"Matthew and ... I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks 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 to Italy."

But there's been a change in the flight plan. 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 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 Rembrandts.

But everyone you know is busy 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 supposed 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 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."

My advice to parents is that neither of them tries to blame the other for messing up the tickets for the trip.  No one is at fault - especially your baby is not at fault.  Nor is your baby "faulty".

It is just that this was unexpected.  Your plans did not include going to Holland.  You had no interest in Holland.  But the decision that you face is that you are there.  You are in shock.  Not only do you have to change your whole life because you are now parents - you are parents of a child with a different neurological system than the baby you expected, and the baby that perhaps your friends and relatives are accustomed to being around. 

You have dreams for that child.  This is not  a time for pretending.  Once you get past the shock, you need to allow yourself time to grieve.   There are several stages of grief, including denial, anger, sadness, etc….then you reach acceptance.  If you get stuck along the way, get help. This is "make it" or "break it" time.   You must have a support system.  Your greatest support will be from one another.  If one of you is stuck in denial - get educated about autism spectrum disorders. Your child needs both of you at the acceptance level.  Once you get there, you are ready to find out what you can do to help your child.

I highly recommend several web sites to gather information from persons who are able to share with us, what this world is like for them.

http://www.autism-pdd.net/brad.htm

http://www.nes.scot.nhs.uk/asd/index.htm

http://www.udel.edu/bkirby/asperger/grandparents.html

http://www.autism-watch.org/about/bio2.shtml

Ten Things Every Child With Autism Wishes You Knew
http://www.southflorida.com/sfparenting/sfe-sfp-autism,0,6196233.story


I'll stop there for now. Are you getting the picture? They simply do not understand why we don't think, act, or react as they do. They are trying to survive with a neurological system that is just bombarding them with stimuli. Or they may be so caught up in their own survival, that they do not even notice how we act.