As a mother of a son on the autism spectrum, I know the importance of raising awareness for Tennessee families impacted by disorders. Tennessee’s Gov. Bill Lee Proclaimed March 2020 as Developmental Disabilities Awareness Month, and we spent the entire month of April informing and educating during National Autism Awareness Month. In May, we hope to bring awareness and reduce the stigma of those living with mental health or behavior issues. Bringing attention to these conditions can help parents recognize and intervene early, leading to more positive outcomes later in life for many children.
Autism affects an estimated 1 in 54 children in the United States today, according to the CDC. My son Ethan was 23 months old when we learned that he was on the spectrum. I also have a disability and struggle with challenges from bilateral profound hearing loss. I wear cochlear implants to hear better; I can talk, read lips, and use sign language to communicate with the hearing and deaf worlds.
It has been emotionally tough for our family to navigate two disabilities, and it hasn’t been easy for my daughters- having a mom with hearing loss and a brother with autism. It was during my own struggle with Ethan’s diagnosis and care that I began to search for a support network. I found separate groups for disability, autism and mental health conditions that offered ideas and explained behaviors, but I envisioned one space where information could be shared to help support parents and families struggling with all types of physical or cognitive/emotional disabilities.
In January 2019, I created the ‘Middle TN Disability Resources & Support’ Facebook Group for parents, teachers, therapists, and other professionals to have a safe place to interact, and now we have over 1000 members. We use this group to support parents of disabled or mentally ill children, share reliable resources, ask questions, and connect with others facing similar situations.
There are many stress factors that come with being a parent or sibling of a child with Autism. I worry being in public places because something small could trigger a meltdown in Ethan. We have had to leave restaurants and birthday parties because it was too much for him. I’ve declined many invitations over the years because we didn’t know how Ethan would respond. This is a reality for many parents caring for a child with a developmental disorder and the worry and anxiety can be overwhelming.
That’s why I never want families with special needs to feel alone. When you join our group, it is easy to find other parents who can relate to exactly what you’re going through. When new parents whose child has just been diagnosed join our group, the veteran parents share their experiences and solutions in hopes of helping these parents navigate the new challenges they face.
Over the years and with the help of members in the group, I’ve learned to recognize what my son can and can’t handle, and when it’s time to move him to a safer environment. I don’t have to hear him; I can see it in his body language and facial expressions. These are experiences I can share with others.
My disability does not define me, just like my son’s disability does not define him. In 2009, I graduated from Vanderbilt University with a bachelor’s degree, and this month I will graduate again, with my Master’s degree in Special Education. I have spent the last year advocating to raise awareness and build the ‘Middle TN Disability Resources & Support” group on Facebook so that families like mine have access to the best resources for their loved ones with an autism spectrum disorder or developmental disabilities. If just one family feels more equipped to handle the challenges that come with a disability, then I am doing my part for the community.
If you or someone you know is struggling to care for a loved one with a disability or emotional/mental health challenges, I encourage you to join our Facebook group and get connected with hundreds of middle Tennessee parents and caring professionals.
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