The Value of a Village

Developmental Disabilities Awareness Month is about changing the misconceptions that the general public has of those with intellectual and developmental disabilities. It’s about finding the best ways to support and enable those with ID/DD to be involved and thrive within their communities. It is about empowering them to live a life of which they can feel proud. Absolutely everyone deserves to feel like they have a place where they fit in and are valued! Parental love and involvement certainly can’t be underestimated, but what about the professional behind-the-scenes help that it takes to give a child with special needs the tools and support they need to live the life they desire?

For us, it began incredibly early. At 4 months old, my daughter’s pediatrician alerted us to the fact that McLaine was missing her milestones. In turn, this prompted me to start Googling like crazy. We were already dealing with some health issues, and throwing developmental delays on top of that seemed overwhelmingly scary at the time. Being a mom (a first time mom at that), of course I entered into a tailspin of some pretty catastrophic thinking about what this meant for her. After all, birth to 36 months is the most critical time in a child’s brain development. Through my obsessive Googling, I discovered a program called Early Intervention. It’s a federal program (part C of the Individuals with Disabilities Education Act) but has different names in different states (Tennessee’s is called TEIS). I made a phone call to set up an evaluation, and it was determined there that McLaine qualified for services. Little did I know that this was a small step to gaining a HUGE extended family.

At that time, I didn’t know any other parents with special needs children. Though overjoyed to be the mother of my beautiful baby girl, I was feeling lonely and fearful with all the can’ts, won’ts, and nevers being hurled our way. The little victories and mini milestones just weren’t understood to be the big deal that they were by most of the people in my life. With Early Intervention services, most children have their therapy in-home since the goal is to help them learn and function at their best within the family setting.  Enter our very first therapist.

Ms. L walked in with a big bag of learning toys and an even bigger smile. She had an incredibly positive spirit and a jovial way about her that brought sunshine to my soul in what could have been an intimidating experience. She was a developmental therapist who was there to teach me how to enhance my child’s development through play, but she became much more than that. She was an ally, a confidante, and a friend to me in a time when I was experiencing something very unfamiliar and daunting. She pointed out my daughter’s determined spirit (aka stubbornness!) and helped me realize that my McLaine was going to be just fine.

Over the years, my daughter has had many dedicated therapists who taught her tons of important things and celebrated each new milestone with us, no matter how small. She’s had wonderful educators who place value on her ability to learn. She’s had amazing home care nurses and medical support staff who not only care for her health, but also love her. All have played an important role in her development—some became friends, and a handful have been like members of the family. All together (not including myself and her doctors), McLaine has 16 people working with her daily or weekly. Sixteen people are currently directly invested in my daughter’s future happiness and success. They say it takes a village, and that’s the truth. Words can’t exactly do justice in saying thank you for something so life-changing, but I hope our village (current and former) knows that they mean the world to us!