A much needed TIME OUT to keep in the game

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

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

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

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

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

Part 4: Friends started asking how it was going, how T was doing, how our family was doing. I struggle often talking about Autism (except ironically online) because I don’t want it to consume our life. I don’t want it to be the only thing people think of when they look at T and yet, I want it to be a comfortable piece of conversation that is shared between our friends and family. I started to say something but couldn’t get the words out without that evil lump in my throat showing up. I’m not exactly sure why I started sobbing except that my energy felt it had hit an exhaustion point and my  heart-felt that it was physically aching. I said I was worried. That I felt like I wasn’t sure we were doing enough, that I hated thinking about how hard he might have in trying to connect with people growing up, worry about him, our daughter and making sure she is fairly and evenly cared 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.

Strength in your relationship will give you the energy you need

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

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

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

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.

Looking at the Bright Side


I didn’t want to write last week because I had hit an incredible downward spiral of sadness. I couldn’t even figure out WHAT exactly it was that was making me SO depressed…I just kept launching into teary, almost can’t breathe convulsions…an ache in my throat and in my heart so vivid that I started wondering if I was manifesting some crazy physical ailment from keeping everything inside.

You see, my intent with this blog was to help people stay positive in coming to terms with a child who has special needs. When I was searching the blogs initially, I felt like there were two kinds of bloggers…those who gave the raw straight up goods (which was causing complete anxiety  on my part) and those who kept focusing on how beautiful, bright shiny star and loved their children were…(I would kind of hope everyone feels that way but I think it was the stay SUPER positive coping mechanism)

I have seen a number of parents through various “resource” meetings we have gone to, either angry, confused, sad, or frustrated. I haven’t seen that super positive but then again we are all at the beginning of this.

The truth of the matter is, I have been through challenges in my life… and fought through them. But this experience of discovering my child has Autism, is something that caught me off guard, threw me for a loop, kicked my ass and no matter how much “fight” I have in me..obliterated all the positive for awhile. But I’m back…hiking up the hill on this journey focusing on What’s next vs. the Why..

So what caused me to totally lose it last week? Completely… confusing my husband as to why his usual bubbling wife kept falling to pieces in a heap on the floor?

I haven’t been talking to anyone about this. I didn’t know how to bring it up…

I WANTED to talk about it with my friends but didn’t want to become that friend who only ever talks about one particular piece of their life and trying to explain all the ups & downs we have gone through already…I felt ashamed to admit that I was having a hard time dealing with the term “Special Needs” (given I grew up in an environment where both my parents worked in a sector of government that supported “Mental Retardation”.)…and those Special needs kids were very different than my son. I felt like a number of my family members just didn’t want to accept it, and I don’t think I did either for awhile…

And then a beautiful friend sent me this out of the blue..

I just wanted to say that I hope you realize that you don’t have to be brave all the time. That you don’t have to put a smile onto all the shit that has happened. I know you have to deal with it and I know you will, but I hope you know that I am here for you and if you’ll let me, I will be that person that listens to all of it, all the tears and the rage and the anger. Anytime. Always. You know there is no judgment here, that is the thing I hold onto most sacredly in our friendship. I know you have to move forward, but those moments of letting it all out are part of saving your sanity and I want you to know that I totally understand. And I’m totally here. 

It was exactly what I needed to hear. Someone there to listen, no judgement, and accepting of all the stuff I needed to say. If you are overwhelmed and on this giant learning curve, remember to keep talking. It will get you past the tough and keep you focused on the positives all those great bloggers were writing about.

Competition is fierce..

This feels true on with so many elements of my life right now. The good side of competition..My friend and I have actually managed to start running and are currently out there every few days trying to get our groove on and waiting for this fabulous running high that is so famously talked about…Instead our comments are mostly, “Oh my god, my legs feel like lead” or “are we done this round yet?”

See part of the Running Room philosophy is working your way up to your goal distance and then exceeding it so you are not dying at the end of the race. Our goal is 5k and so far we have done a number of runs at 7-1’s…which means we run 7 minutes and recover for 1. Repeat. Except now are we on 10-1’s…& that sudden jump to 10 minutes of straight running has totally kicked my ass! But here in lies the good part…my dear friend is highly competitive.. and while I didn’t think I was that much, I find that I am enjoying her need to compete as an incredible way to egg us on and keep us going (cause there is NO way in hell either of us are going to be the one to give up first!)

The dreaded 10 + 1’s weren’t as dreaded as I thought but I also am noticing that I am out of breath by the time we are finished…(I think our pace got faster and faster as neither wanted to be the “Lagger”) which is good right? They say getting your heart rate up is key to getting healthy and staying fit. Quite hilarious given that its taken me until I’m 36 to realize that perhaps healthy is something we should have been concentrating on. This has been largely motivated by feeling like we need to be an example to our kids vs. heading down to the couch and throwing on the TV/PVR. We have been witness to WAY too many kids shockingly overweight at such early ages in their lives, and are keenly aware how easily it can happen to our children. So we are bent on getting healthy.

My husband is back playing hockey, I’m doing running, the kids are in swimming and gymnastics and we have lots of plans for exercising this summer..& another part of the competition? In an effort to stay grounded through everything going on with our son, we are working hard at maintaining our relationship (we had read odds of increases of 80% on the possibility of divorce with a special needs child). So we have upped the date nights, set aside time for conversations that are painful but essential and are working together on this weight loss drive..part of that is agreeing to meet weekly for a game of Squash at lunch hour..and it our first one today was awesome! Nothing like two parents completely frustrated with “systems”, red tape and bureaucracy having the chance to WHACK a little tiny ball HARD against a wall…over and over and over again…HIGHLY recommended.