Wednesday 29 April 2015

A parent's voice...

Autism Awareness month is almost over, but that doesn't mean that autism awareness should stop.  We still have so much work to do to improve the community acceptance of individuals with ASD.  So the hard work continues.  We work very hard in our organization to support families and I have been thinking about it a lot over the past 2 weeks.  Why do we work so hard to support families?

Our practice has evolved over the past 10 years, but what remains the same is our commitment to family centered practice.  Why have I always felt so passionate about the family's involvement?  I think it goes back to the very first family I ever worked with.  When I was in my second year of my undergrad degree at the University of Ottawa (an indefinite amount of time ago...), I was asked to work in a home program with a 4 year old with autism.  In the early 90's, very few people knew what autism was!  It was then that I met a mother who impacted my perspective permanently.  She was an amazing mother.  She put together a 'home program' before home programs even existed!  She worked closely with me and we tried many different things!  We worked so hard with this little guy and we were a team.  She taught me that a parent's voice must be respected and that the parent is a collaborative partner.  She never let anything get in the way of us moving forward.  When Frost and Bondy's article first came out about PECS, she got them on a conference call with the two of us to ask "what this PECS thing was all about"!  She was a woman full of strength and resilience and I will be forever grateful for all she taught me. 

Since then I have met so many families!  They have the same strength, resilience and persistence in helping their child.  Parents are their child's first and most important teacher.  They will support their child throughout childhood and well beyond (*my mother is still a huge support for me!).  THEY are their child's voice when the child doesn't have a voice.  They are their child's best support to help them learn how to speak for themselves!  They live the daily struggles and they want the best for their child.

A parent's voice needs to be heard.

"Once you are in a relationship with a child, you are also in a relationship with the child’s family" -B.Prizant: Creating a Culture of Family-Centered Practice for the Autism Community

While it has long been widely acknowledged in the field that "parent involvement" is essential (NRC 2001), the meaning of 'parent involvement' is not consistent.  For me, it means they are not only an essential partner, they are the only permanent support for their child.  We as service providers are simply there to join them on their journey for a time and do the very best we can to support them to be successful in the future.

Thursday 2 April 2015

World Autism Awareness Day

#WAAD2015


Today is World Autism Awareness Day and it really got me thinking about how powerful community support can be. Many of our families experience daily challenges with getting their children affected by Autism out into the community. They face the stress of a meltdown, the fear of being judged when their child acts a certain way and the panic of an unexpected change of schedule. Awareness and education are the best ways to show these families that we as a community want to support and understand Autism. World Autism Awareness Day brings a lot of attention to Autism through social media, sharing stories, taking the time to celebrate the unique abilities that each child has and ask questions about how we can further support them to reach their goals.

Education is a huge factor to supporting families with children with Autism. Professionals and parents need to learn strategies to support kids in school, home and the community. By taking the time to gain understanding about Autism Spectrum Disorder we can impact the accessibility, acceptance and awareness our community provides to all individuals.

It is with great excitement that Children’s Autism Services of Edmonton would like to invite you to learn more about individuals with Autism Spectrum Disorder. We invite you to increase your awareness at our upcoming events:

Working with Families in Natural Environments with Robin McWilliams on April 10 at the Oasis Conference Centre. Robin will be sharing amazing information about Routines-Based Interviews, functional intervention planning and using collaborative consultation. To register please visit: http://www.childrensautism.ca/net/images/Robin_McWilliam_presentation_April_2015.pdf
or call (780)495-9235

Emily Rubin, co-founder of the SCERTS program will be coming to Edmonton from May 19-21 at the Oasis Conference Centre to educate professionals and parents in the community about how to determine meaningful, purposeful, and motivating goals and strategies based on a child’s developmental stage, functional needs, and family priorities. For more information and to register please visit http://www.childrensautism.ca/net/images/SCERTS_May_2015.pdf
or call (780)495-9235.


We are so excited that the Oasis Conference Centre has agreed to sponsor these events. The Oasis Centre was incredibly accommodating to us last year with amazing AV support and incredibly friendly and knowledgeable staff. We look forward to coming together with members of the community to learn and increase our awareness! 


Friday 13 March 2015

Triskaidekaphobia anyone....?

It is Friday the 13th.  The superstitious among us may feel this day is unlucky.  If you have Triskaidekaphobia you may just be staying in bed today! (...and no, that is not a fear of Triscuits but a fear of the number 13).  I for one have found Friday the 13th to be a lucky day! 

Some say that luck is what happens when preparation meets opportunity.  But I can't help but think about how lucky I am.  Lucky that we have have so many amazing children and families that we work with, lucky to have so many fabulously dedicated staff, lucky to be able to do what I love everyday!

Today in particular I have felt very lucky.  I just had a long conversation with Eustacia Cutler, Temple Grandin's mother.  She is such an inspiring and amazing woman.  Not only because she was a pioneer in the field of autism, but because she is such a thoughtful and engaging person!  We were talking about interactions and the impact that we have on one another.  The spider web of human connections is vast and while we impact individuals with ASD, they impact us as well.  There is something important that happens when individuals (and groups at a conference) connect with each other....

So I am lucky to be able to talk to Eustacia today, on Friday the 13th.  I am lucky to have an amazing family.  I am lucky to be able to travel with them in 2 weeks.  I am lucky to be involved in an organization like Children's Autism Services where we can have such an impact on the community.  And I am lucky I won a coffee on roll up the rim!!

Of course, things are not always so lucky... but today, on this day, I say:
phooey to Triskaidekaphobia!  

T

Saturday 28 February 2015

Happy Birthday Maier Centre

Three years ago today we celebrated the grand opening for the Maier Centre for Autism Services. That makes today our third birthday. Hard to believe isn't it?๐ŸŽˆ

So Happy Birthday to the Maier Centre. ๐ŸŽ‚  you're 3 years old... And how you've grown!

Yesterday I was trying to book a room for the afternoon and we had: two preschool groups running in the MELCOR Melton Preschool room, a Triple P in the Steve Duncan boardroom, a new staff training in Matthew's Library, a Family Learning day in the Mozak Daily Living Skills Room, Respite in the  Rotary Room, an OT student group in the interview room, an intake meeting with a new family in the counselling room,  and an old friend shopping in  Therapyware for some  sensory tools.

My.... how you've grown Maier Centre.
Happy Birthday!   ๐ŸŽ

Friday 27 February 2015

We have time... don't panic!



This is my first attempt at a blog post.  It is somewhat ironic that my first inspiration using this ultra high speed technology of blogging is to write about slowing down...  Never the less, I am inspired to write this in part because Carl Honorรฉ is in town this week presenting at the teachers conference on his book: "In Praise of Slow".  His books are a reminder to all of us to embrace our inner tortoise.

Last night I had another conversation with a family who is feeling the rush and the pressure to hurry up and get an early intervention for her child. This is the message that we sent to families with all of the studies that say early intervention is best, and all the professional saying to get kids into services right away. This research and the information about early intervention is well-meaning, however it can create a sense of panic and a sense of rush in families. We know from Carl's books that pressure and speed can be damaging. We also know from Carl's second book that slow parenting can have immense benefits. So why do we keep sending that message to families to "hurry up"!?  

The feeling for families that we are 'running out of time' can be overwhelming and anxiety provoking.  We need to acknowledge that children will learn at their own pace, that the support from families means more than the age of the child, and that all of us are LIFELONG LEARNERS.  There is no window that slams shut when children turn 6 years old.

So here we are with this dilemma. We need to start sharing the message to families that this is a marathon not a race, their engagement generally in intervention is a bigger predictor than the age of the child, and it is important to slow down… And yet if they continue to get that message early intervention is best hurry up, hurry up.… Where does that leave us? 

In the words of Temple Grandin, individuals with autism are "different… not less".  That old idea that it's about "fixing" something that is broken has done more damage than good. So let's embrace our inner tortoise in our approach to early intervention.  We have time.... don't panic.  Let's be slow in our approach, so we are not rushing and pushing and hurrying… there are merits in slowing down.