Today I woke up at the blessed hour of 7am, which is rare given that I have a 3 year old and a 7 month old! Henry, my 3 year old, was sitting patiently in his room babbling to himself, so I gently extracted myself from my baby girl and went to pick up my son. I usually reach out for him as he throws himself into my arms saying ‘mama’, buy today he climbed out of his toddler bed and ran around my outstretched arms to the stairs and, ultimately, his toys.
We always start the morning off with his “Amuse-Bouche” (French for a single, bite-sized morsel to ‘amuse the mouth’), which is his daily thyroid supplement mixed in with a tiny bit of food. Many people with Down syndrome have thyroid issues which can impact their growth and development. Henry has his thyroid level checked every 6 months so we keep his numbers where they need to be. Henry doesn’t like being interrupted from playing, but he likes his ‘Bouche’, as we call it. We make eggs and toast for the whole family and eat breakfast, taking turns dunking our toast into the egg yolks. Sometimes during breakfast we sing, sometimes we do flash cards, and sometimes we just chit-chat.
The routine varies if it is a weekend or weekday. Henry and his baby sister Pippa go to school, which they love. Henry has a little blond girlfriend who plays on the tricycle with him, dances with him, and sometimes holds his hand. Pippa has two ‘older’ boys’ attention, which does not surprise me one bit. Weekdays are a general rush to get the kids with full bellies, lunches packed, and off to school. We love Henry’s school, which is inclusive for children of all abilities. I always laugh because I don’t see many differences at all between Henry and typical 3 year olds. Henry loves his teachers and his friends at school. He knows all the colors and letters, can count to 10, and is starting to read. He loves books, music, animals, and the playground.
Today was a weekend. I made some tea and Henry signs “hot tea” because he knows it’s piping hot from the steam. The other day he howled with laughter as he signed ‘Chickens make eggs.’ Henry’s first language is American Sign Language (ASL), which was introduced to him by “Baby Signing Times” and via Mommy and Daddy. We had learned that children with Down syndrome sometimes have delays in speech, but that ‘bridging the gap’ with ASL over the years until speech is more clear can offer amazing benefits in both language development and everyday communication. We learned ASL because it can help him be more accurate and descriptive. We can hardly keep up with the amount of words he wants to know! We’re also teaching ASL to Pippa right now and enlisting Henry’s help to show her signs like the big brother he is.
After breakfast, I ducked away for a couple hours in the morning to play tennis and catch up with my girlfriends. Daddy took the kids to play in our backyard while I was gone since it was a beautiful spring day. On my way home, I realize that next time I’ll have the whole family come watch me play. Henry loves his tennis racquet and asks to play all the time. I want Henry and Pippa to see their Mommy play too, although maybe today wasn’t the right time – Since I lost badly! Maybe I’ll bring them to one of Daddy’s matches, I think.
I get home just after lunch, and Henry is watching Sesame Street and refusing to nap. Since he hit 3, he is now too cool for naps at home. He does nap at school sometimes, but at home he doesn’t want to miss our exciting day of cleaning and laundry. He pitches in, throwing away his trash when asked, vacuuming, and cleaning up his toys, but only when he’s told. We go for another walk after lunchtime, and enjoy the sunshine and the neighborhood play ground. He climbs up the ladder all by himself and bravely swishes down the slide, surprising himself every time he lands on the pine straw with his tush. I thought we’d all be cold, but the sun is shining and spring has truly come.
That evening, we decide to take the kids out for a beachfront dinner. They love eating out and we want to make sure they grow up knowing how to behave in restaurants. We order the seafood platter and the fettuccini with clams. We share with Henry but he prefers the French fries, dipped in cocktail sauce. Pippa dives for the hush puppies. A seagull weaves in and out under some of the nearby tables, searching. Henry sees it and gets excited, shouting and signing “bird”. After dinner we walked the pier and pointed out the seagulls in the sky and surfers on the waves.
Bedtime is brushing teeth, a bath, 4 books, and a song. Henry picks the order of his books and usually tries to scam us into an extra. He is currently into ‘Elephant & Piggie,’ Pete the Cat,’ ‘Llama Llama,’ and ‘What a Wonderful World.’ I’m learning the signs for the songs ‘What a Wonderful World’ and ‘Build Me Up Buttercup,’ mostly because he gets a kick out of Mommy signing.
When Henry was diagnosed shortly after his birth, I wanted more than anything for someone to tell me what to do. We knew we were lucky to have Henry and we were incredibly thankful for his health. We loved him exactly as he was, Down syndrome and all, from the moment that we had him, but I wanted a manual to help me not feel so alone, so floundering. But more and more, I realize that the Down syndrome has added something to our lives that I don’t know we would have had otherwise. Partly because of his diagnosis, I appreciate every second of love and happiness this world has to offer in a way I’m not sure I would have otherwise. I’ve started to realize that if there had been a guidebook, we might have missed out on butterflies, on 5K races, on kissy parties, on swim lessons, on airplane rides, on Christmas cookies, and on all the music, dancing, laughter, and sunshine that Henry has brought into our lives.
Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).