Why Are We Afraid of Down Syndrome?

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on February 19, 2010. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Of all the things that can go wrong with a child - cerebral palsy, cancer, emotional issues, teenage rebellion (drug use), etc. - why is it that Down syndrome seems to strike the most fear in our hearts?

I'm not being judgmental...I was right there, too. When Eon was born (odds were 1:20, declined amnio) and we were told within minutes of his birth that he had Ds, I was terrified! It felt like the air had been sucked from the room. The fear abated when I finally held him and looked into his sweet face, but I won't deny that it was my first response.

I think back to that, now that I know my fears were completely unfounded, and wonder if I would've been as afraid if it had been something else. I like to think that I would've been, but I don't know.

I don't think we're really afraid of actual Down syndrome, but rather the image of Ds that we have in our heads...the adult with Ds in our childhood neighborhood with the institutional hair cut and the garbled speech...or the kid with Down syndrome at our school coming out of his special ed class at lunch who always tried to hug us...or our great Aunt Sue's memory of her little "mongoloid" brother who was a burden on the family until he died at 25.

The reality is that Down syndrome doesn't look like that anymore. Early intervention and medical advances have changed the face of Down syndrome.

First, people with Down syndrome don't suffer. This is a group that embraces life and expects us to do the same. In the words of American Idol contestant Maddy Curtis (who has 4 brothers with Ds), "They see the world in color and we just see it in black and white."

Second, they are not a burden. Babies who are born with Ds today are expected to live independently as adults with only minor support. We are seeing young adults work meaningful jobs, attend college, and even marry.

Third, they are more alike than different. Kids with Ds will learn to do all the things typical kids do...walk, talk, read, attend school, fight with siblings, etc...it just may take them longer. They can be fully involved in sports, music, dance, karate, etc.

There are some health issues associated with T21. Most are minor and easily corrected and not every kid will have them. It's absolutely possible to have a perfectly healthy baby who also has Down syndrome. Heart issues are scary, but often don't need surgery and if they do, the surgery is considered routine and has a high success rate.

If we have other kids, we're often worried over how Ds will affect them. I know I did. Good news! Siblings of those with Ds have been shown to have higher levels of empathy, compassion, and tolerance than siblings of typical kids. Aren't those qualities we want our kids to have? Studies have also shown that parents of kids with Ds are actually more likely to stay married than those without.

It's not a cake walk. Parenting seldom is. All kids have challenges. With six kids, I know this better than anyone. With Ds, at least we get advance notice of what some of them may be.

Apparently, I'm a Pollyanna

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on November 3, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).

Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.

There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)

I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.

Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?

Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!

Not My Proudest Moment

EDITOR'S NOTE: This post originally appeared on Genetically Enhanced on August 20, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Let me first set the stage for this incident...

• It was Sheridan's first birthday.
  
• Also, on that day, I found out that Sheridan's early start services will (potentially) no longer be covered by the State of California due to a change in the Lanterman Act that now requires ALL persons receiving assistance related to a disability to first use up whatever your insurance will pay for. And I found out that even if those services are not the same quality, or have a longer wait list, etc. etc. we still cannot get the services he is entitled to - needs! - with the same therapists who have expertise in birth to three (I'm oversimplifying here, and every person's experience will be different depending on their insurance coverage).
• So I found out that I will have to fight both our early start regional center AND the insurance company at the same time to ensure Sheridan retains his services (doesn't everybody know fighting a war on two fronts is disasterous?).
  
• AND I found out that the speech therapist who told me Sheridan was ready for weekly ST did not request that in her report. Because "he's so young, we've never requested it for anybody his age before, he'd be the first." So, they are letting his chronological age determine his services rather than his developmental readiness? So, I had a rather, um, assertive conversation with her.
• And the shot in my rear end the doctor gave me to help with my severe back pain was wearing off as I was caring my 19 pound son on my hip.

So, with all that in one day, I'm at a local store and...

A man likely in his mid-twenties was behind me in the checkout line. He commented on how striking Sheridan looked.

++++++++++

He's really cute. And there's something really different about his look. He looks exotic.

Oh, thank you!
His eyes are really interesting. His features are really neat. Is he exotic?

[Okay, not sure exactly what he meant by all this exotic talk, but whatever.]
Well, he has Down syndrome and maybe you're noticing some of his unique features?

Oh, wow. So is he retarded or what? You know, how they are all retards?

No more f***ing retarded than you.

++++++++++

Sigh.

I told you it was not my proudest moment.

No matter how exhausted, no matter how frustrated, no matter how difficult being an advocate is at any given moment... it's the life we all live, breathe, sleep, eat, and LOVE.

And I feel like I let Sheridan down. I feel like I let people with special needs down. I know I let myself down... I really struggle sometimes with giving myself permission to not fight every fight.

But I feel it is my duty, my right, my heart's desire, my son's need that I fight. So I'm really regretting that I let my gaurd down and got so defensive on this one. This man's comments came from a place of ignorance, and I have the ability to at least try to fix that.

I still don't know exactly why I had the response that I did (although I do have a sarcastic streak). Maybe I was being the quintessential Mama Bear protecting her cub. Maybe I was just angry that somebody called my son a retard on his first birthday. To his face. Maybe I felt ganged up on after all the other stuff that day. But we all face "stuff" everyday, and will face plenty more and bigger "stuff" in the future.

I just feel the need to apologize. So, I'm sorry for letting my community down. And I'm sorry for letting Sheridan down.

I know I have a lot of fight in me. I know I'm a strong advocate for both my son and other people with special needs. I guess I just need to work on allowing myself to not feel that every fight is my responsibility.

Connections and Retraining the Inner Snark

EDITOR'S NOTE: This post originally appeared on Only Who I Am on July 31, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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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.