Don’t let other people decide what you should feel or how you should deal. Some of us work through shock, disappointment, and pain by sharing and talking and looking for validation from others. Others turn only to their partner or a few trusted family members or friends. Still others need time alone or with their god. Still others move among all of these modes. It’s okay. This is a highly personal time. Usually people’s instincts about what they need to do to gather themselves for the challenges ahead are good.

You know best how quickly you can be ready to talk to others about how your world has changed. In the first few weeks after a birth, it is only usual for people to call and want to stop by to see the new baby. Some new parents feel it’s important to share what is happening. They find comfort in telling the story and receiving the concern of those who care about them. Others need a buffer between themselves and the larger world for awhile. In that case, it may be better to have a trusted friend call the people who matter to tell them what has happened and how they can help.

Resist the tendency to turn grief into blame. I’ve known parents who got obsessed with trying to figure out what they did or didn’t do during pregnancy that might have caused the problem. I’ve known people who have searched back through the generations to find the “bad genes.” I’ve known couples who have spent years accusing each other of not having done the right thing during the birth.

Although anger and blame may feel better than grief, ultimately it only causes more pain. It can distance you from your partner just when you most need each other. It can distract and immobilize you so that you can’t help your baby or make things generally better for your family. Parents are rarely to blame. Frustrating as it is, it may be impossible to determine exactly what did cause the problem. In the end, it’s an academic question and matters little in the day to day care.

Keep Your Priorities Straight

Your baby needs you. There may be relatives who will be offended that you don’t spend time talking with them or explaining things to them. There may be people you made promises to that you now can’t keep. There may be projects that will just have to be left undone. People who love you will understand. Let go of everyone else. Your energy needs to be focused on figuring out how to be a parent to your very special child. If there are other children in your family, you need to figure out how to balance everyone’s needs for love, attention, and care.

Do everything you can to stay connected with your partner. Parenting a special needs child puts enormous strain on even the best of marriages. Exhaustion, worry, financial strain, and the challenges of getting through every day can make it hard to remember to take time for yourself as a couple. Love each other. Comfort each other. Just be with each other.

Don’t Be Shy about Looking for Help

You weren’t prepared for this. Few of us are. There are counselors who specialize in working with families with special needs children. They know how to help us work through the sorrow, shoulder the challenges, push away the tendency for self-blame, and find meaning in this life we didn’t plan.