Highs and Lows

Let’s talk about highs and lows, ups and downs, ebbs and flows.  Some days are hard… we all have hard days.  Then there are the days you feel like “oh yeah, I’ve got this!” and think you can do anything.  When that feeling is there, it is so great, but when you’re snapped back down to earth without warning it can, quite frankly, suck.  That happened to us recently. 

We were riding high.  We went to the county fair and Channing road all of the rides, even a few of them all by himself (thank goodness for seat belts).  He waited patiently for the rides to start (this was huge for us!), wore a wristband, and didn’t run off once.  Yes, he ended up being sick for 5 days after the fair (not sure what kind of virus he picked up, when he did, or if it had an effect on his behavior that day) and we purposely went at a time when the lines and wait would be minimal.  However, when we left the fair, I was on top of the world.  I felt like we could do anything.  I felt so “normal” for once in so long that I had forgotten how that even felt.  I wasn’t anxious or frustrated.  I left with happy memories I couldn’t wait to share with the world.

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The following weekend we went to a birthday party.  I had been avoiding parties for over a year because it was just hard.  Every time we went I would ask myself “why do you do this to yourself and to Channing??” It always felt like we were either holding him, chasing him, or we’d just be off playing by ourselves.  I would barely be able to speak to anyone and Channing certainly wasn’t into socializing, so why even go?? It made things so much worse watching the other kids do the things I could only dream of my child doing.  It wasn’t healthy, so I just wasn’t going to go. 

But, I was coming off the “high” of the fair.  We are “public” with our story and all of our friends will be there.  After all, the birthday boy is my Godson and I knew our friends would understand if we had to leave. We went, and while Channing didn’t necessarily interact completely or do the activities, he was present, and he had a great time.  He jumped on the trampoline, ran around the backyard, ate pizza, and collected lots of rocks.  He had no meltdowns and I was even able to capture a few photos.  He wasn’t interested in bobbing for donuts and had no desire to get off the trampoline long enough to hit the piñata, but he was THERE.  We stayed longer than we ever imagined possible and went home with a happy and tired little boy. 

I was riding high.  I thought, “We have made a turn! We are going to be able to go and do so much more now!”  Then we went to Peppa Pig Live. Quickly, I was reminded that we still have a ways to go.  It is my own fault.  I was overly confident and thought the more I do with him, the easier it will all become.  I tried to be prepared, but autism is not something you can prepare for. 

We knew from past experience that he would not want to sit in a row or near the stage, so we bought box seats.  We bought the entire box of 6 seats so that he would not interfere with anyone else’s Peppa experience.  We walked into the theater and immediately he wanted down and to RUN.  I chased him into the crowd and he sat down right in the middle of all the people.  There was a lot of staring, but I sat down next to him.  Then he wanted me to lie down.  I told him I couldn’t lie down in the middle of a group of people, and this made him very frustrated.  So, he ran.  He tried to run back outside towards the busiest street in Charlotte.  I grabbed him and carried him back in surfboard style.  We went straight to our box to try and get him settled for the show.  As soon as we walked into the box, he was terrified and wanted to leave.  Nothing ever noticeably frightens him, but I could tell he was scared.  It broke my heart that something I thought he would enjoy was scaring him.  He didn’t understand that Peppa was coming on stage, and when the show started he wouldn’t even look at the stage.  He just wanted out… so out we went.    

Three minutes into the show and we were walking back to the car headed home.  I was sweating.  He was sweating.  We were both exhausted and my mom was feeling helpless.  At first I was so defeated, reminded that we still have such a ways to go.  My mom said, “We will try again next year” and I laughed a big “heck no” laugh.  But you know what, we will, we will just try again another time.  He wasn’t ready this time… but one day maybe he will be.  Even though a bad day happens, the next day could always be a great one (or vice-versa). 

We’ve had a few bad days since then, and several good days.  It’s certainly not all rainbows and it’s never all rain clouds.  But we are still here.  We are still learning and growing with Channing leading the way. 

I wanted to share my first journal entry the day we learned Channing had autism.  I still reflect back on these words I wrote because they will always remain true.  Sometimes I feel completely defeated and then I remember… “God had this plan all along.” I am also reminded how far we have come since this day. A year ago, we would have never been able to do even 1 of these 3 things!