Lived Experience Exemplars
On your application to become a Certified Family Peer Specialist, you will be asked to explain your lived experience. Typically, this is conveyed in a few paragraphs that provide specific details about your experience as the primary caregiver of a child of any age with mental health and/or substance use challenges. Explaining what challenges your child and family faced, the systems you navigated, the resources and supports that facilitated resilience, and other important aspects of your story helps us understand your lived experience qualifications.
Loni, my oldest daughter came to be with me when she was fourteen years old. She had an extensive history of trauma, coming into the Department of Children and Families at the age of three from abandonment. My daughter bounced through foster homes, hospitals, and residential placements before she came to me. My home was placement thirty-two.
Loni carried diagnoses of PTSD, Bi-polar, ADHD, ODD, and RAD. Having this child in my
family quickly became a challenge to find the right treatment and supports. My job as a parent quickly focused on educating, advocating, and finding care for our family with our daughter and her mental health struggles. In theory, this should have been easier than it was. A lesson I learned was that I needed to find the right people and to fight for her. I had to educate myself on the Departments of Education, Mental Health, Developmental Services, and Children and Families. Furthermore, I had to challenge these “systems” to get services in order to help my daughter, because everyone would “pass the buck.” Not one local entity wanted to pay specifically for needed mental health services to help in her treatment until I was relentless in the fight. My greatest accomplishment was convincing her team to transfer her to a public high school. When that happened, she not only flourished, she graduated a year early!
My eldest son, Kevin dealt with dyslexia and ADHD his entire life, and then suffered with substance use disorder beginning around age 15 with sporadic uses of different substances, alcohol and marijuana being the main substances. This disease progressed to prescription pill addiction, which led to heroin addiction. As an adult child of an alcoholic, I tried to educate myself as much as possible once Kevin's addiction really took hold/control of his life. We found an inpatient rehab for him, which was not easy. I had to learn to navigate insurance, rehab, and recovery on my own, with no one to help or support me or my family. After inpatient treatment and jail, my son spent over a year and a half substance free. Unfortunately, in January of 2012 he relapsed; we tried to find him treatment but needed to do so without him violating his probation, which would have landed him in prison versus jail, due to relapsing from a disease that still required treatment. While waiting for a treatment bed, Kevin, who had not used any substances for days and went with an acquaintance to find heroin, our assumption, to stop any withdrawal symptoms. The heroin that he was given, was in fact 100% pure fentanyl. This was almost 7 years ago when fentanyl was just beginning to poison the US drug supply. Kevin did not have any opioid tolerance at all at that point and did not survive this overdose. He is my eldest of 3 children, he died 2 days after his 21st birthday on October 17th, 2012. From that moment, I have made it my passion to help other families that have been in my shoes, raising a child with SUD or dealing with a family member with SUD, and also helping families deal with the loss of their child.
I am a mom to 3 daughters ages 21, 19, and 11, and they all have severe emotional and behavioral challenges. We have dealt with crisis, admissions in psychiatric hospital units and crisis stabilization units. They have lived away from home in residential treatment facilities. They have all had IEPs throughout their years in school and I have attended each one and several of those I have personally requested. We have worked with many therapists, providers, and specialists over the years.
My parenting was strengthened by the behavioral health needs of my children, because I had to learn how to navigate the systems and advocate for the best services for my girls. I had to learn to not give up, that you can’t give up. On many levels this is exhausting and frustrating. It is very difficult to hear different diagnoses from different providers for one child. Then to try to seek out what can best help your child (meds, therapy, support, etc.) and when you find something that you think may help, and that there may be a light at the end of the tunnel, you have hope. You may hit another wall or several walls. Then the services you need have a referral process, more waiting. Hoping there will be an agency that has availability and be a fit for your family.
One’s parenting skills become strengthened each day not knowing what your day with your child will be like. Will she make it the whole day at school without them calling for me to come pick her up? Is the school following accommodations in her IEP? Will the police need to be called if she becomes unsafe? These are just a few things that are real concerns on a daily basis that thankfully most parents of ‘typical’ kiddos are not able to relate to.
Becoming my children’s advocate strengthened me as a parent and as a person. I was their voice. And they needed to be heard in order to get the help they needed.
I have learned that sometimes the ‘professionals’ do not have all the answers. I have learned to speak up for what I think will best help my children. I have learned that many of the providers are willing to listen and empathize but still may not have all the answers. I have learned that it helps to find and meet other parents and/or caregivers that are also raising their ‘non-typical’ children, because I learned I am not alone, and it does help to talk to others that can relate and share lived experience. I learned that you need to be teachable and correctable as a parent because one method of parenting may not work for your child and make things worse, and this can change, so you must learn to be flexible with your parenting style.