I spent a long time on the phone with Social Security today. If you've ever called a government office you're probably already nodding your head knowingly. After a few minutes fighting with the automated system I was finally transferred to the extension where I could speak with a live human being. Great! While on hold for the live person the voice recording told me I could have someone call me back and I would not lose my place in the line. Even better! After hanging up, I picked Connor up to give him a bottle and went around doing some one handed straightening in the living room.
About ten minutes later the phone rings and it's Social Security calling me back. I get on the line with a nice sounding woman. I explain to her that I am calling to request an appointment to apply for SSI disability for my sons.
"Sons?" she asks.(emphasis on the plural)
"Yes. I had identical twins and they both have Down Syndrome." I state this matter-of-factly and the words don't sting when I say them. What a difference 9 weeks makes.
"So they both have it?" (at this point the over tired, not so Christian sometimes person comes out and in my mind I think, 'And they say my sons are going to be delayed mentally?')
"That's right. They both have Down Syndrome and I need an appointment to apply for SSI." I'm smiling, hoping she can hear in my voice that I don't completely hate her for her confusion.
"Oh! That's so great! They are so happy! I used to work with kids. Those ones are always so happy!"
I hold my breath. I count to five. She doesn't know any better. I wish she had been here all morning seeing my "always happy" babies as they whined and fussed and just generally hated life. Nothing I did seemed to make them happy. They wanted something but neither they nor I was lucky enough to know what that something might have been.
"So about that appointment..."
The thing that I have learned being a parent to my sons is that generalizations, even seemingly positive ones, can irk a person. I know I was at fault for this before as well. Yes, nearly every person I have ever been blessed enough to encounter with DS was happy at the time of our interactions. But I know now that even though my sons may have an extra chromosome it is not the one that precludes them from having a bad day or a crabby morning. I'm sure one day they will both show me what an actual full blown temper tantrum looks like. Oh, the anticipation. The point is, I wish people realized that just as claiming something general like all Jews are cheap is the same as saying all people with DS are perpetually happy. Admittedly the later is probably more socially acceptable if only because it sounds so positive and upbeat and not racist.
Maybe I am alone in this. Perhaps I shouldn't be annoyed that people want to be thrilled at our luck to have *two* babies with DS. (Wow! God Blessed you!) (He did but for so many reasons and in so many ways) I adore my sons. I cherish them even when I am exhausted and bleary eyed and getting peed on (again)at 3 AM. I know that there is a reason why I was chosen to be their mother but I am not privy to that information as yet. I wonder if other parents of kids with DS get annoyed by such generalizations. Maybe it is less annoying the further out from diagnosis. I'm new at this still, I don't know what to think.
The bottom line is this- I want people to look at Casey and Connor and see them for who they are. Gorgeous boys who will steal your heart just as fast as they will pull your hair! They are babies first and foremost. They are blessings just because they are alive and well. I want people to look past the diagnosis. The only generalization I want in regard to my boys are that the twos are terrible. They are, after all, just little boys.
On a final note, I did finally get an appointment booked and it only took 45 minutes! Well that and 2 500 page worksheets! I love the government! They are always so efficient. (Are lies as bad as generalizations?)