Saying “Yes” to Early Intervention

Richie was still in the NICU when we were asked whether we wanted to get him involved in Early Intervention. His disability was apparent at birth, as was the need for assistance with therapies and navigating a complex system of care. Because Early Intervention had been one of my husband’s past career lives, we said yes and enrolled Richie very early. This decision was very instrumental in teaching me to advocate for him and look for ways to meet his needs.

Early Intervention in our area involved having a specialist come to our home at regular intervals. Richie’s specialist, Deb Miller, visited every other week and challenged him with activities that took into account his skill level and our goals for him. She documented his progress, suggested toys and activities, and worked with us to get him equipment and other tools to help him develop. She understood his abilities and encouraged me to attend events and sessions that expanded my knowledge, empowering me to be a more effective teacher and facilitator for him.

Access to Resources

The lending library was one of my favorite aspects of Early Intervention. We borrowed the Signing Times series and used it to teach Richie sign language when he was just a few months old. By the time he was a year old, Richie knew more than 100 signs and could use them appropriately. Working with the Early Intervention staff, we established our vision for Richie’s future and made plans that included academic achievement, growth and development, and social interaction.

The visioning program in our early intervention program encouraged us to think about Richie’s needs for the upcoming year and allowed us to request funding to purchase therapeutic items and medical equipment that was not covered by insurance. We planned well and purchased items that Richie is still able to use today, like a supportive chair, a bolster for therapy, and books and interactive toys. These were foundational to the academic success and knowledge we have been able to facilitate.

Today, at age five, Richie reads at a second- to third-grade level, can spell and write, and still uses some sign language. Thinking ahead about what we wanted Richie to achieve is an invaluable skill we learned through early intervention visioning. Now, we apply this type of planning to Richie’s medical care, school needs, and social-emotional needs as well.

Social Interactions for Parent and Child

Perhaps most importantly for us, Early Intervention included playgroups. Since Richie is medically complex, we only participated in playgroups during the spring and summer seasons, in order to minimize his risk of catching a cold or the flu. Therapists and early intervention specialists created activities for the children with consideration of their unique abilities and challenges. These weekly groups allowed Richie to interact with peers and gave me a chance to talk to their parents in a relaxed and fun setting.

One of the moms I met in playgroup connected me with the Family Advisory Council of our local children’s hospital, and that council helped me to develop a sense of purpose and belonging in the special needs community. Raising a child with special needs can be lonely; most of my friends don’t identify with the daily struggles or the small victories that are hallmarks of this life. The connections I forged just by participating with Richie in an Early Intervention playgroup allowed me to create a new, empowered template for how to approach parenting a child with special needs.

Looking back, checking the “yes” box for Early Intervention was one of the most important decisions we could have made as parents.

Charisse Montgomery, author of Home Care CEO: A Parent’s Guide to Managing In-Home Pediatric Nursing, is a professional writer, editor, wife and disabilities advocate, in addition to her most important role as mama to Richie. Having lost her sister to fiber-type disproportion myopathy in 2012, she advocates on behalf of her son and in memory of her sister. She has a bachelor’s degree in English from Towson University and master’s degrees in English and Educational Psychology from The University of Toledo, with research focused on empowering parents with medically disabled children. 

She recently completed a graduate certificate in Patient Advocacy, and she serves on the Patient and Family Advisory Council for Rainbow Babies & Children’s Hospital. She can be reached at @madvocator on Twitter, Facebook, and Pinterest or through her personal blog site, madvocator.com.