ABA, Autism, Autism spectrum, Canada Federal Government, Disability Tax Credit, Floortime, Light It Up Blue, Manitoba, Manitoba Board of Education, Manitoba Health Services, Manitoba Provincial Government Services, MLCC, RDSP, Registered Disability Savings Plan, Safeway, Sobeys, Winnipeg, World Autism Awareness Day, World Autism Awareness Day 2013
Three parents of children on the ASD spectrum made a choice to organize the first ever “World Autism Awareness Day” walk, here in Winnipeg, MB. They know me through two Facebook pages, one to which I operate. They came to me and asked me to be the guest speaker to convey a positive message there is help.
Here it is:
WOW. Those who know me have heard me say, sometimes our English language does not provide us a word that can truly describe a moment. This is one of those moments. The only way I can truly express my thoughts at this turnout are stolen from Tigger – ABSOLUTELY POSITIVELY RIDICULOUS. In a good way of course.
Today is the 6th annual International United Nations World Autism Awareness Day. More importantly, this is the first year that Canada has officially recognized this April 2nd occasion, since it was passed as the World Autism Awareness Day bill, last October. To celebrate it, three local parents made a decision to organize tonight’s event; Lou Lovrin, Mike Wilwand and Arlene Reid. It is them who have worked tirelessly amongst all their other responsibilities as parents, to bake, colour, decorate, coordinate and Light It Up Blue.
Many of us have been around the lap with one of our children when we first heard the diagnosis of “autism” or what is now considered the “autism spectrum disorder“, ASD. Some of these parents/caregivers have been around that lap with more than one of their children and some of us have been running it for more than 20 years.
We want parents to know there is support out there, especially for those who have recently received a diagnosis. Marni Wachs Zuke started a Facebook page for residents of Manitoba that had children on the spectrum about 6 years ago. That was eventually taken over by Crystal Caruso Costello and myself. Lou and Mike saw a need and created PACE – a place where like-minded people with children on the spectrum could meet for a coffee, take a break and meet on Tuesday evenings at the North Y for the kids to have some Plain old-fashioned fun.
Autism literally means selfism and the first signs tend to show in an infant with delayed communication and social skills. As they grow older, particular situations cause stress and anxiety which leads to physical pain. While a parent receives an ASD diagnosis, there are many underlying issues. To name a few, they are also dealing with: AD/HD, sensory processing disorder, tics, anxiety disorder, global developmental delay, obsessive compulsive disorder, oppositional defiant disorder, depression, Tourette’s, epilepsy, seizures and the list goes on. Our children’s brains are wired differently and in many cases built a little differently, too.
Hearing the diagnosis, for most of us, is one of the most difficult situations we have encountered. We want parents, caregivers, brothers, sisters, grandparents, aunts and uncles to know…..there is help. Navigating the health system, the educational system and social services, while you are trying to hold your head above water is taxing. We want you to reach out for yourself or for someone you love. There are people who care and get it. More than you know. There are over 30 groups and organizations that service individuals with Autism here in Manitoba. And we also have ABA – Applied Behaviour Analysis Therapy, Manitoba Families for Floortime therapy, the Rehab Centre for Children, and Variety – The Children’s Charity of Manitoba.
We appreciate all levels of government for listening to the needs of people with Autism. The Federal government for recognizing TODAY — April 2nd. For offering Registered Disability Savings Plans and making changes each year AND the Disability Tax Credit. The provincial government through their THRIVE campaign, designating additional dollars for support to families, to pre-school and school-age ABA programs and funding in the school system for children specifically with Autism. They are creating awareness, training professionals in the service sector and delivering community partnerships. At the municipal level, City Hall Lit It Up Blue last year. Companies are hiring individuals on the spectrum, such as Sobeys, Safeway and MLCC to name a few. Canadians and Manitobans are listening.
We came here as a collective tonight to continue to be the voices for our children and with our children. More work needs to be done. Approximately 10% of those qualified have actually opened a RDSP. The process needs to be simpler and the product needs to be easier to understand, along with withdrawals with fewer restrictions. The province has to ensure follow-up with THRIVE through the DISABILITIES office and it’s effectiveness, as well as ensuring that the right hand knows what the left hand is doing. Residential care has up to a 7 year waiting list and yet due to recent National Building code adoption, province community group homes are sitting empty, while the crest of Autism reaches an age of independence. We need a medical system that not just labels Autism but that will investigate and treat the underlying issues of ASD, such as Gastrointestinal diseases like chronic constipation and inflammatory bowel syndrome, seizure disorders, sleep dysfunctions, sensory processing disorder and PICA, the habit of eating non-eatables. We cannot wait in an emergency ward for 9 hours while they are vomiting from significant pain. The Board of Education MUST treat everyone equally; therefore, Service Dogs are Service Dogs, whether trained for the blind, seizure disorders or for safety reasons, no matter why School Division you live in. The City must continue ensuring accessibility in buildings and play equipment, along with awareness, such as Light It Up Blue. For every penny, can I even say that anymore, okay nickel that is spent NOW, the less of a financial task in the future. We want our children to grow up as independent as possible.
We the parents and caregivers must stay as a collective, and though Autism brings out the unique needs of each of our children, we must band together and not divide ourselves between Auties vs. Aspies, ABA vs. Floortime, early treatment and treatment.
We must continue to understand HOW this has happened, in order to be preventative for the future, but must also continue how to help our children through therapies, the educational system and the medical system. Autism does not fall to the wayside once they turn 18. They continue to have needs in the medical system and those areas need to be addressed in a much timelier fashion. Our community needs to understand it is almost impossible to have two full-time working parents, due to the needs of these children. Doctor’s appointments, therapies and repetitive paperwork for everything under the son. Single parents are struggling to stay employed, if they can be. They need OUR help!
How can you help? Offer to cook a dinner, watch a movie with the kids so the parent can have a relaxing bath for 30 minutes, go to an appointment with them and offer helping hands, take them out for a coffee, do a load of laundry, clean a room, volunteer at Special Olympics, advocate for change, listen to their meltdown and offer a hug, stop staring and offer encouraging words, open a door.
Our children are not bad children and we are not bad parents. We have become behavioural therapists, occupational therapists, Speech therapists, teachers, nurses, doctors, advocates and much more. This was not by choice but by necessity. And it is my belief that the purpose of my journey, to which I walked mostly alone, to share what I have learned along the way.
Today is not only about awareness but as my T-shirt expresses – acceptance.
Our forefathers and mothers broke down barriers. Institutions are shutting down, integration is a norm, and the government listened that ABA can work. We need to remember them always because they fought bigger battles than we can imagine.
Look around you. Do you see Autism or do you see individuals of tomorrow asking us to join their world. A world that has less lights, less noise, less hustle and bustle. That bring us back to the joy of a single cloud floating through a clear Manitoba blue sky, an ant with food for a hundred of his family, the comfort of a teddy bear, a laugh that roots itself in the belly or the joy of throwing snow in the air to squeals of giggles.
Lydia Brown, an autistic student from Georgetown University has an important message.
Accept Us….Autism is a part of who we are.
Respect Us…we are fellow human beings.
Support Us…. We are disabled in varying degrees and in multiple ways. We need support, services, and accommodations to successfully navigate a world not made for us.
Include Us…We deserve equal access and opportunity throughout the community and throughout our lifespans.
Listen to Us….too many conversations about us and issues that affect our lives take place without any of us present.
Tonight Arlene, Mike and Lou made a dream of mine come true. This is our moment to enrich our children’s lives and provide them the opportunity for their creative spirits to rise. It is my wish, that in a few years, we can change today from World Autism Awareness day to World Autism Acceptance day. Thank you.