Seriously Couldn't Make This Up

Welcome to my crazy life as a single parent of two not so typical (but amazing) kids. This is my slightly crooked view of the world.

Jan 1

Lucky 13

by Colleen

Well it’s the start of a brand new year!!

I’m hoping that 2013 is going to bring good things. I’m still on the look out for Mr. Right. It’s been a long time since I even ran into a Mr. Maybe or even a Mr. Really? The truth is that I spent the better part of 2012 purposefully single. I really haven’t had energy to put towards anyone else. With a little luck this will be a good year for that. I’m back on my favourite dating site though so please cross your fingers that if any are blog worthy that it’s in a harmless kind of way. More wannabe super heroes…..less axe murderers if you read me.

Looking back over the year we had some real positives. The kids and I did quite a bit of camping this summer and for the first time in years Drew actually attended summer camp. Two of them as a matter of fact and not only that but he chose to go. That was huge for him as he tends to hate changes to his schedule, hates new experiences, and social situations are challenging for him due to his Autism. So he did a Lego Robotics camp…..which interestingly was run by…..and filled with others that were very, very similar to Drew……if you read what I’m putting down here……as in all very literal, not great in the social skills department, and probably on the spectrum kind of kids so he fit right in……and then a few weeks later he and Camryn did a gymnastics camp together. Both were very successful and Drew vows to go back again to both next year. Yay!!

We discovered both kids have a knack for music. We figured this out when Drew was having great difficulty playing the flute in his band class. He had played it the entire previous school year so I was shocked that he seemed to be getting worse. So I sprang for private music lessons only to discover he had been given a broken flute. Not pointing any fingers but just coincidentally his band teacher didn’t seem to like him very much. Hmmmm. Interesting coincidence don’t you think? And since Drew hated band but loved his private lessons I decided to continue with those….and since Camryn and I were there anyway for half an hour she got piano lessons. In the fall Drew switched to guitar in the fall (to “impress the ladies”)…..and got a Christmas card from his crush so he’s pretty thrilled. Camryn stuck with piano but also wants to take violin, drums, and guitar so we’ll have a few more years of lessons ahead. Cam has already started writing songs. And we won’t be sharing any of celebrity or our millions with the school band teacher……I’m just saying.

Drew also had a developmental aide from July right through until the last week of December and made some progress. I’m happy to report that he can now make a sandwich and isn’t quite as afraid of knives. Some blood work earlier this year meant that his needle phobia has only gotten worse. I hate to tell him that he has allergy testing coming up next summer. If they won’t sedate him they better sedate me…..that’s all I’m saying.

This last year has had it’s challenges so I’m really not sorry to see it go. So to send off in style the kids and I went to grandma and grandpas’s house tonight and had a New Year’s eve pajama party. We went all out with snacks, noise makers, plastic bead necklaces, and glow bracelets. It was one of the best NYE’s in recent memory.

Wishing you all a wonderful 2013. …especially all the non-axe murderer single men out there. May you find the single mom (with two wonderfully quirky children, a crazy dog, and even nuttier cat) of your dreams. Happy new year all!!

 

 

 

Twitt

Family Adventures Holidays

No Comments »
Dec 13

The magic of friendship

by Colleen

I’m guessing that by now I have about 3 people still checking my blog. It’s been about 6 months since my last posting. There are lots of reasons for this but in a nut shell I just haven’t had it in me to write anything. I’m hoping that I’m kind of back on track.

Today I wanted to use this forum to tell you a story of a girl named Wanda. She was a student at my junior high school. Wanda was not your average girl. She was in a special needs classroom that despite being across the hall from my homeroom was largely not a part of our everyday program. I would see Wanda at lunchtime in the hallways. She was a sweet, naive girl probably about my age, 13 at the time. She had blond hair cut in a bob. She wore clothing that was slightly over-sized for her skinny frame.

From time to time she would wander over to us and my friends and I would chat with her. It was usually something about Tinkerbell or Peter Pan, her favorite movie. We were always kind to Wanda but I know many other students weren’t. She had cognitive delays and clearly couldn’t tell when she was being teased.  This seemed to be a funny joke for many of my fellow students. I wish I had had the ability to stand up for her more.

I still think about her from time to time even 25 years after the fact. I wonder whatever happened to her. Did she fall in love? Did she get married and have children? Can she live independently or is she in some sort of sheltered care? I just don’t know.

I read a story this morning of a child with Autism that was bullied. The bullies videotaped their antics and placed it online as some sort of badge of honor. I am the mother of a child with Autism now and it breaks my heart that there are still people in this world that don’t see the humanness of a person with a disability.

Andrew does not have cognitive delays. In fact he has a a very high IQ. But Drew does have disability in that he can’t do some of the things his same aged peers are doing. He has social difficulties. There are times he might seem rude to people who don’t understand him. Andrew can be very blunt but he never means to hurt anyone’s feelings. There is a beauty to kids like Drew. His heart is pure.

Drew would never bully another child. I don’t say that with blinders on. I know children can be cruel. But his teachers, other parents, family and friends have not seen Drew tease another child, ever.  Kids like Drew are in many ways more human…..more humane……than the bullies.

I teach my children to be kind. I teach them to be accepting. We have actually spoken about the cruel acts that other children have inflicted. We talk about how to treat people with differences. We talk about human rights. I don’t think it’s just Drew’s Autism that makes him so kind. I think kindness is also taught actively. Understanding and acceptance is taught actively. Love and friendship is taught actively. That means anyone can be loving and accepting. It’s a choice.

It’s easy to see the differences between a child like Wanda and yourself. It would have been easy to exclude her or see her as less. Wanda had a mother who probably cried in heartbreak for how others treated her. Her mother knew when Wanda was being bullied even if Wanda didn’t. Anyone of us could have a child like Wanda or Drew. I did.

People tell me all the time they don’t know how I do it, raising a child with special needs. In my case raising two children with special needs. You do it because you love them. You find the strength because you have too. There is no magic to it. The magic is to teach your children to see the human within the package. There is nothing more powerful than to teach your child how to be a friend to all. If you want to make a difference in the world that’s it. The big secret to world peace, teach unconditional love and acceptance of all humans regardless of status, skin color, religion, sexual orientation, cognitive ability, gender, etc. People think that world peace is something out of reach. It’s not. If you can see the human within ANY package then you will have made a difference in the world.

Regardless of your attitudes or actions in the past, you can be the changing force that we need in this world. Drew is a human being with the same need to be accepted and loved. He needs friends even though he doesn’t always know how to go about getting them. He is funny and kind. He loves cats more than just about anything else and he loves hugs. Drew is just as human as you or I. If we all make the effort to see the person despite ability or disability this world will be a better place for us all.

Twitt

Colleen's Rants

No Comments »
Jul 24

As the toilet flows…..

by Colleen

Today has been one of those days. Things started out okay. We all slept in which was wonderful. Then I scored a brand new pair of Levi’s for Camryn and I got them for free. Yes, absolutely free. So things had the makings of a great day.

This is where I should give you a bit of background before I continue with the story. When Drew was little he used to be fascinated with toilet paper. He loved to roll and unroll it. At first it seemed like a cute little habit. Later he would put wads of it in the toilet and flush until the thing over flowed. We have had more than one overflow flood. We also went on a family trip to California. When we first arrived at the hotel the adults were busy unpacking while Drew snuck off to the toilet and plugged it. I explained what had happened to the repair guy but I could see in his eyes that he didn’t believe me one bit. That was one of those moments as a parent where you want to crawl under a rock and hide.

Anyway, it’s been about 5 years since the last time that Drew really caused any havoc in the bathroom. I mean occationally I still find the toilet paper re-rolled in a messy ball but I can live with that. I guess I let my guard down. Well today was the day that I realized we aren’t out of the woods….or the flood zone for that matter. It was actually a genius plan on his part. Now I don’t for a moment think he actually sat and thought through the plan this way but there was a certain genius to the fact that he would be in the other room with clean hands.  I came along and saw a small bit of toilet paper that appeared to have not quite made it down. So I flushed the toilet. That is when the water started to rise and rise eventually spilling up and over the rim and down on to the floor in a cascade. Thankfully I have natural rock tiles on the floor in this particular bathroom. I knew they would be okay. However the water reached the walls and the floor vent and then poured down into the basement. I could hear the trickle as it cascaded down, me helpless to stop it. This is a half bath and so the only absobant thing near by was a small white handtowel. You can imagine how useful that was at stopping the flow.

A prettier waterfall than the one I had

I screamed to the kids to get towels. This was the moment when the Autism splattered all over the wall (so to speak). The two of them started running around the basement frantically, Drew with a worried look on his face and Camryn flapping her hands as they ran in erratic circles. I realized that I was going to have to be more direct than say I needed help. Kids with Autism sometimes have trouble problem solving especially during a crisis. So I told them to run upstairs and bring me “lots and lots of towels” and to do it as quickly as possible. Seems clear enough right? Yah, apparently not. So at least a full minute passes as water continues to pour down the floor vent and water dripping from the ceiling downstairs, running down walls, and soaking the carpet. I run upstairs just as Drew starts coming down. He has a hand towel from the upstairs bathroom.

To back up just a bit more….a few months ago I decided to try to help Drew be more independant. I asked him to go get me a plate one day. He ran to the kitchen, stood there a moment and then said “Okay where do we keep the plates?”. We have lived in this place for 8 years and the plates have always been in the same place. That day I realized that no only did he not know where the plates were but he couldn’t even guess. I mean he’s been to other peoples houses and likely seen them get plates out of a cupboard. Drew couldn’t extrapolate that the plates are usually kept in a cupboard and there for he could search for them. Now fast forward to being able to find towels. Just like the plates we have kept towels in the same place for 8 years. There is only one closet near the bathroom and you’d think it would be obvious. Clearly it’s not for Drew….or Camryn for that matter.

I ran upstairs and grabbed some towels and left the closet door wide open. Drew clued into where they were and grabbed an oven mitt rather than something else helpful. Camryn did bring some towels once she figured it out. Once we contained as much water as we could, wiped down the basement walls, lifted the ceiling tiles to help air them out, and took a breath I decided to take a few photos. This is the aftermath:

 

The kids helping mop up in the basement. I was busy drying off everything from the crawl space.

 

Sigh. Hopefully tomorrow will be better.

 

Twitt

Disasters and more Uncategorized

No Comments »
Jul 7

The journey of a ten thousand steps….some of them backwards.

by Colleen

I’m on a journey of sorts. As many of you, my wonderful readers know, I am a single parent with two kids with special needs….although the medical community has only acknowledged Drew and so in their eyes Camryn is basically typical. Maybe they should spend the day at our house. ha!! Anyway, you may also recall that 19 months ago I was rear ended by a young man while I was stopped at a red light minding my own business. Since then I’ve been so lucky as to get a fashionable new wardrobe……

Sexy gown that opens in the front. There was a sign behind my head that said absolutely no cameras allowed. Bwah ha ha.

I’ve worn literally hundreds of these in the last year and a half. I’m considering just getting my own. Kind of like bowling shoes. Eventually it just makes sense to have your own set. Am I right? All the gowns are some shade of blue. I’ve heard that blues and greens put people at ease….yah until you realize that by donning these colors horrible things are going to happen to you.

In my 19 months I’ve had 3 MRI’s, 2 CT scans….3 if you include when the damn machine broke half way through my second one and they had to do it again. And yes there is a theoretical risk of CT scans causing cancer down the road…..so having been scanned three times is awesome!! I’ve had my spine x-rayed and my retina’s scanned. I’ve gone to approximately 150 physio sessions not to mention the daily exercises I do at home, massage which doesn’t feel as good as one you’d get at a spa…..read they flippin’ hurt, then 5 OT appointments so far….but I get to play Wii so those are awesome…….I’ve had my nerves zapped in my arm to make sure they are working….yup, they are. They really, really are!! Try imagining banging your elbow about 30 times in a 1 hour time period and you’ll have an idea of what nerve conduction testing is like. Yay. I’ve seen brain experts who told me the prognosis was grim, and a few others who agree. Then the other camp says no way, we can get you you’re life back. Most days I believe the cheerleaders but some days I believe the nay sayers.  I’ve had 3 injections into my neck in the space between my vertebrae….those are about as fun as they sound. I had an allergic reaction to my medication which resulted in hives all over my body and I currently take about 18 pills a day just because of my accident. Down from 30 though. Woo hoo. It’s all good.

This was 8 days after getting a needle for an MRI.Isn't it a "purdy" shade of red...um pink...um yellow?

Yet here I am still chugging along. In many ways I have a lot to be depressed about. I hate the days when I’m so tired and nauseous that I can’t function. Balance problems are interesting. I know people think I’m drunk sometimes when I fall down….probably doesn’t help my cause that I usually start laughing when I do. I mean it’s completely ridiculous and absurd. If you’re not laughing you’re crying so I chose to laugh….that is when I’m not laying on the sidewalk bleeding. Okay, sometimes then too. I’m weird what can I say? =)

I’m completely off work right now and I really like my job. I know that I’m helping people when I’m there. I miss the kids and the families our clinic sees. I miss feeling useful. I miss my buddy Audrey. She makes the insanity of the office survivable. I am hopeful that I can get back to work someday soon. Right now I’m shooting for the fall but it’s hard to say. My new rehabilitation program keeps me pretty busy. I am grateful though. I have a totally awesome team. My physiotherapists, Lisa and Andrea make me laugh and since I see them the most it keeps me going. I see other people at rehabilitation who are much worse off than me. I know how very lucky I am. For starters I’m still here. I have a brain injury but I am still me inside. I see some of the other patients and I suspect that they are very different people than they once were. I get chills just thinking about how much worse shape I could be in. For that I’m grateful. I’m working on balance, some of them are working on just being able to sit up on their own or bring a spoon to their mouth. I have nothing to complain about.

I have my kids. They can be challenging but they are so wonderful and fun…..well, usually really fun. We are starting to see a bit of attitude from Drew and Camryn’s needs drain me many days but I’m still here to love them, my arms still work to hug them, and my brain is still working well enough to appreciate all that I have. One day all of this yucky stuff will be a memory. I will have walked my 10 thousand steps of this medical blip in my life.

Be thankful for what you have today. Really think about and appreciate what you would miss if it was taken from you. And most of all smile. It’s what gets you through the junk. These are my reasons to put one foot in front of the other:

Although these two little guys also make me smile…..

Mr. Cuddles (the blue bunny) and Sock Monkey (the....well monkey of course).

 They look innocent enough but really are trouble makers!!

Twitt

Daily Life Medical Adventures

No Comments »
Jun 25

Finally….

by Colleen

 

Okay, I’ll start by saying sorry for the huge delay between posts. Life has been insane lately.

Camryn especially has needed a huge percentage of my time. She’s been having difficulty going over to her dad’s house for his visitation times and we are just now starting to see the ripple effect. Her sleep has been terrible which given that she now has to sleep in my bed with me means that we both have a rough night. She needs help falling asleep and needs constant reassurance that I won’t leave her there after she closes her eyes.

However the biggest problem we are now facing is eating. She was already a fairly picky eater to begin with. She would eat a balanced, albeit boring selection of foods. Basically as long as I bought a specific kind of yogurt she would eat it. Most of her foods had to be prepared a certain way. It wasn’t always the most interesting way to live but it was working. I first started noticing that she would complain things tasted funny. She stopped eating some of her favourites. This meant that the variety she was eating was now getting even more limited.

The next sign was that the quantity went down. She was a grazer by nature but there have been days when she would sit in front of a plate of food and tear up. Even worse she would say she was scared of the food or of overeating. She says she doesn’t want to get fat. This from my skinny minnie girl. So I’ve had to sit with her at meals and reassure her that it was okay to eat and that it was also okay to stop eating when she felt full. Camryn reports that her dad forces her to finish everything on her plate. I won’t go into all the details but it’s clear that she’s getting quite anxious about having to eat.

So as a result we got referred to a clinical dietitian who confirmed that Camryn is indeed missing several hundred calories a day and is not getting key nutrients. We now have permission to feed that kid bacon, ice cream, and just about anything else with extra calories and fat.

Luckily Camryn hasn’t quite figured out the whole counting calories thing. However I worry that we are on the road to an eating disorder. If nothing else I think I can say that her eating itself is disordered even if we aren’t quite at the point of being able to  label it.

I can’t tell you how much time and effort it has taken to be there for Camryn over the last few weeks and months. It feels like she can’t hardly leave my side anymore. Some days I have to sit with her while she eats and then stay with her when she’s going to bed. I’m a bit scared and a whole lot tired.

I will probably detail our trip through this new world of food issues in future blogs. I hope to be able to write a bit more consistently even if they are just short blurbs about the insanity of my existence lately. Please bare with me on the nights that I crash at 8:30 pm instead of writing something. Hopefully our days will become boring again.

Boring is good!!

Twitt

Daily Life Medical Adventures

No Comments »
Jun 7

Green Girls

by Colleen

Camryn has been tested for Autism twice and twice I’ve been told that she’s quirky but not on the spectrum. Granted the first time her behaviour was so unusual they suspected she’d been abused but after investigating that they came back and said nope she’s “just fine”. Um….what? Her play was so different than a typical child you thought she was abused but somehow now everything is just hunky dory right? Yup, awesome.

Then the second time she was assessed the psychologist said she was kind of leaning towards a diagnosis but not completely sure. She asked if she could speak with someone who maybe knew Camryn back when she was 4 or 5. I suggested her former preschool teacher thinking the massive tantrums, refusing to speak, and other unusual play surely would have stood out in her mind especially since we had professionals working with Cam and the school during that time. But then the teacher told the psychologist that Camryn loved the house centre and was always playing with dolls….which for the record she would hold but never played with them…..as in ever!! I tried to show her how to feed the baby or put it to sleep. She usually just got bored with my attempts and walked away. So how the teacher “remembered” Cammie playing with dolls is beyond me. It was like she was describing a completely different child. Anyway the psychologist decided that Camryn was “typical”. I’ll admit that I was so frustrated that I cried. Probably not the usual reaction to news there is nothing wrong. It just felt like nobody understood.

As someone who works on a team that diagnoses Autism you’d think I’d know something about it. However I feel like I need to keep my mouth shut about it now. For years I pushed someone to take a look at Camryn, to have her assessed not once but twice. The baby with the delayed speech, hated to be held, would spin for hours, and had unusual play including lining up her toys rather than playing with them. The kid with obsessions to things that went so far beyond what any other child would have and then bites herself and rips her own hair out because you weren’t fast enough getting through the previews on the 5th Wiggles DVD of the day. But if you chose not to put it on again she’ll smash her sweet little face into the wall or throw herself down the stairs……at 18 months old. The hand flapping had mostly disappeared but four times in the last month there she was just a flapping away. Usually when she gets excited about something. Yah……she’s sooo typical. But in order not to look like a crazy lady who wants to have a typical child labelled as Autistic I don’t have much choice but to sit back and wait for some other professional to come to it on their own.

In the mean time I’m enjoying some of the little quirks about Camryn. One of them is that she often uses the wrong words for something. Glosette Raisins are called “Galoshes” in our house. It doesn’t matter how many times she is corrected they will always be galoshes. We also sometimes buy ice cream treats. They come in a waffle cone that has chocolate in the bottom of the cone. Most kids would call this simply an ice cream but Camryn calls them “chocolate triangles”. I know what she means but would you if you were talking to her?

I dated a guy who had a cat named Smoot. Camryn insisted on calling him Smooch. I dated this particular guy for more than 3 years and she never got the name right. Not once.

Some of the language errors she makes are a bit easier to get the gist of what she means. The other day while at one of my medical appointments she told me that hospitals make her weary. This kind of puzzled me so I asked her why. She told me she was nervous of so many people she didn’t know. This in itself is a bit odd for a 10 year old to be that worried about so many strangers who really showed no interest in her to begin with but given her experiences lately I guess it’s understandable. I tried to figure out why she used “weary” in her description because she was certainly didn’t sound tired of it all. Then it occurred to me that she probably meant either leery or wary. A possible combination of the two. She used it again at home. I tried to correct her but I’m guessing it’s like the galoshes. It will stay weary.  

And the newest one is “Green Girls”. She frequently asks me if we have any green girls for snack. Other than a hankering for female leprechauns I was kind of puzzled what she was wanting but she always asks anyway. Took me three months but I finally realized that she was talking about Girl Guide Cookies. I can only assume that one of the girls selling them must have had on a green shirt the last time we bought them leading Camryn to assume they were the Green Girls of Canada.

Oh my quirky girl!!

Twitt

Daily Life Funny things the kids say or do

No Comments »
May 27

Cataclysmic fireball

by Colleen

I guess I should start by acknowledging that I probably brought this upon myself. If you are a follower of teachings such as The Secret you believe that what you set as your intention will come to be. In this case I put out there that I had spent the last few blog postings on Drew and I really should find something blog worthy to write about Camryn. Ta da!! The Universe has presented it’s answer to me.

I should also say that I have found a way to go out with quite the bang. The ball was really set in motion a few years ago when our local public school failed to be anything we needed at all for Drew. Stay with me this really is going to be about Camryn…..I promise. Anyway Drew ended up changing schools to a specialty Arts Centred program. Despite his very linear and literal brain Drew has done quite well there. It happens to be a middle school (grades 5-9) and so as Camryn has been wrapping up her grade 4 year we were looking forward to her move to the new school in the fall. I have said for months that I felt like we were just putting in our time right now. Camryn of course does better academically than Drew and so she is surviving at this particular school with more success than he was. However there is a small contingent of playground moms at Cammie’s current school that I could really do without. It can be like a slow torture getting through the 20 minute wait after school everyday when they come around. Don’t get me wrong there are a few really nice mom’s. It’s just this small group that drives me crazy.

They are the mothers that only talk to you when nobody better is around….and the second someone they consider more important steps within 20 feet they will literally turn their back to you mid sentence. I find this rather amusing because I’m a weirdo who finds that sort of thing funny. It helps you see the pecking order of all the playground moms I suppose. As someone who isn’t trying to fit in anymore I can appreciate the inner workings even when I get snubbed. These same mothers are the ones who ask you who you invited to Camryn’s birthday party so they know if their kid wants to come or who reel off a list of all the kids who will be away the first week of July because their kid will be so bored and want to know if Camryn will be in town. Gotta love being the “better than eating paint chips” family. Like being last picked for a team right? The same moms who have said to me “I can’t imagine what’s wrong with families who don’t come out for the Parent Council”. Did I mention that I’m not on Parent Council either? Awesome right? Open mouth, insert foot. I love watching it all unfold knowing I get to leave soon. I am truly on the fringe of it all.

And yet I have this sort of membership card just because our older children were in Kindergarten together. So I’ve gotten to feel the love for about 8 years now. Yay!! I think they are more drawn to me this year when I took the I don’t give a flying (you know what) attitude. Not really my intention to draw them in but kind of a fun social experiment. Now they have to work even harder to exclude me.

As I said there are a handful of wonderful mom’s loosely (or not so loosely tied to this group) so I do get some benefit. I will miss them now that I am blowing myself and my good reputation up.

You see today was the Volunteer Tea. An event held in high esteem so that this handful of “super” moms can get their arses kissed along with the truly selfless volunteers at the school. The one nasty mom is hell bent on having the power that comes with her position. She brags about how great it was that her kid was getting help even before she paid for an assessment (instead buying recreational property). Guess whose kid’s funding was used for that. Mine. Andrew’s aide time was cut in half so that her child could have assistance in the classroom. And she brags to me. Yah, love you too lady. Another of the mom’s wants to be the martyr. Always detailing how she made 65 reindeer hats in two days or had to handout fundraising sausages on such a cold day last year and how it was boiling hot the year before but since nobody else stepped up she did. Here’s your hero cookie lady!! Then there is the third mom who is socially awkward in just about all that she does but secretly wants to spy on everything her child is doing all day long and this is the most efficient way to do that. She’s the kind of mom you are sure still wipes her child’s rear end at home even though he’s 11. Gotta love a helicopter parent. And for those few that I have on Facebook that are likely reading this post I promise you are not one of these Moms. If you are on my Facebook friend list then you are a super mom without being a “super” mom.

So as part of this Volunteer Tea the kids were supposed to wear their blue school t-shirts today. Shoulda, coulda, woulda……but Camryn didn’t. So are you thinking what I am thinking?…….the next step is Juvie right? A horrible infraction……at public school. The kid was fed, clothed, had her homework done…..but heaven help us, she forgot her damn blue shirt. Now I did’t go to this years Volunteer Tea. Mostly because I’m still wearing my bad attitude from this year and really didn’t do much in the way of volunteering. I will say that in the past however many I have attended there has not been one single year where more than 75% of the kids were wearing that year’s color scheme.

And now you are asking yourself, how on earth did the school continue on this way. Children….yes little kids who forgot to wear a particular color. Shameful. How do they ever expect to amount to anything if they are forgetting such important things at 9 or 10? That is the behaviour of a say 2 or 3 year old but at 10?

You can always detect the non-criminals.....they are the ones wearing a blue t-shirt. I swear.

So how, you ask, was this handled? Oh by the the school’s Assistant Principal and Camryn’s classroom teacher dividing the kids into two groups. Those with blue shirts and those without. The blue shirt kids, all 60 of them, providing an audience for the 10 or so that forgot their’s. Then the 10 children were berated and told by the AP and the teacher how ashamed they were of them, how they let everyone down, disappointed the parents there for the tea, and in essence ruined the performance. They were then told they had to apologize to the Principal who had watched this public humiliation. As Camryn left the area crying she was told to try to hold her tears in. Awesome. Yah, we made you feel like crap but don’t cry.

Ironically at the school this month’s Circle of Courage Traits (the ones the kids are supposed to aspire to) are Generosity and Belonging. Fitting don’t you think? Wonder who the hell they are expected to learn those from. I guess their no good, bad attitude mothers are to teach them because they sure as hell aren’t going to learn them from the school staff….apparently.

My daughter was made to feel small and useless. Ask me how impressed I am? Camryn who is already a little bit socially quirky and gets bullied and excluded by her peers, has incontinence issues which certainly doesn’t help at school, has anxiety, who is dealing with all kinds of issues at her dad’s house, and doesn’t want to eat for fear of “getting fat”. Yes, please teach her a lesson. She really needs to have the single grain of self esteem she had left blown away.

So without much left to lose I spent most of the night constructing an email detailing how happy I was with the giant footprint left on my kids heart and soul. Detailing how amazing it was that they imprinted this on the fabric that she weaves for herself. Years from now I bet Camryn will be able to look back and feel the acute agony of today as if it were a fresh wound.

I think that sometimes as adults we forget how our words sting a child. I hope that the intention today wasn’t to crush my child but no matter how I look at it I can’t help wonder what other possible intention the two of them had? I can not even imagine how they could spin this to be an unintended consequence of an otherwise innocent interaction. I wonder if either of them would have the balls (metaphorically speaking) to say that to Camryn if I had been standing there watching. I didn’t send my child to school today to get humiliated. I can’t tell you how sick I feel that I dropped her off this morning for that lesson. I remember watching her joyfully bounce out of the car and take off running. “Bye Mom, love you, have a great day” from her cute little face. “You too Sweetie”. “I will” she yelled back as she bounded up the steps to the front door.

How dare they!!

Photo Courtesy of Psych Central (www.psychcentral.com)

She is now afraid to go to school. She said “I just wanted to run away and never show my face again”. “My heart got torn out by my favourite teacher”. Listening to her sob in the back seat of the car today ripped my heart out too. There was a primitive kind of pain in the cry as if it was coming right from the depths of her being. The kind of pain that can’t be fixed by a hug or a few soothing words.

Tomorrow is class picture day. Camryn desperately wants to go so I will be taking her for the photo and then we are walking out. It also happens to be the “roof top” photo as well. This is where the whole school is photographed together. We won’t be a part of that. As I detailed in my letter to the three staff members involved “Since she doesn’t seem to be a valuable member of the student body anyway there seems to be no reason to be recorded as such.” What I really wanted to write was “Suck it!!”

Wondering how crazy the school board will think I am if I declare my intention to home school Cam for the last 5 weeks of the school year. I think our lesson plan would consist of:

  1. Raise Camryn’s self esteem.
  2. Clean tread marks off her heart
  3. And learn how to have her report card mailed to her.

So how popular do you think I’ll be now?

Twitt

Daily Life

No Comments »
May 23

Two words: Epic pukefest!!

by Colleen

 

Alberta Children's Hospital. Photo Courtesy of Wold Architecture News (www.worldarchitecturenews.com)

 

So last week I wrote about how Drew’s lack of growth prompted the pediatrician to order an Xray and some blood work. I think the Xray was meant to determine if his bone growth was indeed an issue and the blood work was an attempt to find a cause.

Last year he went through genetic testing for Muscular Dystrophy to see if that could explain Drew’s extremely low muscle tone. This required him to have blood drawn. In the end he didn’t have MD but we still don’t have any answers about his muscles. But life goes on and that was a year ago. Now we had to face the idea of needles again. He was so incredibly unimpressed with having to go back to the lab. It took all week to warm him up to the idea and I resorted to bribery just to get him there.

On the day of the trip which was last Friday he was remarkably calm. This from a kid who had spent the entire week freaking out if I even brought up the topic. Now he seemed fine. This is what they probably mean when someone says it’s the calm before the storm. Little did I know we were already in the eye of the hurricane.

A calm moment for the kids who are sitting infront of the photo mosaic in the front entrance to the hospital.

Everything was going so well. He was happy for the car ride to the hospital. He was good into the parking garage and he even sat nicely while we checked in for the Xray. I figured the Xray would be the easy part so we’d do it first. Somehow I must have known that we’d be in no shape to do it afterwards. Got that done and it was so quick and easy. We were doing so well. Yay us!! So off to the third floor we went.

The lab was wall to wall people which wasn’t good. I figured Drew had that much more time to recall the horror he felt and hear other children crying. But when the first baby came out screaming he hardly noticed. Only a quick glance away from his iPod game and then back he went to playing. After a little while a friend of mine came in with her two little guys so the time passed quickly for me as well. We probably waited close to an hour but even when his name was called Drew was okay.

“Wow” I thought, could all the preparation and a full year of maturity be just what we needed? Yah…..the answer to that is a big fat NO!! The instant Drew walked into the room and saw the chair we were starting up the rickety tracks of a roller coaster ride. As if strapped in when you suddenly realize what a stupid idea this was we click, click, clicked up to the top of that first drop. At this point Drew started hyper-ventilating. This would come into play in a little bit. He was clearly fearful and started saying “I don’t like this” over and over. Initially I had asked Camryn to wait in the waiting area knowing that my friend Mel was there and that she would be fine playing her iPod. It was at about this moment that I realized she had followed us into the room. So now I had two kids, one of whom is panicking and the other is scared but not sure what she needs to be afraid of. However I couldn’t really deal with Camryn at that moment because Drew was so upset. I quickly told the the lady that Drew had nearly fainted last year and so she had him lie down on the bed.

Okay apparently she’s never worked with Drew or a kid like him before. He did climb up on the bed bless him but I think to say he laid down would be a misrepresentation of the facts. It was more like his bum was on the bed and he was sitting in a V-shape because there was no way he was going to relax. So after some attempts to sooth him we gave up on the bed and I sat in the big chair with him on my lap. We had done this last year and although I can’t say it went great then either he did okay with it. He was still hyper-ventilating but I managed to talk him down from the state he had been in. He was able to slow his breathing down for short periods of time. While I did this a second lady entered the room to help. But when the needle went in and the screaming started a third appeared to closedthe door. I assume we were scaring everyone.

That was just too much for Drew. Now he was trapped and the panic got worse. He did his best to cooperate and I have to give him credit for keeping his arm still despite being absolutely terrified. Finally it was over and he realized that he had gotten through it. Last time he jumped up right afterwards and had to be caught by the two women in the room as he almost fainted. This time I kept him on my lap for a few moments. However the lab was busy and the next family had been brought into the room. So we picked up out disheveled selves and started moving ourselves out. Drew immediately felt faint and we were told to have him  sit down on the floor which he did. We waited several minutes as he continued to cry and turn ghostly white from breathing too quickly. Eventually I got him calm enough to walk back into the waiting area. It was a little less busy by this point and he laid down on the couch as he had done the previous year. Within a few minutes he said he was feeling a bit better so I had him try sitting up.

Yah…..wrong move Mom.

Soybeans. This is what poison looks like in our house.

Now for those of you who don’t know Drew personally I should tell you that he has a strong intolerance to soy and since soy is in virtually every kind of processed food there are lots of nights that Andrew pukes his guts out. Birthday parties, well intentioned moms who bring tempting cupcakes to school, or even a change in the ingredient list of our so called “safe” foods can trigger Drew. So he’s become very good at knowing when he needs to throw up and also getting to the bathroom on time. Camryn on the other hand is the kid who sits up in bed and throws up all over herself before she realizes what’s going on. Drew is just well trained for this.

So there we were sitting on the rounded bench seats in the waiting area with 11 other children and parents when Drew lifts his hands to his mouth and pukes right through his fingers. Being that he has Autism he isn’t really aware of how horrid this is for the on lookers or that maybe trying to run to the garbage can or washroom would be a good next step. So he sits there for heave number two as well. I’m not sure if I’ve ever moved so fast in my life but I just jumped up once I realized what was happening, grabbed Drew by the shirt and hauled him to the garbage can…..which I might add was right in the middle of the room. Hooray, an audience!! Drew being unaware of the disaster unfolding around him lets his pukey hands drip vomit from the seat over to the can creating a yucky mess.

Of course he didn’t mean to do this but he suddenly yells out “Eggs. I see the eggs I ate today.” Yes sweetie…I’m sure everyone needed to know that. I managed to avert my eyes from the 11 people who were watching in horror as this unfolds. Drew stands up from the garbage can and says I think I’m done”. Knowing him so well I tell him to stay by the garbage can in which he promptly starts puking again.

In the meantime Camryn is blissfully playing her iPod as if nothing was going on at all. She was entrapped in the arced line of vomit from the chair to the garbage but there she was just a swinging her legs and pressing buttons. Meanwhile the entire waiting room is fixated on Drew and the disaster that is unfolding. New families are streaming into the room unaware and I am frantically trying to go between keeping Drew from passing out into the garbage can and steering the multitude of strollers around the puke on the floor. ”Housekeeping is on it’s way” one lady says reassuringly. The other lady is desperately trying to move people past Drew whose legs are blocking the walkway. Does anyone bring me Kleenex or paper towel? Nope. The first woman comes back with apple juice of all things. “Have him drink this. It will help” she says. What? Is she kidding. The last thing you give a kid who is currently projectile vomitting would be more fuel. Give him a sip so that he can then yell “I see the apple juice and the eggs I had today”?

So I call Cammie into action. She proved to be an excellent little helper and brought me paper towels….one at a time mind you but she was trying to help. After Drew was finished we wiped ourselves off enough and tried to slip our without much fanfare. I think we had had enough of a spotlight for my liking. I apologized profusely and thanked the poor man from housekeeping who was now mopping the floor. Drew’s clothes as well as mine were covered in splatter and his eyes were puffy and red which were in stark contrast to his chalky skin tone.

Drew showing his arm after removing the Band-aid. You'll notice the lack of blood letting bruising. Amazing isn't it?

As we were walking out of the building to our car and me still holding his arm to make sure he doesn’t pass out, he says “that wasn’t as bad as I expected”. Really Drew? You actually imagined worse than this? I have puke under my finger nails and in my hair Dude!! I love you but are you serious? Then as we are driving home he reminds me that I had promised them ice cream afterwards. Here we had single handedly eliminated the need for a half dozen families to eat lunch and he is thinking about ice cream? But he was right. I had promised them we would buy some on the way home so off we went. Thankfully I had baby wipes in my car and so I cleaned my shirt off the best I could. I probably smelled like a mixture of baby powder and pukey eggs as I ordered 3 ice cream sundays. Truly awesome fun. I recommend it.

Let’s see all you typical parents handle that!!

 

Twitt

Medical Adventures

No Comments »
May 17

The boy can eat

by Colleen

Drew cuddling with our 15 pound dog. You'll notice that the dog doesn't look that small compared to Drew.

 

Drew has always been small. He was in the 5th percentile for weight and the 25th for height when he was born. He’s the smallest kid in his grade 7 class. And when I medicate him he is usually in the 6-8 yr old category for dosing despite the fact that his 13th birthday is fast approaching.

So he’s tiny. However the first clue that puberty is upon us is showing itself. That boy is eating me out of house and home. The other night for a bedtime snack which a few weeks ago consisted of milk and 2 cookies has become:

  • Milk
  • 4 cookies
  • Yogurt
  • A bag of microwave popcorn
  • 3 granola bars
  • a slice of cheese
  • apple slices with peanut butter

 

Not an uncommon bedtime snack lately. I'll be remortgaging the house next week.

 

It’s more than I could eat for dinner!!

Interestingly though Drew is not growing. Not up and not out. It is a constant battle to keep him at 66 pounds which he’s been hovering around for the last several years. The clothes in his closet are the same ones he was wearing 3 or 4 summers ago. Granted this suits him just fine. Because of his Autism he hates new clothes. Having to switch between winter boots and sandals is very stressful for a guy like Drew. He’d much rather be hot than adjust to a change in seasonal clothing. He would happily wear his ski jacket all summer long but come fall he’ll have trouble switching back into it from his lighter coat. He’s happy when the clothes are at least familiar year after year.

So when we saw the pediatrician earlier this week his growth….or lack thereof was discussed. The doctor has been weighing and measuring Drew for about the last 6 years and he was slowly inching up until the last little while. His growth curve has flattened right out and he is now below the lowest line on the chart for weight and dropped well below his own curve for height too.

Because of this the doctor has ordered X-rays to check his bone age and growth plates. This will be easy enough to do. I don’t recall him ever needing an X-ray before and the sounds may frighten him a little but with enough preparation I think he’ll be okay. The tough part is that she also ordered blood work.

Drew during a happier moment this week.

Some of you who have been reading my blog for awhile may recall that last summer Drew underwent genetic testing to see if he had Becker Muscular Dystrophy. This was a “simple” blood test and thankfully everything came back normal but the test itself was very traumatic for Drew. He’s terrified of needles. So much so that he used to panic if he even saw a pin like the ones used for poppies around Remembrance Day. Even if that poppy was being worn by someone 20 feet away. To him it was sharp and posed a serious threat to him.

He went semi-willingly to the test last summer but accidentally looked at the vial of blood coming out of his arm part way through and turned white as a ghost. He sobbed uncontrollably and then when it was done he stood up only to start fainting. Thankfully the two ladies drawing the blood were able to catch him before he hit the floor. He had nightmares about it for weeks afterwards.

He is not happy about having to do this again and it’s been on his mind ever since Monday. He was completely unable to cope at school on Tuesday and cried so much in his science class that the teacher actually emailed me to see what was wrong because all that he could get out was that he was scared of blood work. Drew is in a “regular” classroom with typical peers. Thankfully everyone seems to accept Drew the way he is and the other students don’t seem to be put off by the fact that this soon to be 13 year old boy is willing to cry unreservedly in class. He held it together the rest of this week but tears up whenever he’s reminded of the impending test.

So I think tomorrow is the big day. We will head on up to the children’s hospital and try to get this test done. I’m bribing him with ice cream afterward but I’m not so sure that it will really do the trick. There isn’t anything in the world that Drew wants enough that makes it worth getting blood tests for. Thankfully he is fairly compliant and will probably go through with it in the end.

I’m sure a glass of wine…..or four…..are in my future as well. But I agree with him, I’m not so sure it will make it worth it for me either.

Stay tuned…..

Twitt

Daily Life Medical Adventures

No Comments »
May 2

And it’s not even Mother’s Day yet

by Colleen

 

Andrew chose a picture book for bed time and Camryn is "reading" it to him.

 

From time to time I get asked what it’s like raising a child with special needs. There is no easy answer to this question. In some ways it’s very different from bringing up a typical child. There are certainly more doctor’s appointments…..as in “I should have my own parking spot at the pediatrician’s office”.

Just to give you an idea, Camryn has a family doctor, a pediatrician, a children’s psychiatrist, and now she’s seeing a psychologist who does behavioural consulting. We’ve also seen two other pediatricians , two neurologists, and another psychologist. This was an attempt to figure out what to diagnose her with….yup still waiting on that.

Just in the last 365 days she has also seen her regular pediatric dentist, an orthodontist (for braces), and two periodontists (for her gums). Drew has slightly fewer doctor’s but sees a physiotherapist and occupational therapist from time to time. It’s busy. Each person wants to hear the kids developmental histories so I’ve repeated the stories about 500 times by now. I’m seriously considering tattooing it on my forehead.

I still work with Drew on his full name and phone number even though he’s turning 13 this summer. He’s learning to tie his shoes and although he’s painfully slow he can do it. He also needs help with cutting his meat (or even bread) and we never eat soup because it’s just too messy. Camryn still cries most day at school and she has a change of clothes in her bag just in case of an accident. I still buy pull-ups and diaper wipes and have learned that you can get a prescription for these. Who knew? Today I forgot to send a ticket for milk at lunch and she became so overwhelmed with sadness that it ruined the rest of her day.

There are challenges no doubt but like so many kids they are funny and sweet. They can brighten my day as quickly as they can drive me around the bend. In many ways I’m so used to them being atypical that it seems normal to me. I never really planned on having kids with special needs but since I’ve never been the mother of a so called “typical” child I’m not sure I always see the differences in the moment anyway. However there are those times when you get a wake up call.

Just the other day the kids saw a commercial on TV talking about Mother’s Day which is coming up in less than two weeks. Camryn asked when it was so we looked at the calendar. Drew jumped up and ran to our creative corner. A few minutes later he emerged with a surprise for me. He had carefully crafted a bracelet out of colored paper clips.

This is actually a difficult task for Drew because of his fine motor difficulties and it was honestly big enough that I probably could get it around my neck and not just my wrist. It was such a sweet thing to do but it made me wonder at what age other kids would stop making this kind of a gift for their mom’s. Of course I put it on and wore it with pride because of how difficult this was for him but it’s one of those moments as a parent that you realize just how different your life is from those of your friends and family. There is a beautiful quality to my experience but it can feel lonely at times too.

In the end I have two amazing kids who bring joy to my world. They haven’t grown out of snuggles and monkey hugs. They still giggle until they snort (even in public). And every moment is so real and unguarded. I wouldn’t change a thing about them…..even if I could.

 

 

Twitt

Daily Life Holidays

No Comments »
«Older Entries
Brand New Day Theme by Caroline Moore | Copyright 2013 Seriously Couldn't Make This Up | Powered by WordPress