officially official

The news is out

it's officially official

Autism

Now, I am in the horrible position of defending a diagnosis I didn't even want in the first place.  Starting with the fact that Al is "high functioning".  We work with him every single day.  I am his therapy - fine motor development - speech and language - everyday to keep him from being miles behind his peers.  We've been just able to keep his head above water the last three years.  I deserve some help - advice - trained professionals - I want him to succeed and not just tread water his whole life.

I also don't want to explain how my son is autistic or what qualifies him as autistic. I don't want to tell you that Al can spin endlessly or he can't find the words multiple times a day or loves to crash over and over and over again.  I don't want to tell you he only uses lines from movies so he can contribute something to a conversation.  Because, your first reaction is to compare him to another child that you know that is "neuro-typical" and tell me this is normal behavior.  To reassure - to soothe -- to tell me everything is going to be alright.  I can really only begin to tell you the things that Al does differently than other children -- these are only pieces.  I now know first hand why Autism chooses the puzzle piece motto.

Al has now been seen by at least nine different specialty doctors and has had over 15 different IQ style test performed - we have answered piles upon piles of paperwork and questionnaires about our son.  I feel like I almost tried to disproved this diagnosis the last month -- trust me, I hated this label beyond words -- but my heart keeps leading me here.

Welcome to Holland

Tonight was my first autism support group

 

It was very tough

I wanted to walk out as soon as I walked in

 

Then she handed me this  - and I stayed.

    

 Welcome to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum. The Michelangelo David.  The gondolas in Venice. You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland"?!?  you say.  "What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going Italy."

But there's been a change in the flight plans.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language. And you will meet a whole new group of people you would have never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ... and you begin to notice that Holland has windmills .. and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy and coming and going from Italy ... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was suppose to go.  That's what I had planned."

And the pain of that will never, ever, ever, ever, go away ... because the loss of that dream is a very, very, very significant loss.

But ... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

tomorrow

 Tomorrow is the Day

of the

Official Diagnostic Test

Mixed Emotions

Would LOVE for them to say that they see absolutely no signs of Autism.  Then in the same choke-filled breath I want the official diagnosis - bring it on - I am ready for Autism.

 

Ready to know what makes my son different from his peers - ready to start the services and therapies - ready to be his biggest advocate - ready for the highs and the lows.

My son will thrive and amaze everyone who knows him. 

Then again - I am scared shitless.

Scared for his future. Scared that other kids will laugh at him.  Scared that he won't be able to find the words he is searching for.  Scared that he won't make a "real" friend. 

Scared Scared Scared

So scared that people will only see his Autism and they won't see my Al.

This sucks.

 

rules

I always follow all the f'ing rules. 

No drinking or smoking - absolutely NOT.  I would NEVER take even a sip of wine while pregnant - not when I am breastfeeding - nothing for years and years.  I didn't eat sushi or lunch meat or hot dogs or fish from Lake Michigan. I took my prenatal vitamins everyday. I went to all of my appointments and ultrasounds. I didn't take hot baths or hot tub or even super hot showers. Not even one Tylenol or sudafed or any pain drugs while given birth - I did every single thing the doctors and the books told me to do.

Why do I feel this overwhelming sense of guilt - As the mother - I should have protected him or done something differently.

I know in my head that Autism isn't about what I did or didn't do.

I need my head to tell my heart.

Autism

Al
 has always marched to beat of his own drum
Hell, he doesn't need a drum or beat to march
he has Autism
(The beat is already playing in his head)

The weight of this diagnosis
sits on my chest
like an elephant

I can't look back on our journey
the fact is we are here
and Autism is now

The uncertainty I feel for his future
scare me to death
and at the same moment
challenges me to be
simply amazing 

I have no plans of "fixing" my son
he is and will never be broken
to me or anyone who knows
how truly remarkable he is

Right Now
I am allowing myself to feel this

It sucks
Tomorrow might be better
or it could be worse
Today
Al was trying to tell me something
he bangs his forehead with his palm
 "Mom I just can't get it out of here - it's stuck"
Al
I promise you
It's alright budddy
Mommy will help get it out

it has been about two years ...

a lot has happened.

Leo has happened ... it took almost two years but we have finally finished our most amazing family.

I really couldn't be happier if I won the lotto ... I couldn't have pictured a more amazing life in my wildest of dreams.

Of course, it hasn't been all sunshine and lollipops ... we have hit some speed bumps on the way.

More to come ...

catching up in pictures

Balloonfest

Swim class w/ friends

Earrings -a few tears

4th of July

Sharkboy

Meme's pool

Birthday daddy

Bigboy room

After

Before

Arlo starts school

Ms. Jayme -new teacher

School tree

Sleepin boys

Vacation w. friends

Dance class

Halloween

oh, there is more...so much more

camping and good stuff

welcoming my self back

to keeping up with life