When my son Joey was born in 2010, we knew very little about Down syndrome (clinically known as Trisomy 21) other than it meant that he has three copies of the 21st chromosome instead of two. We were told by the not so tactful nurse in the NICU that a lot of people would like to adopt a child with Down syndrome. We were told by the cold doctor that broke the news to us seven days after he was born that he may be able to put two words together, We were told he would be dependent on us for his whole life.
But what we soon learned is that he is a gift that brings overwhelming joy and laughter to our lives. Joey is just like any other child. Some developmental milestones take longer for him to master. He walked later and he talked later but soon mastered both. At seven, he can do much more than “put two words together.” He tells us “that’s annoying.” He asks “How was your day mom?” He teases his big sisters and he sings as loud and as often as he can.
One milestone we are still working on is toilet training but there is progress and we will eventually get there too. For the foreseeable future, academics will take a lot of work! He is in his second year of a mainstream Kindergarten that is co-taught with a special ed teacher in the classroom and he has a 1-1 para. He knows many site words, but cannot spell them and has a hard time identifying them in a sentence. His lower muscle tone makes it difficult to write and he gets tired out easily. He will learn to read and write but with a lot of practice!
I also have no doubt that one day he will live with independence. Today, he can dress himself, brush his teeth, cook toast and waffles and butter his own bread. He is the best among my three of putting his stuff away. And he can work a TV remote, iPad or iPod like no one’s business. He loves to help with household tasks like sorting laundry, using the sweeper and cleaning the windows. This morning he helped me make my coffee.
But what I most appreciate about my son is that he understands the simple things in life. He knows when the music moves you, you just have to dance and sing like no one is watching. He understands the power of a smile to brighten someone’s day. He teaches us to celebrate our accomplishments (even the small ones) when he shouts out, “I did it Mom!” And he inspires us that when we struggle with something we are working toward, to shake off the setbacks and keep trying. Most of all he has taught us to accept people for their gifts and abilities and look beyond the surface.
So on 3/21 – World Down Syndrome Day – I am very thankful for the little boy God sent to teach me about love. If you would like to support our journey, please consider a donation to the Down Syndrome Association of Atlanta today! https://dsaa.nationbuilder.com/give