What I've Been Up To

I've been working. I've been knitting, and biking, and trying to get The Cupcake to school on time (Kindergarten!), and homeschooling The Biscuit (unschooling actually, which turns out to take more time & effort on my part but scares people), and wiping noses and bottoms, and connecting with hilarious people and grumpy family on Facebook, meeting tons of Bikey Friends on Twitter, and doing dishes, and laundry. Oh, and I've been helping with the accounting side of a wonderful new magazine... which I don't have time to read myself. The guilt I feel when any one of these plates that I have spinning crashes to the floor is overwhelming and leaves me in a depressed place that does no good; the depression is not so huge I can't get moving after a bit of a wallow, but it still leads to more of those spinning plates falling. Here I am, trying now to catch them before they shatter because that’s all I can manage today.

And now you know why I haven't posted.

If I have more time this weekend I will add photos to this. Otherwise you can see some on my Flickr stream.

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?

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.

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!

Busy, busy, hard, hard.

That about sums up my life right now. I have 9 tabs open in Chrome (Google's new browser that I'm trying out) of things I need to do or write about. I also have a text file with the urls of 6 more. I think that I'll just go with a bullet list for now.

• I'm going to vote for Obama. Even though Gov. Sarah Palin also has a son with Down syndrome, I am not changing my support just for that. There's a lot more to a person than how many copies of his 21st chromosome her son has. Obama gives me hope, and I enjoy voting *for* someone instead of strategically trying to make my vote count. Blah.
• I'm not going to see Tropic Thunder, but then I probably wasn't going to anyway. But now I won't Netflix it.
• The Biscuit started preschool and he doesn't like it. Part of me really wants to say, "Fine we are homeschooling!" but I know we need to give it more than 2 days.
• The Buddy Walk is coming up! Go to www.buddywalk.org and put in your ZIP code to find one near you. Then go to it. We are in your community, don't pretend we aren't. This isn't a fund-raiser like Race for the Cure and others like that because we aren't trying to find a cure for Down syndrome. This is an awareness-raiser and funds stay local to help families in your community. Please, please, please go. Another more detailed post coming on this.
• Little Miss Cupcake had her first "poo art" as in playing with the contents of a blow-out diaper. I won't be making peas 2 nights in a row again for awhile. She likes them too much.
• Today I pulled out some clothes that I was saving for her next growth spurt and put her in a dress that was mine when I was little. Totally cool! So I'll probably do a post -- with photos! -- about that.

Now, off to bed with me.

Nononononono

I just counted and preschool starts in 3 weeks.

I'm petrified.

It has nothing to do with me going on a job interview in the morning. Ack! Look at the time! To bed with me already.

Diaper Saga

Haven't had much to say lately, but our dramas do continue. The Biscuit gave us a sign yesterday that he might be ready to start potty training: he pooped in his diaper then removed it, running around the play area with poop still hanging from his cute little butt. I have now determined that the sleeping bag we use as a giant floor cushion in that room does in fact fit in our washer and that the little flimsy drying rack I have can hold the weight of about 1/3 of said sleeping bag (the rest of it laying over the deck railing). Thankfully, (HA!) it was 101 degrees yesterday so the sleeping bag dried pretty fast.

On a side note, I'm now kicking myself that we rented a house with no a/c. I remember thinking that it was no big deal because it's freaking Oregon and since it's an older house there are all sorts of windows that we can open to get a breeze from whatever direction it is coming. Which *would* work great if a good half of the windows weren't painted shut! [kick, kick!]

We have been having a problem with The Biscuit's diapers leaking overnight so switched to a nighttime pull-up. Yeah, just because Kimberly-Clark says that it's just for nighttime doesn't mean it's strong enough to take him and all his milk drinking. I've gone ahead and ordered a custom-made $50 diaper for him through Tallulah Baby. That is a fully-loaded for nighttime, with some special adjustments for his particular body shape, diaper and a cover (and shipping). I'm looking forward to it!

We are using gDiapers with The Cupcake almost all of the time now. I'm going to invest in some prefolds (unbleached India prefolds if I can find them for a good price) to use as inserts in them instead of the gDiaper flushables that we are buying now. The next step is some BumGenius diapers which should fit both kids so that even when The Biscuit is fully potty-trained they will still work on The Cupcake. Trying hard here to make a wise investment, before taking reselling them on eBay into consideration. Somewhere in there we get to buy cloth wipes too. From what I've heard (and experienced with the gDiapers) it's extra yukky to try to separate those non-flushable baby wipes from what you are flushing and washing. I'm not ready to switch to the flushable toddler wipes yet, so I think we are just going to go ahead and go the cloth route. From what I hear flannel receiving blankets make great ones when cut down and the edges are serged, so that will be my first serger project. Just as soon as I get some power to my sewing area. Ah, old houses.

Oh, and for the people who are curious about diapers piling up and smelling, I can say that I am already over-caught up with laundry like never before. Basically I have the opposite problem in that I am usually wanting to wash diapers and scouring the house for things to wash with them. I've never been more on top of the laundry than I have since we started using the gDiapers for The Cupcake. So I really do think that's a fear, not an actual issue. Maybe it's left over from diaper service days, when you kept the diapers for someone else to pick up and wash?

Updated to add links. Doh!

Homeschooling/Unschooling

I sent my husband an email and then realized it should be a blog post.

I joined a Yahoo group for unschoolers pretty soon after we moved. Not that I know what that means, but I wanted to learn. I'm one of those weird products of public school that loves learning. Go figure!

Anyway, a blog that I had been avoiding because I knew I would get hooked on it sucked me into its web today. Jessica, formerly Very Mom and Kerflop, has a new blog about her homeschooling/unschooling adventure called Balancing Everything.

None of the posts are long. These two I found especially fascinating since I am someone who also wants to take the plunge.

This one talks about her LDS-based reasons for homeschooling. While I am not of that religious persuasion I still think it is worth reading for parents whose children fall under the category of Special Education. Don't forget that "gifted and talented" students are part of Special Ed (at least that's what they called us in the 70's and 80's).

There is a post that gave me a new perspective on public school, mostly because that was not my experience. And that may very well be because I was part of the whole Gifted thing. Huh, just dawned on me that I was not mainstreamed for English and Math from second grade on.

Two more posts reminded me of me. One of my laziness and the other of how I'm trying so hard not to post things that will let scary people do bad things to us.

Then she gets to the hopeful part and the beginning of a plan.

Proof they are learning!

There's more, but not much as of yet. But I'm really inspired. And that's why I wanted to share. Now go read!

Happy Early Mother's Day to the Congresswoman from Washington State

Here is this year's message and, just because it touched my heart, here is last year's introduction of her son, Cole. He's really grown!

Of to go cry more, because it's so good that this caucus exists and because I wish my son was talking that much.

He is ours and that is that.

I was getting caught up on Sweet|Salty Kate and that led my brain to this:

I get comments like "How do you do it?" and I wonder that these people think I had a choice. The Biscuit is who we got. He is ours and that is that. Then I run across a woman who is adopting a boy with Down syndrome because his bio parents decided to only take home the typical twin from the hospital. It makes me wonder what that NICU nurse who mentioned there are waiting lists of people that want to adopt a baby with Down syndrome was really trying to say; was she offering me a choice?


(Edited to fix a spelling error.)

3 Gifts was Enough for Jesus

I took a moment this morning to read some OMSH about Christmas gifts and how less is more. As I read and nodded my head "YES!" I came across this in a comment by Amber:

...each child gets pajamas from the pajama fairy on Christmas eve, then on Christmas day they get three gifts (the rationalization is that three was enough for Jesus so it's enough for us) from santa/mom and dad. As we've had more kids they now trade names so they'll get one more gift from a sibling.

Oh, yes! That sounds like the best plan ever! It would be so nice if those pj's were made by me. And it would certainly be easy to make sure that 3 gifts per kid were handmade in America. I am officially stealing that plan.

But what to do about the grandparents? This year, thanks to the move, our wish list was "don't get us anything because we don't want any more than we already have to pack." My mom and step-dad gave us money (very unexpected and very helpful with the move!), but my mother-in-law can. not. stop. She actually said it was a small Christmas this year, but there was yet another sweatshirt from her for each of us. I don't think that she knows she's gotten us one every year for as long as I can remember. While it's true we are moving to a colder place, we are also moving to a place without a hall closet. I'm not sure if I can leave them here with the other charity donations because when she finds out it's going to hurt her feelings. I think all the coats may come with us to go to a charity up there where it's colder. And she did get us gift certificates, but had to also buy clothes and books and stuffed animals for the kids. Mind you, we are talking about a 2.5 yo that could care less about unwrapping things and hates stuffed animals, he was happy to sit by the fire and hang out with us, and an 8mo who has no idea what's up with "stuff". But back to Amber who has the best idea for over-indulging grandparents:

Grandparents still spoil- but this year especially we’ve asked them for cold weather clothes that the girls need- or passes to the zoo or the children’s museum. We don’t need more stuff that could be recalled in a month.

THAT last sentence would get my mother-in-law's attention. And the fact that these are activities where the kids would get out would grab my mom's attention. Finally, a solution that should work. At least if I can get up the guts to tell them that for anything that comes into the house something else has to go out AND make them understand that the something that goes out might be something from them that still fits or functions just fine.

Toys: Plastic vs. Wood

So with all the bazillion recalls lately toys have really been on my mind. I get the whole "wood is better" just like I get that I should be bringing my own cloth bags to the grocery store (I do, just not every stinkin' time). I started leaning toward plastic that doesn't have any paint that can be chewed off a long time ago. Then the recalls on toys that had too much lead in their paint started. Go check out the CPSC's search page and see how many you get for "lead paint" -- I found 60 when I limited the search to "in the last week"!!! That's insane.

So, despite all the "ooh, wood toys are better" I felt that if a spit-wet toy could leave paint marks on things (for awhile everything was a drum/drumstick), then that paint was also getting into The Biscuit. He's got enough problems, I'm not going to add some bizarre paint poisoning to the list. So plastic seemed nice and safe, paint-wise.

Then I was reading this post on Kerflop and a commenter mentioned off-gassing plastics. Well, crap. The kids are surrounded by off-gassing plastics now. What's that doing to them long-term?

What do you do? Where do you fall in this debate? I'd really like to know. I don't want everything to be rubbed with bees' wax just to be safe. Kids need color in their world.

Flickr contacts

I think I finally figured out how to use Flickr to keep my kids' photos away from the prying eyes of pedophiles and yet share them with people who are my blogging friends. I just need to make you Flickr contacts and then mark you as friends. So if you have a Flickr account, would like to see the photos of my kiddos, and are not freaky, then drop a comment here or send me an email with your Flickr screen name. Alternately, if you are way more with it than me, go over to Flickr and make me your contact already and I'll reciprocate. Either way!

Some random person I've never heard from before is not going to be made my contact though. So don't bother. :-P

B

I found out when reading The Big Trade-off today that her mom is hosting Alphabet Soup and today's letter is B.

Here's my list:

• First my babies: The Biscuit and his Baby sister and My Bakery's Daddy as he is now calling himself. I can't love them without adding to my love for him, so he has to be included. ;-)


• Obviously blogs. Lots of them, not just mine. I've got to figure out a way to read and write everyday because it makes me feel so much better.


• Breastfeeding. It is the most Zen part of my day. I have a reason to just sit still and be in the moment and I love that.


• Binkies. Technically it's a Avent pacifier, but we still call it a binky. I didn't think I would be a binky-loving momma, but since The Cupcake will eat past when she is full and then spit it all back up I had to find something to satisfy her that wouldn't over-fill her tummy. I swear we are taking it away when she's 4 months old like Baby 411 says we should. She already refuses it sometimes in favor of her hand, thank goodness. Still, it would have been hard to get through these 3 months without it.


• Big Timber, Montana. It's the tiny town my grandparents were from and where they are buried. I can't imagine going up there without stopping in Big Timber for a bit. There's a lovely florist on McLeod Street called The Toggery where we go to get flowers to take to the cemetery. I also stop in to Little Timber Quilts just a few doors down. I'm a sucker for red, white and blue fabrics and last time they had ones that I hadn't seen here in Northern California.

That's enough, don't you think?

Poop is a tool

I haven't had anything much to say for 10 days, but now I do.

I started reading Sweet Salty awhile back and her post today about a conversation with a high school friend that hasn't had kids was (as they always are) excellent.

I often feel awkward with people who don't have kids now. Just as awkward as I used to feel with people that did have them. I *do* find poop talk fascinating and don't mind it during a meal or whenever. I have disassociated from its disgustingness and now see it as a serious diagnostic tool and must learn from others what they have noticed in order to improve my diagnostic skills. It's serious business, this poop stuff.

And, yes, one of the blogs I read every-stinking-day is The Shape of a Mother, because there is no other site that has single-handedly made me feel better about the way I look. Can anyone who hasn't had a child (and I include adoptive mothers here) or been pregnant really understand what a boon this site is? Probably not. It's one of those things that you can't get until you've been there. Might it be an absolutely hellish site for women who want babies but are having trouble conceiving? Yes. Because it is so brutally honest and open and there are so many of us with scars and stretch marks and bad body image, yet who are trying to come to terms with how these things that make us feel ugly happened during the most beautiful and amazing events we've lived through. But it's not hellish to those who are not ready yet or have decided to be child-free; it's probably just silly and they think we should get to the gym already.

Kate's post today talked about how those people aren't living life. They think they are but they have chickened out on the biggest challenge there is. She says it so much better than I could. Here's a taste:

You think you’re living, really living, revelling in a life that’s all about you. Sure, you’re living my momentary fantasy: perky tits and sleeping in and jogging and international travel and sharp-edged coffee tables.

But you’re still a bunch of pussies.

Go read the whole post. This is the third link to it I've given you. And then think about whether climbing Mt. Everest is really such a feat after all. I'm thinking that compared to your 3rd almost-a-week stay in your son's hospital room before his 2nd birthday, Everest pales in comparison. Not that my husband and I should be praised in the media for what we've lived through, but my curiosity about what mountain climbing and bungee jumping and lots of other things would be like has dimmed to a mild, occasional wondering now.

And maybe all those people living adventurous lives full of travel and wine don't have it so great.

I Wish I Had Known...

The Shape of a Mother celebrated its one year anniversary with this post.

Numbers 137 through 141 are mine, edited as she says at the beginning, but pretty much just like I sent them in. Like everyone else, many of the others could have been mine. I just didn't want to forget how I feel now and thought this would help me remember.