Sunday, August 16, 2009
Big week
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!
Friday, August 14, 2009
Down syndrome clinic
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.
Wednesday, August 12, 2009
Golden Advocate Award
The award: The Golden Advocate Award is given to bloggers who have gone above and beyond to educate and advocate for people who have special needs. It was created in honor of my daughter Sophia who has Down syndrome, but it is not limited to the Ds community as all special needs count. The recipient may be a self advocate or a loved one, caregiver, therapist, teacher, community member, etc. to a person with special needs.
The recipient of this award has demonstrated courage, strength, and wisdom, and has used their blog to show the world how amazing people with special needs truly are. Recipients of this award do not shy away from speaking out against ignorance, cruelty, or injustices related to people with special needs. They can sometimes be found making phone calls to elected officials, signing petitions, attending rallies, and blogging about issues that are important to our community. On most days they educate by sharing their everyday experiences with us, allowing us to see how people with special needs are more alike than different. They wear their advocacy hat well and the world is a more beautiful, diverse, and inclusive place because they are in it.
To accept this award: Simply accept it with the knowledge that your work is appreciated. Feel free to post it on your blog, or not. It's up to you with no strings attached.
I would like to pass this award on to Megan at Audrey & Stella's Playground. Megan is a fierce warrior mama and I'm thankful to get the chance to honor her!
Thank you again, Tara!
Sunday, August 9, 2009
this...oh and how 'bout some of that, too.


And here are two crazy children and Ted posing by the new blue door (pardon the messy painting on the handle/lock - we're putting in new hardware in the next couple of weeks. If you know us, you also know that it would look like that even if we weren't putting in new hardware in a couple of weeks.):
We attended the birthday party of beautiful Mia today. It was a great party! Mia's mom and dad did a wonderful job. The party was held on a very toddler friendly playground with a great pavilion - yummy brunch with delicious cupcakes and tie-dyed t-shirts for party favors. So much fun! (If it's ok with Mia's mom, I'll link to her party post when she does it.)
I've done some crafting, too. I made gift bags for Mia's gift and for cutie-pie Trevor (whose b-day party we had to miss). I also made Kira a pair of shorts out of the fruit fabric and Jackson another pair of jammie bottoms (like the ones he's wearing in the pic above) out of the striped fabric. They put them on and immediately covered them in chocolate ice cream stains. If I can clean them up, I'll post pics of those, too. So, anyway, gift bags (with books already in them):
The kids and I are starting to do letter-crafts similar to (and sometimes exactly like) the No Time for Flash Cards ones. First up, fine feathered friends:

We have Kira's first visit to the Down syndrome clinic this week. She's seen a geneticist since she was 3 months, but it's time to switch over. I'm a little nervous. She'll have her hearing tested and then we send those results on to the school system. I can't believe she's almost old enough to transition out of ECI and into the school system. Again, I'm a little nervous.
So, that's what's happening around here! Hope y'all had a lovely weekend!
Thursday, August 6, 2009
rock star
Jackson: "Kira that sounds really great! You should be a rock star when you grow up!"
Me: "Yeah, she really should."
Jackson: "She can be Kira Montana!"
An award!!

- Kam at The De Leons - I've known Kam for over 10 years and am so thankful to be on this motherhood journey with her.
- Tara at The Kristofs - a new friend, thanks to Kam, who shares a similar outlook with me on so many things.
- Beverly at Adventures of Homeschooling Noah - Homeschooling Mama to the handsome Mr. Noah
- Monica at Monkey Musings- Supermama to 4 including the adorable John Michael
- Brandie at Livin for the Love - Mama to 3 gorgeous girls and expecting a sure to be gorgeous boy - calmly handling it all.
Tuesday, August 4, 2009
whatcha been doing?
But today's a new day and I'm feeling Christmas-y! I think we're going to have a largely handmade Christmas which means I need to get a move on.
Anyone else going handmade this year? I'd love some ideas.
Here's what I'm thinking so far:
for my kids:
doorway puppet stage and puppets
felt board - I'd like to make a couple of character/prop felt kits to go along with some new books.
for Kira - doll clothes, blankets, etc. She's all about the babies right now.
for Jackson - some kind of detective kit - magnifying glass, note pad, hat - I need some more ideas here.
for my nieces:
I'm thinking about making little purses and filling them with these.
for my showing up any day now nephew - I'm crocheting a blanket.
for my little cousin who's like a nephew - possibly make some fun shaped crayons and some kind of art kit.
What else?? Help!
Also, my blogging/TMMO friend Mary Ellen gave me a lovely award and I promise to accept it officially in the next couple of days. Thank you, Mary Ellen!

