“It was the silence that told me,” reports one young mother. “We were in the delivery room in the final stage. My husband was holding me and I was pushing and everyone was so excited because the baby was crowning. And then I pushed him out and suddenly everyone was quiet.” Then the nurses whisked the baby to the other side of the room and everyone was swinging into some kind of action and I was asking, What’s wrong? What’s wrong? And finally my husband came over to me with tears in his eyes and kissed me and said, “Honey, the baby looks wrong and they’re trying to figure it out but it’s going to be okay,” And it has been okay but it sure wasn’t what we had in mind.”

In the dreamy time of pregnancy, everyone wants to think that their baby will be normal, healthy, and beautiful. Ok. At least normal and healthy.  But with the birth of their child, 1 in 28 new parents find themselves suddenly thrust into a club they never wanted to join. They are now among the thousands of parents who have a special needs child. Whether the problem is a physical handicap, a developmental disability or a chronic illness, few new parents are prepared to deal with the immediate practical decisions coupled with the equally immediate emotional upheaval that goes with the news that a baby isn’t what they expected.

If you are a new parent of a special needs baby, please understand that it is normal to feel the full range of emotions for a very long time. Often there are strong and contradictory feelings. The grief over the loss of the baby you didn’t get may vie with feelings of protection and tenderness for the baby that is here. It is normal to wonder: Why me? Why us?  It’s normal to feel overwhelmed by all the decisions that you are suddenly going to have to make. It is normal to want the world to stop for awhile so that you can get your breath and figure out just how you are going to manage. It’s normal to be angry and sad. If you feel like you are on an emotional roller coaster, it’s only the truth. You are not sick. You are not inadequate. You are quite normally overwhelmed.

We manage grief in individual ways:

Recognize that grief is highly individual. For those with special children, it is a recurring state. Even though you will adapt, even though you will find moments of joy and days in which you can be glad to be the parent of your own child, grief will sneak up on you now and then. It’s important to know this in advance so that you don’t feel like there is something wrong with you whenever you feel renewed sadness despite successes.

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 personally 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. Sometimes parents turn their feelings of grief in on themselves and feel shame, guilt, and self-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 focussed 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 some 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.