Stimeyland Celebrates 1000 Ausome Things, Some of Which Are You!

Today is the last day of Autism Awareness/Acceptance/Giant Hug Month and some folks in the autism and autistic communities are celebrating with another Autism Positivity Flash Blog!

This time around, bloggers are sharing some Ausome things in their lives. I know a lot of Ausome people. I feel very lucky to know a lot of Ausome people.

(I feel so lucky to know those Ausome people that I will call them Ausome even if I feel vaguely uneasy using the word “Ausome” because it isn’t a real word AND has iffy capitalization. You can take a girl off the copy editor’s desk, but you can’t take the copy editor out of the girl.)

Click that graphic up there to go to the flash blog site to read the great stuff there. If you want to read something that I wrote (even if it isn’t technically for this, but I wrote it and it’s about autism, so there), you can check out Acceptance Begins at Home, which I wrote for the Autistic Self Advocacy Network for Autism Acceptance Month.

There are a ton of great posts on the ASAN Autism Acceptance Month website, as well as a huge number of fact sheets for parents, autistics, and professionals. Spend some time poking around over there and I think you’ll find some stuff you like.

Also, if you’re looking for posts about autism awareness from the parent perspective, Lisa of Autism Wonderland put together an amazing piece at Babble featuring some wonderful posts on this very topic.

*****

Also, not for nothing, a new Costco opened in my neighborhood and now my family has nearly unlimited opportunities to buy things we don’t need in enormous quantities. I wrote about why you shouldn’t take your children to such a place for White Knuckle Parenting. (Although I totally take my kids there all the time.)

*****

AHEM. CAN I HAVE YOUR ATTENTION? YOU ARE AWESOME.

Yesterday I asked for your help with the Montgomery Cheetah’s upcoming Cheetah-thon fundraiser. In addition to the wonderful people who had already donated, even more of you stepped up and chipped in. We’re already over the $500 that Alex and I are going to match.

I cannot thank you all enough.

But I’ll try. Thank you to Lisa, Meredith, Gayle, Jen, Diane, Cheryl, Bec, the Martinez family, the Pedulla family, and the Coppenrath Girls. YOU MAKE MY HEART SING.

Our new Team Stimey Cheetah-thon total is $720. That doesn’t even include our matching funds. I can’t even tell you all how much that means to me. If you haven’t donated yet and would like to, you can do so on the Cheetahs’ FirstGiving site. Be sure to mention if you’re donating for Jack so I can send air kisses your way. Because that is what I am doing right now.

All of that is pretty Ausome, huh?

In Which I Beg You For Money (Wait! Don’t Click Away!)

I feel like I haven’t bludgeoned you all over the head with information about Jack’s hockey team and their upcoming Cheetah-thon fundraiser quite enough yet this year. Maybe that is because I still have a post to write about some of the fun things Jack and I did in Lake Placid and I keep thinking that I will bludgeon you then, but I figured while I am “in the process of writing” (aka, staring blankly at my computer screen), I would take a moment to tell you how much it would mean to me and to all of the other Cheetahs families if you would consider donating to our Cheetah-thon.

Jack is the one with the arrow pointing at him. Wouldn't it be funny if I had the arrow pointing at some random kid?

Jack is the one with the arrow pointing at him. (Wouldn’t it be funny if I had the arrow pointing at some random kid?)

I took that photo above at Jack’s last practice of the season, which took place a little over a week ago. Jack has been skating with the Cheetahs for three years, and three years I have known that this is one of the most incredible things I have ever been involved in.

There are dozens of athletes that play on this team. There are dozens of mostly high school-aged mentors who help those players learn hockey skills. Those dozens of mentors have parents who drive them to early morning practices every Saturday and who plan our Cheetah-thon as part of Bar Mitzvah projects. There are dozens of family members of Cheetahs who watch their children and brothers and sisters with pride in their hearts as they see just how incredibly capable these athletes are. There is a whole team of coaches and volunteers who plan drills, coordinate ice time, organize the mentors, plan tournaments, and skate with the players.

I’ve said it before: Special hockey matters. There is magic in special hockey.

The Cheetahs have a direct day-to-day impact on all of those people that I mentioned above. Jack has made so many friends through the Cheetahs. He’s become stronger physically and he’s become braver mentally. He gets to be a part of something. That is huge.

Then there is the ripple effect. All of these players, mentors, and families reach other people, talk to other people, let them know how amazing these Cheetahs are—not just on the ice, but as people. The magic of special hockey spreads. The message that these young people—typical and with disabilities—and what they do, what they ARE, matter.

If you are local, please consider joining us on May 11 from 5-7 pm at the Rockville Ice Arena for our Cheetah-thon. Hang out, participate in our raffles, and if the spirit moves you, get on the ice with our wonderful players and mentors. Team Stimey will be there and we would love to see you!

If you can’t come in person, I would be so grateful if you could donate to the Cheetahs. This money goes toward ice time, tournament expenses for players who otherwise couldn’t go, and other expenses that directly help these players. The Cheetahs are an all-volunteer organization so you can feel comfortable knowing that all of your money will go directly to the players. It’s tax deductible too!

You can donate on the Cheetahs’ fundraising page or by mailing a check to the address listed there. Be sure to mention Jack if you are donating in his honor so I can thank you. Also, Team Stimey will be matching donations made in Jack’s name up to $500 total. Your $5 donation will become $10! Your $50 donation will become $100! Your $1000 donation will become…well, $1500. Anything helps. And anything is appreciated—not just by me but by the entire Cheetah Nation.

My medium-sized champion thanks you too.

My medium-sized champion appreciates it too.

Thank you so much to all the wonderful people who have already donated to the Cheetah-thon. Mir, Michal, Laura, Stacy, and my mom and stepdad, you are making magic. Thank you.

Team Stimey’s Cheetah-thon total thus far: $300. Wow. You guys are awesome. See? Magic.

Meet Bean Clawdia Josie MooShroom Francis Fleur Hermione Hippo

In case you don’t remember, at our last meeting I asked you all to give me suggestions for names for this little girl:

Wait, what? Me?

Wait, what? Me?

You did not disappoint.

It almost—ALMOST—makes me wish I had 40 or 50 more gerbils for all of you to name. If any of you are trying to name a pet, please check out the comments on that post, because not only will you laugh hysterically, you will also get many, many good ideas.

I'll wait here while you do that.

I’ll just wait here and chew on this while you do that.

You can see how difficult this decision was for me. But a decision had to be made, so I buckled down and laughed my way through the list several times only to notice that I kept coming back to Lisa’s suggestion for Edwina Scissorpaws. I couldn’t get it out of my mind. I did not, however, care for Edwina. But then my friend Jen, who was in town visiting me for the weekend, suggested Edie Scissorpaws.

SOLD!

Call her Edie, call her Scissorpaws, just don’t call her after midnight.

IMG_6471

Meet Ms. Edie Scissorpaws. She will cut a bitch.

Thank you all for your suggestions! You make my funny bone happy. And a huge thanks to Lisa and Jen for making Edie’s funny bone happy.

*****

Jack had an IEP meeting yesterday afternoon and it was smooth and easy and I don’t think we were pushed around by the system. After putting in a lot of years at IEP meetings where, even though his team was amazing, I walked out with a clenched jaw from the stress, it was lovely to spend a pretty relaxed hour saying nice things about my kid and his teachers. I reflected on this over at White Knuckle Parenting: Doing Time at the IEP Meeting.

This Gerbil Needs Your Help

What gerbil?

This gerbil.

This gerbil.

Right now this adorable little gerbil, who I am, oh, let’s say 92 percent sure is a girl, doesn’t have a name. (She also doesn’t have a manicurist, but I’m hoping that she develops a nail chewing habit to shorten her vaguely terrifying claws.)

Right now this adorable little girl only answers to She Who Shall Not Be Named, and that is, frankly, a little bit cumbersome for such a tiny girl.

This is where you come in. I need name ideas. Naturally, you should understand that I might disregard everything you all say and end up naming her Hippo or something. I do at least want to know that I’ve explored my options. Before you offer me suggestions, however, I feel like you should have the whole picture.

The whole picture starts with this picture:

OMG OMG OMG OMG I AM FREAKING OUT!!!!

Remember this?

She’s a lot cuter now, right?

I do think you need to know the names of the other gerbils so you don’t name this one something like Tyler when I’ve named the other James, Jordan, Jenny, and Jimi. This will also serve as something of a coming out party for the gerbils. You are welcome to send them debutante gifts if you deem it appropriate. Perhaps small, lacy hats?

This little guy is Creeper:

Quinn named this one.

Quinn named this one.

You should be aware that most of these animals are named after Minecraft characters.

This next one is the other boy. He is King:

Sam named him. I don't feel that he gave the naming exercise his best effort, but now we're stuck with King.

Sam named him. I don’t feel that he gave the naming exercise his best effort, but now we’re stuck with King. I would have named him Spider Whiskers.

I moved King and Creeper over to BoyTown yesterday. Mouse seems to have accepted them into his home, which I was a little worried about. I found them all sleeping today in a big ol’ boy pile—or they were mating and getting ready to have 1800 new babies. One of the two.

The reason I’m naming the gerblets now is because before they were separated, it was impossible to tell some of them apart. Fortunately it didn’t turn out that all the white ones were girls and the brown ones boys because that would have been a huge problem for me.

Okay, on to the girls.

Since the gerblets were born, Jack has insisted that one of them be named Jeffery. Jeffery comes from Minecraft. Today I asked him who Jeffery is and Jack said, “a pig,” and I just nodded and moved on because Minecraft? I do not understand you.

Well, I did my math wrong and by the time I got around to double checking with Jack that he really wanted to name his gerbil Jeffery, I was plumb out of boys. Fortunately, Jack can be flexible.

Meet Jefferie.

Meet Jefferie.

Last but not least, you know Spike, sometimes known as Spike the Badass and sometimes known as Spike the Wonder Gerbil. I remember back when I worried that she wasn’t going to live very long. Turns out that she is hanging in there like a rock star and is totally working her little misshapen hand.

I like that she always looks like she's waving at me.

I like that she always looks like she’s waving at me.

Spike is definitely the runt, which I’m sure has to do with her paw. She was smaller than everyone else and it took her longer to grow fur and to open her eyes, but now she seems to have totally adapted, having figured out how to hold her food and scamper around with a semi-functional limb.

The others love her as much as I do too. Take for example Jefferie kissing Spike:

See Jefferie kiss Spike.

Spike is all, “Get the fuck offa me, will ya?”

Which brings us back to She Who Shall Not Be Named. We must name her.

Help me! I don't want to be named Hippo!

Help me! I don’t want to be named Hippo!

I’m ready. Give me your best suggestions. Bring the lunacy.

Keep Moving Forward

A few years ago, a friend of mine was nervous about a race she was getting ready to run. Her brother gave her some brilliant advice: Just keep running forward.

He might have followed that up with some smartassery about not going backwards, but I wasn’t there to hear it, so I won’t take any liberties with this hearsay between siblings.

Regardless, this has become an important mantra for my friend and I: Keep Moving Forward.

It is applicable in many situations.

I love to run. I absolutely really truly love it. Even on days like today when I am tired and the last thing I want to do is to start hopping from foot to foot in a forward direction, once I take those first steps, I’m sold. There is something so calming and regulating about running, about putting one foot in front of the other and finding yourself miles away from where you started.

Keep moving forward is the best, simplest advice for anyone who is struggling with running. Fast, slow, whatever…just keep moving forward.

I wish I had words of wisdom about what happened at the Boston Marathon, but I don’t. All I can say is that we all have to keep moving forward. I am sending my love to my friends in Boston and everyone at the race. I’ve been thinking of you constantly.

*****

I actually wrote about running for White Knuckle Parenting this week. I just restarted running last week after taking most of March off and I have been trying to figure out how to get my runs in with my kids hanging around. The trick, per usual, is probably to keep moving forward.

Miracles on Ice

In hockey circles (and probably a fair number of other circles as well) Lake Placid holds a special place. It was there, at the 1980 Olympics, that the USA hockey team famously defeated the heavily favored Soviets in the game that would come to be known as the Miracle on Ice. I was only 7 in 1980, but people older than me (or just maybe more, you know, aware of things) remember this game not just for the hockey but for the Cold War symbolism it held.

With five seconds left in the game, when it became clear that the US team was going to prevail, sportscaster Al Michaels shouted, “Do you believe in miracles?!”

I know this for several reasons:

1. I have watched the movie Miracle on the team bus on the way to every single one of the four hockey tournaments Jack and I have gone on.

2. The folks at the Olympic Center in Lake Placid show the last few seconds of that game at every single opportunity available.

3. I run in hockey circles.

Now, this may not have a lot to do with Jack’s team, the Montgomery Cheetahs and the 34 players that drove north to play, or any of the other special hockey teams that gathered in Lake Placid last weekend for this CAN/AM tournament.

Or it just might.

As I wrote elsewhere, the Cheetahs’ head coach stood at the front of the team bus just a few minutes before we arrived back home late on Sunday night. He told us that he had known some of the players who had skated in that famous game. He told us that this tournament was the first special hockey tournament to play on that revered ice. He told us how he felt standing on that ice with the players he works so hard with every single week.

“As I stood on that ice,” he said, “I thought about these 34 miracles that we brought with us.”

Now, I’m not a miracle girl. I really don’t believe in miracles. I’m not one to call a disabled person who plays hockey a miracle. (I call them athletes—and, for the record, so does the coach.) But I understood exactly what he meant and the warm spirit with which he meant it.

I struggle after every single hockey trip to let you know what it is like at these tournaments. I mean, it’s like any other away game trip, right? Kids play games. Some have rough days. Some have incredible days. You swim in the hotel pool. You explore the town. It’s just a team trip, right?

But it’s not. Part of it is that some of these kids won’t get a lot of opportunities to travel for sports. Part of it is that these tournaments are a space where it is safe for these players to be themselves. Part of it is that these players, who have to work so hard in everyday life, are heroes on the ice. Part of it is that the players get to relax and form friendships, something that can be so hard for some young people with disabilities. Part of it is that these players put on a ton of gear and kick ass at a sport that you and I would probably suck at.

But it’s more than that.

I have never seen nor experienced such sportsmanship, respect, and camaraderie as I do at these tournaments. There is competition and there are fierce match-ups, but there are also games where on-ice rivals help each other and make sure the puck gets to players that don’t skate as fast or that don’t have the same skills. I’m not talking about the coaches. I’m talking about the players helping each other. I’m talking about inter-team congratulations, celebrations, and encouragement between players. I’m also talking about teams skating as hard as they can to win. There is that too. There is some fantastic hockey at these tournaments.

There is a spirit of being in it together—of understanding that if I add more water to your harbor, my ship rises too.

And there are smiles. The team coaches skated for hours and hours over the course of the tournament. I never saw any of them without a smile. The players’ faces are hidden behind face shields, but even a face shield can’t hide the smiles they have. My Jack, who struggled so mightily at his first tournament a couple of years ago, was calm and regulated for much of the trip. He isn’t yet totally aware of the shared harbor and the rising ships, but he is starting to see it. He was full of smiles this weekend.

IMG_6150

I mean, there are tears too, but even that gets taken care of by the hockey family. Jack fell during one game and he cried because his head hurt. One of the coaches took him back to the bench where he lifted his face cage to wipe his tears, standing between Jack and the rink, physically using his body to shield my boy’s face from flying pucks and to make him feel better. And it worked. Your baby is my baby.

I could go on and on. I wish that all of you could attend a special hockey tournament. I wish all of you could experience what the players and families experience at these things. I wish my words were adequate, but they simply aren’t.

Special hockey. I’ve said it before, but special hockey is magic. I might not believe in miracles, but you’d better understand that I believe in magic.

In 1980, before Team USA took to the Olympic ice to skate against the Soviets, head coach Herb Brooks told his team: “You were born to be a hockey player…You were meant to be here…This moment is yours.”

I feel like we could have said this to every single player who was on the ice last weekend. They all had their time at the tournament. That moment was theirs.

THAT is what the Miracle on Ice has to do with special hockey.

IMG_9408

*****

I mentioned in my last post that some of the money raised from last year’s Cheetah-thon fundraiser went to help families pay for this tournament. The Cheetahs know how expensive it can be to raise a special needs child and they never want money to be a barrier to getting to experience trips like this one. We are holding another Cheetah-thon on May 11 from 5 to 7 pm. Team Stimey will be in the house. I would love it if any of you locals came to skate with us. I would be honored if you would consider donating to this year’s Cheetah-thon. Be sure to make a note when you donate if you are doing so in honor of Jack, so I can be sure to thank you.

I also want to thank some other people here. The Cheetahs are an entirely volunteer-run organization. The people who make sure the team keeps running all have jobs and families and other things they like to do with their time. They work extremely hard all year long to make Cheetah practices and tournaments happen. Many thanks to Cheetahs director Sean and tournament cruise director David for everything. Thank you to Coach Rob and to Head Coach David. You guys made magic last weekend.

Fine. Miracles too.

Special Hockey: Do You Believe in Miracles? from Mark Miller on Vimeo.

*****

Coming soon…

The day Jack and Jean went bobsledding. Like bosses.

Intermission

I am going to take a quick break before I continue on to tell you the rest of the story about Jack’s Cheetahs tournament. Hopefully I’ll get to that tomorrow. Until then, you can read about our return bus trip over at White Knuckle Parenting. I’ll tell you something; that wasn’t the best part of the trip—but I’d do it again in a heartbeat.

While you do that, I’ll be trying to dig through all the things that happened while I was away. It turns out that all of you continue to, I don’t know…exist even when I’m not monitoring you. That is problematic for me. Just so you know.

I would also like to point you to something else really exciting that happened yesterday. (No, not more gerblets.) Babble put out their annual list of top autism blogs and it turns out to be a really great list, full of autistic people, autistic parents, and non-autistic parents of people with autism. Also, I’m one of those people.

I’m pretty sure my selection has something to do with the gerblets.

I want to wholeheartedly thank Babble, as well as the selection panel who put me on this list. It means a lot to be included with these incredible writers.

Now I just have to figure out a subtle way to drop this information into every conversation I have.