On The Dialogues and Being an Ally

Some of you may have read The Thinking Person’s Guide to Autism’s Dialogue series. These posts (and the conversations that follow in the comments) are a series of discussions as to the roles of parent advocates and autistic self-advocates in the autism community and in the greater developmental disabilities rights movement.

The series is fascinating and well worth your time to read—although, seriously? Set aside a good chunk of time. And read the comments as well.

I interviewed some people and wrote about it at my Autism Unexpected column. 

While I was reading and thinking for that column, I ended up with pages of notes that I’d written to myself containing my myriad of feelings about the topic. Autism Unexpected isn’t the place for my personal thoughts on this issue, but guess what? I have a BLOG! That is totally the place for my personal thoughts. So here you go.

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When I first started to look at autism blogs online, back  in 2007 when I started to suspect that Jack was autistic, I ended up at a place called Autism Hub that collected blogs from both parents of children with autism and autistic people themselves. The conversations and posts I read there were full of information and wisdom, but also arguments and conflict, with writers struggling to have their voices heard and understood.

Honestly, having that be my first entry into the autism community was scary for me. I was looking at my 3-year-old child and coming to terms with the fact that his life was going to harder for him than I had hoped it would be. But still, I stayed up at night thinking, not of Jack’s new probable diagnosis, but the fracture in the community we were joining and how I should think about autism. Seriously, walking into that conversation without prior knowledge was confusing and uncomfortable.

That said, when I look back, I am extremely grateful that my first exposure to the world of autism came from not just parents, but people with autism themselves. That exposure, that lesson, that knowledge that, hey, it’s okay to be autistic, was crucial to my understanding that my autistic son is just as perfect as any other child. That exposure introduced me to the concept of neurodiversity long before I would have heard of it from parents alone.

See? Perfect. Ish.

That exposure helped me realize that I didn’t need to grieve the fact that my son is autistic, but rather to understand that he is just on a different path than I’d expected. I don’t particularly remember feelings of loss when I became aware that Jack was autistic. For me, it wasn’t about mourning the child he was supposed to be, because he was always supposed to be who he is. It was a tough road to get to true acceptance where I am now, but reading adult autistic experiences made that road shorter than it could have been. And that can only be good for both Jack and I.

This is not to say that reading the experiences of parents wasn’t meaningful to me. It was and it continues to be. Other parents have very much made my path easier and made my journey infinitely better. I don’t look down on parents who grieve loss or feel different than I do. I feel that every person has the right to their own feelings, but I will advocate for what I think is right for my child—and that is teaching him to grow up into a proud autistic adult.

I hope that when he is an adult that people will listen to him and his experiences. And if I expect other people to listen to him, I should put my efforts into getting people to listen to today’s autistic self-advocates.

This conversation has me not only thinking about the greater issue here, but also where I fall on that spectrum between parent advocate and self-advocate. I have wondered for a long time if I fall on the autism spectrum. At the very least, I do not consider myself neurotypical. I could go into all the reasons why and why not, but that is probably not interesting to anyone but me. Let’s just say that reading books or blogs about autism is very much a “yep, me too” kind of experience.

Or, as my friend Jess says, “Cats don’t have dogs.”

Regardless, as a diagnosis or self-diagnosis is not in my future, I do not claim a space on the self-advocate bench.

As a parent advocate, the conversation taking place has been a little uncomfortable for me. It is all so complicated and made up of individual voices and, honestly, my head feels a little fuzzy sometimes when I’m trying to digest it all.

The crux of the conflict here is between autistic advocates, who say that this is their movement, and parent advocates, who have a hard time hearing that. Just as women need to lead their movement and African-Americans need to lead their movement, autistics need to lead their movement.

But then there are some parents who want to lead, who have spent the whole of their children’s lives trying to help them, and living for them and doing everything for their autistic children that they can possibly do—and, quite honestly, feeling dismissed by most of society while they do it.

But these parents are now hearing that what society does to autism parents? Well, we’re kind of doing it to adult autistics. We listen to what they say, but we don’t hear it. We nod when they talk, but then think we know what is better for them. We work so hard for our kids and then when we are told that it’s not really appropriate for us to lead the movement, but rather to be an ally, it hurts.

I feel that most parent advocates want to hear autistic advocate voices, but that it can be hard to let someone else take the microphone when we feel so passionately about helping our children. It can be hard to see that maybe someone else might be better at pushing the disability rights movement forward than us, people without disabilities.

This doesn’t mean that we stop advocating. Absolutely not. But we need to accept that the true stakeholders in the movement are not the parents, but the people with disabilities themselves. (This also doesn’t discount the fact that there are autism parent issues, and we’re definitely the stakeholders there.)

I know that when I get comments here, or other places that I write, from autistic individuals, they carry a tremendous amount of weight with me. The give me hope and understanding. If they feel respected by my voice, hopefully that means that Jack would also feel respected by my voice. I also see that many of these adult autistics are fighting battles so that my son won’t have to when he is their age. How can we ignore these folks? How can we not use our platforms to give them platforms?

As goodfountain commented on one of the Dialogues posts: “It’s interesting that I read language like ‘disabled adults should have a voice’—to me it should be that disabled adults ARE the voice.”

The Dialogues have made me look at my own behavior, what I’ve written about, who I’ve asked for quotes when I interview people, and how I perceive my own role in this advocacy movement. I’m sure I will make all kinds of missteps (because I’m kind of a jerkapotamus) as I try to proceed as a parent advocate/ally, but I promise to try.

One of the best comments I ever got on a post was one that said that I sounded like “a natural born ally.” Do I still want to fight in the autism rights movement? Hell, yes I do. But if I can’t be in the army, I can still be a kick-ass ally.

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If you are interested in this, please do check out my story on Autism Unexpected, but more importantly, read the Dialogues and the many autistic and parent voices speaking there. I think this issue is crucial to our community and will only become more important.

The Awesome

Do you want to hear about the awesome? You do, don’t you? The awesome comes in the form of Jack and LEGO MOTHERFUCKING ROBOTICS!

I have never put any of my kids in an afterschool program, partly because between therapy and sports, my kids are overscheduled enough; partly because after six hours of school my kids are pretty much done; and partly because some of my kids who need a paraeducator to get through the day might not do so well all by themselves in an afterschool class.

But then came Lego Motherfucking Robotics. (I think the people who offer the class leave out its middle name, but I like to use the full version.)

Planets aligned to make this class fall into our schedule perfectly and Jack wanted to do it, so I crossed my fingers, marked an X in the box on the registration form after “special needs,” and sent in a check. I figured that if there were ever an afterschool class for Jack to be successful in, it would be this one, because…Legos…and robots.

Sam practices soccer once a week with the son of the woman who coordinates the afterschool programs for the PTA. (Did you follow that?) One day at practice, we spent a long time discussing the class, what happens during it, how to deal with any problems if they arise, how Jack is likely to react to the class and working with a partner, and by the way, Jean, just calm the hell down.

Yesterday was the day. Jack made it to the classroom just fine and because one kid didn’t show up, the woman from the paragraph above suggested that he be able to work alone this week. I ran into her in the hall when I was picking up Quinn and she said to me, “He is in his glory. In his glory.”

I’m sorry, I need a minute. *fans eyes*

At pick up time, I found Jack with his Lego creation hooked up to his computer. He didn’t even notice that I arrived.

They are dancing birds. They spun around.

Shortly after I took this photo, one of the class leaders—of which there were THREE—told the kids to clean up. Jack completely ignored her. I started trying to coax him into listening, when they told me to let them handle it. I walked away and two minutes later, Jack had happily complied with her instructions.

I mean, probably if anyone has experience dealing with kids like Jack, it is someone who teaches a Lego (Motherfucking) Robotics class, but I was impressed. And happy. And Jack was happy. And all was right with the world.

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Also, just so you know, today a squirrel ran right in front of my car wheels. I thought he was a goner. I braked, but managed to NOT crash my car. Also, the squirrel survived. It was, I feel, a perfectly appropriate response to an ordinary situation.

If It’s Team Stimey, It’s Team Spew

Oh my dear lord, I am tired of dealing with puke. It is at the point that I can no longer come up with funny synonyms for barfing. Horking is the last one that made me laugh and that one is all the way from early summer.

I am DONE with all the vomiting. Someone please alert my children.

Do you want to know? I mean, really? Do you want to hear more about Team Stimey and the regurgitation with which we are so familiar? Aren’t you tired of it too?

Really. Someone please alert Quinn.

Last Tuesday, Quinn threw up at lunch and was sent home from school. He was fine. Last Wednesday, Quinn threw up at lunch again. The school nurse thankfully realized that Mr. Weaky McStomachson was okay and sent him back to class. Again, he was fine.

(Although, by all reports, he was terribly perturbed.)

Today Quinn threw up at lunch again and was sent home with the strict instructions that if he is fine that I should bring him back to school in an hour or so.

“Just finishing up the part of lunch that I didn’t barf up, Mom!”

Guess who went back to school at 1:30?

(And he wasn’t even all that perturbed.)

During his brief time at home, I told Quinn he was going back to school in a little while and he said he didn’t want to and when I asked why, he said so very sadly “Because I just got here!”

And that is why he went back to school—because I don’t want his weak stomach/high gag reflex/stuffy nose leads to retching/inability to properly chew to turn into If-I-Puke-I-Get-To-Go-Home-Syndrome.

I feel perfectly fine with sending him back so shortly after upchucking because that kid has no fever and no flu, but I have my fingers crossed that he manages to go the rest of the week without losing his lunch again or I’m going to have start avoiding his teacher’s eyes.

What Happened to Alex on the Way to Work

Alex called me at about 11 a.m. this morning to tell me how his commute went. Evidently it did not go well.

He started by saying, “I came around a corner and there was some sort of creature in the road…”

My mind’s eye immediately conjured up this:

Creature = Yeti, right?

 

“So I swerved,” Alex continued…

Meanwhile, my mind’s eye was busy rejecting the Yeti as too unrealistic. But what kind of creature could cause Alex to swerve out of control?

This was supposed to be a bear. But I can’t draw a bear.

 

I interrupted Alex to ask him if he was okay. It seemed like the considerate thing to ask at this point in the conversation. Dude’s fine.

My mind’s eye:

 

I know. Über-realistic this time.

 

Of course, by this point, I was deadly curious to know what giant and exotic animal had NEARLY DESTROYED ALEX.

My mind’s eye: A deer. I really did imagine a deer. It seemed likely.

I was wrong. The “creature” that caused Alex to swerve?

But we have a deal with the squirrels!

 

I know. I lost a little respect for Alex too. I love squirrels as much as the next guy, probably more (probably A LOT more), but you don’t swerve for them. Duh.

Anywho, then Alex said that the car seems to be fine, except he blew out a tire on the curb or something. And he lost a little bit of dignity.

That’s one jerky little squirrel.

 

Here’s the thing about Alex and the reason he called though. I don’t think it was for my special brand of patented Stimey support. (Although I can’t imagine why not.) It was for this:

Guess where I’m spending my day tomorrow?

 

Motherfucking squirrels.

Things on My Mind, Nos. 1-8

I have all these scattered things kind of jumping around my brain and I keep starting to write posts that end up being really long and don’t really go anywhere and then I end up not publishing them and then I look up and a week has gone by and I’ve only posted once, but I know that I have all of these thoughts rolling around in my head, but I haven’t told any of you about them and, really, how am I supposed to live an unexamined life? I can’t at this point. So here:

1. Jack is OBSESSED (really, that should be in a bigger font) with Plants vs. Zombies these days. He can recite the information about any plant or zombie in the game. His skull is kinda small; I have NO IDEA where all that information lives. That said, I have seen him use that game on his iPad to interact with other kids more than once in the past week. It’s really cool. I wrote a kind of hastily written and poorly constructed post about this for Hopeful Parents (it was 10:30 p.m. on my posting day when I wrote it). You are welcome to read it if you’d like.

2. If you’ve sent me an email in the past two to three weeks, I promise I’ve read it and I will respond soon. I swear. I’ve kinda dropped the ball on email of late.

3. That said, I think I may have to start replying to your blog comments in the actual comments section instead of via email. Remember my whole angst-filled “what do I do about blog comments to be least annoying to you?” posts from a few months ago? Well, that system has resulted in my either not replying to your fabulous comments, which I LOVE, or doing so two weeks after you have forgotten that I have ever written a post. So! If my response to you is really important, either subscribe to replies on your comment (which will only send you emails if someone specifically replies to YOUR comment), or check back to the comment section later. Also, I think if you create an Intense Debate (my commenting system) account (free! easy!), you won’t get confirmation emails about subscribing to a comment.

Most of you could have just skipped that paragraph. If it confused you, it probably doesn’t matter. I just don’t want any of you to think that I’m ignoring you, because I honestly like you all so much and really appreciate when you take the time to comment. I’ll shut up now.

4. Jack and Quinn’s school had their back to school picnic last Friday. Those things stress me out so much. I spent most of that evening on edge about my kids’ potential behavior and paranoid that one of them was going to wander off. (I think you know which one.) It turns out that they were (mostly) angels. We had one or two blips, and Jack did depart suddenly at one point, but it makes me wonder if *I* am putting the anxiety on me. That said, I kind of feel like if I let my guard down, we will have Team Stimeyageddon. Maybe it’s not that parents with kids like mine are always dealing with the meltdown or unexpected behavior, but we always have to be ON GUARD for it. It is exhausting.

Then again, my kids often behave differently than the normies expect they should act. I have to do some more thinking about this.

5. Moonbounces: My kids love them. Moonbounces: Jack does not care to leave them when he is supposed to. Moonbounces: If you are going to let kids stand in line for 15 minutes for them, don’t deflate them just as said children get to the front of the line. Moonbounces: I has the mixed feelings about them.

6. My kids’ two elementary schools have the exact same 20-minute drop-off window in the morning. The schools are 23 minutes apart. Riddle me that, Batman. I’m waiting to see which school yells at me first: Sam’s because I drop him off early every day or Jack and Quinn’s because I drop them off late.

7. Phew. I feel more unburdened already. Now I have to go figure out how to get Sam’s birthday party invitations to a bunch of kids whom I don’t know and whom he has identified by first name only.

8. Enjoy the rest of your weekend!

Hockey Season Is Upon Us!

(Although, really, because the season is from September through May, when is hockey season NOT upon us?)

Nonetheless, Jack and I headed back to the ice rink last Saturday for his first skate since last May, at which time he had been claiming that he never wanted to play hockey again and if he so much as saw a hockey puck he would set fire to this whole damn house, so help me God!

Or he said that he didn’t want to play hockey anymore.

I was so happy in the days leading up to last weekend to hear Jack counting down the days to practice and asking if he could skate when we stopped by the rink to sharpen his skates. I was thrilled to hear him say yes and give me a giant thumbs up when I asked him if he was excited to play hockey again.

Friday night, he was all keyed up because he was excited. Seriously, people, this is kind of unprecedented. He rarely gets visibly excited for something in advance.

He even had an opinion on what hockey socks to wear.
Seriously. Unprecedented.

I took a photo of him actually looking at the camera while he was in the locker room, but he looks CRAZY in it, so I decided not to publish it. Then I took a gajillion photos that to you look exactly like the one above, but to me show how adorably excited he was.

He’s in front—and grinning.

To be perfectly honest, once everyone is out on the ice, I have a hard time telling which one is Jack. I need to invest in a bright red helmet or something to keep me from talking about someone else’s kid like he is my own.

About 45 minutes into the practice, Jack decided he was done following directions. Look at his little sad brown eyes as he asks if he can just skate in circles. What would you say?

I said that he had to skate in squares.

Jack spent the last few minutes skating in circles around the center blue line, which is what he does when he gets tired. It’s a little disruptive for others who are trying to practice drills in the vicinity, but just like the honey badger, Jack don’t give a shit.

Coming through!

On the one hand, he’s getting a lot of good practice at skating and weaving in and out between people. On the other hand, I should probably do some work on teaching him how not to be a jackass. Although I’m pretty sure that Jack’s social skills group covers “Jackass: How Not to Be” in the third week.

We have a bunch of little rituals that happen after practice. Of course there is the Famous Amos ritual, wherein as soon as Jack gets his gloves off his hands, I am holding out a bag of mini chocolate chip cookies.

Then there is the I-demand-that-Jack-carry-part-of-his-gear-only-to-have-him-slowly-give-it-back-to-me-piece-by-piece ritual, which dovetails nicely with the I-need-a-rolling-hockey-bag muttering to myself.

Then I give Jack a coin to put in the spiral coin thingy. This is called our coin ritual.

I don’t know what the coin thingy is called.

I don’t know why, but I feel like if I just put one of these in my front yard that I would make a thousand dollars every day. I have never met a person who doesn’t like to put money in these. I don’t even know who gets the money we pour into that stupid spiral thing every week, but they’re making good money off of me what with my inability to always find a penny in the bottom of my bag, requiring me to give Jack bigger money. Sometimes even a quarter.

Then we do the Jack-gets-to-play-iPad-until-we-get-home ritual. This is a new one. Last season he used to have to play on the iPhone. I shudder to think of it. We were barbarians back then.

I like that he is using the water bottle as a footrest.

Hockey went so spectacularly well last weekend that I almost want to wave my hands in the air, yell “Thank you and goodnight!” and leave on a high note. But I’m too madly in love with the team to do that. So we will stock up on cookies and pennies, charge the iPad, and head out again at the crack of dawn next Saturday in hopes that hockey is still as much fun as it was this week.

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Jack may skate in circles, but I’m running in place. Check out my post “I Choose to Run” at The DC Moms!

Extraordinary

Anna See and I have read and commented on each other’s blogs since waaaaay back and I was able to finally meet her at BlogHer in New York City a little more than a year ago. I love her. She is delicate and beautiful and funny and creative, and every time I see white furniture, I think of her.

I went to the memorial service for her son, Jack, on Monday.

Anna spoke at her son’s service, and her words were extraordinary. You should read them on her blog where she posted them today. Then you should read a post by a friend of hers who was at the service, because what she writes is exactly what I saw in that church.

I am not a religious person. I do not have that faith. But Monday, in that church, for the first time, I felt a glint of understanding. I felt what faith could mean to people. It was remarkable.

Regardless of faith, the pain that Anna and her family are experiencing must be crushing. It has to be extraordinary in the worst possible way. I feel helpless in the face of such pain.

I am but one tiny part of a piece of Anna’s life, and I can’t take her heartache away. I can, however, let her know that I am here and I am not going anywhere. If enough of us tiny pieces work together to support her, love her, help hold her up, maybe we can be of some comfort.

I think every day about Anna and her husband and her daughter and their Jack. I hold them in my heart. I wish there were more I could do. I never met Jack, but I will not forget him.

I can’t say it enough: Anna, I love you. You are extraordinary. I am sending you my love.