Some Light Reading

My day is trying to figure out what the heck the Doodle wants. It's become a game of charades that doesn't end so well.

I'm thinking about bringing this book with me to Disneyland for some light and enlightening reading. Oh but, wouldn't it be nice if reading this book could make it all better? Let's see, as I type this I have a possessed Doodle Bug laying on the bed next to me determined to take his pajamas off. We have to put him in one piece zip up the front footy pjs because he's really into putting his hand down his pants right now. He puts his hand in pants and gets his diaper all out of whack and then we have pee everywhere. So as I type this, he is determined to unzip his pajamas and get them off. All day, maybe out of pure boredom, he takes his clothes off and all day I'm chasing a naked Doodle around the house putting them back on him. He's even outsmarted overalls.

Earlier tonight he threw Papa Jerry's hamburger and fries on the ground. We've had maybe 10 throw himself to the ground temper tantrums today. I just walk away and ignore him when he does that but then he gets mad, starts huffing and puffing and then throws anything in his path on the ground. Then he gets a time out--locked in his swing until he can cool off or he forgets about it.

So now, as he thrashes around the bed, refusing to go to sleep and kicking the computer (I can see this is going to be a short post) I am getting more and irritated. It's bad enough I have to sit and watch episode after episode of Wow Wow Wubzy and that stupid Upside Down Show. I would love to call Super Nanny or Nanny 911 and have her come out and have a battle of wits with the Doodle. I think it would be really something to watch her try to fix some of these autistic related behavior issues.

The Count Down Begins

Just 3 more days before we leave for the Happiest Place On Earth. I will also be packing my Clinique perfume, Get Happy--just to make sure we have a good time. We're so excited around here about going to Disneyland, it's all Jimmy can talk about. Hopefully the Doodle Bug will cooperate and have a good time. The car ride ought to be quite an experience. Haven't suffered through an 8+ hour ride in the car with him in a while--he's a little more on the over-active side since 2007 when we last went. It also is going to suck paying for a ticket for him if he's not going to like it or behave. Hmmmm she says out loud, what am I doing?

But, we can't wait for a much needed and long overdue family vacation. We've got grammy and papa going along to help out with Doodle so that I can go on some rides and have fun with Jimmy and Jim. And my favorite cousin and her family are going too--and I always have fun with them.

So. Tired. But, So Worth It.

I haven't pulled an all-nighter in a while. God Bless Red Bull.

Today was the first of two days of my annual holiday gift boutique. It was a great success--although a lot of work. More work this time than I ever remember. I remember the good old days when I could crank out the baskets and crafts over a period of time. But now. With a Doodle running amok, it makes it a little less convenient to take my time getting things together. I can't take over the house with baskets and stuff for weeks before. Now, it seems, I need to slam it all together in 48 hours.

So, one down. One more day to go. I forgot what it felt like to have a store and as much as I miss it, working my tail off to do these sales once a year wipes me out and I don't know how I ever managed running a store at all.

Thank goodness for my mom. She was a huge help and stayed up with me last night until 2:00am pricing and putting things out. My visiting cousin from San Francisco even helped out with pricing and sweeping! I had quite the all night crew chipping in.

I had lots of people stop by. This year I'm donating a portion of my proceeds to the Autism Speaks Foundation. Let's hope lots and lots of people come by tomorrow or I guess you know what you'll be getting this year for Christmas from me. Right. A gift basket.

It was pizza for dinner a bath and I cleared a path through my piles of neglected dirty laundry to get to bed. But before I could turn around and climb into the bed I just made, the Doodle (who loves to open twist off caps now) reached over to the nightstand where I keep my bottle of water and dumped it out on my bed. On my side.

Good night...

Thanksgiving

Doodle Bug with his socks on his hands during the Thanksgiving Blessing.

We had a nice Thanksgiving with lots of relatives over this year at my moms house. It's so nice that all we have to do is walk next door and everything is magically prepared. The Doodle was a little manic, maybe a little more than usual because of the crowd of people or maybe it's because we've upped his dosage of Depakote-to try to control some of the night time seizures. Or maybe it's just our usual ramped up Doodle.

We had aunts and uncles and cousins and a ton of great food and Margaritas. All the Doodle would eat was the mashed potatoes. We had a little melt down and push-back from the kids about having to eat at the kids table. None of the kids wanted to sit at the kids table which was just four feet away. I remember always having to sit at the kids table and liking it.

So all in all, Thanksgiving was delicious and fun. It's nice to have a family to be thankful for and I'm very thankful for my family.

The New Al Bundy

Doodle-ism #59

Because don't all 3 year olds lay around the house watching cartoons with one hand down their pants?

Milestones

The Doodle is a great eater besides the gagging and sensory issues he has with some foods. Like most autistic children he has issues with textures. They call it sensitive pallate. Sometimes he'll come really, really close to throwing up but won't. He's been known to throw up entire meals. What's really scary about this now is that if he throws up too soon after having his anti-seizure medication we could be in big trouble--because there's no way to know how much medicine got into his system so you can't really re-dose him. The autism also causes him to be a really picky eater and O.C.D. on foods. He goes through spells where he loves something and that's all he'll eat. So, I go out and buy it in quantity and without reason, he hates it the next day and won't eat it any more. He hates it to the point of gagging.

Right now we're on a Doritos, Cheetos and Fritos diet. He is obsessed with chips. He wants chips for breakfast, lunch and dinner. At least the Fritos corn chips are gluten free and made with real corn.

We've been working on getting the Doodle to feed himself for almost two years. They've made HUGE progress with him eating independently at school. It's not that he can't do it--he always showed an interest, it was the throwing. Before, if you let him feed himself, he'd throw the spoon or the bowl or the container. It was too much work and easier to just do it for him. I know that might not have been the best choice but he wasn't getting the concept down to NOT throw. The word NO is somewhat lost on him. We didn't know if he was throwing out of compulsion and couldn't stop or just trying for attention.

So, the throwing behavior has improved. He's more interested in doing it himself than throwing it on the floor. And, he's really pretty good at it, especially when you consider he likes to eat his yogurt and oatmeal with a fork.

Lennox-Gastaut Syndrome

I'm trying to remain optimistic.

I'm looking at both the good and the bad.

The Good News. The Doodle hasn't had a head drop seizure while awake since September 11th!

Now the Bad News.
The Doodle has been having sleeping seizures again, and they've become more and more frequent. Today he had 3 just during his nap. Since he sleeps with us, I can count how many he has in the night because he's right next to me. He wakes up an average of 5 times a night with these weird sleep seizures. This is what it looks like:

1. He screams out, usually--but not always
2. His breathing gets heavier and deeper
3. His body stiffens up
4. His eyes open and roll back in his head

They last about 5 seconds, not very long at all. Sometimes he'll cry a little bit right after until he can be comforted and told it's going to be OK. Then he usually goes right back to sleep.

So something has definitely changed. He's been doing great with NO seizures during the day while awake. He's had a few "staring" spells where he's dazed off and stared, not sure if it was a seizure or not...mainly, he's only having these sleeping seizures right now.

Remember me? The Control Freak? The one who wants to know? Well, is the medicine working or just kind of working? Is the medication subsiding what might be a grand mal and just these little tonic sleeping seizures are breaking through? Or has something changed in his brain and now this is what he's getting?

I want him to have another MRI. It's been since last February and I want to make sure nothing has changed or there is nothing growing in there on his brain that shouldn't be. I'd also like him to have another sleep study eeg so that we can see exactly where and what these night time spasms are.

Since the Doodle was always a horrible sleeper--very light sleeper and he would always wake up screaming as if he was "falling". He would scare himself awake every day and night. The doctors think these were infantile spasms (seizures). This explains a lot. It wasn't until last January when he had his first grand mal seizure that I ever realized he could have been having seizures all along.

Scary.

While googling these sleep type of seizures tonight, I came across some information on the type of epilepsy the Doodle has. I was especially interested to see that besides the speech and development, behavior issues is also part of this epilepsy. Super. So it sounds like we can chalk up some of his behavior to epilepsy with a side order or autism and a buffet of side-effects from the anti-seizure drugs sprinkled in with Terrible Twos, ahem, Threes.

What is Lennox-Gastaut syndrome?
LGS is a rare and severe form of epilepsy. It occurs more often in boys than girls, and usually develops before the child is 5 years old. It accounts for up to 4% of all childhood epilepsy cases.

LGS can be caused in several ways, including problems with brain formation or head injury. Although it has many possible causes, in 30-35% of cases no cause can be found.

Characteristics of LGS
LGS is often difficult to spot. Many healthcare providers and caregivers do not recognize LGS readily. It is often identified by the following:

Experiencing several seizure types and sometimes many seizures in a day
Delayed intellectual development
A distinct brain wave pattern on an EEG

Challenges of LGS
Behavioral problems are common and often the biggest concern to parents and caregivers. Examples of behavior issues may include acting out, aggression, refusal to cooperate, hitting, biting, crying, jealous behavior, and insubordination.

Cognitive impairments are common in epilepsy. Cognitive effects may include attention, memory, learning, speech, language, and other functions.

B I N G O !

Date Night

While everyone was scrambling last night to catch the opening night showing of the new Twilight Movie, we went and saw The Blind Side. A perfect and fabulous family movie based on a true story.

Sandra Bullock was great--one of her best performances.

Our date night turned family night because of our ten year old...but I'm not complaining. I love that Jimmy wants to spend time with us now and is interested in some of the same things we are and I know it won't be long before that all goes away. And I'm glad he saw it because of the incredible message it sent. It was a movie that made us laugh and cry and we talked about it the whole way home.

It was everything I love in a movie including and especially TIM MCGRAW! It was inspiring, sweet and well written.

Grammy stayed home and watched the Doodle. I got the times a little screwed up so we had an hour to burn--we went to the coffee shop next door and had mochas and white chocolate cheese cake. And it was nice and relaxing.

Jim slept through the previews and I was afraid I was going to have to get my elbow ready to jab him when he started to snore but I guess the mocha kicked in and he was able to stay awake for the entire show. He liked the movie too.

In the Spirit

I'm getting ready for my big Holiday Boutique next weekend so the house is a pretty big disater with Christmas stuff and baskets every where. Even the cat, Coco is getting into the spirit of this holiday season which is too fast on the approach.

All I Want for Christmas

is a healthy, happy, talking Doodle Bug.

Betsy's Back!

Today we got our favorite and beloved Shape Assistant back, Betsy! We've been without her for about 5 months. She was the Doodle's Autism specialist for almost a year and formed a great relationship with him. He's comfortable with her and so am I. I've mentioned this before but sometimes it's hard having strangers in your house every day, even when the intention is for the greater good. Betsy fits right in and feels like part of our family; not any kind of intrusion. I love that I can be myself when she's here.

So she has big plans for the Doodle. She's going to be working hard on getting him to communicate with pictures. Maybe that will help with some of his bad behavior that's based on his frustration for not being able to communicate effectively.

The Doodle has speech and OT through his special ed classroom, although pretty limited. I thinks it's just 20 minutes each a week. But honestly, that's better than nothing. He finally will be evaluated for Physical Therapy tomorrow at school. It was in his IEPthat he should receive a PT evaluation back in August. Never happened. Finally, at a meeting with his teach the first week of October, I reminded her. She claimed she didn't know about it. But how is that possible I said--you signed the IEP, you were in at the IEP meeting. So, I busted out the IEP and made her a copy while she was at my house. She was going to get right on it. Flash forward to Friday. Still no PT evaluation, which means not Physical Therapy at all.


Did I call the Teacher? You know I did.

To make a long story short. She forgot. She said she forgot because of the Doodle's bad behavior because her focus has been on his behavior instead of his physical therapy. I called Bull Shit on that one. I told her to take some responsibility for dropping the ball and to stop blaming it on the autistic child. No one knows how bad his behavior has been like I do. I can barely stand it. But it's only been a couple of weeks of bad...bad. He wasn't behaving like this back in August, the first time the ball got dropped. And he wasn't behaving like this the first week of October either, the second time the ball got dropped. We had some words. Mostly my words. I told her obviously the Doodle wasn't a priority in her "medically fragile" class room and that what I had worried about seemed to be a reality, that he wasn't fitting in there because of his autism and behavior.

I was guaranteed and confirmed it with the Principal that he would get the PT evaluation he was entitled to. I haven't decided if I should push for 2 1/2 months of back PT for him or not. I hate being "that mother". But. And I have a big butt, I will be that bitch of a mom and continue to fight for that little guy, because he can't and if I don't, who will?

My Challenge

Things have always come fairly easy to me. While I've always been a pretty hard worker, it's been mostly easy. If ever I didn't like a job, I'd quit and easily find another. It's was a rarity that I would ever interview for a job and NOT get it. Skill? Maybe. Luck? Probably.

So I always felt lucky I guess. Reflecting back, school was easy and I got pretty good grades without even trying. I think now, wow--what if I would have really actually applied myself? What would have been possible?

Relationships for me have also been fairly easy. I've always been a long-term relationship person and have loved deeply and been loved. For that too, I am lucky.

Most all of my dreams have come true. How many people can say that?

So many abundant blessings for one person, I feel almost guilty. Like I didn't really deserve it.

Was it luck that we were able to get pregnant when we wanted? 10 years ago we had our first boy, Jimmy. And besides being adorable, smart, funny and kind--he was also very easy. It was easy and natural to love and nurture him. It was if I had been equipped with my very own Staples Easy Button.

When he started to grow up, Jim and I felt a sense of guilt for not having more children. We longed to have another child and to also be able to grow our family. We wanted Jimmy to have a sibling. And while we didn't go crazy about conceiving, we decided if it happened it was meant to be. So we through caution to the wind and by golly, I guess it was really meant to be, because we easily got pregnant with the Doodle.

Both of my pregnancies were easy. My first natural delivery was difficult with Jimmy and I had some subsequent medical issues--but I had a simple surgery and everything is fine now. But, because of the complications, we had a c-section with the Doodle Bug.

So for 38 years of my life--it was pretty much smooth sailing. Not much tragedy and just a little heart break, nothing that couldn't be healed with time, compassion and little chocolate. I've always been blessed with a really easy and comfortable life.

Then came autism.

And then epilepsy.

And they have moved in to my once easy and comfortable life and taken it over. I'm not feeling so lucky anymore. And it's hard to adjust. But what's even harder is watching the autism and epilepsy show no mercy on my little boy. I can accept that things aren't perfect. I can accept this new challenge. But it's heart breaking to watch how it debilitates my 3 year old.

Autism and it's good friend epilepsy now control not just one life--but the lives of our entire family. No more quick and easy trips to the store. No more easy to find a babysitter. No more good night sleeps. No more leaving the Cheerios in arms reach of an ambitious 3 year old. No more getting down without a helmet. No more parties. No more forgetting to lock the front door. No more eating out in restaurants. No more spontaneity. No more long drives in the car. No more calm. No more predictability, unless it's chaos that you predict...

Things have changed.

I'd actually consider my life hard right now, if you were to ask me. I'm adapting and learning and restoring my patience skills because as much as I love this Doodle, he is a challenge. My challenge. And I think about how easy I had it and how hard he's going to have it because of his development and just being different.

A Sense of Humor

Is it possible to have a sense of humor at such an early age? With parents like us, it's no wonder.

We've got all the makings of funny here.

Let's see, we've got...Striped pants.

A shirt that's riding up on his tummy.

A favorite pair of rain boots.

And, what else?

A fur hat.

The Doodle knows he can't get off the bed without his helmet, so I guess he grabbed the first thing close and it happened to be,

a fur hat.

(faux fur I should mention for any of you PETA peeps out there).

Sometimes I think the Doodle isn't autistic at all. He can probably really talk and he does these quirky things just to mess with us. He's just making sure we're paying attention.

Too Tired

Too tired to blog after chasing a little Terminator around the house. He goes from happy and calm to kicking and screaming in a matter of seconds.

Look how nicely he's sitting with his little hands folded in from of him.

From this:


To this:
You can't tell in this picture but he's kicking and screaming and flailing his arms to the point of a tray full of Cheerios going all over the floor. (I need a better camera).

I redirect him. You bet I'm telling him NO!!! But that doesn't matter. I take him out of the chair and while I'm cleaning up Cheerios off the floor he does this:

Then he runs away: Although he can't run that fast with his pants around his ankles.

He's very busy.

He tips things over, mostly furniture.

He turns things off, mostly televisions.

He puts things inside things that shouldn't be, like the washer or the microwave.

He throws things on the ground, pretty much anything he gets his hands on.

He dumps things out, all over the house.

He colors on things, like walls and televisions and refrigerators.

He takes things off, like his pants.

He opens everything he can including the front and back doors and then runs away.

He turns things on, like the bathtub or the dishwasher.

He breaks things on purpose.

He rips the glasses off my face just for fun.

He flushes things down the toilet just for sport.

He knows right from wrong. I'm convinced he seriously can't control himself.

Our cute, sweet little Doodle Bug has gone off the deep end and has taken his mommy with him. Welcome to my world of Autism.

Hope you're having a nice and relaxing Sunday. You know what I'll be doing today...

What's the Alternative?

See this giant bottle of pills?

The Doodle has to take 6 of these Depakote capsules each day. Every month we go thorough a giant bottle just like this one. And, he takes another anti-seizure medicine called Keppra which is much easier to give because it's in liquid form.

Every day, twice a day he gets his meds.

Ever try giving a child medicine they don't want? Now add the component of autism into the equation; kicking, screaming, knocking the medicine out of my hands, spitting it out, gagging and throwing up.

It's primarily my responsibility to give him his medicine. Jim or my mom will do it if they absolutely have to or if for some reason I'm gone during the times he is to receive it. It's a ton of responsibility and it's a production and it's not easy and it's definitely not fun.

I wake up every morning with angst and check the clock to make sure it's not passed his medication time. Every night, I begin checking the clock and I can't wait until 7:30 pm or 8:00 pm comes around so that I can get the evening dose over with. Once he's been given his medicine, I can relax a little bit; at least until morning time anyway.

He hates it.

And, I hate it.

And I feel like I'm poisoning him with all of these hardcore drugs at such a young age. But what's the alternative? We have to do it. Because the uncomfortable few minutes two times a day and the dreadful side effects of this medication is better than him having seizures all day and all night long.

Right?

The Punishment Fits Crime

How do you punish an autistic child that is so obsessive/compulsive you're not sure if he can stop himself?

What do you do when putting him in a chair or corner doesn't work for a time out because he can escape or tip the chair over?

You lock him in his baby swing. The one he's been too big for now for over two years.

And sometimes he's so exhausted from running around the house all day destroying things and wreaking havoc like the Tazmanian Devil that he craps out and falls asleep...drumming up more energy for later.

Good times.

The Strange Silence

If you're ever at our house and you don't hear anything for a few minutes that is not necessarily a good thing. A strange silence usually means of one of three things is taking place:

1. A pooping of the pants.

2. The Doodle is into something he shouldn't be.

3. Pooping while getting into something, a real bonus.

As much as I hate taking the Doodle's fun away, we finally smartened up and put a lock on the pantry door.
And while I really enjoy cleaning up full boxes of dumped out cereal and crackers all over the house, there will be no more of this in the bedroom...

The Doodle will have to concentrate his efforts on the refrigerator and freezer now.

We've Been Elfed!

Send your own ElfYourself eCards

I Said NO.

And, I'm going to keep saying it. It's hard this parenting thing;






















especially parenting an autistic child.

Lately the Doodle has been really hard. And behaving badly. And that's most of the time.

He's out of control and he's only 3.

You wouldn't know it by this picture but he's the Dickens.

I think he goes in and out of anxiety attacks and doesn't know how to deal with what he's feeling. You can see it coming on and sometimes there is no trigger or reason. He breathes differently. He gets overly excited. He runs around the house, flapping more than usual and then...

he throws anything in his path. I've seen him clear a table full of dishes. Sometimes it's just because he's been told NO.

He hates that word.
If you just met him you would think what a brat! Actually, even those who know him think, what a brat! But we cut him a little slack because of the autism and the seizures and knowing it must be hard to be a Doodle Bug.

His teachers and nurse think he must be getting frustrated because he can't communicate and talk. I think that might be part of it but it's hard to tell what is bad behavior and what is autism. The lines are so blurred I don't know which end is up anymore.

We seriously chase him around the house telling him NO. All he hears from us all day long is:

"No. Stop it. Put that back. Don't touch that. Don't you throw that. Knock it off. No more. Get back here. Get out of the refrigerator. Stay out of the oven. Close that. You want a time out? Go in the corner. Stop!"

They have a rule at his special ed preschool where they do NOT tell the child NO. Excuse me? They try to do positive reinforcement and redirect the child and they feel NO is too negative. I'm sorry but NO is NO and is part of life and I'm not on board with that one. What am I protecting him from by not telling him NO? Did the word NO ever kill someone? Does hearing the word NO guarantee you a place at the Therapist's office? When my child does something he's not supposed to, guess what? He's getting told NO and sent into some kind of time out. Even if his time outs are only for 3 seconds, at least I'm making an effort.

The Doodle knows when he's doing something wrong. He knows right from wrong. He looks at me with such contempt when he's doing what he shouldn't--be it ripping a book, playing in the oven, escaping out the front door or throwing something on the floor. I truly think he lacks any self control and is very impulsive, maybe that's the autistic part. He can't stop certain actions and needs to finish or he gets a little nuts.

It's gotten to the point where I look forward to bedtime. At least when he's in bed, he doesn't have his helmet on and he knows he can't get down (although now he's getting down anyway). He lays on the bed and then we go through some more bad behavior until he poops out and gives into sleep. Ahhhhh, a sleeping Doodle--but there's only calm for a little while; until he wakes up screaming or startles himself with one of his episodes that I still don't know if they are seizures or not.

And then we wake up and begin the whole bad behaviorness (is too a word) all over.

Motivation

Oh the irony.

Not to depress you but, I was watching an ad the other day on t.v. for an anti-depressant. Either the Marketing Wizards at Pristiq are speaking to me directly through the television or maybe I am imagining my symptoms of depression. It was asking me...

Do you feel you have to wind yourself up just to get out of bed?

Uhm. Yes.

Other symptoms they say to look for to see if you are depressed...

Irritability (check)
Hopelessness (check)
Trouble sleeping (check)
Low energy or fatigue (check)
Significant weight change (check)
Difficulty concentrating (check)
Loss of interest in favorite activities (check)

I'm always irritable. And not knowing if the seizures are coming back or if the Doodle is going to ever talk and not being able to control some of these things has me feeling a little hopeless.

I always have trouble sleeping, of course that could be because I sleep with one eye open and am checking on the Doodle twenty five times a night--especially now that he is screaming out. It doesn't help that he's a back kicker and has to be laying on me, touching me and that I don't have much space to sprawl out and get some real R.E.M. sleep.

Lately, I have had really low energy and been fatigued. I don't think it's related to my flu--but they could be related or maybe it has to do with being kicked in the back all night long.

Talk about significant weight change, I'm the poster child for weight gain. Significant Weight Gain. I used to be thin. I've tried everything and can't seem to shake these last 60 pounds...it's as if my metabolism has completely stopped working altogether. I've considered it possibly early menopause, thyroid condition or hormone imbalance because even my hair has been falling out. They say stress can make your hair fall out. If falling out hair and weight gain doesn't throw a person into depression I'm not sure what will.

Difficulty concentrating? Sometimes, especially when I'm writing, I get a little...hmmm what's that word? What was I just saying? Where am I?

And I have a definite loss of interest. Working from home, gaining weight, balding and having an epileptic autistic toddler to deal with makes it difficult to want to go places. I used to be really outgoing; the life of the party. Funny. Witty. Social. These days, you will find me most comfortable laying in bed, wearing elastic waisted pants, no bra, watching a movie with a troft of popcorn and a batch of home made chocolate chip cookies on my chest.

Hmmmm. The weight gain is suddenly making sense to me now.

So, I go back and forth alternating my depression symptoms. Some days are worse than others but isn't that just life? I've never taken a pill for depression. The list of side effects are enough to depress you. But what if there is a magic pill that could make me feel better, give me more energy and hope? Take away my irritability.

I've become so used to feeling like this that it scares me to think it can all go away with the administration of a prescription. If you read the fine print on anti-depressants it links suicide with the therapy of anti-depressants. What? Isn't that the opposite of the treatment working? I would hate to go from feeling a little irritable, tired and fat to suddenly wanting to end it all.

I've tried counseling. It takes too long. It takes too long to get the therapist up to speed with all that is going on and what might have brought you there to begin with including rehashing your childhood. It ends up being a chore to go. When I have a free hour to myself, child-free, I want retail therapy, not to be sitting on a couch with a stranger staring at me, judging me and agreeing with my every word while watching the clock for the 50 minutes to be up. Therapists are really just there to listen and that's not what I need. After all, I have a blog. It's practically the same thing. It's all too complicated and I would usually leave the therapist's office feeling worse than when I got there.

Cousins, Nephews and Uncles

We had visitors today and Jimmy couldn't have been happier.

Two of Jim's brothers and his nephew and great nephews came over to ride dirt bikes, play basketball and have a bbq. The Doodle loved being outside watching it all and being a part of the excitement. I'm not sure what it is about visitors but it makes the Doodle poop. He did three grumpers today. I'm going to take that he must be comfortable around them...

Our Little Doodle

Colin

Jimmy

Ryan

Ryan and Corey


Tim and Jim

So there was riding and playing and eating and a lot of male bonding taking place here today. Where we live, kind of out in the country I guess you might say, we don't have many neighbors with kids Jimmy's age for him to play with. The only time he gets a play date is if we bring someone home after school.

So this was a nice way to spend a Sunday. The brothers all live pretty close and he likes it when he sees them even though it's not that often because of everyone's busy lives.

Where does the time really go?

It's the Little Things

Like being able to put on your own shoes when you want to go outside.

Like learning new things.

It's baby steps to becoming independent.

It's trying it again and again until you get it right;

And getting the right shoes on because sometimes you'd rather wear Mom's shoes.

It's about being able to make decisions and choices.

It's about being a big boy.

Crew Cut

I'm a procrastinator when it comes to difficult tasks which is why the Doodle's hair has gotten so shaggy.

I can only muster the energy up about every 3 or 4 months to cut the Doodle Bugs Hair. I have to really focus, psych myself out and just go for it. Drinking a Rock Star right before the hair cut does help a little bit, I drink the Rock Star, not the Doodle. The Rock Star acts as a stamina builder and gives me that extra edge I need to get the job done.

But of course the Rock Star doesn't help to steady my hand, as you will see in picture of the Doodle's hair. I wish I could just get the clippers out and buzz cut him but the sound and vibration of the clippers is too much for his little brain to handle...it freaks him out so bad I'm afraid it's going to throw him into a seizure, so I do it the old fashion way. With scissors.

The Doodle doesn't look very happy with my handy-work.

I can't believe how old he looks with his hair cut.

An Anniversary of Sorts

November 5, 2007.

There were a lot of tears that fell on that day. Fall of 2007 will be forever burned into my memory as a time when my life changed.

November 5, 2007 was the day the Doodle Bug was officially diagnosed as being on the autism spectrum. Even though I already knew, hearing those words from the Doctor was heartbreaking.

And sobering.

And confusing.

And unpredictable.

But I already knew. In my heart I knew something wasn't right. No child is that fussy and quirky and hard to understand and behind; which is why I made the appointment to begin with. So why would I be so upset with the diagnosis? Because when you have a child, you only want the very best for that little person. You set it up from the moment of conception. For nine long months you imagine how things will be when he's born. When you're given a diagnosis of autism, that changes everything. You don't know what will be in store for you other than what you've heard or seen on Oprah or caught on the tail-end of a documentary. You know you are going to have your work cut out for you that it's going to be harder.

You imagine the worst. You do your best to not to try to think about it or to have hope and be optimistic. Will he ever talk?

And then as the days and years go by, you tell yourself it's just taking longer than it was supposed to. That he will talk. He will talk. Right? And then the flood of questions...

What if never talks?

Will he ever go to a regular classroom?

Will he ever be able to take care of himself?

Who will take care of him when we're gone?

Will he ever find true love?

Will he be OK?

I know a lot can change in the years to come. And I hope and pray every day that things won't get worse. As devastated as I was about the autism and as long as it took me to process what it meant, it was a grieving experience for me. I was grieving over losing my idea of "normal' and what that was supposed to look like now and in the years to come.

Then when the epilepsy showed up in January, it knocked the wind out of me. I wasn't ready for it. I was too busy being burdened and devastated by the idea of autism. So, in a way, the epilepsy knocked some sense into me. It showed me that's it's true, "you shouldn't sweat the small stuff". I had been worried and depressed and then the seizures came along and shook me to my core almost screaming at me...."Oh Yeah? Forget about the Autism...Here's something to really worry about!"

It took the autism from Giant Worry #1--I can't think about anything else to...who the hell cares. The medical issues, seizures and complications far outweigh the developmental delays.

So now, I don't feel the same about the Doodle Bug and his autism. I have had 3 years to fall in love with this little man, quirks, tantrums, developmental delays and all. He is one of the most loving and cuddly little autistic people I have ever met and I know he loves me just as much as I love him, completely unconditionally. He's so pure and although devilish, he's just an innocent little 3 year old who doesn't know there is anything different about himself.

Two years have passed and it's taken me some time but I have fully accepted and embrace my little Doodle Bug, his autism, quirks and all. And when I clear space in my heart that used to be filled with disappointment that I don't have a completely normal child, it allows me more space to love and cherish who he is and who he will become. My days are no longer filled with the idea of trying to "fix" him. For whatever reason, this must just be who he is supposed to be. His destiny will be that he was a little man born into this family to remind us of our life's blessings. A little man sent here to teach us patience, understanding and unconditional love. A little man to remind of all that is truly important.

This doesn't mean I don't have hopes and dreams for him. I always will. I believe in him.

Top 10 Doodle Bug Career Choices

Watching our little maniac arc around the house all day destroying things has brought me to wonder what he might be like in five years, or ten years or fifteen years. Will he always be throwing things on the floor and tearing books? Will we have to confine him to a padded room when he's nine?

Even though he's only 3 years old, I've come up with some possible career choices for the Doodle Bug:

1. A Mailman or Gardner since he loves to push carts.


2. A Doorman since he loves to open and close doors.


3. A Chef since he spends so much time in the refrigerator and the pantry.


4. An Artist since he enjoys coloring on the walls, tv, fireplace and furniture.


5. Hugh Heffner since he loves being in his jammies.


6. A Male Stripper since he can't keep his pants on.


7. An Operator since he loves to push buttons on things and turns lights on and off.


8. A Movie Theater Attendant/Ticket Tearer since he loves to rip things in half.


9. A Circus Act since he is such a little dare devil and has no fear of heights.


10. A Star Running Back because he takes things he's not supposed to and runs so fast and can maneuver through things so well. And because he likes wearing his helmet.

Whatever he decides to do in life I'm pretty sure he will be working the grave yard shift since he's a little insomniac with a sleeping disorder.

Zero to Bratty in 3 Seconds

The Doodle has always had a mind of his own when it comes to wanting what he wants when he wants it. The term "patience" is completely lost on him; he can't tell when he has to wait five seconds or three minutes for something he wants, it doesn't matter--it's a wait and he doesn't like it. Something else the Doodle doesn't like is to be told NO.

Lately we have had the Devil reincarnated in the form of a Doodle Bug. He walks around the house just looking for mischief to get into. You can see it in his eyes. And when you try to redirect him when he's acting out or you try to get him to deviate from his evil little plans, he melts down and has a lovely tantrum he does where he looks for the most damaging thing he can throw onto the floor. If there is nothing too readily available to destroy, he will throw himself on the floor.

His new favorite thing to do is get things out of the refrigerator, freezer or pantry. He's a dumper. He likes to dump things out. He likes to run with things he's not supposed to too. He runs away, down the hall and into a bedroom and looks you straight in the face and slams the door as hard as he can. He thinks it fun. He thinks it's a game.

Terrible 3's? Yes. Autism? Perhaps. Degenerative Genetic Personality Disorder? Hmmmm.

After one of his zero to bratty in 3 second tantrums, he quickly recovers but we make him stand in the corner now. All we have to say is, "You want to go in the corner?" or "That's it! Go stand in the corner". And he runs right over to the corner by the front door and he puts both hands on the wall and he looks at us to make sure we are watching him and he stands there for a bout 3 seconds and then comes out - smiling that devilish grin, scanning the house for something else to break into pieces or get into.

Bring It On Dr. Julie Griffith!

I got a little visit from the Sheriff's Department. Nothing gets the heart rate up like answering the door to see a uniformed Sheriff standing there and their Sheriff's car parked in my driveway. Of course the first thing that popped into my brain was that Jim had been in some kind of terrible car accident and this was my notification...or that maybe there was some kind of Short Bus accident and the Doodle was killed. Or that there was an incident of some kind at Jimmy's school, maybe hostages were taken...but No, thank goodness it was none of these things. I was just being served Small Claim's Court Papers by that Nutcase who calls herself a Doctor in Marin, Dr. Julie Griffith.

This is the doctor who tried her hardest to alarm us and who misdiagnosed the Doodle as having a severe birth defect and brain malformation called Dandy Walker; which was later discovered after three more opinions that HE DID NOT HAVE IT--after many sleepless nights. This is the doctor who charged me $1687 for an initial consultation and refused to bill our insurance. This is the woman who over-dosed the Doodle by putting him on 2 additional anti-seizure medications in April where he could not walk or function, sat in a chair staring at the wall, drooling and started having a brand new type of HEAD DROP SEIZURE, then refused to speak with me about his adverse reaction to the medication she prescribed him unless I paid her $400 per hour for a phone appointment!!! This is the doctor who told me the Doodle was not autistic but might have Lyme disease and another genetic disease, which according to her meant that my mom and I both had too. All of these incorrect and devastating diagnosis ended up being a ploy on her part to get us to come back into her office for $500 per hour so that she could "explain" our diagnosis to us. PUH-LEASE.

I filed a complaint against Dr. Julie Griffith located in San Rafael, CA with the California Medical Board with regard to her unethical practices.

Since my mom had put the $1687 charge on her credit card, after we discovered what a FRAUD she was, we disputed the charge. After 5 months of back and forth and having to prove our case to the credit card company, including providing a statement of misdiagnosis from our real neurologist, we won the dispute and did NOT have to pay this negligent and crooked doctor one cent.

So. Now she has decided to take me to small claims court. I CAN'T WAIT. After getting over the initial, HOW DARE HER...I am actually thrilled to get to face her in court. It is my hope that the Judge will see her actions as negligent and borderline criminal and come to a decision in our favor.

I have already heard from a few other people, after the fact, that Dr. Julie Griffith is a money grubbing alarmist doctor. Dr. Julie Griffith is a DAN Doctor, one of the only DAN Doctors in our area - which is how I came to find her. DAN stands for Defeat Autism Now, and DAN Doctors work specifically with Autistic Children in attempt to "recover" them with diet, vitamins, detoxification and the like. DAN Doctors test the children for things like metals, food allergies, vitamin deficiencies, bacteria, yeast build up, etc. It is disgusting and appalling to me that this Doctor preys on the vulnerability of parents with children with autism and special needs. She gives parents the false hope that their child can be cured of Autism if they see her for weekly appointments at $500 per hour and buy her overpriced supplements and pay thousands of dollars in lab testing for things like Lyme Disease.

Dr. Griffith ought to have her license suspended for her misconduct, not just with me but other people as well. She has no business treating patients, especially innocent children.

I am not afraid of confrontation, especially when I feel I am in the right. I am actually counting down the days to see this Woman, who has the audacity to call herself a Doctor, in court; she has no idea who she is engaging in battle.

Daylight Savings

It takes my brain a while to adjust to the changing of the clock. My eyes see that the clock clearly says 7:02 pm but in my heart, I know it's really 8:02 pm. I will play this game with my self for a few days until I forget about this whole daylight savings thing and stop remembering what time it really is.

Jimmy got a Wii for his birthday. So it's been nonstop Wii fun around here; add candy for breakfast and you have the makings of a happy 10 year old.

This weekend went by way to fast. I need another 9-12 hours in the day to feel like I can catch up. And wouldn't it be nice to designate five or so hours more of sleep each night. I'm just saying.
Sundays are great for doing a whole lot of nothing. Went to a matinee today, it's hard to top Vince Vaughn and chocolate. Then we stopped by the grocery store and I made a taco casserole. Stay tuned for more excitement and random ramblings from Doodleville.