Welcome

Well, the organization we are starting is beginning to come together, thanks to many people who have been generously giving their time. We have a name (the Centre County Down Syndrome Society), a P.O. box, and the beginnings of a website. I wrote a welcome message for the website for parents who have received a post-natal (after delivery) diagnosis of down syndrome, as we had. I'm posting the current version below; comments are welcome...

First of all, please allow us to say what many people may have forgotten to mention since you learned of your child’s Down Syndrome: Congratulations on the birth of your beautiful baby! Most of us learned about our child’s diagnosis a few hours or even days after birth from a nervous genetic counselor or physician with good intentions but only a few sheets of information printed off the internet. So congratulations again! There are some fabulous resources out there, but Googling them all may not be what you need right now. Please know that we here at CCDSS are all available to you whenever you feel you are ready to talk to someone, and hopefully we have compiled some good information for you to look over before you may be ready to meet us.

The most important advice for the first few days is this: you are allowed to grieve for your lost expectations, and you may go through all of the normal stages of loss: denial, bargaining, anger, despair, and acceptance. This does not mean that you love your child any less; you are simply now faced with a different path, an unexpected path. But be assured, it is an exciting, challenging, and beautiful path.

Raising a baby with Down Syndrome is more like raising any other child than it is different. Of course there are medical issues to keep an eye on, but basically children need love, sustenance, and clean diapers. There may be more trips to the doctor to keep an eye on things, but as that goes, know one thing: a positive diagnosis of DS in Pennsylvania means your child should be eligible for programs that will take care of many bills not even covered by private insurance. Sign up if these programs exist in your area. We would be happy to lead you in the right direction to find them.

Much of the current stock of literature on DS is a bit outdated. Even in the past fifteen years, advances in medical care have made the future for kids much brighter. There are people with DS getting married, holding real jobs, and going to college. We honestly feel that as long as we don’t hold our children back, they will be whatever they want to be. Ask lots of questions of your doctors. If you are not satisfied with their answers, keep asking or get a second opinion. Be open to finding a new pediatrician if need be.

You are not alone. There are many of us right in this area that have been exactly where you are. If you are not located in our immediate area, we are available by phone or email to talk to you at any time. There are thousands more who have been through this all over the world. The new resource of the ‘blogosphere,’ a huge network of web journals, may be one way for you to get information. There are a large number of ‘blogs’ on the internet written by parents of children with Down Syndrome, as well as message boards that are frequented by parents as well. Browsing through blogs can be very reassuring, as you can see how kids of all ages are doing, learn of the struggles and triumphs of families all over the world, and meet blogger friends that you never knew existed.

We know from experience that this time in your life is an absolute whirlwind. The dust will settle, and once you have a chance to shake it off you will see a beautiful child in front of you waiting for your love. We cannot predict where your path will lead, but we would love to help smooth the way for you.

Walking!!!

'nuff said.

Brags

I wanted to post on how Lilienna is doing; no pics this time. Stop reading now if proud parent bragging will sicken you.

She is, all in all, blowing us all away with how cute and funny and sharp she is. But I guess all parents say that about their kids, hmm? We're looking at preschools for a few hours a week when she's older to give her even more time around kids; she loves her friends. She has had such a great time at playgroups at the library and Music Together classes, and of course our soon-to-be-official play/support/hangout group (more on that in a later post).

We are lucky enough to have found an area with an amazing, if informal, support network. Some of our friends are working on creating an official affiliate of the NDSS to make it easier for other individuals and families in the area to find our little posse, and to help in organizing new local events like next year's Buddy Walk.

Lili's had her first few minutes of fame; a local magazine wrote an article about Strawberry Fields, her wonderful early intervention provider. We got to be the featured family. It was an itty bitty article about their 35 year anniversary. They mentioned the 'Mercury' Lili uses (basically a souped up touchscreen computer). She was introduced to this by a great research project Penn State is doing, using augmentative communication devices with very young children. Lilienna just eats it all up; she knows most letters and is very good at letting us know what she wants - either using picture cards, signs, words, or her computer. The computer is great, but I think she has gotten even more benefit from the little laminated velcro picture cards we have in big albums and signing (Signing Time on PBS is awesome). My take on the premise of the study is: why not start using other methods of communication as early as possible? Lili started using the computer at 10 months, and there are kids in the program now who started even younger. And we started signing with her when she was teeny. Her favorite signs now are "want" and "please". Insert favorite thing as necessary. (Being almost two, her favorite spoken word is n.o. No sign needed).

She pushed her stroller clear around Toys R Expensive today, saying 'walk, walk.' Whenever Henry comes to visit, she makes great progress with those big kid things.

Ok, sorry, enough bragging. Time for bed.

Prelude to camping

Lili loves Grammy and Pappy's new chair - oh yeah! We crashed their campground a few weekends ago and ate all their food, then went home and slept in a bed.
Don't get me wrong; I sleep like a baby in the woods. Literally. If Lili sleeps, I sleep. And she made a connection last year between air mattresses and infatable bouncy castles. Uh-oh.

Wow! We've experienced 'squishy face' before, but this is a whole new level! Pop-up camper screen mesh is extra strong I guess.

Good vibrations

This little guy, Gabe, is looking for some good vibrations for heart surgery on Tuesday. Click the button for his story. I read about him on rebecca's blog (check out her blogroll in the links section). Gabe's mom's blog is pretty amazing too. Best wishes Gabe!



To all the Moms out there, Happy Mother's Day!

Grasshopper!!!

Lilienna was having a fun old day at R B Winter State Park, throwing her toys around and whatnot, and then she decided that we had to meet her friend grasshopper (after telling us that a train says chew chew, for those of you who know sign language). So now you can tell all your friends about the 22 month old girl who happens to have Down Syndrome and her grasshopper. She never ceases to amaze us!

Portraits by Aunt Carrie

Swings are cool!

Slides are cool!

I also like eating my hand.

And standing up is tres cool...

Yay! Henry delivery!

Uncle Archie, you're silly.

Please turn off the sun...where are my glasses anyway?

Yes, I am the cutest little girl ever. You already knew that.

Glasses!!!

Noah wanted to be as cool as Lili, so he tried on some glasses like hers. Very dignified.

Mr. Incredible himself escorts Lilienna to dinner at the finest restaurant in town*







* (with highchairs)

HI!!!!!!!

First trip to the sandbox of the year, and the sun isn't quite so annoying and bright. Oh yeah, life is good.

Sno no mo

Winter fun while it lasted!

All this snow is now gone. Well, some is still around in the form of mud, but that doesn't really count. And more may be on the way tomorrow, but if form holds, it'll be 75 degrees next week. So, Lili had some fun in the snow while we had the chance!

And Jasper got to play around with Lili and his brother Cole. Yay!
Oh yeah, and the big faceless snow monster that was pulling Lilienna around.

Baby it's cold outside

Lili is trying out opera, right in the middle of dinner. If only we had an audio clip...











Check me out! Surfing!!!













Hmm...what trouble can we get into now?

Slackin'

Yeah, we're slacking. We'll get better, I promise. The dog ate the computer...or something. Yeah, that's it.
Seriously though, Lili's doing great; her new ear tubes are working wonderfully so far (knock on wood). We've passed the inevitable stomach bug around the house, but beside that, we're all happy and healthy. As you can see, Lilienna loves running around behind her little wood cart.

She also loves posing for pictures, especially for Aunt Kathy.

Cali

To put it mildly, Lili had a good time at the Monterey Bay Aquarium. Soooo many fishies!!!

I think she had as much fun with the people as she did watching all the fish! Aunt Kathy, did you see that?!?

Aren't they supposed to be dancing?

Away with the paparazzi! Release the hounds!