One of the biggest misconceptions is that premature babies “overcome” their early birth and are “completely fine” and you “would never know they were born prematurely.”
But for my family and so many others, we’ve learned that, that’s rarely the case. More times than not, life after the NICU is a struggle, with setbacks, successes, a lot of hard work, and uncertain medical problems. Some of these problems may not show up for several years, even into adulthood; so finding and treating health problems as early as possible can help babies lead longer, healthier lives.
Thankfully, there are support services available to families like mine. Support and early intervention are key to finding your confidence as a preemie parent. Many families like mine have had great success with the different programs offered by Regional Centers throughout the United States. Here is my experience with early intervention from the Regional Center of Orange County (RCOC). – Jenny McCormick
Regional Center of Orange County interview with Jenny McCormick, preemie mom of a 26-week micro-preemie and Senior Editor of PreemieWorld, LLC and Operations Manager of the Alliance for Black NICU Families.
RCOC: Your son was a preemie and you received early intervention services from Regional Center of Orange County in California. How did those supports assist you and your son?
JENNY: Prior to bringing my micro-preemie home, I spent 129 days in the NICU watching my medically fragile child fight to survive outside of my body. As you can imagine, this puts a toll on preemie parents. Needless to say, as excited as I was to bring my son home, I was also terrified. My son was given such a poor prognosis and I wasn’t sure what this would all look like for us outside of a hospital setting.
Thankfully, the Regional Center of Orange County jumped in. Joshua received early intervention. We had skilled therapists coming to our house to assess and work with Joshua. These wonderful early developmental therapists not only worked with Joshua, but they worked with me as a parent as well. They provided educational materials on developmental timelines, they showed me what things to look for when it came to Joshua’s development and above all, they gave me encouragement and ultimately, the confidence to continue to advocate for Joshua so that I felt like I was doing everything possible to help my son thrive and that I wasn’t missing anything when it came to Joshua’s health and development. Regional Center followed Joshua’s development until pre-school where they assisted in transitioning Joshua to a special education program.
RCOC: Based on your experience with RCOC and early intervention services, what advice do you have for preemie parents?
- The best tip I received from a preemie and loss dad was, “Stay in the moment.” Try not to think too far ahead about the “what-ifs “and “maybes.” Take it one day at a time, one moment at a time, and one breath at a time.
- Don’t ever be afraid to use your voice to advocate for your child. You, the parent, knows him/her best. If something feels wrong, speak up.
- Early Intervention is key to moving forward. Early Intervention aids in providing you with the confidence needed to advocate for your child and the security that you are being proactive when it comes to your preemie’s medical needs. Also of interest, a study published in 2013 found that early interventions could help reduce anxiety and depression in mothers of preterm infants. The study also found that early intervention improved parents’ efficacy.
- Communicate often with your early intervention therapist. They are there to assist. Don’t be afraid to relay your concerns and ask questions often. They have your back!
- Emotional Health: Give yourself grace. Premature birth and the care of a preemie after the NICU is incredibly difficult. Whatever feelings you have are okay. Be angry, be sad…you are entitled to grieve, hope, and feel whatever feeling hits you. Your emotional health is an important factor in traveling the NICU journey and beyond. Allow yourself to feel, regroup, walk away for a bit, and try, try again.
RCOC: Did that experience lead you to your current job?
JENNY: Absolutely! I like to say that this job found me. Preterm birth and everything that comes with it forever changed who I am at my core. Along the way, there have been so many preemie professionals and preemie parents who have provided pearls of wisdom and support at a time when I was feeling vulnerable so it feels good to be able to give back to preemie parents just starting on their preemie journeys.
RCOC: What do you want professionals and parents to know about what you do?
JENNY: PreemieWorld was created by preemie mom, Deb Discenza to help bridge the gap between parent and professional in the NICU, at home and beyond. PreemieWorld provides books, videos, and other products and tools with the hope to make everyone’s life just a little bit easier as the “new normal” is created in the life of the preemie and his/her family. PreemieWorld supports families and preemie professionals worldwide with these tools and more:
- The Preemie Parents Survival Guide to the NICU – The only book preemie parents will need in the NICU and at discharge. Nicole Conn and Deb Discenza have teamed up to bring a supportive, informative and helpful guide unlike any others out there. It is the guide they would have wanted back during their preemies’ NICU stays. https://preemieworld.com/store/
- preemieFAMILY/preemiePRO Newsletters – PreemieWorld, LLC is a support group and educational forum. Our most important goal is to help guide families through the terrifying rollercoaster of their NICU journey, and beyond into recovery. Our free, colorful newsletters are a monthly publication for parents and families of preemies, as well as preemie professionals. https://preemieworld.com/newsletters/
- Inspire Preemie Network – A FREE virtual global support community for parents of preemies, 64,000 family strong. Led by Deb Discenza, Preemie/NICU Mom, Head of PreemieWorld. https://www.inspire.com/groups/preemie/
- Preemie Resources – Our PreemieWorld Directory has resources for parents/professionals around the globe. We also provide free extras (Preemie Freebies) for you to download, print out and/or e-mail to colleagues, families, etc. as shown. These freebies are also available in Spanish. (También disponible en Español).
RCOC: Fun Facts: Tell us a fun or quirky fact about you.
JENNY: I’m a total rocker. I love rock concerts and live music. I’m also a Star Wars nerd. My boys and I celebrate Star Wars day every year with fun Star Wars foods/drinks and of course an all-day Star Wars movie marathon! (May 4th).
RCOC: Is there anything else you’d like to share with us?
JENNY: Prematurity doesn’t end in the NICU. It’s a lifelong journey filled with many bumps and blessings. It also provides many life lessons. Never give up hope – hope gives us the courage to keep moving forward and the strength to advocate for our preemies.
Interview with Larry Landauer, Executive Director of Regional Center of
Orange County, CA
PREEMIEWORLD: What should professionals and parents know about Regional Center of Orange County?
LARRY: Regional Center of Orange County is the private, nonprofit organization contracted by
the State of California to coordinate life-long services and supports for more than 23,000 Orange County residents with developmental disabilities and their families.
Developmental disabilities include intellectual disabilities, autism, epilepsy and cerebral palsy. We’re also the agency that administers California’s Early Start program in Orange County; Early Start is California’s early intervention program for infants and toddlers that have or are at-risk of having a developmental delay. All regional center services, including Early Start, are provided free of charge to those who meet California’s eligibility criteria.
PREEMIEWORLD: What are early intervention and Early Start programs and how do they assist and support preemies and their parents?
LARRY: Infants and toddlers with a developmental delay or disability or who have certain risk factors (such as preemies) are eligible for early intervention services. Funded by the federal government, this early intervention program is called “Early Start” in California and RCOC administers that program in Orange County, California.
Early Start is an invaluable investment in the future, because the earlier a developmental delay or disability is identified, the greater impact we can have in ensuring that a child is able to achieve his or her maximum life potential. Many parents of preemies are referred to their local regional center while in the NICU, but a medical referral is not required. Any parent who believes their infant or toddler may not be developing according to typical milestones can reach out to their regional center for an assessment.
The assessment process includes evaluation of the child’s motor skills, communication development, learning skills, social interaction, and emotional development. Depending on the needs of the child and the parents’ choices, early intervention services may then include, for example: an infant development program, family training, nursing, psychological services, audiology, vision screening, speech and language services, and occupational and physical therapy.
Like all services provided through RCOC, early intervention services place the child and
family at the center of planning and decision-making, respecting individual values, lifestyle, language and culture.
PREEMIEWORLD: How successful are early intervention and Early Start programs?
LARRY: Early intervention and Early Start programs are immensely beneficial. In fact, on average, more than 85 percent of the children in our Early Start program no longer need RCOC services when they transition from Early Start to their public school. These transition success stories are rooted in a highly personalized process and close collaboration between RCOC, our network of expert service providers who deliver early intervention services, and school district staff throughout the County. Time and again, we see that getting help sooner rather than later improves children’s developmental and learning opportunities, so we urge any parents who are concerned about their child’s development to reach out and get an assessment for their child.
Even parents whose children may not be eligible for Early Start can get help through our Comfort Connection Family Resource Center. Comfort Connection helps parents by sharing local resources and other low-cost or no-cost community-based services such as social and recreational opportunities for children with special needs, parent support groups, educational workshops and events, and more.
PREEMIEWORLD: Is there anything else you’d like to share with us?
LARRY: Regional Center of Orange County is here to help ensure children get the help they need and to provide parents with much-needed support and expert guidance. Throughout the pandemic, we know many parents have been concerned about seeking services outside the home, but our service providers have protocols in place to ensure that children, family members and staff are safe so there’s no reason to delay getting help.