Saturday, February 25, 2012

This is How We Roll

I have the best and most generous husband.
He loves me, supports me, puts up with all my craziness, and also deserves a dad of the year award. He is so great that he will not mind me telling a story about him; he knows we laugh with him, not at him.

So he calls me from the store today, and it goes like this.

"Hey, honey," he says. "I heard you say we needed bread for the Rooster so I stopped at the store to get it. Do you need anything else?"

"Oh, thanks, J. No, I just really needed the bread. Feel free to pick up some protein the kids will eat too, if you see something good, but bread is the only thing I really needed urgently."

"Okay, bread and protein, and we will see you soon."

He comes in with four bags of groceries. I put them away.

Later that day, he says, "I'm glad I stopped at that store." Shopping is not his usual thing, and he's feeling good about his efforts. "Did it help you out?"

I say yes, it did. "Thank you," I say.

He says, "We should be okay for the week ahead now, right?"

I go to about 4 grocery stores a week, but I don't want to sound unappreciative. I say, "Well, I might still need to shop a little. Because... did you get any bread? Because I didn't see any."

He scratches his head. "Yes, I did. I bought bread. Didn't I? I mean... I went for bread right? I thought I... wait. I will look. Let me check the... I ... no. I didn't get any bread."

He did buy chocolate muffins. He did buy donuts. He did buy pizza.

Mind you, none of those are for himself, or for me. They are free of gluten, dairy, nuts, and soy, from the ridiculously expensive specialty store we consider ourselves lucky to have in the neighborhood, where we go especially to make sure our Rooster always has his favorite, beloved, Udi bread.

People, this is just who we are. A rooster who has special bread needs. A somewhat organizationally challenged dad who always, always helps his ornery family. A peach who spent the day trying to negotiate her way into a donut or a muffin (to no avail). And a mom who blogs about it.

Sunday, February 19, 2012

Facebook Wisdom

Right now, my son is sitting on the sofa with an apple in his hand listening to Greek mythology on the iPad. He will be eight in about three months, and he has autism.

Right now, my daughter is in the bath tub playing with toys. From my spot in my bedroom, I can see her through the French door to the master bath, talking to herself, acting out some kind of scene. She will be six next month.

Today I really liked it when some of the mama's I adore in the blogosphere posted this on facebook: "It's hard having an autistic child. It's even harder being an autistic child." I think it's true and valid. I feel like I could see my son posting it when he's old enough, if fb is still around in another five or six years.

I also think it's valid to post this: "It's hard being an autistic child. It's even harder having an autistic child." It might seem impossible to think both are true, or it might make me sound obnoxious to say it. But that's okay. I also liked it that some friends posted this Dr. Seuss quote: "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."

When it comes to the question of autism's difficulty, what I feel is this: it's all about perspective, this life of ours, and along with it, this business of "harder." After all, can you really compare? Is suffering really measurable? How many of you believe that those pain-o-meter pictures in the hospital that ask you how to quantify your distress really mean that the doctor understands what you are going through when you tell him you are at level 3 or 5 or 7?

I can't speak for my son, who has autism, about how hard his life is or isn't, from his perspective or my own. I can't really compare my challenges to his. But I value the reminder in the facebook post that he very well might have the perspective that autism is harder for him than it is for me. I know that there are days his sister would likely argue it's no walk in the park for her, either, that her brother has autism, and I think she'd have a valid point, a right to her perspective and to some kind of fb quote all her own. I'm okay with anyone who wants to say they have it rough, who want us to know their perspective on how hard things are. Difficulties come on a spectrum.

I'd argue, too, that there could be a lot worse things in our lives than having autism in it. One would be not having autism in it, if it meant that there would not be a little boy sitting on the sofa with an apple in his hand listening to Greek mythology. Things at our house seem pretty hard through some looking glasses. But warm baths and juicy apples and learning and imaginative play and love look pretty beautiful too. I know my mama friends would agree with this without even asking them.

I just saw yet another quote on fb that resonates for me, and with this post, and so I will leave you with that: "Feelings are much like waves, we can't stop them from coming but we can choose which one to surf."

Thanks, friends. See you on facebook.

Sunday, February 12, 2012

What Next?

My husband and I often talk about what to do with what we have learned about autism.

I hope the metaphor doesn't offend, but I tend to call it "making lemonade."

We have no desire to profit from autism by exploiting our son or our story. We have no desire for anyone else to exploit our family. We do have a desire to change the world.

My husband is a writer, director, and producer. I am an educator. We ask ourselves should we write a book, design a web site, make a movie, start a school, begin a revolution? Are these crazy impossible dreams?

Maybe we should just keep putting one foot in front of the other. Or maybe there is an incredibly satisfying lemonade stand in our future that can make a difference in the autism community.

Any thoughts?

Sunday, February 5, 2012

Good Stuff

Today I am faking it til I make it.

In other words, I'm not going to tell you how sick we've all been, or stressed, or about the battles.

Nope! Here is what is going RIGHT:

  • Rooster came home the other day and said, "Let's practice math now! I want to earn my reward!" The school has also agreed to increase his math support and stop forcing him to do the grade level work he just is not ready for yet. Yet, right? Yet.
  • My husband wants to help me with my work so I get to watch part of the Super Bowl. Love that guy.
  • I met an awesome mom at Social Skills the other day. She promises to hook me up with some resources I didn't know about before.
  • We went on a date last night! Our former aide came to babysit at 7 so we could catch a movie for the first time is a couple years. The Descendants was sad but good, and my friend Grace is in it!
  • My mom and step dad are coming to visit us and my in-laws for a family weekend in April!
  • I have some new ideas. Some crazy, some great, some scary, some all of the above.
  • I'm still standing.

Share your good news, if you don't mind. I'd like to celebrate you too.

Friday, February 3, 2012

Says it All

I have written 505 posts for this blog. I just saw that number for the first time and can't quite process it. I write ten times that many in my head during my commute. I have so much to write about - just not enough to say. I really only have about 3 things to say. I just have endless ways to say it.

I think things are getting harder.