This was our first year participating in our local Autism Walk. Honestly, Jack was diagnosed last year a few months prior to the walk, but we simply weren’t at a place where we could face that situation yet. We were still processing it all, and the wounds from the blow of the diagnosis were still open and raw.
This year, we are in a much better place, so we decided that we needed to participate. I try to be very open with people about Jack’s various diagnoses, because I feel that Jack has a lot to teach us all about perseverance, compassion, and understanding.
We rallied the troops, raised more money than we projected, and got more people to commit to walk than we anticipated. It was in this spirit that a group of 15 people clad in matching Carolina Blue shirts all met at what is typically a concrete lot downtown early in the morning in late May to walk together for my little boy.
Now, I have had many friends tell me that the Autism Walk isn’t exactly “autism-friendly”, but we were determined that Jack would at least make an appearance at the Walk. After all, these people had raised money and committed their Sunday to him, so the least we could do was have Jack participate.
Normally, Jack’s sensory issues would have us running in the opposite direction from anything that contained the following offending items:
- Lots and lots of people
- Bouncy houses
- Screaming Children
- Much too Much of Everything
Instead, we loaded up the car with everything we could think to bring – his iPad, headphones, wagon, letters (his favorite fidget) – and headed straight into the fray. Jack is such a vestibular kid, so I knew that if I could just get him to the point where the Walk actually started – when we’d be moving – we would be golden.
We got to the Walk location – a big vacant lot that normally houses the circus when they come to town – and scoped out the ideal spot to set up camp. Towards the periphery, in the opposite direction of the stage, bouncy houses, and the general chaos, was an open area near what had been labeled as the “Quiet Area”. Perfect.
We tried to keep moving at first, keeping Jack in the wagon to save our backs, but eventually we needed to find a central location for everyone to meet up. It meant that the movement was over. I could tell Jack was stressed. I tried to put him down to let him run around a bit in spite of my constant fear over his impulsivity and tendencies to elope. However, I needn’t worry, because Jack’s feet were not going to touch the ground that morning. He was a hot mess, and he just wanted to bury his head in my shoulder and make it all go away.
So, between me and my husband, we spent the entire walk, including the 1 and 1/2 hours before and the 1.5 mile walk itself, carrying our 3-year old. Needless to say, I have now had about a month’s worth of an upper body workout.
One of the sensory activities that always helps Jack is rocking. So, in that waiting period before we got moving, I rocked him…and rocked him…and rocked him. I kept rocking him as if my life depended on it. My back was screaming for relief, but my boy needed me, and he needed to be there. This day – this event – was about him and kids just like him. He needed to be a part of this for the many people who were there for him.
I felt for him at that time. I tried to offer the old standbys – his iPad and his headphones – but he was too far gone. He wasn’t melting down. He was simply cowering in my arms and shaking. He was hiding from it all, hoping it would go away. I promised him that one day, when/if he could eat ice cream, I owed him an ice cream sundae. By this point, I think that my ice cream sundae debt to Jack probably runs in the thousands of dollars.
Finally, the Walk itself got underway. If I could make a suggestion to the Walk organizers, it would be to start everyone in start waves. I’m a runner, so there is hardly ever a race in which everyone all takes off at once. We start in waves. That way, there isn’t a traffic jam of people trying to fit through a start gate, which was what happened that morning.
Also, I am aware that they need some kind of PA system, but perhaps placing speakers all around the start area was a poor choice. Certainly, my baby boy wasn’t the only sensory kiddo at the Walk, and every time we passed within the vicinity of the speakers, he screamed. I tried to put his headphones on him, but as I said earlier, he was too far gone. He wanted no part of putting anything on his ears.
Once we got on the course, we settled into the rhythm of walking. Jack continued to bury his head into either my chest or that of his father, but he seemed more at ease. The crowds were dispersing to fill the streets, and felt as though we were past the hurdle. My poor baby could not relax, but at least there was less to offend his senses here.
Carrying a 3-year old, albeit a skinny 30-lb. one, can turn a 1.5 mile course into what feels like a 20 mile course. Now, my boy has low tone, so I had no illusions that he would walk the course at all, which was why we brought the wagon. However, I had hoped that he would be willing to ride in the wagon for part of the course. He needed to be squeezed and he needed the pressure of being held, so we did – as always – what we had to do.
I was exhausted as we approached the finish, but so proud that we were there that year – all of us. Of course, I didn’t take into account the cheering sorority sisters waiting for us at the finish line, which elicited more screams from Jack with each cheer. I made a mental note to make a small sign next year that says “Please Don’t Cheer!” to avoid that very scenario.
In the end, I couldn’t have been prouder. Sure, my boy was not doing well with the situation at all, but he was present. He was there, granted he was showing everyone the realities of living with autism and sensory processing issues, but he was there. Obviously, we won’t put Jack in situations like that unless we absolutely have to, but there are times when life and reality necessitate Jack’s presence, whether he can handle the situation or not. This was a situation in which he could not, but he needed to be there regardless. It was important for him to be there. As with many of these situations, we had to carry him, physically and metaphorically, through to the end.
That’s okay, though. I’ll be there to carry him as long as he needs me.