I’ve been whining lately about being too busy. I do that every now and then, but before long my feet hit the ground and I recognize others who are really busy. Like moms of children with special needs. Their kids may be diagnosed with profound mental retardation, terminal illness, or serious psychiatric problems. Or they may have mild learning disabilities, food allergies, or occasional panic attacks. The list goes on; it is long, varied, and staggering. Tending to each of them requires appropriate care, acceptance within the family, the school, and the community, and understanding. That list goes on as well.
Often forgotten, though, are their mothers. They too have special needs.
My education about special-needs children and their moms was furthered one morning as I sat down with my bonded-together-forever friend Cherie Castellano in her office at the University of Medicine and Dentistry of New Jersey’s (UMDNJ) University Behavioral Healthcare (UBHC). Cherie is skilled in peer support, helplines, and crisis intervention for people in high risk environments, and is program director for the Cop2Cop program,* the Vet2Vet program,* and UBHC’s latest, the Mom2Mom program,* a peer helpline for mothers with special needs children. Although we had met before (please click on www.Suzannbgoldstein.com/blog and read the “Vets in Need…” post), this second meeting turned into an in-depth talk-a-thon that lasted over three hours. Lunchtime arrived and our talk continued. We examined our lives, our families, and our goals.
We have much in common, Cherie and I. Cherie has two boys, an older son who is healthy in all ways and a younger one who is a special-needs child. I had two children both lost to cancer, my younger daughter Valerie when she was nine, her older sister Stacy when she was thirty-seven. We are volunteers for various charities; we love to write; and we are special needs moms.
As we talked, Cherie described her new grant-funded pilot project at UBHC, the Mom2Mom peer helpline which centers on moms with developmentally disabled children. My charitable antennas began to wiggle furiously. As co-founder of The Valerie Fund,* an organization which supports comprehensive health care centers for children with cancer and blood disorders, it seemed to me that the kids at The Valerie Fund Centers also came under the category of special needs; and their moms were sorely stressed. Listening to Cherie, I was certain that The Valerie Fund Centers’ moms needed access to the helpline. I pushed for them to be part of this project. But I didn’t have to push hard. Cherie’s head was nodding in agreement as I spoke.
In short order, we set up dates for Cherie to visit two Valerie Fund Centers. Since we needed evidence that The Valerie Fund moms would, in fact, utilize the helpline, focus groups were discussed and moms were asked to participate. As a result, one focus group has already taken place and another will take place in early March.
At that point, with my interest soaring, I attended, as an observer, the first Mom2Mom training session. About twenty-five other women were there. All had special-needs children: Autism, Cerebral Palsy, Down’s Syndrome, Developmental Delays, Epilepsy, and more. Those women were smart, engaging, and excited about the helpline.
The training session ran for three hours. Following are some of the issues discussed in Cherie’s Mom2Mom PowerPoint presentation.
- 24 hour, 7 day a week helpline featuring peer support, telephone assessments, a network of referral services, and support groups.
- Daily worries about how life will unfold for child, for family
- Divorce rate estimated at 80%-90%
- Absence of mental health support
- Research shows impact on siblings, marriages
- Among Top Symptoms for Moms are Depression/Mood Disorder, Anxiety, Medical/Somatic complaints, Aggression/Violence, Physical Abuse
What I learned that day confirmed what I had imagined, that our moms at The Valerie Fund needed access to the Mom2Mom helpline. Speaking to a peer mom who had similar child health issues would prove, at the least, that they were not alone. It would contribute, I had no doubt, to a mentally and physically healthier mom.
But as adamant as I was to include The Valerie Fund moms in the program, I wondered – would I have called a peer helpline when my girls were sick? I thought back to one particular night during Valerie’s six-year struggle with bone cancer.
Her temperature had risen sky high. Val, thin and pale, lay quietly on our king-size bed as Ed and I took turns running a cool washcloth over her hot little body. At last her fever came down and she slept. After a while, Ed kissed me goodnight – he had work the next day – and walked into Val’s room, collapsing fully dressed on her bed. I sat down cautiously on the edge of our bed right next to Valerie, keeping guard over her and, at the same time, trying to calm my frantic heart. It was late.
I glanced at my watch – two o’clock! Everyone else in the house was asleep. I stood up from the bed, checked on Valerie, kissed her gently on the forehead – still cool, I noted – went into Stacy’s bedroom, kissed her, and tiptoed in to kiss Ed: couldn’t leave him out. All were sleeping soundly.
I padded barefoot down the night-darkened hall toward the kitchen, stood staring at the sink for a moment, walked back to the bedrooms, and circled back again to the kitchen. Back and forth. Back and forth. What to do? I could not sleep and my brain was banging against the bones of my skull. I heard hideous screaming noises that would, if it were possible, burst out of my head and wake all my loved ones.
I was frightened, exhausted, and guilty, always guilty, so preoccupied with Valerie’s health that I could not spend enough time with Stacy. Though silent and upbeat about my fears during the day, the nights were a different story – oh those nights – my head noises were overpowering.
You bet I would have made a call and fast! I would have been dialing that helpline number at the first scream.
The next training session for future peer moms is in April and I’m anxious to learn more. Mom2Mom is a small pilot program and in need of more funding, but I am convinced it will grow and the funding will increase.
The moms need it.
Please click on www.thevaleriefund.org for more information.
Please call: 1-866-COP-2COP; 1-866-VETS-NJ4; 1-877-914-MOM2Mom.
Program Director: Cherie Castellano MA, CSW, LPC
Suzann B. Goldstein, MA, is a medical sociologist, and a freelance writer, poet, and author. Sue and her husband Ed co-founded The Valerie Fund, an organization that supports medical centers for children with cancer and blood disorders in New Jersey and in New York City. In addition, the breast cancer center at Rutgers Cancer Institute of New Jersey (RCINJ), in collaboration with Sue and Ed, was renamed the Stacy Goldstein Breast Cancer Center at RCINJ. For more information, please click on www.cinj.org/treatment/breast_oncology.html.