The Face of Adoption

One Day after Turner Came Home

Why?

Why is a fundraiser for Reece's Rainbow so important to me?

Do you really have to ask? I mean REALLY. These kids are living without a mom and/or a dad. That alone is reason enough.

Other reason, do you want to know a dirty little secret about adoption? The vast (and mean by magnitudes) majority of people who adopt want Healthy Little Girls As Young As Possible. (AYAP)

That's why China is/was one of the leading countries from which to adopt. They have mostly little girls available for adoption. Most generally, parents received their little girls at the age of 9'ish months old.

In any country in the adoption world, older girls, all boys and children with ANY kind of disability are often shunned. You know what happens to kids who grow up and age out of orphanages? They are turned out on the streets with little preparation to be able to survive. Children with disabilities go to institutions with very little chance of survival either. I have 3 little boys, one of whom has a disability. This thought keeps me awake at night. (I will say the one bright spot I have seen is our 20 year old son in Ethiopia. He was a lucky one. He had someone pay for his education. A sponsor. Now when he leaves the orphanage he is in, he will have a job. A chance. That is highly irregular in the world of orphans.)

Not all of the children on the RR Angel Tree will find families. However since Andrea started Reece's Rainbow 4+ years ago, more than 300 children have found families. I venture to say very little if any would have found a family had it not been for Reece's Rainbow. That is huge. Amazing even.

That is why this organization and it's fundraiser are important to me. I take it personally.

Who is Your Favorite?

Did you check here: http://reecesrainbow.org/sponsorship/angeltree2010/angeltreesponsorpage

Who are your favorites? Are you spreading the word around? Let me tell you, even a little bit of money could be the difference in these kids finding a mommy and daddy or being stuck in an orphanage.

Click on the link above. Check out Carlene with her blond hair and pigtails. Isn't she a sprite of thing? Such a sweetie. Judson's favorite is Andrew G. He says, "He looks like Sawyer only his face isn't as round" My two ultimate favorites are from China. Garrett, you'll be able to see if you scroll down. Andrew (China) is listed under the older boys section. He's soooo old, 6 to be precise.

All the children on here are deserving of parents. Some will find them, most will not. Sometimes the only thing standing in the way is money. To come up with $20,000+ in one lump sum can be daunting. To have a trust fund with money in it, is very helpful. The perspective parents do not get the money until they have almost completed the adoption.

I dare you to click on the link and not find a favorite. Just can't be done.

Christmas Tree Angels

http://reecesrainbow.org/sponsorship/angeltree2010/angeltreesponsorpage

Click on the link above and check out these angels. Are they not the most precious little ones you've ever seen?

If you have a few dollars to spare, please consider a donation. There are so many families who would adopt if they had the funds to bring the child home. They have the funds to raise the child but the adoption can cost anywhere from $20,000 to $40,000 per child. That is a lot of money. If some of that cost were recouped through donations, they would love to be the new mommy and daddy to one of these precious children.

Tell me which child captures your heart. I have a few favorites I'll post about in the coming weeks.

Trick or Treat

I'm not saying Ansley thought she was Da Bomb BUT.....

31 for 21 Day 31

I Hope You Dance

Another funny story:
I bring Sawyer out of the bathroom with his cow-self. He runs around saying (rather loudly),
"Moo, Moo, MOOOOOOO" (ala Click Clack Moo, Cows That Type) He does this several times, talking over the teacher and everyone else. Now, to be fair the other kids were equally excited about their costumes and all were talking over the teacher. So, he's running around the room, mooing. Every so often, he stops, grabs his tail, and says, "nice tail".
Here are a few of my favorite costumes:
I hope a month of hearing about Sawyer will open your hearts and minds to those with 'Special Needs'. To be honest, I think it's the ones without Down Syndrome who are the ones with 'Special Needs'. Truly, I think Sawyer has it right. He loves without question. He laughs with ease. He doesn't judge by outward appearance. He sees past that and truly sees what is on the inside. People always say "don't judge a book by its cover" but they don't mean it. Sawyer gets it. He sees what God tells us to see. It's an awesome gift to be able to live like that. We should all be so blessed.

31 for 21 Day 30 A BIG Deal

Kindergarten Parade

Sawyer's Class

This is a BIG DEAL
Sawyer enjoying being the center of attention.
Funny story
I headed to Sawyer's class early today.
I wanted to help Sawyer get dressed for the parade.
First chance I got,
I asked his teachers about Daniel.
I wanted to meet Daniel.
That is all Sawyer talks about.
Daniel.

They told me
Daniel is in 3rd grade.
Daniel and Sawyer are BFFs.
The teachers
could not say enough about their friendship.
They wait for each other on the playground
Then happily go off and play together.
Daniel just happens to have 47 chromosomes.

So I figured, dangit, I won't get to meet Daniel
since he is in 3rd grade.
I mean what are the chances in a school with over 900 kids.

I head outside to watch the parade.
I step out into the lane to get a picture of the crowd.
As I do, I step on someone.
I look down to apologize.
I notice a little guy with striking Down Syndrome features.
I bend down and kiss his finger that I had stepped on.
I ask him if his name is Daniel.

He smiles and says "Yes".
I say, "I'm Sawyer's Mom"
IMMEDIATELY
He reaches up and hugs me.
I turn him around and point to Randy
and tell him "That's Sawyer's Dad"

He motions for Randy to come closer.
Randy does.
Then Daniel hugs Randy.

When we got ready to leave,
both Randy and I got hugs from Daniel.

It's pretty special to be Sawyer's Mom.

31 for 21 Day 29

Just 'cause

The socks were there to keep him from grabbing those tubes and yanking them out.
Tomorrow should have pics of Sawyer's Kindergarten Halloween Parade.
Stay tuned!

31 for 21 Day 28

Thankful Thursday
(it is Thursday, isn't it?)

How could I not be the happiest Mom on the face of the earth? Look at those faces. (They have not morphed into teenagers yet)

Of course, there is one big guy half way across the globe that I wish was in this picture. Hope you are doing well sweet Tamirat!

31 for 21 Day 27 (In which we celebrate)

Happy No. 6 Big Boy

You make us proud each and every day!
You make us happy each and every day!
You make us work each and every day!

Such a blessing!

31 for 21 Day 26 (I SWEAR He knows his letters)

Here, you'll see Sawyer struggles with focus. One reason for this is he had been working with me for about 30 minutes. That's way too much for him at one time.

You'll also see that he can and does recognize lower case letters. He's been doing this for over a year and yet each teacher that 'tests' him for this says he does not demonstrate knowledge of his lower case letters. Frustrating, no?

31 for 21 Day 25 (Learning to Read)

Reading and Down Syndrome

There are lots of ideas out there about teaching children to read. To be honest, I've not researched enough to know which is best. I just know that Judson was a whole word learner (vs. Phonetically breaking it down by sounds) and I can see that Sawyer learns much the same way. So I tried an 'experiment'. Once or twice a day(while Sawyer is sitting on the potty which is the only way to get his undivided attention), I go over sight words with Sawyer. I started with things like family names, etc. Then I decided to go with words in a book. Not just random words but ALL of the words in a book. I picked Dick and Jane because it's repetitive and Sawyer needs repetition.

Here is a sample of him reading his book. Sorry about the quality of the video. I was trying to film and direct the whole thing while his brother and sister were in the other room making oh so much noise. (might need to turn up the volume to help you understand his speech)




Now, how much this translates to other books is yet to be determined. I will say that he can pick out these same words in other things. (books, magazines, etc) We still have to work on tracking and how much he is comprehending. It's a good start! You might have heard him say "Mommy happy". It's a big deal for him to make Mom happy. I admit I use that to my advantage.

*Disclaimer* I am not a professional teacher. I do not claim this is the way for YOU to teach your child to read. I am just showing the way we are doing it at our house. I believe that mommies and daddies know their kids best and are the best at figuring out what works. My only advice is to 'trust your gut'. We only get to work with Sawyer maybe 10-15 minutes a day because he is in school from 8-4 M-F. We have been working on this book for 2-3 weeks.

I'll post more of what we are doing at home over the next few days. You'll see how he struggles with some words and how he tries to divert attention to ANYTHING besides what is being asked.

31 for 21 Day 24

Imaginative Play

Goodness, Sawyer is the best at this. He'll find a stick(or something else that the rest of us would just overlook) and before you know it you're involved in the reenactment of a movie he's seen or story he's heard. It might be a 'sword' (usually a mop from a play set or a toy guitar or anything that might somewhat resemble a sword). He'll hand it to you and you're suddenly the opponent in a sword fight. Or perhaps you're reenacting a scene from The Apple Dumpling Gang or Swiss Family Robinson. You have to be on your toes to know which scene you're playing out. He moves quickly and with few words. A couple of favorites: The anaconda fight scene in Swiss Family Robinson and the scene in Apple Dumpling Gang when the kids get the 'drop' on the Hash Knife Gang. He also likes a scene from Babes In Toyland where the evil guy shrinks the good guys. You have to know your movies. So study up before you come visit!

Here he is showing off his Halloween costume. He wanted to be the Huntsman from Snow White. You know...the guy who takes S.W. to the forest at the Queen's order and is supposed to 'get rid' of her. He wanted Ansley to be Snow White but she has different ideas. Isn't he looking all 'growny' lately?

Getting a big boy look about him.
BTW, can you guess what Pooh's signature color is?
She also has hot pink sequined shoes to complete the ensemble.

31 for 21 Day 23 *edited*

What it looks like?

A scared Daddy. (He sucks his bottom lip when he can't 'fix' things)*edited* It should be noted that at this point, we were being told Sawyer had a different heart defect. One that would require 3 different heart surgeries just to get him to a point for a heart transplant. You can understand the stress we were under. It was not until they discovered the PAH that they ruled out the other heart defect and decided upon AV canal. Medicine is NOT an exact science.

Transporting from one hospital to another.
This was the day they transported Sawyer from the hospital of birth to the children's hospital. It was very scary for us although I'm pretty sure Sawyer did not mind.

You might notice he did not have oxygen tubes or feeding tubes. They had not fed him since he was born. They assumed he'd have surgery fairly quickly and did not want him to have food in his system. They had only given him IV fluids. As for oxygen, the typical mode of operation with heart defects is not to give them oxygen if their O2 sats are in the 80s or above. If the body never experiences the oxygen saturations near 100, it does not 'need' that. At that point, he had not been diagnosed with PAH so they were going without oxygen. He was about 5 days old at this point.

31 for 21 Day 22

How is a diagnosis of Down Syndrome confirmed?

Typically, a doctor will notice 'markers' for Down Syndrome right after birth. In our case the markers were noticed prior to birth. (nuchal fold, heart defect, shorter nose) Since we did not have tests done prior to birth, they confirmed the diagnosis after birth. They use a test called a Karyotype.

In Sawyer's case, they drew blood. They tested 6 cells that all mapped out with the extra chromosome. Since 6 cells all showed triplicated 21st chromosome, he was diagnosed with Trisomy 21. As I said before 95% of all Down Syndrome diagnosis are Trisomy 21 so this was not a surprise. The only surprise is this might be the first and only time Sawyer has fallen into the 'norm'.

Side note:
I've read several blogs whose diagnosis has changed from their original diagnosis. One person had the T21 diagnosis. Then when she was diagnosed with Leukemia, they biopsied her bone marrow and did another karyotype. They then found out that her bone marrow did NOT have T21. Weird, eh? On another blog, the child had been adopted and had the diagnosis of Down Syndrome. When they got home and did another Karyotype, (by swabbing the cells in the cheek) she was said to have only 2 (21st) chromosomes. Finally, after many tests they took cells from behind the ear. There they found triplicated chromosomes. All that to say, even doctors get it wrong every once in a while.

What does a karyotype look like?

Sawyer's Designer Genes

31 for 21 Day 21

Mobility

With that extra copy of the 21st chromosome, comes low muscle tone. With that low muscle tone, sometimes you wonder when they will go from this:


To this:

And then they get there and you wonder, why you ever worried.

Happy 21st of October!
Be sure to click on the Emma's Hope button on the right.
Exciting times!

31 for 21 Day 20

Here's what I see....

A very independent young man climbing the stairs without using the handrail!(his latest "I do it MYSELF!")

Two silly kids showing off their Halloween socks. (Every picture I took of Ansley on this day had her head tilted to the right. Don't ask me why)

31 for 21 Day 19

Some more sights from the Botanical Garden


The average person might look at these next 2 pictures
and think:
"Nice Water Features"

Not Sawyer, he looks and says:
"Swimming!"

31 for 21 Day 18

Family Time

We took a trip to the Botanical Garden this weekend. The weather was fabulous and the kids needed to get out and enjoy it.

This time around, we let Sawyer have some freedom. He is going to be 6 in just a few days, so he does need to learn to stay with us and not wonder, etc. So, no stroller and no 'leash'. He did pretty well for the most part. (ie, reminding him if he did not stay with Daddy he could not watch Polar Express when he got home) Towards the end, his patience was wearing thin and he was tired. (Meaning Dad had to carry him part of the way but not much)

More tomorrow....

31 for 21 Day 17

Open Heart Surgery

Better than 50% of children with Down Syndrome,
have congenital heart defects. Sawyer had an AV Canal (very typical)
and his Mitral (I think, could have been tricuspid) valve was leaky.
The VSD closed on it's own but the ASD and valve had to be repaired.
This can usually be done when the baby is weeks/months old.
With Sawyer, he had the added issue of PAH.
He's the 1 in a million case.

Notice the "I Love You" sign Judson is giving him.

Did you know he was less grumpy after this surgery
than he was with new teeth coming in?
At this point, he was not on anything more than Tylenol.
He was a ROYAL PAIN when his teeth came in
but didn't really show any grumpiness
with his heart surgery.
Go figure.

31 for 21 Day 16

This picture makes me smile.

Look at that tongue. Whenever he'd get hungry (ie, it was close to feeding time-which was every 3 hours via NG tube), he'd start sucking on that tongue. LOVE IT.

31 for 21 Day 15

Do you feel having Sawyer (with all his 'special' needs) takes away time from your other children?

Absolutely, NOT!
Each of our children has their own 'special' needs.
Each of our children has their own unique gifts.
Each of our children get special Mommy/Daddy time.
Each helps the others to become the best person they can be.
I think that is pretty darn awesome!
Even more awesome?
I get to witness it each and every day.

Just a little Extra

http://www.reecesrainbow.com/atriskwaiting.html

Take a good look at that list.
Yesterday, there was a little girl named AnneMarie on that list.
Today, she is not.
Not because someone decided they needed a little girl in their family
and committed to adopting her.

Nope.

AnneMarie is no longer available for adoption.
You see.
AnneMarie died.

She died waiting for someone to love her
as their very own little girl.

She was in the orphanage likely because she had Down Syndrome.

Today, she is in Heaven.
In Heaven, she is seen as perfect.
In Heaven, God celebrates her.

31 for 21 Day 14

How Judson helped

Sawyer spent quite a bit of time in this saucer.
We were trying to help him get his legs stronger.
Judson spent a lot of time entertaining Sawyer.

You can see by the picture
They had a great time together

One day, I was not in the den with them
when Judson came in and said something like
"Mom, Sawyer wants Cheerios"

I said,
Judson we don't give Sawyer
Cheerios because he might get choked.
(We were still working on how his tongue moved
food around in his mouth)

Judson said
"No he won't Mom"
He ate my Cheerios
And didn't get choked.

I scrambled in there
to find Sawyer happily munching
on Cheerios.

I think it was at that point
I finally realized Sawyer was going to be okay.

31 for 21 Day 13

Testing

The word strikes fear in all parents, no matter what your child's abilities.

Sawyer had some tests given over the past few weeks to determine his continued eligibility for Special Education. Yes, it was just a formality but rules are rules.

I guess the thing that is always annoying is how little that piece of paper really tells someone about my son. It hits the surface and gives you a general overview but not the REAL SAWYER.

I suppose that happens with anyone who is tested. Just give me the facts as they stand on that day. Don't get all caught up in emotions or the reality of life. Just facts as they fit on the paper.

Some of the things that his tests shown:

His speech is moderately/severely delayed and thus his communication skills are poor. This can cause a huge problem at school. (or anywhere else for that matter) If he cannot communicate with his peers or express the knowledge that is rumbling around in his head, he must not have that knowledge. We (Randy and I) know that knowledge is there. It will/does come out but not as quickly as a teacher would like to receive it.

He refused to do some parts, so I guess that did show some of the REAL SAWYER.

His physical development is behind. He cannot jump or run.

So, what does one do with such knowledge? Well they've added more speech and more PE since the beginning of the year. Unfortunately, they have also doubled the class size since the beginning of the year. This is distressing since this reduces the 1-on-1 time. Therefore, we are left to decide "is he getting enough from the school situation or is it time to consider alternatives". In the end, the only alternative is Home School. Not that big a stretch since we already do it for the other 3. Plus, the school would still provide speech and we could add back his private OT. What to do? Time will tell. Nothing is ever easy nor should it be entered into quickly.

So the tests were given. The evaluations made. In the end, there were no surprises AND he got extra speech and PT out of it. So, it's not all bad.

On a side note, (you parents of a child with Down Syndrome will get a kick out of this) the teacher seemed surprised that Sawyer does not generalize well. This might not be such a surprise if you realize that Sawyer is the first child she has ever had with Down Syndrome in her 12 years of teaching school. Anyway, Randy pointed out that "yes, Sawyer has difficulty generalizing BUT if given enough repetition, he will be able to make the connections"

31 for 21 Day 12

Reading

I am working with Sawyer on his reading. We are working on sight words and then picking out those sight words in our book.

I have written the words to one of our Dick and Jane books on index cards. (one word per card) Once Sawyer starts recognizing each word on the index card, we work on picking them out on the pages of the book.

He's doing well and I expect over the next few months he'll be able to read all the words on the page. (I will provide a video soon)

I also expect we will have to do some work on tracking. Sawyer has low muscle tone. It is something that affects roughly 80-90% of kids with Down Syndrome. Hence, the need for OT and PT and Speech services. It's easy to understand the large muscle group in the legs and arms. You often notice this in his gait. However, this low muscle tone applies to other areas too, such as the eyes, tongue as well as internal muscles that control bowels, etc. He suffers bouts of constipation because of the low muscle tone in his trunk area. You also notice it in the tongue thrust as he gets tired. And I believe he has issues tracking words (coordinated left to right movement of the eyes) on the pages of books. Tracking issues occur quite frequently in children of all abilities. Most kids just complain that they do not like to read or that their eyes hurt. Usually, it's just chalked up to 'he's just not a good reader' when in fact, it's an eye muscle coordination thing.

So stay tuned for the video of Sawyer reading. My goal is to have it by the end of his kindergarten year!What's this picture have to do with reading? Not a thing.

31 for 21 Day 11

Therapy


In general, I like therapy.

I remember when Sawyer was first born
someone from DSAA called me just to talk.
One thing that she said that resonated in my mind
If your typical child needed help in math, you'd get them tutor.
So if your child with Down Syndrome needs help,
you get him a 'tutor' (of sorts).
That made sense to me,
If my child is lagging behind,
I would seek help for him/her.
In fact, I have for more than one of my children.

On the flip side of that, I've known families
who had their child in therapies 8-10 times a week.
I don't do that.
I try to balance out all my families needs.
8-10x/week is way too much for my family.

When Sawyer was just a few months old,
we started him in Occupational Therapy (OT).
Not so much for fine motor skills but for help with eating.
OT? you ask. Not speech therapy?
Well, in this city there are very few Speech Pathologist.
Most either work for hospitals or the school system.
Very VERY few work in private practice.

So Sawyer has worked with an OT since he was maybe
6 months old. The OT helps him work on fine motor skills.
(at first it was how to move food around in his mouth, then we progressed to:
eating with fork, dressing, cutting with scissors, etc)

For about 2 years we had him working with a
Physical Therapist (PT)
He worked on walking, climbing stairs, core muscle strengthening, etc.

Once we started school, we stopped private OT and PT.
(Accept in the summers when we still do OT)

He gets OT, PT and Speech in the school now.
As of the latest IEP, he gets 2 hours of speech
a week (group setting) and I'm not even sure
about PT. It's changed since last IEP but
I know he gets additional adaptive PE plus other
PT type help.
OT? Not sure on that.
What the schools do, is the OT and PT come to the class
and coach the teacher on what to do for the child.
So it's really a work in progress.

To tell the truth, the main reason we do not
home school Sawyer is the fact he gets
2 hours of Speech every week. That is huge.
That is something I cannot do at home.
Yes, we could have the school do it and still home school
but this works for us.

31 for 21 Day 10

Check this out: http://www.companyddancers.com/home/

And just so you get a Sawyer 'fix' for today:One of the BIG deals for Sawyer is to be called a BIG BOY. It is one thing he wants very much. Recognition at being a big boy, LIKE JUDSON. One of the most tangible ways of achieving Big Boy status is wearing Judson's old clothes. Yeah, you thought hand-me-down was a bad word. Wrong! He remembers it used to belong to J and is quite proud of the fact that he is now wearing Big Boy clothes. As a side note, I suspect this fall that sweatshirt will get down to the last Stricklin boy. Then he too can be a Big Boy.

31 for 21 Day 9

NOW, Seriously!!!!

These 2 are more like twins!
I swear they are more alike than a lot of twins I've met.
They are so funny together.

31 for 21 Day 8

Seriously????

When we first brought Ansley home,whenever I'd have Sawyer and Ansley out together
I would ALWAYS have someone ask
"Are they twins?"

31 for 21 Day 7

What did you do when you found out?

We were not like most folks who get 'surprised' with the news.
In fact, I suspect we disappointed many a hospital
social worker when we didn't flinch
at being told the news.

With so many Level II ultrasounds,
we saw all the markers that Sawyer
would most likely be born with Down Syndrome.
Having the karyotype confirmation
did not surprise us.
NOW
I will say
had we not been aware of the news,
the lack of delivery finesse would
have left us pretty empty and scared.
So I totally understand the fear many folks
have with being told their child has Down Syndrome.

BUT
we did not have the time
to mourn or be scared of Down Syndrome.
We were too busy being scared
of Pulmonary Arterial Hypertension.

By the time we got a grip on PAH,
we were so much in love with our little guy
all we could think about
is how do we keep this kid alive.

Many a doctor wrote Sawyer off as not having
more than a year to live.
Before that year was up,
Sawyer had had surgery to repair
his heart.
This surgery also 'cured'
his PAH.
The doctors learned a very important lesson.
(at least I hope they did)

The rest they say is HISTORY.
Sawyer continues to make history.
And we continue to be in awe that God entrusted us
with such a precious gift.

31 for 21 Day 6

A Few of Sawyer's Favorite Things (Activities)

Wrestling
(to this day if Judson is sitting, Sawyer is going to attack him)
Kitchen
(Even now, his teachers tell me that is one of his favorite activities at school)

Reading
(just this school year he became lost at recess. after much panic,
the teacher discovered him across the playground
on a bench
reading a book.)

He also loves music but this must be heard to 'enjoy'. Pictures don't do this LOVE justice.
Elvis, 3 Tenors, Josh Groban are some of his favorites. (as are Wiggles and Imagination Movers)

Movies are another great love of his. Mary Poppins, Apple Dumpling Gang, Polar Express are among his current favorites. When I say LOVE, let me explain. He knows every word by heart AND repeats them along with the characters. (Told you he had a good memory)

Playing outdoors (unless of course one of his favorite movies is on). Swinging, swimming, just chasing his siblings. It is all good.

Catching on, yet? Sounds like you and me, ay?

31 for 21 Day 5

Common Misconception

Sawyer is always happy! (aren't all people with Down Syndrome happy?)

This one is ALWAYS spoken by someone who knows NO ONE personally who has Down Syndrome. If they knew anyone with Down Syndrome, they'd realize Sawyer is just like you and me. Are you ALWAYS happy? In general, I'm a happy person by nature. That does NOT mean I'm always happy.

Sawyer in general, has a happy personality. (He's not on the same plane as Turner in the category though. T blows the top off HAPPY) He also gets sad and angry and silly and confused and all the other emotions that we all experience.

Let me tell you, when he gets angry WATCH OUT. He can throw a Stricklin fit with the best of them. He can also snuggle with the best of them...Get silly with the best of them....Laugh at slap stick with the best of them...sing with the 3 Tenors with the best of them (OK...maybe he's not really the best at singing BUT he gives it all he's got)

WHY?
Because he's just like you and me.

Wanna know something else?
Without looking at anyone else's blog,
I prepared this post about this misconception.
Upon looking at other 31-4-21 blogs,
I found many more who posted the same thing.
Why is this misconception still floating around?

31 for 21 Day 4

Why are you such a big proponent of Down Syndrome adoption?

I do *heart* Reece's Rainbow.
To see it from it's inception to where it is now,
is simply AMAZING.
Andrea and the people who work with her are awesome.

Did you know that in many Eastern European countries,
children are placed in orphanages at birth
if they are born with a disability?
(Down Syndrome, Cerebral Palsy,Fetal Alcohol Syndrome, etc)

Many are loved and many more are not.
Many (Most) will be transferred to
mental institutions around the age of 4 or 5.
Many (Most) do not make it in these institutions more than 1 year.
They die.

Did you know that in many other countries
children born with disabilities (including DS)
are feared as being possessed by the devil?
Families who decide to keep their children are at risk of being ostracized.
(or worse)

Before you get all uppity about this,
remember that in the US prior to 1950ish
we practiced similar behaviors.
So that is why I support adoption, especially adoption
of children with disabilities.

Let me be clear....
First and foremost,
I think that families should be empowered to keep their children
as opposed to being
'forced' to give them up
making them social orphans.

When this fails,
I totally support adoption.

Ultimately, I think it is our responsibility to take care of the 'least of these'.

And now for a trip down memory lane:

Interruption

We interrupt your regularly scheduled programming to show you how big someone is getting.

We'll rejoin regularly scheduled programing tomorrow. Thank you.

31 for 21 Day 3

Pictures.

Since I've been going through pictures, I thought I'd post several that make me HAPPY. You see, Sawyer makes me happy. Every time I see him, I smile. (Unless of course, he's having a Stricklin fit. Then I just turn to Randy and say, He's yours)

See the one of him in his baseball uniform?
Know why that makes me happy?
Look closely.
It was one of the first ones taken after we
removed the oxygen and feeding tubes.
You can tell that because of the redness on his cheeks.
That was caused by the tape to keep everything in its place.

No more feeding tubes, which he'd yank out and I'd have to put back in DAILY.
No more oxygen.
No more meds.

It makes me happy!

31 for 21 Day 2

Pet Peeve

Don't call my son, "Downs kid" or say "He's Downs, isn't he". Drives me BONKERS. Yes he has DOWN SYNDROME. You may say, Does he Have Down Syndrome or something like that. DON'T say 'He's downs'. What the heck does that mean anyway? I think it's grammatically incorrect.

Besides you are defining him by one aspect of what makes him unique. If you know much about him, it really is only a small part of what makes him HIM. Did you know he's stubborn? That's a Stricklin trait. Did you know he loves music? That's a Bledsoe trait. Did you know he's a comedian? Not sure who takes credit for that. Did you know he has a memory like an elephant? He gets that from me. :0) Crystal blue eyes, Stricklins. (Judson got the Bledsoe blue eyes) Cowlicks, both sides of the family. In reality, Down Syndrome makes up only a tiny part of who he is. Stubborn, funny, great memory, music....those things make up way more of who he is. Those are the things we see everyday. Those are the things that make him HIM.

SO do me a favor. Stop saying He's downs. Every time I hear it, I get a knot in my back and have to go to the chiropractor. It's getting expensive!

Judson on the left. Sawyer on the right.

31 for 21 Day 1

A basic lesson.

Down Syndrome was first described in 1866 by John Down, hence the name Down Syndrome. There is nothing "down" about it though. It was not until 1959 that the disorder was associated with the 21st chromosome, thus the name Trisomy 21.

Did you know that there is more than one type of Down Syndrome?

There is Trisomy 21 that occurs when all 21st chromosomes are triplicated. This happens in more than 95% of cases. (88% of the time from the egg and 9% of the time from the sperm)

There is Mosaic Down Syndrome which accounts for 1%-2% of children born with DS. This happens when only some of the 21st chromosomes are triplicated.

There is Robertsonian Translocation. This can be inherited and happens in 2%-3% of births. With this type of Down Syndrome, the extra chromosome attaches to another chromosome besides the 21st. (typically the 14th).

In a room full of 100 children with Down Syndrome, the children would all look similar and it would be hard to distinguish which type of Down Syndrome each child had. Just like a room full of 100 kids without Down Syndrome, each child would have his/her strengths and weaknesses. Each would carry similarities in features(personality, looks, talents, etc) to other family members.
Here is a picture of Sawyer as a newborn. Even then, he had features much like his Pop-Pop. As he has grown, he also shares many personality traits with his Pop. (some good, some not so good)