The big & the small – wow!

Family with Governor DaytonWow – what a week it’s been! April is Autism Awareness Month, and what a wild and crazy start we’ve been able to experience! I’ve wanted to sit down and write about so many amazing moments, yet, the days have been so filled that I’ve not had the time to compose anything to share here on the red couch. That, and let’s face it, I’m no spring chicken – all this crazy activity has me passing out on my couch by 6:30. Yikes!

The big deal stuff has been really big deal stuff. We had the great honor of standing with Governor Mark Dayton last Tuesday along with some other families at a press event that he held in honor of World Autism Awareness Day and “Light it up Blue”. This was awesome in so many ways it would take me a book to share the enormity of this experience. That our Governor (who is personally connected to autism as his nephew is on the spectrum) would take the time to honor families with autism and help us spread awareness means the world. That my Aunt and Uncle would reach out to the Governor on our behalf because they have known him for a long while, and because they “get” it and think the world of our kids and all families impacted by autism leaves me overwhelmed with gratitude and thanks. That my Grandma, who is a sprightly 92, got to come along and hear her Great-Grandson, who not that many years ago was completely non-verbal, step up to the podium at the Governor’s Press event and thank him for helping families with autism is something I’ll cherish forever. Crazy. Awesome. Stuff.

There were the quieter moments too. Like when sweet Ada, who loves dogs, thought about bringing Gov. Dayton’s dogs a treat, and despite a room full of people, handed Gov. Dayton the dog bones for Wanamingo & Itasca and told him she hoped they would like them. Even after a year, she remembers him getting down on one knee last April at an autism event at the capitol, pulling out his phone, and showing her pics of his then puppies, and has remembered their names all year. Later that evening, she got to see the dogs – who are now full grown, and I’ve never seen her smile so big as when Gov. Dayton noticed her in the crowd and said “Ada, they already finished the dog treats you shared”. Genuine kindness at work.

Or when Henry, who does not have autism, but is impacted by it in ways most people will never experience, got the chance, with some other kids, to hand Gov. Dayton a blue lantern in honor of his siblings and all those who live with autism. Henry, who is shy, reserved, and never chooses the limelight if he can avoid it, felt proud and honored to stand with his Governor, and despite his best efforts at being stoic, could not help but smile his rare yet charming Henry grin as the Governor thanked the kids for the lantern. It’s amazing to see his shaky confidence evolve bit by bit into the compassionate & caring adult he’s destined to become (though for now, I can’t help but adore and poke a bit of fun at his 10-year-old snarky self).

But the biggest small moment was when families were gathered in the Governor’s office following the press event. He spoke to every child in the room, asked them about school, and just made them feel important and honored. He shared with them that he realized most of them had a label after their names (ASD), but he wanted them to know that he, too, had a label (alcoholic), and that everyone faces challenges of some sort. He shared that while some things in his life have been difficult because of his label, that he’s been able to achieve many of his dreams, and he believed they would be able to as well, and that he was in their corner. Wow. I just remember pausing in that moment to fully experience the amazingness of it – not many dry eyes after that. And after a brief pause, a small voice called out “hey, do you have any candy in here?” It was perfect in every way, and no matter how much of it the kids absorbed depending on the variety of their strengths & challenges, they were made to feel valued and encouraged.

Later that afternoon, several families from the MN Autism community planned to stop by the Governor’s Residence in St. Paul to take a group photo in front of his house. The Governor’s Residence staff members had kindly offered to place blue lanterns in the windows (donated by Autism Speaks) in honor of “Light it up Blue”. We thought it might take 15 minutes and that we would not disturb anyone – just allow our kids to know that the Gov. was lighting it up at his house like we were at our house.

However, when we arrived, the gates were open, and the Residence staff was welcoming families into the Governor’s yard, and had cookies and warm cider available for everyone (as spring has not sprung in MN it was more of a cider day than a lemonade day). We were stunned – the Governor and his staff had already given a big chunk of their day to honor autism awareness, and now the kind and welcoming Residence staff went out of their way to make “Light it up Blue” special for kids and their families. The kids were playing in the yard, admiring the beautiful blue lanterns shining brightly, and it felt like a fun, neighborhood yard party. Suddenly, the front door opened, and out walked Governor Dayton, carrying the blue lantern the kids had given him at the press event earlier in the day. Amazing! He chatted with everyone, graciously posed for pics (yep, got my Christmas card photo done in April), and made everyone feel welcome. It was above and beyond our wildest expectations, but most of all, just a lovely time with a genuinely kind person who gave his personal time to kids and families with autism because he chose to. Wow.

The enormity and awesomeness of this day does not make autism any easier, and although there were a million and one amazing moments that day, there were challenging moments too. As Governor Dayton shared with us that day, everyone faces challenges in their lives, but difficulties and labels don’t necessarily have to define who you are. Autism may always be a part of our family, but we get to choose whether or not it defines us. Some days, that’s not easy, and there are times we just feel very different and wish that everyday things that are so easy for most would not be so infinitely difficult for our family. But this day, we just felt accepted and honored as we are – all the good, the hard, the easy, the ugly and the beautiful mixed up together that make us a family. Wow.

Ok – this little story would not be complete without sharing a funky Elliott moment, and those of you that know E man are not likely to be surprised that he found a way to put his personal spin on this event, as he has so many others. Every few minutes during our time in the Governor’s yard, I’d look around and say “Tom, where did Elliott go”, and then we’d notice that he was, once again, chatting with Governor Dayton (in E’s mind, his new BFF). I would hear, “I would like you to come to my house, Gov. Mark Dayton – I live in Eagan” and then he’d begin giving the Governor exact directions to our home “and then you exit on Diffley . . . “ so I would whisk E aside, and let him know that I wanted him to give the Governor a chance to chat with everyone, and that he needed some personal space as well. He assured me he was using his manners, and would give him a few minutes and then I would hear “and if you need to use the bathroom at my house, you can, Gov. Dayton” – yep, classic Elliott.

A few minutes later, as we were waving goodbye to everyone, I heard the Gov. from across the yard call out, “Goodbye, and thank you for the directions to Eagan, Elliott”. It was a beautiful ending to a perfect day. And no, we didn’t need to use the GPS to get us home from our friend, Governor Mark Dayton’s house. The E man got us smoothly onto 35E, and we then exited on Diffley . . .

Advertisements

2 responses to “The big & the small – wow!

  1. Kammy, you are an elolquent storyteller! I am honored to know you and your incredible family and can picture in my minds eye so clearly how enamored Elliot was with Gov. Dayton and your swift and gentle redirections! What a fantastic opportunity for you to experience as a family the challenges of autism as intensely as the amazing support and love that people in Minnesota have to offer. What a sweet, sweet treat! Hugs to you all! Carrie W.

    Like

  2. Thank you, Carrie! You also have a way with words – geez, made me tear up. We are so grateful to know you and have you in our corner. Thank you for all you do to support families!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s