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November 5, 2008

It's a different world. . .

As parents of an autistic 12-year-old we go out of our way to make our world and our daughter's life as accommodating, predictable and secure as possible. We observe a strict schedule, give her plenty of notice of any impending changes and try to provide an autism safe-zone where she can relax. Usually that's our house, but it also includes her social skills classes, counselor's office and even the soccer field.

It has never been easy and it's getting harder, as she gets older and involved in more activities. With all the recent hullabaloo over the elections and the economy, our daughter started to panic that the sky is falling, we're going broke and we're going to lose our house. She sees everything in black and white and takes everything she hears literally.

For the last couple of years, we've been talking about finishing our basement so that our kids have a fun place to play and hang out. Recently we told our daughter that we can't afford the expense. It's not as if we need the extra space. Instead, we rearranged our main floor to make better use of the space we already have.

We also cut back on a number of unnecessary expenses, made the decision to put our son in public school, so that he can get the help he needs, without having to pay for private tutoring, had a big yard sale to raise the money to pay his private tuition for the remainder of this semester and told the kids that Christmas would be lean this year. We jokingly told our kids that Santa had to lay off half his elves due to the tough economy. Our daughter may be autistic, but she figured our the Santa thing a while ago.

We thought she understood why we were tightening our belts and battening down the hatches.

We we're wrong!

In our daughter's mind, not having the money to finish the basement meant not having any money. No money to pay our mortgage, no money for food and no money for soccer (which by the way is a major expense when you get into the teenage competition leagues).

Even worse, we completely missed the boat, when she kept saying "So we're going broke" and "kids at school are saying that the world will end, if so-and-so is elected." We brushed her off with the usual parental assumption that she's overreacting like all girls her age.

Needless to say, I felt terrible when her counselor had to point this issue out to us.

We should know better and we do, but in our defense, it's really hard to figure our what's in our daughter's head sometimes. We have to keep reminding ourselves that no matter how many times we explain something, she will keep asking the same questions.

In our daughter's world there is no such thing as a generic or all encompassing answer. She may understand our answer to one question, but she is often unable to apply that answer to a similar or even identical question in the future.

That means that we have to keep repeating ourselves and reassuring her every time she has a question or concern. We can't just say: "We talked about that, don't ask me again."

When our daughter stresses about something, she needs continual reassurance. She often repeats her questions several times: "Are you sure it's going to be all right?" and we have to keep telling her, yes, until she calms down or we can get her to refocus her thoughts.

Which brings me back to my main point. It's a different world out there from where our daughter comes from (i.e. our safe zone) and the older she gets, the harder it becomes for us to shield her from issues that she doesn't understand.

And, more importantly, we don't want to shield her too much. We're trying very hard to help her become more independent and mainstream with her peers.

It's easier to stay in our safe-zone. When our daughter is less stressed, so are we, but she has to learn to adapt to the world outside to the best of her abilities. We want her to function at her highest possible level and that means being more vigilant, more patient and more understanding.

And when our daughter says, "You're not listening to me," we have to go way beyond the count to 10 rule. We have stop what we're doing, help her explain what's wrong and help her find a way to resolve it, not matter how stressed we are at that particular moment.


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