"Nice genes dude"

Let me start by saying that I am not at my bestest blog writing place today. I got a sum total of about 4 hours of sleep last night and have been stupid all day long. I can't tell you how many times my physiotherapist had to say "Um....your other left Colleen". Yah, being able to figure the difference between left and right apparently is a higher brain function. Then of course I let my dog outside this evening and not only did I forget about him for about half an hour but the only reason I clued in was because the back door was open and our two completely indoor cats were exploring the yard. Apparently closing the door is also a higher brain function. Watch out Mensa. Here I come.

So it might have been a better idea to take a nap rather than try to put something out onto the world wide web for everyone to ridicule for years to come but I really couldn't wait to give you the much anticipated first update on the genetic testing for Andrew. As some of you who have been following along will know my son Drew is undergoing testing for a rare form of Muscular Dystrophy called Becker (or BMD). Blood was drawn in February and we've been waiting ever since. Apparently splicing genes is hard or something. Sheesh. Although Drew is blissfully unaware of the concern at this point I will say that this has been hard on all of the adults in his life. His family, the school staff, and other friends have been anxiously waiting to get word. I would even hazard a guess that it's been hard on the poor lady who answers the phone at his neurologist's office. She probably recognizes my phone number on her call display by now. So when I called again a few days ago she excitedly said the results are back but the doctor hadn't even fully reviewed them yet. Then she asked me if I wanted her to read me the summary of the report. "Hell yah" is what popped into my head. I probably was a little bit more diplomatic and said something nice like "Yes please" but really I couldn't tell you what awesome choice of words I actually used since my brain is on vacation these days. She gave me the usual disclaimer "I am not a physician so I can in no way interpret these results for you....blah blah, blah".

Thankfully I have some experience reading medical genetics reports because of my job and so I probably had at least as good a chance at understanding some of the scientific lingo as any non-doctor could. Now I will point out that I've probably only read 6 or 7 of these in my day and they are always on my desk in front of me with my online medical dictionary and Google at the ready. I am not an expert in this field at all and I've never had to actually try to make sense of this kind of information over the phone. From what I could understand the lab did not find any duplications or deletions on Andrew's Dystrophin gene. Generally speaking that is extremely good news since the condition can be caused by at least 100 different "mistakes" on this particular gene. Depending on which error is made will determine the severity of the condition for the affected child. Not finding any defects is a great start. She went on to say something about the serum levels not being at critical levels. From my very limited knowledge of Becker Muscular Dystrophy the boys that have this diagnosis will have elevated levels of a particular serum in their blood. I can only assume that not being at critical levels is also a very good thing. I mean even the word "critical" doesn't sound very good in this context does it? Because I was anxious and had nothing but time.....like months of it.....I've gone and done what I always advise the parents I work with to try to avoid and that's to read a lot of medical articles on the internet that may or may not have updated or accurate information on them. Believe me when I say that this kept me sane over the last however many weeks. The problem is you just don't always know how much weight to place on what you've read.

I do recall reading somewhere that some boys with Becker's do not have an identified genetic marker and that just having elevated levels of this serum can cause problems in the muscle function. Not being at critical levels is good but that doesn't mean they aren't still elevated in some way. So what this means is that we are not out of the woods just yet. More like we've found a little clearing amongst the trees. I may still go to the appointment with the neurologist in June and have her tell me that he meets criteria for a diagnosis despite seemingly making it through genetic testing alright. Of course I hope that isn't the case but in thinking back to the initial appointment she did come to this as a conclusion rather quickly once she examined him and heard my concerns. It was like she was checking off boxes in her head. Of course I don't have a window into her thoughts that day but I will say she didn't check him for any other conditions. Just this one.

It's hard to describe the emotions I am feeling right now. A part of me wants to celebrate that we are one step closer....or at least that's how it feels.....to never having to worry about Muscular Dystrophy again. Then there is a cautious part of me that doesn't want to get my hopes up only to be crushed. The Muscular Dystrophy Association of Canada was one of the sources of info that stated only some boys with BMD will have a known genetic marker identified. Before I started into this process I innocently assumed that genetics was completely clear cut. In theory shouldn't they be able to tell you with certainty that you either have this condition or if you are really lucky you don't? Becker's Muscular Dystrophy is considered to be 100% due to genetics so I just assumed that we'd have a clear answer at the end of all of this. Maybe in 10 years science will be at the point that they can detect it in all patients but for now even the lack of critical serum levels or a failure to find wacky gene defects doesn't mean we have much more information than we did before. If anything the picture may have become less clear now.

And what if we find out that Drew does not fit into the BMD picture but they never really figure out what is going on with him? I imagine that sometimes not knowing would be worse than having an answer you don't really like. For now I have a bit of information to hold me over until we meet with our wonderful doctor in about 6 weeks. There is a potential end to this emotional marathon in sight.....but it may also be the first steps in a very long journey too. "One foot in front of the other Colleen".......

Puddle Jumpers

This weekend the kids and I headed on over to a popular natural area near our house. Specifically we went to the giant playground nestled into this space. It includes a water park but as we are just starting to emerge from a long cold winter the water park is far from ready to open. In fact most of the area was still covered in puddles from the freshly melted snow. Let's just say rubber boots were a better choice than bathing suits on this day. Still it was one of those days when we could shed our winter layers and just enjoy the sound of returning birds and the breeze through our hair.

When we pulled up there were plenty of other families already at the park but we managed to steal one of the 6 picnic benches in the area around the playground. I'm just saying that whoever designed a play space in a natural area with only 6 tables is an idiot. During the summer months you can't even find a place on the grass to spread open your blanket let alone a table because it's so busy. The hope of getting to sit anywhere but the burning hot pavement is squashed by the squad of "summer mothers". These women feel they are more entitled to a bench for their designer clothing clad children who won't sit down anyway and they'll claw your eyes out before they'd let you get the free table....even if you were there first. If you don't immediately recognize these women upon arriving at the park you just need to look for them hovering like vultures and sneering at anyone who dares join them in the hovering technique. It's usually not worth the fight. So you can imagine that I was surprised to find a table that I didn't need to risk my life to claim. I guess our favourite mommy friends are still in their pods waiting to hatch. I plopped down at the table and the kids took off towards the nearby equipment.

I cracked open my book and started to read. About 5 minutes in I looked up just to keep track of the kids. After searching through the crowd of about 40 or 50 other kids running and screaming as if they had been locked in cages all winter I noticed Andrew and Camryn just outside the fray. They were tromping happily through huge puddles and snow drifts left behind from Winter's clash with Spring so I went back to reading.


As the minutes turned into half an hour and then into an hour Drew and Cam continued to explore the puddles outside the main play space. Some of the time they were together in a kind of silent understanding of each others role in whatever game they were playing. Other times they were off completely alone starring at the water as it rippled in the breeze or when the tip of a twig pierced the surface. I sat there and observed them totally engaged in this activity. As I watched I realized that they were totally in their own worlds oblivious to the wild screams of the other children running around madly just 20 feet away. What they were doing was far more enticing to them than anything this playground equipment could offer. In fact I would even say that if every single child had picked up and gone home at that moment they would have continued their activities completely unaware the world outside their own little spaces.

A part of me revelled in watching them find so much entertainment in the simple act of starring at puddles. I'd be lying though if I didn't tell you that it also made me kind of sad. Here we were at this amazing playground and they could absolutely care less. The swings, slide, and dozens of other children were merely a backdrop to them. I've known for some time now that social interaction is difficult for them. Clearly with Andrew being diagnosed as having Autism and being pretty sure that we are heading that way with Camryn I don't know why this hit me harder than normal on that particular day. It was just a realization that we could indeed be completely alone in a crowd. All these other parents so blissfully unaware at what a miracle it is that their children love to be at the park and that they want to be with the other kids. I felt a bit angry at those other parents who don't have a clue how amazingly easy their kids have it. To just know what to do when you get to a busy park full of new friends. I sat and watched dozens of moms and dads follow their little ones around the playground helping them navigate the social world. Two little 4 year olds playing together as if there was no reason not to despite never having met each other before. Their parents standing watching as if this is so totally ordinary that they would never consider that it could ever be any different. Do they even appreciate what they are seeing? What their preschoolers do so automatically is very difficult for my 11 and 9 year olds.

It's not that Andrew and Camryn aren't amazing in their own right. Of course they are. And it wasn't that they were unhappy being completely removed from the social world of the playground because they weren't. In fact if they had been forced to be in the group we probably would have ended our two hour trip much sooner and inevitably someone would have been in tears at being totally overwhelmed. I do love and appreciate my kids for all their quirkiness. I wouldn't change them one bit. I was just a little bit sad at how lonely I felt at that moment.

Eventually Drew and Camryn walked over and asked to go home. I was happy to be free from this reminder at how very different our path is. It's not that it's a bad one, it's just different. To judge it compared to the so called typical path only makes it seem less than perfect when in fact it has it's own beautiful moments hidden in the journey. The trick now is to regroup and open myself up to all that it can become because in the end that is all it will ever need to be. There is beauty and wonder in being able to stare at a puddle for 2 hours and be completely content doing that. All you need is some rubber boots and a good attitude.

Autism: An old boys club?

I have always had an interest in child development. In fact I studied it at school. Okay well I studied psychology and in order to get my degree I had to learn about people in all age groups, every gender....and yes there are more than two.....wrap your head around that.....people from different cultures, and all kinds of mental health and medical conditions. In general I find the field fascinating to begin with. I love knowing what makes people who they are. I have an especially strong interest in children. I took every course on this subject that the University offered in my field and even a few that were in other fields.

So it might be fair to say that I've read quite a bit about child development in general and now that I am a parent and professional working with kids on the Autism spectrum I have also read a lot on this topic as well. For those of you that are new to this field or generally don't have a lot of background in Autism I will say that far more boys get diagnosed with Autism than girls. Current statistics usually state that it's a 4:1 ratio although I've also seen 5:1 and 6:1 listed in the literature. That's a pretty big difference when you think about it. There are a few schools of thought on the reasons for this. Some believe that boys just have it more often pure and simple. Others argue that the girls are out there but they're getting missed. The new thought is that they often present differently than boys and while it may be clear that there is something going on with their development that many are not properly diagnosed. Basically only girls that present closely enough with the "boy" criteria are getting picked up. This is interesting just by itself because Autism is a spectrum disorder. Everyone already accepts that there is a range of presentations yet when it comes to taking gender into account people have had their heads in the sand.

I certainly can see both sides. My clinic has far more boys referred for Autism assessments so I could argue that of course boys have it more often. However it is very possible that the girls never make it to us in the first place. Maybe they are getting screened out earlier in the process and never get considered for a diagnosis like their male counterparts. Unlike most parents of a child on the spectrum I also have the added experience of seeing literally hundreds of kids over the years as part of my professional practice. Interestingly I was in this field before I ever had Andrew and Camryn. Thankfully when I heard the word Autism I already had my feet on the ground in this ring. It still hit me like a ton of bricks but at least when I stood back up I kind of knew where I was and which direction to head. Part of my professional practice now is helping other parents find their way through those first few weeks. I will say that this is a highly rewarding career and is even more so now that I've made tracks on this path myself.

So sometime ago I started noticing that almost every book I read about Autism was about boys. Intellectually this makes sense. If the majority of your diagnosed subjects are male then why wouldn't you write about them. However there is that nagging little problem of this theory that the girls are actually out there in greater numbers than first thought. These girls are not yet diagnosed and in many places this can mean a delay in treatment too. Parents and professionals reading these books that only talk about how most boys present and say nothing about the differences you might see in girls may get the wrong impression that these little girls aren't on the spectrum after all. I mean stop for a second and think of the implications of this. How many little girls don't get any treatment at all? They may spend their whole lives not understanding why they struggle with friendships and in other social settings. They may have a hard time in relationships, in the workplace, and what about self esteem? Their parents may wonder what is going on and how can they even begin to help their daughters if they don't know what is wrong. The girls deserve just as much chance to reach their potential as the boys.

One of the things I've learned recently is that girls on the spectrum sometimes appear more socially motivated than their male counterparts. If you just stop and think about it doesn't this make sense? I mean just in terms of your average sample of girls versus boys does this not usually occur? I don't think this is an Autism thing....I think it's just a girl/boy thing. It's kind of like one of those light bulb moments that years from now will seem so clearly obvious we won't believe that people ever were so ignorant to think it was ever any different. Of course many of these girls want to be in the social group. Duh? The difference that comes with the Autism is how hard it can be for them to reach that goal. I look at Camryn who desperately wants to be part of the group of little girls in her class. I will point out that she has not been diagnosed yet although I am pretty sure we are going down that road. We start assessments next month and so pretty soon I'll be able to stop putting these disclaimers in my blog postings. She'll either have it or she won't. It doesn't change the fact though that Camryn desperately wants friends. She wants someone to play with and tell secrets to. Up until now she's had a fairly stable group of girls that she hangs out with. However she is in that dreaded grade 3 year where the social world changes. I have noticed this with both my kids. About halfway through the grade 3 year friendships move from being general to being more specific. Children are starting to chose best friends. Sure some of them have been best friends for a year or two but those friendships are often looser and more open to triads or even bigger groups. As we finish up the month of April I am seeing that the other kids are starting to pull away from Camryn a little. It's not that the girls are being mean. They really aren't. But Camryn still wants to play animals and they are into other things. I know they would let her come along and join in but she is also choosing to be left behind because she can't let her interest in animals and monsters go. So she often ends up alone. As her parent I see this happening but there isn't much I can do about it. It's not fair to ask the other girls to play animals just because Camryn wants to. The truth of the matter is that these girls have been wonderfully accepting of Cam's animal play for 2 years now. When they played house in grade 1 they let her be the family dog. In grade 2 when they were playing Bratz and fairies they let her be a variety of animal friends. Really they have been more than tolerant of her interest area. But in the world of Justin Bieber and Kesha there just aren't any animal roles to fill. Reality is sneaking up to Camryn and it's about to slap her silly. My heart aches for her.

Then there is her crying at school. Camryn cries several times a day about things that most kids wouldn't even notice or care about. The other little girls often rush over to her to try to comfort her and help but that is the last thing Camryn wants. There is an element of being completely overwhelmed by the sensory world and so when she cries at school she is just done and needs to be left alone. With all the little girls rushing over asking her what's wrong she only gets more chaotic. They are trying to be loving and sweet which warms my heart. I really can't blame them for caring so much. Her refusal to be comforted is actually pushing the other girls away. I mean how good does it feel to try to help someone who won't look at you, who won't talk to you, and who doesn't feel any better for having had you there? So slowly but surely Camryn is getting herself moved out of the social world she wants to be a part of. These are issues that the little boys aren't usually dealing with in grade 3. It's just different. Autism or not.

I know some kids don't fit neatly into this "girl/boy" package but I think as a general rule girls on the spectrum have been lost in the literature for years. Luckily this corner of the Autism world is just starting to be explored. I think this is a very good thing. Hopefully more girls will be identified and treated early so that they aren't left behind in a cloud of dust that is the grade 3 social world. Watch out boys....here they come!!

Okay who invited the undead to the party?

Tonight was a big night in our house. Both kids mastered tying shoes....okay well maybe "mastered" is the wrong word. They both now know all the steps and can tie their own shoes more or less. It wasn't always pretty at the end but they did it. It was actually a really big deal and we even called Grandma and Grandpa to brag. I mean who wouldn't? For my kids this was huge.....and the fact that I taught them both at the same time.....side by side.....and didn't completely lose my mind was also worth celebrating. Yeah sanity!!

We also watched a movie. I cooked a dinner from scratch that both kids ate....I mean licked the plate clean. And our big finale? Me reading 2 chapters from a novel to them for bed. Could today have gone any better? Okay well I completely forgot about my dog at my parents house. Then when my Mom called to gently remind me that it was 5 o'clock and he was still there I was on the phone with the district manager of my favourite shoe store. If you missed my last post "Back away from the shoes lady" you may want to break here and read it so you'll know what the heck I'm even talking about. Anyway, it turns out that the guy who suggested that parents who waited to teach their kids to tie shoes were kind of lazy (as I was buying shoes to teach my kids to tie their laces) was indeed the store manager. Awesome. And if you think that is interesting you might be equally intrigued to find out that Ms. Wag her finger in my face lady was the Assistant Manager. Double Awesome. At least the Manager was trying to be friendly in a misguided way. I can forgive the ignorance because I think he was genuinely unaware that he had insulted me. However for the assistant manager to be the finger wagger was a bit of a shock. I mean how bad do you have to be at your job to NOT be promoted in this store?

Anyway, so I forgot my dog but otherwise everything else went so seamlessly you could forgive me for becoming complacent that tonight was going to be easy. I mean the kids even remembered to brush their teeth without being reminded. That has never happened at my house in the history of time. Oh sure they always remember when they are sleeping over at Grandma and Grandpas but at home....never.....ever have they both remembered by themselves. After stories the kids willingly went to their rooms and as is our usual routine I spent a few minutes with each one to tuck them in. Andrew had been first in bed tonight because he is trying out his new sleeping bag. He has a class trip in a few weeks and I thought I should get him used to as many things that he will have on this trip as possible so that it's not one big horrible transition for him. He hates changes and sleeping in a new sleeping bag, in a new place, with a new portable sized pillow, in the dark with no nightlight, with his classmates and not his cat, and me being a full hours drive away could be a bit of an adjustment. So I thought I'd be smart and bring out the sleeping bag now. Drew had rushed into his room and climbed in. Camryn was giggling hysterically in her room about some scene from the movie How to Train Your Dragon and repeating the punch line of the joke over and over laughing even louder and longer each time.....I decided to give her a few minutes and headed into Andrew's room first. I zipped up his sleeping bag and tucked him in. Then I headed in to corral Camryn who had now become Nightfury who is one of the dragons from the movie. Of course Camryn no longer talked because of course dragons don't talk and she was pouncing and bouncing about her room. As I came in she leaped from the closet onto her bed and started to nuzzle my arm. It took a few minutes to get her settled. I've become rather skilled at putting a variety of animals to bed. Maybe one of these days she'll be a human again and I'll get to tuck Camryn in. Oh to dream.

So usually after tucking in the second child...or in this case one child and then an animal I usually do a quick peak in on the first child to blow them a kiss. When I did this I could see Andrew looking rather upset. I went over to his bed and asked him what was wrong. Typically he gets upset if I spend more time in his sister's room then I did in his. Since it had taken awhile to tame my dragon....good pun right? Sorry I couldn't resist. I figured this was what had upset Drew. However he said "I'm worried about zombie attacks because all my other visions have come true lately". He went on to say that he had a vision that he would get a sleeping bag right before a zombie attack. Okay, kind of random. And here I just gave him a new sleeping bag. What a nice Mom. I just set into motion a full scale attack of the undead on my own kid. Aren't I Mother of the Year!! I will say that Andrew does tend to be dramatic at times. It's kind of his way of engaging people and it's his own quirky thing so I wasn't sure if this was an attempt to get a bit more attention or if he was really scarred. Despite the drama he does tend to have some real fears about seemingly impossible things. There have been times when he needed to have a fan blowing on his face at night to protect him from aliens, and he's had to have his bed positioned a certain way in the room to protect him from the vortex that is apparently in his floor, and then there were the venetian blinds that had to touch the window pane so that ghosts wouldn't come into his room. I could have told him that they would probably just go through the wall instead and avoid the window panes altogether but I didn't want to have to pay for years of therapy sessions so I kept my mouth shut.

So how do you convince an 11 year old that a zombie attack tonight is somewhat unlikely despite me giving him a sleeping bag? He knows that there is no such thing as zombies and I'm pretty sure that it would be a bad idea to come up with a "zombie spray" at this point because then he'd know I was full of crap about zombies not being real. I mean who would invent a spray unless they were actually real? So no spray for us. It took me an extra 30 minutes to get him calmed down and tucked into bed but I'm sure he'll be awake for an hour or two as he waits for the undead to rise from the yard and come looking for him. As I was leaving the room Andrew said "Did you ever get scarred of monsters in the olden days Mom?" I had to think for a moment because after all I'm apparently so ancient that to think way back to the olden days takes awhile. "Yes honey a long time ago" I said. I wanted to be reassuring. "I'm not afraid of zombies or monsters anymore" I continued. But as I left the room I thought "Mom's just scarred of crazy shoe store ladies honey". I wonder if anyone has a spray for that?

"Back away from the shoes lady"

Today I decided to teach the kids to tie shoe laces. Okay well truthfully Camryn's grade 3 teacher has been sending notes home to do it. I think all the parents are getting nagged and it's not just me. I would like to start by saying Camryn has slip on running shoes at school so I'm not sure what the urgency is but by about the 36th day in a row it was getting old....really old. I had a uniform that included lace up dress shoes when I went to school so I knew how to tie them in grade 1. Not that it wasn't torture for my mom to have to teach me at that age....'cause it sounds like it was. Sorry Mom. To be honest Camryn has been ready for a few years but it wasn't just laziness on my part. I considered teaching her. However Andrew hasn't been ready because of his motor delays. I'm not sure if he's even ready now but with Camryn's teacher insisting on it I don't know if I can put it off any longer. It really seems to bother him when she surpasses him in anything. So far I've been able to stall Cam on a few things. One of them was learning to ride a bike until she expressed a real interest last summer. Before that she didn't ask and I didn't encourage it either. Luckily Drew was finally ready when she was and he was also motivated to do it if his sister could. So in a few tear filled sessions he learned along with Camryn. Then about two weeks into summer he fell off his bike and got some serious road rash. I was pretty sure that would end his willingness to ride a bike but he pushed through. I was so impressed.

We've also had to "accidentally" register Camryn in lower levels of swimming just so that Andrew wouldn't get passed by his little sister. So far she hasn't noticed which is a miracle because remembering numbers such as the swimming level she's in seems to be a talent of hers. Thank you AD/HD. She's now only one level below him so not sure what I'll do if she passes and he doesn't. As is my usual strategy I will wait to cross that bridge when I come to it. So far this has worked out for me. However I'm not so sure if my lucky streak will continue with the shoe laces.

So today was the day that I broke down and bought both kids cool new shoes with laces. Yes I am crazy for attempting new things when we have so many stressors but I never claimed to be sane or smart. Okay well I probably have claimed to be both of those but for the purpose of this blog let's say I haven't. I show up at a large store here called the Shoe Warehouse that often has the brands other kids would want....although neither of my kids has a clue about that sort of thing anyway. I'm looking at shoes when one of the staff walks by and asks if I'm finding everything okay. "Well actually I'm having trouble finding the correct size" I say. No response. I look up to find the lady who asked just walking right on by. (You may want to remember her. She'll become important later in my story.) Wow I think that's awesome customer service. Kind of a don't give a rats butt about you kind of attitude. Did I mention how much I love shopping to begin with? So I pick out two pairs by myself and head to the cash register. The lady behind the counter is on the phone and remained so for the duration of my purchase. I must say I'm sooo impressed by this especially because I want to ask about returns and exchanges but of course can't because that would be rude to interrupt her conversation. Then a male employee walks up. He asks if these shoes are for my kids. I guess I should have just been impressed that I was getting some personal service. However with my already stellar mood from my previous 20 minutes here it was everything I had not to reply with "no the bedazzled Sketchers with rainbows and flashing lights are totally for me. I might wear them to work". I was proud of myself that I actually held my tongue. Then he continues with "it's nice to see a parent who buys lace up shoes for a change". Go on I think to myself. He says "I can't believe how many parents leave it until grade 3 or 4 to teach their kids to tie laces". I figure at this point I'm just going to sit back and let this guy continue to put his foot in his mouth since Andrew doesn't yet have this skill at 11. It's sort of my favourite past time to watch people do stupid things. Just as I'm finished my purchase with the apathetic woman on the phone I say "I guess it's good that I'm finally getting around to teaching my son in grade 6 then. Have a great day". As I'm walking out I think to myself "Hope you aren't choking on your foot for too long". With that I took MY awesome new Sketchers and left.

Of course given my luck Camryn's shoes were too big....I mean.....my new Sketchers were too big for Camryn and she was totally jealous that I got some for myself and stuff so I headed back to the store today to buy a pair the next size down. Fully expecting to see Mr. Shoe Lace guy again when I went inside. I guess he took the day off. Hope it wasn't anything I said. Now I'm feeling really bad. Truthfully it was probably just his day off because he's so lucky to have to work weekends that they give him every second Thursday off as a perk. Woohoo. Livin' the life!! So I'm in the store and find the shoes I want. They are in a shoe box up on the shelf. Now I've worked in retail and I know that stores kind of hate when you reach for things. All they can see is my mangled corpse laying under 4 boxes of kid's shoes.....after all 4 boxes is actually 8 runners in total. That's seriously dangerous stuff ya'll. Especially Sketchers. Deadly!!

So I try to be a good customer by looking for a clerk to retrieve this box of shoes that is totally within my reach. Not a soul in the store. Apparently the previous happy crowd who worked here now doesn't even want to be seen so they have found a way to blend into the racks of shoes. It's shoe stealth mode. I was in a bit of a hurry so I lifted my arm up towards the box. Now that I have apparently committed the ultimate sin against the store my good friend "walking right past yah" lady springs into action. Just as my hand brushes the side of the box I hear "Ma'am.......NO!!" It was said in a tone that I would probably use if I had come home to find my couch ripped to shreds and my dog sitting there with foam hanging out of his mouth. You could easily imagine that instead of "Ma'am....NO" this lady was saying "Augie! NO! Bad dog....very bad dog". Of course I didn't eat the couch I just reached for some shoes. I look up to where this stern voice is coming from and see a noticeably pregnant store clerk walking towards me. And what is she doing? She's got her hand on her hip and is wagging her finger at me". As she does she says "No. No. No. You do NOT touch the shoes". Now you might assume that I had pooped on the floor for fun and done a naked dance around it the way she was talking to me. For the record I didn't.....but now that I have the chance to think about it I kind of wish I had just for the shock value. Okay, I'm not that type of person but I can dream about it can't I? So I just looked in horror and disgust at her. I told her that she could take her finger out of my face immediately. Now I will say there are at least 100 things I could have.....and probably should have said to her that she would totally have deserved. While I was now grouchy with her I refrained from slapping her....one of my first thoughts.....and maybe still my favourite. I didn't swear at her or raise my voice. I didn't insult her or even storm out. However apparently telling her to stop finger wagging at me was crossing the line in her books. She abruptly told me that I did not have to be rude to her and that abuse of employees will not be tolerated. Are you kidding me lady? Am I on Candid Camera? Me abusing her? In what universe am I being abusive? I just want to buy some shoes.

I tell her that if they want to make the sale then she would be well advised to get the shoes off the shelf or I'm walking out. So she hauls out the ladder in all her pregnant wonder and steps up to the first rung which is only about 6 inches off the ground and pulls the box out of the pile. The top box of shoes goes tumbling to the ground. I guess her fancy method of safely removing shoes from the pile is so amazing after all. Good thing none of the shoes fell over and put anyone at risk. Oh wait......yah super safe. Great work!! I refrain from kicking the ladder out from under her....but only for that poor baby she's cooking in her "oven" of rage. It's going to have a hard enough life with a mother like her. Can you imagine when that baby reaches for a toy she'll probably smack it and tell it to stop abusing her. I make my purchase and walk out NEVER to return to that location of the Shoe Warehouse again. I know I shouldn't be too hard on them. After all they have to deal with people trying to buy shoes ALL day long. I mean.....how can they be expected to put up with that crap? That's just not fair. In fact it's downright cruel.

So let's say it together. "We do NOT touch the shoes".

Crying over spilled moo juice

Our weekday morning routine has been pretty much the same for the last few years. I wake up about an hour before the kids and spend that whole time hoping that they will stay asleep as long as possible. This is because I need time to wake up and have my brain up to full power before I have to be on my toes. It's not that they are nearly as challenging as they once were but even at 11 and 9 I still have to help them with parts of the morning activities. For instance I have to pay attention to what Andrew picks out for school. He often is completely unaware of the seasons and will put on shorts in the winter or not bother with socks if there are no clean pairs in his drawer. There have even been times in recent months when he started putting on his coat and boots for school while still in his PJ's. Needless to say it's kind of important for me to be truly awake in the mornings.

So after the kids get up the only important thing they need to do before we leave is get dressed in something that won't get social services called on me. I set my goals so high don't I? Who cares about fashion. Lets' just stay in Moms custody today okay? Then we head off to Grandma and Grandpa's house for breakfast. Even on the days when I'm not working we still usually keep this routine. Kids with Autism tend not to do so well with an abundance of variation in their lives which means that their parents also don't do well with lots of variation. In a nut shell it makes our lives easier to just keep it the same and avoid the trigger being pulled on the entire day. The usual breakfast consists of cereal and a glass of whatever flavour of milk they will possibly drink that day. Currently Camryn wants a different flavour every day which means you actually have to know what she drank yesterday. "Hello!! Brain not fully firing at 8:00am". Andrew never wants anything different. It should always be a combo of chocolate and strawberry flavour. That is until one day after you've poured it and he'll announce that this is no longer the kind he likes. Oh and he needs it in a green cup and Camryn needs hers in a blue one. Please be sure never to mix those up in your morning fogginess. Been there, done that, and it's not pretty. Oh so much crying.....and not just the kids. We have recently worked at getting them to accept.....dare I say....non-blue and non-green glass cups. Small victories!! However this is challenging because glass can shatter and the kids sometimes are preoccupied by being able to see the syrup that sometimes remains at the bottom of the cup. Something they couldn't do with colored plastic ones. They'll just sit their watching it as if suddenly it might do something interesting. Spoiler Alert!! It never does.

Another reason to switch from the colored plastic cups was because they had a tendency to tip over. Okay, well they didn't really have that tendency but my children are busy and don't always know where their limbs are in space. This was leading to a cup being dumped over a little bit too often. At least the glass ones are a bit heavier but it's still in theory could be knocked over by an arm wildly flung across the table. When this occurs my Mom and I jump up to deal with the mess. Camryn is usually a bit anxious and sometimes flaps just a little as the milk finds it's way close to her but otherwise she just sits there watching. While she doesn't always help it's clear that she is fully aware that milk has been dumped. However Andrew who is usually the kid that knocked it over continues to eat his cereal and chat about random stuff as if Grandma and I weren't madly flying around the kitchen gathering paper towels and dish clothes as the milk spreads across the table and ruins just about everything it touches. As it begins to spill off the edge and drip through the cracks in the table the dogs gets involved. All the while Andrew is completely oblivious to the ensuing chaos around him and never makes any attempt to help clean up.

So you can imagine my surprise today when the kids were sitting here eating breakfast. It's the weekend so we were at home. I was running around getting us ready to go out for the morning when I hear the familiar thump of a cereal bowl on the table. I assume your everyday, run of the mill parents would hardly even notice this sound but like a meerkat I stop what I'm doing and stand at attention waiting for anything that indicates danger. I hold my breath for what seems like an eternity. Usually I can hear Camryn's tone change to indicate that she is getting excited but it's not voices I hear. I was downstairs at this point and heard what sounded like the kids running around on the main floor. We have hardwood floors so it sounds roughly like linebackers practicing in our living room. I come upstairs not sure what I will find.

There to my amazement is Andrew down on the ground passing paper towels to Camryn as they try to clean up the mess. It turns out that Camryn had tipped her cereal bowl and some milk had sloshed out. Here is the miraculous part. Wait for it.......Andrew not only noticed for the first time but he actually did something about it. At this point I swear I hear harps playing in the background while a choir of angels sings Hallelujah. Of course the kids really have never done this alone before and are actually just kind of smearing milk and cheerios around on the hardwood but they are trying. I will say that I was so excited that I could have actually cried. I'm not fooling myself to think that we will have less spills anytime in the foreseeable future. And I certainly think it could get harder to clean up after the kids "help" but I won't pass on this monumental step forward for Drew. And the very best part....seeing how proud he was when I gave him a high five for helping his sister. I'm sure Camryn would have joined in if her feet hadn't been stuck to the sticky mess on the hardwood floor.

Holy swag Batman!!



Cam looking way too typical for a special needs event.

 Last year by chance I happened to be chatting with a colleague of mine who works for an Autism group here in the city. She had met both my kids and although at the time neither was diagnosed with Autism she felt strongly that we were probably walking down that path. She just so happened to have been given some guest passes to an event held by the Calgary Exhibition and Stampede called Aggie Days. This causes a lot of confusion in our house because we have a dog named Augie ("Og-ee"). I can't tell you how many times I've ticked my kids off by calling it Augie Days...."Hello rigid children".....but that's another story. For those of you that do not live in Calgary you may have heard of the Calgary Stampede and assumed that this was a once a year event. While that is true the people who put on the Stampede also do a lot of other activities during the year. One of them is Aggie Days. It's part giant petting zoo and part convention but with a kid and family focus. Basically anything even remotely related to agriculture can be in this event. So I was handed these tickets to Aggie Days last year and since Camryn loves animals so much I figured we'd give it a shot.

Now I will say that Aggie Days is open to the general public too but we were invited to a special early entrance for kids with special needs. It's not quite like getting into Disneyland early but for us it's close. Because Camryn tends to get easily overwhelmed by crowds this was appealing. Between my two kids we've had to walk out of the Stampede, multiple movies, a Raffi concert, the Children's Festival (twice), and countless other things all due to one of them being completely "done" sensory wise. I was happy to be able to go at a time of day when Camryn was still likely to be functioning and with other families who won't assume I'm the worst parent on the planet because my 9 year old typical looking daughter starts crying.

Despite being there with other special needs families I always have a bit of a knot in my stomach at any new event. There is no way to predict whether we will have a great time or whether I will be sitting on the floor in the middle of a busy walkway with a sobbing child while people flash me dirty looks. So with a bit of trepidation we attended this special event. Camryn enjoyed herself so much that I figured this would have to be an event we did again. About 2 months ago we got an invitation to come back. Woohoo.


Cam with her free breakfast she would only poke with a fork. Apparently putting the sausage between the pancakes makes it "not good" anymore.

So today was the big day. Aggie Days part deux. Camryn was so excited that she could hardly contain herself as we drove to the Stampede grounds at 7:00am. I am certainly grateful that we get to attend this event but I could have done without waking up at 6 on a Saturday. However just watching Camryn's face light up this morning when she realized what day it was made it worth while. We found our way into the building and were greeted by a team of staff and volunteers who made it their mission to give us a great day. Their patience was endless as they asked each and every kid what their name was. Now I will say that there were children in wheelchairs, some tethered to service animals, some who were non-verbal and used communication devices, and many who nobody would pick out of a crowd....like Camryn....well unless they were in a big crowd that caused a meltdown that is. Each child got their very own personalized name tag on a bright green lanyard and a bag full of goodies before we even entered the event. I had gotten smart from last year and brought a backpack. Camryn had gotten smart and brought her hat with a brim to block out the bright lights. Aren't we the professional Aggie Day-ers?

By far Camryn's favourite part is the live animals. They have horses, cows, newly hatched chicks, pigs, sheep dogs, rabbits, and goats. Amazingly there is very little "barn" smell which suits me just fine. Last year the animals were just about the only thing Camryn would even look at. In fact I think we spent more than half our time with her sitting in the hay as the baby goats climbed all over her while she giggled maniacally. This year she certainly still preferred the animals but actually spent time at interactive booths on bugs, crops, water, and recycling. She even asked one of the presenters a question about a non-animal topic. I just about fell over on the concrete floor in surprise.

Doing a non-animal activity.

I can't say enough about the group that puts this event on. They are so lovely to the kids. It's nice to have people that will get up even earlier than we did and many of them doing it for free. Camryn can handle life way better than she once could but that doesn't mean we don't still face our challenges. It's nice to have a place that "normal" families would actually go and I don't need to worry when my kid is flapping her hands or getting overwhelmed. The only tearful moment today was when the science lady gave her a green pencil when there was a bin full of blue ones just sitting there.....Seriously lady just give her the damn blue pencil would you? We don't care that the green ones change color. Baby steps.

All in all it was a great day. We got more swag than I ever expected and we had a blast. Camryn got to indulge in a passion of hers and I got to feel like we were a family that doesn't worry about meltdowns, hand flapping, picky eating, or even crying over the blue pencils left behind. Yeehaw!!



Some of the swag we walked away with.



The fun never ends



Here I am 4 months and 5 days after my so called "minor" car accident and I'm still learning just how screwed up I am. The other day I had the pleasure of going for a vestibular assessment. I bet most of you are like "vest-i-bule" what? In a nut shell the vestibular system is what helps you keep your balance and lets you know where you are in space. I have had ongoing issues when I turn my head, roll over in bed, and bend over to pick stuff up. Heck I even get dizzy just sitting there. I can't tell you how many walls I've walked into or how many times I've tipped sideways crashing into things. It's like being drunk without the fun part. Okay, I will admit sometimes it is kind of funny. Seriously how can you not laugh at yourself for walking into a wall?.....I mean after the swearing part.

So I started a list of things that make me look foolish and walking into walls is number one on the list. Of course there have been a few others too. I'd be lying if I said that I haven't done lots of things in the last few months to look really stupid. If you are sitting there saying "I'm sure that's not true Colleen" then clearly you haven't been reading my blog. So my list has become rather extensive. And apparently after the assessment I can add standing on one foot with my arms at my sides and having my eyes closed as I tip sideways into the wall to this list of stuff. I can't say I would have discovered this activitiy on my own. They tested me doing all kinds of really common things. You know how late at night when you just feel like standing in a dark room on one foot and stuff. Well I'm no longer good at that. Who knew? Not sure what I will do the next time that comes up in real life. I'll have a bunch of friends over and be like "Hey guys, wanna stand on one foot in the dark? Oh wait I can't. Never mind!" Sigh.

I will say that this assessment was far nicer than the eye exams and head scans I've already gone through in the last few months....mostly because nobody was doing crap to my eyeballs or giving me brain cancer. There is a lot to be said for assessments that avoid those things. I give them two thumbs up!! With this one I pretty much got to be in a room where the only people under the age of 87 were the therapist and I. Apparently the only people in worse shape than me are those who are completely surprised to wake up each morning. Great!!

The assessment consisted of there therapist laying me down, sitting me up, turning my head, having me stand on this foot and then that foot, having me walk across the room and then again 14 more times, and looking at a playing card while I shook my head back and forth. Phew. Even I can pass that test. I'm pretty sure I aced it. Then there were these bizarre goggles that she had me put on. They block out all light and have a camera to watch your eye movement in complete darkness. So there I am looking like Darth Vader's love child unable to see anything and she tells me to look straight ahead. "I am looking straight ahead" I say. "No you're looking down" she responds. I'm thinking how the heck am I supposed to know where I'm looking? It's pitch black and there's nothing to look at. At this point I imagine that I'm probably the most entertaining thing all my new geriatric friends have seen all week. I swear I hear them snicker because my hearing has now become more accute with losing my vision and all. "I'll get you Maybelle if it's the last thing I do". Maybe this is like the movie Dinner for Schmucks. They've invited me here in some sort of loser contest for their own perverted amusement. Awesome. I'm a schmuck. At least I don't dress up dead rodents.....yet!!

Finally I take the super cool goggles off and feel such disappointment that I don't get to keep them. Sigh. The therapist advises me that I do indeed have inner ear dysfunction. She goes on to explain that during my accident my brain would have gone forward and then back causing my concussion. However because my head was turned to the side at the time my brain likely would have come back and squashed my inner ear giving it a concussion of sorts too. Wonderful I think to myself. Now I'm a freak of nature with an ear concussion. I'm such a weirdo. I'm so glad that there is now proof of this. I bet all of you really want to hang out with me now. Sigh. If anybody needs me I'll be in my room standing on one foot in the dark and stuff.

And then there were two...



Born wild....nature girl at heart



Andrew was such an easy baby and toddler in so many ways. I could put him down with a pile of board books while I ran to the kitchen to stir whatever was in the pot for dinner, go tuck some clean laundry into dresser drawers in the bedroom, or brush my teeth knowing that he would probably still be in the exact same spot when I came back. It wasn't that he didn't like to explore but he was just so easy going that I could leave him somewhere baby proofed and know he'd be fine. Sure he might pull a few of his books off the shelf but he was happy. He was so easy in fact that I was lulled into thinking we were somehow super parents who could handle a second child no problem. I mean how much harder could a second baby be? Famous last words right?

Camryn was an alert and feisty baby right from the start. Looking back I'd have to say that she was probably happiest in her swing, swaddled up with her hands touching her face. We learned very quickly not to wrap her with her arms down. Oh no. If you did she'd let you know how very unhappy it made her. She was very fair when she was born so the screaming turned her to a shade of red that was almost unreal. There was no doubt how she was feeling at any given moment and she wasn't afraid to express herself.

She was the baby that was harder to sooth, harder to amuse, and harder to get to sleep. I knew it wasn't anything like colic but she was just more prickly. Her dad even developed a special walk to get her to sleep which we later named "the Raptor" because we had to walk in a bobbing motion while up on our toes as if you were looking for prey. If you saw the movie Jurassic Park with the small raptors that hunted the kids in the kitchen....yah, that was just like what we had to do. Sounds soothing right? But it worked. Despite this everything else in those first few months was wonderful. It wasn't until around the age of four months that I noticed anything out of the ordinary with her. Sure she had fire in her belly but she was fitting into the family perfectly. Then one day while out for a walk with my Mom, Camryn didn't react to a dog suddenly going crazy on the other side of the fence only a few feet away. It was enough to startle the others in the group but Camryn didn't even flinch. Maybe she has trouble hearing we thought. Of course I wasn't convinced. I was sure that she had responded to my voice before. So I waited until later in the day when she was playing and I came up behind her and called her name. She didn't notice. I called again, this time a little bit louder. There she sat playing. I got about a foot behind her still thinking this time she'll turn. I suddenly clapped my hands as loudly as I could but she just sat there facing the other way completely unaware of me slapping my hands together as if everything depended upon getting a reaction. Could it be true....was she deaf? I called the pediatrician and took the first appointment they would give me.

"I'm sure it's nothing" I was told. Oh, years later if only I had trade marked that phrase. I will say those have to be my favourite words ever. Kind of a nice way of saying "I think you're crazy so I'm pretending you aren't really there". The pediatrician did book us for a hearing assessment but as I was leaving the office he said  "Give it some time she'll be fine". When we got in two agonizing months later sure enough her hearing was just fine. It didn't make any sense. Maybe I was just an over anxious mother after all. Then within a few months I realized that the babbling Camryn had started recently was now almost gone. Back to the pediatrician and once again I was told "Don't worry Mom. Give it time". So that's what I did. For several months I watched as my baby stopped making all sounds except for the odd laugh, a weird growling noise, and crying. For those of you following along you can probably guess what happened next. Pediatrician. Check. "Don't worry". Check. Go home and wait. Um....nope. Not this time. I hired a private speech pathologist to see Camryn. Sure enough even at 11 months she had a severe speech delay because she wasn't babbling or cooing at all. Took that report to the pediatrician and finally I was taken seriously. Apparently I needed a professional to say she's not babbling because I'm pretty sure I said those exact same words and was told it wasn't a problem. Look at me being so smart. I could be in child development....oh wait....I am. Hmmm. Super.

A few more months after that two major things started. First Camryn began speech therapy. She also started have tantrums. Now you may be thinking "so what's the big deal, all kids have tantrums". While that is true even the word tantrum doesn't fully describe these outbursts. These were all out screaming fests where Camryn couldn't be touched, you couldn't really look at her or she'd scream more and if you moved she'd start hurting herself. All I could do was sit by and ride the wave with her. "Now what could possibly set an 18 month old off like this?" you ask. The answer.....anything....everything....and sometimes even nothing!! At about that time we went on a family vacation to Disneyland. Worst week of my life!! The crying, biting, pulling her own hair out, and oh so much screaming. I vowed then and there to never go on vacation with her ever again. Yah, never believe what I say in the heat of the moment....we've gone to Disney two more times since then. Apparently I kept forgetting how much fun travelling with her could be. Despite these massive tantrums I could tell in my heart that she wasn't just a spoiled brat. There was really something terrifying for her. Call it mothers instinct but I could see the fear in her eyes when she got like this. It was as if she was a tornado spinning out of control and nobody was more afraid about that then she was. It didn't make her any easier to deal with but I could sense that she wasn't just doing it to get her own way. I learned patience as I sat with her hour after hour. It's not like I could do anything but sit and watch her when she got this upset. As always the pediatrician assured me that the tantrums couldn't really be as bad as I described and she'd grow out of them as all children do. Of course she usually behaved beautifully in the doctor's office. That was awesome. Now I look crazy.

When she finally had one of these epic tantrums during a speech therapy appointment the therapist politely asked if she could be referred to their psychologist for a consult. I think it was the hiding under the table unable to be touched or looked at that kind of freaked the speech pathologist out. "Does she do this often?" she asked. "Everyday" I replied. Finally it felt like someone was going to help. But then in just one appointment with the psychologist I got those familiar words once again. "Give it time she's fine" was all the support I got for that. Fantastic. So for the next year and a half we endured tantrums that lasted as long as an hour sometimes 2 or 3 times a day. You couldn't leave her because she might harm herself if you did. I didn't get the sense that she intended to hurt herself but just that she was so out of control and didn't know how to stay safe. And there we sat day after day as she screamed herself completely out. Tantrums usually ended only because she would collapse into a couple hour nap from being totally exhausted. It wore me out just watching her. You'd think we'd get some help at that point right? Wrong. "She's just strong willed" one expert would say. "You need to be tougher and not give in" the next would tell me. I even had a parenting coach come in because by this point I was convinced that I was screwing this up totally. I mean, Andrew had been such an easy child. I couldn't understand how I could mess this up so bad when my other kid was happy. After all I had been told time and again there was nothing wrong with her.....it must be something I was doing or not doing.

The truth of it was I was sad for Camryn. She seemed to be so unhappy at times. Then there was the exhaustion. When she was screaming I couldn't get anything else done which meant I had to do everything after she fell asleep. Now that was another challenge. It sometimes took 2 or 3 hours to get her to bed at night. I had been a single parent for some time by this point and to be honest most of those years are a bit of a blur. Nobody in the house slept much and it felt like my world was in shambles. When she was about 4 and a half I brought in a second parenting expert to help coach me and she told me that from what she could see I was doing everything right. Of course she saw us at home and Camryn stayed calm during every one of her first 6 visits. The little turkey. So I suggested that we try an outing with our parenting coach. I had had an awesome visit to IKEA with Camryn 2 weeks previous....and by awesome I mean in the way that jabbing toothpicks into you eyes would be awesome. So the next week this poor lady met us at IKEA for what would become an memorable adventure. I had Andrew in tow as well. Things started out okay. We got past the kids play area without too much of an issue. Through most of the top floor and then came the children's section with all it's whimsical furniture and bins full of toys.....including the stuffed animals. I knew this could be our big moment. After all this had been our break down spot 3 weeks earlier so I held my breath as we approached. Camryn was immediately attracted to pile of large brown dogs. For the record I will state that she had lots of stuffed animals at home that she had gotten as gifts and I also am not the kind of parent that buys their kid something at the checkout just to stop the whining. Being in child development I know that giving into the tantrum is the best way to keep it going so I just wasn't the type to cave when Camryn asked to buy a toy which is exactly what she wanted to do with this dog. Most kids might whine or even cry but accept that this was what would happen. Not Cam. I had gone over the rules before we even got to the toys that we wouldn't be buying anything today. So she had even been forewarned. Child development technique #42. Check.

Almost immediately upon being told we couldn't buy the dog she went into a full out scream right there in the middle of the busy walk way. It was so primal I'm sure dogs for miles perked up their ears to hear this strange new sound. This spot just happened to be perfectly situated in front of the elevator and was also the pass through to the restaurant and one of the quick passageways between store sections. She probably couldn't have picked a more awkward or inconvenient spot if she had had time to plan it out. By this point the screaming was now blood curdling akin to something you might hear in a horror movie. Before I knew it Camryn was down on the ground kicking and scratching at anyone who came within 2 feet of her.....which was um....everybody. The parenting coach rushed over and was telling me all the stuff to try. "Don't give in. Restate the rules. Tell her what you'd like her to do now. Let her chose what to do". A frustrated lady with perfectly behaved children sneers and says "just buy her the toy already". Sadly I had learned over the years that there was no way to sooth Camryn once she got this upset. What this lady didn't understand is that even if I did buy the dog it wouldn't change anything. Camryn was already beyond comfort and we were only a minute in. Getting the thing she initially wanted could no longer fix what was going wrong for her. Unlike most kids who will actually stop their tantrum when they get the item they were screaming for this was never the case with Camryn. It was like Pandora's box was open and there was no way to close it now. In many ways this made me have a soft spot for Camryn because in my heart I knew that there was something completely out of control for her. She wasn't misbehaving to manipulate me. She was simply so totally out of control she couldn't contain it. After about 10 minutes of the parenting coach trying to employ strategies with Camryn she finally said "I think we're going to have to carry her out". This certainly wasn't a news flash for me. I couldn't help but remember having to carry Camryn out of Disneyland 3 years earlier...in a football hold....all the way back to the hotel. To say that I felt both vindicated and frustrated by the lack of any new ideas from a so called expert would be an understatement. I mean it felt good that I had been doing what I should have been doing all along but that didn't solve anything either. So there is me with a 4 and a half year old again in a football hold. She is screeching bloody murder with Andrew and a parenting coach trailing behind me. Don't think there weren't hundreds of nasty people glaring at me as if I was Mother of the Year just to make sure that I truly enjoyed my IKEA visit that day. For the record that doesn't help people. If you don't think I'm acutely aware of how annoying the screaming is or that she really IS too old to be doing this then you must be drunk. I know already!! Thanks for helping me feel so much better with your snotty looks. That's great. Love you too.

By the time I got back to my car and was able to wrestle Camryn into her car seat I was frazzled and sweaty. She continued to scream inside the car. I just sat down on the pavement and cried. I'm sure it was the ugly cry too. There was no holding back at that moment. I realized that my life was not normal. It wasn't the white picket fence life I had dreamed of. I was a single parent, my kid was miserable, I felt totally unequipped to help her, and now I'd never be able to show my face at IKEA ever again. So I just sobbed. I'm not sure if it was more out of relief that this was over or out of sheer anger at the stupid people who have no idea what it's like to be in that situation. Sure most parents have had their 2 year old behave badly at the grocery store but I'll say you need balls of steel to live through an IKEA public shaming.

It would be worth noting that our parenting coach quit her position the very next week. I don't mean just with us but with the agency. I'd like to think maybe she had a better offer at some prestigious firm or that she would have quit anyway but somehow in my heart I suspect that we were the straw that broke her will to live. Sorry about that Tanya.



Fast forward a few years. Camryn is still struggling. I wish I could report that things were going super but that wouldn't be entirely true. Don't get me wrong I love that kid to bits and I even love how deeply she feels things. There is something very raw about how she experiences the world. Camryn brings a joy to my life that I can't express in words. She is one of the most genuine and real people I know. When she is sad it's because whatever upset her truly mattered in her world. When she is happy she beams. There has been some improvement. She now does really well out in public most of the time. We've even been back to IKEA with modest success. Thank goodness because now at age 9 I couldn't carry her out if I needed to. People would probably think I was kidnapping her....as if someone would want to steal the screaming kid. We still have some crying at home but it's at least better than it was. There are no more hour long events thank goodness. However Camryn's most recent report card included a note from the teacher that she is crying frequently in class and often it's out of proportion to the event that upsets her. Yah, no kidding!! Is this news to anyone? Keeping in mind that her brother has now been diagnosed with a form of Autism I will also reveal that several medical professionals have flagged Camryn as possibly being on the spectrum too. Of course I found this out years after people first suspected it and only by chance. Apparently someone had referred her to be assessed when she was 3 and a half but never bothered to tell me. Then again at 5 I found out by accident that the most recent doctor we had seen also was thinking Autism. Maybe I look dangerous or something. Nobody seems to want to tell me that my kid isn't typical....doesn't the fact that I look crazy, sleep deprived, and completely frazzled indicate that I probably already know?....or at least have a clue. Anyway once I found this out I was all over it. I've been all over it since she was 4 months old. She was finally assessed at age 6. For reasons that I won't completely get into they felt that Camryn didn't have Autism and surprise, surprise that I should give it some time and that she'd grow out of whatever difficulties she was having. Wow, never heard that before. Pure genius I say!! Do you detect the sarcasm? So exactly when the hell is she going to just grow out of this? It better be before she's 85 that's all I'm saying.

Now that she is 9 and we are still dealing with all of it I have decided to have someone else take a fresh look at this. The same psychologist that diagnosed Andrew last summer has agreed to see Camryn. So in 4 weeks we will be going through this process again. I am having major apprehension over this. Not only am I still waiting for the results of Andrews genetic testing for Muscular Dystrophy but I'm also struggling with after effects from my car accident. Three years ago when the first assessments took place for Camryn things just didn't go very well. There were lots of reasons for that but ultimately the teacher reported that Camryn was doing just fine. It didn't matter that she was struggling in all the other areas of her life....and not just with me.....but that if she was doing well at school it couldn't be as bad as I made it out to be. Yah, awesome...again not new info. If it didn't mean that Camryn had to suffer in the process I'd be tempted to say to the teacher and the school staff that since there was nothing wrong according to the school they could figure it out on their own. I felt that they kind of threw Camryn and I under the bus 3 years ago so now they could find a way to deal with her daily crying and hiding under tables. However, it breaks my heart that Cam is so sad in class.

Of course I know Autism isn't just about crying. It's more than that. She is quite a different presentation from Andrew. She has terrible eye contact, she really really loves flying animals....a lot....did I mention I hate bats and birds....and then there is the history of speech delay and appearing deaf as a baby even when she wasn't. All of that and a family history means it's worth the time and effort to answer this question once and for all. There are days when I don't see it but there are lots of days when I do. I think I'm finally ready to find out.

So as if my plate weren't full enough I've ordered another serving of chaos and drama. However if it leads to some clarity and understanding for Camryn it's worth it. And if I hear one more person tell me she's fine and will grow out of it I just might flop down on the floor in the middle of IKEA and scratch someones eyes out. You've been warned.