Day 21, Letter U
[Thursday April 24th 2014]
I’ve struggled to articulate to others what the autism journey is like. One of the reasons I blog is to share our experience and to educate others. I want people to know what autism is and I especially want them to know what autism isn’t. Upon receiving her diagnosis, Keith and I looked up theories and remedies, with no definitive answers; it is was overwhelming and at first I will admit I felt an emptiness. There is so much to learn to deal with and the stress is high. In a marriage and in a family, tough feelings are tossed around. A recent study confirmed that autism moms have stress levels consistent with soldiers in combat as we often live our lives bracing for the next obstacle. I feel that Autism has in a way, separated us from the rest of the family. Negative feelings like guilt and sadness I believe are inevitable when dealing with some of this. I have been blamed in the past – on more than one occasion for not ‘curing’ my daughter, it was very hurtful at the time but inspired me to tell others through blogging, what Autism is because the placing of blame is from someone who obviously does not understand autism. It’s important not to believe everything you see or hear about Autism- the media has a way of warping any topic. I’ve read reflections equating autism to an unplanned trip to Holland that I especially found comforting when I first suspected that Alexis had Autism.
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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy a new guidebook. 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, 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.” The pain of that will never, ever, go away, because the loss of that dream is a 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. ~ Written by Emily Perl Kingsley
Even if the road is bumpy sometimes and often we need to take a detour or two, Autism has added greatly to our lives. It gave Keith and I an indescribable feeling of joy to hear her voice as she learned to start speaking, she is getting more and more verbal, we are SO proud of her. She is very earnest in her art projects with paper as well as creations on the computer. I have a section of this blog dedicated to AUTISM ART that features some of her incredible work. I will always give my time, my heart, my voice and my skills to causes that seek to find answers to this lifelong condition. I am planning my second fundraiser for Autism Awareness in my community, this is something that is very important to me, last year it was a great success for this cause, it made me feel very proud when sometimes I am too busy to feel such a way. I am glad that Autism became a part of my life, it really has changed me as a person- for the better!
Subtract Sundays from April, you then have 26 days–one day for each letter of the alphabet. Start beginning Tuesday April First 2014 with a topic themed on something with the letter A, then on April second another topic with the letter B as the theme, and so on until you finish on April thirtieth with the theme based on the letter Z. The theme of the day is the letter scheduled for that day on http://www.a-to-zchallenge.com