What a child with Asperger’s and her sibling would like you to know…

Yesterday I posted this on Facebook:

“There are reports coming out that the CT school shooter had Asperger’s. Please on behalf of my sweet girl and others like her, PLEASE correct and stand up to any ignorance you see on this. My child with Asperger’s would rather die herself than harm another soul.”

We told the kids about the shootings yesterday. They were obviously sad about it and had a lot of questions, most of them pertaining to their own safety, which is pretty normal for kids.

Today we talked with Riley (12) and Seth (10) about the shooter allegedly being diagnosed with Asperger’s. Riley immediately felt fear that people would think every person with Asperger’s was bad. Seth says he felt scared for Riley.

This is what Riley would like you to know:

“Note to everybody, I am not a bad person. Just because that man with Asperger’s shot those people doesn’t mean that I’m bad. Just like when the Japanese bombed Pearl Harbor everyone thought every Asian person was bad but they’re not. Consider what my mom said about this, and it’s true that I would rather die than hurt somebody.”

Seth says,

“Not all people with Asperger’s are bad, and most are really nice.  I know a lot of them that are really sweet. My sister is really nice and she would never harm anybody. I’ve never met a mean person with Asperger’s.”

We are so sorry for all the people who lost their loved ones.


Gratitude at Bedtime

He puts the bookmark in his book, and we say prayers and he tells me what he’s grateful for. Tucking Seth into bed, I look at his sweet face long and hard and this is what I tell him.

“Seth. If ever I have a hard day, or I feel down, or I feel like the world is out to get me, or my life sucks, all I have to do it look at you to know that isn’t true, because I got you for a kid.”

He smiles and we look into each other’s eyes for a long, long time. And I know that it might not be easy for him at times. I know there has not been enough of me to go around. And I know it doesn’t matter.

He knows. He is my heart.

Music Therapy

Last night was the music party which completed Riley’s year of music therapy. It was bitter sweet for me, because she will not be continuing with music therapy in the fall.

Riley has a wonderful musical ear, which we tried to encourage from a very young age, but formal instruction proved too stressful for her. We felt she was on the verge of throwing the towel in and wanted her to continue to love music, so we made the choice for MT. Over the last three years she has grown so much. She is no longer the little girl having a panic attack if she played a wrong note (fingers not as precise as her ear). She gained so much confidence and grew close to her therapist.

At the recital last night, I sat and watched as many people of various ages and abilities performed. You need tissues for that music party. One woman comes up to the microphone so excited she throws her hat into the air, (three times) before singing. Joy just uncontainable in her. Another student, a man with Down Syndrome, learned to play the graduation theme on the piano. He worked so very hard, taking several slow seconds between many of his notes, but he persevered and he did it. He dedicated the song to his niece who was graduating this year.

There was a group of young women who call themselves Best Friends Forever who performed a few songs together. Music therapy providing a peer group for them.

As I watched these children and young adults and older adults perform, I was struck by the love that has gone into each and every one of them. Many of them will never live independently. Someone is taking care of them. They are cared for. Someone gets them to music therapy. Gets their “nice clothes” ready for them. They are loved.

One man who was blind, and cognitively young, insisted we all sing along to the songs he played on the omnichord. He played Oh When the Saints Go Marching In and and He’s Got the Whole World in His Hands. And everyone sang along. And I felt He did have the whole world in his hands. I felt like we’re all going to be okay.

Seth rocked out in his chair to the Bruno Mars songs that a couple of students performed, taking these performers as seriously as he would any other, even if they mumbled through words and stood stiffly at the microphone.

Riley performed a duet with her therapist. They played Kelly Clarkson’s Breakaway. My girl played the piano and sang these words,

I’ll spread my wings and I’ll learn how to fly
I’ll do what it takes til’ I touch the sky
And I’ll make a wish
Take a chance
Make a change
And breakaway
Out of the darkness and into the sun
But I won’t forget all the ones that I love
I’ll take a risk
Take a chance
Make a change
And breakaway  

She hopped up to the microphone to introduce herself and took the cutest little bow at the end. Full of happy confidence. Her voice a sweet soprano. Her fingers doing the job on the piano.

On the way out, the man who was blind was being led by an aide dressed in scrubs. He asked her, “Are you proud of me?”

She said in voice filled with so much love, “You have no idea.” He smiled big as he shuffled off toward their car, with her at his elbow.

I am so thankful for The Cleveland Music School Settlement where people of all abilities are allowed to grow and experience music. It is such a unique place. The Settlement turns 100 this year. Imagine how many students have passed through its doors!  I am so thankful that Riley was provided a safe place to foster a love of music over the last three years. It’s been a beautiful experience for her.

I’ll spread my wings and I’ll learn how to fly
I’ll do what it takes til’ I touch the sky
And I’ll make a wish
Take a chance
Make a change
And breakaway
Out of the darkness and into the sun
But I won’t forget all the ones that I love
I’ll take a risk
Take a chance
Make a change
And breakaway  

Lunch Time Compliments

We were sitting at the kitchen table for lunch yesterday, and I made a request,

“Riley. Tell me something good about your brother!”

Munching on a piece of apple* she said, “Well, he’s fun to play with and he does nice things.” She paused, and added,

“He’s a do-gooder.”

I don’t know where she picked up the term. You don’t really hear “do-gooder” very much anymore. And if you do, it’s usually in the pejorative sense, but she meant it absolutely sincerely. I almost fell off my chair from the love.

Seth considered this, and smiled shyly.

Next, I asked Seth to tell me something good about his sister.

“She’s nice. And she’s a good listener.”

It’s true. Seth is chatty. And he’s home all day. And mothers have many, many things to do, like check Facebook, so they aren’t always available to truly listen. Riley is much better than I at absorbing him, and being interested in all he has to say about Lego and Michael Jackson, and Chihuahuas.

One do-gooder.

One good listener.

And one mom who is head over heels for both of them.

*I  put a little cinnamon and sugar in a sandwich bag and put the apple slices in and shake it up to coat them. It’s a quick, easy, healthy-ish treat and jazzes up the apple, because let’s face it. Apples get boring. I added this just in case you care.


Sister Assist

The kids are taking a play-writing class. They worked on character development the first week, and this week they are to bring a scene, already written, back to class.

One scene.

Riley’s written two very lengthy ones, and could go on. Seth struggles with one.

He sits at the table, forlorn. He has it in his head, can’t get it on the paper.

Finally, I let him dictate to me and then when we’re finished, I ask him to copy it in his own handwriting. It’s important the boy be able to write if he’s capable of it, and he is.

He starts, then gets teary. It is so much to copy. He’s paralyzed. I am losing patience.

Riley says, “Mom, it’s just that he’s overwhelmed.”

“I know Riley, but he’s not doing anything.” Exasperated, I look at her and say, “Why don’t you help him.”

She goes over to the paper, takes a second sheet and covers up all but the line he is currently writing. Relief washes over him, and he begins to write.

One line at a time.

Big Fun and Mac’s Backs After Tommy’s

We went to the Coventry area for dinner tonight. It was too hot to cook. Attached to the wonderful Tommy’s restaurant is the infamous Mac’s Backs. A local independent. A Cleveland establishment. I brought some of my bumper stickers and put them on the bulletin board, but when it came to talking to Suzanne, I totally chickened out. I can promote the daylights out of anyone else’s work, but for some reason, my own? Not so much.

It’s not that I don’t believe in the book. I do. I know it has an audience. Over and over I am hearing from readers, “I couldn’t put it down.” People are reading it in one or two days. I’m not saying Daughter of the Drunk at the Bar is a masterpiece, but’s it’s my own, and people (even those I don’t know) are e-mailing me unsolicited and saying good things. 

Back to Mac’s Backs. We walked out. I had lots of excuses. I needed to put more money in the parking meter. The kids were suddenly thirsty. So many reasons why I couldn’t talk to Suzanne. Not then. Maybe another day, when the kids aren’t with me. It’s too hard. I don’t want to bother her. Gotta run. 

So anyway…right near Mac’s Backs is a store called Big Fun. Seth’s favorite. A novelty store full of crazy toys, nostalgic things, gross things, FUN things. Some freaky things. Packed to the gills with “Big Fun.” Even the ceilings are painted in graffiti. Riley has never gone in. It has always been too, too much for her heightened sensory system. Merely peeping in the window has frightened her.  

Tonight as we were walking by I asked if she would like to go in. Predictably, she said no. We stood in front. Little brother perfectly willing not to push for it, not to upset her, totally wanting to go in. I said, “Riley, I think you are at the point where you could do this now. You are handling things so much better. You are really growing up.”

She is.

Seth looked hopeful but tried to act casual. He shrugged, hands in pockets, fedora on his head.

“I don’t know,” she said.

Gently I said, “Riley, I think your fear of this is worse than the actual reality of what’s inside. You can do this.”

We stood there, the three of us taking deep breaths, getting up her nerve. She clutched my hand tightly and at last, we went through the door. Once in, she was cautious for about sixty seconds, repeating to herself, “I can do this. I can do this.” Then, she wound up loving it. So many fascinating trinkets to look at. So many whoopie cushions.

Watching my daughter explore the store, I admired her so much. She is so brave. I am such a chicken.

The kids had their big fun for a half hour. Stepping out of the store, it was my turn. If she could be that brave, I could too. Back to Mac’s Backs.

Suzanne was there, warm and lovely. Supportive. She bought a copy of Daughter of the Drunk at the Bar (which I had in my bag) and said she’d order more to sell in the store. Can you hear me exhale?

The Universe wants to support me, if only I’m brave enough to ask.

I can do this.

I can do this.

I learned it from my girl.

Proud Little Mermaid

If any of you read my contribution to the Special Gifts anthology, you would know about our early experiences with swimming pools and Riley. The sensory bombardment of a locker room, a hot day, bright sun reflecting off the water, people splashing, the strong smell of chlorine, kids squealing, cold water, adult chatter. It was pure hell for Riley as an extremely sensory defensive toddler.

Throw a new baby into the mix, and us living in an area with no family what-so-ever for support and swimming was put on a back burner. Important, yes….but so many other things had to come first.

She’s taken private one-on-one lessons but it was a delicate thing. With her intense anxiety, if you pushed her too hard, you would never get her in the pool again. So, she’s eleven and still can’t swim.

We went for her second lesson this week with a new teacher. It is a different way to learn.

It almost reminds me of the floor time we did when she was little. The teacher rocks her like a little baby in the water. Riley looks completely blissed out. The point is to get her to enjoy and be soothed by the water. When you are tense, you can’t move your body effectively to swim. So by relaxing her, I mean REALLY relaxing…I swear her brain is being re-patterend.

As Riley walked over to the pool to meet her teacher Monday, Seth and I joined hands, closed our eyes and I led him on a gorgeous meditation, where we saw him and his sister on vacation somewhere beautiful, swimming freely, enjoying the water. We imagined Riley underwater like a little mermaid….pure joy.

After that we read a little from a Cricket Magazine someone had left on the table. The next time I looked up, I saw my daughter go underwater up to her goggles. Mouth and nose submerged.


I held my breath.

The next time I looked up, I saw my daughter go completely under water, remain there for a second, then come up smiling.


And then she did it again. And again. And again.

And I cried.

This was her second lesson. And no, she can’t swim yet. But she has overcome the most monumental hurdle, and it won’t be long.

Great, now I’m crying again.

Talk amongst yourselves.



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.

Seth’s Manifestation of His Puppy

One of the biggest regrets I had when I stopped blogging was not having the opportunity to share Seth’s puppy with you.

Back in September, I did put up a piece about it over at my friend Betsy’s Autism Law of Attraction blog. Seth is the most positive person you are going to meet. No coincidence he’s also amazing at manifesting his heart’s desires.

Anyway…I hope you enjoy the story of Seth’s manifestation of Yippee.

They are one happy pair.

German Shoulders

Read or listen

On Tuesdays, Riley has music therapy at the Cleveland Music School Settlement. This has become a special time for Seth and I. We head to the lounge on the second floor, and I give him $0.35. He goes to the vending machine and procures himself a small pack of Juicy Fruit.

He offers me a piece, pops one into his own mouth, and we sit together on a sofa, hunkering down for 45 minutes of reading Indiana Jones together. We’ve made it through Raiders of the Lost Ark, and Temple of Doom, and we’re now half way through Last Crusade. Indy and his father are trapped, tied to a chair. When the room goes up in flames, Seth’s eyes go wide.

When Indy poses as a ticket taker on a huge aircraft, slugs the bad guy, then turns to find the rest of the passengers intimidated and waving their tickets, Seth chuckles. There is a lot of humor in these stories and Seth gets every punch line. However, nothing is more funny to him than when his mother misreads “German soldiers” as “German shoulders.” I don’t mean to do it, but I swear it happens every time.

I used to feel guilty about dragging Seth to all of Riley’s therapies and appointments, but not anymore. These are some of the best one-on-ones we have. Reading, laughing, connecting, looking each other in the eye, chomping Juicy Fruit.

Seth and his mom.

We’ll always have German shoulders.

Tucking Seth in on his last day of first grade

“So how was your last day of school?”


“Did your teacher yell at anyone?”  FYI his teacher in not one to yell at anyone ever…I just live to make him laugh with the irony of my questions. He’s used to it.  


“Shove anyone down?”


“Punch anyone in the face?”


“Kick anyone in the shin?”    

He’s had enough of my shenanigans so he feigns sleep, pretends to snore…



“Cashew? Don’t mind if I do!” I say, taking a nibble of his ear. Long running joke, his ears taste like cashews. He squirms away, putting his blanket over his head. I pull it down.

“Mom, who was that guy, that bit that guy’s ear off?”

“Mike Tyson?”


“Why did he do it?”

“Well. He seems to be someone who has no impulse control.”

“What’s impulse control?”

“Most people have urges to do things, but our brains take a moment to think about them, and we stop if the thing we feel like doing is inappropriate, or violent, or harmful. Impulse control is what lets us take that moment and stop.”

He thinks about this for about thirty seconds then says,

“Some people think ____ (the kid who bullied his class all year) is mean, but I think he just has a problem with his brain.”

“I think you’re right buddy.”

He looks at me thoughtfully.

I kiss him good-night on the cheek.

He wipes it off, per usual.

Living Laughing Loving

live love laugh






This is what Seth picked out of the prize box at school. They get prizes in his class when caught doing something good. It’s a checkbook holder. He “thought it matched what we do in our family.”  Now that I think of it, I never even found out what “good” he did.

To think he would forgo the stickers, and doodads, and pick this. 

He just melts me sometimes, you know?

Like, every day.

When he says “thank you” every single time without fail as I put food down in front of him.

When he doesn’t like something I’ve cooked, but doesn’t want to hurt my feelings, so he says, “I kind of like it, and kind of don’t like it.”

When he makes a point of mentioning to others at school that T. (the boy with Asperger’s) is the smartest one in his class.

When he mistakenly says his daddy has a bulb (bald) head.

I could go on for miles about this boy.

I love him much.

The Thrill of the Ride



Yesterday, I took my son to the Kalahari Indoor Waterpark.  



He had so much fun, riding the waves on an inner tube in the wave pool.  He hasn’t been swimming for very long, and doesn’t like water hitting him in the face, but he overcame it because the thrill of the ride was worth it. After an hour or two, he was just dealing with it, laughing with glee each time a wave caught his tube and took him in toward fake shore.  I watched for hours, marveling at how easy and joyful he is. How fun. How beautiful. How sweet. Whenever his raft hit anyone else (and it was inevitable, everyone’s tube crashed into everyone else’s) he would ask, “Are you okay?” and mean it. This boy is so very aware of other people, and so considerate.

This day was about him and I vowed to let him stay as long as he wanted. We were there 10:30AM -1:00PM, then again from 3-6:30PM. Waterlogged, both of us.

In between waves, we took a couple of trips down a winding fake river, floating on a double innertube. He was in front, hanging over the edge with his arms, kicking his legs.  I relaxed in the back, enjoying the slow floaty ride.

There was a kiddie section, which was basically a climbing structure, where water got dumped on your head constantly. Good times. (If you like water dumped on your head).    

We said to hell with the organic diet and ate at Friendly’s, his favorite. Then we stayed at a hotel. The waterpark is just an hour or so from home, but the hotel stay made it a real trip for him. The Marriot. Gotta have the Marriot, with the cotton sheets. Not the plastic polyester crap. Marriot all the way, baby! It’s not more expensive and they give you four pillows each. Bedding is important.

We goofed on each other before lights out. Taking silly pictures. 



Meanwhile, back at the ranch, HT took Riley bowling for the first time at Freeway Lanes in Mentor. It is something he enjoyed as a kid. Luckily they were the only people in the alley. No one for her to compare herself to. One time, her ball landed two lanes over, but she wound up doing okay, bowled a 71 (means nothing to me). They had fun.

Then they found  “Brittany” at a local bookstore. Love was in the air…



Riley decided to break up with Alvin, because it was clear he was in love with Brittany.



Lucky for him, she does not hold a grudge, and seems just as happy to observe their relationship from afar.



Seth got home in time to go to the birthday party of the little girl who could not keep her hands off him at the school dance. (Spell her name backwards).



I got home in time to rehearse with Windsong, Cleveland’s glorious women’s chorus which I’m lucky to be a part of. BTW, Windsong’s 30 Year Journey, Coming Into My Years concert is coming up on May 23rd, 4PM, The Church of the Covenant on Euclid for any Clevelanders who might want to come!  

HT and I even got a little walk in this afteroon while Seth was at the party, and Riley was indisposed with her DSi. We went two miles, all the while looping back around to check in on her. 

HT loves it when I take his picture as we walk.


Okay, love is a strong word.



But he does love me.



As I watched Seth in the water, getting hit with the waves, I thought life is kind of like that. You get hit in the face. You get tired. You bump up against other people. You might even have buckets dumped on your head, but the thrill of the ride is worth it.

There might be a lot of drama, but the highs! The highs are so good!

I’ve heard, on a spiritual level, that’s why we all agreed to be here.

For the thrill of the ride.

Girls On the Run Teaches Assertive Communication


Yesterday at Girls on the Run the lesson was about being assertive. We practiced using language to get our message across if someone is bothering us. Careful language, no blaming. No “you always…!” Or “you never!” No yelling. No ignoring ’til you lose your cool and explode. This is the template:    

I feel…

When you…


I would like for you to…

Every girl had several chances to practice out loud in the group, situations they deal with in real life, using the assertive lingo.

The following is one of Riley’s. I found it especially funny because she never qualified who she was referring to in the exercise. 

I feel annoyed

When you pretend I’m a horse

Because it’s painful

I would like for you to get off me

Later at home, she repeated the exercise with Seth, who duly noted her assertions.

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.