The good, the bad, and the nut cracking......



Drew tolerating me getting a photo


Today was just one of those days for my kids. When they got out of school I heard all about Camryn crying in class. This is unfortunately not an unexpected thing lately. I'll save all the reasons for this for an upcoming blog but it basically wasn't a stellar day in candy land. Drew had basketball in phys. ed. today and I'll start by saying that gym is usually not one of his favourite classes. His dad and I both played sports but physically Drew really struggles with anything that requires coordination and energy. Then you add on the social aspects of a team sport and the risk of public ridicule and it's often everything Drew has to participate in these kinds of things. Today they also happened to have swimming lessons after school and while Drew usually likes swimming he had apparently forgotten about them. So when I brough his bathing suit up to him the camels back was broken. It was just more than he could take. Let me say for the record that we have about a 30 minute turn around time from when the kids walk in the door until we need to be dipping our feet in the pool water but sometimes you just have to have a good cry so I sat calmly watching the minutes tick by on the digital clock in Andrews room. All the while dying inside to rush out the door. Thankfully once he got some of it out he collected himself and we still made it just in time. A miracle I tell you especially because neither kid could tell how stessed out I felt. Thank you high school drama classes. Oh did I mention I played the charcter of Rabbit in Winnie the Pooh in grade 12......the most high strung creature in the story. Yah. That really wasn't acting....just saying.

Their lessons are an hour long and I was kind of dreading how much worse they might feel by the end of it all. When you start with crying it usually doesn't get better after that. It was 5:30 and they both came out looking reasonably calm. Phew. So far so good. As Camryn got close to where I was sitting I asked her if she had a good class. In response to my question about her lesson she says "Well if by good you mean it was a nut cracker then yes, it was great". She said it with a straight face and I could tell that she was being completely serious. No sarcasm there. I'll admit I was a little lost for words. What do I say to that? "Oh great honey, glad you had so much fun it was like having your nuts in a vice". I didn't have the heart to explain to her that she doesn't have any "nuts" to crack. Oh dear......where to start?

Does this migraine make me look phat?

Andrew has a very good friend that he's had for over 3 years now. She came into his classroom part way through the year in grade 3 and they have been thick as thieves ever since. Last weekend they went to the movies for the first time without an adult. Now I'll start by saying that Andrew doesn't know his own phone number, or address, and he still sometimes has to ask if we have an "s" at the end of our last name....."yes honey we do". He's sweet but a little bit helpless at times. However he is also a pretty good kid and has been showing that he can make good....or at least better decisions over the last year. An example of this was when I left Drew and Camryn watching a movie inside the house while I gave the dog a quick walk around the block. I had been gone only about 5 minutes when Andrew who has a cell phone pre-programmed with my cell phone number calls me quite distraught. He says that he and Camryn have looked all over the house and can not find Augie (our dog). Okay.....where to start? "Sweetie, I'm walking the dog so he's with me". "Oh good he says, we were so worried". So it's not perfect. He didn't put it together that me walking the dog implied that I would take Augie with me but at least he noticed the dog wasn't there, tried looking for him, and then made the decision to call me for help. It's real progress people!! When he got lost in Disney World a few years ago he didn't even ask for help so this is huge.

So you'd think it would freak me out sending him to the movies without an adult. Yes and no. His friend Allissa is the kind of kid that could probably be drafted to be a secret agent. She's savvy, resourceful, and very capable. The kids are almost exactly the same age but they are polar opposites in many ways. Somehow their friendship works. Allissa talks and Drew listens. She directs, he follows. It's actually a beautiful thing. I fully hope and expect that they will get married someday even though both of them think that idea is "really, really gross". So even though they were at the movies without a parent I knew they would be fine because Allissa would take care of Drew.

To be honest it was nice to have one kid amused for the afternoon. One of the lingering issues from my car accident almost 4 months ago....not that I'm counting.....is migraine headaches. I never actually smashed my head....that I can remember, but I did suffer a concussion from my brain bouncing around inside my skull. Drain Bramage!! Awesome. I've had all kinds of fun times with these headaches in the last few months but most were lasting only 2 days. Well I'm now on day 12 of this headache. Despite losing some brain cells I'm pretty sure that's not good. Last weekend it was really pounding so I happily drove Andrew to the movie theatre to meet up with Allissa and her mom. I figured that he would be amused and I would have one less human being to try and keep alive for the afternoon. I parked the car and we got out, walked to the theatre, bought tickets and food, gave them the rules and then sent them inside. It sounds quick but with the mile long line up for food it was almost 30 minutes before Camryn and I headed back out to the car. I put my hand into my pocket to get my keys. Hmmm. Not there. Checked my other pocket....not there either. I tend to put my keys in weird places....and by weird I just mean never in the same place twice so I wasn't completely alarmed at first. Checked my purse and jean pockets.....where are they? That little bit of anxiety started creeping in. Ran through all the places again, still no keys. Now I was starting to be very stressed. I stood in the line up again, got to the ticket window.....nobody has turned any keys in....Crap!! My headache is just throbbing by this point, I'm stuck at a theatre, and I just want to go home and relax on the couch. Grrr. I considered calling AMA but what are they going to do? Unlock my car and then what? It's not like I can drive it without the keys. After what had been a week of having a bad headache and then losing my keys it was everything I had not to start crying there on the disgusting theatre lobby floor that I had sprawled the contents of my purse onto in my last ditched attempt to figure out where my stupid keys were. Camryn being such a sweet heart says "Mommy do you need a hug?" in an over exaggerated voice that you might expect from a Kindergarten teacher who's one "inside" recess away from cracking. "Yes darling I really do". We hug for a moment and then I decide to retrace my steps. I gather all my stuff up and we walk around the lobby, then go outside. The parking lot is littered with rocks and silty dirt from weeks of the mall staff madly trying to keep up with all the snow we've had. Now all melted away trying to locate silver keys on a silver key fob is a near impossible task in the sea of grey and with the sun beating down and my head pounding this activity becomes AWESOME!! I imagined that anyone finding my keys would have been easily able to figure out which car to steal since the key fob conveniently locates the car for you and will even start it. Really extra glad to have that feature at this very moment. I approach the area where I left my car expecting to see an empty spot but to my surprise there it is just sitting where I left it. Yeah. Nobody stole my car. That's a good start.

But wait......it's running. I figure I got back in the nick of time. Somebody found my keys and used the remote starter to try to locate the car. My brain hurts as I try to figure out what to do. I can only assume I am moments away from a confrontation with this person. As would be the normal reaction I reach for the handle and the door opens. What? Then as if time stands still I look inside only to realize that my keys are in the ignition....I left my damn car running AND unlocked. It was me. Nobody found my keys....I'm just an idiot. I walked away with it running.......for half an hour. Now it becomes painfully obvious that I've lost one more brain cell then I need to survive in the wild. Fantastic.

I was so stupid I probably deserved to have my car stolen. A real credit to the city I live in that at least 100 people would have walked by my car and nobody took it despite the big neon sign saying "steal me my owner is a moron". My only defense is that my head was very ouchie. Now that's an Excendrin headache if I ever saw one......it might cure the headache but can it make me any smarter? Sigh!

Sibling Rivalry?.....Where?

As an only child I felt a little bit overwhelmed at the prospect of having two children of my own. After all how the heck would I manage the inevitable sibling rivalry issues that come up. I try to conjure up how I would do this in an ideal situation. Now add the fact that I am a single parent and neither of my kids are "typical"....whatever that is....and toss all that into the mix. Yah, hmmm. Now what? Do they make a "So you're a single parent (who happened to be an only child) of two kids with statistically unique combinations of disorders who sometimes fight with each other." handbook? Cause if they do let me know where to buy it. I'd be all over that. Until then I feel a little bit like I'm finding my way through the dark.

My only real experience as part of a sibling pairing would be having 5 older boy cousins to "include" me during family holidays. I know what it's like to have one of them bite the bum of my Cabbage Patch Kid and hand it back to me. Thanks cousin Wayne-o. Just saying I didn't really want her back...and yes I still remember 28 years later.....and you better believe I'm still holding a grudge. I also know what it's like to be told "You're too little to do that" by the guys. Finally I was also taught how to sneak extra cookies for my cousins at the family dinners. Let's just say that while I was an only child I did get a flavour for what being part of the sibling pair was all about.

With this limited amount of exposure how do I then use that to navigate raising my own kids in a way that doesn't land one or the other in some sort of therapy? Or better yet doesn't land me in some sort of therapy. I'll admit that at times I feel like I'm getting it all wrong. I know I jump in way too fast. It makes me cringe whenever the kids start fighting about anything. I am completely aware that I do this and that I need to stop so that they learn to work it out themselves. Even though I know this and admit to it I must be doing something right because they actually really like each other for the most part. Maybe that's just luck but I'll take credit for it. I'm all over that. It's totally me!!

Sure Andrew sat on Camryn's head when she was only 2 weeks old. Don't worry she had a nice round head and was fine....see photo below. It's not like they never disagree or threaten to never be the others friend ever, ever again but I'd say they've been best friends pretty much their whole lives.

There is an innocence to their relationship. Maybe it's just the Autism or a combination of personalities but they are not sneaky or manipulative with each other. At least not at a level that other kids their same ages are. I can't remember a single time that they have ever willfully broken the others toy or walked over and push the other or even tried to sneak something out of the other kids room. I assume that by this age most kids are getting kind of savvy and may take something they want from their sibling and hope they don't get caught. My kids will come and ask permission of the other. If the first kid says "no" then there might be some tears and hurt feelings but never retaliation.

The way my kids interact with each other is just different from other siblings that I know. In some ways I'm grateful for this since I don't think I would know what to do if they were being mean to each other and manipulative but on the other hand I am sad that I don't see that at the same time. By these ages you'd expect to see some sophistication in their interactions but we are still dealing with very basic and raw emotions. Grudges in our house rarely last longer than an episode of Sponge Bob. It goes a little something like this: mistake, refused apology, hurt feelings, 23 minutes, and friends again. I've never heard one of them say something to the effect of "Well last time I lent you my toy you didn't take care of it so I don't want to lend it to you again". It's usually long since forgotten about by the next time the issue comes up.

But then there is this internal dilemma I'm having. Do you hope that your kids will fight more? Do you hope that they'll be tricky and nasty to each other? Do you hope they do hold a grudge sometimes? Well yah....I kind of do. You might think that is crazy but you miss it when it's not there. I guess it would be better to say that while I don't really want to see them fight more or in increasingly complex ways it would be nice to see the progression. Andrew and Camryn are kind of stuck at a point where things are very concrete. There is very little room for taking anything into consideration. If one of them had a really bad day and they are tired and sick it's not taken into account by their sibling. It's still a "Well he won't play with me and I want to play with him" followed by tears and hurt feelings. Then 23 minutes later....Voila!! I see glimmers of this starting to appear in Andrew but it is still very hard for either kid to consider the bigger picture. They often allow me to map it out so to speak but I'm not sure that either of them really gets the concept of contributing factors or that certain things need to be kept in mind when they chose how to respond to the situation. Right and wrong are clearly defined. There are very few shades of grey in our house.  

That being said there is still a real sweetness to their relationship. The other day I came upstairs to see them watching a television show that was a bit frightening. It was on a kids channel but had a creepy vampire in it. Camryn was a little scared by it. So this is how I found the two of them.

Okay I'll stop my whining now.

Wild and Wacky Flooring Problems

Legal disclaimer:
*** Let me say right up front that this blog is only a composite of events that may or may not have occurred and any likeness to a real individual is coincidental.....mostly......but maybe kind of real.....so please don't sue me if you are this person. Now that we have my disclaimer out of the way let the "totally hypothetical" story begin.

I bet even before you read this blog entry you'll assume from the title that I had some sort of home renovation disaster. That would make a really good subject for a blog since renovation disasters are rarely boring. However I have a different sort of flooring problem.

Namely I have a problem with a flooring store. It started out with my Oh my Murphy!! posting from February 17th. Things began okay. People read it and I got a comment and then shortly there after I got a second one. Sounds dreadfully exciting so far doesn't it? Okay but that's not really the whole story. The second comment was obviously not from one of my usual readers. It was an advertisement for a local flooring store posted in my comment section without my knowledge. I was not impressed so I tried to contact the store. This in theory should be easy since they posted their website address. Here's a hint: If you post your web address it also helps me (the blog author) find out who did it. It's kind of like when little kids play hide and seek and they put their hands over their eyes and say "I'm hiding come find me" or when someone spray paints their own name on the side of a building. My lawyer advises me that I can say "In my opinion it may be unwise to be so obvious". I wanted to say that I thought this was a completely stupid thing to do but I'll stick with the legal team.....wouldn't want to offend anyone by calling them stupid which is why I wouldn't say that this was a really stupid thing to do. I'm way to nice (and well advised by a legal team) to say that.

So I used my incredible detective skills and went to the website. I know....I even impressed myself. I'm so sneaky. I advised this store that I was not in the least bit impressed with them and that I would be reporting them to the Better Business Bureau (BBB) for their questionable advertising techniques. It is my stance that any legitimate business should not be randomly posting advertisements on unrelated blogs. It's called spam and I think we'd all agree that it is unwelcome. Probably why people named it spam after the delicious meat-like product sharing the same name. Although as a side note if you are poor enough to have to eat Spam try brushing it with mustard, coating it in bread crumbs, and then frying it. Trust me it's the only way this becomes a "food-ish" product in my books. So I did exactly what I said I was going to do and filed a report. A few weeks later I heard back from the BBB.

In the stores response the owner defended himself and proclaimed that I was unprofessional and malicious. My first response was something akin to "yah, so what's your point?". I was not aware that I was expected to be professional while being spammed by random businesses. I guess that is my oversight. Let it be a lesson to you all. When someone spams you the correct thing to do is that you are to like it and thank them repeatedly....apparently. My lawyer advises me that calling this individual a dumb ass would be inappropriate as it would only prove his point that I was unprofessional and malicious. So I won't say that. The lawyer didn't say I couldn't think it though. Everyone take a moment while I do that.......there. Thanks. I know I feel much better now. Since I had not been a customer or in anyway asked to be involved with this business I'm not sure I feel like I need to be professional. I didn't call him names or act abusively in my email I just said that I hoped he enjoyed his spoiled BBB report....and I still do. I make no apologies for my awesome attitude either. That might be sour grapes but it's the truth as I know it. He went on to say that he was almost totally sure that he didn't post any comments on MY page but that if he did he would need the web address of my blog so that he could review it. Hmmm. Interesting. I read that to mean that he doesn't think he spammed me in particular but can't really be certain because he's posted his ads on so many blogs without permission and that he doesn't really remember mine specifically. Great now I'm forgettable. Isn't that fantastic? Why don't you just pour lemon juice on my paper cut friend!! My lawyer advises against calling him a friend as this implies that we somehow know each other and that he would have felt a certain degree of entitlement to post on my blog. Just to be clear he and aren't really friends. I totally “unfriend” him.

So to be clear if I provide this highly professional business person with my blog address again he'll sit down and actually read it to see if it rings a bell to him because we are all quite sure that he took the time to read it before spamming it in the first place right? He then stated in his response that the only reason his business ever posts comments on blogs is to use them as (and I quote) "a learning resource" for himself, his family, and his customers. I guess that makes me a Learning Resource Specialist. Awesome. I'll add that to my resume right now.

Now you all know the secret to a successful business. No need to take a marketing class, or read a book, or even hire a firm. The secret to success is read random blogs that are totally unrelated to your business. I just saved you 4 years of your life and the cost of a university education. Yes, I know I'm amazing. Helping you is just what I do. But the real hero is the flooring store owner. It was so thoughtful of him to share this amazing business plan with us....his potential new customers. And here you thought you were just reading my blog. Now you know how to run a business. Look at how productive you all are. Such great multi-taskers. As your Learning Resource Specialist I'm so very proud of you.

So all this business advice got me thinking. Not only have I helped you but apparently I am also helping out this flooring store. That makes me so immensely happy I could punch someone in the face. My lawyer would like to advise that this is merely a metaphor for how unhappy I am and that I would never actually strike someone. While this is entirely true it doesn't change the fact that I still kind of want to. The owner of my new most favourite flooring store clearly stated that he only posts on blogs that he is using as learning resources. I wondered to myself just how could my blog help his customers? I'll admit this took quite awhile to figure out as I felt the link between flooring and my postings was not easily seen. You may also be sitting there thinking Colleens blog and a flooring store is like comparing apples with airplanes. Then it came to me. I wondered if he was losing sleep at night worried that his customers will find themselves on a first date from hell and try to steer them clear of the danger by sharing my entry The girls guide to avoiding an axe murderer (one of my personal favourites). After all I'm certain that would be what every flooring customer wants when they enter the store. See I just knew there must be some legitimate connection to my blog and not just a random series of events or a Google search that went sideways. He's trying to provide his customers with all their needs in one location. It's brilliant. Kind of like shopping at Wal-Mart. "Need lipstick, kitty litter, advice on letting your kid walk to the park by herself for the first time, and a new push-up bra....come to my flooring store!!" Hey don't blame me if that sounds stupid. It wasn't my business idea. I'm just sharing the knowledge.

I imagine that for years flooring customers would walk into his store and say that they are looking for hardwood flooring and information about Autism or they may say something like "I need to replace the tile on my kitchen floor....oh and I would like information about Colleen's dating life too. My friend recommended you". I'm so tempted to go into his store and ask for those things. Can you imagine the look on the staffs faces? I bet it wouldn't be very professional and would be similar to the look they'd give if I walked in and peed on the floor. I might even be escorted out. But wouldn't it be fun anyway?

My lawyer advises me that I need to say that nobody should go to a flooring store and pee on the floor because it wouldn't be very nice. But it would be funny!!

So as I wrap up this entry I will give my top Learning Resource Specialists tips:

1. It is probably unwise to chose the platform of a sarcastic, malicious, and completely unprofessional blog author to post your spam ads on. That is just asking for trouble. Yes I was the kid who could write opinion papers in school, get 100% and not even know anything about the topic. I'm just that opinionated. Be thankful I didn't name your store in my entry.

2. Openly admitting that you are using someone else’s intellectual property and ideas to further your business without even knowing the source that you got it from and presenting it as your own for profit might not be a smart thing to admit to the Better Business Bureau. Hello!?!

3. Making up a completely implausible lie about using my blog as a learning resource when it has absolutely nothing to do with your business rather than just saying sorry makes you look like an idiot. My lawyer advises me to state that this is only my own personal opinion and not necessarily fact.

4. Remember kids that lawyers will cover your rear end for you but they can't make the owners of flooring stores any smarter or less jerky. Of course that's just my opinion.

So in closing I'd like to thank this individual. Should he chose to post on my blog again everyone will know who this amazing business person is. And if he actually takes the time to read my blog....and I really hope he does....especially today.......I hope he enjoys this and all my postings. It's the least I can do to help him, his family, and his customers. No charge!!

*** This has been an almost completely unprofessional and malicious blog entry which is almost completely true (but maybe not entirely). Reporting of events was for dramatic purposes only. Any likeness to an owner of an actual flooring store is completely coincidental.....sort of. Thanks for posting your ad. Have a great day!!

-Colleen
(Executive Learning Resource Specialist extraordinaire)

The race is on....

 

Just goofing around

  

Many people who do not have a child with special needs or medical issues are often unaware of the services and funding that are available. Sadly even some of the families who would qualify don't even know about them. It's often the situation that a child may be diagnosed with something and then it's up to the parent to seek out the help that they need and qualify for. I must say that there has to be a better way because if you don't know what is out there in the first place then how the heck do you find out about it? I recall my first meeting with a social worker several years ago. It went a little something like this. Social worker: "So what services were you looking for Colleen?" Me: "What services are available?" Social Worker: "I can tell you about them once you tell me what sorts of services you were hoping for". This continued for several turns back and forth. Eventually I told her what in my wildest dreams I would like to have for Andrew. It shouldn't be a surprise to anyone that about 90% of stuff I was looking for were things they didn't offer anyway. Gee that was productive. Fast forward to present day and I'm much older and wiser but it's been a long process to learn the system.


I am extremely fortunate to actually work in this field for my occupation. Because I am on a team with the health region that connects people to these services all the time I knew where to start last summer when Andrew was diagnosed with Autism. Not that it hasn't also been a learning process despite my background but I sure as heck know that other families have it a lot harder than I did in accessing these things. We even have a new social worker through a government program called Family Supports for Children with Disabilities (FSCD). I'll start by saying I really hate that name. I accept that my children are not typical. I even sometimes describe them as having special needs. But to actually say my children are disabled is really hard for me. I get that the world probably views them that way but why do I have to as well in order to access funding? I can't tell you how many parents of the children on my caseload won't even talk to me about this program because they can't handle the word disabled. It's such a shame. This program offers funding for a number of different things but the one I was most interested in after Andrews Autism diagnosis involves treatment with an aide who usually comes to your home and works with your child for a set number of hours per week. There are actually two levels to this. One is considered less intense and has an aide that is the only person working with your child. The other includes a multidisciplinary team that usually consists of a psychologist, a speech pathologist, an occupational therapist, a physiotherapist, and the aide. Of course who sees your child depends on what their needs are. It's quite a process to access this higher level of treatment and it can be difficult to qualify for. Then there is the added burden for families with school aged children about trying to find enough hours in the day to actually have all these people see your child without giving up all the fun stuff about being a kid in the first place.

So having the background that I do I was pretty confident that I could get Andrew approved for these higher level services but was debating about whether I really wanted to change our lives quite that dramatically. Having someone come into your home up to 5 days a week is a huge adjustment. I know because I used to be an aide working in other peoples homes. I have to say just like any random person coming into your home you won't like all of them. That would probably be tolerable once a week but imagine every afternoon all week long for up to three years of funded treatment. Even if you like the person it's a lot to ask of families. Let's just say it's really not for everyone. So while there is a valid point to provide intensive intervention I see what that level of commitment can do to your family life. I was pretty settled on the choice to start with just the aide and see where we got with that when we were dealing with Autism. However now that we are facing Muscular Dystrophy as a possibility I have been forced to rethink this a little. Ongoing physio would be a huge benefit for Andrew. Regardless of the outcome of the genetic testing he still has ongoing motor difficulties. I thought I'd be smart and proactive so I contacted our social worker with FSCD to discuss this as a possibility.

To my heart break I was told that the option may now be off the table. A progressive condition would mean Andrew would be turned down for this type of treatment. In other words they won't put money into a kid whose motor skills will get worse over time.....even if it will slow the rate of decline and keep him walking for a few extra years. Despite the fact that he would make gains in all areas and the only ones he might lose down the road would be the motor ones it doesn't matter according to the rules. He's now a write-off on paper and is no longer worth the investment of time and dollars. I couldn't believe it. What a rip off!! Personally I think keeping people able to function and be productive for longer makes the most sense. In theory the sooner he becomes completely disabled the sooner he'll start costing more in resources, time, and money. That doesn't even begin to look at the benefit to him as a human being. Drew is an amazing kid with huge potential. How dare they tell me he's not worth it!! Of course they didn't really put it quite that bluntly but I knew exactly what they meant.

I felt really down in the dumps about this for a few days and then I decided that if the system was rigged against us once we get the results that maybe we shouldn't wait for them. It was almost like in the cartoons where I was sitting there kind of moping about this lousy turn of events when like an "Ah ha" moment with the little light bulb above my head it occurred to me. Maybe if I can start the process based on what we currently know about him including what areas he's struggling with we can get the help in place before we find out the test results. I had been eagerly waiting for word on the genetic testing but now I'm kind of hoping for enough time to do everything before we get the call. Talk about a roller coaster ride. If we can just have enough time to get assessments completed and have him approved then I don't need to worry that they'll turn him down based on something that might not start happening until he's an adult. Of course I hope the test results for the Muscular Dystrophy are negative but I can't sit on my butt now while we wait. I just won't let them steal his options away from us.

So we'll call this a side adventure to the main one. I've already rounded up the troops. A speech pathologist and occupational therapist who will do what those of us in the industry might call a "quick and dirty" assessment. The goal is to just get him approved with the least amount of fuss and drama possible so that we still have the option of treatment available to us. For anyone out there who thinks we might be cheating the system I absolutely promise you that this money up front will save everyone down the road. There are countless studies that say prevention and early intervention is a fraction of the cost of long term care later on. Besides, while I wouldn't change who my kids are I'd be lying if I said I didn't already feel a bit cheated by facing this diagnosis. Government programs works on absolutes. This one is no exception. They won't even book an appointment with you until you send in your letter of diagnosis of something they consider disabling so I'm playing by their own rules. As of today I don't actually have a diagnosis for Drew saying that he has a worsening condition like Muscular Dystrophy so technically he could still qualify for treatment. Don't you love when playing by the rules means you are more likely to win? How often does that happen?

Cross your fingers and wish us luck!!

Road trip

In the midst of all the craziness which seems to have become our lives lately Camryn had an out of town soccer tournament this weekend. I will admit that I was dreading it in every way. First because I am the assistant coach and so on top of everything else it takes to get two kids with their own unique challenges and needs out the door for a road trip I also had to worry about not forgetting the extra jerseys, soccer balls, and other equipment. I'm proud to say I didn't forget any soccer stuff and I also didn't forget anything that the kids really needed. Now I bet some of you are wondering if I forgot a child. Oh you know me so well. I'd like to say I didn't forget my kids either. Phew!! I certainly felt scattered enough that it seemed like a real possibility though. Of course I did happen to forget to bring my book that had only 2 chapters left in it and discovered that I had brought the next one in the series instead. So not only do I now know what happens, I'm a dozen chapters ahead of the book sitting on my night stand at home. Ten bucks says I never get around to finishing it. Sigh.

So the drive was several hours but was reasonably uneventful. Not like in the olden days when the kids were small and Camryn would scream non stop for the entire trip. Good old days? I don't think so. Now she's a pro....other than needing to use the washroom every hour with the tell tale signs of the whimpering and kicking my seat as she desperately tries to make it to the next stop. It's still better than the crying and screaming though. We arrived at the hotel to find that it was a complete zoo. Little did we know how big the tournament really was. There were children in soccer gear running around the lobby, in the elevators, and milling about in every hallway. At least we wouldn't be the noisy ones. Great news. We finally drag all our gear up to the fourth floor and eventually find our room. Apparently the new key cards that just scan rather than needing to be inserted completely baffle me. We stand there for what seemed like and hour as I tried to find the slot. Yah, I'm so brilliant....I know. Just don't tell anyone that I use a scan system at work and have every day for the last 3 and a half years. You would think it would have occurred to me sooner. Sigh. I never said I was any smarter than a hamster did I?

I'm not sure if it was just the dramatic wait for the room door to be unlocked but by the time that sucker swung open the kids were literally in awe of the place. They dropped their various bags at the door and ran madly around the room saying "Oh my goodness, oh my goodness". It was like a scene out of the movie Annie. They ran over to the king sized bed with no less than 10 pillows on it and rolled around giggling. Then they jumped up ran to the remote control and hugged it. When they had shown it enough love they ran into the bathroom to say things like "this is so amazing" and "I could live in this bathroom for my whole life". Looked like a regular toilet to me but they were impressed. I had to cut them off when Andrew announced that the floor was so clean he could eat off of it. "Eww. Please don't".

Now I will say it was nicer than some of the places we've stayed but hugging the remote control was pretty funny. Of course a few years ago when we went to Disneyland Cam was amazed by the toilets that flushed themselves. We were still at the airport waiting for our flight to leave when we made a quick bathroom trip. The toilet flushes while Camryn is still sitting on the stupid thing. To say that she did anything less than fly off that thing would be understating it. When she realized that it was only a flush she loudly exclaims "Disneyland is so great". The bathroom erupts in laughter and so do we. I didn't have the heart to tell her we hadn't even left our own city yet. If we had know we could have taken her to the airport bathroom and called it Disneyland all for the cost of airport parking.....sigh. So I guess I shouldn't have been to shocked that a hotel room would be all that and a bag of chips for my kids. It's not even like we never go anywhere. The kids have taken several trips and stayed in hotels before. Somehow though the wonder of this room was extra special for them.

Grandma came along for the trip which is always important with my children. It's not very often that I've tried to take them somewhere alone. There are days that run smoothly and others where you need to trade off with someone not already at the end of their rope in order that you don't go insane and runaway from home. Besides Grandma brought Baileys for our coffee and red wine for when the Baileys in the morning wasn't enough to get us through. Yes we did break open the wine both nights.

I wish I could say that the actual soccer tournament was as much fun as watching the kids run around the room screaming "Oh my goodness". Okay there isn't to much that could be funnier than that but I was hoping that the games at least would be great for the kids. We lost the first game something like 17-0. When the ref leans into the box and says "Do you know if there is a Mercy Rule in this tournament and you respond "No, there isn't" and he says "Do you want to make one?" that it might not be a great game. Don't get me wrong the girls did their best and they worked really hard right until the end which is something to admire but it would have been nice if the other team had maybe been a bit better sports and stopped cheering so loudly after about 10 goals. Most of us have been annihilated doing something in our lives and I'm sure their time will come too. The next two games were still runaways but not quite as bad as the first one. For the most part the girls seemed to shake it off and nobody cared that we came in last with 3 goals for and 30 against. Besides we got to stay in a hotel with a remote control and an amazing toilet. That has to count for something right?

Adventures in the lab.....

Part of this new found journey to see if Andrew actually has a rare form of Muscular Dystrophy is genetic testing. We already saw the neurologist who so kindly checked the box on the genetics form that indicated the reason for the test was to "Confirm clinical diagnosis". What an awful box. Sounds like the decision has been made. Of course there is no way to know until someone in a basement lab splices genes....or at least I imagine that's what they'll be doing but it kind of makes your heart feel heavy as a mother to see that check mark. In defence of the neurologist there weren't a lot of choices. I think one was "patient has a family history/shows symptoms". I bet that box sucks more than ours. The other was "To obtain baseline". Not sure how someone would get a baseline of their DNA. Is it expected to change? I was never good in science. I used to regularly feel faint in Biology and I electrocuted myself on the first day of Physics. I kid you not. It really hurt too. Chemistry and I were kind of friends but you'll notice that after grade 12 I've never looked at it again. Sorry buddy. I was only hanging out with you until I made some new friends.....now I hang with the Social Sciences. Psychology and I are BFF's.

Anyway, back to my story. So Drew needed to get blood drawn in order for the lab to get his DNA for testing. In all my reading I'm learning some of the key things I'll need to know if Drew does get a diagnosis. The gene they are looking at is called the Dystrophin Gene. Basically it helps the body produce enough dystrophin for the brain and muscles to work properly. With Becker Muscular Dystrophy which is what the doctor is looking for in Drew the body does not produce enough normal dystrophin for that to happen. From what I understand there have been more than a hundred different micro-deletions on this gene that have led to people having Becker's. It seems almost amazing to me that when so many things could go wrong with this gene that they usually don't. The people in the lab literally will have to look at the whole gene to see if anyone of these hundred possible problems has happened in Andrew's DNA.

Of course Drew doesn't know why we are getting the blood work. He just knows that we have to go. The poor guy is absolutely petrified of needles. I can just say the word needle and he breaks a cold sweat and will start to cry. I'm not even kind of exaggerating. He goes into full out panic mode. About a year and a half ago we were at a McDonald's eating lunch when a guy came in wearing a poppy for Remembrance day. Drew just about crawled over me to get away from the pin despite the fact that this guy never came closer than 15 feet from us. You can imagine that it was a miracle just to get Andrew to come to the lab willingly. I decided to take him to the Alberta Children's Hospital for the test. They are a fantastic bunch and I've even gone to get my own blood work there. I knew that if anyone could get Andrew through it those wonderful people would. Drew was fine until they called his name. He was so worried that even at 11 and a half he had to sit on my lap in the chair. He was sitting there the way he used to when he was little. I couldn't help thinking just how small he seemed curled up in my arms. My sweet baby boy having to go through something that for him was just terrible. I couldn't help but wonder if this would be our new reality. Him having to put up with who knows what because he had something none of us asked for or expected.

Andrew sat there so quietly. One of the technicians made the mistake of saying "There you go" as she was switching out the first vial and inserting the second. Drew happened to look over only to see his own blood snaking up the tube in his arm. He began to sob but remained perfectly still. I couldn't believe just how brave he was being. It was a moment of both sadness and pride. I wanted more than anything to trade places with him. Thankfully they only needed two vials so it was over before too long. Drew stands up and takes a few steps while the technicians and I are chatting. He turns around and is as white as a ghost. In his own Andrew sort of way he says "I hate to interrupt but is it normal for me to be feeling all fuzzy?". The two ladies who had just drawn the blood dash over to grab him and help him back to the waiting area to lay down on a couch.

He is laying on his back in this colorful room. Pictures of whimsical cartoon animals in what looks to be a circus train are framed on the wall. I can't help but feel that the room is terribly out of sync with how Drew and I are feeling at this moment. I sit down beside him on the couch and stroke the hair away from his red, swollen eyes. His skin is still blotchy and pale. He's never seemed so vulnerable to me. I sat there thinking about how much I hate this process and the worst part is that this just might be the easiest thing he needs to go through in the next little while.

After a few moments Drew sits up. His color is better and he asks if we can go home now. We leave the lab and head out of the hospital towards our car. As we get to the parkade I look over to see that Andrew has started to cry again. I grab him and give him a hug and ask what is wrong. He looks up at me with tears in his eyes and says "My whole life I've had the same amount of blood inside my body. How will I ever get used to living with less?" In so many ways I wish it were that simple. I desperately want his biggest problem to be having a few less vials of blood. I tried to explain that his body would make more but he just didn't seem convinced. How will I ever explain something as big as Muscular Dystrophy to a kid who doesn't understand biology yet? I really hope I don't have to.

By the time we got home Drew seemed much calmer. He had made it over the first big hurdle. The true test will be for the grown ups in his life to wait for results. I've been told by several people it takes a long time to get results. However nobody can tell me exactly how long a "long time" actually is. I'd like to say that right now even 24 hours of waiting is a long time to me. I hope that we don't look back on this time with a fond memory of when we still had hope this wasn't really happening to us. I hope that it was just a minor bump in the road of life and eventually will become a distant memory of what never came to be. But more than anything I hope that I never lose hope itself for that might be the saddest thing of all.