My Budding Photographer

 Yesterday morning, Iraq informed me she wanted to use my camera and she wanted me to "model" for her so she could take pictures. Truth be told, I instantly morph into the biggest goober in front of the camera, so I wasn't overly thrilled with the idea. To say that I am not photogenic is like calling the ocean "a little water." But when I uploaded the photos, I was rather pleasantly surprised to find she had taken some really good ones.

So today when Mimi came over and asked if we wanted to go to the Transportation Museum, I grabbed my back-up camera and put it in Iraq's Hello Kitty Purse. I told her she could take all the pictures she wanted of anything she wanted to take pictures of, any way she wanted to take them. (Grow, creativity! Grow!)

I may be a little biased, but I think she is showing some promise! These are a few of my absolute favorites:

Not too shabby for a kid who just turned 9! Needless to say, I will be doing everything in my power to cultivate this new found form of expression for Iraq.

While Iraq carried her purse to keep the camera in, The Skink carried her own purse... with a change of pants just in case.

The model trains were The Skink's favorite thing! Well, those and the real trains. She seems to really like trains.

(Iraq demonstrates how a train's pistons work.)

(The rocket is part of the museum's exhibits... but both structures look as if they could take off at any moment.)

 We all had a great time and The Skink stayed dry our whole visit and so far, all day today! (Gee - I hope I didn't just jinx our "dry spell."

Iraq... Iraq did GREAT! In the not-too-distant-past a museum visit like this would most certainly have set her off. The lights, the noise, the sights and the crowds are all very over-stimulating for kids in the autism spectrum. I think Iraq is finally getting to the point where she is learning to control her impulses, and better monitor herself in large, public places. I'm SO proud!

The Skink had a melt-down shortly after we left the museum - LOL. Hey... you can't win them all!

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The One That Got Away

So we are potty training The Skink for the 3rd time. Yes - she was fully potty trained last October, and then ended up in the Pediatric ICU with a nasty case of pneumonia. As far as potty training, the timing couldn't have been worse... but is there ever a good time to end up in the PICU?

We got her potty trained again, but then guess what? She developed pneumonia AGAIN!

After her 2nd hospitalization, she lost interest in the whole potty thing. She would use the toilet if we took her there and planted her upon it, but she would also use her pull-up in between bathroom visits. *sigh*

Now that school is out for the year, I am making potty training a top priority! No if's, and's... and tons of butts!

The Skink has been doing fairly well... provided I remember to take her to the bathroom every hour on the hour. She has made some mistakes, and while we have always rewarded her for using the potty, we are now doling out a mild punishment when she makes a mistake... you know - trying to up the ante!

We had a great day today with no accidents at all... until this evening. You see, The Skink has not been initiating using the bathroom on her own. She usually waits until I ask her. It put a red flag up when she started trucking up the stairs in the middle of her favorite show. So I stopped her with the intention of "checking" the situation out.

As I pulled her drawers to the side to peek, something escaped...

...and then...

rolled...

down...

the...

stairs...


Aaaaaaaaaaaaaaaaaaaaggggggghhhhhh!

Yes - I had to chase poop as it rolled down the carpeted stairs in my home!

Ah - the things we do as parents!

As cute as she is, she got in some BIG trouble... after I was done gagging...

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Brief Weekend Update

 With summer settling in, we enjoyed a jaunt to Mimi and Pop's lake house this weekend to enjoy some swimming and boating. Iraq has morphed into her warm weather fish form and has mastered diving from the higher of the docks.

After some time in the water, Iraq came out to warm her pruned skin in the sun.

"Mom!" I heard her exclaim. "Mom, look! A dragonfly!"
A lovely, small dragonfly with gossamer wings had settled on her arm, perhaps to warm in the sun also... but strangely, no matter what movements Iraq made, it stayed with her. Sometimes it would fly up a bit, only to settle back down on her shoulder or her other arm.

"I wonder if Nana is sending you a message through the dragonfly,"
I said to her. As the last word skipped from my lips, I what Mimi would think. Mimi laughed a little at my words, but Iraq's eyes lit up at the idea of her paternal grandmother sending her a love note from heaven.

"Really?" Iraq asked me. "So you really think Nana is saying 'Hi' to me?"
I could feel Mimi eying me, but with a certain resolve in my heart, I said, "Yes I do. I think Nana wants you to know how much she loves you, even though she died while you were still growing inside of me."

At that moment, the dragonfly's wings started to beat, lifting it into the air. It flew from where Iraq sat on the lower dock... up, up and straight over to me, alighting on my right shoulder as if to whisper its appreciation to me.

Beaming from ear to ear, Iraq bounced up the steps and ran over to me. She stuck her finger out, and the dragonfly climbed onto it without hesitation. She took it back down to the other dock. Mimi quietly asked if we got many visits from Nana. I assured her that though they took on different forms, we certainly did!

Nana's dragonfly enjoyed the beautiful summer day with Iraq for quite some time, allowing Iraq to reposition it to a shoulder, knee or hand during lunch time.

When Iraq had eaten she eventually decided she was ready to swim again and gently set the dragonfly on one of the boats hanging in the boathouse, where it stayed for a little while before flying off.

 
The rest of the day was spent enjoying the water, blowing bubbles and riding the boat, but perhaps Nana's firefly was the highlight of the whole, wonderful day!

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Horses and Ponies Everywhere! Our Horse Themed Birthday Party!

Iraq is turning 9 and she has never had a birthday party - at least not one where we invited other children. Because she get so overstimulated so quickly, we never thought it would be a good idea... at least not until this year.

This year we got brave! Mid-year resolution-type brave! (I have been writing monthly articles for SpecialNeeds.com)

So in keeping with the "brave" thing, we decided to do a combined party for both Iraq and The Skink - The Skink's August birthday makes it hard to invite kids from school, so she's never had a "real" birthday party either. When I asked them what kind of party they wanted, Iraq immediately answered "A HORSE party!" The Skink agreed happily.

Since funds have been tight, I needed to figure out how to do a horse-themed birthday party on a dime (or maybe 2 dimes...)

So, first the invitations:

I found some art I liked on the internet, and then took that idea and reworked it into something that would do well for the party. I threw it into a Word document and found a font Iraq liked. I already had some card stock in a multitude of colors, and voila! The brown ribbon for the bow cost less than $1, and really added a nice touch.

I roamed about on Pinterest and asked friends on a horse-related internet forum and gathered some nifty ideas, one of which was to give each child a hobby horse which could then be used for a variety of horse-themed games during the party. Well... I don't know if you have priced hobby horses lately, but if it had come down to buying them, it would have been out of the question... by a few hundred dollars. Solution? I made my own out of remnants that I already had in the basement! I stuffed them with the stuffing from old pillows that we no longer needed.

I needed awards to hand out to the kids, so I found a tutorial on how to make rosettes HERE. Instead of using buttons, I found that poker chips (which we already had) fit perfectly! I got the ribbon out of the bargain bin at WalMart :-) Didn't they turn out cute?

To carry out the theme, I printed out labels using the same art that I did for the invites and stuck them on water bottles from the Dollar Store with clear packing tape. A borrowed container from Mimi, a little ice and we made "Fancy Water!"

 Horses also like carrots (but unfortunately not all kids do) so I made "carrots" using saran wrap folded into a cone, filled with Goldfish Crackers and tied off with a little green ribbon. I also found some little trophies in the party section of WalMart and they were not expensive at all!

Since the colors were pink and brown, all I had to do to frost the cake and cup cakes I made was add a few drops of red food color to regular 'ol white butter-cream frosting and mix it up with a blender. Brown? Chocolate! Duh :)

Since I'm better at sewing and drawing than I am at frosting or baking, I embellished the cupcakes with the same artwork printed on card stock, cut into small circles and hot glued onto toothpicks. They were so easy it's almost silly!

I set up all the horses, carrots, ribbons, food and fancy water just before the guests arrived and it looked like this:

I just happened to find blue napkins with white polka-dots in the party section... and they matched the blue ribbons I made. How cool was that? Don't mind the awkward frosting on the cake. Frosting cakes isn't my thing - LOL. At least the colors were cute!

Here are some other Horse Themed Party Ideas that I collected while I was putting this party together:

Games: (Be sure to have awards to hand out :)

Horseshoes (you can find cheap plastic sets online for less than $5)
Stomp the Fly (See description below)
Dangling Carrot - Use twine to tie around carrots and then dangle from a tree branch, swing set or hand-held stick. Kid who eats the whole carrot first wins.
Bobbing for Apples - Instructions Here

Horse Races - If you are giving out hobby horses, have the children race them. If not, just have the children pretend to be horses.
Hunter Over Fences -   Set up kid-safe obstacles for the kids to jump over (think Olympic Show Jumping). Of course any variation will do, so get creative with your obstacles.
Sugar Cube Races - Same idea as egg-and-spoon races, but with sugar cubes instead of eggs.
Lasso the Horse - Set up a child's rocking horse behind a line in the grass or on the floor. Have children stand behind the line and attempt to toss a hula-hoop or large embroidery hoop over the horse's head.
Bingo Horse Races - (Use hobby horses if you have them) Mark off a grid about 6 squares wide and 8 squares long - use tape indoors or chalk outdoors to make your grid. Number the squares 1-6. Mark a starting line at one end and a finish line at the others. Have 6 kids line up on the start line - then roll 2 dice. The number on the first die dictates which kid can move (by the row they are standing in). The second die dictates how many spaces forward the kiddo can move... so a 3 and a 1 would mean the child in row 3 can move 1 space. First kid to the finish wins.
Saddle the Horse - This game is basically like pin the tail on the donkey, but uses a printed out picture of a horse and cut-out printouts of saddles. Kiddo who places her/his saddle closest to the horse's back wins.

Make your own horse Pinata tutorial (they show a dog - just modify it and make a horse!
Water Bottle Label tutorial
Hobby Horse tutorial (For goodness sake - the reins come off the bit at the horse's mouth - not behind the ears!)
Carrot Napkin Holders



And here are a few pictures from our wildly successful day that I spent less than $50 on (total!).

We did this game called "Stomp the Fly!" You tie a black balloon to each kid's ankle and have them try to pop each others balloons. The last kid with a full balloon on their ankle wins... and I have to say the entertainment value of this game for the adults who are present is priceless!

(Her balloon got stomped... poor thing!)

Did the Birthday Girl have fun? She did amazingly well today - and perhaps this expression says it all!

(Me and my shadow... I mean camera...)

After the presents we did the pinata... but unfortunately the thing had apparently been fashioned from cement or something because after each kid took 10 whacks...

...we let the dads try...

(I love this picture - I think it looks like he just took a bite out of it!)

And FINALLY...

Yes - a fun time was had by all! No meltdowns, no regrets. Just one great (and inexpensive) party!

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Should I Keep My Baby with Down Syndrome, Or Should I Abort?

"Should I Keep My Baby with Down Syndrome, Or Should I Abort?"
With new and better genetic tests available, this question may present itself to a higher number of expectant mothers / parents each year. And this may be one of the biggest questions these parents will ever be challenged to answer. Either choice a person makes in this matter has its own deep set of consequences tied to it.

I'm addressing this question today because while reading through my "Feedjit" feed (it shows me where visitors to my blog have come from and by what search terms) I found the following:

L., Louisiana arrived from google.com on "Adasperdown Town: (Post Title)" by searching for "i am resentful because no one encouraged me to keep my daughter with down syndrome."

Upon reading that, my heart broke into a million pieces. 

When we received preliminary blood test results that our 3rd child might have Down syndrome, the doctor pushed us to have an amniocentesis. He insisted that we "find out" so that we could "do something about it."
The doctor's insistence made it very clear that he expected us to abort the pregnancy if we learned our baby had Down syndrome. This was the very same doctor who, only days before, was able to tell us that our unborn child was a girl at only 13 weeks gestation.

When the people around you expect you to react in a very specific way to something, it can be hard not to believe that they may be right. We grow up bowing to peer pressure - wearing the "right" clothes, talking the way our friends do, taking part in activities with our peers... we work our whole lives trying to fit in (well... at least most of us do). Most of us don't walk around wearing bananas on our head and floral-print body-paint paired with a skirt made from deflated balloons because it wouldn't be socially acceptable... unless, that is, you happen to be Lady Gaga. Provided you are not Lady Gaga (or simply insane) you wear clothes. Most people will go so far as to wear a certain style of clothing that reflects current fashion trends (as opposed to wearing a circa 1973 light blue polyester jumpsuit).

(Sexy, no?)

 We do a lot to fit in, don't we?

Yet a decision regarding whether or not to continue a pregnancy should not revolve around what other people expect, or even what your doctor expects, but around what is right for YOU.

But how can you possibly know if having a child with Down syndrome, or aborting that child, is the right thing for you if you have no prior knowledge of parenting a child with DS? 

The information your doctor might give you on Down syndrome might sound very frightening! Your baby could have heart defects, bowel problems, be near-sighted... and then there's the whole "mental retardation" issue. This probably wasn't what you were expecting when you decided to have a baby. How could you possibly parent such a child? Could you even love this child?

It's a lot to wrap your head around, isn't it?

I'm not going to tell you what to do. I'm not going to tell you what the "right" choice is. That's a decision only YOU can make. But what I can do is offer up some things to think about that may help you make a choice that you can live with.

That long list of "problems" your doctor may have discussed with you? Any child without Down syndrome can have some or all of those health problems too.

According to HealthyChildren.org, "About 2 percent to 3 percent of children are considered intellectually disabled (formerly called mentally retarded). Their general intelligence is significantly below average, and they have difficulty adapting to their environment"

What that means is that 2 or 3 out of every 100 children born have some form of intellectual disability. (Most of them do not have Down syndrome.) Any child can have an intellectual disability for any number of reasons. 

 As for heart defects,  The March of Dimes website reports that: "About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States." Here again, any child can be born with a heart issue - but when you are pregnant with a baby who does not have Down syndrome, doctors don't sit you down and list all the things that "could" be "wrong" with them.

Another thing to keep in mind is that many, many children with Down syndrome DON'T have a long list of medical problems. Many are perfectly healthy kids.

I've heard people say that they don't feel equipped to parent a child with a disability. (I suppose those people believe that there are some of us who grow up dreaming about having a disabled child?) 

 (Parent equipment)

The truth of the matter is that if you are ready to have a child, and the child in your belly was planned and not accidental, you are equipped. There are no guarantees in life. Even though you can find out if your child has Down syndrome before he or she is born, there are hundreds of thousands of other things that medical tests can't tell you. One of the first things you will learn about parenting (any child) is that you have to learn to parent on the fly. You have to learn as you go. 

As the mother of 3 children, I can say that it has not been harder to parent my child with Down syndrome. It has just been different. I will also add that I must also parent my other 2 kids without DS differently than each other. Because you know what? Each and every child is different and requires different things! It's true! Ask any parent who has more than one kid :-) Not harder. Just different.

Perhaps the most frightening part about learning your unborn baby has Down syndrome is simply not knowing what to expect. You may have certain ideas about people with Down syndrome, and not all of those ideas are pretty. I would suggest you not make a big decision based upon what you *think* you know about Down syndrome. Did you know that many, many people with Down syndrome now graduate from high school with academic diplomas? Many go on to have jobs and live independently? 

Are you worried about how others will treat your child? Remember, as with the rare cases of child abductions, we only hear the negative reports of the mistreatment of those with disabilities. For every one bad story, there are millions of good stories that we don't hear.

And if you already have other children, will they resent a sibling with DS? Will they love him or her? Will they be tied down by their sibling if something should happen to you? While I can not answer these questions for everybody, I can point to a study that found that "88 percent (of siblings) said they felt they were better people because of their sibling with Down syndrome." (Click Here to see the entire study.) How many kids out there would tell you that their "typical" sibling made them a better person? (Are you laughing yet?)

 In fact, here's a blog written by a wonderful woman who grew up with an older sister who has Down syndrome. It couldn't have been too bad, because you know what she did? She and her husband adopted a little girl with Down syndrome.

Another misconception is that people with Down syndrome "suffer." You might hear someone say "I don't want to bring a child into this world only to suffer." I'm happy to say nothing could be further from the truth! People with Down syndrome don't "suffer" any more than any other regular human being. In fact, my own daughter does things just to get me to laugh. She loves to laugh and she loves to make other people happy.

If you spend a few hours reading other first-hand accounts of what it is like to have a child with DS, and you still think that you would be unable to parent such a child, don't discount the possibility of adoption. There are actually waiting lists of people who want to adopt children with Down syndrome? (Click here to read an article about waiting lists for babies with DS.) While this article was written in 2006, it is still true. In fact many families are adopting children with Down syndrome internationally!

On a personal note, I'm going to interject a little story... Right now we are arguing with our school system to be allowed to have out daughter repeat kindergarten. You see, The Skink was born 10 weeks prematurely and shouldn't have had her birthday until about a month after the age cutoff for starting school. Since the school system bases starting school on a child's actual birthday, they put her in kindergarten this year. We just want her to have one more year and not grow up being the youngest in her class... BUT... since she reads well above grade level and did so well in kindergarten, the school system doesn't want to let us hold her back! See... so I can't say raising this child doesn't have its issues. LOL - just not always the issues you might expect.

I also understand there may be another side to the coin. If you are pregnant with a baby you did not plan and do not want - all medical issues aside - then it comes down to a question of your personal beliefs about abortion. It is a deeply personal decision and one you must make based only upon what is right for you.

For anyone who would like more information about what it's really like to raise a child with Down syndrome, please take a peek at the following links:

One Dad's Journey to Acceptance

My own listing of Public Resources and personal stories related to Down syndrome

Blogs by and about teens and adults with Down Syndrome

Parent Blogs About Raising Children with Down Syndrome

One mom's wonderfully written birth story

If you have found my blog because you are faced with your own dilemma, my heart goes out to you. I hope my words have been helpful in some small way. 

If you are here because you are one of my regular readers and/or already the parent of a child with DS, then you are lucky - lucky because you already know how wonderful it can be.You already know just how overwhelming your love can be for a child you probably didn't plan on and possibly didn't feel equipped for at one time in your life.

(Does this child look like she's "suffering" from Down syndrome. Um... no! She's pure awesomeness in pink!)

Am I wrong? Please comment! Please add your own thoughts if you think they might be helpful for someone faced with such a big decision. I do ask people to remember that people of all faiths and religions are welcome here.

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