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Just the Truth: When Life's Journey is Unexpected

Posted Jan 06 2013 8:49pm
There is an article bouncing around social interwebs which claims to take a bald-faced look at the "truth" of having a child with autism. That "truth," according to the article, is that having a child with autism destroys your life.

It is the most horrible article I have ever read in my life.

For one, it is not the truth. It is the opinion of a person watching a family with an autistic child (not even their own child), noting how the parents had to give up their careers and have no one to help them but a set of retired parents- who are now at odds with each other, because Grandpa resents having to spend his retirement money on his grandchild. I will spare you both the details and the article. It is a waste of valuable time and will just skyrocket your blood pressure.

No, raising a child with special needs is not easy. It is very different from raising a child without special needs, because most people understand and know what to expect in raising a child without special needs. We spend a lot more time in "therapies", rather than "extra-curriculars." We know fancy words such as "propioceptive input" and "pathologic encephaly." We understand plenty of weird acronyms, such as "IEP" and "BIP" and "FAPE".

I still watch the kids at the park and think "wow, that kid needs some OT."

My life is not what I had thought about and planned for. It is, in fact, very, very different. No, I do not have a full-time job, but a string of part-time gigs and contract work. My husband and I go out by ourselves about twice a year, though we have finally found someone we could use for babysitting (an aide with our OT office does babysitting on the side, and is awesome with our guys). Up until now, it was Grandma or else we stay home. Sometimes, that is how life goes. Not as planned.

Does that mean my life is "destroyed"?

My life is different. I don't know many people now without special needs kids, so I am not quite sure how different. For us, this is normal. To go on a trip, you don't just get in the car and go. You have back-up plans in case the trip doesn't work. You pack familiar items, even for a day trip. We are in love with Steve Jobs and Apple for making our lives so much easier. Did you know there are some really awesome apps to help kids with pincer grips and eye-hand coordination and... wait, am I off topic?

Do I sometimes feel sad about not having a full-time gig in a nice little college somewhere and running off to India with my family every couple of years? Well, yes. It was a nice dream. But that's not how life worked. And I will get him to India. It just needs a lot more planning, and won't be happening very soon. However, I did manage to get my passport updated last year. Just in case.

Yes, my life is different, and it changed our plans and dreams and ideas of the future. But we will never say we no longer have one. We have a life, and it is an awesome adventure of a life. We will work through the challenges- just like everybody else. It has ups and downs; even if the downs dip a little lower, the ups rise a little higher. Or perhaps, they just dip and fly at different moments, for different reasons. Life is more unexpected in many ways.

But you know what? Different is not demolished. Unexpected is not always bad. And like Bilbo Baggins, I'll never be the same... but I'll have plenty of good stories to tell.
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