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.