Last week, I was invited to give a presentation at our local library about our book, the local support group that I helped and just autism in general. I tried for days to write a presentation – one that said everything I wanted to say. I finally gave up. I made a few notes and just started talking.
Some days, autism is just hard. For us, now, it’s either gotten easier or I’m just so used to it that most days just don’t seem rough. Unless I’m tired – then all bets are off. Most of the time, I think I’ve just gotten so used to the noise, the routine and the sensory issues that I don’t think about life any other way. It’s just us. I love our adventures.
I shared how Casey was diagnosed in 1992 and no one knew anything about autism except what they saw in the movie Rainman. (And no, neither of them have counted spilled toothpicks!) We learned and we adapted. Not always smoothly and not often without a lot of tears, but we made it. I shared that Rob was diagnosed much later than Casey for a wide variety of reasons. When he didn’t talk much, we had Casey’s neurologist examine him, but he agreed he didn’t see autism, yet.
I remembered how I learned to never say anything I don’t mean. The first time I remember Casey taking my words literally, she wanted something and Rob was crying for his bottle and Mandy needed help. I told Casey to hold her pants on. When I turned around a few minutes later, she had her fingers through her belt loops waiting. She was also looking at me like I was crazy. (A look I’ve seen often over the years!)
I remembered the day we were putting a new roof on the house and all I needed to do was keep an eye on Rob. He was playing on the porch, I dashed in the house to stir the soup in the crock pots and he was gone when I came back out. I ran around the back of the house to see his legs hanging over the edge of the roof. Not thinking, I yelled, “Get DOWN!” And he did.
He launched off of the roof, landed in a pile of shingles and rusty nails, did a perfect somersault and took off across the yard without a mark on him. We spent the rest of the day in the house.
During all of this, people had often told me I needed to write a book – someday. Not long after Rob jumped off the roof came the day that gave me the title to our blog and book.
I heard noises coming from the newly painted dining room that I didn’t recognize. When I went to check, I found red Kool-Aid running down my white walls. Off the ceiling fan. Dripping from curtains and tables and pictures on the wall. And then I saw the plastic cups of Kool-Aid lined up on the table and Rob with an apple in his hand.
I yelled, “Don’t throw that….” but I was too late. The apple hit a cup and Kool-Aid flew everywhere. Thankfully, I was quick enough to stop the next apple. Rob smiled, gave me a hug and ran off to play while I watched sticky juice drip. I was beyond furious as I cleaned up the mess. I was mumbling words that would scare a sailor. Finally, I was done – and flipped on the ceiling fan to cool off.
Only to realize I hadn’t cleaned it, yet, and Kool-Aid flew all over the room again. I’ll let you imagine how I reacted to that. But, I was done. I was full of rage and I hated autism. How was I supposed to deal with stuff like that for the rest of my life? Not happening. Nope. Forget it.
Later, after a shower, a nap and an ice cold coke, I could think rationally about it. I realized that I had the title of my future book (It only took 20 years to finally write it!) and our blog. That day truly was a perfect example of our life – never knowing what was going to happen.
Today, the unexpected still happens. Casey still has days where she is upset, but they are few and far between and she’s able to calm down. Rob’s anxiety is mostly under control and they both sleep most nights. (Thank you, God!) We still have sensory and communication issues and always will, but we try new things and stick with what works.
We are able to go anywhere we want now – sometimes with a lot of prep work. Sometimes, we just go and see what happens. It’s been almost 33 years since autism came into our lives (officially – now, I can see it in Casey as a baby) and we’ve learned a lot. We’ve had terrible days and amazing days. We have made so many wonderful friends who we now consider family.
When I look back, I see our rough days, but I see the happier times even better. I have so much to be thankful for and am so proud of Casey, Mandy and Rob. We beat so many odds! We have a huge “village” on this autism adventure with us – I can’t wait to see what life brings next.
If you want to read more about our autism adventures, check out our book, Autism, Apples and Kool-Aid, available here. Our new book, I Wuved Her First, is dedicated to siblings and will be available in July. Mandy and I can’t wait to share it with you!
