Friday, October 31, 2008

Now Who (Besides Us) Would Refuse This Child Candy???

Today was a very busy day. I took a half-day off work to go to the National Zoo with Samantha's class. Now, when I talk about Samantha's class, I mean Samantha and Bella. A huge orange bus for two 2-year olds, me, Steve, Bella's mommy, Bella's nurse, the teacher and two aides. Yes, there were 7 adults (plus the bus driver) and two children. And we had a blast! What a fun time! Bella's nurse had never been to a zoo before, so it was almost as much fun showing her the exhibits and the animals as it was showing two rather disinterested, over-tired kids. We got to see the underside of a sleeping panda, a hippo's dental work (or lack/need of), orangutan excrement on the sidewalk (narrowly missing passersby as it fell to the ground from a sky cable to the delight of another school group, I might add), snakes, crocodiles, elephants, prairie dogs, lions and other assorted creatures. Samantha and Bella went in costume, and were just the cutest little kids in the park! Bella was Dorothy from the Wizard of Oz and Sammi, well, you can see Sammi's costume in the photos above.

After work, Samantha got to go trick-or-treating. Last year wasn't as much fun because we had to take her around in her stroller, which was pretty hard to get up and down driveways and doorsteps. This year she walked a bit and conned us into carrying her a bit. And, man, did she score! Little Miss Cutie Pie managed to get people to give her lots of candy, none of them any wiser to the fact that Sammi doesn't eat candy. I hear some of you gasping. Nope, Samantha has never eaten candy. Actually, the only real reason she doesn't is just because we haven't tried. She spent so long not chewing anything that we were always cautious about anything we gave her. So when she did start chewing, candy just never made it onto the menu. Not like we delude ourselves into thinking she'll never eat candy--of course she will. We're just not offering it up right now. Besides, the bulk of the candy she got in her little bucket was peanut-based, and we haven't introduced her to peanuts yet, either (more Reeses cups for me!!!). I think I heard kids should start on peanuts around age 3. And I'm dying to give her a peanut butter and jelly sandwich!!!

On a related note, Samantha had her second dentist appointment last week. She'd had her first right around her first birthday. The dentist was shocked that her teeth are so nice--she kept going on and on about how beautiful her teeth are, and the fact that they're all in, except her 3-year molars which are on their way in (her gums are swollen and Sammi's been grinding a bit lately and chewing her straws back there). I have absoutely no idea how that dentist managed to get her to open her mouth, not only long enough to inspect it, but long enough to clean her teeth, too! Shocking! My little girl keeps on amazing me daily.

Thursday, October 30, 2008

The "Typical" Mistake

One of the first things new parents are told is not to compare their child with other children of the same age. Experienced parents, pediatricians and teachers will all say the same thing. Do Not Compare. Each Child Is Different. Each Child Develops Differently. This is especially true for parents of children with disabilities. When our children are born, we are only beginning the learning process. There's so much information to have to take in in such a short period of time, so many worries, so many plans to change and adjust (Holland, anyone?)...the list goes on. It's only natural to compare our children with "typically" developing children, as those are usually our only point of reference for how things "should" be.

Samantha has done very well for herself, since the time she was born. But, that being said, we have no other children to use as a reference and have very little exposure to other kids. This is a good thing! We did our research into Down syndrome and our blank slate outlook has helped us keep open minds about her development and the meeting of milestones. We celebrated when she would reach those milestones ahead of the posted averages.

So I guess I know why I'm still so surprised when I see her with "typical" children her age. Sammi and I had breakfast with my friend, Nicole, and her son, Ryan last week (Nicole, if you're reading this, please don't take this the wrong way--I'm just using you guys as a recent example!). Ryan and Samantha are only 4 1/2 months apart, but the difference is staggering. I left them that day feeling a bit sad, wondering if Samantha would ever speak in sentences, speak words that people other than myself and Steve could understand, be able to sit in the booth at a diner without falling off the bench onto the floor, talk about events that occurred in the past, talk about upcoming events with excitement, etc., etc., etc. When I see her with other kids, I wonder if the hugs and kisses she likes so much to give make her unusual. The "WTH!?!" reactions that the other kids have make me wonder if her affection is in part due to the extra chromosome (and a lack of boundaries), or if their reactions are just the normal reactions of kids to having a little stranger come up and hug and kiss them. Isn't hugging or kissing normal 2-year old behavior? I have no idea.

*sigh* I need a reality check once in a while, but I think the reality I need to get into my skull isn't the fact that my daughter is not developing at the same pace as "typical" kids; it's that I have to remember that Golden Rule about not comparing children. I know Samantha will do all of those things I was worrying about, but in her own time.

On another note, I LOVE and want Samantha's clothes, and LOVE to dress her. Sometimes I pick out her clothes the night before, just because it's fun.

Tomorrow or Saturday I'll post some pics of Sammi in her Haloween costume. :-)

Tuesday, October 21, 2008

Another Blog to Follow

I would like to take this moment to introduce you all to the blog of the Hill Family of Northwest Arkansas. The blog is written by Jay, the stay-at-home dad of 3-month old John, who has Down syndrome, and I'm hooked! His posts are insightful and beautifully written, and he has an incredibly wise view of his son's diagnosis for someone so new to this journey. Today's post is about unconditional love, something we all know so well. Jay, I hope you don't mind me highlighting your blog here!

Monday, October 20, 2008

Happy Birthday, Landon!

Nothing too much to say, but I love kids' birthday parties and wanted to share some photos from Sammi's friend, Landon's party yesterday (today's his actual birthday--Happy Birthday, Landon!). They played really well together, and tucked into some really, really yummy cupcakes from Georgetown Cupcake. Incidentally, Landon's daddy, CJ, waited in a line out the door and down the street to get those cupcakes!

Sunday, October 19, 2008

To Combat the Cold

Great Idea!
Originally uploaded by sammi's mom
Our apartment building has this rule where they need to wait until the temperatures have dropped/risen consistently to certain temperatures for a certain number of days before they can activate the heat/air conditioner. Now, this happens twice a year, every year. And it invariably occurs that in the fall we'll have 80-something degree days for a week, the it suddenly drops to 60 (with 30 degree nights) on the weekend, when there's nobody to switch the system over and provide heat, and it invariably occurs that in the spring the temperature will go up to 80-something and they shut down the heat and turn on the air conditioning then the temperature suddenly drops down to 50 on the weekend and nobody around to switch it back to heat. Well, we're in one of those weekends now.

I left Sammi in her heaviest fleece jammies this morning, but was worried about her little hands turning to ice cubes when she drank her milk ith breakfast, so Steve had this wonderful idea to stick a beer cozy on her straw cup (I know this isn't the most brilliant photo, but it's all I've got for this). No, he doesn't drink Miller Lite. As a matter of fact, he doesn't even ever drink beer at home, but we've got lots of the freebies he's gathered from bars over time, and finally put one to good use. I highly recommend it--Sammi's hands were just the right temperature when she was done! Maybe I should submit this to Parents Magazine in their "It Worked For Me" section. On second thought, perhaps not.

On the same note, we finally broke down and decided to get a portable heater for her room for this sort of occasion. Even though they'll probably turn the heat on tomorrow, we'll still need it again next spring and we'll feel more comfortable knowing that Samantha will sleep comfortably. Steve ran out and got it from Target right before she went to bed tonight--otherwise I would have put her to bed with a onesie and tights under her fleece.

Saturday, October 18, 2008

King of all Self-Advocates

Sammi with Chris Burke
Originally uploaded by sammi's mom
Today was the Down Syndrome Association of Northern Virginia's Buddy Walk. Seriously, the weather could not have been nicer or more of a carbon copy of last year's Buddy Walk--blue skies, cool, sunny... And Samantha was an absolute DOLL the whole time, going napless from morning until we got in the car after 3pm. She was full of hugs, smiles and more hugs today.

The calendar was a big hit, and became totally sold out (as I knew it would), and I'll need to order more from the printer on Monday. I haven't even purchased my own copy yet!

Our Buddy Walk featured Chris Burke as Grand Marshal, and he performed with his band. Chris Burke, as many of you know, played Corky in the hit TV show, "Life Goes On", many moons ago, and travels across the country and Canada on speaking engagements and performing. He is definitely an inspiration to many parents and self-advocates, and I was really pleased to be able to have Samantha's photo taken with him at the end of the day. In this photo, she was leaning in to hug him (I told you she was huggy today!). I was little sad that I was so distracted for much of the day and couldn't really hear or see Chris' band. I had several friends come to join our team, and wanted to be able to spend time with them since I rarely see them, but unfortunately I wasn't even really able to do much of that, either.

At the moment I am so completely exhausted that I'm not even sure if anything I've written makes any sense, so I'm off to bed before my eyes completely cross and my head drops onto the keyboard with my nose resting on the hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

Monday, October 13, 2008

An "Accident"-Prone Week

I don't know what it is lately, whether it's the quality of this particular batch of diapers, us possibly giving Sammi more liquids than usual, or just some sort of gross neglect on our part, but we've had an awful lot of very wet, gotta-change-clothes-and-bedding incidents. Okay, so one of them was totally my fault when I took her out of her bath the other night, put her jammies on and completely forgot to put a diaper on her before bed...(c'mon, don't tell me none of you have ever done this!!?? Please?????)

The three of us drove up to Jersey this weekend to visit my folks on the farm. One of their "neighbors" (in the country, "neighbors" is a relative term, and generally involves a car trip) was having a bonfire party. We really couldn't have asked for a more perfect night--bright moon, twinkling stars, cold enough to wear jackets, but definitely not uncomfortable. We kept Sammi up way past her bedtime, but she had a great time! Of course, about mid-way through I set down my very delicious hamburger to pick her up and adjust her position in her chair and discovered that she was soaked. Completely soaked. Had to abandon the hamburger and send Steve scrambling back to our farm for a change of clothes. *sigh* But the party went on, and I made up for the lost burger with an excellent (and huge) piece of pineapple upside down cake. Not a problem.

Steve and Sammi danced to BeeGees, Tom Jones and Van Morrison in the barn, and you can see from the photo that Samantha thought it was fun.

Ah, but back to the topic--driving home to VA yesterday yielded yet another gotta-change-clothes accident. I just can't figure out what we're doing wrong. Poor little thing hates to be wet, but who can blame her?

Monday, October 6, 2008

Get It While It's Hot!!

Finally, the link for the 2009 DSANV calendar is up on the DSANV website. I had NO idea how complicated the logistics of selling this thing would be. It seems that it will work out best if I continue my involvement by handling the ordering/shipping process myself, too. It'll mean making multiple trips to the post office and waiting for reimbursement checks (for shipping costs), but it'll be worth it. And I have a need to be in control. :-) I'll keep this post short and sweet, and leave you all with the link for ordering. Happy Down Syndrome Awareness Month!

To order:

Saturday, October 4, 2008

Sleeping Beauty

Sleeping Beauty
Originally uploaded by sammi's mom
Samantha, sleeping at my company picnic today. She was very social, but kept trying to kiss and hug the other kids that were there. Actually, she nearly knocked down the CEO's daughter (who is the same age) while trying to hug her. Not the way to get a raise. :-)

True to form, Sammi wouldn't eat anything at the picnic. She's in this stage right now where nothing can pass through her lips except waffles, cookies, yogurt, chicken nuggets, goldfish and hummus sandwiches. Nothing else even gets a chance. She clamps her mouth shut, shakes her head, puts a very contrary little look on her face, and says, "nooooo." It's so exciting when we can get her to open her mouth long enough to put some new food in. Most of the time, though, she spits it right back out again. Occasionally, as with the spaghetti-o's I gave her the other day, she'll realize that she actually likes something. Thank goodness for daily vitamins...

Friday, October 3, 2008

A Big Thank You!!!

I didn't want to commit to the "31 for 21" blogging this month, as 31 posts for me during Down Syndrome Awareness Month would really be too much. I don't think I have 31 days worth of things to say, to be honest. :-) But here's 2 out of 3 days so far in the month of October.

In my last post I mentioned the DSANV calendar that has finally arrived. I'm still obsessing about how to sell it. The details are all getting too complicated (how to get the link up on the DSANV website, who the orders will come to, who will ship them out,etc.), and I think I'll just make it simple and do the orders myself. I'll contact the web guy today and make it happen so I can get it out to any of you who are interested!

Also, in my last post, I neglected to thank the wonderful photographers who had donated their time and efforts to the calendar project and created the gorgeous images that are featured. I know that only one or two of them possibly read this blog, but I definitely want to mention them all to my readers (you local folks may want to look them up!). Participating were:

Will Schermerhorn (who has been instrumental in getting the word out about Down syndrome awareness to the public--have any of you seen the PSA that the NDSS has put on their website and given to movie theaters across the country? Many fellow Ds bloggers have had it on their websites recently... Check out his website for lots of amazing things he's done that I'm sure you're already familiar with!

Susan Braswell of Susan Braswell Photography

Lisa Hill-Sutton of Lisa Julia Photography (an absolute doll to work with!)

Diana Adams of Studio Diana

Liz Vance of Oh Baby! Photography

Amanda Pagon of Apple Pie Photography

Rebecca Weiner of Rebecca S. Weiner Photography

Karen Becker of Karen Becker Photography

Ruthi David of Rdavid Photography

Adam Donohue of Red-letter Photography (who joined the group at the last minute and generously picked up the remaining sittings!)

Marie Windt of Marie Windt Photography (who has graciously agreed to photograph teams at our Buddy Walk in a few weeks!)

Thank you all, and if you're reading this, I'll be contacting you again in the new year to help usher in 2010!

Wednesday, October 1, 2008

The 2009 DSANV Calendar Heralds the Start of Down Syndrome Awareness Month!

For those of you who don't already know, October is Down Syndrome Awareness Month. Yes, it's also Breast Cancer Awareness Month and probably some other sort of awareness month, but for the moment, Down syndrome is what I'm most aware of and what I'd like more people to be aware of.

I finally finished working on the 2009 DSANV calendar, and the finished copies have been delivered to the DSANV office. It's really beautiful, and is an amazing awareness piece that I'm hoping will have a broader audience than just the local Down syndrome family community. The printer has asked permission (and permission was granted) to print up additional copies to use as samples whenever people inquire about their calendar-printing services. Since the calendar's more of a celebration and awareness item, this usage will increase the audience to include many people who never would have purchased the calendar in the first place, so having it given out as a sample is a very valuable service to our community.

Until after the Buddy Walk, the calendar will only be available for purchase in-person at the DSANV office (with checks or cash only) and at the Buddy Walk. After that, purchase will be available through the DSANV website ( via Paypal. Details will be posted there soon. Here's a small taste...

I'd love to post more, but you'll just have to get the calendar to see...!!!

By the way, to anyone who was wondering about the flash cards Samantha is using in the video in my previous post, we got them at Borders. You can google them, but don't use the term "flash cards"--try googling "Sesame Street Deluxe Activity Cards", and you'll find lots. I guess "flash cards" is just a bit too banal.