This Month's Parent Support Group: Grief

           At this month’s parent support group at the St. Gerard House, the topic will be grief and acceptance. I have invited a guest speaker, psychiatric nurse Anne Robinette, to join the group and share her knowledge about working through the grieving process and coping with the array of emotions which parents of children on the spectrum experience after a diagnosis. The main reason I decided on having grief as a discussion topic for the group is because I personally have struggled many times with my son’s autism diagnosis. There will be long periods of time where I feel fine---I have three healthy beautiful children and I am grateful. Danny’s autism feels like a minor flaw in the fabric of my family’s happy life. Then something will happen. Someone will make a thoughtless comment. Or, Danny will have a particularly bad day full of tantrums and odd behavior. His birthdays are particularly hard for me as they are a reminder of how the time Danny and I so desperately need to get him developmentally closer to his typical peers is slipping away. These things seem to take my breath away. I feel like I’m starting the grieving process all over and that I’ll never fully accept Danny’s diagnosis.

            After a little bit of googling, one model of the stages of grief that came up the most was the Kubler-Ross model of grief.  This model had five stages: Denial, Anger, Bargaining, Depression and Acceptance. I know that I have personally experienced all of these stages at one time or another in the three years since Danny’s diagnosis. At first, when his pediatrician mentioned the dread “A” word to me, I thought it was impossible. Danny occasionally made eye contact, he didn’t spend hours a day lining up his toys and so what if he wasn’t talking yet? He’d talk eventually. I refused to see what was in front of me for several months and I still kick myself for it. I still feel denial. I look at my son and think that it is impossible that he has autism. Maybe it was something else, some strange temporary glitch and he’ll wake up the next morning talking and laughing. Deep in my heart, though, I know that it is highly unlikely that this is the case.

I tend to linger in the anger stage. I get mad at myself for past decisions I’ve made concerning his treatment. I get mad at my family for not being as understanding as I think they should be. I get angry at people who stare in the grocery store. I get angry at people whose families have never been touched by autism. I get angry at God for giving me what sometimes feels like an impossible task. I get mad at Danny for being difficult or ill-tempered even though I know he can’t help it. I just get mad and stay mad. I don’t feel like I’ve done much bargaining because, honestly, I don’t have much to bargain with. I do remember, though, during those first long nights after his diagnosis lying in my bed wordlessly repeating a prayer of “Please, God, please, God, please God” until I finally fell asleep.

Depression is another old acquaintance who calls me up and tells me that I can’t do this, I can’t possibly raise this child, that my marriage can’t survive autism, that my other typical children will always be overshadowed by their brother’s autism, that everyone thinks I’m a terrible mother. While my anger energizes me and pushes me to find other ways to help my child and spread autism acceptance, the depression completely saps me. I want to stay in bed and pretend that autism is something that happens to other people’s children. Acceptance is also something I struggle with often. Of course I accept my son and I accept this journey that we have been placed on together. I also accept the huge impact that autism will have on my family. But sometimes, I get tired of accepting things. I don’t want to accept all the missed milestones. I don’t want to accept that my son might not live independently. I don’t want to accept that he might not go to college or get married. I want him to have the same opportunities and dreams that I did. I want him to experience the kind of love that a mother, father, or brother cannot show him. I struggle with acceptance because it can feel like giving up.

            Right now, I am in a good place. Danny is doing remarkably well and I feel like a lot of the hard work that has been put in with him is paying off. I have some wonderful friends who share this rocky road of living with autism. The St. Gerard House has also been an amazing place of support and renewal for my family.  Today, I can look at Danny and see what a blessing he is. I am grateful for the ways the autism has molded me and how much it has taught me. But, I know, from past experience, that I may not stay in this place much longer. Something might throw me back into the spiral of denial, anger, bargaining, and depression. I want to learn how to cope with all these and quickly find my way back to this good place. Hopefully, we can all share with each other how we get through our differing stages of grief and find joy in our crazy lives.

-Alicia Westbrook