5 pieces of advice all parents of kids with special needs need to hear

We weren’t prepared for Brinley. No one was. No test or ultrasound told us to worry. But immediately following her birth, the differences, the anomalies, began to add up. Extra fingers and toes were just the beginning (24 total). She was weak and had trouble breathing and was bundled off to the NICU. My exhausted wife, Tiffany, and I stared at each other, unbelieving, tears leaking out, joy chased away. For the first time, we were grappling with something we’d never faced–the concept of a child who is “not typical.”

What I wouldn’t have given for “typical” in the following weeks. A few days into Brinley’s NICU stay, a scan revealed she had a severe brain malformation. The extra fingers and toes became an afterthought. Something purely cosmetic. The latest way our new little girl was different, this “cauliflower” brain the doctors described, could mean what? The doctors were noncommittal and grim. What hope is there in that?

Tiffany and I were running out of threads to hang on to. The whole fabric of this child we imagined, one that fit the same pattern of our other two children, our family, was unraveling in our hands.

In those early days, it is hard to know what sort of counsel would have made our lives easier. We became NICU parents, slipping into the routine of hushed tones, heavily upholstered chairs for nursing mothers, caring but pragmatic nurses, unique-to-the-hospital smells, your child among all the others struggling at the start, stumbling off the blocks. You grasp on to anything new your child is doing. Anything. A lifted hand, at this point, is a leap. Keeping food down, a miracle.

  1. The most important advice is this: accept help. You’ll be surprised how many people will start reaching out, ready to lift you and your child up. Three years later, I know how much this is true. Family, church, work, communities, parents going through a similar experience, a kind word in the checkout line. Don’t be scared to accept the hand when it comes. Forget pride.
  2. Search out parents like you. There are a lot of us out there–parents of “not typical” kids. You find this out quickly. It’s a lot like learning a new word–something like “vertiginous”–and seeing it pop up all over the place. The word was there all the time, but you hadn’t ever noticed it. So it goes with atypical kids and their parents. Those are some of the best helping hands to grab, because people like us are closest to understanding what you’re going through.
  3. Experts exist and you should take their advice. When your child isn’t typical, you feel like the script of your life has been shredded. In some ways, it has. But some of the best Saturday Night Live skits are improvised, right? The experts know a lot of good ways to help you improvise now that your life script has been tossed.
  4. If you have other children, treat your new child the same as much as you can. Brinley is exceeding everyone’s expectations at this point in her life. I think part of the reason for this is that she doesn’t escape discipline, isn’t hovered over, and does as many things on her own as possible. She gets into minor scuffles with her brother, annoys her big sister and asks (repeatedly) for what she wants until someone acknowledges her. Like her older two siblings, she makes us laugh, makes us frustrated, makes us wonder about her future. Even if your child is your one and only–in how you treat them, how you shape them and how you love them–find ways to bring the typical into their “not typical” lives.
  5. Dwell on the good. I said above that accepting help is the most important piece of advice, but that may come second to this one. Early on, I found myself fixated on what was wrong with Brinley. I spent a lot of time alone with her during her late-night feedings. She and I had long conversations that were, yes, a little one-sided, but I needed them to get over feeling sorry for myself. After a few months of this, I decided I was done with regret. If I was going to cry, it was going to be tears of joy for things this little girl was going to accomplish. I’m not saying this is easy. I’m not saying this keeps me from doubting.

But by dwelling on the good, the joy that got chased away after she was born, it comes back.

There you have it. Some bits of advice from someone who has walked a similar path. I wish you and your new child lives that are “not typical” in all the best ways.

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