By Patience Domowski, LCSW
When you find out you’re having a baby, you are usually scared and excited all at once! Whether the baby is expected or not it’s scary but exciting to become a new mom/dad. You start to think about what that child will be like as a baby, growing up, and even what their future might be like when they are an adult. Sometimes you really want a girl or a boy but often people say “I don’t care if it’s a boy or a girl, I just want it to be healthy!” Sometimes they are lying- they secretly want a boy. Or a girl. But usually they really do mean they want the baby to be healthy. No one wants an unhealthy child. But what if the child is “unhealthy”? What if the child is not “normal”? Then what?
Often parents don’t find out their child has special needs until months or year after he or she is born. Sometimes parents find out while pregnant, however, such as if the baby’s condition shows up on a test or ultrasound. Sometime parents find out when the baby is born with some defect right away. Whenever you find out about a “difference” about your child you were probably not expecting it. Whether you find out there is something “different” about your child sooner rather than later, it’s still usually surprising, and often devastating. New parents aren’t expecting any problems usually, and when they find out their precious new baby is going to not be healthy or normal, they are usually very disappointed. Which makes sense, considering it’s not the ideal and it’s usually quite unexpected.
However, many people might not expect to go through all the stages of grief and loss like you would if you lost a baby to miscarriage or stillbirth, or infant due to SIDS, etc, however often the reactions and feelings are quite similar to someone’s who lost a child. Parents might be shocked and confused why they are feeling such loss when their baby didn’t pass away, and they might feel bad knowing other people have lost their children but they at least have one even if the child has special needs. You might feel guilty because you know you love your child, yet by being upset about their condition you feel like you are denying him/her to an extent. Parents go through grief because the loss is not of a child, but of an expectation. They feel their child may never live up to the parent’s expectation of their potential that they had hoped for, and that is why they must grieve. Grieving is important, so we can get to Acceptance and Hope.
The Kubler-Ross stages of grief and loss, so often noted for bereavement, can be applied to this situation as well. The stages include Denial and Isolation, Anger, Bargaining, Depression, and finally Acceptance. Often parents don’t believe the child’s condition- whether it be mental health, cognitive, developmental delays, medical fragility, sickness, deformity, genetic conditions, etc to be real at first. They might want to see several doctors, they might try to get all the information they can online or from specialists to try to explain it away or find a way to change the situation. Parents often isolate themselves, feeling no one understands my child or what I’m going through, or it’s too hard to explain why my child looks or acts different. They might feel shame that their baby is not “beautiful” in the expected ways of the world or that their child is not “normal”. Parents might feel jealous and upset seeing everyone else’s “perfect” children and so keep themselves isolated so as not to feel that way by seeing other babies. Often parents will be angry- perhaps at God- why did you do this to me?, to my baby? Or at the doctors- why didn’t they tell me? Or why didn’t they do anything? Or even at themselves- I should’ve taken more prenatal vitamins, I shouldn’t’ve rode that roller coaster while pregnant, etc.
The Bargaining stage might look like parents going after every kind of intervention and help their child can get such as taking the child to every doctor, specialist, early interventionist, treatment clinic, etc to try to make whatever is “abnormal” about the child go away.
Parents are often grieving which can cause some depression, and postpartum depression can play into this as well, and when they feel they should NOT be grieving, or that they are “bad parents” in some way, or blame themselves for situation, it just causes depression to worsen.
What we want is to get to Acceptance. And Hope. Whether child lives or dies, is healthy or unhealthy, is not up to the parents for most part. Parents can, and should, get as much help as possible for themselves such as mental health therapy, support groups, reaching out to family and friends. Parents should get help for their child as well such as Doctors, Early intervention, etc. too, however it’s important to not worry so much about getting that child to “normal” in comparison to peers, but rather to get that child to be as healthy or as functional as possible for him or her. Develop a “New Normal” or Adapted Expectations. What that will be for your baby will vary greatly from child to child. Everyone is different and everyone develops in their own pace. Some people develop faster and further than others. Children, especially babies, have so many milestones to reach, but instead of focusing on what they “should” be doing or what their peers are doing, if you have a special needs baby, just focus on being happy that you have that child, that you were blessed with someone who needs some extra love and help from you, and embrace the special needs parents identity and community that comes along with it. You will find that you will feel less grief and depression, but rather much hope and acceptance, and even get to the point where you will celebrate difference perhaps. Your child will be happier for it, and you will too.
[this article was written for MainLineDoulas. Patience provides some postpartum doula services through Main Line Doulas]