Tuesday, 29 May 2012
Its not very often that I am at a loss about what to do but lately my mind is a whirlwind and my body is not far behind. My train of thought is scattered and my heart is often a flutter.... the anxiety is there and its making its physical appearance through a recent five pound weight gain (Hello... I'm Cassandra and I'm an emotional eater) and a beautiful cold sore planted directly in the middle of my top lip.
Recently I've been having some "issues" with Nick and Riddick and I struggle with how to manage them.
Nick is now 16 and is engaging in what the social worker calls the "survivor phase" which often comes after surviving a traumatic event or illness. Some people find God and religion, some people have a complete life change and others live each day like there will be no tomorrow.... Nick has chosen the later.
Why go to school when education doesn't matter if your dead, why follow the rules when rules make life boring and since I've beat cancer I want a life full of excitement, Why spend time with your family when friends just want to laugh and have fun all the time......
I logically see why this happens, and in my heart I am glad that he is "healthy" and has friends to misbehave with and acting like a shit must mean that he is feeling better then he has but still my patience as a mother gets tested and on a certain level I think that I am feeling left behind. Don't get me wrong I have no desire to partake in his teenage drama (been there done that) but for the last year I have been there every minute of every day. Taking care of him and keeping him safe, reconnecting on a level that faded when he started preschool and discovered that there is a world outside of Mommy. Now suddenly I'm pushed to the back burner and my role has become banker, chauffeur, chef, maid, personal shopper and warden. I get it.... but it doesn't make it easy to cope with, the therapist says I'm normal so I guess I have to take her word for it.
Now on to Riddick.... oh my sweet stress inducing Riddick....
Riddick's learning skills take patience, lots and lots of patience. He is a slow learner and it sometimes takes a very long time for him to retain knowledge and skills. It once took us weeks for him to remember the difference between a truck bed and a trunk.
He is almost nine and more often than not Maxwell is more accurate with knowing his colours then Riddick is. Riddick is learning at an early kindergarten level and sometimes that is too advanced. According to the testing he functions like an average three year old.
Riddick also needs constant supervision to not only remain safe but to keep on task. I have had issues with his education since day one and despite having testing done, getting professionals to work closely with the school and providing the tools that are recommended but unfunded (such as a weighted vest) things haven't improved. More often then not I get notes home that say things like "Riddick threw spit at friends today" "Riddick pulled a girls hair in line today" "Riddick was opening the bathroom window and yelling out it" "Riddick grabbed another students bagel and took a bite out of it" blah blah blah
On a personal level I really like his teacher and EA and I think that in a social setting we could bond over cocktails easily but as an educational team we don't really mesh. I think that perhaps my expectations of them are too high and they simply cant meet them, I don't know whether this is because of board/school imposed restrictions or personal/professional issues but I get so frustrated.
After multiple issues and major safety foe-pas they finally backed me up and acknowledged that Riddick would be better suited in a special education classroom and so after getting board approval in September he will be moving to a new school.
Since our meeting though it almost seems like they are now more then ever just buying time until the end of the school year when Riddick will no longer be their problem.
Riddick is supposed to have an EA at all times but on more then one occasion I have seen him out of the boundaries on the playground annoying the bigger kids without an adults eyes on him at all. I have brought this to the attention of the teacher and was assured that Riddick had an EA.... clearly my eyes must have been lying. Then today I popped into the classroom unexpectedly to bring running shoes for gym, imagine my surprise when I saw Riddick sandwiched on the carpet with 30 other students making a failing attempt to look at the white screen as the teacher attempted to teach some advanced grade 3 math..... Riddick cant count past 50 most days!!!! How can he be expected to learn anything when he is subjected to work that is far beyond his understanding??? And where was the EA, the person that is supposed to assist him in remaining seated, keeping his hands to himself, not shouting out etc.... she was apparently assisting with EQAO testing in another room. This is the stuff that bothers me, the negative notes come home but of course they would, he isn't getting the supervision or education that the testing shows he needs.
I know that the teachers are overworked and underpaid and they aren't miracle workers but the "fibbing" to me just drives me bonkers *insert angry face*.
Their claims that Riddick always has assistance is not true, their statement that Riddick is given modified instruction separate from the class is also not true, at least not all the time.... what else isn't true?
Had I not stopped by unannounced I never would have known that Riddick was unassisted and learning about things that for him are like rocket science. I wouldn't have heard the collective groan from multiple students when Riddick went back into the classroom and shouted "hey guys I'm not going home" which by the way got no response from the teacher.... how wonderful it must be to be Riddick in this classroom clearly so loved by his peers.
When your child is unable to express what happens in the eight hours that they are out of your care it is unnerving and frustrating.
Recently we took Riddick back to the doctors because he makes statements that just aren't true such as telling the teachers that he is going on a plane, or claiming that he along with Nanny and Uncle Zack were driving around looking for me because I was lost or most recently telling the teachers that I don't feed him breakfast. What we discovered is that Riddick is very often unable to tell the difference between fantasy and reality. If it thinks it then it must be real, the fact that he wanted pancakes but instead was given cereal means in his mind that he didn't eat because it wasnt what he wanted. This is a frequent problem because you simply don't know what is real and what is made up when talking to Riddick, I need accuracy and truthfulness from the adults that oversee Riddick's care when I am not here.... lies, omissions and half truths leave me without any knowledge of how the day went because Riddick gives me a concoction of what occurred last year, last week or simply in his imagination. I am seriously considering homeschooling.... but I would need massive amounts of vodka... Just kidding. I am keeping my fingers crossed that the school change brings massive improvements.
Tuesday, 22 May 2012
In just a few short weeks for the second time I will be lacing up with my wonderful Wondermoms and we will be participating in the Canadian Cancer Societies Relay For Life.
Last year was difficult, I was completely engulfed in Nick's treatments and while hearing so many success stories and seeing the sea of yellow survivor shirts was encouraging hearing about all of the pain, loss, relapses and deaths was heartbreaking.
The luminaries were beautiful but it certainly drove home how many people are effected by cancer.
I was so glad to be surrounded by my friends but I fought desperately to keep it together partly because I didn't want to embarrass myself but mostly because I was terrified that if I lost it emotionally then I would let myself venture to places in my mind that at that point I hadn't yet visited.
Cancer is a word that everyone knows but its also something that unless you've encountered it personally you don't know everything that goes along with it, in addition to worries about living or dying there are also concerns about the pain, the struggle of the finances, the emotional stability of the friends and family and much much more. Remission also doesn't bring an end to the cancer battle despite what many people think. "Late Term Effects" are lasting, bothersome and often painful and problematic aspects of the treatment.
For Nick these effects are severe acid reflux (which often causes nausea & vomiting), enlarged internal organs, endocrine issues and a failure to grow.
So you see..... the word "Remission" doesn't mean that everything is great, its certainly a wonderful word but its not a secret password that makes life a fairytale.
All of these reasons are why I relay and I sure could use your help.
If you are able to donate any monetary amount I would be incredibly appreciative and who knows.... maybe with your donation there will be enough money raised to find a breakthrough and end this horrible disease and the need for its equally horrible treatment.
So what would you say to cancer, here's what I'd say.....
F*CK YOU CANCER.... TOGETHER WE WILL DESTROY YOU!!!
Link to donate to my Relay For Life
If you do your banking online you can also chose to donate by using Interac e-payment from your bank account, the email account to send the payment to is firstname.lastname@example.org