Why Our Bonds & Outreach Are So Important

Over the past 9 months or so I've been doing quite a bit of outreach (along with my local Sisters) to new parents who receive a Ds diagnosis, and to parents who receive a prenatal diagnosis. For the most part, I just listen. I hear familiar (and some times not-so-familiar) stories, beliefs, fears, and joys. Many times I also answer questions - mostly about Sheridan (and, of course, for those families who are interested I always have pictures to share - he's so flippin' cute that it quickly becomes evident to the families that everything will be ok).

I have truly loved meeting new families, and helping them along that journey from uncertainty to hope. From fear to peace. Some folks' journey is longer than others, some have a meandering path and others have a straight and narrow one. No matter what the journey, I've come to love and embrace it.

My only hope is that through our local outreach, and through blogging, is that we are able to help even one family. Just one family turn the corner from sorrow, regret, helplessness, and grief, to embracing their child who is truly the love of their lives. Toward acceptance, hope, and happiness.

That's why I love this report... a simple testament to how impactful our experiences and stories are to those families who happen by our blogs, or our shopping carts in the grocery store, or our blanket in the park...

$19,889.19

That's how much the Saving Sofia Crab Feed & Silent Auction raised to date. And essentially the only money coming out of that is for the cost of the crab, the liquor license, etc. Which means that The Sanchez Family currently has $17,838.19 in the DSIA Saving Sofia Adoption Fund. Every penny of that goes to her adoption.

So. Freaking. Cool.

Doing Our Part

Many of you - even if you are reading my blog for the first time - have likely heard about little Sofia and Jennifer & Hector's journey to adopt her from an Eastern European orphanage.
The moment Jen announced their plans to adopt, the sisterhood jumped into action. The Sanchez family needed help to raise the $25,000 it would take complete the adoption process.

As we were all reacting on Facebook to the news, Sheree threw out an idea... in fact, it was THE first concrete idea for fundraising thrown out... "How about a crab feed?"

And we never looked back.

Fast forward eight weeks (yes, only eight weeks!) and THE MOST AMAZING GROUP OF WOMEN I have ever had the pleasure of knowing threw the best crab feed I've ever seen. And the classiest.

We took this room...

and in about two hours transformed it into this...

and two hours later things were swinging! We had a packed house! Nearly sold out - almost 160 people bought tickets! And they enjoyed all-you-could-eat salad, bread, pasta, crab, and dessert.

We had an awesome silent auction (this picture truly doesn't do it justice)...

a no-host bar...

SofiaBucks designed by Monica and sold throughout the night by Monica and Sheree as a way to raise extra money (and Sheree got all us volunteers awesome tees to wear at the event!)...

Amazing signage created by Jen's sister-in-law...

And here's Monica introducing Jen and Hector, and telling the crowd Sofia's story...

I know. I know. You want to know how much money we raised. We're still crunching numbers (we had previous ticket sales, online donations, etc. so I'm working on a final figure)... but I promise it will be announced soon - later this week - by Jen and Hector :)

The best parts of the whole evening? Here's my top five...

1. Working with nearly 40 (40!) volunteers who worked their butts off to pull off an event that none of them had ever done before (with the exception of our head chef - without Jim we truly could not have done it).
2. Witnessing the amazing support of our community - both broadly and the Ds community (we even had some families with wee-little-ones there... it was their first big event meeting other families who have a child with Ds... imagine if your first experience meeting other families was an event designed to rescue an orphan with Ds and all you saw was love and support pouring from the hearts of everyone in every direction!)
3. Seeing adults with Down syndrome who used their own funds to not only purchase a ticket to the event, but donate money to help Jen and Hector adopt Sofia. One young woman (she is 18 years old) contacted me in advance because she wanted to buy 2 tickets (one for herself and one for her mother) to the crab feed - she LOVES crab - but she had spent all of her Social Security money on her prom dress (!!!!!)... she wanted to know if she could post-date her check so we would cash it after her next SS check was deposited (of course, that's what we did!). And she bid on an item in the silent auction donated by Lisa (a beautiful bag and an autographed copy of Gifts 2) - the young lady kept checking the item and every time she saw she was still in the lead (or placed a higher bid to get back in the lead) she would cheer with excitement and give her mom hugs and high fives. And she won the item. 
4. Standing with a group of women who have a child with Ds to support another mama we all love dearly (and many of them not only helped behind the scenes, but most served dinner or worked in the kitchen - not exactly glamorous)... I can't even begin to tell you how much Jen, Sheree, Monica, Chrystal, Jonna, Jenni, Gina, Susan, Sarah G., Heather, Sarah P., Nancy, Debbie all mean to me.
5. Realizing part way through the dinner that this guy...

       
  is about to have a new friend brought me to tears...

Prebiotics & Probiotics

This afternoon I had the opportunity to attend a lecture on probiotics given by Dr. Yinka Davies (she's a pediatric GI specialist who earned her degree at Stanford and did her residency at DC Children's Hospital). She presented research around the efficacy and benefits of prebiotics and probiotics for pediatric patients (and, truthfully, all children and adults). I know many of the parents I've met through my blog are interested in nutrition and health for our kiddos with Ds, so I thought I would share a few highlights from her lecture. Please keep in mind that although Dr. Davies is an MD, you are only getting a few notes from my own understanding of her lecture, so you should talk to your pediatrician or a GI specialist for more information. I'm just repeating some key points here.

• our GI tracts have both good and bad flora - the good flora is necessary for good digestion, nutrition absorption, and overall health
• 70% of our immune system is in your gut (the flora)
• people should take PRObiotics to help keep the flora in balance - even small things can throw flora off balance (e.g., stress, food sensitivities/allergies, illness, etc.)
• babies born via c-section are at increased risk of imbalance and need probiotics because they didn't travel through the vaginal tract (which is where babies are first exposed to healthy flora and yeasts - it kind of "jump starts" their own flora production)
• PREbiotics help your own DNA (your own natural production of flora) AND probiotics propagate good gut flora (in other words, prebiotics "feed" your own natural production and the probiotics to ensure the good flora thrive)

A few more interesting things to note...

• breastmilk is a natural prebiotic and bifidobacteria (one kind of probiotic)... so more reason to try to breastfeed if you can (I wasn't able to - not because of Sheridan's latch, etc., but simply because I didn't produce enough milk - I'm thankful I had him on probiotics since birth)
• probiotic strains need to be at 10 to the 9th power to work properly (so if a bottle of probiotics only has a few million lactobacilli, it won't even work so it's like taking a placebo)- just as an example, in order to get enough probiotics for one day, you'd have to eat at least 45 containers of Activa yogurt
• only two brands of probiotics have ever been tested with rigorous scientific studies (more on this below)... that doesn't mean that other brands don't work, it just means they haven't been tested so nobody can really say if they are effective
• probiotics are alive, so if a probiotic is purchased off the shelf at a store, likelihood is that it is already dead and at that point it is just a placebo - it's really important to purchase probiotics that are kept refrigerated, and you should keep them refrigerated, too
• probiotics take about 3 weeks to get to full effect in your system (you have to take them every day), and if you stop taking them the flora they produce goes away, too

Dr. Davies suggested that the best probiotic available (based on research and clinical experience) is VSL#3 because it is so well-rounded (meaning it contains all the different strains humans need) and it is proven to be effective (meaning it actually results in flora growth in the gut). Children under 1 year of age should take a 225 billion dose (1/2 packet) and anyone over 1 year of age should take 450 billion (a full packet). It's expensive, but some insurance companies do cover it if you get a prescription for the double strength (the double strength is only available by prescription).

As for prebiotics, Dr. Davis said that 5-10 grams of soluble fiber = prebiotics. In other words, if you consume enough soluble fiber you don't need to supplement. If, however, you don't, any prebiotic off the shelf will work. She did mention that she recommends Healthy Trac for her own family and her patients.

And, I'm just gonna say it one more time... I'm not making any recommendations here and you definitely shouldn't make any decisions simply based on this post. Be sure to talk to your child's pediatrician or GI specialist, or at least do some additional research to determine whether or not this is something that is right for you and your family :)

Squishy Goodness

I recently received a kind, thoughtful gift from a dear friend... a bag of home-grown oranges. And tonight, after Sheridan was asleep and planning for Sofia's Crab Feed and Silent Auction was complete (for tonight anyway), I remembered that bag of oranges that I had set just inside our side door last week.

And I got down to work.

And I forgot how wonderful that squishy sound is... the sound of squeezing oranges by hand. The aroma filled our entire house (shhhh... our house is actually kinda small, but it sounds awesome, right?). And I made quite a mess of the situation... hands dripping with juice. Splashes of juice on the countertop.

Brown Bear watched over me while Gary listened to his iPod and did laundry (including our usual every-other-day load of diapers - yes, we do all cloth diapers & cloth wipes, but we're not crazy).

By the time I was done the sacrificial orange peels had taken over the counter...

and all that was left was the pulp. So, those oj connoisseurs out there are likely wondering where I stand on the pulp issue.

Can't stand the stuff... but don't you worry your little head. I pressed all that yummy juice out. In fact, to this day I still use the little glass-size strainer that my dad bought me when I was growing up. I'm the only one in the house who strained the orange juice into my glass. I guess it's not just our kids with Ds that have sensory issues, huh? =D

So how did it turn out? Was it sweet? Was it slightly sour? Was it tangy?

Don't know yet. I put it in the refrigerator so it can chill over night. (please only look at the pitcher of juice and not the embarrassing mess that is the fridge)

I'm most excited about waking up in the morning, and as I'm getting Sheridan dressed for the day I'll suddenly remember that we have fresh-squeezed orange juice to start our morning.

And Sheridan will have his first taste of orange juice. (yep, I'm a mean mama who rarely gives her child a bit of nectar... he loves water and I'm stickin' to it)

Thank you, Jonna, for such a sweet, simple gift. I loved the squishy goodness tonight.

And just to prove to you that everyone in this family loves Miss Jonna...

Oh, and by the way, another special thank you to my dear friends Jen (who spoiled my pasty white toes)...

and Monica who graciously lent some very snazzy hand-me-downs to Sir Sheridan. You really know his colors! And Chrystal who helped out with some Costco shopping and awesome silent auction finds. And... well, the list goes on with all the amazing things our friends have done lately.

So, I guess you could say that my friends are taking great care of us... thank you for all the goodness you add to our lives!

Adding Security to Your Blog

After the heart-wrenching attack on NDSC's More Alike Than Different Campaign, many members of the Oz Squad began discussing the security of our own blogs. Specifically, how can we better protect the images we upload of our children so people can't simply download them (and worse, manipulate them).

I found a relatively easy way to bypass the two most common ways people download images from blogger:

1. people can right-click on your images and simply "save as"

2. even if you disable right-clicking, people can left-click on your image and it will redirect them to your original file in blogger (which is even bigger, better quality) and people can save that image.

In an effort to increase the security of my images and content I did some sleuthing (along with some of you - so thank you for the back-and-forth!) and here is the best way I found to disable right-clicking and the left-click work around. It is a bit cumbersome (and will be a TOTAL hassle as I go back and try to do this to all my existing posts), but it's not bad if you do this as you create new posts... and I found this to give me the protection I wanted without losing some of the functionality I know I rely on (e.g., if you disable all right-clicking on your blog, people cannot link to a specific post if they want).

WARNING: This cannot prevent somebody from taking a screen image or viewing your source code; therefore, I now embed a copyright on each image. Trust me, anybody who tries the first two common ways to download your image will get the point that you don't allow it - but you can't prevent people from taking a screen shot (but by disabling the left-click on the image, all they can take a screen shot of is the smaller, lesser quality image in your post). This is something I am willing to live with.

Although there are a couple different ways to get the same results, this is what I found to be easiest.

Here you go... there's only 3 steps!

STEP ONE: Create your blog post, including uploading any images

STEP TWO: Switch to HTML edit. Each image uploaded looks like this:

(for the purpose of illustration, I allow readers to left-click and right-click on these images so you can see them clearly - just click on it once and you will be taken to a larger version so you can see the text clearly)

The blue part I highlighted above is the html code that links your image back to the original picture you uploaded through blogger. DELETE IT. But be careful that you only delete the portion in blue. Here is what it looks like when you have done it correctly (again, click the image to see the code in detail):


Now you have eliminated the left-click work around...

STEP THREE: If you want to disable right-clicking on the image, insert the following code right before the end of the image html. Let's break it down... here's the code to disable the rick-click and provides a warning:

oncontextmenu='alert("© lisa lindsey 2010"); return false;'

Notice that my code provides a warning that simply indicates the image is copyrighted by me. You could come up with something more creative, or scary, if you want :)

Now, insert that at the very end of the image code, where I have the red X below (again, click on the image to see the code more clearly):


It is very important that you put it right before the /> at the end of the image tag. When you are done, it will look like this:


THAT'S IT! It's just 3 steps... I know it sounds cumbersome, but it's actually pretty quick and easy while you're creating your posts. If you want to see an example of the results, you can check out my two latest posts (I haven't gone back through my whole blog yet):

In. To. Everything. and He Makes Me So Happy

I hope some of you find this useful. I share this only because I think we do more good out in the open and I would hate to see too many people go private, although I truly understand why some of you have made that personal choice. There is, unfortunately, no perfect solution to protect our images...

Besides, I've decided that Sheridan is simply too cute to stop sharing pictures :)

And if you see anyone using your photos on Google fill out a Copyright Claim here (but be sure to read the process carefully - it means you are embarking on a legal journey).

In. To. Everything.

(we clearly need a new garbage/recycling plan)

I think it's time to get the boy a real push toy.

Whoops!

A few weeks ago, at Sheridan's water therapy, I noticed an older gentleman in his 70s who was coaching a woman as she swam laps on the other side of the pool. Somebody then pointed out to me, "Did you see that man over there? His daughter has Down syndrome!"

I couldn't actually see his daughter given that she was swimming laps, but I was excited to meet them both.

Now, many of you might remember Chrystal's attempts to create a much-needed gang sign (and her sequel). And I have read countless posts about people wondering whether or not they should approach a parent of a child with Ds. Or approach a person with Ds. We've all been there.

But I just walked right up to him and said hello with a big ol' smile on my face...

"Hi! My name is Lisa. I saw you working with your daughter over there. I just wanted to introduce myself and say hi." Now pointing to Sheridan in the water, "This is my son Sheridan. He has Down syndrome, too!"

"Oh. My daughter doesn't have Down syndrome..."

Oh. Shit.

"...but if you HAVE to label her..."

Oh, jeez. JEEZ!! No! I don't HAVE to label her... I don't WANT to label her!

"...the doctors say she has Williams syndrome, but really, she was a hypocalcemic baby. Too little calcium and other stuff stunted her growth and she has pretty severe mental retardation."

Nervous and feeling awful because I likely offended the man, I try to get out of the conversation with a genuine smile and sentiment... "Well, I just wanted to say hello and learn a little bit about you and your daughter. She looks like she's a great swimmer. I hope Sheridan will love swimming that much one day!"

He kept turning to look at Sheridan. "Are you SURE he has Down syndrome? He doesn't look like he has Down syndrome."

"Yep. He does."

"Hmm. Wow. Are you sure? He doesn't look like he has it."

"Yep. I'm sure." Insert toothy grin.

"Well, good for you for getting him in the water and having him so active so young. He looks like he's doing really well!"

And then he proceeded to open up and we had a great conversation about his daughter and his life raising a child with special needs.

He told me his daughter is 45 years old and she still lives at home. That might freak some people out, but it warmed my heart. I would love for Sheridan to be able to stay with us - we hope to eventually buy a home that has an in-laws quarters so Sheridan can have his independence, but we're close by. But, of course, Sheridan might have a thing or two to say about that ;-)

He told me his wife is writing a book about the importance and benefits of keeping your child with special needs at home (rather than having them institutionalized, living in assisted care facilities, and enrolling them full time in adult day care). Remember, they come from a VERY different era - most kids with special needs were institutionalized. I felt like I was standing in the presence of greatness. Isn't that odd? That we perceive it as "amazing" when somebody chooses to keep, raise, protect, aid, and support their children? It shouldn't be noteworthy. But 45 years ago they were rebels. And that is awesome to me.

He told me to make sure I stay on top of the schools - they fought tooth and nail to make sure their daughter got the education she needed and deserved. That she wasn't segregated, but that she also got the support and special classes she needed. He mentioned, "back when we were fighting the school district, a new federal law passed that said our daughter had the right to the least restrictive education, and we filed a lawsuit to make the district create an educational environment that was right for her." HE WAS A TRAILBLAZER!!! He said they eventually got the district to pay for private school and the lawsuit was dropped - he and his wife are fighters. I loved that.

And here's one that scared the crap out of me, but I appreciated his story... As he shared the story his eyes got glassy. He teared up. He wiped under his eyes to avoid the tears from falling down his cheek, "This is something we will never recover from. It's been really hard on her, and we will never get over it." His daughter was kidnapped a few years ago. A man randomly took her off the street, shoved her in his car, took her to an empty parking lot, and tried to rape her. She told the abductor, "I'm sorry. I don't know what you want me to do. I don't understand things very well. I'm disabled. I've never done this before." The abductor got so angry that he gave up, roughed her up a bit, and then dumped her in the parking lot of a local mall.

I have no words for this. Complete fear gripped me... our children can, at times, be very vulnerable. My heart was broken for her, for her dad, for her mom...

The dad told me that I was lucky that Sheridan has Down syndrome. In his experience, the young men with Down syndrome are able to do more for themselves (compared to people with other disabilities at adult facilities he has met). He kept saying over and over how fortunate we are to have a child with Ds.

He told me his daughter swims in the Special Olympics, and they were training. "Official training doesn't start for a few months, but she likes to eat and she's gained a lot of weight. So, we're starting her early to help her get in better shape." She's competed for over 4 years... starting at 41 years old! She's amazing!

At the end of our conversation his daughter yelled out to him, "Daddy! I'm getting out now!" "Oh no you're not... I have a kickboard for you and you need to do more laps!" She scowled at him. I giggled and smiled at him. He leaned in and said, "Now I'm gonna have to explain this to my wife. My daughter thinks I'm hitting on you."

HA!

He Makes Me So Happy...