Come Buddy Walk with us, please?

Our Buddy Walk is a fundraiser for the local (Oregon & SW Washington) Down syndrome parent and self-advocate group, NWDSA. They are a great group that we were happy to find when we moved to Portland. Even though our son is 6 so is technically a year too old, we still go to their Open Arms playgroup because we love the people so much. If you would like to donate to our team, Biscuit Patrol, you can get there through tinyurl.com/BiscuitPatrol2011.

However, we'd rather see you there that day than have your money. For me the Buddy Walk is about building community. Coming out that day says to me that you accept people with Down syndrome as part of your world. They are your neighbors; WE are your neighbors. You can register to walk (which can be done for free if that's an issue) by following that link then clicking "My Team Page"  above our photo, then clicking "Join Our Team" and following the instructions.

[I want to apologize right here for the convoluted process required on that website. I have no control over how Kintera sets things up and no control over NWDSA's choice of Kintera to run things. I've struggled with it for years, but that's just how it is. Making that custom TinyURL was the best I could come up with to make navigation semi-reasonable.]


If you aren't in the SW Washington/Oregon area, feel free to throw a donation our way. The money will be well-spent! One of the many good things they do is to provide packets to families who are new to the area or have just received a diagnosis. And those snacks at playgroup don't buy themselves. :-)

Another option is to find a Buddy Walk in your area. Go to Find a Buddy Walk Near You to do just that. There's a U.S. map, links to list the walks by state, and a link to International Walks if you aren't in the U.S. Wherever you are you can walk "by our side" and show that people who happen to experience life with Down syndrome are not invisible to you.

Thanks for reading.

Let the Homeschooling Begin!

Last night I tweeted this in an effort to save myself some googling:

(As an aside, since their Evil Agreement with Verizon, I'm not going out of my way to capitalize or avoid using the word "google" as a verb.)

This morning I found these fantabulous tweets waiting for me:

I love Twitter, I love Portland, I think I'm going to love homeschooling. I think having goals to shoot for will give me some purpose instead of just vague "learning" -- although I don't want to miss out on opportunities for random learning that pop up. I'm very excited to start down this path, and feel SO MUCH BETTER than I have since May when I was ambushed with a Kindergarten IEP. I bet I haven't blogged about that. I think  I should, but no time today. I have laundry to fold while we wait for an ugly storm cloud to pass so we can go to the store. I wonder how many lessons will naturally happen during the trip to the store if I'm paying attention to counting them?

Cards for Donya

Want to send a card to a woman with Down syndrome for her 50th birthday? I've looked at Snopes (found nothing) and Googled (just links back to the same post I'm sending you to), so I have my fingers crossed and my heart open that this is true.

You need to go to My Blessed Life's post and comment to get involved and get the address, so I'm just going to send you there to read the story. Join in or don't, but we are going to send a card as soon as Myra sends me the address.

Hey, my baby's still in that bathwater!

I know that there are far too many c-sections nowadays.  I know that there are moms who schedule a whole package and the tummy tuck is done before the c-section is closed up.  But that doesn't mean that c-sections are never required.  Without one, without the heart monitor that showed he needed one, there would be no Biscuit.  So, as I commented on the post over at Mom's Rising, take a second to mention that you don't think ALL c-sections are unnecessary and that for some mamas and babies they are lifesaving.  Because when I read posts like this what I hear is "Sorry, but c-sections are just money makers for the doctors. Your baby should have died."  I'm giving her the benefit of the doubt and admitting that she probably didn't mean that, but the proof is in her future posts. Will those of us who have our children thanks to c-sections get a little nod, a little credit for doing the right thing, instead of just being looked at as poor dupes of the system?

Stupid mommy wars.

I'm quoting my comment here, but it probably makes more sense to go read the post it's a response to over there.

Because I had a fine pregnancy and didn't want invasive prenatal testing, we had no idea that our son had a major heart defect and Down syndrome -- but he did. Our first inkling that something was wrong was what his heart monitor showed when I had a contraction. It is a fact that without that monitor and the c-section it showed he needed (not me, him) he would have been stillborn because his defective heart could not have handled labor and delivery.

Please remember that when you rail against the medical establishment sticking their noses into a natural process like birth you are telling moms like me that our kids should have died. I'm not saying that you think that; I'm saying that when you are silent about the lives saved you are in effect saying that. Please take a moment and a line or two in your future posts to acknowledge that some of us have our precious children *thanks* to baby monitors, c-sections, and very caring doctors.

Believe me when I say that for the most part I agree with what you have written. By making monitoring a standard policy unnecessary c-sections will happen because some doctors are more worried about malpractice than actually doing the best thing for the patient(s) in front of them, as backward as that sounds. All I'm asking is that you not throw the baby out with the bathwater because that's *my* baby and I love him.

Hey, Medical Profession! Look at this!

Enjoy! I sure did. Thanks, Jennifer, for sharing this in your post. This is the kind of thing I like to see spread around the net virally.





Updated to add a title because I'm a twit that clicks Publish too fast.

Patrick Thibodeau's Basketball Game

I hope you like this as much as I did. Needed a tissue at the end though, even after I'd seen it a few times.

Visit msnbc.com for Breaking News, World News, and News about the Economy

I love the way his teammates treat him like a teammate, not someone to be pitied. *That's* what it means to be a part of the community.

Feel free to Google his name and find more copies of the video. I found a nice article on Deadspin but the comments, for the most part, were not something I enjoyed reading. Jokes about "Down's" that I wouldn't suggest anyone should expose their eyes to. So, Buddy Walks still have more work to do. On my to-do list: contacting whoever runs Deadspin about sponsoring a Buddy Walk next fall.


Updated to correct my poor grammar!

My Special Baby Crazy

I commented a little over at Pinwheels about big brothers/little sisters. I'm wondering how many of us Special Needs Mamas still felt the baby bug after having our special-er little one. In the midst of all the worry, concern, grieving for the perfect baby you thought you'd have, maybe even grieving for the birth that you wanted to experience, wondering if the older members of your family will accept and love your new one despite his differences, and the exhaustion is there time for being baby crazy for more children?

I have wanted 3 kids for as long as I have wanted kids. I'm 43 years old and I mean since 2002 (6 years), the year my husband proposed. I figured I wasn't too old to have kids but that we'd have to get moving on it as soon as the giant huge wedding happened. My husband would joke about wanting 5 kids, but I told him I could probably only manage 3 pregnancies in the time I had left so he'd better make 2 of those twins. Somehow, in that banter and joking it got set in my head that we would have 3 to make a family of 5. I just cannot shake that.

So we had The Biscuit right away and I think of him as a celebration of our wedding, though he was a little bit later than a honeymoon baby. We had The Cupcake in a celebration of finally getting to act like a family and take The Biscuit on vacation to my family's cabin in Montana. It was exhilarating, fun, and what we should have been able to do the year before, but the pediatric cardiologist said 4 hours away from the nearest hospital was unacceptable.

On the way home that year we drove home a totally different way than we had ever gone and passed through Logan, Utah. We stayed at a beautiful Hampton Inn, bought some flip-flops for me at a Wal-Mart (I place I only shop at on vacation through no great plan, that's just how it works out), and were excited that the only Starbucks was right across the street and had Grand Opening signs up. Turns out they were opening the next week, so no hot chocolates for us, but we still left Logan with a nice feeling. A feeling that for me has turned into baby #3. NOT THAT I'M PREGNANT. BECAUSE I AM NOT PREGNANT. I just know that somewhere out there Logan is waiting for us and someday Logan will be my third child. I know this with every looney cell in my looney body. I am totally open to the idea that by the time we are ready I'll be too old and Logan will come to our family by adoption. But I completely believe that he (or she) will come.

So, for now, I'm kinda perma-baby crazy. In a very specific way. And The Biscuit's special needs do play a part in it. It's guilt for what The Cupcake may need to do when we are gone. She may have to shoulder the responsibility for caring for him. And if Logan does join our family then she will have someone to share that responsibilty with. Otherwise it's all.on.her.

Duh-duh-duh! [/ominous music] Mommy guilt sucks.

I took the time to sit down and write this out tonight while making dinner (late, again) because The Cupcake came to the gate between their playroom and the kitchen and asked for some milk, by telling me her cup was "T" (empty). As soon as I took it and seemed satisfied with her signing MORE PLEASE she ran off and got her brother's empty cup and brought it to me too. So here we are. She's not even 2 years old and it seems to just be a part of her to help. She has Eldest Daughter syndrome, and there's not a darn thing I can do about it. Lucky Logan.

Dear President-Elect Obama,

Dear President-Elect Obama,
Originally uploaded by KYouell.
This is my contribution to the Message For Obama pool on Flickr. You can search for the tag "messageforobama" to see more.

Here is what the text says:

"She's 18 months old and typical. He's 3 years old, has Down syndrome and a heart defect that may require more medical intervention.

"I want her to be happy, healthy and independent. I want him to be happy, healthy and independent.

"I don't want her to have to take care of him when we are gone. To accomplish our goals we need *your* support.

"Please support Early Intervention Programs, Inclusion Programs, and help us get health care we can actually afford to use."

*****
Here is the rest of the message I wrote:

Some of us believe that abortion should not be illegal, yet we wouldn't dream of having one ourselves.

Some of us do the best we can, make a decent living and then get blindsided with medical bills and a situation that is hard to dig our way out of.

Even if I won the lottery and money was never an object for me ever again, I couldn't buy inclusion in our community for my son. That requires the participation of the community in welcoming him in.

Don't forget that some of the people that cannot (yet) speak for themselves are not babies that the anti-choice people are trying to speak for, but they are babies that are here, have loving families, and *still* need the help of society.

It's nice to finally feel good about the outcome of an election. Thank you for the hope you have kindled in my heart. Wednesday, 11/5/2008, felt like Christmas morning did when I was small. Magical!

A reason not to Homeschool?

I've been daydreaming about homeschooling my kids since before I got pregnant. Now that The Biscuit is in preschool and hating it -- I have to stay with him the whole time or he's just a panic attack in the corner -- I'm fighting myself not to pull him.

Now I run across this story and it makes me think that what I should be doing is getting him out of the house every day at school time, even though school is only twice a week. Once he gets that this is the routine I know he'll be ok, but 2 days a week is not enough of a routine that he's going to grasp it quickly. Then we have breaks because I needed to go on a trip and we came home and got sick and it really makes less sense to him. I think that he thinks that school is over. Whew, got through that. Sorry, little dude. Not *even* the case. And I don't need you regressing when you are 25. Not that I blame the parents in the story. In their case I think I would have made the exact same choices. But it sure makes me wonder what I'm setting him up for if I don't get him up and outta here every single day.

Buddy Walk!!!

It's this weekend in our part of the world. Come join us!

Sponsor me!

Join our team (Biscuit Patrol)!

Learn more about the local group your dollars will be supporting!

Find a Buddy Walk in your area!


Get off your duff and walk a mile with us!