This Mother And Son's Blood Is On All Our Hands
On this Mother’s Day, I am recognizing and celebrating a very brave woman. She’s not related to me nor is she famous. She won’t go down in history nor will she ever be considered anything but ordinary, societally. To me, however, she is extraordinary.
The Reason?
This woman loves and every day that she does, she grows one step closer to leaving her beautiful and precious son behind without her...without anyone really to care for him once she, herself, dies. She’s seventy years-old at present. Her reality is daunting.
And yet, she gets up and goes on - everyday. Loving him, protecting him the best she can, facing the circumstances born to her forty-one years earlier that left her husbandless and her Autistic son, Todd, fatherless.
Through the brokenness, the unexpected beatings, the thievery, and the disappointment, both mother and son have endured. Mary Alice Byrnes marches on and she carries with her others like this mother and son through a single Facebook page that speaks to the plight of Autism across this nation as well as, more intimately, her incredible courage and enormous heart.
Below is a post from that page which encompasses the meaning of Mother’s Day and motherhood in a way most will pray they never truly need to understand. However, at the rate Autism Spectrum Disorder is growing across this nation, many unsuspecting, hope-filled parents undoubtedly will.
Mother's Day Thoughts
The sadness was and continues at times to be overwhelming. It permeates through every fiber of your being and ever so slowly changes the dynamics of not only the immediate family, but also your extended family and friends, who either don’t understand the challenges you face on a daily basis or who sadly are embarrassed by being with one so different.
It robs you of experiencing the rites of passage most other families look forward to and it steals from you all your hopes and dreams and quickly expels most, if not all, of your expectations for the future.
This, is our normal, this is what happens to a parent or guardian who has a child with developmental disabilities.
Readers should know that as parents we did not volunteer for this assignment but rather, for the most part, found this role assigned to us, sometimes as early as birth, but often times the role slowly emerges and becomes clearer when the child does not meet their developmental milestones.
We look for help anywhere we can find it as for most of us this is truly unknown territory and reaching out to others becomes a daily task to find the best services we can for our developmentally delayed child. Early interventions are so much more common now then they were thirty years ago and thankfully when the child becomes school age they’re protected by the IDEA, the Individuals with Disabilities Act which was passed in 1975 and ensures that children with disabilities are entitled to a free and appropriate education and supports.
We, as parents become accustomed to teachers, therapists, and support personnel that gently try to bring us through this journey with love, support and acceptance. They provide us with shelter from the harsh realities of how the world will change once the child hits 21 and their educational supports fall to the wayside.
We, as parents and guardians are ill prepared for this new world, where our handicapped child must depend on the services that each individual state is legislated to provide. Many of us look to our state, who for the most part, has received a large percentage of their state’s annual budget to provide safe places to live and jobs for our loved ones and to be the experts in guiding us in the right direction only to become frightened, frustrated and feeling abandoned of all hope.
In our state of NJ we look to the Department of Developmental Disabilities to help us find the right agency for our loved one to call home but instead ,for many of us, what we have found are agencies that have repeated failed inspections, forged medication sheets, poorly trained staff and the list goes on and on.
Reports of abuse of the clients that live in these homes and look to them for protection are filed with the appropriate state agencies but the majority of the time there is no follow-up and parents/guardians are left in the dark as to what has happened.
Our question to all is, how much longer is this going to continue? We have cried out for help, not only with the state agencies that provide services but also to the legislative branches of the government and media publications to look into the state of affairs of the disabled community and the neglect that is occurring on a daily basis.
As a community, all we ask is that our loved ones are safe and protected but the pervasive feeling is that no one cares, as no one helps. This population of individuals might be the last frontier of discrimination that still exists in society and it does appear to many that we, and our children are alone.
Count your blessings, folks, and think about how you can help.