An autism mom and child psychiatrist shares her journey through grief and accepting her son’s autism diagnosis.
My name is Lorerky Ramirez-Moya. I’m 44 years old and a mom of a happy, loving, and very brave 11-year-old autistic boy. I’m also a child psychiatrist and my job includes medication management for children and adults with developmental disabilities like autism.
I’d like to share what I know about the grieving process a parent goes through when a child is diagnosed with autism. It is unique. My knowledge is gained from personal experience and from stories of families I know.
My husband and I live in Northern California with our son and our seven-year-old daughter. She loves her big brother and is a great advocate for him. We are a close-knit family—we do things differently than other families but we have learned to have joy.
I come from a small country in Central America. In Costa Rica (the size of West Virginia) you can drive to the hot Pacific coast beaches and you can drive to the cool, foggy mountains all in one day.
There’s a video clip taken in Spain that shows a couple who plans a vacation to the beach and ends up in the mountains. These are both beautiful places, but they are quite different in climate, and the couple does not have the warm clothes or shoes they need and they are not familiar with the area. They also do not have a map.
This is my story of when I ended up in the mountains. There were times that were so strenuous it would be impossible to capture in words. My journey also included some of the most beautiful mountain peaks I’ve ever seen. There’s so much more left of this journey, but now I am prepared.
My son was diagnosed with autism at two years old. Most of my grief was consistent with the Kübler-Ross model—denial followed by anger, bargaining, depression, and acceptance. However, because of my medical background and training in observing patients, denial and bargaining were short and quickly overrun with scientific thinking.
I learned that the process of grieving would not just happen then, it would happen throughout our lives, as my son grew and new milestones were expected. What I did not understand early on was that, as my son got older, I would become stronger and more resilient and so would my family. We would be able to handle the situation better and go through the process faster.
There are several hurtful things that people can say in response to an invisible disability. These, in turn, can make the grieving process harder. There’s the friend who tells you that nothing is wrong with your child (after he has been diagnosed), and there’s the person who says: “You are the right person to have this child.” Really? Why not you? And then there are those who offer suggestions: “Try to be more consistent with his sleep.” “Maybe a healthier diet?” “Pray more and your child will be healed.”
We learn from these experiences that sometimes the best thing to say is nothing at all, especially when a person is not sure what stage their grieving friend may be in.
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Finding peace with diagnosis
I read a book during the time I was feeling angry. When Bad Things Happen to Good People, by Harold S. Kushner, put meaning to the suffering that humans endure. It allowed me to feel more at peace with the diagnosis. It helped to transition my feelings into the bargaining stage.
When the tears came, it felt like a flood amidst the desert of New Mexico that we were living in. Sometimes one parent grieves alone because the other parent is still in denial. My husband and I were both grieving and we would wait for our son to go to bed so we could both cry. Then we developed an agreement where one of us would cry at night and the other person had the obligation to support them. Our system worked.
We know there is a high rate of divorce among parents of autistic children. In my experience, the more in tune the couple can be with each other’s feelings, the more successful they will be at getting through the hardest parts.
As a psychiatrist, I understood what was happening to me and knew that it would take a certain amount of time to get through the depression stage. But that didn’t make the pain any less. When I went to therapy appointments, they would ask what would be helpful. I would say to please just let me sit there and cry. I felt helpless, but with my training, I knew that sometimes you just have to wait.
I also realized that sometimes all I needed was someone sitting next to me, quietly. Just to know I wasn’t alone. In the beginning, you may not be open to hearing someone tell you how to deal with your circumstances. Take your time, take it day by day.
Once the acceptance stage starts to kick in, the energy to solve problems arrives. As adults, we feel that our way is the right way. What I have learned is that with autism, nobody is right. Things can go wrong so fast, even when you feel fully prepared. I tell parents to keep their minds open. The way they do something is not always the right way; their partner might resolve the problem in a different way.
In the acceptance stage you may be open to meeting people who are going through the same thing. We call it “the tribe.” If they survived, we can survive too. Right?
Seeing other parents who have gone through the same grief, it’s like a sisterhood, a brotherhood…they get it. They validate your emotions. They aren’t scared if your child is having a meltdown, instead they offer to help with your other child. Families with older children who are autistic can offer very wise advice.
When you do open up to share your story, you can be vulnerable at a time when you are still trying to heal. Relating to another family and finding that perfect match is not easy. You may feel that you are doing the same things as other families, so why is your child behind on potty training, language skills or motor skills? I have learned that it is about understanding where my child is with cognitive and neurological development and knowing that each child will move at their own rhythm.
You learn to love the small gifts your child bestows upon you. Little miracles happen in their journey, things you have both worked hard for, which you may otherwise have taken for granted. Things like sitting together as a family at the dinner table without a meltdown.
You start to abandon the pressure you’ve been carrying to fix your child and get him better faster. You are making your way out of the fog. Ending up in the mountains wasn’t my first challenge in life and it won’t be my last. But I can guarantee it will be my hardest.
As a doctor you go through protocols, but there’s no way to truly understand what your patient is going through. I have experienced how real mental illness can be, so I know how to talk to my patients. I can relate to their parents and the pain, fear and sadness they feel when their child is not well. And when it comes to helping people with developmental disabilities, well, that’s my everyday life.
I can thank my son, who has made me the doctor I am today.
This article was featured in Issue 125 – Unwrapping ABA Therapy