Category Archives: bloggy love

Proud

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I’ve been pretty excited about January 21st for a long time. My family always celebrates MLK Day with a big todo and when it fell on the same day as President Obama’s inauguration? Well, I was ready to celebrate.

We were going to watch the inauguration on TV and then MLK’s I Have a Dream speech on YouTube and then we were going to have cake and it was going to be great.

Things changed though, when Jess from Diary of a Mom, who does so much fantastic advocacy work, ended up with an extra ticket to the inauguration, and I jumped on her coattails and rode them all the way to DC.

Algernon rode her coattails too.

Algernon rode her coattails too.

I have a lot to say about our amazing day in (and eventual escape from) DC, but you know what is exhausting? Inauguration Day. Or more specifically, getting away from Inauguration Day. I will tell you all about it tomorrow.

Before I go to bed though, I will let you know that after I got home, we very happily watched Dr. King’s speech, complete with lively commentary from my three kiddos.

Then we sang happy birthday to Martin and had our cake, which was delightful.

Sam insisted on chocolate. Because, you know.

Sam insisted on chocolate. Because, you know.

In sum, today is a day that I was proud to be an American and proud of the leaders and heroes we get to learn from. It was exciting to be able to listen to the president and his terrific speech that was so much about equality and fair chances and then come home to kids who are so very interested in figuring that whole thing out for themselves.

So, not just proud to be an American, but proud to be a parent of such great little kids. (And proud to be a friend to the wonderful Jess. Thank you so much for taking me with you. You are a blast and a half to hang out with.)

Happy Inauguration Day, America. And Happy Birthday, Martin!

Disconnected and Random Stuff from BlogHer

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Aw, friends. You all are my favorites. All of you make being me so easy. I’m sure I will have more to say on the subject, but I want to tell you more about BlogHer and New York.

Algernon tore that town up.

Those are his drink tickets.

There is absolutely no way to fully explain what BlogHer conferences mean to me. I could try. I could try to tell you about the people and the joy. I could try to tell you how I was inspired by speakers and panelists. I could try to tell you how I met some new favorite people. I could try to tell you all the practical information I picked up in some of the sessions. I could try to tell you how I missed Susan. I could try to tell you about some of the very valid criticism of the conference that I heard and how most of it didn’t matter all that much to me. I could try to tell you about how much fun I had.

I could try to tell you all that, or I could just tell you about some of the silly things that stick out in my head, because it is way easier that way and the post will be only a million years long instead of six million years long. Also, maybe tomorrow I’ll tell you how Algernon got along in New York.

I got to New York on Wednesday evening because even though the conference officially started on Friday, they had a HealthMinder Day on Thursday that had a special needs track full of my people.

But before Thursday, I had to get to my hotel. I walked out of Penn Station only to find a horrifically long taxi line. And it was raining. And I was all, “There has to be a better way,” but I didn’t know how to use the subway, and I was afraid that I would annoy New Yorkers if I tried to walk down rush hour sidewalks with a suitcase, and I worried that if I walked a block away to try to get a cab, that I would self-destruct and spend the weekend curled in a ball in a doorway under my suitcase instead of at the conference.

So instead, I stood in line for an hour, which gave me a lot of time to practice saying, “I am going to 6th and 53rd. I am going to 6th and 53rd. I am going to 6th and 53rd.” Which I did. And it worked! I made it to the hotel, just in time to meet part of my gang of autism moms (and we ARE a gang) and go out to dinner at John’s Pizzeria—NO SLICES!

Eventually I ran into my roommate, Annette, and we had security called on us because we were apparently talking too loud in our room. I’m going to put that on third roommate, Algernon.

He’s a loudmouth.

HealthMinder Day was wonderful, mostly because I got to hang out with my special needs blogging friends, who mean so very much to me.

From there I headed with some friends to the American Cancer Society’s Hope Lodge. I hadn’t known about this facility before, but the Lodge is a place for cancer patients who are being treated in Manhattan to stay free of charge. It is beautiful and such a wonderful resource.

We were there to remember Susan by painting tiles for her that will be put together in a larger art piece in her honor.

She is so beautiful in that photo.

That is also where I got to start hanging out with Susan’s best friend, and one of my personal favorite people, Marty, a.k.a. Canape. I adore that woman. She’s fun.

And preeeettttyy.

I didn’t go to any fancy parties this year, but I did get out of the hotel to go to restaurants and to see some of the city with friends. It was perfect and relaxed and fun.

One of my high points was the Nintendo World Store, which I went to because I got a gift card to spend there because I am a Nintendo Brand Ambassador. More on that and the joy it brought my kids later. For now, this:

And, yes, this DOES make me the coolest mom.

Also, I might have gone to the Nintendo store and bought a chess set for my kids, but Bowser is the king, so I think it’s still okay.

The Voices of the Year reading is always one of the best events of the conference, and this year was no different. We listened to 15 amazing bloggers read their work and then there was a reception to honor them and the other hundred or so bloggers whose work was being honored.

Hmmm. I wonder who those hundred bloggers might be?

Why, look! One of them is me!

The expo hall was huge this year and I definitely made my way through it, although it was Algernon who made the most of the exhibits. I don’t do much work with brands anymore, so it’s not all that relevant to me. There was one piece of swag though that I walked all over the hotel to find.

It’s okay to scream in terror.

I love my stuffed Hot Pocket with sunglasses, arms, and tennis shoes. I will call him Percival.

There is one more place in the expo hall where I caused a HUGE scene and that was at the Jimmy Dean booth. I don’t know if you remember two years ago when I ran into the Jimmy Dean sun in a 29th-floor hallway at BlogHer, but it was a big deal to me.

So, when I rounded a corner in the expo hall and saw him again, I may have shrieked a little bit. I reminded him of our meeting in 2010, but I don’t think he remembered. Then I made him take his photo with me again.

YOU GUYS, IT IS THE SUN!!!!

And then I made him take his photo with Algernon.

It gets even more degrading from here.

I think the Jimmy Dean people loved it. It was like there were paparazzi, all for Algernon and the sun. I may have done some extensive jumping up and down and clapping.

Thanks for humoring me, friends at Jimmy Dean.

Then, they wanted to interview me because I probably looked like someone who ate a lot of Jimmy Dean and they were all, “How does Jimmy Dean fit into your life?” and I had to say, “Um. We don’t eat Jimmy Dean products, but I really love your commercials.”

By the time I left on Sunday, I was ready to go home and see Alex and my munchkins. I successfully navigated getting to Penn Station with Annette and got on my train and found a seat all by myself. And then at some point, I got off the train with my luggage at the wrong station and had to re-board in shame.

It was awesome. (<—sarcasm) And a very Stimey thing to do.

But at the end were these little dudes, which made the re-boarding instead of living in God Knows Where, Baltimore worth it all.

Now do something funny for blog fodder, mmmkay, kiddos?

*****

I wrote about what it is like to be away from my kids at White Knuckle Parenting this week. And last week I think I forgot to link to my column there in which I wondered if my kids would have survived in Olden Times.

You All Are the BEST.

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Aw, you guys. Thank you.

I’m usually pretty chill about publishing stuff here, but I was a little freaked out about my last post. Usually I write, revise, edit, reread, and publish, all in short order. That last post stayed in my drafts folder for quite a while as I tried to find the right words.

Late last night, I clicked publish, pushed the link out on Facebook and Twitter and went to bed before feedback could come back in. I was nervous. But you guys were so great to me. Thank you.

I feel like I’m always saying that to you guys. You all are so good to me. I appreciate you so much.

I read every comment, email, Facebook message, and tweet at least twice, from both some of my oldest friends and from some people who are new to me as of today—and many folks in between. I love you/it is a pleasure to meet you and thank you so much for your support. I haven’t had a chance to respond to all of you, but I will. Until I do, you should know that every word you wrote to me was meaningful.

*****

I seems a little gauche to thank you and then advertise a link, but as long as I have you here, I might as well send you over to Autism Unexpected, where I wrote about taking Jack to his school’s end-of-the-year carnival. Just don’t look too much at the photo that accompanies it. I didn’t choose that photo and, in fact, it kind of stresses me out to look at it. Just scroll right down to the words.

I’ll probably write more often over there now considering that I’m not writing my White Knuckle Parenting column anymore due to budgetary reasons. (Theirs, not mine.) They were lovely to me over there at the Wheaton Patch. I miss them.

A Brief History of the Weekend

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This was a big weekend for Team Stimey. Saturday was not just Jack’s birthday, but also the Cheetah-thon. Sam had a soccer game. My mother-in-law was in town visiting. Sunday, of course, was mother’s day, so I was busy sleeping in and going to the park with my kids and having friends over for dinner.

I have lots of thoughts about these things and even more photos. The only problem is that I am too exhausted to do any of these topics justice right now. So what Imma do is give you this photo of Jack on his 9th birthday.

Such a rock star.

Yeah, it’s a little weird to get your 9-year-old son a pashmina for his birthday, but it’s a sensory thing for him. One of his teachers lets him borrow her scarf at school, but he needs his own now that he’ll be going to another school. Also, last week he asked for “a shirt with flowers on it that will make me look like a Hawaiian.”

Done.

I’m also going to give you this photo of Jack and his coach at the Cheetah-thon.

This photo gives me the warm fuzzies.

Jack was so happy during that skating session. He was grinning and laughing and skating with his coach and skating with his best friend and just so…happy. This is why I write so much about the Cheetahs. This is why special hockey means so much. This is also why I want you to pay attention to the next paragraph.

The Cheetah-thon was a rousing success. Do you want to know one of the reasons why the Cheetah-thon was a rousing success? YOU. YOU helped do this. YOU donated $10 or $50 or $200 or you tweeted about the Cheetah-thon, blogged about it, shared a post about it on Facebook, or commented on one of my posts about the Cheetahs. You let the Cheetah Nation know how much you care about them. Trust me, they noticed.

At the Cheetah-thon, the coach stood in front of the attendees and told the players, “If you’ve ever wondered if you were special, just look around you. All of these people are here for you.”

YOU were there for the Cheetahs. Thank you.

Speaking of which, thank you to Jessica and Stephanie and their families for being the most recent Cheetah donors for Jack. Also, a huge thank you to Sandie and her family (and everyone else who showed up) for coming to the event. A very special thanks to Justine for helping too. You know why.

I promise to tell you more about the Cheetah-thon. Mostly because I can’t damn shut up about it.

Before I go to bed and put a close on this weekend, however, here is one last photo of my birthday boy.

That cake is kind of the perfect metaphor for Team Stimey: sort of weird looking, a little quirky, but delicious and full of love.

(Seriously. Take a bite out of Quinn some time. He’s the tastiest of all. Kinda minty.)

Motherhood on Stage

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Last Sunday afternoon, I had the privilege to go here…

…and do this…

…in front of these people…

…with these amazing women.

It was quite an experience.

 

There were 14 of us who spoke last Sunday in the DC version of Listen to Your Mother. In that photo above, from left to right, you will see: me!, Elena Sonnino, Lindsay Felix, Nicole Crowley, Lis Fogt, Cindy Green, Sue Wagner (at the podium), Stephanie Stearns Dulli (also the director), Sarah Braesch, Chrissy Boylan, Anna Whiston-Donaldson, Monica Sakala, Kate Coveny Hood (also the producer), and Devra Gordon.

It was an incredible experience. Based on what I’ve heard from people in the audience, it was for them as well. The stories we told ranged from hysterically funny to tragically heartbreaking, and sometimes both within the same reading. It was an emotional couple of hours, that is for sure. It was an honor to share the stage with those 13 other women.

It was also a hell of a lot of fun. I haven’t been on a stage like that for years. I will not tell you how many years, because it makes me sad that I could change the “years” in the previous sentence to “decades.”

Special thanks have to go out to Stephanie and Kate, who worked so, so hard to put together such an incredible show. I can’t even imagine how much work it was. For me, all I had to do was to go on a hard-target search for jewelry featuring squares instead of circles. It was surprisingly difficult, especially when you consider that the square is one of the, like, three main shapes.

Why squares, you ask? Because I read an edited version of my post Not Even Wrong, in which I wrote about square pegs trying to live in a round hole world and I wanted to show solidarity with the square pegs.

The video version will be available on YouTube eventually and I will be sure to post it here. Until then, here is what I said when I stepped to the podium:

I am always apprehensive about parent-teacher conferences. See, my 8-year-old son, Jack, is autistic. He goes to school in a mainstream inclusion third grade classroom and even though I always hear at these conferences that he is very smart, that he is “making sufficient progress to meet goal(s),” I am always waiting for the other shoe to drop. I never really hear anything that surprises me, but I still feel angst walking in to those meetings.

Last fall’s conference was different. I’ve noticed Jack struggling more and more this year. I’ve started to wonder if an inclusion classroom is the best setting for him. I’ve started to see his autism-specific deficits bumping up against the curriculum. I’ve started to see the social divide between Jack and his peers widening.

Third grade is where it starts getting harder for Jack to slide by just because he’s bright, his teacher told me.

Then she blew my mind. She showed me some examples of his work and went through his answers. She showed me one worksheet and said, “I didn’t know how to grade this. It’s not even wrong, but it’s not right.”

I gasped when she said those words, when she said, “not even wrong,” See, that is the name of one of my favorite books on autism by author Paul Collins.

That phrase—Not Even Wrong—refers to what was originally a derogatory way of dismissing someone’s answer to a problem. It’s not right, it’s not wrong, but the solver’s frame of reference is so far off base that it is not even wrong. It perfectly describes autism and it perfectly describes Jack.

It also perfectly encapsulates what I want for my kid—a place, an existence, where it is okay for him to be not even wrong. Because I love the way Jack’s brain works. I love the way autism has given him this unique perspective that lets him come up with some of the most amazing things. I adore his not even wrongness.

I want him to find a way of life where starting from a fundamentally different point of view is an asset to him and where he can be valued for that.

In his book, Collins wrote, “Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”

I want to help find more square holes and I am trying to get to the round holes and make them at least trapezoidal before my kids and your kids get hammered into them. I want to spread awareness of both autistic kids and autistic adults. I want this to be a world where it is okay to be a square peg without having to pretend to be round.

I don’t want to change Jack. I want to change the world.

A few weeks before my conference, I started trying to change the world by changing Jack’s class. I went in, armed with nine pages of notes, and I told Jack’s classmates about autism.

I told them how each one of them is different and how they can be a friend to Jack and other kids with autism. I told them to go forth and be different themselves, and to show other kids that is okay to be different. I listened to them at the end of my talk when they told me, “There is a kid on my soccer team with autism,” and “I have an uncle who doesn’t talk,” and I knew that some of them were getting it.

Not all of those kids are going to make it. They will not all stand up for the different kids and adults that they run across in their lives. But some of them will. And some of them, even if they don’t act on it now, just might remember about Jack and difference later in life when they come across someone who acts differently. And they might help that square peg find a hole that isn’t round.

At Jack’s conference, his teacher told me the story of a short passage that Jack had to write, which would get a grade of 0 to 3 points. His original sentence earned him a zero. After a long process of reading his passage to the class, being prompted for more, and adding information, Jack finally earned his three.

The teacher has a Hall of Fame wall where passages that are really, really good and earn threes get hung up. Jack’s passage was undoubtedly not up to the standards of what was already posted there. But you know what Jack did? He went and got some tape and he put his paper, on which he’d crossed out “0″ and written “3,” and he put it up there all by himself. He knew that he had worked hard and that, for him, his work was Hall of Fame worthy. And the teacher made a square hole for him and let it stay.

The world is slow to change. We have been hammering square pegs into round holes for so long that it takes a huge leap to put down the hammers. I’m hopeful that I got to some of those kids before they even pick up the hammers. And I hope that some of those kids told their parents. And I hope that some of you hear this and tell your kids. And I hope that we, all of us together, CAN change the world.

*****

Thank you, Kate and Stephanie, for letting me send this message out to more people. Thank you for hearing what I wrote and finding it worthwhile. Thank you for putting me in your show, which was so precious to you. Thank you.

*****
Plus! Links!

Last week I forgot to send you over to the Wheaton Patch for my White Knuckle Parenting column, which I called The Magic Number. In it, I share the exact moment I knew I was done having kids.

This week, I wrote a thank you note to all the mothers out there.

Also, has anyone else noticed how hard it is to type the word “knuckle”? I almost misspell it every single damn week.

Respite

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I know that you’ve probably been imagining me spending the past few days swinging happily in my, I mean Jack’s, I mean Alex’s hammock, but I haven’t been. I’ve been too busy to swing. I mean, I did try to spend a few minutes in there today, but I fell out and then once I’d regained my composure and looked around to see if any neighbors were staring out the window at me, Quinn came running out waving the homework paper that I’d abandoned him with and screeching about my needing to help him alphabetize some words.

Honestly, that is a pretty apt slice of life to apply to the larger picture of how things go for me: run in circles —> attempt to hide from children —> pratfall —> found by child —> homework —> screaming.

Repeat.

Mixed in with the spin cycle of day to day existence have been a couple of things of note. One of them was an IEP meeting today, which was pretty monumental. I think I’ll save that story for tomorrow.

Today, I’ll tell you about yesterday. Yesterday was awesome. Jess from A Diary of a Mom and her family were in town because Jess knows people. Like, White House people. She goes to the White House now and again and tells the folks what’s up. I’m really grateful that she does. She’s smart and thoughtful and has a way of representing a lot of diverse voices and ideas while still staying true to her message—which is helping people with autism.

If I were to go to the White House to talk to anyone about autism, it would be like this: security gaffe —> awkward silence —> me trying to sound intelligent but actually sounding like what would happen if Beavis accidentally wandered into the seat of government —> some nodding and inappropriate giggling —> pratfall/injury during exit —> sobbing in my car.

Anywho. Jess and her family came to town for a quick visit and Sunday of Adventures in Extreme Parenthood came to my house and then we drove into DC to hang out with the Diary gang.

See?

I can’t express how much I love them. So, so much.

Sunday and I were both a little bit surprised that we managed to drive all the way into DC and back together without any major snafus because, come on…it’s us. The worst thing that happened was that I parked about an inch away from the car next to me in the tiny parking garage, so Sunday had to shimmy out of the wrong door. Sorry, Sunday.

I have to throw some props at the Elephant & Castle, the place we had lunch. Jess called and asked if they could help accommodate her family, including her beautiful girl with autism who has trouble with crowds. They put us in a scheduled-to-be-closed private room in the back all by ourselves. Nicely done, E&C. I’ll be back.

Speaking of that beautiful girl, Brooke, and her also beautiful sister, Katie (seriously, Jess and her husband make gorgeous kids), we had quite a lovely time with those little charmers. Katie in particular was very welcoming to our other lunch guest.

Katie may have helped Algernon with his art.

You may also notice the phrase “Stimey the verb” there. Much as I would have liked to have cropped that out of the photo never to think about it again, it didn’t work out for me. See, in that household, when you puke, you have just Stimeyed. Yep. I’m a verb. And not the good kind.

I mean, it’s not that it’s totally unwarranted. I  regularly get emails and messages from people telling me their own regurgitation stories—and those of strangers. It’s kind of a theme here in Stimeyland. And there is one particularly dramatic incident etched in Jess’ mind, so I will take my metamorphosis into a verb and wear it with pride.

Frankly, how many of YOU are verbs?

Yeah. That’s what I thought.

It was such a great afternoon. I even roped Sunday into agreeing to participate in a race that I’m going to run in October. I’ll tell you about that soon too. We think Luau (Mr. Jess) should do it too. Although he might/would kick our asses.

So that’s what I have for you from yesterday. I’ve had a lot of scrambling around trying to get my act together lately, so it was really nice to just chill out with some really nice, funny, relaxing people. I want to hang out with these people more often, that is for sure.

Autism Awareness, Team Stimey Style

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I write at night usually, so by the time I get around to writing about something like autism awareness day, it’s over and everyone reading it is all, “Who is this loser who didn’t get around to it yesterday?”

But! My friend Stacy wrote about it for me, so I’m going to punt straight to her. Please go read this most awesome of awesome posts dedicated to my Jack. Seriously. It’s awesome. 

Also, I was going to write about what Team Stimey did today, because it was an epic outing along the lines of the Team Stimey outings of yore, but now that I am sitting down, I am so damn tired that I just can’t.

To tide you over until I write about it tomorrow, here are my tweets about the carnage outing.

Suffice it to say, we spread our own Team Stimey version of autism awareness today.

Last thing: Thanks to Cool Mom Tech for putting me on their list of Excellent Autism Blogs. I am honored to be included in that group. Thank you.