Halloween in December

No, I didn't dress her up like this for fun. She asked for each piece of her costume by name, thank you very much. Bug! Dress! Wings! Shoes! Hat! (The hat didn't make it very long)

Merry Christmas, all!

Not going in the Christmas Cards...

Hello, police? I'd like to report a toddler perched on a table...

Zebras and basketballs

Our Lil' Ladybug

Tunnel vision

Lost in the corn maze, we were. But we kept finding tunnels so it was aaaaall good.



To me, a land surveyor, a 24" CPP (corrugated plastic pipe). To Lili, a TUNNEL!!!

E! A! G! Lili! E! Sssssss..

Lili and I like to hang out on fall Sundays and watch the Eagles whenever we can. Well, I was wearing my Eagles t-shirt yesterday and she started calling out the big letters - we teach her letter sounds and names, and the letter L is an especially tough one, so I usually say, L, like Lili. So, the Eagles chant is now, and forever will be,
E! A! G! Lili! E! Sssss! Eagles!

Fired up

We had the second meeting of the Centre County Down Syndrome Society today. I am blown away with the enthusiasm and ideas that are starting to come together from our little group. There are quite a few families in the area; we are just reaching the critical mass that is needed to organize events like a buddy walk or advocacy campaign. It is inspiring to be around such a great group of people, and we're already making a difference.
We were told a story of a recent visit to Pizza Hut. Our friend was gathering the kids in the car when her sister came out with a look on her face...apparently the 'manager' of the restaurant was getting a series of phone calls from the same person during the lunch rush. After telling the caller again that they couldn't call during the busy lunchtime, she hung up and said something like 'what, do they have down syndrome?' Appalled, her sister told the 'manager' how inappropriate her comment was.
After our meeting, our friend made a call to the National Headquarters of Pizza Hut and passed along her experience. The regional manager called her back only hours later and told her to apologize to our entire organization, and that there are employees of that very restaurant with Down Syndrome. Apparently there had been issues with this 'manager' in the past, and this conduct was inexcusable, so she was
FIRED.
How's that for instant karma?

Close call

I just barged into Lili's room, armed with the dreaded late-night cup (that we so thought we were all done with), marched two-thirds of the way across the room until I could finally see the chair against the wall, and did not see what I expected to see. You see, usually in this situation, Sara would be sitting with Lili as I prepared the demanded cup and brought it upstairs. I would then tiptoe into the room and Lili would decide which one of us was to join her for the midnight snack (lately I've been getting the call more and more, to my whispered 'I win!').
But the chair was empty. So I whirled around, and there was Lili in her crib, sleeping peacefully. Bad dream she had, I guess. I tried so hard not to start cracking up right then, and snuck out as sneakily as I could sneak. I had a glass of water for Sara, too, so I brought it into the bedroom and had a quiet laugh.


On another note, we went for a hike on Saturday to pre-celebrate Sara's birthday, only to be turned back by the signs that be.

So we said, 'Fine! We'll find another lake to walk around!'
And we did.

Crunchy

One of our good friends likes to call us crunchy people who live in the wilderness. I take this as a compliment, however it is meant...

We're not living in a straw-bale house, off the grid, with composting toilets or anything (yet) but we do try to live relatively lightly on the land and keep our bodies free of toxic stuff, etc. (as Americans go, anyway).
This kind of stuff became even more important as we were thinking about having kids, and yet more important when Lilienna was born with that extra little chromosome. I get more and more questions from friends on these kinds of things recently - maybe this stuff is catching on? I wanted to throw some of how we live out there - feel free to laugh, ask questions, or give us some fabulous advice... ;)
We buy organic as much as we can. Probably three quarters of the food in our house is organic. Most people either say 'what the heck is organic anyway?' or 'isn't that really expensive?' when this comes up. Pretty much, organic food is raised without synthetic pesticides, etc. - here's a USDA brochure that goes into a little more detail. And yes, it is more expensive at the grocery store, but I think we even that out by belonging to Tait Farm CSA (Community Supported Agriculture) where we buy a share of organic vegetables from a local farm and pick them up every week. Man, are they good, and if you do the math it's a lot cheaper than buying the same conventional produce at the grocery store. I've felt better since I started eating organic, and I'd like to think that Lili has thrived eating mostly all organic food. Check out this site to find a CSA (or farmer's market, crunchy food store, etc.) in your neck of the US wilderness.
We eat gluten-free, which isn't crunchy by itself, but it makes for a way of eating that I think is much healthier. We eat very little highly processed food - cooking is a bit more work than, say, frozen dinners, but it's a whole lot yummier too. Eating GF means you have to 'know your ingredients', so the simpler, the better - which leads to buying more locally made food.
We bought an old house in an old village that needed a bit of love rather than a new one in what used to be woods. Of course, that means more work for us to make sure lead paint and drafts stay away from everyone, but I love our house and the stories it tells.
Well, we're really not that crunchy, because I'm not coming up with a laundry list of other things we do to reduce our footprint. I guess we've changed light bulbs to compact fluorescents, and we drive a car that gets pretty good gas mileage; but I've got a bigger list of things we need to do on this front: insulate, compost, buy wind power, go solar...
Any other crunchy wannabes out there?

Crunchy Lili picking out some mums at Harner Farm

Lili's newest word

Hugs!
With arms outstretched.

Love it.

The Man

Some kids get it. It was neat to find an article like this from near where we live posted out on the blogosphere. I saved this link a while ago, and I forget where I found it - but check out this article.

Turtle-K

Lili's slightly frantic version of bits and pieces of the alphabet, for your viewing pleasure...

Knoebels!

Lili and Daddy took a trip to Knoebels on Wednesday to meet up with cousin Henry and his posse. Mommy had to stay home to fight off a nasty bug, so a return trip is definitely on the agenda. Lili had a roller coaster of a time - we kicked the trip off with a meltdown (the kiddie ride with the flamingos and fire trucks was apparently not cool).
Things started to calm down, we found some grub, peace and normalcy appeared to be returning to Lili-land...

Then a REALLY LOUD (kid's?) band started playing right next to our little oasis of fries and avacado. So we thought we would try a calmer ride - maybe a pleasant jaunt through the woods on a little train...Lili loves trains, right? ... right??...

Luckily, Pappy saved the day by spotting a quiet gift shop where everyone regained some composure and had plenty of stuffed animals to talk to. The turning point of the trip then took place, as Lili spotted a little playground ball in the gift shop. This little rubber ball proved to be the entertainment hit of the night for our little heroine. She had a fabulous time the rest of the evening playing with Grammy and Pappy and anyone walking by. Daddy even got to check out some of the big kid rides (the Phoenix is a great wooden coaster - always ranks as one of the top ten in the country).
Darkness fell, and Lilienna crunched her pretzels into the night and slept the whole way home. Good times.

Thanks again to Aunt Carrie for the photos...

CCDSS website

The website for the Centre County Down Syndrome Society is gradually coming together - it's to a point where I'm going to start sending people there to check it out... :)
Stop by and let us know what you think! I know I would have been thrilled to find something like it two years ago...

Chuckin' rocks

To quote cousin Henry - "Did you see the size of that splash?!?"
She would applaud herself for most of the good splashes. This one got a standing ovation from Daddy.

Fun times at the creek - Lili loves throwin' stuff. She's got quite an arm, so throwing rocks in the creek is about as constructive as it gets. Her glasses flying across the living room, on the other hand...

Expectations

I have big plans for Lili. Not really plans, exactly - I envision wonderful opportunities and experiences for her. Don't worry, we won't be forcing her to do things she doesn't enjoy. But, I truly believe that I will not deny her any opportunity to try something if she wants to. Society comes up with a lot of "well, kids with Down Syndrome won't do such and such" or even better "Downs people aren't very good at this and that" (I'll rant about person first language another time). All the parents I have met have generally agreed that they want the best opportunities for their children, whether they have special needs or not.

But I challenge you all - do we really give our kids every opportunity? Do we hold them back just a little, saying to ourselves 'maybe when she's a little older' or 'well, he's not so good at that kind of thing'? I'll admit, I've been guilty quite a few times. I'm a clingy dad, but if I get up the courage to let her try something new, she usually blows me away with how well she figures it out. And she's 2. I'm a new dad anyway, so I really didn't have any idea how clever 2 year olds were at all. Little did I know she can climb all the way up into the seat of the bench swing and start swinging herself, or tell me all about her day: "sunscreen, outside, swing!, Jesse, play, the sun, hot!, splash, water, brrr!"
I got thinking about all of this while reading a great post called Was I ever wrong on a now-defunct blog by Michael Berube, author of Life As We Know It and fellow Happy Valley resident. These revised expectations are a perfectly natural, healthy way of reacting to the parenting instinct - we primarily want our children to be safe and comfortable. We don't try to underestimate them, we're just trying to be reasonable. That type of thinking is not exactly dangerous, but can lead you down a slippery slope - planning way too far into your child's future, assuming that they won't do this or might not do that. Forget that. I have no idea what Lili will be able to do tomorrow, but I'm not going to tell her what she isn't able to do.

Walgreens Rocks

For anyone who hadn't seen this yet - very cool.

Talking scribble on the remote-phone

This just cracks me up.

"Hello?
- insert deep conversation here -
Bye!!!"

Whoo hoo!!!

Wow! I won my first blogging award!

BStrong at Down Syndrome Life has given me a Blogger Reflection Award:



B was the the first dad blogger I came across. I was just starting to wonder, 'why do moms only do these blog things?' when I landed on his blog. What a great feeling, to see another dad putting his thoughts out there. The best part was, even though the name of his blog is Down Syndrome Life, much of what he writes about is just normal stuff. His beautiful daughter has DS, but it doesn't define who she is. His open letter post is a fabulous resource for anyone who has been in a situation where people just don't know what to say or do.

I'm kinda new to this whole blogging thing (well, at least the whole commenting thing), so I'm still lurking on some of the great blogs out there. I am supposed to pass this award on to five bloggers - luckily I did some research and I don't think I need to come up with purely un-awarded bloggers (don't you wish you knew that, B?) According to the originator of this award,

"this award should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy... of knowing them and being blessed by them.
"This award is for the best-of-the-best so consider who you pick, carefully. This award should not be given to just anyone. If you're going to do the award don't just write a few words and slap it on your blog. Write real thoughts about these bloggers and what they've been to you, and if the bloggers you pick have already been given the award, don't be afraid to give to them again. They deserve it as many times as it's given."

Here's what BStrong had to say about me:

Archie at Lilienna one of the few dads who blogs about having a child who happens to have Down Syndrome is starting a support group in his community. He is deserving of this award not only because he is a blogging dad and starting a DS support group, but because his daughter Lilienna wears glasses just like my Amanda and I’m a sucker for that sort of thing.

See dads, all you have to do is make a blog and you get an award!! And buy your kid some glasses. And to be fair, some of our friends in this area are doing a whole lot more work than I am to start our support group.

B, I really appreciate you thinking of me. As you have said, we blogging dads have to stick together!

Now for my five lucky recipients:

Rebecca at Just a little bit of something extra. I began blogging simply to post news and pictures of Lili, as our friends and family are spread all over North America. Not too long ago, she stumbled upon my blog and has introduced me to so many things: the fabulous book Gifts, to which she is a contributor as well as webmaster; the blogosphere in general; and her precious daughter Miss E.

Kim at ramblings of the bearded one. I know, he already has one. But it says you can get more than one, I swear. And, like Kim, I think it's funny in a nice way for him to get an award for being a Godly example. Seriously though, Kim is an incredible father and a great writer. I have fallen over laughing at some of his comments and posts.

Emily Elizabeth at Lovely and Amazing. I know, I know, I'm really copying now. She was one of BStrong's recipients along with me. Her blog is packed with fabulous links and information, and until her template imploded (sniff) she had the coolest three column setup to pack in all of those wonderful sites. She is a great advocate for her daughter Emma Jayne, and her stories and views have helped us and I am sure many others, sidebars or not.

Alice at Words About Words. Alice happened upon Lili's blog right when we all needed a kind word - right before her surgery. She writes about anything, especially her beloved granddaughters. As a fellow night owl, I have spent a few late nights perusing her blog and its subtle beauty.

And to complete the loop, Jeff at Big Dawg Tales. Jeff tagged B, who tagged me. You're it! Jeff is an inspiration to me because he is a tireless advocate for his son. He helped start a group for dads in his community, D.A.D.S. (Dads Appreciating Down Syndrome). And, he likes to talk politics without digging a trench on one side or the other of our oddball two-party system. Don't worry Jeff, no more mushy stuff.

And now, for those of you who aren't getting your third or fourth award:

1. Copy this post.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Place the award icon on your site

Round 2 is on...

Please vote this round, all scores went back to zero today in the AmEx competition a few posts down - the Awareness Can Build a Family project did very well in round one, and this round is only five days - spread the word!
(Bonus points - see if you can find my rant to a clueless commenter - hehehe)

Cracking herself up

I wish I could talk to the grass and crack up laughing as well as Lili does. I really wish I knew exactly what she is saying that is so. funny!

Calling all AMEX cardholders...

Please check out this competition and cast your vote - the Awareness Can Build a Family project could raise a lot of money with your help - simply with your votes.

Playground fun

Lili's a big fan of swings. That's a bit of an understatement, but I'm not sure how else to put it.










I started this blog mainly to share pictures of Lili and keep family and friends up to date with her life. As we start putting together a local down syndrome support group, I hope some people we may not have met will find this blog and have a glimpse into what our life is like now that she's two. Lili is our pride and joy; she puts a smile on my face many times every single day.





Some things have taken a little longer than they may have with a 'typical' kid; but she's walking, talking, using the potty, etc. etc. To steal a line from Rachel of Signing Time, Lili will do what Lili will do when Lili is ready to do it.









We've been through more medical issues than some families, and less than others. She's had a pretty full life so far for a two year old, I'd say - Lili has been a little glowworm, had surgery for acid reflux, enjoyed birthday parties, been across the country and played in the snow.






There are so many other great blogs out there too - I've got a few great ones in my links section to get you started if you're curious. Careful, they can be addictive. The neatest thing I've noticed in some blogs is a shift in focus away from DS toward everyday life. Down Syndrome is just a tiny part of who Lili is - it was the dominant thing on our minds for her first few days, and has become just another characteristic, like brown hair or a button nose.

Thank you Soeren

Wow. Exactly what we all wanted to say, but didn't quite know how to say it.

This is from a few months ago, but it's new to me. Soeren Palumbo gave this speech to his high school and has since addressed the Illinois Senate. I won't post the transcript, but just this quote: "I hope that someday someone will love you as much as Olivia loves me."
Good stuff.

Birthday pic fix

A card from Conti! Yayyyy!
More photos later - we promise.

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.