LOVE is what gets you through Autism

There’s not much I like about Autism. 

Trying to understand why T does some of the things he does: where he goes when he disappears:how to help him when he gets really upset: how to make sure he isn’t aggressive with other kids: navigating the school system to try to get him support: the repetitive, obsessive behaviour: ….and let’s not forget the over stimulating, sensory sensitivity that often starts our day off ridonkulously early…

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I wouldn’t say that I have found the silver lining in why any of this has happened…we have accepted it and we are moving day at a time. Yes there are crap days where I feel depressed and sad and wish this wasn’t our fight but there are also some beautiful days…one which I think, if T DIDN’T have Autism, if he was just like any other boy, would he be doing what he just did?

That is exactly what I thought this morning as he woke up (at a reasonable time for once,not the 5 am since Daylight Savings) came into the living room and cuddled up close. And said what EVERY mom craves to hear from their child…

“Mom, I love you so much”

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You see, right now, T’s repetitive habit (because they change like the season) is to tell everyone that he loves them so much and he is going to “squish you like a bug” with his face all cute and squished up and then asks for a big, big hug.

I know this came from one of his daycare providers who he absolutely adores and who has a particular bond with T, and who says both of those things to him often.

I’ll take it! and so will my parents, my husband’s mom and every one of our friends who he has now said “I love you so much”.

Because he is a genuine, sweet little guy and when he says it to you….it is so very heartfelt and makes your heart skip a beat out of pure love right back to him.

So as much as at times, this journey can suck (as it does for all parents)…for this moment, I will happily enjoy this aspect of Autism.


Love and Autism

Get down? or Get back on track?: Depression nearly got me

Yesterday felt like the lowest of the low kind of days. I felt like it simply took EVERYTHING inside of me just to get out of keep going…to keep working towards getting T help in school…

All parts of me felt on the verge of hiding under the covers and simply going back to sleep, avoiding the challenges we have been facing for a simpler, quieter, easier kind of day.

Was I depressed? Absolutely. Is this depression…I don’t think so. But easily see how if I were to give in to that desire to stop ,it could easily be there in a heartbeat.

As a family, we’re exhausted…we’ve been working with the school board in trying to find a solution to support our son in school. It’s been incredibly draining and the amount of meetings/emails/conversations we have had about it has us living in survival mode to just get through each day. We are continuing to advocate for T and won’t stop… but its taking every piece of energy we have.

Add that to the fact that I have been injured over the summer, have hardly exercised and ballooned in weight because of it. I just hit a wall. I started seriously questioning whether I needed to consider going to see someone professionally by mid afternoon??

But then we had an Autism Meetup last night. A group we started to support Parents in the city of Toronto who want to look at different ways to manage through Autism, look to each other for support, get advice on different solutions and talk through the victories and challenges we have.

It helped. But this morning helped even more.

I decided I can’t let this get to me. I know we have to keep fighting and I need to keep energy high to take care of our life. I need to be there to support our kids as they begin the school year, my husband, who is writing the most well-articulated letters to anyone and everyone willing (or not willing) to listen and my business, that I need to keep going in order to maintain the flexible schedule we need to access therapies/resources for T throughout the day.

I decided to try to go for a run…and then someone woke up early and agreed to come for a run with me. T…agreeing to come along if he could run in his pajamas.

Sometimes we need a little reminder what we’re fighting for

We raced…full force…fast…as hard as we could…and I remembered why I started running in the first place.

Running helped me work through the diagnosis of ASD, helped me gear up for the fight and I realized that I REALLY need that element in my life to stay sane.

I might not be as fast as I was awhile back, but I’m back.

A much needed TIME OUT to keep in the game

Let’s be honest. June knocked the wind out of my sails.

My resolve got knocked down, my heart ached, my dukes down in the fight. This is how it started…

Part 1: An autism conference where I realized how still very far away they are from really understanding Autism, how to treat it, and really concrete ideas on managing through it. But I also felt like my heart had been given hope and crushed at the same time as we learned more about  just how much of a fight this will be in T’s growing up..Abundantly clear thanks to an endearing dialogue between The Thomas’ a mother, Sandy and her 22-year-old son, Dylan as they candidly talked about their perspectives on what it was like growing up with Autism. Bottom line..”it will break your heart, it won’t be easy, but you’ll get through…”

Part 2: A series of “showcased” events (School dance, year-end shows, school field trip) in which it became fairly obvious that people I assumed “got it” were not exactly sure how to treat or address Autism as a normal part of daily life. One instance was the school trip in which I got the impression they thought T would  “dart” …we were on a farm..I volunteered that day but instead of including the two ASD kids in with the regular group and asking us to be active observers, we were kept separate along with the other Autistic boy in class and his mother, keeping the most important challenge of Autism, socialization the missing link on that adventure. Another moment was when he was set to the side at the dance,  that “joining in” to the rest of his class would get him too excited.  The last at a year-end recital for dance (we do Tap with him cause he loves the impact), I couldn’t help but cry because he was actually doing the routine (slower-about a 5 second delay) but he was doing it, and enjoying it and we were so friggin proud! and then…he just checked out…went off to his own planet halfway into the second routine and I started crying for a different reason…I was crying because I just wanted him to come back.. to be part of the moment…to be proud of what he accomplished…to be there.

Part 3: Where we are told that the Toronto District School Board does not have enough funding to provide an SNA (Special Needs Assistant) for T (and many others) next year and that we now need to fight our way up the ladder, become the squeaky wheel, do whatever is necessary to try to facilitate support for our son in the school system.

Part 4: Friends started asking how it was going, how T was doing, how our family was doing. I struggle often talking about Autism (except ironically online) because I don’t want it to consume our life. I don’t want it to be the only thing people think of when they look at T and yet, I want it to be a comfortable piece of conversation that is shared between our friends and family. I started to say something but couldn’t get the words out without that evil lump in my throat showing up. I’m not exactly sure why I started sobbing except that my energy felt it had hit an exhaustion point and my  heart-felt that it was physically aching. I said I was worried. That I felt like I wasn’t sure we were doing enough, that I hated thinking about how hard he might have in trying to connect with people growing up, worry about him, our daughter and making sure she is fairly and evenly cared husband that he’s doing ok (as much as we talk, he still has taken on the role of guardian, papa bear to us all). We have amazing friends..but I didn’t realize how amazing until we started talking and they just let me talk…and gently asked questions and reassured me that we were doing everything we could to help T and support his success.

Strength in your relationship will give you the energy you need

And this is how the month ended…My parents came to town and let us get up to the cottage on our own. I sincerely think this saved my bacon. After reading an article in the early days of ASD that quoted parents of special needs were 80% more likely to divorce, I have been a big believer that it is essential to keep your relationship strong in helping manage through Autism. This trip time gave us the chance to regroup, to reconnect, to talk, to laugh and to remember why it was we got married in the first place.

We came home stronger, moving on and ready for July..refreshed and optimistic. We will all have those roller coaster times but this part of the ride I want to stay on for a long time.

The journey through Autism isn’t always easy

Last week I attended an Autism conference by KidsAbility in Waterloo and had the privilege of listening to a very honest, heartwarming and heartbreaking dialogue between Dylan Thomas (a 22 year old U of W student with Aspergers) and his mother, each describing their point of view of what it was like growing up with Autism. The closeness of their relationship as mother and son as well as their unique perspectives gave me moments of laughing my ass off with Dylan’s straight shooter depiction of thinking of people as animals to that large lump that gets in your throat as his mom described the constant challenges they faced in navigating the school system on Dylan’s behalf.

That presentation as amazing as it was, somehow turned me into a sobbing mess on the way home, an ache in my heart that felt so heavy as I thought about the road ahead and what we might have to face as T grows up.

That was Friday and it somehow opened the floodgates for the weekend as my most amazing husband sent me off to the cottage with the girls to regroup, relax and reconnect with lovely ladies I hadn’t had a chance to catch up with for quite a while. These are beautiful friends, women that I know very well, enjoy their senses of humour, and can easily talk about anything. Yet I found myself, worn out from a fairly exhausting month of work, unable to prevent the crack in my voice and the floodgates to open when we were having a simple conversation about Autism. I’m not sure if it’s that I don’t want to talk about it in case in starts to ostracize people or if I don’t like talking about it because I don’t want it to define who T is and who we are. I surprised myself by admitting that anyone who gives me that sympathetic, “I’m sorry” head tilt, I want to slap and I find myself putting the word “Autism” out there as almost a dare for anyone to react in a way that is anything different from normal.

T is doing really well right now. He is engaging in social conversation, he is doing way better at looking people in the eyes, his frustration freak outs are almost non-existent. He is doing well because we are working hard at managing a household that works for Autism. We go to Speech Path weekly, we practice at home, we work with his teachers, we know what sets him off and create plans that don’t contribute to those ugly moments.

No one ever said the road would be straight…

But he still has Autism.

He still has repetitive behaviours, over-stimulation issues, sound and texture sensitivities, communication and social challenges.

We always try to take a very positive approach to this journey but I have to admit, after a month of school field trips, volunteering in the classroom, school dance, and most recently an end of year performance where the kids go to dance, we are emotionally exhausted. Every time we go to one of these events, my heart is FULL of love for our little guy..we feel so incredibly proud of what he has achieved. But there is a part of me that is really sad…sad when he checks out into his own world in the middle of a performance, sad that kids aren’t connecting to him in school activities, sad that he is left out…sad because we can’t make a difference in those moments.

I know this just a moment in his life but its one I wish we could speed through and get to the other side.

After hearing the Thomas’ story, it seems like the road is a long one.

Autism Diagnosis – 1 year later…It gets better

We’ve officially just passed our first year with an ASD diagnosis.

It’s sometimes hard to believe that it was only a year ago that we first got sucker-punched with the announcement that our 4 yr old son (at the time) was on the spectrum. This year became a test of everything. A test of our patience, a test on our marriage, a test on our ability to learn, to cope, to support, to stay positive, and ultimately to keep laughing.

For those of you new to a diagnosis, here is a snapshot of what might happen within the first year of discovering your child has Autism. (NB: I’m being brutally honest here in hopes to pass on a realistic viewpoint and let you know that you are not alone)

First 2-3 months: Feels like you’re in a foggy haze. I have seen people react many different ways to a diagnosis. Self-pity, frustration, anger, heartbreak. As much as I tried to be positive, there were still moments I felt like I wanted to scream. I couldn’t comprehend why us, didn’t think he was really that far off from regular kids to be defined as Autistic, embarrassed by how often when someone asked me about it I couldn’t hold it together. There will be many tears, often from frustration as you fumble through trying to figure out what you are supposed to do (especially when it comes to finding support and school). You might feel useless, overwhelmed, sad, disappointed and still completely (if not more so) madly in love with your child.

A dear friend gave us a copy of The first 100 Days by Autism Speaks. It helped. Although my husband and I are both Do’ers- I’m an event planner and he’s a project manager and we didn’t get the sit back and process mode, instead stupidly tried to project manage the Autism right out of our little guy.

100 Days of Autism Diagnosis

Source: via Jennifer on Pinterest


The next 4-8 months: Once we finally got to the realization that indeed our son was Autistic, that this was going to be a lifelong venture and we needed to start adjusting the how to’s in managing his success, we (or should I say I more so than my husband) had a really difficult time informing people of T’s ASD diagnosis. It felt often that people were a bit stunned and didn’t know what to say..choosing to say something like “well, he doesn’t seem Autistic to me” (hated that)..or gave us that dreaded pity look (hated that more). Then there are those friends who say something brilliant and just help you get through. Best examples of peeps we love and their originality that helped so much..

J- Simply said “ he’ll be an engineer” That matter of ASD would help guide his career path to a place where other socially awkward folks might hang out..that there was a pre-existing destination that would be completely accepting of the way he functions

G- Who sent a lovely email with “I don’t know what to say” (love her honesty) and that she was there..on call…standing by if we needed her.

T- Who let me just bawl and agreed it sucked and let me rant to her more than once and asked me how I felt…that rarely happened and I would rarely talk to anyone how I was feeling but T and I are that kind of veritable friend soul mate..who can call you out, ask you tough questions and you love them for it

W-Who is one of the most generous hearts I know and also has had a ton of experience in Autism given that she has family who are as well. She was the greatest listener and advice giver ever. Having a ton of wonderful matter of fact conversations that helped me better understand what Autism is all about.


In this time period, we also felt the massive and crushing experience of “working” with the school system to get T some help. It blows my mind how often we heard “the squeaky wheel gets the oil”…and they’re right. Chris and I are both very much sit in the camp of you get more bees with honey but this is one example I can truly say, YOU GOTTA FIGHT! FOR YOUR RIGHT…to have your children supported in school. Many parents who went before me with the an ASD diagnosis, kept telling me to advocate for my son. I truly didn’t know what that meant until dealing with his education. It felt like a battle from the word go.. and we have to say we are incredibly fortunate to have a principal we feel supports us and lucked out with an EA who T and another boy share. The key issue..budget. There is 4X as many Autism diagnosis than in 2002 in our province and yet they have not changed the budget significantly to manage how many kids are needing help.This is something I plan to go on a crusade about once we get our lives in order.


Another key change we did was coordinate help. We went to the Triple P parenting class offered by the Geneva Centre for Autism, which I highly recommend for a number of reasons. 1) You get to talk to other parents who are having similar struggles at home 2) The videos might be a bit hokey but they give you great foundations to work with not only your special needs children but parenting in general 3) You start developing a series of strategies for managing through the day to day to keep your spirits high and your energy focused on the positive. We also worked with an Occupational Therapist to look at ways to help him manage (we discovered he is a deep sensory kid and that a really big squeeze hug will help often when he gets overwhelmed). It also explained a lot why he doesn’t like certain textures..(right now jeans are on the outs) as the OT explained for him, its more like sandpaper than comfort..and why he gets really excitable in loud scenarios (his hearing is super sensitive as well) One of our worst moments was in the midst of a fire alarm. A situation I will never forget. The most valuable we are finding is working with a Speech Pathologist. She has made incredible strides with T in making eye contact when he is talking, taking time to think through what he is saying and learning how to be quiet and not talk..something I didn’t realize how important until we started using this as a technique at home. When he is really excited, we put our finger to our lips (for quiet), gesture for him to focus on what we are pointing at and wait quietly while he accomplishes the task. I tell you, getting dressed went from hellish to happy simply by using that strategy.

8-12 months: I think it wasn’t until then that I was actually able to get out the words Special Needs without cringing at the response I was about to get from people. We still get the pity look but I now realize that its simply because they don’t understand. Who I did feel totally got it was all the teachers in my life. One, an old friend from high school, Jamie M simply asked was kind of savant quality had and talked about the 5 kids he has in his class (this makes total sense as he is an absolute ham and would completely “GET” an Autistic sense of humour). The other, my cousin, shared a beautiful poem with us about truly understanding Autism in the form of the Night Before Christmas. It made me cry but also  made me realize how she and many others are part of that quiet strength we have in our corner. Friends and family are what you need to help you get through sometimes. Talking is good.


Speaking of talking, the one thing I can’t stress enough is to keep the dialogue open with your spouse. As I was initially researching Autism, I came across a stat that 80% of marriages with special needs end in divorce. It freaked the crap out of me. So a key thing we concentrated on was keeping our relationship strong to be able to stay strong as a family. We set up and maintained date nights, met at the kitchen table for wine, tears and conversation, banded together to fight the school system. We are (what I would say) one of the strongest “teams” around and even then we faltered on occasion- getting frustrated at each other because of being frustrated with the system or bottling up the heartache we had that life wasn’t going to be ordinary in certain ways. That T might or might not do well in team sports, social situations, school..but talking about it and sharing our struggles made sure that neither of us felt alone in this journey. Check out Our Son Destined for a Team for our perspective on sports.

One Year Later

Life is moving forward and we are seeing some great progress in T’s development.I was starting to feel like he was really behind in the way he interacted with kids but he is starting to integrate a ton better and we are working on social situations. In speaking with his support team at daycare/school, turns out he has lots of friends and in that beautiful way that kids are, when he starts getting upset, they somehow have figured out strategies to keep him relaxed throughout the day. (They gave us a great example of T starting to get agitated and one little girl coming over and handing him a train to hold onto…seriously, I turned into a mushy mess in the middle of the meeting).

To anyone out there who might have recently received an ASD diagnosis, it will get better. You will learn to adjust to the changes in your life and the grieving period will start to subside. You might be surprised by how much of a protector, fighter, lover, or comedian you will become. It will likely change you somehow. If it does, be sure to figure out what you need to get through. For me, its been exercise and laughter and an invaluable support system behind us.

Make yourself strong. Mentally, Physically, Spiritually…so that you can help your kids have the best adventure of their life.

Source: via Christine on Pinterest

Couch-1/2-Tri: Exercise is helping us combat the challenges of Autism

As you will see in previous blog posts, I started running to get over the anger and frustrations I had in learning our son was diagnosed on the Autism Spectrum last year. I ran to let go of all the pent up furiousness and feeling of being completely helpless in  terms of negotiating what we can make happen for our little man.

I couldn’t even get close to running 3km the 1st of January last year. and then we managed through a 5k, 10k and half by October. It’s amazing what a bit of exercise and a new year can do for your fighting spirit.

I didn’t go back to the gym after our half in October. Really didn’t hit it hardly at all throughout the months of November and December, although I ate and behaved like I was still in training. Naturally, the awesome tightness I had developed from all that running went mushy and the weight quickly came back (But I did have one helluva holiday season!)

And so the new year began…full of promise and hope and realization that I will go nowhere if I don’t have a goal to work towards and friends to train with. Fortunately, I have both and my neighbour has agreed to try this one more time. But wait…we’re not just training for a half…NOOOOOO! That would be too easy. We have now decided to join another of our friends to work towards accomplishing a Try Triathalon shortly after the half. An adventure I think it borderline nutty, but one I am excited about conquering.

Getting back into the routine, the better eating habits and the training schedule has felt a bit gruelling..especially as we’ve just returned from a decadent week away skiing, are heading to the south shortly and seem to have a much higher wine consumption interest while hibernating in the dead of winter. I’m not a fan of forcing myself into a cold night either for a run or a swim, in fact it makes me cringe just thinking about it.

Now however, there is something that is pushing me to keep moving forward (aside from my pals). a) I have discovered I REALLY enjoy how I feel once I’ve worked out…getting muscles moving, being more limber, feeling healthier and b) My kids are taking notice that mommy is “doing a great job” of exercising and daddy is “kicking butt” as he ventures off to hockey. We find ourselves looking at exercise as a foundation and lifestyle we are establishing for our kids that will always include physical activity.

Family exerciseIt is so important for both kids- T, who often has a ton of extra energy at the end of the day and exercise helps tire him out in a way that his brain actually shuts down for a bit while he sleeps (You can tell the days he’s active vs not as that’s usually when he’s up at 5am and wants to chat). N, because she’s an energetic lovely little girly girl who I want to grow up in a world where a positive self-image is vital and reflects more so on being fit and healthy than anything else.

This drive for exercise is helping our family and we, as a couple, are growing stronger.  Both physically and mentally. As we combat challenges navigating the world of Autism, it truly does sometimes feel like a never-ending battle. To get the most for T.. to see success, we have to be on top of our game. This is getting us there.

Goals & Autism- It’s all about Changing Perspective

You wouldn’t know our son is Autistic if you looked at him. In fact, you wouldn’t even know if you spoke with him. (Most of the time) But sometimes… when things get hairy, loud, overexciting, you start to see that tiny minute difference creep out in the way he is responding to stimulating circumstances. At that moment, you can almost physically see the switch flip in his brain and slightly cringe at what that means you are about to get next.

Sometimes, its an abundance of energy so heightened that you think he might literally bounce off the wall..sometimes a disconnection to the situation that I often wonder if he suddenly disappeared to a planet all on his own..and sometimes an uncontrollable upset or anger that will take quite awhile to get him back to a calm state. Eventually we do

get him back to calm and move on to the next moment, challenged with figuring out what set him off and what we can do better the next time.

We struggle a lot with how much of the energy, excitement, etc.. is just that of a 5 year old boy and how much of it is Autistic behaviour? As this first year of diagnosis journeys on, I’ve noticed we are becoming far quicker to recognize where the set off points might be and some of the measures we can take to better manage through those potential challenging situations.

A big challenge is when T completely disengages from an activity. At first, we didn’t know whether it was necessary to share t

hat he was Autistic to a teacher, hoping that he was going to be so interested in the activity that it wouldn’t be noticeable. Yeah…no…not so much. We have learned that it is much better to explain than watch them get frustrated with his behaviour, explaining that you need to “chunk” down instructions instead of a quick overview. A simple example would be rather than saying “Get Dressed”, it’s better to say “Put your pants on, your t-shirt on and then your socks”.

Far more successful in solo activities that with team oriented sports (Soccer was a disaster but skiing was phenomenal) my husband and I came to a header this year. Do we or don’t we sign him up for hockey? Every dad dreams of his kid playing hockey but given our experience with soccer, nei

ther of us wanted to endure the frustration and challenges that might come with it. Our comprimise was a Hockey Tips for Tots…it got him out on the ice and learning the technique to play hockey without the actual pressure of the game.

So we took a big deep breath, and bit the bullet. The first practice went about as well as

expected, with challenges in getting all the unfamiliar awkward gear on but then, by the second week, T started asking when he was going to get to play hockey next. We were shocked and pleasantly surprised that he was open to going again. We would watch him as he got on the ice and fall..over and over and over again. But he’d get back up and every week as we continue to go, he can’t wait to get out on the ice and be with his “Hockey buddies”.

Our perspective is totally different than those parents around us. While they want their kids to skate fast and score a goal, we’re ecstatic that T is listening to instruction, managing the drills and willing to keep making efforts towards to getting the puck in the net.We are noticing our “goals” in life are changing but if you saw us watching T out there, so proud of how hard he was working and obviously having so much fun out on the ice, you would have thought he had scored in the final round of the Stanley Cup Finals. And that’s exactly how we want him to feel.

Change is..good

Something’s going on these days..Our beautiful little guy who was displaying significant “behaviors” relating to ASD has been listening, conversing, even engaging us in his thought patterns. Something that up until now hadn’t been that common. I don’t want to get my hopes up but these days I need a bit of hope. Many friends of ours are announcing that they are close to separation or divorce, I have a couple of friends going through serious medical issues and I myself am trying to figure out a few issues physically that I hope I can get resolved soon.

I’m trying to be more positive. Conscious that when T sees us stressed or upset, it only lends to him getting upset. (Which is never good)..We are still adjusting to the changes this has taken on our life but I can see the light at the end of the tunnel. It is so much about the balance within our family. When we are crazy busy or I’m away on work…he doesn’t do that well..but when we are all here and supporting him- he thrives…and that’s exactly what he did this weekend.

We went to the zoo. (Usually an incredibly stressful situation when I have gone along in the past with my 2 children) but something was different this time. We are trying not to be “NO sayers” and helicopter parents and our kids are starting to listen more. The key…we tried a Trust and Go plan with them yesterday at the zoo. I can see our little guy desperate to establish some independence and we are desperate not to have him run away (a habit that he has demonstrated many times in the past) we established rules as soon as we got to the zoo and talked about trust. We gave our T an opportunity to run ahead (which he is desperate to do all the time) and identified markers for him to stop and get a high five…

If you can believe, as much as we weren’t sure about was the best thing for all of us. T got his independence and with a little deep breathing, we learned to chill out a bit and just let him have some fun…