The Story of Jenna

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

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

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

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

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

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

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

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

We will miss you Jenn…Xo

 

LOVE is what gets you through Autism

There’s not much I like about Autism. 

Trying to understand why T does some of the things he does: where he goes when he disappears:how to help him when he gets really upset: how to make sure he isn’t aggressive with other kids: navigating the school system to try to get him support: the repetitive, obsessive behaviour: ….and let’s not forget the over stimulating, sensory sensitivity that often starts our day off ridonkulously early…

Original source: Fanpop.com

I wouldn’t say that I have found the silver lining in why any of this has happened…we have accepted it and we are moving forward..one day at a time. Yes there are crap days where I feel depressed and sad and wish this wasn’t our fight but there are also some beautiful days…one which I think, if T DIDN’T have Autism, if he was just like any other boy, would he be doing what he just did?

That is exactly what I thought this morning as he woke up (at a reasonable time for once,not the 5 am since Daylight Savings) came into the living room and cuddled up close. And said what EVERY mom craves to hear from their child…

“Mom, I love you so much”

Original source: fanpop.com

You see, right now, T’s repetitive habit (because they change like the season) is to tell everyone that he loves them so much and he is going to “squish you like a bug” with his face all cute and squished up and then asks for a big, big hug.

I know this came from one of his daycare providers who he absolutely adores and who has a particular bond with T, and who says both of those things to him often.

I’ll take it! and so will my parents, my husband’s mom and every one of our friends who he has now said “I love you so much”.

Because he is a genuine, sweet little guy and when he says it to you….it is so very heartfelt and makes your heart skip a beat out of pure love right back to him.

So as much as at times, this journey can suck (as it does for all parents)…for this moment, I will happily enjoy this aspect of Autism.

and T…I LOVE YOU SO MUCH….

Love and Autism

How Women In Biz helped me open up about Autism

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.

Original source: http://www.theshirtdudes.com/monopoly-change.html

To Oui or Not to Oui?

That’s OUR question..

We talk often about our victories and challenges with our autistic son but we haven’t written a lot on our daughter, N. N is a gregarious, lively, effervescent little 4 year old. She might occasionally be accused of being a bit of a drama queen but her endearing kindness and generosity of heart is something we are so incredibly proud of, we surrender to the “fancy pants” nature of her dramatics and just let her be.

She is too smart for her own good. We have been told more than once that she’s a chatty cathy at school, more so because she’s bored with the curriculum than disrespecting authority. She is extraordinarily creative and is constantly creating her own songs, painting pictures, telling us about the gang of imaginary friends and what they are doing “hanging out” in her room.

All this to say that we are now at one of our first mega cross roads in making a parenting decision that could significantly affect N’s school career and either put her on a path of great success and adventure or have her starting the list of “things my parents did to make me turn out this way”. The decision?

French Immersion.

I know…this is truly not the most agonizing decision a parent needs to make but there are a lot of little pieces to the puzzle that are effecting our decision on this. In part, the decision is being swayed by the fact that N has an autistic brother… very close in age that (over the past year) has really grown into a reliance on each other that I’m not 100% sure we want to change anytime soon.

The Pros

  1. Establishing learning of a new language which could greatly assist in career decisions, travel, and so much more
  2. Learning french at a young age would potentially set her up to be capable of learning other languages easier as she grows up
  3. This could provide her the challenge she needs to keep her engaged and enjoying school
  4. This could be something that is hers…and hers alone. I often worry about her getting her fair attention from us. We are so very cognizant these days of making sure SHE gets big props when she accomplishes something, gets alone time with each parent and even gets disciplined in the same way we treat T.
The Cons
  1. N (as young as she is) has taken on a maternal protection of T at school and helps guide him when they are at daycare together or when they come home having done the same curriculum. Conversely, T adores N and protects her if ANYONE gets upset with her. Their connection as brother and sister at this age is fierce and they truly play and interact almost as if they are twins than 18 mths apart. It’s beautiful and I’m not sure how drastically it would affect both of them if we made this choice.
  2. As much as she is bright, I have heard some terrible stories of how much kids struggle in learning regular subjects in a different language, so much so that if they choose to leave the french program, they are years behind other kids and occasionally have trouble catching up
  3. The daycare and school we have the both of them at right now are amazing and we worked hard with them in the development of assistance for T, not to mention the wonderful friends that N has at the school where she would have none at the new school. This would mean two drop-offs, two pick-ups, twice the school activities

There you have it. My quick synopsis of where we are struggling and time is running out. I ran into another mom the other day and she indicated that they are close to a waiting list at the French Immersion and we had better get a move on. She also indicated that the school is darker, dingier and the staff don’t seem to be AS interested in working with parents on their kids success. Fabulous!

So I am appealing to you, the reader, to let me know your thoughts on whether we should move ahead or stay status quo?

How the IPad has saved my bacon..and kept me smiling at my kids

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

  • 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.
Restaurants
  • 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.
Grocery Shopping
  • 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!

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.

Business is Business

I used to work for a very well known brand and had a very awesome job…but sometimes when certain perspectives are thrown in… “very awesome” is not all that great. I had plenty of privileges and access to VIP events but it also took me away from my family, required me to work many 14-16 hr days, late into the evening and impacted my personal life.

What a difference a year makes..I believe that everything happens for a reason and that reason is now perfectly clear. You see, I was in the automotive industry in the middle of the recession and was part of the many lay-offs that happened during that time. At first I was hurt, deeply heartbroken that I (after working so hard for the business) was one of the ones let go.. But I had been making noises about travelling too much and had asked to be considered for a contract position in order to have a better quality of that whole work/life balance everyone looks for.

Right as I was let go was at the height of T’s problems at daycare…he was getting more and more aggressive, that kid who bit or hit or didn’t play nicely with other children. There were a number of parents who got very adamant about not having our “bad” kid anywhere near theirs…aggressive in fact and we were devastated. So I pulled him from that daycare. Instead, we hired our babysitter for the summer to fully engage our two children and give them opportunities to grow. The change in T was instantaneous…the biting stopped, the aggression died down, everything became far more manageable….and I started my own business.

Which is kind of funny because I have also heard that raising a special needs child is like running a small business…so I guess I’m running 2 businesses..Not sure if I am running either well but hey..this is officially my learning curve. My husband will tell you that I do good work but that I am THE worst administrative business owner on the planet.While I’m not sure the planet, I am going to agree that I am pretty bad at it..

So why did this all happen this way? What if I hadn’t started my own thing? I can ONLY imagine how absolutely challenging it would be “corporately” to coordinate the necessity of the daytime appts or how taxing it would be to be travelling and try to work with my husband to manage all the scheduled requirements…having my business affords me the luxury of working when I want and when I need to but also being able to be there for our son. I am quickly becoming accustomed to the need for flexibility and learning that the “need to succeed’ can easily be tempered with the “need to provide” the best opportunities for T.

For awhile I was a terrible supplier…just couldn’t manage to get my stuff together professionally and adjust to this change in our lives. But somehow now…I’m back..and I’m changing. My viewpoint on life and business has become more about what do I need to do sustain vs what do I need to do to become a million dollar business. And shockingly for the first time in my life, that’s ok..I’m still kinda weirded out that that is ok but for now, I’m totally going with it…

Small Leaps of Success!

I did it…I finished the 5k run in under 30 minutes! This was complete with a moment of hyperventilating and the inability to swallow by the 4th k…BUT I actually did it…!

I am more and more realizing that its about taking small victories throughout life…not giving into preconceptions of how far or how difficult it would be…JUST DOING IT…

Its not just running..its my business.. its working through the red tape when it comes to helping T get the best possible care & resources. Its so easy to get overwhelmed with life, the demands of home, being a mom, being a business owner, being an advocate, taking care of your relationships. And the simplest answer is one step at a time…

I envy all those moms who seem to have the supermom gene, capable of managing everything and still being able to e-mail at the appropriate times/bake cookies/do volunteer work. But that’s just it, they SEEM to have it all together…

Being a Supermom doesn’t need to be about being able to accomplish everything on your list. It’s more about realizing when its time to stop, spend a moment with your kids, listen to them and just be present. I much prefer focusing on being THAT kind of supermom..

FINAL RESULTS: Overall Race 345/1141 (top 30%)
Age 35-39 (top 9%)
Overall Gender Top 17%
In my age, I came in 8/94

My time: 5 K in 29:42

So as much as I am still not a fan of running, I liked it enough to commit to the 10K…Lookout!