – it’s been far too long.  I can’t tell you how many random paragraphs I have saved in my red couch file – some with awesome (mostly inappropriate) titles, or some bright idea I got but promptly forgot when I suddenly remembered where I hid that bag of Halloween chocolate.  There are a million reasons it’s taken this long to write and frankly they are boring.  Besides, it’s all the same reasons anyone struggles with anything.

But even while I’ve had trouble finding the words, I’ve missed being here.  It’s like your old worn out jeans on a sunny weekend day – even better with a strong coffee and a good friend.  While some of our crazy family joys and challenges are painful to put down on paper, it is also amazingly freeing to be able to leave them here and not carry them around all the time.  I’ve got much to get rid of, but am mindful that what I share is my own perspective.  As the trio ages I’m ensuring I seek their approval before sharing anything that may bother them (Tom, not so much).  Granted, there are some days when E feels like “hey – what did you have for lunch?” is too personal to share – but I think you know where I’m coming from here.

While there are many directions this could go (some much more humorous than others), I think it might be best to save topics such as wacky medication side effects, crazy ass hair and wildly uneven noobs for another day.  I think we’ll stick with oversharing of my current level of ridiculousness and then something controversial as hell – awareness. (insert some sort of inappropriate sound effect here).

FYI – before we continue, I think it’s wise to mention that my ovaries were removed last year leaving me without my stop and think about it filter, so this seems like a perfect time to incorporate a topic almost no one can agree upon, right?  I’m trying to work on rebuilding this skill but the truth is I remain a work in progress.  For those that know him, think Grandpa John Elliott Norman with fake boobs – that’s me.

Here’s the deal –  I miss old me a lot – more than I realized in fact.  Maybe I just need more time to work through this or maybe I’ll always look back with a hint of sadness for the loss of who I used to be prior to April 2016.  I don’t quite know the answer to that yet, but I do feel there is a very defined “before” and “after” around this gross cancer thing.  Some days I can’t help but feel like the rest of the world has moved on with life and I’m partially stuck in some sort of cancer hell that is really hard to break free of.

I know, I know – totally inspiring visual, right?

It’s like my post cancer self is searching to find where I fit now because I’m different (& old & have really weird hair) and the things I did before just don’t seem quite right at this moment – and I don’t know why.  It’s just awkward and a bit uncomfortable – like trying on clothes that don’t quite work even though you’ve shopped there for years.  And, this is not so different than what our kids are going through.  Man, it is hard to watch through that parent lens as our teens/preteens try to figure out how they fit and where they belong.  I sense that from the trio in the same way I’m now recognizing it in myself – and some days it really sucks.

Truth is, I struggle to think about anything long term because it causes me anxiety.  I try, I really do, but it makes me impatient, edgy and worried about trying to squish all the important life stuff in right now for fear of losing the chance for good. Then, in my moments of clarity (rare as they may be) I recognize just how ridiculous I am.  Somewhere in that foggy chemo-brain of mine, I know we are and will always be a work in progress.  Life is not meant to be rushed – not even the gross parts.

My sense is that some of this is my way of processing the harm I caused our trio by not being the mom they needed during my illness.  Yes, I “get” it wasn’t done on purpose, and that on some level they will have hopefully learned how to deal with whatever craziness life throws at them.  But right now it just feels really hard, and we’ve had an especially rough time of things these past several months. Tom & I spend most of our time being reactive instead of proactive – and that’s gross and a sure way to fail when parenting offspring that need structure, routine and positive planning. All we’ve got going for us at the moment is a deep love of 80’s music, and sadly, that’s not enough.

Ok –  let’s forge ahead.  This is getting to be a downer.  Time for a topic change – sort of.

While there are obvious differences, I do believe there are similarities with the autism and cancer communities.  Maybe all this crazy stuff I’ve been thinking about is swirling around in my brain because it’s April – Autism Awareness & Acceptance month and I’m bombarded by lots of articles/FB posts/news from a number of different angles, a variety of viewpoints and a giant heap of anger and frustration.  It’s not so different in October (Breast Cancer Awareness month) – the NFL is wearing pink shoes and those that have anger/frustration with pink are sharing messages filled with emotion and sadness (and some new clever vocab words).

Both cancer and autism are large, diverse communities filled with passionate advocates/self-advocates, a great many committed families, service providers, medical teams, etc. –  and some very deep divides.  Whether it be blue lights & puzzle pieces or pink & ribbons, (or a million other things), it feels like the way we disagree more so than what we disagree about stifle both communities from making more genuine progress.   I’m not suggesting the issues that divide us are not messy or unimportant – there is a lot to work through, a lot to learn and maybe there will be things that are just going to be polarizing no matter what. This is not so much finding answers as much as it’s about how to navigate different viewpoints – ideally without being Asshats. This isn’t easy (hell, I’m struggling mightily without my pause and think filter so I own contributing to the problem), but I do think we can and should disagree better.  I just wish both communities would find a way to focus on something  – even one little thing – that most can agree on as a way to bring the community some sense of unity.  As it is I wonder what regular folk think when they see all the ugliness?  Maybe it is of notice only to those who are entrenched – I don’t know?  No matter what, the time will come when it will be helpful to work as one whether you have blue or purple lights or choose to throw a can of hot pink paint on your garage.  While my inner hippy might be shining too bright here, I truly believe that it’s hard to make a difference when we only focus on our differences.

So there.  I’m jumping off my soapbox in full recognition that these divides exist and that no matter what I wish, I must do more than chat about it.  So I did – or better yet we did.  My sweet Ada G and I have been embracing a new passion – creating our own bath bombs and soaps with jazzy colors and scents.  We like the ones that fizz like crazy, (we disagree about glitter) but lavender is our favorite scent.  Pictured are some of our favorite soaps.  Ada likes the little puzzle pieces because they are the perfect size for her, so we have them in an assortment of colors – she digs green but is fine with blue (orange  – not so much).  Ribbons are not so easy to pull off with soap, but I kind of love my new boob shaped soap mold.  Ada and I like a soft peach tone (they smell like lilacs and rain).  I want Ada to care about boobs because I hope she gets to keep hers forever.  She’s teaching me a lot about autism and I’m ever grateful to have such a great educator!

Life can be hard and messy and hormones (or the lack thereof) can get in the way of peace and tranquility.  This my friends is something we have had our fair share of experience with of late!  (Sweet Jesus!) And while we may be weird even by weird standards, we also believe in possibility.  Heck – we’re foolish enough to believe that spring will one day come to Minnesota.  However – we’re not complete dorks – we have a back-up plan. The day after the trio finishes school – we’re heading to the Emerald city and hope to frolic about the Pacific Northwest which will be a new adventure for all of us. So far, our “to do” list contains climb a space needle, see baby whales and take Henry to the mothership (Microsoft).  Then, we’ll head out to see some national parks where we can use our hippy boob soap and yell NATURE!

Love ya, man.

Run, E, run!

Many years ago when we were first processing and accepting Elliott’s diagnosis, Tom & I made a decision that while autism was always going to be a part of our family, that we would do our best not let it define us.  Truth be told, especially in the early years – it was easier said than done, and there were some periods of time in there when we failed miserably.  Ada’s diagnosis a few years later added a new layer of difficulty to our goal, but we still hung on to that hope and slowly but surely, we sort of evolved into our own unique brand of family funkiness – including autism, but not defined by it.  Sure, there are still days here and there where autism seems to fill every inch of space in this house, but there are just as many days when it’s just hanging out in the background.

Now it’s time for cancer to do the same.  Let’s face it – cancer is gross, scary and completely overwhelming – not just for me, but for our whole family.  It really has taken over my life and by extension that of our family since March, and has been all consuming.  Going through the trauma of diagnosis, learning after surgery that what we thought we were dealing with was actually quite a bit more serious (stage 3A instead of 1), and then digesting really icky percentages regarding recurrence and beginning a long road of treatment that won’t end until December.  All icky and gross.  Blah.

So much of these last few months is a total blur to me – it’s like a giant swirl of the most horrific and unimaginable nightmare possible combined with some of the most incredible gestures of love and kindness our family has ever known.  We’ve met even more amazing people on this new journey, and learned that despite our many faults and failings that when something really awful like this happens, people in your life show up and give the very best of themselves to you.  Makes me weepy even thinking about all the big and little things that have gotten us through this far – humbling doesn’t even begin to encapsulate it.  My heart runneth over.

While cancer (at least the treatment aspect of it) will remain in the forefront for me for many months, it is slowly but surely becoming just another part of my life.  The really gross red devil chemo treatment is done, and I’m tolerating the new treatment (Taxol) much better.  Sure – my hormone levels are whacked out and I’ve been a bit edgier than I’d like to be, but frankly, it helps me relate to the teenagers that live here.  I’m also not a giant fan of steroids that make me swell up like a balloon – but then I remember that it prevents life-threatening allergic reactions to Taxol, and I apply my women’s Rogaine and go about my day – puffy but also more present in the lives of my trio – I’ll take it!

Speaking of the trio – they rock!  While Tom & I have each faced health challenges this year that have made us slightly ridiculous parents, they have stepped up in new and surprising ways, and we’re realizing that all those years of chat about how families stick together and help one another during thick and thin must have actually sunk in on some level!  Let’s just say if any of us were wearing clean clothing during April, May or June – it was because of the trio.  Sure – there was plenty of whining involved – but to be fair, likely less than from their dorky parents.  Without a doubt, our offspring have weathered the ugliness around here far better than either Tom or I, and our pride runs deep just thinking about how each of them has made the best of an otherwise crummy year.

This week is a perfect example.  E man has accomplished something that not that long ago seemed truly impossible, and he’s doing it with his own personal style and with the support and encouragement of many amazing people.

Here’s what I posted on Facebook a short time ago about it:

Last winter, my special needs Mom pals (Heather Tidd, Kelly Sue Kausel) & I asked to meet with our 196 Director of Special Ed., Mary Kreger, about community inclusion and the many ways we can come together and improve upon what exists today. For some crazy reason, she said yes! Despite their busy schedules, our Senators Jim Carlson & Greg Clausen attended as well because they have invested time and energy learning and understanding more about families like ours, and how they might be able to contribute ideas and solutions. I’ll never forget sharing that it is just not feasible for our Elliott to participate fully and independently in extra-curricular sports and activities, and how sad that made me, and most importantly, Elliott. I was suggesting some alternative recreational possibilities for kiddos like E when Sen. Clausen asked me how and why E wasn’t able to participate in any of these school activities? He reasonably wondered if given the proper plans/supports this could work given inclusion with his typical peers would seem the ideal whenever possible. While I tried explaining the many obstacles our family has faced doing just that, I couldn’t stop thinking about it & it weighed on me that I had in a sense given up. It hurt. Two days later he called me and passed along the contact info. for a 196 sports coordinator willing to help us. Suffice it to say, Sen. Clausen was right, and thanks to him, I was reminded of what true community inclusion can look like when lots of committed people work together. I’ll never forget that lesson nor his going above and beyond to help our family. Because of the generous inclusive spirit and commitment of many, today I can share with you this photo of Sen. Greg Clausen & the newest member of the Eagan High School Cross Country team, Mr. Elliott T. Kramer. Thank you, Sen. Clausen, for caring about community inclusion and working hard to make it happen for our family and countless others! Run, E, run!

________________________________________

When I penned that we had just heard from some amazing and helpful school administrators at E’s various educational settings that the Cross Country Coach would happily meet with us and give him a chance, and while I own that part of me was so anxiety ridden I didn’t sleep for a few nights, I was also unbelievably excited and proud that E was now ready for something like this and that we were honoring his hard earned wish to participate in a school sport.

Last Friday, as I sat around a table with E’s amazing Special Ed. Coordinator, Mrs. T. and Coach B., I realized once again how deeply many of our educators want to make a difference for kids and their families.  Taking time out of their summer, agreeing to meet with a crazy, bald mom who cries too much, and strategizing terrific and creative ways to utilize E’s many strengths while also preparing for the inevitable bumps in the road – it was amazing and positive, and all of a sudden everything felt more hopeful.   I left that morning realizing how far E had come since the monumental challenges he faced in middle school, and while the 2 buildings share a parking lot, it suddenly didn’t provoke my own anxiety levels just being there because E’s toolbox is filled with lots of new strategies, an incredible support system, and a strong desire to succeed.

This Monday morning at 8 a.m., E & I pulled up to the front door of the high school for his first practice.  He flat out refused to allow me to walk him in and then was even more insulted when I asked if I could photograph him in front of the Eagan High School sign on his first day of Cross Country practice!  All I got was a bad shot of him running away from me as I hung out the car window, and to be fair, he was in the right.  (This one was at home – still not pleased with me for wanting to document the day).  

It took everything in me not to immediately reach out and find out how his first day had gone.  He was tired from his long run, but all smiles when I picked him up.  Still, he didn’t want to overshare, and reminded me this was mostly his private business and that he would let me know if I needed to be aware of something.  While I knew deep down that I would certainly have heard about any serious challenges, it was still exciting and scary to let him be on his own, hanging out with a group of typical high school guys and doing his best to fit in.  Something that we had always hoped for him, and more importantly, something he wanted for himself.

Then, the email arrived from Coach B.  You know the kind – the ones that make your autism mom heart swell and nearly explode out of your body.  Here is an excerpt:

________________________________

Hi Kammy,

Just wanted to send you a quick email.  The first two days of cross country have been great and Elliott seems to fit right in with the team!  Coach M ran with Elliott on the first day and helped him with strength training after.  And today we did a workout as a team and he did AWESOME!

Please let me know if you have any concerns on your end but as Coaches we think it is going great!  We are glad to have Elliott out for the team 🙂

______________________

Yep – you know that one’s getting framed!

I let E know that Coach B thought he was off to a great start, but he told me he already knew that because he checks in daily.  Still, I could tell he was proud.  And after running several miles every morning and using the weight room he’s extra mellow the rest of his day, and frankly quite pleasant to be around.

He’s even inspired Ada & I to start some morning running – well, it feels like running to my water-logged steroid filled body as I sweat and turn red and look next to me while Ada is simply strolling with an occasional jogging step and lots of dancing hands.  At least she encourages me even if she doesn’t like my “old mom music”.  Come on – “Hippie Chick”?

Today, E is baking up a storm.  He arrived home earlier this week with his Cross Country fundraiser packet, and told us he needs to raise money for his team to have enough coaching help, for team awards, and for post meet treats.  While we’re grateful this does not involve wrapping paper or magazine sales, it’s been a challenge for E to practice his sales pitch.  His Grandmother’s got some interesting phone calls, and then we decided to play to his strengths – brownies and monster cookies!

The trio has been converting our basement from a toy area to a teen hang-out, so after clearing out the items they are ready to part with (yes, even Henry the packrat), they have decided to do a garage sale/bake sale tomorrow (Saturday) morning.  The proceeds from their “stuff” will fund whatever fun extras they choose when we spend a couple of days in the WI Dells next week, and the bake sale proceeds will benefit E’s Cross Country team.

So, if you’re around tomorrow morning, pop over to our house for a cookie or a brownie and give Elliott a chance to practice his “please support my team” pitch.  It’s likely to be a bit rough around the edges, but he’s determined to do his part.  As always – with his own unique spin.

Run, E, run!

 

 

Bad Breast Cancer Day

Yesterday was a crap day.

Not even going to try to sugar coat that one, nor pretend that I dealt with it as best I could. In short – I didn’t.  I just fell apart – multiple times, in front of my children, my cats, and some random guys who were here pounding really loudly on my kitchen floor.  Yep, that was awkward.

So, here’s where I’m at. Really gross radiology appointment where I was first told I had a very suspicious mass that was likely cancer, followed (a few days later, no stress there) by a biopsy where I learned it was actually two areas, and then the phone call revealing both biopsy sites confirmed breast cancer.

Note – that few days between the radiologist telling me I’m likely in for one really difficult year to confirmation that it was indeed cancer was when the fear was craziest and I was barely functional. Really the only thing that kept me remotely able to get through the day emotionally was some serious anxiety medication from my health care provider that had me sleeping almost constantly.

Next was my initial meeting with my surgeon, and while that likely sounds super scary, it provided a small sense of comfort. She was soothing, honest and upfront about what she felt was going on – two fairly small areas likely not connected, and no obvious signs of spread to the lymph system from the radiology reports.  She was straight up about my need for mastectomy instead of lumpectomy, but to be fair, I think there was almost a sense of comfort about that just because of who I am and where my mind travels during the dark.  Knowledge is power, and she laid out something far better than what I had feared during those days between finding “something” and meeting her.

Then, the reconstructive surgeon appointment, which once again was oddly soothing. Part of it was just him – he’s very good, and deals with sad women thrown into this crappy situation all the time.  Still, his large 3-ring binder filled with before and after photos provided a small sense of comfort, and the visual confirmation that a year from now, my new “me” might be ok (depends on “side boob” according to my friend Sarah, but let’s save that discussion for another day).  Maybe the best part of that appointment was when he acknowledged that while this was emotionally devastating for me, that for him and for my cancer surgeon, I had what he referred to as “garden variety breast cancer”, and there’s this odd sense of comfort about being what they suspect is kind of ordinary in this situation.

Next up – surgery scheduling. Ok, here’s where the funkiness begins.  Both of my surgeons practice at different hospitals, but connect a few times a month for people like me.  They are also both kind of awesome, which is beyond fabulous for me, but not so easy in the hooking up for surgery department.  On top of that, my breast surgeon was out last week on vacation, so my very sweet cancer coordinator could only tentatively schedule my surgery which we penciled in for April 4^th – my birthday.  She told me that the surgery was a bit later in the day than typical for my breast surgeon, and she didn’t anticipate a problem, but also didn’t want to interrupt her vacation to confirm so she said I’d hear back on Monday.

The trio has spring break this week, and (of course) the contracting company our insurance company has on board to help restore our dishwasher flood damage is starting their work this week. It was Monday afternoon before I realized I had not heard back, so I sent a quick email to my coordinator.  That’s when I learned that she is now out of the office on vacation, and her fellow coordinator is helping her out this week, so I forwarded my note to her.  It was late Monday by this time, so it didn’t surprise me that I didn’t hear back.

Yesterday (Tuesday) morning, I received an email from my coordinator’s partner, and that’s when I suspected an issue. Though I had explained that I was just waiting for my confirmation on the time for the 4/4 surgery date, instead her email was something like – ok, just confirming that we’re doing a double mastectomy with reconstruction, right?  And then letting me know that the surgery scheduler would be calling me shortly with further details.  Red flags were up – I took extra Prozac and made sure Elliott was up to date on his cannabis.

Late morning, I got the call – it didn’t go well. She told me she was confirming my surgery date for April 18^th, and then I lost it.  Literally just freaked out – not in anger, zero to ugly cry in 2.2 seconds complete with sadness/confusion/alarm & exceptional discomfort.  I told her I was confused as we had been just waiting for a time confirmation on the 4^th and she explained that the earlier procedure my surgeons are completing together on the 4th is a complicated case and they just couldn’t squish me in.  I was devastated.

So, in the midst of all this, the guys working on preparing our kitchen floors for installation left our front door open, and the kids could not find our rescue kitten, Franni, who loves to run fast and climb tall trees. That said, here’s the scene, sad kids in tears about not being able to find Franni (except Elliott who just kept yelling “2 cats is enough – just let her go”, exceptionally loud pounding and sanding machines creating a sort of fog, and some emotionally difficult news from my surgery scheduling friends.  All this, on the only decent weather day the kids are likely have this “spring” break in MN which naturally already has my mom guilt on high.  Suffice it to say GIANT ANXIETY ATTACK.

I couldn’t even form sentences, so I texted Tom with the details, and he immediately sprang into action. He called Carol, who is the amazing coordinator the biopsy radiology center has that actually chooses to work with crazy people like me.  She’s the kind of person I’ve always wished I could be more like, and has what I would imagine is one of the hardest jobs ever – calling people and telling them they have cancer.  Believe it or not, she does it as gently and with as much grace and compassion as is humanely possibly.  Rather than remembering for the rest of my life how horrible it was to get that phone call, what I know I will remember was the skill, care, compassion and heart that Carol utilized.  She’s just all around good people.

You see, Carol is the reason I even got in with my surgeon. As often happens in my crazy life, different paths collided, and the sweet nurse that works with the biopsy radiologist who had my case was an autism mom.  She even “got” what the heck I was talking about when I told her it would be difficult for me to drive up to Maplewood, get my original disk of scans, do an IEP meeting and then head off to a biopsy appointment in Edina.  She went above and beyond to help me (we even talked social IEP goals for girls), and she hooked me up with Carol.  Carol used to work with Dr. Bretzke, and had booked my appointment with her prior to even calling me with “the news”.  She’s that good.

So Tom detected this was kind of a big deal to me (yes, I’m deleting some vocabulary words here that shouldn’t be in print but you can likely imagine them and insert them right here) and reached out to Carol – they were also breast cancer bff’s by now. She somehow worked some magic with people who help coordinate two ridiculously busy surgeons and their schedules, and I am now booked for surgery at 2 p.m. on April 6^th.  There’s a whole bunch of in-between that Tom hasn’t even shared with me about how this went down, but I’m certain it was gross.  All in all, Tom Kramer is all right, and I am lucky to have him.

The 2 week delay thing – well, it was just too much. I know that it’s just my anxiety, but in my darkest moments, I can just see those sneaky, creepy little cells cruising around and hiding somewhere and every day that I wait around with my poisoned, bruised (from biopsy) right breast gets more difficult.  Logically, that’s not consistent with what I’m hearing from my medical team, from the articles I’m reading, etc. but that’s just who I am, and the Prozac is not taking that away.  The boobs need to go, as that’s when I’ll get more concrete answers about what the heck is going on in there, and the best ways to keep it away.  Whew – I’m grateful my village worked some magic, and that the path ahead seems to be coming more and more into focus.  It’s just a journey I’m not so comfortable with in general, but no one is, right?

About 30 minutes after this fun, a migraine came on at full strength, the pounding and sanding in the kitchen got louder, and the meds got stronger. It was just not my day – emotionally and physically, I was dangling at the end of my rope – and feeling like a crappy mom who doesn’t know how to share any part of this process with my trio without scaring the crap out of them.  Autism and Breast Cancer are going to continue to be a very funky mix – I’m not at peace with facing both simultaneously yet, but it’s not my choice to make.

Frankly, everything about this is just overwhelming – people are truly good, and often junk like this brings out the very best in folk. It’s like having the creepiest thing imaginable (cancer in this case) remind you that no matter what, when something like this happens, your village appears, and shows up right now!  It’s humbling – it just is.

Ok – two small ASD related updates because let’s face it – my breasts have dominated my thoughts and this blog a bit too much of late.

First up – E man. Remember all those amazingly long and depressing red couch posts over the past 2 years about how E and middle school don’t pair well?  Since last spring, he’s been hanging out in his smaller, more structured school, and while we worked through a road bump or two – he’s been having some rock star success.  Get this – I just received one of those IEP Progress Reports school sends out that usually make me want to puke detailing any progress toward specific IEP goals, and he’s already met 2 of his goals (remaining on-task with non-preferred tasks & appropriate social interactions including sensitive subjects).  Best of all, because of his hard work, determination and appropriate self-advocacy, he started attending Henrys middle school last week (no, I’m fairly certain Henry still has no idea and yes, we told him) for a 1^st period math class each day, and it has been very successful thus far!  He told me he got to meet the Principal, but “not in a bad way – in a manners way”.  E man rocks, and so does medical cannabis.

Second, Ada’s IEP was last week. Sure, IEP’s and breast cancer may not seem fun, but I’m going to flat out say it – this was by far the very best IEP we’ve ever had for Ada.  Not because she doesn’t continue to face challenges navigating a mainstream setting as a girl with mild autism/language deficits, but rather because we’re all the on same page.  Her team just “gets” Ada, and we even got to brain storm with one of the amazing special ed. coordinators to get some social goal ideas for girls (this can be quite tricky), and she had some great ones.  Ada’s pride about her school and her blossoming social connections are hopeful, and I think we’re all prepared to hoist that bar just a little bit higher, and empower her to embrace 4^th grade with zest. Ok – that was a bit overly optimistic, but I think you get it.  The girl is happy, holding her own, and continuously trying to boss the brothers around – win-win!

No, I’m not purposely leaving Henry out here, but he has inherited my anxiety and is not quite himself at the moment.  Positive goals & meetings forthcoming.  That said, he has used spring break to share with Ada why people laugh when talking about the planet Uranus.  I’m certain the 3rd grade educators will be thrilled with this development!

Last night, Ada and I were reading the new book our friends from Amazon delivered – “Have You Filled a Bucket Today?” which is a charming little story meant to encourage young folk to be kind and spread good will by “filling buckets”. The book maintains that every person has a bucket, but it is imaginary, and it can be filled or depleted based on your actions (you get the drift).  My sweet, creative, somewhat literal Ada G really enjoyed this story, but struggled with the whole imaginary bucket concept.  We decided to sleep on it.

This morning, I was doing paperwork on the red couch when she appeared at the top of the stairs holding a small stuffed t-rex, an overweight Siamese cat and mismatched pj’s and said “Mom, my bucket kind of hurts this morning”, and you know what? For some reason, that just made complete sense to me today.  My bucket kind of hurts too . . .

Peace, Love & Asshats

I’m going to be upfront with you – I’m feeling a bit sassy today.  Oddly enough, when this crazy, scattered and somewhat ridiculous story is done, if I’ve set out to accomplish even partially what I’m envisioning, this little story will weave around a bit, and hopefully end with a message of compassion.  But that’s not going to happen right away because I feel like it’s important to focus initially on asshats.  Let’s just do this, shall we?

Let me own here and now that asshat is currently one of my favorite words.  While not necessarily appropriate in front of my offspring (they remain critical of my use of “jerk” so asshat would really get me in trouble) I just like it.   It works in a fair number of situations, and while it does have a slight edge to it, it is far less edgy than a lot of words – for instance, almost anything spoken on the middle school bus.

While jerk and asshat feel like synonyms to me, I did look up asshat in Urban Dictionary, and here’s what I learned:

asshat

A person, of either gender, whose behavior displays such ignorance/obnoxiousness that you would like to make them wear their own ass as a hat.

Usage: “Can you believe that my boss is making me stay until 9 pm on a Friday!?” “What an asshat.”

 

Here are just a few instances where asshat has come in handy during the last week (note:  this is a very small sample).

1. Whoa – it’s not cool to act like a total asshat even when the Packers are dorks!
2. Elliott changed my ringtone again, and I felt like a complete asshat when “Noir” went off in the middle of a meeting.
3. Donald Trump made fun of a reporter with special needs? What an asshat move!
4. The administrators of that Facebook group lack compassion, have rigidity issues and are complete asshats!

If you know me at all, you will likely be able to decipher 1-3 with ease, and if we are connected by Facebook, then #4 will not be a giant leap to figure out either.

Granted, I don’t believe I even spoke #4 out loud, but it was very prominently in my thinking bubble last week, and to some extent is still there today which is why I think it’s time to chat about it here on the red couch.

In short, I got kicked to the curb by a private Facebook group for Parents of Special Needs that live in Minnesota.  This was a first for me.  Believe me, I have my fair share of asshat moments, but as a general rule, I’m not known as a controversial Facebook poster.  True, I’ve taken some heat from my extended family about too many cat photos – which is fair.  I own that I straddle the crazy cat woman line frequently, whatever.  Gosh darn it, my cats are attractive!  But I’m mostly about kid pics, funny kid quotes and stories, and puberty drama (i.e. Henry scowling).

For those who may not be a part of the special needs community, there are a lot of private groups that specialize in just about everything you can imagine and they can be awesome.  It’s terrific to have a place to exchange ideas, joys, accomplishments, ugliness, and humor.  Humor is vital.

One of the biggest challenges I felt when our journey with autism began in 2003 was isolation.  It was such a difficult time in a myriad of ways to process a crazy array of feelings, figure out what acceptance meant to me, and build connections with others who were on a similar journey.  The pain and ugliness from that time in my life is still too difficult to look back at with any clarity even now.  I made so many mistakes that asshat doesn’t even come close to encompassing the wrongs I have yet to right.  Yet, in the midst of all that craziness, raw pain, anger, and above all – desire to do everything in my power to help my child(ren), I received the kindest and most unexpected gift I could ever have imagined – the gift of compassion.

Slowly but surely, I crossed paths with others who followed similar journeys – some were much farther along than me and kindly shared their wisdom and experiences with me.  Some were going through similar joys and challenges, and we were able to celebrate small victories and help one another through the ugly stuff.  When I couldn’t bear the pain of being around my friends with typically developing kids – one of my biggest regrets/most astonishing asshat moments – I found peace and acceptance for taking whatever small steps I could – i.e. occasionally washing my hair, or getting through a mountain of paperwork.  To be blunt – when I was the least deserving of kindness and compassion, I was shown an abundance of both from those who knew my struggle in a way few others ever could.

This was old school of course, so I’m talking about support groups, Mom’s Night outs, phone calls and emails.  Had Facebook existed then, I wouldn’t have felt the need to run a marathon, but then again, I would certainly have publicly made even bigger and more public asshat mistakes – best to have left all of that ugliness out on the mean streets of Eagan I think.

Now that my path to acceptance for all things autism ebbs and flows a bit more, I try very hard to remember the kindness and compassion that was shown to me, and whenever possible, I pay it forward.  Whether helping someone through challenge, sharing my own cocktail to surviving diagnosis (Prozac, really strong coffee and the occasional margarita), or just listening and letting them know they are not alone, I consider it a privilege to show compassion and build a sense of community.

That’s what was so discouraging about my oust from this special needs support group last week.  For whatever reason, lots of people I know are going through some really tough times – autism and way beyond.  I felt genuinely sad to have so many people in my life having a tough time of it, and it reminded me so vividly what a bit of compassion and kindness can do during difficult times.

On top of all that, a friend had emailed me that morning to share that she learned she had been booted out of the same group when she tried to post something, and realized she was no longer a member – no notice of “violation”, no note explaining what had happened, or why the decision had been made – she was left to reach out herself to find those answers.  As it happened, something she had shared the day before was a rule violation in this particular group.  It was news of the death of someone in the special needs community with details about funeral arrangements that were of interest to many.  However, at the very bottom of this article was a link to a “Go Fund Me” site, which was obscured and not at all the main thrust of the article.  Frankly, you had to dig to find it (which I did), and because fundraising was a rule violation, she got the boot.  Granted, she didn’t even realize the article had this link, and unless someone was searching for it, few others did either.  But, according to these administrators (there are 6 but 2 seem to be the outspoken majority), a rule is a rule, and that was that.

This particular group has an abundance of rules – more than most if I’m being honest.  It’s not a group I posted much in because it was obvious that those who administer were a bit prickly about what they felt was appropriate for the group.  Plus, I had heard through the grapevine from many others who had run-ins with these administrators resulting in oust or firm warnings, and while I had not experienced any run-ins with these folks, I did feel they lacked a sense of humor.  That said, the group is composed of over 1,000 members and includes parents of children with a variety of challenges – not just autism.  I liked learning about things outside of autism, and enjoyed the information the group posted.  But, on this particular day, I was sad that they had so heartlessly kicked out a friend going through a really challenging time, and thinking about so many others I knew experiencing their own struggles.  I felt it was a great time for a compassion reminder – here is how this went down for those who are not already done hearing about this saga:

 

I wrote the following on the group wall:

 

And here was a response that I received from a group administrator:

 

While our correspondence became private following my “warning”, they shared with me that they believed my intent was to “stir up drama”, and ended with my being ceremoniously booted.  Word on the street is that my comments regarding compassion were all immediately deleted, and all that remained was my response to one of those dorky “what are you thankful for” things that I responded to after they were privately attacking me and in a semi-jerky reply, I answered “booze”.  I’m told booze is all that remains of me in that group, and to be fair, maybe that is for the best.

At the end of the day, I don’t regret that I chose to make a statement about forgiveness and compassion.  They were wrong when they wrote of my post “It was about guilting us admins for our actions.”  The group is private, and they reserve the right to axe people and statements they don’t agree with, but they don’t get to tell me what my intensions were.  Frankly, I can’t “make” anyone feel anything – they have to do that on their own – and clearly they have.

It’s unfortunate that rigidity is preventing these group administrators from exercising the kind of compassion that was shown to me all those years ago when I needed it most.  But you see, I happen to know a little something about extreme rigidity, and the need to have very black and white rules when so much of life falls in the gray.  It’s not easy to learn gray stuff – and I’m hardly exempt from that (apple doesn’t fall far and all).  After all, my original message about remembering to show one another a little extra kindness and compassion was as much for me as anyone – I have plenty of asshat moments, and I own that.

Let’s spin this positive shall we?  This time of year can be really tough for many of us.  Many of our kiddos struggle with holiday stuff.  Heck, I only have 1 kiddo left in my house who genuinely believes in the “S” man, and here’s a clue – it’s not Ada.  That’s just another reminder of how far away from typical our family will always be – sometimes that hurts.

Here’s my hope – I hope you’ll join me in being kind to someone who doesn’t always deserve it or someone who has made a mistake – whether they know it or not.  Heck – I’ll take it a step further and ask that you show a pinch of compassion to someone who may be acting like an asshat.  If it would help, we can declare a “Be Kind to Asshats” day.  Take it from this asshat – it made a world of difference to me when it would have been easier for people to look the other way and go about their business.

You know what else?  It wasn’t just my autism pals who gave me a pass when I didn’t deserve it – but so many of those “typical” friends I had turned away from when it was just too hard have become part of my crazy life again.  And even better, they’ve taught me a valuable lesson- typical kids are not all lollypops and roses – who knew?

All of this has taught me compassion for the various struggles we all face, autism and beyond.  And for that, I am truly grateful.  From my red couch to you, wherever you may be, I wish you peace – yes, even you asshats . . .

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 . . .

 

IEPs & One Amazing Girl

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

Friends –

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 2^nd 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

“Let it Go”

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

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

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

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

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

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

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

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

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

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

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

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

The Look

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

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

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

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

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

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

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

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