clever carter: a way to introduce your autistic child to his classmates.

Every year as September rolls around, parents of children with autism get anxious about how their child will handle the transition back into school. Will you have a teacher who is willing to work with you? Will the appropriate level of support be provided for your child? Will the kids be understanding and inclusive? It’s a lot to process and that’s without taking into consideration the stress that your child will be under dealing with the big change from a summer schedule to heading back to school.

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mothering a child with autism: the loneliest job in the world.

This past week there was an article in the Huffington Post about special needs parenting that truly hit home. Reading it, I thought to myself "Wow, I'm not the only one who feels all these things". Lately my days are more down than up, I'm a ball of stress. My stomach hurts, my skin is breaking out and the only sleep I get is the well medicated kind. Add to that, I seem to be spending most of my days on the phone, trying to explain to yet another bureaucrat that I understood their need to maintain numbers and limits and respect geographical boundaries, but they need to come to terms with the fact that kids with special needs don't fit into this jello mould they like to pour everyone into. And that's okay - the rules are there so that exceptions can be made to support the children who need special consideration. To which I'm politely told "no, we will not be making room for Max" (at the school he has attended for the past two years).

I feel myself starting to become unhinged. Because, as Max's main advocate and support, if I can't fix these relatively small problems for him, what good am I? And on top of that, if I don't do it, who is going to fight this hard for him? Clearly I can't trust others to prioritize his needs or even, quite frankly, do the right thing. There is so little I can control on this autism journey. When the few things I should be able to navigate go sideways I feel like I'm failing him. I want so badly for him to have every opportunity available to him to prosper and grow. When people say "no" to Max, I feel like I haven't done a good enough job telling them about Max. I haven't helped them fall in love with him. Ultimately it's their loss, right?

max update.

As I put the final touches on my presentation for the International Conference of Motherhood Activism, Advocacy, Agency tomorrow afternoon, and reflect back on our journey so far, I can't help but feel extremely blessed and fortunate. So many people have been incredibly supportive of us - we really could not have made it this far without you.

This is a short video of Max that I will be including in my presentation. Compare it to the video of him 21 months ago and you can see just how much progress he has had (and how much he has grown!).

May 2011:




August 2009:

sharing the good, the bad, and the ugly of autism through social media to effectively influence and advocate.

Next week I will be speaking at the International Conference of Motherhood Activism, Advocacy, Agency in Toronto. As I put together my speaking notes, I have begun to realize that the person I define myself as, or rather, my self-identity, is not an entirely accurate reflection of reality.  Am I an advocate or an activist? Am I selling myself short? Or perhaps it is my hesitancy to be involved in the Autism community that is so divided and critical of mothers who "only" advocate and don't do enough for "the cause" that has kept me in the corner, tongue firmly planted in cheek.  Regardless, I am certainly not the person I was when I set out on this journey of motherhood.

As I run down the skills I have had to develop to effectively advocate for Max, I shake my head and have to chuckle. I've always been outspoken (you are completely shocked, I know). But I have also learned how to manage relationships and to figure out ways to get the most out of every person who can help Max and our family. I hope to inspire people to go above and beyond for Max and to expand their thinking when it comes to working with children with Autism. I was even so bold as to inform Max's school principal that he was lucky I was the first parent to enrol a child with Autism in Junior Kindergarten in his school. It has been a challenging year for both Max's teachers, Max, and me, but I sincerely believe we are all the better for it. Future parents enrolling their children with Autism at this school will benefit from Max laying the groundwork and me setting high expectations.

All I've ever wanted was to help Max reach his full potential and give him the tools he needs to live a happy and fulfilled life. Everything else has taken a backseat to this goal, including friendships, career and my own personal needs. As mothers, it is assumed that we will do anything for our children. Mothers of children with Autism do so much more than you can imagine, yet we still beat ourselves up at the end of the day for not doing enough. The Autism community then piles on by telling those of us who are mere "advocates" that we are letting down "the cause".  Imagine if someone who was attacked was told they were letting down those who will be attacked in the future because she has not become a crusader for tougher laws on crime.  It would never happen - but we mothers of children with Autism, who already struggle with more than you could possibly know, we are fair game.

Food for thought for sure.

For those of you who are able, I hope you attend the conference. There are so many interesting speakers and panels packed into 3 days, you won't know where to start! Email me if you are attending so we can meet up for a "beverage".

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!

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!

The Best Gift You Could Give Max.

Today is Max's 4th Birthday. It's also Scott's 29th birthday (for the 7th time). So, happy birthday to my two favourite guys!

As you all know, my son Max has Autism. You may not know that 1 in every 110 children and 1 in 70 boys is now being diagnosed with Autism Spectrum Disorder. 20 years ago it was 1 in 10,000. Scary shit, I know (first hand). You may have a child with Autism. Or a family member or close friend. Maybe there is a kid on your block with Autism. Heck, you may not know anyone with Autism but be deathly afraid of one day having a child of your own who ends up being diagnosed with this devastating disorder. I know I was.

Scott, myself, and many of our family and friends participated in the Toronto Autism Speaks Walk for Autism last year and were thrilled to raise over $5000 to support research into the causes, prevention, treatments, and cure for Autism. We were blown away by how generous our friends, family, coworkers and readers were. We're hoping you'll support us again this year.

Trust me I know times are tight for everyone. But I'm still going to ask you to support us if you can. $5. $10 or $20. Whatever you can spare - it all makes a difference and we appreciate every single penny.

I'm going to up the ante this year. If you donate $50 or more, I will send you one of our walk t-shirts. And if you join our team and walk with us, you'll get one automatically, regardless of how much you raise (we would love to have a sea of green shirts at this year's walk!!). While I'm at it, let me thank the talented Christopherr Mendoza of Designmojo who donated his time and talent to design this year's (and last year's!!) shirt for us. We will wear them proudly.

The best birthday gift you could give Max is to support him by sponsoring Team Maxwell in the Autism Speaks Toronto Walk For Autism. Thank you in advance! Remember - every penny counts!

No Cure.

There is no cure for Autism. I often hear parents describe their child as "cured" or "recovered" from Autism, and I think to myself "I pray that will be me one day, that I will be able to say Max is cured or fully recovered". But truly, there is no cure, there are only best outcomes. Do I think Max will be a best outcome case? Absolutely. I am only now starting to accept that he will never be cured.
What does this mean? It means that I am coming to terms with what Autism is, what it means to Max and our family. It means that I am reassessing all of the relationships in my life, observing other people's relationships, and trying to determine what a normal relationships is.  I'm asking myself questions like "are normal relationships the be all and end all?" and having internal debates about the assumptions I make about what I deem necessary to live a happy, fulfilled life.  Just because I think one needs X, Y, and Z to be happy doesn't make it so.  I only think that because it is all I know.  Who am I to judge what makes a good relationship?  Maybe it is okay to have a relationship 100% based on mutual love of a certain topic, or relationships where one person has the understanding that the other is not able to have a fully functioning emotional connection with them, and accepts it for what it is and for what that person is able to give.  All along I have been thinking that Max needs to be able to experience life based on my "ideal scenario".  It probably isn't going to happen, and that is my problem, not his.  

I really have no idea what the future holds.  I certainly have high hopes, and I dream of Max being happy and fulfilled  (whatever that looks like).  I don't look at video of Autistic adults on youtube as an indicator of where we are going, because I don't think they are an accurate prediction of what Max will be like as an adult. The therapy Max is receiving is ground breaking, and he has received early intervention.  I know that the progress will continue in tiny incremental steps, and I need to be patient.  There is no magic cure, only hard work and a tonne of perseverance.  All that to get to a best outcome.

Walk Now For Autism: Mabel's Labels Camp Pack Winners!

As promised, Cameron selected our 2 winners for the Mabel's Labels Camp Packs. Watch the video to see if you won!

Walk Now For Autism: Video Blog.

Check out Team Maxwell's mad walking skillz on the Walk Now For Autism course in Toronto yesterday.

Walk Now For Autism: Photo Essay.

We got up at 5:30am this morning to get ready for the big day. Sunday is usually the day we lounge around in our pajamas until...uh...we get into fresh pajamas to go to bed, so the kids were a little confused as to why we were rushing around, getting them dressed and out the door, all before 8am. Max kept his cool and enjoyed the drive into the T.dot (though he does look a little bleary eyed). Cameron decided we were all nuts and caught up on her cutie sleep. Scott did not enjoy me taking his picture for my blog, but he was a good sport.
We met everyone at Timothy's at Queen and Bay for 9am. Nana and Cameron held down the fort while Scott chased Max around and I got everyone their t-shirts.
My oldest friend (we've known each other since kindergarten!), Elizabeth shows off her Team Maxwell t-shirt, while enjoying some much needed java.
Scott manages to catch Max during one of his laps of the coffee shop to show off his T-shirt. Pretty strong likeness, eh?
Elizabeth and me mugging for the camera in our Team Maxwell t-shirts.
Brandie and her boyfriend Simone joined us for the walk as well. I think they look really good in their Team Maxwell shirts! It was cold this morning, so a lot of us wore them over long sleeve shirts.
Christine brought the Team Maxwell mascot, her chihuahua "Max". And yes, that is his real name. And yes, this has been the source of many laughs in our house.
Around 9am, Cameron started to get a bit annoyed with sitting around and waiting. She thought it was time to go and register for the walk. Amazing what an effective communicating tool screaming is.
We let Max walk up to Nathan Phillips Square - he really enjoyed walking with his dad, but thought I was cramping his style with all the pictures.
My second oldest friend (we've known each other since Grade 1), Athena, brought her entire family to walk under the Team Maxwell banner. Those are some cute kids, eh?
Bumpa Dave and Grandpa Ole showing of their t-shirts.
The Team Maxwell mascot, Max, getting some love.
Omg! The walk is starting! Let's gooooooooooooo!!
Being the class act we are, Team Maxwell took a short cut out of the square and skipped the big wait to go through the "official" walk entryway. We tried to look inconspicuous as we cut in at the front of the procession.
Along the walk route there were various musical acts to keep us pumped. We also got some cheers for our t-shirts.
Some of the younger members of Team Maxwell got pooped near the end of the walk, so we cut through the Eaton Centre instead of taking the official course. Yeah, we are classy like that. Elizabeth took the opportunity to snap an official Team Maxwell photograph for us. Apparently Scott thought this was a race, so he entered the square singing the theme song to "Rocky" at the top of his lungs. Max tried not to be too embarrassed.
There were a lot of cool team t-shirts at the walk. I think ours was the best (of course), though I think next year I'll go with a colour other than white. Perhaps lime green or bright yellow will stand out more in the crowd...
Thanks to our friends, family, and faithful readers, Scott and I each raised over $1000 for the walk, which meant we were recognized in the Grand Club. We thought this was pretty cool, and we made sure to get a picture of our names in lights.

And of course, we waited too long for the official family photo. Cameron went home early with her grandparents, and by 11:15am, Max was done. Good times.
I don't think this day could have gone any better. The rain held off, the kids were really well behaved, everyone who said they were going to turn up found us, and we got to do something really positive for Max. Next year I'll start my planning a little earlier than, say, 2 weeks before the walk. But I think for 2 weeks of fundraising and planning, we did fantastic!

Stay tuned for the Mabel's Labels Camp Pack draw results and video footage of the walk. Thank you again to everyone who donated - you have officially blown my mind!