Today is my friend Cindy’s birthday, so I’ve got Cindy on the brain. She’s one of those friends you can go months without seeing and pick up right where you left off. She’s one of those friends who really enjoys her life and you feel uplifted being in her presence. You walk away from a coffee date on cloud nine, feeling smarter and prettier and cooler than you did before.

She’s creative and funny and her heart is humongous.

She’s beautiful.

She is responsible for the cat fiasco experience of 2008.

She’s a very talented writer.

She can be irreverent and wry. She’s a big flirt.

She’s a great mom.

She has the wonderful gift of equanimity, and is able to see situations from all angles. If needed, she can hold up a mirror to my self-righteous perch, but in a way that doesn’t hurt too much. 

She’s the kind of friend you want.

Can’t say enough about Ms. Cindy Washabaugh.

Happy Birthday, you!

Daughter of the Drunk at the Bar Goes on Vacation?


My friend Betsy went to France and during her trip she read my book. She thoughtfully decided to leave it in the library of the boutique hotel she stayed at, knowing it would find its way to just the person who would benefit from reading its message.

What’s its message you ask? Its message is: kids in your life may be going through all kinds of struggles you don’t know about and they could really use some understanding and compassion. Its message is: don’t write off a kid, or think you know what’s inside of them, based on what might be happening in their family. Its message is: one seemingly small action on your part could change the trajectory of a child’s life forever. Its message is: be kind. There is a story you don’t know behind each person you meet. Its message is: kids are way more resilient than you think.

I like the idea of someone in France picking up Daughter of the Drunk at the Bar and finding a connection with a little girl doing her best to grow up under trying circumstances in upstate NY, U. S. of A.

I like it a lot.

I have this idea of following Betsy’s lead and asking you, if you are going on vacation, to leave a copy of Daughter of the Drunk at the Bar in the perfect place, for the perfect person to happen upon it. I like the idea of “Janie,” traveling the world.

If you’re in, I’ll send you a copy for free, (until I run out). I’d love it if you’d take a picture and send it to me, wherever the book lands.

Email me. Lifeorileyo @ gmail. com

Have a great vacation, and happy travels!

Just one of the many important things I’ve been doing while the kids are at camp

I’ve been fantacizing about cutting it all off and starting over. So I’m exploring different hair styles.

Here’s something fun.

Cosmopolitan’s virtual hairstyles.

This is Mary J. Blige me.

The hair of some other celebrity I don’t recognize…

When it changes your hair, it kind of morphs your face onto the person’s face. It’s weird.

I could go on all day.

But I won’t.

Riley, one day you’ll forgive your mother for many, many things, one of which will be putting Taylor Swift’s hair on your head, (in the photo of that day we decorated our faces with eye liner), and putting it on my blog. I know you will.

It’s what I cling to.

Golden Ticket

Four days into summer day-camp, Seth’s tics started up again. The vocal and the whole body clenching. Has he been exposed to strep? Is he just wiped out tired from all the fun in the heat? Riley said a little girl at camp questioned him about it. “Why are you shaking?” she asked.

Riley said Seth blew off her question. He later went on to audition for the role of Charlie. The campers will be performing a Charlie and the Chocolate Factory play at the end of camp. He sang I’ve Got a Golden Ticket. I didn’t even know he knew the song. He’s only seen the movie once, during IVIG. Riley said he nailed it. She said he appeared fearless. And girlfriend wouldn’t lie.

We’ll find out if he gets the part on Monday.

He doesn’t tic when he sings.

So, Seth tics, and he just gets on with it. I watch, and go slightly into panic mode, worrying about long term effects, feeling responsible for fixing it. I so want to help this boy.

Yesterday in meditation, I was focused on Seth and suddenly felt a universal connection with all mothers who watch their children suffer. I was the mother in the third world country with not enough food to eat. I was the mother whose baby was born with a birth defect. I was the mother whose child was killed in war. I was all mothers.

I am not unique. We all want our kids to be okay.

It isn’t enough to pray for Seth. I must hold space for all mothers. All children. All suffering.

Maybe I can’t fix it, but I can love. I can send love. I can love your child as much as my own. I can understand that my suffering is not more important than yours. I am not able to do this consistently yet. I am selfish.

But every moment I touch upon it, I am healed.

That is the power of my boy.

Hammock Weather

The weather today is perfect. If I were going to be all, “God…I’d like to order the perfect weather, and this is what I want,” it’d be today. Sunny. Breezy. 80 degrees. It’s the kind of weather that wouldn’t cause you to break a sweat unless you are doing physical labor. Blue sky with puffy white clouds floating slow. It’s reading weather. Reading in a hammock. Then falling asleep. And when you wake up you read a little more. Then maybe have a snack, and then read again. The sound is the occasional rustle of leaves when the breeze hits the trees just right. That and the neighbor’s koi pond. 

I’ve spent most of today cleaning and cooking. Changing bedding. Went to the Farmer’s Market this morning for produce and eggs and meat, and went to Target where I splurged on new sheets. And of course you have to wash them. And what’s the point of putting new sheets on the bed, if you have have not cleaned under the bed? So I vacuumed under the beds, and dusted the dressers too. Because what’s the point of vacuuming if you havn’t dusted first? But I did sneak out to the deck with my Kindle for a break.

I’m reading Ernest Hemingway on Writing. It’s bits and pieces he said on the subject of writing,  in letters and interviews, all compiled into a book.

One thing he said was, “Remember to get the weather in your god damned book.”

That’s why I thought to mention it.

I’ve got to get me a hammock.


Yesterday, I bumped into a friend who suggested we get together for lunch while the kids are at camp. I adore this friend and would love to see her, but in my body it felt like she was asking to put a pillow over my face in an effort to kill me.

Today is the fourth day of camp. The first day I had appointments. The second day was chock full of things I wanted to do. Coffee with friends. Yoga. Writing group. Library for adult, not kid books.

The third day was full of phone conversations and errands. Little bits of writing but not enough. By afternoon when this sweet friend suggested we get together for lunch, I started to twitch.

It is time to write. I don’t want to have lunch. I don’t want to talk on the phone. I don’t want to do anything but write (I do want to have wine at porch night, but that is after writing).

After dropping the children off this morning, I pulled into our driveway. A neighbor friend was out front with a cup of tea, surveying her garden. I waved politely then looked to the ground, making a bee line into the house thinking, “Don’t talk to me, please don’t talk to me.”

It wasn’t ’til I sat down and began to type that I realized I’d not been breathing. Breathing and writing. One in the same.

Fingers flying I was filled with relief.

I’d written 1697 words before noon.

“…..hard, but not impossible.”

Getting ready for camp just now, Riley went into the bathroom to wash her face. The tube of face wash was really low. I’d just had a hard time getting any out when I washed my own face.

I stepped into the bathroom as she was trying to force some out.

“Riley, that tube is pretty empty, it’s kind of hard to get out,” I said, attempting to intervene and avert a huge frustrating scene for her. This is the kind of thing that can derail her. This is the kind of thing that makes parenting exhausting for me at times. Always having to be one step ahead.

She didn’t hand me the tube. She continued squeezing and said, “It’s hard, but not impossible.”

This is new.

I came downstairs and told Todd, and he looked at me incredulously.

“Who is this kid?” he asked.

The fact that she said, “It’s hard, but not impossible,” proves nothing is impossible.

The Call

Today is the first day of summer camp for the kids. I had an appointment for an educational evaluation for Riley, so Todd dropped them off. He said our girl bopped right in, introduced herself to new counselors, greeted ones she knew  like they were old friends, initiated conversation, and was 100% bubbly tween adorable.

Walking in the house from my appointment he tells me all this, and we sit at the kitchen table, chit-chatting happily about the morning.

Todd goes up to take a shower (he works evening today) and the phone rings. Caller ID says it’s the camp.

The wind is sucked out of my sails. Son of a bitch.

Todd sees it on the caller ID on the phone upstairs. He runs downstairs to listen in as I answer the phone.

“We got too cocky,” is what he said he was thinking.

It’s the camp’s administrative office. They overcharged us by $94.00 and would it be okay if they wrote us a check, because they delete the credit card info after transactions occur and no longer have it on file to credit our account.

The lady on the line has no idea the heart attack she has just induced.

Yes, please, send us $94.00.

That would be great.

I hang up.

We meet each others eyes and release our breath.

The Father of My Children

You, pressed up against my back, we’re spoons.

You breathe in and out, and it’s easier to focus on your breath than my own. I use it to go into the gap.

Napping in the afternoon on a Saturday.

You worked at 6AM and will be lost to us this evening if you don’t rest now.

This morning at 5:00, I came into the bathroom where you shaved, anxiety pressing down on my chest.

Doubts about my own goodness. That’s what it boiled down to. I spin, too empathetic, too worried. I can’t help everyone, can’t do it perfectly, can’t fix it all. I haven’t slept.

Shaving cream still in bits on your face, you take me in your arms and whisper “You are good.” You kiss the top of my head and say no one will ever be more loved than me.

I feel guilt and comfort and relief.

I never meant to need you this way.

After you leave. I do the work.  I write and write until I remember it’s not my job to fix a hurting world. I write until I remember to trust the wisdom of other souls.

When you get home, we put the kids in front of the TV and go into the bedroom. You need a nap. One hand holds my book, the other absent-mindedly strokes your arm as you fall asleep. Our window-unit blows cold air full blast. Finishing my chapter I close the book and snuggle into you.

It’s here I dive into your breath. Right now, I am here in your arms. Our children are downstairs, healthy.

A recent family conversation surfaces in my mind.

Riley asked, “How old was I when I lost my autism? Ten? Eleven?”

We were both taken aback and thrilled and charmed, though we played cool as cucumbers. She no longer identifies herself as on the spectrum. Imagine that?

In the next turn of conversation, Seth shared that when he sees someone hurting, he feels it physically in his body.

Me too, baby. We’re the same.

You’re breathing, and I look at our freshly painted bedroom walls and remember when I slept in a basement. There was pink insulation for walls and I nailed sheets to the two-by-four beams for privacy. The floor was cold concrete.

I close my eyes and focus on your breath, disappearing into it.

Believing in you, believing in us, believing I truly have everything.

What is Happening?

A little boy, one we don’t know, swam over to Riley as she was sitting on the edge of the pool, tentatively easing her way into the water. He was about ten. As he approached her he asked, with a glint of mean in his eye, “Do you want to have a water fight?”

She replied sweetly, “No thank you,” and as she said it I noted him drawing his hand back ready to just knock her flat with a big wave. At long last she finally took her feet off the bottom of the pool this week. Something like this could really set her back. I stood up behind her and gave him “the look” which made him instantly back off and slink away. Seriously, you do not want to be on the receiving end of my “look.” It’ll blow your hair back. Riley missed the whole exchange.

A chubby little girl we’d never met before, we’ll call her Emmie, she wanted to hang out with us. There is always one. A lonely neglected clinger-on. She hinted about how hungry she was and how badly she wanted something from the concession stand. My kids are secondary to kids like this. What they want is attention from me. They are starving for it.

Seth jumped in and immediately joined a dozen kids playing Marco polo. Easy, peasy.

Riley was mad when treading water didn’t come easily. Just because she does something once, doesn’t mean she can do it the next time. But she did eventually get those feet off the bottom of the pool again. And she put her head under water a few times, without plugging her nose. This is a huge victory. I spent a lot of time gliding her through the water, helping her get the feeling of swimming. Another boy about ten years old swam up to us and asked incredulously,

“Can’t she swim?”

I told him, “She’s learning. She’s getting there,” and then moved away from him as quickly as I could, hoping Riley wouldn’t ask to get out of the pool due to embarrassment. Thankfully, she didn’t.

I watched as the mean boy who had first approached Riley slinked up to a kid who was resting, hanging on the edge of the pool. For no reason, he full on body slammed him from behind. When the kid turned around to confront him the mean boy immediately said, “Ooops! Are you okay?” His feigning of concern disarmed the other boy and he let it go. Total manipulation. No parents in sight for either of them.

Another boy about twelve was in charge of three toddlers. And I have to say he was doing an awesome job. He took each one into the pool while the other two sat in a chair. He glided them through the water like I did my girl. They really trusted him. He fed them lunch, and then at one point commanded them to stay in the chair, while he jumped in the water and spent a brief moment of play with his friends. Where was his mother? Whose babies were these? Why was this boy thrust into this role?

There were at least three other kids with autism there, at that hour, that day. Any pool America. And those are just the ones that were easily detectable. Toe walking, hand flapping, etc.

A little girl, about five walked in front of my chair as I was packing up to leave. My kids stood shivering in towels, ready to go. This little girl had the braids Riley has coveted since we moved to our very diverse neighborhood. She had the whole head bob going on, lots of sass, and as she passed in front of me she said to her friend, in a voice that was obviously picked up from a much older relative,

“Girl, what is happening in this world?” She shook her head solemnly which was adorable for a five year old and said again,

“What is happening?”

Thinking about the events of the day, my eyes came to rest on a little boy standing in the pool shaking his head back and forth, back and forth, stim, stim, stimming.

I have to admit, I was wondering the same thing.

Look at her go!

It’s been a big week for Riley.

Over the weekend she had four girls sleep over. It went off without a hitch. Total success. Yesterday, our second day at the public pool this season, she took both feet off the bottom of the pool, and was able to tread water. No floats. No life jacket. No support. No panic. I’m not saying she can swim, be she was able to tread water for the first time in her life. She’s on her way!

And today at the park, she climbed to the very top of the play structure that has been one of the biggest nightmares for her. It was the first time she ever made it anywhere near the top.

She talked to herself the whole time. “I can do this. I can do this.”

What’s next? Riding a bike?

She’s worked so hard to be where she is today. We take nothing for granted. It’s been heartbreaking at times watching my baby struggle, but nothing beats the feeling I get watching her fly.

Helicopter Mom

It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing the Specific Carb Diet consumes a lot of my life. We are eating really, really well. The kids are on board, Riley especially loves every single bit of anything I offer her to eat. Seth is less enthusiastic, but he is supportive and does not complain. After all, his health is the impetus for doing this, and he wants his PANDAS gone. His tics are a lot better. Not gone, but almost undetectable to anyone who doesn’t know him. Right now it’s a very soft, vocal throat clearing and that’s it. No body movements. He has a hard time getting his words out. It’s not a stutter over individual words, it’s a whole sentence stutter. Especially when he is excited to say something, it takes a long time to get a sentence out of his mouth. But, it was only a few months ago that his ribs and jaw ached from the constant clenching so he’s obviously doing much better.

We stopped his IVIG after a six month trial. He definitely did not get sick as much while he was getting it, but it was just a band-aid, not getting to the bottom of why his immune system is compromised and not actually healing it, which is the real goal here. He had two bad reactions, and it was traumatic for him and the whole IV thing is so invasive. It was worth a try. I have been spending every waking moment researching a new therapy that shows promise though I am hesitant to even mention it here because it is the cause for huge fights between the “bio-med” world and the “ND” world and I have been there, done that, and don’t need all the fury blasted my way.

I don’t fit neatly into either group. For the uninitiated, “Bio-med” people treat their kids medically and try to cure autism and tend to see it as a tragedy. The so called “ND” (neuro-diverse) people believe autism is just a different way of being and we should not attempt to “cure” it.

I believe the autism epidemic and the increase in other related auto-immune disorders are a result of a genetic pre-disposition, and environmental triggers with an overzealous vaccine schedule being a big player(though not the only player, for example our food supply is sick). We’re now up to one in 55 boys in the U.S. DID YOU GET THAT? (And if you are adamant that vaccines have nothing to do with it, I assume you have read very little on the subject, and that what you have read has been spoon fed to you by agencies that are bought and paid for by the pharmaceutical industry. A short list will be added to the end of this post so you can do more homework and be more informed if you choose to be). I believe that when kids with autism act out, it is because they are physically and emotionally hurting. I believe their behavior is trying to tell us something and is a call for help. I believe working on behavior without addressing the underlying reasons for the behavior is cruel. I tried my best to do my little part to educate people on this when Riley was little, and mostly people don’t want to hear it. I tired of bashing my head against the wall and stopped trying to convince anyone of anything. Rattling the cage was getting me nowhere and taking away from my ability to actually be present with my children. I am quite a sensitive person myself, and my constant anger was negatively affecting my health. I feared there would be nothing left of me to care for my kids if I didn’t back off. There is a new website called The Thinking Mom’s Revolution which has taken up the cause if you are interested in reading more from bio-med moms in the trenches. These women are full of heart.

While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts.

She did send me into panic attacks early on with her near constant screaming…which led us to seek out bio-med therapies to try to help her. You know that parable about the people on the roof in the flood and they keep refusing help because they are waiting for God to save them? They send away boats and helicopters etc., and they wind up drowning and after death ask God, “Why didn’t you help me?” and God’s all…. I sent you the ‘effing boat, and the helicopter,etc.. That’s right, my God can sling it like a sailor(we all make God in our own image). And She’s sent a lot of help which we’ve gratefully accepted. We’ve done a ton of bio-med therapies. Most have been helpful. Some miraculously so (Berard Auditory Training, methyl B12 injections).

When she was at her worst, I used to sit in Riley’s room at night, on a rocker, meditating as she slept, envisioning her in white light, calling all angels, “Help my child. Help her.” I would alternate between beseeching, and visualizing her well. I would talk to her soul-to-soul, “Riley, haven’t we had enough of this yet?”

And I heard, “We are healing together.” I had the distinct feeling she was holding out for me. She was transforming me. She was teaching me unconditional love. She was teaching me that people act out when they hurt. That goes for little bitties with autism. That goes for alcoholic parents. That goes for everyone. She was cracking open my heart.

Hearts are being cracked open all over the place at alarming rates, and it hurts. Transformation can be brutal.

I am not the same as I was before autism hit our family. It has been painful. And it has been a gift. AND, I will continue to do what I can to heal my children, and heal myself.

‘Cause when God sends a helicopter? You don’t have to ask me twice. I’m grabbing my family and hopping on.

Resources for you if you are interested in being more informed:  

*MMR Ruling/Daily Mail

*Evidence of Harm, David Kirby

*Healing the New Childhood Epidemics, Kenneth Bock






*What Your Doctor May Not Tell You About Children’s Vaccinations

*Vaccine Epidemic


* Hannah Poling Case/CBS News





Swim With a Stud-Muffin

Living from the Heart is offering an amazing dolphin retreat in Sept.










This is Seth with Amizcle, (Uh-MEEZ-clay) the enormous 600 lb playful loving dolphin stud-muffin (he’s got like 18 kids). He is the guy we spent most of our time with when we made the trip to Mexico in November.

If you have a child with special needs, they will be 100% accommodated and no one bats an eye at any behaviors. If you have only typicals, they will have a blast. All are welcome.

If you’ve always wanted to go to Mexico, or swim with the dolphins this is a great opportunity for a family vacation with lodging and most meals covered in the cost.

$1,888.50 for a family of four.

If a retreat is not in the cards for you this year, perhaps enjoy living vicariously by reading Macy’s blog and watching the videos of the dolphins on her site. It is so relaxing to do so. File Cozumel in your dreams and perhaps one day, maybe sooner than you think, you’ll be experiencing Amizcle’s magic for yourself. You never know.










I’ll never get over Riley riding a dolphin across that pool. She started showering on her own after we got home from the trip. No longer afraid to get her face wet. No longer afraid to let go of me in the water. I know I probably already blogged this but I am still in awe and will never take it for granted. She’s upstairs in the shower right now as I type this. Last year I had to stand there the whole time. Rinse her hair for her. Listen to her cry over it. Flinching the whole time. Now she does it herself. To me, this is a miracle. This is a load off. This is a step toward living independently one day. I really adore Macy who runs the program and can’t say enough good about it. So pardon me if I repeat myself like an old grandmother who doesn’t remember what she told you yesterday(I truly often don’t remember what I wrote yesterday). Indulge me, while I sit here typing, drinking my tea, not rinsing my child’s hair.










I really hope to tell as many people as possible about Living from the Heart.

Did I mention since we got back, when I tuck Seth in at night I pretend to give him sonar? I put my lips to his forehead and make dolphin sonar noises. He pretends to only tolerate it, but secretly he loves it. I know he does.

The Divine Ms. R.

I’ve mentioned Riley’s lack of false modesty here before. If you give her a compliment, her usual response is to agree with you.

You: “You are so cute!”

Her: “I know.” (We’ve worked on a simple thank you being a nice response).


You: “Your hair looks so cool!”

Her: “I have to admit, it does.”

If you didn’t know her, it might sound like conceit but it really isn’t.

She does not think she is better than anyone else. She thinks everyone is as fabulous as she is. Someone could be butt ugly, and she would not notice it and would find something to praise in them. Someone could act like a total jackass, and she would defend them with, “It’s not their fault.” She knows people act out when they are hurting.

What if every compliment given were accepted? What if we didn’t deflect them? What if we all gave people the benefit of the doubt?

What if we all loved ourselves so much, we could hold only love and appreciation and compassion for others, and nothing else?

My baby turned 12 yesterday. And she is beautiful. Just ask her.

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