Monday, February 8, 2010


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?)


swilkinson said...

This blog is a great idea! I love your posts and you are forcing me to become technologically savvy - not an easy feat for me. Just wanted you to know that I have substituted for a down syndrome boy for five years now and he is not always happy and cooperative to say the least. When people know I've subbed for him they always say - "Oh, he's so happy!" Hah! Try spending all day with him :) He has good and bad days and moments just like ALL the other kids in the school(and the teachers!) - no different! No two kids learn at the same speed or the same way - I see it with my own kids ALL of the time. Frustrations abound in parenting land! But we wouldn't ever trade it for anything in the world! I look forward to experiencing the terrible two's with Casey and Connor. Anytime you need to talk about ANYTHING - I'm here!

Traci(I signed my name because I don't know how it will post - remember - I'm not so good with tecnology!)

swilkinson said...

See, I couldn't even spell technology correctly!!

Jamie said...

I love hearing about the boys and I just wish I could love on them in person, so Mommas's gonna have to do it for me!

tiffany13 said...

ha ha no they will not always be happy. Especially when they don't get their way! lol Keep up the good work momma!

The Fluck Family said...

welcome to the blogging world!

MaggieMae said...

Hi Meghan - Welcome to blogging first of all. You're off to a great start. I'd be interested to hear the outcome of the SSI fiasco. As the mother of nearly 5-year-old identical twin boys with Down syndrome I recall fondly that first phone call (sarcasm isn't lying, it's sarcasm) and we don't get SSI, 5 years later. And, the ridiculous stereotypes seem to continue forever -- not any easier to hear -- but you do develop DS advocacy-proper responses to help educate folks that mean well but don't know any better. You'll also develop a list of pet peeve phrases. Top of my list is "Downs boy" as in "I knew a Downs boy once and he was always happy." Ugh!!!! LOL These comments won't irk you as much, it'll just send a jolt to your brain to trigger the educational, politically correct response. I will say, mothering twins with Down syndrome has been a phenomenal experience... hope you enjoy it as much as I am!

Tosha Tanquary said...

I just found your daughter (7 weeks old) has DS... and I so get what you are saying! It does drive me crazy!!, is it better for you now? does it get easier to hear those little comments? is one thing that really bothers me, and I know, it shouldn't...because like you said, people aren't trying to be off putting, but the rather upbeat and make me feel better about my daughter, as if I needed to... but every time I take her somewhere I get the normal ooohs and aaahhs and then here it comes...always a story about a person they know/knew with DS that "was such a blessing." As if I need someone to tell me that, because to me, she already is! Maybe my nerves and emotions are still raw...maybe I am still too new to be ok with all the comments, all the looks...but I think it is just because I want people to understand that she IS normal! She is like every other kid, she has feelings, and wants and emotions... she's human just like the rest of us! Thanks for your blog, it is going to take me a while to read through it all and get caught up. I am happy to find other mom's who are on this journey with me.