Zip - Perdue - Dee - Dah

kira speak

2011-11-18T21:17:00.000-08:00

just remembered this and don't want to lose it forever.

Kira's speech path came up to me in the hall while I was doing PTA stuff and said, "I have to ask this. Do you play the tuba?"

Me: um...no.

SLP: Well, Kira swears that you do. We were reading a book that had a character playing a tuba, so I asked if anyone knew someone who played the tuba. Kira said, "Mommy!" And I said, "Your mom plays the tuba!?! Really?" And Kira said, "Really." with a smug little smile and subtle nod of her head.

(I cannot do this justice in print, but I know the exact look the SLP was referring to. And I know that Kira knows that I do not play the tuba. I also know that a certain little girl likes a little extra attention during her group speech sessions.)

jacksonism and kira speak

2011-07-08T11:24:00.000-07:00

Jackson: Mom! I had the strangest dream last night. There was this INSANE toy store where they said they only had toys never seen before. Only I HAD seen them before and so had Hansel and Gretel. At least, there was a brother and sister there. They might not have been Hansel and Gretel. I don't know. I didn't ask.

Kira (at bedtime): Knock Knock
Me: Who's there?
K: sleep
Me: sleep who?
K: sleep night night

Heading to the car in the Target parking lot on a 102 degree Tx afternoon:
Me: I'm hot
Kira: Me, too
Me: I'm tired
Kira: Me, too
Me: I'm hungry
Kira: Me, too
Me: My toots smell like a rose garden.
Kira: mmmmmmmmm

Just this second:
Kids bickering behind me:
Me: Do y'all need to be separated?
Kira: Yes.

Hello!

2010-12-10T13:01:00.000-08:00

um...perhaps you've noticed that I haven't been blogging much. I'm not really starting back up right this second, but wanted to pass on some info:

If you sign up here, you'll get a coupon for a free appetizer at Chili's and help my dear friend, Teri, to win a contest at work. Thank you!

Back to blogging after the holidays, hopefully.

P.S. Please say a prayer, send good energy, think good thoughts for my sweet boy who has the flu. Thank you.

The Funk

2010-10-25T07:16:00.000-07:00

You know how when you're a mom, you think you'll just power through whatever illness your body is fighting because you don't have time to rest? Yeah, sometimes you should rest.

I've been dealing with The Funk since last Tuesday. I did the PTA Pumpkin Patch fundraiser for Kira's school all day on Wednesday (We made $415!) and then went out on Wednesday night (Sound of Music singalong!) and stayed up way too late. Overdid it.

Felt like hammered poop for the rest of the week, but thought that I'd be able to do the garage sale Kam and I had planned for Sunday at her house. I was wrong.

If you have to convalesce, however, I highly recommend Kam and Teri's house.

Services include:
Hot toddies
Teri guarding the door so that your children MUST let you sleep for a two hour nap (bliss!)
Comfort food prepared by a professional chef - chicken with champagne cream sauce, spaghetti squash and quinoa. Yum.
Fabulous conversation and cute kids running around being cute

So, I'm pretty sure I've now moved on to sinus/ear infection and I'm heading to the doctor this afternoon. Hopefully with some antibiotics in my system, I'll be able to help make ghost pops for our next PTA thing, tomorrow. At this point, I'd just be passing on the plague, so I had to flake out for today.

Thank you Kam and Teri for taking such good care of me this weekend! And thank you Michelle for a fun movie night and for listening to me croak along to "doe a deer". And thank you Jane and Cary for making all day Pumpkin Patching so much fun.

And now I'm crawling back into bed until I have to crawl back out to pick Kira up from school.

Take your vitamins, y'all. Love, W.

made

2010-10-18T07:33:00.000-07:00

I'm sorry I'm sucking so bad at the daily posting thing.

Crafting is kicking in to full gear around here. I finished up two skull caps for two cute little heads. I'll get those in the mail Friday. They are both for the cutie siblings of cuties sporting designer genes. Their mamas are friends I would have never "met" without Kira. Funny how big your world grows.

The scarf is for Derek's uncle. I promised it to him last year and finally finished it. I have three more promised projects I want to finish up in the next couple of weeks (Yes Poppy, your scarf).

Here's my stylist, Lulu:

Isn't she pretty?

I also made this hat for Derek's dad for his birthday. I didn't get a picture of it, though. Derek, of course, wants one, too.

Next up:

15 bean bags for the Pumpkin Patch PTA fundraiser at Kira's school

1 Devil costume

1 Devilishly cute princess costume

2 phoning it in Devil horns and Devil tails for the parents who don't want to dress up for the party

Michelle wrote a beautiful post about how all kids have special needs and all parents are just doing their best to parent their unique kids - check it out. I loved it.

Off to sew bean bags. Hope your day is lovely!

Little Punkins!

2010-10-14T06:58:00.000-07:00

Jackson and Kira went to After Dark in the Park with their Aunties Beeka and Karen. I had to share this pic Beeka took!

(That police officer in the background is Aunt Karen.)

Thank you Beeka and Karen for always entertaining our Perdueligans in such fine fashion!

The Great State Fair of Texas - T21 edition

2010-10-10T11:02:00.001-07:00

Last year, we didn't see one single person with bonus chromos at the State Fair. This year, we saw three!!! AND in the food and fiber pavilion one of the poster models was a young adult with Down syndrome!!

And we ate Fried Frito Pie!

Pics later when I steal them from my FIL.

(and yes, I know I'm behind again. But, I've already blogged more than I have in the past four months, so I'm calling this a success.)

NPR DFW part 2 Karma

2010-10-07T12:06:00.000-07:00

So, I kind of jokingly posted today asking for donations for our local NPR station to end the everlasting pledge drive. Kind of a cop out 31 for 21 post, because I didn't really have much to say/time to say it, today.

And two hours later on my local NPR station, the show Think featured Alexandra Codina, the filmmaker of Monica and David.

It was a great interview. Too short, because it was on during the pledge drive, but very respectfully done.

The part that really stuck with me was Codina's point that she felt that Monica and David weren't limited by their disability so much as limited by everyone else's perception of their disablity. So true, I think.

There is a special screening of Monica and David, tonight in Dallas. I wish I could go! Dang PTA.

I can't end without saying that I cried most of the way through the show. When I hear anything about life with Down syndrome presented in such an open, accepting way, it just gets me. I think we are so lucky to be living in a time when so many doors are opening. Sure, some of them are open just a crack, and we have to shove them open with everything we have, but there ARE openings.

Windows and doors and slivers of light that make my daughter's future so much brighter.

I'll post a link to the podcast as soon as it's up. And p.s., I'm now caught back up with the number of posts I need for 31 for 21! (We'll see how long that lasts.)

Hug your babies.

Love, W.

NPR DFW

2010-10-07T09:34:00.000-07:00

If you're in the DFW area, or even if you're not, please go to KERA or call 1-888-694-6931 and make a donation. Lord have mercy, I cannot take another day of this pledge drive. Thanks.

thoughts

2010-10-06T07:31:00.000-07:00

Thanks y'all for all of the sweet comments on yesterday's post. Cate said that she wished she had a time machine to go back and hug us and let us know how things were going to turn out. All of us, all the new mamas.

I wish I could do that for the new mamas that are finding out right now. The ones getting shocked at birth. The ones getting unexpected test results. I wish I could tell them that it's going to be fine. Your child will rock. Your family will stretch and grow. Your world will get bigger and better in ways you never imagined. It won't be easy, but it will be good.

But, I think that it's a road you just have to travel for yourself. You have to be the one thinking: "Well, I'll just have the superstar kid with Down syndrome." "We'll get all the therapies! She'll be fine!"

And then realizing that your child rocks because they just do. Not because of when they hit milestones, or when they speak, or when they potty train. Not because of how closely they mirror their "typical" counterparts. Just because they ARE.

I think part of my guilt around Kira's birth centers on the fact that I totally discounted a huge chunk of society. And I didn't even know I was doing it. I just didn't see kids with different abilities, I mean really see them. Sure I thought, "I don't think I could handle that" and "those are some really awesome parents" when I saw kids who obviously had challenges. But I didn't see the value in the kids, themselves.

Now, when I tell a mom of a newborn baby with Ds, "Congratulations!" I mean it. Because that's a new life right there. Full of possibilities. Full of promise. A whole new journey.

And for the mama? It's not a detour. It's not a roadblock. It's a wider path. And when you're ready, and you look around, it's full of amazing people walking it with you.

And it rocks. Thank y'all.

The bubble

2010-10-05T07:00:00.000-07:00

I don't know if I'll ever write down Kira's birth story. That was a tough 24 hours. I don't like to think about it, although I often do. Her birthday is always bittersweet for me. It gets easier every year, thankfully.

What I do want to write down is a remembrance of the 4 days after her birth. Kira was jaundiced and had a tough time keeping her temperature up at first. She had to stay in the hospital for those first few days. We were lucky that, at the time, my mom worked at the hospital. We were able to use a hospital room all day with Kira and it was such a gift.

My mom would get to the hospital really early to hold Kira. She would call me and say, "This girl is hungry! Are you on your way?" I'd be in the car, or in the parking lot, or running into the hospital. Kira and I would struggle through nursing for a bit, then I'd pump to get like an ounce or two of milk for a bottle feeding.

Derek and Jackson would arrive shortly thereafter and Mom would head home for some rest. We'd spend the day holding Kira under the light, trying to breastfeed, pumping, and seeing friends and family who would come to see Kira, entertain Jackson, and feed us.

Jackson would fall asleep for a nap on the hospital bed at some point. We'd all stay until late, then head home for the night. We'd do the whole thing again the next day.

I am so thankful for that time. It was like we were all safely tucked inside a bubble, figuring out who our little family was now. It gave me time to get used to the new reality. It gave me time to realize that, more than anything, I just wanted to take my baby girl home. I didn't care about Down syndrome. I just wanted her to be healthy and home.

The nurses at the hospital were so awesome. They took such good care of us. I never thanked them properly, and I feel bad about that.

I don't think my Mom knows how much those days meant to me, either. That little bubble of time was a precious gift. Mom, it's the best present you've ever given me. Thank you.

Big Kids

2010-10-04T06:45:00.000-07:00

Yesterday got away from me before I blogged. I guess it'll be 30 for 21 for me.

We've had a crazy week around here. After a healthy summer, the kids, of course, managed to come down with a nasty virus three weeks into school starting. Jackson started running fever last Saturday. Kira started on Monday. I took them both to the doctor for strep tests. Not strep.

On Wednesday night, Jackson was still running fever and it got up to 104.4. So, back to the dr we headed on Thursday. Not mono. Not flu. Headed to the children's hospital for xrays. Not pneumonia.

On Thursday, Jackson's fever broke. I've found that his illnesses require a sacrifice of expensive medical testing before they'll go.

Kira ran fever for over five days, too. Though she never ran that high. It's funny because people assume that she's our medically fragile one. I always mention that she started crawling a week and a half after heart surgery. She's a tough chick.

And speaking of her heart surgery...we got the all clear from her cardiologist last month!! She only needs to see Kira on an "as needed" basis from now on!! Kira was born with a PDA and an ASD. Her cardiologist attempted to close the PDA with a device that essentially plugs it up, but Kira's was ginourmous and the device pulled right through it. So, on Feb 14, 2008, she had surgery to close it. They went in through her side and deflated her lung to get to it.

We thought she would just have to live with the ASD, luckily it was small. But when she had her echo done last month, there was no sign of the ASD!! Woo-hoo!!

I am so thankful that we have Cook Children's Hospital. My kids feel right at home there, and I'm thankful. I know that's kind of a weird thing to be thankful for, but when Jackson has needed to go in for xrays or whatever, he's not scared. He loves going there. Kira is understandably not thrilled to go for blood draws, but she isn't scared of the hospital. And y'all, she was SUCH a big girl during her testing last month. Sat up straight and tall during the EKG, kept it together, even though she wasn't entirely sure what was coming next. Tough chick.

We always eat lunch in the cafeteria when we're there. Last time, I looked down and realized that no one was in a stroller. They were both sticking close to me while we waited for our food. They stayed in line with me. We walked to our table together. They entertained one another while I went to get napkins and straws and stuff. I had to take a sec and recognize that here we were in the next stage, together. Two big kids and their mom enjoying lunch. They're still my babies, though.

Hug your babies, y'all!

Love, W.

P.S. While I was looking for a pic to put in this post, I remembered something else I wanted to say. When Kira started saying "Mama", I wasn't sure if she was really saying it, or just practicing her "muh" sound. After the failed attempt to plug the PDA, when they brought her too me right after she came out from under anesthesia, she snuggled into my arms, looked me straight in the eye, and breathed "Mama" with a sigh of relief. It was perfect.

The Twins

2010-10-02T06:12:00.000-07:00

Of her many, many baby dolls, Kira has two in particular that she loves. They've had hard lives. They never have clothes on. One is covered in pen marks. But, they are loved, loved, loved.

I often find them nestled into giant pull-ups on my bed. Or tucked gently into Kira's bed.

The other day, I went to use the computer and found them again. It looked like they were all tuckered out after watching something on Netflix.

I love finding evidence of pretend play that was going on while I was busy somewhere else. I love that she thought to give them a pillow and that she went to the linen closet to get them each a washcloth blanket. I love that she's such a good mama. My biggest wish is that, if she wants it to be, mothering will somehow be in her future. Sky's the limit.

aaaaaaaaaannnnddd we're back! (31 for 21)

2010-10-01T09:00:00.000-07:00

Grab This Button

31 for 21, y'all. 31 posts in 31 days in honor of my girl's 21st chromosome. And a great chance for a lazy blogger to get her mojo working again.

So, let's see. Where were we?

Kids are in school. Kira for a 1/2 day and Jackson in all day Kindergarten. Jackson had a bit of a rough start, but now absolutely adores school. Adores it in a way that is sure to get his ass kicked at some point in the future. Bless him.

Kira returned to school like the princess she is. Beauty queen waving like she was on the back of a convertible all the way down the hall.

I'm in full on PTA mode. PTA doesn't play, y'all. Serious business.

ummm....what else? Oh, we have a cat. Her name is Lulu. She rocks. She'll get her own post or two this month.

I'll leave you with first day of school pics. And a promise to do my best to blog every day. And maybe even talk about Down syndrome.

Missed y'all.

Love, W.

(Jackson showing "5" and helping Kira show "3", so I'll remember when this was!)

jacksonism

2010-09-17T06:57:00.001-07:00

I don't want to forget this one.

Jackson decided that he wanted to take his lunch to school on Thursday. He, of course, decided this on Wednesday, so I wasn't sure what I'd have to put in his lunch.

Me: Ok, it's all packed! You have a peanut butter and jelly sandwich, cantaloupe, watermelon, carrots and celery. So, you're good to go!

Jackson: Actually Mom, I'd like to be GREAT to go. Could you put some peaches in there, too?

Happy Friday, y'all!

2010-07-23T06:16:00.000-07:00

Having a busy (and fun!) summer - back to regular blogging soon. Promise. I had to share this song, though. LOVE it.

wordless wednesday - me and my girl

2010-06-16T06:00:00.000-07:00

(way blurry, but look at her sweet face!)

jacksonism

2010-06-08T15:20:00.000-07:00

J: Mom! Pick a number between a million and one hundred and two!

me: 3,175?

J: Nope! Try again!

kira speak

2010-06-03T07:59:00.000-07:00

Yesterday, the kids were playing in the backyard. Jackson came inside, so I went outside to get Kira. I told her that she needed to come in because it was getting too hot. She wrapped her arms around herself, started shivering, and said, "ooooh....COLD!!".

Saying it doesn't make it so, babe. Get in the house!

ready for summer. thinking about Christmas.

2010-05-26T07:02:00.000-07:00

Yep. You read that right. I'm ready for summer and thinking about Christmas.

I spent yesterday printing out all of the calendars for all of the free/cheap summer stuff going on around here. It's amazing how many really cool things there are to do. We're lucky to have a Levitt Pavilion that offers free concerts from now through July 3. There are several free/cheap movie festivals going on. And, of course, all of the Summer Reading Club events at the library.

So, I've gathered all of the info up into a Summer 2010 folder. I went ahead and put all of the regular weekly offerings together onto a weekly planner page, so I'll know what our options are each week, in addition to whatever special stuff is going on. I'm so excited!

Now for the Christmas part. I'm going for a mainly handmade Christmas again this year. I'm scouting the yard sales and thrift stores for crafting supplies and bookmarking tutorial links like a madwoman.

Anyone up for doing a Handmade Christmas with me this year? (Carrie!)

Also Christmas related during the summer:

-Target does a big toy clearance (think 75% off) usually at the end of July/first of August. You'll see them start to gather all the clearance toys onto one or two aisles. They'll do their usual 30%, then 50% off first. If you can catch the 75% off it's a great time to start your Christmas shopping or to stock up on toys for last minute birthday party gifts.

-Back to school sales on school supplies start Julyish, too. It is hands down the best time of year to stock up on art supplies. You can't beat .25 scissors and crayons, and paper, glue, folders, etc for even cheaper. I like to stock up on all of it for craft supplies for my kids and for gifts/party favors for the whole year.

Thank you for joining me for a Random Minute in Wendy's Brain. That's all I got. Hug your babies.

made

2010-05-23T16:38:00.000-07:00

A little bit of crafting this week.

I experimented with sewing with knits this week. I read somewhere (Angry Chicken, maybe?) that if you're going to sew knits, get a ballpoint needle for your machine. It really did make a huge difference. The last time I tried sewing knits was a disaster!

So, this week I started with some of Kira's too short gymboree leggings. I cut them off to just above her knee and used a zigzag stitch around the bottom edge while stretching the material. It makes a flutter edge that's really cute. No pics - I made three pair and they are all currently in the dirty clothes pile. I'll try to get a pic up of her wearing them, later. They make me think of a 1920's bathing suit bottom.

Next up was my attempt at this wonderful tutorial for making boys' boxer briefs out of tshirts. I've really been wanting to try this. Jackson HATES it when he outgrows favorite t's, so this is a great way to make 'em last a little bit longer. They turned out so cute and they actually fit around his skinny legs!

This picture in no way shows how cute they are on. I actually made three pairs. Jackson is currently wearing Pair #3 and since I'm trying very hard to avoid posting things now that will embarrass him later, I'll refrain from posting a pic. Believe me, though, way cute.

We were invited to a birthday party this weekend that we weren't able to attend. It was for a little boy who goes to Kira's school, though he's not in her class. I was trying to come up with a gift using stuff I already have on hand and am pretty happy with the final gift. I made a tic-tac-toe board with a pocket on the reverse side that holds the checkers. I used the pocket piece off of one of Derek's old shirts for the back. I used shirt scraps and khaki scraps for the squares. I sewed a piece of velcro into the pocket to hold it shut (I did that before sewing the whole thing together). Anywho, here you go:

Front:

Back:

Pocket:

I also did a real quick recon on a pair of XL pajama pants I bought at a garage sale for a quarter. I took in the sides, cut off the top, and added a new elastic waistband - and presto! Medium jammie bottoms for me. I'll spare you a pic of me modeling them.

A Jackson funny: He was playing guitar and asked me if I'd find him a straw hat. He said, "I need it to help me write a country song about a tumbleweed named Herb."

That's all I got. Hope your weekend was lovely!

who knew?

2010-05-19T18:59:00.000-07:00

Turns out that despite being marketed as a "lullaby" the "sing along opera" of made up superhero names in alphabetical order will, in fact, WAKE UP a certain grouchy girl who really, really, really needed the sleep.

huh.

(And for the record: No. I do not want to play another round of "Guess what I'm saying in secret code".)

we're dang fancy, y'all

2010-05-18T13:07:00.000-07:00

Derek rigged up a makeshift swing for the kids. Garden hose, two holes drilled in a piece of wood, and some kind of metal thingy securing it around the pine tree.

I wish I could swing on it. It goes all crazy in huge, swirly circles. The kids LOVE it. (And I'm a worrier, so believe me, it's very safe and secure.)

Jackson - a couple of weeks ago:

J & K - today:

inexpensive teacher's gift idea

2010-05-17T07:25:00.000-07:00

I made these little bouquets for Kira's teachers and speech path for Teacher Appreciation Week.

I think I'm going to do the same thing for Jackson's Zoo School teachers for the last day of school.

2 bouquets from Aldi's @ 3.99 ea - 7.98
3 coffee mugs from Salvation Army - 2.50 total (If I'd of been thinking ahead, I could of garage sale'd these for WAY less than that.)
1 large block of floral foam - $1.50 after 40% off coupon at Joann's

$11.98 for 3 gifts - not bad!

made

2010-05-16T08:11:00.000-07:00

This week's tally:

1 tutu

1 superhero cape

1 pair of scrappy clown pants

1 scrappy twirly clown skirt

1 teeny-tiny amigurumi yoda

Today is devoted to repairing the destruction of my house that occurred during all that crafting!

The clown pants and skirt were for the kids to wear to Vin's 2nd bday party, yesterday. I had the honor of attending my very first late night girls' sewing bee to help Kam sew the clown vests that each child received for a party favor. We had the best time sewing, chatting, and drinking margaritas (it was cinco de mayo after all). Derek had the next morning off, so my Mother's Day gift was getting to spend the night after the sewing bee and have a leisurely morning enjoying Teri's breakfast burritos and coffee before heading home. Sew lovely, I tell ya.

I took the leftover scraps from the vest making and made Jackson's pants and Kira's twirly skirt. Pretty dang cute and perfect for some clownin' around:

Yoda was a gift for my BIL. He said he either wanted Derek to make him a batch of pale ale or me to make him one of these. I've been wanting to try amigurumi, but have been kind of intimidated. So, I was happy to have the chance to try it. I didn't use doll eyes, but instead stitched embroidery floss for the eyes. I was going to harvest eyes from one of the kids' million stuffed animals. Those things are so anthropomorphic that I couldn't bring myself to cut into them! So, here's cutie little 2.5" Yoda:

And here's what Derek's IOU pale ale card looked like:

The best part of this crafting week was my kids showing me how much they pay attention to things. Vin's gifts were the superhero cape and the tutu (real men can rock a tutu. trust.).

I had the tulle spread across my bed while making the tutu. Kira walked in, took a look at the bed, and said, "tutu?". Yep, mommy's making another tutu. Cutie girl.

When I told Jackson that we had to run to Joann's to buy fabric for the cape, he said, "Don't forget to get the velcro.". And when I was cutting out the pattern pieces, he gave me a huge hug and said, "You're the best present maker ever! Anyone can buy a gift, but you like Vin enough to make him one!". I know someday Momma-made will probably embarrass him, but it's so lovely to know that he gets it, now.

Have a good weekend, y'all!

kira speak

2010-05-14T06:29:00.000-07:00

some cute vocab I don't want to forget:

"oo turn, Mommy!" - your turn, Mommy. I LOVE this.

"uh oo" - Love you. At first, she said this in answer to us saying "I love you." Now, she'll tell us out of the blue. I'm so thankful.

empty - amazing how many ways she uses "empty" to get her meaning across.

"puler" - computer.

"rah-rahtz" - which is Yo Gabba Gabba. I think it has something to do with "robot". Anyway, rah-rahtz is her fave.

minnow - we have the book Would you rather be a bullfrog? and one of the questions is "Would you rather be a minnow or a whale?". One day, Kira shouted out, "MINNOW!" and it cracked us up. She loved the reaction, apparently, because she now likes to randomly shout it out. She also really likes to add it on when Jackson asks her to say something. Like, "Kira, say Daddy" - "MINNOW DADDY!" She thinks she's huh-larious.

"dat" "dere" "dis" - that, there, this. She uses these to drive me batshit crazy. Great that she knows them. Not so great when I have no idea what she's talking about.

"beh-dy?" - ready? She asks me this right before she does something that she thinks is awesome, like jumping, or dancing, or singing.

"morning!" - she says this about 152 times as she greets everyone walking down the hall to her classroom.

"doh-durt" - yogurt. Absolutely her favorite food.

"duh-ders" - crackers. Sounds almost exactly like doh-durt. She knows the sign for cracker, though, so that's how we figure it out.

And a story:
We were leaving the Dr's office when I realized that I locked my keys in the car. We had to call Derek to come rescue us (how he got to spend his lunch break on his birthday). So, Jackson, Kira, and I were waiting in the Dr's waiting room.

Kira: Mommy. rah-ratz puler? (Mommy, can we watch Yo Gabba Gabba on the computer?)
Me: No, baby. There's no computer here.
Kira (pointing to the TV): dere?
Me: No, baby. I'm sorry. We can't watch it there.
She thought for a sec and then her eyes lit up and she said: Mommy! Come on. Car. Home. Rah-rahtz puler.

Cracked me up! She was like, "I've totally got this figured out. We don't have to sit here. We can just get in the car, go home, and watch it there. Silly Mommy."

I don't know if I'd call her vocabulary approximations or not. I have to translate most of what she says, but sounds are getting clearer. Like "bed-dy" for ready was "belly" until very recently. She'll be having tubes put in and her tonsils (and maybe adenoids) removed soon, so it will be interesting to see how all of that plays into her language/speech. We still use lots of sign language, and she constantly has me asking her teacher what this or that new sign she's using is.

Sometimes she'll really surprise me with how she's able to communicate her thought processes to me, like with the Yo Gabba Gabba puler story.

The other day, I was getting her a drink while I was holding her. I put the lid on the cup and said, "Now what do we need?" and she said, "Straw." I need to remember to ask things like that more often. To give her the chance to show me what she knows.

I'm also starting to get little bits of communication that show me that she understands past/present/future. The other day, Jackson was off for a day of fun with his Beeka. I treated Kira and I to pizza for lunch. When Derek got home that evening, I said, "Daddy, Kira and I went to lunch today." and she said "Pizza" without any prompting. That was very cool. Jackson and I were able to talk about his day, etc, so very early. It's one of the things that I'm so ready for with Kira. We're getting there.

sibs

2010-05-13T07:50:00.000-07:00

I've had these pics trapped in my camera for about two months, I think. The kids were outside playing and Jackson was trying to teach Kira how to ride the tricycle. I was able to get some shots without them seeing me, a little blurry with all of the trying to hide while doing it. Such a sweet moment between them. And at 5 and 3, it's nice to catch a sweet moment between the squabbles!

A note on the "outfits": This was one of those days when they steadily added to their jammies all morning. Stuff from the dress-up box? check. Random shoes pulled from the closet? check. Hand-me-downs from Bubba? check. Shirt on backwards? check. (And Jackson has had a major haircut since then, too.)

Just makes my heart fill up and pour out all over.

Wordless Wednesday - Springtime in Texas

2010-05-12T05:56:00.000-07:00

it doesn't take much, y'all

2010-04-02T06:09:00.001-07:00

Derek home roasts our coffee, so according to him, it must be made one cup at a time. I usually have my first cup immediately after rolling out of bed, stumbling bleary-eyed to the kitchen, and putting the kettle on. I'm standing there waiting for the water to boil the whole time.

But, my second cup usually comes a little bit later. I put the kettle on, run to switch the clothes out from the washer to the dryer, get sidetracked while folding the clothes from the dryer, go wipe someone's hiney, remember that I was going to do xyz, wonder who the hell moved my scissors (me)....And then, from the kitchen, I hear the wonderful whistle of the kettle, and get a little thrill...OH YES!!! I'M GOING TO HAVE COFFEE!!!

I may have been a dog in a past life.

wip wednesday

2010-03-10T06:48:00.000-08:00

Thought y'all might want to see a few of the silly monster puppets I made for party favors for Jackson's party.

All upcycled materials (shirts, etc) and fabric scraps from other projects. We're going to hang them up as part of the decorations, then let each kid pick one to take home at the end of the party.

Not fabulous pics, but you get the idea.

glorious day

2010-03-09T14:07:00.000-08:00

I swear I'm not anti-blogging. We've been wrapping up our winter with a celebration of fevers, snot, and ear infections. I promise you that I feed my kids a well-balanced diet chock full of vitamins and organic yumminess. They get sunshine (although limited this freaky winter) and fresh air. I can't get them well long enough to stay well!!!

MOVING ON. Today was absolutely gorgeous. gorgeous. gorgeous. gorgeous! Blue skies, light breeze, temperature in the 70s, lovely.

We went to the park for the first time in forever and soaked up the sun with lots of other cabin fever refugees. I met another mom who happily talked Down syndrome with me. Her best friend's sister is a 27 year old young woman with Down syndrome living independently with a little support in her own apartment with her own job. It was lovely to hear. (And really, that's what I want for both of my kids. Live independently. Be happy. Everything else is gravy.)

Other stuff going on:

-Kira has let me fix her hair for school three days in a row. That's big, y'all. Ponytails, pigtails, braids - and all have made it through the school day relatively intact.

-Kira actually peed in the potty last night. We sit on it ad nauseum, but last night she actually went. woo to the hoo, y'all. I think we're going to go hard core nekkid potty training bootcamp during spring break.

-We had to postpone Jackson's bday party due to the aforementioned fever snotty funtime, so we're looking forward to our re-scheduled event. Theme: silly monsters. It was too late to cancel the cake for the cancelled party, so I have 3 lbs of silly monster cake added to my butt. Red velvet cake in the fridge is a siren's call I cannot resist.

-I am the mother of a five year old. Not possible.

-Kira woke up this morning and called me "Wendy" for the first 10 minutes she was up. I revelled in the fact that she gets that I'm "Mommy" and my name is "Wendy". Then I reminded her that she's not allowed to call me, "Wendy".

-School is going really well for Kira. I need to do a speech/signing update. She's learning lots of new words, which is exciting. The lovely Malea sent us a signing time dvd and Kira almost instantly began using new words and signs. I didn't realize that the dvds also feature the word written out, too. I bet they'll be useful for sight reading. Has anyone had any experience with that?

I'll leave you with a quote my grandmother sent me: Do the best you can with what you have at the time you are doing it.

And some pics from the past few weeks:

poor little sickie sicks:

Kira in her sick nest, saying "cheeeeeeeeese," but not removing her eyes from the TV:

Tough guy:

Cancelled, but cute cake:

checking in

2010-02-18T19:31:00.000-08:00

Kam got onto me for not blogging. So, a quick check-in. We spent the weekend hanging out with this little lovely and her parents:

Oh, yes, that IS the legendary Playette. She and her parents came to Texas and we got to hang out with them for THREE whole days. It was awesome. More later.

Love you. Miss you. Mean it.

Wendy

P.S. My son is almost five. Five. When did that happen?

where does he get this stuff?

2010-02-04T18:35:00.000-08:00

Tonight, Derek is wearing a plaid flannel shirt, blue jeans, and a knit cap. And here's the convo:

Jackson: Dad, you look like a wood chopper.

Derek: What's wrong with that?

Jackson: Well, first off, this isn't the woods, Hot Chop.

Hello February

2010-02-01T06:59:00.000-08:00

Goodbye January. I think my kids are trying to see who can hit our deductible first.

Last week:

Kira - woke up at 3:30 am on Tuesday sounding like she was gasping for breath. Her lips were pink. She was sucking her thumb, but her breathing sounded horrible. Diagnosis: croup and another ear infection.

Jackson - On Friday morning, he started running a fever. By 3:00 that afternoon, his fever was at 105.1. We headed to the children's hospital ER to pick up our pneumonia diagnosis.

I think the funky virus I had a few days before Kira got sick manifested itself in a variety of ways. Derek's had a cough, too. We all seem to be on the mend, thankfully.

A semi-related kind of gross funny: I keep having to apologize to Derek for accidentally getting snot on him when I kiss him. He said, "That's ok. I've just started thinking of you as my little snail of love."

why not Wednesday

2010-01-27T07:21:00.000-08:00

Jackson's first words upon waking this morning:

Hey, I have some dance moves and food raps to lay on you guys.

Followed by a performance featuring the carrot rap that was all about a carrot that was too cold and so needed

to get BACK inside the
BACK inside the
BACK inside the
ground

(Obviously, his muse visits him in his sleep.)

Kira in action!

2010-01-25T12:42:00.000-08:00

We spent a good chunk of time this afternoon soaking in some sun before the weather turns cold again. I was watching the kids running and playing when I suddenly realized, "Wait a minute! Kira is climbing up the slide! And sliding down! On her bottom!"

She loves to slide, but has always needed a little help with the ladder and has always slid down on her belly. And there she was, acting like she's been doing it this way forever. She would slide right down and land with a thud on her butt. I wanted to catch it on video.

So, I started filming and then she landed on her feet!! For the very first time!! I think we were both surprised and I love, love, love the look of surprise and pride on her little face.

Jackson said, "Mom! We should have a celebration, tonight! To celebrate Kira being such a big girl!" Most definitely.

trying to be a better human and a disclaimer

2010-01-21T15:20:00.001-08:00

So, one of my New Year's Resolutions is to try to be a better human. First up - if I don't bring my own bags, it's either paper or me carting it all out unbagged. I'm doing pretty good with this one, so far. I'm ok with the paper bags because the kids and I use them for painting, etc.

I'm also trying to creatively repurpose stuff we already have instead of buying new. That one goes hand in hand with my Out of Debt Before Christmas 2010 Resolution. We're over halfway there already! And yes, that one means you'll have to look at project pics.

And now for the disclaimer. I hate doing the dishes. And my hands are always cold. So, I run hot water while I do the dishes. I know. It's not efficient. It wastes energy and money. BUT my hands are warm and the dishes are done, man. (10 pts if you can name that movie.)

Baby steps.

Love, Wendy

P.S. A big ol' AMEN for jobs secured for my Mom and for Dave, husband to my DR buddy and all around lovely person Mary Ellen.

Thank you

2010-01-13T10:18:00.000-08:00

A couple of weeks ago I heard a guest on NPR say something along these lines: Evil is something that happens in a second, but Good is something that must happen again and again and again.

That really stuck with me and I wanted to write a post about how that's our job as parents. To fill our kids up with as much Good as we can, so that if they are hit with Evil or even just when the plain old Bad hits, they are armed, equipped, and ready. And hopefully, they'll rarely have to use that armor of Good.

But today, something really bad happened. A police officer, here in Arlington, lost his life this morning. I don't know the exact details, but it was really a freak accident involving his motorcycle and a school bus.

And I thought about how he got up this morning and took a shower. He had breakfast, maybe with his spouse and kids, maybe not. And he walked out of his door and that was it.

And the thing is, there are so many people, every single day, who voluntarily do jobs that guarantee that they will be in direct contact with the bad stuff. Police officers, fire fighters, EMTs, the dispatchers who take the phone calls across 12 hour shifts. They do such Good and help to insulate us from the bad.

I guess I just wanted to make sure that I publicly say, "Thank you." Thank you to that police officer and his family. Thank you to all of those service workers. Thank you.

Yes, it's our job as parents to fill our kids up with Good over and over again. It's our job as people to do it for each other.

son of random

2010-01-12T11:56:00.000-08:00

Jackson: "Mom, if you go to Walgreens later, I've been needing a few things."

Me: "Like what?"

Jackson: "Well, a transformer that turns into a truck. And also, a rubber chicken."

good morning!

2010-01-11T07:23:00.001-08:00

I'm almost scared to say anything about it, but I'm happy to report a fever-free, back-to-as-normal-as-we-can-ever-get household! And, it's supposed to reach the 50s sometime today!! I know we didn't get anywhere close to the yucky cold that the rest of the country got, but I am so done with this weather. Hopefully, the kids and I can get outside for some sunshine this afternoon.

A couple of quick pics:

Kira looked like such a big girl before school this morning, I had to take her picture. It's not a great shot, but you can see her new purple frames. This is our second pair of frames from specs4us. They are made especially for kids with Down syndrome. The bridge is set lower, the glasses are a little wider, and the arms are a little shorter. Kira is slightly far-sighted and her left eye muscles are a little bit weaker than her right. She's been seeing a pediatric opthamologist since she was about 6 months old (I think).

And, of course, one of the most popular "new toys" around here has been this box:

Kids.

Hug your babies, y'all!

Love, Wendy

a little hard won advice

2010-01-08T10:56:00.000-08:00

Stop what you're doing right now and go look up the 24 hour pharmacies in your area.

That way, you'll already know where they are when your kid spikes a 104.7 temp at 11:00 pm and proceeds to immediately vomit up his dose of ibuprofen, leaving you no way of knowing if his fever is going to go down, and when the on-call nurse sends you out in the coldest night of the year to get Tylenol suppositories, you won't have to take twenty minutes to figure out where you need to go.

Better yet, just go ahead and get some of those suppositories the next time you're at a pharmacy.

Said child seems to be doing ok today. And the pedi's suggestion that Kira may have been battling a virus along with her ear infection seems to have been an accurate assumption.

(And thank you, Mom, for taking my 15 middle of the night phone calls and making the scary part of parenting a little less so.)

right now

2010-01-07T12:27:00.000-08:00

This is one of those posts that will make no sense to most, but I will smile when I re-read it later.

Right now the kiddos are supposed to be "resting". Instead I'm hearing one voice sing "Old black crow, old black crow goes..." Then two loud voices "singing" ACK, ACK, ACK, ACK.

Earlier today, I heard T. Berry Brazleton on NPR quoting a study that says that interaction between siblings may be more important for a successful adult life than parental interaction.

I think I'll let them rest their way for a little bit longer.

random

2010-01-06T10:30:00.000-08:00

Kind of in a funk today. Kira has an ear infection. Her first in over two years. I kept her home from school yesterday and today. She's doing better today, but obviously isn't 100%.

So, I'm drowning under a mountain of laundry, toys that need to be rearranged/sorted/removed from the house to make room for the new stuff, Christmas decorations that need to be put away, etc. It's cold and kind of gray today and I'd really like to just curl up with a cup of coffee and a book.

If y'all see our fairy nanny, housekeeper, and cook, could you let them know we need them stat?

Thanks.

Love, Wendy

and now back to our regularly scheduled programming

2010-01-04T08:20:00.000-08:00

Back to the routine this morning. Kira's at school and Jackson is sleeping in, so I get some blog time. Derek took the week off following Christmas and it was so lovely to have an extended holiday. I am glad to be getting back to our regular flow of things, though. (Although, if we were independently wealthy and he got to be home all the time, you'd better believe I could go with that flow!)

I've been debating if I want to do a series of handmade Christmas posts or just one marathon one. I'm going with the marathon. I didn't get pictures of quite a few things, but I do have several pics for y'all.

All in all, I'm really glad that I did a mainly handmade Christmas this year. Crocheting into the wee hours snuggled up on my couch with a beer and Craig Ferguson on the TV is WAY more pleasurable than battling the mall.

I think everyone sincerely liked their gifts and I know I thoroughly enjoyed making them all. I'm already planning for next year, so if you're on my Christmas list, start dropping hints. (And yes, Dad, I'll have your longer scarf done soon.)

Now for the pics. First up, gifts for the kids from us.

I had originally planned for Santa to handle the puppet stage, but he totally wussed out on me. Since I created it from 12:30am to 4:45am the night of the 22nd, it was most definitely from me. It's a doorway stage that you hang from a tension rod with dowels above and below the stage opening for stability. It all folds up into a storage case. The pattern is from Bend the Rules Sewing by Amy Karol. It was super easy to follow. It calls for cutting the dowels down, but I wanted our stage to be a little wider for our doorways. Of course, middle of the night sewing doesn't lead to very good math skills, so I didn't even think about making the case longer to accommodate the longer dowels. You'll notice they stick out. Big-whoopty-freakin'-do is what I say.

Front of stage:

Back of stage:

Poorly measured (but still cute) case:

For Jackson, I did a double sided game quilt - checkerboard on one side and tic tac toe on the other. I just made it up as I went along, so no pattern really. I made a simple drawstring bag to hold the folded up board and the checkers. He loves it.

Kira's baby received a mini wardrobe of crocheted and sewed things - two outfits and three flannel/velcro sided diapers. We use sposies round here, so Kira changes her baby and then proceeds to throw the diaper in the trash. I don't know how many times I've fished those suckers back out. You'll notice that Fancy Nancy is also sporting a new sweater. I was trying out a pattern for my nephew and it was a little too small.

Santa brought painted things made by the elves, in addition to art supplies, books, puzzles, games (Twister - hilarious to watch them play this!), a scooter for Jackson, and a baby highchair for Kira.

It was a wonderful Christmas morning. My parents visited in the morning, lovely in itself, but they also totally rescued us by bringing food. In all my Christmas preparations, I neglected to think about getting to the grocery store before we left for a couple of days with the in-laws. Christmas morning found us without eggs, and almost out of milk and coffee. Derek improvised some yummy pancakes and Nana and Poppy brought cheese ball, crackers, and pies, and full tummies were had all around. Crisis averted.

Some pics of other gifts:

wrap for my grandma

various scarves and hats for my parents, cousins, and niece

Derek and the kids took over making our gift for his parents (love. him.) - he made collages of the kids' artwork, handprints, and pics through the year. We had them laminated in ledger size laminate so that they could use them for placemats. I didn't get a shot of the post-laminate creations, but here's a pre-laminate collage.

Several gifts not pictured:

My niece's dress-up kit was a big hit. I ended up doing a tutu, reversible cape, and crocheted crown. She, of course, wore them all at the same time along with 8 Christmas bows and about 79 layers of the lip gloss my MIL bought her.

I crocheted a baby blanket for our nephew. I started it before I re-learned how to crochet, so the whole thing was in half-double herringbone. It. took. for. ever. But it's really thick and great for this crazy cold winter we're having.

Ok, Jackson's up, so I have to wrap this up. Have a great day, y'all!

Love, Wendy

Merry Christmas!!

2009-12-27T07:46:00.000-08:00

Merry Christmas and Happy New Year from the Perdues!

I hope your Christmas was lovely! We've had a wonderful whirlwind of activity the past couple of weeks. I only had to pull two all-nighters to get all of my gifts completed. All but two of the gifts we gave to family were handmade. Santa, of course, delivered a mix of gifts. The elves had a hard time finding online tutorials for making razor scooters and hot wheels cars.

I'm easing back into blogging this week. I'll post pics of most of my projects through the next few days. I didn't get pics of everything, as some things were finished minutes before they needed to be wrapped.

I'll be catching up on all my blog reading and the 500+ emails waiting for me - so keep an eye out for me in your comments sections! (Tara - I saw your kitchen on down--to--earth - how cool!!)

Wishing you and yours the merriest of holiday seasons

and a new year that brings all that you hope it will!

Love, Wendy

pssssstttt.....

2009-12-13T16:26:00.001-08:00

For a peek into Santa's Workshop, go here.

wip

2009-12-12T16:46:00.000-08:00

Finally, some pics of something I've made! Brandie commented on my last post that she couldn't wait 'til after Christmas to see pics of the stuff I'm making. That made me think, "Holy crap! I haven't been taking pics of the stuff I'm making and giving away!" So, forgive these hastily done shots, but this is what I gave my niece for her birthday, today.

The scarf is made with fun fur, which is decidedly not fun to crochet. It's just single crochet, no pattern. I crocheted two flowers (super easy pattern found here) and stitched them onto a hair elastic to use as a scarf closure or as a hair tie. I also crocheted more fun fur around another hair elastic and attached another flower to that. I figured she could use it as a bracelet or a hair scrunchie.

I'm really pleased with how it turned out and I think my niece really liked it, too.

I'm finishing up a wrap/shawl for grandma - I'll hopefully get pics up of it, tomorrow. Apparently, scarves are in for the 9-yo set, so instead of the bag I was originally going to make for my niece for Christmas, I'm going to do a long scarf. I'm kid free tomorrow, so Santa's workshop will be open for business. I'm planning to get the puppet stage done and paint the wooden things I bought earlier in the month. I think I might post pics on my other blog and then link to this one. Jackson sees this one all the time, so I don't dare post pics here before Christmas. I figure I only have a couple more years before that one figures the whole deal out. He already informed me that the guy at the mall wasn't the real Santa Claus. He's 4, y'all.

I'm enjoying crafting this Christmas so much! AND I learned that the crochet stitch I've been doing for years is a herringbone half double crochet stitch. Dang I'm fancy.

Don't forget to check out Lily's auction for some lovely Christmas gifts. It closes on the 15th, so plenty of time for Christmas shipping!

And one last thing, during all of this Christmas madness - kiss your kids, hug your spouse, be a good friend, life is short and aren't we lucky to have all these wonderful people who love us around us every day? Blessed, I tell ya.

crunch time

2009-12-10T17:26:00.000-08:00

Ok. 15 days. It's crunch time, y'all. Much coffee. Little sleep. That Santa is a harsh taskmaster, I tell ya.

I saw these two posts on Matsutake the other day and wanted to share them with y'all. This is so where I'm at right now.

Christmas. The holiday season is for crafters what the playoffs are for, uh, whatever sports teams have playoffs. Well, no, wait. It's like the Miss America Pageant for pageant girls, and I am putting vaseline on my teeth right now. I am not going to wake up sometime in mid-December and say, "Whoops, I didn't get anything made this year, I wasted my time relaxing with loved ones." No way! Not this year! There is no time for loved ones. There is no time for relaxing. There are Christmas crafts to be made. Break out the papier mache. It's on! I'll sleep in January. Who's with me? We'll only eat espresso and power bars. There will be no bathroom breaks. We will wear astronaut diapers (available at Michael's in the scrapbooking department). (LOVED THIS!!! Read the rest here.)

So, if you're looking for me, I'm the one with little bits of string sticking to me and the crochet blisters on my fingers.

(and I swear ima gonna get that graphic tattooed on my butt)

hello-o-o-o-o-o!

2009-12-08T04:30:00.000-08:00

Did ya miss me? I know. I've been a bad blogger. It's not that I haven't had anything to say, just no time to gather coherent thoughts!

Quick summary of recent events:

- Kira turned three! We had her birthday party on Saturday and it was lovely. We had it at home, so it was just family and close friends (of course, that's almost 40 people right there). I think she really enjoyed it. She loved everyone singing to her and said "hooray" and "piiiiittttttty" a million times while opening her gifts. It was pretty low key and I was thankful for the chance for our old and new friends to meet each other. Pics later, when I steal them from someone else. As usual, Derek and I were too busy running around to take pics.

- Kira started school! She's in one of the blended classes. 5 typically developing kids and Kira is the third child in the class on an IEP. She's the youngest, the only girl, and the only child with Ds. The first week was a little rough, but yesterday she walked in like she'd been doing this for years. I think it's going to be a good fit for her.

- Other good stuff: We've had lots of chilling with family good times recently. Thanksgiving was lovely with Derek's parents. We spent the majority of the weekend in Shreveport with my parents and had a wonderful time. More on that (with pics!) later.

I've been busy crafting, crafting, crafting and want to share one project with y'all. I made this tutu and drawstring bag for mailing it in over the weekend:

I've donated them to the Zoromski's auction so that they can get their daughter Lily home. Lily is in an orphanage overseas. She is five years old with Ds and it is a miracle that she hasn't been sent to an institution, yet. Lily is a twin, her birth parents kept her biological sibling. You may not now it, but Michelle and Brian are also the parents of twins. Ruby's identical twin sister, Lydia, died at birth. As Michelle put it, they are a family missing a twin and Lily is a twin missing a family. Amazing.

Head over to A Home for Lily to check out all the cool items in the auction. I know Michelle, Brian, Karly, Braden, Ruby, and especially, Lily, would appreciate it!

Grab This Button

And I promise to be a better blogger. At least, I will once I get laid off from Santa's Workshop.

cute pic

2009-11-09T11:08:00.001-08:00

"Mom, would you like to see the cute picture I took of Kira and me? Kira looks so cute in it!"

(I think the photographer looks pretty cute, too.)

batch cooking day

2009-11-08T18:10:00.000-08:00

Derek took the kids to see his parents today and I stayed home to do a small round of batch cooking (a la Money Saving Mom). It went pretty well for my first time, I think. Definitely awesome to have the whole house to myself!

I fired up both slow cookers, the bread machine, and the stock pot on the stove top.

Final tally:

3 bags of chicken stock (2 cups per bag) - I had a couple of bags of bones from roast chickens in the freezer. I chopped up onions and carrots for potato soup later in the week and added some to the stock as well.

2 bags of pinto beans w/bacon (2 cups per bag)

1 bag of bean/bacon broth for soup later (2 cups)

2 bowls of pinto beans - 1 for my lunch today and 1 to make refried beans with tomorrow

3 bags of garbanzo beans (2 cups per bag)

2 loaves of bread - 1 white and 1 maple oat (first time making this, yum!)

4 dozen chocolate chip cookie bites (+ one rather generous hunk for the taking-a-break mama)

2 cups chopped onion

2(ish) cups chopped carrots

It was a last minute plan, so I was mainly using what we already had on hand. Next time, I'll try to do more. I just didn't want to overwhelm myself the first time! Because I was mainly using the slow cookers and the bread machine, I was able to leave and run a couple of errands and clean out the fridge - woo-hoo!

Here's a not fabulous pic:

And bonus shots of the cutie kids before they left for the day:

If anyone wants recipes, lmk. Hope everyone had a wonderful weekend!

jacksonisms

2009-11-06T09:18:00.000-08:00

A couple of days ago:
Jackson (hollering from the bathroom): "MOOOOOMMMMMM"
Me: "Did you poop?"
Jackson: "Indeed I did, and it is quite disgusting."

This morning:
Me: "Jackson, where's your sister?"
Jackson: "That's not my concern."

Brotherly advice for Kira: "Kira, don't ever fall down. It really hurts." (lesson learned after a spectacularly clumsy crash into the rocking chair - he is his mother's child.)

ARD - advice needed

2009-11-05T07:04:00.000-08:00

We're getting ready for our ARD* meeting on the 18th. I'm attending a sort of "getting ready for your first ARD" training session next week.

Our OT (last visit, so sad) told me that if Kira starts in the blended class, to request that we have an OT monitoring Kira's progress periodically. (Assuming that Kira isn't offered OT, initially.) Laurie said that whenever we have an ARD, to make sure that we have concrete reasons for requesting various therapies, rather than just saying that we want OT (or whatever). Specifically, she said that we should request that Kira be monitored for hand strength, hand skills (grasp patterns, bilateral skills), and self help skills (eating, dressing herself, etc).

Brenda left this comment on an earlier post: Be sure to keep notes and documentation on/about all the ARDS.......keep copies of everything, phone calls, etc. You never know when you might need that data. (Thank you, Brenda!)

Beth recommended visiting classes to see what we feel the best fit for Kira would be. (Thank you, Beth!)

I'd love any advice anyone else wants to share about being prepared for the ARD. I don't anticipate having problems. I just want to be ready!

Thanks, y'all!

*ARD Meeting (Admission, Review, and Dismissal) - Annual review of a student’s special education program that includes an update of the student’s progress, a review of the current Individualized Education Plan (IEP), and development of a new IEP for the upcoming year.

WIP Wednesday

2009-11-04T08:00:00.000-08:00

Works in Progress Wednesday

I'm finally posting some pics of recent craft projects!

Girlie tutu for Isabelle's bday party - I have enough of the ribbon to do another one of these for Kira:

Scarves for FIL and SIL bday gifts:

kind of lacy for SIL:

a smidge more manly for FIL (he actually couldn't tell the difference between the two!):

I learned how to crochet from a friend who learned how from her dad. She didn't know the names of the stitches when she taught me, so I haven't been able to read a pattern. I thought I should go back and teach myself how to crochet. Derek brought home a book from the library and I have yet to find any of the stitches I currently use in the book. So, I don't know what it is I've been doing all this time! Ah well, I can make scarves and blankets with my crochet-sort-of technique.

Current WIPs:

I'm finishing up a baby blanket for my nephew's Christmas gift. It's crochet-sort-of.

I'm working on a checkers quilt for Jackson. I have the squares (64 of them!) all cut out (Thank you Kam and Teri so so so so so so much for the cutting mat and rotary blade!!). I need to sew the board itself and figure out how I want to do the border. I've never quilted before, so I thought this would be a good starter project.

I'm going to make a mini dress up kit for my niece (almost 4) - with a tutu, superhero cape, and magic wand.

That's all the Christmas I've started so far. If you're doing a handmade Christmas, I'd love to hear how your projects are going!

31 for 21 recap

2009-11-03T13:10:00.000-08:00

I wanted to do a sort of wrap-up post for 31 for 21, even if it is a few days late. I enjoyed participating in 31 for 21 this year so much. I found some new blogs, had lots of interesting comments - even some from new readers, and really relished spending some extra time with our community.

I didn't get a post about Kira's birth story done. I've been so focused on the ECI/PPCD transition, that I just couldn't make myself gather my thoughts well enough to do a post about that bittersweet day. Maybe next year.

I didn't quite make 31 posts, but I got closer than I thought I would! Again, maybe next year. If even one person changed the way they think about Down syndrome, it was totally worth the attempt.

Thanks for reading, y'all!

Halloween pics

2009-11-01T08:25:00.000-08:00

We went to a lovely Halloween party last night - much fun had by all! Jackson decided yesterday morning that he wanted to be a "superhero cowboy," so I spent the morning crafting that costume. Kira went as a pirate. I was a bath pouf. Derek was a hippie. There are, of course, no pics of Derek.

Hope everyone had a lovely Halloween!

So, today went well

2009-10-29T19:54:00.000-07:00

Kira's testing today went so well! I was so nervous. We've been told by her therapists that there was a chance that she might be doing so well that she might not qualify for services. A lovely problem, yes, but one that made us very nervous. Private therapies aren't an option with our budget, so if she didn't qualify, we would be winging the next two years.

So...the cut-off for services is scoring an 80 or above on whatever the test was. She scored a 77. And I was thrilled! She gets services AND is doing really well.

We're not sure if she'll start off in a blended class or in a PPCD (Preschool Programs for Children with Disabilities) class. I'll learn more at the ARD meeting.

The school is really cool. As I've mentioned before it is just Pre-K, PPCD, and blended classes. Each class has 10 students. The blended classes are 5 students on IEPs and 5 typically developing kids. They have a little computer lab, a library, a gym, and a teeny tiny lunchroom.

The speech path at the school worked for ECI for awhile. We saw her a couple of times when Kira was one. She came into the office today, while Kira and I were waiting for the testing to start, and said, "I don't know if you remember me, but I think about your daughter all the time! I remember how great her speech was so early and how verbal her brother was, too." It was awesome hearing that, and we are very excited to get to work with her again.

The testing itself took about an hour and a half. I was amazed that Kira hung in there for that long, but she was "on" the whole time. She really seemed to enjoy it.

I feel so much better now that we're on this side of the whole thing. I'm terrified of sending my tiny girl off to school, but I'm really excited for her new opportunity.

Thanks again y'all for holding my hand these past few days!

thanks y'all

2009-10-28T08:16:00.000-07:00

I am so lucky to be a part of such a wonderful community of people. Thank you all so much for all of the supportive comments on my last couple of posts.

I'm getting on my own nerves with the worrying, so I'm shelving it until after the testing is done. If you're the praying type, though, could you send some our way for Kira's testing tomorrow? And if you're not, I'd love some positive energy from you.

Moving on.

Up for today: much laundry, Halloween costume construction, and some batch cooking. It's a gray day here in TX, so the kids and I are staying in. They are currently eating popcorn for breakfast. Hey, it's a whole grain.

I hope y'all have a lovely day and thank you, thank you, thank you for making a mama feel so very supported!

see here's the thing

2009-10-27T13:43:00.000-07:00

Mothering itself is a hard gig. (and Fathering, too, I assume - but I can only speak from my perspective.) You're constantly faced with "am I doing the right thing?" And the guilt, oy the guilt.

I've said before that mothering a child with Down syndrome is Mothering to the 21st degree. And it really is.

Is-my-child-hitting-milestones becomes Is-my-child-hitting-milestones-with-5-different-people-keeping-track.

And while you hope that all of those professionals have your child's best interests at heart (and we've been lucky in that respect, I think) the reality is that this is their job. And some days they don't want to be there. And some days they are thinking about their own kids. And some days your child is the hour they are just trying to get through.

And I'm having a hard time with turning my girl over. I'm sad. With Jackson, Derek and I just decided for a variety of reasons that we wouldn't do a traditional preschool. With Kira, it's this BIG DECISION that comes with more testing, and more paperwork, and new people observing and commenting and grading.

So, I worry about Jackson's future. But with Kira it feels that all of these decisions when she's just an almost three year old little girl will have such huge import on her future.

And who the hell decided that I was qualified for all of this? I know that with our kids we should presume competence, but I'm having a hard time believing in my own competence.

I'm sure that I'll look back at this post next year and realize that I was worried for nothing. I'm having a hard time right now, though.

procrastinating

2009-10-27T07:06:00.000-07:00

I'm supposed to be filling out the paperwork for Kira's PPCD testing right now. Obviously, I'm not doing it.

I went to pick it up yesterday, and I was really surprised at how emotional I felt when I left. I almost started crying right there in the parking lot.

The school is nice. Everyone I've met is very friendly and I've heard wonderful things, so it's not that.

When I got there, I was surprised to find Kira's ECI coordinator there, too. She just happened to be in the office where I needed to pick up the paperwork. And then it was about five minutes of signing this release for info, that release for info, and three thick stacks of paper for me to take home.

The PPCD coordinator (no idea what her title is) said, "Now, it's Down syndrome, right?" and when I said yes, "Oh, we LOVE Down syndrome. We have two with Down syndrome in the class right next door! She is coming here, right?" There are, I think, 10 different PPCD programs here - most are in the elementary schools, but one is just preschool for 3-4 year olds and kids on IEPs. They have classes with just typically developing kids, classes just for kids on IEPs, and blended classes. Kira will most likely be in a blended class.

I think what bothered me was that here we are at the start of the next chapter and to the powers that be Kira is a pile of paperwork and "Down syndrome". And while I have no doubt that they will love my daughter, it's not because she has Down syndrome. She's my smart, beautiful, funny daughter not a bunch of test results and check marks on a development chart.

Throw in my ambivalence about sending her to preschool five days a week at the age of three and I'm a mess.

A procrastinating mess. Ugh.

dangit

2009-10-26T07:40:00.000-07:00

I missed two days of 31 for 21. I spent Saturday morning and early afternoon frantically sewing, then we headed to a birthday party and then to the in-laws for the rest of the weekend.

I'll post two extra to at least get the 31 in.

Final total on the crafting this past week: 1 tutu, 2 scarves (crochet), 3 capes (1 vampire, 1 superhero boyish, 1 superhero girlish), 1 skirt for Kira's costume that turned out ridiculous, 1 pants for Jackson's costume that were way too short

The birthday party we went to was costumes optional. I really thought that everyone would be in costume, but only like three kids were. Jackson wanted to be vampire batman (?), so I made him the vampire cape. I wanted to make a sort of jumpsuitesque thing but ran out of time. So, he wore the cape, his batman mask, vampire teeth, a batman underoos shirt, and the too short pants. He spent the whole party running around in just the underoos shirt and too short shiny lounge pants (think Hugh Hefner highwaters).

Kira ended up wearing Jackson's glutterman suit from last year and her girly superhero cape that I made. Of course she spent the party in just the lime green jumpsuit. That costume has had a hard year, so once we got to the party the seams started popping open. Nice.

No one asked what their costumes were supposed to be, because I don't think they were quite sure if they were costumes or not. I don't know how this is reading, but the memory of it is making me laugh so hard I'm crying. They looked like poor little urchins running around that playground!

Now for this week:

We have Kira's testing for PPCD. I'm so nervous. I have to call and get a copy of her hearing test to take with us. And I have to go pick up the paperwork to fill out. I'm nervous.

I need to make new costumes for Saturday. Honestly, I'm tempted to just raid the dress-up box for both of them.

Anyway, hope everyone had a lovely weekend. More later.

the best part

2009-10-23T11:15:00.000-07:00

Down syndrome New Mama had a lovely post sharing her feelings about "the best part of Down syndrome." I've been thinking about it and kept ending up with a three way tie. I love our kiddos' eyes. I adore our kiddos' feet. And the flexibility because of lower tone amazes me.

So today, Kira put on a demo of why I love two of them.

She LOVES her toes. I mean loves them like a baby doll or a blankie or something. She talks to them all the time and likes for us to talk to them, too.

Today, she was eating an apple and apparently her toes were also a bit hungry.

Kira: "Toes? Bapple? es...bapple"

She pulled her foot up even with her chest and gave her toes a nibble on the apple. Then she pulled her foot up to her mouth for a quick "tiss" on the toes followed by a hug that looked a lot like she was rocking a baby, only instead of a baby, her leg and foot were completely tucked up next to her chest. I wish I had been close to my camera. AND the nice part about it is I don't have to worry about having a back-up lovey replacement for her toes!

So, definitely LOVE the feet LOVE the flexibility.

But, oh how I love her eyes.

quick post

2009-10-22T19:33:00.000-07:00

Sorry I don't have much time (or much to say) today. I'm busy making birthday gifts - 4 of them - for parties in the next few days. I've finished a tutu and one scarf. I have one scarf and one superhero cape left to go. And then the kids' costumes. Oy!

The scarf took me two days to finish. Kira sat with me several times and played with the yarn and pretended to crochet while I worked. It was very sweet and lovely to be able to share that with her.

If you crochet (or knit - I'd love to learn), what age did you start teaching your littles? I'm not sure how to get started with her, but I'd love to pass the creating on to my girl. And to Jackson, too, if he's interested.

Again, sorry this is short and not Ds related, I just want to make sure that I really post 31 times!

wordless wednesday

2009-10-21T08:00:00.000-07:00

kira speak

2009-10-20T07:11:00.000-07:00

Kira seems to be in a new language development period. A few quotes from yesterday:

- I was blogging and she came in the room and said "oll-uh". I knew she was approximating a word and not just giving me a dispatch-from-Kira, but for the life of me, I could not figure it out. Until I followed her into the living room and saw that she was trying to open up her STROLLER for her baby doll. Duh, Mom.

-Last night we were watching Dancing with the Stars (go Kelly!) and she looked up and did the sign for phone, said "i-tuh" which I think is "I talk", and said "Papaw". We said, "Kira, do you want us to call Papaw?" and she said, "NO!".

Then about fifteen minutes later, she did the sign for phone, said "i-tuh Nene". We said, "Kira, do you want to call Nene?" and she said, "es". We of course had to let Papaw know that she had no interest in talking to him.

-Monday nights are "boys night" while I watch DwtS. Boys night = hot dogs and fritos. So, last night, Kira introduced her newest word, "ot dog".

Oh, and I remember one from last week that I wanted to get down. Derek was off and I was taking a shower and getting ready to go somewhere about the time he usually leaves for work. I came out of the shower and Kira looked at me and said, "Mommy? Work?". She was totally making the connection between the getting ready and the time of day and transferring that from her Daddy to me! Of course, I had to say, "No baby, Mommy is always at work." (She doesn't say work that clearly, but I'm not sure how to write her approximation. She says it along with the sign for work and it's pretty close to the actual word.)

I know that sign language can be a hot button issue with our kids. Some parents feel that using sign language might hold their kids back from speech development. I can see that point, however in our case, sign language is a huge help. When Kira has a sign to go along with an approximation, I know right away what she's saying. Once she begins actually saying the word, the sign disappears. I think, for Kira, sign language helps to reduce frustration and encourage communication.

One more story - Kira made up her own sign to use when she wanted me to sing lullabies to her. Very quickly, she started saying "bye-bye" and using the sign with it. So, I knew that "bye-bye" was temporarily "night-night". Now she's saying "nye-nye" (no idea how to write that) and because I know right away that she's saying night-night, she doesn't use the sign. Now, she only uses that sign when she wants me to sing lullabies.

While I would love for her to have the vocabulary of her brother at this age, I LOVE the fact that she uses her limited vocabulary in the ways that she does. Watching her problem solve and figure out how to communicate is really amazing.

weekend pics and a Ds observation

2009-10-19T08:10:00.001-07:00

We had such a wonderful time this weekend. We try to do a get together with my Mom's side of the family at least once a year, twice if we're lucky. My aunt found an awesome cabin near Lake Whitney this year. The cabin was perfect - lots of room for everyone and well stocked with anything you might need - dishes, movies, games, toiletries, etc. The surroundings were rustic and beautiful.

4 generations were represented - my grandmother, my mom and aunt and their husbands, my siblings and I and our spouses, and our kids.

My grandmother brings me to my Ds observation. I know that this isn't true of all individuals with Ds, but I do think that the chance to have a greater capacity for empathy resides in the bonus chromosome. Kira will make her grandparents crawl through fire for a smile. The second a GREAT grandparent walks into the room? She runs over for a hug. Even though she rarely sees her great-grandmothers and I know she doesn't recognize them, she knows that now is the time for a great big hug.

warning: the rest of this post is very pic heavy and probably only of interest to my family.

Mountain Man Derek

This pic cracks me up.
The guys couldn't get TV reception in the house.

This was the only spot where they could get reception for this particular game.

When the next game came on, they had to move the tv to another spot!

um...you might be a redneck if...

I'm not sure what Jackson was doing,

but based on my face he was about 2 seconds from getting in trouble.

Heading out for a walk in the woods

Our view on the walk

This pic makes me think of those shots where you see all of the paparazzi behind a star.

Jackson making rolls with my aunt

My cousin carving a pumpkin

Kira protecting her pumpkins from my cousin

She carried those pumpkins around all weekend - so cute.

cutie girl

cutie boy

Jackson learning chess from my cousin.

My sweet cousin spent about an hour and half teaching him.

lovely weekend

2009-10-18T16:24:00.000-07:00

We just got in from a lovely weekend with my Mom's side of the family. Lots of laughter, yummy food, and not much sleep.

Hope everyone had a wonderful weekend. Pics coming up this week and more Ds related posts for 31 for 21.

Off to catch up on laundry and (hopefully) go to bed early!

navigation

2009-10-17T12:50:00.000-07:00

Dear Son,

I know that you know that the Library means a lot to this family. It's where your Dad and I met. It's where your Dad works now. You were about one week old the first time you went there. Same for your sister. We go at least once a week. Sometimes we go several times in a week. It is five minutes from our house. We love the Library.

And so, dearest love, I assure you that when I put your sweet little self in the car to head to the Library, I KNOW WHERE I AM GOING. I AM NOT LOST. YES, I AM SURE.

Love,

Your Mother. And Santa.

Flashback Friday

2009-10-16T11:59:00.000-07:00

Flashing all the way back to last Friday! State Fair pics! It was a cold drizzly day and we had so much fun.

What should we do first Kira?

Me eating

(fried butter - FIL bought an order and made me try a bite - gross but good)

Me eating

(shrimp corn dog with spicy sweet jalapeno sauce)

Me letting Derek know I'm tired of him taking pictures of me eating

Jackson eating

Faux eating

Cute shot of the kids while we were trying to get a pic of all the Perdue grandbabies

Jackson taking a break in the butterfly garden. We didn't see many butterflies, but we saw LOTS of different caterpillars. We were the only ones there, so we had the luxury of a tour from one of the docents.

Kira spent the day riding in style

Jackson and me.

I'm pushing the bag lady cart.

We looked like a caravan - two strollers, one wagon, and the cart.

Ridiculous.

Cotton candy and the starlight parade to end our day

Not one single shot of Derek, though. I'll have to steal some pics from the in-laws.

would I change it - revisited

2009-10-15T13:49:00.000-07:00

I recently had a discussion with some close friends who also happen to parent children with funky chromosomes. During the discussion, the "would you change it" question came up in a roundabout way. This is a hypothetical question that can really divide our community, I think. And for the record, I don't think it matters where you fall, or if you even think about it. We're all families loving our kids, trying our best to do what we think is best.

So, back in March, shortly after I started blogging, here's where I stood and what I said: No, I wouldn't.

I was really glad for the chance to revisit my thoughts, and here's what I said to my friends:

For the record, I am "one of those moms". I wouldn't change it.

If we're playing the "if I could change it" game, then what I'd change is society. I'd change society to a version that accepts people as individuals, as having worth simply because they ARE, not because they meet some predetermined level of achievement that somehow equals value. I'd change society to a place where the person sacking the groceries is considered as worthy as the CEO of the grocery chain.

Ds is part of Kira's genetic make-up. In ways that I'm not even aware of, it has had a say in who she is. I think she rocks the universe.

I would take away her heart issues. I would take away upcoming struggles. I would take away prejudice. Taking away Ds wouldn't guarantee that she wouldn't face any of those things. It might, however, take away her gorgeous eyes, her amazing empathy for others, and who knows what else.

But here's the true heart of the matter: we can't change Ds. We CAN change society - one person at a time. I'm different, Derek is different, Jackson is a different person than he would have been without Kira as his sibling.

One at a time. We can change society. I'll keep my daughter just as she is.

one down one to go

2009-10-14T13:21:00.001-07:00

God willing and the creek don't rise, I should have two napping crazies shortly. And then I should be able to get the Christmas crafting started.

On that note, I found the coolest site via SouleMama that I thought some of y'all might be interested in: Casey's Wood Products

They have natural wood blocks, balls, bowling pins, craft supplies, miniatures, and all kinds of stuff.

Warning: tons of links ahead. I don't want to post pics because I figure I only have maybe 2 more years before Jackson figures out the whole Santa gig. If he sees the pics here, believe me, he'll connect the dots on Christmas morning.

So, maybe 10 of these and a couple of these for a bowling set. I'm also thinking I'll sew up a checkerboard, tic tac toe board, and some other as yet unthought of board, plus a drawstring bag and some of these and these (depending on what I choose for game #3 - ideas?) for a portable board game set.

Check out these gorgeous beads - I think I'll get a bunch of them for a lacing bead set for K - such a lovely way to work in some fine motor practice. And they have all of these for creating little people.

I found this pattern for a drawstring play mat/storage bag thingie. I think it will go nicely with Legos or Kinex or something along those lines for one of J's presents.

Oh, I'm excited! Now, please send nap vibes toward Texas, won't you?

dear son

2009-10-13T13:03:00.000-07:00

You are tired. You need a nap. I know this because you started crying on the way to storytime because you dropped your toy in the car and I could not do the gymnastics required to retrieve it while operating a moving vehicle in the rain.

And FYI, Christmas is coming soon. If you do not take the occasional nap. I cannot make the occasional gift. Please do not make your mother stay up until 2:00 am in the five nights preceding Christmas to make sure that you have a sufficiently joyous holiday.

Go to sleep. Go to sleep. gotosleepgotosleepgotosleepgotosleep...

Love,

Your Mother. And Santa.

31 for 21

2009-10-12T13:31:00.000-07:00

Blogging every day is hard!

I mean I could blather on every day about something, I'm sure, but I'm having a hard time putting together meaningful posts about Down syndrome.

It's partly because I feel like I've said a lot of it before, but mostly, I think it's because we're just living life. Down syndrome is a part of our life, some days a bigger part, most days just part of it.

The other day at the zoo, while Kira and I were waiting for the gates to open and having a snack, a little girl and her mom sat down on the bench near us. The little girl was probably close to 3 and had a continuous running monologue: I'm climbing up on this bench I have a tissue I'm wiping my face we're going into the zoo we're going to see the monkeys I'm climbing down off of this bench... and then Kira broke into my conscious with: Eat Mommy...bites...moh

I had this weird moment of almost feeling jealous of the little girl's speech. All of those prepositions and contractions tumbling out of her mouth. It's not that I caught myself or corrected my thinking, but more like at almost the exact same moment I thought, "That's not how KIRA is supposed to talk right now. That's how that little girl talks. She's not Kira." Kira wanted some more to eat and she let me know.

She lets me know when she's not happy. She tells me when she is. She takes her limited, though growing, vocabulary of words, approximations, and signs and she makes it work. She works it to get what she wants, believe me. She works it to tell jokes and make us laugh, on purpose. She works it to let us know when her brother is being a selfish jerk, in her opinion.

And do you know what all of that is? That's smart. Or as Kira would say along with the sign, "mah".

sort of a post

2009-10-11T18:45:00.001-07:00

more of a checking in, really.

Today, Jackson got to spend about 8 hours with Aunt B. I think his day went like this: went to see a live performance of The Jungle Book, McDonalds, After Dark in the Park fall festival thingy, McDonalds. As Derek says, "It's good to be Jackson."

So, when Kira went down for her nap, I took advantage of the empty house to get some gift crafting done. Much crocheting later, I finished up a gift and am really pleased with the results. I can't say more or show a pic yet, because the recipient reads my blog.

Much crochet = No blogging

I'll pick back up with 31 for 21, tomorrow. I hope y'all had a lovely weekend!

OH and p.s. Derek saw a young adult with Ds while he was at work today, so that makes up for the State Fair!

Where were the peeps?

2009-10-10T14:00:00.000-07:00

I'll try to get pics up tomorrow. Today has ended up busier than expected. So instead, an observation.

I didn't see one person with Down syndrome, other than my daughter, during 9 hours at the State Fair yesterday. I really don't intentionally play spot-the-bonus-chromosome when we're out, but I do usually have an "ok, there she/he is" moment. And I like it. It makes me feel good to see Kira's peeps out and about in the community.

I'm not going to lie, in the past when I would see teens/adults out with their parents, I'd assume that they were together because they lived together. That the parents were having to care for their adult child for all of their lives. But, I've decided to instead assume that the adult with Ds is visiting for the weekend, or home from college, or having to take care of their parents in their old age. I like it better that way.

So, anyway, not one T21 spotting! I couldn't believe it.

Now back to your regularly scheduled weekend.

Flashback Friday - State Fair of Texas 07

2009-10-09T07:01:00.000-07:00

We were at the State Fair all day today. We had a fabulous time! I'll post pics from today, tomorrow. Until then, a couple of shots from Kira's first trip to the fair two years ago. Jackson was 2 1/2 and Kira was 10 months.

kira speak

2009-10-08T14:41:00.001-07:00

Derek, Kira, and I were checking out the Justin boots outlet in Ft Worth this morning. I think Kira might need some cowgirl boots. She walked down the display shelf like this:

"oooooh pih-ee boots! (takes a step over) oooooooh pih-ee boots! (takes a step over) oooooooh pih-ee boots!..."

And then she and I practiced walking tippy-toe while we waited for Daddy.

(ST and PT show up in the strangest places!)

people first language

2009-10-07T14:54:00.000-07:00

Yet another thing I didn't know prior to Kira.

What is people first language? People first language is recognizing that a person is a person not a diagnosis.

So, it's "child with Down syndrome" not "Down's kid" or "Down's baby". It can seem like a bit of a mouthful, especially when I'm telling a story related to Ds. "Kids who have Down syndrome may have blah blah blah. Sometimes kids with Down syndrome might blah blah blah." But, at least to me, those extra words do make a difference. A subtle but definite difference.

Kira HAS Down syndrome she's not Down syndrome.

Similarly, Kira doesn't suffer from Down syndrome. She isn't afflicted with Down syndrome. She isn't succeeding despite Down syndrome.

She has brown eyes, blonde hair, a stubborn streak, an awesome sense of humor, and Down syndrome. And she's doing just fine.

Check out Kim's post for a great explanation of people first language.

Happy Birthday, Baby E!!!

2009-10-06T12:20:00.000-07:00

I met a wonderful mother-to-be via an internet forum I belong to a few months back. We "met" because she posted that she had just been given a prenatal Dx of Down syndrome and someone else on the site gave her my info. Since then, we've chatted several times and I'm so excited to say Happy Birthday to her sweet, beautiful baby boy who was born yesterday!!!

Not sure how much info she wants to share, but both Mom and Baby E are doing well. He certainly picked an apropos month for his birth, didn't he?

prenatal Dx

2009-10-05T14:10:00.000-07:00

Sometimes I wish we would have known about the funky chromosome before Kira got here. Her first year, I thought that I was glad that we didn't know. I figured that my pregnancy would have been so scary if we would have known.

I hate so much how her first couple of days had to be. If we had known beforehand, her birth would have been a welcome relief, I think. We would have met her and seen how beautiful she was and we could have just been joyful. Instead of sad and scared.

I am thankful, though, to not have had to face the indecision. I don't think we would have changed anything. I think we would have been strong enough to face the unknown. But I am thankful to not have had to test that.

Either way, Kira is here now. And we think she rocks.

November 06

2009-10-04T13:48:00.001-07:00

A little birth story preview. I went into labor on Thanksgiving. Kira was born early the next morning.

Jackson - before he went back home (lil' punkin' boy)

Derek and I saying hello to our new baby girl

Sweet Baby Kira

And then we went to sleep for the night and woke up in an alternate universe.

spoiled

2009-10-03T11:41:00.001-07:00

That's how I'm feeling this week. I did not have to cancel one single planned activity due to illness - amazing.

We had two great playdates this week. Kids had fun. Moms had fun. Kids took naps afterwards. Perfect!

We had a lovely dinner in the new home of dear friends last night. They've only been in it five days, still unpacking, but you can already feel their warmth and hospitality settling into the spaces, making it most definitely their home. They served an amazing fall meal - roast chicken, risotto, and this yummy butternut squash recipe.

And tonight we'll be visiting with my parents at our house. If they're lucky, Jackson might even treat them to a "40 chapter puppet show."

Spoiled rotten and lucky, I tell you!

(Sorry it's not an actual Ds related post, today. That's kind of how Ds is though. Some days you completely forget about it.)

premonitions

2009-10-02T11:11:00.000-07:00

31 for 21 + Flashback Friday today

So, I'd be willing to bet that until you knew someone with Ds, you had no idea October was Down syndrome Awareness Month. And that is almost true for me, too. But...

The September before Kira was born I rec'd the Oct issue of a parenting magazine (Parents? Parenting? I can't remember.) Anyway, I was flipping through the issue and came to an article about 4 families and their children with Ds. I almost flipped right past it. But for some reason, I just stopped and thought, "No. I need to read this." And I did. I don't remember my reaction to the article, but I clearly remember stopping and making myself read it.

2 weeks before Kira was born, I was at my last ob/gyn visit. In the waiting room, I sat directly across from a teenager with Down syndrome and her mother. And I was struck by how self possessed she was. How "normal" she seemed. How sure of herself. They were called back before me and I went back about five minutes later. Every single nurse and tech in the office were gathered around her talking and smiling. All of them. People who you're lucky to get two minutes with were giving her as much time as she would grant them. I mentioned it to my ob/gyn and she smiled and talked about how great she was.

My whole pregnancy was filled with little signs, I think. 4 at home tests failed before finally getting a positive. Kira's heartbeat didn't show up at all on the first sonogram and we prepared ourselves for not being pregnant. Most of all, I felt uneasy during my whole pregnancy. Like something was off. Honestly? I thought I might die in childbirth. I finally got life insurance on myself. I showed Derek everything he needed to run this house, pay the bills, make the dr's appts. I got ready, just in case.

At the same time, whenever anyone would ask me about Kira, I would always say, "I can't wait for her to get here! I want to meet her. I think she's really going to give me a run for my money!" Yep, I was right.

So, when she showed up sporting designer genes, it was a shock. a surprise. terrifying. BUT, not completely unexpected.

Happy Down syndrome Awareness Month!!

2009-10-01T12:23:00.000-07:00

October is Down syndrome Awareness Month and in honor of my girl and all of her amazing peeps, I'm taking part in 31 for 21 - 31 days of posting to bring awareness to individuals and families living with Trisomy 21.

I wasn't blogging last year, so I'll finally get to post about Kira's first year and what that was like for our family. I'm looking forward to sharing how much one little bonus chromosome has meant to us.

So, for today, I thought I'd share a smidge of what mothering an almost three year old with Down syndrome looked like this morning:

3,147 rounds of "row, row, row your boat"
1 trip to the zoo, that included:
saying "hi", waving to, and completely delighting about 20 different strangers
asking the elephant if he was having "bites"
splashing and playing in countless puddles
begging her brother "peeeaaaasseee" to wear his new necklace and then saying, "Dee Buh-buh tuh-weet" (Thank you, Buh buh, you're sweet) when he let her wear it.
1 conversation with another mother (Hey M.E.!) re: my nervousness about our upcoming testing for the transition from ECI (birth to three) to PPCD (three to five)
1 just-because-she-felt-like-working-herself-into-an-I-feel-sorry-for-myself fit (lest anyone remains under the impression that T21 = 24/7 happy. It doesn't. For real.)
reading a book about colors together and not being surprised at all when she named "puh-ple" right away. No question, it's her favorite color.
listening to her "bead a book" to her babies right now when she's supposed to be napping

Not much different than mothering a typical almost three year old, huh? And yet, T21 does touch our lives constantly. I could delve further at this point, but I have to save something for the next thirty days!

And stealing this idea from Lisa, at Bridget's Light, if anyone has any questions about Kira, her development, our family, please leave a comment and I'll try my best to answer. And thank you, Tricia, for hosting 31 for 21 again this year, I am honored to get to participate!

yep. he's a boy

2009-09-24T12:00:00.000-07:00

We're so proud - Jackson wrote his first ever, no help from Mom, sounding it out himself word.

Here it is:

And look! Plural!

This was followed by poo-poo and tee-tee, of course. I figured we might as well run with it, so I made him a thematic word list and told him to get to practicing.

In related news, my darling son asked me if I wanted to see a smoke signal. He then proceeded to turn around and...well...see above.

We're so proud.

brush your teeth little lion

2009-09-23T08:23:00.000-07:00

Last week, I heard Kira messing around in the bathroom. Here's what I found:

She's telling me to "top Mommy."

Lots of teeth brushing going on around here. Largely inspired by the "Brush your teeth, little lion" song from Jojo's Circus. Kira's teeth, her baby's teeth, buh-buh's teeth - dang sparkly teeth around here, let me tell you.

"Teeth, Mommy...brush Mommy...Baby? Baby? teeth?...Mommy, baby teeth"

(And yes, those are winter jammies "customized" for summertime.)

handmade christmas - lots o' links

2009-09-20T07:39:00.000-07:00

I'll get some photo/updatey posts up soon, really. (Hey, has anyone seen that little cord that hooks the camera up to the computer? Just wondering.)

Anyway, thought I'd share some project links for any of y'all who are doing handmade Christmas projects.

Nested has the cutest project for storing/displaying hair clips. I'm not sure if I'll do this for Christmas, but it's definitely going in my future birthday gifts file. (Found via The Long Thread.)

Fantastic Toys Blog has a cute 5 page downloadable pdf of gnome themed paper dolls, finger puppets, and gnome bowling - I'm using it for stocking stuffers. (Found via Nested.)

One Inch World has a super cute counting bean bags set.

I found that link from this awesome sewing links post from Thrifty Craft Mama. (Cate - there are felt food links in there, too.)

Hope that gets some creative juices flowing for you! Now, I need to stop looking at all these wonderful blogs and get to crafting.

Sweet Baby

2009-09-19T07:52:00.000-07:00

Baby Ryan is waiting for his forever family to come and get him. I'd love to click on his page and see that the adoption agency has so many requests that they are sure that his forever family is among them. And he's super cute, too - check him out!

You know you're a mom when...

2009-09-16T08:34:00.000-07:00

your daughter walks past her father, sitting on the couch, to deliver a plate to you and request "toast". You, of course, are sitting on the potty.

Down syndrome in the 21st Century

2009-09-08T12:00:00.000-07:00

I saw this over at Ruby's Life and wanted to share it. Thanks for posting it, Cheryl!!

unimaginable really

2009-09-07T07:40:00.000-07:00

Jackson and Derek had a little "boys night" computer game playing last night. Overcome by the wonder of it all, Jackson burst out with:

"The computer is a great invention! And think what life would be like without computers! or cars! or light bulbs! or those little things you stick in the ends of your corn cobs!!

Good morning!

2009-09-06T07:21:00.000-07:00

I just wanted to put up a quick post to say that after battling tonsillitis for almost a week, I'm finally feeling human again. And I'm so glad that September is here and August is finally over. I'm praying for a boring, uneventful, and HEALTHY September - join me, won't you?

Hope y'all are all doing well! I'll be posting and catching up on all my blog reading this week.

Also wanted to let you know that Down to Earth (a blog I LOVE) now has a forum, if you're interested.

Have a lovely, lovely weekend!

OT visit

2009-08-27T11:03:00.000-07:00

We saw Kira's OT today. It was a great visit and I can't believe we only have 3 more. I'm just going to bullet point, so I won't forget anything.

-I mentioned the suggestion we rec'd from the clinic OT re: pushing golf tees into styrofoam to work on hand strength. She thought it was a good idea and also suggested using playdoh.

-She also suggested hiding small things in balls of playdoh (small pegboard pegs, buttons, etc) and then letting Kira try to dig them out. Jackson played with it while we were working on other stuff and L varied the activity by asking him to do it with his eyes closed. It's an activity that works on both hand strength and cognitive/memory skills - pretty cool.

-We've been working with putting things like crayons, q-tips, etc into a shampoo bottle - to help Kira practice the hand positioning she'll need for writing. L wants to take it further by having Kira pour the items back out in a more controlled fashion and use her opposing hand to catch and then pull the item out, rather than just pouring everything back out onto the floor. She suggested working on this in the bathtub by putting counting bears and water into the bottle and letting Kira pour it back out - catching the bears as they come out.

-She suggested getting some flat stringing beads - or making some out of heavy cardboard or thick foam (I have a salt dough recipe that I think I'm going to try - I'll post if it works). Kira totally gets stringing the bead onto the needle and that she needs to pull the needle through, but she always ends up pulling the needle and the string coming out of the other side of the bead and not the bead itself. L thinks if we have totally different beads she might get past that. She pointed out that stringing beads is a three step process that is similar to the skill set Kira will need for buttoning.

-We need to keep encouraging Kira to do activities with her left hand. I swear she came out of the womb right-handed, she always leads with her right hand and stabilizes things with her left. L wants to make sure that her left hand is doing as well as her right.

I think that's about it. We discussed the clinic and a little bit more about our upcoming transition. Overall, a really enjoyable hour!

Faith

2009-08-26T07:36:00.001-07:00

We ended up on some mailing list that resulted in a catalog of children's Halloween costumes arriving yesterday. Jackson is sitting on the couch with his dad circling the ones he's interested in. Every so often he comes in here to ask me, "Mom, do you think you can make this one?"

Here he is last year. He was Glutterman - a superhero of his own creation.

100 and 22

2009-08-25T13:30:00.000-07:00

Ok, this really is my 100th post! And 22 is the final tally on the number of wasp stings Jackson ended up with yesterday. Yes, really, 22 wasp stings.

While I was outside hanging out the laundry, Jackson and Kira were playing in the yard. They started trekking through a flower bed area that has tall ground cover grassy stuff. All of a sudden, Jackson started screaming "OWW OWW OWW", I turned around and he was in a cloud of wasps. I ran over to him, knocked the one off that was still on him, grabbed him and Kira and ran into the house. I can't believe Kira didn't get stung; she was only about a yard away from him.

I started slapping baking soda and water all over him and gave him a dose of ibuprofen. I had to call the dr to find out what dosage of benadryl to give him. All the while, I am freaking out internally. What if he had been allergic? 22 stings!!

Final tally:
17 stings on his leg
2 on his back
1 on his arm
1 on his hand
1 on his face

Poor baby! He kept saying, "I wish I didn't walk through there!" I asked him if his leg felt like fire and he said, "I don't know what fire feels like." Good point.

I was amazed at how he handled, though. It had to have hurt like hell, but he quit crying after about 10 minutes. He hung out in a benadryl induced haze and watched tv all day. I think the only time the stings bothered him was when Kira would pat them while trying to mother him.

Needless to say, they aren't going back into the backyard until we bomb the holy living out of it.

stuff

2009-08-20T14:39:00.001-07:00

I'm tearing up every time I see my Ted post, so I need to get something else up here. How 'bout some random?

- Things that crack me up: The little password thingies that Google puts up when you comment on someone's blog. I swear I'm going to make up definitions for them some day. Also, the suggestions blogger's spellcheck gives me. What? couponing, scrumbled, and whatcha aren't real words?

- Jackson and I were reading a book involving monkeys, you know, monkeying around. I told him it was time for him to rest and that I wanted him to lay down, be quiet, and he said, "and not start personing around?" - he kills me, that one.

- My friend, Michele (Hey Michele!!!), very thoughtfully reserved Amanda Soule's new book for me when she was going through the new books at work (She's a librarian) - I've been enjoying it so much and can't wait to get started on some of the projects.

- This has been such a strange month for us. Lots of ups and downs. But mostly, this month has shown me how very blessed we are with dear friends who love us and who are there for us no matter what.

- And, Dancing with the Stars starts on Sept 21! I can't wait!! (Hey Michele!!)

See, random, don't say I didn't warn you.

RIP Sweet Ted

2009-08-19T12:29:00.001-07:00

We had to say good-bye to our sweet Big T on Monday night. He was a good friend and we will miss him terribly.

Ted 7/4/96 - 8/17/09

(Ted - please tell Rocco we miss him, too.)

quote

2009-08-18T07:21:00.000-07:00

“Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be encumbered with your old nonsense.”

– Ralph Waldo Emerson

Big week

2009-08-16T19:10:00.000-07:00

So much has happened this week, it's hard to know where to start. Today, we welcomed Jackson and Kira's brand new baby cousin. I'm not sure if his parents want his name all over the blogosphere, so we'll just call him "Bandit" - Jackson's suggestion for his name when he was still in utero.

He's beautiful and very courteously arrived on a day that worked out nicely for everyone. Kira was FASCINATED with him. She sat and looked at him forever and even shoved Jackson out of the way when he tried to get a look. She was saying, "Baby! Baby!" Then she started cataloguing him for everyone, "Baby hat. Baby eyes. Toes" - she'd look up at us every other word to make sure that we were noticing that yes, the baby did have a hat, eyes, and toes. Then she asked Bandit, "Baby? Eat? Bites?" and "Baby bath?" - I think she wanted to make sure that he had everything he needed. When the nurse came to check his blood sugar, she started pointing out all of his assets to her, too. I hope that they end up the best of buds and give the big kids a run for their money.

Other big news this week - Jackson is reading! Really reading. He's been pointing words out to me forever, but I assumed that he was sight reading. We were at the library Tuesday night and I saw a set of Bob Books. I told Jackson that we could check them out and start working on reading, if he wanted to. He was so excited that he wanted to sit down and look at them right then. And then he read the first three books, just like that. Sounded out words, everything. There are 12 books in the set, he read 11 of them when we got home that night. Crazy. While we were waiting to go in to see the baby, he read to his grandparents and to a random gentleman also waiting. He made sure to hold the book so that Mr. Random could see it, too. That kid cracks me up.

On Thursday we went with friends to the Modern Art Museum in Ft Worth. They were hosting a kids film festival and we went to see The Velveteen Rabbit. It was a version I hadn't seen before and we all really enjoyed it. The cultural district in Ft Worth is really lovely and there is a gorgeous swath of lawn between the Kimbell and Amon Carter Museums. We had a lovely picnic and then all of the kids played in the fountain in front of the Kimbell. Very cool. I wish I would have remembered my camera. At one point, Kira was sitting on the edge of the pool, kicking her legs in the water and munching on an apple. She was so cute, just enjoying a beautiful summer day.

Also this week: Kira's first visit to the Down syndrome clinic went really well. I hit Kroger's super doubles on Saturday. And we enjoyed visits with 3 different aunts. Busy week and weekend - I think we'll have a take it easy day tomorrow.

I hope y'all had good weekends, too!

Down syndrome clinic

2009-08-14T15:16:00.000-07:00

phew - I am worn out! We had Kira's first visit to the Down syndrome clinic today. She's seen our geneticist annually up until now.

This was our schedule:
9:15 arrive
9:30 OT consult
10:00 geneticist
10:30 PT consult
11:00 Hearing eval
11:30 Speech consult
12-1 lunch
1:00 - summary meeting with geneticist

I was so nervous. Kira has always had her therapies once a month and I feel that that is just right for her. But, I was so scared that all of these second opinions would show that maybe I should have pushed for more. I was also so worried about her hearing eval.

I had nothing to be worried about, though! All of the therapists agreed with Kira's current stable of professionals. The PT recommended having her fit for shoe inserts (not the full ankle kind) - more for later development. Her current PT has been on the fence about it. The PT also agreed that at 3 we should get her involved in 1 or 2 community based programs, like tumbling, soccer, or dance. Kira walked up and down the stairs for her and showed off her "blast-off" skills. Jackson was with us and left the PT room saying, "I LOVE the Down syndrome clinic!"

The OT was impressed with her skills and gave me some more ideas on increasing her hand strength. She suggested letting her push golf tees into styrofoam. She also said we could start working with a small pair of tongs - to get started on the motions needed for using scissors.

The Speech path wants us to work on the "guh" and "kuh" sounds - and was really happy with Kira's language development. Interesting factoid - she said that at Kira's age (almost 3) 10% of the child's vocabulary should be verbs. I didn't know that - I need to think through Kira's words and see if she's there.

Kira's current therapists feel that there is a chance that she might not qualify for PPCD (our 3-5 program). She may not be "delayed enough." The therapists at the clinic agreed and offered me lots of suggestions for what we can do if she's not in PPCD. Her geneticist suggested letting her stay up all night, the night before the assessment. ;)

The geneticist also said that if she does qualify for PPCD, she thinks we should do a few months in the program and then transition her into a typical pre-k. I'm not sure what our options are with the school district, so I've got some work to do.

AND Kira totally passed her hearing test!! No fluid in her ears! I was so happy.

Good day all around and I'm so thankful to have access to such great resources. And now I'm going to bed.