When you become a member of the Down syndrome community, you become part of something you never knew you wanted.
Strangers approach your child, eager to give him a squeeze, gush over how cute he is, or tell you stories about their child/cousin/aunt/other loved one with Down syndrome. Sometimes they hesitate before speaking, waiting for you to figure out that they’re lingering for a reason; other times they burst out of nowhere, enthusiastic guns a blazin’. It’s a wonderful feeling to be embraced unconditionally by strangers based on the simple fact that your child shares some physical characteristics with someone they love.
Except that it isn’t.
A few weeks ago, I was standing in line at Target, unloading my upcoming purchases on the conveyor belt with Nathan in the seat of the bright red cart behind me. The lady in front of me, who was alone and about my age, was finishing up her transaction when she smiled at me and said, “My sister is 34.”
We exchanged pleasantries and she went on her way. Most of the time when I have encounters like these, I walk away excited and energized and happy to have had the opportunity to meet Someone Kinda Like Me. But on this day, in this Target, my thoughts turned to the clerk running the register.
She was young, businesslike, and efficient (which I’m sure her employer would be happy to hear), and nothing about her demeanor indicated she had noticed Nathan at all. But I wondered what she was thinking. Admittedly, what the previous customer had said was rather mundane (“My sister is 34.”), but given that we’d had no interaction prior to that statement, it may have struck her as odd.
I wondered if she had surreptitiously checked us out, wondering about the odd introduction.
And in that moment, I wished that no one noticed. I didn’t want Nathan to be anything other than a cute kid in a Target shopping cart. I didn’t want to stand out. I didn’t want to think about where Nathan will live or what he’ll be doing when he’s 34. I didn’t want to talk (or think) about Down syndrome at all.
Often, parents like me state unequivocally that we wouldn’t change our child with Down syndrome, and I know that a large segment of our society doesn’t understand that (or simply doesn’t believe us). But believe it or not, it’s true. We love our children just the way they are.
But the insistence that I wouldn’t change Nathan doesn’t tell the whole story.
If I could take away his chromosomal abnormality, I wouldn’t. T21 affects everything about him in some way, small or large. It is part of who he is, which means that he wouldn’t be the same person without Down syndrome, and I want him just the way he is – a sparkling personality full of joy and fun and activity (though I could sometimes do without some of that activity…)
But what I’d like to remove from the equation are the curious looks, the questions, the negativity, the assumptions, the exclusion, and the discrimination. I don’t want my family to be special. I just want us to BE. And I want people to accept, without qualifications, that we just ARE.
As the mother of a 7 month old with Ds, I can totally agree already with you! I have had so many people approach me to chew my ear about their nephew/cousin/neighbor/fill-in-the-blank with Ds. I guess it’s like their way of telling me they’re “down with Down syndrome.” It’s well-intentioned, but gets so old. I’m sorry, but you having a nephew whom you see once every 5 years who has Ds doesn’t pertain to me raising my child with Ds. I guess it irks me b/c people want to weigh in on Ds who aren’t parents of a child with Ds, and I feel if you aren’t actually in our shoes, you have absolutely no idea what you’re talking about. Also, it makes me feel like they look at my kid as some sort of novelty act. I feel like saying – she’s not a side-show act for your amusement! Along with having no idea what they are talking about, many times, they will start to refer to their own relative as their “downs nephew” or a “downs kid.” Again reinforcing they have no idea and should just move along and mind their own biz thank you very much! : )
Well said!
Yes. Exactly.
While I am not in the DS community, I have a child who is a quad amputee and another with arthrogryposis. Often, people have never seen anything like either of these conditions and feel the need to ask questions/make comments etc. I too wouldn’t change my children and their precious bodies- I just wish people noticed the curly hair or great smile or fun personalities first! While I do want to educate and spread awareness and am usually able to turn these conversations into opportunities to brag on my children :), sometimes I want to just be Will & Ellie’s mom.
I Have had many of those moments as well, I’ve had wonderful encounters, sparkling with encouragement and acceptance. And I have had many more well meaning, yet laced with the bitterness of “can’t you make it go away so she is more like us and we can be comfortable?”. I have had people tell me there is a vitamin regimen that will “cure” her… First of all that is just silly from a physiological standpoint, and faithless from a spiritual point of view. I believe God gave her that little something extra for a reason. And the only thing I want to do for her is make sure I give her every opportunity to learn and grow, if a good diet and vitamins will help keep the health risks of kids like her at bay, then by all means BRING IT ON! However I love every little thing about her and she does not need to be like every other child, no child needs to be relegated to that fate!
I have an almost 2 year old with DS and I am feeling so blessed that God made him the way he is because every time someone stops us to enter into his precious little world, it gives me the opportunity to talk about our wonderful Savior, Jesus Christ! I actually try to plan extra time when I shop to talk to people 🙂
This one made me cry, because it is so true. I have had a many people come up and tell me so many things that honestly I just smile and go on about my business. People forget that ever child is different and no matter what my Daughter with Down Syndrome is not like your friend’s sister/Aunt/Uncle/Sister with Down Syndrome. . . I have no idea were my baby girl will be in 5, 10, 15 years and sometimes I try not to worry or think about that but when well meaning people come up to say “I have a son this is leaving on his own and he is doing great.” I think that is awesome and I have the same hopes and dreams for all 3 of my girls. I get what they mean but most of the time I just want people to noticed that I have 3 beautiful and amazing daughters and we are not anymore special than the next set of parents. We are who we are and that is it.
This sentiment you expressed is why I like the words “Trisomy 21” so much better than Down syndrome. When I say my son has Trisomy 21 it is only expressing that there is a third chromosome 21. It is a neutral statement. It doesn’t say anything about his personality, strengths, weaknesses, or anything – just his chromosomes. Carl can be Carl. When I say my son has Down syndrome, then there is a list of possible behaviors, physical traits, abilities or disabilities that the other person can imagine and my son is prejudged no matter how kindhearted the other person may be. We just can’t get past the negative judgements of earlier times. I wish for a day when differences can become neutral and not judgemental. I think Sarah Kate has definitely achieved this from my perspective on the blog. It appears Nathan is heading down the same pathway.
Our Trey is about to turn 28 next month. When we started out 28 years ago, the opportunities weren’t available for Trey as they are for today’s children. When he was born we were told not to expect much from him. We were also told that we didn’t have to take him home. So when hubby and I speak to those parents out in public about their amazing children and ours we are doing it because so often we feel singled out, alone, unnoticed in this world. We do it because we feel a kinship, a family of sorts. We do it because we’ve had so many days where a little light in the day is all we need, someone saying in a kind way ” I know the struggles, the obstacles. It’s going to be okay.” It hurts me to think that someone in the least bit would be offended with us trying to be supportive in a world of judgement and non caring. I personally like knowing that Trey & I are not alone in our struggles and achievements.
I am very saddened by this post. I would hate for a new parent to read this and decide not to approach me when they are looking for some common ground. This isn’t about me and my need to have an ordinary shopping trip. This isn’t about whether or not I’M comfortable with what an onlooker may be curious about. Without the support of other families dealing with Down syndrome, she wouldn’t have all the opportunities she has. What purpose does it serve to create barriers between those who should be coming together? She isn’t just like everyone else, she isn’t ordinary, and I truly wouldn’t have it any other way. I have heard so many times about how people won’t approach kids with special needs – now finally, heart-breakingly I see why.
It’s been interesting to me the turn that the comments here have taken. I’m not certain if it’s because I didn’t articulate my thoughts clearly, or if people saw what they wanted to see in my words. I suspect it is a little bit of both.
I truly don’t mind when other families with a loved one with Down syndrome approach me – on the beach, in Target, wherever. I do the same thing if I’m the one that sees them first (or I don’t have Nathan with me). As I stated (without qualifiers) in the first paragraph: “It’s a wonderful feeling to be embraced unconditionally by strangers based on the simple fact that your child shares some physical characteristics with someone they love.”
What I don’t like and want to change has nothing to do with these folks. Nothing. It has to do with all of the other people in the world who look at Nathan and see Different From Everyone Else.
I’ll confess also that I feel the way I do because, in this one regard, I’m selfish. I’m an introvert by nature, and I don’t like to have attention drawn to me – particularly in a public place. It’s difficult – nay, exhausting! – for a natural introvert to live in a fish bowl at all times. Add to that the pressure of being placed on a pedestal that you don’t deserve, and I long for the day when families like ours will be viewed as just another flavor of ordinary.
Andi,
Yes you did state without qualifiers in the first paragraph “It’s a wonderful feeling to be embraced unconditionally by strangers based on the simple fact that your child shares some physical characteristics with someone they love.” Your next sentence in large bold face type was “EXCEPT THAT IT ISN’T” So, I guess I’m still confused.
Please know that yes, I literally shook for a couple of hours when I got up the nerve to approach a family for the first time. I had a new baby and hadn’t had much luck finding a support group in my area – not that I even asked for the family’s support!!!! I now I wonder what they were really thinking. I know it’s hard to put your innermost feelings out there. I just feel strongly that you should be aware of the perception you may leave. I do feel that our kids have so many opportunities and acceptance levels because of the families that came before us like Kim’s and Michelle’s – thank you Kim, Michelle, and Tyler!!
I love your last paragraph of your response and please know that I in no way mean to be unkind to you. We all have our differences (even if we share a flavor:)
When my son, who is a person with Down Syndrome, was 12 (he is 32 now) we were at a gathering of friends and family– he sat off my himsel playing a Hsndy held video game. “Tyler,” I said, “why are you all by yourself?” I was concerned that someone had been unkind to him. His reply reminded me that I do not always know what he wants or needs. “Mama, there are no peoples with Down Syndrome here.” the others had tried to include him, no one had been unkind– but I became aware that day that it is so difficult to be disabled in an “able” society. Today, Tyler is employed, lives on his own and is actively involved in the “real world”. He is also very active in his own social circle of adults with DS. That is his world where everyone “gets it” and he doesn’t have to work quite so hard to participate and fit in. When we were approached by strangers througout his life, I realized that day, it was about sharing and reaching out. Yep, we sure have had our share of “well meaning, but hurtful” interactions– such as the sweet elderly lady who told us “I think it is just wonderful that you take him out in public like you do”. I do not mind the encounters at all. It affirms to me that we are who we are– a family with a remarkable son who invites interaction and teaches me daily has changed our family and how people see us. If people want to make a connection– that is ok with me. Today, it is
my remarkable young man who reaches out to families he sees who
have a child with Downs. He loves to engage them and imam proud indeed that he does. Change him? Never. Change people we encounter who interact with us in a positive connecting way? No, not ever.
Andi,
Yes you did state without qualifiers in the first paragraph “It’s a wonderful feeling to be embraced unconditionally by strangers based on the simple fact that your child shares some physical characteristics with someone they love.” Your next sentence in large bold face type was “EXCEPT THAT IT ISN’T” So, I guess I’m still confused.
Please know that yes, I literally shook for a couple of hours when I got up the nerve to approach a family for the first time. I had a new baby and hadn’t had much luck finding a support group in my area – not that I even asked for the family’s support!!!! I now I wonder what they were really thinking. I know it’s hard to put your innermost feelings out there. I just feel strongly that you should be aware of the perception you may leave. I do feel that our kids have so many opportunities and acceptance levels because of the families that came before us like Kim – thank you Kim!!
I love your last paragraph of your response and please know that I in no way mean to be unkind to you. We all have our differences (even if we share a flavor:)
What I said was contradictory, but not mutually exclusive. I enjoy the encounters, but I hate that they have to occur at all. I don’t like to be in the spotlight, and it’s unavoidable when you have a child (or, in my case, two) who stands out. I don’t think it’s so terrible to admit that I’d occasionally like to just blend into the crowd.
I obviously can’t speak for the family you first spoke to, but I know that I have never thought anything negatively about people who have approached me. I didn’t mind the encounter at all – what I did mind was what came after, when the young cashier who wasn’t part of the conversation spent the next couple of minutes pretending not to notice that my son was different.
Thank you Andi for responding and explaining further. Best wishes.