One of my dear friends lost her mother to a long, painful battle with cancer this week. My friend has a nephew with Autism. When I asked if there was anything I could do to help the family, my friend asked for assistance helping to find someone to keep an eye on her nephew during the service. He and his family will be traveling from out of town. My sweet and thoughtful friend wants her brother and sister-in-law to be able to focus on the service even if their son feels the need to get up and explore, pace or simply move around. My mom, who has a background in Special Education, and I both offered to be at-the-ready to assist, in addition to two other of their family friends to help make sure the boy is safe, comfortable and happy. We were happy she had the foresight to ask for help. I also offered to prepare a social story about the services (both at the church and the cemetery) so that my friend’s nephew will have a better idea of what to expect on Friday.
Death is inevitability. We all must say goodbye to cherished loved ones. But, parents raising children with Autism may not be able to fully “attend” a service for a deceased loved one if they’re distracted by chasing a busy child around the church, funeral home or cemetery. Sometimes not being able to say “goodbye” properly can make it more difficult to grieve. Yet understandably, many parents want their children to be present, even if they’re unable to stay with the rest of the family for the whole service. This is where friends, teachers, therapists and neighbors who know the child (or those who understand children with Autism Spectrum Disorders - especially if the service is out of town) can step in to help.
If you know a family raising a child with ASD and you hear that they lost a loved one – please take some time to lend a hand! You can offer to help during the service(s); dependent upon the age of the child and the parents’ preferences, they may or may not want him/her to attend the services. If not, offer to stay with the child in a place he/she is familiar and happy (his/her home, therapy clinic, family member's home, etc.) If the parents want the child to attend, you can also offer to help by writing a brief story to help prepare the child for a day filled with unusual, unexpected and hard-to-understand events (and emotions).
Basically, the main goal of writing a social story for any child who will be attending the funeral of a loved one is to help him/her understand why he/she is in a different place (like not at school or therapy or in a different church and/or a cemetery) and what is expected (and/or allowed/not allowed). By preparing the child in advance (and reading the story several times in the day or two before the service) chances are the family will be more able and more likely to be able to stay involved in the important service.
Obtain details about the place(s) where the service(s) will be held and include details about the structure of the day if you can (like church service first, ride in the car with the family to the cemetery, cemetery service, ride in the car and go to Grandma’s house…) If the parents want the child to start out sitting with the family in the service but allow him/her to get up and leave as necessary (with trusted helpers), tailor the wording of the story to fit their wishes so the child knows what to expect. Here’s what I wrote for this section of my friend’s nephew’s social story, based on his parents’ wishes: “At [the church], my family and I are going to sit together and listen to special memories about Grandma. My Mom and Dad want to listen carefully to all the special words, songs and prayers during the funeral. I can listen, too. But if I don’t feel like listening closely, I can read a book quietly. I can keep my hands and feet calm while I listen or read.” I then wrote a little about the family friends who have offered to help so that he will know we are friends of his parents (not strangers).
I also included a recent photo of his recently deceased Grandmother (because images can be very important for children with ASD) and used the phrasing his parents have used with him to explain where Grandma has gone (to “live with Jesus in Heaven”). You may want to include a tidbit about people crying and that it is OK to cry and that “Everyone cries sometimes.” I also wanted to suggest what the boy can do if he/she wants to “do” something about the crying: “When someone I love cries, I can gently hold their hand to help them feel better. After the special words, songs and prayers are done, I can give the people I love a hug, too.” The story ended with some reassurance: “Grandma and Jesus love me and my family very much.”
My heart goes out to my friends; while I continue to pray that God comforts them during this difficult time, I have certainly rested a little easier knowing that I was actually able to “do” something to help them during this time of sadness. The woman they lost was a generous, kind mother and grandmother; I hold many fond memories of her. She was amazing with all of her grandchildren, but especially her grandson with ASD. She will be missed – may she Rest In Peace.
Another suggestion: if the child is on a special diet (like GFCF) and you know how to prepare safe meals, offer to bring some food. While many people want to help families raising children with ASD, they may not always know how to prepare a special meal that would be safe for the child…if you can, I’m certain it would be a huge help to the family (especially on the day of the service). Just make sure to ask what kinds of foods the child tolerates well (and likes/dislikes) before you put a meal together.
What else can you think of? What are some additional ways to offer support for families experiencing the loss of a loved one?
Leigh Attaway Wilcox is a writer and editor for the projectLD family of companies. Leigh is Assistant Editor of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007. Leigh lives in North Texas with her husband and young son who loves reading, LEGOs, Mario Bros. and also happens to live with Asperger's Syndrome, an Autism Spectrum Disorder.