Thursday, October 29, 2009
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!
Wednesday, October 28, 2009
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.
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!
Tuesday, October 27, 2009
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.
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.
Monday, October 26, 2009
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.
Friday, October 23, 2009
Thursday, October 22, 2009
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!
Wednesday, October 21, 2009
Tuesday, October 20, 2009
- 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.
Monday, October 19, 2009
The guys couldn't get TV reception in the house.
Sunday, October 18, 2009
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!
Saturday, October 17, 2009
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.
Your Mother. And Santa.
Friday, October 16, 2009
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.
Not one single shot of Derek, though. I'll have to steal some pics from the in-laws.
Thursday, October 15, 2009
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.
Wednesday, October 14, 2009
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?
Tuesday, October 13, 2009
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...
Your Mother. And Santa.
Monday, October 12, 2009
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".
Sunday, October 11, 2009
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!
Saturday, October 10, 2009
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.
Friday, October 9, 2009
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.
Thursday, October 8, 2009
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!)
Wednesday, October 7, 2009
Yet another thing I didn't know prior to Kira.
Tuesday, October 6, 2009
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?
Monday, October 5, 2009
Sunday, October 4, 2009
A little birth story preview. I went into labor on Thanksgiving. Kira was born early the next morning.
Saturday, October 3, 2009
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.)
Friday, October 2, 2009
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.
Thursday, October 1, 2009
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!