an unlikely autism advocate: actress daryl hannah.

Like many people, I was shocked when I learned that Daryl Hannah had been diagnosed with autism as a child. It was hard for me to believe that this gorgeous, successful actress had kept this secret for 52 years. As a mother of a 7-year-old with autism, I was stunned -- but that surprise turned into embarrassment when I considered how hard I've fought to educate people that we shouldn't limit our expectations of what autistic people can achieve.

...Read more on iVillage.ca

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.

...Read more on iVillage.ca

an open letter to "one pissed off mother".

Karla Begley is a woman with multiple sclerosis who has a 13-year-old son named Maxwell who has autism. She often brings Maxwell to her mother's house in Newcastle, Ontario for sleepovers because Karla needs help taking care of him and because he loves watching the movie "Grease" with his grandmother. Recently, Maxwell's grandmother received this hateful letter in the mail explaining in great detail why Maxwell isn't welcome in that neighbourhood.

The letter-writer -- who signed the missive as "One pissed off mother" -- was brazen enough to suggest that Maxwell should be euthanized, but lacked the courage to state her real name. I have never lacked the courage to put my name behind anything I write or say, and that will not change in this hypothetical response if I was mailed this letter about my seven-year-old son with autism -- who is coincidentally also named Maxwell.

Dear “One pissed off mother”,

Your letter has left me feeling terribly sad. Not for me, or for my son Maxwell -- that’s his name by the way, not “retard” or “wild animal kid” -- but for you. In reality, I will never share your thoughts with my son, because he is a happy child who brings an incredible amount of joy to those who know him. And while your words were very hurtful to read, the support I receive from my family, friends, and my more understanding neighbours lifts me up on a daily basis and outweighs anything you could ever say to me.

... Read my full response on iVillage.ca

a night of music and magic at toronto's molson canadian amphitheatre.

As moms we’ve all encountered this — that feeling like we might explode if we don’t get away from our children. At least, I’m assuming that’s the case (please tell me I’m not alone in this). After a particularly stressful few weeks with my crew, I was ready for a night out, so getting invited by a friend to join him at a John Mayer concert was just what I needed to relax and recharge.

...Read more on TravelingMom.com

the art of the 24-hour vacation.

Remember back in the day – before you had kids – when you could go away for a week or two, and all you had to worry about was finding someone to water your plants and feed your cat? Those days are a distant memory for parents. Going away without your children for any stretch of time is a challenge. For those of us with a child with special needs, it is nearly impossible. This is where the art of the 24-hour vacation comes in.


...Read more on Travelingmom.com

the importance of making time for yourself.

Moms are good at a lot of things, but making time for themselves isn’t typically one of them. Think about it -- when is the last time you prioritized yourself over your family? Is carving out an afternoon for yourself something you do on a regular basis? It’s easy to get burnt out and not even know it. Add a special needs child to the mix and you are even more at risk for increased stress, depression and exhaustion. Perhaps it’s time to rethink making time for ourselves. After all, when mom isn’t happy, nobody is.

...Read more on TravelingMom.com

iVillage Canada Special Needs Parenting Google Hangout.

As part of the Special Needs Parenting Panel on iVillage Canada, I was asked to join Ijeoma Ross and Lisa Thornbury to discuss the challenges and joys of raising a child with special needs. From the practical (juggling medication and therapy schedules) to the emotional (making time for everyone else), we discussed what it's like to live with our special kids (and had a few laughs).

iVillage Canada Special Needs Parenting Panel.

This week I am participating on a Special Needs Parenting panel on iVillage Canada. Parenting and pregnancy author Ann Douglas is heading up the panel, along with blogger Lisa Thornbury, journalist Ijoema Ross, and myself as we share the joys, sorrows and essential advice on raising special kids. I hope you'll check it out.


...Read more on iVillage Canada

talent hounds segment of max and chester.

Max and Chester were featured in a wonderful short film about dogs helping people living with Autism featuring National Service Dogs and our family with NSD Chester our "healing balm". These dogs can make such a difference in lives. The film is from the documentary Talent Hounds that airs on the Pet Network. Check out www.nsd.on.ca and www.talenthounds.ca.

what world autism awareness day means to me.

My son Max was officially diagnosed with Autism on December 2, 2008. He was 2.5 years old. Press fast forward to April 2, 2013 and he is turning seven in just a few weeks. The intense sadness of the initial diagnosis has faded, and I have started to come to terms with what it is to have a child with Autism. I could spin a happy tale of how much I've learned by having a son with special needs, and how I'm a better person for it. And sunshine! And roses! Or, I could dwell on how incredibly hard it is to parent a little boy who has faced challenges at every turn. I could sing a song of woe outlining the heartbreak, tears, exhaustion and anxiety that seem imbedded in my very being. In truth, it's a little of column A and a little of column B, and each day I do a balancing act between the two.

...Read more on iVillage.ca

in other news, i despise winter.

I hate winter. Really, I look forward to a time in my life when I can up and leave Canada from December to March. This particular winter has been a doozy, with me getting a nasty chest infection, followed by spending January in bed due to C. difficile. Yeah, gross. But, in between all that nastiness, some good stuff happened.

My friend Alana got married, and I was her maid-of-honour:

My mom came for Christmas, and she and my little brother made a kick-ass Christmas dinner.

We got a new couch. The kids like it.

Chester, Max's Autism Service Dog, settled right in.

We participated in a documentary about working dogs that will be airing next month.

Scott and I got away for a night without the kids for the first time in four years. We had fun.

Cammie and I went on a visit to visit Jennifer and baby Milo in Ottawa.
So long Winter. You won't be missed.

an autism service dog for max.

Chester, an autism service dog from National Service Dogs (NSD), joined our family on October 26th. We applied to NSD for an autism service dog two years ago. While the wait list was lengthy (I think it's down to 18 months now), at the time, Max was only 4 years old. We weren't ready for a dog quite yet - I figured that when Max was 6 years old, that would be about the right age. During our wait, Milk-Bone generously sponsored Max's service dog for $18,000. NSD also raised money for Max's service dog through their annual Easter Egg Hunt For Dogs Event. When I got the call in September that Max would be getting his service dog in October, I was excited and nervous and OMG is this really happening??

I rushed out and bought a dog bed for Max's service dog "to be". Max, who has never slept on a pillow, immediately claimed it as his own. I rushed back out and bought another dog bed for Max's service dog. In the meantime, Animal Planet aired an episode featuring National Service Dogs and two families who had autism service dogs for their sons who have autism. I watched it and bawled my eyes out. I wasn't sad, but uplifted with the possibilities that were opening up for Max. We started talking with Max about the fact that he was going to be getting his very own dog. While he was excited, he didn't totally understand what it would mean to have an autism service dog. In retrospect, neither did we.

And then came Chester. The incredible trainers at NSD matched Chester to Max by reviewing 2 weeks of Max's behaviour data, Max's busy schedule, and meeting for a follow-up with myself and Max two weeks before team training in Cambridge. They also took how well I worked with him into consideration. As lead handler, they had me work with all seven of the service dogs that were going out as part of the Fall 2012 class. I like to think Chester and I had a special bond right off the bat, but really, he was terrific with all of the families. The picture of him chewing on his bone was the first picture I took of him when they brought him to me and told me he would be Max's autism service dog at the end of the first full day of team training. I was on cloud nine. And after a week of team training in Cambridge, I headed home with Chester to introduce him to "his boy".

We had been told not to expect any Disney moments when introducing our new autism service dogs into our homes. Often children with autism take months (some even years) to bond with their service dogs. It took Max a couple of hours to feel comfortable to even approach Chester. He started out by petting Chester with his feet and worked his way up to petting him with his hands. At the 3.5 hour mark, Max was laying on Chester, and I started to cry with relief.

Later that night, Chester passed out on the couch (it had been a long week of team training for both of us). Max was very happy having Chester with him on the couch and one of my favourite photos of them was taken as Max reached out to pet his dog. My heart continued to melt.

The next morning, I went to check on Max and Chester, wondering how their first night sharing a bedroom went. They were chilling out together, neither in a hurry to get moving. Truly amazing. Later that day I took Max on his first walk with Chester. He wasn't even hooked up yet, but he held onto the handle attached to Chester's harness like his life depended on it. For the first time in Max's 6 years, he did not try to bolt when we went on a walk together. More tears on my part.

Over the last two weeks, we have continued to settle in as a family (of five!). Max refuses to go to bed if Chester isn't with him.

When Max is playing with his iPad on the couch, he counts on Chester for support.

When we're on the road, Chester keeps a close eye on his boy.

When Max has to go to the dentist, Chester keeps him company in the waiting room.

On walks, he reminds Max to stop and look both ways before he crosses the street.

And when Max isn't feeling well, he has his back.

There is so much more to say, but the thing that stands out the most is that we feel blessed to have Chester as part of our family and most importantly as Max's autism service dog. He has brought peace to our home, and a calmness to Max that brings joy to our hearts. We are only two weeks in and I can't wait to see what the future brings for Chester and Max. Stay tuned for more of their adventures!

ASD treatment a financial drain on families.

Max Carefoot, 6, sits attentively at a pint-sized table, his hands gently resting on his knees. On cue, he vocalizes a series of words, carefully chosen to perfect his enunciation skills.

Working on his bite and blow sounds, the bright-eyed boy repeats after communicative disorders assistant Gwen Blackburn.

My roof. My leaf. My calf. My knife. My cuff. My elf. My giraffe. My chief. Each letter of every word is audible. His speech is clear and his diction is precise.

“He’s doing amazing with words,” said Blackburn, who has been working with the Oakville boy for the past year. And considering Max was non-verbal until two years ago, his achievements are worthy of a gold star.

“I call him the hardest working kid in autism,” said his mom, Katrina Carefoot.

...Read more on InsideHalton.com

trying to piece together the autism puzzle.

Little Max Carefoot was just a tot when his mom Katrina and dad Scott suspected their son’s development was lagging compared to that of his peers. The blond-haired boy with beautiful doe eyes wasn’t talking, didn’t respond to his name and didn’t offer eye contact.

The Carefoots struggled with the notion something was impeding Max’s development. Doctors weren’t sympathetic. They wouldn’t entertain autism spectrum disorder as a possibility.

“Our doctor was telling us milestones go six months either way. I’m going through my autism checklist saying, ‘Hey, look buddy, he meets all the criteria,’” said the Oakville mom. “We just weren’t taken serious(ly) as first-time parents.”

...Read more on InsideHalton.com

helping your child with autism make friends: matt & max.

This summer Max spent mornings with his junior respite worker, Matt. As part of working with Max, Matt wrote a weekly blog about his experience.

Here is Matt's take on how week 6 went:

With the pain of teething still hurting Max, he continued to try to hit and scratch me in frustration. However, an awesome thing happened when spent an afternoon at blueballoon - the clinic where Max goes for all of his therapy. At blueballoon, he was amazing - using full sentences, singing, matching pictures and he spoke so clearly. He was also full of smiles when we would play games there. He giggled a lot and it was a really positive experience with him. Also, his therapists gave me suggestions on how to deal with his scratching and pinching. The biggest thing I learned is to just ignore it and walk away - which was actually quite successful. They also suggested to sometimes tell Max I will take certain things away when he isn't behaving. This was slightly less successful but still worked. Using these tools led to less scratching by the end of the summer.

autism in the classroom: questions from max's classmates.

As Max's Official Taxi Service Provider (MOTSP for short), I spend more time than most parents in Max's classroom. Every day at 12:30pm, I pick Max up to take him to therapy. The kids are usually sitting eating their lunches when I arrive. Max knows the schedule, so he is watching the door waiting for me. Last year the kids didn't seem to pay much attention to me - but this year, they are a much more curious bunch. It may be that there is a crop of new kids in Max's grade 1 class who are just getting used to Max and some of the things that are different about him.

One little girl in particular has a question for me everyday. Yesterday she asked "Where does Max go in the afternoon?". When I explained that Max goes to a different place to learn, sort of like a school, she followed up with "What does he learn there?". Fair question. How do I explain Behavioural therapy to a 6 year old? I responded "Well, he works on learning how to talk more, and how to play with friends". Not quite accurate, but I figured she would understand that. Today she asked me "Does Max's sister go to this school? Who is she?". I responded that yes, Max's little sister does go to this school and that she is in JK. I'm interested to see what question she has for me tomorrow.

I mentioned the questions being asked to Max's EA and she said that most of the kids accept Max for Max very quickly. The fact that he has someone in the class to help him, uses a different washroom, and gets to go on walks around the school when he needs a break quickly becomes normal. It's interesting that Max's classmates don't make much of the special treatment he gets. I really can't wait to hear what they have to say when he starts bringing his service dog to school with him in the spring. I think that might be the tipping point!

autism in the classroom: max's first day of grade one.

Max started grade one yesterday. I'm certain I was at least as stressed out about it as he was. Well, maybe I was more stressed out beforehand and he was more stressed out on the actual day. I didn't sleep a wink on Monday night. It wasn't that I thought anything bad would happen, it's just that I know how hard changes are on him. After having Max home with me all summer, it's a big transition for both of us.

To be fair, Max started getting ready for his move to grade one back in the spring. For the last month of school, Max's EA (he's had the same awesome EA since JK) took him on daily visits to his new teacher's room. He got to see where his new desk would be, his coat hook, and the washroom. He also spent time with his new teacher, a wonderful lady who is very excited to have Max in her room. He even has a social story about grade 1 that his EA made for him. He's a lucky kid to have such a great team supporting him at school.

This picture was taken in our driveway before we left for school. Max was happy all the way there, until we pulled up in our special parking spot - directly in front of a "no parking ever" sign. His EA came up to the car and when he saw her, his lower lip started to quiver. He refused to get out of the car, and I had to lift him out. Then he sat on the ground, his head in his hands. When it became clear he wasn't going to budge, we picked him up and carried him into the classroom.

And then he was fine.

He didn't even say goodbye to me. On day two, we pulled up to the school, he hopped out of the car, and went and stood in line with his class. I was lucky to get a "bye mommy" as he went inside. Good job my little rock star. I am SO proud of you!!

helping your child with autism make friends: matt & max.

How is it already the middle of August? We've had an awesome summer so far and Matt and Max have really been through a lot together - including Max being sick and out of sorts and treating Matt to an assortment of annoying behaviours. Lucky for Max - and me - Matt has taken it all in stride.

Here is Matt's latest update:

This week was a balanced week. After getting over his cold, Max has become calmer and less irritable so it was quite an easy first half of the week. However, with his recovery of one problem another arrived. His new teeth have begun to come in which I can imagine wouldn't feel too good. This led to him deliberately doing things he wasn't supposed to because he needed an outlet for his frustrations. He has also become quite taken with music. Every time he gets upset I can put on his children's music CD and he calms right down. This was a good week with Max.

helping your child with autism make friends: matt & max.

This past week was a tough one. Max was sick with a wicked summer cold. His behaviour went sideways and he tested all of us with his whining, squealing and shrieking. I was fairly certain Matt was going to tell me he'd had enough and would be back once Max was back to his old self. But Matt stuck it out and once again blew me away with his maturity and patience.

Here is Matt's week 4 update: 
This week was a little bit more difficult than other weeks. Since Max was sick he had become more irritable and his way of conveying these feelings were by yelling more often and louder. This was hard for me because he also would start getting upset at things, and when I removed the thing that made him upset he got upset again. This was lose-lose situation. Other than that we went to the park for the first time together. He seems to have an infinite amount of energy when surrounded by climbable objects. So other than him not feeling well, it was still a successful week with Max.


Read more of Matt & Max's adventures

helping your child with autism make friends: matt & max.

One of the best parts of this summer has been watching Max and his respite worker, Matt, get to know each other and bond. The bonding happened very quickly. Max took to Matt like a house a fire. The first week Matt had a bunch of questions for me, which I expected, so I stayed front and centre so he wouldn't feel like I had thrown him to the wolves. The second week I started to back off - I even ran a quick errand to the grocery store to see how the fellas would do without me. By the third week, Matt had the whole Max thing down pat - even giving him bathes and helping him go to the washroom. I could not be more pleased with how Matt is caring for Max. It's actually a bit mind blowing that he is 13 years old. He has the patience of a saint and really gets how to work with Max. I asked Matt to write a weekly blog post on how he sees his relationship with Max developing so that I could share it here. We're playing a bit of catch up, so here are the first three weeks.

Weeks 1 & 2: 
The first two weeks have been interesting. We were still getting used to each other so the first week it felt as if he were testing me to see what he could get away with doing and what I would not allow him to do. Also the change of pace to the mornings seemed to change his bathroom regularity so their were a few accidents. But as we both got more used to the schedule, things leveled out and became more normal. Max's physical and mental development has improved greatly over the past two weeks. He's begun to use his words far more often and he has begun to become more independent especially with bike riding. Also the first time setting him up with the bath was not as hard as I had thought because he knew what to do. If he didn't want something like the water level or temperature he would voice his opinion and I would change it. Overall the first two weeks were good.

Week 3: 
This week was interesting because with Max beginning to trust me even more we are able to do more. He is now able to ride his bike by himself with only a few minor stumbles. With this there is also some trouble because if he falls he does not let me help him up or help him on the bike again. This is part of him becoming more independent. Also, he was beginning to get sick this week which triggered more of an easily upset Max than I was used to. I hate seeing a child upset but it's also my job to make sure he is not doing what he's not supposed to so I had to stay patient through this. With all this it was a challenging but very good week.