Drink Up.

We're on Day 5 of toilet training Max. Part of this process involves pumping him full of liquids so that he has to go to the bathroom a lot. I'm also taking this opportunity to pump myself full of liquids. Take that any way you want. During my 3.5 hour marathon session with Max in the bathroom last night I may or may not have texted Scott to bring me a drink NOW! I'd challenge anyone to hang out with a 3 year old in a 5 x 4 room for the better part of an evening and not make the same request.

The great thing about toilet training is that everyone is full of advice. Dr.Phil can apparently toilet train a kid in 3 days. I invite him to join us Chez Carefoot to show us how. I've been told we should be modeling peeing in the potty for Max. Dudes. We've been doing that since the kid was born. There is no privacy once you have children. There is no peeing without someone trying to crawl in your lap. My kids know about doing the business in the toilet. And just like most things in life, knowing how and following through are two different things altogether.

The thing to keep in mind, is that for the majority of children (regular or special needs), toilet training is hard. Sure there are the brilliant BMers who put on a pair of gaunch and never look back, never have an accident, never wet their beds...these are the same mythical children who slept through the night as babies with nary a peep from the day they came home from the hospital. And you know what I want to say to these parents who think they have cracked the nut on toilet training? GFY. That can mean "Good For You", or something entirely different, you choose.

We are using the Behaviour approach to toilet training. This means that we don't use pull-ups during the day. Max wears only underwear and shorts. We put him on the toilet every 15 minutes, and we keep him on for a minimum of 2 minutes. Then we chart whether or not he was wet, dirty or dry and if he urinated or BM'd during his bathroom visit. If he's wet, we make him touch his wet shorts and underwear so he understands that him peeing made his pants wet, and we tell him "pee goes in the potty".  If he urinates or has a BM, we make a big happy to do about it and reward him with M&Ms.  Then we help him get dressed, wash his hands and try to get him to drink more liquids so we can do it all again in 15 minutes. Yeah it sucks. Yeah it's exhausting. But the kid peed in the potty 5 times today. Not bad for only 5 days into this Potty Training Adventure.

Scott and I are completely wiped out. Our team at blueballoon is providing intensive support right now, and on top of his regular IBI session this morning, two of his therapists spent the day at the house to keep him on track, do some parent coaching, and make sure that he has enough successful trips to the bathroom that he starts to understand how to make the magic happen. They are experts at handling his objections and his tantrums, and they also know how to make going to the potty fun. Seriously, I never would have thought about having a bag full of fun toys that you only get to play with when you are sitting on the potty. Max now wants to go to the bathroom because of all the cool stuff he gets to do while he is parked on the can.  Kind of similar to my Vanity Fair sitting on the back of the toilet for me.

For the next two days, Scott and I are flying solo on the potty training (though we have an emergency blueballoon help line set up to call for advice should we have any problems). Then Tuesday through Friday I will be staying home with Max in the mornings to keep him on track. Our goal is that after 10 days of intensive toilet training he will be able to stay dry between scheduled visits to the bathroom (which will be every 30 to 40 minutes). The increased hours in therapy are costly, but I'm looking at the big picture and thinking that the dollars saved in buying diapers will make it a positive return on investment in a few months. That and one less butt to change won't be a bad thing. Now excuse me while I go top up my beverage...

#Pottytraining #Fail

We started toilet training Max on Tuesday. Wait. Let me pour myself a stiff drink before I start this tale of feces and woe.

We started toilet training Max on Tuesday. I have the grey hair to prove it. And sticky floors. And now that you mention it, I am pretty much caught up on all of my laundry because I've been running my washer and dryer non-stop for the past 2 days. Who knew that one little boy could produce so much excrement? Who knew that parking a child on the toilet every 15 minutes could be so dog damn exhausting? Add to that, we are tracking every toileting attempt and every accident, modeling how to pee and poop in the potty, doling out M&M's for our successful eliminations and patting ourselves on the back for going #1 and #2. Actually, we get really excited when we go #2, and we point it out to Max, do a little dance, and comment on how wonderful it is to go poop in the potty. It's good times in the Carefoot household.

Toilet training a regular kiddo is challenging. Toilet training a child with Autism is something else altogether. You can do it right (basically go hard at it for 10 days straight until your kiddo aces it), or you can torture your child and your family by doing it half "ass" (get it?) and not providing your child with the intensity he needs to master this new skill. So far, Max has successfully peed once (at daycare) and pooped once (at home) in the toilet. That was on Tuesday and Wednesday respectively. If Thursday was a twitter message it would read: "seriously, this sh!t is going to kill me - Max 1, Mommy 0, #pottytraining #fail".

Now that we've started, there really isn't any turning back. While toilet training is extremely stressful and I am super tempted to quit and go back to diapers, it can suck now or we can change diapers for two more years and it can suck when Max is 5 and even bigger than he is now. The most challenging part about all of this is putting Max on the toilet every 15 minutes is hard on him (too many transitions for his liking) and it is very disruptive for his therapy sessions. As the emails flew back and forth between Max's team at blueballoon today, I felt like I was going to have an anxiety attack. What would we all do? How was this to be handled? He has an intensive therapeutic listening block coming up, and Music Camp, and he's supposed to be transitioning into the preschool room!!  And why did I think this was a good idea in the first place?!!

At the suggestion of Max's head therapist, it looks like we are going to hire a respite worker to stay home with Max for the next week to train him intensively. This way by the time he starts his intensive block on August 10th, he'll be able to make it 30 to 40 minutes between bathroom visits. His therapists have assured me that this will work. Never having toilet trained before I'm going to try to relax (which everyone keeps telling me to do) and have faith. Can one be zen about poop?

September is the New January.

We've all heard the saying "brown is the new black", "Lebron is the new MJ", and "Mojito is the new Martini" (okay I made that one up), but if you are a parent of school age children, "September is the new January". Truly. Why? Because going back to school is the biggest transition a kiddo deals with during the year. For you non-breeders, you can just check out now because I know that all September means to you is that you get to curse as you sit behind school buses, that your commute suddenly gets significantly longer, and you have to listen to your friends with kids complain about how "so-and-so" keeps forgetting his lunch on the school bus.

We are in the very early years of September being the most important month of the year.  In fact, this is the first year that September means anything to us.  Our son Max is 3 years old, and he is starting preschool at the end of August.  I am feeling all sorts of stress about this, which is probably silly.  Technically, he is moving from the Toddler room at his daycare into the Preschool room.  The ratios are much higher (8:1 vs 5:1) and there are a lot more kids in the Preschool room (24 vs. the 10 kids that Max is used to).  To complicate matters, Max is Autistic, so the teachers in his new room have to get up to speed quickly on how to work with Max.  Yeah, no wonder I am stressed.  

I have been pushing for Max to move out of the Toddler room for months.  The maximum age of that room is supposed to be 30 months and Max is now 39 months old.  He towers over the other kids in the Toddler room.  All of the kids he started with have been in the Preschool room for what feels like a lifetime.  The toys in the Toddler room suck, and the activities don't interest him anymore.  He's ready.  Except for one BIG thing.  I'm sure you can guess what it is.  That's right, the whole peeing in the potty deal.  

Boys tend to sort out toilet training later than girls.  Add Autism into the equation and you have a different set of challenges.  If you can believe it, we actually consulted Max's Senior Behaviouralist (the head of his Autism therapy team) on how to best handle this.  Before we started toilet training we charted Max's "eliminations" (pees and poos) down to the minute.  We consulted his daycare teachers.  We pushed back the toilet training start date because I was out of town for a weekend.  And then "P" day came and we put away Max's diapers and put him in underwear.  Everyone had been "briefed", we all knew how we were going to manage toilet training Max.  But I had no idea just how stressful it would be.  Three days in and I was fried.  My husband was fried.  Max was fine, but a bit confused (and smelly).  We ended up having 2 of this therapists spend a day at our house to coach us and to train Max intensively.  A costly solution, but this likely saved my marriage and my sanity.

I'm happy to report that just 9 days into toilet training, Max seems to get it.  He still has accidents, but 2/3's of the time he pees in the potty.  Poop, that's another issue, another blog post.  But peeing...peeing this kid gets.  We have 2 more weeks to get this whole thing sorted out before he moves to the Preschool room.  My floors are sticky, my laundry machine is running 24 hours a day, and my freezer is well stocked with vodka.  Come on September, bring it!

About This Post

It’s back-to-school time, and this year Sprite and TwitterMoms have partnered with bloggers like me to share back-to-school tips and tricks, advice, stories and more! Visit Sprite's back-to-school channel on TwitterMoms to get helpful ideas, learn how to survive the back to school rush, seek out advice from other TwitterMoms and join the conversation. You can learn more about donating your My Coke Rewards Points to support your local school, how to enter for a chance to win some Back to School cash, check out recipes, or even play some fun games. Here's to a successful and stress-free back to school season from Sprite and TwitterMoms!

welcome to the shit show.

I don't know who this lady is, but I wish she'd stop touching the washer/dryer set of my dreams.

Conversation at the Carefoot home last weekend:

Me: not again. Max. Ugh. I am so tired of this. Scott….

Scott: Seriously? Again? What is that, the fourth time today?

Me: Yes.

Scott: We live in a god damn monkey cage.

Me: I don’t think I have it in me to scrub shit out of the carpet one more time.

This is a sensitive topic. One that I have delayed writing about because I like to focus on the positive stuff with Max, and quite frankly, this subject is one I prefer not to think about.

We started toilet training Max during the summer of 2009. It has been an ongoing process, one that we have yet to see the other side of. For the most part, Max urinates in the toilet. There are certain people he will not do this for (new therapists tend to get the worst of it), but as long as we take him to the toilet on an hourly basis, he does not wet himself. I should point out that he has to be prompted to go to the toilet, and he typically complains by whining or crying (depending on who is taking him). The funny thing is that once he pees, he looks overjoyed and loves the praise he gets for eliminating in the toilet.

That's right, "eliminating".  We have all sorts of pc ways of saying "peeing in the potty". Pee is not pee, it is referred to as #1 or urinating.  Even though I feel like screaming "I can't believe you just pissed all over the front hallway" when Max gleefully hoses down anything within stream, I have to remain calm.  Ideally, I will give no reaction at all because any response will be deemed as reinforcement of the behaviour.

Back to eliminating though.  Poop is not poop, it is referred to as #2, defecating or preferably "BM" (bowel movement).  Having spent almost every morning of the last 3 months scrubbing shit out of our carpet, wiping down walls, and doing endless loads of laundry on "hot" with tide with bleach, I can tell you that when you are knee deep in it, "BM" is not what you are calling it.

The most frustrating thing about Max's behaviour is that he actually knows when he needs to have a BM (I'm going to refer to it as such for the remainder of this blog for the more sensitive of my readers).   Many mornings he will hop out of bed, remove his pull-up, squat and have a BM on the floor.  Of course, that isn't good enough, he then steps in it and jumps back into bed.  Imagine waking up to that every damn day.

We are doing our best to break this habit/behaviour/love of poop by getting up much earlier and waking Max up before he has a chance to do his thing.  From a behaviour training perspective, all we can do is positive reinforcement (which is a stretch in the absence of the behaviour).  "Yay Max! Good job keeping your pants on!" doesn't outweigh whatever joy he is getting out of taking a big ol' dump on his bedroom floor (and the $400 rug I lovingly selected for his room before he was born).  Better yet, given the opportunity, he will sneak off during the day to repeat the behaviour, so weekends are always an adventure.

So when I tweet:


@scottcarefoot I would like a candy apple red front loading @GE_Applicances washer/dryer set for Valentine's day. HOT!


I am not kidding.  Unfortunately, this is not in the budget so no washer/dryer set for me (big sigh).  I should count my blessings for the 11 year old-on its last legs-apartment size top/bottom unit we have.  A lot of folks would have to go to the laundromat on a daily basis if they were dealing with this!  Excuse me while I go and put another load in. 

Three Cheers For Poop.

Never in my life did I think I would call my child over to look at my poop. Never. Disgusting, right? Now, we've all taken a look at our own BM's (bowel movements for those that haven't discussed poop extensively in a clinical setting), perhaps been impressed or grossed out, but that's between you and you, and is extremely personal. But how do you toilet train an Autistic child who isn't speaking yet, and rarely makes nonverbal requests (unless you include gesticulating wildly when he catches a glimpse of Rice Krispie squares on the kitchen counter)? Modeling the appropriate behaviour is one way (hence showing Max my poop). Another key part of toilet training for a child with Autism is getting him used to the routine of toileting, even before he is actually ready to toilet train.

Read the rest of this post on Autism Sucks.

fundraiser for mateo - autism from a mother's perspective.

Max at his 2nd birthday party (a week before his sister Cameron came into the world and changed his life forever)

This afternoon I had the opportunity to speak at a fundraiser for a little boy named Mateo who was recently diagnosed with autism. As much as I hate "welcoming" new families into the autism community (wouldn't wish it on anyone except our PM, Stephen Harper), it felt important to share Max's story with Matteo's parents and their friends and family. While it has been over three years since Max received his diagnosis, those raw, overwhelming feelings of initial shock and sadness are still easily accessible. I found myself transported back in time, and felt blessed to truly be able to speak from a place of empathy for this family.

Autism from a mother’s perspective.

My son Max, who is turning 6 years old tomorrow, has autism. He was diagnosed at the age of 32 months, but our journey into autism actually started at the age of 14 months when we really started to take notice that Max was not hitting milestones that one would expect. He didn’t respond to his name, or wave goodbye. He didn’t point and most upsetting, he had no words, just a stream of babbling “dadadadada”. Because he was our first child, our doctor told us to relax and brushed our concerns off as those of nervous first time parents.

Max continued to stall and miss milestone after milestone. He had problems sleeping, got terribly upset at the smallest transition. It was only at his 2 and a half year check up, when he sat on the doctor’s examining table and repeatedly banged his head on the wall for the entire appointment, that my concerns were taken seriously. 2 months later we had a diagnosis.
I have documented our journey with Max since the day he was born on my website, ficklefeline.ca. The hardest post I have ever written was on the day we finally had our biggest fear confirmed, that Max has autism. I was unable to speak about it, so instead I wrote about it.

...

And that has been my attitude ever since. We immediately started Max in IBI therapy. He also had Occupational therapy to address his sensory needs, Speech and Music therapy to work towards helping him learn how to speak. Anything that we could do to help him, we did. And it was expensive. The first year of Max’s therapy cost over $50,000. Each year that cost has increased as his therapy has become more focussed and intensive. This year it topped $70,000. We have remortgaged our home, maxed out credit lines and credit cards and relied heavily on the generosity of our families. Funding for autism is in high demand and we waited two and a half years on the ErinOak waitlist before Max was picked up. This funding only covers half of the cost, but it does provide some relief.

I am outlining the costs up front to help you understand what it takes to provide a child with autism the therapy he will need to be truly successful. It is mandatory that this therapy be provided as early as possibly and intensively. My attitude has always been the more therapy the better. Max receives treatment 7 days a week. We don’t take breaks from therapy during holidays - if anything, we snap up extra hours. And it has paid off.

When Max started therapy, he was unable to make eye contact, speak, imitate, follow simple instructions, or play with toys appropriately. He had to wear a helmet on the playground because he would get so upset during transitions in and outside that he would throw himself on the cement ground and bang his head. It took him six months of treatment to “learn how to learn”, and by that I mean, to be able to sit and pay attention long enough to complete a simple activity or task.

Our home was chaos. Sleep was scarce, I had gone back to work full-time after being off on mat leave with our daughter, and it became clear that having both parents working full-time in downtown Toronto was not going to work. There are only so many times you can tell your boss you have to leave work because your son is throwing a tantrum and is inconsolable. Something had to give.

So, I left my full-time job and started working part-time from home. Days are filled with daycare drop-offs, therapy, consultations, meetings about Max, and trying to hold it all together. I realized that if I was truly going to get Max everything he needed to be as successful as he can be, I needed to make that my number one focus. And it has been worth it. Max’s progress continued. I call it the “two steps forward one step back dance of autism”. Little wins, little setbacks, add them all up and you hit huge home runs - like the first time Max said “Momma” on August 20, 2009 after participating in 2 weeks of a Music and Speech therapy camp. We actually celebrate August 20th every year just like it’s a birthday.

Luckily, it is the wins that rise to the top of your memory bank. I keep a bottle of champagne chilled and ready to go at all times. You have to, because the hard days, they are also plentiful and will break you if you don’t celebrate when your child uses a spoon or fork for the first time, hums a song from daycare, looks at you when you say his name, and the ultimate party time, successfully uses the toilet. By the way, we have been working on toileting for 3 years now, and we are still not completely there. I recommend on stocking up on wine when you start toilet training, because that is one of the toughest battles we have fought. But I know that it isn’t a matter of if Max will successfully meet a milestone, it’s only a matter of when. That’s the way you have to approach it. Patience, a sense of humor, and all of the love in your heart. My mentor, the late Kim Pace, told me “Katrina, if you believe in Max, that he can do anything, then that is the truth, that is what will happen”. And I have stood by that advice to this day.

When we fast forward to where Max is today, he is integrated in Senior Kindergarten and attends school in the mornings with a dedicated Educational Assistent. He is the best reader in his class, participates in morning circle, has a favourite girlfriend “Maggie”, requests for his sister Cammie to come play with him at home, is taking gymnastics, and will not only happily tell you what he wants and doesn’t want, but has recently started telling us what he feels with phrases like “Max is sad”, “tummy hurt”, and “I love you”. He is also my grocery shopping buddy and we have a standing weekly lunch date at the local burrito place.

Two things I stand by when it comes to Max are that it is my job as his mom to help him learn how to share his light with the world and that we will all be attending his university graduation.

This deep belief gets me through. That and a tonne of support from my family and friends and the smile of my son. It is the hardest and most rewarding journey of my life. Being Max’s mom has taught me more in the last 6 years than the 30 years combined before I had him. He has changed me profoundly and made me a stronger, more patient and more loving person. I could not have done this alone though. Just as Max counts on me, I count on the support of my friends, family, autism community and Max’s therapists and teachers. My number one advice to parents of children with autism is to make sure you ask for help, people want to help, they just don’t always know what you need. And friends and family, if your offer of help is turned down, ignore that and come over with a bottle of wine and do some dishes or fold some laundry. And buy some raffle tickets! This therapy doesn’t pay for itself!

Not Tonight Honey.

I learned a song when I was in college called "How Do You Keep the Music Playing". I was 19 and that was 15 full years ago (damn...). I remember thinking that it was a sweet song, and thinking that when I found the person I was meant to spend my life with, none of the things this song spoke of would apply. Because you know, true love conquers all and all that jazz.
I'm often blamed of over-sharing and making it weird, so forgive me if this makes you uncomfortable. But I had great plans for tonight. All week, I thought to myself, it's been a tough slog lately, I was out of town last weekend, toilet training is no fun, and it's time to reconnect with the hubby and remind him why he married me. Fast forward to our week, and we have one very stressed out little boy who as I write this is shrieking his head off in his room because he does not want to go to sleep. You have one super exhausted Fickle Feline downing a very stiff drink because I just spent the last 3.5 hours locked in a bathroom with my 3 year old Autistic son trying to get him to do his business in the potty, and you have one husband reading his book on the back deck in hopes of getting a break from his first born who is screaming blue murder.  Very sexy, I know.  

Having a child with special needs, or who is "heavily involved" as we like to say in the industry of paediatric health care can really, really take its toll on a marriage.  You work so hard to keep it together, to make sure your child is getting everything he needs.  Then there are you other children - are they getting enough of you?  Are they resentful that so much focus is placed on their sibling?  And your spouse... how is he coping in all of this?  And after you've taken care of everyone else, how you doin' mom??  You feeling like putting on something slinky, touching up your makeup and slipping on your f*ck me shoes?  Right.  Me too.  

It's work.  It's work I want to do.  I'm lucky that I'm married to my best friend.  I love him and I respect him and I find him very interesting and sexy.  And when I have my child's poop running down my arm and I'm holding his wailing body tight to me, sh!t and all, I have to remember that it's me this time, but last time it was Scott.  He is my partner in this.  He is one of the strongest men I know.  He laughs with me on the hard days.  Takes shifts with me on the nights when our kids tag team us, and happily orders take out when he sees that I have nothing left.  And if I say "Not tonight honey" he understands and just tries again tomorrow.

Max's 1st Day of Junior Kindergarten.

Today is Max’s first day of junior kindergarten and I am FREAKING OUT.  I haven’t slept well the last two nights.  I mean, I think I am "acting" calm, cool and collected...but inside I am FREAKING OUT.  Can you do both? 

In actuality, today is not really Max’s first full day of jk.  We are only meeting for a half hour with his teacher (conveniently timed smack dab in the middle of the day = me taking a vacation day).  His resource consultant will also be there.  It’s basically a meeting for the teacher to meet Max, find out a bit about him, give him a chance to get familiar with her, and for me to FREAK OUT.

Max will have a dedicated EA (educational assistant) whenever he is at school (which will only be in the mornings), so I’m hoping that I get to meet the two people that will be working with Max.  I’m sure it will all be fine, right?  So much work has been put in to get to this day.  Not just working with the school board to get Max into a school where he could have a real jk experience that will work from a scheduling perspective with his IBI program.  I'm talking about years of work.  Years of music and speech and occupational and behaviour therapy.  And day camps, daycares (good and bad), toilet training (still in progress) and practicing coping with different settings and situations. I was there for all of it, or I had some form of control regarding who would be in contact with Max.  This is different.  I’m giving up some of my control.  I’m having to trust other people with Max’s care.  And I’m FREAKING OUT. 

I hope I manage to come off like a nice, stable, balanced mom today.  I’m told I usually show well so it will probably be okay.  But really, I’m FREAKING OUT.  Good thing Max's new teacher reads my blog, eh?

the hard days of autism.

Today is the beginning of Autism Awareness month (tomorrow is the official "Autism Awareness Day" for the sticklers out there). In a quasi-ironic reminder from the universe, the last few days with Max have been really tough. He is getting a cold, hasn't been sleeping well, and has brought back some of his favourite behaviours from the "challenging behaviours we were hoping we were done with" hall of fame.

It is always discouraging for us when this happens.  We try to remind ourselves that whenever Max is sick, his behaviour goes sideways and that he will get back on track once he is feeling better.  But that is little consolation when you are in the middle of it.  I can sit here and write about it now and feel calm, repeat the mantra "two steps forward, one step back" and take a deep breath.  I was not so cool and collected this morning as Scott and I tried to get the kids out the door.  In fact, it was Scott who kept his wits about him and told me to go sit in the car and cool off and he would get the kids ready.  He was the strong one this morning (thanks Scott!!).

All kids have patches of regression.  We see that with Cameron and toilet training and sleeping in her own bed.  But when your child has Autism, it hurts so badly because you fight tooth and nail for every bit of progress.  Last week Max did wonderfully at his social language group.  This week I spent the entire hour blocking and redirecting him to keep him engaged.  The only thing he wanted any part of was the popping bubbles activity, and even that he made into a contact sport.

future wide receiver?

Of course, the other kid's mom was at the group for the first time, so her first impression of Max is that he is a bruiser who is incapable of sitting down and participating.  I don't know why I care what another parent of a child on the spectrum thinks of Max.  Her child is very high functioning, so they aren't even in the same realm.  Come to think of it, I probably should have just called and cancelled the group given how out of sorts Max was (but I am loathe to cancel any therapy of Max's unless he is completely incapacitated).

There is no doubt that Max will turn it around and have a burst of progress once he is feeling better.  And you know I'll be sure to report on it when it happens.  Just keep in mind, for all families dealing with Autism, that the hard days are frequent and likely harder than you can imagine.  Please consider sponsoring Max for the Toronto Walk Now for Autism this June.  He's worth it.  All these kids are.

Putting It All Out There.

I had an interesting conversation with Max's Resource Consultant, Joyce, yesterday. She had called to let me know how her visit with Max had gone at the daycare that morning. Since it was a beautiful sunny day, they decided to take Max over to the Intermediate playground. This playground is much larger than the Toddler playground, has better equipment, and more room to run wild. I was not surprised to find out that Max loved it. I was also not surprised to find out that he pitched a royal fit when they returned him to the Toddler playground. Once you've had caviar, who wants to return to cheese whiz? Apparently this reaction is completely normal, and most of the toddlers object strongly to returning to the Toddler area once they have experienced life in the fast lane.Joyce and I went on to discuss the recent meeting we had at the daycare, my return to work on May 1st, and the dreaded toilet training that we are slowly starting to embark on with Max. She mentioned that she had enjoyed my post about our last meeting, and she hoped it was okay that she had shared it with her manager, who in turn had shared it with her superior...and up the food chain it went. Apparently my post was well received over at the Halton Region offices and is now making the rounds. I'm thrilled that the people who work with Max are reading my blog - it is important to me that they know how much we appreciate their hard work with him. But I am even more pleased that Max's story, and our experience as a family, is being shared with decision makers, and people who can affect change.

For the most part, our experiences with receiving support from Halton have been positive. The only place where it really fell down was the intake process. I had called the Halton head office in August 2007, asking about their DEIPP (Developmental Early Identification Prevention Program) Clinic, and if there were any other dates available to get Max assessed. He was 16 months old at this point, and we knew in our hearts that something was really not right with him. Because he was so young, we were able to get an appointment to get him assessed. There are two key dates I remember very clearly when it comes to Max, (besides his birthday).The day we got the official diagnosis of Autism is one and the other is October 3, 2007, the day of his assessment by Valerie S. at the Halton Region Social & Community Services Department. She was very friendly, and took us into a little play room so she could meet Max and determine if we were correct in our suspicions regarding his development. Max ran around the room exploring, but did not gravitate towards any of the toys she had put out. He sat down and banged his head on the wall for a bit, and then went back to running around. She tried to engage him in appropriate play, attempted to get him to do some imitation, and asked me questions about his medical background. She seemed very disturbed by his behaviour, and to me, it felt like she had never seen a child with developmental delays before, like he had two heads or something.

At the end of the session, she showed me how Max had scored. He was severely behind in every area of development that she had tested him on. You'd think that with results like that, he would get immediate attention, that we would be told how to help our little boy, what to do. Sadly, when I asked "so what do we do now?", Valerie's response was that we would be referred to ErinOak, and a Developmental Consultant would be assigned to him, but the wait list for each was upwards of 8 months. I was too numb to ask follow-up questions, so I packed Max up, and left. I held my tears in until I got to the parking lot, and then I completely lost it. I felt like she had basically told me my kid was retarded (horrible word, I know, but that's how I felt), and pushed me out the door with no guidance as to how we were to proceed.

In retrospect, I know that she was just doing her job and using the resources available to her. But she could have told me about private options like Blue Balloon, where we ultimately ended up taking Max for a speech assessment a few months later. I also know that she likely knew he was Autistic, but was not allowed to voice this because she is not technically qualified to give such a diagnosis. Imagine if she had though? It would have been tough to swallow, but think how wonderful it would have been for Max if he truly had received early intervention from the age of 18 months old. The only support we received was a letter from Halton Children's Services a few months later letting us know about parent support groups we could go to while we waited for services. I think I lit the letter on fire and threw it in the sink. What a paltry offering and piss-poor substitute for what was really needed - immediate therapy for our Max.

Once services started coming through for Max, things got a lot better. We slowly learned "the system" and how to navigate it. We're still learning how to navigate it, how to milk the most out of the services available to us and to Max. I have attended focus groups for Halton, and you can rest assured that I highlighted the issues with the intake process, loud and clear. We're still waiting for the one service that Max truly needs, and that is publicly funded IBI therapy. This will come through by January 2011 at the earliest. In a perfect world, he would have started receiving it in October 2007. In a perfect world...

not just any day.

Today is a special day.  It is a day that I will celebrate every year for the rest of my life.  August 20th 2009 was one of the most exciting days we have experienced on our journey with Max.  It was the day when something clicked for him.  For some reason on this day his motor planning and his brain got together and shook hands.  It felt like a miracle.  But it was not.  It was the result of a lot of people working really, really hard and believing in Max.



One year later Max has made amazing progress.  He is starting to use language functionally.  He is starting to point at things when he wants them.  His eye contact is getting stronger and much more consistent.  Most of the time, he and Cameron have very normal sibling interactions (all jokes and then at each other's throats).   His transitions are much more smooth.  Toilet training is slowly but surely falling into place.  He is happier.


When we're in the thick of it, it's hard to see Max's progress because it inches along.  Three steps forward, two steps back, slow and steady.  But when you step back and are able to see the forest from the trees, you realize that this kid is amazing.  He works his ass off.  He laughs and loves, feels ups and downs just like all of us.  We have so much to look forward to with him - he will teach us even more than we teach him.

autism and junior kindergarten. are we ready for this jelly?

Max and Nicky (one of his super wonderful daycare teachers)

Max starts junior kindergarten next Wednesday. Seven sleeps until we take his little world, throw it up in the air and see where all the pieces land. Then we will all scramble around for a month trying to figure out who goes where and what’s that teacher’s name again and when does Max get picked up on what day and who’s picking him up and what’s that special ed teacher inferring and I don’t think I like that person’s attitude and bloody hell why isn’t Max sleeping through the night and why is his toilet training going sideways yet again?

Yeah, it’s going to be GREAT.

Starting junior kindergarten (jk) is a huge milestone for Max. It’s a necessary step in helping him learn how to socialize with new people, deal with new environments, and all that good stuff. But to say it will be very stressful on all involved is putting it mildly.

As parents, it scares Scott and me to death. It’s the first step to putting Max out in the big scary world where we can’t control every little aspect of who interacts with him and what he is exposed to. Granted, there will be many people working with Max to ensure he is safe and happy (familiar faces along with new faces). I suspect Max will probably handle it better than we do.

His new teachers are going to have to figure out how they are going to run their program which is streamlined for neurotypical kids while also finding a way to include Max. This is always a challenge because it will take Max a while to learn their new routine, and it will take them a while to learn the ins and outs of Max – what he loves and what upsets him.

Many of the kids in his room will be away from their moms and dads for the first time, and for all of them it will be a new world with foreign expectations. Add to that the kid named Max who doesn’t talk much and doesn’t act like the rest of them and why does he always leave right after lunch? And why does he get so upset when the lights get turned off or when he gets the least bit wet? Why does he have his own teacher with him all the time?

Max is going to feel overwhelmed and exhausted as he has to work twice as hard to self-acclimate in this completely new environment.  The majority of the faces will be unfamiliar, the kindergarten room is huge, the outdoor play area is a great wide open space, and the number of kids in the room will be double what he is used to. If you have ever travelled somewhere new where you don’t speak the language and you feel lost in your surroundings you have a hint at how Max will feel. Except you can look up the words you need to know in a translation book and figure out where you need to go with a map. Max doesn’t necessarily have those tools at his disposal yet. And while he may not be able to articulate that he misses the daycare and the teachers he is used to, I suspect that deep down he will be confused as to why only his sister Cameron is getting dropped off at the daycare he loves so much and now he is getting taken to this new place.

So, I guess we better all eat our wheaties over the next while. I am going with the “take it a day at a time” mantra in the hopes that this helps me not completely lose it over every lost lunchbox, parent permission form and milk money demands. Giddyup.

max update.

Two years ago, Autism knocked on our door and told us “your son is coming with me”. My heart sank. My head spun. My stomach twisted. My gut said “hell no”. From that day forward, when faced with any challenge Autism has thrown our way, I have gone with my gut. When the going gets tough, my gut is the only thing that can be trusted. 

early intervention.

They are buzz words for sure. But for a reason. Early intervention is the key to jamming your feet into your running shoes and sprinting down the street after Autism. It is the only way to pull your child out of its grasp instead of letting Autism pull him into the darkness, out of your reach.

Back then I could not picture our life in 6 months, let alone 24 months. Yet here we are. Two steps forward, one step back, the entire way. Transitions, talking, toilet training – we are still working on all of these things for sure. It’s hard to have perspective and see the progress Max has had in the past 2 years.

The progress has been huge and it is important to acknowledge it, rejoice in it.

Max can do so, so much. He has an independent spirit. A sense of humour. He can write his name, knows his letters in upper and lower case, and can count to twenty. He calls me “mommy” and gives hugs and kisses. He teases his little sister and tells his Nana and Bumpa “night night” when they go home at the end of the day. He sings songs. He walks into the kitchen and announces “I want more chips mommy!”. He enjoys watching Elmo. He finds solace in the outdoors. He is attending junior kindergarten. He is stunningly beautiful.

I hoped and prayed for him to be able to do all of these things. I always thought he was a good looking kid.

Every milestone has been made up of hundreds of tiny wins. We are winning.

I still cannot picture our life in 6 months, let alone 24 months. I hope and I pray for Max to be able to do all sorts of things. The only difference between 2 years ago and now is that my faith is iron clad.

the magic of visuals.

One tool for communicating with Max that we always seem to return to is visuals. Sometimes those visuals are actual photos and other times they are drawings of an item. We used a visual schedule when we first started toilet training, and the teachers in his junior kindergarten class use one to help Max understand what activity is coming up next. Our resource consultant Liz also created a social story for Max when he started jk, with pictures of his new teachers, his classroom, and different areas of the school he would be spending time in. They always help.

Over the past month, Max has been off his sleep schedule. And by off, I mean, not going to bed at all, and when he does sleep, he sleeps on the couch. This makes Scott and me lose our minds. It’s challenging on many fronts.

The first is that when Max doesn’t go to sleep, Cameron doesn’t want to go to sleep either (everyone is up partying, I don’t blame her).

The second is that when neither of our kids go to sleep, Scott and I get no downtime, whether that be hanging out together or chilling out solo.

The third problem is, that we never really know when Max is going to fall asleep. Lately it has been around midnight, and even then he has been waking up in the middle of the night to party. Imagine our frustration with him when he doesn’t want to get up in the morning. Gah!

So, what to do? I met with Max’s Senior Therapist Ami and we came up with a plan. Namely that when Max goes to bed, we shut the whole house down so he realizes that EVERYONE is going to bed and there is nothing exciting going on that he might miss. We put a picture of him sleeping in his bed on the front of his bedroom door and a stop sign on the inside of his bedroom door.

The first night, at 9pm on the dot, (Max was already in his pjs and had his teeth brushed), I took him by the hand and led him up the stairs to his room. I told him “Max, time to sleep” and I pointed to the picture of him on his front door. He looked at me and tried to escape down the hall into our bedroom. I blocked him and redirected him back into his room. Tired of having him rule the roost, I thought to myself, what would Dr.Phil say? He would say “When did you let Max start calling the shots?”. Huh. I turned and looked at Max, and in a very firm voice I said “Max, get in your bed and go to sleep”.

And he did. Just like that. I told him to do it and he listened. I tucked him in, gave him his talking Diego doll and a kiss on his cheek and left the room, shutting the door behind me.

He went to sleep. He stayed in his room all night. He has been following this routine for the past 4 nights. Last night, with daylight savings time, he was in bed at 8pm. It was glorious.

Maybe all he needed was a picture of himself sleeping and to be told “hey, kid, get your ass in your bed and shut your nasty little eyes”. Or something like that. 

Highs So High & Lows So Low.

I often wonder how a single day can have such extreme highs that have me soaring next to the sun yet also have lows that threaten to pull me down into a sink hole of despair. It seems unfair. Like a day should get its due as either perfect and unblemished or a shitastic day for the record books. Not both. Days like today pull me in two different directions, making me feel like I am on an emotional roller coaster. 

The high? Max peed in the toilet 8 times today. Outside of one accident this morning right after he woke up, he went 8 for 8. The first 2 trips were tough (a marathon 2.25 hour session in the bathroom followed by a 1 hour session). I knew he had to go, and I figured the best strategy was to just wait him out. The third time I put Max on the potty, he peed right away. And I beamed. He beamed. The world was a happy place. From a peeing perspective, it was smooth sailing for the rest of the day and the little guy went 8 for 8. We gave him a break and let him outside to stretch his legs. After 2 days of intensive potty training, he was very happy to get some fresh air.


But the lows, they are devastating, especially after such a successful day. Max is having a hard time getting to sleep tonight, and he tantrumed for almost an hour when we put him to bed. I thought we were finally in the clear, but he is up again, screaming, and it is breaking my heart. I checked on him to make sure he is okay, which he is. I put him in a dry pull-up, put him back in bed, and told him it is "time for sleep". Didn't work - he is still very upset, and there is nothing I can do except put my headphones on, take a deep breath, and try to focus on the high of going 8 for 8.