Tag: New Autism Diagnosis

Want to know what daily life is like with Autism?

Posted on by laughloveandlife

Like a tigress stalking her prey, she stealthily creeps into our room and maneuvers oh-so quietly to lie in between us, sneaking under the covers without us hardly noticing…until that moment that “thwack!” She hits one of us in the head with her elbow, knee, or best yet a good ol’ kidney kick with the leg.

N is 5 years old and you could say that this is a fairly normal habit, however I believe that the result of her coming into our room for a “cuddle” is often precipitated by her older brother getting up early, heading downstairs to watch Super Mario How-To Videos. That’s right, not “PLAY” Super Mario but he very much enjoys the 80’s style instructional videos in which he acts out what’s happening on screen…usually with a “hi-yah!” Usually loud enough that we’re not going back to sleep.

I started thinking recently of what is different in our world since we have adjusted to having a child with Autism.

For those parents doing as we did and researching how life changes with Autism, here’s a few excerpts from our daily life…

Repetition

We hear “Do you know Super Mario Galaxy 2??? You can get it at the game store. Can you put that on my home list?” an estimated 20-30 times/day.

T’s need for instant gratitude (patience is too abstract at times) has resulted in a new “list” developing. Your Christmas list, your birthday list (both he understands means waiting for a special date) and now his home list. His home list are those things he wants now. As in let’s go get it RIGHT now, “like now ok?” ..he might be flexible enough for after school but that’s about as far as his home list wait time reaches.

new-super-mario-bros-wii

How we communicate

We don’t yell. Not that we really did anyways but T’s response to a raised voice is one that can set him off for the day and create an entire meltdown within seconds. So we laugh. And we try often to look at the humour of a situation cause it is so much about perspective with Autism. Crap can get you down daily (School boards, other kids and the way they treat your kid, how your child can lose it over the most perplexing situation) that we find ourselves reminding each other to keep perspective. We have two children we are completely smitten with, we love each other…nuff said.

Fashion Fairytales

We have a lot of pairs of crisp new jeans. I try…so often cause he looks so flippin’ cute in them but he says they feel like sandpaper. Wow! Nothing that adds to a mom’s guilt than thinking she is putting her kid in sandpaper pants. I had the pleasure of meeting a lovely friend named Vicky Bisson who is with a company called Peekaboo Beans. We spoke about sensory sensitivities in Autistic children and she mentioned many of their clothes are designed to really support sensory sensitivity and their pants/jeans are lined. This could be our answer to getting out of sweatpants! We talked about trying some of their line out to see. If you want to check out Vicky’s page, Click here. Stay tuned as I am sure I will be shouting to the rooftops if this option works.

We get up early

T’s brain is active and often sparks up between the hours of 5-6am. This has led to all sorts of tactics…1) We’ve tried to lie beside him to get him back to sleep 2) I have taken him for a run with me when I am heading out that early 3) We have taught him to get his own cereal 🙂 I like Option 3 a LOT!

The Louis Vuitton bags I have under my eyes are impeccable and I have just come to terms that it will be like this for a long time…

Exhausted
Original source http://sales.shineonraw.com

We get creative

Motivation is often different for T. We recently discovered that daring him to prove us wrong when it comes to doing his homework makes him laugh and very proud of his accomplishment. Trying to explain to him that skating away from the play during hockey wasn’t good finally connected when we talked about the fact that he wasn’t just quitting himself but quitting on his team. A key focus for us is simply that its REALLY important to stay, line up and shake hands with the opposing team at the end of each game. To get the social part of hockey as much as the sport.

This is not what we expected but then what parent is having an experience with parenting exactly as they imagined?

Life is full of surprises, I realize that more and more each day and these are just a few we have encountered so far in our day-to-day with Autism..

How Women In Biz helped me open up about Autism

Posted on by laughloveandlife

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

We LIT IT UP……Blue for Autism Awareness

Posted on by laughloveandlife

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.