I Quilt Therefore, I Am.

I go through periods of intense sadness about Max. It isn't that I feel sorry for myself, but every once in a while, Autism knocks me on my ass. I wish I was stronger, and I feel terribly guilty that my friends and family have to put up with me during these times. So I tend to turtle, try to work through the feelings, and come out on the other side a happier me. When I don't want to over think things (especially if I can't actually "fix" the problem), I bury myself in a project (like a bedroom makeover). This time the project I chose was quilting.

My mom bought me the fabric for this quilt years ago (before I had kids). The quilt is based around the colours in this butterfly fabric. The problem is that I like the fabric so much I have been afraid to cut into it. It seems a waste to not use it though, so I decided what the heck, might as well go for it!The pattern I chose to tackle is called "Crazy Quilt". It seems appropriate given my circumstances. Plus, one of my favourite people in the universe tells me I'm crazy every time we talk (which truth me told, stings a bit), but maybe it's an accurate assessment. I like to think that given what I'm dealing with, I'm the sanest person I know.What I dig about this pattern is that while you are quilting it, everything seems off kilter. You just have to trust that it will turn out okay. In the end what you get is this neat effect of uneven shapes that somehow fit into a perfect square.I enjoy the process of sewing the smaller pieces of fabric together, ironing them flat, pinning them and then repeating the process again and again. I don't have to think, it's relaxing, allows me the time to sit with my feelings, and in the end I have something to show for it.The main blocks are now complete. I still need to sew the smaller border blocks, and then sew the top together, but I put all the squares down on the floor to get a sense of how big it will be. The hard part of actually quilting it together will take me a while (it's a big job for sure). Anyway, that's what I've been up to the last few weeks. I think I'm okay now. Who could stay sad looking at these bright fabrics? Plus the sun is out - gotta love that!

Who Else is Sick of the Olympics?

I am ready for the Olympics to be over and done with. Truth be told, I was already sick of them before they started. And though I didn't think it possible, I hate them more each day.

• I don't care about how many medals Canada has won.
  
• I care even less if our hockey team beats the Americans.
  
• If figure skating is a sport, then ballet should be in the summer games.
  
• Anyone who catapults themselves down a track made of ice at 140km an hour shouldn't be too surprised if they die doing it.
  

Most of all, I find the amount of money spent on this event to be completely disgusting. My girl Julie Cole had it right 2 years ago. When I think about the cash thrown at the opening ceremonies alone (pegged at over $38 million) I want to invite the entire VANOC committee to go have sex with themselves. The cost of hosting the 2010 Olympics is already coming in at over $2.5 billion dollars (what with having to truck in snow at $1000 a truck from the interior of BC and all). Don't even get me started about the whole Own the Podium fiasco, I might go into orbit.

Families with children with Autism are bankrupting themselves to get their kids the treatment they need just so they can have a semblance of a normal life. Even worse are the kids who will get no treatment because their families don't have resources to deplete to get them crucial ABA treatment between the key ages of 2 and 5 years old. So pardon me if I don't give a shit about the fact that we didn't medal in downhill. Max is a bigger hero in my eyes than any Olympian could ever be. It's time to start valuing what is truly important, and it isn't an event that has essentially turned into yet another mass marketing vehicle for huge companies to pedal their wares. For shame.

Max Update: My Home Depot Buddy!

First we conquered the grocery store. Next on my list of places I like to go (a lot) was Home Depot. We all know that Home Depot can be a busy place, so I decided to make our inaugural visit on a weekday morning, bright and early. Turns out the only people at Home Depot at this time are contractors, so we pretty much had the store to ourselves. Being the super geeky mom that I am, I decided to shoot a video of our trip for all the world to see. Thank dog it went well, or I would have had egg on my face. Actually, I just wouldn't have posted it (wink).
What I found really interesting about this experience, is that upon entering the store (an overwhelming wide open space) Max immediately figured out how to self-regulate by squishing himself into the cart. He has been finding ways to self-regulate more and more, often by placing pillows or blankets on his legs (the deep pressure is soothing). This is a really important step for Max as it means he is finding ways to cope with his world on his own. Yay Max!

Not At My Best.

Max's sleep has been all over the place lately, which is code for Scott and I have not been getting much rest at night. Looking back over other posts where I am bitching about Max's nighttime antics, I know that paired with sleepless nights and increased head banging, are bursts of progress. But truth me told, at 3:30a.m., the fact that he has mastered the phrases "OH NO!!" and "All Done Sleep!!" is not all that charming.

Max's therapy team has given us a game plan to follow when he wakes up at night. When he bangs his head on his bedroom door, we need to teach him that this is not an appropriate way to get our attention and that he needs to knock on his door with his hand and say "help me". But he doesn't get off the hook that easily, because getting up at 3:30a.m. is also not okay. The theory is that he is banging his head not only to get our attention, but to fulfill his sensory needs. So, after showing him that he needs to knock on the door, and giving him the choice of going to the toilet or getting a squish, I have to get him back into bed (because he inevitably tells me "No Toilet!") and apply deep pressure to his head, core, arms and legs, for about 10 minutes. Then I tell him "Night, night Max, time for sleep" and I leave. At least, in the foggy haze of 3:30a.m., I think that's what I did.

Max and I repeated this dance every 15 minutes until 6a.m., when I deemed it appropriate to great him with "Good Morning Max!" and I begrudgingly let him come downstairs so we could "start" our day. Here's hoping he's as tired as me and we both sleep through the night.

(Early) Morning Smile.

Happy Valentine's Day! I'm up super early today because...because Max is up super early! Oof.

Max Update: Pure Joy.

Despite being sick this past week, Max has had an explosion of progress. Yesterday he requested to go to the bathroom and then had a BM in the toilet! And then he peed (also in the toilet!). Imagine that! He has also mastered stringing beads, something we have been working on for months. A few days ago he was playing with one of his car/ramp toys, and when Cameron came and sat down with him and started playing with the same toy, he took turns with her instead of pushing her away. We joked that the only reason they were playing nicely together is that they were both sick, but I'll take it!
I also got a report today that Max actually drank water from a straw this afternoon in therapy! He has also mastered blowing horns in his speech therapy sessions (this is a picture of me learning how to work on this with him). A few months ago he wouldn't even tolerate having the horn touch his lips. The ups and downs of this journey are exhilarating and exhausting. We celebrate the ups - the successes are what keep us going.

Morning Smile.

Max has recently started eating with a fork. This is pretty big time for us as we have been working towards this for a while. Yay Max! And yes, he is giving me the "Mom, let me eat my breakfast in peace you crazy lady" look.

Max Update: My Grocery Buddy!

Over the past month, Max has started going to the grocery store with me. He sits in the cart and seems to really enjoy helping pick out what we buy. Since he is such a veggie and fruit monster, we start in the produce section. I have him pick between green grapes and purple grapes, select between honeydew melons and cantaloupes (he usually asks for both), and he always happily reminds me that we need "CELERY". He even selects potatoes and counts with me as he puts them in the bag. When I ask him if we should buy his sister Cameron milk, he shakes his head and says "no". He labels everything we put in the cart and when he doesn't know the name of something he soaks up my words and does his best to repeat them back to me.
I look forward to my weekly trip to the store with Max. It is special Mommy-Max time, just for us. We even have inside jokes! And while being able to go to the grocery store is a small trip in the grand scheme of things, every bag of grapes, every stalk of celery is a step in the right direction.

Max Knows His Animal Sounds (& His Name!).

Max has had a lot of progress over the past few months. One of the key areas we have noticed an improvement is his speech. He is now spontaneously requesting things he wants (with minimal prompting to label the item). He knows most of his animal sounds, though sometimes due to the fact that he is still working on pronouncing the letters "B" and "P", or anything that requires you to push air across your lips, it is hard to understand unless you know what you are listening for. His eye contact has improved dramatically, and he knows his name and his age! Not bad when you consider he only started repeating sounds when prompted on August 20th 2009. Amazing what a lot of hard work over 4 months can bring!

Welcome Twenty-Ten! (Can I Get an Amen?).

I went to bed at 9:45pm last night (quite the party animal I know). Part of me felt like I should stay up just to make sure that 2009 was ushered out, the door locked firmly behind it. What a year. There were some highlights for sure. Max made amazing progress. Cam changed from a baby to a little individual before our eyes. I was selected as Mabel's Labels Official BlogHer Correspondent, participated in the Autism Speaks walk in Toronto, witnessed the miracle of life, and braved my college reunion. But when I look back at 2009, I will always remember it as our first year of dancing with Autism. Wading through the bureaucratic muck trying to get Max funding. Feeling like the only people who really got what we were going through were stuck in the muck with us.2010 will be a better year. In fact, 2010 is going to kick 2009's butt. I'm not discounting the good stuff, but I am looking forward to topping it with even better stuff. I'm not big on resolutions, but for 2010 I am aiming to keep life calm and balanced. I know Max will continue to have amazing progress (he seems to have new words daily at this point). I know Cameron will continue to amaze and astonish us. I need to get back to writing on a regular basis. I need to spend more time with my friends. I need to make sure I get some time away by myself to recharge.

So, 2009, don't let the door hit ya where the good lord split ya. 2010, why don't you take your coat off and stay awhile? Can I get you something to drink?

1 Year.

It has been one year since Max was officially diagnosed with Autism. A year of progress. A year of pain. A year of hope. A year of grieving.

Max has experienced tremendous growth over the past 12 months. When he started therapy he could not transition from the waiting room to the therapy room without having a complete meltdown. The reports from each session would include "50 minutes of behaviour" (meaning he was unable to complete tasks because he was screaming or throwing a tantrum). It's rare to see those types of notes in his reports these days. More often than not I get reports that he had a good, if not great session. In January he had no words. Now he greets people unprompted, tells us what he wants, and has mastered "no" with gusto. His therapists take such joy in reporting his progress, celebrating his wins with us.

The progress comes slowly. Most days it feels like two steps forward, one step back. We take tremendous pride in the wins and try not to feel devastated when Max's behaviour slides. It's a grind every day and it takes its toll on me, and on Scott. We try to have a sense of humour. It's dark and rude and sarcastic, and you probably wouldn't understand it if you overheard us. But it helps and it keeps us sane. We are burdened and blessed, tested and enlightened. I would never ask to be on this journey or wish it on anyone, but I will say I have met the most amazing people because of Autism, and my life is richer for it.

Here's to next year little boy. I look forward to our wins.

Sink or Swim.

Every day, I get to make a choice. Do I sink or do I swim? Most days, it would be easy to say "I can't do this, this is too hard, I'm done". But really, that isn't a choice and who am I kidding? Every day I get up, push my heavy heart aside and look in the mirror at the tired and worn down version of myself that I never envisioned when I told Scott "I want a baby". I look in the mirror and triple-dog-dare myself to muster up the strength to battle through another day. To give Max what he needs, make sure Cameron gets the attention she deserves (and demands!) and that I leave enough left over for Scott (or at least try). I go to work and I do my best to do a good job. Most days I feel like I fall short on all fronts. I look at Max as he gets bigger and harder to manage and I worry. He is freakishly strong. We are now at a point where we can't physically force him to do anything he doesn't want to do. I'm only 5'4 - he'll tower over me in the not so distant future. What am I supposed to do then?

I've had to make some difficult decisions around Max over the past few weeks. I decided to remove him from his daycare (the one I worked so hard with to transition him to the preschool room). After spending a lot of money attempting to train their staff and get him into a consistent routine, it was all for naught. Their staff turnover made it impossible for Max to pair with his teachers and their programming just wasn't able to support a child with special needs. I feel like I failed. I wanted so badly for him to be in an environment where he would get exposed to "normal" kids. But after he got sent home with feces on his shirt and was allowed to eat mashed potatoes with his hands (he knows how to eat with a spoon and they didn't even give him one), I knew that this daycare was doing more harm than good and I needed to find something else for him.

That something else is to be determined. For now we are increasing his therapy hours, leaning on our respite worker, and calling in Super Bumpa and No Nonsense Nana. As I got ready to leave for work this morning, I looked out the backdoor at him, running around the backyard happily, his respite worker Kailee playing with him, and I felt so so sad. I want him to get to play with other kids. I want him to want to play with other kids. He isn't there yet. So I swim on. Of course I do.

November? Really?

When Fickle Feline gets quiet, you can safely assume that I am completely overwhelmed with life and just trying to hang on for the ride. I wish I could tell you I was out crusading against Autism, brunching with Dalton McGuinty to get him to see the light, but most days, I am just trying to keep my head above water and be a good mom. But I do need to update more, because there is a lot to say. I just prefer to be positive, so when I'm in a head space that is "cup is half empty" instead of my usual "cup is overflowing", I tend to get introverted and not want to put that negative energy out into the universe.

But... my kids did dress up for Halloween...

And there are a lot of good things to focus on:

- tomorrow I am going to get to meet a mom who brought her son to blueballoon after reading my blog.
- the trees in my neighborhood are beautiful (yellow and orange and red)
- Max is having a lot of progress in his therapy and starting to verbally request things without a visual prompt (huge!!)
- my custom Christmas cards have arrived and are ready for me to fill out and put in the mail (maybe that will help me get in the Christmas spirit?!)

More later - I promise not to take two weeks to update either!

Disappearing Act.

One of the hardest things for any parent to do is look at his or her child and say "my child is not like the other children, something is wrong". Even harder is picking up the phone, and calling a doctor to schedule an appointment, telling a nurse why you are in to see the doctor, and then having a doctor examine your child to confirm your suspicions. And so starts the journey for many parents who have children with special needs.

Part of my job is taking those calls from parents who are just starting their journey. I listen to their concerns, document their child's case history, and figure out which therapist they should see, who can best assess their child's needs. It is a great job, and if I can be a positive part of someone's journey, a part that doesn't kick them when they are down, or leave them in tears in a parking lot, then that's a great day. Even better if I can make them feel confident that they are making a strong first step, or let them know that they are not alone.

It does take a lot out of me (hence the disappearing act), especially the parents who are calling because their child has a new diagnosis of Autism. It hits close to home. I want to take these parents and give them a virtual hug, tell them I know it sucks, I know their world feels like it is spinning out of control and that they feel like they don't know where to turn. I want to tell them that it will get better, and that I get it, that it will always be hard, and that no matter what is "wrong" with their child, he is still perfect in his own way. He is still their baby.

At the end of the day, it is so worth it to help people. It helps me take the focus off of myself, and to remember how fortunate I am. If I can lift someone up for even just a few minutes, that is a great thing. It feels good to pay it forward. Dog knows many parents have done it for me.

The Journey.

I was speaking with blueballoon's Director of Behaviour Therapy tonight, about Max, Autism, the journey, my frustrations. I have been feeling really anxious about Max lately. Wanting answers. To know where we are going. What's the plan? What about junior kindergarten? Is Max getting everything he needs? Are we doing absolutely everything we can for him? How does he stack up next to other kids in IBI programs? Is he having enough progress? Not enough? How does he measure up to the supposed benchmarks that are used to determine who gets funding and for how long? Yeah, I must be a real treat to deal with right now, don't I know it.

I was reminded that when Max started in January, his goals were very basic. He was unable to transition from the waiting room to the treatment room without having a meltdown. It took him a long time to bond with new therapists. He wasn't able to imitate or sit at a table to do work. And now, as frustrating and challenging as his behaviour can be at times, he transitions without a problem. He says "hi" and "bye" to everyone. He looks you in the eye. He is beginning to use language functionally. He is starting to tolerate his little sister. He can follow a visual schedule, sit at a table for 45 minutes of therapy, blow bubbles, and he no longer throws tantrums because he feels that nobody understands him. He is potty trained (for the most part), can walk down the sidewalk without bolting into the street, and most importantly, he is happy.

It's easy to lose the forest from the trees in this journey. I'm thankful I have such a great team supporting Max (and me).

Video Killed Radio Star.

It's been a while since I posted a bunch of videos, so I thought I'd show everyone what we were up to on this beautiful fall day.

Cam & I discussed Obama being nominated for a Nobel Peace Prize (we think he will absolutely do something to deserve it - other than being the 1st black president, but we question the timing of it). We also seem to agree that the Ontario Government really, REALLY mishandled the whole e-Health record situation. With all that money to piss away on consultants, it blows our minds that they don't have enough money for therapy for children with special needs. For shame.


Cam likes to dance. She also likes the old skool rap, and does a pretty solid MC Hammer impression (hum "Can't Touch This" as she dances to see what I mean).



Most of the time Max prefers to steer clear of Cam, unless of course it is to give her a bop on the head. He seems to have turned a corner as he climbed into the sandbox next to her today and played right next to her for about 15 minutes. He then proceeded to give her a loving thump. Ah siblings...



Happy Thanksgiving everyone! Remember to wear your eating pants!!

The Things I Wish For.

I've been feeling a lot of mixed emotions lately. Excited when I witness tangible displays of Max's progress, contrasted with moments of clarity where I see just how different my little boy is from all of the other little boys. Earlier this week, when I picked Max up to take him for his usual afternoon of therapy at blueballoon, I noticed that there was a note taped to his cubby at daycare. On further inspection I saw it was an invitation to a birthday party. I quickly realized that Max had not been invited because he was actually considered a friend, all of the kids in the class had been invited. For a second I thought "that's nice that they included Max, but he probably won't be able to handle it". Then I shook my head, and thought, "he may not be able to handle it, but we have to give him the chance to try". This party is at one of those big indoor madhouse-gym places, with slides and bridges to run across, places to bounce, and lots of ways to burn off steam. In actuality, Max will probably love it.

I called and left a message to rsvp, thanking the mom for inviting Max, and also explaining that Max is Autistic, and that he will probably enjoy it, but if he is having a hard day that I hoped they wouldn't take offense if he wasn't able to stay for the entire party. It is important to me to give Max the same opportunities that his peers get, that he be included. The older he gets, the more likely it is that he will get excluded for being different. I hope and pray and wish for that not to be true, but I know that as kids get older, they are less accepting of kids who don't "fit in".

For now, Max seems to be well liked by the kids at his daycare. They don't mind that he doesn't really play with them. They accept that he seems to get special treatment at times, and that he gets visits from special teachers that are only there to see him, and not everyone else. They don't hold it against him when he acts disruptive, and they don't question that Max gets picked up during nap time every day. He even gets the odd hug from the girls in the room (we can't expect them to resist such a handsome boy now, can we?).

When I look back at pictures of Max as a baby, I remember very clearly all of my hopes and dreams for Max. I still have hopes and dreams for him, but they are different from what they used to be. I just want him to be happy, feel loved, and to have all the opportunities in the world. I never want him to feel like he doesn't fit, or that nobody "gets" him. I never want him to lose that smile, that pure heart. I want him to be surrounded by people that see all of his beauty and promise and love him for everything he is. These are the things I wish for.

TKO. Autism For the Win.

This past week has tested every thread of my being. I'm not sure if Max is coming down with something, is bummed that summer (what we had of it) is over, or is just acting like a three year old, but his behaviour has been off the charts. And not off the charts in a good way. Off the charts in a way that makes you want to scream "Okay Autism, I get it. Uncle. You are stronger than me. You win. I give up!". But that isn't an option, so you lick your wounds, gather your strength, and live to see another day, another battle.

If I had to describe Autism, I'd say Autism is a Mixed Martial Arts fighter, straight out of the UFC. Autism will kick you when you're down and thinks nothing about punching you in the back - right in the kidneys. I've been fighting this way too much by the books, more like an amateur boxer in the Olympics. I've been playing "nice", following the rules, and I keep getting surprised by the low blows. I have to remember that Autism takes no prisoners. Autism will trip me, spit on me, break my arm even after I tap out, and most of all, Autism seemingly never sleeps.

Sleep is my achilles heal, and Autism knows this. When Max doesn't sleep, he's off the walls, and I am left without the strength to manage him, to cope. Add to that a baby who needs me too, a full-time job, and a husband who is also worn out from being in the ring fighting Autism with me, and you have one beat down Katrina, who this week, was left cowering in the corner, my face a pulpy mess.

So, what to do? Try to get some sleep. Then gather my stamina, bring in the big guns, and pray that this next week I am stronger than Autism. After all, I can fight dirty too.

These Boots Are Made For Walking.

Yes, it's September. And yes, Max is already wearing his snow boots. You would too, if you had boots like his. They are Geox Junior Boys Snow Boots. We call them "moon boots" because they look so technologically advanced that we would hazard a guess that they are the official uniform of astronauts at NASA.

Why, you ask, does Max need fancy "moon boots"? He needs them because this child, much like his father, will not tolerate cheap footwear. The one time I bought him cheap boots, he absolutely refused to wear them (plus he acted like he couldn't walk in them, but whatever). Scott ended up taking him out and getting him fitted for Geox boots. In the end we ended up buying him two pairs of boots. This year I just went ahead and bit the bullet, got him the expensive boots right off the bat. And he loves them. He loves them so much that the moment he catches sight of them, hidden the back of the closet, he demands to wear them. All day. On a sunny day in September. No pants, no socks, just a boy and his boots. Quite a vision really. He wore them from noon until bedtime, when he was finally willing to take them off for his bath. Good thing they are specifically built to breathe, so his feet didn't sweat. I guess that's part of what you're paying for.

Not to be outdone, Cameron also loves her boots. More on that later though. I have to dig my old boots out to take to the shoe repair place to get the heels fixed. No new boots for me this year!

Cameron: Human Whack-A-Mole In Training.

I have written before that Cameron is a gift. And not just a birthday gift either (though she was born on my birthday). She is balm for my soul. She is pure joy on the hardest days. She has a smile that warms my heart. I rarely worry about Cameron, though I do feel guilty about that fact that I don't worry about her like I worry about Max. Cameron loves her big brother. She puts up with a lot. For a few weeks she even tolerated being treated like a human whack-a-mole as Max decided a fantastic way to get attention was to bop her on the head and knock her on her butt at every opportunity. Lucky for Cameron, Max's Senior Therapist Valinda helped us sort it all out and Max has cut out the Rabbit Foo-Foo act.Cameron wants to do whatever Max is doing and he finds this terrificly annoying. As she gets bigger and more insistent, I often sit back and observe, letting them work out their sibling relationship. Of course I would step in if either of them got out of hand. I've learned that Cameron has it in her to cry "wolf" and that we need to be aware of that. She is also not above biting Max, which is an issue because he is oblivious to pain and she could really do damage and we wouldn't know until we saw the evidence. Most of the time their relationship is normal though, and through thick and thin, I am so happy for Max that he has a little sister.
The thing that cracks me up the most about Cameron is her love of gadgets. This girl loves remote controls, blackberrys, cell phones, wireless mice, and laptops. Even when she isn't feeling well, she finds solace in capturing a piece of technology and claiming it as her own. My kind of girl.