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!
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.
“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?
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.
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.
Ask any parent who has two kids, one autistic and one not and they will most likely respond that one of their biggest worries outside of managing ASD is making sure that the other child feels equal in the love, attention and energy you can provide to your children.
I often worry about my little girl. She is the 5-year-old, very gregarious, dynamic drama queen and often a bit bossy younger sibling to T. I don’t think she is intentionally bossy. More likely that behaviour pattern comes out of her mirroring what we say or how we interact in working with T all the time. In order to create interest/action that really resonates with him and help him establish what the “rules” are within the house, socializing and day-to-day functioning, we are often repeating that same conversation.. That repetition has created a little girl monster… hands on her hips, blurting out statements like “T, Look in my eyes..good looking!” and “Good job T, I’m really proud of your smart decisions”.
She is wise beyond her years. An old soul.
I think all the time about what is going through her head?…How much she understands now that T is slightly different? When will she start asking those tough questions? When do we explain Autism to her?
Is she getting enough attention on her own or is she dramatic as her way of seeking attention we have been neglecting to provide her?
My belief is to make sure both our kids feel that infinite love we have for them and never that it’s some sort of competition on who carries mom or dad’s heart with them.
Which is why it was a welcome opportunity this past weekend to enjoy our very own girls weekend as dad and T went up to the cottage.
It was a lovely time spent shopping, cuddling on the couch, watching a movie, heading to a birthday party and stopping by a local street festival in the rain. An event that had my little girl shakin her bon bons and soaking up all the awesome music we were witnessing throughout the day. Couldn’t be more proud.
By Sunday, I was madly smitten with that little girl and wondered what I could do to make it a really lovely morning. So I hunted down a little heart shape mold and made her heart-shaped pancakes. She was thrilled and as we sat there eating our pancakes in the quiet of our house, I thought about how nice it was to just have a few minutes with just her and I…ssshhhh quiet…amazing..:) We might someday have up and down roller coaster relationships but for now, I will love that Bestie roll we are playing together.
and then she said “Mama, I love you…you make my heart so full…just like these pancakes”
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.
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.
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…??
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.
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.
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 for..my 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.
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.
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.
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.
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?
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.