A mother always knows.
When my son began “acting out” at 18 months, I was confused and concerned. But as a first-time mom, I didn’t listen to my instincts and kept looking for other reasons for his behavior. By the time he was 24-months-old, I learned his behavior had a reason behind it – Tanner is autistic. In that instant, my husband, Joe, and I felt unequipped to adequately address his needs. But what we did know is how much we love our son, and that we would do everything to help him in the best way possible.
Our story isn’t unique. Parents are given an Autism Spectrum Disorder (ASD) diagnosis every day. And every day, parents raising a child with autism, wake up to face another day filled with unpredictability, uncertainty and moments of joy.
Raising a Special Needs Child can be Draining for the Caregiver and the Family
Throughout my graduate studies, I researched and wrote extensively on the construct of resilience—one’s spirit, hardiness or resistance in the face of stressful situations. When I learned I was the mom of an autistic little boy, I read voraciously and connected with other moms to learn from those who had walked the same path before me. But I didn’t expect that I would enter a world where often the primary caregiver (typically the mother), could be pushed almost to the collapsing point because of caring for their autistic child – and still attempting to maintain some semblance of normalcy in the home.
The toll this takes often manifests itself in exhaustion, poor health, feelings of helplessness, and isolation. Because of the behaviors often associated with autism, parents feel limited in who they can call on for help. Many find themselves thinking, “if I, as the parent, struggle to understand and handle behaviors in my child, how can anyone else help me?” Finding a babysitter is not just as simple as asking the neighborhood teenager you have known forever to come and babysit. The result is the parent not having anywhere they could go that could relieve the day-to-day stress and the sometimes-impossible circumstances they were trying to manage.
With so many resources now available to families living with ASD, I was surprised to discover that the needs of the caregivers were addressed only as an ancillary piece to programs. A family’s resilience is critical, particularly when raising a special needs child. With some estimates indicating 80 percent of marriages involving an autistic child end in divorce, and the medical research clearly indicating excessive stress as a precursor to disease in some, I felt compelled to act. The result is LoveU2Pieces, a non-profit organization dedicated to raising awareness and providing education and support among families living with ASD, as well as their extended family, friends and the greater community.
Education, Support and Care
We focus on the entire family because the whole family is affected. Families living with autism experience typical activities in a very different way. Going to restaurants, grocery stores, or even a place of worship can end with an abrupt exit because of a behavioral issue, leaving siblings confused, upset, embarrassed, or even resentful.
We focus on the community, because there are simple things community members can do to help support these families – including having a better understanding of behaviors that are associated with autism. With compassion and understanding, perhaps families with the screaming child would not be viewed as obnoxious or indifferent, but rather a family who is having a difficult moment.
I’m here to tell you that in a family living with autism, there are many things you can do to give support and so many only taken moments out of your day. Please visit our website to learn more. Do you have any ideas for us? We’d love to hear!