WE ARE NEVER ALONE

By Anonymous

*Author chose to withhold her name to protect the privacy of all involved.

For months I have been trying to make sense of the crisis that struck our family last fall. My husband and I have two children. Our oldest is right on the edge of officially becoming a teenager. He is an intelligent, sensitive young man who happens to have a mental health disorder. He has struggled with sensory integration issues since he was a toddler. Around 2ndgrade, those sensory issues manifested into a significant anxiety disorder and depression. For the sake of his privacy, I will refer to my son as Adam.

Adam is now on the cusp of puberty. He walks the line between acting out Star Wars with his light saber and texting the girl he has a crush on. Some days, he falls asleep snuggled up with his beloved stuffed puppy that he has had since he was an infant. Other days I notice that his jeans are too short, dark hairs have formed on his upper lip, and his shoulders seem broader than they were the week before. He is changing so quickly yet is still the same old Adam that I love to the moon and back.

The fall is a difficult time for my son. It takes him a couple of months to adjust back into the school routine and his mental health suffers because of it. Every school year brings a new set of challenges but our family powers through, adapts and provides Adam the extra support he needs to regulate.

Last October, he was still struggling with the back to school transition. He would frequently come home in tears. As the month progressed, his emotional outbursts quickly evolved to irritability and then anger. It was scary to watch but we were proactive, reaching out to his mental health professionals, guidance counselor, and school personnel. Despite our efforts, Adam’s mental health continued to decline.

Then I received a phone call that shook me to my core. Adam had physically and verbally assaulted one of his teachers. The consequence was a five day suspension from school.

I was in the car when my phone rang. I was not expecting the call that morning. I was not expecting the absolute terror that would resonate inside every cell of my body. I was not expecting the hesitation to accept that my son had done something so contradictory to everything I had known about him up to that point. I was not expecting the feeling of devastation. I was not expecting to feel paralyzed with guilt. What did I miss? What were the signs? What did I do wrong?

I immediately reached out to a dear friend. We have been tight since we were teens ourselves. She listened closely and without hesitation. She knew exactly what I needed: not empathy but a problem-solving partner because I was in full blown warrior mama combat mode. I needed someone who listened to the details and then filled in the gaps. I needed someone to tell me “You are doing a great job” while still encouraging me to try harder. She knew that I did not have the option to give up. So I powered through, just like I always do. Adam’s mental health was the most unstable it had ever been and we were desperate to help him.  This beloved friend, who knows me just as well as my husband does, was there for me. She was my Ms. Fix It, my cheerleader and my advisor.

Over the next several months, my husband and I juggled full time work, emergency 504 amendment meetings, psychiatric evaluations, counseling appointments, and lots of late night tears and fears. At one point, Adam began to have thoughts of hurting our family dog, shoving his little sister down the stairs, and jumping out of his bedroom window. It was terrifying. My husband and I felt so isolated. We canceled dinner dates with friends, turned down invitations to parties, missed time from work, and watched our boy like a hawk for three solid months, until the crisis was over and he began to stabilize. My friend was always a text away and coincidently lives right down the street from me. We had endless walk and talk sessions throughout this tumultuous time.

My husband and I did not tell many people because despite recent nationwide efforts to bring awareness to mental illness, there is still a stigma. Mental illness is one of those hidden, invisible disabilities that many people still do not understand. It is something that makes others uncomfortable when brought up in conversation. In recent years, mass shootings have become the norm and all too often, mental illness is considered the cause. The negative headlines surrounding mental illness can make a parent feel ashamed to open up to friends and family.

I am so thankful that my dear friend was able to be there for me when we were experiencing such a heartbreaking challenge. She let me dictate the type of support I needed and when I needed it and I will be forever grateful for that. I never would have imagined that I would need to return the favor so quickly.

For the past few weeks, that same friend, who helped me process one of the most difficult moments in my life, needed me to step up. Her teenage daughter began to experience significant mental health issues, which were sudden and unexpected.  We went on many walk and talk sessions. I would listen to the details and fill in the gaps, just as she did with me. I told her “You are doing a great job” while still encouraging her to power through.

My friend called this afternoon. Her daughter had been having a difficult week and I was expecting an update. Her voice kept breaking up because of spotty cell service. I could barely make out her saying, “not doing well” “today” “suicidal ideation” “psychiatric admission” “inside ER” “will text you.” After ending the call, I stared at my phone until the text came. My friend’s daughter was being admitted to a psychiatric hospital. I felt completely helpless and had no idea what to say to make my friend feel better.  After several minutes of deliberation, I replied:

I don’t know what to say. Tell me what you need me to do.

And that is exactly what she did. She texted instructions and I dropped everything to follow through. I will continue to be here when she needs me and she knows that. I will let her dictate the type of support she needs and when she needs it because that is what she did for me. (Her daughter was released since this was first written but we continue to lean on each other.)

That is why I wanted to share this story.  Because Parent to Parent support is so critical for us on this rollercoaster called life.  Parent to Parent is a model program designed to provide support and information for parents of children with disabilities and/or health impairments. Parents are matched with other parents who also have a child with special needs.

The Family to Family Network of Virginia, an initiative of the Center for Family Involvement at Virginia Commonwealth University’s Partnership for People with Disabilities, has grown from one statewide Family to Family Health Information and Education Center begun in 2005 to a nine-site (and growing) Family to Family Network where family members of culturally and linguistically diverse children and young adults with disabilities have people in their own communities to call upon in their efforts to identify and obtain needed information, services and community supports.

The Partnership, a university center for excellence in developmental disabilities, receives federal and state funding to implement the F2F Network using a replicable peer support model based on Parent to Parent USA evidenced-based practices in matching families one-to-one using trained, volunteer parents, grandparents, siblings, and self-advocates. The Family to Family Network is P2P USA’s recognized Virginia alliance member.

Our local networks in Virginia provide:

1:1 emotional, informational and disability and community services and systems navigational support

  • Family-friendly information and resource referrals on topics such as special education and early intervention services, health care and related financing (such as private insurance, TriCare and Medicaid), disability services, and other community resources
  • Expertise in military services for military families
  • Expertise in autism through partnerships with local autism groups
  • Expertise in deaf culture through collaboration with Hands & Voices
  • Expertise in mental and behavioral health through collaboration with NAMI
  • Leadership development to support families in advocating for and participating in the design of more family-friendly, effective service systems
  • Connections to cultural brokers from culturally & linguistically diverse communities

In addition to what is offered locally, the P2P/F2F national platform offers matching for families with rare disorders and unique needs. In other words, if we don’t have someone within our network in the Commonwealth, we can reach out across the country to find someone you can relate to.

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