World Autism Awareness Day- Acceptance begins with understanding

Posted on April 2, 2014 by RunningWAutism

It still happens…5 years since diagnosis and we can still catch people off guard when we say the word “Autism”.

It’s funny watching someone’s reaction. We get anywhere from an “oh!” surprise/a empathetic “sorry”/ or a completely uncomfortable “I’m not sure what to say so I am going to look at my feet” look.

I get it. I remember the beginning when I had a hard time even saying the word. I didn’t understand it. I tried to. I researched the crap out of it, read blogs, cried at Youtube, felt despair, desperation, frustration and a total sense of loss of control in our life. I shared little with friends and cried a lot with my husband.

We were contemplating and (NOW) laughing about this the other day. How deep and high the roller coaster is of emotions you experience coming to terms with words like Special Needs, Autism and the number of ignorant commentaries that exist throughout your normal day. We realized we had traversed through our own version of the 5 stages of grief. The first 4- Isolation, Anger, Bargaining, Depression simply put…just sucked in terms of understanding Autism.

The last stage, the one I have ached for for these past 5 years, the one that helps me feel like I can finally breathe again, the one that has me realizing that our relationship has survived, the one that has taught us to relax, think of things in a different perspective, laugh more…

ACCEPTANCE.

That word…means so much in our world.

For us it means calmer tides in managing a life with Autism. It means thinking of where we are as a family not what T might go through in his lifetime.

It means not getting stressed out, horrifically embarrassed or having your eyes burning with tears when publicly someone reacts or says something well…just ignorant.

It means letting go of those inside thoughts hearing other parents talk about a challenging issue with their kids. All the while you are thinking “Ok, but you know your kid is getting invited to go to birthday parties, playing sports, will go on dates, move out of the house, and live comfortably on their own.. and we don’t have a clue if any of that is in our future.”

It means a school system that admits their faults and instead starts striving towards legitimately supporting children with Autism. This won’t be accomplished by putting them in a separate special needs room. This will be accomplished by accepting that the school dynamic has changed, that moving forward there is likely going to be 2-3 children with Autism in each classroom and incorporating education for children on how to view their Autistic peers as different, not less.

As the national average has just shown yet another jump in Autism diagnosis to 1 in 68 recently (30% increase from 2 years ago), ACCEPTANCE is something we need to start focusing on in society as a whole. Whether through a friend, a relative, a neighbour or a classmate the odds are too great for Autism not to be somewhere in your world. With acceptance, first comes the need to understand.

As we celebrate World Autism Awareness Day, take a moment to try to learn what Autism is about. The funny thing…most of us Autism parents are beyond thrilled to actually openly explain the parts we can.

TRY to look at it differently. TAKE TIME to understand.

Just ASK.

Its as easy as a Lightbulb but as profound to change as any — Its as easy as a Lightbulb but as profound a change as any

TODAY is about Lighting it Up Blue around the world for Autism awareness.

Support the momentum that globally we have seen take shape over the last couple of years by taking the time to understand and teach your children about ACCEPTANCE.

Autism Speaks has some great examples of Lighting it up Blue. Head to lightitupblue.org to register how you are taking action for Autism Awareness. Super proud of Home Depot and Philips who have teamed up to provide a #LIUB blue floodlight or simply stop by and grab a blue lightbulb and put it up in or outside your house today to show your support for Autism Awareness.

Together we can make change.

The Story of Jenna

Posted on August 28, 2013 by RunningWAutism

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

Autism and the 911 call

Posted on April 1, 2013 by laughloveandlife

When the phone rang, and my son shouted “Mommmmmyyyyy! It’s 911 on the phone!” I knew I was about to have an interesting night.

I walked to the bedroom where I discovered my son and daughter..my son holding the receiver, chatting with someone on the line. I took the phone gently from him and put it to my ear..Here’s a quick excerpt on what went down.

” Hello????”

“Hello ma’am, this is 911. Did you know that your son just called us and told us there is a fire in your house?” “Is there a fire in your house?”

“Oh my god!” I respond..horrified that T actually called 911 (and then to my grievous error I kind of chuckle as it dons on me) “I’m so sorry…My son is autistic and has been working on a community helper lesson topic at school..I am guessing he thought that by calling 911 he would be able to talk directly to a police officer”…911 lady proceeds to tear a strip off me..lecturing about the irresponsibility of letting my son have access to the phone and not teaching him how important it is to only call 911 when there is an emergency…

Fair enough…

After 10 min…OK..I got it lady.

It was unintentional and T was super pleased with himself that he had figured out how to talk to the police (he had gone to a fire department with his dad a couple of days before and had interviewed a firefighter, while standing outside the door to the hall JUST in case the alarm sounded- THAT’S a whole ‘nother blog post!)

My husband was out for the night so this “lesson” was all me. I hung up the phone and proceeded to ask the kids to sit down for a family meeting. I explained that 911 should only ever be called if there is a fire in the house or if mommy or daddy are lying on the floor not answering if you asked them a question. We talked about the importance of not taking away a police or firefighter who could be helping someone who was really in trouble. I had felt like some of my words had gotten through and we were good on the road to laughing about this later.

I was feeling good about our talk when I heard the knock and doorbell at the door. I knew instantly that there were police at our door. T opened the door and was THRILLED to see the police at our door.

Me- Not so much. The police came in and indicated that they were here to talk to T about calling 911. T (at first excited) now had eyes brimming with tears…completely distraught that the police officers were upset with him. They were gruff (and hey…I get it, they are trying to teach him a lesson) but they got stuck on him not looking at them in the eyes. Like getting gruffer, mad and frustrated… I get so frustrated that I explain that he’s autistic and eye contact is one of the most challenging actions for T to commit to. They stumble and then can’t quite recover. As often happens, the police reacted the same as many people do when they hear Autism….awkwardly. As a parent, I am sad to say I am getting more used to that reaction than I would like.

The irony? At the end of the conversation, T puts his hand out and says “We’re pals right?” and totally disarms the officers, his usual endearing quality winning them over in a millisecond.

As we are heading into Autism Awareness Month, I can’t help think of how often people don’t know how to react to the word Autism (myself included at times). Friends have asked how to explain to their kids, adults have asked what exactly what that means…

I look forward to the day we will have the answers to explain…

April 2 is Light It Up Blue to help raise awareness for World Autism Day. Do your best to spread the word and light it up blue tomorrow.

#Autism makes us perfect for the Amazing Race

Posted on February 27, 2013 by laughloveandlife

To all those Autism parents out there, we’ve done it.

We applied to become competitors for the Amazing Race Canada.

Many people have asked us why on earth we would be interested in going on a show that often displays couples at their worst, creates tension in an otherwise happy relationship and puts one through a series of rigorous challenges that pushes you well beyond your comfort zone.

Why? Good question.

Because we believe that living life to its fullest requires going for adventure; pushing yourself to your limits often and being proud of whatever it is you accomplish.

Because if ANYTHING has shown us to keep things in perspective…its Autism; to live in the moment and to stay positive in the face of adversity…It’s Autism. Daily we have found the humour in every situation…in its purest form….through an unfiltered mouth and an innocent mind. If we let things get us down, we wouldn’t be near in fighting form to accomplish this goal…but we have committed to each other to always be talking, always be behind one another, always helping each other get through those crap days.

IF we get selected for the Amazing Race Canada, we would be thrilled. Not just for us. But for the potential of “representing” our parents who are going through the same thing we are and demonstrating JUST how kick ass all us Autism parents are!

Check it out here…(and feel free to share!)

[youtube http://www.youtube.com/watch?v=rylnu_Vc_HA]

Want to know what daily life is like with Autism?

Posted on February 7, 2013 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.

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..

Autism has changed HOW we are..

Posted on January 11, 2013 by laughloveandlife

I like looking at a glass half full. I believe everything happens for a reason. I always try to stay positive within a situation.

Wish is partly why I haven’t written in a while. I didn’t want to be a disability parent who just mopes around all over the internet.

6 words.

“There’s Something Wrong with That Kid”.

Those words took down a 250 lb linebacker of a dad and a (we really don’t need to talk about my weight) pretty strong character of a mom.

It was at a hockey practice with our team and the other team we played earlier in the day. They didn’t know T had Autism. My husband was on the ice to work with T and other kids from our team to help them. T was tired and started meandering aimlessly through the practice, having a hard time staying on task and completing the necessary drills. They didn’t realize my husband was T’s dad and after watching a particularly challenging exercise, one coach made that comment to the other.

Chris, my dear husband, protector of our family, hit a complete crossroads at that point. He was proud of himself later for not slugging the guy right there on the ice and totally disappointed that he didn’t get a chance to punch him in the face. Amazing isn’t it how one phrase can stir up such intense emotion?

Original source: Arham1234 on Fanpop.com

You see, it’s starting to show that T is different. Up until this point, we kind of flew under the radar. His outbursts of movie content, overly sensitivity when someone yelled (he actually told a hockey mom once that she needed to stop yelling at her son and that made him “VERY angry” – clenched fists and all), kissing and hugging (inappropriately) friends, parent of friends, teachers, daycare providers and his speech pathologist kind of came off as endearing and young. So much so that we were often asked if we were “sure” that T had a diagnosis of ASD.

In some ways, he is doing a 1,000 X better in terms of social. The new WiiU he got for Christmas has allowed him to engage with his friends in something that he loves to do and is proficient at so that he can provide advice to his friends and find a way for them to play together and on the same team. But he is also starting to demonstrate those tell-tale signs of Autism- he doesn’t connect with how loud he is, can’t quite gain control of physical responses and often “over does it” when excited or stimulated, he gets very upset if you get angry with anything (most recently it was a friend’s dog who he adores that was getting into trouble for eating off the table), and his friends are noticing his repetition, nonsensical statements and lack of interest in common games typical of a 6-year-old.

On the bright side, he doesn’t lie, has a laugh that is so pure and honest, you want to bottle it up and save it, and his empathy is such that he spent an entire period of hockey making sure that everyone was ok who had fallen down.

This is yet another phase we are learning about on this journey and what we have recently discovered is that it doesn’t define WHO we are but often does define HOW we are.

And part of HOW we are going to be is to always try to stay positive, and overlook the times when people are ignorant in what they say but at the same time are telling the truth. There IS something different about him.

Something awesome.

LOVE is what gets you through Autism

Posted on November 9, 2012 by laughloveandlife

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…

Heart-shaped love — 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”

i-love-you-repeat — 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….

“Hockey Ready” for Autism?

Posted on October 29, 2012 by laughloveandlife

T over here while the play is the other way

We managed to avoid it last year. The whole notion of T joining up for hockey.

As a number of our friends registered, we were just in the throes of a fairly new ASD diagnosis…trying to figure out what exactly that meant, how to help T, how to make sure we survived as a couple, and so much more. We were definitely not ready to face another “team sport” challenge (soccer had been an epic fail the year before).

I had designed T’s entire room in a sports motif, full of references to hockey, baseball, football…and he couldn’t care less.

But then a good friend of ours gave T a poster of players from the Toronto Maple Leafs which we put in his room and out of nowhere he started to show interest in hockey. As we often have experienced with Autism, he also tends to obsess and suddenly became obsessed about the 4 players on the poster, reiterating every night their positions, their names and talking about the people behind them in the stands and even what they were doing.

So this year, when T asked if he could play hockey, we tossed and turned, discussed, debated and eventually decided to take the leap and sign him up.

We had no doubt that he would enjoy playing hockey (over the past year we had done a hockey fundamentals program which taught the kids how to skate, how to hold the stick, how to turn- he loved it) but we weren’t sure of our ability to not get frustrated as we watched from the bench.

We were warned by other parents that many kids get out on the ice and spend more time gazing at the ads or the scoreboards. They were right.

The first game brought an overwhelming series of emotions. T was so incredibly excited to be out playing hockey. Dad was so very proud that something he thought we would never see (T playing hockey) was actually happening. I was a bundle of nerves. So proud of him for getting out there and doing something he wanted to and absolutely crazy over the fact that every time the puck came by, he would be oblivious to it. He just skated and skated and skated (he’s not great at stopping yet) but his delight coming off the ice that he played hockey was worth every hair pulling moment throughout the game.

I know we are just getting into the season and this is a long road ahead….I know I will be biting my lip through every game…wishing and hoping that he finally gets into the game that he loves talking about so much.

Sometimes all a girl needs is HEART SHAPED Pancakes!

Posted on September 14, 2012 by laughloveandlife

Ask any parent who has two kids, one autistic and one not and they will most likely respond that one of their biggest worries outside of managing ASD is making sure that the other child feels equal in the love, attention and energy you can provide to your children.

I often worry about my little girl. She is the 5-year-old, very gregarious, dynamic drama queen and often a bit bossy younger sibling to T. I don’t think she is intentionally bossy. More likely that behaviour pattern comes out of her mirroring what we say or how we interact in working with T all the time. In order to create interest/action that really resonates with him and help him establish what the “rules” are within the house, socializing and day-to-day functioning, we are often repeating that same conversation.. That repetition has created a little girl monster… hands on her hips, blurting out statements like “T, Look in my eyes..good looking!” and “Good job T, I’m really proud of your smart decisions”.

She is wise beyond her years. An old soul.

I think all the time about what is going through her head?…How much she understands now that T is slightly different? When will she start asking those tough questions? When do we explain Autism to her?

Is she getting enough attention on her own or is she dramatic as her way of seeking attention we have been neglecting to provide her?

My belief is to make sure both our kids feel that infinite love we have for them and never that it’s some sort of competition on who carries mom or dad’s heart with them.

Which is why it was a welcome opportunity this past weekend to enjoy our very own girls weekend as dad and T went up to the cottage.

It was a lovely time spent shopping, cuddling on the couch, watching a movie, heading to a birthday party and stopping by a local street festival in the rain. An event that had my little girl shakin her bon bons and soaking up all the awesome music we were witnessing throughout the day. Couldn’t be more proud.

By Sunday, I was madly smitten with that little girl and wondered what I could do to make it a really lovely morning. So I hunted down a little heart shape mold and made her heart-shaped pancakes. She was thrilled and as we sat there eating our pancakes in the quiet of our house, I thought about how nice it was to just have a few minutes with just her and I…ssshhhh quiet…amazing..:) We might someday have up and down roller coaster relationships but for now, I will love that Bestie roll we are playing together.

and then she said “Mama, I love you…you make my heart so full…just like these pancakes”

I love you N…now pass the syrup.

Get down? or Get back on track?: Depression nearly got me

Posted on September 12, 2012 by laughloveandlife

Yesterday felt like the lowest of the low kind of days. I felt like it simply took EVERYTHING inside of me just to get out of bed..to keep going…to keep working towards getting T help in school…

All parts of me felt on the verge of hiding under the covers and simply going back to sleep, avoiding the challenges we have been facing for a simpler, quieter, easier kind of day.

Was I depressed? Absolutely. Is this depression…I don’t think so. But easily see how if I were to give in to that desire to stop ,it could easily be there in a heartbeat.

As a family, we’re exhausted…we’ve been working with the school board in trying to find a solution to support our son in school. It’s been incredibly draining and the amount of meetings/emails/conversations we have had about it has us living in survival mode to just get through each day. We are continuing to advocate for T and won’t stop… but its taking every piece of energy we have.

Add that to the fact that I have been injured over the summer, have hardly exercised and ballooned in weight because of it. I just hit a wall. I started seriously questioning whether I needed to consider going to see someone professionally by mid afternoon??

But then we had an Autism Meetup last night. A group we started to support Parents in the city of Toronto who want to look at different ways to manage through Autism, look to each other for support, get advice on different solutions and talk through the victories and challenges we have.

It helped. But this morning helped even more.

I decided I can’t let this get to me. I know we have to keep fighting and I need to keep energy high to take care of our life. I need to be there to support our kids as they begin the school year, my husband, who is writing the most well-articulated letters to anyone and everyone willing (or not willing) to listen and my business, that I need to keep going in order to maintain the flexible schedule we need to access therapies/resources for T throughout the day.

I decided to try to go for a run…and then someone woke up early and agreed to come for a run with me. T…agreeing to come along if he could run in his pajamas.

Sometimes we need a little reminder what we’re fighting for

We raced…full force…fast…as hard as we could…and I remembered why I started running in the first place.

Running helped me work through the diagnosis of ASD, helped me gear up for the fight and I realized that I REALLY need that element in my life to stay sane.

I might not be as fast as I was awhile back, but I’m back.