Gwendolyn’s Kindergarten Experience

This year has been such a pivotal year for Gwendolyn. She has socially thrived, academically blossomed, asserted her independence, and she has really come into her own. Our entire life's focus is to see Gwendolyn happy, to see her live a meaningful life. In this year's kindergarten experience, we know with full certainty that her life is exactly as she wants it to be — with her right in the middle of everything.

From the first day of school, Gwendolyn was met with love and understanding. The children flocked to her, not only in her classroom but out on the playground with all three of the kindergarten classes, and soon out in the hallways with all of the other grades, too. This is something Bill and I still marvel at — the way in which the children play with her, talk to her, and connect with such natural ease is, well, simply beautiful.

Watching these social interactions, the quiet moment a child reaches out for Gwendolyn's hand, the boisterous calls of, “I want to be Gwendolyn's partner,” or seeing them lean down and speak directly to her then watching her eyes closely for her response… These things, these simple moments that many may not even notice, these are the things that mean so very much to our little girl. Real and true belonging. And it is these collective moments that have allowed Gwendolyn to grow confident and more certain of herself.

Our main goal for the year was for Gwendolyn to be included — that was accomplished within the first two weeks completely organically. The children had questions about Gwendolyn the first week or two: “Why does she wear that on her face?”, “How does she get dressed in the morning?”, “Can she talk?”. But after their curiosity was satisfied by responses from Bill, Nurse Tina, or me and after loving parents also reaffirmed questions at home (we sent this letter to each parent), the children moved on to create their own relationships with Gwendolyn.

I will never forget the first recess a child proudly said, “I have an idea for a game that we can all play and Gwendolyn can, too!” It was ring-around-the-rosey and she was right, they each grabbed a hand, including Gwendolyn's, and around and around they went falling down in hysterics with Gwendolyn proudly beaming. That was just the first time they created games and ways for Gwendolyn to be fully involved and those games have gotten a lot more sophisticated as the year has gone on. While it is clear that they know Gwendolyn has limitations, they want to play with her so much that they figure out how to work around physical abilities — without an adult having to guide them on how to do that.

The school is full of wonderful people who really go above and beyond to create a supportive environment and treat Gwendolyn with dignity and understanding. Every day Gwendolyn visits the office and is greeted by the office secretaries, the school nurse, and the principal with enthusiastic big hellos — and usually stickers wink

And, of course, she has completely and thoroughly bonded with Tina, her one-on-one nurse who has helped make every school experience one of inclusion and endless possibility. With Gwendolyn's medical fragility and because she is non-verbal, Bill and I go with Gwendolyn to school every day (we alternate days). Even though she has a nurse, we didn't feel it was safe or fair to just drop her off on the first day of school and pick her up at the end of the day. At the beginning of the year, we were right next to her side, along with Tina. This gave Tina a chance to see how we interact with her, how we help other children interact with her, how we adapt activities to work for Gwendolyn, how comfortable we are with play and touch and movement, and how we read Gwendolyn's communication queues — both academically and medically. Because Tina is such an incredible person, warm, insightful, and willing to be silly, she and Gwendolyn understood each other within days. And quickly, Gwendolyn demanded increased autonomy from Bill and me, preferring Tina as her righthand woman. We were relegated to the back of the class, just like the other parents. And now, at the end of the year, we have both had times we have stepped away — we've even gone off campus to the local coffee shop. This is a very big deal for us (Gwendolyn was unfazed) and a testament to the wonderful person Tina is and the environment that has been created at Gwendolyn's school.

We get a lot of questions about the logistics of Gwendolyn being in school. A portion of the answer is it takes a lot of work and a lot of creativity by a lot of different people to make it happen. It also takes kindness and understanding and people who naturally want the best for her and rally her every success. And for that, we know we are extremely fortunate to have such good people and such loving peers in her life. SMA can be so limiting. Bill and I can honestly say with full conviction that Gwendolyn does not allow SMA to define her. And even more, she has not ever allowed us or others to let SMA define her. Seeing her flourish this year in school, she is clearly the person she was born to be.

Only four more days of school left and we are so, so proud of our confident, social, amazing almost First Grader!