Autism Mom Angst

Saige 2Ok – I’m just going to lay it out there, friends – I’m stressed out. Wow – life can become overwhelming, even when it’s mostly good stuff. I’m dealing with balance (I know, who isn’t, right?) and kind of feel like I’m on a train that can’t stop. Crap. Worst of all, my kids are now starting to be affected, and so it’s time to make some hard choices. I don’t like Ada telling me “My Mom always has a meeting”. As much as I’m involved in a bunch of really cool things – it’s just too much.

Not surprisingly, I’ve felt this way before in April. I remember last April saying – never again will I sign on for that much – yet here I am. Sure – it’s all great stuff, but my youth is long gone, my kids need help with homework, and my cats need a lap to occasionally plop in (they might be more frustrated than my trio). Thankfully – April is coming to an end, and while it’s been a pretty amazing Autism Awareness Month, I need a nap.

It’s not just too many meetings – I’m struggling with a lot of anxiety about middle school transitions, IEP meetings, puberty, planning an appropriate but not too ambitious summer schedule for each child, and Ada’s therapy coming to an end – all in the next couple of weeks. Well, to be fair puberty will not be complete in 2 weeks, but I can wish it would.

While this is not a secret – I don’t do well with change. My kids & I share that trait, and I’ve always been that way. Risk averse, don’t change what’s working, discomfort with the unknown, etc. Most of the time, I just need time to freak out privately, and then move ahead – and almost always, things turn out fine – if not better. Believe me when I say that while my challenges with change may be different than Elliott’s, & I can mask my discomfort marginally better, I “get” his need to know exactly what route we’re going to take (without any deviation) when we go to Target. He’s had to work hard to overcome some of his need for sameness/routine, and it’s not been easy. I can relate in my own way.

So I’m dealing with a lot of change, and I’ve been overcommitted. Guess what, I’m more than a little unpleasant. The kids walk through the door from school and immediately give me that look like “you are generally unpleasant of late, you may want to think about washing your hair, and I’d rather not share with you that my clip was on take a break”.

I sensed my edginess on Sunday when the kids had their weekly swimming lessons at the Y. We’ve been taking lessons for a long while, and because our routine is quite well established, it’s generally a very successful experience. For whatever reason, there was a lifeguard on duty that day that we had not seen before, and for reasons I don’t understand, she just had it in for the E man. I sat on the bench, watching Henry and Ada during their lessons, while Elliott had free swim time. He was going from the slide pool to the lap pool (they keep one lane open just for lap swimming), and as he approached the lap lane, she brusquely told him he needed to swim laps and not horse around in that pool. All well and good – except that the teenage guy in the lane pool was doing handstands, stopping in the middle of the pool, dorking around, etc. She said nothing to him, but when E paused once, she lit into him. Soon, E left for the other pool, and a group of girls much younger than E got in the lane pool and began horsing around while an adult did his best to try to swim laps around them for 15 minutes. The lifeguard said nothing to them– until Elliott walked over. At that point, I was ticked, and so as she approached him, I interrupted her, and said “Ma’am, I’m taking care of this” – she gave me the wicked witch look and stomped off.

All week I’ve been thinking about this – why did it bother me so much? Was I being overprotective because he has autism? Should I have confronted her more directly or should I have just let the whole thing go? Would I have had the same feelings if this had happened to Henry, who does not have autism? Is this just a Mom thing, and does it even have anything to do with autism at all? Worse – am I becoming a helicopter Mom? There are a lot of jerks in the world, and life is often not fair & maybe that’s the lesson – wow, maybe I just have PMS?

In the end, I’m still mulling it over. I know it had an impact on E because he asked me if he could approach her and ask why she was so cranky (yes, I’m grateful he asked before just doing it – this is progress). I could tell he felt a little unsure about what he could and should be doing, and was just trying to have fun before his lesson. But I sensed that because I could feel myself getting angry, that I was likely not going to handle the situation in a way that would be beneficial, and even less likely – as a good role model for conflict resolution in front of my children, so I bit my tongue and went home.

Because I’m still thinking of it – something tells me if I see her again this Sunday – I’m going to choose to be proactive rather than reactive. I don’t like to out my buddy about his autism unless it becomes necessary and more and more, I feel like that’s his call. But I also don’t want to push a lifeguard into the pool in front of my children. Instead, I will chat with her upfront, and keep the ugly thoughts in my thinking bubble. At least – this is my plan.

Besides – Ada inspired me today, I feel the positive energy returning & I washed my hair. Ada aka “Batman” – who does not like pink, anything remotely girly and especially not Dora who she calls “Dorka” thanks to having older brothers – wore high heels today. And yes, it was her idea – with socks (of course) and a bun in her hair with a pink donut twist sticking out. This would be miracle enough – but there’s more. While watching an episode of that horrible show – “Annoying Orange”, she saw a commercial for the new American Girl Doll – “Saige” and shared with us “I would like Saige for my birthday”. Who is this child, and where did my Ada go?

While I kind of dig Ada’s independent spirit, and would not care if she always chose super heroes over Barbie (admittedly as a child I only used my Barbie RV to put my cat in and speed him across the floor), I am proud of her ability to consider and try change. True, “Saige” seems to be the most rugged of all the American Girl Dolls – but maybe that’s why she feels a connection. They are both tough broads. Or – maybe Batman will choose to wear heels with her cape? Either way, change is coming & I have a feeling we’re all going to be ok.


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 . . .