A recent conversation with several people about the hardships of raising a special needs child has had me thinking about Simon and what I've struggled with in raising him. I'm not what you would call a sensitive person. I'm not what you would call a graceful or quietly dignified person. Not by a long shot. I appreciate blunt discussion and people with an abundance of candor. Even if it hurts my feelings a little, I appreciate knowing what someone is truly thinking so I can respond appropriately. I don't care if its PC. I hate PC thinking and speaking; its dishonest in my humble opinion and nothing is accomplished with dishonesty. Not to say I don't appreciate diplomacy; I mean we don't need to smack someone down and kick them with our thoughts, but be frank, be honest and we'll get along.
As I've mentioned before, I am severe ADHD and miss many social ques and socially inappropriate behavior because by the time I've noticed, I've been distracted by something else completely and forgotten that any action has taken place at all. So I'm rarely aware of the negative behavior directed at us. Its a gift really.
One of my favorite interactions I had with someone regarding Simon was a waitress at Olive Garden. He was about two years old and still in an infant carrier seat, because he was only 15-16lbs at the time. Teeny. She flat out asked me, "What's wrong with him." I proceeded to give her the condensed version. I realized sometime earlier that when asked about Simon, I was starting to sound like the grandparents from "16 Candles" and figured I needed to put a lid on it a little. I appreciated that she just flat out asked and didn't stare and scrutinize him. I was able to address her questions openly and honestly. If she just stared and wondered, I probably would have been thrown out of Olive Garden and possibly thrown into jail. I can't stand it when people stare at him and don't ask the question that they are wondering. Simon is a beautiful child that acts a little wacky and its not obvious that he has a chromosomal disorder. His is so different there are no distinct (to a non-geneticist) facial features; just actions that are unusual.
Now to get to pride. I love Simon and am proud of him. Its never occurred to me to be anything but. My child is strong, happy and stubborn. All traits I admire. He has been through more in his almost 7 years of life than I have been in my whole entire life. Having to see him go through it is very difficult. Having to worry for his life is very difficult; but ashamed? Never, not even a little bit. He brings a spirit of such a wonderful feeling there are no words to describe it. Because of him I have learned to not sweat the small stuff in my other boys. I am lucky to have a child that teaches me such wonderful things and not get caught up in the petty, petty things in life. I have been saddened by the things he is unable to do, but I slap myself in the face quickly and hard! There is nothing "wrong" with him. If anything he is on a much higher plane than the rest of us. I am proud of every single thing he is. I'm ashamed for the people who can't see it, but I don't let it consume my thoughts. I really don't care what anyone else thinks. I mean I really don't care. It has absolutely no bearing on my pride for my perfect son. If you're not sure how to interact with him or not sure what to do, just ask; I LOVE showing him off!
We are who we are. Life is what it is and its just that, our life; our version of normal. Really, I just want people to treat us accordingly.
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