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.

Wednesday, February 29, 2012

Mouse Remorse

So over the past month or so, we became aware of an extra "pet" in our house... the kind of pet that usually has a partner and can produce more pets at an astounding rate.
It's really no surprise that we would acquire this kind of winter-time pet... goodness knows it had plenty to eat with my littles leaving their crumbs about.



I bought traps that are fully enclosed so that when you capture your pet, you don't have to see the end results of the capture - if you know what I mean. (Can you even imagine Iraq finding a squashed mouse in the kitchen? It would traumatize her for months.) The other benefit of such traps is that they are pretty much child-proof (a good thing in our house). Unfortunately our pet didn't take the bait.

So my hubby went ahead and bought the old-fashioned-type mouse traps and then proceeded to come thiiiiiiiss close to trapping his own fingers... twice. (It's really entertaining to see a 6'3" man's reaction when a mousetrap gives way in his hand.)

Finally he got 2 traps set and placed (all of his fingers still intact), and over the last week our "pet" has apparently been using the set traps as feeding stations... and then leaving.

Until this morning.

Did our little pet have the decency to stick its neck in the trap like a normal mouse? No. I got to wake up to the most pathetic little brown mouse dragging the trap around the kitchen by its broken femur!

So. Not. Right.

You see, I have a real issue with killing critters. Yeah - it's a mouse. I know. But it's a life. (I swear - I must have been a Buddhist monk in my last life.) If the thing had been relatively uninjured, I would have had no issue with driving it out to the countryside and releasing it. No problem at all.

But no. NO... now I have to kill it. I can't just let it suffer with a horribly broken femur (and possibly hip). I have to put it out of the misery that we inadvertently caused it by catching the wrong part of it's anatomy in a trap and mangling the poor thing.

So I found a plastic container and held the trap over the container while I gently lifted the lever, letting the mouse plop down into the container. I've heard that carbon monoxide poisoning is a good way to kill small critters with a minimum of pain, so I trot out and turn on my truck. I open the container and hold it up to the exhaust pipe (but not too close so as not to burn the poor creature). As it got down to the twitching phase, I capped the container, assuming there was still enough carbon monoxide in there to finish the little scrap off.

Just as I was about to deposit the container into the garbage... our pet awoke and started running around the container again.

Really?

Back to the exhaust pipe, and this time I held it there long after the twitching stopped.

Then, as I was dumping the mouse and its clear, plastic coffin in the garbage, I could see that the mouse was female... and lactating.

Yippee... more pets!

And with that, I leave you with some recent pictures of the two people in our house who have seemingly put themselves in charge of ensuring our "pets" will have enough to eat. As you can see, with the weather turning nice, I am encouraging them to eat their treats outside.





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Thursday, February 23, 2012

Stealing Consequences - My Kleptomaniac Kid with Aspergers

 Isn't she adorable? So sweet and innocent-looking?



She steals stuff. She has since she was 2 or 3 years old, and never once have those acts gone unpunished... but how do you teach a kiddo to stop unwanted (not to mention illegal) behavior when she simply doesn't learn from consequences?

Up until about 8 years ago, I was one of the best moms the world had ever seen! I kid you not - aside from his ADHD, my son was one of the most well-behaved kids ever to be born on this planet. (OK - well perhaps I kid a little... it makes my blog more interesting!) If he misbehaved, I quickly responded with a fitting consequence to each act of mischief, and like magic, the bad behaviors evaporated. I was a parenting SUPERSTAR!

You know? Being vain about crap like that is really stupid!

Iraq has opened my eyes to a whole different world of parenting. Those 100-percent timely and fitting consequences?      Pppfffftt!     Yeah - like those were gonna work on HER! No matter how big or harsh the consequence, Iraq has shown she is more deeply affected by her Asperger's and OCD than she is by any consequence handed down my her school, my husband or me.

We have taken and tried suggestions by numerous specialists. We, her teachers and her therapists have incorporated every means known to man to "modify her behavior," stop her behavior... and at the same time avoid disabling, dismembering or killing her.


The flip-side of this stealing thing is that children in the autism spectrum often have a hard time empathizing with other humans. The whole "well, how would YOU feel if someone stole YOUR lip gloss" thing doesn't work.

Until now her stealing has been limited to small items like fuzzy, pink pencils, gum, food items, trinkets, sparkly pens or cool-looking lip gloss. Until now...

Today as I was gathering laundry to wash from Iraq's room...
well...
today, stashed away in the back of a seldom-used drawer I found a cute little purse.


It's a really nice little Victoria's Secret brand makeup bag with a pretty gold chain, a fancy key ring and a cheap (but cute) rubber bracelet.

It was heavy, so I opened it up, only to find that Victoria did indeed have a secret!


Uhhh... that's an iPhone!

For those of you who may not have every purchased an iPhone in the past, they generally run, oh...
about $200 US currency!

It was at this point I screamed unto the Lord...





Aaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!  Aaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhh!

Aaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!

 Aaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhh!  Aaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhh!




...well - you get the idea.

And then I put on the kind of clothing that I could be seen in public in (as opposed to the kind of clothing that I do laundry and work out in), and iPhone and purse in hand, grabbed my car keys and headed to Iraq's school.

Just last week one of Iraq's 2 at-school therapists was telling me she thought the stealing issue was improving. I didn't take that to mean the value of the contraband was going up!

We had an impromptu conference with the principal (who totally rocks), and both therapists. We discussed what ways we will use on our continuing quest to dredge the kleptomania from Iraq. At the end of our little meeting, I thanked the principal profusely for allowing my children to continue attending the school. (She laughed because she apparently thought I was joking.  I wasn't.)



So... *sigh*

It's all in a day's work for this SUPERSTAR mom.

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Saturday, February 11, 2012

Got Bills So I Wrote Up This Ad For My Car - Enjoy!


Is your family too big for a sedan, but you don’t want your friends to see you driving a minivan? We have your vehicle!  No – don’t call the police… I mean we have your NEXT vehicle.

We know how crazy your life is, so we’re listing this vehicle UNDER Kelly Blue Book Value! (We’re cool like that.)

Think of this – now you can get decent gas mileage, not get stuck in the mud, fit all your whining kids in the car AND look semi-cool while you drive around town telling all your kids to shut-up and quit poking or looking at each other or you’ll make them walk home! (We all know you’re not really going to make them walk home, but we’ve all said it, right?) Might even help if you tell them *exactly* how freakin’ cold it is out there – and you’ll know just by looking at the built-in outside temperature gage. If you want to give ‘em a taste of what “cold” feels like, you can put the dual electronic automatic temperature control to use and cool them off while you stay toasty warm up front. Of course you could always duct-tape them to the roof-top rack… but I’ve found that law enforcement officials tend to frown on that.

Now then, if you’re a real glutton for punishment, you can pack up all those kids, hook up your pop-up camper (provided you have a pop-up camper) and take ‘em all camping for the weekend – ‘cause this baby comes with a towing package!

You may even be able to drown out some of the whining by turning up the volume of the AM/FM, six-disc, in-dash CD player… and it’s easy because there are volume, radio and CD controls right on the steering wheel (which is great if your significant other has bad taste in music).

Another great advantage to this vehicle is that when you get so stressed out that you can’t remember for the life of you where you were supposed to be at 7:30 p.m. on Wednesday, the car will remember to turn on its own lights! No – it’s not possessed or anything… it just has one of them new-fangled sensor things.

So for those of you who want it, here’s the run-down of this vehicle’s features:

Color - Blue/Silver – Great condition
Only 61,000 Miles
Automatic Transmission (because who has time to shift?)
All-wheel-drive system
Leather Seats (apple juice-resistant)
Towing Package
Power Driver’s Seat (Because the driver should have the power – right?)
Quad Seating:  Front and 2nd Row Captain’s Chairs & 3rd Row 60/40 Split-fold Seating / Fold-Away Seats
Seven-passenger capability
Side-impact airbags
Cruise control
Anti-lock brakes (ABS)
Air Conditioning
AM/FM with an MP3-capable, six-disc, in-dash CD player
In-dash outside-temperature display
Steering wheel-mounted radio/CD controls
Automatic (but not possessed) headlamps  
Fog lamps
Dual electronic automatic temperature control
Duratec 30 3.0-liter, V-6 engine
Rear Defroster
Power Mirrors
Power Windows
Alloy Wheels

Comes with 2 sets of Keys & Remote Locking/Unlocking Devices


Call now and spend one less day squashing your growing children into one bench seat! Johnny really did do it first, you know.

 

 OK - so I realize most people aren't in the market for a car right now. If not, buy Disaster Flambe for your Kindle or The Littlest Sister for your kids! (Yup - shameless plug there!) Click on either image to go straight to my Amazon pages!

 Keep smiling! It makes people wonder what you've been up to!

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Friday, February 10, 2012

In Which The Skink Went to the Hospital, Pawpaw Went to Heaven and the Family Went on a Journey

And what a couple of weeks it's been! So you know how I posted before that The Skink's lungs weren't clear at her last check up? About a week later she spiked a fever of 104. This after laughing, playing and apparently feeling fine for most of the day. There might have been little signs that we missed - it can be hard to see them because the kid is always so up-beat and happy.

So - back to the ER we went where the x-ray showed cloudiness in both sides of the lungs. She was admitted and went back to see some of the good friends we made during our last visit in November. Any more of these little episodes  and we'll come back to find reserved parking and a room with The Skink's name over the door.


This time The Skink stayed from Sunday, January 29th through Thursday, February 2nd. Just long enough for her to get her degree as a respiratory therapist.






To welcome her home, I created a portrait of her best friend, Cow. Moo.


It's a good thing I got the practice with my art tablet, because on Friday morning we got word that my father-in-law had passed away. You know - not like we had enough stress to deal with or anything.

I completed this portrait of my sweet father-in-law prior to our Tuesday a.m. departure for the funeral services in Chesapeake, VA.


Of course The Skink had been released from the hospital on oxygen, and must have 4 breathing treatments each day. We got a larger (new-to-us) car - a '95 Suburban, and got creative...


Right up until our creativity melted an adapter and almost started a fire. So instead of finishing her breathing treatment, The Skink made do with an iPod and Cheerios.


The Visitation was held on Tuesday evening and the moon was kind enough to dress up for the occasion. I thought it looked lovely!


Iraq and cousin... we'll call her "Dora" because she bears an uncanny resemblance to a certain cartoon character... said "goodbye" to their PawPaw.

My little part of the family arrived early as Iraq generally needs more time to adjust to new situations and surroundings than most. She sobbed uncontrollably for the first hour and spent the second hour tucking notes and artwork into her grandfather's jacket, rearranging his hair and moving his arms around.

Personally I'm a bit uncomfortable with the whole corpse-thing. To me it's kind of like a giant cicada shell... just something left behind when the important part has moved on. I didn't get too close. Just close enough to see that someone had put about 3 oz. of makeup on the body, including cotton-candy-pink lipstick. No - decorated cicada shells are not my thing.


I didn't bring my camera to the Wednesday funeral, but afterward we went to a family-member's house to enjoy the company of tons of wonderful extended family members. Didn't The Skink look cute in her fancy dress?



On Wednesday evening we spent time with my husband's mother's side of the family. We went to the Cracker Barrel... it was the perfect place to enjoy some real family  bonding!


The girls got checkers lessons from their late grandmother's step-brother...


And everybody gathered around to witness the duel.


We were very pleased to discover that Cracker Barrel has a "Low Carb" menu! When my steak arrived, The Skink very kindly offered to cut it up for me.





Thursday morning we went back out to the cemetery for one last visit before our 5-hour drive back home.



This is "Dora's" little sister, "Boots." Isn't she the cutest little thing?


So that is my very abbreviated account of the past couple of weeks. Perhaps I'll fill in some of the details of traveling with an oxygen machine, juggling breathing treatments and how both the hubby and myself were able to stay on our diets throughout the stress and insanity...

...but then, perhaps I won't because I will have fallen asleep, and goodness knows more interesting things will happen tomorrow that I will need to write about.


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