Tuesday, August 17, 2010

Where'd Papa Go?

First of all, I need to thank everyone for all of the kind comments, thoughts, and prayers offered up for my father.  I could never have imagined when I started blogging back in April that I would already be invested in the lives of so many wonderful women (and a few men too), and that I would find such a strong, supportive, and endlessly interesting and thought-provoking community out here in cyberspace.  I'm so happy and honored to have gotten to know you all.  And thanks to all of my old-technology friends as well (you know, the face-to-face kind) for all of their support through the years...I'm not done needing you yet.

And now I need to ask my fellow ASD parents...have any of you attempted to explain death to a child with autism?  Audrey is so literal that I feel there is no way that I could go the angels-pearly-gates-fluffy-clouds-in-heaven route.  I am such a lapsed Catholic that her only point of reference for an afterlife is me telling other drivers to go to hell, and thanking God in Heaven Above that my TiVo season pass manager was smart enough to record The Bachelorette - After the Final Rose based on the pass for The Bachelorette.  Many good and happy blessings upon you, Oh Divine Video Recorder. 

So far, it looks like it's working out that Audrey won't be attending the wake, funeral, or burial, which is definitely the least stressful route for me, but also excludes her from any involvement in the proceedings.  The most that I had considered her attending was the burial, because it will be private, outdoors, and short.  I wouldn't have to worry about her behavior because it would just be my immediate family in attendance.  And she loves to wander freely at cemeteries...running in circles, doing her happy-kicky dance, and pilfering all manner of pinwheels, flags, and plastic flowers along the way.

I can't imagine Audrey at the wake.  She has a thing about crawling into bed with the elderly and infirmed.  The first time that she saw a hospital bed, she said, "It's a crib!" and crawled right in, completely unfazed by how sickly and not-like-themselves the person looked or smelled.  Needless to say, they all loved it and thought that she was an earth angel for doing so.  I'm thinking of hiring her out to nursing homes to lift their spirits.  She would be far superior to puppy pet therapy. 

Knowing this, you can imagine the potential dangers of taking her to an open-casket wake.  Like a lot of autistic kids, Audrey loves cozy, confined spaces.  She might think it's a Lincoln Log fort that she could go foraging in.  Or maybe a log flume ride like the one that she loved so much at Kiddieland.  I'm absolutely certain that Papa would love nothing more than her company, but it might not go over so well with the other guests.


  1. Lynn, I'm so sorry for your loss. Your blog about your dad was lovely. I have thought about how to tell the kids about death a million times-- so far I haven't needed to but of course I will some day. I'm hoping it will just come to me, how to explain. I think Grace Anne will just want to know that Grandpa is not sad or hurt and I think I will feel comfortable telling her that wherever he is he is happy. And I think Charlotte will just want to be able to see movies/pictures of him occasionally or to hear someone talk about him fondly. So I think I would focus on telling them the truth but keeping in mind their fears or what they might obsess over?? I bet it comes to you. God Bless.

  2. Please accept my condolences. I wish I had an answer for explaining death to a child on the spectrum. Explaining it to any child is a challenge. When my son's great-grandmother died last year we kept the conversation in terms of "gone to heaven" and is in a "good place". From what I've read on your blog, Audrey, even though she is significantly younger than my son, seems to be more cognitivelty advanced. So she might not be satisfied by the vague we explained it to Griffin. I will keep my eyes open for any books or other resources that may be helpful.

  3. Lynn, I am sorry for your loss. Your previous post was a beautiful tribute to your Dad. I think it is great that you put your special memories down on paper (or bloggy paper).

    As far as Audrey goes, I am sorry that I do not have any solid advice for you. I have not had to deal with this situation with Isaiah, and Isaiah is on a different level than Audrey, I think. He is a literal thinker though which is interesting for me because I did not really see that until the other day. Anyway, I am not certain how much you really have to explain to Audrey. I think keeping things on the surface like Aimee pointed out with... He is not sad or hurt. Be truthful while avoiding or softening the areas she may obsess over. But if Isaiah is any indication, for me, the obessive focuses change up. Anyway, no help from me, but I certainly do wish you well. I wish the preparations, and proceedings go well with as little stress as possible. Take care Lynn.

  4. I'm not a fellow ASD parent but another little boy I work with lost his grandma right before Christmas. And what's the solution to many issues and problems for kids with autism? Social stories!!! With help from a therapist, his mom wrote a social story attempting to explain that nana died and was in heaven now. It talked about how he could think about her if he missed her and she gathered pictures of nana to keep with the story. Josh talked about the story and we looked at pictures often after it happened.

    On Saturday we were in my car and he heard in a song something about dying (I didn't hear this but he did) and he told me "my nana died at (he named the funeral home he went to) and she's at heaven now." it was very matter of fact and he didn't offer up any other information. You never know how kids will react or what they will understand.


  5. I have no advice to offer, but loving the visual of Audrey crawling in with Papa.

    I won't have a clue what to say to my kids when we're faced with this. no. clue.

  6. Oh my. I have no clue either, and have dodged this entirely with my 6-year-old, who has very little language and whose cognitive abilities we don't really understand -- she was only 1 when my mom died, and didn't seem to notice when one of our pet rabbits died a few months ago. With my older typically-developing daughter, though, who was 3 when mom died, we used a lovely children's book called "Always and Forever" by Alan Durant, that tells a story with animal characters in which one of them dies and the other three grieve -- but eventually learn to take comfort in happy memories. There are no religious overtones to the book, which might suit your situation well... if it's not too big a leap to tell the social story using animals instead of people.

    Big hugs. It's so hard.

  7. Hi Lynn,

    I hope you're holding up OK. I can't imagine how hard things are for you right now. The fact that you can still write and smile says a lot about what a strong person you are -- which will make everything easier for Audrey, I'm sure.

    These ideas about social stories sound good to me. That would be a much better way to handle it than what I did: The only experience I've had with explaining death -- and I'm not in ANY way suggesting that this is anyway close to the same -- is the recent loss of our cat. I kinda thought, "Well, here's a chance to broach this subject in a small way." And just decided to go for it.

    Billy caught me crying a little after my husband called to inform me the vet couldn't save our cat.

    Billy: (a little upset) Mama is crying.

    Me: (assuming my most beatific and serene expression) It's ok. Mama is crying because I miss Biggie. Our kitty has gone to heaven. (FYI, I don't actually believe this.)

    (Billy looks down at the cat's bowl, confused and even more upset. I try again.)

    Me: Biggie has gone to heaven to be Jesus' cat.

    (Billy's face becomes a mask of rage.)


    Now I'm afraid my son has undeveloped an unfair animosity towards Jesus, the wrongfully accused catnapper.

  8. Just stumbled upon your blog and want to throw my pennyworth. My father died when my son (with ASD, now 7) was only a baby, so I didn't have to worry about his reaction at the time. It was fairly recently that he asked me why is it I don't have a dad, and I explained that my dad had died. To M's reasonable question why do people die I blurted, unprepared, that sometimes it happens when a person is so very sick that the doctors can't make him better. This turned out to open a can of worms. Every time his dad was late from work he would get worried that he had died, same if somebody got sick. His anxiety is gone down now, but I wish I had answered differently!

  9. I'm not an ASD parent either, but when my grandpa died, my daughter was 3.Even though i'm not religious, i told her my Grandpa was in heaven. What a mistake. She had endless questions about where exactly that was, why couldn't we visit, etc. Then my neighbour's 2 yr old died, and I thought I had done a better job explaining that, but one day she asked me if my neighbout had eaten her child. Horrified, it took me a while to figure out what she was really asking. She thought that if my neighbour ate her dead baby, she could have a new baby grow in her tummy.
    I would stick to the facts, and let her questions guide you. I think the advice that you tell your daughter that he isn't sad or hurt is good, and putting the emphasis on remembering him.

  10. Wow, Lynn, you have some wonderful friends/followers. I have never heard such intelligent statements via the internet. Perhaps if her questions become persistent, you could demonstrate death or "permanent sleep" by burying an insect at a cemetary so she knows there is a special place and death is not everywhere. I suggest avoiding the subject of cremation. I will let you know if I hear of anything else but all the advice makes sense - just do the best you can and I am sure you will.

  11. I have no advice but wanted to say you are in my thoughts

  12. my father died last year. i wanted to take my son with aspergers to everything but my mom didn't want him to come to some of things so i respected her wishes being it her husband. he didn't see him at the funeral home, he didn't come to the funeral mass, but he went to the wake afterwards at a restaurnat. we just had someone drop him off there.

    I know this sounds bad, being like he was excluded, but really, like you said, these kinds REALLY don't understand and its astressful circumstance. so..i would just do what you feel is best.

    he does go a lot to the cemetary and runs around like a loon and touches things he shouldn't but my mom (and me) don't seem to mind this as much.

    anyway, i am sorry. I have been thinking of you.

  13. I lost my daddy on Feb 7th. My heart goes out to you. My dad and my oldest that is autistic were very close. He started hallucinating seeing my dad. I dont have any advice for you on how to deal with it with your child but know that my heart goes out to you and I wish you did not have to go through it.

  14. Have you spoken to a dr.? (I'm not big on talking to them myself, so if you didn't I can understand why) Talking about death to any young child isn't easy. Even if it's beloved pet, you just never know who they'll perceive it. There's great advice on here, but only you know which route to take since you know Audrey and her personality best. Don't stress on it, it'll come.

  15. Wow, sorry for the grammatical errors. Meant to say "You just never know HOW they'll perceive it".

  16. Fellow Autie Mom here, and yes, I've tried. It doesn't work. We haven't had anyone close to us pass so we are lucky, but my son loves graveyards (weeeeiiiirrrddd right?) and so we have discussed it.

    My advice, have Audrey skip the wake. I truly think that the open casket thing will be too much for her.

  17. I have no advice for you. My daughter lost two of her grandparents when she was very young. When our cat died, we just explained death very literally. I think she gets it as much as any kid would.

  18. I have Asperger's, and my grandparents passed when I was a similar age to Audrey. I distinctly remember my parents reading a book called the 10th good thing about Barney about a cat that died. I had absolutely NO idea what the heck the book had to do with my dead grandpa. Honestly, unless you're really into the religious thing, go for the straight and easy explanation. 'When people's bodies stop working, they die. They stop breathing, their heart stops beating, they stop thinking. It is not like sleeping because you never wake up, and you do not breathe. We put people's bodies into caskets and put them in the ground. grandpa will not be coming back because he is dead.'
    If Audrey is anything like me as a kid, likening it to a dead animal will just confuse her. As will any talk of heaven, because to black and white thinkers, there is no gray between dead and alive. There is either dead, in the ground, or alive, walking and talking. Feel free to email me with any questions. I hope I didn't offend you by telling you to ignore the religious stuff.
    -Ekie (ekaterina84@hotmail.com)

  19. For my boys I just straight up explained what being dead means. That their bodies are no longer working. We are religious, so I did talk to them about the spirit leaving the body and going elsewhere, to do other things. Other religions may not quite explain it that way, but, oh, well. For them hearing the straight answer worked well. We regularly talk about dying, not in a depressing way, but in a matter of fact way. The thing is, it depends on your kids. Mine are not sensitive and like to know the facts and don't get scared. Other kids may be more sensitive. You know Audrey well, so you can probably guess if it would scare her. Anyways, just thought I'd share what I did. It's never easy, is it?