By Robyn DiPietro-Wells
OneOp Family Development is featuring this blog written by Robyn DiPietro-Wells. Robyn is one of OneOp Family Development’s Anchored. podcast guest speakers and the Social Media and Webinar Coordination Specialist for OneOp FD Early Intervention. Robyn will be speaking more about her personal experience of parenting children with special needs in the Anchored. Episode 4| Early Intervention Matters: A Parent’s Perspective. Be sure to check out her podcast being featured this Summer on Anchored.
When I became pregnant with my first child I was full of hopes and dreams. I dreamt of all she would do, become, and accomplish. I envisioned her entire future and wondered which parent she might take after. Would she love cheerleading and dance like me? Or would she take after her dad and play sports all her life? Maybe she’d play an instrument or be an artist. I dreamt dreams of all kinds. The future looked bright and I was excited. And isn’t that how a lot of moms feel during pregnancy?
Lily was born full term and was presented to me as a picture of health. However, when she was about five months old I noticed she was a bit behind on several of her motor milestones. She wasn’t rolling over yet. She favored her left hand and never really used her right hand. She wasn’t sitting up…not even when I helped support her. I used some of my background as an elementary school teacher to informally assess her. I knew developmentally what she should be doing…and in some areas she was behind.
I initially went to our medical providers for help. I sought out a referral to a pediatric occupational (OT) and physical therapists (PT). At our very first assessment of Lily the PT and OT told me that Lily presented with symptoms typically found in infants who have had a stroke. It was as if all the air went out of the room. Never in all my life did I expect that! This was not a part of my dreams!
An MRI and a visit to a pediatric neurologist resulted in an official diagnosis of cerebral palsy due to a stroke in utero. At that time, the best piece of advice I received was from our pediatric neurologists. They stressed the importance of starting therapy early due to the neuroplasticity of the infant brain. They never said what she wouldn’t be able to do. They simply pointed me in the direction of therapies and information! They gave me back my hope and dreams for Lily’s future by stressing the importance of early treatment and intervention.
In the first three years of Lily’s life we utilized both private therapists through our medical insurance, but also Part C Early Interventionists with the state of Virginia. Once Lily aged out of the Part C portion, at 3 years of age, we had her evaluated for Part B Special Education with our local school district. While she did not qualify for Part B, she continued to receive therapies through our medical insurance. She also participated in numerous special projects and programs at the Monroe Carrell Jr. Children’s Hospital at Vanderbilt in their STEP Clinic.
Today Lily is almost 10 years old. This spring she ran her first 5K and she loves to climb the rock wall at our local YMCA! She is a top-notch student at school and participates in nearly all of the same activities as her typically developing peers. I attribute all that Lily has accomplished to two things: One, her intense hard work and perseverance and, two, early intervention, both formal Part C Early Intervention, but also starting therapies of all kinds at an early age.
It wasn’t easy. My husband was active duty Army until November 2012 and worked 125-140 hours a week. We have three children younger than Lily, one who also has special needs. I know the challenges of being both a military spouse and the mother of children with special needs. I know how hard it is to persevere with Tricare (military medical insurance) and to advocate for your child’s needs. I want OneOp readers to know that there are answers for parents, there are ways to help the children with which you work, there are ways to support the parents, and that ANYTHING is possible. Great things can happen. Great things happen when children with developmental delays receive help, therapy, and treatment early through both Part C Early Intervention and private medical insurance.
The entire OneOp Family Development Early Intervention team is here to enable service providers to help military families with children with special needs reach their highest potential. We are dedicated to, not only your success as a provider, but also the success of the families with which you work. Please feel free to reach out to us (MFLNFDEarlyIntervention@gmail.com) and utilize the resources found within the OneOp Family Development webpage.
This post was written by Robyn DiPietro-Wells, & Michaelene M. Ostrosky, PhD, members of the MFLN FD Early Intervention team, which aims to support the development of professionals working with military families. Find out more about the Military Families Learning Network FD concentration on our website, on Facebook, on Twitter, and on YouTube.