Testimonials

You need to learn to live in both worlds. By the time Matthew was 18 months old, I was a master at living in the “typical” world. I had two older children, and was very clicked in to my community, my church, local mom’s group and all the little classes for babies. I was totally ok. More than ok.

Matthew was a wonderful, thriving, gorgeous boy who just happened to have Down syndrome. The PR machine that I had created was in full swing. I showered and dressed every day, hair and makeup perfect; outfits (my son’s and mine) perfectly ironed. In fact, I later described my iron as “my very best friend”. It was all about presenting my son to the world in the most positive way, and it really helped. It helped me, and helped those around me get comfortable with him. But as you can imagine, it wore thin.

Besides my husband, and the wonderful strangers in several chat rooms, there was no one around me who “got it”. I almost always cried alone. And those first two years there really was a lot to cry about. My son had a heart defect that needed surgery, and a thyroid condition, and had been hospitalized twice – once with bronchiolitis and once with pneumonia. And I spent countless hours trying to learn exactly how to be an expert at Down syndrome so that I would know if the NJ State therapists assigned to my child were doing it right.

 

Enter Stepping Stones. I may very well have been the most reluctant mom there. I arrived and the reality was that although I was “really doing well”, I “really hadn’t processed” many of my feelings about having a child with Down syndrome. And I was pretty angry that I had to sit in a room and talk about those feelings. But here’s where the story gets good. At Stepping Stones I learned to live in the “other” world too – the world of parents whose children have Down syndrome. And I have met the most amazing families, and lifelong friends in that world.

 

I learned that I didn’t have to become an expert on Down syndrome, because at Stepping Stones, the experts are right there. I could finally breathe a little, because I knew that my son was in good hands. Stepping Stones has a staff of highly experienced teachers and therapists, and a program that for more than thirty years has been helping families of babies and children with Down syndrome. I got to meet parents who lived close by, whose children were the same age as mine. Parents who knew doctors that were smart and compassionate. Parents who were able to navigate the transition from Early Intervention to Preschool. These people “got it”, and not only cried with me, but also shared my joy at each little miraculous triumph!

 

I learned so much about my child, and myself. Somewhere along my journey, I learned that my greatest challenge as a mother was to find a balance between my worlds, to learn to live in both worlds. And I credit Stepping Stones with giving me the tools to do just that

“Hello, um…my name is Jennifer Blougouras. I just had a baby two weeks ago, and he has Down syndrome.”

 

This was the call I made to Stepping Stones on a bright, sunny morning in mid-April of 2005. I was a wreck. When I was thirty-seven weeks pregnant, we had discovered that our son, Nicholas, would have Down syndrome. On a routine ultrasound, the doctor noticed his legs were measuring short. This led us to get a more high-powered ultrasound. Which led them to discover a heart defect. Which led me to get an amnio. Which led to a very late diagnosis of Down syndrome. Prior to this, we had “passed” all the screening tests. And now, this life-changing diagnosis. Our world came crashing down. Life, as I knew it, was over. This was a fate worse than death. Or so I thought.

 

Still, there was a baby. A baby who would need things. A baby who would need me to keep it together. I didn’t have the luxury of falling apart. “I know he’ll need something called Early Intervention,” I asked a geneticist at the hospital. “What is that and where do I find it.” “Look it up in the Yellow Pages,” he said.

 

And then the phone calls began. I found myself in the Byzantine, confusing world of Special Needs. Words like “Service Coordinator,” and phrases like “IFSP” baffled me in my fragile state. Red tape and multiple phone calls filled my days. I was simply another case number. And no one called me back. I would leave beseeching messages, begging people to call me back so Nick could start services, all the while hating the fact that I even had to call these people in the first place.

 

I went on the NADS website message board. I posted a message: NEED HELP IN NORTHERN NEW JERSEY. I posted about what a difficult time I was having—both emotionally, and on a practical level, getting EI set up. A very kind woman in Sparta, NJ, gave me the name and number of Stepping Stones. I placed the call. I didn’t have much hope that I’d get a phone call back. I thought Stepping Stones would be another place I’d have to chase down and repeatedly call. To my amazement, Judy Bellina, the Director of Early Intervention, called me back in five minutes. I was shocked. Someone cared. I was a priority to someone.

 

We made an appointment for my husband, son and me to visit the school in two weeks. “What should I be doing in the meantime? What kind of exercises, what kind of positions?” I asked Judy. I felt that time was slipping away, that I was losing crucial information about how to stimulate him, how to help him.

 

“His job right now is just to be a baby,” she said. “He’s just a baby.” Maybe Judy didn’t realize it at the time, but these words were the first thing that put me on the road to seeing Nick as Nick. Just a baby. Not a diagnosis. Not a thing that needed to be stimulated. Just a baby…

 

When we got to Stepping Stones two weeks later, Judy had us sit in on an Early Intervention class and I remember crying as I sat there, and trying to hide it. Yes, I was still sad that we had to be here in the first place, but there was something else to my tears. I looked around the room, at the mothers and fathers working with their babies; at the therapists giving information and demonstrating various techniques. A dad, cradling his little baby girl in pink. Two ten-month-olds, face-to-face, passing a rubber clown back and forth, while their mothers kneeled behind them. A solemn-faced mother with dark hair, tenderly removing the socks from the plump feet of her four month old. These were our people. Our people. We weren’t alone anymore. And that’s why I cried.

 

Today, Nick is a happy, healthy three-and-a-half year old who attends the pre-school at Stepping Stones full-time. So much has changed in our lives since that first phone call back in mid-April of 2005. But one thing that hasn’t changed is the fact that every time I walk through the doors of Stepping Stones, I think, “Our people.” And instead of crying, I smile.

Jennifer Blougouras,