This blog post is part of a special needs blog hop with the “International Alliance of Writers For Down Syndrome,” on the subject of what people say about your child with special needs, and what you wish they would say instead.
I was an arrogant first time mom. I really was. Violet came a bit premature and we had a ten day stay in the NICU, so I felt I was well seasoned when it came to “hard” parenting. She was so easy and I took all the credit. She eat, slept and babbled on schedule and with very little fussing. Sheesh, this parenting thing is easy! What’s all the fuss and stress about? I could do this ten more times, no prob.
And, so the Lord, in His infinite wisdom and humor, sent me Dash.
And this became my motto.
That boy didn’t sleep. He nursed voraciously, but wanted more, more, more! Early on, he made it clear, things need to go his way, and his way only.
I learned so much in parenting Dash, a strong-willed child, if I ever met one. And, I stopped saying how easy this parenting thing is. I said sorry for bragging on how well Violet slept and begged for tips, any tips on getting this child to stop screaming all.night.long. I read a lot of parenting books.
And somehow, in that sleep deprived, blurry state, I got pregnant again. Actually, we had gone to Thailand in January, escaping for a few weeks a brutally cold winter in Afghanistan, and Mr. Incredible always says it was because we were finally warm again. Ahem.
And, then, Jack Jack was born.
And I had to buy a whole new set of books. And learn a whole new way of being a parent.
People didn’t know what to say. We heard “I’m so sorry” over and over again until I wanted to scream, “why are you sorry?? We have a baby!” People said all sorts of crazy things, most of them well meaning, but the one that knocked me to the ground was when a hospital chaplain, looking at my sweet boy through the nursery window, hooked up to wires and tubes said, “Well, at least God gave you TWO beautiful children.” I hissed at her through my teeth “I have THREE beautiful children” and then went to my room and sobbed.
I learned to stand up for Jack Jack and demand that he be spoken of in a respectful way by medical staff. We went in for an eye exam when he was a newborn and the crotchety old doctor glanced up from his clip board and said, “so, he is Downs.” and I said, “no, he’s a baby” and we walked out and drove an hour to another town to see an eye doctor who saw Jack Jack as a person who has Down syndrome and not “a Downs kid”. Speaking of Jack Jack as a person before a diagnosis became very important to me.
Well meaning folk at the store or at church never get a lecture from me. I love their heart and affection towards Jack Jack and if they use an outdated term or ask “how he’s functioning” I try to answer nicely and if it’s appropriate, educate them a little as well. If someone tells me, “they are all so sweet and loving” I love saying, “Yes, he really is, but you should come over sometime when he’s pitching a fit over having to put toys away or got a spanking for yelling NO at me” and I hope they realize that he is a kid with a full personality and range of emotions, and not a Labrador.
I hope people will see Jack Jack as a kid first and Down syndrome as just a part of who he is, and I feel that using “people first language” will help make that a reality. I hope that when I talk with other moms, we can stay off the comparison train and focus on heart issues versus whose kid walked first. And I really hope that I remember those early lessons myself of not being a “know-it-all” and minding my own tongue above all else.