Doodle Bug Chronicles

Christmas to Me

2011-12-25T22:14:00.000-08:00

In todays' day and time,

it's easy to lose sight,

of the true meaning of Christmas

and one special night.

When we go shopping,

We say "How much will it cost?"

Then the true meaning of Christmas,

Somehow becomes lost.

Amidst the tinsel, glitter

And ribbons of gold,

We forget about the child,

born on a night so cold.

The children look for Santa

In his big, red sleigh

Never thinking of the child

Whose bed was made of hay.

In reality,

When we look into the night sky,

We don't see a sleigh

But a star, burning bright and high.

A faithful reminder,

Of that night so long ago,

And of the child we call Jesus,

Whose love, the world would know.

Merry Christmas to You

from the Doodle and his family

Nightmare on McDonald Avenue

2011-10-31T21:55:00.000-07:00

You've heard of Nightmare on Elm Street right? Well taking the Doodle trick-or-treating turned out to be a weird, twisted sequel I'd like to call "Nightmare on McDonald Avenue".

No patience.
No parking.
Too many people.
A forgotten cell phone.
And a crabby Doodle dressed as a Fireman.

So after getting dropped off by a frustrated husband because he couldn't find a place to park--for a night of pure terror and chaos in the streets of the McDonald area with thousands of people pushing their way around the neighborhood, standing in line after line at house after house to get the token piece of candy, I was ready for a Xanex.

Oh but the Candy. The Doodle doesn't even eat candy and could care less about it. Had they been passing out chips and salsa the night may have taken a turn for the better but he did not understand the concept of walking door to door to get something he doesn't care two craps about dropped into his Thomas the Train bucket.

He liked walking to the door, but he expected to stay awhile - maybe get invited in for a snack of Doritos and a turn at their universal remote. He didn't like walking up to the door and then having to leave. He cried at each house. He was very disapointed.

So we left after 5 houses. But now Jim was gone with the car since he couldn't find parking and the plan was I was supposed to call him to come back and pick us up. But, with no cell phone--it became a true nightmare. Did you know they don't have pay phones anymore? Not like they used to anyway. We walked a few blocks over to the Market and they almost laughed at me when I asked where the pay phone was....By now the Doodle was ready to go home. And I can't let go of his hand for one second because he would bolt. So they felt sorry for me and let me use their phone to call Jim.

We waited for what seemed like an eternity for Jim to pick us up in front of the market. And we chalked this Halloween night up to a huge learning experience as I binged on the candy from the Thomas bucket on the way home and thought about how the Jehovah Witness people are on to something with regard to not celebrating Halloween. Sometimes I kick myself for even trying...then I look over at my giant 12 year old and think about how this must really suck for him. He could have been trick or treating with his friends in his weird Coach Frank tennis suit costume that no one could figure out.

Autism is lonely. But any holiday or special occasion really reminds me of how lonely and cruel it truly is.

Canine Companion

2011-10-06T13:11:00.000-07:00

There's been a lot of talk about dogs and their ability to detect seizures in our world of Eplilepsy...they say it's possible but not always guaranteed. Either the dog can be trained to recognize a convulsion or grand mal seizure and bark to get help--or some dogs are so in-tune with their person that they can detect the seizure as it is coming on or before it has actually occurred from their sixth sense and ability to sense the chemical/electromagnetic reaction in the brain of the person having the seizure. Either way, we have been on a list to receive a special Canine Companion, but since there are no guarantees on what the dog can or can't do, I didn't want the huge expense of buying a Canine Companion, so we were on a list for a "release" dog--a former Canine Companion dog who has been trained who may have been released for various reasons.

We got really lucky--and were give the opportunity to adopt Jaba, an 8 year old black lab/golden retriever mix. He is the absolute sweetest dog I have ever been around and is super gentle with the Doodle. He is well behaved, knows almost 100 commands, potty trained, etc. He loves to cuddle and is already a huge part of our family. The Doodle actually is engaged by him and loves to throw his toy. The Doodle also likes Jaba's dog bed for some reason and likes to hang out and watch tv in there....

Jimmy loves him too and has been taking really good care of him. Even big Jim is a fan....as skeptical as he was at first to try another dog.

Jaba was released and retired because his disabled owner that he had for years thought she was feeding him and giving him water but was not...and he got really sick and lost over 20 pounds. The Canine Companion people took him back, nursed him back to health and retired him from service.

Jaba is the perfect dog for us....almost too good to be true.

Through My Eyes by Scott James

2011-09-10T21:55:00.000-07:00

My new favorite and inspiring video/song. This song is sung by a young man with Aspergers--and has been widely recognized in "our" community. The Autism Community. Interesting to hear, from someone on the Autism Spectrum, what it might feel like to be different.

http://youtu.be/UGCrzmJfwcE

'Through My Eyes' - Lyrics

See the world through my eyes

It changes shape and it changes size

It's not quite the world you see

If you could find a way to look around inside my mind

Maybe you would understand me

-Chorus-

I'm not blind, but I can't always see

I'm not deaf, but things can sound strange to me

I'm not trapped, but it's hard to feel free

Imagine what it's like to be me

It's hard for me to try to think things through or talk like you

Everything can be a blur sometimes

But if you walk along beside me, hold my hand and guide me

Together any mountain we can climb

(Repeat Chorus)

I'm dreaming of my future and it's brighter than you know

I'll get there on a different road when I am ready to go

I don't need pity, I don't need tears

I just need someone to help me understand my fears

Tell me you believe in me, let me know that i'm OK

Help me feel safe in the world, and I will find my way

(Repeat Chorus)

Imagine what it's like

Imagine seeing the world Through My Eyes

(Lyrics by Valerie Foley, Music by Fiona Johnson, Video by Phil 'Putnam' Spencer)

Wiped Out

2011-08-31T19:04:00.000-07:00

This is what a six hour day of Kindergarten does to the Doodle.

It's called our 6:30pm Nap.

Open House Night

2011-08-26T23:05:00.000-07:00

Let's see...not sure how to quite say this one but the Office of Education is all about providing special needs kids with an education in the "least restrictive" environment. The goal and the message is to mainstream them with the general population (aka: the normal kids). Yet, it seems to me they go out of their way to do things that would make the "special" kid stand out and, perhaps, feel alienated by things like making them ride on short buses, sticking them out in trailers on the back side of the school away from the other classrooms and giving them different recess and lunch times away from the other Kindergartners.

How is this mainstreaming my child? And whoever said I wanted my child mainstreamed? The Office of Education was the one that gave me a hard time when I told them I wanted to put the Doodle into a private school for autistic children only. I was told over and over what a bad idea that was because he would be missing out and not in "the least restrictive environment".

My point is stop telling me that is what you are doing and then doing something completely different.

I arrived at the Doodle's new Special Education Kindergarten Class and the first thing I noticed was that they had a big sign on the door that said "SPECIAL EDUCATION". This wasn't a handwritten sign just for open house night for the parents who might not otherwise have a hard time finding it--it is a permanent sign on the classroom alerting everyone that this is definitely the special ed classroom for the special kids. Because we wouldn't want them getting mixed up for a minute and thinking they're in a real classroom for regular kids. We need to label them and the classroom door.

As if I didn't know before I entered the classroom that I have a special boy in a special class. Thank goodness for that special sign on the door.

To Sleep or Not to Sleep; That is the Question

2011-08-20T18:18:00.000-07:00

"Twilight"

Oh how I love my sleep and for me that is the irony of being the Doodle’s mom.

Seriously, I have not had a good night sleep since before the Doodle was born. The last trimester of pregnancy I was so uncomfortable and had to pee so much that solid, uninterrupted sleep was not in my forecast. Then he was born. And he was never a good sleeper. He would wake himself up all night long with these weird-falling-bad-dreams and startle himself awake. I couldn’t wait for him to grow into becoming a good sleeper. That never happened. Just to get a few hours of sleep I allowed him to sleep with us. Because God forbid I moved him or even sneezed, he would wake up and be awake for hours, crying.

His entire infant life he would hold his breath and stop breathing while he slept, for up to 25 seconds. I would shake him to wake him up so that he would start breathing again…then he would gasp for air; which most of the time woke him up. I found out later after several doctors’ appointments that he had severe sleep apnea at just age 2. Part of what they thought caused the sleep apnea were his enlarged tonsils and adenoids. This made sense because he was constantly sick with upper respiratory issues and colds. So again, sleep apnea was interfering with his sleep (and ours).

Then at about age 2 1/2 the seizures started. The big, scary grand mal seizures—if you’ve never seen one it’s about the worst thing you could ever watch someone you love experience. It’s the most awful and helpless feeling I’ve ever had in my life. So the doctors thought maybe the sleep apnea and lack of oxygen to the brain could be a contributing factor to the Doodle’s seizures—so we elected to have his tonsils and adenoids removed immediately; hoping that would solve everything. Nope. While having them removed has helped with him not getting sick so much, the seizures kept on coming. And the sleeping never really got much better either. He’s still a light sleeper who wakes at least 5 times a night.

So to monitor the Doodle’s many seizures and try to get him the best sleep possible, I would sleep with him and cuddle beside him. Which, besides being a light sleeper, he now cannot sleep on his own. He’s now become so dependent on someone sleeping next to him—he can sense when he is left alone in the bed—even if it is just in the middle of the night for me to get up to go pee for 3 minutes.

We’ve done everything we can to accommodate his sleep issues. We even bought a King bed because he’s pretty big and likes to crowd me to the edge. Yes, he’s been known to push me out of bed a few times. Lately, he’s been having more and of the scream out, stiffen up seizures. It might look like a bad dream but his eyes roll back in his head and he usually stiffens his legs or arms. These last only 3-10 seconds but leave him a little disoriented (and me too) and then he usually goes right back to sleep.

Last night he had around 10 of these episodes. We really need to get him into Stanford to do another sleep study but that will be brutal on him. Immobile and stuck in a bed for 48-72 hours. The thought of it gives me a panic attack.

Laying there last night, listening to my hair grow because I could not get back to sleep, I couldn’t help but remember how sleep used to be one of my favorite things to do. I cherished my sleep and sleeping in. I could easily sleep until noon. The last time I had really good, uninterrupted R.E.M. sleep was in 2007 when I underwent hours of sedation dentistry.

I had just returned from a 3 night trip to San Diego in a plush 4 star hotel with a King bed all to myself…crisp white sheets, a down comforter and black out curtains and do you think I was able to get any sleep? Nope. Now, I cannot sleep without that little back-kicking-sweaty-head assaulting me all night long. I actually missed his Doritos breath blowing my hair back and his one leg draped over me. That’s my ironic sleep story and I’m sticking to it.

A Boy Without a Bus

2011-08-18T20:53:00.000-07:00

The Doodle started Kindergarten and it was a big day for him. We had received a confirmation letter from the (stupid) bus company that they would pick him up at 8:28am. A time which never made any sense to me since his school starts at 8:35 am. That gives them 7 minutes to get him on the bus, strap him into the special anti-escape jump seat, drive to the school, unstrap him and get him (and the other kids) off the bus and to his class in 7 minutes--hoping he's cooperating and there is no traffic and or red lights.

So we got ready for school and since he loves to ride the bus and it's been a while, I really talked up the bus and got him jacked up that "OH BOY! THE BUS WAS COMING!!! He got excited and so we went outside to wait for the bus. After all, the first day of Kindergarten is pretty exciting for any child--and parents, right? So we went outside and waited. And waited. And waited. Anyone who knows the Doodle, knows he doesn't like to wait; hates it in fact. He's got no patience, so we've all learned not to tell him something until it's going to happen or he screams and freaks out. After waiting 15 minutes with no bus in sight, I had my mom go inside and call the bus company. They couldn't find the bus driver and didn't know what happened to her--because she wasn't answering the radio, but, they assured us that she was coming any minute. So we waited. And waited some more. Now, 25 minutes late--I decide to go inside and call them again because the Doodle is getting a little tired of the waiting part and his uber-gelled up Twilight hair is beginning to wilt in the morning fog. When I call, I get the same lame response...they still don't know where she is but she might be in downtown Sebastopol. WTF? Hmmm. Well that makes no sense since we live in a completely different city and now she is beyond being a little "late", now she is MIA. As if I'm not having enough anxiety that the Doodle is going to a brand new school, with a brand new teacher and no one on one support aid this year to watch out for him....and I'm worried and wanting to take Jimmy to his first day of school too so that he doesn't feel slighted--and hoping I'm back in time to see the Doodle onto the new bus on this very special day-- needless to say, I could have really done without the extra stress of wondering where the hell the bus was and if it was ever coming. So I get irritated because they can't tell me anything and by now the Doodle's screaming has subsided, and I wanted an explanation. No one had any answers. I tell them to forget it, I will just drive him myself--which I could have done all along if some one at the damn bus company would have just let me know. So he was 45 minutes late for his first day of school.

And, although, I may have no cute pictures of the Doodle getting on the bus on his first day of Kindergarten, I do have these cute pictures of the Doodle waiting for the (stupid) bus with his new Thomas the Train backpack.

P.S. Oh, you know I called that bus company back...six times in fact--demanding to talk to a supervisor-trying to get a straight answer as to how they possibly forgot to pick up my son for school and that the alleged 8:28am pick up time was not at all acceptable since I didn't want him being late to school every single day.

Eye Contact Speaks Volumes

2011-08-10T23:40:00.000-07:00

For being autistic, this little Doodle has one of the most intense gazes I've ever seen. My friend was over the other day and said he communicates so intently with his eyes. And she's right. He may still be nonverbal, but that doesn't stop him from speaking to us with his eyes and gestures. He is masterful at letting us know exactly what he wants when he wants it. He'll take your hand and lead you or grab your face until you look at him and he knows that you get what it is he wants. If you happen to not understand him, he's tenacious and makes sure he can get you to figure it out whether it be with pictures, pointing or screaming if you're taking too long. No words necessary.

If he could talk he'd probably say: speech can be so overated.

A Doodle-Kind of Party

2011-08-02T18:28:00.000-07:00

We had a small birthday party for the Doodle on Saturday. I am always torn on whether or to have one or not. It's not so much that he won't miss it if we don't have it--it's more a guilt thing. I always had parties for Jimmy's birthday and still do. So why should it be any different for the Doodle? Right? I worry though. I worry about him getting over stimulated and it not being a good experience for him, or anyone involved...

But he was fine. Really good actually. Only a couple of melt downs and issues with Doritos. He had a lovely Thomas the Train Birthday Cake and loved-loved-loved blowing out the candles...a couple of times. He would clap and get so excited! It was hard not to do it again. And again. People were nice and obliged the singing of that song a couple of times.

My favorite part of the party was watching the Doodle finally drink out of a big boy cup. He loves drinking out of a cup now and for the first time ever he is drinking juice! Now when he drinks out of a cup he wants the whole family to clap. He takes a drink, puts the cup down and claps and he gets pretty cranky if people aren't showing their support and clapping along. So he was drinking out of his cup and clapping for himself and the whole party was clapping with him and cheering him on. He was so happy and I was so proud. Then it dawned on me...he's FIVE and finally drinking out of a cup. I looked at a few of his little cousins faces and they looked confused as to why this would be such a big deal since they've been drinking out of a cup for years and no one ever made a big thing about it. But that's OK. When the Doodle hits a milestone, no matter how far behind he might be--it makes it that much more special for Us. And we celebrate. And we clap.

So I had a small gathering. I decided not to invite a big crowd of my friends with kids who would come out of pure obligation or even worse, dream up the perfect excuse as to why they couldn't make it. I kept it to just a few of his cousins and his only two "friends". I figured that the family and cousins would have to come; after all, they are legally bound to come since they are family; and then also his only two little friends from school (which I am friends with their mom's) and guess what? Neither showed up. Thankfully, the Doodle didn't miss them. He didn't know I invited them and it's not like his feelings got hurt; for me, one of the only positive things I've found so far about autism.

I tried not to be irritated, offended or take it personally...after all, I have a child with autism and both of these people have a five year old child with autism so who would understand more than me about not wanting to take my autistic child to a party of all places??? I get it. I completely get it.

But as I thought about it more and more--it bothered me more and more. If ever you were going to take an autistic child to a party, wouldn't you want to be in like-minded and similar company? Wouldn't you feel more than comfortable taking your child with his/her unique behaviors and characteristics associated with autism and feel accepted and understood at another autistic child's party? Wouldn't you, for once, feel like it was OK and you weren't being judged? That's the part that bothers me. If I can't count on my friends without children with special needs to understand what This is like...and I can't count on my friends with children of special needs to get it, who can I count on?

I think it's time for some new friends.

Our Doodle Bug Turns 5!

2011-07-26T15:23:00.000-07:00

The Doodle turned five yesterday and I would have blogged about it yesterday but I was too busy giving him a Time Out. I'm not sure if he realized it was his Birthday and thought he could get away with more, but he was definitely on his worst behavior. He was put into a record number of Time Outs--9 to be exact....for various Doodle Bug infractions; the usual: throwing himself on the floor, screaming, throwing things, dumping dinner and so on. He was in a pretty crappy mood all the way until bedtime;then it got worse at bedtime trying to get him to go to sleep. It was one of those days where alcohol seemed like a pretty good idea (for me, not him). But I refrained from any libations since it was a Monday and the Real Housewives of New York Reunion was on. I needed to have all of my faculties about me to understand the craziness there.

We had enchiladas for dinner, which the Doodle spit out--so he ate his usual salsa and Doritos--I was a little bit offended, although he did love the guacamole and salad. We skipped the birthday cake since I knew blowing out the candles over and over and over was going to be a problem on this particular type of day. We will have the appropriate cake and ice cream at his little Birthday party this weekend. It will be a real blow out--he has invited both of his friends from school. Hopefully they like salsa and chips and don't mind singing that song over and over and over.

Reflecting back to five years ago--when I was expecting a standard and mundane experience with child number 2 since child number 1 was so easy....who would have thought we would have such a silly, cranky, cute, hard, challenging, rewarding, patience and character building little man to raise and worry about so much? I could have never guessed things would be this remarkable.

Our Little Graduate

2011-07-18T21:57:00.000-07:00

Friday the Doodle graduated his special ed day class preschool...it was bittersweet for me. There was a little cereomy and diploma. He threw an egg shaker at the head of the dad playing guitar and he danced a lot. Jim, Jimmy and I couldn't have been prouder.

I'm happy that he is moving on to bigger and better things but sad because his classroom and his teachers were like home. He was comfortable. He knew what to expect. He had a routine. He knew what was expected of him and finally got familiar with the program and it's rules and structure. We'll have a little break for summer and then he will start his special ed Kindergarten--where he will have to start all over again. Besides not being ready developmentally, emotionally and physically, transition for autistic children isn't always the easiest and while he's probably going to be anxious starting a new school with a new teacher--and a new bus route, so will I.

I will close my eyes and pray. Here's to hoping for a smooth transition into Kindergarten.

So True

2011-07-11T22:50:00.000-07:00

July 4th - Our Own Kind of Fireworks

2011-07-08T20:36:00.000-07:00

Every day is like the Fourth of July when you have a child with Autism.
Spectacular colorful explosions in the form of salsa flying and fantastic displays of emotion rather than blowing up fireworks in the sky.
Similar. But different.
It was hot here--so we hung out in the back yard and played in the water.
We skipped the fireworks for obvious reasons.
Crowds.
Fear.
Noise.
The over-stimulation factor.
The irony of the predictable amount of unpredictable; our life in a nut shell.
On the bright side, the Doodle is really getting good at throwing a ball.

Doodleville Updates

2011-06-11T10:38:00.000-07:00

Summer has officially started, and that includes some actual sunny weather around here. It was raining and cold most of May and even in June--I was calling it Junuary. So both kids are out of school. Jimmy is already bored stiff and annoying his brother and the Doodle starts one month of summer school on June 14. For now, we're just trying to keep the Doodle out of the refrigerator, off the counters, out of the pantry, from throwing things in the toilet and from scaling the cabinet to get to the DVDs and the DVD player. To say he is a little OCD about things is a complete understatement. He's gotten very ingenuitive, so he definitely gets an A for effort. He drags things from all over the house to stand on and stack to reach the things he has to get his hands on....things like my cell phone and chips. If we leave the gate to the bathroom open, you will find him in his clothes sitting in the tub with all his toys and the water running. Our house is an accident just waiting to happen. So far he's staying away from the sharp knives, poison and electrical outlets but then again, he's still just 4 years old.

On a more positive note, he's really into trains right now and pushing cars around. My mom bought him a Thomas the Train battery operated set but he wants nothing to do with playing with the train on the tracks. No, he would rather turn the train on and watch it fall of the counter.

We really thought we hit the jackpot when Jimmy brought him home a couple of balloons from the dentist. But all he wanted to do was release them and watch them get stuck to the ceiling and then freak out when we couldn't get them down. Never again can we bring a helium balloon home; it's just not worth it.

And the best news....no seizures to speak of, except those annoying things that wake him (and me) up all night.

Other fantastic news is that Jimmy got his braces off! And, he has zero cavities. That's amazing because he can really power-down the candy. I'm so proud of this little guy, not because of his candy eating ability but because of his great grades all year. He had all A's and one B, and he made the honor roll each semester. He's really growing up fast. He's actually almost taller than me. He's 5' 7" and growing. Yes, that is a slight hint of a mustache you see there in the picture....ahhhh the joys of puberty and back talking.

He's still trying to figure out which school he wants to go to next year. He can either stay at his current school and be a big 6th grader....or start Middle School and be a 6th grader in Junior High. I'm letting him make this important decision but I told him he can't keep changing his mind. He needs to decide and stick with it.

Moral

2011-06-08T11:09:00.000-07:00

An old man, a boy and a donkey were going to town.

The boy rode on the donkey and the old man walked.

As they went along they passed some people who remarked "What a shame the old man is walking and the boy is riding."

The man and boy thought maybe the critics were right, so they changed positions.

Later they passed some people who remarked "What a shame.... he makes that little boy walk."

So they then decided they'd both walk!

Soon they passed some more people who remarked "They're really stupid to walk when they have a decent donkey to ride."

So, they both rode the donkey. Now they passed some people who shamed them by saying "How awful to put such a load on a poor donkey."

The boy and man figured they were probably right, so they decide to carry the donkey.

As they crossed the bridge, they lost their grip on the animal and he fell into the river and drowned.

The moral of the story?

If you try to please everyone, you might as well 'Kiss your ass goodbye!'

Transition to Kindergarten IEP

2011-05-24T10:35:00.000-07:00

Dr. Seuss's IEP

Author Unknown

(To The Rhythm Of "Green Eggs & Ham")

Do you like these IEPs?

I do not like these IEPs
I do not like them, Geez Louise

We test, we check

We plan, we meet

But nothing ever seems complete

Would you, could you like the form?

I do not like the form I see

Not page 1, not 2, not 3

Another change

A brand new box

I think we all

Have lost our rocks

Could you all meet here or there?

We could not all meet here or there

We cannot all fit anywhere!

Not in a room

Not in the hall

There seems to be no space at all

Would you, could you meet again?

I cannot meet again next week

No lunch, no prep

Please hear me speak

No not at dusk. No not at dawn

At 4 p.m. I should be gone

Could you hear while all speak out?

Would you write the words they spout?

I could not hear, I would not write

This does not need to be a fight

Sign here, date there

Mark this, check that

Beware the student's ad-vo-cat(e)

You do not like them

So you say

Try again, try again!

And you may

If you will let me be

I will try again

You'll see

Say!

I almost like these IEPs!

I think I'll write six thousand three

And I will practice day and night

Until they say

"You've got it right!"

##############

And so it went....Jim and I went to the Doodle's IEP on Thursday afternoon, it was Jim's first time at an IEP. I warned him that they were intimidating, sad and not at all fun and that I usually cried at some point and would probably have to get bitchy and demanding. He went anyway. He was surprised at how many people were there all sitting around a board room table ready to talk about our son. So we sat for close to 2 1/2 hours talking about the Doodle and his progress and lack of progress in some cases--we were told how far behind he really is developmentally; which is no surprise but so much harder to hear when hearing it read monotone in a crowded room from other people. An IEP, as personal as it might be, feels very clinical when they talk about the "subject" (your child) in terms of where he might be on the vast autism spectrum, what age level he is functioning and how much support he needs.

For the most part, I held it together; maybe because Jim was there with me. Instead, Jim cried. All of the people involved in caring for the Doodle go around the table and give their reports and talk about if he hit his annual goals--the teacher, nurse, speech therapist, ocupational therapist, shape aid, etc. And when they were all finished, Jim thanked them for being so very kind and caring so much for our special little boy--that's when he got all choked up; which, in turn, made me cry.

It's hard to make a decision on where to send the Doodle to Kindergarten since nothing feels like a good fit right now and especially because they can't tell me the definitively who, what and where--they have given a few options and I went and looked at what I could--I can either put the Doodle into a mixed class of different types of special needs kids--or I can put him in a very structured class for just Autistic children. But, they cannot tell me yet where the class room is going to be for sure and who the teacher may be. Without that pertinent information, I cannot yet make the determination, therefore, I did not sign the IEP in full and won't make that decision until I can weigh all the facts involved. Sigh.

Happy Number 500 Post!

The Alternative

2011-05-23T18:26:00.000-07:00

Watching television lately has been more than depressing...probably something I ought to stay away from but it takes my mind off of my reality living with a little guy with Autism and Epilepsy. It’s nothing but bad news and Real Housewives. Devastation from the surge of Tornados in the Midwest and the South to the Giant’s fan, Brian Stowe, who is still fighting for his life after being brutally beaten at a season opener. There’s the constant threat of terrorism, the world coming to an end, tax increases, poor judgment from politicians (so what else is new?), the state of our school system, abducted babies taken from their cribs, senseless crime, unemployment, increase in Cancer and other diseases….need I go on?

Dora the Explorer and Blue’s Clues are beginning to make sense to me in a different way than before and I don’t mind having them on the T.V. instead of the alternative. Even watching the Celebrity Apprentice finale was depressing—yet enlightening. One of the finalists, country singer John Rich, was doing the show to raise money for St. Jude’s Hospital and seeing the many children and families who are fighting for their lives and trying to save their kids from devastating diseases like Cancer was a huge wake up call for me. Sadly but gratefully, it woke me up and reminded me to be thankful and blessed for everything I have and for my family. There could be much worse things than having a nonverbal special needs child with autism and a seizure disorder so I think I need to get over myself and remember to look at the bright side of things more often instead of dwelling on this unfair hand I feel I have been dealt.

Giving the Doodle a Hair Cut is more fun than....

2011-05-03T20:30:00.000-07:00

...A Clown On Fire.

Is it Really May?

2011-05-03T00:52:00.000-07:00

I can't believe we're already in month 5.....where did the time go?

Big news around here would be that the Doodle finally got his cast off.

I've been a bad blogger and haven't been blogging much lately. It's not like things aren't happening around here, just the opposite actually-things have been crazy busy and blogging is just one more thing on my to-do-list that doesn't seem to be getting done.

Here's a picture of the boys coloring Easter Eggs.

Better late than never, right?

And here is the Doodle on Easter morning playing with his new Thomas the Train from grammy. He's having the hardest time waiting for the train to come around the track, I thought it was teaching him patience.
Not so much.

Lastly, yesterday was a sad day around here because it was one year ago that my little

brother Tony passed away.

The only thing that brings me comfort is to hope he's in a better place.

It's what we like to tell ourselves anyway, to feel better.

Although it doesn't help the hurt go away.

Play

2011-04-19T23:44:00.000-07:00

Tonight was one of those nights I will remember and treasure. It's the kind of memory I will be able to conjure up the next time I'm feeling hopeless and alone. Nothing earth shattering happened, mountains didn't move but it is one of the few moments I've had where things have felt alright with the Doodle. I hate to use the word normal because I'm not convinced there is any such thing, but for a few moments it felt like what it must feel like to feel a sense of normality; to have two typical children, playing together; understanding each other and genuinely enjoying themselves without chaos and confusion. Jimmy sat down and did some serious floor time play with the Doodle with a toy and I could hear them having fun, laughing, giggling and being beautiful boys together. Jimmy kept his interest for over a half an hour which is a huge milestone,I didn't want this moment to end. The Doodle was very engaged and playful with Jimmy--he more than tolerated him.

I would look over at them and quietly observe their little happy faces because I felt if I made eye contact with the Doodle it might distract him. I kept waiting for him to be tired of playing or get annoyed with Jimmy and he didn't. He just kept on playing. He wanted more in fact. No big tantrums, no weird meltdowns or throwing of anything, nothing weird happened that punched me in the stomach of living with autism. It was a simple act of playing that I witnessed that gave me the nugget of hope I needed today.

Sigh-

Cheer Down

2011-04-12T23:09:00.000-07:00

In a good mood? Life great? Feeling too up? Things finally going well? Having fun? I can fix that. I can help you cheer down.

Come, spend a sunny morning touring special ed kindergartens with me and you too can come home so depressed you'd like to drink a fifth of Jack and curl up in the fetal position on the bathroom floor, close to the toilet in case you might throw up. Knowing that your special needs child is getting put into the system somewhere you know he is not going to fit in, even with other "special" children, is a pretty horrifying feeling. Can't wait for our Transition IEP--that is going to be a BLAST.

Orthapedic Deja Vu

2011-04-07T23:05:00.000-07:00

The Doodle is in a cast.........................again..............................a table top fell on the top of his foot. Not sure how long he has to wear the cast but it's definitely slowed him down a bit. We spent the better part of last Friday in doctors offices, radiology and then finished up with a 3 hour stint in the ER. Tomorrow we have our follow up with an Orthapedic specialist. A couple of years ago he fractured his shin bone and was in a cast for 3 weeks. You would need to see the Doodle in his true doodle-form to truly appreciate his activity level and to understand how this injury impacts this little guy with autism. He's taking it like a trooper but I wonder if he really understands what is happening or why he is in this cast.

Who Will Care For Dana | Parade.com

2011-04-04T12:41:00.000-07:00

Who Will Care For Dana Parade.com

Angels

2011-03-27T19:29:00.000-07:00

May the angels keep you til morning.

May they guide you through the night.

May they comfort all your sorrows.

May they help you win the fight.

May they keep watch on your soul.

May they show you better ways.

May they guard you while you're sleeping.

May they see you through your days.

May they show you new hopes.

May they still your every doubt.

May they calm your every fear.

May they hear you when you shout.

May the angels keep you til morning.

More than this I cannot pray.

And if the angels ever fail you.

Then may God be there that day.

~ Author Unknown

Because I Do

2011-03-15T23:44:00.000-07:00

My Little Compass

2011-03-08T21:24:00.000-08:00

The Doodle has a sixth sense (or is it a sick sense?) when it comes to direction either that or he's got a photographic memory. When we take him for a ride - doesn't matter which direction we are headed, we can be gone for ten minutes or ten hours and when we get to our Street he knows which way to turn to go home--no matter which direction we're coming from.

The other day we were driving by his school and before we got to the corner, he recognized where we were and started screeching and pointing from the back seat over at his school. We thought it might be a fluke--but then later on another day he did the same thing, coming from a different direction. Later that night, we drove by the school again and he again, recognized exactly where we were. It was dark and raining and we were approaching the school from an entirely different direction and street.

We can take him for a walk: stop. blind fold him. spin him around and then ask him which way toward home and he will point in the correct direction.

I look at the Doodle some days and I wonder what he will be like when he grows up, what special gifts has he been given? I can only hope that he will be the happiest little tour guide or rescue helper in Northern California.

What I Imagine Heaven Will Look Like

2011-03-03T23:28:00.000-08:00

From my window on the plane.
I took several pictures above the clouds and, again, perfect spheres of light were captured in my photos.

This was taken with my phone--and my flash was off because it was really bright outside
(even though it looks kind of grey and dark).

Strange, yet peaceful, isn't it?

What Matters

2011-02-26T22:30:00.000-08:00

"May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."
-author unknown

Someone sent this quote to me in an email today and when you miss your family - simple words can take on new meaning.

I'm out of town working in Chicago and THIS....

DOES NOT COMPARE TO

THIS...................................

AND THIS...........

I'm missing my boys.

All of them.

Snow in Them 'Dar Hills

2011-02-21T23:56:00.000-08:00

You don't see the vineyards dusted with snow very often around Sonoma County -

this can't be good for this year's grapes...

But, it was a great afternoon playing in the snow--just 25 minutes away from our house.

The Doodle has never been to the snow before.

He Loved It! And it gave him a real reason to wear gloves.

He played and ran and even threw snow balls at his dad and brother.

Jimmy and Jim went the day before and scouted out some cool places to go--

they went 4-wheeling whereas, I DID NOT.The Doodle and I opted out of any verticle adventures for obvious reasons but the main reason being I kept having visions of being featured in the Around the Empire and Obituary of the Press Democrat.

So we played it safe and had some snacks and got hailed on.

A nice holiday weekend and I'm sad that it's over and it's back to work.

Birthday Wishes

2011-02-11T00:10:00.000-08:00

Happy Birthday to Jim! I won't tell you how old he just turned.

But we had a nice, impromptu Birthday dinner party and all of his brothers came to visit.

Jim was beside himself and Jimmy had the best time hanging out with his uncles.

And the Doodle,well he loved the gravy and blowing out the Birthday Candles.

He thought everyone was singing that birthday song to him.

Hello

2011-02-02T00:17:00.000-08:00

Hello cute boy in a green and navy sweater, you're such a good eater.

Hello sunshine, nice to see you again.

Hello car, sorry I haven't washed you since last October.

Hello overnight field trip with Jimmy.

Hello Grammy and Papa, glad to have you home.

Hello work, it's nice to feel caught up (for the moment).

Hello February, can't believe you're here already.

Hello clean house, it was nice while it lasted.

Hello weight gain, time for you to go.

Hello new Artful Life magazine, I can't wait for a free moment to read you.

Hello Dr. Sullivan and UCSF - time again for the Doodle's check up.

Hello new IEP--we need to get you scheduled.

Bon Fires, Cuddly Pajamas and Angels

2011-01-25T23:43:00.000-08:00

It was a nice, cool night tonight and Jim was home so after some catch in the backyard, he and Jimmy built a big fire in the fire pit. Hopefully today was not a NO BURN day. We had our crispy Christmas tree and some scrap wood to get rid of, the only thing missing were S'mores. The Doodle loved being outside, watching the fire. (still can't figure out how to remove the damn date setting in the camera--because it is way off!)

Don't get freaked out when I mention this--and I know there are skeptics out there who will not even consider what I'm about to point out. But, every so often, there are unexplainable orbs in our photographs. You might say it's just a strange reflection caused by the flash, etc. And sure that is all possible...but what if there was no flash? In the 3rd picture above, toward the top right of the slider in the photo, can you see the perfect sphere of light? No it is not the moon.

Consider for a moment that the circles you see here in these pictures are perhaps a spirit or an angel. What if? Jim took about 10 pictures tonight from different angles and from different perspectives and from different sides of the house and in at least 8 of the pictures appear an orb (or two or three). The orbs are not in the same exact spot, they move around and their size varies as well. Can you see them?

Out of pure curiosity, I googled "sphere of light in photos". It's a HUUUUUUUUUUUUUGE phenomenon. There are thousands upon thousands of articles written from all kinds of different people about these strange balls of light that appear in photographs. They are called orbs, angels, ghosts and spirits. Wow. Go ahead if you don't believe me. Google it. I double dog dare you. You will get a little freaked out. I like to believe that they are spirits. I like to believe that they are people we lost and loved that are hanging around looking after us. Jim's parents maybe? Or my brother Tony? Or his sister Jeanne? Maybe my grandparents just popping in to say hi--the only way they can. In the form of a ball of light.

Whatever these spectacular balls of light are, they're really cool. And what's weird is that you can take pictures, one right after another without moving and they appear in only some. Go ahead, give me a perfectly logical mathematical or scientific explanation as to a what they are, but I will continue to believe that they are our relatives checking in for a little visit.

Do you believe?

On a lighter, less-freakish note, the Doodle was nice and cuddly in his new pajamas tonight. And I love it when he can tolerate his brother and cuddle while watching cartoons. Jimmy is the best big brother he could ask for.

43,There I Said It

2011-01-24T19:40:00.000-08:00

I turned 43 yesterday.

Posting it here seems to make it official. I'm 43 now. Although I don't feel 43. I feel more like 26 with lots of stress and responsibility. I remember when 43 seemed ancient, like really old.

So, I had a nice birthday. Nothing super remarkable during the day except my mom made me French Breakfast Puffs which are my favorite. I savored them with my freshly brewed coffee and the garage sale section of the local paper. Jim and Jimmy went riding and I had a caregiver for the Doodle so I headed out for some garage sales and antiquing at some of my favorite haunts.

Then I came home to a wonderful home-cooked Lasagna dinner which my mom lovingly made--for us and one of my dearest and oldest friends, Rosie and her family. I've known Rosie since Junior High and it's been great to reconnect with her. Dinner was relaxed and casual and fun to just hang out and visit. Every year my mom would make me and my brother Tony (who recently passed away) her famous lasagna. We watched some American Pickers and had some cheesecake for dessert. After they left I watched The Real Housewives of Atlanta and went to bed early.

I got some great gifts--even Jim, who is known to be the worst shopper in the history of male shoppers, came through in the clutch. He hit Safeway on his way home and came home with the movie about Facebook, The Social Network, Reese's Peanut Butter cups and $100 Macy's gift card! Whoot Whoot! God Bless Safeway and the pressure from a persistent 11 year old.

The day was easy with no drama or trips to the emergency room to speak of, the best kind of birthday to have.

Here's What You Can Do With Your Agreement

2011-01-22T23:48:00.000-08:00

At her request, I was considering signing a NonDisparagement Agreement with Dr. Griffith and stated that I would not initiate any disparaging remarks and that I would remove posts from my blog about her and try to have any other reports and complaints that I have filed and posted on various consumer websites and with government agencies removed, and although I was very, very clear with her what I was willing to sign--she continued to send me a Release of Liability/NonDisparagement/Confidentiality Agreement all rolled into one.

Here's what I understand based on my findings in a legal dictionary, in general conversation "disparage" means to speak poorly about someone, but in a legal context "disparagement" involves a false statement. My statements about Dr. Griffith have been anything but FALSE. I have recounted my recollection of what has transpired with our appointment, court dates, and subsequent dealings with Dr. Griffith and I have included my opinion of her based on first hand-knowledge from personal experience. My opinions, feelings and ideas about Dr. Griffith have been validated by several of her former patients and even well-respected doctors in her field.

For future reference Dr. Julie Griffith - so that you know the next time you try to get a former patient to sign a "Release" in exchange for money, here are the definitions so that you don't get them confused again:

Release of Liability: A release gives up a right, such as releasing one from his/her liability for harm or damage that may occur or have occurred from performing under a contract, or participating in an activity or service. The release acts as an assurance to the person requesting the release that they will not be subjected to litigation resulting from the signing party's informed and consensual acts.

Nondisparagement Agreement: A provision in a contract requiring one or more parties to the agreement not to make negative statements about the other(s).

Confidentiality Agreement: A confidentiality agreement is an agreement between at least two persons that outlines confidential material, knowledge, or information that the parties wish to share for certain purposes. However, when access to the information is to be restricted from a third party a confidentiality clause is added. It is a contract through which the parties agree not to disclose information covered by the agreement.

So I was going to agree to stop initiating any negative comments about Dr. Griffith and I was going to agree to even remove things I have said--not retract--merely remove. But that was not good enough. She wanted to silence me and she wanted me to lie (if someone asked me about her or this). So NO. Signing my rights away to her for a mere $1,000 balance is not worth it to me. I will continue paying her the balance of the judgment from the NO VALUE consultation, knowing that the medications she prescribed to my son without a comprehensive physical which I believe caused him harm and that her business and billing practices are disturbing and unethical.

I will chalk this up to a learning experience. I will be much more careful trusting people put into positions of power and influence out of pure desperation on my part.

My Little Einstein

2011-01-19T23:55:00.000-08:00

You can't see it very well in the picture but that is Einstein on Doodle's shirt. Did you know it is said that Einstein was autistic?

And, I've heard a little nutty.

I just bought a book called The Einstein Syndrome, Bright Children Who Talk Late - By Thomas Sowell. Can't wait to tear into that one. I'll let you know how it is and what the heck he's talking about.

Doodle might not be able to talk, but he sure understands a lot. I look at him sometimes and wonder what he's waiting for. Then again, I don't want his first word to be a swear word. But right now, I would gladly take one.

He'll be starting Kindergarten next August. Do I think he's ready? No.

Do I have hope? Yes. Mostly.

It's hard though when I think of how much catching up he has to do. Will he ever be "caught up"? The things kids learn in Kindergarten are so far beyond his capacity right now. I'm hoping for a miracle.

He's 4 1/2 years old. He can't write his name. He doesn't know his numbers or alphabet. He can't even sing the alphabet song. He's not ready to learn to read yet. He's still not potty trained. So it scares me.

To me, he's still like having a Toddler. He's stuck at about 2 years old right now, without any verbal skills at all. He still just has a few signs he knows. Caring for him is like caring for a 1 year old. You have to watch his every move. He can't be left alone much. He needs help with almost everything. When I've said as a mom, I wish I could freeze time and keep them little longer, this is not what I meant.

104.5

2011-01-19T00:36:00.000-08:00

Last night Doodle had a really high fever and kept pointing to his head that it hurt. You can't tell how miserable he was by this picture I took tonight, just 24 hours later. He is a completely new kid! (I know the picture is time stamped 12/18 because I can't figure out how to fix it...so I digress) He woke up yesterday morning at 5:00am burning up and he barely slept all night, he kept waking up and crying. What scares me the most about him pointing to his head is that he is having mini seizures or maybe had a big seizure while he was sleeping. How would I know?

What I do know is that this poor little guy has been sick 80% of his life. He is constantly fighting something and there is something seriously wrong with his immune system. But what? The last time he went to the doctor, we specifically asked his pediatrician Why and How he could be so sick for so long and this many times a year-- this can't be normal. She told us that it is normal for kids his age...What the? And that kids get 12 viruses on average a year. Hmmmmm. I don't remember Jimmy being sick like this, at least once a month. Are there just that many more strains of viruses going around? We had his tonsils and adenoids removed when he was two because of how often he was getting upper respiratory infections, colds and sore throats. The surgery hasn't seemed to decrease the amount or level of sickness in him. Whatever the reason, it has turned me into a real germaphobe. I find myself washing my hands several times a day and I carry hand sanitizer with me wherever I go because I am so afraid I am going to bring something else home to him from the grocery store or somewhere. I almost refuse to use a public restroom unless it is imperative or 100% necessary and completely unavoidable and when I do, I don't touch anything with my hands. I pull my sleeve over my hand and I flush with my foot.

I don't worry about things like his lungs and fevers that much on a daily basis because we have a nurse every day except Saturday that checks him and takes his vitals, so in a way I feel like he is getting good medical care at home. But, when I went to call the Doctor to see if I should be worried about him holding his head, I went to the Nursing Log and checked the last few days to see if he had been running a fever and maybe they forgot to tell me. Each day the nursing log said 97.5 degrees. Which struck me as a little weird that his temperature never fluctuated, even on days when I knew he was sick and felt warm to me. I went to find my ear thermometer (like the one the nurses use every day) and I noticed the battery light was on. I left Doodle with the nurse and went to the drugstore to get new batteries. When I came back the Doodle was sleeping. The nurse left and told me he was fine, sleeping it off and that his temperature was 97.5. A couple of minutes later, I went into the bedroom to check on him and saw that his breathing was really fast and I felt him and he was burning up. I put the new batteries in my thermometer and he had 103 fever. I checked it again about 10 minutes later and it went up to 104.5. I checked the thermometer that the nurses had been using and guess what? Yup. It told me he was 97.5.

Brain damage can begin at 105 degrees and with fevers come seizures, so at this point I am freaking out. I immediately called the doctor and he had me give him a full dose of children's Tylenol and children's Motrin at the same time. He said if his fever didn't come down to 101 or lower to bring him to the Emergency Room. Ugh. I was sick to my stomach. So I waited and waited and finally his temperature dropped to 99. Scary. Even scarier? A nurse that doesn't check the batteries in the thermometer and doesn't find it peculiar that a very sick and hot boy's temperature is 97.5 just because the thermometer says it is.

No Place Like Home

2011-01-14T00:51:00.000-08:00

Just took a trip to Dallas for work. 2 nights away from the kids. I thought it would be fun and exciting visiting a new city, staying in a nice hotel and getting some really good, solid sleep without a sweaty little four year old's head on my chest, waking up with his hair in my mouth.

Nope.

The hotel was really cool, the Magnolia Hotel in the old Historic Pegasus Gas Building in Downtown Dallas.

But, it was work, and I had to work long hours. And it was cold. And I got some bad news about a friend's parents dying in a plane crash on my way to the airport. And then I couldn't stop thinking our plane was going to crash. And then we got snow-delayed coming back. And I came home more exhausted then when I left, fighting a cold and sore throat. I tried to fight the negative thoughts, but they won. I know, I need to stop complaining. I'm lucky to have a job in this economy.

I guess I'm not cut out to be a world traveler.
I miss my boys too much.

Back to Reality

2011-01-07T00:19:00.000-08:00

We had a great time on our family vacation to Palm Springs. We stayed at Grammy and Papa's vacation home. 10 hours in the car with a Doodle Bug, he was ready for the jacuzzi.

He loved the warm water. Makes me think we need one here...but then I'd always worry that he would escape and find his way in there; like it might be a new OCD for him, so we'll settle for a warm bath for now.

The weather was nice, much warmer than it has been here. I forgot what short sleeves and sunshine felt like.

We hung out and relaxed and didn't have to be anywhere or do anything. We went to a movie and out to lunch. Grammy and Papa watched the Doodle overnight so that we could attempt two days in Disneyland.

Coffee and Go-Girl Energy Drinks. Even tremendous amounts of caffeine could not prepare us for the record Holiday Crowds at Disneyland...it was sold out! Two days in a row! We pulled up to the hotel and saw these big flashing traffic-type lights that actually said: 'DISNEYLAND SOLD OUT'. I wanted to cry--we had just left the Doodle back in Palm Springs and now we were in Anaheim, stuck paying for a hotel, with no place to go. Luckily, or rather, unluckily, the hotel had two day park hoppers--so we were thrilled! We checked in and took a shuttle over to the park...where it was so unbelievably over-crowded that it was even more heartbreaking. News reports estimate that there were 80,000 to 100,000 people there. The lines were wrapping around everywhere. You couldn't tell where one ride's line started and another one's ended. The pirates of the Caribbean ride was 2 1/2 hours long. So we left. It was miserable and it's not fun fighting crowds like that--Disneyland was a bust. Jimmy was really disappointed and I felt so bad for him. We had been looking forward to this trip! Obviously we knew it was going to be crowded...we expected holiday crowds. But this was not manageable. They way over-sold the park. They could have stopped selling tickets about 25,000 people earlier and been just fine financially.

It's really hard to be in a bad mood when you're in Disneyland. Something happens once you arrive. But, I've never seen so many pissed off people at the Happiest Place On Earth--you could see the frustration on the sea of people's faces; usually it's happy and magical; this time it was just stressful and ridiculous.

Jimmy put on a brave face--and took it like a man.

We considered attempting another nearby amusement park: Knott's Berry Farms or Universal Studios, but it was getting late and there was no guarantee the crowd situation wouldn't be the same everywhere, after all, it was during a holiday break. We went back to the room and Jimmy picked a movie to watch...then we went to a Van's Skate Park and an outdoor mall.

I bought him a couple of video games to make up for the let-down of Disneyland...

We had a nice dinner outside at the Fresh Market, Shirley Temples and Clam Chowder. So we did our best to make the most of our trip. The next day we met Grammy and Papa in Ontario, they brought us the Doodle and we made our way home (10 longgggggggggggg hours home).

It didn't help that the Doodle got really sick while we were there.

Jimmy and Doodle were really happy to be back. There really is No Place Like Home.

Christmas Day in Doodleville

2010-12-25T17:06:00.000-08:00

The Doodle had a great day.

We let him sleep in until 10:30 and then he got up and opened his presents.

He liked tearing the paper and he loved his DVD's.

Jimmy wrote us a touching fictional story and read it aloud and made us a cool Christmas Tree out of clay.

I love how creative he is.

Jimmy got a Play Station 3 from Santa so he was pretty happy.

They all played video games, including the Doodle.

Jim got a Snuggie.

And I got this necklace I have been wanting so badly from Jim and the kids,

it's made by one of my favorite jewelry designers and fellow-bloggers Lisa Leonard

It's hand stamped and says "Mama - Hand Holder, Dream Soother, Love Giver..."

It's my favorite thing ever.

It's cold and raining here so Coco opted to stay inside; she took a nap under the tree.

Our tree is getting dry and crispy and I can't wait to get it out of here.

I also can't wait for our family vacation to Disney Land and Palm Springs.

I hope the weather is nice.

Looking forward to 2011-

a fresh start, a new year,new dreams, new hope.

God Bless.

Happy Holidays from the Doodle Bug and his Family

2010-12-23T00:22:00.000-08:00

Been busy getting ready for the Holidays. It's usually my favorite time of year--but this year has been more busy than most. Work was crazy--my annual holiday sale seemed to go on and on and I still haven't had a chance to clean up after the sale...

We're taking a much needed family vacation soon and I'm trying my hardest not to get my expectations up too high. I'm just going to take it one day at a time and hope for the best.

Have a Merry Christmas!

INTEGRITY

2010-12-17T22:24:00.000-08:00

Sorry Dr. Griffith, you may have noticed,
but I'm not signing your Agreement.
I'd rather pay you for the bogus consult and keep my integrity.
I have a hard enough time sleeping well at night with an autistic child,
I don't need the weight of selling out on my shoulders.

Starting Early

2010-12-12T23:59:00.000-08:00

I'm starting my New Year's resolution early this year...seems silly to wait until January 1st to change my outlook. It's never too late to find Joy and give gratitude. Each day, I am going to make it a personal practice to stop, be still and be thankful for all that I have. I'm going to make 2011 more joyous for myself and my family by learning to accept things for what they are and not go so crazy trying to fix them.

It's Beginning to Look A Lot Like Christmas

2010-12-09T23:24:00.000-08:00

Finally picked up our Christmas Tree tonight. I just love the smell of a fresh tree. The Doodle loved picking out the tree and running around with the tree cart in the mud but he had no interest in decorating it. He'd rather take the ornaments off the tree then put them on it.

Jimmy can be such a good brother when he wants to be and it amazes me how fickle the Doodle is with him. Sometimes he loves him, sometimes he wants nothing to do with him. It's the moments when he accepts him that I love it when the camera is handy.

This will be an interesting holiday. I'm not sure what the Doodle Bug will think of presents and the holiday festivities this year or how many ornaments he will throw on the floor. But true to autism form, behavior will be unpredictable and trying; yet completely expected.

What I'm Reading

2010-12-08T23:37:00.000-08:00

There's a reason for everything, right? Yet, I struggle every day with wondering why. If I could just understand the reason, it would make this easier.

I'm still trying to find the hidden blessings in the autism--and come to terms with it. I'll be honest. I can't always see the positive aspects and "blessings" of this disorder. Maybe reading this will help me open my mind and understand why other people can see the Good in autism when I want to be rid of it.

We are still nonverbal - completely.

We still have behavior and OCD issues.

We still have seizure activity.

But, we still have hope.

The More Things Change

2010-11-20T16:12:00.000-08:00

The more they stay the same. The Doodle still loves his carts.

If He Could Talk...

2010-11-16T23:09:00.000-08:00

He might say:

Today was my perfect day.

Sunshine.

Sleeping in.

Getting my knee scratched.

Pushing my carts, wearing my gloves.

Being with my family.

Riding on the dirt bike.

My cough is finally gone.

Yay!

Daylight Savings means less time playing outside but more time cuddling inside.

Mowing the lawn with Daddy is fun.

Sitting on his lap, safe in his arms,

Wearing our hats.

Laughing and screaching.

Four wheeling in the Jeep.

And I got to go to the Dump today! Oh boy!

I couldn't think of anything that might make this day better...

Unless I was eating Doritos while driving the lawnmower.

Thank you for loving me so much with all of your heart.

It's That Special Time of Year Again

2010-11-10T22:23:00.001-08:00

Finding the Fun in the Dysfunction of Autism

2010-11-09T23:24:00.000-08:00

Who says the quirky world of autism can't be fun? Although, you must look very hard and it's not always pretty; it's there sometimes.

We found a few more things the Doodle Bug loves over the last couple of weeks besides carts, Doritos and running away from us. He loves forts, flashlights and gloves.

We (Jimmy and I) built him an old fashioned fort made out of blankets artfully tied to chairs and tucked under things. He loved it! He did his trade-mark high pitch screech which is his stamp of approval and patted the spot next to him, which means get in here next to me. Now.

We got pillows and laid down with him and then Jim brought him in a tiny little flashlight which completely made the experience off the charts fun for him. He was really happy, entertained and for the most part having a normal, 4 year old little boy moment of pure joy playing in a fort.

Not having much fort building experience, it wasn't long before the fort came crumbling down. Even though we had been playing in there for a couple of hours, we had an upset Doodle. But, a few years ago Papa Steve gave Jimmy a pup tent so Jim got it out and put it up. The Doodle loves it! You don't see many pup tents in Master Bedrooms but that's OK, it's us, putting the fun in dys-fun-ctional.

Halloween and Jimmy's Birthday Party

2010-11-02T00:37:00.000-07:00

Jimmy turned 11 this year and since his birthday is the day before Halloween and it was on a Saturday we decided to do a Haunted House Halloween costume party. Jimmy had a great time, a lot of kids from school came. We had a DJ and there was lots of dancing! We had games and a costume contest and some really creepy and creative food. I was a witch, Jimmy was part Jason from Friday the 13th minus any weapons and mask, the Doodle was a skeleton and my husband, Jim, well, since he left the party, he was the Invisible Man.

Now for the cliches...
We scared up a good time.
We got our ghoul on.
It was spooktacular.
The decorations were to die for.
There were lots of little Monsters running around.
It was a real scream.
I could go on and on, but I'll post a few pictures instead.

Trick. Or Treat?

2010-10-20T00:05:00.000-07:00

Every day is like Halloween when you have a child with Autism.

You wake up in the morning and the only thing certain is that you have no idea what your child may have in store for you. All you can do is hope, pray and use your imagination. It could be a trick or could be a treat. Although, my life these days, I feel mostly tricked.

It dawned on me that parenting a child with autism is similar to Halloween in many ways.

It could be cute. It could be funny. It could be disturbing. There's usually some dressing up involved. But most of all, it's scary.

You just never know.

My mom was telling me how much fun she thought the Doodle will have this year trick or treating.

My initial knee jerk reaction was that there is NO way I can take him trick or treating.

It would be pure chaos and madness and he wouldn't understand it anyway. If I didn't take him, would he miss it? Then the parenting guilt sets in about how unfair I'm being. He might like it for a bit. He'll like the car ride there. He might like dressing up as something. He might think it's kind of fun as long as it wasn't too crowded with too many people running around in costumes, screaming because that might be overwhelming for him and then he'd get all crazy and overstimulated and he'd turn his ability to listen completely off. I know one thing for sure, he'd love ringing the doorbells and getting things put in his pumpkin or treat bag. But I don't think he would really get it. Maybe I'm not giving him enough credit on this but I have a feeling he's going to want to go inside each house. He'll ring the door bell and if they don't come to the door fast enough, he'll get irritated and be trying the door and turning the knob and getting pretty worked up and upset that he doesn't get to go inside after all that.

And does he eat candy? No.

But I guess I will dress him in something cute for pictures and take him for the pure sport of it all and see how he does.

Having a nonverbal autistic child also lends itself to another awkward set of scenarios for when you ring the doorbell, the child typically says, "Trick or Treat"...and then "Thank You" or "Happy Halloween"...so does that mean I will have to explain at each and every house that my child is autistic and nonverbal and not really rude because he can't help it and oh how I wish he would talk someday and while I am awkwardly explaining my nightmare to a complete stranger, the Doodle will masterfully find a way to break through and run straight into their house. Then there will be chasing involved and either the person will call 911 or just smile and pity us and maybe pat me on the back as if to say it's going to be ok and slip me an extra Kit Kat.

Or I can just hand the person in charge of the candy one of these cards which explains it all.

And Jimmy will put on a brave and happy face and hopefully not be too terribly disappointed when we have to cut the trick or treating short because his little brother can't handle it and either can his basket case mother--and I'll try to explain to Jimmy how it's kind of a weird and hypocritical holiday anyway because I'm always telling him not to talk to strangers and to never take candy from a stranger. Hmph. Does no one else see the irony here?

Sure I'm guesstimating how this whole trick or treating fiasco will go down--and then at the end of the night as I'm buckling him into his car seat, fighting back tears because it didn't go so well, I will ask myself why I try to force something normal when I know better from experience? But at least I can say I gave it a shot right?

A Kiss to Build a Dream On

2010-10-15T22:20:00.000-07:00

I have so many dreams for my children.

And I'd be thankful if just two of them came true.

For them to be happy and to know that everything is going to be alright.

Pumpkin Patch with Grammy and Papa

2010-10-14T23:41:00.000-07:00

Grammy and Papa took the Doodle to the pumpkin patch on Wednesday with his class. I was bummed I missed it but I had to work. Grammy said he had a great time and really loved the corn maze. He was pretty excited about showing me his pumpkin when I got home and he's doing his happy shreik when I was downloading the pictures they took onto my computer earlier tonight. He kept doing the sign for MORE--

Truth

2010-10-09T23:20:00.001-07:00

Date Night

2010-10-09T22:56:00.000-07:00

...with Jimmy, not Jim--the other one, the little guy who I just measured and is now a 5' 4" 10 year old--soon to be turning 11 this month..

Tonight we went to a movie, Jimmy doesn't mind seeing "chick flicks" so it's almost like having a girlfriend to go to the movies with. We went and saw "Life as We Know It". We got popcorn and M&Ms and for two hours I sat in a crowded movie theater and escaped reality. No work, no phone, no deadlines, no stress, no interruptions, nothing to pick up or fix or make or clean or put away, it's what I love about going to the movies. It's dark, quiet, I don't have to talk or think or chase anyone or pull anything out of the toilet that shouldn't be in there. I get to sit, relax and just be entertained. And when it's just Jimmy and I, he is a delight; not talking back-trying to be cool or a smart mouth; just a nice boy who likes to go to the movies with mom and share popcorn on a Saturday night. The way I wish it could always be.

The Short Bus

2010-10-07T21:53:00.000-07:00

A self portrait of expression

by Doodlebug

Age 4

A Behavior? Really?

2010-10-06T23:42:00.000-07:00

Haven't had much to say lately so I figure why waste the words?

It's been nothing but rainbows and sunshine around here in the land of Autism.

I'm loving that the Doodle is back in school and he too is loving it. Sometimes I wish I had a little camera attached to him so that I could watch him in action and see how he's doing and how busy he's being and what kind of chaos he's creating there in the classroom.

The teacher is so sweet most days to write about his day at school. It's a nice way to stay connected. But...

Of course you had to know there was a BUT coming. It's been too quiet and a while since I've complained on here so here goes.

I'm thinking it must be me. I must be overly sensitive and hard to get along with because otherwise why would I keep seeing this pattern of conflict every where I turn? It's me I've decided. I'm on edge and feel like I'm to a point in my life where I'm not going to tread lightly and just smile and pretend and go about my business acting as if everything is dandy. I've got too much going on then to try to pull off sweet and go out of my way to not offend someone with a reaction or something I might say.

Is sensitive palate a Behavior? Is being a baby and now a toddler and not being able to put certain things in your mouth because when you do a natural physical reaction such as gagging and throwing up occurs considered a "behavior"? Or would you say it is a physical or psychological condition or uncontrollable reaction?

I'm having a battle of wits with the Doodle's new Preschool teacher.

She's sweet and kind and nice but then comes out of left field with some demanding "behaviors" of her own. Case in point: She wants the Doodle off the "bottle". Well, a few months back I was so happy that I had found the magic training cup for him...for the past 2 1/2 years I have tried every type of sippy cup there is with him and he refused because he would almost throw up. But he didn't refuse because he was being a brat or having a bad behavior, when I tried to put the hard plastic spout with the different shape to his mouth or even a cup he would gag and throw up. Hmmmm. How can a 2 year old manipulate the situation and make himself physically sick and throw up? He obviously couldn't help his reaction. The Doodle has always been the type of kid who doesn't put weird objects in his mouth, like rocks or marbles or buttons not because he doesn't have the impulse but because they make him almost throw up. Even some foods with certain textures do this. Same thing used to happen with Jimmy. Jimmy couldn't eat certain foods because of the texture: pudding, yogurt, scrambled eggs. He'd unintentionally barf.

The Doodle has been on the new training cup with the new spout now for a couple of months now (since August 22nd), which was a HUUUUUUUGGGGGGEEEEE mileston for him-- but the Teacher doesn't like it and doesn't believe it to really be a training cup at all. Yes, Miss Teacher, oh wise one and knower of all things bottle related, it's just a bottle pretending to be a training cup. It's all a big conspiracy to keep the Doodle on a bottle until he's 16 because that is my goal for him.

Puh-lease.

So, she thinks it looks like a bottle and doesn't believe it's a training cup so she wants to get us on a PLAN to get him off of the bottle at disguised as a training cup at our home. Completely. And just have him drink out of a regular cup.

Hmmm. In a perfect non-autistic-sensitive palate-Doodle world that sounds lovely. But reality is it's not going to happen right now, nor do I want it to happen right now. He's not ready for it to happen. He just made the transition to this pretend sippy cup and he's only 4. Let him have a few good months with the training cup. And the last time I checked she was his preschool teacher and I'm still his mom. Oh yeah and I have a few good reasons I want him to remain on the training cup right now.

I've got serious and strong opinions about this. It's not a matter of choice or preference--for me, it's a matter of health and safety. With epilepsy the Doodle needs to have a certain amount of liquid each day because of his seizures. He needs and must stay hydrated; it's not optional. I know now that he drinks at least four or five 8 to 12 oz bottles of liquid a day. He is and has been also drinking out of a regular cup, a few sips here and there. But he likes to dump it out and throw it. The other issue I have from experience with my child is that he is prone to throwing up--and the last thing I want is for him to throw up his seizure medication. It's really important that we avoid the gagging and throwing up if at all possible.

So I had to let the teacher know that while I am encouraging him to drink out of a real cup and he does drink out of a real cup at HOME--I have NO PLAN to do away with the training cup she thinks is a bottle for awhile. I let her know that I felt like the Doodle has bigger fish to fry...we have more important issues to contend with then a training cup. Things like: potty training, bad behavior, seizure control, sign language, learning to drink from a straw, ABC's, 123's, sleep, oh and TALKING. Sorry, but I think talking is a little more important than him NOT drinking from a training cup.

Besides being just 4 years old and Autistic with sensory issues and epilepsy, once I told her it was a matter of health and safety that he maintain his liquids and not barf--and that I was not going to get rid of the training cup that's when she decided this was a "behavior" for him and that it needs and should be changed. So I'll throw this question out to you in the blog world--is having a physical reaction like gagging a "behavior"? Please enlighten me before I explode.

King of the Castle

2010-09-29T22:26:00.000-07:00

Doodle is the ruler of all things.

Jimmy is the Jester.

Daddy is the Jack.

Although you may assume I am the all mighty Queen, I am actually the King's servant; a job I take very seriously.

Unanswered Prayers

2010-09-27T00:03:00.000-07:00

He can do it at the dinner table, put his hands together and pray. It's actually his idea. He pats the seats until we all get to the table--and then he'll put his hands together and look at us and smile. I'm not sure what he's praying for exactly, maybe more Doritos and a never ending fountain of salsa.

The bad news.

We've been having a lot more seizure activity lately. Not the big scary grand mal kind or even the throw him to the ground head drops--but more staring/absence seizures and definitely more jerk/scare him out of a dead-sleep seizures. Some are so powerful that he screams out and sits straight up, scared out of his mind. If he was anywhere near the edge of the bed, he'd fall off the bed; completely confused and scared. But, I'm next to him and these seizures wake me too. I pat him on the back and tell him it's ok and then he cuddles back into me and falls back to sleep.

Night terrors? Not likely.

I've been watching videos online of other kids and their types of seizures--and this is definitely one type of seizure. Picture if you were sound asleep and that feeling you get like you're falling and your arms and entire body react suddenly and you're startled awake. This happens with the Doodle at least 5 times a night, sometimes more.

I stop and think what kind of true sleep, in the form of actual restful sleep is he getting. He's always tired. And the dark circles under his eyes are getting worse and worse. I even bought a Dreamcatcher the other day and hung it on my bed. The Native Americans believe that the legend that good dreams will pass through the center of the Dreamcatcher and the bad dreams will get caught in the outer part/web. At this point, I'll try anything- superstitious or otherwise.

Food allergies? Metals? Toxins? Vitamin Deficiencies? Probably those too.
Along with the restless sleep, I've been jerked out of my denial that things aremight not be ok and that the medicine might not be working like it used to...and I think it's time to got back to UCSF for another sleep study if we have to. Oh, I am not looking forward to that one. And also to bite the bullet and find another DAN! Doctor to get the testing I wanted done last year when things went so very wrong with the last DAN! Doctor I chose.

Oye.

So tonight after his bath and just before bed we prayed.

We both got down on our knees and we prayed to God that the Doodle will be ok. I'm not asking and praying and begging for a cure, I just want him to be OK. As for the Doodle, he was just happy that I was next to him doing what he likes to do:putting my hands together and smiling and telling him it's going to be ok..

Because I'm feeling especially grateful today

2010-09-24T00:02:00.000-07:00

"You simply will not be the same person two months from now after consciously giving thanks each day for the abundance that exists in your life. And you will have set in motion an ancient spiritual law: the more you have and are grateful for, the more will be given you." ~ Sarah Ban Breathnach

Cuddles

2010-09-22T23:14:00.000-07:00

The Doodle is coming around.

He's much nicer to his big brother.

He actually loves to play with him now.

And cuddle with him.

And he gets excited to see him.

And he likes it when he sits down next to him as long as he gives him some space.

He even puts his hand in his shirt, a true sign of Doodle Love.

My hope is that they will always have a good relationship.

And get closer and closer as time goes on.

I know the Doodle will probably depend more on his big brother, for obvious reasons.

But I also know that Jimmy can stand to learn a great deal from his little brother.

The Doodle has taught us all a lot and will continue to teach us, if we open our hearts and mind and let him.

Selling Out

2010-09-21T23:53:00.000-07:00

There is a difference between removing something and retracting it...yet what I'm being asked to do just doesn't feel right. It feels out of integrity so I'm going to have to really think about this because it's not really about the money for me. It's about justice, responsibility, principle and ethical behavior. So although there is a distinct difference in word meanings, the outcome will be ultimately the same.

re·move (r-mv)

v. re·moved, re·mov·ing, re·moves

v.tr.

1. To move from a place or position occupied: removed the cups from the table.

2. To transfer or convey from one place to another: removed the family to Texas.

3. To take off: removed my boots.

4. To take away; withdraw: removed the candidate's name from consideration.

5. To do away with; eliminate: remove a stain.

6. To dismiss from an office or position.

re·tract (r-trkt)

v. re·tract·ed, re·tract·ing, re·tracts

v.tr.

1. To take back; disavow: refused to retract the statement.

2. To draw back or in: a plane retracting its landing gear. See Synonyms at recede1.

3. Linguistics

a. To utter (a sound) with the tongue drawn back.

b. To draw back (the tongue).

v.intr.

1. To take something back or disavow it.

2. To draw back.

Daddy Time

2010-09-20T13:57:00.000-07:00

Jim's been working out of town--too far away to commute and drive back each day so that means he's staying in a hotel. I can't be too jealous of his hotel/spa vacation this time because they have him working the night shift. Yuck.

So he comes home on the weekend, exhausted and trying to adjust to regular day time hours and get his sleep pattern back on track for a couple of days to then goes back and starts it all over again. He says the worst part is missing the kids. So this weekend he had all day Saturday with Jimmy, they took a day trip to Dixon and went riding at the track and he spent most of the day on Sunday with the Doodle. It was kind of a humid and rainy day so we watched movies and made soup and grilled cheese sandwiches.

We're not sure, but we don't think the Doodle actually knows how long his dad is actually gone for. We think he must just think he was at work for a very longggggggg work day when he's been gone all week. Sunday the boys rode motorcycles around the house - which is one of the Doodle's new favorite things to do. Jim says he seems so relaxed and "normal" when they're riding. He's not all crazy and freaking out. He said the motorcycle actually calms him. Maybe it's the vibration or the noise--or just being in his daddy's lap going fast that he likes. When they come back from riding around on the property, I know that the Doodle is pretty mad and cries and sits and does the sign for "MORE". One good thing is, he's so used to wearing his helmet that he doesn't mind at all putting on his motorcycle helmet.

Last Thursday night when he saw Jim at the door, he was pretty happy to see him. He gave him a huge hug and wouldn't let go. It made Jim's weekend. The one who misses Jim the most though (besides me of course) is Jimmy. He hates it when his dad is out of town. But they write letters to each other and text and call each other several times a day.

Doodle-proofing

2010-09-18T00:24:00.000-07:00

It's kind of like child proofing but different because we're dealing with a very ingenuitive 4 year old who has the attitude "where there's a will, there's a way". He's got a handful of things he obsesses about--so we have come up with creative ways to divert him. The problem is once you eliminate one thing from his determination, he is quickly onto the next thing. It's a rarity that he is just calm and sitting. He is constantly on the move and repeatedly into something he's not supposed to be. Toys? Nah. He'd rather pull the lid off something in the refrigerator or stick something in the microwave and turn it on. I just put a padlock on the tv cabinet with the dvd player because he could masterfully operate all of the electronic equipment. I had to move our tv/dvd in the bedroom way up high and get rid of our armoire that I loved because he could reach in there and destroy things.

Our remotes are all kept out of reach. The DVDs are hidden. The pantry now has a lock. Our sliders all have tension rods in them. We tie the refrigerator closed with a red ribbon which must be tied in a double knot or he can get it open. We block our front door with a couch. The stereo and cd player have been purposely unplugged and the pine cabinet it sits in has been nailed shut. Come to the front door and it might take a minute while I move the fancy furniture arrangement which acts as a barricade to keep him from escaping. I've asked Jim if it might be possible to bring home some cement K-Rail from one of his jobs because if the Doodle really puts his back into it, he can move the furniture--yes, he's strong.

Besides salsa and taking the lids off of drinks and dumping them out, his absolute favorite thing to do now is to run out the front door and try all the car doors to see if by chance any of them are unlocked. He loves to sit in the car and press all the buttons and flip the mirror down and check himself out and it's a big Christmas bonus if we've left the remote for the garage in there. He likes to get all the garage doors opening and closing at the same time; it must make him feel like he's in charge of something grand. He likes to play Chinese fire drill and get out and run around the car and get back in and climb over the seats and get out and get back in and so forth. It's not hurting much--but I fear he is going to slam his hand in the door because car doors are heavy for a four year old and I know it's a matter of time. What's that you say? Try locking the car doors. Uhm, yes. We do that. He now will go into the drawer where we keep our keys or even into my purse in order to find the keys and he runs outside with them--hitting the buttons on the key-faub-remote. Sometimes he gets lucky and hits the unlock button, other times he just sets off the alarm. Regardless of which thing he is ocd'ing about--I am constantly yelling "No, No, No, No, No". The word "NO" does not phase him. Neither does: Stop, Put it down and Get Back Here. What happened to the good old days when he would walk around pushing his little cart and obsess about that? At least that was just one thing to obsess about and it was managable and harmless.

I'm not sure what this all means. I keep waiting for him to grow out of "it". But I know he won't. The OCD is part of him just like his brown hair and green eyes.

I can't fathom the joy that these odd things bring to my son. He'd rather turn the lights and equipment in our house on and off than play with fabulous toys that he has which he has no interest in. Obsessive Compulsive Disorder--just one more special little gift from the family of autism we get to enjoy.

Hypocritical Parenting 101

2010-09-15T21:43:00.000-07:00

I must be the worst parent and worst example there is. Years from now, when Jimmy grows up, I'm sure he'll remember my famous last words: "do as I say, not as I do".

"Jimmy, stop yelling."

"But Mommy, you always yell. Every day."

Jimmy, I know it's hard but try to patient with your brother."

"But Mommy, you have no patience."

"Jimmy, you need to go to bed, you really need at least 8 hours of sleep."

"But Mommy, you stay up until 2:00 am all the time."

"Jimmy, it's not nice to swear it doesn't make you cool."

"Then why were you screaming those bad words at that lady in the other car?"

"Jimmy, you can't just eat junk. You need to eat your vegetables."

"But Mommy...why aren't you eating your vegetables?"

"Jimmy, you don't have to spend every single penny you have just to be spending it."

"But Mommy..(big sigh)...oh never mind."

Progress in Doodleville

2010-09-15T00:02:00.000-07:00

Since school has started just three weeks ago we have a different Doodle.

He's changing daily, he seems more alert and more interested in things in general. He LOVES to play with Jimmy now, before he wouldn't give him the time of day, although he needs to take him in small doses. He's able to wait a little longer for things without freaking out and melting down (insert big sigh here) and he's eating bananas and drinking out of a cup. He's gotten really good at feeding himself and he seems to be a little more independent at home.

The best and most encouraging change for me is that he is making different sounds and he's making these sounds on purpose...he's gone from vowel sounds only to now doing some dehdehdeh's and some fuh-fuh-fuh's.

I even put my big girl panties on and took the Doodle and Jimmy out to dinner tonight at Applebees--we went a little later in the evening so there would be NO WAIT--we went to a family restaurant with lots of noise (to drown out the Doodle), I brought snacks--and as soon as we sat down I explained our situation and told the waitress that he was Autistic and has NO sense of time or waiting and asked if she could bring us chips and salsa right away. It worked out great. Once the chips and salsa came he was completely entertained until his dinner came. We ate and when I could see things were getting a little sketchy, I asked for to go boxes and the check and we were there before any damage or screaming could be done. I had to explain to Jimmy that unfortunately he had to kind of pick up the pace and eat that we didn't have time for a lot of conversation. I think he understood but I felt bad for rushing him.

All in all I'm watching the progress and it makes me so happy. I'm doing my best to take things for what they are and not get my hopes up too high and understand that the Doodle's development is on a completely different schedule and wave-length than most. Que Serra Serra.

Where Did It Go?

2010-09-06T23:19:00.000-07:00

Without stating the obvious, it amazes me every year how much faster time flies the older you get. I remember as a kid, sitting and waiting for hours for things to happen--to grow up and have a new birthday come or a holiday like Christmas come. Everything took forever. Things could never happen fast enough. The school year drug on and on. Dishes on Christmas Eve took hours to get done before the presents could get opened. Driving somewhere seemed like it took an eternity in the boring car, work days drug on and (ok so some things haven't changed).

Now, time passes at lightening speed and some days it doesn't feel like there were really the right number of hours in the day that should have been there. And before you know it, it's the end of the week and the weekend is over in a blink and you start the whole process over again--and now your 42 years old with just 109 days until Christmas and you need to get to the grocery store and feel guilty if you want to take a nap.

We made it through this Labor Day, which to me, means summer is (basically) over. School has started, we're almost to Fall. Pretty soon Jimmy will be turning 11 and we're already talking about what to be for Halloween.

That means, Thanksgiving will be rolling around soon--and then the festivities of Winter will be upon us in full swing. 43 years old is just a blink away. I say that with Hope now because I know that life is a gift and a blessing and even though I get busy and overwhelmed and want to scream into a pillow, I can't forget that no matter where the time goes.

Each year, I never catch up and each year I seem to be less and less prepared (for things) even though I'm fully aware "they're" coming and, like some kind of out of control freight train, I can't stop it or even begin to slow it down.

Oh well. It's 11:03 pm right now and the day is damn near over. All the projects I wanted to get to this weekend seemed to get pushed off as if I will have more time this week to get them done, except that's just it, there's never MORE time.

The Witching Hour

2010-09-04T23:56:00.000-07:00

It's 11:30, do you know where your little witch is?

One of the little gifts of autism that keeps on giving for us is the insomnia and bad sleep patterns.

We've been through it all in the middle of the night: sleep apnea, night terrors, infantile spasms, teeth-grinding, bed wetting, seizures.

Sleep is no longer restful for me; not when you wrestle a 48 pound back-kicker all night to give you an inch of your pillow back.

It's hard to get this little guy in bed and asleep by 11:00pm.

The 7:30pm and 8:00pm catnaps don't help either.

If he goes to bed, say 9:00pm, he's up at 11:00pm and it's even worse than keeping him up late.

"He walked into the party, like he was walking on to a yacht.

His (witch) hat strategically dipped below one eye, his jammies were apricot.

He's so vain. He probably thinks this post is about him, he's so vain."

Autism is Lonely

2010-09-02T23:30:00.000-07:00

I can honestly say I've never felt more alone than I have in my cocoon of autism.

But, on the bright side, in the last week I have connected with two other moms with children on the Autism Spectrum. The autism spectrum is so very wide and vast and different--it's hard to find someone who may have a child that is the same age and with the same issues. But we're all connected and get it, you can see that by the identifying us with the same exact look of exhaustion and pain on our faces.

Today I met my new friend for coffee and she was so very kind. She shared so much with me, and that takes a lot. She opened her heart and her life to a complete stranger and I did the same.

It's completely different talking to someone and knowing that what you are saying is being heard loud and clear, and the best part is that there is a level of empathy there that others cannot comprehend unless you have been in our shoes and have to experience what we experience on a day to day basis. It felt like a huge weight was lifted just knowing she understood what I was saying and not judging me. I didn't have to choose my words carefully or not mention something. Today I could just be me, the Angela with the autistic son and the stressful life filled with worry and about a hundred other emotions.

Like it or not, Autism is my (new) world. And as much as I've tried to hope that one day the Doodle will magically get better, I need to be prepared for the fact that he may not. And that's ok to.

Is lonliess in God's plan?

I know that he has a plan for us. He has a plan for the Doodle and while I hate to accept it, at some point I must surrender and realize that I have no control over the Autism severity that the Doodle has. There's `lots I can do and try to do and hope that they might improve and help his "condition" but is there really a complete cure for autism. I wonder.

God Lives Under the Bed

2010-09-01T23:28:00.000-07:00

A beautiful story, sent to me from a good friend.

God Lives Under the Bed

Written by Kelly Adkins

I envy Kevin.

My brother, Kevin, thinks God lives under his bed. At least that's what I heard him say one night.

He was praying out loud in his dark bedroom, and I stopped to listen, 'Are you there, God?' he said. 'Where are you? Oh, I see. Under the bed...'

I giggled softly and tiptoed off to my own room. Kevin's unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.

He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an adult.

He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.

I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?

Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed. The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.

He does not seem dissatisfied.

He lopes out to the bus every morning at 7:05, eager for a day of simple work. He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day's laundry chores. And Saturdays - oh, the bliss of Saturdays! That's the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. 'That one's goin' to Chi-car-go! ' Kevin shouts as he claps his hands.
His anticipation is so great he can hardly sleep on Friday nights.

And so goes his world of daily rituals and weekend field trips. He doesn't know what it means to be discontent. His life is simple. He will never know the entanglements of wealth or power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.

His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it. He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax. He is not obsessed with his work or the work of others. His heart is pure.

He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue. Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.

Not confined by intellectual reasoning, when he comes to Christ, he comes as a child. Kevin seems to know God - to really be friends with Him in a way that is difficult for an 'educated' person to grasp. God seems like his closest companion. In my moments of doubt and frustrations with my Christianity, I envy the security Kevin has in his simple faith.

It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions. It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances - they all become disabilities when I do not trust them to God's care.

Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.

And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I'll realize that God heard the simple prayers of a boy who believed that God lived under his bed.

Kevin won't be surprised at all!

My Diet

2010-08-30T00:27:00.000-07:00

So I've hit a plateau.

I'm maintaining OK, despite my cravings for chocolate, but the weight stopped coming off. I'm stuck at 28 pounds lost or if I'm going to be politically correct I should say "released". I guess this means I'm going to have to get off my butt and exercise to see if that might help. My God do I hate to exercise. I would rather clean house or do laundry than exercise. I would rather peel potatoes, go to the gynecologist and do math. It probably isn't helping that it's midnight and I'm eating a brownie.

I need to stop thinking of food, it's hard to do that when I love to read foodie magazines and cookbooks, I know it's weird, but I get the best cookbooks at garage sales and I come home and read them. It's not like I'm trying out any new recipes, but there's something therapeutic about looking at interesting food that you didn't have to cook or shop for.

So here is a recipe I am going to actually try to make. I'm going to try to substitute the sugar with the Splenda baking sugar instead so the calorie content is a little lower--that way, I can eat MORE of them. I love the peanut butter kiss cookies, I make those every year at Christmas, but this is another spin on baking with chocolate kisses in a weird eggless dough.

Chocolate Kiss Cookies

2 cups flour
1 cup butter, softened
1/2 cup sugar
1 tbsp vanilla extract
1/4-1/2 cup finely chopped walnuts (optional)
Chocolate Kisses
powdered sugar

Preheat oven to 350F
Combine flour, butter, sugar, vanilla until well blended, add nuts, mix well.
Chill dough 1 hour.
Flatten about 1 tbsp of dough into a pancake, place one kiss in center, roll dough around kiss until completely covered.
Bake 10-12 minutes until bottoms are golden brown.
Let cool completely.
Roll in powdered sugar. (If you roll these when they are even slightly warm they will be a goopy mess.)

School = Sickness

2010-08-26T22:49:00.000-07:00

The Doodle is sick, after just two days back in school. He hasn't been sick in months. Now, he's sick again. He catches everything.

He's a mess.

Jim was home today and accidentally scratched him in the eye.

His nose and cheeks are all red from the snot coming out of it and the constant wiping. It's gross.

So, he's home. Fever, cough and runny nose. He's hard enough when he's healthy, throw some flu symptoms in there and you can count on needing a Calgon Bath and an Ambien to seriously take you away. It's not like being sick actually slows him down much, you don't exactly get a break--it just makes him a little more cranky and hard to handle.

Good times.

He Loves Riding the Bus

2010-08-25T22:50:00.000-07:00

And why wouldn't he? It's one of his favorite songs.

4 hours in the morning, completely Doodle Free.

Nothing to chase.

Nothing to clean up.

Nothing to lock up.

For four hours a day I can get something out of the refrigerator or the pantry and not worry about immediately locking it.

I can leave the front door and sliders open if I want to for fresh air.

I can relax a bit if it wasn't for work.

But then I get an uneasy feeling and I wonder what he's doing and how he is and if he's ok.

And I start to miss him and the difficult time he gives me,

And then he comes home and destroys something and I think, hmmm, how many hours before he goes back to school?

A Life Too Short

2010-08-24T13:35:00.000-07:00

Today would have been my little brother's 33rd birthday. You can click on the arrow to play a slideshow I made for him.

Not a day goes by when I don't think of you and wish you were still here with us. Last night I had to unhook our tv, dvd and satellite and move it and it took Jim and I 45 minutes to figure out how to hook it back up; and we still ended up hooking it back up wrong. That was always the kind of thing I could call you about. I miss those little things. I miss you.

Happy Birthday Tony.

xo, Your Sister

Big Day Today

2010-08-23T23:39:00.000-07:00

Someone started school today at a new school, new class and with a new Teacher!

That meant new routine, new bus driver, new bus route...new everything except for our old friend and Shape Aid, Betsy! Doodle is happy to have his Betsy back!

I'm so proud of him for riding the bus like a big boy today! He didn't have his nurse Leandra to help him and sit with him and hold his hand. I'm not a big fan of just the "seat belt". He used to get strapped into a more secure vest contraption...

He had a good day at his new school and made an excellent transition. When he came from school he was completely exhausted and took a nice hour and a half nap!

And we have a 5th Grader Now!

Jimmy also had a first day of school and had a great day!

He got the teacher he wanted and couldn't wait for school to start. I think he had kind of a boring summer.

And his first night of 5th grade he had HOMEWORK! Yay!

God Bless Mrs. Brown.

And the fun and excitement doesn't stop around here...not on a Monday! Besides it being the finale for Real Housewives of New Jersey, we had a little birthday dinner for Papa Jerry and the Doodle only escaped out the front door once during dinner to open the garages and break into a couple of cars. We bribed him into coming back inside for a cupcake. He helped Papa blow out the candles over and over and yes, we sang that song, over and over too.

If you're wondering why Papa is holding onto both of his hands it's because you cannot trust a Doodle Bug for one second, especially when there is FIRE involved.

Happy Birthday Jerry!

Progress

2010-08-22T23:13:00.000-07:00

Finally.

A little progress around here.

I thought the Doodle would be 16 years old, drinking out of a bottle and completely chewing off the nipple and choking on it...He is now drinking out of a "training" cup. Before, you could not even touch a sippy cup to his mouth without him screaming, kicking, crying and even gagging. It was strange, the second the new plastic nozzle-thingy would even touch his lips, he would almost throw up. When you have a kid on seizure medication you do not want them throwing up. So I bought every single kind of sippy/training cup there is, all different types and it was always the same thing. We'd try cups with straws built in, sports bottles, everything. A couple of more issues we have is that he refuses to drink any other liquid besides his Vanilla Soy Milk. No water. No juice. Nothing else and if you try, he gags and throws such a fit, he'll go on strike and then it would take him all day to accept his bottle again and I worry about dehydration. But finally, a training cup! It's pretty cool really because his BPA free bottles, which I love, have graduating spouts--which takes his bottle and turns it into a sippy cup. The plastic on the spout is perfect because it's not too hard of plastic, it's still fairly soft and squishy. I have to cut the opening a little bit so that the liquid comes out faster because I'm trying to get him off the sucking...and more on the drinking.

He also still can't suck out of a straw...I get the run around on this one on who is going to help him. The OT says it's his Speech Therapist and the Speech Therapist says it's the OT. Hmmmmm. How about we all work with him and try to help him with it instead of looking for a loop hole in a job description?

So we have made some progress, although I wouldn't exactly raise the flags and bake a cake because this was a 12 month milestone that we are hitting at age 4. But, that's ok, I'll take it. Better late than never as they say.

Discovery Kingdom 2010

2010-08-18T22:51:00.000-07:00

Today was our "annual" day trip to Six
Flags Discovery Theme Park (always known to me as "Marine World"). I took today off because I promised Jimmy that before school started (which is Monday) that he and I would go. It was perfect weather and perfect timing because so many kids are already back in school. There were no crowds to speak of and no lines for food, restrooms and even the rides--the BIG roller coaster rides included. We would pick a ride and literally just walk right on, or in Jimmy's case, Run.

We went to the Dolphin show, saw the Penguins and took lots of pictures to scrap book.

I did my best to stay away from the junk food--although I snuck a few french fries and had a few sips of a cherry Icee. But I brought my pedometer which tells you how many steps you take. I took 13, 877 steps today. 2000 steps is approximately equal to 1 mile. So I had fun while exercising. Jimmy met a friend there from school so I hung out with his friend's dad most of the day while Jimmy went on rides with his buddy.

All in all, it was a great day, but in my old age, Theme Parks now wear me out. And I'm exhausted. Maybe it was all the excitement...

THE LUCKY ONE

2010-08-16T22:53:00.000-07:00

Anyone who knows me, knows what a HUGE movie fan I am.

I've always liked movies, all kinds of movies. And, for a spell, I was even writing screenplays in my spare time. I've written 4 full length motion picture screenplays: a romantic comedy, a dark comedy, a psychological thriller and a drama. Nothing has ever happened with them, they are all in first rough draft form and need a lot of work, but that's another blog post.

Today Jimmy got a call from his Agent, that he was picked to be one of 9 kids chosen to try out and audition for the new Nicolas Sparks adaptation of The Lucky One, starring former Disney heart-throb Zac Efron. I don't know who was more excited about this, me or Jimmy...

So tomorrow he'll go for his first acting audition with lines he has had to memorize. I'm nervous and so very excited for him. You never know, right?

Wish him luck.

Happiness

2010-08-14T22:40:00.000-07:00

Happiness is a new cart.

10 Clowns Don't Make a Circus

2010-08-13T23:33:00.000-07:00

Went to the grocery store with the Doodle tonight.

Thought ah, what the heck, my Friday night is shot--I have no life, why should I keep all the excitement of picking out ripe avocados and peanut butter to myself.

It's not an easy decision you know. Creamy or chunky. It could go either way.

So I threw a hat and a sweatshirt on the Doodle since it's been freakishly cold around here in the middle of, ahem, summer. And I told him to get his shoes. Of course he ran in into the bedroom and picked out the rain boots and who am I to judge? Maybe he has the sixth sense of a meteorologist and a built in Doppler radar and can detect when a storm is coming. Besides, the blue and yellow boots complimented his multi-colored striped pajama pants well.

So off to the store we went. What other kid starts clapping his hands and shrieking when you pull into a Safeway parking lot? I looked in the rear view mirror and saw that giant smile on his face and knew I had made his night.

It was only going to get better for him, I could see the look of excitement and anticipation on his face.

He must have a photographic memory along with his keen sense of direction because he definitely knows his way around the super market. He knows exactly where the chips isle is. Maybe he can smell them. It doesn't help that they put bags of chips, namely Doritos, at every checkout stand, end cap, sale station and deli section of the store. Now that I told you about this weird Doritos phenomena, watch...the next time you go shopping you will see Doritos are everywhere.

So, first off, we head to the chip isle as he so eloquently points and grunts toward to get his Blue Cool Ranch Family Size bag of Doritos fix. It's like Christmas in August for him.

While shopping, I can't help notice all of the people staring at us. I'm generally used to it, but tonight it hit me, maybe I shouldn't dress the autistic kid in weird clothing combinations. Maybe it was the Jester Fleece Hat with the Bells that made a statement without saying a word as we jingled our way through the store. Or maybe it was the striped pants and the rain boots. I'm sure it wasn't the flapping of the arms or the yelling when he didn't get his way, or the way he tried to grab onto other people's carts as we passed by them in the isles and stared at them with that intense look of a midget Jester. Or maybe it was how he dove his hand into my shirt when we were waiting for our turn in the check out line. All I could think was what a great show the security bubbles in the ceiling were getting of my bra.

So the question here is am I making it worse for the Doodle (and me too) by dressing him in silly, funky outfits? Maybe Safeway shoppers just weren't ready for the Jester hat. It's not like when I dress him in cute normal clothes, people think he's not autistic.

Patience is a Virtue

2010-08-12T00:03:00.000-07:00

During a random breakdown the other day, I was talking with someone about the Doodle, his autism, his seizures and what my life has become--in a nutshell.

Yes, a nutshell I said....no punn intended.

Anyway, we were talking about deep things like Karma. And I mentioned that maybe these things that were happening (to us) were happening for a reason, maybe it was a form of Karma and I am being paid back for something I have done. My friend disagreed, although it should be mentioned that she does believe in Karma, she said that God does not punish.

Then why does this feel like a punishment?

She went on to say things she thought I wanted to hear...things like God gave me a special needs child with challenges because he knew I could handle them.

Ok. I guess.

Although, I don't handle them very well.

She said that God gives special people, special circumstances and sometimes they come in the form of a special child.

She couldn't have put it any nicer and I know she was trying to make me feel better.

She said that God has a plan and that there is valuable learning and teaching going on here (in my life).

I thought about that for a minute and agreed.

Kind of.

Yes, I am being taught something from all of this.

What exactly that is I am not too sure of.

At first I thought maybe I was supposed to learn about tolerance and patience and maybe I am.

But it's not working very well.

I was flipping through a local Junior College schedule of classes, thinking maybe I'd like to learn an art or a foreign language--maybe take a photography class.

Then it hit me. I had an epiphany.

The class I need to take the most, they do not offer--at any school.

They do not offer classes on learning how to be patient.

Maybe it's a genetic thing.

Maybe it's a learned behavior.

Whatever it is, it is a gift; oh yes, and a virtue.

All I know, is that somehow I did not get that personality trait.

I think I must be one of the most impatient people I have ever known.

And I think it's getting worse, not better as I get older and worry more.

You would think having a special needs child would help me learn patience.

Nope.

The worst and most ironic part is that I fear I am too impatient to ever learn patience.

Obsessions

2010-08-10T23:34:00.000-07:00

Ever since the Doodle got this blue muscle push car for his birthday, he's been a little obsessed with wanting to get pushed around in it...inside. Don't forget, it's got the quiet ride wheels and a seat belt, so Jimmy straps him in and pushes him around. Everything is fine until Jimmy gets tired and wants to stop.

Stopping for the Doodle is problem and not an easy option.

He has no emotional skills to know how to handle that and he cries and freaks out until we have to physically remove him from the little blue car and stick him in his time out chair with the seat belt; which then gives us time to hide the car from him and to put it back outside.

At first, when we find something that he loves and that makes him happy, I am so excited. Finally, I think to myself, and then the obsessions set in and then the meltdowns and then I wish we would have never let him like it.

Today I gave Jimmy a couple of bucks to push him around in the little blue car. He was doing hot laps around the island with him when all of a sudden his head hit the dash. The first thing I thought was, OH NO, a head-drop seizure, but then I realized he had just fallen asleep. Jimmy wore him out.

Distractions and Celebrations

2010-08-10T00:13:00.000-07:00

Been really distracted lately; and busy to say the least..can you tell?

Work has been crazy--3 back to back live events in 3 weeks. Trying to squeeze in my responsibilities as a mom and a wife is starting to take it's toll. Every time I sit down to write a new post, I get writer's block and I can't think of anything worthy to write about.

For the last few weeks we've been planning a surprise party for my uncle Jimmy. He has a Martial Arts studio and was just promoted to a 7th Degree Black Belt. In the Martial Arts world, that's a big deal because there is only four 7th Degree Black Belts in the World Tang Soo Do Association...and one of them is my uncle! There is only one 8th degree black belt and only one 9th degree Black Belt, the Grand Master. In Tang Soo Do, there are only 9 degrees since they believe 10 represents perfection and nobody is perfect.

So my uncle Jim DeBaca was just promoted and since none of us could make it back to North Carolina to witness it, we decided to celebrate here and throw him a big party. It's hard keeping a secret from him when there are so many people and dynamics involved so I thought for sure he would find out. We invited all of his friends, family, and martial arts students. We had a band, actually his band Amnesia played with a substitute drummer. There was a lot of scheming involved and the timing was really tight but it all worked out and we ended up with about 85 people here for dinner and live music. People danced, drank and his daughter put on a beautiful and touching slide show with some songs from Rocky. Yes, I cried.

He pulled up and everyone was noisily waiting inside. There was a lot of shussshhhhing going on but it's hard to shush a room full of adults. No one was listening.

We had the curtains drawn, even though there were a ton of cars parked all around, he thought they were here for my Jim's decoy birthday (which is actually in February). So he came to the door and we all yelled surprise, and he just kind of looked at us--smiling, not really sure what just happened. Then he started recognizing people from the gym and his friends and then he saw the big portrait of him and the Grand Master from his promotion and he finally got it.

S U R P R I S E !!!

The party was a lot of fun. I love my uncle and I was so happy to do something for him since he's done so much for us. And it feels good to have a party for someone, celebrating them NOW instead of at a funeral. That way you know that the person knows how much you honor them NOW, in life, not just after they have gone and they can enjoy their own party and not have to wait until they die to get one.

My uncle Jim saved my life when I was four. I was running around the swimming pool with a towl over my head and fell in the deep end and sunk to the bottom like a rock with a towl over it's head. He dove in and saved me. Maybe I wouldn't be here today if it wasn't for him. He was in the right place at the right time.

Uncle Jimmy and Mom

But, I always stress out before a party, which tells me maybe I shouldn't be having parties, but I like it once it all comes together. It's just the day of where I get a little anxious because there is never enough time in the day, no matter how prepared I am, I am always scrambling around at the last minute with a bunch of things that never got done. But does anyone else know they didn't get done. No. But I know.

I popped a Valium around 4:00pm and chased it with a glass of Merlot. I was so keyed up from the stress it didn't effect me AT ALL. Neither did the Margaritas and shots of tequila. I was invincible, even large amounts of alcohol could not penetrate my level of stress.

I also stress about the Doodle. What to do with him before and during the party. This time, Jim was going to keep an eye on him, but that's a pretty big job--and it's hard and exhausting to watch him when he's in full blown overstimulated autism mode. He doesn't listen and does a lot of taking off. You cannot, I repeat cannot, stop for five seconds and talk to anyone. It's not possible. He takes off and you have to chase him. He kept taking off out the front door--his new obsession is opening car doors, going into the driver's seat and turning everything on. He likes to flip down the mirror and check himself out and his favorite thing is the garage door opener. We just had to start locking our cars and we just had to completely unhook the wires that open the garage door because he goes a little crazy with the opening and shutting. When he saw all the many cars here for the party it was like Christmas to him. He couldn't help himself. He went from car to car to car trying every door--setting off car alarms in the process.

Who knows, maybe he'll be a Valet one day.
Would you let this kid park your car?

He loved the band. The music was loud and he loves loud music. There was a stage that he was drawn too--all he wanted to do was charge the band.

Amnesia

The first couple of times he ran up to the singer was kind of cute, then it got annoying. And tiring. You'd think oh, well, just let him go up there, what's he going to hurt? Uhm. The little destroyer of all things was on a mission to start knocking crap over and unhooking amps and microphones. I could see it by the look in his eye.

Jim watched him for a while and then I got a turn.

Don't I look calm cool and collected? Maybe the narcotics and alcohol helped take the edge off a little bit after all.

One thing I learned after having this party is that if I ever, ever, ever have another party again I will most definitely be getting a baby sitter to watch the Doodle off site so that I can relax and enjoy myself. The party hater Jim would be happy if I never had another party again as long as I lived. He thinks parties -- for any reason are stupid. But that's another post.

Jet Lag

2010-08-03T21:57:00.000-07:00

So glad to be home. I've got jet lag, but not the kind of jet lag from traveling you might think...the kind you get from no sleep because you're sleeping at the airport. Well, not in the airport, but at a hotel right next to the airport. By 2:30 am, I laid there counting airplanes taking off and landing--I was up to 24. I had to work at a live event for my boss this weekend and was actually looking forward to spending the night in a nice hotel room with pay preview, room service and a big, giant king size bed all to myself with no sweaty little head laying on my neck all night, waking up with a mouth full of the Doodle's hair in my mouth and a wet bed at 4:00 am. I thought about how fun it would be to go out and enjoy a nice dinner by myself, find the closest Ross or Marshalls and maybe have a glass of wine and chase it with a couple of Tylenol PMs, come back to the hotel room have a nice hot bath, watch a movie and pull the black out curtains for one heck of a night's sleep.

No such luck.

The event set up on Saturday night was a nightmare and was completely wrong at the hotel.

I spent the night doing manual labor moving tables and chairs around a meeting room for 3 hours.

I then had to find the nearest Target to get my boss a new Stop Watch.

I completely missed dinner other than some cashews I found in my purse and a Pop Tart from the vending machine.

No fine wine.

No room service.

No Tylenol pm because I had to wake up at 6:00am and I was afraid if I took it, I wouldn't wake up on time.

And then there were the airplanes.

Oh so many airplanes.

Instead of counting sheep, I counted airplanes.

I laid there as the planes wizzed by wondering where could all these people be going? It was a bit of a reminder to me of how little I travel. I can't remember the last time I was on a plane bound for somewhere.

Then the glass-half-empty in me kept thinking that one of these planes was going down and hard by way of the 5th floor at the Clarion Hotel at the San Francisco airport. I had pangs of jealousy that Jim was snuggled up in our bed with both of our son's getting kicked in the back all night long and that he got to leisurely wake up with them and watch cartoons and drink his coffee.

My alarm went off at 5:58 am. I didn't even bother hitting the snooze button. I was already wide awake. Maybe I've jumped to conclusions with Jim assuming how fabulous it was to stay out of town and away from the kids for a few nights...now I know what he means when he says how hard it is and how much he misses the kids.

I really missed my family.

There really is no place like home.

My One Cute Blog

2010-07-30T00:24:00.000-07:00

Have you noticed, the background on my blog keeps changing? Long-story-short, one day my background just disappeared. Poof! Gone. Completely unintentional. I had downloaded it free from one of these cute blog layout sites. I'm not a high-techy person so I went searching for another layout. There are so many out there, it's hard to choose. I like this one with the little birds; birds now remind me of my little brother Tony and how much I miss him. I have a little bird on my fireplace in his memory; it looks like the little bird that appeared around here right after he died. I still think about him every day.

The blog is a little pink but oh well, it's cute and it's free. I got this one from myonecuteblog.com.

They've got all kinds of cute stuff over there...soap, jewelry, fun links.

Thanks http://www.myonecuteblog.com/

Where's Doodle?

2010-07-29T00:08:00.000-07:00

A little game the Doodle Bug likes to play...

Where's Doodle?

He loves more than anything, even Doritos, to be chased!

He cracks up and runs but then slows down so that you'll catch him.

You have to say, "I'm going to get you" and that triggers it.

His new favorite thing to do is hide.

If you can't find him, there's a pretty good chance he's

in the shower,

in the pantry,

in the curtains

or he just went out the front door.

July in Doodleville

2010-07-27T23:42:00.000-07:00

Watching a movie in 3D with Dad.

Playing in the Danger Zone.

Doing a little stretching to get warmed up for running my parents ragged.

Jimmy

2010-07-26T23:24:00.000-07:00

A friend of ours is a great local photographer and since it was time to update Jimmy's portfolio we went to his studio and did a photo shoot. He's at an awkward age right now where he does not look 10 years old. He goes to auditions and "go see's" and he's a foot taller than most of the kids his age. Of course I'm bias but I think he's one handsome boy. I love how Italian he looks in some of these pictures, he definitely get's his olive skin from his dad.

Happy Birthday Doodle Bug!

2010-07-25T21:36:00.000-07:00

I can't believe your four.
I hope today was a happy day for you.
Short of taking you to the Dorito's factory and cutting you loose, we tried to do things that would make YOU happy.
You smiled a lot, clapped your hands and didn't bite anyone so I'm taking it that it was a good day.
Thank you for all of the hugs; it makes it worth it.
We love you.

Diversions and the Garden Hose

2010-07-24T00:02:00.000-07:00

Jim describes living with autism like trying to plug up a leak in a garden hose. You plug up one hole and the water will shoot out somewhere else.

How do you get a melting down autistic boy with OCD to stop obsessing about something? Easy. You divert his attention away and give him something else to OCD about.

When the Doodle is going nuts and is on his 9th bag of Doritos and 2nd jar of salsa, we tell him he gets to pick out a DVD and then after he has picked out nineteen DVD's and each time you put one in the machine and start it and he screams his version of NO at you, and you just can't take anymore then you take him outside to play with one of his carts. When he throws a giant fit outside and runs away and doesn't want to come in, we tell him he's going to take a bath. How then do we get him out of the tub since he doesn't want to get out of the tub? Hmmm. I guess I should have thought through a little better because he's still in there. I know, I'll entice him into getting out of the tub with a bag of...Doritos.

The Trade In

2010-07-22T23:23:00.000-07:00

Goodbye Pinky, Hello Mr. Blue

Nurse LuLu

Somebody's going to be four years old this weekend! Grammy and Papa gave the Doodle a shiney new blue car with about 5 inches more leg room than the pink car he's been driving around town. That pink car has hundreds of miles on it and it was, well, time to retire it and trade it in. Now, we won't get so many stares (oh who am I kidding?) as when I'm pushing the Doodle around in the pink one. Half the problem was the color and the other half was how very loud it was. No, it didn't have an engine, but the wheels were so loud you could barely walk and carry on a casual conversation while pushing it, especially on pavement. The new blue car has a fancy horn and quiet ride wheels. So it was a definite upgrade and the Doodle couldn't be happier.

Dr. Julie Griffith Update - More Fraud

2010-07-22T00:41:00.000-07:00

Just when you think "Doctor" Julie Griffith might have actually learned something from this whole fiasco with me stopping payment and going to court and my complaining to anyone who will listen about her, she continues to amaze me with her lack of integrity and level of corruption. Either she is more conniving then I have given her credit for or she has poor judgement and no business sense.

I've had 14 people contact me in various ways, all with similar complaints and issues with Dr. Julie Griffith. Most issues with her have been regarding her hijacking and extorting money from unsuspecting patients during a serious health crisis. There is definitely a theme to all of the comments, stories and emails I've received and that is that they think there is some serious crazy and unethical medical/business practices going on at that office. Her billing practices are beyond reasonable and now I have just one more personal experience with her to prove what a fraud she is.

I've been making Dr. Griffith monthly payments for the one and only consultation we had with her that I had stopped payment on. I'm paying her $100 a month on the 20th of each month. My original bill was about $1600 for the one consult with her. I stopped payment and with good reason. We went to small claims court and the judge knocked $500 off the total due to her. So that's what I'm making payments on, the JUDGEMENT + she is tacking on 10% interest.

One of her patients emailed me and told me according to Marin County tax records, Dr. Griffith was in default on her HOME/office (since she lives in the same place she sees her patients) property taxes and that it was being sold in foreclosure. Surprise! I could never figure out why this brilliant Neurologist would even bother with collecting a measly $1600 after what she had done to my son. At $500 per hour, this doctor must be doing pretty well right??? And what doctor who makes $500 per hour would want to waste their valuable time sitting in Small Claims court? You have to figure their time is worth something. But when your patients are dropping you like flies and you have nothing better to do, I guess you fight for what little business revenue you can get; even from someone you knowingly wronged and has opening and legitimately disputed it. How many exceptional and reputable neurologists do you know who are broke and chasing $1600? Sorry. I digress.

So I get this "statement" from her office the other day in the mail, letting me know she has "moved her practice". But what was even more curious about the statement was how inaccurate it was. With Dr. Griffith's track record, I highly doubt this was by any kind of innocent mistake or clerical error.

First of all she is charging me interest for the last year + that we have been in dispute over this payment; when she can only be billing me for the small claims judgement-yet she's going all the way back to April 2009 and trying to tack on interest from there.

I also love how she has me classified as being in "collection". Hmmm. I did exactly what the court judgement told me to do. I had so many days to contact her and 1.) either pay her in full or 2.) make a payment agreement with her--which I did within the time frame given. I contacted her to make payment arrangements, she did not contact me as if to collect. So as long as I keep my agreement and make my $100 payments per month to her, how am I past due or in collection? It's what SHE AGREED TO.

My favorite discrepancy within the statement is how she has my original balance at $2300+ showing a $975 credit memo. NONE of her numbers even add up. What the hell is that all about? Never, ever was that my amount due to her from our one and only consultation. She's concocted an arbitrary amount that was never charged or billed or authorized or documented to me and now is acting as if she is giving it back to me in the form of a credit memo???? Uhm, excuse me but I'm thinking that has TAX FRAUD written all over it. Is she trying to write off this pretend balance as a "bad debt" on her taxes perhaps? Whatever it is she is trying to pull is totally suspect; just like her "practice". I called her office and tried to speak with the bookkeeper, but there was a definite language barrier there. She couldn't understand half of what I was saying. She tried her best to explain to me that even though Dr. Griffith never actually billed me for the $2300 that she did work on our case and so that's what the charge is there for, but rest assured, I don't have to pay it because it's a credit to me like I should be thanking her for that.

Trying my best to keep my composure, because by now I have more than lost my patience with this "practice" and their shenanigans, I questioned her as to why a Doctor, who was fired for negligence and unethical billing practices, would be working on a file trying to drum up more charges? I surely never authorized any further work. Was she trying to come up with a new misdiagnosis to give us? I know it wasn't from ever actually speaking with Dr. Griffith on the phone because she won't come to the phone for less than $375 per hour and I never ever spoke with her on the phone before. So, what could she have possibly been working on besides her malpractice defense? I told the bookkeeper I wanted the statement corrected with the real and actual documented amount that I owed on it and not some random amount that Dr. Julie Griffith pulled out of her ass. Why not just put $10k or $15k down on my statement??? it wouldn't be any less true than her putting down that I owed her $2300.

I calmly wrote Dr. Griffith another Letter and sent it certified so that she can't say it was never received. How long can this woman, pretending to be a doctor, actually stay in business like this? I'm stumped. What's she going to do for money when I'm done paying her for our one "consultation"?

I also spoke with HIPPA last week and they are going to continue with investigating my complaint of how she illegally obtained Doodle's records 11 1/2 months after we had been seen (once) in her office as if she was our treating physician and provided them with an invalid request for information.

Back in Business!

2010-07-20T22:30:00.000-07:00

For one week now, since the Doodle almost broke his arm messing around in his "time out" baby swing and had to retire it, we've been virtually time out free. That's not to say the Doodle hasn't needed a time out or twenty--But with retiring the swing, we have been at a complete loss as to how to make him take a time out and actually get the full effect of a "time out". A complete "break" where he can relax and come back to reality from his moments of complete insanity or bad behavior.

We tried several different "chairs" from around the house. Big chairs, little chairs, wooden chairs, etc.

But, there were issues with the chairs...1). He could get out of them unless we physically held him in the chair and 2.) He would tip himself over in the chair (and hurt himself again).

Last night I was up at 3:00am catching up on my Real Housewives of New Jersey when it hit me to design my own "time out" chair that he could not weasel his way out of. A nice, large, comfortable chair where he could be restrained yet I would know he would be safe for his time outs.

Wait.

Wait for it...

Tah-Dah.

Am I brilliant? Yes that is ribbon and no it's not just for wrapping anymore.

It's a car seat harness sewed into one of his comfy chairs.

The best part is he actually likes to be strapped in tight; he's got sensory issues just like Temple Grandin. This is My version of a hugging machine. I have something even better in mind for my Phase II time out chair. It's going to be fancy.

Now don't go getting any ideas about manufacturing this great little concept, because...Patent Pending.

Wait until the Behaviorist gets a load of this...

Faith

2010-07-19T23:29:00.000-07:00

With the way I've been feeling and thinking about my life lately, how appropriate that this was sent to me today in my email from my Dad.

T h i s i s ' F a i t h '

This dog was born on Christmas Eve in the year 2002. He was born with 3 legs - 2 healthy hind legs and 1 abnormal front leg which had to be amputated

He of course could not walk when he was born. Even his mother did not want him.

His first owner also did not think that he could survive and he was thinking of 'putting him to sleep'. But then, his present owner, Jude Stringfellow, met him and wanted to take care of him. She became determined to teach and train this little dog to walk by himself.

She named him 'Faith'.

In the beginning, she put Faith on a surfboard to let him feel the movement. Later she used peanut butter on a spoon as a lure and reward for him for standing up and jumping around. Even the other dog at home encouraged him to walk.

Amazingly, only after 6 months, like a miracle, Faith learned to balance on his hind legs and to jump to move forward. After further training in the snow, he could now walk like a human being.

Faith loves to walk around now. No matter where he goes, he attracts people to him. He is fast becoming famous on the international scene and has appeared on various newspapers and TV shows. There is now a book entitled 'With a Little Faith' being published about him.

He was even considered to appear in one of Harry Potter movies.

His present owner Jude Stringfellow has given up her teaching post and plans to take him around the world to preach that even without a perfect body, one can have a perfect soul'.

In life there are always undesirable things, so in order to feel better you just need to look at life from another direction. I hope this message will bring fresh new ways of thinking to everyone and that everyone will appreciate and be thankful for each beautiful day. Faith is the continual demonstration of the strength and wonder of life.

Thank you Dad for sharing this with me. xo

Bringing it On

2010-07-18T23:24:00.000-07:00

I've been wondering about a lot of things lately that have to do with the Doodle-- so much so that I'm thinking about skipping the Behaviorist altogether and going straight to a psychiatrist and having him (and me) evaluated because of his OCD and my feelings about his OCD. It's really bad.

I look back a year and think wow, I thought it was bad last year...that was NOTHING compared to now. And, at this rate, what's it going to look like next year? Or five years from now?

The crazier and more compulsive he gets, the more confused, irritated, stressed and sad I get. So my latest bout of wondering has been, what if he feeds off of my moods and energy? Is that even possible? Why when I'm really stressed or have to get something done or am out in public does he seem to turn the crazy up a notch? It's like he knows. Just like when the phone rings and he cries and screams and acts like a lunatic. He knows what he's doing. He knows I can't do much about his behavior while I'm on the phone. He watches me run away from him with my hand covering the receiver and go into a closet or bathroom and shut and lock the door.

The other night I stopped by a friend's to drop something off and I brought the Doodle for a ride. I pulled into her driveway and didn't even turn the car off. I was just running to the front door and getting right back in to leave. He immediately began to scream and freak out, even before I got out of the car--all I had done was put the car in park.

I got out anyway. By the time I got back to the car (just a few feet away) he was in full on panic crazy mode--to calm him down, I let him get out of the car but I was praying to myself, please-please-please be good. Be good. And of course he wasn't. He went into full blown off the charts autism mode and the more I wanted him to stop, the more he wouldn't or couldn't. He was even doing new autistic stuff, things he's never even done before. It's like he could read my mind or the look on my face. So I put him back in the car and we left. I was so disappointed with how he was acting, because he isn't always that bad. And as soon as we left and got away from my friend (his audience) he was fine. Happy. Content. Then I think, maybe his behavior is his form of manipulation to get exactly what he wants and get all of my attention. Is he that smart and sophisticated to do that? Can an autistic child "play" you?

I've noticed, like tonight for example, I came home from working all day. He was happy to see me, I could tell he missed me. I brought him a new book and we sat and looked at it and he enjoyed it because I was 100% focused on him. I wasn't stressed out from witnessing his crazy behavior, I had a lot of patience with him because I had been gone for 8 hours. His somewhat "normal" behavior made me happy and so I wasn't anxious or tense being with him or wanting desperately for him to stop something and I was calm and he was calm and I was happy and he was happy. I'm not sure what that was all about and so it began my philosophy that maybe I'm the problem (or part of the problem) and that I bring it on myself. My constant nervous tension and level of disappointment combined with the projection of how bad things are or are going to get in the future because of all the unknowns is like some sick, twisted self-fulfilling prophecy.

I'm going to tell you a secret. Seriously.

This is something I've held in and haven't told many people in my lifetime. But the one thing that I used to stress about more than anything in the world during my pregnancies was having a handicapped or autistic child. I never thought I could handle it and I never wanted to try to see if I could. The first thing I said to the Doctors immediately following both of my births was, "IS HE OK? IS HE OK? "

So, what are the odds that the one thing I feared more than anything happened to me? About one in 90 actually.

But, was it a premonition, did I know and subconsciously expect it? Is the mind that powerful? Like the movie and book The Secret. Can you really will something to happen with your mind? People truly believe that if you have negative thoughts, negative things will happen to you and visa versa--if you have positive thoughts--good things will happen to you. Just like being able to heal yourself from an illness with the power of positive thinking.Or bringing on sickness with constant worry and negativity.

So was having my greatest fear of having an autistic child a lesson? A prophecy? Fate? Destiny, an inevitable event no matter what. Was it always out of my control--Was this God's Plan from the day I was born and nothing I could have thought or done would have ever changed this course?

Or was it random bad luck? Maybe something toxic I ate or the environment?

But just maybe it was a Gift and I was chosen for this?

It all depends on how you look at it I guess. Maybe once I finally learn to accept my reality, the disappointment and heartbreak will go away and I will realize there is nothing I can do to fix this and I will finally be at peace with it.

Makes Me Wonder

2010-07-15T00:39:00.000-07:00

I went to the bank the other day and when pulling out of the driveway, I stopped and let a group of guys cross. There were six or seven men in their twenties and at closer look they were all some form of special needs people except the Leader. The Leader must have been their caretaker, taking them on a walk or outing of some sort. The special needs guys all had the same look of oblivion on their faces and didn't seem to have any idea of where they were or what they were doing. They were walking, just like cattle might, with no mission or sense of purpose; not even really aware of each other let alone their surroundings. It was sad really; heartbreaking. They had no idea I was watching them so intently; studying them in fact. They had no idea why I found them so very interesting.

My mind raced and then I got a lump in my throat. I felt for a moment I might throw up; tears welled up in my eyes yet I couldn't break the stare. All I could think about was will this be my son in fifteen years? Will he be oblivious to his surroundings and going for walks with a caretaker, hopefully not pushing a cart? Will that caretaker be me? What will happen to him when I die? Who will love him? Will he have a purpose in life? Will he be productive and have any kind of self esteem or pride? Will he know right from wrong and be able to control his impulses or might he have to be institutionalized in a sterile and cold environment with round the clock care and therapy in order to contain him? Will he be a violent teenager and adult? Will he ever speak? Will he be abused if not under my protection? Will there be someone who will be especially kind to him or comfort him when he needs it? Will he be a ward of the State?

But my biggest question, the one that haunts me every single day and night is will he be happy and what, besides Doritos, will make him tick?

Undecided

2010-07-13T23:55:00.000-07:00

"If and When were planted, and Nothing grew." ~Proverb

July 25th will be here before I know it and I can't decide on whether to have a birthday party for the Doodle. He's going to be Four. For most parties, I get a sitter or have the Nurse take him away--because he gets so crazy and overstimulated and I can't relax or be a hostess. I need more arms to hold him and legs to chase him and Jimmy still thinks I have eyes in the back of my head which I really don't. So, I can't really have a birthday party for him and have him not here, that would be wrong on so many levels.

I think, well, I should just keep it small, immediate family and close friends--people that understand and get it and expect it and don't sit there with mouth dropped open to their chest when they see or experience his behavior; because if you aren't used to it or ready for it, it's a lot to take in.

Then I think, who am I really doing it for? And why? Is is out of guilt? Or just obligatory? It's not like the Doodle will know if he doesn't get a birthday party. As long as he gets a cupcake and to blow out birthday candles for a couple of hours and gets that birthday song sung to him over and over, he will be happy; until we distract him with Doritos and have to hide the candles.

But I do want to celebrate his birth and his little life; as hard as it was (and is). Maybe he's a miracle, and what's not celebrate about that?

Jimmy of course wants to have a Big Giant invite everyone party--

So I need to decide.

Mommy Rapsody

2010-07-12T23:17:00.001-07:00

Mommy Rhapsody from Church on the Move on Vimeo.

To See Him Smile

2010-07-12T21:58:00.000-07:00

Jimmy loves his little brother. I love it when they ham it up and the Doodle plays and interacts with him so effortlessly.

We had a little scare at the emergency room on Sunday morning. Seems the it might be time for the Time Out swing to go away. He's obviously way too big for it and we're not using it for it's intended purpose. He weighs 45+ pounds and the swing is meant for a child up to 20 lbs or so. He's been getting braver and braver and sometimes has no fear or idea of consequences and I think he's bored too. So he was playing around and standing in the swing the other night, holding onto the metal sides and some how flipped it over and fell down. I heard a crash and went running in there and the swing was on top of him and he was screaming and crying, a hurt kind of cry. I know he had to be standing in it or doing something because numerous times I have seen him and stopped him before something like this happened. You'd think I might have taken that as a sign to get rid of it, but it's honestly my only sanity around here. How do you punish a 3 year old autistic kid who has no concept of the term NO other than he doesn't like to hear it. Trying to do the right thing and nip some of the bad behavior with a time out is my only saving Grace. And it settles him. But to not be able to strap him into something, doesn't work. I can't sit there and hold him down and I certainly can't tie him up, although the thought has crossed my mind (just kidding).

So he fell out of the swing and either severely sprained or dislocated his right shoulder. He woke up Sunday morning and was screaming and holding it and couldn't move his right arm. It doesn't help that he can't talk so trying to figure out exactly where it hurt was a challenge. I felt so bad, because after he fell, I made him get into bed and he wouldn't go to sleep (like usual) and he was crying and kicking and I was getting so irritated and frustrated. I had no idea he had really hurt himself. That kid is pretty tough.

So to be sure nothing was broken, I took him to the emergency room. They x-rayed it and found nothing. The bonus of how double jointed he is, is that if he did dislocate it on the fall, somehow he popped back in...or he maybe he sprained it.

He's doing better now. He still has a hard time if he has to reach for something or put pressure on it, but it should heal on it's own.

Another Time Out

2010-07-09T22:54:00.000-07:00

The Doodle is not the only one getting time outs around here.

Coco is one bad kitty.