Walking

Tammy, Nicky is 4 so he should be walking, but he's not. Our second PT (one of the good ones) had some facts & figures. The median age for a child with DS walking is 2, so half of the kids are walking by then. And 90% are by three.

When Nicky was just pulling up at age 2, I held onto the 90% figure. Then he wasn't walking by 3, and then 4... At this point he's really close. He walks well holding onto our fingers. And he has a walker at school that he runs down the halls in and away from his teachers.

He was mobile relatively early, rolling at 6 weeks and commando crawling before a year. The early mobility may have hurt in that he could get where he wanted to without walking. At this point he can scoot on his bottom faster than I can walk.

He did have some pretty major sensory issues with his feet. It wasn't that long ago, if we picked him up by the arms, he'd put his feet out straight in front just like a gymnast on the still rings. Because of this he has amazing stomach muscles and strong arms from the scooting. Hmm, Special Olympics here we come!

I do know that he will walk when he's ready but as Jennifer said you wish you could look back from the future.

Things are better although, I think we're in for a battle with the school about Nicky's placement for next year. The lead teacher tried to tell me the type of program I want doesn't exist and then that we're not in the right attendance area.

Wallowing

I'm having one of those shoulda, woulda, coulda, what if? days where I dwell on how life could (or should be different). Anyway, I think it was brought on by a bunch of things...

We are starting to make plans for Nicky's next school year. Right now he's in a self contained special ed classroom. He's doing very well, but there are a number of very verbal kids in his class. I want him to at least try inclusion. But, his teacher says he doesn't talk much during circle time but will in one-on-one situations. If we put him in an inclusion setting will he shut down or will he thrive? I think there will also be a bit of resistance by the powers that be since he's not walking yet.

Wondering if he'll ever walk. I know he's made progress since last year but he still doesn't want to walk. Obsessing if we'd had a better PT in the beginning, if he'd be walking now. Of course, until recently, he'd tuck his legs under or stick them straight out in front rather than putting them on the floor.

No matter the school situation, I'll have 3 kids in 3 different schools. I know this would have happened anyway but this leads too..

Obsessing about the 3 miscarriages between Nate & Nicky. If I hadn't lost the first s/he would be in kindergarten now, the one chance to have 3 kids in the same school.

And finally, my family is planning a reunion for next summer. But they are planning it for the week before our school starts, when I'd have to register for the three schools. Getting a bit of grief about it. But part of me is relieved because my brothers have boys close to Nicky's age and my cousins do to. Seeing them is somewhat bittersweet.

Sigh, ok, enough.

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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!