Accepting, Grieving, and Adapting to Life

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.

Feelings That Come With Grief

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.

Denial

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.

Anger

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

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.

Depression

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.

Fear and Anxiety

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.

Stages of Adaptation

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:

Surviving. When you first learn of your child’s disability, you might feel numb, afraid or in shock. You do only what you need to do to get through each day, like changing diapers or putting food on the table. Anything more is overwhelming. Survival sometimes feels like it will last forever. But sometimes, you can start to adapt just by putting one foot in front of the other.
Searching. This is when you want to get more control over your life. You want answers, and you want them right now. You might begin searching for new treatments or second opinions for your child. You might also search inside yourself to understand your new role as a parent of a child with a disability. This might spark big changes in your family’s life, like finding new friendships, jobs or schools. You can learn more on our My Child Has a Diagnosis. Where Do I Start? page.
Settling in. Here, you feel like you have a little breathing room and are coming to peace with your new reality. You can manage your child’s care and cope with the new things you’re learning along the way. You feel like you have a plan that works and start to get more balance in your life.
Separating. When you first get a diagnosis for your child, you’re in charge. You find the treatments, look for doctors and work with their school. But eventually, either your child might start doing more for themselves or someone else might start doing more for them. This will look different for every family. Some adult children might eventually move into their own home, maybe with other caretakers. Others might manage their own bank accounts or go to college. Separation doesn’t happen overnight. Gradually, your child learns skills to have more independence.

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.

Understanding Grief

Here are some things that other parents said were helpful during the grief process:

Even if you want to, you can’t force yourself through a phase. Each one takes time to experience. And each is an important part of the path to acceptance.
Having someone to talk to helps. You can connect with other parents who have gone through the same feelings or had a similar experience. Or you can try to talk to a trusted friend, spouse or counselor. Our Find Services, Groups, and Events section lets you search for other organizations that can help with many things.
Fathers might be less likely to notice that they are grieving or get support. But they go through the grief process too.
At any moment, you and your spouse might be at different points in the process. You may be searching while your spouse is still surviving. One of you might still be in denial, while the other is angry, guilty or depressed. This is hard on families, but you can work through things together by understanding that you are both grieving.
Siblings go through the grief process, too. You can see our Siblings page for ideas to support your other children.
You might go through the grief cycle more than once. As your child grows, you might learn new things about their disability. Usually, not every time is as intense as the first one.