#Autism makes us perfect for the Amazing Race

To all those Autism parents out there, we’ve done it.

We applied to become competitors for the Amazing Race Canada.

Many people have asked us why on earth we would be interested in going on a show that often displays couples at their worst, creates tension in an otherwise happy relationship and puts one through a series of rigorous challenges that pushes you well beyond your comfort zone.

Why? Good question.

Because we believe that living life to its fullest requires going for adventure; pushing yourself to your limits often and being proud of whatever it is you accomplish.

Because if ANYTHING has shown us to keep things in perspective…its Autism; to live in the moment and to stay positive in the face of adversity…It’s Autism. Daily we have found the humour in every situation…in its purest form….through an unfiltered mouth and an innocent mind. If we let things get us down, we wouldn’t be near in fighting form to accomplish this goal…but we have committed to each other to always be talking, always be behind one another, always helping each other get through those crap days.

IF we get selected for the Amazing Race Canada, we would be thrilled. Not just for us. But for the potential of “representing” our parents who are going through the same thing we are and demonstrating JUST how kick ass all us Autism parents are!

Check it out here…(and feel free to share!)

[youtube http://www.youtube.com/watch?v=rylnu_Vc_HA]

Autism has changed HOW we are..

I like looking at a glass half full. I believe everything happens for a reason. I always try to stay positive within a situation.

Wish is partly why I haven’t written in a while. I didn’t want to be a disability parent who just mopes around all over the internet.

6 words.

“There’s Something Wrong with That Kid”.

Those words took down a 250 lb linebacker of a dad and a (we really don’t need to talk about my weight) pretty strong character of a mom.

It was at a hockey practice with our team and the other team we played earlier in the day. They didn’t know T had Autism. My husband was on the ice to work with T and other kids from our team to help them. T was tired and started meandering aimlessly through the practice, having a hard time staying on task and completing the necessary drills. They didn’t realize my husband was T’s dad and after watching a particularly challenging exercise,  one coach made that comment to the other.

Chris, my dear husband, protector of our family, hit a complete crossroads at that point. He was proud of himself later for not slugging the guy right there on the ice and totally disappointed that he didn’t get a chance to punch him in the face. Amazing isn’t it how one phrase can stir up such intense emotion?

Original source: Arham1234 on Fanpop.com
Original source: Arham1234 on Fanpop.com

You see, it’s starting to show that T is different. Up until this point, we kind of flew under the radar. His outbursts of movie content, overly sensitivity when someone yelled (he actually told a hockey mom once that she needed to stop yelling at her son and that made him “VERY angry” – clenched fists and all), kissing and hugging (inappropriately) friends, parent of friends, teachers, daycare providers and his speech pathologist kind of came off as endearing and young. So much so that we were often asked if we were “sure” that T had a diagnosis of ASD.

In some ways, he is doing a 1,000 X better in terms of social. The new WiiU he got for Christmas has allowed him to engage with his friends in something that he loves to do and is proficient at so that he can provide advice to his friends and find a way for them to play together and on the same team. But he is also starting to demonstrate those tell-tale signs of Autism- he doesn’t connect with how loud he is, can’t quite gain control of physical responses and often “over does it” when excited or stimulated, he gets very upset if you get angry with anything (most recently it was a friend’s dog who he adores that was getting into trouble for eating off the table), and his friends are noticing his repetition, nonsensical statements and lack of interest in common games typical of a 6-year-old.

On the bright side, he doesn’t lie, has a laugh that is so pure and honest, you want to bottle it up and save it, and his empathy is such that he spent an entire period of hockey making sure that everyone was ok who had fallen down.

This is yet another phase we are learning about on this journey and what we have recently discovered is that it doesn’t define WHO we are but often does define HOW we are.

And part of HOW we are going to be is to always try to stay positive, and overlook the times when people are ignorant in what they say but at the same time are telling the truth. There IS something different about him.

Something awesome.

Thinking positive- ASD

 

“Hockey Ready” for Autism?

T over here while the play is the other way

We managed to avoid it last year. The whole notion of T joining up for hockey.

As a number of our friends registered, we were just in the throes of a fairly new ASD diagnosis…trying to figure out what exactly that meant, how to help T, how to make sure we survived as a couple, and so much more. We were definitely not ready to face another “team sport” challenge (soccer had been an epic fail the year before).

I had designed T’s entire room in a sports motif, full of references to hockey, baseball, football…and he couldn’t care less.

But then a good friend of ours gave T a poster of players from the Toronto Maple Leafs which we put in his room and out of nowhere he started to show interest in hockey. As we often have experienced with Autism, he also tends to obsess and suddenly became obsessed about the 4 players on the poster, reiterating every night their positions, their names and talking about the people behind them in the stands and even what they were doing.

So this year, when T asked if he could play hockey, we tossed and turned, discussed, debated and eventually decided to take the leap and sign him up.

We had no doubt that he would enjoy playing hockey (over the past year we had done a hockey fundamentals program which taught the kids how to skate, how to hold the stick, how to turn- he loved it) but we weren’t sure of our ability to not get frustrated as we watched from the bench.

We were warned by other parents that many kids get out on the ice and spend more time gazing at the ads or the scoreboards. They were right.

The first game brought an overwhelming series of emotions. T was so incredibly excited to be out playing hockey. Dad was so very proud that something he thought we would never see (T playing hockey) was actually happening. I was a bundle of nerves. So proud of him for getting out there and doing something he wanted to and absolutely crazy over the fact that every time the puck came by, he would be oblivious to it. He just skated and skated and skated (he’s not great at stopping yet) but his delight coming off the ice that he played hockey was worth every hair pulling moment throughout the game.

I know we are just getting into the season and this is a long road ahead….I know I will be biting my lip through every game…wishing and hoping that he finally gets into the game that he loves talking about so much.

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 bed..to 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.

Warning: Acting like you’re 17 can have adverse affects on your health

So I thought I was being wimpy.

We had bought this boat to rediscover the hubs and I’s love for watersports and felt it was that time to get the kids engaged in a whole new different world at the cottage. I grew up waterskiing every weekend and couldn’t WAIT to get back out on skis. So we dropped the boat in on May Long Weekend and I braved the water temp to enjoy one of my favorite feelings of all time..the tug of the boat, the speed, jumping across wakes and going slalom…ahem…wait…did you say slalom?….Did I forget the fact that I haven’t skied in nearly 15 years…??

N and her fave part of summer. Getting thrown in the lake

As I got up on 2 skis, my arrogance  and adventurous nature of youth came careening back into my soul and I somehow forgot that I am living in a 37 year old body and instead felt like I was about 17 again. Not a problem unless that exaggerated sense of competence leads you to believe that you should drop one ski the first time out in said 15 years…so as I come sailing by the dock I think, “I can do this!!”  and promptly loosen out of one of my skis…and then promptly have one of the wickedest falls of my entire waterskiing history. 🙁

I felt a slight ache in the back of my leg but didn’t pay much heed to it until we went tubing later on…crashed (in a fun, “OMG I feel like I’m 17 again”, weeeee kind of way!) and hit the same spot on my leg.

That was May 24 and when I started out running the next week to maintain our training schedule for our next half, I just couldn’t do it. Everything about my leg felt sore and painful. I talked to my physio, went to massage and Active release therapy and nothing was fixing it. I just stopped running. Even walking or sitting in a chair was enough of a trial that I realized I had tweaked it somehow and needed to give it rest.

But here’s the problem with summer…with summer comes fun, food, drinks and parties…missing out on the exercise that counteracts all that fun gains you back the pounds shed over the last year and a bit. We all know it’s a cycle, you are either on the healthy train or you’re off and with this injury I fell off…and how! I ultimately went for an ultrasound on my leg and discovered I have torn my hamstring in two places. What does that mean? 8-12 weeks of recovery and physio to get it back in working order. I am starting to come to terms that the half I had planned is not going to happen but what I NEED to do is get back on the train.

So today I went out for my first run this morning since the week after May Long. I accomplished 2.5km…

At first I thought..2.5k? Yuck! I’m starting all over again. And then I realized..”Hey, I’m starting all over again…if that’s what it takes, that’s what I’ll do as long as I am doing!”

The other thing I realized is that part of why I haven’t been writing on the blog is because running always helped me decompress, sort out my thoughts and decide what I wanted to write about. Without that outlet, I really feel like I have been lost these past two months.

I have bought my ticket and I am getting on the train (I look at it that I was temporarily in the station). The journey feels like it will be longer this time but look forward to what’s next in the adventure.

Magnum, our friends dog getting the most out of the boat

The Summer of New Adventures

I honestly don’t know if summer could get any better. We have had the amazing good fortune of having beautiful weather, incredible friends to hang out with, a cottage to escape to and now a very cool motor boat to start our next chapter in adventures at the lake.

It didn’t start out that way. There was a significant number of times at the start of this year where when we went for a ride , it took an incredible amount of time convincing T to even get in the boat. Then it took a lot to convince him to go faster than a put put pace. My husband and I started looking at each other with a “wow, seriously? Could this be the biggest waste of money we have invested in…ever”. We weren’t sure what to do to get him comfortable with the boat (after all, this is a little man who has an auditory sensitivity to loud noises and we’re asking him to sit in a motor boat for goodness sake!)

All I can say, is that my dear husband gets the most brilliant solution award for this one. I don’t think I give him near enough props for how patient and creative he gets in working with T on challenges/resistance he faces but I am truly impressed with how he handled this one. He made sure T felt like he was in complete control. He talked through what the experience of being on a boat would feel like and then ultimately T would give a thumbs up or thumbs down depending if he felt things were getting a bit fast or not.

It took awhile as T got comfortable and once he was there, we started working on him to think about the 3 person tube we have to go on the back. Same situation, talk it through, start slow, he controls his comfort zone…That started in June and now he loves it when dad goes fast. This is so reflective on what its like every day with #Autism. If you prepare them, talk through what to expect and help them plan for the day. If you don’t give them that framework to understand, more times that not, it’s a disaster.

Just keep talking….

Next up, waterskiing…:)

Simple details can help make the world of difference in prepping a child with ASD

23 Years Later and I finally finished what I started..

It took 23 years to get there but I finally finished what I started.

I am pleased as punch to report that I passed my Bronze Medallion final exam yesterday and received the elusive Bronze badge and medal that I had originally started going for when I was 13 years old.

and now the question I have gotten ALL the time?

WHAT possessed you to go and sign up for a class where you are older than even the teacher by 20 years, get to hang with the 11-14 yr old/pre-pubescent, like “Oh my GOD, he’s sooooooooooooo cute” set, force yourself to accomplish endurance tests that aren’t necessary and receive a qualification that would only be good if I suddenly decided to change careers, channel by inner Baywatch star and become a lifeguard?

3 Reasons

1) Because I had quit…when I was a kid and it really has lurked in the back of my mind for this many years and I wanted to show my kids that regardless of the time it takes, it’s always worth finishing what you started.

2) Because I am continuing my quest to show my kids healthy living and next on my to do list is a Try Triathalon and the Ottawa Army Run in late September, so working towards endurance in the water fits perfectly in my training plans

3) Because I have this silly list…a plan of things I was going to scratch off before I hit 40..it’s not 40 that’s the issue (at one time, I wasn’t sure I would get past 29 with the kind of adventures I was having!) It’s the list..Of things I really want to do…to take life fully by the horns and live every day as fully as I can. I have scratched a few so far- motorcycle license, bungee jumping, zip lining, parasailing, scuba diving, surfing, Italy, Spain and as of yesterday, my Bronze Medallion.

The catch is, I have a TON more on my list and find with having kids that my nerves of steel are starting to get a lot more like rubber..torn between making smart decisions that won’t put any of us at risk, and wanting to lead by example to my children to go for the adventure, do something that scares you every day, take the bull by the horns. I want them to go after what they want. To work hard and reap the rewards. To never believe that they can’t do something. If I can get that through to them, it’s one of the most important lessons I can pass on.

I’m not sure which adventure the list will take me next but I can honestly say…its something already starting to percolate in my head.

Trying to talk Teenage while crossing off my list

So here’s the scoop…

I started my Bronze Medallion at the St. James Civic Centre in Winnipeg at age 13. I have absolutely no recollection why exactly I didn’t finish the course but life somehow got in the way and I didn’t think it was a big deal to not complete.

I promptly forgot about it for the next 17 years. But like getting my motorcycle license, it was has been on a particular list in my head for years. A TO DO I wanted to complete, something in the back of my brain about the fact that I never actually finished something I started. So when my running partner and another equally fabulous friend decided that we should go for a ‘Try Triathalon’ this summer, I somehow found the perfect training ground for the endurance swim that we would have to accomplish on the Tri circuit…AND finish something I had always meant to. Killing two birds with one stone per se.

So I signed up. But what I DIDN’T think about is that I might be a little older than the average participant in the Bronze Medallion course. Hilarity ensues at what I am now affectionately calling the Social Experiment.

I showed up the first week having no idea what exactly to expect and ran into another mom at the entrance, asking the direction to the Bronze Medallion class. I sigh with relief and say “Oh, are you taking the course too? That’s great! We can be partners!” (maybe a bit too enthusiastically). She promptly looks me up and down and says “Uhhhh nooooo, I was checking for my 11 year old son” ..11? They are seriously as young as 11? You gotta be flippin kidding me!

So I walk in to the theory part of the class and it is me and 20 11-13 year olds. I go to my mat (yes,mat…cause young people can sit on mats for 1 1/2 hrs whereas us evolved really do prefer a chair) and we are subjected to 2-18 year old instructors who truly believe that yelling at us is the most effective form of teaching (Umm, yeah: intro to management course!) We then go into the pool for the next hour and a half and have to perform varying acts of self-rescue and rescue techniques. Fabulous if you have a butt who has not experienced any form of weight gain, child birth, age in general. Not so fabulous as you have to huff out of the pool as if you are climbing out of “mock” ice break incident and thinking really…how much cheek did I just show these poor kids?

I find it a challenge to relate to these young bucks. There are some seriously hilarious conversations I have been witness to, laughing to myself MANY times throughout this adventure and wishing there was someone there I could share a snicker with. My favorite conversation so far was one of a girl asking everyone in the class where their family background was from. As she went through the line, Ukrainian, Polish, Scottish, etc…she came across a guy who indicated his background was Indian and Dutch. Her response “OMG! That is sooooo sick! (Thought sick was out by now?)  I would love to be Indian but I don’t like Indian food!” COMEON! This is the future of our youth today?

I am now in my 5th week of the course and have found a camaraderie of sorts with the girls in the class…In part because of an exchange of discussing the Hunger Games (OMG! I SO think Gale is cuter !) , part because I know a lot of answers to the quizzes when we are practicing for a theory exam. I have 4 more weeks to go and then I will have completed that elusive certification. As much as I don’t get the kids in my class, it was totally worth it. I completed a 500m endurance test today as part of the qualifications and was beyond excited to NOT be the last finishing the laps. This has been a lesson in connecting with the younger generation, age discrimination, weight discrimination, staying cool in the height of an emergency and staying focused in managing through a crisis

I am particularly proud that I will be able to pass on this “completion of starting something” with my kids and only hope they can take cues from the fact that mommy will never quit unless it’s really serious. In the meantime, get out and swim…it’s seriously one of the best forms of exercise I have ever been a part of.

Here’s to the next one…

 

Come before winter. Do what you need to do now, before it’s too late

This has been a heartbreaking season for many people dear to me. Every week it seems, we are talking with someone who has been dealt a huge loss or going through the stages of a terminally ill friend/parent/loved one as we get closer and closer to Christmas.  We try to be as supportive as we can, wishing we had those perfect words of  comfort to help the people we love but its hard to find exactly what to say.
Hearing news like this often causes reflection on your own life, thoughts of mortality of people close to you, how you are running your life and does a great job of kicking you in the ass when you need to keep perspective on what’s important. What we have realized is most essential for our happiness is spending meaningful moments with the people you love and telling them what they mean to you. No words left unsaid.
My mother in law recently went to a hospice workshop in which the speaker quoted
a line from the bible that (even though I’m not religious) has become a bit of a mantra for me as of late. He talked about losing his daughter and the importance of recognizing that life is too short. He quoted St Paul who (knowing he didn’t have much time left) wrote in a letter to Timothy ‘Make haste and come to me quickly..Come before Winter’.
This resonates with me so much as we navigate through the waters of parenting and parenting special needs in particular. I easily get caught up in feeling the need to clean the house, or organize parts of our lives but am steadily realizing that as I’m focusing so much on maintaining order in our world, I’m missing out on a ton of just having fun with my kids. (Something I am sincerely envious of my husband’s ability to do and boy! does he ever do it well!)  Taking this into consideration, instead of figuring out my to do list the other day, we randomly went to a movie at 2 in the afternoon. To say the kids got a kick out the fact that we were the only ones in the movie theatre is an understatement. That moment was FULL of giggles and joy as we sat through a personal screening of Happy Feet 2.
I am now realizing that I have put off a ton when I was stuck in corporate schlock-land and am hell bent on changing numerous parts of my life. First off, running…
I thought one half marathon was what I needed for my bucket list. That after I accomplished that I didn’t need to do it again. But I’m hooked…I’m missing the discipline of training, and feeling slumpy after having felt so fit for awhile.
I have been inspired by so many stories as of late of people who have just “done it”, “gone for it” and “proven to the world that they can…that now I am intrigued about what else I could do in exercising…My girlfriend has suggested a Try Tri and I am seriously thinking about going for it.
The second, believing in our idea and not letting ups and downs of a challenge bring you down but more focusing on what needs to happen to make a dream become a reality. That Operation Thanks, a project we have designed to say Thanks to the Canadian Forces next year is truly going to be the most epic movement of pride and nationalism, Canada has experienced since the Olympics.
The third, and this is starting to get easier…to relax a bit on the need for clean and tidy and just let go…spend the kind of quality time our kids need to thrive and focusing on what kind of moments we can make together. To help them dream as far and wide as they can and believe that they can do anything.
And if you think you need a little motivation to conquer a dream…watch this.. youtube.com/watch?v=gZ8Ttq…

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.