Archive for May, 2011

Tis the season!

May 30, 2011

The days are longer, the sun is brighter, and the world seems a little bit brighter, right? For most of us we are lucky enough to feel a little bit more of a jump in our step as winter turns to spring and spring to summer, but for our Dude this change reaks havoc in his litte body!
As of right now he has what they call an unspecified mood disorder, because of his age his doctors are reluctant to nail a name to it. Which I can respect and appretiate. But it dosen’t change the fact that there is something going on on the mood scale! Season changes are hard on him, even with his medication holding he can go from one extreme to the other, happy and hyper to withdrawn, mad and sad, and very quickly!
It of course causes some major chaos in our home, stresses me out, so I can’t even imagine how he feels!
As he gets older he is getting so mature and now able to verbalize how he is feeling with much more accuracy then prior years.
I have had people say to me recently “he is so grown up, he is so well behaved!” , well here is the brutal truth people…..he is, but let me tell you it takes a lot of work, he tries so so hard, he has to try harder then most to keep it together! He has 4 years of major therapy under his belt to teach him coping skills, and he uses them every second of every day. So when other kids his age act out (in their age appropriate way) he holds it together, because he knows with in himself if he gives an inch, he’s gonna go a mile.
Dudes personality is truly a blessing that helps him alot, he is a caring, respectful, sympathic kid, he always has been, that has not come from therapy! So you mix that with intense work on his part, and you get this 9 year old wise beyond his years.
I am so proud of him and all of the work HE has done to beable to sit in a choatic classroom without melting down, to pull off good grades with none of the assistance he is supposed to have!
So yes these season changes cause an uproar within him, but you won’t see that because of him and his hard work! He saves it all for us, because when he walks through the door at 330, he is safe to let it go, to have a meltdown, to cry and scream! Which one of us can say we control ourselves for 8 hours a day every minute of that day? Ya not me that’s for sure!
So happy Spring/summer, we will, even though for 2-3 hours every evening we are calming him, reassuring, giving him sensory input or for that matter totally advoiding anything or anyone because he has had to deal with that all day, and for crying out loud he is going to be him in the evening!

A heartfelt THANK YOU!!

May 25, 2011

Initially I was going to email this, but then I wanted everyone to know just how I felt!

To my Fellow Committee Members,
As this is our final week of our journey I wanted to take this opportunity to let you all know how much gratitude I have for each and every one of you.
When we started this process I gotta be honest I didn’t know just how gruelling and time consuming it would be!! When we started out we were friends, but let’s be honest not super close, and at best I had coffee the odd time with the odd one of you. Now I am not sure who I would rather spend my evenings and weekends with when I am away from my family!
Through an incredibly hard year for me personally, you all helped me more than you know! Be it not making me feel guilty for not attending a meeting, a quick hug, or even just a quick smile, you all grew from casual friends, to some of my dearest.
The incredible dedication and enthusiasm you have all shown truly inspires me, and is at least admirble.
Yes there were peaks, and yes there were valleys, but I have never seen so many people with diffrent opinions come together, not judge, put their opinions aside for the sake of our children!!
At the end of the day each of you is amazing, talented thoughtful and caring. And I couldn’t have imagined what you have taught me, that in lite of anything if you want something bad enough it can be done, through hard work, determintation, more than our share of meetings, and some good solid common sense, you made this happen!!
I cannot forget the community either, I knew we were a close knit town, but WOW people have come out of the wood work, weather the amazing talented support from BDSS, parents, kids, grandparents, heck even people with no affiliation to the playground! The many hours spent baking, banking, donating, and participating truly blow me away!! I could not imagine a more heart felt and caring community to be a part of. And you girls are an intricite part of that community!!
Thank You from the bottom of my heart, for letting me be a part of this amazing journey!!
Kirsten

Yes I admit I was wrong with a capital W!

May 16, 2011

Looking back at how naive we were 4 years ago! After much pressure to our family doctor we were finally referred to a pediatrition. We took our list of concerns in with us, and the doctor performed a gruelling physical on Dude. Not much was said during that first appointment, but “you should go home and look up Sensory Processing Disorder”.
Hmmm well that didn’t sound to bad, I mean he was a picky eater, and he struggled with touch and smell. I mean that’s what this weird name must encompass right?!
WRONG!! oh so wrong! When we got home and I plunked in front of the computer and hit google, I was over whelmed! You mean to tell me that “sensory” isn’t smell, taste and touch??
I was able to find some good resources that explained just how complex this disorder is, and was armed and ready when the diagnosis came in as suspected, along with others.
This was our introduction to SPD, now I am not going to go into all the medical mumbo jumbo regarding SPD, because trust me it can get VERY confusing!! I am a researcher and found that reading books, articles, etc helped me guide Dude on this journey. We learned that he is both seeking and advoiding, which in it self is a TON of fun (insert sarcasm)! We soon learned that though he could hold himself together at school, by the time he got home he was so over stimulated, or under stimulated he would have intense melt downs. Here is where the fun came in, trying to figure out at any given time if he was needed or not needing sensory input!
Needless to say it was and still is alot of trial and error. SPD gets more complicated when you add other diagnosis to the picture, and it turns into a complete and utter jugling act.
I know I know I have been told a lot that I should be in a circus, but really I want lions and horses and elephants, not a screaming child you can’t touch, or maybe should touch, who hates sounds, but screams at the top of his lungs without noticing, who won’t eat fruit, but oh boy bring on the meat, and who gags at the slightest smell!
Ahh the joys, so apparently I was complelty wrong in my assumption of what SPD was, since I have learned there are more than your 5 basic senses, and that this disorder impacts more than just what you eat for lunch!
This will be the one and only time that I will admit to being wrong so take note! Because In this circus I am the ring leader 🙂

A few of my Favorite Things……

May 12, 2011

Ok so anyone that has ever met our little punky, knows just how much sparkle she has, and just how much of a blessing her humor is to our family! That being said I would love to share a few of my favorite moments…

1) As I was nursing the little one (yes quite a few years ago!) I turned her over to burp her. What the heck?! She had what appeared to be a black hole on the roof of her mouth? I passed her over to my very experienced Grandma to have a look. SHe had no idea and suggested I call the doctor. At this point we didn’t live in town, but were visiting, so I made an appointment for right away, as it looked to us like her mouth was rotting. Take her in, and the doctor has a look, looking slightly confused he goes and gets some nasty looking tweezers. Oh look at that, her mouth is NOT rotting, but there is a nice smiley face sticker suctioned to the roof of her mouth!!! This was our first time meeting the staff and doctors in town, and she still makes them chuckle!

2) I would say maybe age 1 and a half, I am making supper and give the kids some chip and dip for a small snack. As I go in to check them Punky is completly covered, hair and all in chip dip! Now this was a regular occurance, and still is with anything she can get her hands on, paint, stickers, markers you name it. I suggest you look up the book “Ain’t GOnna Paint no More”, and you will see exactly what I mean!

3) Maybe age 2 now, and again Mommy is busy in the kitchen, how the gardening shears ended up in our living room, I still don’t know. Well what would you do if you had a pair of shears? Yes of course you would use them to cut off all your blond curls, and no not a trim on the side, but just the entire block of hair right on the top of your head!!

4) Moving on a few years now, and remember these are just a few of my favorite things. Again I am making supper and all is quiet in the living room. When I go in to say supper is ready there sits Punky with a bowl full (and I mean to the top full!) of white perfectly round balls. “Ummm what are those?” at first I am thinking marshmellows? Ya nope she had sat for who knows how long and precisly rolled the icing out of Oreos and was eating them with the fork! And for your info she ate all the outer parts aswell, I think in an effort not to get caught!!

5) I get home from work one day, and head into the washroom, there sits one of her dolls on the sink, I look a little closer and written across the dolls forhead is “I AM GRUMPY!!”, apparently when her children are grumpy they will take their time outs in the bathroom!!

6) Ahhhh bed time, one of my favorite times of day, I love my sleep, as much as I love coffee and chocolate! With a good book in hand I lay my head down, I feel something out of place and reach to adjust my pillow. SOmething crunchy?? I have a water pillow and was wondering how it had turned crunchy? Nope not the pillow, but a pile of Pine cones in the pillow case! I must remember to ask her why they were there!!

Now here are a few side notes, I still have the sticker, and the hair! I also have a ton of increminating pictures!! But most importantly I think the lesson I have learned from all of these, is I should stay out of the kitchen 🙂

I will take the triumphs over the turmoil please!

May 10, 2011

Spring is finally in the air!!! As the school year nears it’s end, and I will be honest our house has already checked out for the year, I sit and reflect on what this year entailed for our Dude.

This has been one of complete turmoil on an educational level for our little man.  It has completly drained his parents, and required a new med regime to get him through.  And as any special needs parent knows this is t he time of year where you sit  around the table and re-evaluate their IEP’s, etc.  This in itself can be extremly exhausting for everyone involved.  This Mama bear is T-I-R-E-D!!! and trust me when I say thank God my kids energize me!  We have a lot of weighing and back and forth to go through.  I never expect people to understand, or know all of my childs Dx’s,  but I hope that at least peoples minds and hearts for that matter are open to learning.

All of this being said the little triumphs that our Dude has accomplished this year have brought me peace and joy!! He started to skate! He learned to tie his shoes! He is choosing his outfits (yes I have to make sure they match!)! and he is mostly dressing himself! I am sure any parent can remember with great happiness when these milestones were hit!! So what, it took him years longer than most, but ya know what? He DID IT!!!!
He has turned, what feels over night, from my little boy, into this incredible young man. He has continued to overcome adversity, and has learned to explain how he is feelings. He has started to stand up for himself, we have worked so hard as a family to have him accomplish these “little” things, and now that he has I have come to realize just how HUGE these actually are 🙂

So yes I can honestly say that though it has been one of our toughest years to date, I would do it all over in a heart beat, because the triumphs were so worth it!

Please keep passing the triumphs, and I will continue to wade through the turmoil!!!