Saturday, August 29, 2009

What is Normal?

Past studies indicate that an estimated 90% of pregnant women choose to have an abortion when they receive a prenatal diagnosis of Down syndrome. How is it that the life an unborn child with Down syndrome is perceived as worthless?

A first-time mom in Boston, MA is around 12 weeks along in her pregnancy. I came across her on twitter a few days ago. I do not know her personally but I had to say something about her tweet that caught my attention. Here is a series of our unedited tweet exchange over the past few days.
She said: i should mentioned that AFTER i heard the heartbeat yesterday, she asked if I wanted to test for down's syndrome. Sux if I have to terminate

I said: you don't "have to" terminate just because of the possibility of Down syndrome.

SHetherington said: You'll be missing out on a wonderful child & a wonderful experience.

pazam2u said: please read about how inaccurate the test is. Not reason enough to terminate. People with down syndrome are wonderful.

She said: I'm sure people w/ down syndrome r wonderful & all - I'm just not having a baby if its not going to b at least 'normal'

Shannon at Gabi's World said: you can't predict how your child will turn out wheter they were born with DS or not. Many kids with DS are perfectly 'normal'. please think about if your 'normal' child were to become delayed because of a near drowning at 3 yrs old would you kill it?

She said: there is a difference between environmental factors and biological. I can test for, & therefore prevent, biological issues.

I said: just fyi, there is a long waiting list of parents who would adopt a child with Down syndrome.

She said: too bad there isn't a waiting list of parents who want to adopt 'normal' children that are older & have been abused. THOSE are the ones that need help. Not the ones who shouldn't of been born

She obviously meant to type "shouldn't have been born." Piercing. Hurtful. Cold. It made me sick to my stomach.

I walked over to Matthew, who was playing happily in his ball pool, picked him up and hugged him. He laid his head on my shoulder, happy about snuggling. I hugged him tight and swayed with him as I grit my teeth and fought back tears and the urge to wreak tweet havoc upon this first-time mom in Boston.

"Normal". Going back to her statement: I'm just not having a baby if its not going to b at least 'normal'. So it seems she views people with Down syndrome as not normal and shouldn't have been born at all. What is "normal"?

Prenatal tests cannot detect all forms of birth defects. If an unborn baby has an intellectual impairment, which is not detected in a prenatal test, is the baby not "normal"? Should this baby not be born?

If a baby is born without Down syndrome but develops problems because of prematurity, is the baby not "normal"? Should this baby not have been born?

If a baby is born without Down syndrome but is in an accident or contracts a debilitating illness, causing the baby to experience cognitive delays and/or physical problems, is the baby not "normal"? Should this baby not have been born?

If a baby is born physically healthy but is later on diagnosed with a pervasive developmental disorder (PDD), is the baby not "normal"? Should this baby not have been born?

Her comments make me angry. Matthew gets angry too when I feed him food that he doesn't like. Is that normal?

I can laugh off her ignorance and not allow her words to pierce my heart just as Matthew belly laughs in anticipation of getting tickled. Is that normal?

I choose to not let her comments prevent me from reasoning with other similar people, speaking out and advocating for Matthew and other individuals who have Down syndrome. I will go on just as Matthew continues to work on his shape sorter, trying to get the right shape into the right slot, and as he perseveres and continues to learn the other skills we are teaching him. Is that normal?

I will celebrate when I am heard just as Matthew claps his hands in delight when he successfully puts the triangle piece of his shape sorter into the triangle slot. Matthew's determination will propel him towards achieving his goals. Is that normal?


MaggieMae said...

Right on Ria. Sadly, I find that fighting such ignorance in individuals who already believe incorrectly that children born with DS are not worth being born is VERY unrewarding. Not sure you can change her mind. HOWEVER, I have never found that my advocacy efforts directed at those still undecided are ever wasted. Bring your Matthew to the local colleges where students are preparing for careers in education and for their lives (often parenthood is down the road) and to the elementary schools where young minds are still open and opinions are just being formed. Show THEM that "normal is as normal does"!

LKang said...

Clearly soon-to-be-"mom" in Boston was not born "normal" herself. She is lacking all of the fundamental qualities, i.e., compassion and the ability to love UNCONDITIONALLY, that make us human beings. Actually, I think I misspoke. I'm pretty sure I saw a tv show where alligators, yes, the cold-blooded reptilians, take care of their young, even if they are not typical, as in the case of an albino alligator baby that hatched. I pity her. As a parent of a child who was born appearing typical, yet later was diagnosed with Asperger's Syndrome, Obsessive-Compulsive Disorder, and became an insulin-dependent diabetic, i am certain that she is headed for a lifetime of heartache. Will she need to justify her child's very life every time things are difficult? Where do you draw the line between normal and abnormal? It's not as easy as she thinks it is, as the case of my daughter demonstrates, and as she will certainly discover eventually.

mrsstrickland said...

WOW. I really hope for her sake that her child comes "normal" in her book. I hate to think what will happen if she views the child as "deformed". What if the baby has blonde hair, and mom wanted brown hair?

That makes me sick. Its like you hear people terminating because its not the gender they want.

When we got our first odds of DS, it was 1 in 151 (or 181, come to find out later) and termination only crossed my mind long enough to tell the drs that it was NOT an option for us. When our odds were decreased to 1 in 780, I feel a lot better about our chances, but know that there is still a chance this child will not be "normal" (as society deems it) but in my mind, that does not matter. It is a child, and my child!

I have decided that all of our future kids (we want 3-4 total, and are pregnant with #2 now) I will not be doing these tests, because the outcome is not important to me.

Adrienne said...

Yes, I hate the usage of "not normal" because the opposite of normal is abnormal and it hurts down to the bone to think that Bennett is considered abnormal. It really does. It's unfortunate that this woman felt this way as so many do but I just hope by blogging and being advocates for our children people will see that are kids are "normal" just like everyone else and that really there should be not normal or not normal- we're all just human beings. I admire you for speaking up though. It's also too bad that people think terminating may be the easy way out but really it's not because I've "visited" several termination chat boards and those women are in some real pain and they chose to put themselves in that pain. They are going to be in way more pain for deciding to end their baby's life than they ever would have been with a baby that wasn't "normal". jmo

Chipper said...

If not being "normal" disqualifies anyone's right to exist, might as well clone rather than create.

I agree with MaggieMae's uncertainty about being able to change some people's minds, but this should be even more reason to continue to educate people, so that future generations might be able to understand that just because a child is not "normal" means they have less worth.

Let's hope that she learns to open her mind and heart before it's too late.

Far Above Rubies said...

Ria, I'm sorry you had to go through this, but she is probably young and ignorant.

Pray for her. She is not willing to have an open and receiving heart at this time. Pray for God's intervention in her life.

God bless,


Anonymous said...

I am saddened by the reminder of the ignorance and lack of acceptance that is still "out there". On the brighter side, it makes me even more grateful to all the people who have welcomed Matthew into this world with the pride and love he deserves. As to the young lady in MA, I guess she hasn't been told that autism often doesn't make itself known until 2 yrs of age... childhood diabetes can emerge at 2 or later... then there is leukemia, learning disabilities, and a host of other challenges and tragedies that can befall children without Down syndrome (I shudder at the word "normal"). then there are the parental "inconveniences" that can be brought on by "normal" (ugh) teens... dabbling with drugs, underage drinking, teen pregnancy, car accidents... then if she somehow makes it through all that unscathed, there are still the possibilities of her adult children landing in bad marriages or having their own children that face the before mentioned list, possibly including Down syndrome... in other words, perhaps she should consider leaving her baby at the hospital and returning some 32 years later, when she has seen how it all turned out and can be assured her baby would have been "worth" keeping. No one gets a free ride, and the price you ultimately pay for admission may not be as posted upon entry. Good luck to the pregnant woman in MA- when she is faced with challenges regarding her child, and everyone is one way or another, I hope she is at least given more support or kindness than she has shown, because I'm not sure how much room there is for personal growth there. Ria, we couldn't love Matthew any more. I'm so glad we have him, and he is so lucky to have a wonderful mother that rejoices in his being hers.
His ever proud Auntie Kris

Rochelle said...

You go Ria,

I think we are all called to be advocates for our kids whether they have special needs or not. There are so many uninformed people in the world maybe through all of us we can enlighten them.

I totally agree with Jasmine, I will say a prayer for this person today. I pray that the world that Alayna encounters is a loving one and accepts her as she is because God made her perfect (no matter what anyone else thinks about down syndrome and we are sure raising her to believe she is perfect just as Matthew is)!

Michelle B. said...

Thank you Ria for sharing your experience and thoughts! What a wonderful post. You are absolutely right. This has been something Brad and I have had multiple conversations about, especially after seeing your and Bill's experience. We decided to have the second trimester quad screen done, but decided this because we want to be prepared in the event that there is a likelihood of DS or other potential genetic disease. We feel that we would like to be as educated as possible in advance, and to have a little better expectation than to be caught off guard. We have no intention of terminating our pregnancy if something comes back as unusual on the tests. This is our child, one we created. Furthermore, the blood tests that screen for the potential abnormalities are simply screening tools. They are tools that give an indication to find out if further diagnostic testing is indicated. There is a high prevalence in false positives in these screening exams. The only way one can tell for sure is through CVS or amnio. And what happens if she tests negative for DS or any other genetic abnormalities, but there is complications during the birth and the child ends up with some other problems like cerebal palsy? That is not going to be a "normal" child by her standards. Does she leave the hospital alone? Obviously this woman is more concerned with her "ideal" family and a "normal" child (whatever she thinks that really means) than the actual life that she is carrying inside her. Brad and I have been amazed with how Matthew has touched the lives of you and Bill, all of your families, and even ours. He is a joy, and such fun to watch grow, even though we don't get to see him that often. I totally understand that all people want is a happy, healthy baby. Despite some complications following birth, that is what you and Bill have, regardless of what other people say. (Though I guess he is almost a toddler!) We love all of you, and know that this type of ignorance hurts, but please know that there are many others supporting you and Matthew.

M.Hilton said...

Ria, It's always so heartbreaking to hear someone say words like that. I wish others could feel the joy that I do when chase laughs hysterically or when his face brightens when he sees me. I'm glad you're engaging her in conversation.... I'm praying it'll be fruitful!

Rey Minano said...

Obviously, she is not ready for motherhood, but she will learn in time. Remember that we are all entitled to our own opinions, so don’t let this get to you and just move on, especially now that you’ve said what had to be said. Her frame of thinking is dangerous though, as history has always shown. Who was it who believed that blond-haired, blue-eyed children with properly proportioned heads should be the norm, and deemed inferior those who did not have these characteristics? Ah yes, 'normal' Adolph Hitler and his 'normal' Nazis.

Dolores Monet said...

I think that we have become obbessed with 'normal.' Any 'difference' has to be diagnosed or medicated. It is a sad world when so many babies with DS are aborted. Prospective parents need to be introduced to a family with a member who has DS. It would help.

Anonymous said...

I just read something about people when it comes to our kids yesterday that made me chuckle (and on this subject, not much does, Ria, it turns my stomach.)

The poster said that when it comes to kids like ours, she divides the world into two groups - angels and another not very nice word that starts with an A and ends with "hole." The angels make up for the other group...

It is easy to be frustrated with her. Easy to see how immature and unready to be a parent she is. Easy to feel sorry for her other children, and the kids who will be subjected to her kids.

My BIL has some friends who chose to terminate their child with DS. I dread the day we have to see them. My husband welcomes it, because we can show them what "A's" they really are, and how beautiful, and perfect, and happy our lives our with our little sweet person with down syndrome in it. I'm trying to be more like my hubby in my attitude, but it sure is tough.

I always come back to some weakness and self doubt in the person who "can't handle" the idea of an "imperfect" person in their lives. Maybe those of us who choose to keep our kids, or choose not find out for sure are just more comfortable in our own skin, comfortable that we sure as heck aren't perfect, and don't care so much about what other people think about us. We are capable of seeing what is RIGHT with our children, not focusing on what isn't.


Molly said...

It just makes me sad for her child. I was born "normal" but I have ADHD and OCD and anxiety. Yet I am a senior at an Ivy League university, happy, and looking to work in special ed.

My parents could have placed their own expectations on me, when I was little and bouncing off the walls of the classroom. They could have gotten frustrated after reviewing math facts with me for the 12th time that week. They could have moaned about getting my spelling lists early for extra practice.

They didn't. They loved me, they told me I was smart, they supported me for WHO I WAS and not what thye wanted me to be.

I'm 21 and have no kids, but I could tell you right now. there is no such thing as normal. Expecting your child to be normal is the worst thing you can do for them...

The more I read about DS, the more blogs, the more faces I see, the more I secretly hope I have a child with DS. I know my parents don't understand why I want to adopt a kid with a disbility, and I think if I have a child born with one, they'll understand.

Artie's Mom said...

Great Day! How can she look at her self and not connect with the child she carries? Normal? Is she?

Wow Ria, we sure have our work cut out for us. I think your response to her was great. I am hoping she walks away thinking about some of the comments. After all, thats all we can do. State reasonings and try to adjust thinking where we can reach ones like her.

Amy Flege said...

soso sad, isnt it? i feel so bad for those people who "dont get it!" they are missing out on something so wonderful!!
Thanks for sticking up for all our kids!

Michelle said...

I'm sorry you've encountered someone so doesn't sound like anything we say will change her mind/opinion.

Brandie said...

Wow, is that woman fooling herself if she thinks a test will tell you if your baby is going to be "normal." I go to a support group held by Goldie's EI agency. I am the only parent whose child has a genetic condition that could potentially be diagnosed prenatally. Everyone else thought their babies were "normal".

I wouldn't trade my life for normal any day. I wake up everyday thankful for my unique and amazing children.

Renee' said...

Wow, that girl or woman sounds like she is missing some type of "connection" with her unborn child. I loved my baby from the day I found out I was pregnant. We were offered the "optional" test to find out if Brittany would be born with down syndorm but we turned it down. I know why I turned it down but Tim and I didn't discuss it we both just turned it town. On the ride home I asked him if he was sure he didn't want the test and he says to me "I don't want the test, they come with a lot of false postives and I don't really care what that test reveals. God gave us a blessing when we got pregnant and I figure that God know what he is doing and we will take what we get when she is born and love her no matter what" Wow, I thought for a daddy to be he impressed me by not caring what happened or if she was born with some genetic problem. He and I were one the same page and would love this baby girl no matter what for she was our gift from God who never puts more on anyone than he knows they can handle. Matthew is your gift from God and you are his gift from God and God blessed you with Matthew just like he blessed all of us with our children. God picked for Matthew a mom who would fight for him and who as I see it loves him more than life itself. This young woman certainly is making a mistake in my opinion. Down syndrom or no down syndrom or some other genetic thing that is her baby and I don't understand how you don't love your baby and want the best for it at all times and not just when you think the baby is "normal" What is normal anyhow?? My normal is different from your normal and so on and so forth. Sounds like she has someone in her life that has taught her these things are "not normal" and she is really missing out on the love of a Mother and child. It is like no other love I have experienced in my life. I pray that she doesn't do anything to terminate her pregnancy and that God opens her eyes to the blessing that he has given her. Blessing like the one she is experiencing right now don't come along very often at all if you think about it. How will she feel if she does terminate and later decides she wants a child and can't get pregnant ever again. Will she then think about the baby she lost and finally figure out that nothing matters at all except the bond of mother and child and that your the best mother and father that you can be for that baby no matter what the situation. I read several blogs and I must tell you all that blog that you touch my heart daily and I have grown to love you and your babies and families and you have shown nothing but unconditional love and are amazing moms and I think that is what we all need to stive to be. Amazing human beings who do not care about race, sex, age, or what she sees as "not normal" God made us all equal and that is how I believe everyone should treat every other human being. I know I am rambling. I am so sorry that you had to deal with someone so closed minded and only living by her "normal" Pray for her and especially for her unborn baby that she will carry to term and if she doesn't feel the baby is "normal" that she will give the baby up for adoption to parents who have been watitng there whole lives to love a child. PEOPLE JUST MAKE ME SHAKE MY HEAD AND SHED A TEAR. When will my "normal" heart not be broken by people and there actions??

Renee' said...

I just had to go back and look at the tweets. She says that she is half mexican and they get pregnant by osmosis?? Does she even know what osmosis means?? When i learned about osmosis it didn't have anything to do with getting pregnant!! Sounds to me like she thinks she is able to play "God" and if she is so into adopting a abused child why didn't she go that route instead of having a baby that it doesn't sound like she cares to terminate. How do you hear there heart beat and in the same tought think too bad I might have to get rid of it. I think she needs help and that she is beyond any help anyone on earth can give her she needs to find "God" and have a talk with him. She is a scary individual in my opinion, and I am so sorry Ria that she spouted of her uneducated rants on you. Nobody deserves that at all and she was very ugly to you, and that irritates me. I don't know you in "person" but feel I know you through your blog and the Ria that I am sure I know I love and hate to see her hurt. Again i say some people have nerve!

Kim Ayres said...

The first post I wrote about my daughter and DS on my blog, was called Down's Syndrome is not an Issue.

I loved the first comment I got, which said, What kills me even more is when people tell me they're "sorry" when they hear that my son Cevin has Downs. I'm not. I'm not sorry in the least. So he was born a little different? He was damned to difference before conception with parents like my wife and me.

It's so true. What is normal?

And as I once replied to someone, "to parents of children with DS, the DS is such a small part of who they are. Would you love a child less because they were born with 4 fingers instead of 5 on one hand? Would you love them less because they were born hard of hearing, short-sighted, gay, had ginger hair or a tendency to vote Republican?

"Compared to who the child is as a whole, the perceived disability is a minor thing. This is the case with Down’s Syndrome."

RK said...

Amazing, Ria. You were much more patient than I probably could have been. I struggle alot with this kind of attitude... I hope to goodness that she does have a "normal" baby so that she doesn't terminate, and I hope something happens in her life to teach her a better way to life, think, and love so she can pass it on to her child.

TaraCox said...

This brought tears to my eyes when I read it :( Everyday I look at my daughter and am so thankful for her I cannot imagine my life without her. Just the other day she laughed for the first time, there is not even a word that can describe how it felt to hear it. LIFE what a beautiful choice!

Lisa said...

You rock, sister.

Monica Crumley said...

This is a sad exchange between her and everyone else. You did a great job of trying to help her see things differently, but she's obviously been indoctrinated into the "if it's 'defective' from the start, I don't want it." I'm troubled by earlier prenatal testing. Women who have never even felt their babies kick in the womb will be given the "option" of termination and we know how many already choose this "option." So sad. Really sad. When JM wakes up, I'm going to hug him a big extra, too :-)

Debbie said...

Way to go, RIA. I was in tears as I read her comments.....

You know, we are all fearfully and wonderfully made by our great CREATOR and wouldn't change JEB for anything in this world!!!


Anonymous said...

Well said Ria. I believe all lives are equal. I can never imagine how life would be without so many different variety of personalites and charactristics.... Thank you for bring one of the angels to the world :)

Donna said...

When expecting my first I was told he would have DS. My husband and were thrown for a loop but knew that if that were the case then our lives would be greatly blessed thanks to our son. My Doctor was surprised when we said we wouldn't terminate but wanted to do an amnio just to be sure and to be prepared. We learned I'd had a false positive to the test and wouldn't have a DS baby after all. Very mixed emotions about the roller coaster ride that were our lives during those weeks.

To this day I have a soft spot for DS individuals in my heart. They are wonderful and make life full & rich. I can't imagine knowingly terminating all the blessings that can come from being a Mom to such a child.

Anonymous said...

That is horrible. Just because a child had DS is certainly no reason to terminate. DS children are loving, kind and normal in their own way. I dont think this lady should be allowed a child, especially if it is "not normal" and has DS, god knows what she would do to it, she certainly would not make a good mother if she thinks her child shpuld not be borm. It's horrible people like this that dont accept DS people and make their lifes hard. She clearly isnt "normal"