Merry Christmas!!! =0)

Please watch the videos at the bottom of the page (don't forget to turn off the music player at the bottom). =0) I haven't had much time to post recently, but I am working on a post about Isaiah's health - I have been waiting on labs to come back to (hopefully) give a little bit of info. as to all that has been going on here. Isaiah is doing okay - he hasn't had an ER visit, just lots of doctors visits since his last episode of anaphylaxis over 8 weeks ago. Anyway, the videos - - - MERRY CHRISTMAS!!!! =0)

(By the way, I have added one just because . . . he's just too cute! =0) Mommy's little Rock Star! The guitar was a Christmas present that he chose to open tonight - I always let him open 1 present on Christmas Eve, he chose this one)

(don't forget to mute/pause the music player at the bottom of the page) =0)

I love this time of year! It's warm, it's cozy; most people are super-friendly - it can bring the best out in some people . . . (sometimes the worst). =0} It's a time of year where there are tons of beautiful decorations and Christmas music makes its appearance. Stores are busy with holiday shoppers and sales galore. However, it’s not always peaches and cream for those on the Spectrum - the Autism Spectrum. For Isaiah, this time of year is amongst his favorites, too, but the crowds, loud noises, and tons of change seem to overload his brain and in the midst of all the business and happiness (and decorating), we find Isaiah having an untimely, all-out meltdown.

Family over for Thanksgiving dinner? Meltdown.

Thanksgiving decorations going up? Meltdown.

Thanksgiving decorations coming down and Christmas ones going up? Meltdown.

Let's not even talk about the Christmas decorations coming down . . .

He hates change. We try to make the transitions happy for him - he even helps with the decorations or preparations (sometimes). But he can't seem to escape the whole sensory overload sometimes. Usually, one or two small changes are fine. It's more or less when those changes are in preparation for visitors that it can be a problem (when you have to make room at the table or move some of the furniture so there will be room for the guests and the Christmas tree).

Then, there is the chaos of extra people in the house, who bring extra noise because of the many stories that are being shared - it's then we find a meltdown. He enjoys the people being here, it's just that just doesn't like the noise. This is why theme parks are generally a bust for us - Isaiah can't take the noise, the busy-ness, the crowds; too many things to see and hear. Shopping, as you may have guessed, is just as tough on him . . . add to the crowds a crying baby/toddler/child and Isaiah becomes a mess.

This year, the family actually saw the meltdown (which used to be avoided by me taking Isaiah aside for time to calm down . . . or a video where Isaiah could escape for an hour or so). This year, that didn't happen - there was too much to be done and mommy overlooked the aside time. Add into the whole overload the relentless fever that he has had for 5 weeks, the fact he's not feeling very well, the fact that he's not sleeping well again, and you have a recipe for the mother of all meltdowns (at some point, I will write a post on his health situation). Did I mention the withdrawal from steroids and change of medications somewhere in there??? Poor guy had his plate absolutely full and just lost it. We had the gaping mouths, bulging eyes, and non-understanding comments going - people who don’t understand what it means to have a child with Autism and Sensory Processing Disorder. At first, I wanted to be angry - I wanted to dish out the hurtful comments in response to what I was hearing . . . but I realized they just don't understand. What would my hurtful comments do but cause squabbling and more hurt feelings?

You don't understand until you have lived the experience. Even working with children with Autism, I never got it. Sure, I had a wee bit more of an understanding (and learned not to point fingers and say a "misbehaving" child was just poorly disciplined), but I never truthfully got it - until now . . . now that I have my own child with Autism.

Here is a poem a good friend (and advisor) shared on Facebook (thank you, Kathy) that seems to explain it all from our point of view (add "he" for Isaiah where the poem has "she"): =0)

An Autism Christmas Poem

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
Asleep early for Christmas?
...an unlikely path

The children were finally
All nestled in bed
When visions of Christmas
Ran through my OWN head

Did I get the right gift?
The right color and style?
Would there be a blank stare
Or even, maybe, a smile?

Friends & family come
But they don't understand
The pleasure she gets
Just from bending her hands. (or jumping) =0)

"Just make her stop it," some say
"Just tell her "no",
“You must learn to be tough.."
On and on they go...

We smile and nod
Because we know deep inside
The debate is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles, triumphs
achievements and regressions.

But what some don't know
And what some don't see
Is the joy that we feel
Over simplicity.

She said "hello"!
She ate something green!
She looked me in my eyes
She did not cause a scene!

She peed on the potty!
Who cares if she's ten;
She stopped saying the same thing
Again and again!"

Some others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With envy, with wonder,
Or even distaste,

What we want them to know
What's important to see
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try so hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at us all
With respect, even shock.

You will realize
What it is we go through
And the next time you see us
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years I learned to
When the tables were turned.

~Christine Muczyk

Happy Thanksgiving!

Soft Clothing Giveaway!!

I love Christmas! It's my most favorite holiday. I love just about everything about it - the sights, the smells, the sentiment, the warm cozy feeling, the smooth voice of Bing Crosby playing in the background, the thought that it's the season we celebrate God's gift of Jesus and life to the world . . . it's just a wonderful season!

Considering the season of giving is now upon us, Soft Clothing and Hartley's Life with 3 Boys Blog are having a Holiday Giveaway!! I have mentioned Soft Clothing on my blog before, but just in case you are wondering, Soft Clothing is a company dedicated to making soft clothing - comfortable clothing designed with children with SPD in mind (Sensory Processing Disorder).


As for Hartley - I guess you could say that she found me. =0) I really enjoy reading her blog about life with a child with SPD and Autism.


I can tell you, Soft Clothing really lives up to its name. No matter how many times we wash Isaiah's pants and shirts, they are still as soft as the day they arrived - and we don't even use fabric softener!

There will be 2 prizes given away (one for a boy and one for a girl) and will include prizes that focus on fine motor skills, sensory integration, creativity, and more. Here is what will be included (taken from Soft Clothing's site):

Quilted Train Stocking from Pottery Barn Kids (boys prize)

Quilted Angel Stocking from Pottery Barn Kids (girls prize)

This is Gabriel Making Sense of School, by Hartley Steiner

SPD Awareness Calendar (for sale at http://www.sensoryplanet.com/)

Glitter bouncy ball from Pottery Barn Kids

Alex Finger Crayons

Tangle Textured Jr

AKU Sensory Ring

Melissa and Doug Jumbo Paint Brushes (set of 4)

Melissa and Doug Deluxe Fuzzy Make your Own Monster Puppet

Wonderland Eco Friendly Rainbow Sound Blocks

Mood Therapy Putty

Soft Seamless Sock 2-pack

One complete Soft dressy look for girls OR

One complete Soft dressy look for boys

Isaiah has some sensory issues with texture, especially when it comes to clothing. Since Isaiah's skin is so sensitive, I cannot use fabric softener in his clothing, which can make the clothes scratchy to him, which (of course) drives him nuts. Have you ever tried to wear blue jeans without fabric softener??? Enough said? =0) That's why I love the denim pants from Soft Clothes - there is no need for fabric softener because they are super soft. Isaiah has yet to complain about them being icky.


So, how do you enter? Click on any of the embedded links above or click HERE and enter away! =0)

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As far as Isaiah's health . . . I have more to post on our recent All Children's Hospital appointment (it was an unplanned, emergency visit) . . . but it will have to wait until my brain has a little bit more time to process all the info.


So, for now, here are a couple of pictures I want to share with you:

Morning snuggles with a napping Ye-Ye =0)

. . . and just because she rarely shows up on the blog

(thank you, Nai-Nai, for all your hard work and support!!!)

Isaiah is my Hero

God was really watching over Isaiah last night. I had finished cleaning up after our little Fall and "first tooth lost" party last night and was sitting outside Isaiah's room getting ready to put his money under the pillow, when I heard a crackling, snorting kind of sound coming from my child. Isaiah does snore quite on a regular basis (and quite loudly, I might add), but this really sounded different. At first, I thought, "he's just snoring weirdly tonight - no biggie." But, I just had that feeling and then heard Isaiah moving around a bit. When I turned on the light, I saw Isaiah covered with a rash, red, swollen, and the areas that weren't red were blue (the tip of his nose, his very swollen lips, a portion of his forehead, his swollen fingers and hands, and his swollen feet). I grabbed him and administered the Epi. He looked awful! The noise I was hearing was him trying to breathe! He was so swollen. Even when I gave the Epi, Isaiah didn't cry and didn't even flinch (he was still somehow conscious).

(The pictures were taken after the Epi while waiting for the ambulance - his allergists want to see pictures of his reactions.)

By the time the ambulance arrived, Isaiah was still panting, but breathing . . . and his feet and ankles were so blue that they looked dirty. This time, the paid firemen didn't wait for the volunteers to arrive (we have two fire departments close to us - the paid firemen are closer, but usually don't transport because of zoning). Things calmed down in the ambulance and his BP and sats were all relatively normal by the time we got to the hospital (he still had tachycardia and his BP was just slightly below normal).

Thankfully, today, he is fine - a little swollen, but fine (he's a tad high on prednisone). =0} I can't imagine what would have happened if I hadn't been sitting right outside the door - I wouldn't have heard him. God was watching over my little man - I am so thankful for that. I am so glad that I didn't stay out in the living room and write his note (I wrote a note to go along with his "tooth fairy" money), I am so glad that my purse was right outside the room . . . I'm so thankful that I was sitting on the floor in front of the door and I'm glad I wasn't asleep - I don't think I would have heard him. God was really watching out for him - He is so good!

Isaiah will be on prednisone for the next few days (a pretty hefty dose, too). =0} Hopefully it won't mess with him too much - he gets a lot of energy and can be quite moody on it. =0) If my post is redundant or really doesn't make sense . . . sorry, I need to go to bed. =0) Goodnight!

We have an announcement!!!

ISAIAH LOST HIS FIRST TOOTH! =0)

(can't tell I'm excited, right?)

=0)

Here is the new toothy (minus one) grin:

And, apparently, I'm super mom because Isaiah says that when he goes to sleep I'm going to whistle and turn into the tooth fairy. I had no idea! =0) He has quite an imagination.

This tooth was Isaiah's very first baby tooth, so it's fitting for this tooth to be the first one he lost. While this photo isn't of the moment I discovered his first tooth, this photo at least shows his first tooth. =0) The funny thing is that I even remember the outfit he was wearing when I discovered his first tooth - little blue fleece with "68" embroidered in silver on it. =0) Ahhh, seems like yesterday.

I'm so proud of my little man! On top of losing his first tooth, Isaiah is doing so well in Awanas this year. Last week, he memorized the names of all the books in the New Testament - 27 books! Isaiah has quite a memory and he is absolutely determined to memorize whole sections of his book (approximately 4 verses per section). He's an amazing little man. And, on top of that, Isaiah is reading words that he shouldn't even be able to read (we have to hide the verses book just to make sure he's not cheating). =0)

Well, I think I should probably end the post here . . . you know, because I have to turn into the tooth fairy and all! ;0)

Upcoming appointments: this Wednesday, IEP meeting (with a Family Liaison who already has the school on their toes . . . and we haven't even met with them yet!) =0) Pray that all goes smoothly and that we can get this IEP in place before Isaiah has any problems with school work.

Health update: Isaiah is still having problems with petichiae and bruising . . . and the usual allergy & masto symptoms (including the seemingly endless battle with eczema) - still no anaphylaxis!!! We're trying the pill form of one of his meds (Xyzal), so please pray that it works and that he will continue to take it. He hates pills and would much rather have the icky-tasting liquids (it's a sensory thing, I guess). Pray also that the pill works just as well as the liquid . . . any form of messing with meds makes me nervous.

My baby put on his shoes!!!

ALL BY HIMSELF! =0) He may not have tied them, but he did put them on for the very first time! I'm so excited! So excited that I gave him a huge hug at dance (where he put his shoes on by himself for the first time) and told him just how very proud of him I am.

And if that just isn't enough exciting news for you, well . . . Isaiah has his very first loose tooth!!!! =0) I'm so excited (and queasy)! He wasn't too thrilled about it at first (there were tears shed), but then I explained that once he loses this tooth, he will get a grown-up tooth in its place . . . and there were more tears shed. =0} After telling him it was okay to lose his tooth, and making a big happy to-do about it, he cheered up and squealed, "and Ar-fur said a toof fairy brings money!" =0) (by the way, Arthur is a PBS Kid's TV show)

His baby tooth (the very first one that showed up) is really crooked . . . and if you wiggle it, you feel lovely scraping and grinding (that's where the queasiness comes in . . . at least for me). =0}

It seems almost like yesterday I was sending pictures of the very first tooth over the Internet to just about anyone in my e-mail address book. Now, I am writing about that same tooth being loose and waiting for it to fall out so I can send (yet again) pictures to anyone who will read about Isaiah's very first missing tooth.

*sigh* =0)

Isaiah has also learned two new songs that he loves singing at the top of his lungs . . . in addition to Toby Mac's "Just give me that funky Jesus music" . . . (you might want to turn up your speakers and pause the music player at the bottom of my page) =0)

("I'm walking on shun-shine! Whoa-oh-oh!") I love it!

("Shake and move dance, shake and move dance, yeah-yeah!" . . . Shake Your Groove Thing . . . he got it from my birthday card.) =0)

He's such a ham! =0)

I am just so proud to be Isaiah's mommy! =0)