Monday, June 28, 2010

Mental Health Monday: I Try.

If you know me IRL (in real life), you are well aware that I give Casper a ride for his money in the pale department. While I often joke that when I'm 50 I'm going to look AMAZING while the rest of my sun worshipping friends will have faces like leather handbags, I do wish I didn't have only two choices when it comes to my skin (ghost white or lobster red). All of this gardening has forced me to find a decent hat to protect my delicate epidermis. I settled on a Tilley because I'm not trying to be stylish when I'm gardening, I just need a hat that will protect my skin. Please excuse the lack of allergies are still making mascara out of the question.With a long weekend coming up, I decided that NOW is the time to do my mulch project. Also, I start working full-time on July 5th! Max and I headed over to Agram Garden Centre this morning, which was a complete nightmare. We left, with Max covered in mud and me with their business card tucked in my pocket. When we got home I gave Max a bath and called to order 2 cubic yards of mulch. That's a lot of mulch, and I find myself a little too excited about its delivery on Wednesday.When I am working in my garden, I feel at peace. My mind is clear. There are a few new additions to my garden - a Buddha statue in the meditating pose, and a bird statue (which as my friend Alana points out reminds us that small beings have a lot of power). I like them because they make me pause for a moment and breathe. Breathe.
I wonder sometimes if other people have to work as hard as I do at being happy. I know that part of my sadness is due to the stress of our overall situation with Max. It takes its toll on all of us. I look at my kids and soak up their joy - it is contagious and for that I am grateful.They are never more beautiful than when they smile. But a close second is when they sleep...with chips.

Sunday, June 27, 2010

Not a Gardener.

I am not a gardener, not by any stretch. The only plants I've ever been successful at keeping alive are hanging baskets. I even water them on hot days. But this summer, something has changed. My mom told me it would happen - that one day I would have the time and energy to garden. Little did I know it would be because all my kids want to do is play outside. All the time. I figure if I'm going to be outside, I might as well get something done.

My biggest gripe with the backyard is that the previous owners planted way too many bushes. My project this summer is to get a handle on it. Much to my mother-in-law's chagrin, I am ruthlessly cutting down anything I don't like the look of.
There are some plants that I like. This bush with red leaves is pretty, so it can stay. I put down some dark cedar mulch at its base to keep the weeds down.
There have been some interesting discoveries. When I cleared out all of the weeds and overgrown bushes, I figured out that these remaining bushes are half dead. Fine by me, I'll cut them down if they don't shape up.
You may recall that we are cursed by a massive poplar tree in our neighbour's yard. Every year it drops nasty fluff all over our backyard for the entire month of June. In the Fall, we rake and rake and rake some more, only to find even more leaves blanketing our backyard the next day. This year seems to be especially bad - my allergies are going haywire, causing my eyes to swell shut. Last week, Cameron pointed at the tree and said "tree is pooping!". I looked at her and replied, "Yep, it sure is".
This tree is cramping my gardening style. I want to finish my hack and slash project, catch up on the weeding, and top everything up with some more dark cedar mulch. I can't do that until it stops snowing though.In addition, there are some curious things about our backyard. Like these bushes...I'm convinced that whoever planted them put a blindfold on and dug random holes in the backyard and dropped them in the ground.
Stay tuned - there will be more pictures. I'm finding spending time working on my garden is good for my head. It's physical, I don't think too much about the things that stress me out, and when I'm done I can step back and enjoy the results of labour. And man, if that tree ever gets taken down, the possibilities are endless. Hey, I can dream!

Sunday, June 20, 2010

Photo Essay: Walk Now For Autism 2010.

This year's Walk Now For Autism fell on Father's Day, so I wasn't sure what the turnout would be like, but I knew at the very least, the Carefoot Crew would be there and that's enough for me. We got up early just like last year, loaded strollers and t-shirts and kids into the cars (Nana & Bumpa caravanned with us) and hit the road. I got my requisite picture of Scott driving into Toronto:Max was a little confused as to why he got hustled out the door so early on a weekend (I don't blame him). No pic of Cam as she was riding with Nana and Bumpa):
And to prove I was there, I snapped a self-portrait too:
Max did not like the underground parking and he got a little upset about it. We never know on any given day what he will be able to handle - some days he is non-plussed about stuff like that and other days it sets him off. Scott got him into a stroller (which didn't last long) and he seemed to calm down:
We got Cam's stroller loaded up and I caught her giving me a toothy grin:
Our meeting spot was the Timothy's Coffee shop at Queen & Bay. While we waited for Team Maxwell to assemble we had some breakfast. Here you see Cam and Bumpa discussing her chocolate chip muffin:
My friend Athena (who I've known since grade 1!) brought her whole crew to walk. They walked with us last year, and it was amazing to find out they consider this a yearly ritual and plan on joining us next year as well! I'm glad her husband (also named Cameron) didn't mind sharing his Father's Day with us:
The walk started at Nathan Phillips Square (a great place for events like this):
It was hot and bright and busy. Cam wasn't too sure what she thought of the whole thing, but she liked being part of it:
It was amazing to see so many people out to support the cause. I even bumped into my friend Candy who I haven't seen since our wedding! She got to meet Max while he was having a meltdown, but hey, it isn't like anyone who is walking for Autism hasn't seen that type of behaviour before:
Max found the whole scene completely overwhelming. I wasn't sure if he was even going to be able to participate in the walk. Lucky for us, Bumpa (aka "the Max whisperer") was there, and Max clung to his hand like he was a safety vest in a choppy ocean. I supposefor Max, that's exactly what his Bumpa was in this sea of chaos:
Max stuck with Bumpa the entire way.
Here's Athena and her kids, with the rest of Team Maxwell trailing behind:
Nana pushed Cam's stroller - she wasn't quite ready to hike 5km this year:
Around the half way point (when we tried to turn around), Max had had enough and he had a huge meltdown. Scott and Bumpa were kind enough to take him home:
The walk was so busy that we got separated from the rest of Team Maxwell (my public school friend Shannon and her crew). Here you see us reunited (as a result of mad texting - where u @? I don't c u!! w8t 4 us @TH!):
A definite highlight was bumping into my blog/facebook friend Bariah who writes Stranded in Motherhood. This was our first face-to-face meeting!:
The sign has been updated since last year's walk. Heartbreaking:
Ole looks a bit lost in thought. I wonder if he was as overwhelmed as I was by all of the people affected by Autism:
When we completed the walk we were greeted with bubbles. Cam thought that was pretty cool:
We got separated again! But here is a partial pic of Team Maxwell with Shannon and her crew, Ole, Nana, my oldest friend Elizabeth, Cam and me (I'm surprised my pants stayed up with my pockets so loaded up!). We are standing in front of the Grand Club banner because we raised so much money (over $4000):
This is my favourite pic of the day - Shannon, Athena, myself and Elizabeth. It is wonderful to have the support of friends who have known me since I was a child. Amazing:
Once we got home we unwound, had some lunch, naps, watched some world cup soccer, and then headed over to Nana and Bumpa's for a swim. Max and Cam are natural water babies. If they had their way we would have stayed in the pool until dark!
Thank you for everyone who supported Team Maxwell. Whether you joined us on the walk, donated, or sent us your good wishes, we appreciate all of it more than you can imagine. T-shirts will be in the mail in the next week! Mabel's Labels draw will occur in the next few days. And of course, if you still wish to donate, that would be awesome!

Thursday, June 17, 2010

Guest Post: A Father's View on Having a Child With Autism.

The following is a guest post by my husband Scott:

Most of the time, Kat tries to be positive about Max on this blog. She focuses on the progress he's making, on the good days, on the funny moments that warm our hearts and help us through the tough times. But since we're asking you to donate to Team Maxwell for "Walk Now for Autism" on June 20th, I want to try to give you the big picture of what it's like to be the parents of this particular autistic four-year-old boy.

Before I get to the big picture, I'll start with a single moment that defines the challenges we face in raising Max. Last November, Max and I were alone in the house while I was sick and he was running amok. At the time, he was fixated on grabbing everything that wasn't nailed down on the main floor and throwing it over the child gate, down the stairs to the basement. When he gets in one of those moods, no amount of scolding, distracting, restraining or begging is going to stop him.
Partly due to my frustration at this situation and many others that led up to it, and partly to my physical and emotional exhaustion at the time, I suddenly collapsed on the kitchen floor and started sobbing uncontrollably. I've never had a crying jag like that before or since (Kat can confirm I'm really not much of a "cryer") but something about that moment broke me and I laid on the floor, face down, wailing and weeping, unable to hold back the pain and sadness that was obviously eating me up inside.

When Max noticed what I was doing, he paused from his throwing spree to run up to me, sit on my back, and laugh hysterically at my performance -- not out of maliciousness, but because he literally thought I was putting on a performance for him and he found it amusing. He didn't know how to recognize how very, very sad his daddy was.
This is a snapshot of the past two years in a life as a parent of Max. He's not like other four-year-olds. While he appears "normal" (and is in fact ridiculously beautiful) on the outside, he's like an alien from another world who doesn't seem to understand human emotions and interactions. He communicates in his own language of babbling and garbled words and frequently gets very frustrated when you don't understand what he's trying to tell you. His care workers tell me that he understands most of what I say to him, but I really have no way of knowing most of the time.

Beyond the emotional and behavioural challenges, there are other more tangible issues that we face. He can be quite destructive on occasions when he doesn't get his way -- which can be frightening since he's so big and strong for his age. He's made very little progress with bathroom training so "accidents" occur daily and frequently. And we never know on any given day whether he's going to sleep through the night -- it's not uncommon for him to jump out of bed at 1 a.m. and decide that's all the sleeping he's going to do tonight. You can imagine what that does to our daily productivity and emotional well-being.
Kat and I understand that when you have children, you must sacrifice everything to do what is right for them. As Max's parents, those sacrifices are particularly difficult to bear. We spent over $50,000 in therapy fees on Max in the past 12 months, which is a lot for a family like ours. Without the generosity of our parents contributing to this battle, we would not have been able to keep our house. Other families aren't as fortunate as we are to have the support that we have.

One thing I've never asked for or expected from anyone when it comes to our experience with Max, is sympathy. As a poker player (recreationally, of course) I know that you can get a run of bad cards sometimes and that complaining doesn't help anything. You need to ride out that run, make a few timely bluffs, and wait for your luck to turn and the cards to start going your way. I've learned that life can deal you some bad hands sometimes, as well. Some people choose to walk away from the table and cash in their chips, others stick around to do the best they can with the hands they are dealt.
I'm no quitter, and neither is Kat. At least once a day, I'll see how beautiful he looks when he's asleep, or how happy he can be when he's playing, or how he's finally figured something out (unprompted in the bath yesterday, he counted from 1 to 10 and then backwards to 1 again -- I had no idea he knew how to do that!) and I'll remind myself, "He's worth it." He's worth the heartbreak, the tears, the financial burden. Every day, he'll do something to remind me of his potential and what a wonderful boy he can be.

But it's so hard. Just because I have no regrets and expect no sympathy about being the parent of an autistic child, that doesn't mean I would want anyone else to have to live through this. But more and more people are living through the struggle of autism, and the numbers are staggering: In a 1988 study on autism by Folstein & Rutter, they estimated 2 to 4 out of every 10,000 people were autistic. Now, according to "Autism Speaks" -- the organization behind Sunday's walk -- one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.
I don't know what's causing this drastic rise in autism diagnoses, but I do know that it scares the hell out of me. We need to come to terms with this and significantly raise awareness of and research toward this condition now. And that takes money.

On Sunday, June 20th, Kat and I will walk with some of our friends and family in support of Max and others like him. We'll walk in the hopes that Max will be one day able to have friends, play team sports, go on family vacations -- all the kid stuff that autism doesn't enable him to do right now. If you can donate to our cause, you will have our gratitude. If you can join us on Sunday's walk at Nathan Phillips Square in Toronto at 10am, you'll get a "Team Maxwell" t-shirt and a hug from the star of the show. He's an excellent hugger!
I don't know if autism can be cured, but I do know that we can't keep ignoring this growing problem the way we are as a society. Don't wait until you or somebody you care about has to go through what we're going through. Max and everyone like him deserves better.

Tuesday, June 15, 2010

I'm Good, What They Tell Ya.

Sometimes when you expect the best of people, they don't disappoint you. That hasn't always been the case on our journey navigating the Canadian healthcare and education systems to get Max the therapy and support he needs.

After a frustrating start to getting Max into a JK program where he could attend every morning (instead of the all day/alternating day schedule), I finally got some help. And by help, I mean the suggestion that I call to discuss Max's situation with the Superintendent of our area, Stuart Miller. While I wish I had been tipped off to the fact that I would need to escalate our case to Mr.Miller months ago, we won't go there because I'm busy being positive. I played telephone tag with Mr.Miller for a week. We finally connected and I once again told Max's story (let's start at the very beginning, it's a very good place to start...). I figured that most people are probably so irritated by the time they get to the point of needing to talk with the Superintendent about their concerns that they aren't very polite. It would be easy to get on the phone with this person and jump down his throat, but that's no way to get someone to help you, so I put on my "join Team Maxwell and be a part of his incredible success" hat and went from there.

Mr.Miller certainly gave me a lot of reasons on why he may not be able to do what I was asking. Having had a week of waiting to speak with him, I'd had some time to think up all of the logical responses to his potential roadblocks. And the whole time, I stayed calm, positive and friendly. I did suggest that the school board is legally obligated to go above and beyond for children with Autism, that they were required to come to the table with programming designed to meet Max's needs. Up to this point in trying to find a JK program for Max I had basically been told "this is how we do things, so either fit into or don't, but we aren't going to meet you half way". Mr.Miller told me he would explore what he could do to help and call me back in a few days. He even gave me his cell phone number so that we didn't have to continue playing phone tag.

When he called me back (yes, HE called me back as promised), he had a solution - Max could be transferred to a school in the area that was running full day JK programming which would mean he could attend every morning and then go to blueballoon for his IBI therapy in the afternoons. Max would be able to have a JK experience that would be consistent and really give him the social outlet he needs and really enjoys. I spoke with the Principal of the school yesterday (he's super friendly and was very interested in hearing about Max). I attended an open house tonight where I met the JK teachers. The school is small (perfect for Max) and the teachers didn't cringe when I told them about Max. That's a good start. Now more meetings, the Special Education Resource Teacher from THIS school observing Max at daycare, another case conference, and then hopefully a plan will be put in place well in advance of September. I'm trying not to count my chickens, but "peep peep".

Oh yeah...we're participating in the Walk For Autism in Toronto on Sunday. If you'd like to donate your coffee money to a great cause, we'd love for you to sponsor us!

Monday, June 14, 2010

Mabel Loves Max.

Okay folks, we're updating the ante for fundraising efforts for the Walk For Autism this Sunday (6 days to go!!). Mabel has thrown her hat in the ring and has donated a camp/school pack for us to raffle off. Here's the deal - if you sponsor Team Maxwell you will automatically be entered to win! And don't be saying "I don't have kids so I don't need it either" because everyone needs labels. Even Scott has labels (with soccer balls).Yesterday I had someone tell me that I should cool it on my fundraising efforts, that hitting my goal of $5000 for Team Maxwell was more about my ego than about raising money for Autism research, and that $100 here or there wasn't going to find a cure for Autism. Just so we're all clear, that is complete bullshit. It isn't about my ego, and it does matter. We should all care. We should all turn our pockets inside out for this cause. I don't say that because this is "my" cause. I say that because Autism is the biggest and fastest growing health crisis facing our children today.It's easy to look the other way if you don't have a child with Autism, or if you aren't close to someone with a child with Autism. On the outside, Max looks like a regular kid. If he's having a "good" day you might just think he's a quiet child who has some strange habits and doesn't really interact with other kids. But if he's having a hard day, then there is no doubt that he has huge needs. There is no doubt that we need to do more to support children with Autism, and their families, that we need to figure out what is causing Autism and how to best treat it. I implore you not to look the other way and shrug off Autism. You many not be affected by Autism currently, but one day you will be, the numbers guarantee it. 1 in 70 boys is now being diagnosed with Autism. That is mind blowing and terrifying. On a lighter note, if you donate, I'll give you a big hug and so will Max! Maybe I should have started with that!! Max and I give great hugs!

Sunday, June 13, 2010

Photo Essay: Cam's 1st Restaurant Experience.

As part of Familypalooza 2010, Grandma and Grandad hit town for a long weekend to see their grand kids (I think Scott and I are merely part of the deal at this point - we all know who are the favs here). On Saturday, while Max was in IBI therapy, Grandma, Grandad, Cam and I headed out to Chapters to do a little book shopping. Cam did her very best "little old lady in Florida" impression: Cam quickly discovered that Chapters not only sells books, but they also sell dolls! In this photo she is strategizing how to get Grandma to buy her ALL of the dollies in the store:She settled on the one with bright pink hair (to match my fleece zip-up top seen here). We had worked up an appetite with all that shopping so we decided it was time for lunch:The closest restaurant was Milestones which has been hit and miss in the past. In fairness, they do a pretty decent job on lunch (not so busy, good menu). Cam suddenly realized that Grandma was taking all sorts of pictures of her and she shook her finger, as if to say, "Grandma! No pictures at the table! It's rude, and I'm trying to colour!":
Grandma reminded Cam that she had just bought her a new dolly, (which we named "Miss Pink" a la Reservoir Dogs) and that she would take as many pictures as her heart desired. Fair enough:
When Cam's lunch came, she tried a french fry, but it had no ketchup. Bleh. Nothin' doin':
As you can see from Cam's face, the ketchup issue was quickly rectified, and Miss Pink got in on the lunch time action, which Cam thought was pretty silly:
Miss Pink got thirsty, so she had a sample of Cam's milk. Cam was kind of over it at this point:
This was my first experience eating in a restaurant with one of my kids since we took Max to Key West when he was just under 1 year old. Cam is a restaurant superstar, and I really enjoyed doing this with her and Grandma and Grandad. Next time I'll remember to bring her a bottle though, because around the time we were wrapping things up (and her nap time), she grew another head and they started spinning around in opposite directions. Kidding, but she did get a bit cranky, so we took a little walk while Grandma and Grandad got the cheque. Aces-Ten kiddo, Aces-Ten.