Wednesday, July 4, 2012

Stage Fright

The Parent’s of Autism group recently welcomed guest speaker Jennifer Moyano, from the Oklahoma Autism Network (OAN), at our monthly meeting. Moyano was a great help by providing resources, information, tips, and literature to our group on all sorts of subjects including state and federal financial assistance for families affected by autism. I’ll probably hit on several of the things Jennifer spoke about in the next couple weeks. This week I want to share something she talked about known as the Feeling States of Grieving.

These are steps that all parents go through when they find out their child’s diagnosis. These are analyzed by Dr. Ken Moses, a nationally recognized psychologist and father of a special needs child. Some of these I have talked about in the past, but some I didn’t realize until she brought them up. I feel like I should share these since they do seem to be common.

According to “Dr. Moses is a psychologist who has devoted himself to helping people deal with crisis, trauma and loss. He is a nationally renowned speaker, author, and clinician who has focused much of his work on parents of impaired children and disabled adults. He has faced deaths, life threatening illness, disabilities, and other major traumas in his own family and life. He continues to help people sort out their lives after experiencing loss and struggles with the same issues himself. Currently, he maintains a private practice limited to the issues of grieving, and directs Resource Networks, inc. an organization specializing in the production of workshops, seminars, consultation and materials that deal with issues of human growth in the shadow of loss.”

Denial is the first state that he talks about. This is one that most of us are familiar with. This is because we all tend to go through this. Moyano said that the father tends to go through this more than the mother. I would have to agree with that. I rack this one up to mother’s intuition. It seems that the mother has an idea to begin with that there is something wrong. The father though usually has such an idea about what his child is supposed to be like thanks to world views that he doesn’t even trust the trained professionals.

According to a handout produced by the OAN, this: “Serves the purpose of allowing you to ‘buy time’ while you muster resources.” This is a great way to look at it. When you find out you don’t want to be left in the dark. You don’t want your child to have something that you know nothing about. So while you begin to gather information it is just easier to say it’s not true.

This is not just the father though. Mothers too go into denial stage, and many grandparents refuse to see the issue as well.

Anxiety is the next state. This: “Provides the mobilizing energy needed to make changes.” The example given was that this is the stage where we stay up late do all the research that we can handle. We’re online looking up information, reading books, and finding resources. I think we’ve all been there.

Fear is the next state. This: “Provides the balance of reality.” We as parents fear many things. What can I do to help my child? What if I do the wrong things? What’s going to happen to my child if something happens to me? Etc.

Guilt is the next state. This: “Explains the unexplainable.” This seems to be more of mom thing, although dads do it too. This is when you ask what happened. Did I do something during pregnancy that caused this? If I had not had that flu shot would it be different? Did I drink something I wasn’t supposed to? Did I eat too much fish? Etc.

Depression is the next state. This: “Helps to redefine what it means to be capable and competent.” This seems a little different than what you might think. This is where you decide that things are okay as long as your child is okay. Moyano’s example was, if your child will only eat Fruit Loops it’s okay as long as your child is eating. This is something we’ve struggled with in Konner’s case several times. He would only eat Lunchables for lunch. We feel like this is okay as long as he’s eating. He has expanded his taste buds in recent years, but is still a picky eater.

The final state is Anger. This: “Clears the way to getting on with the task at hand.” At this point you’ve gone through the other stages and you are “revved up and ready to go.” You may be angry that this has happened, or at the people who did not believe you, the things you have to face, but you are ready to face them.

OAN suggests that you share information with your family and friends. This will help them understand what it’s going to take to help your child. You should also recognize that others (spouses, siblings, grandparents) are also grieving, but may be at a different stage than you. You have to keep that in mind, and be prepared to help them when they move to the next state. Seek out support from others. This is where the Parents of Autism group helps.

I think most, if not all parents, have felt these states when dealing with their autistic child. I think it’s nice sometimes to know that you are not alone in how you deal with your feelings though.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

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