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Wednesday, October 14, 2009

Days 10-14 of celebration!

Where does all my time go?? :)
I'm behind with posts and this one will be lacking words, but full of photos!
The Boise Buddy Walk last Saturday was spectacular; 1200 walkers! The "Loving Layton" team had 30 walkers and Layton had a blast! A couple of his friends that were in his class last year came to join us. There is a picture of the 3 of them below. The videos at the end are of the end of the festivities at Julia Davis Park. Layton, Kassidy and the other blonde boy, Alex really enjoyed busting some moves on stage! And you've got to see Layton take a bow at the end-too cute!
Thank you, to all of you reading this, who were able to come and make Layton's day extra special! And to all the readers out there near and far, thank you for taking the time to read about my awesome kid!
Until next time......Enjoy!

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Friday, October 9, 2009

Day 9 of 31 days of celebration!

I had intentions to write about the decision to have more children after having Layton. However, I found myself hard pressed for time today. My in-laws will be arriving this evening to join us for the Buddy Walk. I don't believe I'm alone in the "panic of in-law arrival." LOL! There are just a lot of little things that need to be done before they get here; namely wash the bedding in the spare room. :)

Anyway, I've decided to post a poem that a dear friend of mine shared with me. I have a handful of friends who have children with Autism. I also have a couple of friends whose kiddos with Down syndrome have a dual diagnosis of Autism and Down syndrome. When the two are not dually diagnosed, they are two entirely different journeys, but I feel that parents of children with any special need experience a lot of the same trials and joys.

"I Promise You This"
By Debbie Hastie

I Promise You This :
With every step you take
I will hold your hand.
And together we will make
Your life a little brighter.
your smile a little bigger.
"cause there is nothing we can't do
as long as we are together.

I Promise You This:
You'll never be alone
regardless of your age,
even if you are full grown.
I will cherish every moment.
I will cherish every day.
There is nothing we can't handle.
We will find the way.

I Promise You This:
I will be your words
when you can't speak.
I will help with your work
when you feel too weak.
When difficult times comes along
and you can't cope.
I don't want you to worry
I am always filled with hope.

I Promise You This:
I will run your bath.
I will change your clothes.
I will make your meals,
for as long as God only knows,
I will be your shadow,
we will never part.
I wish you truly knew that you
have the biggest part of my heart.

I Promise You This:
We will travel this road together.
Never knowing where it will turn.
I will hold your hand and walk with you.
and TOGETHER we will learn.

I Promise You This:
I have seen your smiles.
I have heard your cries.
Knowing deep inside,
we may never know why.
But God chose to bless us,
and calls you my son,
And with that the battle against autism
is already half won .


This really spoke to my heart today and I hope you get something from it as well!

Stick with me the next couple days as we've got lots of "extras" scheduled for our weekend, but I'm determined to keep up with this-it's very therapeutic for me ;)

Thursday, October 8, 2009

Day 8 of 31 days of celebration!

The big change was this:
This screaming little beauty, Kassidy joined our family.
I love this picture because Layton's face seems to say, "Oh, crap!"



She didn't always cry...but she cried
a
lot!





But she cried a lot...
and it wasn't always because her head was getting squeezed by her big brother...

She was just a little ornery :)



A question I have been asked more times than I've kept track of is this, "Weren't you scared to have more kids?"
And that, my friends, is what my head and heart will tackle tomorrow!

Wednesday, October 7, 2009

ooops!

So...
Blogger is a tad messed up and my posts that I have set to auto post are posting on the wrong days.
And I don't know how and don't have the time to figure out how to do the switcheroo, so you'll have to play along.
All the days thus far are here, you just might have to scroll down to see them in order.
Sorry for the confusion!

Tuesday, October 6, 2009

Day 6 of 31 days...

When we first learned of Layton's diagnosis, my husband and I were immediately concerned about issues that would effect Layton in the future; WAY in the future. We were very naive to the abilities that Layton possessed. We obsessed over the things that he may never be able to do. Would he ever be able to drive? Hold down a job ...and who would hire him? Would he ever get married? I can tell you that NOW we know the answers, for the most part, to our questions: Yes, yes and YES! Layton wants to drive so badly. He knows how to start my car and put it into gear (which is real frightening, let me tell you!). And you ought to see the kid on a 4-wheeler (ATV)-he can parallel park better than me! If there is a parked car, farm truck, tractor, anything with wheels and a motor within Layton's view, it is esscential that the keys are in your pocket! Layton will be perfectly capable of having a job. Doing what? I don't know yet, but he will work; I know that. This is kind of a funny story: There is a man who has Down syndrome that works at one of our local Albertsons. His name is Bobby and I just love him. Before Layton started school, our schedule was such that we drove past, and often shopped, at this particular store about once a week. Bobby was always there and the first time we met him he looked at Layton and said, "He's like me!" He warmed up to Layton immediately. So for a long time, Bobby always took extra good care of Layton when we were checking out. Bobby always asked me, "Can he have candy?" To which I would reply, "Yes, but just one." (it was usually only 9 or 10 in the morning!) So he would give Layton one Smartie. When he thought I wasn't looking, he would stuff about 10 more into Layton's little hand. They would smile at each other and I'd pretend I didn't see the transaction between them and we'd leave. So one morning we were there, standing in the checkout line and I spotted Bobby a few aisles over, diligently cleaning the glass doors of the one of the soda coolers. He seemed to be in a grumpy mood; really putting some extra elbow grease into his cleaning. I decided we would just let him be at the exact moment Layton noticed Bobby and took off to collect his Smarties. Bobby had just finished cleaning the cooler when Layton walked up and put his sticky hands all over the glass. Bobby simply looked at Layton and said, "No, no." Layton just looked at him. Then Bobby sprayed the finger prints, got a new paper towel off the roll and wiped them away. Yep, you guessed it.... Layton smeared the glass again. And giggled.... I was trying to hurry and put my groceries on the counter for the cashier, all the while watching over my shoulder, shouting, "Layton, come here!" Bobby quickly wiped the newest smear marks away. I rushed over, reached out to grab Layton's arm and pull him away from Bobby's hard work. Layton leaned forward and LICKED THE GLASS! I gasped... I think Bobby cursed.... and Layton laughed. Bobby yanked the glass cleaner out, wiped off the slobber and stood toe to toe with Layton. He very calmy said to Layton, "I don't like you today." And turned and stomped off. Well, I didn't blame Bobby at all. I really didn't like Layton right at that moment either! But the next week, Bobby had forgiven him. It was as if nothing ever happened. And Layton left there with a handful of Smarties. :) I love Bobby.... I'm pretty sure Layton will get married someday....he's quite the ladies' man! Maybe he won't want to get married, I don't know. But if he does want to, we won't try to stop him!
Just a cute video of me, the dorky mom saying, "You are soooo messy..." to Layton over and over because it made him giggle.
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And I'm sharing this one of me and my lil' butter ball 'cause I like it:

Monday, October 5, 2009

Day 7 of 31 days of celebration!

Yesterday I talked about some of the things my husband and I struggled with in regards to Layton's future.
While fretting over the future, we began to realize all the little (okay, maybe not so "little") things we'd have to face head on while Layton was a baby and a toddler.
We were aware that people with Down syndrome commonly have "hypotonia" (low muscle tone) but we weren't aware of just how many things having low muscle tone effected.
Rolling over....
Holding a bottle...
Sitting up without assistance...
Crawling...
Walking....
and talking....because the tongue is used to articulate words and the tongue is a muscle.
So we quickly transitioned our mind set over to the "here and now" and realized that if we wanted Layton to do all the things mentioned previously, we had to intervene....NOW!
And so it began...at about 3 months of age, Layton started weekly Occupational therapy visits, Speech therapy visits and had Physical therapy visits every other week.
And while I am so grateful for all of these things, and really feel I owe my life to a handful of therapists that helped mold Layton into the fire cracker he is today, there were days when I dreaded
one
more
therapy
appointment.
But I maintained an attitude that I would just "buck up" and press on. I felt like it was the least I could do for my child, who relied completely on me and was counting on me to do best by him.
So that's what Layton and I did for a couple of years; just the 2 of us, while my husband was working hard, providing that ever so important insurance that paid for most of the said therapies.
And while he doesn't have nearly as many therapy appointments now, he still has weekly sessions of Speech and OT, after school. Which is okay, because I'm far from impressed with the Speech therapy program that is offered in the school...I mean, super, duper far from impressed. OT is better...but I'll screech to a sudden stop right here ####
Because that in and of itself deserves it's own, seperate blog.

Okay. (deep breath in....and out)
Heh.

Here is one of my all time favorite therapy "in action" shots:
This is called a "flexion box". Layton had great "extension" (he could do a killer super man pose while on his tummy for what seemed like hours)but his flexion was not so great. Meaning, he lacked the muscles and control needed to flex in and do something as simple as roll over. So an OT came up with this idea and brought it to our house to help train Layton's little body to flex. Brilliant, huh? Yes, I agree it looks ridiculous,seeing your baby all scrunched up in an office paper box with fancy, schmancy contact paper stuck to it's sides....but it worked and he really enjoyed being stuffed into this box ;)


Randy and I thought it would be the best thing in the world for our boy to have a dog! What a therapeutic thing that would be, right?
We got a puppy so that they could grow up together....we still have Zoey and every day that I go out to scoop poop so I don't have to wash it from someone's shoes......I wonder who's bright idea the dog was?
It most certainly wasn't mine; couldn't have been.
But Zoey and Layton are great pals...so the pooper scooper, I shall remain.


It was the same OT who brought us the flexion box that suggested we have Layton seen by a pediatric opthamologist.
Layton with glasses at 14 months old:



And he started getting into everything!



Literally into....
everything.


Here we are at Crater Lake, OR the summer of 2003.
We were about to have some big changes in our lives!
The kind of change that takes your little world, turns it upside down and SHAKES you 'til it hurts.
I'm probably the only one who notices how thin my face is and well, how awful I look, but the guys look pretty cute!
Maybe this gives you an idea what the next post will be about?



Thanks again to all of you, for taking this journey with me!!

Day 5 of 31 days of celebration!

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


And they are lovely things, indeed!
Yesterday I mentioned how scrawny Layton was in the picture I posted...here he is a few months later:
Whoah!! What happened?? :)
These are the chubby-cheeked smiles that I force myself to see when I have been called "cow-poop mommy" for the 20th time in a day.
Could he be any cuter?