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Another Breakthrough

Nicky has a tendency to only say one syllable of a two or three syllable word. For the longest time water has been wa-er. But tonight in the bathtub M.E. got his to say water very clearly, with a very strong 't' sound. Yay! Nicky!

Nicky's New Skills

Nicky now has the ability to produce tears at will, big drippy ones, and figured out how to use them for maximum effect to get his way. We were snuggling on our bed when Nate and worked his way in between us. Rather than hitting or pulling at Nate, Nicky stuck out is lip and started to cry.

He's also figured out the Toddler Rules. Everything he sees is now "mine." We've taught the big kids to trade rather than taking things out of his hands. Now, if you have something he wants, he'll first try yelling "mine", then if that doesn't work, he'll bring you something and say "trade".

And he's using a lot more two and three word phrases such as:
Help me (and the constant variation "help me mama")
Bob DVD TV
I don't want to (picked up from school)

I am so pleased with these developments. For too long he was so passive, not getting upset when something was taken away. And the trading really shows the start of reasoning.

Another FO - Needle Felting

Forgot about this one in the Christmas rush. I made this for my neighbor who took me along on her Chico's spree.

And now for some finished objects

This year for Christmas I made a bunch of felted oven mitts to give as gifts to friends, family, & teachers.






For my Mom & Knittalk swapmate








For my neighbor an oven mitt & pot holder










For M.E.'s teacher who's an Ohio State Alum













A whole batch, the orange was for Nate's teacher a Florida State Fan

Pregnant

No, not me. But the mother of a friend of Nate's who was over a few days ago. S told me and said his mom was "only half a month pregnant." As a knitter, I think "wow another baby to knit for." As a infertility patient with multiple miscarriages, I think "oh, no, I hope she's really not told him this soon." As the mother of a child with DS, I wonder what sort of prenatal testing she'll do.

The ACOG recently came out with new recommendations for first trimester screening for DS and other birth defects. I have very mixed feelings about the recommendations.

"Detecting problems earlier in the pregnancy may allow women to prepare for a child with health problems."

Yes, this is true, but, how well can you truly prepare for the birth of a child with a disability? As awful as the days after Nicky's birth were they were made easier because we had a child in arms to love and care for. Life with Nicky is more "normal" than it is "abnormal" he's really a typical kid in most ways.

"It also affords women greater privacy and less health risk if they elect to terminate the pregnancy."

Here's the rub. Studies have shown that the termination rate for babies diagnosed with DS prenatally is as high as 90%. I don't know if it's self selection in that those who wouldn't terminate don't get prenatal testing.

It is much harder for a woman to abort a pregnancy at 18 weeks, both physically and mentally. We did screening with Nicky at 17 weeks, by which time he'd been kicking for 4 weeks, I was firmly attached. The reasons we didn't go ahead with an amnio were that we knew we wouldn't abort for DS and fear of miscarriage. My triple screen results came back with a 1 in 60 chance of DS. The genetic counselor already had papers filled out for an amnio and was very surprised and a bit put off that we didn't get one.

I do hope that these new recommendations could be looked at as a chance for educating the public about what life for a child or adult with DS is really like. Hopefully, the choice to terminate isn't made out of fear or ignorance. Since meeting Nicky a few friends have told me their views have been changed about DS. By writing this blog hopefully, I'm doing a bit more to change minds.

Happy Birthday!

Christmas eve was also the last Sunday of Advent this year, so we lit the Advent wreath at our Christmas Eve dinner. We were talking about Christmas being the birthday of Jesus. Nicky started singing "Hap Day You" which is Nicky's version of Happy Birthday to You. The last time we sang it at home was in October for his Dad. I think they've sung it in school a few times. But I was really pleased and amazed that he could put it all together and sing the song.

Happy New Year!!!

Somehow, I didn't get around to taking a picture for cards this year. I guess the kids were never wearing something cute on the same day. In past years, we had a picture of all three taken at the annual Down Syndrome Association of Atlanta Christmas party with Santa. This year, Nate did his first reconciliation on the same day as the party so we weren't all there. Anyway, a few days before Christmas I finally got around to looking through pictures, couldn't find one I liked of all three together so I made a montage. It took a bit of work because iPhoto's card option doesn't allow using more than one picture. But the photo book option does. So a few trips from a book, to preview, saving the file as a jpeg, and back to iPhoto, this is the result.

Happy New Year Everyone!

He Really Didn't Want to Take a Nap, Did He?

I put Nicky down this afternoon, didn't hear anything out of him for about 45 minutes, went to check and found this...

Finished Object - Socks

Size 13 Men's Socks for DH

Yarn: ColourmartUK Fingering weight cashmere

Pattern: my own design top down, broken rib stitch

Needles: size 1 Suasan Bates double point

Start date: May 2006

Compeletion date: Novemeber 2005

Alumni Magazines

I really just need to stop reading the darn things, or at least the "Notes from Alumni" section. About 16 years ago I graduated with an MBA from a top business school. (At the time it was flirting around 6 now it's in the top 5). Along with my diploma, I receive the alumni magazine semi-regularly. A couple of weeks ago, it came. In the notes section was a blurb about a classmate who's now VP of Marketing and owns part of a minor league baseball team. Now, I'm now where near being a VP of Marketing, or anything else. Still changing diapers, etc. Logically, I know that only those who are doing well right in, or what's written is a bit inflated.

Of course, I could write something that sounds really grand....

After leaving Applied Biosystems some years ago, I've become president, no make that CEO of an accessories design & manufacturing firm. (O.K. so, I occasionally, sell a purse or scarf or two). And I've been volunteering my marketing talents for fund raising in several non-profit organizations (selling Boy Scout popcorn and Sally Foster gift wrap.)

Or, I could do what 95% of my classmates do and not write a thing.

Wishes

A couple of nights ago at dinner we were talking about wishes. M.E. was reading Children of the Lamp and The Blue Djinn of Babylon, stories about Djinns, or Genies. A discussion of what we'd wish for ensued and the kids said the typical things, video games, etc. Kim wished that Nicky didn't have DS. M.E. commented that you have to phrase your wishes very carefully, as the genie might take away Nicky's DS and give him something worse, not make him a typical child.

The funny thing is wishing away DS didn't enter my mind at that moment, rather I'd love to have a sister for M.E. When Nicky was born, I heard other parents say they wouldn't wish away their child's DS. I couldn't understand this thought. But now, having DS is such a part of him, I just can't imagine him any other way. Does this mean I'm finally starting to accept it?

'Mo 'Tar Mama

One of Nicky's birthday gifts was an Elmo guitar, he loves playing it. More importantly he's saying a three word phrase "mo tar mama" or Elmo guitar Mama!

Flying

When Nicky was born Nate's favorite book was Flap Your Wings. It's the story of a pair of birds who come home to find a strange egg in their nest. They are quite sure it's not their egg, but they keep the egg warm, feed the baby that hatches and teach him to fly. The baby turns out not to be a bird at all.

On one of the many nights we sat at Nicky's bedside while he was in the NICU, Kim said "I feel a little like mother and father bird, we have this creature in our nest, he's not quite what we expected but he's in our nest so we have to feed
him and teach him how to fly." Suddenly I knew that everything was going to be all right. And it has been.

Fear

I've been thinking about this post by Dr.Couz, since I read it. I'm not sure why it bothers me so much. The sentiments she expresses aren't any different than most women feel. And from what I've heard in her blog Dr. VitaminK is a caring and excellent doctor. I guess it bothers me that a medical professional is expressing the opinion. But, it really shouldn't since she is first ,and foremost a woman, just expressing feelings most women would express. I certainly was afraid and didn't want a disabled child. I was 40 when Nicky was born, our AFP results came back with an elevated risk for Down Syndrome, 1 in 60 vs. 1 in 80 for a woman of 40. The odds were with us, or so we thought so we went ahead. But in the back of our minds was the possibility of DS. I guess I was more afraid of an Amnio than DS. The day Nicky was born was the best and worst of days. Life is about risk and some are just worth taking.

Thank you Lynn Johnston

I've loved the comic strip For Better or Worse since I was in high school (a long time, I know). And love it even more since the character of Shannon came along.

Parade of Finished Objects

I finished several things before we went on our trip and while on it.
First a hat for M.E. to go with her coat. She wanted a plain hat with "that smooth stitch" no cables or anything interesting.

Of course, Nicky thinks it "mine":

Another Chatelaine Shawl in Louisa Harding Kimono Angora. This is my own design based on a pattern from a Barbara Walker Treasury. It's knit from the top down. I wasn't quite sure how to end it, but was trying out short rows and thought it would make a neat shawl to have the points of the pattern diamonds as the edge.

I added beads to the cast-off edge. The edge was just a simple knitted cast-off instead of the knit 2, knit 2 together because I was afraid of running out of yarn, ended up with about 10 yards left.

Next the Hexagon bag. Ages ago, I was playing around with knitting quilt shapes, at the time I didn't know it could be called modular knitting. Each row of hexagons were knit around, not intarsia. It has an i-cord loop closure and a knotted i-cord "button". Knit from three colors of Patons Classic Merino. Only trouble was two different batches of winter white, one felted much better than the other.

Finally, a hat scarf combo out of Elann Peruvian Alpaca based on a pattern from BW's first treasury. Started the scarf sometime last fall, decided to add a hat.

Modeled again by M.E.

How Taurus am I?

You are 67% Taurus

How Taurus Are You?

Literally

A couple of nights ago, I told dear son #1 to go clear the Bionicles off of his bed in preparation for bedtime. I went upstairs a few minutes later to find this:

Of course, Nicky, the camera hog, saw me with the camera and wanted to get in on the action. Here he's showing off one of his new skills - Dressing himself...In my swimsuit top.

Hit Over the Head

Every so often I get in a funk about Nicky, focusing on all he CAN'T do instead of what he CAN, who he's NOT instead of who he IS. This one started on our visit to Michigan, we saw my brother & family. Their oldest is 3 days older than Nicky but miles ahead. Then last night, we all went on a bike ride down to our neighborhood pool & playground. There was a neighbor there with her twin boys who are about Nicky's age. Watching those boys I was just so sad. Anyway, came home put everyone in bed and was reading mailing lists and there was a note about a young man with DS who died this afternoon. Whomp, just a reminder to focus on what we do have and just enjoy what is, not what "could have been".

Nicky can:

• Scoot everywhere on his bottom,


• Sign or say more than 100 words,


• Put together 2 and 3 word sentences (e.g. "Mommy no sing" everyone's a critic <sigh> ),


• communicate his needs & wants,


• Take his clothes off and put some on,


• Follow directions when he wants to,
  
• Throw an object hard & fast,


• charm the pants off everyone he meets...and a million other things

In other words be a "normal child" whatever that is.