Praying for a Cure

I recently got into an online discussion with a fellow blogger about a completely hypothetical topic that has been popping up on several blogs about autism. Now keep in mind this is completely fantasy and I know it, and hopefully these other bloggers know it too.

The argument is about what if there was this (hypothetical) magical pill that you could give your child to cure autism...would you give it?

So I was reading this woman's post about how she probably wouldn't give it to her child because it would be too scary for the autistic child to suddenly be "normal" after being autistic and that normal isn't all it's cracked up to be and how autistic people can lead happy and fulfilling lives and how you can be normal and get worse things, like cancer; and basically how terrific autistic children are and how she doesn't feel the need to try to "fix" her child because they have accepted the child, embraced the autism and love her all the same (I'm paraphrasing here).

While I completely respect her opinion, I felt compelled to chime in on the comment board because it really struck a cord with me.

First of all, autism is anything but beautiful. I don't care who you are. The child is beautiful; the child's soul and heart and spirit...all beautiful. But to talk about autism as this wonderful and precious gift, I think, is in some way trying to be almost righteous about it. Like, isn't my child special, he's autistic? As if autistic children are the "chosen" ones.

I know that some autistic people live happy and healthy lives. But talk to any verbal high functioning autistic adult who can put into words what it is like to be autistic and most will tell you how they cannot self regulate easily, have problems communicating, experience great feelings of turmoil, usually feel out of sync and uneasy in their own skin.

Would I give the Doodle a magic pill to cure his autism? ABSOL-FREAKING-LUTELY.

Without question or hesitation. And it has nothing to do with loving him any less if he was autistic or "normal".

As a parent, you want what is best for your child...

Is autism in the best interest of children? Life is hard enough for "normal" people, but a person with special needs, inability to communicate and developmental delays has to work so much harder and for obvious reasons has much more frustration in a "normal" world. Autistic children have it harder in school and as adults functioning independently. Some autistic children are violent and hurt themselves and others and have no self control. Some autistic children don't know the feeling of love and can't stand human touch. They go their entire lives locked inside themselves. Some autistic children (and adults) need to be institutionalized. And I'm just scraping the surface here.

With autism comes health issues...I won't list them all, but if the Doodle's seizures are part of his autism and his coordination, speech and muscle tone and sleep would be normal if the autism was gone, I would give him the pretend pill. I want to fix him! I'd do anything to fix him! And I am in no way ashamed to say that. It doesn't make me any less of a mom to want my child to have a chance at life; to be able to go to college or fall in love and have children of his own if that is what he wants for himself.

But that's just me.

White Boy Can't Jump

But he can march

And bounce on his butt

And do some dancing tricks

And take a bow.

We got the Doodle a little trampoline today with a balance bar at the urging of his Physical Therapist. For some reason, he can't jump. So we're hoping that the little trampoline will build up some needed muscle tone in his legs and help him with coordination and strength. The Doodle still can't walk up and down the stairs with any kind of ease or confidence. And if you saw him run, well. That's all I can really say about that.

Like most challenges the Doodle is faced with, we have no idea the cause of his uncoordination.

Is it the autism? The seizures? The medication? Or something else we haven't discovered yet?

If You But Knew

When I was a little girl I used to love to wear my grandma's slippers. Now, I'm watching the Doodle wear his grandma's slippers.

This was my grandma Ruth's favorite poem and although it is a love poem, the first two verses make me think about my love for the Doodle. Even on my hardest days as the parent of an autistic child, all I have to do is think of this poem. I am torn because most days I feel like autism is a curse yet the Doodle is also blessing in our lives, teaching us things I had never understood before. I've never known him any other way.

I tried to find who wrote this poem online but couldn't.

If you but knew

How all my days seem filled with dreams of you,
How sometimes in the silent night
Your eyes thrill through me with their tender light,
How oft I hear your voice when others speak,
How you 'mid other forms I seek -
Oh, love more real than though such dreams were true
If you but knew.

Could you but guess
How you alone make all my happiness,
How I am more than willing for your sake
To stand alone, give all and nothing take,
Nor chafe to think you bound while I am free,
Quite free, till death, to love you silently,
Could you but guess.

-Author unknown

No Place Like Home...

...unless you count the comfort of Daddy's big strong arms.

Not seeing his dad every night, I can tell the Doodle misses Jim when he's gone. He rolls over and pats the bed where his dad sleeps and looks at me sometimes like he doesn't know if he's coming back.

When Jim came home on Friday night from being gone all week and rang the doorbell, the Doodle ran to the door thinking it was one of his autism appointments, when he saw it was his Dad, he let out a high pitch scream of excitement, ran back toward me and started flapping his arms like he was trying to fly. Jim opened the door and the Doodle ran straight into his arms.

My Small Claims Court Appeal Ruling...

Two posts in one day? Yes, Virginia, there is a Santa Claus.

Just as I had suspected; ruling for the Plaintiff. (Dr. Julie Griffith, San Rafael, CA)

Just got our ruling in the mail today and the Judge has ordered me to pay the unethical Dr. Julie Griffith, San Rafael, CA the sum of $1260. Not a surprise since he made it really clear this court date wasn't about who lied, misdiagnosed, over prescribed medicine, showed poor ethical behavior, had ridiculous billing practices; was insane, shady, grandiose, mislead patients, money-grubbing, fraudulent, and gave other DAN! Doctors a bad name.

The judge did not include a written reason or decision which kind of bums me out. He said nothing. No explanation at all. He must have seen some dishonesty or delusion in her character because he was nice enough to knock $500 off my bill. Gee. Thanks. I guess he felt like maybe alarming the parent of a two year old unnecessarily and diagnosing her son with a severe brain malformation and then talking about an untrue diagnosis of Dandy Walker for 2 hours might seem a little excessive and calculating; even on the brilliant Dr. Julie Griffith's clock. (insert big court room outburst sigh here)

Will I pay her? Yes. But only because of this terrific legal binding court order to do so. But unfortunately, since all of my money is tied up in change and we have real doctor bills received from real doctors who provide actual medical care instead of taking the patient on a trip to Never-Never Fantasy Land, she is going to have to accept payments in the form of maybe $10 a month for 129 months or so. What's 10 years or so between adversaries?

The only good thing from all of this is that I now have even more ammunition to take this doctor down...with the former patients that have since come forward and because we now have PROOF of Dr. Julie Griffith's misconduct to take to a very different venue so that she can be held accountable for being the FRAUD that she is.

The way this Doctor has behaved will surely raise some eyebrows at the State Medical Board and also at the Federal level.

Still waiting for a silver lining on this one. I guess it has taught me not to be so trusting of someone just because they have a degree on their wall and claim to be a Doctor. Next time I will thoroughly check out a physician before I make an appointment. Next time I will pay better attention to the RED FLAGS such as how many reputable doctors are literally working out of their living room and refusing to bill insurance. Hmmmm.

It's clear that Dr. Julie Griffith, San Rafael, CA is card-carrying member of the Liar's Club...Stay tuned. I'm in this one for the long haul. I will take this as far as I can until I can get some justice.

Don't Blink, You Might Miss It

Amazing that the Doodle laid on the floor with Jimmy (and tolerated him) while they watched cartoons. How you know he tolerated him for a period of time is because I had to find the camera, put batteries in it, delete my memory card and then snap the picture.

It's a mood thing with the Doodle. Hit or miss. This was definitely a "hit" and made my weekend.

Jimmy's 1st Game!

Tonight was Jimmy's first real game! He was so great out there. He got to realize what a workout basketball really is, up and down a big long full size court. This was not just messing around playing Horse or Thunder with some buddies at school. It was intense.

Did they win? Nope. But he was happy to have played just the same.

It was a pretty close game, 30-35.

I still think a big bummer is the fact that they don't practice with each other during the week.

It's just Friday night court time, so I hope the spirit of teamwork comes into play.

I'm so proud of Jimmy for putting himself out there and being

kind of the odd man out since he's never played before.

So Very Random

If you were a fly on the wall at my house, here are some things you might have heard me say this week:

1. Clap all you want you are getting NO MORE Doritos.

2. Get over here you little maniac, would you like to put your hand in my shirt?

3. I'll give you $5.00 if you go turn the light off for mommy upstairs.

4. I don't even want to know what the creator of Yo Gabba Gabba was thinking about when he came up with the one eyed orange guy with nubbs. (ref. picture above)

5. Well, I won't be drinking out of that glass ever again.

6. Corn chips have never counted as a serving of vegetables.

7. If he comes back, he comes back. I'm not going to worry about it anymore.

8. You remember how to call 911 right?

9. Who pooped?

10. You want me to call it what?

11. If you don't answer it, maybe they'll just go away.

12. How did something that big fit inside your nose?

13. Because I'm the mom that's why.

14. I happen to know that complete-ish is definitely NOT a word.

15. Sorry, there is no way I could have known that was going to happen.

16. It's not nice to call someone insane. Call them mentally hilarious instead.

17. If wishes were horses, all beggars would ride.

18. Somethings are better saved for your Dad.

19. Get off of your brother he's finally being good right now.

20. Walmart is freakishly unbelievable and I'm not just talking about their prices.

You Want Me To Call It What?

Today we had our first appointment with the Doodle's new Behaviorist. But the paranoia in me kept me thinking he was taking notes on ME and not really getting what I was saying about the Doodle.

He was nice enough; although, I'm seeing a pattern with these people we go to for help and guidance dealing with autism and it's aftermath. Why do these specialists feel the need to take up the majority of the appointment with how freaking awesome they are? Why the sales pitch? What I wanted to say was, "Look buddy, you already have the job you're in my house remember? Now stop talking about yourself for five minutes and help us. I don't need to hear about all of the families with completely different situations and issues that you have helped since you first decided to become a Behaviorist in 1975."

Those of you who read my blog or know me, know me as being a little oh, I don't know, confrontational...but I kept most of my debating to a minimum. The only thing he said that I really did not understand or agree with was my using the term TIME OUT.

When the Doodle acts up and is in one of his freak outs or purposely throws something on the floor, he gets a time out in the baby swing he barely fits into. But it is a place that he understands and can't get up from. It serves it's purpose because it calms him. So we had a little discussion on what I call it.

He told me not to call it a time out but when I asked him he couldn't exactly tell me why. He said it was to redirect and not punish and I said no, it's a punishment with some redirection sprinkled in there. It was supposed to be a consequence when he did something unacceptable. i.e.: You do THIS, you get THAT.

So he told me I should call it something else, anything else. He said it didn't even need to make sense, it could be silly. I thought to myself, you mean, silly like this conversation I'm having with you?

So I said, "How about BANANA?" And he said, "That would be fine." And then I said but if it's OK to call the "consequence" anything at all like your suggesting, what's wrong with TIME OUT? He already knows that one. I said, "I'm going to feel a little foolish trying to tell him to go have a banana when he throws a tantrum and I know that he knows what a banana really is. And, he knows that I know that he knows what a banana is."

He gave me a puzzled look.

So I finished my thought with, "I don't know that I will feel very good confusing my already confused autistic child. We have bigger things to figure out besides what to call a time out."

He just looked at me for a minute and then asked me for another cup of coffee.

My Eyes

The following was sent to me in an email and I've always saved it.

There was a blind girl who hated herself because she was blind.She hated everyone, except her loving boyfriend...He was always there for her.She told her boyfriend, 'If I could only see the world, I will marry you.'
One day, someone donated a pair of eyes to her.When the bandages came off, she was able to see everything, including herBoyfriend.
He asked her,'Now that you can see the world, will you marry me?'The girl looked at her boyfriend and saw that he was blind.The sight of his closed eyelids shocked her.She hadn't expected That.The thought of looking at them the rest of her life led her to refuse to marry him.
Her boyfriend left in tears and days later wrote a note to her saying:'Take good care of your eyes, my dear, for before they were yours, they were my eyes.'
This is how the human brain often works when our status changes.Only a very few remember what life was like before,and who was always by their side in the most painful situations.Life is a Gift.
Today before you say an unkind word - Think of someone who can't Speak..
Before you complain about the taste of your food - Think of someonewho has nothing to eat..
Before you complain about your husband or wife - Think of someonewho's crying out to GOD for a companion..
Today before you complain about your life - Think of someone who wenttoo early to heaven..
Before whining about the distance you drive - Think of someone whowalks the same distance with their feet.
And when you are tired and complain about your job - Think of theunemployed, the disabled, the homeless and those who Wish they had your job.
And when depressing thoughts seem to get you down -

Put a smile on your face and be grateful because you're alive and still here.

Diet Update

If money were no object, would I get some liposuction? Absolutely. Would I have my boobs put back where they used to be? Yes. Would I have a tummy tuck? Probably. I still can't understand why you can't get a tummy tuck and C-section at the same time. Just wait until a Doctor figures out a way to do THAT! Think about it, you already have the scar.

Because inquiring minds want to know...Am I still on my diet? Yes. Do I still eat? YES...I just ate my will power tonight in the form of an ice cream bar. This ice cream bar was, however, at least a Skinny Cow ice cream bar. So the guilt isn't as crushing as usual. But I did just eat it and it's 10:25 pm so that probably wasn't a wise choice considering I'm trying to lose weight.

Have I lost any weight? Well, it's hard to say. Now I have my two scales sitting side by side in the bathroom. I still weigh myself twice a day, naked in the morning and naked in the night. I do my best to avoid the mirrors but I am weighing a different weight on each scale by about 3 pounds. If you take the amount I weighed when I first started this diet I have lost 7 pounds on the old black scale, if I get on the new white scale then I have lost 10 pounds; so for obvious reasons I like the white scale better. If I want to lose even more weight, I just go over to my mom's house and use her scale. There, I've lost 12 pounds. Are you confused yet? Me too.

The problem is the weight isn't coming off very fast and being the control freak that I am, I like things to happen right away. I can remember dieting in my twenties and dropping 10 pounds in 6 days. Currently it is taking me over a month and a half to lose seven pounds, or ten pounds. Kind of frustrating.

I'm by no means starving myself but I am making better food choices. I'm eating a lot of salads and no creamy dressings, the dressings I have are made with olive oil and don't have more than 4 grams of fat per serving. I'm eating leaner meats and my snacking is reasonable. If I'm craving something sweet, I eat a weight watchers cake or 100 calorie bag of some kind of snacky thing. I drink my coffee in the morning with a Luna bar and low fat yogurt and for lunch I will have a Lean Cuisine or a bowl of cereal. So I don't think the weight is not coming off because my body is in starvation shock hanging on to my fatness because it thinks something weird is going on. I have a lot of fat to keep my body going for a very long time; I don't think it's worried about starving any time soon.

I went and walked tonight with my beautiful friend, Michelle. It wasn't my usual 40 minute 1 mile "stroll" with the kids on the flat part near our house where my heart rate only elevates when I'm trying to keep the Doodle from taking off into oncoming traffic. This was a real workout in a very hilly neighborhood and did I mention, there were lots of hills?

So walking with a friend, I can honestly say, is like not really exercising at all because even though I got pretty winded and thought about calling 911, we were talking the whole time and catching up so it didn't feel so much like exercise. An hour + walk went by lickity split. I've decided in order for a walk to feel like it's not exercise, you need to 1.) walk with someone you like and 2.) walk with someone you like.

I love that I exercised without it really feeling like exercise. It's almost like I got away with something, like I cheated exercise...except I will surely feel it tomorrow.

The Pink Elephant

"Misfortune shows those who are not really friends."
- Aristotle

Having a child with special needs I am often faced with reflecting on who my true friends are. Coincidentally, the invitations stopped rolling in around the same time as the diagnosis came in.

It is understandable and makes perfect sense. Having an autistic child, especially a non-verbal child in a helmet having seizures with bad behavior, tends to bring down the mood of most celebrations.

Jenny McCarthy says, "...when you get sick with a disease or cancer, people visit you and bring you soup...when you have a child with autism, people avoid you in grocery stores."

It could be my own insecure paranoia but taking the Doodle to a party is like showing up with a Pink Elephant (in the room)...except, I'm usually chasing my pink elephant around because he is out of control, stemming or OCDing and way over-stimulated and then no one is having fun. Especially me.

My pink elephant has a sixth sense. He knows exactly when and how to push the right buttons, yet knows I cannot react the same way to him as I can when we are at HOME. He knows that the "Time Out Swing" is no where in sight and takes that as a full opportunity to really act out. He can completely read my mood and he feeds off the rise in my blood pressure. I've left several parties in tears, asking myself why I bothered to go because it is a cruel reminder of how much my life has really changed. We're no longer normal; we're the entertainment.

It's easier to stay home. I've got the Jerry Seinfeld rolodex of excuses. And, sadly, it takes tragic and life-altering events in life to really see who your true friends are.

I get it about parties and not knowing what to say about the kid in the helmet or how awkward it might be to try to pretend not to notice, yet not be able to break the stare out of morbid curiosity. Why do I know? Because before I had a child with special needs, I was thatt clueless person. I was that person so very grateful to not have to deal with that. So please consider this post anything but righteous. It's just the way it is.

But what about reaching out to a friend who is having a hard time? Does my child with autism now define me? Is that all people see now when they look at me? I'm a package deal with my challenging 44 pound side-kick.

Besides the lack of invites, my phone isn't exactly ringing either. I'm going to take some responsibility in this because that was the intention of this Blog. I created this blog for people who wanted an update on the Doodle's seizure disorder and autism diagnosis because I was too tired and upset to talk about it all day long. I created this blog for selfish reasons, so that I did not have to talk to people and tell the same painful story over and over and over. It was my first step at sheltering myself from my "friends" and even family.

But the friends who talk about me and our situation behind my back because they are too cowardly to say things to me directly....the friend who happens to be a NURSE who never once reached out during our many hospital stays at the very hospital she worked in, the friend who was constantly putting her child who is the same age as the Doodle on the phone so that I could hear her speak in full sentences when my son can't speak just to make me feel badly. Those aren't friends and it took until now to realize that.

I do have a few true friends. I proudly count them on one hand minus three fingers.

Already Living a Courageous Life

Oh but what's ahead for this little man. One thing is for sure. He is braver than I have ever had to be.

Life is hard.

Life is hard for "normal" people and the challenges are tough enough. Imagine what it must be like for someone with special needs.

"These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world." - John 16:33

Different Directions

Ever look at two things that seem so close but they are going in completely different directions?

Maybe a friendship? Maybe your marriage? Maybe your children?

But wait, it's not supposed to be this way. This wasn't how you'd been imagining it in your dreams. You'd think these things are so closely intertwined that they would at least intersect somewhere?

That's how I feel about my children.

They're brothers.

They share the same blood line.

They have the same color hair.

They're both tall like their dad.

They're both stubborn like their mom.

Same family, same house. But they are at completely different stages in their lives. Sometimes I look at them and can't believe the differences. They're opposites really and it becomes so clear to me.

I know there are obvious differences...age alone would explain that because they don't have much in common. But with having one "normal" child and one autistic child there are even more differences; it goes way beyond age and interests. You can't even imagine them. There are so many things Jimmy cannot begin to understand about the Doodle...and likewise.

The difference is Jimmy WANTS to understand and desperately tries and tries; the Doodle may never have that same interest or desire with Jimmy. Jimmy can put out a lot of effort to engage the Doodle yet the Doodle only engages with him on HIS terms. There are times where the Doodle will initiate contact and I know that he loves his big brother, but it's not a big priority for him...like say, a bag of Doritos or the channel changer.

It's kind of the same with the new dog. The Doodle could care less about the dog and refuses to even make eye contact with him.

I watch Jimmy try so very hard to be close to the Doodle and to be seen by him; it's rare that he gets much back. That must be hard. I'm hoping that will improve with age; that the Doodle will be more tolerant and seek his big brother's attention and love.

I hope that Jimmy doesn't give up on him.

Losing the Battle to Win the War

The more time I spend listening to the narcissistic Dr. Julie Griffith of San Rafael, CA speak the more I realize how very crazy and calculating she is. Professional medical and ethical practices are completely lost on her.

She lied. Repeatedly.
She perjured herself.
She changed her story from the last court appearance.
She said I had cognitive difficulties.
She said she provided "medical care".
She said she dismissed me...when she was fired on April 15th.
She said she had more training than our other Neurologist who disagreed with her.

Since we lost our Small Claims Court case last time with her, and since she sent me a threatening letter, I decided to appeal it. It's supposed to be a "do-over". The first Judge we had only took into consideration my breech of contract since I agreed to pay her $500 per hour and we were there for 3 hours...end of story. She didn't take into consideration any of Dr. Griffith's misconduct and negligence and behavior as to WHY I stopped payment in the first place.

This time, I got to talk more and I focused on the fact that she never gave the Doodle an actual "physical exam" as it is stated four times in the same "contract" and welcome package where her fees are located that I signed in good faith prior to the appointment. I also provided a pretty colorful graph that the Judge barely looked at where I broke down the 3 hour appointment in a percentage pie chart so that you could see at a glance how much time was spent talking about the misdiagnosis of Dandy Walker...38% of the appointment. I tried to make it clear that the only reason I stayed for 3 hours is because she had just told me my son had a severe and life threatening brain malformation--Done masterfully only as a true con-artist might do.

Since Dr. Griffith's section of vitals statistics, weight, temperature, measurements etc. was left blank in her report to me proves that she never did a physical on the Doodle. She gave him a visual once over and that was it. The Doodle was in the exam room for 10 minutes max with no standard physical exam. Therefore, Dr. Griffith was in breech of her very own contract.

I got to tell my story again but the Judge pretty much stated he is not going to determine or consider any malpractice or misconduct or ethics in this case. That it was strictly about the 3 hours @ $500 per hour. Was I there? Did I know she was $500per hour? Did I sign the document? Yes. Yes. And, Yes. But, I disputed the charge with extenuating circumstances after the fact because of her actions. It wasn't until after the appointment that I realized she had misdiagnosed him, over prescribed him medication and then refused to come to the phone unless I provide her with a credit card when the Doodle was having the new head-drop seizures from the medicine SHE PRESCRIBED HIM.

I had a sworn declaration from a former Dr. Griffith patient who had similar complaints and was charging her $500 per hour to track a fed ex package...she complained and wrote Dr. Griffith and a statement for the court and the Judge refused to see it. Even though it shows a distinct pattern in Dr. Griffith's unethical billing practices.

So if the Judge won't take into account Dr. Griffith's intentional and disingenuous methods of alarming parents with sick children so that they will stay longer in her office, in my case--3 hours...and trick them into making follow up appointments to discuss her wild ideas, opinions and diagnosis then I have Lost once again and will have to pay her for her purposeful negligence and my waste of time. It has to be purposeful because no doctor could be that wrong or stupid about so many things in one consultation.

I didn't even get to the part where since our first (and last) consultation with Dr. Julie Griffith, the Doodle has $34,000 in REAL medical bills for actual treatment. And it is because of her over prescribing him antiseizure medication which triggered the head drop seizures which is why he now requires a nurse. I didn't get to mention that the Doodle has racked up $48,000 in nursing bills since our appointment with Dr. Griffith. Those facts, would not be relevant...

I will be following up with the California Medical Board and the Marin County District Attorney's Consumer Fraud Department just the same. I will not let this rest and some new things came to light today during court that will clearly get us some kind of justice.

My first favorite part of court today was when Dr. Griffith asked the Judge if she could triple the amount of the charge like you get to do if someone bounces a check to you...Of course the Judge told her NO. It doesn't work that way with credit cards...the same law does not apply and she would have had to ask for that amount in her original complaint...if that does not prove what a money grubbing "doctor" she is and speak to her character, I don't know what does.

My second favorite part of court today was when she asked the Judge if he could have me remove my report of her at www.ripoffreport.com and he told her NO. To read the report you can cut and paste this link into your browser:

http://www.ripoffreport.com/doctors/dr-julie-griffith/dr-julie-griffith-www-mybrain-7c42d.htm

The Judge will send us his decision next week. So for now I will wait to hear his decision with no unrealistic expectations. I'm really lucky to have had the support of my mom and Jerry at my side during all of these court appearances. I'd like to thank them for being there for me even knowing we probably didn't stand a chance.

My Blind Spot

Blind spots are all around us...in the vehicles we drive, we don't always see things when they are right there next to us and the same is true in life.

All it takes is one moment for me to see or read something so very tragic and I feel foolish for ever complaining about the most trivial things or letting the stupidest things upset me.

Because there is always someone worse off than us.

I came across this blog today and besides bringing me to my knees, it made me realize that even though I have a 3 year old with autism and severe epilepsy and my pants don't fit and my husband gives me the wrong card for a holiday, things could be so much worse.

If you feel compelled, go to Penny's website and donate or leave a nice comment for her family; whatever feels right for you.

Happiest

 

Besides changing the channels and eating Doritos the Doodle is happiest playing outside. Sometimes he plays like a true "normal" little boy might play and sometimes I forget that he's autistic. I forget that he can't speak. I forget that he has severe sensory issues. I forget that he's not potty trained and that he still drinks out of a bottle. I forget how difficult he can be. Then, every once in a while, I catch a glimpse of myself in the reflection of his shiny black helmet and it makes me remember...I have a very sick little boy with epilepsy; and I think to my self, who really cares about the autism? The autism is so secondary now. His health is what is really important, not his development or speech or behavior or quirks. I can live with and manage those. We will get by. It's the seizures I have the hardest time with.

When I look at this little man, I see a little boy with so much promise and potential and I remember how much he has taught me about acceptance.

Contributing to the Delequency (Edited)

...of our minor. Oh how I love it when the Doodle learns something new and takes an interest in something other than Doritos but then I ask ourselves...why?

Why did we teach him THAT? Have we learned nothing about living with autism?

Because when the Doodle learns something new, it's OCD time. Jim, oh my dear Jim, has really done it this time. He has taught the Doodle to operate the remote control for the TV. Now, we cannot watch any program, his or ours, without having to change the channel and press the pause button over and over and over and over. We haven't taken the remote away cold turkey. How could we? That would be just mean. Just look at that face, changing the channel makes him so happy. How can I take something from him that gives him such true pleasure that isn't really hurting anyone? It's just the TV for goodness sakes. I think to myself, self, I need to lighten up. But then I watch something come over him and he gets overstimulating and then no one is enjoying themselves anymore...especially Doodle Bug.

So we have to hide the remote now and while millions of other people across the world are partaking in the glory of the almighty TIVO and fast-forwarding through the commercials or pressing pause to get a snack or take a whiz...we cannot. We have to suffer through television like we did in the old days; pre-DVR.

Besides Jim, I like to blame those foolish British idiots nice looking award winning and talented Australian gentlemen from the Upside Down Show. The entire show they are telling the children to press the pause button and the rewind button and the right side up button--blah blah blah.

It is clear to me now why it is the Doodle's favorite show, it's all about the remote and controlling things.

Basketball Season

Today was a big day for our little 10 year old. Jimmy had a skills assessment/basketball try out for a spring basketball league. This will be the first time he will be playing basketball on a team. He plays basketball at school at recess and plays outside with his dad sometimes but really doesn't know the game very well so I was really proud of him to go and give it his best shot. He's really tall so he's got that going for him.

He was intimidated and I was nervous for the both of us. We've never really watched basketball on T.V. unless you consider High School Musical and the Wild Cats who sing and dance while they play...

So he went. And he did great! All of the other kids that were there were veterans and have played in this league before. They knew each other and were comfortable playing and doing the drills.

8 weekly games start on the 26th and I was really surprised when I asked the Coach what days they would be practicing. Umn NO practices. The kids are supposed to practice on their own and then they will have weekly games on Friday nights. Kind of hard to imagine how you learn teamwork and how a "team" sport is played if you don't get any instruction or practice, but OK.

Jimmy's school doesn't have any kind of team sports, being an elementary school, so he doesn't have an opportunity there. What's even worse is that with the severe financial issues of the California school system, they have canceled Physical Ed (and music and the library and arts). This will be an interesting experience for him. So far, he's only participated in sports that are individually based--motocross, skateboarding and karate. He hated tee-ball when he was five.

Losing Sleep...No, Really.

You know me, I'm always complaining about losing sleep and sleep deprivation and not getting enough sleep. Well, tonight is the night I dread all year long. The night where we spring forward so that we can lose yet one more hour of much needed sleep. I don't know one single person who ever complains about getting too much sleep. I don't know that it's even possible. Because for the as long as I can remember, when all else fails you take a nap.

So now for the next couple of weeks, I will have to argue and rationalize with my brain when I look at a clock to automatically realize that no, it's really one hour earlier. Because who are we kidding? Sure the clock may say it's 7:00 am but we know it's really 6:00 am.

Why don't we set our clocks ahead during the middle of the day on a work-day during the week, like on a Wednesday at say 4:00 pm? No. That would make too much sense and be too good to be true. Why would we want to lose one hour during the work day in our favor? Business owners might disagree...Instead we are robbed by this hour when we need it the most, while we sleep...

Do I care that we get more daylight at night? No. It's not like I'm outside enjoying the daylight. I work all day and then have my motherly chores to do and it doesn't much matter if it's light out or dark; things still need to be done. Jimmy might like it, but it's just going to confuse the Doodle and his routine. Not to mention, I have a hard enough time waking him up at 8:00 am to get ready for preschool...now I will be waking him up at 7:00 am! I feel bad for the teachers and his nurse LuLu at school because he's even harder to handle when he's tired and hasn't slept enough.

I can't wait for Fall so that I can get this damn hour back.

A Special Day Today

Why A Mother Needs Sleep...

This says it all

Daddy's Home! EDITED BY JIM (in the red)

Jim's been working out of town for a few days this week so I've been a single parent. Two kids, two different school start times can be a little bit challenging in the morning when you have three non-morning people.

Jimmy is so happy to have his dad home. AND I'M HAPPY TO BE HOME TOO! Except now that means he doesn't get to sleep with me tonight in his dad's spot and thank goodness because he grinds his teeth and the noise keeps me up all night.

I think how nice for Jim that he got a little mini-vacation....
OH YEAH, GREAT VACATION, WORKING FOUR HOURS AWAY IN FREEZING TEMPERATURES AWAY FROM HOME AND MY FAMILY.

He stayed at a quaint little motel near Yosemite...IT WAS A COMPLETE DIVE.

...had a room and King size bed all to himself with no back-kicking and night terrors from the Doodle...OK, TRUE.

...he got to sleep in because he didn't have to commute anywhere to work...STILL HAD TO GET UP AT 5:00 AM...

...he had free HBO, I DID WATCH SOME BILL MAHER AND ENJOYED IT.

...ate out at night for dinner, IF YOU CALL CARL'S JUNIOR EATING OUT?

...and had a continental breakfast ready each morning, IT WAS RICE KRISPIES AND BAD COFFEE BUT IT DIDN'T MATTER BECAUSE WE HAD TO GET UP TOO EARLY AND GET TO WORK.

...and he had fresh clean sheets and a made bed each day, I SERIOUSLY NEVER NOTICED BECAUSE I WAS TOO TIRED FROM ALL OF THE WORKING!

Most importantly...he got good, solid, sound, uninterrupted R.E.M. sleep. I DIDN'T SLEEP WELL AT ALL...AND THE PILLOWS WERE REALLY HARD.

The Doodle was pretty happy to see him tonight too. I MISS THAT LITTLE MAN WHEN I'M GONE. He loves it when his dad picks him up and rough-houses with him upside down. When he's gone, I miss the way he controls the remote and makes my coffee for me in the morning. I MISS YOU TOO ANGELA, THE WAY YOU CAN EMBELLISH A STORY LIKE NO OTHER IS REALLY SOMETHING.

My Other Son

A haircut and the Honor Roll all in one week...Ok, what's going on? What does he want?

Tonight he came home and did his homework without being asked. He brought home a great report card this week and we couldn't be more proud of him. I love that the Doodle has Jimmy as an example. He's a great big brother to him and he is really protective and kind. I think having a special needs brother has taught Jimmy to be more tolerant and patient. There's a boy in Jimmy's class that gets teased a lot and Jimmy comes home and tells me how it bothers him and that he sticks up for him because the boy isn't very good at standing up for himself.

For a couple of days now he has been pestering me to take him to the bookstore and buy him some new books, he has a favorite author...and actually WANTS to read! For the first time in his life, he likes to read. I'm so happy. So we went to the store and he picked out a couple of books and has been reading ever since. He just reported to me that he is on page 44.

He's got basketball tryouts this Sunday and I know he's really excited about that. He excels at everything he enjoys...heavy emphasis on the "enjoys" part.

I think I'm so consumed with the Doodle and his lack of progress and development that I sometimes forget to acknowledge Jimmy's accomplishments. I expect so much from him and it's not always fair to him. He's had to deal with a lot for a 10 year old and grow up pretty fast, taking care of himself because the Doodle needs so much extra care. I wish I could slow it down and keep him ten for a while longer.

I'm so grateful that I had 7 years of just Jimmy. For seven years he had us both all to himself, he was an only child. I hope he never feels like he was just "my other son".

Just Be

Be the still pool.
Let your face reflect the glory,
the wonder.

Be the dragonfly,
silent but joyful.

Be the bud.
Prepare to blossom.

Be the tree.
Grant shelter.

Be the butterfly.
Accept the riches of the moment.

Be the moth.
Seek the light.

Be the latern.
Guide the lost.

Be the path.
Open the way for another.

Be the wind chime.
Let the breeze blow through you.
Turn the storms into songs.

Be the rain.
Wash away, cleanse, forgive.

Be the grass.
Grow back when you are tred upon.

Be the moss.
Temper your strength with softeness,
with mercy.

Be the soil.
Bear fruit.

Be the gardener.
Create order.

Be the temple.
Let the spirit dwell in you.

Be the seasons.
Welcome change.

Be the moon.
Shine through the darkness.

Be the pebble.
Let time shape and smooth you.

Be the leaf.
Fall gracefully when your time comes
to let go.

Trust in the circle.
To end is to begin.

From the book, In A Japanese Garden, Charmaine Aserappa

I Heart Sundays

I had a lazy carefree day today with no place to be and nothing at all to do. It felt strange. I got to sleep in, enjoy my morning coffee, read the paper in bed, watch cartoons, go for a walk with the Doodle and the flea bag and still have time for a nap and some scrapbooking! The weather was absolutely perfect to be outside enjoying the sun.

I never once even got in my car. No traffic. No stress. My day was great and I didn't even buy anything.

Jim and Jimmy went riding today so it was just the Doodle and I. I love it when it's just the Doodle Bug and I. He's getting easier in some ways, when he's in his comfort zone. He's more independent and his temperament is getting better. The fact that I managed to scrapbook 10 pages, read and watch a movie is amazing.

I watched a great movie with Robert DeNiro called Everyone's Fine. I cried my eyes out. Then I made a tasty Lasagna dinner and we watched the Academy Awards tonight...why can't all Sundays be this easy and relaxing? This weekend went by way too fast. I'm going to put this on my To Do list, to take at least one day a week and unplug and recharge my battery I can really tell a difference in my mood today. I don't think I screamed once.

Remember, dreams can't come true if you don't have any...

Reality

13.5 hours away today. I got a taste of what it feels like to commute again and really work away from home and my kids all day long. My boss had an event today at a hotel in Marin that I had to work. It was a really long day and when I'm away like that, I really miss the the boys.

Then Jim texted me a picture of Jimmy and his new hair cut and for some strange reason I got all emotional and it made me cry. I couldn't stop crying. I can't believe how old he looks now, he's definitely growing up and there's nothing I can do about it.

I wish I could freeze time.

All I could think about today was how I don't know how I could work full time--and commute outside of the house. I've been really lucky and really spoiled being able to work from home. This morning I had to get up at 6:00 am and take a shower and put on real clothes...pants with a zipper; not elastic sweats or jammies. I had to put on a bra on and I couldn't wear my ball cap.

I know, someone call me a whambulance! Poor me. I'm speaking Whinese...

I guess my point is that it is soooooo good to be HOME with my family and I have one more day left in this weekend so I'm pretty happy about that. I even missed the ugly little flea infested dog.

Fleas!

All I can say is Ugh. Now what? I'm ready to get rid of both of the animals now. In the old days I would just fog the house, but now with the Doodle; I'm a freak about chemicals.

I'm the only one getting bit. I have always had a bad reaction to insect bites: spiders, fleas, and mosquito's. I think I'm allergic.

It's not even flea season...I don't get it.

The dog was treated with Frontline when we picked him up, maybe I washed it off with the couple of baths I gave him??? But I used flea soap.

Then, Coco, the cat, who has also been treated is completely covered in them. We gave her a flea bath tonight and I swear there was at least 50 fleas on her. I think she's the culprit. She hated the bath. And I hated giving it to her; I especially hate the way fur sticks to my tongue...just kidding.

But now I wonder if my whole house is infested?

I called an Avon lady to see if I can get myself some Skin So Soft lotion and bath oil, I heard fleas don't like it...I also heard I should put some Eucalyptus around the house. I went to the health food store and bought some non-toxic food grade Diatomaceous Earth which is a fine white powder you sprinkle in your carpet. Not sure exactly what it does, somehow it sucks the moisture out of the fleas environment and body and they can't live. Then you vacuum it up.

So if you have any super ideas for natural non-toxic flea repellent I would be thrilled to hear about them before I take both pets for a ride.

Spinning

I went to my first spinning class today. That's me in the back row barely able to stand up and pedal because I forgot how to exercise and ride a bike. It's been that long.

I told you I was serious this time though. I've got to lose some weight. I've given up most everything that has been getting me through the worst of my days...dangerous amounts of chocolate, Starbucks delicacies, fast food, pasta, bread. Have I lost my mind?

I'd give up sugar altogether but who am I kidding?

When I handed the girl at the front desk at the gym my membership card she looked at me with the strangest look, like maybe she had heard about me. in one of her employee trainings...like I was some kind of a legend. Angela, the girl that has been paying monthly dues for a gym membership but hasn't been in two years. That's some kind of record. I thought bells and buzzers were going to go off and confetti and balloons were going to drop from the ceiling upon my check in.

But I went to the gym today and broke a sweat. And thank goodness I didn't run into anyone I knew. The class was really hard and even harder than that was the seat. I've gone on bike rides before and never has my butt hurt so badly; maybe because I weigh so much more now. The class was physically painful and there was no clock in the room and I don't wear a watch so I had no idea how long 45 minutes took to go by but it seemed like 6 hours. Next time, I hope to go with someone. My friend Rosie is a frequent "spinner"; maybe I can get some motivation or tips from her. They say you're more likely to work out if you have a partner or someone to push you.

Will I go back? Absolutely. I need to get in shape. I'm tired of feeling miserable and avoiding mirrors. Next time I will wear some serious padding in my pants, maybe one of the Doodle's diapers and I won't tie my shoe laces so tight that I get a foot cramp.

This weight loss thing is not easy and I'm the type of person who needs to see results right away or I get discouraged and I'll go eat a baker's dozen of donuts to show "them". So I'm hoping if I can kick start my metabolism with a few work outs and continue to be careful with what I eat I will see results and that will be enough to motivate me to keep going. It's been almost 3 weeks of some serious food discipline and I'm still not losing the weight I thought I would by now.

The new scale isn't helping either. I think it should go back.

Practicing on the Potty

Not a lot going on in the potty training department...The Doodle used to scream when we would put him near or on the potty. We're to the point now where he will sit calmly and laugh and not freak out.

He still doesn't like it to have his pants off. It must be the cold plastic hitting his warm bottom. I might have to invest in a seat warmer.

He's got a Dora the Explorer and Blue's Clues potty insert and also the kind of little potty chair that sits on the ground.

I have books that show and talk about potty training but he's not interested. I even have a potty training video but unless it's one of the Wonder Pets or the Backyardigans he's probably not going to be interested in watching it.

Next week I hope to get him to take his pants off and get used to that.

Baby steps.

A Doodle Good Day

A good night's sleep.

We blew each other kisses goodbye while getting on the school bus.

A super day at school.

No seizures!

A good nap.

A great appointment with Cory, one of the Autism Shape Aids.

A good poop.

Some great new noises were made on purpose.

Great behavior today (for the most part)...there's always room for improvement.

NO OCDing about chips or the channel changer.

NO time outs.

A nice sunny afternoon to play outside and be a little boy.

A nice dinner together with no throwing of the dishes.

A really goofy episode of the Upside Down Show played that made him LAUGH. Out loud.

Today was a really GOOD day.

I hope we have another one of these days tomorrow.

The Real Reason

Day 11 of my diet and it doesn't seem to get any easier. Besides my love of all things sweet and salty and sweet and salty together, I have a list of favorite foods I can't get enough of. Foods that seem to call to me throughout the day in various voices. It starts around lunch time and doesn't stop until I'm asleep.

I'm now trying to take things a little more seriously with the attitude that I am in control of my weight based on what I decide to eat. It's all about my poor eating choices. Would I rather have Ranch dressing on my salad? Absolutely. Would I rather have a Togos #29 which is chicken salad and a bag of chips and a soda or a bowl of Special K cereal with fat free milk? I need to learn to say NO and not grant myself every whim imaginable. I used to think, well I don't smoke, drink, do drugs, I should be able to eat. It brings me pleasure.

Then I remembered how pleasurable it was to be comfortable in my own body and not disgust myself. Besides, being fat makes me feel bad which makes me irritable and cranky. And since I'm not getting any younger, I worry about things like heart disease, high cholesterol, diabetes which all run in my family. So as a responsible parent, I feel like I need to do it for my kids too.

It's hard enough to lose weight but when you have an uncooperative scale it makes it even tougher. A couple of years ago I bought a new scale. It seemed ok, it wasn't like I was weighing myself every day or anything, I'd actually avoid the scale the bigger I got.

So now that I'm dieting. Again. I've been weighing myself every day. All this sacrifice I want to see if it is even possible for me to lose weight at this age and size.

It's coming off but really slowwwwwwwwly. So I would weigh myself but I was always weighing consistently the same amount. It wasn't showing any gain or loss. I thought I was just maintaining my weight but never really sure.

So I bought a new scale today. I tried a whole bunch off them in the store first and can you guess which one I went with? Right. The one that gave me the best weight.

So yay! All of a sudden I lost 8 pounds.

You should also know I put the scale in the most perfect place...in front of the refrigerator.