Saturday, March 31, 2012

Your Left, Your Left, Your Left, Right... Oh Shiny!

When you have an 8-year-old sister with Asperger's syndrome and a 5-year-old sister with Down syndrome, you don't get a lot of your mom's blog-time. It's not that she doesn't love you... no - it's because you're easy and you don't do bat-s*** crazy stuff that requires your mom to vent about you regularly!

My son takes after me... he's not going to "tower over" many people ever... unless they're like... 6.   
At least he's taller than me - which isn't saying much since I'm 5'0".

My oldest kiddo, Broadway, turned 17 on St. Patrick's Day this year. Yeah, yeah. I know what you're thinking. "You don't look old enough to have a 17-year-old!"

(Hey - a girl can dream, right?) Honestly, when people say "They grow up so fast," it's that feeling and more for me. I mean, wasn't I 17, like... a couple months ago? But no. I had this kid when I was 26.  *sigh*

Today Broadway competed in the Regional JrROTC Drill Team Competition. Normally I don't get to go to these kinds of things as a result of the ever-present Thing 1 and Thing 2.


My husband works a rotating shift which means he works every other weekend. That's when Murphy's Law kicks in to ensure that every special event ever planned will fall on one of the weekends he is working. Just the thought of going to some giant high school miles from home with my camera and my two adorable but very energetic "things" results in an immediate rise in my blood pressure.

Can't you see me up in the bleachers trying to focus for the perfect shot just as Iraq screeches "Quit copying me!" at The Skink, sending The Skink scurrying through the crowded bleachers in search of cover? Then there are The Skink's requests to "Go potty?" ever 10 minutes and Iraq's tendency to wander off toward something of interest any time I'm not looking directly at her.

It breaks my heart to miss special events, but my mom-capabilities only extend so far.

Today was my lucky day! Even though my Mom was out of town and unable to come help out, my Dad kindly (and bravely) volunteered for the job! Since Broadway had to be at the host school at o' dark-thirty this morning, Pop showed up to take him so I could take my time getting the girls up, dressed, fed, changed, lost shoe found, cleaned up, brushed, glasses located, into the car, back in the house to change a diaper, back into the car, back into the house to get a forgotten cup... you get the idea.

When the girls and I finally got there, we mounted the bleachers to watch for a little bit. The girls were actually rather interested in the activities of the teams performing below. The Skink clapped for everybody... like the guy who turned the wrong way and steam-rolled over a team member. (It's OK - it wasn't our team.) When each team marched to the exit, The Skink's little voice would rise up to say, "Bye-bye marchers!" to the amusement of the people around us.


It was fun in an exhaustively vigilant kind of way. I didn't have to worry about missing my daily cardio workout after the 34th trip back up to the top row of the bleachers... Skinks have to potty a lot. And during potty-training you just don't say, "No!"

So when I was good and tired, Iraq had wandered off / disappeared for the 4th time and it had become evident Broadway would not be competing for a while, I took the girls outside to play in the highway grass in front of the school. Translation: After my workout on the stair-stepper, I got a good run in, too! Pop divided his time between watching the other competitors and helping me chase the girls about.

Around noon the judges disappeared, so I hauled the kids out to the car (weight training) and made a happy-meal run. Instead of letting them eat it in the car, we hauled it back up to the top of the bleachers where I told them to eat niiiiiiiiiiicccce and slllllllllllloooooowwwwwwww in an attempt to buy a little more time (and sanity).


The pictures aren't great quality. I had some idea of what the day would hold for us so there was no WAY I was bringing my new camera! I'm glad after seeing what my old camera went through in the course of the day!

So we waited...  and waited... and waited... Turns out Broadway's team was the last team to compete. Dang it, Mr. Murphy! I don't know who the heck you are or how the he11 you got your law passed, but you are not getting any gold stars from me today!


There was a team from another school... ok - there were teams from a LOT of other schools, but there was this one team... this one really scary-good team. Holy cow! They looked like some sort of SWAT team, there to take out the rest of the competition. They made us really nervous!


 And FINALLY... Finally Broadway's team was on deck and set to go!




And that's when Murphy apparently pinched The Skink who had decided she had had enough!

"NOOOOOOOOOoooo! Outside! Go play OUTSIIIIIIIIIIIIIIIDE!"

And you know what Pop did? After getting up at a ridiculously early time in the morning, driving Broadway to the host school and helping me wrangle Thing 1 and Thing 2 for hours on end... Pop took The Skink by the hand and took her outside to play so I could watch my son compete!

The good news is that Pop STILL got to see Broadway's team's performance, because MOM got the whole thing on video! When they line up in a straight line facing the camera, MY kid is the 3rd one from the left... the somewhat vertically challenged one  :o) 



And you know what else?

My son's team took 1st Place!  

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Friday, March 30, 2012

Dear Snarky Down Syndrome Community

Dear Snarky Groups Within the Down Syndrome Community,
You know who you are.

(And if the post title isn't enough to get you fired up, wait until you read the rest of what I'm going to write about you.)

As many of you know, a certain blogger-mommy in our community has a new book coming out. This fact combined with her already prevalent popularity apparently means she is now up for public target practice, so get your slings, your arrows, your knives, spears and firearms and join us all on any social networking site to participate in the hunt!

It'll be like our own Down syndrome community version of The Hunger Games.

And to what end?

We've all seen it before. It's not just this particular blogger, this particular book or this particular time. We've seen it on hundreds of forums and in the comments sections of news articles, small and large. We've seen people of all faiths, colors and all walks of life become the Target of the Day for our community as a whole.

Why?

Well, among the comments I've seen (as they multiply like genetically enhanced rats) on a variety of different venues in the last 48 hours, people are pointing out every possible reason they don't (or do) like this person, her lifestyle and her book.

I have news for you. You can please all of the people some of the time and some of the people all of the time, but you can't please all of the people all of  the time...  And YOU, Down syndrome community... you represent ALL of the people of a community which shares the bond, troubles and privileges of raising a child with Down syndrome.

YOU can not be pleased ALL of the time.

Some things will please you, and some things will make you angry, sad or resentful.  I see some people out there saying things to the effect of, "When I see something I don't agree with or don't like, I'm not one to keep my mouth shut. It's my RIGHT to express myself and my point of view!"

Well GOOD FOR YOU!

In the U.S. you DO have First Amendment Rights which include the Freedom of Speech and the Freedom of Religion. And guess what? So do the people who still throw around the word RETARD as an offensive term. Oh yeah - I know "It's not the same thing!" But see... it is.

Within the Down syndrome community we understand that "Retard" is a word that is offensive to our loved ones. By allowing the perpetuation of the word throughout our society, we allow our children to become targets. So we spread the word to end the word... we don't want our children to be bullied!

You see, a bully is someone who targets another person. Wikipedia says the following about bullying:

"Bullying is a form of aggressive behavior manifested by the use of force or coercion to affect others, particularly when the behavior is habitual and involves an imbalance of power. It can include verbal harassment, physical assault or coercion and may be directed repeatedly towards particular victims, perhaps on grounds of race, religion, gender, sexuality, or ability. The "imbalance of power" may be social power and/or physical power. The victim of bullying is sometimes referred to as a "target".

"Bullying consists of three basic types of abuse – emotional, verbal, and physical. It typically involves subtle methods of coercion such as intimidation. Bullying can be defined in many different ways. The UK currently has no legal definition of bullying, while some U.S. states have laws against it.
Bullying ranges from simple one-on-one bullying to more complex bullying in which the bully may have one or more 'lieutenants' who may seem to be willing to assist the primary bully in his bullying activities. Bullying in school and the workplace is also referred to as peer abuse. 

Bullying can occur in any context in which human beings interact with each other. This includes school, church, family, the workplace, home, and neighborhoods. Bullying can exist between social groups, social classes, and even between countries (see jingoism). In fact, on an international scale, perceived or real imbalances of power between nations, in both economic systems and in treaty systems, are often cited as some of the primary causes of both World War I and World War II."


Who among you remembers high school? Do you remember that time you wore that sweater, or those jeans, or said that thing you said or did that thing you did... and suddenly you were the center of gossip or at the butt-end of nasty comments. Remember when that group of other students totally bashed you for it? They teased you or said snarky things about that thing you wore or said or did... and do you remember HOW YOU FELT?

You see, you did, said or wore something that they didn't like, agree with or that they felt didn't represent them. HOW DARE YOU! Because you live you life for them, don't you? Well... don't you?

Do you measure every thing you do, everything you say or write or think, for the sole purpose of pleasing EVERYBODY - - everybody ALL OF THE TIME?

I certainly hope not!

Each and every one of you is a completely unique individual with your own memories, your own experiences and your own opinions. Because you have First Amendment Rights, you can go to whatever church you want (or not), you can choose to be a party animal, you can choose to be messy or clean, you can choose to be a PTA member or a recluse or wear those jeans that everybody would have laughed at in high school.

If you want to, you can write your own book. You can present your life and your family in any way you choose... but no matter what YOU do, YOU will not make everybody happy all of the time.

And you know what else?                IT'S NOT ALL ABOUT YOU!

Angelina Jolie has adopted children from a number of different countries. Does that mean she represents ALL people who adopt internationally? Oh, hell no!

So why are so many of you worried about this one person in our own community who is a blogger, photographer and author... why are you worried about her representing YOU? Let me repeat: IT'S NOT ALL ABOUT YOU!

While she may be garnering publicity as a parent of a child with Down syndrome, do you really think the world at large is going to assume we are all just like her? Unless you assume all people who adopt internationally live the same way Angelina Jolie does, then you have nothing to worry about!

OK - so YOU didn't vote for this person to be popular. Well O! M! G!

I didn't vote for our current president, but you know what? I don't always get what I want! The world doesn't revolve around me, my life style, my choice to leave dishes in the sink...

It's one thing to say, "Huh - well, that person is a very different person than I am." It's a very different thing to point out all of the things you don't like about a person in a public manner! To me, one of the craziest things people complained about in regards to this particular person is how "perfect" she seems. REALLY? The horror that someone would do that! Because certainly YOU have never tried to look a certain way for the benefit of other people's opinions of you! I mean - why even bother to do the dishes or laundry, to shower or wear makeup... or clothes... because certainly YOU don't care what other people think about you, right?

So you know what? Go ahead! Be as snarky as you want - just like those kids who once teased you to tears. Go ahead and be a BULLY. But don't come crying to the rest of the Down syndrome community (because there are many of us who choose to be supportive of, and nice to each other) when someone uses the word "Retard" in their status update.

Come on people! Lets get over ourselves for once. You don't have to agree with someone or like someone... there is no law saying you have to like a certain book... but by making a person a target and publicly pointing out the things YOU don't like about them, you are NO better than any other bully... or than people who use the word "Retard."


Oh - and I don't expect you all to love me or the opinions I have expressed in this post! You know why? Because I have seen the hate that some of you are capable of. Haters, Trolls... what ever you want to call it...

Someday you'll understand...

The people who feel the need to pick apart the faults of others are generally the ones who aren't strong enough to work on their own faults.

And do you think picking on another person's shortcomings (perceived or real) makes you look, better, smarter, cooler??

No. It makes you look like an asshat! And while you may say you don't want the blogger in question to represent YOU, the rest of us certainly wouldn't pick an asshat over her. Go ahead. Chew on that for a while!

And if you want to "get in on the fun" and be a part of one of these target practice sessions with your friends?? You know damn well that all you have to do is gather a little of your own popularity... and you will be the next target!



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Thursday, March 29, 2012

A Child With Down Syndrome May Never Learn To Read (and other lies your doctor tells you)

Rarely a day goes by that I roll my eyes, remembering all the things a certain doctor informed me that my child with Down syndrome might never do or achieve.

"Your daughter may never learn to read. I'm sorry," he said as he broke the news about my then week-old daughter's test results.

Right.

Maybe if we locked her in a closed and fed her scraps through a hole in the wall.

The Skink is currently 5 years 7 months old and in kindergarten. We no longer patronize pessimistic pediatricians, period!




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Friday, March 23, 2012

Have I Mentioned I Love Spring?

My new camera has quickly become an addiction for me. I have always loved Spring and I've always loved taking pictures of Spring blooms...  so here is a little of what I snorted today...





Are you sneezing yet?

So... what is your favorite time of the year, and why?

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Thursday, March 22, 2012

Best Early Birthday Present EVER!

Funnies of the day:

So I've been working hard to lose weight and get in shape. I've been exercising regularly and a lot of muscle definition is now evident on my once (ahem) smushy bod. So today I got in some good cardio, putting in 10 miles on the elliptical walker in 45 minutes. Because I was a sweaty mess, and because it was 80 degrees today, I threw on a tank top instead of a T-shirt just before The Skink's bus arrived.

When I boarded the bus to help The Skink off, she looked at me hard, poked my bicep and shrieked, "BOOBIE!"

I thought the bus driver was going to fall out of her seat laughing!

It's great to know all my dieting and workout efforts are paying off... and not so great to know that I'm so small-chested that my biceps are so easily mistaken for breasts...

And in other news:

March 21st was World Down Syndrome Day. As if to celebrate the occasion in Emily Perl Kingsly (link to reference) -style, our tulips are starting to bloom.



The appearance of the colorful and fragrant blossoms are killing Iraq who has been positively expiring with the desire to pluck the tender plants.

Today I handed her a pair of scissors and told her she could cut one for our little bud-vase. I gave her instructions on just where to cut, and watched as she beheaded one unsuspecting plant, grinning ear-to-ear all the while.

No sooner had she cut the long stem, but tears welled up in her eyes. The poor kid felt guilty for cutting the flower. She cried for at least 5 minutes, saying she wished she hadn't cut it! Of course I was a very bad mommy and I laughed. Couldn't help it. The whole thing was so... Aspie... of her! She had an OCD-type desire to pick a flower, but immediately had a negative reaction to the very change she had caused.
Pure awesomeness!

And... this video had me in hysterics this morning! The set up: Nanny-cam catches babysitter sweetly playing with a toddler. Toddler throws a ball which knocks the babysitter's drinking glass over and breaks it. THE CAT hears the child crying and believes the babysitter is harming the child...



And after watching the video, I'm thinking this family doesn't need to worry about having a nanny-cam! Heck - THE CAT is watching out for the kid... God Father style!

Moving right along...

So, if you've followed my blog for more than a month, you know that my sweet father-in-law passed in early February. Though we didn't expect it, he left us a small sum of money with the instructions that we use it for ourselves (because apparently he knew me well enough to know what a penny-pincher I am and that it was all gonna go to bills if he didn't say it).

Check it out!


That... that is a Canon EOS 50D. It's something we never would have been able to afford. Last year my wonderful husband surprised me with a Canon PowerShot SX30 IS. To say I was over the moon would be a huge understatement when I received that camera! Over the year, that camera allowed me to learn a huge amount in the photography arena. I learned so much, in fact, that I was itching for more... I wanted Manual Focus!


Having played with my new baby for over a week now, I know for sure I was born for manual focus, baby!

So, please enjoy a veritable smorgasbord of my getting-to-know-my-new-camera practice shots!





Iraq is ridiculously photogenic. I can take 100 pictures of Iraq and 99 will be great. The Skink, however, is like me. She just isn't very photogenic. For what ever reason, today was photographic GOLD for The Skink!








And my favorite Skink-shot of all:


So - I hope everyone has a great Friday! Happy almost-weekend, folks!

Thursday, March 15, 2012

I Am Pro-Choice And I Have A Child With Down Syndrome

I am pro choice. 

 
It was my choice to be a mother to the babies that grew in my womb. While I believe in God, I do not attend a church and I do not feel affiliated with any particular religious sect or group. We are blessed in the US to have freedom of religion. Some of the first Europeans that came to this continent came for that exact reason after being persecuted in their homelands for their views. With the belief that religious persecution is wrong, the United States of America incorporated the freedom of religion into the core of it's laws and freedoms.

Amendment 1 - Freedom of Religion, Press;
Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.
 
I respect people of all faiths, or no faith at all. I feel that pushing my beliefs on other is inherently wrong, as I believe it is wrong for others to push their beliefs on me. The one thing I WILL say is that I feel that many times people make choices without having proper or complete information. All too often we hear or read an opinion on a certain subject and take that opinion or partial information as fact. 

Reassess what you "KNOW."

Over the years of your life you have spent a huge amount of time learning. You learn things in school, from your parents, from  your peers, from literature and from media outlets. You likely base your daily choices and decisions on what you "know" and what you have learned from past experiences. BUT... how often do you examine what you "know?"


If you live in the U.S., it is highly likely that when you were in 1st or 2nd grade, you learned a sweet little story about Thanksgiving. According to online sources, "In the United States, the modern Thanksgiving holiday tradition traces its origins to a 1621 celebration at Plymouth in present-day Massachusetts. The 1621 Plymouth feast and thanksgiving was prompted by a good harvest. While initially, the Plymouth colony did not have enough food to feed half of the 102 colonists, the Wampanoag Native Americans helped the Pilgrims by providing seeds and teaching them to fish. The practice of holding an annual harvest festival like this did not become a regular affair in New England until the late 1660s."

Did you know there is more to the story? A much darker part of the story? A part of the story where certain founding fathers of this country proclaimed a "Thanksgiving" holiday for ridding the land of the native savages? You know - the "native savages" who were called such because they weren't Christian and who lived in this country long before the Europeans came and took it from them. For more information CLICK HERE.

By our very nature, we Humans are nothing more than contradictions with clothing on.

I don't profess to have "The Answers,"  and looking at some of the most pivotal government and religious leaders throughout history, I don't believe they had the answers either. So I question. I question what authority says and I question what I know. No - I'm not rebelling against authority, but I don't take what I hear or am told as the absolute truth either (which makes me a really lousy church-goer for the most part). Is this bad? Um... don't you wish more people had questioned Hitler or Stalin? I question and then I determine how certain views align with my own morals and beliefs.

So, abortion. 

It is indisputable fact that abortion is a purely religious issue.

It is. Some people believe that life starts at conception, and others believe that life is not life until it is self-sufficiently viable. There are some who believe that full-term newborns do not qualify as life because they are not yet self-sufficient. As angry as that may make you, the matter is not about you, but about religion and belief.


Would I ever have an abortion? No... not as a form of birth control. But that is my belief. On the flip side, as a mother with 2 special-needs children, if I found that somehow I had become pregnant even though I had my tubes tied during my 3rd c-section (when I almost died, and my baby had to come into the world 10 weeks too soon) and that attempting to carry the pregnancy would almost certainly result in my own death... I would have to think about the 3 children who are already here and who need me. Would I wait 14 weeks - oh hell no! But the fact of the matter is that I have made the choice to take precautions against ever being faced with that situation. 

When I tried for my 1st and 2nd child, I really had to try! Pregnancy did not come easily for me. Perhaps that gave me a perspective that many other young parents don't have - if you want a baby, be thankful if you can have a baby! There are many women who can't. All in all, I estimate I spent more than 5 years of my life trying to have a baby. My 3rd pregnancy was my surprise bonus pregnancy!





If you want a "perfect" baby, you shouldn't be a parent. There is no such thing as a perfect baby. If you want a baby who you will love more than yourself and who will make you smile each and every day, there is NO reason not to have a baby with Down syndrome. All children can be expensive and all of them can be difficult at times. Of my 3 kids, our youngest (who has Down syndrome) has been the easiest so far. In fact, her older sister who is in the autism spectrum may require far more long-term help as an adult... and as yet, there is no prenatal test for autism.


 You can have a "perfectly healthy" baby only to have your child sustain a traumatic head injury in a car accident or from a fall from a bicycle, leaving that child in a vegetative state. You, yourself could suffer an unexpected stroke later today and become far less independent and more of a "burden" for the rest of your life than a person born with Down syndrome.


There are NO guarantees in life. Life isn't fair, and it's not all about you and your plans or pursuit of perfection.


Life is what happens amid all your plans. Life is the fertilizer that forces you to grow into something bigger and better than you had "planned."


In the U.S., you have many freedoms and choices.  
When it comes to prenatal testing, your choices are limited for you.

You can test for Down syndrome, but you can not test for autism. You can not test for future disabling accidents. You can not test to determine if your child will become a brain surgeon or the next Ted Bundy. You can not test for "perfect."

Question what you "know!"
There appears to be a widespread misconception that Down syndrome is a "severe disability." It is not. Not by a long shot! Down syndrome only causes mild to moderate delays. Most children with Down syndrome attend regular school and some go on to college. Many have full-time jobs and live independently as adults and some get married.


Unfortunately many of those in the medical field and society at large often make Down syndrome out to be something much worse than it is.


When my routine screening came back suggesting an increased likelihood that my third child would have Down syndrome, I turned down invasive tests. 

Why? 

Because I never expected perfection.


And what I got...


Is Pure Fabulousness!!




For more updated information on the reality of raising a child with Down syndrome, click HERE.




Friday, March 9, 2012

What Are People With Down Syndrome Like?

Down syndrome is caused by a triplication of the 21st chromosome. March 21st is World Down Syndrome Day because 03-21 works out nicely as a numerical representation of the 3 copies of the 21st chromosome that cause Down syndrome.

So prior to having a child with Down syndrome, I had a certain image in my mind about what people or children with Down syndrome were like. More on that in a minute.

Retarded.

 How often these days we hear people using the word "retarded" when they are talking about someone who did something stupid or talking about an object that doesn't work properly? I've seen FaceBook statuses reading, "Dude made a left turn in front of me and I almost hit him! What a RETARD!" and "My oven is so retarded! It burned the cookies again!"

Perhaps, like I once did, many people have outdated ideas of what people with Down syndrome are like, and the current slang use of the word "retarded" only serves to solidify these ideas.

Before The Skink was a part of my life, if someone talked about having a mentally retarded family member, the image that sprang into my head came directly from turn-of-the-century asylums. A dimly-lit room with a half-dressed person sitting on a chair... rocking back and forth and making weird noises. The expression would have been blank... the eyes devoid of emotion or personality. Perhaps there would be a bit of drool on the chin.

Or maybe the guy from the movie "There's Something About Mary" would creep into my head. An over-weight man screaming "franks and beans!" in a thick voice, and then being teased and bullied by other kids. Sad!

So... what are people with Down syndrome like?


As you can see, my daughter paints a dismal picture of life with a child with Down syndrome! Note the blank expression, the lifeless look and the drool...


So sad! It's like she doesn't even know I'm in the room with her.


Yes, most of the time she sits in an empty room, partially clothed (in a potato sack), just... rocking...


Aaaaaaaahhaaahaaaahaaahaa! Back to reality, The Skink is so amazingly "normal" it might knock your socks off!  She has more personality than you can imagine, and what a personality it is! She has the funniest sense of humor and perfect timing - she always seems to know just how to get us to laugh.

Is it sad to watch how her peers treat her? Um, only if you think it's sad when every single kid at school knows her name and yells "Hi, Skink!" when ever they see her. Only if you think it's sad when the other girls on the playground argue about who gets to help my small-statured Skink reach the monkey bars, and only if you think it's sad when a large herd of children want to sit with her at lunch... heartbreaking, really!


And am I worried about The Skink's future? Will she be able to learn enough skills to live independently?

Well... yesterday The Skink stayed home from school with a slight fever. It was nearly lunch time, but I was busy folding a ton of laundry. Apparently The Skink took matters into her own hands.

I herd noises coming from the kitchen, but I just assumed she was playing... until I heard the microwave go on. I decided I better check, and sure enough, the microwave was on... and something was in it.


Spaghetti-O's! She knew it was lunch time, she chose a good lunch option, she got it out of the pantry and she was proudly cooking her own lunch while I did the laundry! She even already had a spoon in hand!

The can? Well hey... as quickly as my kid picks up new skills, I've made a point of NOT showing her how to use a can opener! I can't afford for her to try out new recipe ideas just yet...

But the answer is "No." I'm not worried about this kid's future! I don't know what she'll want to be when she grows up - - a respiratory therapist? A chef? A grocery bagger? I'll say the same thing I say about my other two kids. I don't care what job she chooses as an adult. I just want her to be happy! And really, I have far fewer worries about The Skink's future happiness than I do about Iraq's.