Saturday, May 3, 2014

Should the world adjust to Cullen or us to the world?: Dealing with Meanies

   Today at the park something happen that happens a lot to us and I am never sure of how to deal with. We were playing when another family arrived not anyone we had seen before or who knew us. My two older boys started playing with the two new boys who had just arrived and Cullen continued to play by himself. Eventually Cullen got curious and made his way over to the new comers. To the outside viewer he would seem like any other shy child unable to make the first move for play. He played beside them quietly on the and tried to climb the ladder like the older boys, that's is when the new mom offered her assistance to him. Their exchange reminded me of Briar rabbit and the tarbaby.
Mom: Would you like help?
Mom: I could lift you up there
Cullen: .....
Mom:So you want to slide too?
    A note of frustration was starting to enter her voice, as he was trying to help him why would he not answer her.  I was making my way over to help but what do I say to he other mom? "Oh don't bother he does not talk?" "Oh sorry he is autistic and is unlikely to answer you?"
    This is a common conundrum I have, how do you explain to others why he is acting the way he is? The lady at the park was not being mean but she was clearly frustated that he was not acting they way she thought he should be. If he were an only child it is sad to say but I probably would not rake him to the sort of places and events that trigger this. I find them uncomfortable he finds them unbearable we could stay at home and play. But I have two other boys at home who greatly enjoy this sort of social events.
   Two of the hardest experiences in my book were the Twilight festival carriage ride and The complimentary breakfast fiasco.
   Here is a little background to the Twiligh festival (no it is not a festval for sparkly vampires but given that I live in Transyvania county it would not suprise me).I live in a small town that hosts four anual festivals on the towns main street. The White Squirrel festival in May, the fourth of July festival, the Halloween festival, and The Twilight Tour.
     My favorite being the Christmas Twilight festival, it is held at night and there is a bunch of Christmas themed activities. Carolers, Santa Claus, ice skating, (to hot in the south for ice so it is really a snap together roller skate rink) it is like something out of a movie it is wonderful. By far the biggest draw are the horse drawn carriage rides, to the lovely and historic Silvermont mansion .With the street lit by paper luminaries you feel like you are living in a Christmas card. The boys were so excited to ride in the carriage , but the lines were ridiculously long. Like a almost hour wait for a four minute carriage ride. I suggested we just go on home but was met with tears from the older boys they had their little hearts set on riding in a one horse open sleigh. So I relented and agreed to wait . Luckily we had spotted the event quickly and were near the beginning of an extremely long and cruvy line. The people in front of us were together and from out of town they were talking about the long drive from where the lived just to attend the festival. They were the sort of upper class yuppie moms you see power walking together Starbucks cups in hand. As we reached the front of the line there was a table laden with mini candy canes. I do not know if I have mentioned this before but Cullen turns into the Tasmanian devil around candy. He started grabbing handfuls and squealing gleefully the prim lady manning the table informed me tartly that there was only one candy cane per child. I wrestled the candy out of his hands and picked him up to prevent him from getting more. That is when he started laughing and squealing loudly. The moms in front of us and between them six of the most well behaved little girls I ever seen. They stood stock still as they waited patiently for there turn. Cullen had now begun to climb me like a tower and then dangle over my shoulder when he reached the top and kick. The thing was he was not being bad, he was happy, happy to be out at night, happy, to have seen Santa, happy to be we with his brothers waiting for the horse. So to the outsider it may seem like he was being unruly and I should take him home I did not because he was having a good time. If he could talk he would have been saying "Mommy when is the horsey coming back" " Mommy can I have another candy cane?" But instead he was squealing happily. As it neared the thirty minute mark of waiting behind the yuppie mommies they were starting to get annoyed. The one mom rubbed her eyes impatiently "I am so glad we drove  Tennessee so I could get a migraine." and then she threw a look at me that clearly said me and my child were the reason for her headache. I was mortified I felt my cheeks flaming but what could I do? What could I say to explain the situation I wanted to make her feel bad as she made me feel.
    The other instance of discrimination is the great hotel breakfast debacle. I live about three hours away from my best friends and biggest supporter s my mom and sister. Sometimes they come visit me and stay in the Hampton hotel in town. In the morning I go visit them at the hotel and we have breakfast there. It is a favorite time for all of us and the boys look forward to it so much. The last time they stayed and we met them there was the last time they ever stayed at that hotel again. We had eaten our breakfast and my sister went to get ready my mom had to use the restroom and I stayed at our table with the boys and their cousins.
      We were all having a great time they all get along so well they were laughing and talking. Cullen again was squealing I imagine that he was trying to say "I like eating breakfast here!" "I am so happy my cousins are here" " What else are we going to do today?" Again he was not being bad if his was causing a scene or throwing a tantrum I would have taken him outside. He was just laughing and having a fun time with his cousins. One of the breakfast attendants came over to our table. " I am sorry but he is being to loud you he is disturbing the other guests." I was stunned "He is autistic, he does not talk this is his way being happy." "I am sorry but maybe you could take him outside?" Again embarrassed I trucked all five kids outside in the freezing as sleet so we would not be a bother.
     So my question is how do I explain my beautiful little boy to the outside world? Should I have to? I do not know what people expect from a special needs child. That they should have to look different to be treated with respect?


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