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I have a friend whose son has Down Syndrome (Note the spelling, okay? Many who have kids with Down Syndrome are sick of people erroneously calling it Down’s Syndrome. They don’t have “Down’s” kids. It is “Down” no “s” Syndrome, capiche’)? Wow! Look at me going all editor on your butt. The irony is not lost here since I constantly e-mail Carrie to check for things like this.

Anyhoo. My friend and I have discussed before how having a child with physical characteristics makes life easier, by way of people automatically knowing something is up, and most of the time offering compassion.

I’m not saying DS is always easy and those parents have it made. I grew up with a boy with DS in my family and though he is mostly a joyful guy, he can be a handful for sure.

Last night I read quite possibly the most beautiful blog post I have ever come across. It is about a woman who gives birth to a little girl who unexpectedly has Down Syndrome.

The first words the doctor says to her before giving the diagnosis are, “She’s beautiful. She’s perfect.”

What would it mean to hear those words before receiving an autism spectrum diagnosis? 

What would it be like for therapies and services (covered by insurance) to be offered to your child from the second they came home from the hospital?  Or at the very least, as soon as they received a diagnosis?

What would it be like for most people you come across to cut your child (and you) a break?

What would it be like to not have to stumble through the first years of your child’s life, trying to figure it out what is going on? What is the deal?

The woman in the blog post knew instantly her child had DS. It floored her all in one swoop. Was it easier to gently (or not so gently) have the signs of special needs show up gradually over time?

Do yourselves a favor and read her glorious post.

I read it a couple of days ago and can’t stop thinking about it.

The blog is titled, Enjoying the Small Things.

It is beautiful.

It is perfect.  

Love.

*There is sound attached to the post so turn down your volume if reading at work!   :  )

*Thanks to Courtney for recommending her blog!

Chloe is a 19 year old young woman with Asperger’s. She has a service dog named Indy. Though we’ve never met in person, I feel very connected to her, and her mom Mary, both of whom read this blog. Chloe recently made her local paper for running a knitting group in her community. Congratulations Chloe!

Call me tickled pink!

Goal Achieved.

*Seth doing Superman/Soulja Boy at last night’s school dance.

Back in Jan. I wrote this post. Our kids take a therapeutic dance class. Seth does not really need the “therapeutic” part, but he joins along. Our goal was for Riley to be able to enjoy herself at social gatherings where there would be dancing. To be familiar with the steps, so she could have fun amidst the sensory overload    the loud noises and blinking lights and crowded dance floors of her future. She loves music and dancing, but would become very upset if she couldn’t keep up. Last year she wound up running from the gym screaming.

Here are Riley and Seth doing the Cha Cha slide.  

 
If you liked that, hold on to your hat. Here’s Seth’s Michael Jackson tribute. He didn’t learn these moves in dance class. He just watched a lot of MJ on You Tube.

Annie are you okay? Annie are you okay?

And here we have Seth’s little buddy, who was definitely in a zone… I love this kid. Notice how cool Seth is, despite all his MJ emulating ability, he gives his friend lots of space to be in the light. That’s how my kid rolls.

Riley joined a conga line, and didn’t once get upset, even though she was tired at this point, and even when the kid behind her lost grip and the line broke apart. That kind of thing might have derailed her in the past.

And here we have The Macarena. Watch as Seth gets mauled by the angel in the tiara. She thinks Seth is dreamy, and followed him around, begging for his attention all evening. He was kind, but serious, he had a lot of moves he didn’t want to deny the world and he didn’t have time for romance.

And this is why we pay the big bucks for dance therapy. Joy.

Worth every single penny.

She loves her cello, but sometimes Riley does not want to practice. It isn’t that she doesn’t want to play, but with autism transitions are especially difficult. Stop doing this to do that?

It is overwhelming to her.

But then, the cello might speak, and say, “Oh Riley. Please take me out of my case. I was so looking forward to playing with you today.”

Okay, I admit it’s me, but she usually responds favorably if  “the cello” makes the request, rather than her mother.

Sometimes when she gets frustrated during practice, and maybe even screams, I grab the cello and rock it like a baby,

“Oh cello. She didn’t mean to scare you. She really loves you and the beautiful sounds you make. She is just frustrated. There, there, cello. It’s all right.”

I rock the cello until she has regained her composure. It’s far more effective than trying to convince her to buck up and keep practicing. If handled this way, she never fails to return to the cello to finish her lesson.

Yesterday morning, the first day back from my trip, she wanted to show me something new the cello could do. She dragged the bow slowly across two low notes,

“The cello can cry,” she said.

I went over and picked up the cello. I rocked it,

“Oh cello. Why are you crying? Are you sad?” I asked.

This time Riley spoke for the cello,

 “I thought you’d never come back.”

Keeping my eyes on the cello in my arms, I continued to sway,

“Oh little cello. I will ALWAYS come back. I love you so much I could never not come back. I promise, I will always come back to you.”

After a moment, Riley reached over with her bow, played two short, much bouncier notes.

“What did the cello say?” I asked.

“It said, ‘Okay.’ “

When cello practice was over, she put it back in its case. She went over to the book shelf, picked up Little Women, got all comfy with blankets and Jingle and waited for me to join her on the couch; our usual routine.

Homeschooling is going really well.

We’re still kind of finding our way, and sometimes fear creeps in, but every time I start to doubt I meet kids who are being homeschooled and, well, I really like them. They are articulate. They are smart. They are well read. They don’t care so much what people think about them. They seem to know who they are. 

We’re not exactly unschoolers, but we’re not strict curriculum enthusiasts either. Our days have lots of flexibility. If we don’t get something done today, ah, well….there is always tomorrow.  

I first saw the video below on The Organic Sister’s blog.

Do I dare hope Riley might go to summer camp at a place like this one day when she is a teen? 

I do. I really do. 

Not Back to School Camp: A Glance Within from Allen Ellis on Vimeo.

“Soap makes your hands slippery to the germs and they slide right off.”

We are very much social creatures who model ourselves on one another. Every time you take a step and walk with your fear, you’ll never know the impact. But you can be certain somebody’s watching, and that courage is contagious.

-Frances Moore Lappé, author of Diet for a Small Planet, interviewed in Yes! Magazine, 2004

You might already know I’m the stalker fan devoted publicist of young adult author Courtney Sheinmel, but don’t hold that against her. Check out the new video for her latest book, Positively! It was made by a librarian. In my book, (heh-heh, get it? My book) librarians are truly some of the best people on the planet. They’re just so incredibly helpful! I think there should be a Librarian Appreciation Day. Who’s in? 

Courtney, take it away….   

I don’t know why the video fails to mention two certain characters in the book named Riley and Seth, but whatever. It’s still good.