The Story of Jenna

Jenna came to us as an occasional babysitter when the kids were very young. Back then she was a vivacious and quirky 14 year old, full of spirited energy and often showing up with her best friend with some off the wall on what they could do with the kids for the night. Those early times were quite the adventure as it wouldn’t be abnormal to come home to an arts and crafts hub, mani/pedi spa, bathroom explosion, mud party, dress up dance party and more. Jenna won our kids over with a sparkle in her eye and a smile that is absolutely stunning. She was amazing with T & N and we really felt comfortable having her sit for us.

So comfortable that when the situation arose the next year that we would have to look into full time care at home for the summer before the kids transitioned to a new daycare  (& Jenna was looking for a job) it became a natural fit to hire her as their “nanny”. We had just left a daycare where T was having an absolutely horrible time (see The Importance of Routine and Sensitivity of Sound for children with Autism) . He was undiagnosed at the time and was constantly getting in trouble with the centre for either biting or striking out at kids.

Hindsight being 20/20, the incidents were always happening around the time that free play would occur (when children were given no direction) and when they opened up the room from 20 to 40 kids. T often shows signs of sensory sensitivity and that much noise just became something he couldn’t handle and no routine absolutely threw him into a free fall.

If only we knew that when Jenna took on the job to keep the kids entertained and busy throughout the summer. We went to Scholars Choice. We got lots of crafts. We came up with adventure ideas that Jenna could do. We DIDN’T have a clue that T was Autistic. We just thought he was going through a phase. (I still remember one particular day, T kicked her and had a total meltdown- Jenna’s dad (now close family friends) let me know she was done. She wanted to quit. I was devastated. Fortunately, her dad is a pretty excellent voice of reason and managed to convince her to stick it out.

THANK GOD. The summer ended up being a helluva lot of fun. As I was just starting my business and was flexible in hours, we ended up on a number of adventures hitting up the Zoo, African Lion Safari, Canada’s Wonderland and more. It was a blast and Jenna added such a great dimension to every trip.

The following February we went for a developmental assessment and received the diagnosis of ASD. Jenna got busier as we reached out to her to help cover for the parenting classes we went to at Geneva Centre, the support group meetings we attended, the support group we created, the school meetings and date night. A weekly/bi-weekly effort that became constant in our lives to help maintain our relationship while navigating this new one.

Throughout these years, Jenna has never changed in the way she played and dealt with the kids. She is our steady, consistent support that bar none helped T (& N) stay relaxed at home and gave us the chance to get out and take a deep breath when we needed it. This past year, Jenna decided to do her co-op in an Autism class for her final year of school and she got to know more children with Autism, their particular pieces of the “puzzle” and the wonderful ways so many of these kids use to show they care.

Jenna is now 18 years old, a little quieter, an awful lot more mature and still has that sparkly smile. She is leaving this week for college to take Special Education as her major. Something she shared was inspired in part by being with T all these years. She has gone from babysitter to child-sitter (N cannot STAND Jenna being called a babysitter anymore) to an incredible friend. We’ve had a chance to enjoy an outstanding dance show together and even went skydiving this past June with her mom and another dear friend. We are so sad to see her go but beyond excited for the next chapter in her life.

We will miss you Jenn…Xo

 

#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

 

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…

Original source: Fanpop.com

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 forward..one 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”

Original source: fanpop.com

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.

and T…I LOVE YOU SO MUCH….

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 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.

How training,hard ass coaches and mantras helped me finish the race

We did it.

Half Marathon Start lineEven with a case of monster shin splints and a cold day of…I am proud to say I accomplished my second half marathon in a time of 2:07.

This was the first time we had trained with the Running Room in terms of the half and man! was it ever different than when we did it on our own.

On our own, we did most of our runs in the am..pushing each other to get up every one of those mornings to go forth and run. We ran into a few issues…our backs each gave out at one point in time or the other, I totally had visions of a serial killer stalking us in the park when we ran at 6am, heavy heat and humidity left us in dire need of cold showers as soon as we got back in and we compromised on distance, pace, and amount of runs per week. Our first half was in October and we finished in 2:12.

This time, we decided it was worthwhile following an official running program and training with an organized group. Our group leader was Stephen. Hard ass, no mercy..Stephen’s focus was about being supportive in that military kind of way and pushing you to get to your personal best. There was no “compromise” with him. Instead, he would drill into us that if we did not believe that we could accomplish our goals, then it was only our own heads getting in the way. Stephen is somewhere in his 60’s and just ran the Boston Marathon. If there was someone I have met recently who simply commands respect its him…and as much as he would yell at us to keep going and work hard, it was because he really wanted us to be proud of the training we did to get there.

The half we chose to do this time was filled with sweetness as the Mississauga Marathon was the very first 5k run we did last year and we were coming back to do the half.

We felt nervous but ready…a bit unsure of where our time would net out but focused on trying to run our own race. (A couple of days before we started debating heading to 12:1 or 15:1 Run/Walks…in the end, we agreed “why would we invent a new program when we have been training with 10:1 and that has suited us perfectly).We ran together to the 16k mark at which point, my running partner Jen went on ahead. I started slowing up a bit and feeling the aches of the shin splint and ankles I had been working so hard to avoid the previous 3 weeks. By 20k, I was chanting my mantra (the list of kids names I know who are managing through Autism- when I get into challenges, I keep thinking if they are expected to fight through everything they will have to, I should be able to get through a stupid run) Tired and Sore, I debated if it was worth just walking to the finish line?

And then my brilliant, most amazing, most outstanding husband did something utterly perfect. He set up our two very loud and very proud kiddos at the last km mark to get me through to the end.  It did just that. They cheered, I teared and came in to the final stretch strong and so happy to have achieved my personal best (So far!)

I thought this would be a one time shot. To scratch off my bucket list and keep heading to new adventures.

Who knew that this might actually be becoming a habit? and one that I am really starting to enjoy…:)

 

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…