What's it like to raise a child with autism?
In the years following my son's diagnosis, I have often been asked that very question. For a while I was at a loss as to how to describe the life I had been forced, by chance, to lead. Then, one day, while talking with a friend about a trip I had taken to Montreal, Canada, as a teenager, it clicked. I was in a country where I didn't always speak the language.
When I found myself pregnant at nineteen, it came as a surprise. Careful, cautious and stick in the mud, were my middle names. Aside from abstinance and having my tubes tied, I had taken every precaution needed to prevent a pregnancy. Three forms of birth control and yet there I was, pregnant. I wasn't scared, just nervous and I knew I wouldn't be alone, because I was already engaged and I had a couple of terrific older friends to guide me along the way.
So, I spent my pregnancy preparing. I had first hand knowledge of infants from years of helping to care for my best friends children. I knew the basics and absorbed any and all information like a sponge. There was the prepared childbirth class, the books, the talks with friends, etc. My wedding was thrown in there about a month before my due date.
Then the day I had been preparing for finally came. The events that followed should have given me a clue that my son was not going to be your typical child. My water broke at 5 am on a Saturday morning. Lo and behold it was my actual due date. Everything was going according to plan and then the plan went awry. 83, yes, 83 hours of labor later, I was given a c-section. My son was born at 6pm on a Tuesday. He was blue and had the umbilical cord wrapped around his neck. He was rushed to the neonatal ICU and I began my 24 hour morphine binge. Thankfully, he recovered quickly and just two days after his birth, we were sent home.
Life went on from there. I was a young mother and wife and definately had my hands full, but our little family was happy and well. Our son hit every milestone ahead of time. We were back on course. The plan was again in place. Two and half years later our daughter was born and while she wasn't part of the plan, there never had been a happier accident in my life.
Along the way, we had noticed some odd behavior with our son. He loved hot wheels, but unlike a typical child, our son didn't actually play with the cars. No, he loved to line them up seperated by make, model and color. Loud noises would have him screaming for hours. We couldn't even go through the drive thru because the speaker would set him off. He never had friends that he played with, he was just content to be on the sidelines and watch. While he was a talker, he couldn't hold a conversation and forget about eye contact, because he just couldn't do it. When I voiced my concerns to his pediatrician, I got the brush off. There was nothing wrong with him, he just had a few eccentric behaviors and as far as his social interactions, well, we aren't all social butterflies.
Finally, at the age of seven, others, namely his teacher, began to notice some of the things that had worried me in earlier years. He was evaluated, given a battery of tests and then came the day when the results were in. The psychologist informed us he had autism. AUTISM?! WHAT?!
I, like many, had an old fashioned view of autism. My child spoke, he smiled, he interacted with others to a certain degree. Everyone knows that a person with autism sits be themselves, quiet, rocking back and forth. Right? No, they don't, not all of them.
So, back to the original question. What's it like to raise a child with autism?
Imagine, if you will, preparing to go on a trip. It's a place you've been before. You know what clothes to pack, you know the sights you're going to see, you know everything you're going to do when you get there. You'll visit old friends, take in a show or two and have a grand old time. Just as you've done a dozen times before. You head to the airport, hop on the plane, destination New York City. You love it there. It's a place you're comfortable in and you can't wait for the arrival. Along the way you take a nap and you wake up and you're in .........
Mogadishu. MOGADISHU?! How in God's name did you wind up here? You've never been to Somalia before. You don't speak the language, there's nobody you know there with you except your spouse. You're alone and terrified and all is not going according to plan. So, you fumble about for a while. Attempt to learn the language and the customs and just when you think you're begining to get a feel for the place, it's time to go. Where to, you don't have a clue. You board the plane and wonder where you're headed to this time around.
Ladies and gentlemen we've arrived at our final destination. You look around and discover Ireland is kind of a nice place. Maybe not as wild as NYC, but a nice place none the less. There's mountains to climb, castles to investigate and rivers to navigate. Along the way you meet a few who have also been transplanted. Your days are filled with laughter and some tears. You learn to adjust and even though you're happy, there are times you find yourself filled with sadness.
One day while in the local pub, you spot an old friend on vacation. It's their final day in Ireland and tomorrow they head back to the states, namely, NYC. You remember NYC, that's where you were supposed to go all those years ago. It was all part of the plan. You feel a tad wistful because, over the years, you came to the realization that it was a place you will never return to. However, it's a fact that you finally came to terms with.
There will always be a knot in your throat when you think about what could have been. But what could have been, isn't always what should have been. The could have been was NYC, your reality resides in Ireland. It's a place of wonder and mystery and in the end you wouldn't be anywhere else than right where you are.
|
