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…
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”
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.
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 had the pleasure of attending the Women In Biz Network Conference in Toronto last week, reuniting with a number of “old” friends and meeting new ones. #WIBN has a very soft spot in my heart as it was through Women In Biz that I truly figured out Twitter and via their networking events, have met dear wonderful people who I truly count as amazing friends now.
It helped me realize how very much I am not alone in the world of solo/mom/entrepreneurship and that many of the challenges I face are very similar to what they are going through. What I love about the Women In Biz Network (perhaps because so many of us are moms) is that unlike posturing at other conferences, there is a group of highly motivated, intelligent women, willing to talk about those key challenges and brainstorm together how to help one another. What I have also found was a group of kindred spirits in moms (who are business owners/bloggers) who have children with special needs. They have been a tremendous source of encouragement, comfort, laughter and that much-needed nod of understanding when you are detailing some of the latest challenges you’ve had with the school board. Their experiences mirror my own and help me get through the moments I struggle with.
It was during one of those candid conversations, as we laughed about some of the judgemental looks we’ve gotten at the grocery store, that I realized how much we have changed habits/behaviours within our life to accommodate Autism into it. None of it is really a big deal but when you start adding it up, you realize how many changes we have made to help keep things on an even keel and keep our family strong.
A few changes..
-We haven’t eaten pasta in god knows how long. We used to get upset with T when he would gag out the spaghetti he was eating (thinking he was being overdramatic) until we discovered that texture can be a major issue for Autistic kids.
-My mother loves buying really awesome outfits for the kids but even she is starting to recognize that T just won’t wear jeans and depending on the day, really hates collared shirts (sometimes he will so there is always hope!) His favorite attire, pajamas (you can find him in them at any given time of the day) and he also can be found wearing a long sleeve shirt in the middle of a heat wave. Again as we looked further into this, jeans can feel like sandpaper to a kid with sensitivities and sometimes the long sleeve shirt is a response to his heightened reaction to stimuli. The funny thing is is how often before we better understood this, that those were a root of frustration/anger/impatient arguments in trying to get T to do what he was told.
-T goes through obsessions. First it was Thomas, then Lightning McQueen (Cars), then onto Super Mario. We are used to it. The kids at school patiently say “Yes, we know T…Super Mario and Luigi say ka-pow…as they roll their eyes cause they have heard it every day X10 for the last 2 months”, other people are not, and we see them annoyed/confused/amused by his repetitive conversations or simply stuff like “Welcome to the Thomas and Friends DVD Experience. Please press play to start the movie” We roll with the obsessions and often use it as a reward for good behaviour. Trying to fight it has proven to just not work for us.
-We have become quieter in our house. We’ve realized that yelling or loud voices is one of the worst things for him. We use a lot of non-verbal charades to help slow his brain down and get him to focus on looking at us to accomplish tasks. We also recognize that after a while when there are a lot of kids over playing that he will disappear to go play on the computer. Yes, it’s rude but it’s how he copes and we are totally ok with that.
-We work on patience (my husband and I) daily. We try more now to figure things out. See what’s not working..decide whether its T being a 6 year old boy, Autistic or both. We still have some really sad days (usually after an incident at the playground or after talking to the school board) but we know that if we don’t work together on all of this (as many reports show) we won’t make it. Bottom line.
This journey has taken us sharp left…and it is definitely an interesting adventure. Obsessions will change, behaviours will differ, life is ever-changing and we are learning as we go how to work with it. That’s Autism. A different puzzle (or piece to the puzzle) all the time.
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.
I know this post might create a bit of animosity with certain peeps. You know, the ones who don’t believe in TV..but this is an homage to today’s world of technology and finding a way to live the life of sanity in a world that is chock a block full of flurried activities, kids hopped up on goofballs, media infusing into every dimension of our lives, and the constant desire for “balance”.
So it is here I make the statement, that I truly think the Ipad saved my bacon (or at least for now, my sanity)…and had it not been for its beauty of creating the ability to compromise, share, educate, entertain and satiate the desires of one 5 year old Autistic little guy and his 4 year old bossy boots sister, I’m not sure I would be in such a happy place at the start of 2012.
Here are 3 examples of how our lives have personally changed with the addition of a valuable piece of technology.
Mornings were a disaster. Full of hyped up, non-listening moments of repetitive requests to get dressed, eat breakfast, brush your teeth and get out the door. Usually ended up with a meltdown (Depending on the day it could either be a parent OR a kid- take your pick) but nonetheless, it wasn’t typically a happy experience. But one crazy day in the fall, my darling husband introduced the IPad and the insanely fabulous games it can produce (like Angry Birds) and suddenly our little guy turned into an angel. Why? Because we employed the First (list of all tasks required to get ready for school) and Then tactic (you can have 5 minutes of playing games before we go). We don’t have to give promise playing every morning now, its just the matter of T has started to recognize that good behaviour reaps good rewards and it is working amazingly well.
Any regular kid gets tired of waiting at a restaurant for food. Our daughter is exceptionally driven by food and can turn Medusa on you in a nano-second if she’s hungry (she gets that from her mom) whereas T often finds the crayon drawing papers to be an exercise in frustration as he loses focus quickly and finds challenges when he can’t pick something up or stay in the lines. Enter the IPad, a portable chance for brother and sister to amicably take turns playing a game together, doing word recognition, drawing, spelling, you name it (they know if they don’t play nice its gone) and mom and dad to have a small chance at catching up with each other without having to be on 100% of the time we are out.
Quite often in the past would translate directly to H E Double hockey sticks if I had the kids with me. Imagine Groundhog Day and every time I went, it would be a battle ROYALE…constantly asking to stay in the cart, (or close to the cart), Don’t disappear around the corner- (I grew up with a mom who has the kids kidnapped the minute i lose sight of them), singing ridiculous songs to keep them entertained, begging T not to hide under the cart for fear of appendage loss. The entire experience would have the kids upset, me upset and ready for a drink the minute I walked in the door. Voila, we share the Ipad now with me downloading our whole shopping list via epicurious while the kids play and often we are playing against each other while shopping. This has taken something that was causing me to go grocery shopping at 11pm or to suffer through avec the kids to something I actually find enjoyable with them now.
Yes, I know some of you are horrified that it sounds like I am using the Ipad as a babysitter. Maybe I am but I am doing it responsibly and in ways that help my family manage that illustrious balance we all desire and keeps a much happier group together when we get home. I’m not reaching for the wine and I am finding I am smiling more when we roll into the parking lot after our adventures. Think about it.
** I’d like to salute those who have gone before us without technology at their side. The pioneers of parenthood if you will. I once asked my grandma how she managed to raise 4 kids and stay relatively jovial..her answer..”Sometimes, you’d just have to leave the kids with the neighbours, go for a walk and treat yourself to a glass of wine”. Grandma, I’m in!
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.