We had an appointment at the Social Security office before Wesley's normal scheduled therapy today. We got there and it was busy. It always is. Really, every single time I've been in there it's been packed. Wesley had his iPad going and the security guard told me that the volume wasn't allowed on, I said okay. I turned it down. That's hard for Wesley to do as he is hard of hearing and at least wants to hear a little bit. I had to take his iPad away from him because he doesn't understand to keep the volume down.
After I took his iPad Wesley started getting restless, as you know, children do when they are bored. He started laying on the floor, flopping around, switching seats, being loud, playing with the handicap door open button. As I redirected Wesley away from the door for the third time; he started to cry. So I picked him up and brought him back to where we were sitting. He was starting to settle down when the same security guard that mentioned the iPad said "We can't have that in here, you will need to leave." I started to cry and explain that he didn't mean it, he couldn't help it and that our number was next in line but before I was finished he cut me off and said "that's enough.".
Fine. I understand that crying children are disruptive. I get that. It's also kind of inconvenient, but we had already been in there for 35 minutes and for that amount of time Wesley's behavior was pretty good. I grabbed my diaper bag, Ava's carrier, and Wesley's hand and we were walking out the door.
This same security guard began to FOLLOW ME TO MY CAR explaining "there are people in there that can be set off by crying children and that I should be more considerate of others". We are all the way to my car by now, Wesley is crying because he thinks he is in trouble. This man is shouting as he is still trying to explain his a**holishness, as if somehow I should tell him what he is doing is okay. After Wesley was in his car seat, I walked around to the other side to put Ava in when I stopped.
I stopped and looked at him then I just lost it and yelled at him, "Are you kidding me right now? Do you think I would be here if I didn't have to be? Do you think that we came here for fun? No. Do you think this is making him [my son] feel any better? Is this making anything better? You are mistaken and you are wrong. My son can't help this behavior because of his disease. And just like those people that 'might be set off by a crying child' those people are setting him off. Are you going to ask them all to leave? He is a little kid.".
In that moment, he noticed my disabled license plate and he knew he was wrong. He turned around and went inside. I put sister in the car and got in and cried.
How dare he. How dare he kick us out because Wesley was crying for 2 minutes. Normally, I receive the looks, yes the dirty looks, but no one seemed particularly bothered by him today. I cried because I was in shock and angry. He wouldn't even let me explain. He obviously has no compassion for adults or special needs children.
My sweet boy looks "normal" and therefore people judge him when he is having a hard time behaviorally. I'm still upset about it, partly. I have never been treated so poorly in a place of business. I never thought I would have to defend Wesley's rights in such a harsh way and as my MPS family (support group) told me, it probably won't be the last time. I've accepted that. I've fought a long time for Wesley. I've fought doctors for diagnosis, therapy, further testing, more diagnosis. And I'll fight for his rights. They are the same as anyone else's and no one will convince me otherwise.
Have a Warriors Heart friends. I'm glad this day is over,
Wesley's Mom
P.S. The security guard then came back out and got us in next...
