It is no secret that I love my little lady to the moon and back.
She makes the world a little brighter, a little better, a little simpler whenever she smiles.
She makes me laugh, she makes me think, she keeps me young and she ages me prematurely.
Her clinical diagnosis includes "mental retardation" but this girl is not a "retard". She is smart and funny and full of life and joy.
And when you use the r-word to describe anything you don't like or when you think something is stupid or ridiculous, you are making fun of my little girl.
When you use the word(s) "retard(ed)" you are being disrespectful to her journey in life; mocking her fight to make her life a daring adventure.
My little lady works harder, loves easier, and smiles brighter than anyone else I know. She deserves respect.
Three years ago yesterday, I got a phone call that would change our lives forever. Three years ago yesterday, we got the results back from my quad screen test that indicated our little lady had Down syndrome. A few weeks later, amniocentesis results in hand, the quad screen test results were confirmed.
Since then, October has become a "reflection" month for me. A time to look back and evaluate how our lives have changed since that phone call. A time of introspection.
On the day we found out, I felt devastated...and that word doesn't even begin to describe it.
A year later, I felt like I was on the offense--I joined several different Down syndrome advocacy groups and felt the fire to rid the world of the injustice toward people with Down syndrome. When people would make comments about Miss B or about Down syndrome, I immediately became a mother bear, protecting my little one.
By year two, I was exhausted of being in constant "Down syndrome" mode. And so I stepped back, and simply enjoyed my daughter and the blessing that she is...We didn't do all of the therapy-homework we were supposed to do. I didn't read every news article about Down syndrome that came out. I didn't talk about Down syndrome constantly. We all just went about our daily lives.
And now, at year three--I am trying to find the balance of the two--being mother bear for people with Down syndrome when necessary, but living life just like any other family would. As I've tried to find that balance--to walk the line of "same as everybody else, just different than most"--I have struggled. How do I make a positive change in the world for people with Down syndrome without it consuming my life?
The push to make the world a better place for my little Miss B has driven me to start a Down syndrome group here in The Village and surrounding towns. As the President of this new group, I feel enthusiastic and optimistic that we can make a difference. And I'm excited that, in our little corner of the world, I am promoting inclusion and acceptance of my little lady. However, despite my enthusiasm, I worry about my life becoming engulfed by all things Down syndrome. While I want Miss B to have every opportunity to have the good life; I think that part of having "the good life" means that we shouldn't always live in "special needs land" and that we need to be a family first--a regular ol' family--and a "family touched by Down syndrome" second.
At the same time, I have guilt that I haven't done enough for Miss B. Like the other day when a friend used the R-word and I just let it go without saying anything...I felt like I was letting Miss B down. Or when I read about all of the different therapies and reading programs and equipment and toys and foods and vitamins and experiences that are recommended for people with Down syndrome--and I know that we are only doing a small fraction of what we could be doing--I lay awake at night worrying that we are failing her.
And so three years later, I have come to the conclusion that there will always be struggles in life--things that make you worry and times when you have to push forward or pull back--and that is okay. And I've realized that I feel so blessed to have these struggles. I feel infinitely grateful for the growth and change and learning that takes place as we find our footing on this path in life. I feel blessed to wake up each morning to my thoughtful husband and three beautiful children. I feel grateful for the change that Down syndrome has brought into our lives.
And while we don't have it all figured out yet...there is no hurry, we will get there someday.
I have officially failed at the 31 for 21 challenge, now that I've missed posting for two days. I really do have good reasons for not posting...1) The internet in our hotel was down on Wednesday. and 2) Dr. C and I were driving the 12 hours back to reality all day yesterday. I'll try my best to finish out the rest of the month. To make up for it though, I'm participating in a Down Syndrome Awareness BlogHop today.
Today we were trying to tame the millions of leaves that have been having a wild party on our lawn for the past week while we were away. So while you blog-hop, enjoy some of our leaf-hopping.
In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.
Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.
(Nondisjunction is what happened in Miss Banana. I'd also like to emphasize the point that Miss Banana's extra genetic material comes from either Dr. C or myself...it's not an alien chromosome that came out of nowhere. Miss B simply got an additional copy of either Dr. C or I's genetic makeup, not a separate "Down syndrome chromosome". It is the fact that she has that extra genetic material that causes her to have Down syndrome.
As an example...it's like she got two doses of my stubbornness and one dose of Dr. C's stubbornness...NOT one dose of my stubbornness, one dose of Dr. C's stubbornness and one dose of Down syndrome stubbornness. Hope that makes sense!
P.S. We don't know if it was me or Dr. C that gave her the extra chromosome. And it doesn't matter.)
The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.
Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.
And now we come to the end of our little genetics lesson. Feel free to ask questions if you have any!
If you haven't ever been to a Buddy Walk--you are seriously missing out. The annual Buddy Walk is one of our favorite family days of the year. They really are awesome.
Here are my 10 Reasons Buddy Walks are the best.
10. The T-shirt. While usually they are pretty cool and Dr. C and I wear them throughout the year with pride, this year, I think they were going more for the "get noticed" factor. And they definitely got that right. Dr. C and I decided that we will wear these shirts again when:
a) We decide to go for a nighttime run and all of our other clothes are missing
b) We become hunters and don't want to buy the orange vest
c) We find out someone is taking pictures from space and we want to make sure they can see us.
They did make us easy to find each other when we did a little post-Walk visit to Target. And we easily spotted some other people that had been at the Walk too.
9. There are plenty activities for everyone. This year they did a carnival type thing. The kids got to play the games as much as they wanted. Heck, I could have played the games as much as I wanted. Everyone is encouraged to participate however they want to.
8. All the money raised helps people with Down syndrome. It funds scholarships for summer enrichment programs, educational seminars, family events, and more.
7. When a 20-something woman hops on the horse ride and yells YEEEE-HAAAWW at the top of her lungs in true wild-west style while moving at about .3 miles an hour...everyone thinks it's awesome. That cowgirl was living the moment to the fullest.
Most of us could learn a lesson from her.
6. You could talk about Down syndrome the whole time...or you could not talk about it at all...and both options are completely acceptable and understood. Our first year, I think we talked about it the whole time. This year, I don't think it came up in conversation once.
5. When you speak in funky acronyms (AVSD, OT, ST, PT, IFSP, IEP, etc.) everyone knows what you are talking about.
4. No one is too cool, too old, or too self-conscious to have a good time.
3. It's completely appropriate to hug everyone you meet.
2. The entertainers stay long past their original quitting time, just to make sure no one is disappointed.
1. In a sea of 300+ individuals whose lives are somehow touched by Down syndrome, we all become "typical". We bond together, support each other, and we celebrate the blessings that we have been given.
There are still Buddy Walks going on across the country. To find one happening in your area, search here.
The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.
Over the past sixteen years, the Buddy Walk program has grown from 17 walks to nearly 300 expected in 2011 across the country and around the world. Last year alone, 285,000 people participated in a Buddy Walk! They raised more than $11.2 million to benefit local programs and services as well as the national advocacy initiatives that benefit all individuals with Down syndrome.
The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is an inspirational and educational event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk in your local community!
I'm a bit of a stickler for my children pronouncing words correctly and using proper grammar. I know this is slightly hypocritical of me; I'm sure my blog posts are riddled with improper punctuation and word choice. Despite my flaws, I do make an attempt to speak correctly and I expect my children to speak well also.
T-Man is a talker. He has a huge vocabulary and can make conversation with anyone about any subject. In fact, sometimes we have to remind him that other people need a turn to talk. In all of these conversations, his pronunciation is usually flawless...at least it was until last night.
He came home from school with a tooth about to fall out of his head.
I gave it a little push, and out it came.
Poor kid, definitely going to need braces.
And now words like "police" are being pronounced "pol-isth". And "rice" is "rye-th".
Strangely, my language OCD is not bothered by this yet; in fact, I find it adorable. Although it is pretty hard to take him seriously when he tells us to "Sth-op laughing!" whenever he talks.
Love you, T-Man!!
And while we are speaking about language, in honor of Down Syndrome Awareness Month, I thought you all would like to know how to speak correctly about Down syndrome. When I first got Miss B's diagnosis, the NDSS website was one of the first places I went for information. I read and re-read reading all of their "About Down syndrome" pages a gazillion times, trying to soak it all in. I remember thinking that I had no idea how to speak correctly about Down syndrome, about my baby.Oy! I had a lot to learn!
I know most of you already say these things correctly; thank you for being respectful and sensitive and for using the preferred terms and language when you talk about my little lady and all of her Trisomy 21 brothers and sisters.
Here's the "Preferred Language Guide" from the National Down Syndrome Society's website:
Below is the proper use of language for “Down syndrome”:
• Down vs. Down’s - NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
• Down syndrome is a condition or a syndrome, not a disease.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.
em-bark: \im-ˈbärk\ to make a start
I don't know why I ever plan my future because very little of my plans actually work out. I'm pretty sure that when I was writing my "What I Want to Be When I Grow Up" essay in high school, I never once thought I'd be where I am now.
I'm pretty sure back then I just wanted to own a convertible, live on the beach, and be glamourously famous for something. So far, none of that plan has materialized. Maybe someday.
Back in Mrs. Watson's 9th grade English class when I was writing those future-plans essays, I remember reading and re-reading a quote from Helen Keller posted on the bulletin board:
Life is either a daring adventure or nothing.
Back then I thought that meant that I needed to:
1) Be a storm chaser or CIA agent
2) Travel the world
3) Go bungee jumping
I'm happy to say that my life full of daring adventures has involved crazy storms, but thankfully no espionage or jumping off of something tall while depending on a large rubberband to save my life. (I would like to have that "travel the world" part though!)
And I'm okay with that. Because I'm embarking on a new adventure that might not be as heart-pounding, but is just as daring as jumping off that bridge with a bungee cord.
I'm starting a non-profit organization with some other parents here in The Village to support people with Down syndrome and their families.
That might not sound daring and adventurous to you, but to me...I feel like I'm stepping into the air and hoping that I bounce instead of slamming into the ground. I already made some attempts at this a year ago and ran into brick wall after brick wall...but now it's time to push through and make something happen. This time, I refuse to give up or be complacent with the way things are now.
I have no idea how long I will be on this adventure. I have no idea how successful it will be. I'm simply a mom who sees the need in this area and will do anything to make life better for her daughter and others that also have Ds.
Today is 3-21. In honor of Trisomy 21--three copies of the 21st chromosome, commonly known as Down Syndrome--today the world celebrates World Down Syndrome Day.
While I usually tend to ramble on about various aspects of T21 on days like these, today, I would like to keep it simple.
(Keep it simple?? Miss Banana is shocked.)
Today, on World Down Syndrome Day 2011:
I am grateful that Miss Banana is in my life.
I am grateful for the new perspective that little extra 21st chromosome brings me.
I am grateful that our lives are fairly mundane and that sometimes I can completely forget about that extra chromosome.
I am grateful to all of my family and friends who love Miss Banana (extra chromosome and all) and stick up for her and try to make the world a better place for her.
I am grateful to all the members of my Down syndrome family that answer my questions, calm my fears, open their hearts and share their lives with me and the rest of the world.
I am grateful to all the people that have stopped using the r-word.
I am grateful to all the doctors, nurses, therapists, and other medical professionals that keep Miss Banana alive and well.
I am grateful for my two little boys who love their sister whole-heartedly and are her biggest cheerleaders.
I am grateful for Dr. C who taught Miss Banana how to sign "I love you".
I am grateful to all the other people out there with designer genes who inspire me, keep me young, and make me want to be a better, happier person.
So many of you already know this beautiful little face....
Olga turned five last month. She has spent the last five years in an orphanage in Eastern Europe, without the love of a mommy and daddy- simply because she arrived in life exactly as God designed her. One chromosome too many, and her fate was sealed from birth.
Sealed, because in Eastern Europe, babies who are born with Down syndrome are deemed unacceptable at birth. They are discarded as cast-offs of society, and when they turn five they leave the only home they've ever known...
And I wish I could say that for most of these children, leaving that home means going to a place of safety, a place of happiness, a place where they would finally know the love of a family...know what it means to be cuddled or sung to or read to, tucked in at night, prayed for, loved.
Instead, they are taken to a place that most people wouldn't leave their family pet.
A place of living @#!*% , where they will never know the tenderness of a parent, never know the security of being raised in a family, and there they will stay, one ugly, pain-filled day at a time...until they die.
I read a post last December that stayed with me to this day. It was called from baby dolls to bedstraps.The blog author wrote about Elizabeth, an orphan on Reece's Rainbow who had been transferred to a mental institution, waiting for a family to step forward for her. Her words still haunt me.
I wonder where she thought she was going as they led her out of the orphanage that day. Did she think that maybe it was finally her turn? That they were taking her to her forever Mommy and Daddy?
And when they instead took her inside that dreadful place, when they shaved her head and tied her to a too-small metal crib
when they turned their backs and
walked
away…
when they left her confused, terrified,
in a room where the wails of schizophrenic adults echo through the cold air
what was going through her young mind?
Did she wonder if she was being punished?
How long did she hold out hope that this was only temporary?
That any minute, they would come and take her back to the baby house
to her baby dolls and teddy bear,
to her best friend, Angelina?
Did she long to free her arms from the restraints
to cover her head with her hands to drown out
the scary noises
the scary sights
the scary smells?
That could be my Lily….
It could be your child.
And what if it were?
What if you woke up one morning
and by some hellish, twilight-zone twist of fate
your child wasn’t still tucked into that warm bed down the hall,
what if your child was trapped
across the dark sea
in that nightmare that is
the institution?
What
would
you
DO?
Rescue those being led away to death; hold back those staggering toward slaughter. Proverbs 24:11
Elizabeth is being rescued today, thanks to the efforts of that blogging mama, and others like her.
Olga is being rescued today, thanks to so many of you...you gave so much and created such a large grant that a family was able to step forward and start the process of adoption.
The Abells have done so much already, towards rescuing Olga. I can't even imagine all the paperwork and prayer and emotion and finances that goes into an international adoption. They have done numerous fundraisers, and will continue to do so until they can bring Olga home.
Through the help of so many, a grant of over $13,000 has been raised for Olga's adoption. That grant is set aside for the final travel costs and fees that it will take to bring Olga home. It will take every penny of that and then some.
Right now the Abells are in need of raising the $7,000 that is needed to submit their dossier for Olga. Without that dossier we don't even know if Olga has been transferred yet. Here in America you just pick up the phone and ask these questions. But here in America we don't tie five year old girls to cribs to keep them from climbing out.
The Abells need to submit that dossier as soon as possible- at the very least to find out if she has been transferred already- because I know an army of prayer warriors who is going to want to know that piece of information as well. And at the very most, it could be able to hold Olga at the baby house until the Abells can rescue her. I wish I could say with certainty that she won't be transferred- truthfully we just don't know that.
Olga has been so heavy on my heart for months- friends, I want you to know that I DO trust that God has a plan here.
I prayed like crazy for a way to help the Abells. I truly believe that there is a network of people who love Olga here in blogland...a net that is woven by God and is stretching out across this blessed country we live in, and even beyond to generous hearts in other nations. I really cannot express enough how thankful I am to be a small part of what God has already done for Olga, Peter and Kareen. But I don't think our job is done.
Olga needs us.
I don't want her to spend one more forsaken day in that place than she has to.
We're not doing a giveaway here today. I don't even think we need to do one- I know so many just have a heart to help and to give, and prizes were never the real reason we all gave anyway.
So I'm just asking- for one day- for you to do whatever you could to help Olga. Whether that's $10 or $20 or even a hundred...if you are able to help raise this money for the dossier, please do so HERE... This is the Abell's chip-in.
We're calling this A Day to Save Olga, because there are about 17 of us blogging mamas and one blogging grandpa who have set aside this day to blog, post on Facebook, pray, give and spread the word to SAVE OLGA.
Just reading the headline makes me feel sick. Where's the test that's going to cut the deaths of children with Down syndrome? Because right now, there is AT LEAST a 93% abortion rate for babies that are prenatally diagnosed with Down syndrome. I've even seen some articles claim that the rate is really 98%. THAT, my friends, is a statistic that needs to be changed.
Buried in page 3 of the article, is this gem of a quote:
"We are saving babies," said Chui. "And just because we know the results doesn't mean women have to terminate. We are saving women from losing normal children just because of a procedure."
Gee thanks, Chui. So after 2 1/2 pages of talking about how all the "normal" children will be protected...you finally mention that just because you will now know that your child has Down syndrome, you don't have to terminate. But obviously you don't really believe that because in THE VERY NEXT SENTENCE you again mention that really, this test is just to "save" "normal" children. The implication being that if, by chance, a procedure caused someone to lose a child that did have Down syndrome, so be it. Ugh.
I realize that not everyone views this topic the same way that I do. And I'm not trying to start a debate on abortion. I'm just fed up with the way that the media, with the help of lots of people in the medical field, portray having a child with Down syndrome. Are any of those people parents to a child with Down syndrome? Who are they to portray abortion of a child with Down syndrome as the best option?? I can tell you now, that I have NEVER once regretted my decision to continue my pregnancy with Miss B. Not then, not now, not ever.
She is beautiful and perfect and radiates joy and light.
Do we have hard days? YES. Having a child with special needs is not always easy--it is a different journey than the one with only typical children. But IT IS A WONDERFUL JOURNEY. It is a path on which I am grateful to be walking. I NEEDED her to help me see how much I was missing out on before. My eyes have been opened to the beauty of the world in a way that I would have never experienced without my little Miss Banana.
Why does our society not value my daughter as much as the "typical" kids? At times, I feel like we are making headway in our culture and that my child will be accepted and loved and valued...but then articles like this come up and I realize just how much further we have to go.
If more children with Down syndrome are prenatally diagnosed and then aborted...will society ever get the chance to see their true worth?
If we practice this type of genetic genocide, will our society forever miss out on the rare magic that comes with an extra 21st chromosome?
As I read over that post now and think about the lady that felt those emotions and the lady that wrote about the emotions a year later and about myself now--I'm just in a very different place. The shock has turned into acceptance. The fear has turned into faith. The tumult has turned into peace. The grief has turned into joy.
Two years ago, Down syndrome felt like the end of the world. It felt as someone had ripped my "ideal life" right from my dreams and put some big dark and mysterious cloud in it's place. I wasted a lot of time crying and worrying and feeling physically ill during those first few months of knowing.
But now? Down syndrome is a wonderful part of our lives. The diagnosis that I had thought was going to forever roadblock our happiness was actually a gateway into a whole new road with some frightening downhills (like open heart surgery and all of the other medical scariness) but when we come back up, life is even more beautiful than we could see before. The little joys that I used to take for granted, are now noteworthy events. That extra chromosome that I thought would limit my path has actually pushed me higher than I would have ever gone without it.
A lot of times when people find out that Miss B has Down syndrome, they say something to the effect of "that must be hard" or "that sounds really tough" or something like it. But it's not. Really. Sometimes people don't believe me when I tell them that Miss B is not hard. In fact, she could quite possibly be the world's easiest baby.
I wish I had known that two years ago. I wish I had believed the other moms that are further down this road that also promised that Down syndrome is not bad--Really.
My hope is that someday, some mom that has just received a diagnosis will read my post from last year. And then hopefully read my post from this year. And I would bet my post next year will be even better. And as this mom reads, she will find a glimmer of hope in that dark, mysterious cloud...and maybe, just maybe not let the cloud be as terrifying as I originally thought it to be. Maybe she will find the joy sooner.
Since October is Down Syndrome Awareness Month--I'll be spending a little more time on Ds than I usually do. (Ha! Some of you probably think that's the ONLY thing I talk about anyway! Be prepared for more!)
These are some questions people have actually asked me about Down syndrome--and experience tells me me that if one person actually ASKS the question, then other people are probably thinking the same thing, they just don't speak up.
From NDSS:Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.
This is the type of Down syndrome that Miss B has. Dr. Genes, our fabulous geneticist that studied the Miss B's chromosomes, referred to it as "your garden variety Trisomy 21". Ha!
Did you do something when you were pregnant that caused Miss B to have Down syndrome?
No. According to Dr. Genes, there is nothing that anyone can do to cause or prevent nondisjunction from occurring. It just happens.
From NDSS:
The cause of nondisjunction is currently unknown, but research has shown that it increases in frequency as a woman ages. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents' activities before or during pregnancy.
Oh, and for those of you that were taught in school that Down syndrome occurs because the mother did a lot of drugs...I (and I would guess the majority of mothers of kids with Ds that I know) am living proof that that is simply not true. I have never done any sort of drugs in my life--I've never even had a drink of alcohol and never touched a cigarette for that matter either. I have to be in some serious pain to even take Tylenol--which is just about the safest drug out there...so if you would please correct your teachers on that one, I would appreciate it.
But you're not old enough to have a child with Down syndrome?! I thought you were "safe" until you were 35?
Surprise! Due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
And honestly, Miss B is so fabulous that I am grateful that I was not "safe" from having a child with Down syndrome. We feel like the lucky ones!
Miss B is ALWAYS happy! But then all people with Down syndrome are like that I guess.
In general, Miss Banana is a pretty content little lady. She likes to smile, she likes to laugh, and she goes with the flow.
But...you should see here when you get out her favorite food (bananas) and then pretend like you aren't going to share with her. She can throw a tantrum--complete with yelling and crying--to rival the best of them.
Or, try to go outside and not take her with you...and then be prepared for her to give you the cold shoulder when you come back in.
Or watch her older brothers try to play with toys without her...and she will throw some elbows and pull some hair to fight her way in.
Trust me, she is not ALWAYS happy. She has a full range of emotions, just like people with 46 chromosomes do.
And compared to the boys, I can already tell she's going to be a bit more of a drama queen then they are...but I think that's due to the fact that she has two X chromosomes...not that she has an extra 21st chromosome!
I am so sorry that you will have to deal with a severely retarded child.
I know people mean well when they say things like this...especially right after we received Miss B's diagnosis...but...PLEASE don't say this to a mom with a brand new child with Down syndrome. No one knows the full capabilities of ANY child and it kind of stings when people automatically assume that Miss B will never learn and will never be able to participate in society in a meaningful way.
From NDSS:
Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.
I know the term "mental retardation" is not the favorable term right now...especially since the word r*tard is used as derogatory slang. But what should I call Miss B's diagnosis?
While I don't prefer the term "mentally retarded"--mainly because of the negative stigma that the word r*tarded has taken on--when used in the medical sense, I don't cringe as much. It's not my preference, but it has been used for years, so I don't get all worked up about people using it as part of her diagnosis. If you use the r-word as slang though, you are making fun of my daughter and I become mama bear. Just FYI.
Recently though, the federal government changed their wording to refer to people with Down syndrome as having an "intellectual disability". Or, you could also just simply say she has a "developmental delay." Either one is perfectly acceptable.
I have heard the term "handi-capable" and I like that one--probably not going to show up on government forms though!
Those are just some of the questions I've gotten in the past few months. If you have any other questions, please let me know!
(Sorry, not sure why it's not sized right!)
After mentioning things like this, I almost always get the "what's the big deal?" question. I had a whole answer typed out myself...and I wrote a whole novel about it on my facebook page...but then I saw this (copied below)...and who to answer this question better than an individual with Down syndrome?
My daughter's disability is not a joke. It is not something she can change--she will always have an extra chromosome. It is up to the rest of us--those of us on the outside of having special needs--to make a change in the world for those on the inside. If we all rally together, if we each commit to having a society where every member is valued and encouraged; if we encircle those that are different from ourselves with love and respect, the world will change. I know it. Will you be part of the solution? Will you go take the pledge right now and make a change?
Back in September an athlete named John Franklin Stephens wrote an amazing op-ed on why the R-word hurts him. I've had a few people request a link to this speech and I myself had trouble finding it, so I'm posting it here.
So without further ado...
Using the word "retard" to describe me hurts
By John Franklin Stephens
September 1, 2008
A lot of people are talking about the movie "Tropic Thunder." One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another.
The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it, say that the term is being used by characters who are dumb and shallow themselves.
You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called "irony."
So, what's the big deal?
Let me try to explain.
I am a 26-year-old man with Down Syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job.
Every day I get closer to living a life like yours.
I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to over 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone's voice.
The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.
We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.
That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.
So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind.
I want you to know that it hurts to be left out here, alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.
You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references.
Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.
Last, I get the joke — the irony — that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.
That is why using "retard" is a big deal to people like me.
John Franklin Stephens is a Special Olympics Virginia athlete and Global Messenger who lives in Fairfax, Va.
I think Miss B is getting to "that" age. The age where she's not as much of a baby and people are starting to notice that she isn't doing the typical one year old things. It seems like now that I say she is one, people are a little more cognizant that it isn't typical for her to still be riding around in her infant carseat.
And after asking how old she is, the next question is ALWAYS about if she is walking or not yet. ALWAYS. Really. As soon as you say, "one year old" there is some sort of automatic conditioned response that leads people to say, "Is she walking yet?" As if walking is the only hallmark of being one. Forget about talking, signing, eating table foods, getting into cupboards, loving to read books, etc...no one cares about anything except that ONE gross motor skill. But I digress...
Anyway, I have had a string of events recently that have made me wonder who knows that Miss B has Down syndrome and who doesn't.
The first event came when I was talking with some people from church. I said something about Down syndrome, and a lady that sees Miss Bannana EVERY week--and holds her often--looked at me, bewildered, and said, "oh, do you know someone with Down syndrome?" Um, yeah. MY DAUGHTER. It made me laugh because obviously she had no idea. Who would have thought someone that has seen her consistently for months would have no clue?
The very next day, I took Miss B to a doctor's appointment and the nurse told me that she wasn't sure that Miss B had Down syndrome or not--she had to check her chart to find out.
Right after that appointment, I ran to the store, and as I was checking out, the cashier girl told me she has a sister that is 15. And me, not connecting the dots, thought: that's-great-why-is-this-girl-talking-to-me-about-a-random-sister-I-just-want-to-pay-for-my-stuff-and-get-out-of-here! And then she was asking me all sorts of questions about Miss B, which I thought was a little odd...(And I STILL wasn't connecting the dots!) Until she asked if we had gone to the BuddyWalk in the fall. Then it dawned on me that this girl had instantly known that Miss B has Down syndrome because her sister has Down syndrome and that we were part of the same club. I sure wish I had clued in earlier--I would have chatted more!
My point is--some people know right away. Some people aren't going to know at all. Some people will wonder (especially now that she is getting older) but won't be sure. And each of those things is OKAY.
Because Miss Banana has Down syndrome. It is part of who she is. It is part of who we are as a family.
But just PART.
People can get to know us because of that part (like the connection with the cashier girl). They can get to know us without it (like the lady from church). Or they can wonder and ask questions about it--or not.
We love our Miss Banana for who she is--ALL of who she is--and if other people know or don't know about her having Down syndrome so be it. She's perfect either way.
I'll get back to our Spring Break Recap sometime soon (you all really do have to see the cute shirts/dresses that my sister and I made for our kiddos...and now I know how to applique! woot!)
But I have to admit that I've been having some what of a pity-party for myself. It's those darn comparisons that do it--and no, I have not been comparing Miss B to anyone--I've actually been comparing ME to other moms. And not just your typical mom...other moms whose kids have Down syndrome too. And whenever I compare, I always come up short in the "doing it right" category. Or in the "I wish I was doing that" category or the "how come I don't have that?" category. And I look at my life and think "why does it have to be hard??" Ugh. All the comparisons put me on the 5 o'clock Express Train to Pity-Party Central.
And honestly, Pity-Party Central stinks. It's a miserable, lonely place.
As I read other people's blogs...I have been completely jealous of the playgroups and support groups that other people have--while I don't even have ONE friend that has a child with special needs...(although Addy is working on it!!) and I KNOW that there HAS TO BE other kids with Down syndrome around here...somewhere. Miss B's various therapist have mentioned 2 kiddos that are just about Miss B's age...and I have given the therapists my info to give to those moms, but no response. Maybe they don't need a friend as much as I do??
And then the other night on the soccer fields, I saw a little boy, about 7 or 8, that had Down syndrome...but he wasn't anywhere near any adults--and I thought he might think it was a little strange for some random lady to start talking to him...plus Fearless was about to wet his pants, so we just kept walking. And so the pity party continued...
And then I went to that reception for World Down Syndrome Day that our nearest support group put on--a group that is centered in a town that is over an hour away from us. All the people there live in The City. And we live in The Village. So while everyone else was talking about their latest playgroup or comparing notes on different therapists...they would occasionally ask us where we are from. Or how old our daughter is. You know, the polite-get-to-know-you questions that everyone asks. The same questions the same people asked us last time we went to an event. In other words, they don't know us and when they only see us once every 4 or 5 months, they aren't going to get to know us. It stinks to not even fit in with people who know!
I hate Pity-Party Central. It doesn't flow with my general disposition. I LIKE to be happy. And happiness is a choice. No one, but me, can decide if I am going to be happy or not.
So it's time to take a trip to The Land of Thinking Big. The place where if I don't like what is happening (or not happening) in my life...I change it. The place where I get up and grow up and DO something about it.
So wish me luck as I try to start a support group in our Village and the two other villages around us. I don't know what this will entail, but I refuse to accept the fact that I am the only mom around here that needs other moms in The Club. No longer will I allow myself to feel isolated and sorry for myself that there is not a local support group here. No longer will I bemoan the fact that life is hard.
Because I can do hard things.
Goodbye Pity-Party Central, I won't be visiting again.
I'm a Midwestern girl who's lived in Missouri, Utah, Missouri again, Nebraska, Mississippi and Iowa. This is my story of life with my farmer-turned-professor husband, two exceptional little boys, and one extraordinary little girl who happens to have Trisomy 21, or Down syndrome. The stories you are about to read are all real; I couldn't make it up if I tried.
