Lightning in a Bottle

Having a child with a disability will bring out the very best and reveal the worst in you. They say that necessity is the mother of invention, I know this to be true. My fear of Noah being alone or left out, FOMOFYC, fear of missing out for your child, is real! Having a diagnosis of Down Syndrome is an odd thing, everyone would come to anything and everything I planned and hosted but invitations were few and far between.

Since my mom and I are both teachers by trade, I proposed to her the idea of creating a schoolhouse for Noah. A place where we could gather his friends once a week and offer companionship, learning and exploration. My mom, Cathy, is the quintessential decorator. When she was young, she would decorate anything and everything that crossed her path. One of my favorite stories is when she was younger, she would go down into the storm drains, where the water would run off the roads and adorn the space! She lived in a borough of Newark named Brookside.To this day, she/we run a staging company named Brookside Inc where we go into people’s homes and stage them so they can put them on the market. Just this week, I was redoing my dining room, and couldn’t make a piece fit, my text to Mom…Brookside#911….and immediately she appears ready to put her talents to use.

With that being said, Mom was all in when she realized that she would get to turn our unused migrant home into a play space. It combined her two loves, children and sewer decorating! ❤️ We painted the walls a sea foam green color and put big colored circles on the wall. Joe ( my handyman) installed a toilet donated by Stacey, whose son Derek was one of our students. Carol brought brightly colored fabric in pastels that we swagged from the ceiling. We painted the floor and added more circles. The doors were painted with chalkboard paint so the kids could draw on the walls. Easels were bought, bins were filled with puppets and crayons. Mom purchased smocks for each of the students with the Daylilly emblem stitched on them. It was a true labor of love.

Since Noah and his friends varied in ages from 3-6 the first year, with Noah being the youngest, I knew I wanted to minimize the gap in learning abilities as much as possible. The best way to do that was through song, rhyme and play. We would start each co-op with show and tell. Each student would bring in a possession and explain why the object was important to them. It incorporated so many learning domains: language, sharing, ingenuity, turn taking. Mom and I were included in this exercise so we could model all of these traits for our young explorers. Most children with Down Syndrome have issues with speech. Hypotonia and differences in the structure of mouths and tongue are a big reason why. When Noah would share his ideas and interact, all his friends quickly developed an understanding of his speech.

We would then work on language skills by introducing nursery rhymes. The cadence and tempo of these century old verses have proven reliable in helping children with memorization, singing and pronunciation . The kids would then pair up and perform a retelling of the rhyme their own way. The only caveat was that they had to work together and share the stage equally. Derek, Stacey’s son was the oldest of our students. He always wanted to go first, no matter what we were doing. One day I pulled him aside and told him, “those who are first on earth will be last in heaven!” Derek looked me square in the eye and replied, “I’m o.k. being last in heaven! “

We would snack together while playing a myriad of beautiful music Blue Danube and anything by Louis Armstrong were their favorites. Letters were learned, art was created. Each week we would take a book, for example, Wacky Wednesday, by Dr. Seuss . We would come to class dressed to match the theme of the book, in this case our pajamas, and do everything backwards. The kids were the teachers, we did outside playtime first, and afternoon snack was breakfast. We had a tire swing, a trampoline, four horses and chickens. There was no end to the mayhem we found ourselves in.

My oldest daughter Zoe, now has two little girls of her own, Charlotte-Mae ( Mae-Hem) and Callie Jo ( Calliegator) and she has recreated our schoolroom in her playroom in Florida. I see the play cash register, we used for the Green Pocketbook, the plastic bowling pins that we used for P.E., the cradle we rocked countless dolls in, the books that line her shelves hold a thousand memories.

We built the schoolroom so that Noah would be surrounded by love and acceptance, little did I know that a whole different generation would receive the blessings we created a decade and a half earlier. Each story, game, song and craft I do with my granddaughters reminds me of stepping out in faith years ago….trusting if we built it, they would come!

5 thoughts on “Lightning in a Bottle

  1. It has been so sweet to read your posts and hear some of your inner thoughts, and external processes as you walked through this new season of parenthood with Noah.

    Thanks for sharing this with us ☺️

    Liked by 1 person

      1. Yeah, I bet. I am looking forward to each new post – so, even if it’s just for me, keep them coming! I have no doubt this is an encouragement to parents going through the same thing, or really, any parents having to overcome any unknown situation.

        Liked by 1 person

  2. I had a moment to sit and read one of your blog and was instantly taken back to Saige playing in the school house when we came over. She loved your house and your family. What a special time!!! Love you my friend!

    Liked by 1 person

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