One in 54 children is identified as having an autism spectrum disorder. That suggests most reading this will have some familiarity with ASD (Autism Spectrum Disorder) — as a relative, neighbor, friend, or through some other association. ASD occurs across all socioeconomic, racial, and ethnic groups, with boys four times more likely to be diagnosed with ASD.
To reach out to parents with questions and concerns about parenting a child on the autism spectrum, I have joined with three other mothers — Kim Johnson and Felecia Grant Cummings of Peekskill and Teresa Chang of Putnam County — to form a support group called Moms Navigating Autism. We host a video series in which we share our experiences with the aim of helping others like us. (See box for time and channels.)
Every child is unique and an individual, and that is no less true of children on the spectrum. In sharing their experiences, the moms hope to shed light on challenges they have faced, including discussions of practical solutions devised to meet those challenges, just like the solutions that can be found on a parenting guide e book.
In the first episode, which has been shown on Altice public access, we discussed what it’s like to first learn of the diagnosis, as well as the need for parents to educate themselves about autism so they can determine how best they can help—and advocate for—their child.
It is not uncommon for the parent of a newly diagnosed child to feel, especially initially, real anxiety about finding the therapies, treatments, and programs that will help the child thrive and flourish. The alphabet soup of acronyms can be daunting at first: OPWDD (Office for People with Developmental Disabilities), CSE (Committee on Special Education), CPSE (Committee on Preschool Special Education), IEP (Individualized Education Program), MSC (Medicaid Service Coordination), and so forth. Here’s a link to a great Action Behavior center nearby.
Our hope is that these programs, which will be posted to YouTube after they first air on public access cable, will provide a helpful forum (via the comments section under the video window) for parents watching the videos. We will respond to inquiries regarding any aspect of parenting a child with autism — with the caveat that we are not doctors and cannot provide medical advice, only a perspective as parents. We also provide information on resources available to parents via national societies, such as Autism Speaks.
For many children, sleep is an issue. For others, the challenge is self-injurious behaviors. Others may need guidance on negotiating peer relationships. There also is a plethora of sensory issues that often accompany a diagnosis of ASD.
Candid discussions will help parents, encouraging them to connect with others in similar situations, enabling them to take on the challenge of parenting their child day-to-day, and also arming the child with the tools they will need in the future to live their best life.
Parenting a child with special needs often can be an isolating experience. Those outside the immediate family may not understand the individual challenges and obstacles experienced by a child.
We encourage parents watching the program to reach out and use our YouTube channel to submit questions and comments, some of which may be addressed in future episodes.
Where to Watch + Connect
Moms Navigating Autism airs on Wednesdays at 4:30 p.m. on Altice public access channels. Peekskill/Ossining, Channel 15. Yorktown, Channel 74. New Rochelle, Channel 76.
Instagram > momsnavigatingautism
Facebook > Moms Navigating Autism
YouTube > youtu.be/s6r3952zriw
MaryAnn McCarra is a co-founder of Moms Navigating Autism and lives in Peekskill with her husband and sons.