Meet Eileen Forlenza

Today we’d like to introduce you to Eileen Forlenza.

Hi Eileen, so excited to have you with us today. What can you tell us about your story?
One time he warned me that pillows could be used for more than sleeping on. Another time he assured me I would not live long enough to run up the courthouse steps. I had a sort of “out of body experience” when he choked me in the backyard while our three kids played on the swing set. But the lowest time was when he kicked me like a dog in the gravel driveway. I survived domestic abuse and I promised myself I would never be voiceless again. Ever. My children – Emily, Holly and Cody, needed to hear me fight for them.

Through all of this, Holly is and always will be voiceless. Her autism and severe epilepsy render her non-verbal. She is unable to ask questions, shout for joy, proclaim injustice or tell us she is scared. I wept when a counselor from SafeHouse Denver told me it was “no accident” that God had given me a child who cannot speak, that Holly would be my greatest teacher about choosing to remain silent. With three kids under the age of four, under-educated and unprepared, there were so many questions for which I had no answers. Where would we live? How can I get a job? Will my children remember this darkness? At my core, I knew one thing, resilience was our only option. Although they were incredibly young, my kids knew we needed each other, and together we would find our way.

Day by day, I restored my self-image. I leaned into my friends, faith and family. My kids were watching, learning, and growing alongside me. I was laser-focused on healing and modeling resilience for them. Holly’s complex health needs presented hurdles for me to return to work, so we scraped by, living in poverty but flourishing in love. She experienced over 100 seizures a day, and never gained the ability to speak. I was so focused on our restoration; I wasn’t paying too much attention to what was going on around me. I did not notice that one of the guys on the church softball team, Scott, had a certain twinkle in his eyes. He played shortstop, I played third base, He insisted on helping me load the kids into the mini-van after the game. He was kind, athletic, prayerful, and funny. I noticed that the sound of my laughter had returned when I was with him. Until my friendship with Scott, I had forgotten what my laugh sounded like. Another piece of my voice was found, and I had not noticed it was muted.

Eventually, Scott and I married when the kids were 4,6 and 7 years old and rejoiced when our son Michael was born completing our beautiful love story. I can’t imagine my life before Michael, he is kind, athletic, prayerful and funny! Love had come full circle.

It has been 28 years since I walked out the door of fear and ushered in my life of possibilities. Holly has been the drumbeat of our family – she sets the rhythm of where and how we show up. As a family, we have set an intention to give voice to the voiceless, sharing our story of resilience and hope. With Scott as my emotional anchor, I created a side business whereby I share my story of resilience as a survivor of domestic abuse and the joys of parenting a child with special needs. Holly’s care needs remain 24/7 and her seizures and silence set her up for marginalization, yet her siblings were her guardians. Despite our herculean efforts, Holly was bullied and victimized. She was an ideal target – a silent extrovert.

Then in 2011, a miracle happened. Holly’s communication was “unlocked” following an intervention with a specialist. Using the strategy of Supported Communication, a methodology used by people with autism, Holly could find share her insight and wisdom. Following years of a laborious process involving intensive therapy and training sessions, Holly’s depth of literacy was fully revealed. With the help of trained facilitators, Holly is now able to communicate by typing, with support, using a simple keyboard. Holly’s ability to communicate has revealed her superpower of espousing love to all people. Holly is like a modern philosopher who teaches about the pure love and light that resides in all of us.

With the re-shaping of Holly’s abilities, I have enhanced my motivational speaking by including Holly as a co-presenter. We both have an incredible story to share about resilience, hope and triumph. It takes her a long time to craft her message for our audiences, and we deliver her message using technology and other accommodations. Her neurodiversity has not stopped her from believing in herself and the need for her message of love and resilience to be shared around the world. So together, Holly and I share our motivational messages to encourage others to never give up and know that kindness matters.

Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
1. Navigating the healthcare system
2. Holly not “fitting” any particular diagnosis as a child, therefore we had no “group” to belong to in terms of support.
3. Single parenting with three kids under four years old.
4. No child care center in our local community could care for Holly, so I was unable to work.
5. Learning to trust again after surviving domestic abuse.
6. Having enough time for all my kids when Holly needed so much extra care.
7. Holly’s 24/7 care needs. She is now 33 years old, and that is still the case. She is unable to dress herself, prepare meals, bathe independently, etc. She requires full supervision and care.
8. Finding the balance of self-care while caregiving.

Thanks – so what else should our readers know about your work and what you’re currently focused on?
Through my career in Public Health, I established myself as a Subject Matter Expert (SME) in health policy as it relates to children with special health care needs. I have successfully advocated for quality health policies that are anchored in the principles of patient/family-centered care. I spent 16 years at the Colorado Dept. of Public Health and Environment with many accomplishments as it relates to health policy, integrated care, community engagement and diversity, equity and inclusion. I currently serve as a Sr. Consultant for Diversity, Equity and Inclusion for a non-profit insurance plan serving people who have publicly funded insurance. (ie. Medicaid)

I am most proud of being invited to the White House by the Obama Administration in 2010 in recognition of my contributions to the implementation of the Americans with Disabilities Act (ADA) on behalf of children and families.

What sets me apart from others is that I braid my lived experience of being a recipient of public programs (Medicaid, subsidized childcare, etc) with my work in health policy and integrated care delivery. What also sets me apart from my colleagues is my experience as a motivational speaker as a “side gig” which allows me to share my personal story in appropriate work settings. I have honed my skills as a storyteller which allows me to do my “day job” with an anchor of purpose. As a motivational speaker, what sets me apart is that I share the stage with Holly who models the normalcy of neurodiversity. I also end each keynote speech with a vocal performance, singing a song that is written by Holly!

Before we let you go, we’ve got to ask if you have any advice for those who are just starting out?
As a parent of a child with disabilities, I would tell other parents who have just started their journey to embrace your child’s unique characteristics as a gift. Our lives are extraordinary – we have met some of the most awesome people in the disability community. The daily caregiving is indeed a huge burden, so you have to build in times for self-care and see yourself outside of that role.

As a professional, I would advise others to bring their full selves to their work. Your life story should not be checked at the door, but rather, should inform your work. Celebrate differences and illuminate likenesses. Surround yourself with others who see all your contributions, not just your accomplishments.

Finally, for others starting out as a motivational speaker, my advice is that your presentation is not a performance, but rather a sharing of lessons learned at a deep and experiential level.

Pricing:

• $3-10,000 for a conference keynote and supplemental workshop.

Contact Info:

• Website: www.HollySpeaksUp.com www.EileenForlenza.com
• Facebook: EileenForlenza, HollyForlenza, HollySpeaksUp
• Twitter: @EileenForlenza

Image Credits
Photography by Aubrey