I wrote part of this diary on April 2nd, which was World Autism Awareness Day, but wouldn't you know it, life got in my way and prevented me from finishing it and publishing it on the 2nd. I decided to finish it anyway, since this diary has been on my mind for awhile. So, if you would be so kind as to pretend that it is April 2nd. Thank you.
Happy World Autism Awareness Day, everyone!! Is it upon us again?
My very first diary was for World Autism Awareness day, four years ago. How time flies. It's kind of wonderful to look back and see what was on my mind today for the past four years.
Here are links to the other diaries, if you have a fancy to take a peek:
World Autism Awareness Day 2011
World Autism Awareness Day 2010
World Autism Awareness Day 2009
Back in the heady days of our youth, before we had kids, when we were full of nothing but our love for each other and adventure, my husband and I had a lot of dreams. I'm sure it was nothing unique about us; most kids in their 20's are full of dreams for their future.
One of our favorite pastimes back then (my son often labels this, "The days when you were happy, before we ruined your life." He's a cynical one, my 13 year old.) was to lie around and think up all the things we were going to do with our lives. As we made decisions about graduate schools and job choices, the dreams changed accordingly, so we always had a lot to talk about.
We were going to travel the world. We were going to have a family, and we would all be globetrotters. We named all the places we'd like to live, all abroad, of course. Our children were going to be articulate, and sophisticated. Our lives were going to be a frickin' Ralph Lauren Polo commercial!
Some may say, thank goodness you were rescued from that ridiculous, really pretentious dream by, well, life. Meaning a family. Having kids, like everything else in life, is a crapshoot, and like the Spanish Inquisition, no one expects to have a disabled child.
Life had very different plans for us. The problem is, we didn't plan for those plans which life planned for us, we planned for different plans. You see? And by the time we figured out that our life wasn't going in the direction we thought it was, we were mid-course. Turns out we are not as maneuverable and light as we thought. We changed course as best as we could, but we ended up kind of trapped in a strange tack, neither going in one direction nor the other.
I've exhausted my sailing metaphors. Point is, we were trained and prepped and already in a job path that involved a lot of travel and/or residing in foreign countries, where autism isn't quite as prevalent as it is here, and so they have no idea what to do with a girl like Ellie. So we stayed in the States, which was much better for Ellie, but left my husband in a quandary, career-wise. In order to stay in the States and remain employed, he has to travel a LOT, and we have to move to follow jobs. It is, shall we say, less than ideal, but at the same time has been not as bad as we thought. Every time we moved we found what is good in a special needs classroom and what is bad. What to seek and what to avoid. We've learned to be flexible and recognize that things have a way of more or less working out not matter where you are. There are always good things and bad. If you stay in one place your whole life you tend to think that things can only be good right where you are, and that anyplace else will be bad. But that's not true.
The good news is, my husband and I still dream of the future. Our dreams are entirely different than the young dreams. They don't involve gondolas on the canal or dinner at our favorite Parisian restaurant. Our children are growing up, our oldest is starting high school in the fall, and we know they'll be out of the house before we know it. We think about retirement, but now retirement involves three of us, instead of two.
People tell us that kids with autism can change so much, and Ellie has changed and learned and grown over the years, but one thing remains constant about Ellie. She does not inhabit the same sphere of existence that we do. She is elsewhere. She has been since she was born. I don't see a child like that ever living independently, so the choices for her are a residential placement, or living with us. I'm aware that we will eventually buy the farm, it happens to the best of us. But there are options, and this is where our dreams live these days, in those options. They are not, you will notice, urbane and sophisticated, but quiet and domestic. That's ok. We've changed. A lot.
Here are a few of them.
1) We move to a small artist's community in Mexico. My husband is Mexican, my daughter is an artist, it's a cheap place to live.
Downside: what happens to Ellie when we buy the farm. Not many residential facilities for autistic adults in Guanajuato.
2) We move somewhere in the Midwest and buy a small farm (different kind of buying the farm, where does that expression come from, why does "buying the farm" mean dying?). We learn to make cheese. Ellie can help out on the farm and have a barn all to herself to create her creations.
Downside: Could be hard to find someplace for Ellie to live, but you never know. We could research that before we buy the small farm.
3) We find a great residential facility for Ellie, where she's happy and they let her do her thing. We find a little cottage nearby and are able to see her every day and take her out whenever we want.
Downside: Good luck to us finding that facility. Also, Ellie hates people.
4) Okay, here comes the big pipe dream. We're back to buying the farm, not as in dying but as in purchasing a property where animals and humans reside together and some kind of foodstuff is produced. This farm has a lot of buildings on it that can be converted into living quarters. We apply for licensing and soforth from the state and become our own residential facility, but we're a co-op. Families must be involved and live nearby. We are able to hire staff to help. We create a happy, self-sustaining placement for Ellie where she can continue to live after we've bought the farm, and this time I mean kicking the bucket, pushing up daisies, living-challenged, cashing in our chips, fallen off our perch, going to that great residential facility in the sky, dying.
Downside: Permits, training, finding staff, finding families who can participate in a co-op, convincing my husband this is a great idea. For alas, it is my dream and not yet his.
So, in conclusion of this belated World Autism Awareness Day Diary, dreams don't really die, they don't even really change, but you find that you change over time, that you adjust, as you must, to the life which unfolds in front of you.
The old dreams just fade away, and in order to stay sane and productive and as happy as we can, new dreams rise up in their place.
Happy Belated World Autism Awareness Day.