Bad Idea

I never cut my hair. I rarely even get trims. I've been trying to grow it for five years now. It's actually gotten pretty long, down to my bra strap on my back. But, it was straggly and unkempt and lifeless and thinning and just not looking good. And I wear a baseball hat everyday. So I was really excited about getting my hair cut today.

Bad idea.

I went to someone new. I had a vision. I brought pictures of exactly what I wanted. Did I leave with what I wanted? No.

I wanted a couple of inches cut off and my hair shaped and styled with long sweeping bangs to one side and some long layers with wispy ends.

What I got was about 6-7 inches chopped off ub a straight across Dora the Explorer hair cut with short bangs. I brought pictures because I am a visual person and I thought it would help get what I want across so that there would be NO confusion of trying to understand a verbal description. I brought several pictures actually, all very similar so that in case maybe my hair wouldn't do exactly one, there'd be another version that might suit me better.

The stylist was very nice and agreeable, she told me it was no problem, we could do it...she even laid the pictures I brought out on her counter I think to show me that she really understood.

Because of my bad hayfever allergies, I wore my glasses instead of contacts. So she asked me to take them off. I can't see my nose in front of my face without them. I never even saw the first 7 inches fall and hit the floor. By the time I realized it, it was too late. I was really super clear that I wanted to keep my bangs long. Nope. They too were not spared.

It's not a BAD haircut. The cut is a nice cut and it's not about the quality of the cut. It's about not getting what you ask for or reasonably close and it was $50.00. So my hair is now short and very plain jane school marmish. I went in for a fresh and fun look and I came out with something from 1989. I'm definitely feeling pretty now. Thank goodness for my hat collection. It will grow right?

Negative Self Image

I've been ignoring my self image for the past 4 years or so. Maybe longer, I can't exactly remember. I purposely avoid mirrors. When you don't feel pretty it's hard to make an effort. And the less effort I make, the worse I feel and so the vicious cycle continues.

I've gotten lazy and indifferent about my appearance and I have no one to blame but myself. I have a lot of excuses. I tell myself: I'm too busy. Too tired. Too stressed. Too old. Too fat. Not worth it. When you tell these things to yourself over and over you begin to believe them and then why bother? I think that's why it was so easy to eat a tub of ice cream and wash it down with a root beer float. It's why my weight has gotten away from me.

Food became my only distorted sense of comfort to my pitiful self-loathing. Everything is effected. My relationships, my moods, my sleep, my health...the list just goes on and on.

I can sit here all day and make excuses about how maybe I wasn't hugged enough as a child or a hero let me down; but it happened because I let it happen. I started feeling worthless and just wanting to get through the day burying myself in work and being overwhelmed with the Doodle's excessive and special needs. How easy is it to throw a baseball hat and some sweats on and hope no one notices? It became easier to think of reasons to avoid leaving the house and seeing people in a social setting.

Time for a change. I need to put my money where my mouth is and realize that I do matter and I am going to put myself back on the list even if I have to squeeze it on there.

On the bright side of this depressing post, I've lost 18 pounds and I'm hoping to lose 15 more. It was invigorating to clean out my closet and get rid of the majority of my fat clothes. I was wearing maternity clothes from when I was pregnant with the Doodle for goodness sake...who's fault is that? I'd love to blame it on my metabolism or thyroid but it's ME.

Not sure when my mood will come around but I'm starting my new found love of myself with a new hair cut tomorrow and a manicure. And maybe even eek in a quick workout. Wish me luck.

Ahhhhhh.

This is what it feels like to relax and be stress-free in a store. It was all coming back to me.

As I walked casually strolled and took my time browsing through Borders Books and Music with other like-minded-autistic-child-free adults, I felt a sense of peace. And quiet. The kind of quiet that doesn't require a "shhhhhhhhhhhh" or a covering of the mouth with your hand.

The last time we were at Borders within ten minutes the Doodle set off the emergency exit alarm, threw a buttload of books on the floor and screamed. A lot.

I walked through the store browsing the Bargain Tables and tonight it was buy 2 bargain books and get the 3rd for FREE! I loaded up on all kinds of stuff I didn't need including a book on cupcakes which ought to be fabulous for my diet and a book about Pirates. I even bought a couple of $5.99 cd's: One Republic and Train, two of my favorites.

As I approached the check out counter and momentarily had the sick feeling of forgetting the Doodle somewhere since he wasn't with me...I had a vision of an unflattering security camera picture of the Doodle violating the emergency exit and me falling on my butt taped behind the counter to alert the clerks should I attempt to bring him in the store again.

My unnecessary purchase went off without a hitch. No one commented on what was wrong with my child or tried to pretend not to notice his tantrums. Somethings, I've decided, I should not force on the Doodle. Bookstores and Libraries are two that come to mind among about another thousand places I should add to that list. Maybe someday the Doodle will find a love for reading and like being in a bookstore as much as I do without taking his shoes off and knocking things over. But, for now, I will enjoy the bookstore all by myself.

Trouble

Recap of the Doodle's busy day...

Broke the chanel changer, again.

Dumped out a box of Cherrios.

Cooked a fork in the microwave.

Smashed a porceline box into pieces.

Turned the bathtub on and ran away.

Fell off the stairs.

Took his pants off and threw them out the front door.

Locked himself in the pantry.

Tried to flush a cup down the toilet.

Clean Up on Aisle 16

Every time I take the Doodle to the grocery store I tell myself, "it's your own fault". When I only need a few things, I think, "how bad can it be"?

I know that once I enter the market, the Doodle has one thing on his mind. Chips. We must head straight to the chip aisle or we are in full blown autism mode. I can keep him quiet with a few chips if I push the cart really fast. I don't dally or waste time, I multi-task and attack the store like a expertly trained Navy Seal. I divide, I conquer and I never back track.

So we go to the chip aisle and surprisingly, he doesn't want Doritos. But now, he has no idea what he does want. He's frozen and can't make a chip decision. I point to numerous bags of chips and he shakes his head NO. He's completely overwhelmed with the chip selection. So finally he decides. He wants Pringles. So I give him the Pringles. It's all about taking the lid on and off and not so much about the Pringles. Ahhhh. But it's quiet.

I do my best to pick up the pace and get the few things I need. The next thing I know the entire can of Prinlges is dumped out in Aisle 16. People just stare. Ok, Ding Ding Ding, I guess my time is up.

So I head to the check out line. I tell the checker lady that my son just dumped out an entire can of Pringles on Aisle 16. By now, since we're out of chips, the Doodle is in full blown autism mode. He's shaking his head back and forth and kicking his feet. She looked at him and then at me and asked me if he was alright?

"Yes, just a little overstimulated right now. He's autistic", I explain.

"Oh. Well at least he has his health", she says.

"Actually, nope, he doesn't have that either. He has severe epilepsy and he's on a lot of medication right now", I tell her without missing a beat.

"Paper or plastic?", she asked being careful to avoid any eye contact with me or the Doodle. Thankfully, she didn't try to make anymore genius small talk and then finally just put her head down and scanned my items.

See No Evil, Speak No Evil, Hear No Evil

Splitting hairs...And I'm not just talking about the Doodle's new botched up haircut I gave him. No, I am speaking of the Doodle's second Progress Report for his special ed day class. I've got some issues. Again.

No surprise that something such as this would set me off. I actually got into a very heated discussion with the Doodle's teacher at a home visit in November...when I received his first progress report.

So in special ed, you write goals very specific to each child's development. Since this is my first experience with IEP's and special ed and medically fragile and autism and epilepsy, I'm pretty new to this. I'm taking it one day at a time mostly and trying my best to understand how this whole thing works.

I was pretty disappointed with the goals that the Doodle's teacher scratched out for him. I thought they were very general, nonspecific to his needs and frankly, thoughtless and lazy. For example, I found out after our first home visit that the Doodle had one speech goal for the year broken into three goals for the year. Two short term goals=to communicate five new words with 4/5 accuracy by Oct 30 2009and March 30 2010 and one long term goal by August 2010 which would be the combination of the two short term goals = 10 New Words.

So this teacher who does not specialize in autism since the Doodle is in the medically fragile class and is the only autistic child in there, writes these willy-nilly goals and then has the nerve to sit in my living room and tell me that he hit his short term goal because they thought he said Help one day back in October. Once. Never again. Never repeated. So we proceeded to go around and around about how very generic his speech goals were and how just because she thought he might have said word once, it surely wasn't with 4/5 accuracy which means the short term goal was definitely NOT MET. I told her that I didn't understand how he went from having 6 specific speech goals in July to having just one in August when the new school year started with her? I asked her if she ever even read his original In-Shape goals? She hadn't. And what was even more irritating that the Doodle's previous speech therapist just happened to be the speech therapist that works in the Doodle's medically fragile classroom...hmmmmm. Did she have zero input in writing the speech goals for a kid she just worked with for almost a year? What about making animal noises? Or blowing? Or sucking? Or taking turns and listening? Before those were all on his "speech goals" and were things he worked on with his speech therapist.

So I was mad. And disappointed. And irritated. This is the same teacher that "forgot" after 3 reminders that the Doodle was entitled to some Physical Therapy and a Physical Therapy evaluation and it took a call to the Principal to get that going 90 days later...I told her she would have to excuse my level of trust in her capabilities...So we argued and went around and around and the teacher felt like I was attacking her. Which I kind of was, because I asked her, well if I have questions or want to change a goal who the heck would I turn to? I thought it seemed pretty likely and obvious that I would bring my concerns to her since, after all, she was his TEACHER. Needless to say, that meeting didn't go well.

To make a long story even longer, I just received the Doodle's next progress report and I about crapped my pants. I turn to the speech section to look at his whopping one generic speech goal and I am reading about his progress and in it, his teacher has the audacity to list out all of the Doodle's signs as if they were "NEW"...no they were not new. He has one new sign for Thank You. All of the other signs he has had for over a year...and she knew that. Did she think she was tricking me? Or was she just checking to see if I'm paying attention? When the Doodle started school in August, I listed all of the signs that he does at the IEP meeting, she wrote them down. His speech therapist also knows they are "OLD" signs. So WTF? I get that "New" words falls into a broad variety of communicating: words, signs, pecs, etc. Regardless, she listed an old list and then stated "SHORT TERM GOAL MET".

If he's not meeting his speech goal what happens to her? Does she get taken out back and receive 10 lashings? Does she get a cut in pay? Does it go on her record? Hell no. So why not be honest and write down the truth? Obviously I know my son is not talking or learning any new signs. Do I hold her responsible? NO. Absolutely not, no one can force or make the Doodle talk. He will talk when he is ready and that may be never and that's hard. But what I do not need is a lazy teacher trying to convince me that my son is meeting his speech goal when in fact he's not. It's hard enough fighting the autism fight at home, I live it every day. I shouldn't have to now fight with the teacher about it. Just because she wrote down that he said egg once and good morning once does not meet his goal.

So now we are having another home visit.

At the last home visit that turned into a big argument, she made a comment that maybe she shouldn't come back for another home visit because of the way it turned out. I agreed with her and told her not to plan on it unless she brought a Mediator with her. And so this next meeting we have she is bringing the Supervisor and the Speech Therapist. It ought to be a good one because I will not sit and say nothing. I will, again, speak my mind because I can and I should. And the Doodle cannot speak and it is my job as his mom and his advocate to be his voice. And if I get stuck with the lable of being a bitch or a pushy, demanding mom so be it. Don't put into writing and try to convince me that my son is meeting a goal when I know and everyone else knows is completely not true. I'm sorry but ONE speech goal and 20 minutes a week of GROUP speech therapy for a completely nonverbal child is not acceptable.

Pepe is Back

Last year we had a Peacock suddenly appear and decide to make our property it's home. It was here for a few weeks and we named him Pepe the Peacock. Then, as fast as he appeared, he left. Vanished.

I always wondered where he went. Was it something we said?

Well. Pepe is back and louder than ever. His calls seems more like a wild cat in heat, I guess he's just letting us know he has returned.

Born with IT?

Or developed IT?

Will we ever know?

Does it even matter?

It won't change anything.

God Said No

A dear and beautiful friend sent me this in my email today and it made me stop and get quiet with myself which is hard for me to do...sometimes my life seems like it's in such chaos, I forget to think and put things into perspective.

----------------------------------------------

I asked God to take away my habit.
.

God said, No.
It is not for me to take away,
but for you to give it up.


I asked God to make my handicapped child whole.

God said, No.
His spirit is whole, his body is only temporary.

I asked God to grant me patience.

God said, No. Patience is a byproduct of tribulations;
it isn't granted, it is learned.


I asked God to give me happiness.

God said, No.
I give you blessings;
Happiness is up to you.


I asked God to spare me pain.

God said, No.
Suffering draws you apart from
worldly cares
and brings you closer to me.


I asked God to make my spirit grow.

God said, No.
You must grow on your own,
but I will prune you to make you fruitful.


I asked God for all things so that I might enjoy life.

God said, No.
I will give you life, so that you may enjoy all things.


I asked God to help me LOVE others,
as much as He loves me.

God said... Ahhhh, finally you have the idea.

(Thank you Dottie!)

Walk In My Shoes

Walk in my shoes for one single day.
Then you'll see why I need to pray.
Come live in my home for a week or two and
then remember I am just like you.
I didn't ask for the things I was given
I didn't choose this road I have taken
Walk a mile with me hand in hand
Then perhaps you will understand.
I'm not really complaining about the stress in my life,
I know that we all have some toil and some strife.
But walk with me, when you think I am wrong,
walk with me and you'll start to belong.
Embrace my sorrows, like they are your own,
And then you will know me
And see I have grown.
The journey I take is different from yours
My life took one of those unexpected detours,
But this road that I travel is not really so long,
If the people who watch me will join in my song.
Listen to my footsteps and watch how I dance
And then you will know me and give me a chance.
Take heart and remember
It can happen to you,who knows
where my pathway will cross over to you?
So speak to me softly if you can't understand
Remember I once stood right there where you stand.
And walk with me gently when the day is at end.
And then I will know I can call you my friend.

copyright 1999
Sally Meyer

My Broken Record

I wonder if all moms of autistic children hear the same broken record playing over and over in their head all day long. Am I the only one who wakes up in the middle of the night with my heart racing checking to see if this has all just been a bad dream?

Maybe I'm crazy. Not in a lock me up in a pink padded room kind of crazy because
I'm not hearing voices and I don't sit and talk to myself out loud . I mean, I do hear "a voice" but I think it's my own and I'm just talking to myself or maybe it's my way of talking to God.

It's nothing profound. They're just a series of questions I ask repeatedly hoping for an answer to the unknown. My unknown. Sometimes I feel like Columbo trying to crack the case.

Will he ever talk? Is the medicine working? Will he outgrow these seizures? If he does talk is it going to be crazy talk and am I going to be remembering the good old days when he didn't talk? Is he learning anything new? Will his life ever get easier? Who really shot Kennedy? Will he ever just take NO for an answer? Will our lives ever be normal again? What must it feel like to be a Doodle? What does his future hold? Will he ever be independent? What caused this? Is this my fault? Are you even listening to a word I'm saying? Repeat.

So now you know my internal dialog.

Serendipity

I'm a garage sale/flea market/thrift store junkie. I love the hunt almost as much as the purchase. I go garage saling every Saturday that I can and I can always find something. I've found some pretty amazing things. But today I hit the mother lode.

I was at a garage sale and in the garage was a wonderful old antique Wing & Sons New York upright concert grand piano. It looked to be in fairly good shape and what caught my eye was the gorgeous detail and carvings. So I was asking about the piano because, well, I've always wanted a piano so that I could take lessons and learn to play. The nice people were telling me all about the history of the piano and how their daughter learned to play on it and how it was made in 1916, and they were showing me the dates written on the inside each time it had been tuned: 1923, 1932, 1958, etc.

Then the nice people's 18 year old daughter sat down at the piano and played a song on the real ivory keys. It sounded beautiful.

I hadn't gotten around to asking how much it was when I saw the sign on it that said:
FREE TO GOOD HOME.

I about wet my pants with glee. 1916? Wow! This piano is almost 100 years old! I love wondering about the original owner and where they lived and how many people have had this piano and it's rich history. In the old days, people used to gather in the parlour or sitting room and actually sit around the piano and just be together. No television. No computers. No video games. Music was the big excitement at home and at parties.

I couldn't believe it. I told the nice people that I wanted it. And they said great, all you have to do is move it.

Oh. Right. That.

Then I remembered this was a big heavy piano that I might have a hard time sneaking into the house and putting somewhere and then when Jim asks me where I got it I'd say something like, "Oh that? It's been there for a long time. Don't you remember?"

I couldn't do that this time. I was going to need his help and the use of his trailer because the piano weighs about 600 pounds and although I'm pretty strong, I'm not that strong. I called him up all excited about my fabulous find and surprisingly he did not hang up on me. He was actually happy to hook his big enclosed trailer up to his truck for me and go pick it up.

So now, you are looking at the proud owner of a piano. I can cross piano ownership off my bucket list.

Jimmy wants to take lessons and so do I and maybe someday the Doodle will want to play. How wonderful that would be if we found something like music that he enjoyed doing besides changing the channel on the t.v. Maybe he will be the next Mozart.

Now we just need to figure out a way to get it into the house.

Say It Aint So

"Popular estimates of the divorce rate of parents of children with autism are 80 percent and above," said Lori Warner, director of Michigan's Beaumont Hospital's HOPE Center, which works with children who show signs of autism.

"Parents of children with autism are at higher risk for anxiety and depression," Warner said.

No shit lady.

I can attest to both of those opinions, it does put a strain on your marriage (and most other relationships); especially if one person feels like they are taking on the brunt of the care and the other one doesn't help out so much. Or care as much. Or get involved as much.

And you do get worn down to the point of depression because you can never fully understanding the WHY in this. You can't help but feel responsible. Even if you don't feel responsible for the autism condition constantly asking yourself how you could have prevented it? You feel responsible for bringing this little person into the world who now has to cope with all of these challenges for the rest of his/her life.

One of my favorite Hollywood couples just broke up. I thought they were the perfect couple and had it all. The Queen Spokesperson for DAN! Doctors and Autism advocate and America's funny guy announced their break up over Twitter.

Just two months ago, on Valentine's Day, Jim Carey hired a plane to write "J Hearts J" across the Los Angeles skyline to his girlfriend Jenny McCarthy. He had said that her son, Evan, taught him how to love.

Jenny McCarthy has openly discussed that the stress of their son's autism is why she and her first husband, John Asher, divorced in 2005.

But this time around seemed different. She seemed to have nothing but support and love from Jim Carey. She was so involved in autism awareness and Jim Carey was always by her side.

She concludes that she cured her son of autism with diet, detox and therapies; which would mean that the speculation that the stress of autism contributing to the break up is a bunch of hooey. Right?

An Interview with Jimmy

1. What is something mom always says to you?

Have you done your homework?

2. What makes mom happy?

When Dominic does something new.

3. What makes mom sad?

Wondering about Dominic.

4. How does your mom make you laugh?

Telling me jokes.

5. What was your mom like as a child?

She had a lot of long hair.

6. How old is your mom?

Pretty old. 42.

7. How tall is your mom?

I don't know but I'm almost as tall as her and we wear the same size shoes.

8. What is her favorite thing to do?

Sleep in and watch cartoons with me and my brother while she drinks her coffee dad made her and checks her facebook.

9. What does your mom do when you're not around?

Takes care of important things and buys lots of stuff she doesn't really need that much.

10. If your mom becomes famous, what will it be for?

Decorating and buying stuff.

11. What is your mom really good at?

Using her orbital sander and buying junk that she can make look nice.

12. What is your mom not very good at?

Trying to not buy stuff.

13. What does your mom do for her job?

Works a lot.

14. What is your mom's favorite food?

Candy bars.

15. What makes you proud of your mom?

When she's proud of me.

16. If your mom were a cartoon character, who would she be?

Cinderella

17. What do you and your mom do together?

Go to movies and the mall.

18. How are you and your mom the same?

We are both never wrong and we have brown eyes and like to buy stuff.

19. How are you and your mom different?

She's the boss and I'm a kid.

20. How do you know your mom loves you?

Because she tells me every day.

21. What makes your mom mad?

When dad does stupid things and I talk back.

22. What is a nice surprise for your mom?

When dad brings her flowers and I clean my room. She's not surprised very much.

23. Where is your mom's favorite place to go?

Anywhere there's a sale going on.

The Pros and Cons of Living in a Vineyard

CON


The Vineyard manager just put up 3 ginormous wind machines to protect the vineyard from frost. So automatically when the temperatures hit 32 degrees, the giant fans start up and blow. This can happen at anytime during the middle of the night. No schedule. No warning.


The first time the fans went off, I thought there was a helicopter circling our house looking for an escaped convict.


Nope just the fans.



PRO

Living here is beautiful and we get free wine.
So what's a little noise amongst neighbors when an award winning vintage is concerned?
It's not like I'm sleeping anyway.

Taxes, Taxes and More Taxes

I get it. We have to pay taxes. No surprise.

But why so much? Geeze. How do all of these new laws get passed? Surely we aren't voting on them all. It gives one a new appreciation and admiration for the Boston Tea Party.

I went to H&R Block today and had our taxes done. I felt like I was kicked in the stomach by the time I left there. I know I should feel lucky to have a job but why do I feel punished now for a being a responsible adult in a two income household trying to support our small family.

If you don't have a child with special needs you've probably never had to think about this before but I cannot believe there is no tax credit for caring for a child with special needs or a serious medical medical condition. How is that possible? I'm still scratching my head.

We have great health insurance but still had thousands of dollars in co-pays, deductibles, prescriptions and things the insurance didn't cover. We don't get to write those off because it goes by your taxable income or some crap like that.

I do get to write off what we paid for nursing, but you can write off all legitimate daycare expenses for "normal" children as well so there is nothing special about that.

Even Jimmy got 1099-ed. He made a whopping $1000 after his agency took their cut last year for modeling in a Dell Computer ad. So we had to do a return for him too...even though "I" had expenses far exceeding his check: pictures, zed cards, clothing, parking, bridge, etc. What a waste. H&R Block is not cheap.

To ad insult to injury, I'm thinking who was the government genius that decided it would be a good idea to make income taxes due around the same time county property taxes are due - within five days...and then why are property taxes due again right before Christmas? Does anything make sense anymore?

Gas taxes, road taxes, retail taxes, cell phone taxes, cable taxes, luxury taxes based on what you drive... dmv fees, park fees. Hello, Mr. Schwarzenegger, what are you doing with all of our money and why do our roads still suck and why have the libraries been closed in Elementary schools and why is there no Physical Education? Last year the State of California held tax refunds and sent IOU's.

Current National Debt, a mind boggling $12,826,379,456,286.85 and rising…It's too bad we can't claim Uncle Sam as a dependent. I've decided it really sucks to be an adult.

Like the Weather

We've had a rainy couple of weeks around these parts. We live in the Sonoma County Wine Country in not-so-sunny California. This Spring has been a wet one, and I'm not complaining because we definitely need the rain.

But Spring here is tricky. It rains and rains and then all of a sudden there is a break in the clouds and the sun pokes it's head through long enough to remind you what it is like to have it's warmth on your face...what it feels like to go outside in shorts and no jacket. Suddenly you find your self opening your windows to let the fresh air inside, you start taking walks, working in the garden and firing up the BBQ and just as you begin to make plans for a bike ride or weekend picnic, it rains again with no end in sight.

We had a few beautiful, warm spring days and then it was so cold it was dumping hail. You can't get too comfortable or confident with the weather because one thing we do know about it, it's going to change. Again. It's as if mother nature is just messing with us.

And today as I watched the downpour from my kitchen window quickly change to sunshine, I thought about how similar Autism is to the weather. It's unpredictable but expected. Constantly changing but always the same. Bright with patches of darkness. Hopeful, yet sometimes very bleak. Stormy, wild and turbulent with heavy gusts.

Meteorologists refer to repeating weather as a weather pattern. It is common for the weather to become locked in a repeating pattern for a period of a few days. I live with a similar weather pattern in the form of a 3 year old with OCD tendencies. We go from several days of being locked on the channel changer to several days eating Doritos or throwing things out the front door. If you ever come by and there are carts and toys and other miscellaneous items strewn about on the front porch and walkway, that's what that is all about.

Being the Doodle's mom is an adventure, you might say I'm a "storm chaser". Chasing after his fits and tantrums and the aftermath of his hurricane like actions. Then when you add in the extra trails of trying to take a decent picture of him, well, then it's more like a Survivor Challenge. Like the weather, you have no choice or control. In some ways, you are completely helpless and at the mercy of the "storm". Some days are worse than others and all you can do is accept it for what it is.

So as I thought about all of the things I could be doing if it wasn't raining and as I wished for the rain to stop I remembered one of my favorite quotes, "Without rain, there would be no rainbows".

Our Model Son

Jimmy's been modeling for a couple of years now and has been booked for some really great jobs. He's got an agent in San Francisco and every so often we have to go on Go-Sees. He's been on the cover of Pottery Barn Kids, a National Dell Computer ad and their website, and a couple of National Geographic toy product boxes.

The other day we got a call and he was picked from his headshot for the new Hasbro Deluxe Family Game Night box. First they photographed him with his "new" family and then an artist will illustrate them for the Hasbro Game Box. In this special edition will be four classic games: Scrabble, Clue, Sorry and Monopoly + two card games.

I'm so proud of him. What I love about this is that people keep their games around for a long time. They sit on a closet shelf for twenty years. Someday, maybe when Jimmy has children of his own, this game will be a collectors item. How cool is that?

A Date Night to See Date Night

Oh the irony. Where do I begin?

Jim and I attempted a date night tonight. You know, some alone grown up time. And then our ten year old began begging to go. Now all of a sudden Jimmy really really really wanted to see the movie because you know, it's his favorite movie ever. I tell Jim it's up to him and he feels bad for being gone all week and not spending time with Jimmy so what am I going to do?

In the comedy "Date Night," Claire and Phil Foster are a tired, overworked mom and dad bored with each other and eating at the same old restaurant. Their busy lives are all about work and kids; marriage is a bore and sex is a chore so they "steal" someone else's dinner reservation at a New York dining hot-spot...only to be mistaken for a wanted couple they are pretending to be by a crime boss and his goons for blackmail. Now their date night gets interesting.

The fabulous comedy dream team, Tina Fey and Steve Carell, are perfectly suited for this movie with believable Dick Van Dyk/Mary Tyler Moore chemistry and some great one liners. They actually seem married.

I'd say the movie spoke to me.

Sadly, the movie had some serious and touching parts like how easy it is to fall into a mundane routine and forget the importance of your relationship with your spouse. I thought yes, absolutely and then I reached over to hold Jim's hand but it was a little awkward with Jimmy sitting in between us so I reached for the popcorn and chocolate instead. Did Jimmy understand the irony of tagging along or have any kind of ah-ha moment where he thought, ooooh....maybe I should have stayed home and let my parents have one night every six months alone? Nope. He was just happy to be out with his mom and dad at the movies and why wouldn't he be? He's ten.

There's a part where Claire was talking about her biggest fantasy is to go somewhere, like check into a hotel room, and just be alone for a while. She says, "There's always someone touching me! Someone is always touching me, and their boogers are on me and their food is on me."

Aint that the truth.

It was a funny and sweet movie and it also didn't hurt that Mark Wahlberg had his shirt off in all of his scenes. He should really consider removing his shirt more in his movies.

I'd give this movie three and half doodles.

Girlfriends and Retail Therapy

I'm making a commitment to myself these days to try not to be such a homebody. If I get really analytical about it, since the Doodle's seizure disorder struck a year and four months ago, I haven't felt much like leaving the house and because I work from home, I don't leave the house to go to work either. Basically I am home at least 95% of the time. I pop out for groceries or a garage sale and sometimes to my bosses events but mostly I'm at home.

So I sit at home, worrying mostly. My job is my biggest escape. I have work to take my mind of things, but I would say the last year + has been my worst experience with depression. And for me, with depression, comes weight gain.

How's the diet you ask? Well. According to the old black scale, I've lost between 12 and 14 pounds; my pants are looser and I don't feel as puffy. Just 25 more pounds to go and I'll be good! At this rate, by Christmas 2014 I should almost be there.

I had an epiphany. Part of my depression and weight gain is because I don't get out. I don't go places. I don't do much of anything. When you look like crap all the time and feel like crap, it makes me not want to see anyone. I don the hat and glasses, no make up and sweat pants. I venture out to Safeway and keep my head down in hopes I won't run into anyone I know. Pretty soon I'm going to be locked away in a closet living the reclusive life of Howard Hughes. Soon, I'll stop all hygiene and refuse to clip my nails. Ick.

I need a plan. And with the help of my good friend Michelle, she has been encouraging me to get out and walk with her. It's nice girlfriend time. Catch up time where I can talk about girl things; crap Jim doesn't want to hear or have the gumption to even try to understand.

We walked tonight and then went to the Mall. It was so nice to shop at a real store like Macy's without trying to pretend that I don't have an impatient screaming child with me or try to pretend he's someone elses...

It's been so long since I've shopped at Macys that I had forgotten what great sales they have. 75% off of the INC. line which is one of my favorites. So I walked and shopped--and bought 2 dresses, a blouse and a coat for $99 including tax. I was stoked and $99 is a small price to pay for temporary happiness.

The only bummer is that I'm still buying fat clothes. I don't want to be this size anymore. But it felt a little bit like a reward and something for ME. On the bright side I steered clear of Mrs. Fields and Orange Julius because the OLD me would have gone to the food court first and I wouldn't have just stopped at one milk chocolate without nuts cookie, because did you know if you buy 4 you get the 5th one FREE? But I held tight to my willpower and spent my money on clothes I won't wear instead.

Do I sound a little crazy? Sure but at least I'm not in denial. I've got that going for me.

Retail therapy really is a great diversion when you're feeling kind of crappy about things and every once in a while who doesn't need a diversion from the pains of LIFE? That's the magic of Macy's.

PECS

No, I'm not talking about these kind of PECS, although they are quite remarkable.











I'm talking about these kind of PECS.
If you ever come to my house you might see a bunch of these laying around, hanging on the walls, stuck to the refrigerator and in every room. We're trying out a Picture Exchange Communication System with the Doodle. They've been working on it with him at school and during his Shape appointments but it hasn't worked out too well at HOME as in the every day.

PECS is a way for nonverbal children to be able to communicate what they want or need by identifying a little picture icon and exchanging it for what they want. It sounds wonderful and in a perfect Doodle world would be an ideal way for him to communicate with us.

Sigh.

But we don't live in a perfect Doodle world. We live in OCD Land where the PECS icons have become an obsession. We've tried putting them in a binder, on a board, on a laminated sheet and all the Doodle wants to do is play with them and move them and reposition them and wad them up and see if he can rip them or flush them down the toilet. He got to be so crazy with wanting control of the PECS that the system became a bit of a nightmare here at home because there were too many pictures, too many choices and too many NO's.

He would see the binder on the counter and either climb up there and get it himself or insist on wanting it. Well of course I'm going to give it to him, because I think, OH GREAT. HE'S COMMUNICATING WITH ME. HE'S GOING TO GIVE ME A PICTURE RIGHT NOW OF WHAT HE WANTS.

But he can't decide. There's too many choices, too many things...and he'd rather just play with it and destroy it or throw it on the ground.

So the binder got to be a bit much and we had to hide it from him. Then I'm sitting there scratching my head and wondering how productive this can be if I have to hide it from him? Because if I hide it then no one is communicating anything with it. Maybe it's too soon.

How they do the PECS at school is more for a schedule of what is next, not so much choices...big difference.

He has a little laminated Velcro schedule that sticks to the wall out of his reach and it has the things he's going to do at school. So when it's circle time, with direction, he can go to his schedule and with supervision of the icons, take the circle time icon off the little board and walk over to circle time and sit down with the little picture in his hand. Same goes for lunch, bus, outside play. And that is working well. There. At school.

So I am now trying to figure out a way to replicate that same system here at home, but where I can control the icons and what they are. Because right now, if he gets his little hands on the outside icon, and he hands it to me...no matter what time of day or night or what the weather might be, he expects to go outside. And it's pretty hard after he's gone to the trouble to dig out this little icon picture of "outside" and he's communicating and requesting what he wants and then I have to tell him No. He gets really mad and even more frustrated because he really, truly does not understand why I'm telling him no and he expects instant gratification especially when he's "working" for it.

Betsy had taken several pictures of his favorite foods too: Very Vanilla Soy Milk, Cheetos, Spaghetti O's, Cereal, Gold Fish Crackers, Yoplait, etc. (I know, the breakfast of champions right?) The problem with the pictures of food is if he can see them on the card he expects that we have it and that I will give it to him. NOW. But, maybe I haven't been to the grocery store in a while and God forbid we're out of Doritos, the BLUE KIND and the Doodle brings me the Doritos card! What now? With a normal child you can reason with them, redirect them, offer them something else, satisfy them with a game or bubbles or the RED Doritos. Throw autism in there and you get to run to the closest 7-11 at 8:00am or the rest of your day (and his) will be a disaster.

So I've been busy devising my plan for PECS in our home. I have printed up hundreds of icon pictures and designed cute little framed boards to be hung out of his reach with pictures of basic things he does. I bought a laminator and I'm throwing caution to the wind and hoping he will get it without constantly melting down about this.

I'm hoping after some time, he will really get it and understand it and feel better about communicating with us. And then we will all be more:

Rocking the Boat

Summer school is right around the corner, and with summer school comes new decisions that need to be made which means another IEP (Individual Education Plan) for the Doodle.

At the last impromptu IEP they called in January, the one where they tried to get rid of our nurse, it was decided that we could keep our nurse through May 28th which is the end of the school year. This was agreed to based on the advice from our Doctor at UCSF in the form of a letter.

And now, we have an upcoming appointment with UCSF so I'm anxious to see what the Doctor says about this now. The last letter I have from the Doctor is that at the very minimum he should have a nurse through the end of the year and beyond. I know I'm going to have to bite the bullet and have the Doodle suffer through an agonizing 3 night video eeg with the toxic eeg glue...

So I received a phone call today from the Doodle's Shape Supervisor to ask me where I would like him to go to summer school?

Hmmmmm. Do I want to keep in the class he's in right now, the medically fragile class, and then move him into a regular special day class (for children on the spectrum, but they don't call it an autism class for some weird political reasons even though it most certainly and technically IS too). And then, if he does move to another class is that the class I would want him to be in next school year.

My thinking is if he's not going to get to have the nurse he loves as his one on one, I may as well move him into the special class he is going to be in next school year with a new Shape Assistant one on one. If I kept him in his comfort zone in the medically fragile class he's going to be used to having Nurse LuLu there and be looking for her and expecting her. And in that environment, I don't know that he'd give someone new a chance. He might just make the new person miserable. Or am I giving him too much credit? Will he even remember the nurse? The new Shape Assistant one on one he gets assigned is going to have some pretty big shoes to fill. It's not easy making a connection with an autistic child and this new person will be starting off from scratch...from riding the bus to understanding the seizure activity and everything else this little guy is packing in his bag of issues.

I've decided, if we lose our nurse, I will go ahead and move him to one of the other classes. Seems silly to keep him in a medically fragile classroom if they take his nurse from him which is supposed to mean he's no longer medically fragile right? But he still is. It only takes one breakthrough seizure or change in medicine to set him back and then we'd be starting all over, scrambling for another nurse.

Deciding which class is going to be hard because one of the choices is at his same school but just the class room next door that uses the same play ground. One of his Shape Assistants, Rachel, is in that class so he will have a familiar face. The other choice is at a different school altogether but is more communication and PECS driven. There he also has one of his Shape Aids, Betsy, so he'd have a familiar face there too.

As usual, I'm over-thinking things and losing sleep because of it. The Doodle doesn't do too well with change and transition and things are going so smoothly right now, I hate to rock the boat. Or, am I capsizing it?

So Close

Just when I think the Doodle has no idea of what is going on, he surprises me. He flirts with me. He hams it up for the camera. He knows if I'm gone because my mom tells me he goes and checks outside from the window to see if my car is parked in front.He cracks up watching his silly shows, does he really get it? He knows when he's not supposed to do something, I can tell because of the way he looks at me. He puts the phone up to his ear and then gets embarrassed. He can point to almost all of his body parts. He can open a can with a battery operated can opener. He can expertly operate a throttle on a dirt bike. He can peddle his bike. He's learning more signs. He's making more sounds. He gives himself time outs. When he wants something he goes and gets it or points. He loves to help and get things out of the refrigerator, pantry, drawers. He likes to help bring the groceries in. When you ask him if he wants to go bye bye or outside, he gets his helmet and shoes. He even knows the dog is there, although he refuses to acknowledge him.

He copies things he sees on t.v. He cleans up when you ask him to.

He gets things. He understands almost everything we say. It just has to be on his terms when he wants to. And I wish I knew what it was that isn't connected up there correctly in that little noggin of his that makes him process information differently, slower, delayed. I wonder if he can only hear certain sounds or key words and that's why sometimes when I tell him to "look at me" he leans in to give me kiss, as if I've said, "kiss me".

He's super affectionate and makes great eye contact; always has. It's why the fraud Dr. Julie Griffith, San Rafael, CA told us he wasn't autistic...the other day his little 4 year old cousin Zoe came over and he kept hugging her and trying to kiss her. Then he accidently lost his balance and all 44 pound of him tackled her.

He's always had a delay when you ask him to do something. I can say, "where's your nose?" and he stares at me with a blank look although I know he heard me. Then if I say, "where's your tummy?" He waits a second and then points to his nose. It's as if he's one command behind. Now when I ask him to do something or show me something, I know I have to say it at least two times before he gets it.

We're so close but yet so far. Welcome to autism.

Happy Easter

It was a wet and rainy Easter here at the Doodle's house. We never made it out of our jammies and managed to eat and nap our way through Easter.

We hunted Easter eggs and watched a family movie. It was a nice, cold and relaxing spring day.

Married. State of Bliss.

I can't think of a better way to spend a Saturday then to be coloring Easter Eggs with the kids and have Jim home from his 5 day spa-like work vacation at Lake Shasta.

Jimmy got pretty creative with a couple of the cracked eggs...he wrote things on them like:

"You Crack Me Up" and "Crack Pot". I think he gets his sense of humor from me.

I took the kids to Barnes and Noble today so that Jimmy could pick out a couple of books for Easter. Jim can't understand why I don't like taking the Doodle to the store with me--even on quick trips. Jimmy was talking to Jim on the cell phone when we arrived at the store, we weren't there for more than 5 minutes and the Doodle made a mad dash for one of the emergency exits which had a loud piercing alarm if opened. I ran to try to stop him from opening the door but it was too late and I slid on my ass a few feet when I went to grab him. All of the people in the store were watching. I could hear Jimmy tell his dad on the phone, "Oh that? That's just the Doodle."

We had a nice BBQ tonight in honor of our 11th Anniversary and attempted a family game night, but after just two high balls, my brilliant husband couldn't grasp the concept of the game CLUE so it didn't go so well. He kept blurting out all his cards so that Jimmy and I would both know which ones he had; obviously just to get the game over quicker. And just like Jim not liking to ask for directions when we're lost, he didn't want to hear how the game was actually played or read the instructions.

I'm going to cut him some slack since he doesn't drink much and couldn't even remember what to mix Bacardi with...7 Up or Coke.

It's nights like these that make me reflect on the true meaning of an eleven year marriage with children.

Shine a Light on Autism

Last night, the Empire State Building, JFK Air Traffic Control Tower, Miami Tower and dozens of other buildings across the country and around the world were lit up "blue" to commemorate World Autism Awareness Day which is today.

This is What a Good Mood Looks Like