ABA therapy, IEP, VB-MAPP, gluten free diet, caseine free diet, vitamin B shots, detox foot baths, chiropractor, homeopath, muscle testing, 23 different supplements to take every 3 hours ( good luck finding a way to get them into your gag reflex prone child who won't swallow pills), neurologist ( who has no suggestions), hippo therapy, collect the pee (how?), now collect the poo ( easier), another blood draw (UGH!), cranial sacral, speech therapy, augmentive device, PECs, autism conferences , prompting, fading prompts, potent reinforcers, data, lots of data, environmental trigger, tantrum, LOTS of tantrums, what just happened to trigger the tantrum?, florescent lights flickering?, too noisy?, too many people?, itchy tag?, new location?, change of schedule?, no idea? ( often the case, especially once they hit puberty), think outside the box, vaccines, no vaccines, ear infections, thrush, excema, Temple Grandin, lots of books ( some give you hope, others not so much, mostly you get overwhelmed by what you need to try), other parents in the same boat, THANK YOU God for the other parents as they have the most information and they understand us without us having to find the words to describe what we are going through, and $, LOTS of $.
I realize that that paragraph probably has many terms that need explaining and I could probably write a novel on each concept. I actually feel an awe for my former self that had to deal with all of that. So I'm going to give myself a little hug for still being married and for coming out the other side still intact :)
I have shared this wonderful essay before and love it so much that I will share it here. It is written about parenting a child with special needs but I feel that it is relevant to any challenge that you have been graced with.
Welcome to Holland by Emily Perl Kingsley 1987
I am often asked to describe the experience of raising a child with a disability- to try and 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 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.
9 comments:
I had days where I felt we were all in Sarajevo, haha...but Holland was a wonderful view of the world...And, unfortunately, I understood all those terms...keep writing, Kathy, you are a wonderful writer...xo
Keep writing, Kathy...reading along wi
Wow! I have not read that one before. I love the analogy. Thanks for sharing!
More impressive is that you can remember all of those things in the first paragraph because I cannot remember last week sometimes! Keep writing!
Dana...I love your comment about Sarajevo. It has instigated the title for this post and also has me brainstorming an autism version of that essay :)
It's a great analogy, isn't it? Certainly something that everyone can relate to. Not so sure that autism has very many tulips in the early years but they sprout eventually :)
Totally agree Leigh! I have NO idea what I did a few days ago and need the calendar to remind me. Once I started picturing all the therapies...the memories stared flooding back. Thanks for the encouragement!
OK...a vent-o-rama here...but, I am steaming and stewing about the new statistics from the CDC...1 in 62...or another translation... 1 in 42 boys...1 in 189 girls.
The skeptics will say we are just diagnosing better...for the sake of argument, let's say we are...does it make this any less of a crisis?
My son experienced great discomfort and difficulty in his life...in the end, I believe autism took his life...when can we have some real answers?
The new numbers ARE staggering! My only solace is knowing that research is being done....but it doesn't feel like the world views this like an epidemic the way a tiny measles outbreak is.
I think you might be right about autism taking your Henry. Would you be open to being a guest blogger one of these days? I'd love to share about Henry.
Yes...I would be honored to blog..xxxooo
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