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I recently had someone at school look at E and say “is he down?”.
A lot of things ran through my head. Hm, is he down? Well, he was down for a nap, but now he woke up because two kids skipped by, talking excitedly. Is he down? No, he’s feeling rather chipper today, thank you. But I knew what she wanted to know – does he have Down syndrome? Do I just repeat the question for her using appropriate language, or just answer it?
In this case I said “Does he have Down syndrome? Yes, he does.” It was someone who works at the school and there was no reason I needed to burn a bridge there, or cause anyone embarrassment. She was asking because her brother had Down syndrome and she clearly recognized it on E’s face. We talked a little bit about her brother – he has already passed away, and it quite obviously still pained her, so we didn’t dwell on that. To me, in hindsight, it was grand to make a connection with someone associated with the school and have her know what a wonder people with Down syndrome are, because in my world, that’s one more solid brick in the foundation that is going to support my case for E attending the same school as his brother.
And just this week a young person looked at E and quietly said “My cousin had Down syndrome.” I didn’t know what to say, because I heard her hushed tone and the use of the past tense. Had he died? Why had he died? When did he die? And do I really want to get into this with a young person who seems very saddened by the subject? I honestly had no clue where to go with her comment. I smiled at her, because I did appreciate her comment, but I was at a loss, and did not take the conversation any further.
Since E was born, I’ve been busy stocking my arsenal of witty and snarky responses to comments I am expecting to get. Like the above comments to correct someone’s use of inappropriate language to describe his syndrome. Like when he does something clever: “He’s retarded, not stupid.” If he has trouble communicating or is not acting “age-appropriate” when he’s older: “He has Down syndrome, what’s your excuse?” – or my favorite, which is on a t-shirt that made me hoot with laughter the first time I saw it: “It’s called Down syndrome, you f*ing retard!”. (I am crossing my fingers that I will someday be lucky enough to receive sentiment this as a sweet, adorable subversive cross stitch, replete with hearts and yellow-and-blue DS ribbons as a border, from a friend of mine. Since she already knows about it, it’s not a secret wish, right? Nor am I fishing by posting it here, right? Cheryl? Right?)
Truth be told, I would probably hang it in my closet, which is my own little private sanctuary (no comments about being in the closet please. Ha ha, you’re all hilarious). It still makes me giggle, but it’s a bit too brash for me to display for all to see… plus I have come to realize that at this point in E’s life, most everyone who comes in contact with him just thinks he’s a darn adorable kid. Which he is. There are people who feel very sorry for him – most notably my mother-in-law (grr)* – but the majority of them don’t bring it up or even talk to us. Maybe they see him and think “oh, that poor mother and her retarded son”. If they do, they don’t say it to me, and that’s just fine. I think that the rude comments must come years down the road, when children learn to be cruel to one another and to make themselves feel bigger by belittling others. By that time, you’re not standing by your child all the time and mostly won’t have the opportunity to spout venomous witticisms at the offenders. (Besides: the comments are being made out of ignorance and low self-esteem… so what good is a venomous witticism, anyway?)
So I am working really hard to silence that inner snark, that nasty little defensive creature within me who wants to say something biting and sarcastic, because, well, that snark’s not getting a lot of business. Everyone who actually says something about E’s extra chromosome is usually doing so because they have a child with DS, a relative with DS, or a friend or co-worker with DS and they have something positive to say to me. That, my friends, does not deserve snark – it doesn’t even deserve the defensive posture I always pull myself into when someone mentions his syndrome. It’s a lot of work to permit myself to be open to others who have something to say about who he is. Slowly I am realizing, though, that all they are trying to do is create a connection with me, to say “hey, I’m familiar with this and I want you to know that”. Usually it’s because the person who creates that strand between them and me was or is a special person to them. This is why I’m working hard to be open to what they’re saying and the connection they’re trying to create, because those connections – those strands – are lifelines. They’re love. They are what is going to pull me through the times when I’m saying why me? why my kid? why my family? .
Or, they may be the start of a glorious new friendship:
Setting: Target. Scene: check-out. Cast: E, on Jo’s arm, peering out over her shoulder. T holding my hand. Large Black Man (LBM) flirting with E from behind Jo.
(I only mention the color of the skin of the stranger in this setting to paint a more detailed picture – and because it is awfully rare for us to be approached as a family in a Target by a tall, burly Black man.)
LBM: “Aw, how old is he?”
Jo: “6 months.” (smiles)
LBM: “How’s he doin’?”
Jo: “Fine?” (slightly confused quizzical look)
LBM: “Oh, I’m sorry, I’m just asking because I have a son with Down syndrome who’s 18 months old.”
Jo: “OH!” – proceeds to have a very nice conversation with him and pass along information about our parent group we go to -
We regret not giving him our home phone number. In hindsight, we aren’t sure why we didn’t – perhaps because we’re midwestern and we don’t think of just handing out our contact information to complete strangers?
Yes. Connections. Hush, snark. I will work to beat down the defensiveness and open myself to the connections, even if it means that I am opening myself to the potential of being hurt at some point. It will not be the overwhelming response to my (wicked cute) son.
* my mother-in-law, after visiting and spending maybe 3 minutes all told holding her grandson, went home and told Jo’s aunt that every time she looked at him she got “so sad thinking about how hard his life is going to be”. I can’t wait until he proves her wrong. CAN. NOT. WAIT. OK OK I know she’s of a different era, one in which people with Down syndrome were institutionalized, had life expectancies in the 20s or 30s and often spent their days engaged in mind-numbing activities in a sheltered workshop because that was the option available to them. She is an intelligent woman, though, and she does not take the time to educate herself on how people with Down syndrome live today, and chooses instead to just feel pity for her grandkid. Needless to say, we send the grandparents information to Jo’s aunt instead of to her mother.
