I am a 37-year-old mom that is approaching her mid-life crisis, when in reality I feel I am living in a world that is in crisis. For the last 7 years, I have made it my mission to promote awareness – awareness of autism and sensitivity for families living with disabilities. However, I have reached a point in my journey where awareness is no longer enough. I often feel like we reside in a society that simply tolerates my daughter and her complex needs.
My full time job as an educator is my vacation. I equate my journey to school every morning to heading to the beach, a place where I can embrace the sun on my skin and sink my toes into the sand. At work I have full reign of my passion as a teacher. I am in an environment where I can be creative, take risks and participate in cutting edge professional development.
When the school bell rings at the end of the day, my “vacation” ends. Real life begins, and I switch gears into mom-mode, and like any other mom, I pick up my kids from their respective schools. Then, I make dinner, pack lunches, and go through the bedtime routines, typical tantrums and messes.
Once the sun has set, my life veers again in a different direction and my third shift begins. I now transform into an experienced administrator and manager of a child who has disabilities. I research the Internet to find resources to fund the endless costs of the intensive behaviour intervention therapy program that Bella requires. I juggle the endless therapy sessions, doctors and specialist appointments in our calendar to ensure that her physical health is looked after. I look to social media to connect with other families who live my life as my professional learning network. As I press ‘send’, I repress the urge to scream through my emails in order to advocate for a system that can provide Bella, and other children like Bella, with the education that they deserve.
By the time bedtime rolls around, my fears take over as I think of Bella’s future. What happens when she graduates from high school? What are our options?
I’m scared of what the future holds for our family. Although my life seems challenging these days, these obstacles pale in comparison to what our lives will be like when I can no longer continue to advocate for Bella. The reality is that families like ours are often cut adrift when our children with special needs reach adulthood. We are left to fend for ourselves in the face of dwindling social services, and even less than the meagre level of accommodations available to adults with disabilities. It is daunting knowing that it is all up to me to ensure she is taken care of. Some days are happy days, but most days are difficult and feel almost impossible.
A month of awareness, wearing a ribbon of hope and donating money to a charity is simply not enough to improve the lives of people with disabilities. As I write this blog post, I ask myself this question: What could be done to make the world a more comfortable, respectful, and nurturing place for the millions of people who live with disabilities? The answer to this crisis begins with each one of us.
Accept us. Bella’s list of disabilities are more than a doctor’s credentials. Severe Autism Spectrum Disorder, Pitt Hopkins Syndrome, Global Developmental Delay and Cortical Vision Impairment are just a few of Bella’s diagnoses. Acceptance starts by understanding that these labels do not make us defective or diseased. When Bella is spinning, banging and licking every toy you give to her, understand that this is how she plays. Accepting us does not mean ignoring or denying our disabilities; it means accepting us for who we are, as we are.
Respect us. We are people, fellow human beings. We deserve to be treated with the same respect afforded to our peers who are typical developing. Respect starts by understanding that we are full, with an individual personality, life experience, goals, and preferences. We deserve an education, access to communication and a place in society to belong as we become an adult. We deserve to live without fear of being abused, manipulated or hurt. We are not less than.
Support us. Because we are disabled in varying degrees and in multiple ways, we need support, services and accommodations to successfully navigate a world that is not made for us. Bella needs intense therapy to help her learn basic life skills. She needs her chewy tube to help her sit and regulate her inability to stay still. Bella requires her service dog to support her physical and emotional well being. Your societal norms are foreign to us. Supporting us starts by understanding that we are connected to a family that can best define what types of services we need, both in education and at home. Only with appropriate supports can we have equal access and opportunity.
Include us. We deserve equal access and opportunity throughout the community and throughout our lifespan. Inclusion is more than letting us be in a room with peers our age. Inclusion starts by understanding that we are part of the community and deserve to be in an environment that is created so that we can meaningfully contribute and participate. Being tolerant of my daughter’s presence is not inclusion. Give us the appropriate accommodations and modifications we require to fully participate. We need to and want to belong.
Listen to us. Bella’s augmentative communication device is her voice. You can say more than a simple hello. She is more than a cute little girl who has a big smile. She has favourite toys, activities and preferences. If she wants to protest or be heard, she knows the power of her ‘finished’ button. If you are unsure of how to interact with her, just ask. Many conversations about the issues that affect Bella’s life take place without her and our family being present. Listening starts by recognizing that these children have a family who have valid, legitimate and important things to say. We must be included in any conversation about our child, because decisions made by policymakers, school administrators, and grant reviewers impact our daily lives and our future outlook.
As I approach my mid-life, I realize that I want to carry myself with grace and find joy in every day, despite the challenges that our family has been given. I strive to surround myself with people who can build a community of love, empathy and acceptance. I have faith that when I am having a tough day, you will be around the corner doing your part to build a society where everyone has a voice and a place.
Every year my family fundraises for a charity that can have an impact on children like Bella. This year, I am asking you to share your ideas on going #BeyondAwareness. Through your social media of choice, how will you take the initiative to make your community an accepting, inclusive space for ALL families who live with disabilities?
If you are a family who will be affected by the upcoming new Ontario autism program coming in June 2017, how can you share your journey to advocate #BeyondAwareness for the education and services our children deserve?
If you are an educator, what does going #BeyondAwareness look like in your classroom or school community?
If you know a friend or family member who is navigating the world while living with a disability, how can you do your part to ensure that community organizations go #BeyondAwareness to support our vulnerable citizens?
Share an organization you know that goes #BeyondAwareness for people with disabilities and help families get in touch with them.
Please support our communities by moving #BeyondAwareness.
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