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Sunday, June 5, 2011

It's your loss. Not ours.

Not once.

Not twice.
But three times in two days.

That's how many times someone said something hurtful about Lex without being aware of who Lex is.

The first incident pretty much killed any fun I might have had at my home church's Greek festival this weekend. Lex was absolutely loving the rides at the festival. My kid has no fear. He went on anything he was tall enough to ride and was upset at those he wasn't allowed to go on. On one of the rides, a simple merry go round of cars and motorcycles, Lex chose to ride a cool bike. The operator of the ride came over and told him "No standing up and no dragging your feet." I quickly tried to reiterate these facts to Lex, knowing he may not have been paying attention. The ride started and Lex was loving it. In his excitement, he stood up, still tethered on, only 3 inches off the seat. I saw this and immediately yelled at him to sit down. I then walked over to the operator to tell him that Lex is autistic and may not understand the instructions, in order to make the operator understand that Lex wasn't purposely disobeying his request. I understand that Lex didn't follow the rules, but what happened next blew my mind. The operator said with obvious disdain "That's no excuse."

The second incident happened this morning in Ikea, which for some reason is Lex's absolute favorite store. I think it's because of the bright colors and open floor plan that welcomes trying out all the furniture. We were walking around the marketplace, so instead of running around, Lex was in the cart. Lex saw an elevator and wanted to go up it. I explained to him that there was a yellow tape across it which meant it was broken. In his little boy "my mommy can fix everything" voice, he said "So fix it!" I tried explaining that I couldn't and he got upset and started to have a meltdown. While I was trying to calm him down and explain, there was a couple behind me who were talking to each other in Greek. From the phrases I was able to interpret, I made out some not so nice things they were saying about Lex and myself. There is only one way to interpret "bad child". And the tone that everything was said in was absolutely like you would expect when badmouthing someone, but thinking they have no idea what you are saying. When I had finally had enough, I turned around, looked them square in the eye and said "Signomi?!" which in Greek means "excuse me". They were completely flustered and stalked off in the opposite direction.

The last episode happened tonight at dinner. This is my last day with Lex for a few days, as I'm off on a business trip tomorrow to Montreal, so I took him out to eat. We went to our favorite local restaurant where the waitresses all know us by face and name. Lex and I sat down, we talked about what we were going to eat, and we were both in good spirits. After we ordered and got our drinks, he asked me for the "push button" which is what he calls my iPod. I eagerly gave it to him, as I know that can keep him quiet and happy. I have it loaded with educational games, some fun Sesame Street videos and of course, lots of Thomas the Tank Engine episodes. At the table across from us, I hear a woman sitting with her husband comment about how I gave my son "some game to shut him up so I wouldn't have to deal with him." She went on to talk about me and my apparently appalling parenting skills. She also commented on how I was trying to get the Yankees game on the tv (the waitress gave me the remote because she knew I wanted to watch). At this point, I swear, I just about had it. I was ready to stand up and just start yelling. But believe it or not, I used Twitter as my outlet and cooler heads prevailed. Our food came and Lex ate like a champ, which doesn't always happen.

But this time, revenge was sweet. Another waitress came over, one of the owner's daughters, and said to me "I can't believe how big he is! And what a good boy he has been tonight! Way to eat all your food, Lex!!" I turned and looked DIRECTLY at the ignorant woman and said "Yeah, for an autistic kid, he's pretty awesome." I swear, her jaw dropped to the floor at my brazenly directed comment to her. Not 5 minutes later, she asked for the check and they were out the door, with half their food still on their plates.

So why did I write this, other than obviously needing to get it off my chest?

It's all about awareness, people.

My brother had some bracelets made and gave me one last night. It's a simple white bracelet. On the outside it says "Autism Awareness" and "Hope". On the inside, it has my son's name. Just be aware. Think before you comment on someone else's child. You may not know the whole story. And chances are, that other person heard you. If I was a weaker person, this could have sent me into hysterics. But the sad part is, it happens all the time. But don't be fooled, I hurt. Sometimes worse than I may let on. But that's why I don't hide my son's diagnosis. I try to educate where I can.

And as I tweeted my final words on Twitter on the subject, I will copy them here:

"It comes down to this. My kid is awesome in his own way. If you don't get to experience that, it's your loss. Not ours."

(A special thank you to those of you who supported me through these incidents. Your support meant more than you may know.)

6 comments:

Pam said...

Hello from a fellow Yankees fan!

I found your blog via a post by someone that I follow on Twitter. I'm not directly affected by autism, but I have many friends who are. I think your post is brilliant and can be said for any child who might be acting out or having some kind of difficulty.

I posted a link to my Facebook page so that my friends could read it. I hope that's okay.

Well done! Take good care :)

Dad said...

Like Yiayia says: "Jerks"!

Jayme said...

probably an inappropriate term to use in this scenario, but autism is by far my "favorite" cause and charity.

I know many people affected with autism and I know it's not easy to deal with, but stories like these make me want to punch mean people in their face and hug people like you and Luke.

stories like these, the differences in some kids (and adults) from others that don't just stand out are so unique. please continue to embrace the uniqueness that is Luke and continue to blog about him and his experiences. I think this story is so touching and I'm very proud of you for writing it.

I hope people really do think twice before talking, myself included

Anonymous said...

Alison -- you were an amazing child (why we decided to have children ). A brilliant young adult and lovingly remember when you went off to your first Space Camp ! You continue to be an amazing,brilliant and most of all loving Mom. We love you and Lex so much !! " Auntie Pat " Ignorance is everywhere !

Anonymous said...

For someone who doesn't have children like myself, I try to not judge a parent since I am not in their shoes, but ever now and again I like to have a reminder of how challenging it is to raise a child normal or with special needs and to watch what I may say out of lack of patience. Thank you for a beautiful article and feel free to vent anytime. We all need a wake up call at times.

Kevin aka @cookerguy said...

Unbelievable stupidity. You handled it way better than I would've. Love that you could shut down the Greek couple. Normally I'd say hang tough, but you don't need that kind of encouragement. Job well done.