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Here's my growing collection of resources related to death. Autism-specific information: See separate post for an "Ask the experts" column about death from the Carol Gray website. The page was removed from the website, but I grabbed it from Google's buffer. http://www.lindahodgdon.com/newsletters.html - See archived newsletter October 2007. This is a similar suggestion to Carol Gray's, involving creating a book/journal. http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=528&a=15957 - "Death, bereavement and autism" from the National Autistic Society. http://www.thegraycenter.org/store/index.cfm?fuseaction=page .display&page_id=62 - Introduction from the book "Gray's Guide to Loss, Learning, and Children with ASD" (Spring, 2003 of the Jenison Autism Journal) which can be ordered at the same website. Other articles (not autism specific). http://www.cwla.org/voice/0711grieve.htm - from Children's Voice, 11-12/2007 http://www.babycenter.com/0_questions-about-death-what-grade -schoolers-ask-what-parents_67892.bc - This is written for parents of NT gradeschoolers, but it provides good short "scripts" for answering questions kids have about death. http://www.babycenter.com/0_how-to-talk-to-your-grade-school er-about-death_67896.bc How to talk to your (NT) grade-schooler about death. Scroll down for related items on younger children. Since kids with autism are developmentally delayed, advice for younger NT children can be useful. http://hipmama.meetup.com/281/boards/thread/4345278 - Part 1 of a Parents Magazine article called "Saying Good-bye" by Barbara F. Meltz, published in July 2001. http://www.starsforeverinc.com/helpingkids.htm - Part 2 of the above article from Parents Magazine. http://www.kidspeace.org/uploadedFiles/grief[1].pdf - "A time to grieve, a time to grow" from KidsPeace/Healing magazine. http://www.kidspeace.org/healing.aspx?id=144&ekmensel=77 931891_28_38_144_1 - Healing magazine's Spring 2009 issue focuses children and loss, fear and trauma, sanctuary and brain function during grief. It should be available at this website shortly.
Social Stories: http://www.polyxo.com/socialstories/ss0014.html - about death http://www.frsd.k12.nj.us/autistic/Social%20Stories/Pages/wh at_is_a_wake.htm - what is a wake. http://www.thepartnership-yh.org.uk/secureFileSystem/temp/QC BDTBAA_MHEBPKFBIBCMPGJKAKJEACAH/Social%20Stories%20-%20Leeds .doc - talking about death and killing people (scroll down to about halfway through the document). Autism & PDD: Intermediate Social Skills Lessons - Special Events & Activities - click on "more samples" to get a social story about a pet dying. http://www.ccsd.edu/files/filesystem/Death.pdf - illustrated social story on death, explaining about grief and compares a dead body to a glove without a hand inside. http://leechbabe.files.wordpress.com/2008/08/visiting-grandd ad-in-the-hospital.pdf - not about death, but about visiting a grandpa at the cancer hospital, with illustrations. Thanks to our member leechbabe for this one. http://leechbabe.wordpress.com/2008/11/11/today-3/ - a very short social story about the death of granddad. Thanks and condolences to our member leechbabe. Books: http://www.autism-pdd.net/forum/forum_posts.asp?TID=23757&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=death - topic on our forum with book suggestions. http://www.amazon.com/Lifetimes-Bryan-Mellonie/dp/0553344021 /ref=sr_1_3?ie=UTF8&s=books&qid=1218638273&sr=8- 3 - a book I personally recommend (we've read the Norwegian version). It's called "Lifetimes: The beautiful way to explain death to children" by Bryan Mellonie and Robert Ingpen, also known as "Lifetimes: Beginnings and endings with lifetimes in between". Text on one page (max. 12 lines per page), and a beautiful illustration on the opposite page. Repetition of the concept of lifespan for various plants and creatures plus humans of course. Gets 4-1/2 stars from 21 Amazon customers. http://www.amazon.com/Understanding-Death-Illness-Teach-abou t/dp/1932565566/ref=pd_bbs_sr_2?ie=UTF8&s=books&qid= 1239000779&sr=8-2 - Catherine Faherty's book "Understanding Death and Illness and What They Teach about Life: An Interactive Guide for Individuals with Autism or Asperger's and their Loved Ones" Any other resources to add? Today I ran across a DVD called "What on earth do you do when someone dies?" by Trevor Romain. I've only seen the trailer and music video on youtube, so I can't give it any sort of endorsement but I thought I'd let you all know. http://www.youtube.com/watch?v=ej_aCMOhsT0&feature=relat ed - trailer http://www.youtube.com/watch?v=I7E6wj2Llhk&feature=relat ed - music video http://www.amazon.com/What-Earth-When-Someone-Dies/dp/B0007M 45HU/ref=pd_sim_d_3 - product on Amazon (rated 5 out of 5 stars by 3 reviewers). My 7 yr old's friend died of a seizure this summer. She was autistic like him. I had no clue of what to do but we did it. I followed his lead. He has "conversations" with her; it is his way of making sense of it. Yesterday she told him that he could eat all of the ice cream she wanted in heaven and not get fat and there is no school in heaven. That made him like heaven and not feel so sorry for her:)Cecelia Mom to Emily, 9, and Nick, 7 What a sad, sad thing to happen, nick's mom. Thank you for sharing your experience. It just goes to show that talking to someone who's not there is not necessarily a bad thing. Thanks for the resources. My ex's uncle is in poor health. The hospital said his body is shutting down. I think they will lose him soon. My son is very close to him because my ex lives with his Uncle and my son goes there for visitation. Keith has attended funerals before but never with someone he feels this close too. Thanks again. What the heck, I'll bump this one too. I just popped in to add these to the list: http://www.babycenter.com/0_questions-about-death-what-grade -schoolers-ask-what-parents_67892.bc - This is written for parents of NT gradeschoolers, but it provides good short "scripts" for answering questions kids have about death. http://www.babycenter.com/0_how-to-talk-to-your-grade-school er-about-death_67896.bc How to talk to your (NT) grade-schooler about death. Scroll down for related items on younger children. Since kids with autism are developmentally delayed, advice for younger NT children can be useful. The Gray Center had an "ask the experts" section with a question on death. Unfortunately, the page was removed but I located the text on Google's buffer. Here it is. I added paragraph breaks to make it easier to read on screen:
Question No. 12 - One question which has been asked frequently regards explaining death and dying to children with autistic spectrum disorders. The answer, of course, is extremely personal, depending on the family situation (including the cause of death and the circumstances surrounding it), religious background, ability of the child to understand, etc. However, Carol Gray has written the following response to aid in the area of dealing with a terminal illness (in this case, the impending death of a great grandma). The response can also be adapted to fit a situation where a loved one has passed away unexpectedly: Answer: A child will experience many changes as a result of a terminal illness. Since I do not know you, your family, or your child personally, I hesitate to write a Social Story for you, as it would be similar to me making a pair of shoes for all the members of your family with the information I currently have about them. So, I am going to “brainstorm” on paper for you, and I would like you to view it as a personal “shoe store” so to speak: I don’t want or expect you to cheer at every idea, but I hope I can suggest a few ideas that strike you as a good “fit”. Recently, I consulted with a professional who was working on behalf of a mother who was terminally ill, who needed ideas to explain her own passing to her two young boys with autism. Here’s what the two of us came up with: Create one/two memory boxes. In an effort to provide both parties with some control over the situation, encourage them to write letters or create memory boxes. If she is able and willing, Grandma can write and reflect or dictate to others her thoughts about your child, and perhaps use photographs to help recall those special times. These can be short letters delivered to your child by you when you return home. You can also deliver to her short letters that your child writes. When you are out of town, perhaps your child’s caregiver can work with him to add to a box where he collects photos, thoughts, videos, etc. of his experiences with Great Grandma. This doesn’t have to take a large amount of time, in fact, the opposite. Then, when you return, you can share a few thoughts about your visit, and your child has an important reciprocal role, to share what he has added to Great Grandma’s great memories box. I know Grandma is still alive, but the box can begin an important transition. Recalling important times is important for all people – which is why photo albums are so important. Keep in mind the memory box or scrapbook does not need to be presented in the light that Great Grandma may pass away; only that you are going to visit her to help her, and he can help you and the family feel better by collecting wonderful thoughts at home. A Social Story could describe the project to your child and its importance. I’ve written a sample Story for you: My name is Kyle. Lately, Mom has been going to New York to help Great Grandma. She will visit with her and help her in many ways. This is a list of things my mom did the last time she went to help Great Grandma: ....[include a list] It’s important to help people in my family when they are feeling bad or sad. By looking at the calendar in this story, I can tell that mom will be gone for three days, beginning in the morning on Saturday. She is planning to return home in a plane on Sunday. Mom says that I may help, too. When mom is gone helping Great Grandma, I can help, too. I can try to collect pictures or things that we do with Great Grandma. I may have some things that I remember and can write (or record, or dictate). Thinking nice things about Great Grandma can help everyone. The box or scrapbook that is developed before the funeral, can be added to after the funeral. Also, if Grandma is able to write a letter to your child when you visit, this can start the brief discussion of your visit that I mentioned earlier, and placed in the memory box/scrapbook. Dr. Tony Attwood has shared that a child with autism may not experience the same emotions as the rest of the family, and that’s okay. Depending upon several factors, your child may emotionally process the loss of Great Grandma differently than you or others in your family. That may mean that he seems less, or more, upset than everyone else. At the extremes, for some children the passing of a family member may result in minimal expression of feelings and a factual explanation. With some children, my experience has been that death is the “ultimate change”, not solely the loss of a loved one, but much more. The point that Tony makes, if I am speaking for him accurately, is that it’s best to follow the child’s lead on this one, versus trying to prepare him for a traditional emotional response that he may not experience or understand. What makes this so difficult for the adults involved is the emotional status of the rest of the family at this time. Stop by a bookstore, and comb the shelves of the children’s section. There are many new children’s books about death and dying, and critical illness. Read the books and choose one or two that best meets the defining criteria of a Social Story. One title I am familiar with is the following: I Don't Have an Uncle Phil Anymore : A story about death, grieving, and cherishing, written especially for children by Marjorie White Pellegrino, Christine Kempf (Illustrator) -(This book is available through www.amazon.com). Consider using visual strategies to help your child 1) identify his feelings, 2) ask questions, and 3) process his feelings/questions/thoughts/concerns. In Tony Attwood’s book, Asperger’s Syndrome: A Guide for Parents and Professionals he provides some ideas for translating emotional information into something tangible the child can relate to, and use to express ideas. Comic Strip Conversations may also be helpful. A Social Story can help you to describe how your family’s faith helps you with Great Grandma’s passing. Carol concludes with the following advice for parents dealing with the death of a loved one: make sure that you take care of yourself during this time as well. Give yourself permission to make a few mistakes (and that’s always applicable!) **More great information is available in "Gray's Guide to Loss" (http://www.thegraycenter.org/cgguidetoloss.cfm) Original link (no longer available): http://www.thegraycenter.org/askexpertsresults.cfm?id=12
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