I lived in Chicago for many years. I’m a country girl, born and bred, and the yearnings for the green open spaces of my childhood, ultimately became too strong for me to stay. But, while I was there, there were many, many things about the city that I loved.
Public transportation was never one of those things. It was too loud, too smelly, and nearly impossible to maintain the personal space buffer I like to keep from people I don’t know. I hated taking it and did anything I could to avoid it. On occasion, I even walked the 13 miles from my apartment to downtown events if I had the time and I knew the trains would be overflowing.
These are all sensory reasons for avoiding public transit and admittedly they are stronger responses of sensory avoidance than most people I knew, but it’s still very different from the sensory processing troubles Charlie has.
I was perfectly able to take the train downtown if I wanted and it would have left me no more depleted for the day having done so. In fact, it would have probably left me with much more energy and many fewer blisters than walking 13 miles. I may not like it, I may be glad when it’s over, I may convince myself to splurge on a cab to get back home, but I am perfectly able to take public transit and continue on with my day as usual. It will have cost me no spoons, if you are a fan of spoon theory.
This is not the case for Charlie. These sensory experiences come at him like an assault. Ironically, one of his favorite things to do when we visit Chicago is to ride the elevated trains downtown. We will find the forward facing window in the lead car. Charlie will don his noise blocking headphones, sometimes plug his nose, and I will stand as a shield between him and the rest of the riders to minimize any unexpected touching as the train veers around corners. We will circle the loop and continue rumbling on up the north shore. Then we will get off, cross the platform, and do it all over again in the opposite direction.
My boys love this. Charlie loves it so much he endures it. The noise, the smells, the crowds, he endures them all even though I now know how painful it must be for him. Literally.
When we are done we have a now favorite restaurant, a dark place with high backed booths, we will order some food and Charlie will go to sleep. He will shut down for a while and try to replenish himself, as best he can, from all it took for him to do this thing he so wanted to do. When he wakes up he may be able to do another activity and he may not. We may have to return to the hotel and swim in the pool for him to sooth his body enough to carry on.
These are hard things for people to wrap their minds around. If you don’t live it, I can imagine how easy it must be to think I should just force him to soldier on.
I’ll be passing through Chicago again in a few weeks, alone with the boys for the first time, on my way to visit family. I initially planned to avoid going into the city altogether but the boys pleaded to go. They want to ride the trains, Tommy wants cinnamon rolls from a favorite breakfast spot, Charlie wants to ride the Tall Ships at Navy Pier and I’m a sucker for those sweet little faces.
So, I agreed and then immediately I felt the sheer panic of what I agreed to do and called some Chicago friends for reinforcements. I asked them to meet us at the hotel later, maybe in the pool, so I could have some time to talk with them and reclaim my own sanity during a time when I wouldn’t need to be focused so thoroughly on Charlie. I didn’t want the distraction out in the city of trying to catch up with friends I don’t see nearly enough and miss the warning signs of Charlie needing a break.
But, you know what comes next, I’m sure.
The questioning.
Why can’t we just do X activity instead?
Why can’t you just tell Charlie he has to do what you want for one day so you can see your friends?
Maybe if you didn’t coddle him so much he would learn to adapt better?
Sigh.
Over the years I’ve learned to stand my ground on these things.
I’ve accepted it’s hard to get if you haven’t walked in my shoes.
I’ve learned to keep educating.
I’ve learned some people will get it eventually.
And some people just never will.
I get it. And you said it so well you brought tears to my eyes. Keep being strong.
thank u.
This description is so full of imagery and emotion! It is a beautifully written explanation of what challenges our children face. You are a determined and prepared, loving mother. I think it will be fine – and even if it isn’t, I can’t imagine how you could’ve been any more prepared or vigilant of everyone’s feelings, including your own. It is important to consider ourselves in the equation because we must take care of ourselves to care for our kids. Hope you have a great time!
thank u, Karen.
I too enjoy when others offer a simple fix for autism related issues. And it can be hard to explain why certain things don’t work. Chicago sounds nice and I’d love to visit there one day, but for now, we just enjoy being in Hamilton.
u should, it’s a lovely city…..
I guess it’s about knowing your child & the situation. My son does like to control things in that he will do what he wants to but then won’t want to the things that others choose. We are trying to work with him to understand that sometimes we do have to do things for others’ benefit. It is a fine line to tread when making decisions about when we do expect him to do the things he doesn’t want to do and when we accept that we must plan around his needs. Like everything we are just all trying to feel our way to doing what’s best for our families. And what would be nice is that others including family and friends would try to understand this.
yes, we also have that problem, sometimes, but that’s another post entirely, I suppose
I think that it is wonderful that Charlie wants to experience Chicago, even if it does become overwhelming at times. I sorry that you get the questioning, I think that this is common all over the world and it is part and parcel of having an autistic child. All we can do is educate and educate again….. I have been following you for a while although have never commented before!!
yes, educate, educate, educate. part of the package
thanks for checking in, it’s always nice to know whose out there 
LOVE this post!!!
aww…thanks.
My son has been diagnosed for coming up on 2 years and I still struggle with thinking ahead on what could happen to better prepare him and the rest of us invovled. Reading how other mothers do this has opened my eyes to do this more effectively. So, thank you once again for the posts. I always enjoy them. Did you go on the trip, how did it go?
Thank you. I didn’t quiet understand what was going on when my daughter (8) would get tired or zone out during/after an adventure as weblike to call it. She would be so excited to go to the zoo, ride the pirate ship, aquarium… But mid way thru the adventure she becomes completely physically exhausted. I knew this some how had to do with the stimulation. Until I read your post I didn’t exactly have the words or understanding to explain it. Thank you
I’m so glad you found something that made sense to you. I often write this things because I need to remind myself of the things I know about him.
As someone who was once Charlie’s age and who’s mother took that time to work around my own sensory issues, thank you.
That really means a lot to me to hear! Thank u for commenting!
You are a great mom. Not just for understanding and helping with Charlie’s sensory issues, but for realizing that despite these issues, he still loves to ride the trains, and allowing him to do so. Autism is a strange world where we often have to balance sensory issues with other things, like how fireworks are loud, but so nice to look at. I know for myself, as an adult Aspie, I deal with these choice issues everyday.
thank you, I really appreciate you saying that.
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