Persever8ing…about grief

There are so many things we have to teach our children with autism that it seems we really only have time and energy to cover the essential topics. Issues as “heavy” as death and grief are not on the top of our lists until they have to be. Grief is a very personal thing and we all deal with it in different ways. Talking to anyone about it can be difficult, let alone a child or young adult on the spectrum.

My father died somewhat unexpectedly earlier this month. Fortunately, I was with him and my family in California when he passed away. Unfortunately, this meant that I wasn’t home to help my son with ASD deal with the death of his grandfather. My son usually doesn’t want to talk about anything but superficial matters, so it was very unclear to me what was going through his mind when we spoke on the phone in the days following my father’s death.

After my father’s passing, my mother suggested I take my son one of his grandfather’s Disney jackets or sweatshirts because my dad and my son shared a love of all things Disney. I chose something and took it home with me, although I had no illusions about my son actually wearing it. My son has a few “rules” about clothes: no logos, silkscreened images or embroidered pictures are allowed. When he was younger, I think this was a sensory issue. Now that he’s a young adult, I think it’s become a habit more than anything else. The sweatshirt I brought back from California has an embroidered “Grumpy” (from Snow White) on the front and back, so it breaks all the rules. When I gave my son the sweatshirt, his only comment was, “won’t people get the wrong idea about me and think I have a grumpy personality?” I assured him that he was not required to wear it and that it would be ok if he just put it in his closet and think about his grandfather when he saw it in there.

I guess I don’t know my son as well as I thought, because he’s been wearing the jacket nonstop since I gave it to him. I think it‘s his way of letting me know that not only is he thinking about his grandfather, but that he’s sad, too. We may not be talking about our grief directly, but it’s “out there”. In my work with people with autism, I’ve found that those who have difficulty expressing their feelings (about difficult subjects) communicate better when they can write things down. Many individuals who struggle to talk about most any topic can be quite eloquent when they put pen to paper. A great resource for starting this process is Catherine Faherty’s fabulous book, Understanding Death and Illness and What They Teach Us About Life. It is specifically for people on the spectrum and I highly recommend it. It covers just about everything relating to grief and illness in short story form; a “communication form” follows each topic so that the person with ASD can write their thoughts about the topic. At the end of each form, the person completing it has the opportunity to say what’s on their mind and/or ask questions. Going over this information with a loved one can lead to further “conversations,” both spoken and written.

Subjects in the book that are difficult to discuss but may be easier to write about include:

  • What if a person feels uncomfortable about visiting someone who is dying?
  • How do people react when someone they know is dying?
  • What does it mean when people say it is time to “let him or her go”?
  • What are some examples of the things that people may want to communicate before someone dies?
  • Do doctors put people “to sleep” in the same way as veterinarians put animals “to sleep”?
  • What happens to the body after dying?
  • What do people say after someone has died?
  • Why do people visit the grave, shrine, or keep the cremains of someone who has died?”
  • How can people continue to have a relationship with someone who has died?
  • How long will the grieving process last?
  • Why do people say the grieving “comes in waves”?

These are all hard questions. Using a book such as this may not touch on all the questions a person with ASD has, but it can open a dialogue. As my family continues to grieve my father’s passing, I’m going to leave the book in a place where my son will see it and see where the journey takes us.

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