It's hardest when your child is very young and you're still struggling to accept that he has special needs. So much about the future is unknown, although you've heard every single grim risk of his condition or disease. You wish doctors would just tell you what your child will be like, but they can't say for sure. You want to have hope, and you do, but sometimes worry and despair overpower it and you fear the worst.
As your child progresses you do, too. The worry feels less like a tsunami and more like an undercurrent. You quit looking at your child and wondering what's wrong and you start celebrating what's right. You accept. Sometimes, though, you accept too much and forget that there is still so much potential, and that you should never stop hoping.
Here's how to always have that hope, whatever your child's age:
• Toss the child development books. Unsubscribe to any of the "This is what your baby/child is doing now!" online updates you registered for before you knew your child was going to have special needs. They will only make you compare your child's progress to what is typical, and that will only make you despair. Your child is on his own timeline, and nobody else's. Put that on a Post-it and hang it on your bathroom mirror.
• Look at what your child is doing today. Of course you want him to walk, talk, ride a bike, eat by himself, sing, and do any number of other things. But relishing and appreciating the stuff your child is able to do in the here and now will give you more confidence in his future. Contentment breeds hope; worry breeds more worry.
• If the worry is ever-present, if it makes you cry a lot and keeps you up at night, get help. Find a support group, or see a therapist. Carve out time for taking care of you, because you need to be happy and hopeful—and your child needs to feel that happiness and hope of yours.
• Rethink your idea of "accomplishment." It doesn't need to mean the ultimate goal you have for a child—say, walking. An accomplishment can be your child learning to grasp the handlebars of a walker. And taking a first step in that walker. And taking a step holding your hand. Each and every thing can be A Big Deal, if you make it one. Screech "Wheeeeeeee!" Email friends and family! Alert the press! Your hopes will be buoyed and you will not be sitting around thinking, "Why isn't he walking yet?" Because in your mind, your child is well on his way there.
• You know that old fable about the rabbit and the hare, and how the slow-and-steady hare won the race? Now forget that old fable. THERE IS NO RACE. See above, "Your child is on his own timeline."
• Surround your child with positive doctors and therapists. Regularly ask them to share the great stuff he is doing, ditto for his teachers. Keep a list handy for insta-inspiration.
• When you see friends, family and neighbors you haven't seen in a while, about the progress they see in your child; you'll hear about stuff you probably hadn't even noticed.
• The next time you are freaked that your child isn't progressing, go look at photos of him from a year or two ago, think back to what he was doing at the time, and consider how far he has come. Also: Call up your wisest, most reassuring friend and have lunch or dinner, ideally with wine involved.
• Enjoy your child. The more you do, the quicker the grief will pass—and the more your hopes will be buoyed. Find activities you both like (and remember, not every single thing has to be therapeutic). Take lots of photos. Be silly. Cuddle. Kiss. Try so hard to quit peering into the future, and look at the beautiful child in front of your eyes.
This is one of a series of posts sponsored by CVS Caremark All Kids Can, a more than $25 million commitment to making life better for children with disabilities. "Like" them on Facebook—they deserve it.
