This was the one and only time I went camping in my adult life. TJ was 2 and Peter was not even a year old. We were with a whole group of friends on Burton Island. We had brought over all our camping, food, and baby supplies, and were at a beautiful little spot where we set up out tent next to a lean-to. Our friends were all spread out. At our location, there were only two people we knew and four or more friends of theirs.
We were hoping that this weekend getaway would help us forget that we were waiting on a diagnosis to tell us what was wrong with our boy.
The one night we spent on that island was awful. It was raining and both boys were crying hysterically all night. Peter only calmed down when placed between us. Then TJ joined us. The four of us huddled together and I don’t think Sean or I slept a wink.
Little TJ seemed out of sorts the entire time we were on that island. Then, the words “sensory integration disorder” and “autism spectrum disorder” meant nothing to us. We just knew something was not quite right with our sweet boy who couldn’t talk and got hysterically upset for seemingly no reason at all.
The next morning I exited our tent to find a hippie girl I didn’t know complaining about our parenting to my friend behind the lean-to. I remember the surprised looks on their faces as I turned away in tears, exhausted from no sleep and fed up with the lack of understanding for the incomprehensible position we were in. Immediately Sean and I sought friendlier faces — one of our best friends (and TJ’s Godmother) was in a different camping location with closer friends of ours and they knew what we were going through. They helped pack up all our belongings and we got back to the ferry on time to head back to the mainland.
I know my friend at our camping location felt terrible that we left, but we were beyond reach at that point. The thought of spending any more time with people who weren’t 100 percent on our side was unimaginable, and Sean and I were too hurt to continue with the weekend. We went home and cried — mostly out of fear of what lay ahead for us.
We knew what was coming.
That week, TJ, now 14, was diagnosed with autism.
I look back at that image of our little 2-year-old, contentedly throwing rocks into the lake, and I yearn for that simplicity, before we were labeled “autism family.” That time before 20 hours of therapy a week took over our 2-year-old’s life. Before Sean and I would fight like hell for our child to gain words when he had none. Before our 1-year-old would be an “autism sibling.” Before our entire family would fight for autism acceptance and understanding everywhere we went.
Today, I cringe when I hear the words “Burton Island.” I know that’s silly, and I should not associate that beautiful place with such a negative experience, but my stomach drops when I hear those words, and I haven’t been camping since.
It could also be the fact that I hate sleeping outside. And bugs. I hate bugs.
Let’s face it, I hate camping.
Maybe one of these days I’ll try it again. But don’t hold your breath.
Lauren Jordan blogs at I Don’t Have a Job.
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