Mamazen

Autism wins.

Somedays, Autism wins. Yes, that's Autism with a Capital A, as opposed to autism, the one that doesn't reduce you to a sniveling mess in the car outside your kids school.

Today was Run for the Arts at Ruby's school. Through the generosity of family and friends, she had about $400 worth of pledges on her sheet. I doubted she'd run more than 2-3 laps but you never know, the girl does love to run. I was excited for her first school fundraiser, and as a runner, excited to watch her run. Also, the arts programs can use all the help they can get, so knowing we had a lovely amount to donate to her school filled me with joy. So, I decided to volunteer the day of the run and help her class out.

I showed up in the classroom at the appointed time, and all the kids were still out at recess. I chatted with Ms. F about how things were going, shared some cute anectdotes and waited for the class to return. The second they came in, all the kids surrounded me asking who i was, and telling me about their day with Ruby. And then she walked in, and it all fell apart.

She saw me and thought it was time to go home. Nothing could dissuade her. I told her I was there to help, and that we were going to PE to run, and the tears started. We walked together to circle time where she buried her head in her lap and cried hysterically. When the kids went to line up she just completely freaked out. I tried hugging her, reassuring her, holding her hand, and every trick I had in my tool box. When the kids filed out, she ran to the table and just kept crying. Part of me knew it was over at this point, but part of me thought that maybe she might calm down and pull it together and be able to participate. 

She yelled at me to leave, saying "GOOD BYE! GOOD BYE! GO GO GO!" so I stepped out into the hallway to see if Ms. F could bring her sensory system down, the classroom after all is her territory, and Ru is used to her being there, not me. I stood outside the door, hearing her weep and hearing sweet Ms. F offer so many comforting things that usually help calm Ru down.  There was another little girl having a terriffic meltdown and it took two adults to keep her safe and I'm sure her outbursts were not helping Ruby's spiralling sensory system.

Finally Ms. F stepped out, and said Ruby was just crying on a bean bag, and she had to go check on the rest of the class in PE. I said I was going in to be with her, and Ms. F said "I think if you go in she's just going to want to go home" to which I replied "Yeah I think that's the only option, I don't think she can pull it  together, and I can't take much more" ((and I burst into tears)). I reassured Ms. F that I'm just an overly emotional pregnant lady and went in to Ruby.

I sat next to her on the floor, offering a hug, or a hand to hold or anything, and she just kept refusing me. Finally, after a couple of minutes she sat up, crawled into my lap and asked for a hug. I was doing my best NOT to cry, as I held her close, realizing my huge mistake in this debacle. I asked if she wanted to try to go to PE, and she said yes, but clearly she was so overwhelmed and confused that she didn't mean it because she immediately grabbed her jacket and backpack and wanted to go home. Ms. F came back, and we were going to try and walk to the track to watch the other kids, but the tears started again, and Ru practically climbed up my leg she was so anxious, shouting "Goodbye!" to her teacher. We bid her farewell and  headed out to the car, the sobs getting further and further apart.

Once we were outside, it was like it had never happened. She walked to the car, talking about the trees and the kids she saw at school that day, and asking for a snack. We buckled in, and headed out to the other stops we had that afternoon, groceries, milk, speech therapy, and other than not letting me out of her sight, she was totally normal.

I on the other hand, called Ryan (who is away in Texas on business) and cried like a baby. There is NOTHING harder than seeing your kid in a place that you can't reach, a place you put them in because you didn't think that maybe, just maybe the separation of home and school isn't something she's ready to shift yet. Nothing harder than watching her anxiety escalate to a point where she can't have rational thoughts.

Nothing worse  than knowing the only thing you can do is let Autism win, and try again tomorrow.

Fortunately, Ms. F is going to have Ruby run tomorrow at PE so she can still get credit for participating. Autism won today but it won't keep us down for long.

69 months

My dear sweet Ruby, 

It's been a while since I wrote you a letter, 6 months to be exact. But, we've been busy, and well, I forgot. So much has happened, SO MUCH. Frankly, as per usual, you've blown our minds with what you've done and how you've grown. Kindergarden has proven to be so much fun for you, you've made friends, you're working hard on communicating and interacting with them. You've been hugely successful with potty at school, tho we're still working on getting poops in the toilet, and we're all doing our best to be patient with you as you learn how to do this and communicate your needs to us. 

At school you're progressing well on all of your goals, not blowing through them, but slowly working on each one. I'm not sure you'll reach all of them, but you're trying, and we're so proud of you. Your language is progressing with leaps and bounds, your conversational skills surprise me every day. You'd think that I would be used to these surprises by now, but I never am, they always blow me away. 

You've been having sleep troubles off and on again but the awesome thing is that you're sleeping in your own room! We moved your bed into your Lorax room shortly before Christmas, and surprisingly it was an pretty easy transition... well the going to bed part was. Every night you're happy as can be to run into your room after your shower and hop into bed and to let one of us read books to you and snuggle you till  you fall asleep. However you've only had a night or two that you slept all night alone in there, and after a month and half of your daddy and I taking turns sleeping in your twin bed we finally decided to just put a twin mattress on the floor of your room so we'd have a comfortable place to sleep. I figure all of your sleep transitions have been difficult and have taken a long time so this one probably will be too but we might as well get as much rest as possible during it. 

Your daddy is doing all the nght duty because I realized I just needed more sleep... because you're going to be a big sister! It's still very abstract for you, but I think you're starting to get it. Every night when I do bedtime you like to rest your head on my belly and say "good night! sweet dreams baby!" We listen to the heartbeat with a doppler and you will sometimes get a HUGE smile on your face when we hear that sweet galloping sound that is your little brother or sister. I can't wait till you can feel the kicks and rolls as he or she grows bigger in my belly, and I really can't wait to see how you grow and mature when he or she arrives. 

My dear, amazing Ruby, I can't believe you're closer to six than you are to five. Every day you amaze me, and every day I'm grateful to be your mother. Every day you shake me to my core, empty me out and fill me up again. Every day, you show me thing I didn't know existed in the world around me, and in the world within me. 

I love you, I love you, I love you. 

xoxo Mama

Yeah it bothered me too but...

Lately there has been a (poorly written with some wretched grammar, but with some good points) article about running circulating. I'm not going to link to it, because I don't believe it needs or deserves any more traffic. It's not because it was poorly written, or because it has bad grammar, but because in the very first paragraph, before I can even bring myself to like the guy, he pulls the R word. Makes a joke about being retarded and acutally says 'to put it politely'.

 

POLITELY? it's Polite to ridicule and offend people who can't defend themselves? It's more POLITE to call your inability/non desire to take care of your body through exercise retarded than to say... um LAZY? 

POLITE?

FUCKING BULLSHIT. You know, you're a relatively intelligent human being with access to MANY words in the human language and this is all you can come up with?  Seriously? I mean I know in your title you admit you're an idiot, but REALLY?

But the article isn't the only reason I'm blogging about this. If this were written by someone I knew they would have probably gotten a email filled with education about the word choices they used, and depending on their response, might not really be my friend anymore. The reason I'm writing about this is because of the number of people I know, and love, and respect who are sharing links to this article.

When you click *like* or you share these things, you condone the language.  When you post this article and then say 'yeah it bothered me to' but still share it... do you not care? Do you not care that now more people are clicking and reading and assuming that it's ok to make retard jokes because the rest of the article is funny? I had one person respond to me that the article was 'borderline offensive'... This isn't borderline offensive, trust me, I've got a kid in special ed, this guy crossed the border a long time ago. It's rude, it's wrong and it's time to grow the fuck up and change our language.

The thing is, I could have written this article myself, down to the huffing and puffing when I started running, to the revelation that running clothes are super rad, to the fact that when you actually start doing it, it's FUN... but I could have done it with out hurting my kid, and many other kids who do ride the special ed bus, and do attend a special class and just possibly might end up getting a check for disability for the rest of her life.

So please, think twice when you recommend something that carries this word with it. It's not just that it's offensive, it's that you're allowing this word to be whitewashed into daily life, swept under the rug because 'the rest of it was good' and people remain desensitized to the discrimination.

Do it for me. Do it for Ruby.

Progress

So close. So close to the end I can taste it. I'd like to go out with a bang, telling you some outrageous story about me, Tony Soprano and a pipe wrench but... I really shouldn't.

Instead I'll tell you that at 4 am I was woken up by being pummeled with a multitude of elbows and knees that completely scared the bejesus out of me. I yelped and startled the poor kid (who was clearly having a bad dream) back into her own bed where she cried out "I'm saweeee I'm saweeee!!!" to which I tried to reassure her that there was absolutely nothing to be sorry about, I was just startled.

She then popped her head up and shouted: I HAVE TO GO POTTY!

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and so we ran to the bathroom, pulled off her night time diaper (that usually wakes up dry) and popped her up on the toilet in the darkness.

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and then she peed. For the first time ever, my kid woke up to pee in the night. The heavens parted, and a choir of angels sang a holy tune of tinkle tinkle little pee. Progress people, it's all about progress.

Muppet madness

 

Yesterday I took Ruby to see the new Muppet Movie with most of my family.  A few of the dudes stayed behind to watch foozball, but really they missed the best show. 

I was skeptical that Ru would make it though the movie at all, since she'd pretty much been a melting, screaming mess most of the morning. She'd had such  a great day on Thanksgiving that it was no surprise she had a hard time keeping her shit together on Friday. Lots of melt downs, lots of crying, lots of throwing stuff. I kept asking her if she wanted to go see a movie and she'd say "no, no movie!" so I finally showed her the trailer to the Muppet movie and her interest peaked. It wasn't until I told her we could get popcorn that she willingly changed her clothes, grabbed her backpack and headed for the car. 

She hadn't peed in a while, so I kept asking her if she needed to go potty, which of course she didn't once we were in the theater. We had 30 minutes of previews (some of which were way too intense for my kid) and I was sure that we'd never make it through the whole movie without a melt down and/or wet pants. 

Finally the movie started and Ruby was riveted. She sat on the edge of the seat or cuddled up in my lap and couldn't take her eyes off the screen.  She enjoyed each song, bopping her head and singing along even though she didn't know the words most of the time. When it finally came time for the Chickens to perform Forget you by Cee Lo Green she was 100% in Ruby Show mode. She had every person around us laughing and watching her, not the screen. 

I could not have loved her more in that moment. My girl has the Muppet Madness and I plan on doing everything I can to feed it. 

Friday

Fridays kinda suck. No, I'm not crazy. Ryan gets up with ruby and gets her on the bus and let's me grab a few extra zzzs. Then I work pretty much nonstop from 9-6. Then I drag my ass upstairs for 30 mins of time with a tired and irritable kid then we cajole her into bedtime.
30 minutes isn't much time with your favorite human.
Oh, but bedtime can be the redeeming moment. She snuggles against my chest while we read a few books then she asks to turn out the light. Then she curls up on my lap and strokes my cheek and quietly says "blackbird?"
You'd think after singing it for 5.5 years I'd be over it, but every time I get a lump in my throat and tears in my eyes when she asks for it.

You were only waiting for this moment to arise. I could not love this child more.

Case in point:

Observe: back pack

And the magnifying glass.

I love this kid.

 

My kid is weird

I know, this isn't a shock, right? She's my kid, and I'm weird. But sometimes she's such a goof ball I just don't know what to make of it. Ever since she got her backpack for school, she takes it everywhere. It's adorable. Grocery store? Back pack on. Speech therapy? Back pack on. Target? Back pack. ON. She also feels the need to grab random objects and either carry them around, or put them in her back pack.

Yesterday, on a little shopping trip to Fred Meyer she took: Back pack, binoculars, noise canceling headphones, water bottle, coloring book, 3 pens.  She did not need or use any of these items at Fred Meyer. See? weird.

Today, to speech therapy she took the following items: Back pack, jacket (it was warm), water bottle, snack bag (ok I packed it cause she didn't eat much lunch), 3 coloring books, 4 pages of stickers, 3 pens, magnifying glass. When we arrived at speech therapy, she brought all items in and used the stickers. Afterward we went to a playground and my kid brought the stickers and pens up on top of the play ground equipment and proceeded to sicker and color at the top of the slide. I'd hoped that we'd run around and burn off some energy, but laying in the sun on a crisp fall day was still pretty rad.

So, in conclusion, my kid is weird, and I love it.

The dreaded R word

In the past week, I've been unucky enough to be around no less than 5 people who have unfortunatley chosen to use the R word around me. What's the R word? Come on now, it's the last acceptable slur in our vernacular, the thing all teenagers call each other without questioning why it's wrong, it's the thing people call themselves when they do something stupid or ugly. It's disgusting and wrong. Retarded, tard, retard, or any variation with 'tard' at the end, it's all the same.

I debated heavily even writing this post, because every single person who said it in front of me, immediately looked stricken, and apologized and clearly realized their faux pas. In every instance, I looked at my friend, acquaintance or colleague and said "please don't use that word, it's not ok". I accepted the apologies and moved on. I figured if I tell people it's not ok, eventually it'll will sink in that it's not just NOT OK around me, but it's NOT OK ever.

Last night I was out with girlfriends, sharing many bottles wine, when one of my friends said it. I don't even know what was happening I just heard it and stopped. I said "Don't say that word. ever. It's not ok." And my friend, who is kind and compassionate and loves me and my kid and every human on this planet crumbled. It was as if she hadn't realized what she was saying and she was horrified. She immediately beat herself up and burst into tears, repeating how she is always the person who gets mad a other people who say it.

And that right there is why I needed to write this post. Because it's so ingrained in our history as an ok thing to say that when our defenses our down, when the wine has kicked in, it just comes out.  I'll say right here and now, I love dearly each of my friends that has said this word recently. I don't hold it against them that this slipped out, especially because each of them realized it immediately and made amends. I don't hold it against them because they are human, and so am I and trust me sometimes I'm a complete asshole.  To err is human, right?

But no matter how awesome you are, when you let this slip out, you are hurting people that may not be able to defend themselves. When you let this word enter your vernacular, you hurt people like my kid. My kid, who attends a special ed classroom, and who can't carry on a conversation, or get dressed without help. My kid, who may never be able to live alone, hold down a job or drive a car. My kid who may just end up being smarter than each and every one of us, and who may just hold the key to changing the world. But when you use the R word, you don't give her that chance, that opportunity, you strip her of her brilliance, and beauty.

So please. Try harder.

 

NaNoBloMo and Autistics Speaking Day

Ah, November. The month that always makes me renew my passion in writing because I force, coerce, volunteer myself to the age old (ok not really) tradition of NaNoBloMo, the slightly less prestigious writing challenge to NaNoWriMo (and we all know I'm not a novel writer). Bascially I'm committing to writing every day for a month. Yeah I said writing, not blogging, so some of what I write may stay personal, don't get offended.

Today is Autistics Speaking Day. Go ahead, click and read a little about what other people have to say. It's not a day for me to talk about how her autism affects me, or the family, but it's a day for her to talk about who she is and what SHE thinks about her autism.

Well, she's five, isn't completely verbal and can't write just yet. I can't speak for her, but I can tell you a little about who she seems to be, and what I hope this day is for her in the future.

Ruby is LOVE. She was a product of years of trying to concieve and from the moment we knew she was a possibility she filled everyone around her with hope and love. Ruby can hug you with so much love-force that you feel your heart may burst from the intensity. She'll say "mmmmmm kisses!" and plant one on you before you can get your lips pursed. When Ruby loves you, you never question it.

Ruby is FUNNY. Even on her toughest days, Ruby can draw a smile from the hardest hearts and can turn any moment into a fit of silliness.  Ruby loves to laugh, to make you laugh and then to laugh some more. Nothing cures a rough afternoon like a fit of giggles.

Ruby SEES. I have yet to meet a kid with autism that isn't always absorbing things around them like a sponge, and Ruby is no different. She may take a little longer than others to show you what she's learning, but every day, all day she is seeing things that you and I don't see. Just today while we were sitting in the drive way pretending to drive the car, she looked up at the sky and said "oh look, there's the moon there!" and sure enough there was a lovely sliver of moon peeking out from behind a tree. Ruby sees spiders working their (creepy) magic in bushes, and birds high in the trees, she hears crickets and hellicopters that I would normally tune right out.

Ruby SINGS. Ruby loves music, and once she hears and loves something, she will sing along like there is no tomorrow. If she could carry a tune a little better, she could be a broadway star, because this girl can belt it out. She currently loves the soundtrack from Wicked and oh how I wish it were on DVD because she would love to watch the story. I don't think she could sit through a theater production, but if she could I'd take her in a heartbeat.

We're raising Ruby to be proud of who she is, every facet of who she is, including the fact that she has autism. Autism doesn't define who she is, but it's an integral part of how her brain and body function and how she relates to the world around her. We're doing everything we can to help her body and brain be as healthy as possible, including therapies to help her navigate the world around her. We also believe in helping the world around her learn to understand her and other people with autism. It's not about getting her to fit into the world, but creating a world where she can fit in easily being just who she is.

We're raising her to advocate for herself, but with the hope that over time, she won't need to.  I'm not just interested in autism awareness, but the concept that we all need to learn to accept and embrace the differences in those around us.

So, go, read a little about what people with autism think about themselves, the world around them and open your mind to the unknown. You may just meet some pretty interesting people there.