Call Me Crazy... Over the edge for Reece's Rainbow

I have to share a cause near and dear to my heart! Reece's Rainbow is an organization that helps people in the U.S. adopt special needs children (primarily those with Down syndrome) from other countries like Estonia, the Ukraine, Serbia and Bulgaria. In these countries, most children born with any kind of "defect" are put into orphanages. At 4-5 years of age, they are carted off to institutions where many die of neglect. Parents generally don't try to keep children with physical or cognitive issues because they have to pay for any of the "defective" child's medical expenses out-of-pocket.

Unfortunately, the institutions and many of the orphanages are underfunded, understaffed and overcrowded. Children with medical issues rarely receive proper medical attention, nourishment or the stimulation they need.

It turns into a vicious cycle where the culture shuns people who are different and places no value in those who have Down syndrome, cerebral palsy, blindness, autism, cleft pallet and other birth defects.

Because my husband and I are not financially able to adopt or send more than $10 to Reece's Rainbow every now and then, I have been looking into new and different ways of raising funds and awareness.

I may have gone off the deep-end, but this week I started a campaign to get ABC's Dancing With The Stars let me come on the show with 100 percent of the profits going to Reece's Rainbow. I realize it's a one in a million chance, but at very least, maybe I can get more people to go to the RR website and help out.

My FaceBook fan page can be found at: Ask ABC to Help a Great Cause! DWTS & *her*

Please spread the word! These beautiful angels all deserve a chance!

For more information, please click Reece's Rainbow

You can also make a donation directly to:
Reece's Rainbow
PO Box 4024
Gaithersburg, MD 20885

Or by credit card at: Show You Care

Most importantly, please spread the word!!

Kids and Garden and Stuff

When he moved from TX to VA in November, 2009, Broadway was thrilled to learn his new high school has JrROTC. He doesn't even mind that it's Air-Force ROTC even though he wants to join the Army some day. His ultimate goal is to become an Army Ranger.

Needless to say, the kid LIVES for ROTC these days. They only have uniform day once a week, but I don't think he'd mind a bit if he got to wear it every day. He has been participating in tons of after-school ROTC activities, community service events and training exercises. Getting straight A's in the class is nice, but getting a ribbon or medal to pin on his uniform is a veritable Nirvana in his eyes!

Today was uniform day. He was kind enough to allow me to take a picture of him. Apparently, wearing the uniform requires a certain level of ceremony. Smiling is not part of that ceremony.

Don't mind the ugly gates in the background on the front porch. That was a feeble attempt on my part to keep The Skink contained. Much to my consternation, she figured out how to escape from mommy's dumb gate in less than 3 minutes flat. Before I knew it, she was butt-scooting down the front steps and making for the road. Of course at that point I had to figure out how to let myself out of the gate... I wasn't as quick as she was (LOL).

Iraq has fully recovered from her bout with the stomach virus, thank goodness. Unfortunately, 2 days without her medication has left her very anxious. When she got home from school, she started crying immediately and told me she did NOT know how to do her homework. I picked up the 2 sheets of homework she had and reassured her she had done the same kind of thing at least 20 times  in the last few weeks. No dice! The tears continued. Then the wailing started. *sigh*    *deep breath*

I calmly offered her the option of going up to her room and taking a nap, or sitting down quietly to do her homework.

Don't you wish it were that easy??

I always follow up with what I say... yet she always has to test the boundaries of my sanity just to make sure I still have some hint of it left.

I finally got her to sit down and look at the paper (once she decided she did NOT want to take a nap). I attempted to get her started on her math work by drawing out a number line to make adding and subtracting easier. I made the dire mistake of drawing it on one of those magnetic, erasable pads. In a huff, she erased it and screamed that she didn't WANT the help of a number line - she wanted MOM help. (Yes - and I can assure you MOM was craving a little help too!)

*another deep breath*

I calmly informed her that MOM HAD helped her by drawing her a number line which she chose to erase. I again offered her a nap.

In tears she wailed that she was SOOOORRRRRRYYYYYYYY! She didn't MEAN to erase the number line and would I PLEAAAAAASSSE draw her another.

*another deep breath*

"I'm sorry. I can't understand you when you use that voice. When you are ready to use a nice voice without wailing, I will be able to understand you and help you."

*Sob* "I'm..." *sob* "trying!" She gasped.

"Noope... still can't understand you." *another deep breath*

At this point I'm starting to wonder when I will keel over from hyperventilation.

Amazingly, after only four or five mom-daughter exchanges, she realized she could do the homework, and that she was really quite good at it. Five minutes later she was skipping out the door to play with some friends across the street.

*banging head against wall to relieve stress from not loosing it with Iraq*

It has been raining on and off the last few days and Iraq has not had to water her garden. Still, she enjoys going out each day to admire her masterpiece that she herself grew from teeny little seeds. Gardening has proved a calming influence on Iraq... as long as we do everything HER WAY and the plants are kept in neat, orderly lines. This is how she has them arranged currently:

And just look at how our strawberries are doing!

And:

The Skink spent the morning wearing a Little Swimmer diaper as a hat. I was thankful it had Nemo on it as opposed to being plain white... She would have looked like a tiny little Klan member if it weren't for the fishie! She is a gangsta at heart, preferring to wear her absorbent headpiece down over her eyes. If I tried to pull it up a bit, she would yank it right back down and peek out at me with glowering eyes - ever questioning why I would try to *fix* something that she thought was fine just the way it was! My bad!

As for me, I am very happy to say that my new washer and dryer were delivered today! The Skink was most helpful in closing and locking the door each time the poor delivery guys would run out to grab another part or piece. I got some great exercise wrangling my tot as the guys worked their magic. The  washer and dryer can be used as side-by-side units and you can buy the pedestals for them, or they can be stacked. The house we're in right now is almost 100 years old and has been retrofitted to accommodate a  stackable unit. The new ones fit perfectly in the space :o)

Aint they beeeyoootiful? The last washer and dryer we bought were a really nice used side-by-side set which now resides in my parents' lower level laundry room. A stackable unit came with our rental house, but unfortunately the washer needed to be banged every now and then to get it to spin, and the dryer chewed up it's fair share of our clothes. I really can't complain... I mean, most rental houses don't even come with a washer and dryer! We also have some wonderful landlords (they came with the house) and the last thing we wanted to do was complain about this proverbial "gift horse." I'm really excited about this set!! They will work in whatever house we end up in next (though we plan to stay here for a while). Yet they also mean a little less stress in my charmed life. OK - enough blogging - I gotta get back to reclining on my chaise lounge and eating bon-bons! (Yeah - like that's ever gonna happen!) LOL!

Cow... MOO!!

The other day The Skink made up her first song. It was sweet and her little voice went up and down in the best tune she could muster. The words could not be understood. For about a minute, the song went on. It went something like this:

"Asha leber no ahtamaaaa, prillee doofa dub meee,
Moper dukah pooshie new, adah Cow...     MOO!"

In that moment, the joy that filled me was akin to what Beethoven's mother must have felt when he first showed his musical talent. The song had a substance and  clearly, to The Skink at least, a story... about a Cow.

As it happens, The Skink's favorite animals happen to be horses and cows. Her favorite toy - the one she doesn't want to sleep without - is a Beanie Baby cow that is black and white. She carries it about the house. Every so often the cow takes flight, and upon landing a small voice joyfully yells "Moo!" It's the one toy she has that has explored the interior of the washing machine many, many times. It's the one toy I really need to locate a doppelganger to... just in case!

Iraq's favorite item at the same age was a pink blanket. Lucky for us, the blanket's identical litter mates were sold in every Wal-Mart across the country. Though Iraq no longer requires the constant companionship of the blanket today, I believe we still have about 6 pink blankets tucked safely away in a drawer. Luckily for us, The Skink's reaction to having to go to bed without her prize cow would never reach the magnitude of the melt-downs we used to witness on the few occasions Iraq's pink blanket wasn't ready and waiting in her bed.

Last Christmas I looked everywhere for cow toddler bedding. I found CowBOY and CowGirl bedding, but no plain ol' cow bedding... so I ended up making some.

Yup - found pink and "cow" striped flannel and accented it with a black & white cow print for the bedspread and dust-ruffle.

And yes, she loves it!

Here are some new Skink shots of the day...

The COW is never too far behind... MOO!

With Daddy on the front porch swing.

Skinks -N- Roses

Hypotonia... Skink style!

Just... The Skink!

*

Hope For The Future

Tonight we took Iraq and The Skink to a big MacDonald's with an indoor play land. It had been raining on and off all day today, and both were ready to run and play. We got our food and sat down. Iraq headed off pretty quickly to go play and The Skink sat in the booth like a big girl and ate all her food. (She looked so grown up!)

After The Skink finished her meal, she wanted to go play too. She checked out the toddler area, but was soon drawn to the big slides and tunnels the older kids were playing on. I helped her climb the first part, but there were TONS of kids there which made it hard for me to stay with her. With a bit of worry, I set The Skink loose and hoped for the best.

After about 5 minutes, I realized a boy of about 8 or 9 years of age was sticking close to The Skink. He followed her about from tunnel to tunnel and gave her a boost when ever she got to a climbing area she couldn't manage on her own. Right there in public, I could feel the tears welling up in my eyes as I watched the boy gently help her play... and helped her feel just like all the other kids.

I know Iraq and The Skink had a wonderful time tonight, but I'll just bet that I had the best time of all.

Even though I have a positive outlook and a lot of hope for The Skink's future, I have my moments of doubt. I have moments when I wonder how The Skink feels when she is not able to keep up with her peers. I wonder if she will be left behind and forgotten. Then... some kid shows up and takes a child he has never met before, by the hand. A child who is much younger, and clearly a bit different than the other kids. Unafraid, he moves away from the other children his age. He gently guides her through the maze, making sure the other children don't step on her, and seeing that she gets a gentle push up to the next area.

And then I know everything will be OK.

*

How to Smack Your Doctor!

Sunday, March 21st is World Down Syndrome Day! Why, you may ask, is this day set aside for Down syndrome? Well, it's because 3/21 is representative of the triplication of the 21's chromosome which causes Down syndrome.

Huh?

I know... right? OK - so If you Google "Down syndrome" you will likely find all sorts of glorious explanations about chromosomes and symptoms along with a long and illustrious list of the things that will be WRONG with individuals with Down syndrome.

If you are a mother who has just learned your baby has Down syndrome (either in-utero or after the birth of your baby) you may have a visit from a doctor who unloads a dump-truck full of medical jargon on you about all the (mostly negative) things he or she thinks you should know about Down syndrome.

So - please raise your hand if you are the parent of a "typical" child and some doctor sat you down after your kid was born to go over all the things that could possibly go wrong with your baby??

Anyone? No one??

No - when you have a "typical" child, it is more likely people will speculate about whether the child will someday be a doctor, or a football player, or a race car driver. Nobody comes in to go over the likelihood of heart conditions, digestive issues or the percentage of children that develop leukemia!

Why is it that few new parents receive BALANCED information?

When The Skink was born, I knew very little about Down syndrome, and now the doctors were filling my head with all the possible negatives about the condition they thought I should know - regardless of the fact that MY daughter did not even HAVE any dangerous heart condition, signs of strangulated bowels, or any of the other horrible problems that SOME people with Down syndrome have. Hellllllooooooooo - guess what? SOME people who DON'T have Down syndrome have those conditions too, but I'll bet their parents didn't get all the doom and gloom information on these problems until they actually knew the child HAD the issue!

The doctor who informed me about Down syndrome even went so far as to tell me there was no way to know how "profoundly" my daughter would be affected. Knowing what I know now, I realize that has got to be one of the most stupid and outdated concepts still floating around! There is no such thing as a profound or mild case of Down syndrome. It's either Trisome 21 (a triplication of every 21st chromosome) or Mosaic Down syndrome where only some of the chromosomes have triplicated, and neither is an indicator of how smart your child is.

Just like any child, IQs will vary. The people with Down syndrome who were classified as "profoundly affected" back in the dark ages, actually had secondary issues like autism or early-onset Alzheimer's. Just as any child from any family *might* have autism, children with Down syndrome can have autism too, making them seem less aware or less able to learn.

Now the TRUTH about Down syndrome that every parent SHOULD be told:
Most individuals with Down syndrome grow up to hold jobs, live independently, have fulfilling relationships and, most importantly, are happy!

WOW! Who knew?

When Iraq was born, I didn't get any doom and gloom information about the stuff that could be *wrong* with her. She looked completely normal and doesn't have any extra chromosomes. In fact, it took us 6 whole years to get a proper diagnosis for Aspergers (autism spectrum disorder) AND anxiety disorder AND childhood depression.

Now - ask me which child has been harder to raise. Ask me which child has required more life-style changes for mom and dad??? Go ahead...

Honestly? Are you seriously ASKING me that question?? (kidding)

Our little Skink with Down syndrome has always been happy doing what ever was on the schedule for the day. In all honesty, the family schedule has always been created around Iraq's needs. Iraq's frequent melt-downs, anxiety over strange things and tendency to become over-stimulated in a variety of settings have dictated where we can and can't go with her, what we'll need to bring and how we need to prepare.

The Skink just seems to enjoy what ever we do. The Skink is creative, and smart, and funny, and engaging. She is just a kid like any other kid. She is an individual. She loves school. She can read over 250 words at the age of 3. She enjoys new experiences, and museums and trips to new places. She smiles a lot. She loves going to the park. She likes to help out around the house. She learns new things every day. She makes me smile every day!

And THAT, my friends, is exactly the information I wish I had been given about Down syndrome.
What is Down syndrome NOT?? It is not some horrible thing. It is not embarrassing. It is not an indication I'll be spending my life providing for somebody who can not provide for herself. It is not something sad. It does not mean my daughter will have horrible medical problems. It does not mean she won't graduate from high school, or even go to college. It does not mean she won't have a job she loves someday. It does not mean she won't get married and have love, happiness and joy for the rest of her life. It does not mean she'll never experience heartbreak - just like the rest of us. It is not something I am afraid of or upset about!

She is just my kid. And I love her with all my heart!

So, lets CELEBRATE World Down Syndrome Day - and share the truth :o)

*Disclaimer: The blogger does not in any way advocate the smacking of doctors. Some of my best friends are doctors and do NOT require smacking. The only doctors that should be smacked are those that express smack-worthy and unenlightened opinions about Down syndrome. This blogger advocates properly educating smack-worthy doctors and asking them to present a balanced (and non-religion based) picture about life with a child with Down syndrome by providing positive information along side all the medical crap.