Welcome To Holland
************
************
By Emily Perl KIngsley
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 are 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 have dreamed of going to Italy."
But, there has been a change in 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. But, after you've been there for awhile and 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 supposed to go. That's what I had planned."
And the pain of that will never, 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 Son, Gabe
+++++
My son was diagnosed with Autism PDD- NOS in March of this year. I would like to say the "experts" were first to break the news, but I knew before they did. I just asked them to validate or confirm what I new was true. It scares me to think what would of happened if I had continued on believing what everyone was telling me. Some of you may relate.
"He's a boy. They all take awhile to speak."
"Your husband is a picky eater too, isn't he?"
"He's independent. That's why he doesn't play with the other kids."
"Does he have a hearing problem?"
"He must be tired. That's why he doesn't say hello."
We are still searching for the reason. We think it may help us better choose the appropriate path for therapy and intervention. I'm not sure if it was mercury, I had two RHogam shots with him (I'm negative and my husband has positive blood) and he had ALL of his shots before we knew. He was screened for heavy metals today. I'm anxious to find out the results. Genetically, as I look back now, my brother seemed a little different, not Aspergers, but perhaps on the spectrum. He was incredibly smart, but could never understand why people acted the way they did. He had a very difficult time fitting in. The chromosome test came back "normal" and so did the Fragile X. He did have low Neutrophils. He was also retested for that and we are waiting for those results too.
I eventually told my husband after a week of knowing Gabe had Autism. I didn't think I could hide anymore the late nights of reading on the laptop about Autism and crying by my son's beside as he slept. He had a hard time accepting that it just wasn't a developmental delay. He was so hurt. I will never forget the look in his eyes.
My son was born 7 weeks early, 6lbs. 9ozs, healthy, but had a hard time stabilizing his breathing. He was out of the NICU after two weeks and has not had any problems. We're still not sure about why he had come so early. I was healthy, read every book, ate healthy, got the "Doing great!" from my doctor. All I could think then was "Where did I go wrong?" We took him home and I was by his side for days listening to his breathing. I stopped crying the last day we took him home from the NICU. I thought we were almost out of the woods. Only one year to watch for developmental delays we were told. Gabe was diagnosed two months before his second birthday.
There are still people in our family that do not believe that he is Autistic. With all the testing and doctors appointments, I believe some of them think I am hypochondriac. But, when Gabe was chasing around a 7 year old today at Borders, grunting out of excitement (He has limited speech and some sign language) and I saw the look on that boys face of "Help!". Those are times when it's glaring in our face. But, I can't help but smile at how happy he was.
Gabe currently is 2 years old. He is in speech therapy once a week (We do a lot of reinforcement at home during the week), he was evaluated for PT, but found he is developmentally on target, Once a week for OT (Eating is Gabe's power struggle with us. It is a bit sensory, a sprinkle of stubborn, constant GERD and a hint of my husband) He will be attending a school this fall that focuses on ABA. I will attend with him in order to implement at home. We are looking into Floortime for the winter. Right now we use some of the guidelines and principles of Floortime with Gabe when we play with him. We did the Early On Program through our school district in the Spring, but eventhough the teachers were very nice, they had no clue or no resources to offer the services needed for a child that has Autism. (He was given 15 minutes a week for speech through that program.)I'm not sure if I will ever send him back. I have him signed up for dance class through our community (He is not happy with his tap shoes!What was I thinking. He does "tap" in his socks with all girls)and will have him enrolled in Gymboree this fall. I'm exhausted. Is anyone else out there tired too? The window is so small for the greatest impact, I am more than overwhelmed. But, I can not imagine doing everything in my power for my children.
