World Autism Awareness Day- Acceptance begins with understanding

 

Sydney LIUB  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…

Buddha LIUB    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

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