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 . . .

Breast Cancer, Autism & Home Remodeling – why not?

 

Ok – things are still gross (just want to throw that out there – I’m nowhere near ok with this craziness yet), but bit by bit, they are taking shape, and every once in a while, I feel like this is going to be doable. Most of the time, I remain kind of crabby and wallowing in self-pity, but I have found my way to inappropriate humor for fleeting moments, and for now, I’ll take that.

Yesterday, I got to meet my reconstructive plastic surgeon, Dr. Migliori, and he’s my kind of people. I had heard from my friend Sarah who has traveled a similar path that he was the bomb, and indeed, he really was.  He expressed compassion, he inquired about our children and how they were doing with all of this, he made discussing boobs as comfortable as possible, and best of all, he “gets” that ridiculous humor is going to be the key to me making it to the other side of all of this crap.

We looked at photos of lots of different breasts, which were all different women he had worked with, each with different “case numbers” below them and no doubt hundreds of cancer journey tales both different and similar to mine. It felt strange looking at breasts and envisioning what this process will look like and feel like during the different stages of reconstruction.  I needed to do that, but it was still funky.  Sure, it wasn’t horrific for this mom of 3 in her late 40’s to hear that in all likelihood I will be able to go running in a year without any form of “support” and be rock solid (I’m still frankly dismayed by this!), but I’d no doubt rather stick with what I’ve got and accept gracefully what age, experience and gravity have done to me.  Importantly – because of cancer that choice is no longer mine, and so, I’m trying with all my might to see any hint of faint rainbow at the end of this very ugly storm.

Most of all, he was kind, he acknowledged how painful, icky and jarring it is to be thrust into all of this craziness so abruptly, and he assured me that while he could not take all this grossness away, that he could do his best to help me feel like a new version of me complete with tattoos if I choose. Wow.  He really does “get” this, and I am beyond lucky for the chance to work with him, and with my breast cancer surgeon, Dr. Bretzky.  They team up for this type of project – roughly 1 ½ hours per surgeon, which frankly seems remarkable to me.

After the scheduling teams chatted, they reached out to me this afternoon to let me know we’re tentative for April 4^th.  Ironically, that’s my 49^th birthday.  They asked if that was a problem for me, and I said no – these rogue cells need to be gone, and that seems as good a birthday gift as I can imagine this year.  Game on.

It’s been a crazy few days filled with ups and downs and kind reach outs and seriously whacky situations galore. My aunts came to town in an attempt to cheer me up despite me sharing what a crappy place I was in.  Indeed, they did get me out into the sunshine, made me laugh, helped me do fun junk with my offspring, and prepare our toes ready for spring.  Sometimes I was a crying jerk, but that’s not that unusual to be fair.  I don’t deserve them.

Sunday afternoon, Ada shared with me that she didn’t want to hug me as she didn’t want to catch my cancer. She also said that Elliott told her I was going to die soon because of cancer.  This caught me off guard, and I tried with all my might to keep it together while bringing the trio up to speed on what we know and don’t know at this point.  Our discussion was honest, and while I can’t promise my kids I’m going to be fine, I did let them know that everything I’m learning from my medical team thus far is positive.  I hope to be here causing great problems for them well into their adulthood.  Come on – they owe me that!  This situation reminded me this needs to be an ongoing dialog done regularly.  Just another new spin on ASD for our family – we’ll just need to keep learning together, and we all have a long way to go figuring out how to do this.

Yesterday, my friend Kris came over and was an enormous help distracting me before my surgery consult apt. Our kitchen/living room area is still completely ripped up/nails exposed floor as we had decided weeks ago to take this opportunity (given to us by our faulty dishwasher last month) to make some additional changes to our kitchen layout.  While this kind of thing overwhelms me anyway, throwing in breast cancer as we prepare for home renovations is just plain crazy pants.  She had me out taking photos of light fixtures, carpeting, and even cabinet hardware, and I only cried a few times.  She easily downsized our giant bag full of samples and craziness into a small ziplock – and that really does rock!  Without her, Elliott and Ada would have bright pink everything.

Today I got to accompany Ada’s class on their field trip to the zoo. It was actually quite fun to just forget about all the ugliness of thinking/planning the upcoming months and just hang out with 3^rd graders watching penguins bicker about who got the biggest fish snack.  She loved it, and sometimes it’s nice for me to just recognize how far she has come on days like this where all the kids just enjoyed one another and laughed and negotiated where to go next and which animals smell the worst.  I need to remember this day when math makes her want to resign from school again.

While the field trip was fab, we did have a fascinating exchange at the bus stop this morning. Ada and I were chatting with one of our neighborhood pals waiting for the bus, and out of the blue Ada looked at me and said “Mom, I’m not going to touch your breasts – you know, because of the cancer” – yikes!  Just then the bus pulled up and while our friend looked a bit freaked out, I’m quite certain I did as well.  Just another reminder that we’ll need to find a way to work on socially appropriate breast cancer dialog or our check-out friends at Target are going to be hearing all about my breasts in no time.  Wow.

Most of all, this remains a roller coaster. I have so many thoughtful, heartwarming, and encouraging messages/notes/emails from people that I haven’t even come close to responding in a timely manner and thanking them.  I feel like a big jerk as I hate not feeling like I’m using my friendship skills and manners, but right now, I’m just not able to be on top of things.  Trying to get things – yes, even big-deal-important things – in order before surgery and whatever comes next is stressing me out a lot.  I know I can’t keep up with what I do now, but how the heck can I not?  We will muddle through, I know we will – but I hate that this is all happening, and I can’t help it.  It just blows – and I can’t pretend it doesn’t.  Ugh.

Ok – tomorrow morning is Ada’s IEP. I am less prepared than I’d like to be, but I have faith it will be ok.  Besides, who knows what all these wonderful people have heard from Ada about my breasts?  This could be a fascinating discussion – wish me well . . .

 

 

 

The Plan – thus far

It’s still gross but I do feel better.

Ok – got to meet my breast surgeon today, Dr. Bretzke. First, I kind of liked her.  To be fair, I know that is far from critically important, and I’d rather her ultimate strength be in the surgical area and would admire her regardless.  Still, it’s just a bonus that I feel her confidence and strength and knowledge spinning all around when I share space with her and she’d be a fascinating person to chat with over wine.  Alas, my time with her will not be as light hearted and interesting, and for the most part, I’ll likely be asleep when we meet again, but I’m feeling more and more like my path is becoming a bit more visible.

First, she handed me a copy of my pathology report. It’s seriously funky and long and not super uplifting reading material, but she helped us interpret which was very kind.

I have 2 tumors – 1 at 9 o’clock (yes, they use clock terminology), and 1 at 12 o’clock. Based on the testing thus far, it appears that they are 2 separate tumors, however, it is possible that they are 1 larger tumor, and we won’t know that until surgery.

As far as hormone testing goes, both tumors are Estrogen and Progesterone receptor positive, which I’m told is a good thing because there is a clear treatment to inhibit redevelopment, and that was the 1 absolute she shared today. I will need to be on a hormone medication for the next 5-10 years following cancer treatment.

The other test they did was more inconclusive. It’s a test for HER2 – one of the biopsy sites was inconclusive, so we won’t have results until after surgery.  This also makes predicting what steps follow surgery more challenging at the moment.

Ok – surgery. Yes, I need it.  I’m not a great candidate for a lumpectomy because of the 2 tumor locations not being close together.  She recommends a mastectomy of the right breast.  I asked about the left, and she said it’s my call.

Because anxiety and I are not friends, and I would constantly be worrying about my left breast (not to mention symmetry issues – right side would be 20-year-old Kammy and left side would be following-3-offspring Kammy – yikes!), they are both exiting stage left and my new friend, Dr. Miglioni, will help me with reconstruction. This is clearly someone I need to befriend, and have Elliott bake brownies for!

Surgery is likely to take place in about 2 weeks – however, the exact date can’t be scheduled until I meet with Dr. Miglioni, the reconstructive surgeon (reconstruction occurs immediately following mastectomy – one surgical team leaves, the next comes in), so it all kind of happens in synch, which kind of amazes me.

They will do lymph node testing during surgery, and further testing on the tumors that will guide treatment moving forward, but those results won’t arrive until a few days following surgery. As of right now, Dr. Bretzke is considering my case to be clinical stage 1, but if the tumors are actually 1 larger tumor and if my lymph nodes do test positive, that will change to stage 2.

She has already referred me to a medical oncologist who will help us decide whether chemo or radiation are next, and after that fun it will be further constructive surgery and then hormone treatment.  All in all, she feels like my journey in the immediate sense will be approximately a year if all goes well (pounding on wood).

So – it’s not a party, but I have to say I feel so much better after meeting Dr. Bretzke and the amazing team of coordinators and nurses from the United Breast Center. This journey continues to have some unknowns, but I can say that today feels a heck of a lot better than yesterday, and that’s a start!

Most of all, our village has been overflowing with messages of hope and healing and good vibes like crazy. The kids are hanging in there, Tom found a Packer Backer (my nurse coordinator) and I have chocolate.  But above all, in the face of serious ugliness, I feel immense gratitude for the boatloads of amazing people in my life.  For an introvert – I’m genuinely surprised and humbled to have connected with so much amazingness in my life. Who knew?  Kind of heart warming to feel supported from near and far, and I thank you.

This is still going to be gross, and I’m still in need of your positive vibes when you can spare them, but there is a lot more hope today than yesterday.

In short, love ya, man.

 

The Big “C”

Yesterday I was diagnosed with breast cancer. That’s gross to even type.

The past week has been pure awful, and believe me when I say I’m trying to sanitize it here. I’ll give you the down and dirty, as that seems as good a place as any to start.  Here goes:

I’ve been doing annual mammograms since 40 – even had a baseline at 35 as requested by my doctor. Twice in the last 3 years, I’ve been “called back” for further testing, and told that I have dense breast tissue, and that I would likely be someone who gets called back more frequently.

During a regular visit with my health care provider recently, I shared with her that I felt something funky in my right breast, and she suggested I get it examined, and wrote out the order. Last Friday, I went in for the testing, and learned that I had a “highly suspicious” area that needed to be biopsied – so that happened on Monday.  Tuesday about 4:15, a very sweet nurse coordinator named Carol called to share the results with me, and I learned I have breast cancer.  (Yes, I’m leaving out a crap load of screaming, crying, a new anxiety medication that has had me sleeping roughly 20 hours/day, and every horrible thought you can possibly imagine – but that goes without saying, right?)

Here’s what I know so far, and it’s not much. I know that they biopsied 2 areas, and both have tested positive for breast cancer.  1 is called Invasive Ductal Carcinoma – Grade 1 and the other is Micro Invasive Mammary Carcinoma – Grade 2.  There will be further genetic testing results that guide the course of treatment and mean lots of crazy stuff that will be available tomorrow – but I don’t know more than what I’ve shared above for now.

I have an appointment Thursday with an oncology surgeon named Dr. Margit Bretzke who works through the United Breast Center in St. Paul. They are trying to hook me up with a Cancer Care Coordinator from the United Breast Center who helps to coordinate and troubleshoot a lot of things I can’t even begin to imagine at this point.  I’ll be grateful for that help to be sure.

We did share this news with the kids last night, though in super simplistic terms. They had been seriously lobbying to go to IHOP for the national Pancake Day shindig yesterday, and given the circumstances, it seemed like a better path to communicate about this craziness than anything else Tom & I could come up with at the moment.  I did use the word cancer, and told them the doctors need to remove some unhealthy parts from my right breast, and that I would share more as I learned more.  Henry “gets” it, and has had a teacher who walked this path and honestly shared with her students, so that helps.  E listened, said “ok” and then wanted help making a Cub Foods list.  Ada said “Eeew” several times, and I asked her why she felt that way.  She said “is anyone going to have to see your underwear?” and I told her likely not right away, but I would do my best to keep her in the know.

I’ve been fairly forthcoming here on the red couch in past years about my ongoing struggle with anxiety as it relates to parenting. It may not be a huge surprise that since Friday, I’ve been an emotional basket case, doing my very best to hold it together for our kids.  Even though the news was not what I had hoped, there is an element of comfort knowing for certain that I have cancer, and I hope as we learn more, and the next steps of this journey begin, that I’ll get my fighting spirit and sense and humor back – right now, I’m feeling kind of down and a little bit like life is kind of throwing some serious ugliness my way.  Self-pity – maybe, but for a few days, I’m going to let myself be ticked that in addition to autism, my kids need to cope with this.  After that, I hope I can find a pinch of humor in ridiculous situations, and that Tom & I will find a way for this bend in the road to teach our kids about perseverance, facing challenges as a family and how we can help one another, and most of all, the importance of a strong village.  The need of a village is not new to us as a family navigating autism – now we just need to add on in new and creative ways.

Most of all, I’m asking for a few good vibes if you can spare them. I’m not exactly certain what I am even asking for, except that reading things on the internet is not comforting.  Maybe that Dr. Bretzke will have news that is not even more devastating – and I say that knowing full well it is likely to get worse before it gets better.  Maybe that these crazy hormone tests come back well – whatever that means.

Last but certainly not least – I am thankful for all the amazing people in our lives who are able to support our family in word, deed or thought, over this next portion of our journey. My gratitude has always run deep for being lucky enough to connect with such a wide variety of awesome people, and now that feels truer than ever.  It really does take a village – heck, maybe even two!  Thanks for being part of mine.

Yesterday, as I was wandering aimlessly around the house, nervous and scared, I stumbled on a painting that Ada had been working on, and it made me smile. The inscription at the top reads “The world is full of cool stuff” and I love that her creative spirit is filled with such positive energy and beauty. I’m going to do my best to remember this even during the difficult days yet to come . . .

Community Conversations-196 Style!

There are days when trying to meet the unique needs of each of our children can feel overwhelming – sometimes even before that first cup of coffee.

Today was not one of those days.  Today I woke up with some cats (Simon & Garfunkel) not giving me enough personal space, and a 9-year-old girl smiling and singing about our solar system.  I knew – even in my sleep deprived state – that our world was just a little bit better than it was yesterday, and I couldn’t help but smile.

Here’s the deal – parenting is amazing, tiring, fun, difficult & emotionally charged – and that’s on the good days.  Throw in a little autism, a pinch of anxiety, a dash of ADHD, etc. and things can get downright dramatic just trying to get through each and every day, let alone thinking about next week, next month’s IEP (gulp) or what adulthood may hold for our children.

Last fall, I was reading a series of articles in our local newspaper about how our state is failing adults with disabilities.  It felt more painful each and every day to learn more about what is happening now for far too many adults with disabilities and what might be for my children and for all young people growing up in Minnesota with disabilities.  One of the stories had a photo of a young man picking up trash with a look of profound sadness and exasperation on his face, and it haunts me to this day.  Had he been happy with his job – no matter what it was – that would be cause for celebration.  But for this young man, trash wasn’t his deal, and his face conveyed too many years of hardship to the point where he knew his voice and his feelings didn’t matter.

It stung, and I couldn’t stop thinking about it.  Even when I wanted to put it out of my mind to focus on the here and now, I found myself waking in the middle of the night and picturing him, realizing it could just as easily be my kids or any of our kids if Tom & I are taken out by a bus, etc.

So over coffee one day with my pals Kelly & Heather (ok in truth, it could have been a margarita) we realized we had all been reading and hearing about these sad stories, and we collectively wanted to do something – anything really – to feel like we were making our own itty bitty dent in this overwhelmingly huge problem.  We’d recently attended a really positive forum in Minneapolis about new and updated special education laws, and felt kind of spunky, so we decided to approach our own Director of Special Education, Mary Kreger, and encourage our district to host something similar, but with our own spin.

For some reason, she agreed to meet with us and we then convinced our friend Jean (one of the Mpls. presenters & amazing parent advocate) and our always incredible and supportive state senators, Jim Carlson and Greg Clausen, to join us, and we all had a lively discussion.  Despite some ugly crying (no – not by the senators – but they’ve seen it from us before), Mary Kreger agreed to host a forum, and that’s how “Community Conversations” came to be.

While we could sense that there was a great deal of buzz about inclusion in our various social media groups, parent groups and talking with pals, we were not sure how many people could be convinced to leave their warm homes and multitude of other responsibilities to attend a forum on a chilly Thursday evening in February in Minnesota.  At 5:45, 15 minutes before start time, we were all a bit stressed – ok some might call it flat out panic.  Having assured Mary Kreger several times that this truly would appeal to a wide audience, we were at that point preparing to apologize to her and drown our sorrows with dozens of cookies and chat inclusion amongst ourselves.

That didn’t happen, as the most amazing mix of people filled that room to capacity and beyond.  Ok, I’m kind of weepy just typing that because it was so enormously cool!

There were a million and one fabulous things that I will carry with me when I think of this event, and while my inner-hippie optimist side is kind of glowing like a lava lamp right now, I have to believe the energy and collaborative spirit from that room have impacted some of the other attendees in unexpected ways as well.

Here’s just a small sampling of some of my highlights –

• That I got to sit by my pal during the panel discussion (another Elliott with 2 l’s and 2 t’s) and listen to him share his story, inspire the audience and then point out the awesome disco ball on the ceiling that I never would have noticed on my own. He’s awesome!
• That our Superintendent, Jane Berenz, chose to attend, address the audience and share that she got her start as a Special Educator – how cool is that? She was warm and approachable and stayed the entire time mingling with people, listening and learning.
• That Kelly, who worked tirelessly to obtain donations for fun treats and coffee, had a great conversation with a local Hy-Vee manager who shared with her their proud history of employing individuals with a wide range of abilities and how much they look forward to applicants from our area when they open in Apple Valley and Eagan later this year (can you say new IEP goal for Elliott?)
• That members of the legislature attended, served as panelists, and asked families to connect with them so they could know and understand their needs better – both parties – even those running for office chose to show up and learn!
• That there were groups of people sitting around tables learning from one another and sharing ideas and perspectives that help all of us understand and connect with one another in new ways – individuals with disabilities, teachers, administrators, parents, police officers, elected officials, siblings, UofM Psychologists/Neuropsychologists and maybe even a few middle school basketball players trying to scam cookies after their game (can’t blame them for trying!) This was beyond amazing to witness, and without a doubt will bring about positive change.  We all left with bigger villages!
• That Heather brought out those from the FAS community who don’t have the kind of awareness that other groups do and some folks affected by a local charter school that is closing its doors leaving students and families feeling worried and unsure. Building connections is a start.
• That there were a variety of people in attendance and lots of community members joining us in spirit because of work/family commitments, parenting challenges, etc. Some have even shared ideas and feedback with Mary and her team because of the invitation to the forum even if they were unable to attend.
• That while apologizing to Joe, one of the school custodial staff members, for staying way too long, we learned that his son is on the autism spectrum, just completed college and has his own apartment. Inspiring stuff!
• That Mary Kreger was so busy doing her regular “Director of Special Ed” duties, yet also determined to fulfill her commitment to make this forum happen that she actually met with us in a coffee shop on MLK day when she could have been binge watching something on Netflix or doing whatever special ed. directors do when they are not at work. That speaks volumes and conveys genuine commitment to our community as a whole.  She really is the bomb!
• That my Elliott, who considered attending but decided he’d rather wait for a different “boring meeting” (like an IEP) had a terrific conversation with me about the forum, and kindly reminded me to use my friendship skills and not to say bad words – especially jerk. I did my best to make him proud.

I remember sitting in that coffee shop together, and chatting about how amazing it would be if we could somehow bring together lots of different people and creatively think of new ways to be inclusive and partner in new and different ways as a community.  Our primary goal was the shared hope that this would have impact beyond the two hours people spent in the auditorium, and maybe, just maybe, that other communities would be inspired to do similar forums with their own personal spin that we can attend and learn from.  Time will tell, but my gut feeling is this is entirely possible.  Still, what happened last night was so much more than we ever dared to envision – and that speaks volumes about our special needs community and those connected in every way.

Today when I woke up to my little girl singing a song from her upcoming 3^rd grade music program, I couldn’t help but smile.  Today, the world is just a little bit brighter than it was yesterday, and while it will take lots more creative thinking and talking and working together, I know that Ada’s future is filled with possibility, and I can’t wait to learn what choices she will make.

I still think about the young man collecting trash, and I wish with all my heart he could have felt the energy and possibility from the forum because he inspired so much of what happened last night.  I have to believe he’s in a better place, and feeling empowered to make different choices about his life.  Maybe next time he can share his story with us and continue to inspire change?  Community Conversations #2 anyone . . .

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 . . .

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 3^rd 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 1^st when it became legal in our state. Elliott’s appointment was at 4 p.m. on July 1^st. 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 . .