Everything we did to prepare A- for my dad dying
And how A- seemed to grieve with the tools we gave him
This past June my dad died after a long battle with cancer. I've been sharing with y'all how we've supported A- in piecemeal, but now I want to share everything and where we're at today.
** attached photos are samples from various pictellos. DM me if you want any of them in full **
Background:
Around March we knew that my dad's cancer was terminal. And we were going to spend at least a month with them (in Canada). We knew we had a LOT to explain to A-, and at the time it wasn't clear how much spoken language he took in when we just said things in a conversational way - so we had to use a lot of Pictello. Also it's not clear how much A- takes in books, and he's never been into books with drawings (instead of photos) and it's unclear that animals as proxies for people works for him. AND we have to make Pictellos that are meaningful to him. So if a book says "a rock isn't alive", he may not care. But if we have a long blue MTA bus and explain that that isn't alive, he's very interested.
How we prepared him:
We set about making Pictellos. We had to:
1 - Explain the concept of life. What is alive? We made a Pictello, that I shared here, based on the Sesame Street song "I'm alive" that shares how people and animals are alive because we eat and breath and grow, and buses and stuff are not.
2 - Make a Pictello to explain the concept of death. That all things that are alive one day die. I've also shared them here.
3 - THEN make a Pictello to explain that Tha Tha is going to die, and why.
We had to do all of these very carefully, because at 5, it would be very common for a kid to ask a lot of questions about death. But A- can't ask questions. We were very worried he would walk away with a ton of anxiety, but no ability for us to reassure him. We crowd-sourced the kinds of questions 5 year olds could have and tried to preemptively include them in our Pictellos.
We also spent some time reading Easy Read and Plain Language books about death for adults with ID. This helped us get the straightforward and clear language that we needed (but adjusted to be kid appropriate).
We also had the practical issue of... although my dad knew he was going to die he may not love someone playing a Pictello that says "Tha tha is going to die" over, and over, and over again, right in front of him. And my mom most certainly would not!! So we printed out PDFs and laminated them - not A-'s preferred medium but we tried reading them to him as often as possible.
As a side note - it felt very, very, very meditative that I had to write, read, and listen to, very blunt descriptions of death, and how once someone dies they aren't here anymore, and we can't talk to them anymore, and Tha tha will die, and we can't see him anymore, and talk to him anymore, over and over and over in the months before my dad died.
There was also a lot of logistics to figure out - explaining to A- why he couldn't touch my dad (well we had a song with "one finger on his hand" as the way he COULD touch him). And then for the actual dying, Daniel and A- came back to NYC and I stayed in Canada so we had to make our usual Pictellos, calendars, etc, when there are changes like that.
For after my dad died, we made a Pictello that was about "Tha tha is dead".
After my dad died, A- stopped watching Pictello and started just wanting to watch bus videos all day. We don't know why until A- can tell us, but we wondered if it could be because of all the Pictellos about Tha Tha dying and in hindsight it seems even more likely that's the case.
We went to be with my mom for a month after my dad died, and A- seemed cool with it.
A- started watching Pictellos again maybe a month ago. And I noticed this...
He started out just watching the Pictello about being alive, and what that means. As well as a Pictello that my dad made about enjoying sitting on his chair and playing on his phone and how he misses A-.
He watched different ones about visiting my parents, about my dad in general - including one where he was sick last summer and needed surgery to get better, etc.
THEN he started watching the one about how we have to be gentle with Tha Tha because his body is sick.
And then, just recently, after all that, he started watching the one about Tha Tha being sick and dying.
And then the other day, for the first time, I saw him watch the one about Tha Tha being dead.
Throughout all this, when he'd watch a Pictello about my dad I'd reinforce the idea that my dad is dead "Ya... Tha Tha is dead" and about how I miss him, and I really like thinking about him and the fun things we'd do together.
This last time he watched a Pictello, A- said “Tha Tha is" with his mouth, and I repeated back "Tha tha is" and then he completed "dead!". Yes indeed. Tha Tha is dead. And it's a journey for A- as much as it is for all of us.
If you want any more details, or want to see any of these (especially if you're going through the same thing!) just let me know and I'm happy to share. We did a LOT of work, and had the time and space to do it, so I'm happy to do anything I can to ease someone else's journey a tiny bit.