Parenting is a tough job. It can be thankless, isolating, and there’s no overtime pay despite it being a 24/7 role. Parenting a special needs baby is that, times about 100. From the outside looking in, I’m certain that parents who see us at parks and activities are thinking “what a shame.” I get it. I really do. I would have thought the same 4 years ago. But now, after parenting my little chicken who happens to have a rare syndrome for 3+ years, I don’t. Not anymore.
Of course, not all special needs kids and parents are the same. But here are 5 things about parenting a special needs child that I think the world should know.
Parents of special needs babies are so very tired.
I know every Mom of a small child is tired, but I was really, really tired. My second child, born with a rare syndrome called Williams Syndrome, slept 5 hours a day from five months to 25 months. Those hours were 5 AM to 10 AM. From 11 PM until 5 AM she screamed. At 6 AM, my boy was up and eager to start his day.
Then there were countless doctor appointments, therapies, time on hold. Oh, and pumping, actually doing the exercises she was given, caring for the first child, going back to work. I suspect you’re tired just reading this. So if you know someone who’s in this place, cut them some slack. Don’t say “I totally get it, little Johnny was up three times last night.” Just say: “Tired is the worst, you’re gonna get through this, and it’s a good thing the baby is cute.”
Being a special needs parent is complicated. Loving a special needs baby is not.
When the diagnosis came, I wondered how I would ever manage all things that came with it. I was suddenly faced with a whole new language, new team, new perspective on her life. I would drive to the grocery store and cry in the parking lot, wondering how I was ever going to deal with all extra stuff that was suddenly part of our world.
But don’t confuse the feelings I had about how I was going to manage this complicated life with my feelings for my baby. She’s perfect, and I love her to bits.
Yes, there are days when we wonder “what if things had been different?”
In the beginning, it was something I wondered probably every day. I’d see moms gathered together at coffee shops nursing and smiling and talking about baby stuff as we hurried in to grab a tea between appointments and wonder if we would be there, if things had been different. And then those babies started to walk and started to talk. They started running and jumping, and the babies six months younger than mine started to reach those milestones, a year younger.
It still stings when I’m confronted with unexpected reminders of just how different my child’s path is, and I think it always will.
What makes her special to me isn’t what you think makes her special.
I see you looking. I hear whispers and catch sideways glances. I know some avert their eyes. “She looks like a regular kid,” I hear you thinking. “What’s wrong with her?” you wonder.
I believe the term “special needs” is misleading. There are things about her that make her different from other kids, and she certainly has additional needs. My typical son does not have 22 doctors, specialists and therapists on his care team. But what makes her special to me is her enthusiasm for life, they way she dances even when she’s sitting down, and how she pats when she hugs. Her syndrome is one of the least interesting things about her.
I’m not sorry, and you shouldn’t be either.
I have felt all the feels about her syndrome. I’ve been angry, confused, and resigned. I have cried until I can cry no more. I have been proud as she continues to surprise and sad about all the things that won’t happen the way we expected. But not once have I been sorry that she came into the world. I’m not sorry that she has changed the way I see things, or that she fuels a desire to change the world for her. I know things I didn’t know. I see things I had never seen before. I embrace things that used to scare me, and I love more deeply than I ever thought possible.
When you meet my child and hear our story, please do not say you’re sorry. Say you’re interested, say “that’s a lot to handle,” say “wow,” say “how can I help?” I feel lucky that I got her, not lucky that she got me. I’m not sorry. And if should find that you have a child with special needs, after you get over the initial shock, process and feel all the feels, I can promise, despite everything that is heaped on your plate, you won’t either.