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Tuesday, February 5, 2013

The gradual changes---negative and positive

I read a short story at some point about the end of the world.  It happened on a Thursday, with a flash of blue light and a strange sound, but people went on with their lives for a while.  Things gradually got weirder and weirder, and about a week later, everyone realized the world was over and faded away.  The reasoning was that the end of the world was just too big a change for people to take in all at once, and so the mind absorbs it slowly, over a bit of time.  Now, having a child diagnosed with autism is IN NO WAY the end of the world.  But that story always struck me---how our mind can't take in all of a big event at once, can't pick  up on all the changes it brings.  I was thinking about how we realize how autism has changed our lives gradually, over days and weeks and even more, over years.

First, the negative.  You might not want to read this if you have a child just diagnosed.  You need the gradual time to process these changes, to have them not come as a blinding shock.  But if you've had a few years to live the autism life, you probably know them.  Your life is vastly changed by your autistic child, every single part of your life.  There are the little things you can't do any more, or can't do with ease---sleep all night, go on trips, eat out, have casual get-togethers with other families, eat a meal as a family calmly, have your dream Christmas, keep up with hobbies, go out with friends...pretty much every little pleasure you used to have is changed drastically.  And there are the big, big things you can't do.  You can't count on a future without a child to care for.  You can't assume your child will go to college, or finish high school, or learn to read.  You can't assume your child won't run out the door, into the street.  You can't count on them keeping themselves safe.  You can't relax.  You can never, ever again totally relax.  You can never, ever again be a normal, regular, mainstream family.  You are changed, for life.

You might read this and think---there are positives?  But there are.  They might be more subtle than the negatives, but they are there.  They take longer to see, sometimes.  But as time goes by, you will find them. You learn the true meaning of not sweating the small stuff, and to be cliched---that almost everything is small stuff.  You find yourself chuckling over the things other people worry about, the things you used to worry about.  Your child is having trouble mastering long division, or isn't scoring at the top of their class in reading?  And you are upset over that?  But your child can talk, has friends, will live on their own some day?  So what's the problem?  That's a freeing feeling, especially if you have other children.  Both my boys have said to me that they realize how little we pressure them compared to other parents.  To us, they are miraculous.  We don't sweat the Cs.  Next, you realize how many truly good people there are out there.  There are people devoted to your child in a way that goes far beyond any job or paycheck.  I have met more wonderful teachers, therapists, paraprofessionals, principals, and also more fellow parents of special needs children that are amazing people than I ever would have known or guessed without Janey.  Having a challenging child introduces you to people up to the challenge.

The last positive is a change that has occurred in my heart.  It's hard to write about, because it involves admitting I didn't used to feel the way I do now.  I remember when I was first pregnant.  Tony and I talked about what we would do if we had a child with Down Syndrome or other issue that caused intellectual disability.  We agreed we would most likely put the child up for adoption.  We thought, we truly thought, that we could not handle a child with that kind of disability.  I felt, in my heart, that children like that were a tragedy.  It makes me cry, to think now how I felt.  Now I see the children at Janey's school with Down Syndrome, the other children with autism, the children with various other challenges, and I can see them as the amazing people they are---people with as much value and personality and importance as any other child. I still wish Janey wasn't autistic.  It's not an easy life, for her or for us.  But as for her being a valuable, lovable person, a person worthy of respect...I am there.  It took a while, but my heart was changed.  I don't measure people by yardsticks like academic tests, or income, or accomplishments any more. That change took a while to come, but I am grateful forever to Janey for bringing it about.

2 comments:

1 out of 88 said...

"There are people devoted to your child in a way that goes far beyond any job or paycheck. I have met more wonderful teachers, therapists, paraprofessionals, principals, and also more fellow parents of special needs children that are amazing people than I ever would have known or guessed without Janey. Having a challenging child introduces you to people up to the challenge."

This was what I needed to hear. I have been so critical (and I hate to be so critical) of anyone working with our daughter. Maybe we just haven't found the right fit yet. One of her therapists is really good, but as for the others, we just haven't found it. We had a terrible experience with the DP who diagnosed her. We are going to a new one tomorrow for a follow up and I am hopeful that this will be a good fit. Thank you for reminding me there are those people out there.

Suzanne said...

We have been very, very lucky with Janey and the people that work with her. But I know not everyone is as lucky, and it shouldn't be that way! A lot of it is just lucking into the right school, through a series of lucky breaks that would rival winning the lottery. If we lived ever in the town right next to us, which is most ways is a much more "desirable" place to live, it would be a very different story, I think. I hope you find the right people for your daughter. In the world I'd dream of, there would be only right people, but that's not the real world. I wish it was, so much.