Friday, July 31, 2009

Charlie's House

Every time I see a national disaster my heart immediately goes out to the families of children with autism involved. Kids with autism need order. They need sameness. They can flip out if their favorite cup isn't clean. Imagine what happens inside of them if their home is suddenly destroyed? It is crises ramped up 100 notches for these families.

Unfortunately this is exactly what is happening to a friend of this blog.

Many of you are probably familiar with Jeanne of Charlie in Wonderland. Yesterday her home was devastated by a tornado. They got out with Charlie's supplements, his robots and his Legos, and that is about it.

Jeanne is an incredible bio-med mom whose child has made tremendous progress since his regression into autism. She has dedicated her life to helping Charlie, and many other families through her relentless advocacy.

Charlie's family will be living with relatives for months until their home can be rebuilt. Tori Duncan at Lend 4 Health has set up a special "Chip In" to help this good family get back on its feet.

My heart goes out to Charlie tonight and to everyone who loves him. Sleep well little man. People care.
~
*Image from Jeanne's blog.

Razor Giveth,Razor Taketh Away

Riley has begun riding a razor scooter. She is very tentative. Very careful. It is all push, push, pushing as she lacks the balance to hop on and glide, but she is trying. She is really trying. Seth's been riding his razor for a year now, and he's a whiz, but Riley, uncharacteristically, is letting that little fact slide. She's persevering!

The other night she wiped out and cut her knee. I'd been out front weeding, and I saw her sitting on the sidewalk half way down the street, but she wasn't screaming and crying so I didn't know she had fallen. Finally, Seth zipped up to me on his scooter and said, "She's hurt!" I walked down to see what was up.

"Riley are you okay?"

All the color had drained from her face, "It's just...I can't look at this blood," she squeaked.

There was a bright red trickle at her knee, slowly making a trail down her shin. We made our way back to the house, her hobbling, me holding her hand, and steering the scooter with my other one. Seth whizzed on by, threw his scooter in the front yard and raced into the house.

I sat her on the front steps and ran in to get a washcloth and the Littlest Pet Shop band aids the very thoughtful Darby had sent recently. Seth was fiddling at the dining room table with something or other.

Back outside she flinched as I washed the dirt off her knee. She flinched as I put the band-aids in place. Just then a little paper airplane made its way over Riley's head and landed at her feet. Seth had made it, and on it he'd drawn a sad, crying face, and then a happy one. Another plane shot by. On this one was a rough sketch of a "cut" and on the other side, a "cut that was healed." This is the sad to happy one.
He was trying to help her visualize.He's so little he can't quite get the concept of not attaching the smile to the eyes, but he "gets" the concept of visualization.

Next, he ran back in the house and came out with a glass of cold water for her. She declined. He stood there, concerned.

He looked at the glass, the cold water fogging it up in the outside heat, and asked her.

"Then do you mind if I drink it?"

She said, no, she didn't mind.

He drank, took one more spin on his scooter, and then the three of us went inside for the evening.

Thursday, July 30, 2009

Food for Thought

As some of you know, a few years back we did the specific carb diet. It is wheat free/sugar free and we did it dairy free as well. We were looking for behavioral changes in Riley, hoping to alleviate her tummy issues and also help her anxiety. We did it for 18 months, strict. Not a morsel went into a mouth of this family that I didn't prepare from scratch. Surrendering to my kitchen was a spiritual experience for me.

We didn't notice any profound changes, but Riley continued to progress at a steady rate. We were always doing so many interventions at once, it was hard to tell what exactly was helping. It was probably all synergistic.

But after 18 months, with no hit you over the head, WOW! type of improvement, I got tired. It felt so restrictive to live that way if you didn't have to.

We slowly added foods back, one at a time, and saw no problems in doing so. We still eat cleaner than most American families. We buy organic. No preservatives. No partially hydrogenated anything. As few chemicals as possible. But I do let them have what they want at festivals, parties, etc. That my kids were eight and six before they ever got a Happy Meal at McDonalds is one of my sources of pride.

But Todd recently had a health issue and eliminating wheat has helped him. And Seth is having all sorts of auto-immune trouble. And so maybe bringing back more consciousness to what we are eating is in order. We have sorta gotten out of whack. I hardly cook anymore. Annie's mac and cheese and organic hot dogs and chicken nuggets have become the the order of the day.

And then I stumbled upon this post. And I'm thinking, yes, I'm onto something. Hang on Seth. We've got you buddy.


*The blog above has actually moved to Wordpress, if you want to see further posts by the same authors click here.

Wednesday, July 29, 2009

Everyone is doing it!

Jess is doing it.

Kyra is doing it.

Carrie is doing it.

Today I'm even doing it!

Come be "Hopeful" with me, won't you? Grab your coffee. I'll meet you there.

Tuesday, July 28, 2009

Better Now

Took some time to change focus.


-With contrast comes expansion.

-Seth is joyful!

-Mom knows how to step out of problem space to find solution space.

-Seth wants perfect health.

-We have financial means to help him.

-The larger part of Seth is already well. Most of his cells are working just fine. He eats, breathes, grows.

-Seth is pure love.

-Seth is an uplifter, a teacher.

-Seth's family adores him.

-God adores Seth.

-Things have a way of working out.

-The power that created Seth remains in Seth.

I'm a bit preoccupied...


Seth got strep two weeks ago and once again his body is wracked with neurological tics. His head is shaking, his arm is doing an involuntary hammer fist type of motion. His leg shakes. And of course his vocal tic is loud and often. I was waiting the whole time at Mary Poppins Saturday for someone to turn around and say something. He got a couple of "looks" but no one came right out and said anything to us. People think it's voluntary. They think he's being obnoxious. During the show I sat there wondering if they had any special seating for people with neurological issues. Should those with Tourette's or something similar be banned from the theater? People pay good money for their tickets. Shouldn't they be allowed to watch the show without being distracted by the "glunk, glunk, glunk" of a little boy sitting behind them?

No answers here.

We've got some major decisions to make regarding Seth's health. Blood tests have determined he is IgG deficient. He doesn't make antibodies to fight infections. This is why he missed 25 days of school last year. This is why he was covered in viral molluscum a couple of years back. I did a geriatric rotation in nursing school and he looks like a Parkinson's patient. What the hell is happening to the myelin in his brain? Some doctors call it PANDAS. Some doctors don't believe in PANDAS. Isn't that funny? To have that option? "I don't believe in it." So there.

-Do we put him on long term prophylactic antibiotics to prevent future strep occurrences? But...if his immune system is so weak, and he is susceptible to infections, do we want him to build up antibiotic resistance?

-Do we start a long and extremely expensive process of IVIG, which is a blood product and therefore always risky?

-There are a couple of new supplements to try. Enhansa is what we are going with first. It is anti-viral, anti-fungal. It might give his immune system a boost and allow him to fight off infection better. Tastes like hell and will be hard to get into him.

-Do I go back to a restrictive diet? Cut out wheat again? Cut out all sugar again? We did this for 18 months. We were looking for behavioral changes in Riley. Didn't see those, but we were all pretty healthy during that time.

Trying to keep my head on straight.

Seth is okay. He's at day camp, having fun, despite the tics. Right this minute, right this second, we are all okay.

Stay in the moment.

Breathe.

We'll figure it out.

Monday, July 27, 2009

Touche'

Riley has been having a hard time learning her latest form in martial arts. So I took the camcorder, with the intention of asking the teacher to go slow so she could practice at a home while watching the tape.

Prior to class, I was testing the video recorder in the hall. It didn't work last time I tried this, the battery was not right, but anyway, I started recording the kids, interviewing them, making sure we were all set.

I asked Seth some questions. He zoomed in and out like Letterman, extreme close up, backing up, back to the camera again. He is such a goof. Then I grilled Riley for a bit. What's it like to be nine? Why do you like cats so much? Where'd you get that dimple? As I was wrapping it up I asked her, jokingly, "How much do you love your mother?"

She looked into the camera, paused and said,

"More than you love yourself."

Sunday, July 26, 2009

Nowhere Near "Practically Perfect"

Cleveland has a wonderful theater district, and we went to see Mary Poppins yesterday. The show was great. Riley and Seth were mesmerized. Three years ago Riley could not handle a middle school production of The Pirates of Penzance. Today she was fine with the special effects. The loud applause. I was positively giddy with how far we'd come. The play was fantastic. The crowd gave a standing ovation (for a matinee)!

The theaters are quite ancient here, and the exit plans are not the best. Traffic becomes very congested in the huge lobby as people file out. I've found this out myself on several occasions, so thought it best if we remained in our seats until the place cleared out a bit. I wanted to save Riley the jostling and sensory overwhelm of the masses.

She went nuts.

She assumed all of the people leaving were pointing at her, making big imaginary L's on their foreheads, knowing she has Asperger's, knowing she can't handle crowds, thinking she's "a baby." At this point the crowd was thick, the lobby would be sardines by now, and she was already upset. We continued to sit. We tried to talk her through it, but she just wailed louder and louder. Seth sat in his seat, nonchalant. Todd and I kept speaking softly to her, reassuring her, and then, I lost it.

The plummet from so high, to so low was too much for me. 999 times out of 1000 I can handle whatever she throws my way, but not this day. I was done.

"Riley. We have had such a good day. No one knows or cares why we are sitting here. If you are embarrassed, you are the only one drawing attention to yourself." I felt my blood start to boil. I was so sick of this. "This is such a stupid thing to be upset about," I snarled through gritted teeth.

Instantly, I hated myself for chastising her. Who is to say what is valid to be worried or upset about? I do not live in her body. I'd throttle someone else if they said that to her. And then I just stopped talking and felt my throat tighten. I willed myself to knock it off and get it together, but I felt the tears welling up. All the old familiar, I hate my life, I hate this, I'm so sick of this, why, why, why can't we ever just have fun feelings came bubbling up to the surface. Biting my lip, I tried my best to hide my face from the kids. I dabbed at my eyes quick with a greasy napkin Seth had used for his pretzel.

Todd looked at me confused. I routinely diffuse much tougher Riley moments, with one hand tied behind my back. His concerned expression begged the question, "Tears? For this?"

Finally we got going.

In the lobby it was still packed and Riley, a bit calmer now, reflexively reached for my hand. I honestly didn't feel like taking hers. Todd and Seth were in front of us. I wished we could trade kids but it would be too obvious. As we slowly made our way through the people she looked up at me, and asked,

"Are you okay?"

Looking straight forward, I nodded.

We walked a hundred more paces through the crowd and she asked,

"Are you sure you're okay? You look sad," she said sheepishly.

I nodded again, not willing to talk about it right then in the throng of people. Later, I would marvel that she noticed my emotion, showed concern, and asked about it twice! She never considers the effect her meltdowns might have on anyone else. At the moment however, I just felt mad. I held tight to her hand. I'd save her from the crushing mob if need be, but I didn't have to look at her.

And you know? Eight hours later I can see it more clearly. I thought we'd come so far, and then her meltdown at the theater felt like it was all a joke. Maybe she really hasn't come very far at all? Maybe I haven't either.

But now I see it for what it was. A mom getting angry at her kid. Like most moms are allowed to.
You do know parents of kids on the spectrum don't feel allowed to get angry at their kids,right? Because their kids can't help it? Plus, there is so much residual guilt from the times I lost my temper before I knew what was going on with her when she was a toddler.
Maybe I can let myself get mad at her because she now does have the capacity to understand she has an effect on others. She does have some control.

My intentions in deciding to stay in our seats were only to help her. I'm not proud of what I said to Riley, but maybe, just maybe, it doesn't have to mean we're not making progress.

Or maybe I'm just full of crap.

Mary Poppins, you might be "Practically Perfect," but I'm not.

Saturday, July 25, 2009

Widget, Widget, Widget

Did you all see my new little counter, over there on the right? Down a little? It tells us exactly how long, to the second, 'til we start in our training class at 4 Paws for Ability in October.

Heather's sweet son Noah (they are from SC)will be getting a dog and they will be in our class. She let me use her widget for the counter.

Thanks so much Heather!

P.S. The fashionista dog in the upper left picture is Piper, a dog in residence at 4 Paws but the other three are possible matches for Riley, (along with about 100 others).

P.S.S. Special thanks to my technical guy HT for installing the widget.

P.S.S.S. I like to say, "widget."

Friday, July 24, 2009

They had no plans to go anywhere when I went upstairs.


I interrupt the hard hitting blowfish post below, to announce there is nothing more beautiful than when your son is at camp, and your husband has the day off, and you are holed up in your office writing, and you come downstairs to rinse your coffee cup and find a note on the kitchen table that says,

"We went to The Botanical Gardens."

Riley's summer camp was near The Botanical Gardens, and we've gone a lot this summer, but Todd had yet to go. I bet he let her pick what they would do today. I bet she wanted to show him everything there. I bet it wasn't his first choice on how to spend his day off. I bet there are a hundred other things he feels he needs to get done.

I bet he looked into her big eyes and said,"To hell with it all, my baby wants to share something with me."

And so off they went.

I bet she'll remember it forever.
~

Autism Community Store

Looking for some cheap toys to satisfy your child's sensory needs? Check out Autism Community Store. They have great specials on all kinds of autism related things including nutritional supplements. A godsend for anyone who doesn't live near a Whole Foods. Looking at these toys reminds me of the hours and hours, and hours Riley put in at occupational therapy when she was tiny. No one works harder than my girl.
~
If you'll excuse me, I'm going to go buy her a blow fish.

Love.

Thursday, July 23, 2009

Take Your Shirt Off and Cry

A couple of years back I was at a writing salon in New York City and struck up a conversation with writer Nancy Balbirer. She was working on a book about her years trying to make it as an actor in NY and LA. I "ran into her" on shewrites.com, a new social networking site for women writers and found out the book she'd been working on had been published. She agreed to an interview for this blog, for which I am grateful and will forever think she's the coolest.

1) When/how did you decide to write your book?

I had been circling the questions posed by Beverly D’Angelo’s Former Manager (one of the people in the book, as well as the title of the second to last chapter…) for years: Why Aren’t You Successful? It was something that, at the time, I took as an affront: this guy, whom I did not know, but who nonetheless asked me to a meeting, ostensibly to discuss his representing me, was implying that, basically, I was a loser. I couldn’t escape the question and how pissed off I was about it. And THEN, I was literally haunted by Beverly D’Angelo’s Former Manager: he’d appear in dreams, when I was running on the treadmill, etc. and I knew it meant something beyond what my ego was so attached to. Once I had my daughter, a few years later when I was living back in New York, I started thinking about him again—chiefly, because I was thinking about my life pre-baby; who I was before and who I had become, and all the stories I would one day tell her. I knew how the stories ended, and what they were about, etc, except for the one about Beverly D’Angelo’s Former Manager, because I still had no answer for the question. And, that’s when I started to think that the question itself was perhaps far more important the answer. And almost instantly, this question, which I had once considered so hideous and awful, morphed into a thing of great possibility. I had, theretofore been looking at my failed acting career as a closed door, and in that instant, I began to imagine that closed door, instead, as a portal to a whole new life. I wondered what would happen if I embraced the notion that I was, in fact, a failure, and rather than running from it, reveling in it. At first, I thought it would be another solo show (which is the form of writing that I knew then and the only writing I had done at that time, really…), but once I started writing I knew pretty much instantly it was a memoir.

2) I was reading Take Your Shirt Off and Cry, and at the same time reading another memoir called The Guru Looked Good (two timin' you I was, thinking they were vastly different stories), about a woman who spent years in the Eat Pray Love ashram in India. Half way through, it occurred to me both books were about the same thing. Searching for love and acceptance somewhere outside ourselves. Self doubt. The "am I worthy?" question. The universal question!

Do you feel like you've been able to answer that question for yourself yet? Has being a parent upped the ante?

Well, being a parent, you really have to come to terms with your own shit. You just do. And, I knew I wanted to face some painful truths about myself—my shame and various disappointments, my various heartbreaks, etc, and had wanted to for years, but hadn’t out of some kind of irrational fear that in doing so, I would fall apart or spontaneously combust or whatever. Having my daughter made me very brave, because it wasn’t just about me anymore. And, you are absolutely right: Take Your Shirt Off and Cry is primarily about coming to terms with how very much I was looking outside of self for approval, for love and self-worth.

3) Your book was often heartbreaking (your golden retrievers!) but also so funny. I laughed out loud over the Joan Collins bathroom scene, over the names you give characters "Beverley D'Angelo's Former Manager," and so on. You also write about some really famous people, (some by name) were you afraid of their reactions? Has there been any fallout from their camps?

I think any memoirist feels scared or freaked out by the prospect of writing about their life, because in sharing your story, you are sharing the stories of others’ as well. I haven’t thus far had any fallout or negative feedback from anyone in the book—famous or otherwise. And my friends who appear in the book have all read it and felt comfortable about how they were portrayed and the accuracy of my memories. One funny side note on this: in the title chapter, there is a part about how promiscuous we all were in drama school and to illustrate just how slutty we all were, I divulge that there was once an entire Hamlet cast who gave one another crabs. I didn’t actually remember who was in that cast specifically anymore; it was a huge cast and a million years ago, and I only remembered that tidbit and how the whole drama department snickered about it at the time. So one day, a couple of months ago, I was having drinks with a few old friends from school and one of them—who’d just read the book—gleefully exclaimed: “I WAS IN HAMLET!!! I WAS ONE OF THE CRAB PEOPLE!!!”
I just about fell off the barstool, let me tell you!

4) What I appreciate about the book is- it is YOUR story. Sure there are celebs in it, but it isn't a tell all. They are bit characters in your very interesting story. Was there a temptation to just spill it and air dirty laundry?

Never. It’s not interesting to me. “Tell-Alls” might be dishy and great fun and all that, but they don’t provide much in the way of insight. I’m interested in literary memoir: how a person can tell a story about a specific life experience and make it universal enough to resonate for other people. The backdrop of my book is show business, which I was in for a long time. It would be virtually impossible to be in that world and NOT come into contact with famous people. But, as you said, they were really bit players in this story and as “characters” they work to illustrate, by virtue of their fame, the disparity between someone like me, who’s on the other side of the fame-fence and someone who’s “made it”. Most memoirs written by actors are from the point of view of someone who is ridiculously successful. Take Your Shirt Off and Cry is from the point of view of someone who was not, and hopefully this is what makes it relatable to people in or out of “The Business.”

5) How did you get your literary agent? I love "how I got my agent" stories.
Also, how is the lit agent process different than the acting agent process?
How are acting and writing linked, and how are they different?

One of my friends is the writer Cintra Wilson and she was always encouraging of my work, which was such a huge compliment because she is just a total genius. Anyway, when I first started writing down the stories that ultimately became Take Your Shirt Off and Cry, I’d give them to her and also to my other writer friend, Mike Albo, another absolutely fabulous writer, and they’d give me notes. When I was done with 3 chapters and a detailed chapter list, Cintra recommended I send them to her agent, Bill Clegg. I did and he called me pretty much right away and within a week, with his help, I had written a proposal letter, and the following week after that, we were meeting with a bunch of editors. This experience, by the way, is VASTLY different than the one I had as an actor. I had a much, much tougher time as an actor—even getting a decent agent at times seemed impossible! It didn’t hurt that I was extremely lucky to have such great and talented friends, who believed in me and supported me the way Cintra and Mike have, and also fortunate that an outstanding agent like Bill “got me” and loved the book so much. I am eternally grateful!!

Funny that you should ask about the differences between acting and writing, because I just wrote a piece about this very thing for Slate’s Double X that you can read here:
http://www.doublex.com/blog/yourcomeback/i-used-act-private-public-now-i-act-public-private

6) Have you bought yourself a new pea coat?

Too funny—you know what? Lately I have been OBSESSED with getting a new one!! I really want that same one I had from J. Crew, but I’m gonna also look in some thrift stores…

7) What are you working on now? More books?

I am working on a new book—another memoir, this one about my complicated relationship with my father. It will have some commingling with the time period Take Your Shirt Off and Cry takes place in, but mostly it will be about the period before that and also after. I’m also working on an idea for a play and a novel, as well.

Click here to see Nancy read a hilarious excerpt from Take Your Shirt Off and Cry.

Tuesday, July 21, 2009

Love is...


Tonight at martial arts, Riley very politely asked to be excused. It is unlike her to leave class unless she's on the cusp of a meltdown, but my radar didn't go off. She didn't seem upset. Still, she ran out of the room. Perhaps she needed the bathroom? Before I could get up to check on her she was back and heading straight toward me.

"Mom," she whispered. "Where are the tissues?"

There was a box on a shelf right behind where I was sitting, so I reached back and handed her one. She took it and bowed back into class. All the students were lined up in a row. She went directly over to Seth, and wiped his nose.

84 Days and Counting

When you are getting a dog through 4 Paws 4 Ability, there is of course a Yahoo message group for all involved, and on it yesterday someone who has a seizure alert dog for their non-verbal child said the kid had been crying for days and they couldn't figure it out and then the dog started licking the kid's ear, and then it really went at it, not giving it a rest, and then you guessed it, the child had an ear infection. The dog let them know.

There are so many ((love bugs)) whose families are still fund raising for their dogs. Read some of their stories here.

These are the dogs in training. Scroll down and behold. One of them will be Riley's!

12 more weeks!

Bring on the cuteness.

Woof!

Sunday, July 19, 2009

Lullaby to Frank McCourt

It was the first evening of the Omega memoir writing workshop. After a lively panel discussion, in which Malachy McCourt had everyone in stitches, it was time to call it a night. The moderator was bringing the group to a close, bodies were shifting, people tucking their notebooks into their bags, when Malachy raised his hand and reached for the microphone. He had one more thing he wanted to say.

The room got quiet.

"Many of you know and love my brother Frankie's work. Well, about five months ago he got melanoma, and he's in hospice. He's dying."

Malachy choked on his words. Wiped a tear.

"He got meningitis, and they say he has only about a week," he paused. "He's lost his vision. He's lost his hearing. He can't walk. I just wanted you to know, in case I act strange while we're here. I just wanted you to know what's going on," he said in his thick Irish accent. He hung his head a little.

Time slowed down. The air in the room changed. Malachy somehow looked lit up, but not from a back light or overhead fixture. There is a silence reserved for sacred moments. Birth and death. Words are meaningless. It hung in the air for a beat, and then out of the silence, out of the light, Malachy began to sing,

Oh, the summertime is comin'
And the trees are sweetly bloomin'
And the wild mountain thyme
Grows around the bloomin' heather

Will ye go lassie, go?
And we'll all go together
To pluck wild mountain thyme
All around the blooming heather
Will ye go lassie, go?

And Malachy said, "Sing with me children."

He invited us into his pain. And some knew the words. And some learned them quickly, and each time he came to the chorus, more joined in.

Will ye go lassie, go?
And we'll all go together
To pluck wild mountain thyme
All around the bloomin' heather
Will ye go lassie, go?


"Sing with me children," he said

And we'll all go together
To pluck wild mountain thyme
All around the bloomin' heather


And we did sing.

Oh, the summertime is coming
And the trees are sweetly bloomin'
And the wild mountain thyme
Grows around the bloomin' heather
Will ye go lassie, go?


And we were helping. And we were blessed that night, to be singing a lullaby to Malachy's big brother Frankie, who meant so much to the world.



Saturday, July 18, 2009

A Few Images From Omega

This was the view as I walked up to the sanctuary for morning meditation.

This statue graced the entrance of the Ram Dass library on campus. I'm sure it has all kinds of symbolic meaning, but I just thought Riley and Seth would get a kick out of it.
And this, was the view from my hammock. Check out my tan lines.
~~~
"Our rational minds can never understand what has happened, but our hearts.. if we can keep them open to God, will find their own intuitive way."
-Ram Dass

Friday, July 17, 2009

A Hip, Hop, A Hippy to the Hop and You Don't Stop...

Seth is bouncing back nicely. His throat no longer hurts and he has some energy. The vocal tic is still quite pronounced but he's found a way to make it work for him. He and Riley have been playing dress-up all day, putting on skits. There has been a scene at a spa, a zoo, a library, a circus, and my favorite bar none has been the rap concert. Seth dragged my computer chair behind the piano bench, made a pseudo turn table, and pretended to spin records while he rapped.
~
"Mom! I think my tic is helping me rap!"
That's right, the "glunk" became part of the act.

"Boom-ticka-glunk-glunk, boom ticka-glunk."

"Ticka-ticka, pft,pft, glunk glunk glunk."

Play that funky music white boy.
So glad you are feeling better.

Thursday, July 16, 2009

Counting My Blessings

Seth missed 25 days of school last year due to illness. He has IgG defieciency which means his immune system is quite weak.

Tuesday he said his throat hurt. Today the tics started, full throttle. He looks like he has Parkinson's with the head nodding and hammer fisting, and "glunk, glunk, glunk" vocal tic. We got a positive strep result this morning. He was flat on his back all day.

So Riley spent the evening "making him feel better." She moved the mini trampoline in front of the couch where he'd been resting, and put on a little variety show. She jumped up and down and told him jokes. She did the chicken dance. She went over to the piano and played Michael Jackson's Bad. She read him excerpts from the latest stack of library books. She made a mustache out of paper and taped it to her face, then draped a purple blanket around herself and pretended to be a bull fighter. And, this one really gets me, she took his many Diggy Tick pages, and read him his own story, flipping each page as she went like an 80's INXS video.

He smiled for the first time all day.

Last night, Todd was working and I put Seth to bed on his mattress on the floor in Riley's room. He loves to sleep in there whenever we let him and his mattress was already in there from the night before. I was too tired to move it myself. Todd found him in the middle of the night lying on the bathroom floor. He'd been coughing and didn't want to wake up Riley. Or us.

He's six.

She's nine.

They certianly come with their challenges, but I could not ask for better kids.


Making My Way Toward Foxy

Since "autism" isn't covered by medical insurance, every year we set aside the maximum amount in a tax free flex spending account for medical expenses. This is the first year we've not spent it all and don't have imminent plans to do so. The account is use it or lose it. We were kicking around what we should do, and I said, kiddingly, "Maybe it's finally time for my Invisalign." I've been dreaming of Invisalign for years.

Todd cocked his head, and said, "We could do that if you want."

And that's how I found myself sitting in the orthodontist's chair yesterday, mouth open wide, getting little spokes glued to my teeth (for the retainers to snap onto). The spokes are a little freaky. A bit fang-ish when the retainers aren't in. They cut the inside of my mouth when I try to eat. You can only take out the retainers for eating. I've never had any type of orthodontia before. It's a whole new world. After my appointment, I took the kids for ice cream, but didn't get any for myself because I didn't have a toothbrush handy. You have to brush your teeth after eating and then pop it right back in. Perhaps I didn't think this through. Then again, perhaps I'll lose weight if I have to consider whether it's worth brushing my teeth every time I'm tempted to haphazardly pop food into my mouth throughout the day.

I came home and e-mailed Todd at work:

I look ridiculous and I talk funny!
I'm like Dracula with a lisp.
Will you still love me?

He e-mailed back,

I will ALWAYS love you.

Then another e-mail came through:

I will love you on a train.
I will love you on a plane.
I will love you in a car.
I will love you near or far.

He may be a plagiarist, but he so deserves the straight toothed skinny chick he'll be sleeping with this time next year.

Tuesday, July 14, 2009

Art Heals

Abigail Thomas is a writer you could just listen to for hours and hours. I had the privilege of getting to hear her read from her work Saturday evening at Omega. She goes right to the heart of things, ruthlessly revealing her own vulnerability, mistakes, joy and regret.

One of the pieces she read was about the night her daughter was hospitalized and in great danger of losing a pregnancy. In it, she described a moment of inertia, when she asks her son-in-law over the phone, "Should I come?"

He tells her yes. Adamantly.

Because he said yes, she was able to mobilize and go, and to be the mother she had always wanted to be. The mother who was there for her child and knew what to do when she needed her.

I'm the kind of mother who wouldn't need to ask. I'd like to see you try and stop me from coming, but Abigail made space in my heart for other kinds of mothers. Those like mine, who perhaps aren't indifferent, but don't know what to do. Those who question if they are wanted in the lives of their children. Those who are still unsure even after their kids are grown and having babies of their own.

My mother was not invited to help me get ready on my wedding day. She was not there for my miscarriage. She was not at the births of my children. She did not come when Todd had his emergency appendectomy and I was alone hauling two small kids to the hospital. She meekly asked if she should come, but I felt if she had to ask, she really didn't want to.

After being let down so many times by my parents, I don't ask for anything. I'm a fucking island.

But Abby (can I call you Abby? I feel so close after such an intimate evening)cracked open a little space in my heart around all this Saturday night when she read her piece.

Sometimes moms just don't know what to do. What a concept.

Imagine.

Monday, July 13, 2009

Quotes from the workshop....

"I don't know anything about grammar, and I don't give a shit. I sit down and I write."

-Malachy McCourt


"When I hear the words 'narrative arc' I reach for my revolver. I don't believe in it."

-Abigail Thomas


"Writing is art. Have you ever heard of a painter being edited?"

-Marta Szabo


"Platform. I hate that word. I don't even know what it means."

-Martha Frankel

Sunday, July 12, 2009

Back From Omega


The memoir festival was so good.

Upon my return,

Me: Well, it's official. I'm in love with Malachy McCourt.

HT: You're not going to leave me for him, are you?

Me: If he'll have me.

HT: Does he have money?

Me: Lots of it.

HT: Send me a check.

More tomorrow. I'm off to bed.
Nighty-night.

Friday, July 10, 2009

Off to Omega

I'm off this weekend to hang with Abigal Thomas and Malachy McCourt. Before you get too jealous, here are my accommodations(no this is not the outhouse, it's my cabin, but I'm assured there is a bathroom, nearby).
Love & writing,

MO'N

Thursday, July 09, 2009

Brave is being scared and getting through it anyway...

This might not be a beautiful sight to you, but to me it's gorgeous! Riley has been to the dentist exactly twice. The first time it was a bloodbath. I had to physically restrain her, as she screamed her head off during her cleaning. Seth was three and he cowered in the corner, crying, terrified. I could not help him.

She had another cleaning a year ago, and did not scream, but she held fast to the armrests of the chair, and whimpered the whole way through. Imagine the sensory bombardment?

Riley has a severe overbite. Ideally she should get orthodontia, but I'm not certain she can tolerate it sensory wise. Yesterday was our first trip to the orthodontist and the photo you see above required them putting plastic lip gripping utensils in her mouth to pull it wide open. She was pretty scared, and had a couple of moments, but the doctor was so warm, and patient and understanding. Riley is getting so much better at expressing herself. Instead of screaming her head off, she cried,

"Are you going to hurt me? Are you going to hurt me?"

Because she was able to ask him this, he was able to then reassure her. Non-verbal kids on the spectrum, I love you so much and my heart goes out to you and your parents.

The Dr. and I agree that orthodontia is not possible for Riley, emotionally speaking, for another couple of years. Until then, we'll keep visiting him, building trust, seeing what happens.

My girl got her x-rays and dealt with the plastic thing-a-ma-bobs. She is so brave.

Wednesday, July 08, 2009

C-I-T

Riley came home from camp today jazzed. She wants to be a counselor in training. She's going into fourth grade, and you can't be a C-I-T until you are in sixth grade, but she wants to be a C-I-T.

She wants to go to camp again next year, and the year after and eventually be a C-I-T.

Makes my throat well up all happy.

My girl.

American Wife


So Courtney gave me my latest reading assignment, and I took the bait. American Wife is loosely based on the life of Laura Bush and the author does a pretty good job explaining how someone like "Alice" (smart, reserved, quiet) could fall for someone like W., I mean, "Charlie." How the two come together to balance the parts of each other out. A vivid back story woven throughout also explains Alice's vulnerability, and thus susceptibility to the charms of "Charlie." I absolutely loved the "falling in love" moments in this book.

BTW, A little trick I did in my imagination while reading? For Charlie, I substituted "Big" on Sex and the City instead of imagining the real "W." Worked like a charm! This is important because there are a lot of sex scenes.

American Wife takes a peek inside the world of privilege and the sheer inability of some in those ranks to think of anyone outside of that world as important.

I found the main character, Alice, less likable as time went on. I'll tell you the exact point I turned on her. When she didn't hire a cleaning staff for her big mansion. THE HELL YOU DIDN'T ALICE! The hell you didn't. I'm sick of you and your goodie two shoes ways!

I'm sorry. Give me a minute.

So if I'm still thinking about it, and arguing with the characters days after I finished reading, that's a pretty good sign right? It was a great book.

American Wife? Even though Alice insisted on doing her own cleaning, you have my blessing.

Courtney, I'm ready for my next assignment.

Tuesday, July 07, 2009

My Camper

The "60's" are being celebrated at Riley's 1/2 day camp this week. Today she woke ready to go. She got out her tie die shirt. An anklet. A flower power bracelet. After breakfast she asked me to draw a peace sign on her cheek, which I did with eye-liner.

Driving there she seemed okay.

Walking toward the entrance, she balked.

"Everyone is going to laugh at me!" she cried.

Holding her hand, I talked/walked/dragged her toward her aide, Ms. M, who was already waiting to greet her outside.

When we got up to Ms. M. Riley did an interesting thing. She let go of my hand, and hid behind Ms. M., clinging to her for dear life, but clearly, planning to stay. There was no, "Mommy take me home!"

It was more, I'm nervous and I know who will help me through it.

Riley told us she was afraid no one else had dressed up. She'd be the only one. It would be "so embarrassing!"

We tried to encourage her.

Ms. M. said, "You start the trend Riley. You don't need to be a follower."

I reminded her how many times she has successfully gotten through situations that scare her, how brave she is. How darling she looks.

Then, Ms. M. said, "Should we go to the art room and paint a peace sign on my face too?"

Riley smiled and nodded.

Three hours later, I drove up and she bounced out of the building happy.

This is her first camp experience. There are only three more days.

"Next year I want to be a full day camper," she says.

Monday, July 06, 2009

If There Were No God, Would There Still Be God?

D., the whirling dervish circled around and around and then stopped at our blanket. It was July 4th and way past their bedtime. Seth was tired and snuggled in my lap. Riley was at my side, leaning into my shoulder and we'd wrapped a big blanket around the three of us. HT had to work(though we would call him when it started so he could hear the kids' ooos and ahhhs).

Seth's buddy from kindergarten is evidently the type that becomes ramped up when he is over tired. Their family had inadvertently plopped down near us to watch the fireworks and I'd been enjoying a conversation with his mom. By 10:00PM the show had not yet begun, and D. was hanging on by a thread, getting wilder and wilder.

He ran and came back. Circled and came back. Ran again, almost slid baseball style into our blanket and asked,

"Seth. Do you believe in God?"

Seth nodded, "Yes."

D. said,"If there were no God, there wouldn't be any sky!" He raised his eyes to the night sky. Clouds were still visible and the moon was big and round. D.'s blond hair was tousled. His glasses made his eyes look bigger than their actual size. His face was a big loopy lopsided grin.

Seth said, "If there were no God, none of us would even be here."

D. spun around a couple more times, and then leaned in close to Seth's face. He pointed one finger in the air knowingly, cocked his head to the side and said, "Except, God."

Seth looked at D., but didn't say anything further.

I couldn't tell if he decided it wasn't worth getting into, or if D.'s statement made sense to him.

D. took off again, arms in the air, spinning round and round shouting, "God! God! God! God!"

And the fireworks began.

Sunday, July 05, 2009

Ohio Must Not Need Nurses


When I was a 13 year old girl, my friend's family brought me on their week long vacation to Wildwood? Ocean City? Atlantic City? I can't remember. It had a boardwalk. Anyway...we fried in the sun, slathered in baby oil, day after day.

Imagine our delight when a hunky lifeguard motioned us toward him from his perch atop the big white chair.

"Would you two do me a favor," he asked?

We looked over our shoulder to make sure he was truly talking to us, and then we giggled.

"Go to the next lifeguard station," he pointed to one about a quarter mile up the beach, "and ask that guard for the Sea Plus rag, then bring it back to me, okay?"

His white teeth. His solo flex abs. The fact that he was talking, to us! We giggled a little more, then went happily on his errand.

But alas, the next lifeguard didn't have the Sea Plus rag. He told us not to worry, he pointed down the beach toward the next life guard station. We would find it there, he was certain. We would return triumphantly to solo-flex boy! He would love us! God only knows how many miles we walked from white chair to white chair, before we figured it out. They were messing with us.

I'm beginning to think an Ohio nursing license is a bit like a Sea Plus rag.

I started applying for my license back in September. I've worked in several states, and I always keep my license current for the state I'm living in, even if I'm not working. I'm not saying I'm ready to rush out and find a nursing job any time soon, but I like to have the option. Ohio said they needed documentation from every state I've been licensed in. Totally understandable.

Will do.

Check.

I did my FBI background check.

I waited. I called. Can't talk to a real person. Ever.

Finally after months, the clouds parted and a voice, a real voice came on the line.

New York is holding you up. We don't have their papers.

Lousy New York. I got right on it.

Never heard anything.

Many phone calls later, I got another live body.

We need your license to be current for the last state you were employed in.

But that was Maryland. That was two states ago. I have not been *employed* as a nurse in five years(though I have had a complex and all consuming caseload of one and my knowledge base of autism far surpasses most pediatricians).

Well, you need to reactivate your Maryland license in order to get an Ohio one.

But I haven't worked there in five years and I no longer live there. Would they even give me a license? And in the meantime, my Virginia license which was current nine months ago when I started this process, has expired!

Silence.

Can I just take a refresher course or something?

Only if you already have an Ohio nursing license.

There's seriously no way to get a nursing license if yours has expired? Can I take the boards again? (I am a good student and they weren't that hard. Nursing school was difficult. The boards were not).

She didn't know. The Ohio nursing board doesn't know what to tell me.

Maryland isn't calling me back.

It's not looking good for the Sea Plus rag.

*photo from http://www.shop.advanceweb.com/

Saturday, July 04, 2009

Pretty Much His Motto

Our neighborhood has a July 4th parade. At 11:00 everyone gathers on one end of our street. This isn't a parade you watch. It's a parade you join. There is a fife and drum corps. All the strollers, bikes and scooters and children and even some of the dogs are decorated red white and blue. Lots of noise and lots of people, lots of flags. The procession ends around the corner at the kid's elementary school where there are snacks, and a clown who makes balloon animals for the children.

Seth rode his scooter, Riley marched, waving her flag wholeheartedly.

After they got their balloons, and after they ate ice cream sandwiches, Seth licked his fingers, then put his hand up over his eyes as he surveyed the area.

"So far so fun," he said, before taking off to run with the other kids.
~
Happy Independence Day!

Friday, July 03, 2009

Seth is working on a book...

It's too early in the creative process to share many of the details but I do have permission to divulge the title,

101 TRILLION REASONS WHY DIGGY TICK'S LIFE IS BAD

He's been working on it every spare moment over the last two days. I've read the first chapter and it is chock-full-o-adventure.

Don't ask me why the main character's name is Diggy Tick. I have connections, but even I'm not privy to that kind of insider information.

I'll keep you posted. You heard it here first.

Cris, I Owe You One

So while we were in our hometown last weekend, we got together with my friend Michelle and her husband Cris. Actually, they forced themselves on us, phoning repeatedly at Todd's parent's (after 10PM), with Cris calling us "losers" if we refused to come to a party at Michelle's sister's house a few streets over. Stepping out after 10PM? Unheard of in these here parts. There's youngens to tend to in the mornin!

But, we hadn't seen them in forever and knowing these yahoos, if we didn't join them, they'd likely call again, and possibly wake up the kids and definitely irritate the in-laws so, we took off our jammies and threw the clothes we'd been in all day back on and headed over to the party(in honor of Michelle's niece's graduation). I've known Michelle since we were in second grade and it was fun seeing so many of her family members gathered in one place. Then, it happened.

Michelle's husband Cris, always the life of the party, talked about how he'd done some IT work for a salon type place, who didn't want to pay him. They instead tried to barter with the offer of a free colonic.

I'm troubled.

It's no secret I'm poop-a-phobic, but this is too much.

I can't stop thinking about it. Who is the colonic technician? How much does one get paid for this occupation? How do you look at someone with a straight face and offer them a colonic in lieu of cash? How do you walk in and place your order?

"Yeah, I'll have one of them there colonics."

The colonic operator says, "Oh goodie! I can't wait to insert the tube and start the flow!"

I don't mean to offend any colonic loving readers. Poop-a-phobia is my issue, not yours. If I don't want a colonic, I don't have to get one, and trust, I never will. But now I'm stuck with the image burned in my brain. And the questions!

Make it stop!

Thanks a lot Cris! It was great seeing them but perhaps we should have stayed in our jammies and gently taken the phone off the hook after they called the first time.

*I have no proof Cris actually ever received the colonic but for me, the damage is done.

Thursday, July 02, 2009

Things aren't always as they seem...

When we were making the video 4 Paws will use to match Riley with her service dog, it occurred to me, we don't have very many examples of the meltdowns on our own home videos. Usually, if one started, we shut the camcorder off. We needed to tend to her but also, who wants to capture that?

We did receive some pretty strange looks while making our tape for 4Paws. What kind of lunatic just stands there, videotaping their child screaming? If Riley has taught us anything, it's things may not always be as they seem:

-Were we uncaring parents, getting their jollies taping their distraught child?

-Were we parents who were willing to try anything, even going out on a limb, doing a lot of work and (gulp) asking for help to see if maybe, just maybe, a service dog might benefit their little girl?

Looking through some old home videos recently I did come across one of Riley having a meltdown. She was three years old. In the video, she is bloated with a huge belly. Dark circles are under her eyes. We hadn't yet heard of special diets. We hadn't heard of bio-med treatments. We'd barely heard of autism and certianly never heard of Asperger's.

On the tape, Riley was singing and then I don't know what set her off, but she began to shriek.

In the background Todd asks, "What's wrong?"

My icy voice can be heard saying, "Just another tantrum." Then, sarcastically I added, "Each one just as charming as the last."

Watching this, hearing my tone, I cringed. We'd been to see the big guns. Some of the top neuro folks in the country told me I was making a big deal about nothing. No help. No true diagnosis would come until she was 4. A small tired part of me was believing she was just a willful child. Thank God the larger part of me didn't buy it. She'd been screaming for a year and a half at that point. It would go on for another year before we found help.

If you are in a similar place, keep looking. Don't believe there is nothing you can do to help your child. Biomedical interventions work. Find the right professionals. Get a loan if you need to. Your child's behavior is trying to tell you something.

In the video, in the middle of her meltdown, with tears streaming down her face Riley cried,

"I want to be happy!"

At three years old, she knew this was not how it was supposed to be.

"I want to be happy!"

It struck me as profound.

That's all any of us want, when we have our little tantrums. When the toilet paper hasn't been replaced. When the guy in traffic cuts us off. When we just want to type without being interrupted, for once.

I don't claim to always be happy, but I do know we got our child on the right track by focusing more on where we were going and less on where we had been. More on those who could help. Less on the rat bastards (not that I'm bitter) who didn't.

I want to be happy.

Some would say I abandoned *the cause* when I stopped involving myself in the political battles that swirl around autism. But things aren't always as they seem. I actually think more people talk to me about autism now, than when I was all fired up. I am happy to share what's worked for Riley and my opinions on autism with anyone who asks. Only if they ask.

There were moments I used to think Riley's screaming was a curse I was going to have to bear for at least the next 20 years, and then God knows what would happen. Go ahead and judge me, I don't give a rip. You listen to your kid shriek for 2 1/2 years and get back to me, okay? It turns out this child and everything about her has been the opposite of a curse. She's been the most precious gift.

Lesson one may have been "things aren't always as they seem." What I've also learned from having this beautiful child in my life is this: Even if we're not there yet, even if we can't see it, we always have the choice to turn in the direction of the happiness we want to feel, and keep stepping.

Wednesday, July 01, 2009

Wishful Thinking

Riley stayed under the covers this morning, calico cat purring at her feet. I climbed in to snuggle, hoping gradually to get her moving. Tanya stretched and walked within petting distance and Riley's hand came out from under the covers to reach for her.

Groggily, she said, "Mommy, I wish we could put Tanya's uterus back in, so she could have kittens."

I don't know about you, but I'm pretty sure I wasn't throwing the U word around at the age of nine.

Besides, does this look like the face of someone who wants a bunch of snot nosed furballs pestering her? I didn't think so.