Wednesday, March 30, 2011

what i want you to know about max.

this is a freeze frame from a video I shot of Max playing outside.
One of the words I struggle with most when it comes to describing any person with Autism is "Autistic". Whenever possible, I describe Max as "having Autism". It is the difference of only a few letters, but I do my best not to say things like "Max is Autistic". The key differentiators for me is that while Max may be on the Autistic Spectrum, and he may have a moderate to severe case of Autism, HE is not Autism. So, to describe him as "Autistic" is to sum him up in one word, and he is so much more than that.

My friend Ellen, who writes Love That Max, a blog about her son, also named Max, who has Cerebral Palsy, summed up a similar feeling (but much more eloquently than I have here).  When she writes "My child with cerebral palsy is not defined by his disability. He is a cheerful, outgoing, spaghetti-eating, purple-loving kid who happens to have CP" she could be talking about my Max (minus the spaghetti and love of purple).

My Max, he loves tomatoes, waffles, and bouncing on his trampoline.  He has a devilish smile when he knows he is up to no good, and his favourite tv show is Elmo.  When he enters a room, he wants to be noticed and always announces himself with a huge grin.  He is strong as an ox and we suspect will easily clear 6 feet tall (and then some).  He is an amazing climber, loves to run, and would spend the entire day outside if we let him. 

Max also has Autism. All that means is that he has to work really hard to fit into a world that isn't set up to accommodate him.  I call him the "hardest working kid in Autism" because every day he works his butt off to learn, to master new skills, to figure out what makes the rest of us tick.  That's more than I can say for most people.  When is the last time that you had to try multiple times to make your needs known for something relatively simple like a glass of water, or an apple? Imagine having to exert that effort every time you opened your mouth.  Now you understand why we can't stop smiling when Max says things like "Max go downstairs" and "I want milk mommy". 

The point I am making, is that Max is more similar to your kid than he is different.  He calls out for his mommy and daddy when he falls and hurts himself.  He breaks his little sister's toys.  He likes to play in the dirt and get completely filthy.  He's a kid.  A kid with Autism.  But most of all, he's Max.

Tuesday, March 29, 2011

hot yoga at kula oakville.

I'm not much of a group exercise person.  I prefer to grunt and sweat and curse by my lonesome.  Over the course of my life, I have attended a total of four yoga classes.  The first was at a studio downtown, where it all seemed very competitive and new comers were looked at warily (lest you take a regular's favourite spot).  The last three classes were at a gym here in Oakville, and the vibe was all wrong.  Seems to me that vibe is fairly important when it comes to yoga. 

So, here I am, strangely having the urge to go do some yoga at an actual yoga studio, with other people (*gasp*). I put the word out on facebook to my friends, asking what they suggested.  My friend Julie suggested "kula" so I checked them out. Nice site, and on facebook and twitter as well! I love a business that gets social media, so I figured I'd check them out.  (Though, if the folks at kula are reading this I do have a bunch of suggestions regarding social media and would be happy to do an energy exchange for some classes!)

On Sunday I took a "restorative yoga" class which was really what I needed going into a new week.  I wasn't feeling quite ready to venture into hot yoga (or as I like to call it "fart" yoga due to its reputation for being  stinky).  As happy as I was with the restorative yoga, I really felt that I still needed to try to hot/fart yoga.  The stars aligned and I was able to go last night for a 60 minute power vinyasa class.

First off, it really is a bit stinky. But, you get used to it, after about 10 minutes.  I got to the class 15 minutes early and stretched out on my mat.  By the time the class started, I was already sweating.  The teacher, Becky started out by asking us if any of us were new, and much to my relief, I was not the only one.  I really liked her style.  She has a relaxed way about her, and a gentle sense of humour that really works.  Also, I don't think she sweats, which I find intriguing as it was dripping off me within 5 minutes of class starting. 

I am not normally someone who likes feeling hot, but I really enjoyed doing hot yoga.  There is something about exercising in close quarters with other people who are working through their own stuff that is powerful.  Nobody cared what I was doing, or how good or bad I was.  There were all shapes and sizes and a wide range of skill levels.  Seriously, there was an older guy in front of me that blew my mind with the stuff he could do, and a complete beginner who had never done yoga behind me.  After doing P90X yoga for the last 3 months, this was a terrific change.  What is cool is that I was actually decent and felt like I kept up with the class, so thanks Tony, for that.  But - it was way more fun and challenging than the Yoga X dvd, so if you are doing P90X and sick of that workout, I recommend you go check out a real class as it is a better experience overall.  Now I just have to figure out when I can squeeze another class in! I think I may have a new addiction.

Monday, March 28, 2011

cam and the guys.

will the village stand to support this child?

This is a special request calling on all those who can put aside some time to attend a hearing at the College of Psychologists in Toronto on April 4th for a child that is being discharged from receiving funding for treatment. The details are:

Date: April 4th 2011
Time: 10a.m. until noon (12)
Location: 151 Bloor Street West, 9th Floor, Toronto, Ontario

From Norrah W.:
This is an important case, because the college was simply going to dismiss it. It is my understanding that after appeal it has gone above the college to the Regulated Health Professions Board. The family is coming forward and sharing all the info regarding the case, and pleading for as many as possible to attend the hearing. This is an opportunity to show everyone; government, media and professionals that we still stand united in our advocacy and will not settle on second rate services and funding for our kids.

This is also an ELECTION year and this isn't just about autism, this is about people with disabilities being dismissed, ignored, discouraged from taking action by proper bodies to protect their well being and public interest. THAT is something that binds the ENTIRE disability community and we and the care takers of that community have enough numbers in Ontario to COMPLETELY decide the outcome of the next

So I ask who is showing up for two small hours and if you can't do you have media contacts have you contacted them?

Historically the village has not been large in numbers so send a family member if you can't go, a therapist, a friend close to your family who knows your beautiful child, if you want to sit and be passive then truthfully the worst will continue to happen to our children and people with disabilities in general. We are the bottom of the pole, yet largest in numbers when you factor in five of our care givers, just five votes for each person with a disability and we have a new government.

Friday, March 25, 2011

the face of autism: part 2.

A few years ago I created a video about Max called "The Face of Autism: It May Surprise You". This is the update!

Wednesday, March 23, 2011

week 13 of p90x.

my workout set up - Tony on the laptop with the sun lamp my mom gave me blasting!
Officially speaking, Tony Horton and P90X entered my life on December 26th (2010). When I first looked at the 13 week program, empty worksheets and stack of 12 cds I felt intimidated and nervous (and secretly wondered "who am I kidding with this?").  Friends of mine had tried it and failed. But one friend had managed to completed the program and felt and looked terrific after.

The first week of P90X was hard. But, there was something about this Tony guy that kept me coming back for more.  Plus, as sore as I was, I felt hyped about the program (big time).  The first 4 weeks were actually easy in the sense that staying motivated wasn't an issue in the least.  I remember raving to my friend who had done P90X about the changes I was seeing and being told "just wait - you are still early in the game".

I kept on trucking, day in, day out.  The only thing that temporarily derailed me was getting the flu.  I got back on track though (wow was that hard).  And now fast forward to March 23rd and I only have 5 more workouts to go until I complete the program.  It already feels like a huge achievement!  Now, I know showing off before and after pictures is a big part of this whole thing, but...well, I'm not sure if I'm going to do it.  I've had some feedback as of late that I have been showing off my physique too much, so unless there is a huge outcry (hah!) I'm going to lay off the photos of me in my workout wear.

Apparently I am supposed to take 2 weeks off after I finish P90X before I jump into my next program.  I'm not sure I'll be able to sit still that long, but I'll give it a try (and likely check out the local yoga studio "kula" to make sure I stay limber).  I'm jumping into a hard core cardio interval program next that REALLY makes me nervous.  But word has it that if I can do P90X, I can do anything.  Guess we'll see about that!

Monday, March 21, 2011

mental health monday: girls night out.

The thing I love most about my friends is that when I arrived 45 minutes late to our girls night out/birthday celebration on Saturday night, they had already polished off a bottle of wine. In fact, they were sitting around my friend Raye's kitchen table, discussing one of our husbands (or husbands to be), the better part of the hors d'oeuvres polished off. These are not women you keep waiting.

I sat down, quickly got caught up on the conversation and relaxed into a lovely glass of wine.  The last time I saw all of these ladies was Cathy's Epic Wedding.  I am actually shocked that we managed to pull off a night where the four of us were free (of kids and spouses).  The next time we are all together will probably be Raye's wedding in September.  After (a lot) more wine, I decided that we better go out for dinner or else I was going to end up under the table by 8pm.  We found an empty Thai food restaurant and ordered a mess of food.  I whipped my camera out and took pictures of everyone, which they really appreciated.  (Hey, at least I did it before the food came.)  I am fairly certain that our conversation scandalized our waitress and the patrons sitting behind us.  I suppose the words "speculum" and "cowboy porn" are a bit titilating (more on the cowboy porn in another blog post).

We wrapped the evening up with 4 pints of gelato from Ed's Real Scoop, a bottle of champagne, and more wine (I am not divulging how much).  We laughed, cried, gasped and laughed some more. Of course, since we were in absolutely no condition to locomote anywhere, we crashed at Raye's (who has a lovely pullout couch if you are ever in the area).  But I will warn you, if you take cream and sugar in your coffee, bring your own. 
Max, me, Stephanie, Cathy, Raye and Tanya the summer of 2007

Wednesday, March 16, 2011

2010 autism therapy costs: $65,575.50

This may come as a surprise, but I had no idea how much Max's therapy bills would total for 2010. I figured it was a lot, based solely on the fact that Scott and I have decent paying jobs yet still manage to have bank account balances starting with a "-" sign.  This year's grand total of $65,575.50 is a lot more than 2009's Autism therapy total bill of $52,041.  The reason for the increase is that when Max started IBI therapy in 2009 it took about 6 months for him to ramp up to full time IBI hours (21 per week).   

You may be wondering, how the heck do you rack up over $65,000 in therapy bills for one kid?  Max receives speech therapy, occupational therapy, music therapy, and behavioural therapy.  Add to that psychological assessments and senior therapist planning hours and you land north of $65k.  Interestingly enough, the IBI funding we will be getting through Erinoak for Max is $40,000 per year, leaving us to cover the difference.
2010 Walk Now For Autism in Toronto
Because of Max's intensive early intervention he has experienced incredible progress.  He is starting to use language expressively (including a spontaneous 7 word sentence just this morning).  He is learning how to play with his sister (I dare say they have a fairly typical sibling relationship).  Max is starting to follow instructions and has shown he knows how to do things like tease and manipulate when it suits him.  It is all very exciting and gives us tremendous hope for his future development. 

But there is so much more work that needs to be done.  I would be a bold face liar if I told you that Max will not continue to need intensive therapy for years and years to come.  Because we have exhausted all of our personal funding resources, we have cut back on things like Music therapy (Max's favourite) and now have Occupational therapy only to address specific priority issues so that we can ensure he gets enough Speech therapy and Behaviour therapy.  If I had the means, I would spend $100,000  a year on therapy for Max.  But I don't, so we do our best as a family to get Max the essentials.  Also, without the generous support of all of our family, we would not be in a position to get Max this life saving therapy.
2009 Walk Now For Autism in Toronto
This year we are helping raise money for both National Service Dogs and Autism Speaks.  The money we raise for National Service Dogs will be used to provide direct funding for Max's own service dog (who will be joining our family in Fall 2012).  The money we raise for Autism Speaks will go towards supporting research, family services, public awareness and advocacy.  Thanks to our friends, family, and readers we have raised almost $10,000 through the Walk Now For Autism events in 2009 and 2010.  I hope when I reach out for support this year you will be feeling just as generous! Remember - it isn't only for Max, but the 1 in 70 boys being diagnosed with Autism. 

Tuesday, March 15, 2011

giving thanks: my little miracles.

With everything going on in the world right now, it is impossible not to feel incredibly blessed. Certainly life is not perfect (by a long shot), but we have so much. So, so much.
I thought I told you no pictures mommy.
Who is this huge boy?
omg does she ever look like her dad.
Seriously mom, more pictures? 

You can take pictures of me mommy!!
omg enough!
we are going to deny this ever happened.

travel tuesday: traveling to japan in my heart.

photo credit:

As we take in the images of the tsunami washing over the coast of Japan, it seems abstract. This could not possibly be the same place that Global TravelingMom visited just a few months ago. The news anchor speaks about the thousands of people who live in the village that has been swept away in mere seconds. Surely, you think, everyone got out in time and reached safety. To imagine anything else is horrifying.

...Read the rest of this post over at

Monday, March 14, 2011

mental health monday: dance the night away with janet jackson.

When you have a child with Autism, going out on "dates" becomes an infrequent event. There are only a few people that Max is comfortable with, and even then he can be a lot to manage. Scott's parents (the famous No-Nonsense Nana and Super Bumpa) are our #1 go-to sitters for the kids. They help us out multiple times a day during the work week, which allows us to both have jobs. Because of this, we are hesitant to ask for additional support on the weekends as we are worried about wearing them out. We save the requests for extra weekend support for big deals.

An example of a "big deal" is the Janet Jackson's #1's tour.  Scott bought us tickets for her March 13th show in Toronto for Valentine's Day (not a Valentine's Day present, but good timing nonetheless).  I hadn't been to a concert since I saw Norah Jones last year with my concert boyfriend Chris (I also saw John Mayer with him on Valentine's Day last year).  Being a huge Janet Jackson fan (I even own a copy of Damita Jo), Scott hit a home run with these tickets.  The only concert that would be on equal footing with Janet is if The Brand New Heavies came to town (unlikely as they rarely leave Europe). 

The concert was terrific.  The Sony Centre only seats 3000, so the venue was much more intimate than seeing a show at the ACC.  Janet sang all of her #1 singles, so you know everyone was singing along to every song (myself included).  I love the energy that erupts into applause as people figure out what song she is transitioning to and start to cheer in anticipation of having her perform a favourite.  Also, she looked AMAZING, sounded terrific, and can still dance like nobody's business.  I danced for the entire show, grinning from ear to ear.  Every once in a while I looked over at Scott, who was also having a terrific time (but I think he enjoyed seeing me dancing and smiling more than anything else). 

When we got home, we found out that Max had given Nana and Bumpa a taste of our morning routine, which we felt badly about.  It's one thing for us to deal with it, but we don't wish it on anyone else.  They were good sports about it, but we could tell it had upset them.  We had such a good time, I hope that as Max grows up it gets easier for us to go out together.  It is so important for our relationship and we need to figure out ways to do it more often. 

Sunday, March 13, 2011

new floors: the perks of poop.

Last month I blogged about a particular challenge we are working through with Max, which causes a lot of stress in our home. It's a subject that is tough for me, but I felt that it was important to write about it regardless.

What I didn't mention in that post was the super "ugly" cry I had one particular morning as a scrubbed feces out of Max's bedroom carpet. Something inside me broke. I could not start my day this way any more. Of course, it's all well and good for me to say that, but just because I don't want to do something doesn't change our reality. Scott and I made the decision to get laminate flooring put in so that at the very least, we could keep Max's room sanitary. The carpet upstairs was the original carpet that came with the home (25 years old) so it really was time to do something either way.

Lucky for us, there are some good financing options available.  The installers did the entire job (3 bedrooms and a hallway) in one day (a true miracle).  Of course, Max tested it fully the next morning by not only pooping on it, but upping the ante and peeing on the floor as well.  Nice.  The beauty of laminate is it can take one heck of a beating and is easy to clean.  Plus, I've been lobbying for new flooring for a while, so if the only perk of all this poop is that the house gets a much needed upgrade, than I can accept that.

Saturday, March 12, 2011

summer to do list.

tail end of dreary winter + rain and gloom of early spring = 1 depressed katrina.

This is the the toughest part of the year for me.  The skies are constantly grey.  It's still cold out.  Then it's raining. Then it's snowing.  The ground gets mushy and muddy.  The kids are desperate to get outside and I'm desperate for them to get out from under foot.

That's when the home improvement projects start percolating in the back of my head.

  • The upstairs needs to be completely repainted!
  • I should install that light fixture I bought 3 years ago
  • The tap in the main bathroom needs to be replaced
  • New smoke detectors throughout the house?!
  • This laundry room is a disaster
  • Ooo.... look at this bedding at west elm...
  • I should sew new curtains for the bedroom to match that bedding (that I don't actually have) - something cream coloured with blackout fabric on the back
  • and the back deck needs to be stained - or maybe I'll just rip it out and build a new one?

I wonder if I'm the only person who has a summer to do list that is just a little to long to actually cross everything off it?  I think half of the items on this year's list were on last year's list as well.

Wednesday, March 09, 2011

p90x: week 11 day 1

Three more weeks of P90X to go! I'd be a liar if I said at this point I'm still jumping up and down every day to workout because 13 weeks is a bit of a haul.  But I'm too damn stubborn to stop this far in and I'm having some good results.  I just ordered the Insanity workout which I plan to start in mid April.  I'll post before and after pics from day 1 to day 90 when I wrap this up at the end of the month.

Tuesday, March 08, 2011

travel tuesday: making disney fun for your child with autism.

This February I had the opportunity to visit Disney World for a few days without my kids. Because I view everything through the lens of "how would my 4 year old with Autism cope here?" I asked a lot of questions and made many observations while staying at the park. While my son is probably a few years away from being ready to visit, I learned a lot about how to make Disney a fun experience for families with children with Autism.

Monday, March 07, 2011

max's student safety plan for junior kindergarten.

There isn't a day that goes by that doesn't test your inner metal when you have a child with Autism. It may be something relatively small, like being told Max wiped his nose with his hand 198 times during his ABA session, which is why his face is raw. Sometimes it is much worse, like being called to take Max to the ER because his elbow has been dislocated at school. Or maybe it's the sharp pain in your heart when you explain to the flooring sales guy that the reason you are putting laminate in your son's bedroom is that he defecates on his bedroom floor every morning.  There are days when I take it all in stride and these things don't bother me so much.  But there are also days when something that was supposed to be innocent (like checking Max's school backpack) ambushes me with a sneak attack. 

This morning, as I was putting Max's lunch and snacks in his bag for school, I pulled out the communication book that his teacher uses to tell me how his day has gone.  Apparently on Friday Max took all his clothes off from the waist down to express his displeasure with something.  Huh. That is not what did me in.  Tucked in to the yellow communication book was a 5 page document titled "Student Safety Plan". 

The document states:
  • developed in response to risk of injury to the student and others
  • not a plan created to remediate behaviour
  • student must have a Behaviour Plan to support Safety Plan
  • Created in consultation with the 'CORE TEAM' at school level
It goes on to list risk categories like "Physical Aggression" and "Putting Self in danger" and triggers such as "noise, confusion regarding duration of activities, task demands, and transitions", followed by 3 pages of process documentation on what is to happen if an escalating behaviour occurs. It is all so black and white.

There is something about the documentation around Max's Autism that I find quite difficult.  The words get blurry, and I often have to set them aside for review at a later time.  I have read some devastating reports that have left me sitting in my car sobbing, feeling hopeless.  The reports are absolutely necessary to get Max what he needs, be it funding, or fulfilling whatever requirements of paperwork hoops we have to jump through. 
What the reports miss completely is that the very reason for their existence, the true core of the documentation, is a 4 year old little boy.  A beautiful child with a smile that melts your heart, and eyes that touch your soul.  A boy named Max who works so very hard to fit into a world that he does not understand and for the most part, does not understand or accommodate him. 

I get that the reports and documentation  are very much necessary.  But I wish they could somehow have some humanity and acknowledge that after all is said and done, there is a child involved.

Friday, March 04, 2011

fighting depression with p90x.

Depression and I go way back, but it wasn’t until college that I started taking medication to treat it. Thus began my ride on the prescription drug roller coaster. People who don’t understand depression would say things like “you should exercise, you’ll feel better”. I resented those people and thought “yeah right, a run around the block will cure everything”. I could barely get out of bed, let alone go to the gym.

...Read the rest of this article on Diets in

Thursday, March 03, 2011

who you callin' retard?

Retard.  It's one helluva word.  It no longer means "to be delayed" or "to make slow; delay the development or progress of (an action, process, etc.); hinder or impede".  It has essentially turned into the "n" word for the special needs community.  I almost never hear the word, and I wonder if those around me choose to self-edit because they know I will call them on using such incredibly ignorant and offensive language.  But I see it in print on a daily basis.  Worse, I see my "friends" use the word as a throw away remark, a casual utterance that is completely unnecessary to communicate their points.  They use it on facebook and they use it on twitter. 

It bothers me more when the word is used casually instead of as an attack.  If you call my son a retard, I can take you on directly, because he is most certainly not a retard, nor will I accept you labelling him (or anyone) in such a derogatory manner.  It's the tag-ons that I find most challenging.  The "omg that's so retarded!" comments.  When I see this type of language, it knocks the wind out of me.  I typically comment back and say "not a good word - please use language that actually describes what you are trying to articulate like "omg that's just not right" instead of insulting a group of individuals who deserve to be embraced not maligned".  

My friend Ellen over at Love That Max wrote a brilliant post about this subject yesterday, as did Tanis (who I have not yet met, but hope to) at Red Neck Mommy.  There is also a terrific site called The Social Challenge that highlights all tweets using the word "retard" and has a program set up where you can respond to these tweets with an informative response without using your personal twitter handle.  I encourage you to check all of these sites out.  If you are currently a casual "r" word user they will provide you with additional insight as to why you should delete this word from your vocabulary. 

No person deserves to be referred to as "retard".  It is incredibly hurtful, not only to the person it is directed at, but the people who love that person. I challenge you to challenge yourself and others.  Let's create a community based on equality.

Wednesday, March 02, 2011

anti-depression medication – when is enough, enough?

I paid my doctor a visit yesterday (yes – the super attractive one who finds me terribly funny and thinks I’m lovely). The reason for my visit was two-fold (because I need more than one health issue to actually get off my ass and book an appointment with him). After he made me a referral for botox (I kid), I told him I wanted to discuss my medication with him. Over the past few months I have found that I’ve been feeling apathetic about a lot of things. It has been really hard to get myself moving in the morning and a BIG effort to get motivated to do anything that isn’t P90X or blog related. I asked him if he thought we needed to adjust my medication, or if I should just ride it out and see if it got better as the things I have been struggling with improve.

He asked me some probing questions (smirk) and he came to the conclusion that we probably shouldn’t change up my meds. Since we are at the tail end of winter, his thinking was that the change in the weather will probably help and the things I am feeling apathetic towards are likely to change in the near future as well.  He also recommended getting a sun lamp (which is unlikely because they are expensive).  Instead, I'm going to open the curtains and blinds and go for a walk on my lunch to breathe in some fresh air and catch some rays. And hey, while I may not have gotten any new meds, I certainly got some eye candy.

never let your frog outdress you.

I took this picture last week in Hollywood Studios at Disney World
How it is already March, I have no idea.  It's still freezing cold out and snowing, so my head is still in February.  I'm ready for sandal weather.  I'm ready for gardening.  Most of all, I'm ready for sunlight! 

I've been meaning to post an update on some of the other projects I have on the go right now. 

I'm still writing for  Check out my most recent post:
10 Reasons Why Every Mom Should Vacation Alone

I'm also a contributor for the new site Mommy Niri Cares.  Check out my first post:
Finding the Autism Community Through the Internet

And one more thing...Jennifer and I just launched an Urban Quilting Blog called Sew Sew Def! Check out my latest post over there:
Mill House Inn by Fig Tree Jelly Roll Quilt - A Work In Progress

I have a few other projects in the works that I'll link to once they are up! It's a very exciting times for me!