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)

31 for 21 Starts Tomorrow

Grab This Button

Wordless Wednesday (It is Wednesday, right?)

Nothing More to Say Really

Just click on the link,
http://www.only1mom.com/2010/09/orphanages.html

The Big "C" (EDITED)

I hate CANCER. It stinks. It just plain is not fair. Please check out this blog post from Hannah's mom about sweet little Lois: http://hannigans.blogspot.com/2010/09/lois-news.html


Lois needs our prayers, good karma, and all the other good stuff you can muster. This is a tough fight. Here is her momma's blog: http://thedailylois.blogspot.com/2010/09/devastation.html

Get Ready

Coming in October. 31 for 21 challenge.
October is Down Syndrome Awareness month.
I'm going to try to post something about Down Syndrome each day in October.

One Last Hoorah!

By the Way, this is how a mermaid sits!

With a big shout out to Kimmy, THANK YOU!

Loving School

Last night as I was getting Sawyer ready for bed, out of the blue he said "Mom, I love school". I said, "You love school?". He said, "Yeah, kindergarten". He had the biggest smile on his face. Makes all the drama and tears of the 'school fight' worth it.

What would you draw?

Your house and your neighbor's house with the sun?
Circuit diagrams?

A Race Track?

It's all good.
Except, Sawyer was down with allergies and couldn't join in.

Enkutatas, Ethiopian New Year

Today in Ethiopia (and many other parts of the world), they are celebrating New Years. (Enkutatas) So what better way to celebrate the New Year than to celebrate Turner. He is an awesome kid. He epitomizes what is good and right with this world. SO Happy New Year to all my Ethiopian friends and to all my Jewish friends.

No, I cannot get rid of the underlines.

Turner LOVES being from Ethiopia. Loves telling people he was born there. He is very proud of that fact. (for that I am very thankful) He loves talking to the boys at Kolfe because "They are from Opiopia like me". So, when Rosey Posey (see link on side of my blog) made her grandson an Ethiopian hat, I knew I had to have one for Turner. He LOVES this hat. I have to take it away and hide it or he'd wear it everyday, all day.

Just for my Sister (she knows why!)

And Yet Another Museum

We saw TWO museums when we visited Oak Ridge. The second was a children's museum. There was history about the Appalachian Mountain community including pioneers and animals and WWII related things. There were trains, dolls, puppets, a play house, a water area and much more. The kids loved it!

If you are ever in the area, I would definitely recommend both museums. There is also a train ride which sounded interesting but we just ran out of time. Cost was not bad. The science museum is free for 5 and under. The other museum was a bit more pricey but still overall not bad for several hours of entertainment for a family of 6. You could easily make a full day at either museum. The science museum did not allow food/drink. However, there were picnic tables outside. I am not sure you could leave and come back though. The children's museum sold snack foods and had an area set up inside where you could eat. Outside, it also had a picnic pavilion and a children's playground. Plenty to keep the kids busy.

Be sure to click on the collages to see the pictures.

A Day at the Museum

Oak Ridge, TN

1940's
Manhattan Project
Atomic Bombs
That's about all I knew until we visited.
It is set in a very beautiful area.
The mountains are absolutely breath taking.
(I will say we were definitely a curiosity to folks around there )
AND
There's a Science and Energy Museum.
A must see if you have a child like Judson
Very hands on type of museum
Very kid friendly
A lot of history about the Y-12 National Security and Nuclear Energy
Lots of information about all types of energy
Something for everyone.

Just for Harry

Friday night eating with family

Harry, this is where Ansley drew the picture for YOU!

No. 8

Can you believe it? Our little guy is 8 years old!!!

How can that be possible?
I cannot even wrap my feeble brain around 8.

We celebrated all weekend.
Thus, we are TIRED.
So tonight, I'll just post birthday cupcakes.

You can tell how tired I was.
Store bought cupcakes.
No wrapping paper for gifts.