Sticks and stones and invisible disabilites

There was a fundraiser in our town tonight for a school friend of Finny’s. Lots of people in the community were going and we didn’t want to miss it, but we didn’t know how Finn was going to handle it. It was at a restaurant with a bar and lots of people. We prepped him before the event and told him it was for his friend Charlie whose house burned down. He agreed to go and was excited that “there was going to be food there.”

Finn fell asleep on the car ride over.

We should’ve just turned around and gone home. We should’ve known it was a recipe for disaster.

As we walked up, we heard music coming from inside. Finn wouldn’t let go of my hand. We coaxed him through the door, but he wouldn’t cross the threshold once inside. I immediately offered his noise cancelling headphones, which he accepted. But he was already gone. I sat with him while Joe took the other three kids to put our stuff down and check out the Chinese auction.

Finn wearing his noise cancelling headphones. Obviously, this picture was not taken at the fundraiser.

Finn wearing his noise cancelling headphones. Obviously, this picture was not taken at the fundraiser.

I tried to do the “Finny wash” (a deep pressure massage all over his body while I sing to the disco tune “At the Finny wash, doot doot doot doot doot doot doot.”) But that only agitated him more.

Joe tagged in and I took Charlie, Henry and Tallulah to put our tickets in for some prizes.

It was getting more crowded and I knew if we had any chance of getting Finn in the door we needed to do it soon! So, Joe went to sit with Finn and Tallulah while Charlie, Henry and I went to get some food.

It was communal seating and Joe had moved tables twice just to find the “right” spot for Finn. He finally sat down at an older gentleman’s table with five available seats. I returned back with the food to find Finn nervously shifting in place  by Joe. He was beyond agitated. He was still wearing his headphones, but it wasn’t helping. Nothing was right for him. The seat wasn’t right. The food wasn’t right. “Mommy, stop eating 2 noodles at a time. That’s gross.” I offered him meatballs (his favorite), rolls, sausage. No. No. No.

He was complaining that his feet hurt. (They have been bothering him since he got his serial casts off. He has trouble standing for long periods of time.) I offered him my chair, but it was no good. I offered to take off his shoes, but that was no good either.

I was at a loss.

And then. The old man sitting across from us, who had apparently been watching our entire show, said to the other gentleman sitting next to him, “Well, this boy isn’t very happy tonight.”

He said it loud enough for me to hear.

I looked up and suddenly realized there were  five older people sitting across from us just staring at our debacle.

All the color drained from my face as I stood there jilted and stunned. Did he mean to say that so loud? Was he being malicious? I was immoble. Do I say something? We were at a benefit for another special needs child in our community. I thought we were in a safe place. Joe saw the look on my face (and probably the steam coming out of my ears) and said, “Shan, go get us some drinks. Go get us some drinks!”

I was seething, but I walked away. I mean Finn was wearing noise cancelling headphones for God’s sake. Isn’t that the universal sign for… I don’t know… something? I know that this man was older and  probably never heard of the word autism, but we didn’t deserve that. Couldn’t he see that we were trying? Couldn’t he see that we were floundering? If only he knew just how hard we worked to even get Finn in the door. If only he knew just how hard we work to do anything.

I have an autism awareness pin that says, “My child has autism and sometimes can’t control his behavior.” I bought it to wear on my bag at church, so that the dirty looks would stop. I’ve never had the courage to use it. Because I sometimes resent having to be a billboard for autism. I wish I didn’t feel the need to explain every “unacceptable” thing Finn does to every judgmental passerby.

That ends today.

I knew we had to leave the fundraiser from the moment we walked in. It wasn’t right for Finn and therefore, it wasn’t right for the rest of us, either. That was a long, excruciating hour for Finn and I regret putting him through that. I feel bad that the man saw and judged Finn when he was in such a bad place. He saw the messy, anxiety-ridden face of autism today and missed out on meeting my beautiful son.

His loss.


22 thoughts on “Sticks and stones and invisible disabilites

    • 🙂 I know. You’re right. It’s just so hard to let someone walk away and think what I know they are thinking about a kid they know NOTHING about. I know it doesn’t matter. I know I’ll never see that guy again. I just hate it. I’ll get over it. I’m working towards Zen. I think it’ll be a while.

    • Awe, I’m sorry, love. I hate those moments. Just the fact that you know that you are doing your best and working your hardest then that is all that matters. You shouldn’t have to wear a button. People will judge but all that matters is what is in your heart.

      I would have said something though, I have before, because sometimes it just feels good to stand up and say, “You are wrong and you should really know what you are even talking about before you speak”. 😉

  1. You are an amazing family and work so hard to do what you think is best for Finn, if others can’t see that then it is their loss. The world is, without a doubt, a better place because Finn is in it. If others can’t see it then maybe they should wear the noise canceling head phones and rosier colored glasses!

  2. Its not your job to explain yourself to everyone. Its none of their business and you don’t owe them anything. Easily said, I know, but I’m working on applying this to my life as well. Some days I wish I made my son wear one of those “I have AUTISM” t-shirts, but then I don’t want people treating him differently. So I have yet to purchase any, though I’m tempted sometimes!

    • Yes, indeed! I struggle with it, too. That’s why I want to change people’s perception of autism! I swear, the preconceived notion of autism is nothing like our kids! Sometimes I resent having to use the label to explain my kid. I wish people were just more understanding. And… we live to fight another day!

  3. You’re absolutely right, Shannon. His loss. And that’s all you need to know tonight. That, and the fact that you are an amazing mother to four—four!—beautiful, bright, amazing children. His loss indeed.

    • Thanks, Momma! YOU are an amazing mother! You manage to raise TWO amazing, adorable, unique kids while working, writing and creating ART (real art!) I don’t know how you keep your head on straight. I, obviously, am singularly focused, which makes me no fun at parties! I should’ve linked up to your post about Gilby’s fundraiser. We had similar meltdown experiences!

  4. This may sound ridiculous, but I wonder if you could hand someone a paper that explains, in your own words, how it is to raise a child with autism. Maybe if they read it, after you leave, it would make them regret their behavior. I don’t know, but there has to be a way for you to let people know that your beautiful son is dealing with something that truly is invisible. At least this would give you an ounce of satisfaction that you set them straight and maybe it would even make them think twice the next time they are in a similar situation. If I showed annoyance at a child who I thought was being difficult for no apparent reason, I would feel terrible if I read a note from the parents – especially if it was too late for me to apologize. Just a thought… ❤

    • No, it’s not ridiculous, Aunt Nanc. I’ve considered doing that. I would just have to write in in a way that evokes guilt rather than hostility (and that’s usually how I am feeling in the moment!) lol I’ve heard of parents getting business cards printed with info on them. It might not be a 1/2 bad way of getting my blog out there! :o)

  5. I remember once when my younger son was about 6 he was riding though a store in a shopping cart and I had an older gentleman say “He’s too old to be riding in that cart!” and I just looked him in the eye and said “He’s got autism and he is sitting quietly. It is none of your business.” I was livid. Even my dad (who should know better) once yelled at Alan for pushing him when all he was trying to do was move past him. Older people were raised in a different world. Hugs.

    • Yes, a different world, for sure. I love the “he’s too old for ___” comment. I actually got a “You have absolutely NO control over your children!” in the supermarket one time! I was stunned! As if “control” is the arbiter of a good parent!

  6. Definitely his loss, Shannon.

    It’s in those moments that you want to shout at people for their insensitivity, for their judgement. But remember that their negative attitude is about THEM, not about you and your child.

    • Thanks, Pam! I love you, too! I’m just wondering, though, does this mean I would get an A+ in the writing center? Because, really, the gold star is what I’m looking for. Validation from a respected writer. Does it get any better than that?

  7. I am new to reading your blog– but thank you so much for writing it:) I have a 4.5 year-old with PDD-NOS and I feel like you’re writing about a similar version of my life:) You really just do know, sometimes before you even walk in to a place/event, that it’s going to be a big fat failure. You know why I think we try to push through? We can remember (vividly) 1 out of 100 times when everything actually went okay and we don’t want to miss out on the chance to make that 2 out of 101 times:)

    • Yes! Exactly! And then when it does work, you’re like “Ok, what did we do right and how can we do that again?!” But if it doesn’t, we can’t find one single good thing that happened, which isn’t necessarily always the truth! 🙂 Thanks for reading and commenting!

  8. Shann…always know you CAN teach an old dog new tricks…from my own personal experience with an old “salty dog” like Frank, they just don’t know…they aren’t “in the know”. I get the invisible disabilities. It’s a HUGE issue for me. I have a very disabling dystrophy. I rarely go anywhere – especially if it requires the use of my much needed walker (it’s embarrassing when these 80 something’s down here stare and glare and try and race me to a checkout line). Know this: Just because you are my elder doesn’t meant you need to be rude too! Keep that in your pocket always. Respect those who reaped you. So to the old man at the table….if you don’t like brig around kids…then leave. Shann don’t be so flexible with people. You always show your children how strong you are. And baby you are from Gloucester. Make your comment classy…pull them aside and make them realize that YOU embrace differences in all humans…even that old mans. I Love You! Have a great day!

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