The Final Journey
September 20, 2012 2:47 PM   Subscribe

Help me explain death to my 9 year old.

Challenge: she is developmentally delayed (Down syndrome, stroke at birth).
Her grandfather (baba) passed away unexpectedly. I'm trying to prepare her socially and emotionally for the memorial service. Avoiding it is *not* an option. I'm trying to get enough understanding to avoid inappropriate outbursts at the service, like clapping, laughing or cheering, or yelling out to her bans (it will be open casket). I'm patient, but I just had another conversation that she drove to bickering over things I can't possibly chafed (baba is dead, a lot of people will be sad). She is offering precious little for me to latch onto to help me how much she gets. She is inventorying what we'll pack.
posted by plinth to Human Relations (17 answers total) 1 user marked this as a favorite
Best answer: I attended a funeral recently where there was a young (maybe 8-10 years) Downs child in attendance -- it was for her grandmother.
She was mostly calm and quiet, but clearly not quite grasping the totality of the situation. Towards the end, she started crying a bit, then yelling out at the minister and finally clapping and cheering at the recessional music. Nothing her mother or older sister did could really cover up the disruption.

And really, nobody minded at all.

Even her family members eventually just shrugged and patted her on the back to calm her as best they could.
I think you should do your best to prepare her for the need to be quiet (like at school or at church) but realize that there will be very few people who judge you or her negatively for something she just can't handle.
posted by mmf at 2:59 PM on September 20, 2012 [24 favorites]

If I knew I was going to be seeing someone I loved for the last time I'd want people to respect how I chose to show that.
posted by dgeiser13 at 3:07 PM on September 20, 2012 [1 favorite]

How much time do you have? I recommend going over both a book on grief and a book on life cycles/etc. The local library should have similar books available.

This is a good general guide to parenting young kids through challenging experiences. And this is a good general guide on children and grief.

And everyone understands that kids have a hard time at these kinds of events. Whatever you do, don't keep her from the funeral. My dad did that to me when his mom died, and I'm still kind of mad about it twenty-two - no, wait, almost twenty-three - years later. If she has a comforting item that keeps her relatively engaged, let her bring it, as long as it isn't noisy. Also, make sure you do everything you can to keep her physically comfortable before and during the service.

(It's a good idea to practice/explain the whole "sometimes we have to be really quiet and sit still" thing, but that's hard to introduce two days before an event for any kid, let alone one with developmental challenges who's in the middle of a huge and stressful life experience.)
posted by SMPA at 3:08 PM on September 20, 2012

2 good books :
10 good things about Barney
The Dead Bird

Think those are the titles, my Grandma gave them to us when one of the kids started having many questions about death.
Also completely agreeing with mmf above.
Hope those are the correct titles, this is on the fly as we are in the waiting room at pediatrician.
posted by slothhog at 3:10 PM on September 20, 2012

Oh, also, you probably know this, but it bears repeating: regression to earlier developmental stages is totally normal in the face of grief/stress/etc. She probably understands better than she's able to express right now.

(Slothhog's books are "The Tenth Good Thing About Barney" and "The Dead Bird," BTW.)
posted by SMPA at 3:13 PM on September 20, 2012 [2 favorites]

You know, I think you make the statement to her you need to make, at a level you think she will understand. And then you leave it up to her, and up to those at the services. She will respond as she needs to, and I suspect people will understand. Those that don't probably aren't worth worrying about.

And take off your own plate the responsibility for her behavior, you have your own grieving to do.

Love her through it.

My condolences, hang in there....
posted by HuronBob at 3:20 PM on September 20, 2012 [6 favorites]

People will be very understanding. There is a boy at our church with delays and during the service he'll yell out, "SpongeBob!" or "Ouch! That' hurt!" Often he'll erupt into hysterical laughter. When he gets too loud, his mother will rub his back and tell him "shhhh." I think she used to get flustered at his outbursts and trying to quiet him, but no more. No one minds. We know who he is and that he can't help it. The mom has brought him to funerals. No one minds.

So, even though your daughter may not do or say what are expected appropriate things, it's ok.
posted by Sassyfras at 4:15 PM on September 20, 2012 [3 favorites]

Some people have found "The Lion King" helpful for explaining death to small children.

Best of luck.
posted by Michele in California at 4:56 PM on September 20, 2012

It might help to rehearse the funeral in a way - tell her the events like "We'll wake up and put on our special clothes because it's the funeral day. Then after breakfast we'll take a car ride to a building called a funeral home. There will be lots of people you know there. We'll go into a room and sit quietly while people sing and talk about Baba, etc." That way you can sort of script out the day and practise it for her then remind her during the day so it's not so confusing and she knows what's expected. A favourite toy for comfort, colouring books to keep her busy, these are all good.

Don't tell her it's like falling asleep or going on a long holiday because some kids then become afraid of sleeping or going away on trips from the association.

Anyone who complains about how a little girl who has lost her grandad acts at his funeral, especially a little girl who is in some ways having to understand with more difficulty - my impolite reaction would be to whack 'em, but I would just snub them utterly. She's little, she loved him, decent people will understand if she acts up.

I'm so sorry for your loss.
posted by viggorlijah at 6:08 PM on September 20, 2012

What viggorlijah is describing is a social story, which is basically a picture book or short story that includes detailed descriptions of common social situations and behavior. They were originally developed for children with autism, but they've been used to teach social skills to children and adults with Down as well. (Scroll down to the subheading "Promoting Social Development for Teenagers" on that page to read a definition of social stories. One of the specific examples they give of a great use for social stories is explaining death, grief and loss.)

This Digital Lending Library includes social stories that you can download to get a sense of the language and format that other parents have found useful if you want to write your own social story.

Here is a list of social stories about death, dying and funerals that you might find helpful.
posted by Snarl Furillo at 6:32 PM on September 20, 2012 [1 favorite]

Response by poster: Thanks for the suggestions. I keep trying. I'm trying to give her a coping mechanism and constructive outlet for her emotions - that she can go up to people and say "I'm sorry." and "I love you."

For many things, we have to translate what she says and offer her an appropriate sentence for what she means. When she talks about packing, what she's saying is "I miss mommy and I want to see her again."

We've already read 10 Things about Barney a few times.

One of the issues that we have to deal with is that the widow, my mother-in-law, at her very best is tolerant of my daughter. She will not be at her very best. I fear that her tolerance for atypical behavior will be limited and her resentment long-lived.

We've talked about this a lot and I've tried to prepare her for being at a church service (something familiar) and that there will be a lot of sad people there and that it's OK for them to be sad.

I've talked about the days we have as a gift and that it's a sad gift and a happy gift because the days are so wonderful, but they run out.

I've tried to reassure her that mommy and daddy will take care of her.
posted by plinth at 6:48 PM on September 20, 2012 [2 favorites]

Maybe you can talk to her about how she feels when she's sad and doesn't know what to do. How does she get to feel a little better? Does she like to be hugged? Does she like to be left alone? Does she have a special blanket or teddy that makes her think about good times? Things are like that for adults, too. She would want someone to take care of her, right? She can help show love to the people who are sad. She can hug them (if they are okay with that) and maybe she can do things like draw a picture or tell them about a nice time she had with her baba.

When she misses Mommy, you can say that Mommy misses her too, but Mommy misses her own Daddy, and this is a time for us all to just love each other a lot.

I love reading your questions about your daughter. Things always depend on whatever is going on in that moment, right? She might be confused and upset; she might be an example to everyone there. You know her best. You will all be great.
posted by Madamina at 8:04 PM on September 20, 2012 [2 favorites]

Best answer: One of the issues that we have to deal with is that the widow, my mother-in-law, at her very best is tolerant of my daughter.

Ugh. It sounds like the person you need to prep isn't your daughter, it's your MIL.

Is it possible to explain how your daughter is really sad at losing her grandfather, regressing to earlier developmental stages under stress is normal, etc so that she sees your daughter's behavior for what it is - an expression of grief - and not as something bad?
posted by selfmedicating at 8:21 PM on September 20, 2012 [2 favorites]

My brother is developmentally delayed (birth injury, not Down), and in stressful times (this includes when he's bored & overwhelmed, like at church where maybe he doesn't understand everything that's being discussed and to him it seems to be going on forever) he does sometimes laugh or make a joke (he did this more when he was younger, now that he's older he has different coping mechanisms for this, but it took a number of years) - personally, as his kid sister, I think he does this to distract himself and also to let people know, "I need a bit more attention, here. This is going over my head / is stressful to me / is boring." In my brother's situation, which I know is quite different from your daughter's, there are people who understand, there are people who tolerate, and there are people who are actively unpleasant about his behavior. Frankly, I love the first group of folks and show them appreciation as frequently and vocally as I can, am usually grateful at least that the second group aren't in the third group, and ignore the third group as much as possible (when I'm not glaring at them). Your daughter isn't doing anything wrong, she's just coping the best way she knows how. Your MIL is an adult with (as far as I know) no developmental issues, and if she has a problem with a little girl (any little girl, let alone her granddaughter) who's overwhelmed at the funeral of her grandfather... Let's just say I'd have very little time for that kind of behavior. *That* is what I would find inappropriate.

Apologies if this isn't directly answering your question, but I do think you're doing an excellent job already of talking with your daughter about death.
posted by pammeke at 3:31 AM on September 21, 2012

Response by poster: Thank you. If there was a problem with my MIL, I won't know it for months. There was prep and vying. We invited her to the casket to say prayers. She tried to wake him up, but was polite enough. She tried grieving as what appeared to be an affectation. I chose to make her the unofficial hug ambassador and sent her to hug the grieving. A couple times I heard her say, "I'm sorry you're sad."

She loves the social process and was happy to introduce herself to as many people as possible.

Towards the end I tried to eavesdrop on a prayer and thought I heard, "...and baba is alive and thank mommy for the gifts." I assume she was talking about how we talked about life being a gift. I can't say for sure.

The day is over and went smoothly enough. We'll see how things fare in the future.
posted by plinth at 8:42 PM on September 21, 2012 [2 favorites]

plinth, you obviously handled it well, and so did your daughter. Good on both of you.

posted by HuronBob at 3:08 AM on September 22, 2012

I know I'm coming into this one late, but I've not seen the answer I'd give yet.

Truthfully, you've probably already done all of the explaining she can tolerate, but I'm guessing that she doesn't know why you're trying to explain all of this stuff to her. If I were in her shoes that would be more confusing than anything.

I'd also wager that she's going to have questions afterwards. That's when you need to bring out your references to The Lion King or whatever.

I spent a number of summers at a camp that was for differently abled people of all types. While I never had to get into that depth of understanding, the one thing I took away from it was that each of these individuals dealt with things differently (just like everybody else). While there may be a right and wrong way to try to communicate that your shoes are uncomfortable or that you'd like some more food, there really isn't a wrong way to communicate that you're grieving for a lost one.

Most of all you just need to be there for her, show her you love her, and that no matter what happens you always will. It's a scary concept for everybody, probably even more so for those of us who communicate on different levels. So just make sure that she understands that no matter how she chooses to express that fear/concern/whatever, that it's okay for her to do that.
posted by Blue_Villain at 6:32 PM on September 22, 2012

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