Sunday, November 29, 2009

Nothing but the Truth

My favorite joke these days is an old joke, a dark joke, a joke many of you will not find a bit funny.
But it's a free country, and we're all entitled to our own sense of humor. Since I've worked hard on being thankful and positive for the last few weeks, I think I need a little outlet after five days home, if you know what I mean.

So what is my favorite "joke" lately?

I mean that literally. It goes like this, with numerous variations on the theme... I take my kids somewhere, usually a place that is entirely for them and costs me a small fortune, and they fight, spit, scream, whine, cry and scream. On the way home I say, "Know what I really enjoyed about that experience?"

Wait for it...

Yes, it's childish and petty and unnecessary, but C'MON. Seriously. Must I implode?

Today, for example, we drove an hour to try to have a family meal at a restaurant that was our last best chance at being Rooster (and Peaches) friendly. This place is ON THE BEACH. It has the word PARADISE in its name. You sit with your feet in the SAND. They have a gfcf fruit salad to kill for, chicken fingers that Peaches loves and rarely gets to have, and they bring you crayons and coloring pages. This should be Nirvana for both of my kids. But all the way there Rooster was upset because he wanted to be watching TV. Peaches was in a frenzy of "mine." We got a table facing the freaking Pacific Ocean, the breeze blowing, pretty girls sunning themselves, no overstimulating noises, no crowds, no dramas anywhere but at our table. We had fast service, the works.

But know what I enjoyed about my meal?
You certainly do...
NOTHING. I might have hit gratitude overload. I am so sorry about that. I know I should be grateful for the little bit of salad my children's fighting and SPITTING (GROSS) and fork throwing permitted me to shovel in, and I really and truly am glad I have food to eat and money to pay for my food, but I wanted to scream as badly as I've wanted to scream in a long time.

So I come here. I scream into blogland. I scream out my dark humor, and it makes room for me to find my sanity again.

I enjoyed Thanksgiving. Best one we had in years. I am grateful for the reminder to be grateful, too. I am wholly aware life could be a lot worse, in myriad ways. One glance at the news is all it takes to remind me should I begin for forget even for a second. I think often of how much real suffering there is in the world, and I count my blessings, too.

But you know what I'm liking about autism these days? What I'm liking about what autism means for our family life?

Whewww. Thanks for letting me get that off my chest.

Friday, November 27, 2009


Have you heard about Anissa Mayhew?
I had never heard of this mommy blogger before, but she's been on my mind all weekend. I'm going to think about how I can help her family, because I know that's the best way to help her.

Tuesday, November 24, 2009

Bloggy Thanksgiving

Oooooh, please, please, please, if I accidentally fail to mention you here, KNOW that I grateful for you. I read your blog. I value your comments. I feel your support. I just NEVER EVER SLEEP so I mess up sometimes due to the cognitive toll of CONSTANT wakefulness. But I appreciate you! Just for being here. And some of the people I appreciate I realize don’t even even have ANY IDEA who I am…and I’m totally cool with that...

This Thanskgiving I feel the need to say how thankful I am for the blogosphere. I need to say that I am grateful for so much, but on the long list are:

Christine reconnects me to the place in geography where I was the happiest. Not only does she live in one of my former hometowns, her blog feels like a home, too. She has the kind of life, of demeanor, that I had envisioned for my own self when I was growing up. I didn’t turn out nearly as patient, reasonable, or domestic as I expected, but maybe there is hope for me yet, as I learn from Christine, or maybe she can at least help me learn to forgive myself for my shortcomings. In some ways, Christine is like my invisible friend. I mean, she is a very real, very bloggy friend, with whom I can email or Facebook. But sometimes it is Christine I talk to in my mind as I drive home from a long day, or whose advice I seek in my mind when I’m trying not to choke my children. I have never heard her voice, but imagined it many times, reading her blog posts over and over. She has written words that felt like gifts to me. Her blog is very lovely, and though our contact is largely indirect, I am thankful for Christine.

Beth inspires me to what bravery I can muster, because she exemplifies bravery, especially in dealing with things medical. One of the bravest things I’ve admired about Beth is her ability to listen to her own intuition. She learns all she can from doctors, her amazing husband, reading, and her gut, and sometimes her gut has the wisest information of all. That is why her boy has beaten so many odds and defied obstacles to thrive so beautifully in her care. Her blog shows so much wisdom and balance, and I read every single word of every post with gratitude. Plus, Beth handles sleeplessness so much better than I do, and keeps her sense of humor about it, making her a hero for whom I am very grateful.

Mama Mara blows my mind. She flaunts brazen humor about some of the dark things many of us shy away from, and she does it with fierce creativity. Mama Mara shows me that we can all do things that we don’t think we can, and she helps me remember that no matter how big a turd life throws in your face, there is a good book that will help you figure out how to flush it down. Plus, her potty mouth makes me look virtuous by comparison, and I like that. Rarely do I (a sailor-talker in the f2f world) look virtuous. I admire MM because she refuses to let a bad man equal a bad life, and that gets a big A-Men from me, and because she fiercely loves her sons just like I love mine. I appreciate her candor.

Vicki took what life handed her and refused to break no matter what. She writes it like she lives it – honestly, openly, with passion and poetry. Vicki lives a lovely life. She helps me realize I do too. I appreciate Vicki’s effort, her example, her wisdom.

Drama Mama cheers for us all. She reminds many of us that we stand where once she stood, and we will make it to the other side like she did if we just. Keep. Trying. Plus, Drama Mama speaks to my inner Fancy Nancy. Mostly I’m a tomboy type who slouches around with my fists tucked in my jean pockets, but sometimes I read Drama and realize it’s time to get my eyebrows waxed and live a little. I appreciate her flair! Her style! And I just flippin’ worship her kids.

Redheaded Mama is an artist. I mean, yeah, there’s her design work, but she’s an artist through and through. And she’s generous. If she has a resource, then so do you. She practically wrote us a minute-by-minute guide to Disneyland for spectrum kids. And then when she and her daughter came to Disney, guess who else they visited? ME! Getting to meet her in person was so satisfying, so real, so blog-comes-to-life. I appreciate Red’s beauty.

MOM-NOS is kind of an idol, isn’t she? She’s like the beloved celebrity that every fan thinks they have a personal connection to unlike anyone else’s. I know I am not the only one to say this, but MOM-NOS’s blog was one of the first I read, and the one I clung to, the one that made me sure, the one that made me sad, the one that gave me hope, the one that made me feel I finally found someone who understand. She welcomed me to the fold. She works at a college, and for some reason that always gives me this feeling that MOM-NOS is my RA, because she has so much sage knowledge from having already learned lessons I’m still learning. And? Wow can she write. Sometimes spare, sometimes lyrical, always on message, always exemplary. I am so thankful for MOM-NOS’s wisdom and generosity.

Jess is the powerhouse. I used to have Jess’ energy. I think I was twenty at the time. Jess is a hard working career woman who is equally as hard working at being a mom, and yet as hard as she works, as driven as she is, she is also always ready to emote. I deeply appreciate the sincere emotions she shares, the way she owns her vulnerability. I am always grateful for how prolific Jess is, that she is so often just there, writing, facing what needs to be done, admitting how hard it is, and embracing all of us going through similar trials.

P is a blog reader of mine because she loves me since way back when, and knows I love her too. P accepts the crazy family I’m raising now with the same kindness, affection, and simplicity with which she accepted the crazy family that raised me. P supports without judgment, and loves without condition, from thousand of miles away, and I appreciate P for being my steadfast, solid, sister-like friend, and for making me a quilt that makes me happy and gives me comfort every single time I look at it.

PixieMama lives 100 miles an hour much the same way that I do. Pixie and I, we have lots in common for women 3,000 miles apart of different ages and different religions and with very different lives. We can talk, and we do. Pixie Mama came to visit, and proved we can have visitors in our house. Pixie teaches me not to apologize so much. I am grateful to Pixie for liking me, and my family, in spite our ways. I am also grateful that she gave me my mantra, “Be OK” and my nickname, SkyBluPink.

JoeyMom never says she is tired. She makes me want to say it less, even! I find this very admirable. She has two delightfully squishable boys, and I get the feeling that, between teaching and raising them, she might just be a teensy bit, well, fatigued. But she keeps things positive, and embraces opportunities to have fun with her guys every chance she gets. She has some creative ways to channel her boys’ energy, too, and when I run out of ideas at my house, I think, what would JoeyMom do? I appreciate her for many things, especially for inspiring me.

I found Gretchen, and MOM-NOS during my first foray into special needs blogging, and I remember thinking, “Yes, my son must have autism” at the same time I thought, “This beautiful mom knows what she is doing, and I like her. Maybe I can cling to her. Maybe she will guide me out of my fear and into some light where I can make a plan and find my way.” Yes, thank you Gretchen. And thanks for making me laugh. I love how you write. I love the quotes on your blog; it’s funny, I think YOU are one of those moms who can do everything! I am so glad for all that you share.

Betty and Boo’s mom writes about spectrum stuff, AND she writes about what was my PASSION before I ever had kids or knew much about autism and Aspies: BOOKS! I really appreciate how she pursues that passion, and I live a bit vicariously through her in that department.

PBear leaves me incredibly supportive and useful comments, not just in my blog but by email, from a mom who has been there and gets it. She somehow manages to work, go to school, raise two kids, and send me encouragement. That’s amazing, and I’m grateful.

My dear old friend C reads my blog even though she has heard it all by talking to me on the phone, and then she sends me encouraging messages AND tells me she likes my writing. I’d be lost without C. That goes for E and D too – dear old friends who stick by me come what may.

Kristen has a blog I enjoy reading not just because of what we have in common, but because of her writerly life. I appreciate how she opens up about her writing, and I enjoy reading about her process. I sometimes imagine scenarios in which we meet, hand out, write…

J is a colleague, a friend, who reads my blog and then sends me resources. WOW, everyone needs a friend like that. I am so grateful for the articles, the links, the suggestions, the ideas… not just about autism, but about EVERYTHING. I appreciate J for being a wealth of knowledge.

Know why I like Good Fountain? It’s probably the same reason anyone likes her. Am I wrong, or does she just seems, well, GOOD. I like what she says! I like how she says it! She has good, simple, kind ways about her. I loved it when she said that some of what she likes best about her daughter is what makes her quirky. I sometimes feel that way about my son. And one post she wrote really stuck with me. She said that what we all need to feel good about ourselves is connection with at least one person, and that she hopes her kids have that. Yes, it’s simple, but it’s true… for our kids, for us, one good friend is what it takes. I wish our kids could play together.

JHV and I were f2f friends about a hundred million years ago, but geography and time don’t end friendships with someone you value. I adore JHV, and what I appreciate most? That someone as smart, artistic, spiritual, and busy as she is… she still likes me! I think I’m surprised by it. I miss JHV. I am so thankful she sent her sister to my blog, and Jen of I’m Going Coconuts. I am so grateful she reached out when my boy was diagnosed, had her friends care about me, send their thoughts of love and their generosity to me. I am thankful for JHV’s friendship and love and hope and goodness. I think of her every single day when I see my very favorite photographs.

Jordan probably doesn’t know what a fan I am, because without meaning I tend to lurk over at her blog. I guess I never feel like I have anything to offer, but I value what she has to say. And I can so vividly picture her two sweet sons I’ve never met. I found Jordan because everyone pointed me to her; they said she is a smart mama, and an amazing resource, and they were right. Thanks for all you do for everyone with special needs kiddos, Jordan.

There are tons of things to value about Kyra, but they all relate to her positive nature. Every time I read about the way she uses the Nurtured Heart approach, I admire her more. And another thing: Kyra points me to other blogs and resources that I treasure.

GFCF Mommy helps me feed my son, and find joy in doing it creatively, nutritiously. I am so grateful for that. I know I’ve never commented on her posts, but I am a loyal fan.

Good Mum has made me laugh so hard before that I made embarrassing noises. That is worth its weight in gold!

Jen, who says she’s going Coconuts, is as solid as a rock, and has a big, beautiful, giving heart. I appreciate Jen.

My inlaws read my blog, and I feel so fortunate that they take the time to do that, and that they forgive my wallowing. I tell them pretty much everything, and they still read it online again, and don’t seem to get too sick of me. Listening is an act of love, and they are very loving. I appreciate my mom and dad.

Gwyneth writes some heartfelt comments and sends encouragement all the way from Africa. Years ago, we hung out, went shopping, tried on clothes together, wished our wishes. Never in a jillion years did I picture where our roads would take us. But when she comments from Malawi, I feel like she’s right here. And her blog, Misadventures in Malawi, is captivating, and I appreciate the way she shares her life with me, and lets me share mine with her.

ASDMommy writes so tenderly about parenting, I’ve repeatedly had the urge to hug her, drop by with yummy food and hang out in her kitchen, and then I realize that if I bumped into her in the grocery store I wouldn’t realize it. How is it that we have never really met? I’ve invented her voice in my mind; it’s a clear voice I appreciate every time I read her blog.

I appreciate Hannah’s mom, too… I read about Adopting Autism and find so much perspective within it… and that Hannah is a great character…

And I could go on… but don’t you want me to get a little tiny drop of sleep?
I appreciate you, blogosphere. Love.

Monday, November 23, 2009

Word to the Wise

Dear Kindergarten Parents,
Have your children mentioned a curly haired blonde boy in their class who sometimes has quirky behavior? That would be our son, Rooster, and we want to let you know that, despite his quirks, Roo has more in common with his classmates than he has differences, but that his differences stem from autism.

Rooster does not know about this diagnosis yet, and we want him to hear about it from us, not through conversations with classmates. For this reason, we ask that you please NOT mention his diagnosis to your children until we are ready to talk to him first. We are writing to you in the hope that you will understand our son a little better and feel inspired as we do to help our children become friends.

Autism gets a lot of attention in the news lately, but the media often doesn’t provide a very clear explanation of what autism is, probably because autism isn’t just one thing. Autism is called a “spectrum” because it includes many kinds of disorders. Some people might think of the movie Rain Man, assuming any person with autism is shy, does certain odd things over and over again, and has a special kind of genius. Our son does not have that kind of autism. Rooster is a talkative little boy who is intelligent, affectionate, creative, and loves to make friends. Because he does have so much in common with typical kids, it’s no surprise that people can feel confused by his behaviors and his language. That’s why we thought it would be a good idea to write you this letter, and hopefully help you if your kids have questions.

What does autism mean for the Rooster? For one thing, he has some communication challenges. He has a huge vocabulary, but it’s very hard for him to say what he means. The thoughts are there, but they often come out jumbled, and he gets frustrated sometimes trying to express himself. Sometimes that causes him to “talk nonsense,” or to start a conversation in the middle without any context, or to quote something he memorized from a book or movie. He also has trouble making sense of what people say to him. He just can't listen as fast as most of your children talk, so he takes a while to answer questions, and sometimes he misunderstands what he hears. It’s like trying to read this letter if someone marked out every third or fourth word – it would be confusing and frustrating.

When Rooster gets frustrated, his behavior isn't always ideal. For that reason, we work on language and behavior skills with a trained specialist after school for two hours every day, 10 hours a week.

Our Roo has autism. It's just one more fact about him, like his brown eyes and his curls. We certainly don't want to ever use it as an excuse for him to be anything less than his best, and we expect him to learn how to adapt to the world around him, not the other way around. We also don’t consider his diagnosis a secret or a cause for shame. Rooster hasn’t learned about the word “autism” yet because we don’t feel that at age 5 he is ready to comprehend it or to put that word to good use. But we feel like if we help adults in his community understand it, they can help children be accepting of all children, tolerate all people’s quirks, and be patient with our boy in particular. We know that he has a lot to offer friends, as well as a lot to learn from them.

We are new to this school and we are eager to build a sense of community where our family can make friends, give back, learn and grow. We are always happy to answer any questions anyone in his community might have about autism, or, more importantly, about Rooster. If you have the chance, we hope you'll introduce yourselves to us at school, or by email or phone. We are eager to know you, and to know your children, too. We hope for a happy and successful year for all of Mrs. Smith's* kindergarten class.

Thank you so much for taking the time to read this.

Friday, November 20, 2009

Notable and Quotable Eleven

Me: Rooster, behave yourself.
Rooster: You TOO, Mommy. You too.

Peaches: Mommy, what are they talking about on the radio?
Mommy: (quickly turning off the news, talking about Ft. Hood) A man had a fight with some friends.
Peaches: And they died?
Me: Yes, honey.
Peaches: Like Michael Jackson? And Rosa Parks? And Noah from the Ark?
Me: Yes honey. I am sad to say that is true. Those people died.
Peaches: But nobody in my family dies.

Me: Peaches, STOP touching your brother, or...
Rooster: (hand up) Mommy, I can handle this! Peaches, you behave!

Rooster: Ew, daddy. Stop kissing mommy, that is gross.

Rooster: Mommy, can I kiss you and we get married?

Peaches: When I get big can I marry Rooster?
Me: No, honey, that's not how it works.
Peaches: Ohhhh! But I really want a ring. A big one.

Thursday, November 12, 2009

Happy Thanksgiving, Early

Dear Rooster,
Thank you for tying your shoes tonight. I know it is pretty hard, and I know it takes forever. I know you don't want to, and I know you don't see the point when there is so much Velcro in the world. Thank you for trying, thank you for learning to persevere. Thank you for your delightful smile when you finally finished. I'm so proud of you I could bust.
Love, Mom

Dear ABA friend JT,
Thank you for making the Roo tie his shoes, and thank you for teaching him how. Thank you remaining so calm and patient when he screams and throws his shoes. Thank you for seeming completely and entirely genuine when you cheer loudly at every stage of success over the weeks of shoe tying. Thanks for believing he can do it even when there is no proof. Thanks for understanding that shoe tying has nothing to do with shoes for us, because there IS plenty of Velcro in the world, but everything to do with perseverance. Thanks for helping Roo learn the meaning of the word perseverance.
Warmly, Rooster's Mama

Dear Rooster's Dad,
Thank you for talking me in to trying ABA for our son. Thank you for getting us into the program through Regional Center, signing up for the course, and spending two Saturdays in a row agonizing through the lessons. Thanks for teaching me what you learned, and for helping me apply it. Thanks for helping me remember to celebrate and be grateful. And thanks most of all for marrying me. Now please do something about those dirty clothes! I love you. Your wifecita

Dear Me,
Remember that nothing is forever; it's a double-edged sword. Appreciate what you have, and remember not everyone has it. When nothing else works, try humor. And whenever you can, sleep. Now, for instance.
Good night.

Tuesday, November 10, 2009

Notable and Quotable TEN

Peaches is three.

Peaches: When you get married, you only just (pronounced: yust) get one husband, and that's ALL. No more, yust one.
Peaches: Today at school I made two letters to Santa.
Daddy: What did they say?
Peaches: I don't know. I can't read.

Peaches: How come when it's dark outside it's not even a little bit light, and the blue gets all black?
Nurse: Peaches, I need to put this little machine on your finger, and it's not going to hurt at all, it's going to help us find out how well you are breathing.
Peaches: Oh, does it take my pulse?
Nurse: HOW old did you say she is?

Saturday, November 7, 2009

Where Are You?

Dear G,
Well, I've been avoiding doing this, but I feel like I have to say something. I mean, KNOCK KNOCK, are you still there? I'm worried about you. You've gone all... dark and quiet, so unlike you. I think I like it better when you rant and rave. Since you've been in retreat or whatever I've been thinking you might explode, you know? You're usually so... emotive! What's going on? Are you mad, sad, scared? Is it all about autism, or is it more? Can I do anything? Take care of yourself... WRITE.

Dear Me,
Thanks. Good questions. Not sure. Yes, and no. I'm ok, I think. Just can't quite find my sentences. Maybe a poem?

Where was I?
Wound licking
worry wicking
nothing clicking

treat tricking
list ticking

fingers flicking
a bit of ass kicking

no room for goldbricking
stuck doors still sticking
mind-pimple picking

thin or thicking
where i am

Love, G