Thursday, November 12, 2009

Parent Training

My son's autism preschoool has parent training nights and I think it is so wonderful because parent education makes all the difference. Tonight after coming home from one, however, I have to admit I am alittle frustrated. Some parents were discussing "the diet" and basically putting down biochemical intervention. It was obvious that they had not tried to educate themselves on it. I told them I have been doing biochemical intervention for a year, I told them about the monumental difference (his social smile, understanding discipline, etc.) I said there is a book they can read, (Changing the Course of Autism, by Dr. Bryan Jepson,) and that I am willing to talk to anyone about it. After that I tried to keep my mouth closed. It was hard because I feel like even if they choose not to do it, they should not discredit it. To me that is wrong. One parent approached me afterward, and she understood exactly how I felt! "Some people are so ignorant about food," she said. I can't explain how relieved I am that there is another parent like me in the group and I look forward to talking to her again on the subject.

One of the handouts we got tonight was a little story. I read it once in Jenny McCarthy's Mother Warriors book, and I have to tell you it never looses significance for me. I think the author got it head on.


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 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 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.


John Toft Basketry said...

Thank you for the story and your comments about others' reactions. Its a long journey and one with so many ups and downs.

I will post a reference to your blog on the autism support list of Ottawa. This is a local network where people share their thoughts and insights in connection with autism/


Celeste Jean said...

Thank you John.

Marion Pusey said...

I am a mother of a 25 year old son with autism.
Eric was and still is a "visual learner".
You can see an article with pictures of Eric and some of the
pictures he has done in the CELEBRATE section of:
Link to article with pictures:

Because of the above and for the love of Eric and wanting to help other families,
I created my business
Picture Card Communication

I create and make personalized/individualized visual resources
and educational materials for people affected by Autism and / or
other disabilities where communication is affected and their
families, teachers, therapists, care givers, etc.
These products are good for children who are "visual learners".

Marion Pusey

Corri M said...

Thank-you for the analogy. I have often been asked about living with a special needs child. Your comments really let the listener experience and understand your perspective. I hope you don't mind it I share them with out parents.


Celeste Jean said...

I am glad to be helpful. Emily Perl Kingsley is the author of the story. I thought it was just amazing and had to share it here.