Would you cure your child of Down syndrome if you could?

Why would people be against a cure for Down syndrome? One theory is that it's all about pride and acceptance. To want to cure something implies that the something is bad or abnormal, and people don't want to feel thay they are bad or abnormal. They want love and acceptance, and can you blame them?

Why can't we love and accept those who are different now, and if there was a cure why can't we accept that too if the person wants to be cured?

I love my daughter with all my being. I am so proud of her and think she is the most adorable thing ever. I love other people with DS, too. There is just something about them that is very special. It's like looking into the eyes of God.

On the other hand, I am also sad for my daughter in some respects. Yes, she will achieve to the best of her ability, find happiness, and have a good life. She makes people smile. But there will also be things she will never do. She will always have to struggle. She will be the butt of jokes from cruel people. She is more vulnerable to predators. She will have trouble with speech. She has a higher chance of becoming sick from a myriad of diseases including Alzheimers and leukemia.

Despite the struggles, she WILL have a good life, she WILL inspire people, she WILL help in promoting acceptance and awareness of Down syndrome, and she most definitely WILL love and be loved for who she is.

So would I cure my daughter if I could? I think I would, with mixed feelings. I would miss some things about Down syndrome, but as for the health issues, I'd kiss them goodbye and never look back.

Driving with Down Syndrome! Yeah!

There are disabilities in the world today, but if you have one, why does it have to hold you back?

Take Jon, for instance. He has a job, goes to college, volunteers at a food bank and at a hospital, goes on dates, and drives his car to all these places and more (his brand-new car he bought with his own money).

Oh, yeah, I almost forgot to mention that he also has Down syndrome.

Wouldn’t it be cool for someone to casually look over on the road and see a person with Down syndrome driving next to them? Wouldn’t it be even cooler if that was a regular thing to see and it didn’t surprise people any more?

Jon's Story with pictures

Mental Retardation is a descriptive medical term, Retard is an Offensive Slur!

We’ve all been guilty of it. We use those with mental retardation as our scapegoats because they are the weakest and most vulnerable. “That’s so retarded”. “You retard”. “I’m so retarded”. Before my daughter was born, I didn’t think twice about using that slur. I didn’t know how rude and hurtful it is, not only to the mentally challenged, but their parents, friends, and family members, too.

Here’s an example…imagine if your precious, loving, funny, bright, and beautiful child was a little slower then her peers. Imagine how hard she has to work to get to those milestones like walking and holding a bottle, even, when her friends and cousins do those things almost effortlessly.
Then imagine how sweet the victory is when she finally-after months of practice-walks those first steps! Sure, she’s a little wobbly, and maybe doesn’t walk quite like the others, but SHE’S WALKING and that’s all that matters.

You are so proud of her for working so hard, and she’s proud, too. And then…and then along comes someone who is close to you, or maybe not so close and makes a minor mistake like spilling their drink or walking a bit slow or dropping something or doing something another person doesn’t like. And then you hear it.

“You retard!”

And you cringe and hope with all your might your beautiful daughter who is not a retard at all didn’t hear that-and if she did, you hope with all your heart that she doesn’t have a clue that that slur applies to her.

People with mental retardation can and have done so many things that blow away the typical mental retardation stereotype. Check THIS out! Can your “normal” child even DO this? Go Karen Gaffney!

There will always be ignorant people who continue to use medical terminology as a slur, just as there are still racists who use the “N” word. However, I know that the good, responsible people of this world will understand and be a little more sensitive in what they say. My family, my little girl, and people the world over thanks you for not putting a part of our human family down that needs all the hands up it can get.

Thank You, Ts65Dn

Cute, fuzzy, harmless. Pink and white. Pet or pest...or something more?

Researchers have created a mouse model of human Down syndrome. This is an exciting advance-it means researchers are getting closer to helping people with Down syndrome learn better and have more understanding.

http//www.medpagetoday.com/MeetingCoverage/SMFM/tb/8199

This research will also benefit people who get Alzheimer disease.

A Huzzah to you, mighty mini mouse Ts65Dn. You and your brothers and sisters are doing important work.

Ball and Chain?

Q: Will my child with Down syndrome have to live with me for the rest of her life?

A: Probably not, but if so, would that be such a bad thing?

That was my biggest fear--to never be "free" again to be spontaneous and just go wherever, whenever.

I've thought about the possible living arrangements. Depending upon Madison's capabilities, she could live in a group home or have her own apartment (with or without roommates). She could live with one of her siblings. She could marry and live with her husband. She could live with us in her bedroom or in a guest house on the property. She could possibly live in her own home.

All of these arrangements will most likely include support of one kind or another.

I've worried about a future with a ball and chain around my ankle. However, these days there is so much support available that I no longer think that way. And Madison holds so much promise. Each day brings something new. She's bright and friendly and funny. It's exciting to see her interact with others. I think of the impact she has on people and can't help but smile.

She's concentrated sunshine.

As humans, we tend to surround ourselves with beautiful things to enrich our lives...flowers, art, music, favorite colors, a comfortable chair....why would it be so awful to have concentrated sunshine living with you, too?

I guess it wouldn't.

Hugs for All

Dear, dear baby. How do you know? You have a gift. You know how to ease pain and suffering. More than that, you seem to know just who needs your kindness and love most of all.

The man whose wife is chronically ill. The woman who suffers from migraines. The mother who had a bad day. You see the hurt, baby, and you don't hold back. I've watched you go to them, give to them your love in a long and soul-sustaining hug. You pat their backs and lay your white-blonde head on their shoulders. You smile and let them know in your own special way you love them. And their souls are filled with strength and gratitude for the unabashed way you freely give.

Never change, baby. The world needs you.

She Really IS Typical..or is she???

Madison has turned two for sure. Demanding things, throwing fits at the slightest provocation, insisting things be done "her way", whatever way a two-year old thinks is best at the time. Sure seems a lot like my boys when they were her age. As Dr. Laura said-"The most annoying thing in the world is a two-year-old."

She's still sugar and spice and everything nice, though. She's got everyone on our daily route wrapped around her finger so tight it's threatening to cut the circulation off. Seriously. We've got people waving madly and honking at us from the next lane over just to get a look from the little princess. It's been like that from day one.

The best thing about Madison is that she doesn't get a big head about all the attention. She simply loves people and shows it. And boy do they ever love her back.

I am so mad at myself!

A golden opportunity missed!

So Madison and I were at Lowe’s the other day—one of my all-time favorite places to shop. Among our purchases was a very large rectangle of plastic lattice. I’m really, really bad at measurements, but suffice it to say that this lattice board was extremely large and bulky and did not fit in the cart. We also had some flowers and soil amendment in the cart. The poor flowers were slowly being picked to death by a very squirmy two year old who had decided that she was pretty much done with shopping and wanted OUT. We got into the cashier’s line, which suddenly had grown HUGE in a matter of seconds. I’m not sure why the instant huge line phenomenon happens, but it seems to happen a lot. It’s like everyone at the store decides at the same time to go to the line, now! (Some kind of weird herd mentality…) Madison was looking at me in disgust, giving me the sign for “out” over and over again, trying to wiggle out of her seat belt and making her cute little feral cat noises. One of the flowers was now picked to a stem and she started on another, petals littering the floor below. I dearly hoped that nobody noticed. We finally got to the front of the line where the overly friendly cashier started talking to me about her friend whose baby showed signs of having Down syndrome in utero.

Uh-oh.

A warning light came on at the back of my frazzled brain, but it was so faint I didn’t notice it at the time. Too many flower petals in the way.

She proceeds to tell me that her friend was really scared about having a baby with DS because it “runs in her family” but was really happy because she was born “totally normal, nothing bad was wrong with her, she was perfect”.

So does this imply that my daughter is not normal, is bad, and is imperfect?
And why would she say this to my face in front of my daughter?

This is the part where I kick myself. I was in such a hurry to get out of there that this “conversation” was only half listened to and all I said was “Uh huh” as we hustled out the door. By the time we got to the car, all I could think of is-- gosh, we all think Miss Madison is pretty perfect, too. By the time I loaded up the girl and the goods, all I could think of is-- that lady is really ignorant and she has no clue what she’s talking about. And by the time we got home all I could think about was-- how can I figure out a way to go back to that store and tell her how she is so wrong and why didn’t I speak up right then and I am so mad at myself for not saying something!

In a perfect world I would have been paying attention and replied with: Down syndrome usually doesn’t “run in a family”. It affects people of all races, nations, and economic levels equally around the world. There is nothing bad or wrong or imperfect with a person with Down syndrome. They might have more physical or mental challenges than you or I, but they are people of worth. I feel sorry for your friend who missed out on having a baby with Down syndrome because he/she could have been your friend’s greatest joy in her life. I would have then asked her if she realized that there is a long waiting list to adopt babies with DS. That is how loved and wanted these types of people are. I would have then said to her--you seem like a good person, and I wanted to let you know the truth about people with Down syndrome. All this I would have said with a smile.

After that we would have walked out with our heads held high, and hopefully another person would have learned something about how wonderful our children are.

*sigh* but I missed my opportunity. Next time!!

Professional Ignorance

Recently there was a post on one of my Down syndrome groups complaining of her son's physical therapist who was under the impression that ALL children with Down syndrome had a mental limit of 3rd grade and they never progressed any further. The entire group was shocked that a professional who had worked for many years with children with Down syndrome had this assumption. Many of the kids he had worked with had gone on to college! This PT (physical therapist) had no idea. This type of attitude is prevalent and SCARY, especially since he should have known better through observation and education. If a professional who works with these kids on a daily basis has this misinformation, what does the rest of the world think?

It just goes to show you that people have no real idea who and what our children can be. That is why, as a parent, it is up to me and to each of us to gently educate the public. Who is "the public"? It is people like that PT, friends, relatives, the woman at the mall, the man at the grocery store, and anyone else that might not have a clue through no fault of their own. We all need to spread the good things, the surprising things, the goals and dreams of all people and things having to do with Down syndrome. Don't wait until they ask-start a conversation!

I am a PROUD mommy to Madison! (and I tell the world everyday)
http://www.cafepress.com/madisonsplace

Spreading Awareness

I wore one of my advocacy t-shirts today to one of my son's soccer practice. It looks like this:

It says-Down syndrome isn't scary, it's just different.

The reactions I get are so varied!
Most people take a quick look while in passing. I can see them read the message and absorb it. That's exciting! It's a quick message to someone that hopefully will stay lodged in their brain for life.

Some people take a look at my shirt and then always turn and look for Madison. These types never smile, in fact some of them have such sourpuss looks on their faces that I wonder if they have a toothache or something! What's wrong with them? Don't they know how special my daughter is, or really ANY child when you get right down to it?

Most people LOVE my daughter because she is super cute and sweet! She waves madly at most anyone who takes an interest in her. When she gives you one of her 500 watt smiles, boy does it ever warm your heart.

I plan on continuing my crusade for the rest of my life. To let people know that a child with Down syndrome is just a little different than any other child is my goal. And really, they are not that different at all!

It is my hope that people see how NORMAL she is and think twice before assuming that a diagnosis of Down syndrome is bad. Yes, it is different, but most certainly not the end of the world.

If you think a diagnosis of Down syndrome is undesirable, try telling that to the hundreds of families waiting to adopt a child specifically with Down syndrome.

We Are Not Ashamed! (but who wouldn't want a little something done here and there...)

If you had a child who had some physical imperfections, however minor or major, would you have plastic surgery done to improve their appearance? Maybe pin their ears back if they protruded? People do this everyday, especially in certain upscale areas of California. The number of noses, lips, eyes, and breasts that have been worked on is astounding. Don’t forget Botox, hair transplants, wrinkle creams, chemical peels, and permanent makeup. Tooth whitening is one of the most requested services in dental offices these days. Hey, and while we’re at it let’s throw in hair coloring, acrylic fingernails, and plain ole’ makeup. However minor and impermanent they are still designed to change and beautify one’s appearance.

What if your child happened to have Down syndrome? Would you consider it then? What if you earned your livelihood by making other people “beautiful” as a plastic surgeon, or a hairdresser, or an esthetician? What if you were a dentist? Wouldn’t you want your child, who happens to have Down syndrome, to have what you perceive to be the best life has to offer—what you can give them?

In considering this decision, there is one BIG concept to address. INCLUSION. Inclusion means including our children with the rest of the world. Putting them into regular classrooms. Giving them the tools and opportunity to live away from home, marry, and hold more than menial jobs. Teaching them to dress well so they can make a good impression, including applying makeup and hair coloring and perhaps even hair transplants and capped teeth. Mainstreaming them as much as we possibly can, according to their ability and desire. If a child with Down syndrome is of sound mind and is of legal age, why not consider plastic surgery? Almost everyone else does. And isn’t that what parents want and have been pushing for all this time—to be treated like everyone else? So what’s wrong with “having a little work done”?

We are not ashamed of our children’s “Down syndrome-ness”. We are not trying to hide, mask, or otherwise deny the truth. No, in fact we celebrate it! Do people who don’t have Down syndrome want and get plastic surgery? Yes, some of them. Do people who have Down syndrome want and get plastic surgery? Yes, some of them.

It’s all about the intent of the surgery. To cover up the fact a person has DS by using plastic surgery is wrong. To try and cover up or hide such a wonderful, fun, hardworking, and BEAUTIFUL segment of our population is abhorrent and sickening. On one level it’s equal to aborting babies who have DS. Then it’s all about getting rid of the “imperfect” ones. But if a person wants to have a little something done to their eyes or lips or whatever to make themselves look better--who also just happens to have Down syndrome--who are we to deny that?

Loneliness or Happiness?

Madison, we’re told, is high-functioning both physically and cognitively, and we consider ourselves blessed beyond measure. Our little girl is achieving milestone after milestone. We expect that she will be able to function in today’s society, to contribute, to be an example and an inspiration to all.

But will she be happy? Will she be lonely? Will she have friends?

Because of her abilities and disabilities, she will be a part of two worlds—the typical and non-typical. Will she find a place amongst her peers where she will have friends, respect, and love? And who are her peers, anyway? Will they be mostly typical people or mostly people with Down syndrome or other disabilities? Where will she fit in?

Ultimately, she is an individual, with her own talents and abilities. To hold a fulfilling job, have good friends, to be a good person, and marry if she finds the right man would be part of my dream for my beautiful daughter.

And, of course, to be happy.

Oh good, he's gone.

BAM! BAM! BAM! I ran to the front door holding Madison. Who on earth wanted me to answer the door so urgently? Don't they know I'm busy?

So I open the door to a strange sight. Five menacing looking-men, two on either side of the door, one on the lawn, one around the corner, one in the driveway...what in the world???

"We're the from sheriff's department looking for Mr. X. " Oh, I think to myself. They're looking for the sex offender that lives across the street. So I point to the famed house and tell them I haven't seen him in about 3 months. They cross the street and bang on that door. Sheesh, do these guys know about doorbells?

After an animated conversation with the woman who lives there-with plenty of grandkids who stay the weekends, I might add-the sheriffs leave. Hmmmm. I guess Mr. X didn't show up for his meeting with his parole officer. Maybe he went to Mexico. I'm just happy he's gone!

Hey, now we can play outside in the front yard again!

Hey You Tube jerk--yeah, I'm talking to you!

It’s a free country and we all have our right to say what’s on our mind, and yes, even be mean about it. We have our right to free speech, gosh darn it, and we can do and say anything we darn well please. Just look at You Tube—one of those powerful forces that bring both good and evil into the world. Anyone, even you, can put pretty much anything on there, including some pretty hateful things about the weak and innocent. Some of the disgusting dark side of the force crap that vomits up out of the worst parts of human souls land on You Tube for no reason other then a laugh and shock value. “Look at me, the offensive filth says, Look at me! Me, me, me!” And so, we look, drawn by the siren song of a bloody car wreck, all eyes on the filth for one powerful moment. We collectively shudder and turn away. And the poster gets his coveted attention. His precious few minutes of fame. Well, poster of filth, it worked. We all looked, we all reacted, and then, we all turned our eyes at you and wondered…wondered a number of things, such as why? And, where are his parents? And we all passed judgement on you. Yes, poster of filth, we think you suck. We think you are scum, a low-life, a person we don't want around us. Was it worth it, poster of filth? Did your little adventure into making fun of someone who is weaker than you make you feel like a big man? Shame on you! Next time you feel like picking on someone with Down syndrome, I DARE YOU to come look me in the eye and say it to my face.

Dopey Has Down Syndrome

You’ve seen it, too. The alabaster skin with the shining dark hair. The evil Queen with the really bizarre head wear. The poisoned apple. And don’t forget the adorable little diamond miners—each representing a distinct personality trait or medical condition. Some of those little men had real problems. Doc, the caretaker, had his work cut out for him watching after the bi-polar twins, Happy and Grumpy. Sleepy had a severe case of either sleep apnea or narcolepsy. The painfully shy Bashful could hardly speak around Snow White. Sneezy was allergic to life, so that counted him out for feeding the chickens or dusting, what with the mold and pollen count and all. Then there’s Dopey. Loveable, silly ole’ Dopey. When I was a child I never took notice of Dopey, never thought he was weird, or strange, or even out of place. I just figured he was part of this big and wonderful family of woodland folk who loved to sing and dance.

Then I watched Snow White again as an adult, as a parent of a child who was born with Down syndrome.

As my children and I were watching this classic, the most amazing discovery dawned on me. Dopey has Down syndrome. Think about it—he’s smaller then his brothers, evidenced by the clothing that is too big for him. His ears stick out, just like my daughter’s ears. He is non-verbal, just like some people with DS. He always has a sweet smile on his face, and jokes around a lot with his brothers. Sound familiar? He seems a little mentally slow. And he has the biggest heart in the whole place. The Seven Dwarves would not be complete without Dopey. And here’s something that I find the most interesting of all.

Did you notice how much Grumpy loves him?

Yeah, Grumpy. The guy everyone loves to hate. Well, Dopey doesn’t hate him. Dopey loves Grumpy, probably more than you or I will ever know. And Grumpy, although a very grumpy fellow, is still a child of God and needs to be loved just like anyone else.

And that is the point I’m trying to come to. We need people with Down syndrome around us. They, despite their disabilities or maybe because of them, have a huge capacity to love others. They can be really funny, making us laugh when we need it the most. They give hugs freely, without embarrassment. As a whole, they are the sweetest people I know.

I know, I know, some of you are screaming at this page about me being stereotypical. Yes, I understand that not *all* people with Down syndrome are sweet, funny, and loveable; after all, they are individuals just like the rest of us. But you know what? People with Down syndrome are a part of our human family, and they have a place here. They belong.

People with Down syndrome are individuals of worth with something to offer society that can’t usually be measured in a typical fashion.

Advocacy Begins At Home

I’m back, and I’m shaking like an autumn leaf in a windstorm. Shaking with excitement, that is.

This Friday evening was our elementary school Fall Family Festival, with booths, games, food, and prizes, and lots and lots of parents there with their children. What a perfect opportunity for the maiden voyage of the brilliant and eye-catching “it’s just different” T-shirt. I wore the brown long sleeve one, and plastered a smile on my face.

Wow, what a response. There were lots of sly stares out of corners of eyes coming my way. There were open glances. There was even a lady that came up to me and with intense feeling bubbling up in her told me how much she loved my shirt.

This was a great experience! Experiment number one was both a success and a learning experience. People looked at and absorbed the message. They were impacted by the bright and elegant design. I’m fairly certain that people who took note of my shirt will remember the words that “Down syndrome isn’t scary, it’s just different”!

www.cafepress.com/madisonsplace