This friend got some bad news about her son this week... bad news because his neuropsych eval went REALLY badly because the Dr. that tested him was either A) too lazy to do his job right or B) too stupid to do his job correctly. Either way this Dr. just totally fucked this family over in a BIG way and mostly he really messed up C's future... possibly forever. My friend and her husband are most likely going to go to court over this if necessary. The Dr. tested C with the WRONG TESTS and came up with his IQ being 54. Down Syndrome is typically about 70. C does NOT have an IQ of 54. Yes, he's slow. Yes, things are MUCH harder for him. He's NOT a vegetable though and he DOES learn and he is making great strides. With something like this on his permanent record it could effect major changes and problems in his life for the rest of his life. This is VERY bad. My friend is heart broken and scared for her sons future. Really understandable. I told her to call me or IM me any time. I'm always around.
This discussion lead to a discussion between The Man and I in regards to Boo. I explained to him that by the time I was relatively young I figured out that when SOME people say "Hey, how ya doing?" they don't really want to know how you're doing. They are merely fulfilling their social contract and obligation to appear to be interested. I know people like that. They're not really "bad" people. They're just... well... that's just how they are. I took me a lot longer to figure out after we had Boo that when people asked how he was doing people didn't really CARE how he was doing. They didn't want to know. They didn't want information. What they WANTED, after fulfilling their social obligation of asking about our medically fragile son, was for me to fulfill my social obligation and smile nicely and say "he's doing great, thanks so much for asking." It makes them feel good. They can say "I asked" they can be thanked for asking and have their ego's stroked for being good people and they don't actually have to KNOW anything. It's a full out win for them. They walk away thinking what a wonderful person they are... which is really what they're looking for when they say "Hey, how's Boo doing?" They want a ego stroke and to walk away feeling good about themselves. It took me years to figure that out though. I think through my haze of fear, grief, guilt, and pain I didn't see it right away -- like I normally would have. I'm a pretty observant person over all... but still... it took me YEARS to figure it out. Years. Really unlike me. I figured it out talking to my brother of all people. My brother who has a child with special needs of his own (mild and very different from Boo). He asked about Boo one day on the phone and as I told him about the most recent Dr.'s appointments and test results and up coming stuff over the phone I could hear his eyes glazing over. It's true. I could. As if he was standing in front of me and I could see his eyes glaze as he stared off into the distance. It hit me all at once with the force of a run away train hitting a brick wall. BAM! He doesn't care. He doesn't WANT to know. It HURTS him to hear this. He is pulling away and withdrawing because he doesn't want to know this stuff. It's too hard for him. I stopped talking. I think I managed to choke out a few words and make an excuse to get off the phone. People don't care how Boo is doing. Not really. I think some people WANT to care, very few. I would put my in-laws and my parents in that category. The WANT to care. They THINK they want to know. They love him. I won't deny that for a single second. They love him, yes. They adore him and they think he is a joy and a blessing. They can't handle what is real though. They can't handle the reality of Boo. It's been 6¾ years and they still don't grasp it. In a way I cut them slack because I don't think they CAN grasp it. I mean... I think they could if they really made a gargantuan effort. Truthfully though they don't live with Boo day in and day out. They don't really KNOW him. They don't understand him. They don't fully "grok" him. They most likely never will. They will always love him, but that's not the same thing.
Anyway, I'm all over the place tonight. I suppose I should be it's nearly 3am. My point is that people don't want to know. They don't want to be slapped in the face with the reality of what it is to be a SN parent. They don't want to face the fact that Boo is not typical and he NEVER WILL BE. So many years ago now I learned that when people say "How's Boo?" to smile my biggest, shiniest, fakest smile and say "He's great. Thank you so much for asking. That's so sweet of you to think of him." That's what they want to hear. They can smile back at me, and mean it, and tell me how glad they are and go on with their day. I get that. So since my entire life has been about learning to lie and do it well I excel in this now. I can slap on the fake and put on the mask and do this... and it doesn't even really bother me all that much anymore. I get the psychology behind it and so I can go through the motions.
The thing that DOES piss me off? Piss me off so big and so huge and so righteously that I want to shake people and slap them across the face? I hate it when people tell me "It'll be okay. You'll see. Boo will catch up some day and everything is going to be fine." It boils up in me a kind of rage I can barely contain. The FACT is that's a lie. That's a lie people tell themselves to feel better... to feel better THEMSELVES because it surely does not make me feel any better. It doesn't make The Man feel any better. It does nothing for Boo. It actually diminishes him, IMO. It diminishes the fact that he works SO hard and he never gives up and he sweats it out and does the best he can and always gives it all he's got to get to where he is. I minimizes the fact that he is working ten times harder than the other kids in his class and he's only getting 25% as far even though he is going full tilt every minute of every day. It minimizes the effort he puts in and the kind of little boy he is that even though he meets with failure much more often than his peers he KEEPS ON TRYING and never gives up. Boo is not typical. He never will be. What he is... he's EXTRAORDINARY. He's not ever going to be typical. He's not going to wake up one morning and find that he's just like all the other kids his age. That's not ever going to happen. Not ever. It's not in God's plan for Boo. The thing that the people that say that to me don't comprehend is that one thing is true... Boo is going to be FINE... it's going to be okay. It's going to be okay and he'll be better than fine and he'll never catch up and be like the other kids... and that's okay. It's okay for him to be who he is. Everything is going to be fine and Boo is always going to have special needs and that is fine. That's how he's meant to be. He is the person God made him to be. He's perfect for Boo. He doesn't have to be like everyone else for things to work out fine. He just has to be himself. Why is he going to be fine? Because he is happy and he is loved in a way that most people will never experience in this lifetime. He is loved so much by so many that he's going to have a charmed life. He has two parents that adore him. He's got 5 brothers and sisters that think he is a gift to this planet. He is loved more by the 7 people in his family in his six years of life (so far) than most people experience in an entire lifetime. He is fine. He will be fine.
That leads us to my last point. I don't talk about Boo. Ever. Not ever. I don't talk to people about him or what's going on with him or how he's doing or what he's learning now or what we expect from his future. I just don't. Not ever. It's.... it... it leaves me feeling very alone sometimes. Those moments when I let myself think about it. I feel isolated and alone. I can talk to The Man about it of course, and often do, but that's it. Nobody else. Everyone else gets the fake smile and cheery disposition and "He's doing great, thanks for asking." Nothing else. Nothing more. Not ever. Even the other people I know with SN kids. I just don't talk about him. He's mine. He's ours. I don't share him with the outside world. I guess this was learned, around the same time I learned the hard lesson from my brother that people don't really want to know him. So I don't share. He's all mine and they can't have him. I can't bring myself to share for many reasons I think. Not the least of which is that in a small way this is my little way of wrapping him in bubble-wrap and closing the world away from him. Away so they can't hurt him... or mostly me. I'm mostly okay with that... but sometimes it feels lonely and isolating.
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