Every parent has hopes and dreams for their child. Maybe they’re big dreams, like seeing them graduate from college or simple ones, like chasing them around the park, playing catch or getting a video of their first steps. Like all parents, you probably hope and dream that your child will be healthy, happy and safe.
When your child has a disability or special health care needs, some of your dreams might look different than what you thought – or they might not come true at all. This can be very hard, frustrating and sad. Dealing with the loss of hopes and dreams is a lot like the grief process people go through when a loved one dies.
You might wonder if it’s even okay to feel that grief. After all, your child is still here and still needs your care. But grieving is something you can’t control. It’s a process that most parents just have to go through. Learning more about it will hopefully make it feel a little easier.
In her book, “On Death and Dying,” Dr. Elisabeth Kübler Ross describes people's different feelings as they work to accept a loss. Dr. Ken Moses explained that many parents with a child with a disability go through the same process in learning to accept their child’s disability. You might go from one feeling to the next or feel many things at once. Each feeling is an important part of the process of acceptance.
Read below about parents’ stages of grief, and learn more in this article from Parent Companion.
When parents hear a diagnosis for their child, their first reaction is usually, “That can’t be true.” This is denial.
Or denial might come before you get the diagnosis. You suspect something is going on, but you don’t want to believe that your child really has a disability. Or you don’t want to believe the disability is serious.
Denial is not always a bad thing. It can buy you time to get ready to deal with your child’s disability. Some parents say that when they’re in denial, they think only about what’s happening with their child today instead of every possibility for the future. In this way, denial lets you face just one need at a time instead of feeling overwhelmed with them all.
Sometimes denial can keep a parent from getting needed help for a child, but it doesn’t have to. You can be in denial and still get help.
It isn’t fair that any child has a disability or special health care needs. Anger is a very real part of grief. Sometimes there isn’t even anyone to be angry with, but you still feel so angry.
Anger can be helpful, too, because it might give you the energy to get better support for your child.
But anger is a hard stage to be in, and it’s not always easy to move on. Staying there too long can hurt your health and even your child’s well-being. If you feel stuck in anger, it might be time to talk to a friend or counselor.
Guilt is when we begin to blame ourselves for our child’s disability. You might start asking yourself questions: Could I have eaten a different food while pregnant? Should I have done more genetic testing? Did I hold my baby gently enough?
It isn’t your fault that your child has a disability, and you can’t change what is in the past. But you can find ways to change the impact of your child’s disability or special health care needs on their life. By working through guilt, you can move forward and focus on how to help your child.
This is where you feel the loss of your dreams for your child. There are lots of types of depression. Some people may feel sad. Others may feel depression so strongly that they lose energy and can’t get out of bed.
During this depression phase, you can really learn what you are capable of doing and what it means to be a strong person. If you find that you’re depressed for several weeks or feel stuck in it, you can ask a doctor or counselor for help.
We all have times when we fear for our children. Are they getting the care they need? What will their future look like?
The anxiety that comes from this fear might make our hearts race. Sometimes it stops us in our tracks and keeps us from doing anything.
But you can use fear and anxiety to move forward, too. Fear can bring one of three responses: fight, flight or freeze. A freeze reaction means you shut down or slow down. A flight reaction means you try to or do run away from things. Both of those reactions can give you time to build your strength. If you feel ready to fight instead, you can direct that strong energy into finding new ways to help and support your child.
While you are working through your stages of grief, you are also adapting to your new reality.
Texas Parent to Parent is a helpful organization for parents of children with disabilities and special health care needs. They have used the Four Stages of Adaptation described in the book “Nobody’s Perfect: Living and Growing with Children Who Have Special Needs” by Nancy B. Miller, Ph.D., M.S.W. to describe how many parents adapt to their child’s diagnosis. These stages are:
Sometimes, these phases take more time than you expect. Or they go in cycles – you loop back through them. You might be ready to start settling in, but then you learn more about your child’s disability and go back to surviving or searching. Maybe it takes extra time for your child to gain social or communication skills to separate.
We want you to know that each stage of grief and adaptation is a natural part of parenting a child with a disability or special health care needs.
Here are some things that other parents said were helpful during the grief process: