I've started reading

I want to remember this ... and share.

Jim Sinclair, a man with ASD who spoke at the 1993 Intenational Conference on Autism: "Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence... It is not possible to separate the person from the autism. Therefore, when parents say, "I wish my child did not have autism," what they're really saying is "I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead"... This is what we hear when you mourn our existence. This is what we hear when you pray for a cure." As a mother of a child with autism, I completely understand the feeling of wanting a "normal" child, and for the autism to "go away." But I understand now that the autism is what makes my wonderful boy who he is, and makes him so special.

decisions - decisions - decisions

I've never been in this position before

making a decision for one child based on the needs of another

Wait - I am lying - I have

I have asked My to give Al her lollipop
Al had dropped his on the ground

I knew she could recover from a lost candy - he could NOT

With the promise of two pieces of candy when we got home

My would happily give her lollipop up to her brother

Thank God I have a compassionate loving
 first born daughter

Only 21months apart

Al & My 

are very close

makes a Mom smile from ear to ear

This decision feels major today

I am sure I will look back in 15 years and think

Why did I agonize over this for months and months

I wouldn't stop second guessing myself

When a friend told me something amazing

When you have more than one child
one will always need you more than the other
You have to give to the one who needs it
There will come a time when the other
will need you more
and their time will come
and you will be there

I know that My will be successful and thrive
wherever I place her in the garden
Al is going to need something special grow
better light different soil
Keeping them together is more important
for our family

to be honest ...

to be honest with you

this whole process began 3 years ago

it started with my daughter's preschool

i had asked a teacher with over twenty years of experience

what she thought about my son - then almost two years old

these concerns continue to my pediatrician

then onto an early intervention service

which found only a very "mild" language delay

i worked my ass off to "catch him up"

dismissed at 3 years old - professional opinions stated - "on track with his peers"

brought more concerns to my doctor

compared and compared and compared him to other children

every child looking for a common thread

i finally had enough last summer - right after his fourth birthday

when i was handed back my money and told my child could not participate

cried

and this is where that story ends and how we began down a new path ...

today

Today someone amazing told me ...

Al is going to be alright.

He will have a job
get married
have kids
a dog

I cried.

Uncertainly for your child's future is a very scary thing.

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.