I imagine that many parents play the “someday” game like I do. Someday I’ll get to eat a meal at home in peace. Someday I’ll start working out again. Someday I might actually have hampers that are empty.
When you have three young kids, including a toddler son who has Down syndrome and a twin sister, the “someday” wishes take on a whole new dimension. Someday our son will play outside without eating dirt. Or sand. Or chalk. Or mulch. Someday we won’t have a sick ward at our house every other week. Someday I won’t find myself regularly saying “Please don’t ride on your brother like a horse.”
Someday I will no longer have to change two dirty diapers first thing every morning. Someday everyone will stop needing everything all at once. Someday our son will speak a sentence and run as fast as his twin sister.
When you have a child with special needs, some days it seems like he will be doing the same things for-ev-er. One mom I met said of her youngster with Down syndrome: “It feels like having a one-year-old for two years.” Our kids get stuck in patterns and it takes extraordinary feats of perseverance to break out of them, or the patience to wait them out. And let’s face it people, I am woefully short on patience.
Yet if I look even a tiny bit into the past, I see how far our son has come. I almost hate to put this into print, but we have been able to (mostly) tame two of his most stubborn habits. He used to always throw food or drinks off his high-chair tray, but now hardly ever does. One trick from his therapists: tape or draw a circle onto his tray and tell him to put his drink THERE. You can do this for plates too. We had to reinforce the concept ad nauseam, but after months and months it finally sunk in.
Children with Down syndrome are visual learners, so having this visual cue helped reinforce the lesson. We also virtually eliminated (and trust me, it is still there from time to time), his habit of pulling his sisters’ hair every time their curly heads got in his line of sight. We used stern no’s coupled with time-outs or redirection to a doll with yankable hair. It wouldn’t have worked unless we did it every single time this happened, even if it was three times in six minutes.
Let me add that I give him the most credit of all for these changes. Chances are extremely good that he simply just grew out of these behaviors, that his stopping had nothing whatever to do with us. He tends to have his own ideas about everything anyway.
I am so glad too that his infant days are over. It sounds like a terrible thing to say, but that was a very hard time for me. He had terrible reflux and seemed to always be covered in spit-up. He didn’t seem to enjoy being touched and took longer than average to make eye contact with anyone or anything. His body was completely floppy — he didn’t sit up on his own until he was about 13 months old. He seemed unhappy a lot, whiny and tired. Probably because the poor kid was so congested. When he was about 17 months old, we finally got drainage tubes put in his ears and things were much better.* (See below for more on ear tubes).
So what am I doing when I’m not waiting for those blessed somedays? Pining for the present, of course. How can you pine for something that isn’t gone? A parent can. As overwhelmed as I feel by the relentlessness of it all, I know that “someday” will also bring an older, slightly more wistful version of me, looking back fondly on this little cocoon we created here with our Three Bears. The days before the big bad world of school systems and buses and children who curse, kick and spit. And by this I mean the future versions of my own darling children.
So what say you, parents of older children? My oldest is just 5, and I am still in the stage of feeling sucked tightly into a child vortex that will not let me go. It is frustrating and exhausting, but also exhilarating in its intensity and boundless in its warmth. But how DO you savor these early years, as people always cluck at you to do, usually when you are at your most sleepless? How do you savor something that you long to escape from on many days? Is it possible to let this precious time pass by without any regrets?
We all know how hard it is to pause and remember a moment. And admit it, you’re as bad as I am at organizing your digital pictures and videos. So, how to keep the memories always with you? I take mental pictures, which differ from actual memories only in that you’ve chosen them, or maybe they’ve chosen you, and you’ve taken purposeful care to remember every specific detail.
In the episode of “The Office” where Jim and Pam get married, they are in the car driving to the wedding and Jim is explaining to Pam that his aunt taught him a trick for remembering their hectic special day. Take mental pictures. He pantomimes holding up a camera and pressing the button. “Oops,” he says, “you blinked and now I’ll remember your face like that forever.”
I have favorite mental pictures of my three. For the oldest, my little mommy’s girl, it is a morning when she was about 2 and my husband had taken her out of her crib in our apartment. Silently, wearing purple striped pajamas and with her curls forming perfect ringlets around her head, she made a beeline for me in the kitchen and fell into my embrace.
For my younger daughter, as feisty as they come, it’s a similar image. Her running full tilt at me, wearing just a diaper and yelling “mommy” and throwing her chubby arms around my neck, then bending backward and laughing maniacally, trying to wring a thrill out of it like she does with everything. And for our son, I have a few. But a recent favorite is him standing behind me and grabbing my shoulders, his “70’s Show” hair falling over one eye, and him moving from shoulder to shoulder saying “boo,” and laughing when my face meets his.
What are your favorite mental pictures from your life? Leave a comment or send me an email: firstname.lastname@example.org. If you email, let me know whether or not you’d be comfortable with me sharing it in a future post, your first name attached.
* If you are a new parent of a child with Down syndrome, read up on ear tubes. Also ask for recommendations for an ear, nose and throat doctor, or ENT, who can help evaluate your child’s hearing and weigh the possible need for tubes. For us it was a very simple, but life-changing surgery. Even though recent studies urge caution in recommending tubes for typically developing children with recurrent ear infections, medical guidelines suggest inserting them without delay for those who have recurrent fluid build up coupled with underlying medical conditions like Down syndrome. Click here or here for more information on how Down syndrome can affect the ears, nose and throat. And as always, every child is different, so consult with a professional about your child.