I thought I'd write about a subject that I haven't quite made my mind up about yet. I have continued to reflect upon what transpired at the baby shower I went to a couple of weeks ago. I have absorbed your kind as well as motivating comments, but to be truthful, I still have not quite decided what tract I am going to take when introducing my Ian to strangers.
Some have said that I need to be bold, to walk into the room full of new people and say, "This is my son Ian. He has Down syndrome." But at the same time I don't think I would walk into a room of strangers and announce that my son has terrible acne when introducing him (much like I had as a teenager!). Others have said that they would have done just as I did and say, "This is my son Ian" and leave it at that. I for sure want to be an advocate for my son. I want to show the world that I love him ever so much just as he is, but I am still grappling with how best to do that.
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It's tough isn't it. There are many ways to be an advocate and you will find your place. I am certainly still looking for what best suits me. I have found that no two situations are exactly alike.
However, I normally do not announce Wil's diagnosis but if I notice others looking or if I get any leading question I take that opportunity to tell his story.
While Ds is a huge part of what makes Wil who he is I just don't want that to be his label (though I am no dummy, I feel sure it will be). As of late we are getting so many comments on his humor. And he is funny, in a very clever way, and I love that people are seeing that before even asking about what is "different." Wil is also getting old enough that it is clear to others. Which, frankly always surprises me. I don't see Ds when I look at him but when I tell a stranger they often give me that "duh" look.
I think the key is to be honest with yourself, first (not always the easiest thing for me to do, frankly). Emma has changed my life in so many ways; she hasn't really changed who I am, though. I've been througn - ok, mostly - the various stages of grief, anger, acceptance, yadda yadda. I think you will gain a sense, as waldenhouse aptly says, of how you want to carry on. I found that the gung-ho, ribbon-wearing, banner-carrying role was not mine - it hasn't been for the other things in my life, either. If there's a chance to educate, affirm, or otherwise expand someone's view of the world, I'll do my best to oblige. I'll also stare you down if you're eyes are lingering on my daughter. I think I'd do that in any event, DS or not, lol. Keep thinking, but give yourself some time. Don't forget, Ian's going to bring his own personality into it, too.
it is definitely a fine line. i don't want to walk into a room and announce all of my medical issues, either.
but there is a time where talking openly about Ds will feel right. And it will feel better than keeping quiet.
I was at Sam's getting a donation for our DS Association. The lady behind the desk said, "Oh, your son has Down syndrome!" Then she said a whole lot of other not PC things, but I know, truly did not mean to offend me...and I took that opportunity to really pick apart the misinformation that she had. It felt good.
Sometime it will just feel right.
{hugs}
waldenhouse- How beautiful that when you look at Wil you see HIM and only him. Thanks for sharing your wisdom. I hope I will find my footing at some point.
elbog- Thank you for your gentle guiding hand. I appreciate so much what you said. It made me take a deep breath when you said that I should give myself time to figure these things out.
Laurie- Thanks very much for your encouraging words. Thanks also for the hugs! I needed that.
Geez Annie. You are placing too much pressure on yourself. Give yourself time. You are Ian’s mommy. That’s all you need to be. Listen to those mommy instincts. There will be times when keeping a low profile will be best for Ian, there will be times when you need to stand behind him and subtly give someone a dirty look, and there will be times when you need to stand right beside him give some ignoramus a tongue lashing. You’re the mommy Annie. You know your son. You know what he needs.
yankee- Thank you very much. I appreciate the validation. You really took the pressure off.
First and foremost you need to find a way that you are comfortable with. What I was suggesting in the last comments was a strategy, but only if it works for you.
As for Meg, I don't announce anything, but if someone asks I will happily talk about it. Like Waldenhouse I haven't seen Meg's DS for years. I often wonder whether anyone else sees it, which of course they do.
But it is all about projecting confidence. If you carry on with Ian as if it is the most normal thing in the world (which it is - you're a mother to a baby) then others will fall in line with that.
Oh, and thanks for taking the time to come across and visit and comment on my blog :)
Annie, you'll know what to do. Don't feel like you need to have a plan of action. As everyone said, different situations may require you to take different approaches. You need to do what is best for you and best for Ian.
My son is 13 months, and I still struggle with how to be the best advocate for him. I struggle because while I love him, see his value, see his potential; I am still not at the point where I can embrace the fact that he has Ds. I embrace my son for the unique individual he is, and I want others to do the same.
Some parents celebrate the fact that their child has Down syndrome. I am not sure I will ever be one of those parents. Knowing this about myself, I sometimes worry that I won't be as strong an advocate as I need to be.
We do the best we can. We love our children. We help them be the best they can be, and make sure others do the same. We educate others when we encounter prejudice and ignorance. I believe the best way to advocate is by the way we choose to lead our lives--honestly, happily, and openly.
(((More Hugs)))
Whatever you do, it will come from your honest struggle. And this is a gift.
There is no "right" way, and you know this already. So it becomes about what feels most honest and authentic.
And maybe that is different each time, depending on the situation, the day, ect. . .
Your mama heart moves me deeply.
I never introduced Angela with "DS" as part of the introduction. The only time I brought it up is when other moms would start the usual discussion of where their kids are in their development. Inevitably (if I wasn't able to extricate myself from the conversation fast enough) they'd look at me with that, "Well, what is YOUR baby doing?" And so I would answer depending upon who was in the group, and how comfortable I felt (since I have been accused of being sarcastic on more than on occasion.) But generally I would say something like, "She's just started cruising furniture." (the eyes would go wide since she's 18 months old) but our physical therapist continues to give us things to do to help her keep moving on. She's such a trooper! She's determined to keep up to everyone, eventhough it's tough for her to do so. She's doing amazingly well! Especially since the doctor who told us she had Down Syndrome clearly didn't know what he was talking about!"
Having Angela reminded me about things that would happen with my other kids. I was raising 4 boys (two of mine, two were stepsons) and people always felt they had the right to ask "Are they all yours?" Who the hell are they to ask me a question like that? So I tended to have scripts ready in my head. I said things like, "What? OMG...they're MULTIPLYING! I better get them home now before there are more!"
But there were days I wasn't feeling the humor and would say things like, "I feed them, I clothe them, I wipe their noses and butts...yes, they're all mine."
One time I turned to one woman who was quite rude while asking something about one of the boys. My reply was, "You know, I don't usually like to talk about my kids in front of them, but if you'd like, I'd be more than happy to if you're also willing to answer MY questions about YOUR personal life."
Annie,
I don't have much original to say, but I couldn't resist saying something.
Although my son is now 2, his disability is becoming more obvious and bringing more questions from strangers (and in a foreign country at that!). One thing that I've learned in the past few months as Isaiah grows and isn't yet able to do what other kids can do is that I don't have to apologize to other people for his condition (sometimes I really HATE the word disability!). I don't know if this learning is even more influenced by the Russian culture, but so often it seems like people expect me to say something to cover up or deny somehow Isaiah's condition or to make things seem "better" than they really are.
I think that most of the time the other people are expecting me to make them feel more comfortable. And sometimes information does help with that, and sometimes it doesn't. Sometimes I just don't want to talk about it, but usually Isaiah is so busy flirting with the person that I can't extricate myself from the situation too easily.
All that to say (probably more than you were really looking for) that I think as time goes on we'll learn what works for us and best honors our kids.
I look forward to learning from you as you and Ian grow together (oh yeah, and Tom, too. Who knows, maybe Sylvie already has it all figured out!) ;)
If I were on your side of the Atlantic, I'd give you a hug!
Kim- Thanks for that. I really appreciate your insights.
Chris- I feel as you do. I embrace Ian but I don't think I will ever be able to fully embrace his Ds. I accept it only because it it a part of him.
Bella- Thank you for spurring me on in the quest to be authentic. Sometimes I make it, other times, not so much. I'll keep striving though.
Leah- Good for you for being strong and telling that person off! Thanks a lot for the advice.
Cristylynn- I like how you said that we'll learn how best to "honor" our kids. That truly is what I want to do with Ian.I know from personal experience that living in a foreign country has huge stresses and then add on top of that being a mom with a son with special needs must present extra challenges. A special hug to you.
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