Just Being There

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We recently celebrated Johnny’s Daddy’s birthday and the family were gathering for his birthday dinner at an authentic Italian pizzeria with a wood burning oven. It is a new place that we haven’t been to before so lots of distractions and new things to intrigue and fascinate Johnny. Chandeliers made out of stainless steel pot hanging racks lamps strung inside of them. A wall of floor to ceiling windows and a bench seat by that window for Johnny to look out of an gaze at the scenery or the street cars slipping by. It’s getting nosier and nosier as more family pile in. The acoustics of the restaurant with the high vaulted rustic industrial ceilings don’t lend itself to conversation. Trays of hot pizza keep being carried by and tantalizing the senses and all Johnny wants is more yummy Italian bread, olive oil and balsamic vinegar.

He is using his words to request these items. He is using his words to comment on the birthday packages on a chair for Daddy and how he wants the blue bag or the ribbon off of one. He uses his words to ask about the lights and whether they will go on or if they stay off. He uses his words to get a hug from his sister. Children are hungry and babies are getting over stimulated by the commotion in the restaurant as more pizzas zip by but do not end up on our table for an hour. It is a recipe for sensory overload but somehow Johnny is sitting there happily looking around and eating his bread, olive oil and balsamic vinegar.

I am not sure if anyone is noticing that Johnny is no longer silent at the dinner table. Maybe they are noticing but have decided to just enjoy it. I know how much hard work Johnny is putting into learning to speak and how much it would mean to him if family made a big deal about it and gave him feel like a “Rock Star”. Social praise is its own reward for most people but for a child on the spectrum it can be a very important currency. A friend of mine once told me that when it comes to Autism, if his hard work is not acknowledged by the people who are close to him or who teach him then why should he put in the effort? When you have a developmental delay you are being evaluated by well-meaning professionals all the time and therefore are always being reminded of what you can’t do with more goals placed on you to achieve. I would suspect that your self-esteem would need to be built up in order to be happy and to be able to move forward.

The inability to speak or social challenges is usually what most people see and think that he is overcoming.  As Johnny’s parents we know its more then that and instead think about how hard it is for Johnny to handle the sensory input and that at times is the real disability. It must be so hard for him to use his words, think of what to say and compute all the chaos and visuals coming to him all at once and not just want to cry. I think they notice how happy he is by the big smile on his face that he is with his family. His Grandparents notice how happy he is. I just want to bask in the smile on his face as I watch him cuddle his sister or enjoy her hugs.

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This evening, Johnny was able to push past his disability and just be there with his family and enjoy himself. I am so proud of him. We will be there Johnny in the hours afterwards when you cry over a toy that you can’t find or dropping something that signals to Mommy and Daddy how hard it truly was for you to be in the restaurant.  We understand.

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