((Hugs))

The only thing better than being a boy obsessed with Lego, and having a new Lego to put together…

is when your sister, whom you adore, suddenly, inexplicably, begins sharing your interest with you.

Here they are, beginning to work on one of Seth’s Christmas presents. We like to space things out. Save some for a snowy day. Seth is so happy she is playing Lego with him. Letting him lead. He is the Lego expert you know.

In other news, Riley hugged HT the other day. She is not a cold unaffectionate person by any means, and always allows our affection, but it was the first time she spontaneously hugged him, and he could not wait to tell me. It’s one of those things an outsider just does not get. If you were hanging out with us, you wouldn’t assume she’d never hugged her dad on her own before. It would be a given for most kids.

My dear friend’s husband died when her son was just five. She says, one of the hardest parts has been…the feeling of there not being another person who knows stuff like this. Shared intimate moments about your kid. Only Todd and I know what Riley looked like the morning when she was six months old, and he returned from a business trip and we lay in bed, and she showed him how she had learned to clap while he was away.

Only the two of us remember when Seth used to say, Yi Yuv You Yie-yee, (I love you Riley).

So when he tells me she hugged him, I get it. The depth of it, reflected in the glint of his eyes as he smiles.

When she shares her brother’s interest, we know what a big deal it is.We’ll remember it.

The gift of autism, for us, is we don’t tend to take things for granted.

I mean, sometimes we do, but typically we don’t.

She makes our lives so much richer.

Just ask her dad.

She Has Buckets of Empathy

Today was the first day of this season’s Girls on the Run. I had the lesson prepared, my flashcards at the ready and was enjoying leading the new group. Seth usually hangs out in the gym while we meet. Smack in the middle of our session he came running over to me, holding his mouth. He made it to the trash can where he proceeded to be sick. Repeatedly.

We needed to leave.

The other coach heroically stepped in and winged it, and offered to drop Riley off later.

As soon as Riley got home, she ran upstairs to check on her brother. Then, she brought a picture of his crush (Diana Agron from Glee) and taped it to his pillow to make him feel better.

This girl, is not without empathy. She has such a big heart.

Our little man may not be feeling so hot, but he sure is well loved.

P.S. Don’t Seth and Diana make a cute couple?

The King’s Speech, Stuttering, Tics, PANDAS

The other night we went to see The King’s Speech. If you have not see it yet, I’m sure you’ve at least heard about this gorgeous movie. Colin Firth won an Oscar last night for his performance in it. The film is about a relationship between a speech therapist and a man who eventually becomes the King of England.

The future king has a stutter, …the result of emotional trauma as a child.

Seth stammers. Or is it a vocal tic? Or a combo of both.

Sometimes it’s barely noticeable. Sometimes it can take him 15 tries to get the first word of a sentence out.

And watching the movie sent me reeling…all the guilt about what this boy has endured as a special needs sibling. All the moments I had not one drop of energy left for him. I stopped breastfeeding him in one day when he was six months old because I had a panic attack and could not deal and had no support. All the times during those very trying years when I needed to run from the house, to catch my breath, leaving him behind. Both parents got away separately, even just a trip to the grocery store, but he never did.

What was it like for him to be woken from every single sleep as an infant and toddler to the sounds of his sister screaming(not your fault Riley, you could not help it)? What is it like to be so “perfect” all the time, not rocking the boat, because intuitively he knows his mom and dad are counting on him to not make waves.

What’s it been like to never not once take his frustrations out on his sibling, because she can’t help it/handle it/will scream more.

What’s it been like to grow up in a home where it is rarely about him?

Then again, maybe it isn’t a stutter. Maybe it’s PANDAS. Seth’s tics overall have been exacerbating lately, and it happens after he’s been sick. Sometimes I wonder if his love of Michael Jackson’s moves is because they are so jerky and staccato and can hide a lot of tics. Right now it’s a full body seize followed by an arm circle. They change up a lot. He seems to be able to hold them in a bit before really letting them out. Is it Tourettes? For a few weeks I was laying awake at night, wrestling with how to help him, worrying about long term repercussions of an inflamed brain (the hypothesis behind PANDAS and tics) vs. the repercussions of long term anti-biotic use.

After trying many different modalities of boosting his immune system so he will be less susceptible to strep, we are also finally going the antibiotic route for him. We’re at least trying it to see if it helps.

His regular pediatrician doesn’t seem concerned(or knowledgable about PANDAS). He was not at all interested in reading Saving Sammy. I wonder how he would feel if it were his child suddenly wracked with tics overnight?

Luckily, our kids’ other doctor, the one who treats autism is very knowledgeable about PANDAS, and very comfortable treating it. The only problem is she doesn’t take insurance. Which is actually good, because she isn’t governed by insurance companies on how to treat patients, but you know. It costs a lot.

I’m feeling this need to take him away for an extended time, just me and him, go to the mountains. Go to the beach. I don’t know. Not really do-able, but the desire is there. I’ve signed up to teach a Lego class (architecture, history of Lego, etc.) at the co-op because it is his passion.

Lately, I notice in play with other boys he is not standing up for himself. They like to take his hat and play keep-away with it. He acts good natured about it, but I know it bothers him, and there have been times when he’s looked on the verge of crying when it’s happened. (And let me be the first to say, I’d have been the kid having a good old time taking the hat when I was his age). I admit to stepping in and I probably should just let him lose his shit on these kids but I’m not sure he would.

Intuitively I know he is okay. I know he is a deep, deep soul who will be fine, fine, fine. I’m not trying to make drama where drama isn’t due, but I’ve got my eye on you buddy. You will not slip through the cracks. I promise.

Anyway…I loved the The King’s Speech. It was brilliant and beautiful.

Just like my boy.

Special Sibs

This is Seth, forcing Riley to smile. She’d been fussing, so he moved right in and did this, making her laugh. The pic was slightly out of focus, so I was playing around with it, and I liked how the solarizing made her doll house and dresser pop. I thought the special effect captured perfectly the goofiness of my weird and wonderful kiddos.

Homeschooling One

“Sweet ride, man.”

“That’s right, eat your hearts out suckers.”

“Uh. I mean, thanks.”

One of the cool things about our neighborhood is in the winter, you can pull your kid home from school on a sled.

That is, if your kid isn’t doing her school work at the kitchen table.

*

I hadn’t thought about the effects homeschooling Riley would have on Seth but they are profound. No longer does he have to listen to his sister scream all evening over homework. They can enjoy each other in the evenings and have fun playing together. No longer does he have to deal with an exasperated parent, glaring at him and shooing him from the room during his sister’s homework, because he is distracting, and said parent is at the end of their rope.

And mornings! Mornings are so easy now! I’m not kidding. Getting one neurotypical kid off to school is a piece of cake. Mornings are unrushed and peaceful and Seth goes to school joyfully.  

HT is home most mornings, so he is downstairs working with Riley on math as I type this. He supports me fully in getting time to myself. God forbid I couldn’t “get my blog on.”

So far so good.

 

*Not enough has been made of Jingle’s cute paws. Riley is a big fan of her colorful pads.

Map of a Character

seth character map

At school last week, Riley had to do a “character map” and of course she picked her favorite person, Seth, to focus on. I don’t know if you can read the above so I will type it out for you: Seth is hungry, playful, funny and crazy.

Evidence he is hungry:

1) he tells us he is hungry

2) wants to eat more

3) eats different things

Evidence he is playful:

1) plays with me

2) fun to play with

Evidence he’s funny:

1) does funny things when we’re eating

2)tells me funny stuff

3) draws funny things

Evidence he is crazy:

1) draws weird pictures of me

2) plays weird stuff with me that I don’t want to play

So the evidence is in. Seth is a hungry, playful, funny, crazy kid.

Spot on Riley. You are spot on.

There you have it, and she oughta know.