Impact Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013)

The 2009 Impact on early childhood education and children with disabilities asked, “How can families and early childhood professionals provide quality, inclusive early childhood education for young children with and without disabilities?” Among the success stories in the issue was the following by Samtra K. Devard about her family’s experience seeking inclusion for her daughter Lauren.

I can remember how excited I was at the birth of our daughter, Lauren, as if it were just yesterday. She is our firstborn and the first grandchild on both sides of our family, so her entrance into the world was fit for royalty. Lauren was welcomed into the world with all of the love that our hearts could hold. When we were given the diagnosis that she had Down syndrome, we weren’t given any hope for our daughter’s future or any information about the positive things that we could expect. We felt lost, alone and afraid. We were left with so many questions: Would our daughter experience the world – just like everybody else? Would she have friends? Would she one day find love? Would she live independently? Would she be educated with other students her age that didn’t have a disability? Would she be included?

I quit my job to be home with her. I was afraid to let her go. I didn’t know about the capacity of early care and education centers to handle a child with a disability. I didn’t feel as if I could trust a stranger to care for our daughter the way I knew I could. Our daughter’s natural environment was our home. We received all of our early intervention services in our home for Lauren’s first three years. When it was time to transition out of early intervention into our local school district, it was the beginning of our journey to make sure that she experienced the world like any other kid her age.

Lauren’s 3-year-old program was a playgroup with typically-developing peers run by our school district. As the time to let my baby go drew near, I had apprehension about this new environment. I was reluctant to show how afraid I was. How could I be sure – really sure – that the staff would know how to meet my daughter’s needs? How were the other kids going to respond to my daughter – especially the kids without a disability? I wished I could talk to another mom of a child with a disability so that I could know I wasn’t alone.

When Lauren started the program, she cried when she had to leave me. Lauren wasn’t the only one suffering from separation anxiety: Her tears were my tears. I remember not being able to leave the door to her classroom. I kept peering through the little window, watching and wondering how things were going. The staff was wonderful with our daughter and extremely patient with me.

As time marched on, Lauren settled in to her new surroundings. My comfort level grew as I began to see her doing well. The teachers were warm, compassionate, and sensitive to how Lauren was transitioning. They let her comfort level guide them. All of Lauren’s therapies were conducted while all of the children played. We soon discovered that Lauren is a social butterfly. She showed compassion for her friends and was the one who would tend to a friend who had an issue. It was good for Lauren to experience friendship. It came much easier than I expected. All of the kids were kind and considerate. The playgroup was rich in language and communication models. Lauren picked up on so much from watching her peers. Our first experience with an inclusive program went quite well. It was high quality, my daughter’s unique needs were met, and her differences were embraced.

It wasn’t until Lauren began her pre-kindergarten program that I figured out that our journey wasn’t only about getting her needs met – it was also about our needs as a family. Our family’s needs encompassed figuring out and giving voice to our hopes, dreams, and vision for Lauren’s future. I soon discovered that I had to become an advocate for her and partner with her educators to ensure that Lauren experienced success in her program. At first, I didn’t know what an advocate was. I didn’t know my rights. I didn’t know that the voice of my family is what really mattered when it came to programming decisions about my daughter. It was during Lauren’s 4-year-old program that I started the journey of becoming an advocate for Lauren and a partner with her educators.

The staff was empathetic toward me and honored the needs of my family. Because of my expanded role as a partner with Lauren’s educators, Lauren blossomed. She absolutely thrived. She made friends and her social skills grew exponentially. We got Lauren successfully potty trained – with the help of the staff (who had unbelievable patience) and also with the help of the other kids in the class. We saw the level of compassion grow in all students. Lauren was exposed to good language and communication models, and grew in confidence and in pride in her achievements.

While it was often the case that Lauren benefited from typical peers as models, she also served as a model for typically-developing students as well. At the beginning of the school year, Lauren’s teacher pulled me aside. The teacher was just getting to know Lauren and didn’t fully know Lauren’s abilities. It was snack time and the teacher said she began to hand out snacks. She had given snacks to three or four students and then she reached Lauren. She gave Lauren her snack and Lauren said, “Thank you.” She said it stopped her cold. First, she was surprised that Lauren knew to say thank you. Second, she had not heard any of the typically-developing students say thank you thus far and she let it slide. When Lauren demonstrated her manners, she backtracked and asked the other students to use their manners and say thank you. It was wonderful that Lauren had positive behavior to model for the other students. It made my day.

Not only did we seek inclusive educational environments for Lauren, we ventured out into our community and found experiences that were also beneficial to her. We registered her in an early childhood movement class. We discovered Lauren loves to dance. The dance instructor was trained to handle the needs of all children and worked with Lauren so that her participation was meaningful and, most importantly, fun for her. She made friends in dance class that have lasted to this day.

Lauren is now 8 years old, and while her future remains uncertain, we are full of hope. We have also discovered the answers to some of our most burning questions during Lauren’s early childhood experiences: Yes, I am an advocate. Yes, Lauren will be included. Yes, Lauren will be educated with her typically-developing peers. Yes, inclusion is a good thing.