This week’s guest blog post is written by RDI® mom, Deborah Dykstra
Our family has mixed feelings about the whole April as advocacy month idea.
We are not fans of Autism Speaks, and so we do not want to support that particular organization.
However, we do want to stand with other families to say that our children bring much good to their families and communities, and that they deserve to have the support they need to grow, as well as opportunities to find a purpose and contribute their gifts.
I much prefer “Autism Acceptance” to “Autism Awareness.”
Three years ago, three other moms and I met to see if we could do anything about the lack of alternatives in our community to ABA services.
We were participating then in a DIR/Floortime based program and wanted at least to make sure parents had accessible information about their options.
We wanted them to know that choosing against a behavioral route would not be the same as settling for second-best.
So we did write some letters and we set up a website.
We were startled to see that our web traffic comes from all over the world.
There are people everywhere looking for information.
Since then we have expanded our message to also promote our local RDI® program (which our family is now a part of) and any other services and resources that have goals and principles in common with a developmental perspective.
We have had the privilege of entering into conversation with our provincial government about how services could be improved, and we continue to be a resource for parents looking for information.
A few voices can make a big difference
To elaborate on how, I would say that the power of even one voice is underrated.
One person sharing an idea can encourage that idea to spread, can be an encouragement…can get the attention of someone who is willing to listen or share. We started out with a Facebook group with four members, wondering if it was worth trying.
Then a few of us started writing letters to politicians, and were given an opportunity to go and meet with government people with responsibility for our programs. We’ve worked our way up the chain.
Related: Autism Advocacy: Beyond Awareness
The story isn’t over yet, but we are now a part of the conversation about services and supports in our province.
The other important piece happened last year, when we started to connect with like-minded organizations in our community. We were already talking with clinicians and service providers using developmental therapies, but then started connecting with other autism organizations; groups advocating for universal design in education and Community Living all have similar concerns.
It’s important to know what is already happening and join together. Collaboration is powerful.
My hope is, that whatever happens politically, we will still have made a difference to families who felt isolated and unsure of the best support for their family.
We wanted to let people know that others have gone the developmental route and found success and growth for their children. We wanted to help people make more informed choices at a time when they are vulnerable and uncertain.
Putting that information out there was not difficult, it just required a little research and a few hours of writing.
www.facebook.com/groups/floortimerdi
Together with her husband, Deborah is a parent of two children with autism aged 9 and 6. Her family has benefited greatly from working with Lianne Belton, RDI® therapist, since 2013. Deborah recently completed her post baccalaureate diploma in inclusive education and is intrigued by the parallels between RDI® and good inclusive teaching. In addition to supporting ADAPT, she serves on the boards of the Manitoba Alliance for Universal Design for Learning (MAUDeL) and Community Living Manitoba.
So great to see you in the RDI Newsletter Deb. You’re work in Manitoba has helped to promote parent choice in therapy for children with differences, bridge the gap between the vast specialized non-behavioural approaches and has brought many areas together to unite as one voice for those who often do not have a voice. Although it may seem a long road, when parents and service providers join in numbers at a grass roots level, the voice of change happens. Keep up the great work.