I always wondered how I would approach death with my children. I was kind of thankful all of our parents are pretty young comparatively and we wouldn’t have to worry about it for awhile. I am not going too far into it, but I know a thing or two about having to explain it to a child before you should have to. Anyway that would make you think I was prepared. Then God went and gave me a special needs child. So talking about death is a bit of a double whammy, and I thought I had time. Ha!
I got a call from a friend in Pittsburgh that one of my daughter’s TSS (therapeutic service support) professionals had passed away. Frances hadn’t seen him in a year, but she does have a Pittsburgh photo album and she talks about everyone in it like it was yesterday. He was a great assistant to her. Because of the Pennsylvania wrap-around program, my daughter was able to participate in activities I never would have enrolled her in if she had been on her own. I felt the loss of this person who had played a roll in our life as we accepted the fact that our child had an autism spectrum disorder.
We decided not to mention it to her until it came up, and she hadn’t brought up the pictures in a while. What was I supposed to do when it finally did come up? Was I supposed to pull out Maria Shriver’s book? Sing Eric Clapton to her? Find something from her Children’s Bible? I didn’t know.
Sure enough, tonight she reminded me that I told her she could go to Pittsburgh with me in May. Then she started to rattle off her plan, “I’m going to see Rose, Katie, and Minjune, and Jordana, and Virginia. And who else Mommy? Who else?”
I tried to deflect it, I tried to distract her with Princess Tiana, and how we were going to a movie theater to see
The Princess and the Frog in December, but she wasn’t having it.
“I’ll get to see Sarah and Ben!” What could I do? I couldn’t even pull a Judge Judy and walk away from this one.
“Well, you can see Sarah and have a sleepover party with your friends, but Ben won’t be able to come.”
“He doesn’t want to see me?”
“No, sweetheart, been loved “babysitting” you. (She called her assistants babysitters.)
.
“Is he sick?”
“No, he just… he’s taking care of Jeremy for you, and so it will be a while before you get to see him again.” Jeremy was our English Setter that died last year at age thirteen.
She smiled, “I’ll bet Jeremy loves Ben.”
I smiled and fought back a sob, “Yes, I’m sure that Jeremy loves Ben too.”
I am including this on my blog because I am sure that, my daughter’s disorder being what it is, she is going to ask me where Ben is several more times before we actually get back to Pittsburgh, and my story is going to stay the same. Ben is playing with our dog. We won’t see either of them again in this life, no matter what you believe of the next one. And the right thing to tell your child, be it that the Imagination Movers are wearing Yo Gabba Gabba costumes or someone you loved is playing with a pet you loved, is going to come to you when you need it. Maybe as she gets older and her disorder more controlled, I can go into it with her on a higher level, but for now, my child knows that two people she loved are together, even if she can’t see them.
Man some days are hard…
Recommend
Comments (12)
That is tough. I'm sorry.
How old is your daughter? When I was 9 and my autistic sister was 12, our grandmother died, and my parents were able to explain it to my sister pretty well, explaining that grandma had gone to live with Jesus. They even took her to the viewing, and when she looked she said, "grandma's made of play dough." It was a pretty insighful moment, so my parents say, because in essence, we are shells with ghosts living inside. It was amazing that she understood that.
I don't know if that anecdote helped at all xD I'm hoping I didn't force my faith on you or anything, because I saw that you mentioned God and the Bible and stuff.
My best wishes to you and your family!
@moonlightmisto@xanga - You didn't force your faith on me at all. My daughter is five and very realistic. At this stage, she would probably look for heaven in the attic. I left religion out of it to protect the anonymity of the boy who died, actually. He was of a different faith and I tried to be respectful of him and his family. She is still repeating it, "He is with Jeremy, Ben takes care of Jeremy now."
This post actually made me cry. Not in a bad way though.
Both my sons are autistic. We lost their biological father to suicide and someone decided it would be better for my oldest son to know not only that his father died, but that it was suicide by stepping in front of a high speed train. The ramifications of their decisions are still being dealt with today.
My youngest doesn't ask about his father but he does have problems or did. Hasn't happened in awhile. When my new husband dropped me off at a salon and was driving away without me, my youngest asked "Where are we going to get a new mom now?" Because he had gotten a new dad after his last one disappeared. It took some explaining that I wasn't going anywhere permanently this time. I was just getting my nails and pedicure done.
When your child has autism, how you deal with death matters a great deal. This was a great way to explain it for your daughter.
John Edwards has a way he uses with children and it may be appropriate for some others. He fills a glass with water. He tells the child the glass is like our bodies and the water is the soul God puts inside our body. After a few days, the water level goes down. Then you explain to the child that the water evaporated into the air and our souls, when we die, are similar. They're all around us. It's better for kids to think of their loved ones being closer than this far-off place that's unreachable to them.
The only problem with this tactic is for those autistics who don't get metaphorical type things. But explaining the representations might help. Just an idea.
My heart goes out to you. It's always sad to lose someone you care a great deal about.
Hello
I want to say that your post make me very sad.I really like that you share your experience with us.I can understand your feeling and I think you have done a great job for your lovely daughter.
You did exactly as I would have done. When I was in the process of grieving for my Gran, whom he didn't have a chance to get to know, I told him tales of who she was in the walking world. I had mentioned my Grunpa passing, in my younger days,and it was mentioned that my stepfather and Gran always had a sort of "friendly animosity" - she was a health nut, while he consumed precisely nothing organic. It's one of those things...
At any rate, when my stepfather passed on, it was he who came to me, saying, "You think Great-Gran will finally get him to stop smoking?" - and we had a sad laugh together. He added something to the effect of hoping there's enough coffee for Great-Grunpa and PJ [they were heavy coffee drinkers].
All is well, you did great.
This is definately a situation that most people have a hard time with, I think you handled it perfectly
@heatherbabes - that is horrible that someone told your son about that... was it someone close to you or where they not thinking about it?
@wolvenchic@xanga - It was an older family member who didn't grasp the concept that my child has certain... challenges. Her thought was that it would be better for Thomas to know now about it then rather should he have a need to access his father's death records later and learn then OR hear about it on the news (as it was a headlining event). I watch what my kids watch... there was very little chance of that happening and at the time Thomas didn't go to other people's houses so there was no concern of him watching it there. I don't think this person thought really at all beyond what SHE would have thought best. Again, she didn't understand Thomas or his special needs at all. Very few family members understand that Thomas is as autistic as I am or his younger brother because he's more high-functioning than either of us. That's just due to ABA early intervention (at age 5 months from a pre-natal stroke) which makes him better at every day living and social skills. HIs cognitive challenges and emotional challenges remain, of course. I don't think she did it out of animosity or anger or nastiness but sincerely thought she was doing a good thing and it came from a place of love. As weird as that might sound!
@heatherbabes - personally I was an aba therapist for a while and understand the different levels, but its always different for me to understand some of it on the other side of the page; There are a lot of people who dont understand ASD, but I was one of those people until I got involved. Not that it has anything to do with this post, but when I read that I was pulling at my face thinking "Oh my gooood"
@wolvenchic@xanga - Yeah, not everyone understands autism until they study/research it. Even despite having it myself all these years, I still don't know near as much as others do! I learn what I need to learn as the days go by and things crop up. Kind of learning on the fly.
Which to make it relate to this post! I think how parents handle death is the same way. You can plan and study how others deal with teaching kids, but each kid is an individual and when it does come up, you'll handle it on the fly... as you've learned what your kid can cope and understand with best!
@heatherbabes - I have had the same problem with relatives. For a long time we were limited in what we could do that had a noisy crowd. I actually had someone say we were turning her into Veruca Salt by giving in to her. I don't think we were giving in, I think we had an ASD diagnosis. Don't you love it when family knows more than the doctors....
@themommyquack - Oh yeah. And some are very well-intentioned too and that kinna makes me sad. Because I don't want to hurt THEIR feeligns but I do inform them when they're wrong. In the most polite manner I can muster, usually. LOL
Brandon does well with crowds now, and Thomas always has. He LIKES the noise. I had to leave a cousin's wedding once because Brandon wasn't coping. Thomas stayed and entertained the guests with his solo version of cotton-eye joe and then taught everyone there how to do it. Strange their different abilities. That's what makes it so hard for people to understand. Thomas had early intervention from the age of 5 months, so of course he's going to be higher functioning than his brother but doesn't mean he doesn't have problems.