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!

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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:

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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!

 

 

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 . . .