Christmas Party

This past Saturday GG came over to watch the kids so Mike and I could enjoy a much needed night out with my Dad. We Went to Ditondos for Cheryl's work Christmas party and had a really good time. Had some nice chatting (kid free mind you!) With Dad, Cheryl, Uncle Shawn & Aunt Leah. Here are a couple of the photos from the night!

Mike with an actual Smile!

Shawn & I

Leah & I - I HATE close up pics

Dad & I, a candid shot

Mike & I

Our attempt to get Caden's picture with Santa

"Failed"

But that's Okay, I went in not expecting much to begin with, he got close, that is good enough for him!

Colin's Evaluation Update

So this morning was Col's OT eval. They sure picked a good day for it, since he woke up at 3:45am this morning and NEVER went back to sleep, except during the car ride to Stacy's house to drop off Caden. That was at 7:45, since the eval wasn't until 9am, I was thinking yay, I can bring him in, then I can lay down and get a 45 minute snooze in, ha! Yea right Kym. Not happening. He woke up as soon as we got in the house and back to vacuuming he went. *sigh* SO needless to say, they got to see the "real" Colin. The real scary crazy Colin! The Colin WE know~which is the best possible outcome of an eval.

Colin does definitely qualify for Occupational Therapy Services. 2 times per week at that, in addition to a Special Education teacher. I must admit, I am glad to hear this, it verifies that I am NOT crazy for thinking that he was having problems. For months I've gone back and forth wondering if he really had some issues going on or if he was coping his older brother OR if he was just a typical 2 year old. This made me feel less guilty all around *whew* I was pretty nervous that I was reading way to much into this, but they at least verified the things that we see everyday. He had a tantrum. He ran around like crazy. He couldn't hold his attention for more then 1 or 2 minutes. He kicked, he threw things, he bit, he asked to vacuum and when we wouldn't let him, he found his popper and pretended to vacuum. They really did get to see for an hour what our typical day is like. The only thing I wish they could have seen was his reaction to change and transition, but they take our word for it. It's hard to transition when your not really changing much at that time. She did notice though how he pulls at his clothing, like if his sleeve is up, it needs to be down in the proper place, same thing with pants, socks etc. Needless to say, I am glad he qualifies. She was surprised by how much his not being able to process things is messing with his sense of self in everyday life and all of his environments. . I was surprised to learn how much it is affecting his fine motor skills and typical learning mind development! I never even thought of it in that way, so to have it explained to me, was pretty surprising. Since he is going to be 3 not to far off, we'll have to go through this all over again with the school district to re-qualify and the OT we have today suggested again that I ask for a Physical therapist come in to double check his legs and feet again as well, especially because of the "W" sitting his continues to do.

She also said that she thinks Colin would really benefit from a swing, since it seems like movement calms him so much. I'll have to look into that one and price things out. She has a feeling that the first many sessions will be a trial and error learning piece with him, trying to decide what works and what won't. He is a tricky child. We are going to do one day of therapy at our house and the other at Stacy's house, this way he is getting it in his typical environment and Stacy can have a hour break on those days to spend time with Christoper. I am looking forward to whats to come in his future and hope that someday soon we'll be sleeping through the night! Oh~ she was super excited too, that we are already using a weighted blanket too, since she was going to suggest that for help at night! Thank you again Donna for that!

Welcome To Holland

By: Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. 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.

Did you know that you can't get the swine flu shot if your sick?? I had read that you couldn't get only if you had a fever of over 101, since that is what is actually considered a fever. WELL, I just got a call from Courtney's nurse that Courtney has a fever of 99.6 so #1 they can't give her the shot & #2 - We have to pick her up?!! Since when is 99.6 considered a fever?? My temp is usually 99.2 regularly, so what the heck??? *sigh* Thankfully my mom is now on the way to our house so I could get her to the hospital, so she is stopping to grab Court on the way and bring her home for me. It's always something isn't it???? :-)

X~Rays

Yesterday we had Colin's X-ray appointment for his adenoids - that was interesting to say the least. Not easy. He fought and fought. In the end, I left the room and they brought in another nurse to hold him down and get the picture done. I thought for sure with him not feeling well, that he wouldn't put up a fight. Not! So the doctor then viewed the films and met with us, and let us know that his adenoids were in fact large. Not enormous, but still large. So it's between our ENT and us as to what route we are going to take. I'll have to wait for the call from Dr. Mandych next week, but I am 95% sure he'll suggest surgery..... and I'll take him up on that offer. Not that I want to put my child back under anesthesia for a 2nd time, but I know his history and I think this is the best choice. So hopefully by this time next week we'll know something!

In other news, Colin went to bed last night with a pretty high fever. He had it since the night before, and we can't get meds in him, so we just work it out naturally. The fever must really be taking it's toll on him, because he slept all night long last night!! Yay!! I hate that it took him being sick in order to get that, but I'll take what I can get. He went in at 8 last night and I had to wake him up at 7 this morning to leave. He was still feeling pretty crappy when I woke him up too. Hopefully he'll rest up at Stacy's today and feel better this evening. I really hope so, since we wanted to take the boys to see Santa tomorrow.....

And in More news! :-) Today is my mom's 2nd shoulder surgery in 3 months. We are going in at 11:30 this morning to manipulate (break) her arm/shoulder in hopes of getting some normal range of motion for her. Hopefully this will work for her, she's been suffering for along time. Keep her in your thoughts!

Tomorrow GG is coming over to watch the kids for us so Mike and I can get a much deserved night out for dinner and drinks at Cheryl's work Christmas party - Really looking forward to this time! Thanks GG for making the drive to help us out!

Random Pictures

I took these pictures on our way to Strong on Tuesday, and while we were at the hospital waiting as well. I wanted to post them with that post, but obviously that didn't happen! What else is new - so here they are!

In the Car on the 90 - on the way to Rochester ~ Notice Caden is wearing his weights!

Playing while waiting our turn.

I just love to capture these kind of pictures- where they look so calm and inoccent and have no idea what I am doing behind them. I should play with this and make it black and white, I think it would look great.... hm.... time to play!

The Fun we have at work

This is my boss ~ Today was our office Christmas party, we chipped in for lunch and did a secret Santa gift exchange. Terri liked the wrapping better then the gift! :-) We got her hair up in little pig tails and she did the rest herself. Gotta lighten things up sometimes ya know?!

Poor Colin man has been sick for the last couple days. Since he won't take any meds, we just have to wait the fevers out. Stacy took this, Bella must have known he wasn't feeling well. Poor Colin. Notice his hand up by his face? That is how we know when his anxiety level is really high, his hand goes right up to his face and he scratches. Poor baby, I hate when kids are sick, you feel so badly for them.

The first Couple Appointment Updates

*Whew* What a week it's turning out to be with back to back doctor appointment and ugly copay. ick! Not to mention the gas it takes to drive back and forth to Rochester. Man oh Man! They are all worth it though. I am hoping we don't end up in Rochester for Colin some day....time will tell.

So Caden's appt yesterday went well. She was happy to see the progression that Caden has made with his speech over the past 8 months. So that is Great news! She is pretty positive about the Apraxia diagnosis, however we can't be absolutely positive until he older to do an accurate testing on him. He does have an above average IQ, which was pretty neat to hear. That does make sense to us as well too though, since he's always been able to figure any little thing out and dissect things many of us couldn't even think of. Our biggest concern for this appointment was discussing what the upcoming school year will hold for Caden. This year, at his center based program he is in an integrated class. Within that class are 6 special needs children and 7 typical children. HOWEVER ~ The head start typical children, have not began yet. Weather there have been funding issues with the program, or enrollment issues in our general area, we do not know, but it does mean that caden is still really in a 6:1:1 class. In order to try to integrate the kids with typical children, they do library story hour 1x time per week. My concern all along, since Last June, would be how Caden would interact with that number of students, unfortunately we haven't had the chance to find out ;-( We did bring this up yesterday, and his doctor too agrees that he would not be ready for a typical class setting come September. She is going to write that in her report for us as well. Her recommendation would be to send him to our district school in a 6:1:1 kindergarten class if something like that is offered since all of his cognitive skills are clearly right on track, some above level. If something of that degree is not offered, then we will have to see if our current center offers some sort of program to keep him in for another year, then have him possibly start typical kindergarten in 2011/2012. So that is what we are up against with schooling for him. Currently Caden is functioning at around the 24-30 month age level when it comes to behavior/language, receptive and expressive. She doesn't think that he will be a child that is going to require Special Ed for his entire school career, which was pretty positive news, however he will require Speech & OT for many many years she said, which was expected anyway. We go back in Sept/Oct of next year, right at the beginning of the school year to see what adjustments needs to be made. She did say we could call sooner if needed as well, if we are having a hard time fighting/advocating what we want for him as far as school goes. She is so wonderful, we really like her alot. Congrats to Dr. Jessica as well, since her 2nd daughter is due next month!

Moving on to Colin's ENT visit this morning. What a long morning! I ended up almost 3 hours late for work!

Colin's tubes are finally completely 100% out of his ears! They had been hanging in there for months - we didn't know if we would have surgically remove them or what, so that was very good news. His hearing test came back good, as did the pressure test. The doctor was concerned that there was some fluid in his right ear, but the pressure test didn't show anything. He is very concerned about his adenoids though. Even more so since Colin's been snoring a bit more then normal lately (when is actually sleeps that is!) He knows his history and thinks the best route for him would surgery. before that though, we are going to do some X-rays, just to double check that his adenoids are in fact enlarged. If they are, he'll schedule the surgery. If not, he is thinking about sending him to an allergist, and still keep tracking his ear infections (or hopefully lack of) So yet another copay ~ Tomorrow afternoon at 4:30 Colin's going to have his x-rays done. Hopefully by this time next week, the doc will call us with the results and let us know if we'll be scheduling surgery or not. If so, I am going hoping to do it after the 1st of the year, only because I know it's going to be quite pricey and i'd rather it go towards our new deductible, rather than the old one...... hmm..... Time will tell!

So tomorrow is X-Rays. Friday is mom's surgery. Saturday is our Christmas dinner with Dad and Cheryl. Sunday is Our Christmas Dinner/gift exchange with Stacy/Dave and Family, Monday is Colin's eval. I can breathe Tuesday & Wednesday before the madness begins?? Did I mention during all of that I still need to make some goodies - peppermint bark, toffee bars, thin mint cookies, pretzel sticks & Candy bars for teacher gifts?? Oh yea.... fun, fun! :-)

Quick Update

I just wanted to give a quick update, since we have alot going on over the next few days before the Christmas holiday comes.

Tomorrow we have our 6 month check up with Caden's developmental pediatrician in Rochester, NY. So, I'll be off for the day. Mike is going to be working until 11 (hopefully no later!) we'll pick up Caden from school by 12:30, and hit the road for the drive to the hospital. Stacy and Dave are going to keep Colin until we get back home after the appt and then to parent group we'll head.

Wednesday is Colin's ENT appt. His ENT wanted to do a check on him before the cold weather started to track his ear infections. Fingers are crossed that we won't have any this year, but who can say. We lucked out last winter, with those tubes working for us. His tubes are no longer functioning, however they are still hanging out in the canal. I guess his ears are too small for them to fall out ~ huh interesting. So we'll see what he looks like in there on Wednesday and go from there. If we do end up with the infection battle this year, we'll treat the first one with with antibiotics, then the second one, He'll go back in for surgery and have his adenoids removed. Since we know his history, his doc. really doesn't want him to suffer as in the past. I love our ENT, he is such a nice understanding guy!

THEN next Monday the 21s, Is Colin's OT and special ED eval with Early Intervention to see if he qualities for any therapies (OT??!!). If the special Ed teacher doesn't find anything then they are considering a psychological evaluation on him....huh interesting yet again. These kids will be the death of me yet! So I am really looking forward to this (a little bit of sarcasm there, I should say I am looking forward to the outcome, not so much the actual evaluation!) I am hoping and praying we can figure out what in the world is going on with this little guy! I just keep thinking to myself, how much anxiety and stress sucks at an adult age ~ but imagine being 2 and having SO much anxiety that it interferes with life THIS much?? Poor kid! *sigh* Keeping my fingers crossed for this!

This Friday the 18th, is my mom's 2nd surgery on her shoulder. She will put back under general anesthesia and they will manipulate her arm/shoulder in order to gain back the range of motion that she has lost over the past months. She'll have to undergo intense therapy afterwards, like 5 days per week, but I think this is the best decision for her. She has still been in so much pain after her surgery, and therapy sure isn't helping since either, so we're hoping this gives her the relief she deserves.

This coming weekend my Dad and Cheryl invited Mike and I to Cheryl's work Christmas party. A nice dinner and night without kids?? YES! We'll be there! We are looking forward to some nice food, drinks and quiet, if only for 4 hours on a Saturday night, but I think every parent deserves that!

Sunday we're going to have Stacy, Dave and the kids over so the kids can all exchange their Christmas gifts. I love Christmas though kids eyes. I am going to make dinner, so it should be a decent night, I hope! .

Ok, So It think that is all that is upcoming over the next 6 days (is that enough??!!) Then we have Christmas and New Years! *whew* never ending is it??

So I'll be sure to update after each appt, or as I am able.

Autism Night Before Christmas

I copied this from a dear friend of mine's blog. It was written by a friend of her's who is a huge autism activist. This is wonderful and right to the point. Too many times in life friends, family and others don't get it. I guess you never will until you live it, but I think this gives you the closest possible look I've seen yet. Thanks to Peg and Cindy for letting me share it as well. <3

Autism Night Before Christmas
by Cindy Waeltermann

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
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent…
"And on goes the attack

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

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

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

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

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 jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
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 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 my shoes
And I'll assure you

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

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

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