Category: Inspiration

The journey through Autism isn’t always easy

Posted on by laughloveandlife

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.

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

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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

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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…:)

 

Injury and Inspiration-Can I make the race?

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Mother Trucker!

It’s 2 weeks to race day and I have battled a week of sheer frustration. It started about 2 weeks ago. We were on a run and I began feeling a faint bit of anger in my leg as we went along. I was hoping it would be like other instances I’ve had of shin splints, where sometimes just running it out makes the world of difference. But this wasn’t so simple.

This pain has stayed and as we keep training, is becoming a persistent nag in my lower leg and ankle. I have cared for it with icing, elevation, epson salt baths, stretches, you name it. Give me something that you once heard might help shin splints and I will try ANYTHING at this point.

The kicker was this past Saturday. I had put on a compression ankle hold on my left foot which in some ways made it feel a ton better, but as we went along I could tell my right leg was taking the brunt of the run and started feeling the impact on that side as well. By the time we hit 17k, my running partner was well ahead and I just wanted it to be over. By the time I got to the end of the 18km, I asked her to look the other way and bawled like a little girl. Since then I have taken a break from running and have even given in to trying acupuncture for the first time. Good friends have suggested new shoes, others have suggested taping..I will try it all. I just want it to feel better.

I have done other training in the meantime, (swimming and biking throughout this week) but am cautiously planning on trying a run this evening. The weekend also brings a 21k practice run and I feel as nervous as a pre-teen at her first dance.

I’m really trying to focus on the positive belief that I will be ok but have had a few warning conversations from a number of friends/family about not pushing it. That you have to be careful at this point and straining it could cause much worse damage.

I hear that. But I also have an incredibly hard time giving up on something that I have been working towards. We even have a standing joke in our family that the “Powells aren’t quitters”! (Sidenote: This is something my husband actually said to me in the delivery room as I was in labour and about to go in for an Emergency C-Section and yes, I am still married to him…)

It’s true though. We don’t quit and really like to show examples of finishing what we started to our kids. I keep looking at running as a metaphor of what we are going through in working with Autism. Even though you come up to a wall, you have to keep going. If we don’t keep going, who’s going to advocate for my child? I am fighting through this with a determination I haven’t had in the past but I’m not stupid. If it gets too much, I will defer the race but I can’t help looking at so many people who overcome far greater obstacles and think “who am I to cry about a wimpy shin splint”?

If you ever want to feel truly motivated and inspired by what people can overcome…watch this clip of Team Hoyt. (Get the tissue)

[youtube http://www.youtube.com/watch?v=64A_AJjj8M4&w=420&h=315]

We LIT IT UP……Blue for Autism Awareness

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We LIT IT UP BLUE

Autism Support
Light it up Blue on April 2, 2012

As I came home last night and approached our house, the shining blue spotlights clearly made a statement. I love that we chose to do this as a way of showing our support for World Autism Awareness Day. It demonstrated part of our commitment in raising awareness for Autism but in my mind, also made me keenly aware of how different we are from our neighbours. As they went on with their nightly activities, I came home…poured a drink…cuddled into my husband and had a good cry.

I was so overwhelmed by yesterday.

Throughout the day, I felt incredibly proud of how people in the world were coming together on one singular day to raise as much awareness as possible. It seemed every store I had stopped into recently- Toys R Us, Home Depot- there was a message about raising awareness. The Autism Speaks website had an incredible amount of shots of structures around the world Lighting It Up Blue in support. Amazing.

I found myself reading a ton of blogs, following a number of streams on Twitter, posted on Facebook, and received messages of support via email, direct message and posts on my walls from friends who generously reached out to make their statement about Autism.

My heart hurt with how many people wrote honestly and with raw truth on what it feels to be a parent with a child with special needs. The one that hit the nail on the head was 7 Things You Don’t Know About a Special Needs Parent. I appreciated so much what Maria Lin wrote in terms of the feelings you have as a parent in this situation.

When I was online after first hearing the diagnosis, I wish I had seen this. Instead I went through months of guilty feelings trying to get past that life will be different now but not really knowing how to move on. (Thus the running)

I feel like the cog in the awareness wheel is finally starting to move a little bit. That people are more and more aware of Autism (and an increasing number of kids are getting diagnosed with some form of ASD) but they still don’t really understand it. No one really does.

Now I find part of me is filled with an unruly amount of impatience. I want to do something. I want to fix something. I want to see change.

I keep thinking we need to look at things just a little bit differently..to better understand Autism and how it works, we could come up with stronger answers on how to help them manage through the key challenges they have in daily life. I used the example to my husband of one of those 3D puzzles you have in the paper. Looking at it, its just a series of spots..but if you let your eyes relax, suddenly you see an entire picture that wasn’t there a second ago.

I am trying to relax… my eyes…just a little bit more.

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

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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…

Our Autistic son destined for a team?

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I sit here. Watching my guy skirting around the ice, wobbling, “hockey ready” (our translation: keeping the stick aka:weapon on the ground) and holding my breath till he gets off the ice.

T is loving hockey. Like loves it in a way that he will put down the mouse, step away from the computer, go get dressed, stop doing whatever he is doing to happily head to hockey and get his skates on. You can tell he feels part of a team and embraces the notion of having friends at hockey that he loves to see.

We thought because of his enthusiasm, this might not be as bad as we expected..and that he would come out of this Hockey Skills program with the possibility of playing for an actual team…the verdict is still out..

There are good weeks (many of them in fact) as I watch, amazed, as he gets up and falls down, gets up and falls down, tries and retries to get the puck in the net, over and over again with an incredible amount of determination to keep going.

Then there are bad weeks. The kind of weeks were he is all over the place, skating off in numerous directions, nearly pelting his fellow players with his stick, not listening to the coaches, and seeing them get frustrated over his lack of focus.

They know he is Autistic and has trouble with broad or multiple instructions but you can tell with certain instructors, this is simply 1 of a dozen classes they are teaching this week and taking the time to chunk things down is way too much energy. I don’t blame them…most of them are young guys just making cash to do other things and working with a special needs kid is not necessarily something on their agenda. I’m not sure that at their age, I would have been any different.

So we watch, hardly breathing…keeping count of the good moments to compensate for the not so good ones…reassuring ourselves that he’s not the only one lying on the ice, getting into it with another player, or taking off because he simply does not want to listen anymore.

A couple of examples of our not so great moments..

1) The moment I had to run down to the ice to reinforce that your hockey stick should not actually be held like a tomahawk and attempting to show a friend that he was being mean by responding like a tomahawk was not the solution (he was like THIS close to schmuckin this poor kid in the helmet)

2) Having to watch a repeated antagonist (let’s call him a poop disturber) who constantly jars/jabs/hooks kids (especially T)  and then complains to the coach that one of the kids retaliated and pushed him back. Let’s just say I have already pegged this guy as one of the mean guys on Glee who throw slushies in everyone’s face to make up for their own inadequacy.

and a few great moments…

1) Watching the little guy head towards the goal…focused, driven, bound to score…and then he missed…and missed..and missed…but the fact that he would try, miss and go grab the puck to reposition in front of the net until he actually scored was phenomenal and a proud triumph for our whole family.

2) The time where he walked away from that antagonist…just asked him to leave him alone and simply skated away ??? #epicwin

I’m not sure if T will ever actually be a part of a hockey team (if he does ends up participating, for sure he will be a bruiser Defenseman…making sure NOBODY got near his goal) but for now…we have hope. Hope that this is an experience that he can continue to be a part of, not hurt anyone in the process, enjoy and take tremendous pride in what he accomplishes. That’s all we care about. Nothing more.

Well…and I hope if he makes the big leagues that he plays for the JETS 🙂 They are my hometown team after all ..:)

What I’m Thankful For: Twitter to Wine to Work/Life Balance

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I am working on a project all about Thanks next year. I can’t hardly wait…but I have to exercise patience while we wait for people to make decisions, agree to ideas and come to the table with the support needed to make this effort as huge as we want it to.
While we wait, I have been reflecting on what I’m Thankful for after living through a fairly turbulent albeit incredibly exciting year. Below are a few “Thankfuls” I have realized have been a major part in getting me to where I am these days… happy, fulfilled, and getting closer to balanced every day.

From Twitter to Wine to Work/Life Balance, life is good.
  • I am Thankful for a husband who is truly a partner & gets that in this period of our lives he is the cheerleader, supporter, parent, chief bottle washer and laundry keeper upper. These days I have definitely been the worker bee (this pendulum has swung many times throughout our relationship) but I think he sees that I am energized and excited by what I’m doing vs coming home in a big giant stressball.
  • I am Thankful that being forced into a career change has helped create a much stronger work/life balance than I’ve ever had before in my life. I had a friend recently post on her blog about the time element of work/life balance, discussing the fact that you are never really “on” and “off” working freelance or for yourself. I look at it from a different perspective and see all the other positive elements of that work/life balance, opportunities I have had a chance to enjoy since starting up my business again. A few examples…I can take my son to his speech pathology appt every week without having to beg permission or explain to a boss: I have been able to volunteer at my children’s school, which feels good and right: I can choose when to go workout to stay healthy and focused (certain weeks it doesn’t always work, but I am doing it a heck of a lot more than when I was working corporate side): and my overall happiness is balanced and positive..I don’t rush to get out of the house in the morning…I take a deep breath to enjoy a quiet moment at times…because I can.
  • I am Thankful that I am working on projects that truly resonate with me vs. slogging/marketing products for the sake of a paycheque. Figuring out and coming into my own on what I like to do, the strategy I enjoy developing and the social media engagement that plays a major role in my business.
  • I am Thankful for Social Media. I think in a world of working on your own and working from remote locations, Twitter and Facebook is a way to keep in touch..meet around the virtual water cooler and maintain that base social need people have to stay connected. I am also incredibly Thankful for Twitter. In the past year, I have met online and in real life, some of the most beautiful (and hilarious) people I have ever had the privilege of getting to know. I have such fondness for so many of them and enjoy the daily laughter, quips, support and encouragement that these tweeps have sent my way, and I in turn want to do the same.
  • I am Thankful that I can now fit into Banana Republic sizing (They have fabulous work/life balance cross-over clothing for the fabu working from home gig) because of actually getting into exercising and running specifically, learning to endure it and proudly achieving some major accomplishments this year.
  • I am Thankful for wine…this just an ode to the fact that a glass of wine can somehow magically soothe the day away, be enjoyed at a party, insinuate a romantic moment, and be the perfect company to a girls night out…
  • I am Thankful for friends. Real life, got your back, biggest fan, encouraging friends.  I didn’t realize how deeply those friendships went until so many changes happened in our lives. When I lost my job, I got Congratulations : When I decided to start my business again, I got absolute faith that I could accomplish it: When T was diagnosed,  we got “what can we do?”: When I don’t know how to talk about Autism and the roller coaster of emotions I have felt, they have listened, talked, hugged, been a shoulder, asked questions and quietly waited until we have found the ability to ask for help..Those friends have gotten me through so much and I cannot express to them how much I love them but hopefully as they read this post, they realize how very special they are.  THANK YOU.

Goals & Autism- It’s all about Changing Perspective

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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.