These are the slides for the "Using music to help with transitions and grief" presentation at the Asia Pacific Autism Conference in Singapore on 20 June 2019. Content warning for slides: * Loss of a loved one * Grief * Suicidality The video of my narrated PowerPoint slides can be found here: https://youtu.be/gg5nFtRVtHg

1. Using music to help with transitions and grief
Penny Robinson
APAC 2019
@PennyRobaus @Monash_SPHPM
@herautism @I_CAN_Network @AspergersVic

2. Content warning
• Loss of loved one
• Grief
• Suicidality
Need to leave? Narrated PowerPoint available for viewing later.

3. Music
Types of music
• Instrumental music, without lyrics
• Classical music, with lyrics
• Music with lyrics (sometimes sing-along!)
Recorded music is predictable – sounds the same each time!

4. Types of transitions
“Big”
• Starting school
• Primary  Secondary
• Leaving school  uni
• Starting work
• Moving out of home
• Relative moving into care
• Grief/loss of loved one
“Small”
• Get ready for school/work routine
• Start school for day
• Class  recess/lunch
• Normal teacher away
• School holidays
• Holiday as adult
• Work travel

5. Music & transitions – general
• Music part of my life through school – learnt violin, in orchestra & choir.
• Public transport / plane travel: noise-cancelling headphones + music + window = 
Something predictable to focus on when overloaded / stressed. (outside noise reduced)

6. Changing the guard of independence
Year Grandma Me
2005 Moved from own house  granny flat Honours year
2008 (Youngest sisters finished school)
2009 Cooked for us using new slow cooker
while parents away on holiday
Finished my Masters
2010 Turned 90, got iPad Started full-time work
2013 Mum cooked meals for Gma Sisters home less; I spent most evenings
with Gma
November: Moved out into own place
2014
Fall, shingles & pneumonia (#1) in 6 wks
Brought meals from my place for Gma
Moved “home” while parents away
2016 Parents away = Gma in respite
Sick 4 times (2 hospital – pneumonia #2)
November: Moved into aged care
Promoted to Lecturer @ work
Contact person for hospital
As my independence increased, Gma’s decreased.

7. Music related to moving out of home
• I learnt most of my “independence” skills while parents away – with Gma in the granny flat available for
guidance when required. (But not looking over shoulder in kitchen, like mum!)
You Raise Me Up (Josh Groban)
When I am down and, oh, my soul, so weary;
When troubles come and my heart burdened be;
Then I am still and wait here in the silence,
Until you come and sit awhile with me.
You raise me up, so I can stand on mountains;
You raise me up to walk on stormy seas;
I am strong when I am on your shoulders;
You raise me up to more than I can be.
• Younger sisters all spent less time at home gradually over time.
I went from living full-time at parents  my place in one leap!
Jump (Madonna) “I’m going down my road and I can make it alone
I'll work and I'll fight till I find a place of my own”

8. My reaction to Gma moving into aged care
• After pneumonia (#2) mid 2016, Semester 2 teaching.
I felt guilty that I wasn’t able to help mum with Gma more.
• I thought her moving into care was the “worst thing” –
partly cos she’d got sick 3 times while in respite, and I didn’t
want her to get sick again.
• Mum didn’t tell me Gma was moving into aged care until
the weekend before Tues move. Not much time!
• Gma’s aged care was between train station & my place
• My new routine: visit Gma almost every day
• Gma was less confused & happier after she’d settled in.
• I saw Gma more than when she was in granny flat!

9. Aged care place runs regular music concerts.
They helped me in 3 ways.

10. 1 – Music helped Gma settle into care &
made me accept she needed care. Part of community
• Dec 2016: Many Christmas themed concerts
Helped Gma settle in & I accept she needed care.
“O Come All Ye Faithful” descant
= Gma proud as punch!
• Jan 2017: Stuck in lift (alone) during evening
go-to-bed rush hour
Many residents in the lounge room knew me then…

11. 2 – Music gave us something to enjoy together.
• If there was a concert scheduled on my day off, I visited during concert time.
• Some songs I already knew, and Gma loved when I sang along (up high):
• Sound of Music (Edelweiss, Do Re Mi);
• Danny Boy; Country Roads
• Learnt several popular songs from 1920s – 1970s:
• Bicycle built for two; Show me the way to go home;
• Que Sera Sera; South of the border (down Mexico way);
• Sweet Caroline (Not as much fun when Caroline on leave!)
• Sing-along songs:
• Road to Gundagi; Side-by-Side

12. 3 – Music helped me after Gma’s death
• Encouraged (by lifestyle staff) to keep on coming to the music concerts
• Drawn to visit when struggling with “firsts”
• First mother’s day
• First autism related trip (Future Leaders 2018)
• Primary school choir on 4 Dec (Gma’s bday)
• Lived from concert to concert, Dec 2018!
• 1st anniversary – art class (highlight of Gma’s week)
Primary school choir, 4 Dec 2018
recognised teacher from MY schooling!

13. After all of Gma’s “health mischief” in 2016…
I came up with term “final mischief” = death.
My psych & I came up with Gma “final mischief”
plan for two reasons:
1. When my uncle suddenly died in 2015, mum sent to me an
email (titled “Wednesday”) – I was worried how mum would
communicate any news of Gma’s death when it happened.
2. When Gma moved into aged care, I had discussions with
Rowena (friend) that made me realise I’d had thoughts I didn’t
want to be around after Gma had died.
I told my psych so we could work through this.
Plan focused on immediate finding out.
Included many different scenarios – with info from
Monash (car parking) and Qantas (flights).
Gave plan to mum, work & friends (incl APAC 2017)

14. Using music lyrics to indicate how I was feeling.
All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something
Hold on Feeling like I'm headed for a breakdown
And I don't know why
Communication: written preferred to “get out”/“process” emotional things for me.
Email / write / Messenger / Emergency Chat / Speak for me all options.
Used lyrics from Feel (Robbie Williams) to indicate to my psych how I was feeling in the
lead up to “birthday week” (Dec 2018) – Gma, mine & Heather in same week.
“I don’t want to die, but I’m not keen on living either.”
Lyrics from Unwell (Matchbox Twenty) reminds me that things will get better when my
mental health isn’t good.
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me

15. Other things that helped with death process
• Gma had “Advanced Care Plan”, so we knew her wishes.
• Pneumonia bout # 3 = didn’t go to hospital (change of environment, confusion)
stayed at aged care = familiar staff (for her & us) caring for her.
• I knew the staff, so I felt comfortable to ask Qs even if I broke down part way through asking.
(i.e. Once palliative care starts, what to expect & how long?)
• Previous discussions with Rowena about her brother’s death = I’d already thought about my
preferences for being there/not. If choice = yes I wanted to be there when she died.
• Messenger (typed, interactive) enabled me to keep a cousin informed with facts easily.
She knew more from me than her dad’s phone calls!
• Regular email communication with my psych during & many appointments since.
• Mum stayed with Gma in aged care Sun, Mon & Tues night. I decided to join her on Tues.
Happier in Gma’s room than in my place, alone.
• Gma died ~ 6 am, Wed 18 April.
Mum & I were with her = no need to receive “dreaded phone call”
Two of us in room = helped while we waited for nurses to arrive after we’d pressed the bell.

16. Other important things to consider
• Everyone responds to grief differently.
• Death might be difficult to think about, or talk about – but it needs to be done.
• I found out Gma wouldn’t be having a funeral – at all – days before she died.
Only social story I knew: death, then funeral.
How do you get closure without funeral???
• Relatives overseas? Do they return after death? If they don’t – how do you deal with them coming “home” later?
• What about cultures with “next day” burial? Not much time for o/s relatives to fly home to participate.
• Something super important? Don’t just say it once!
• No funeral => I thought taking urn to cemetery would be “closure”, so I told mum I wanted to be part of that.
• Mum & Uncle took urn to Brighton cemetery without me – cos they were both free. (Mum forgot about my wishes)
=> Huge meltdown!

17. Lyrics from Regis concert songs that “speak” to me
• You are my sunshine
• Can’t help falling in love
• You don’t have to say you love me
• Que Sera Sera
with belly dancer, Tue 21 Aug 2018.
(Took ‘in lieu’ half day from work to attend)

18. You are my sunshine
You are my sunshine, my only sunshine
You make me happy when skies are grey
You never know, dear, how much I love you
Please don't take my sunshine away
The other night, dear, as I lay sleeping
I dreamt I held you in my arms
When I awoke, dear, I was mistaken
So I hung my head, and I cried
You are my sunshine (chorus)
I'll always love you and make you happy
If you will only say the same
But if you leave me to love another
You'll regret it all one day
You are my sunshine (chorus)
I felt Gma was my “sunshine”
I sang this to Gma on the way to the lift one day!
Gma got pneumonia (so warning)
Mum & I slept at Regis overnight on Tuesday…
… she passed away around 6 am the following morning.

19. Can’t Help Falling in Love (Elvis Presley)
Wise men say Only fools rush in
But I can't help falling in love with you
Shall I stay? Would it be a sin
If I can't help falling in love with you?
Like a river flows Surely to the sea
Darling, so it goes
Some things are meant to be
Take my hand, Take my whole life, too
For I can't help falling in love with you
Like a river flows (repeat verse)
Now that Gma is gone, should I still keep on coming to Regis?
Most definitely – I’ve made lots of friends there.
I enjoy visiting and sharing my news with them.
“Man with all the hats” performed Oct 2018.
Sun through high window => frilly hat of his!
Royal “you” = everyone “you”

20. You don’t have to say you love me (Dusty Springfield / Elvis Presley)
When I said, I needed you
You said you would always stay
It wasn't me who changed, but you
And now you've gone away
Don't you see that now you've gone
And I'm left here on my own
And that I have to follow you
And beg you to come home
You don't have to say you love me
Just be close at hand
You don't have to stay forever
I will understand
Believe me, believe me
I can't help but love you
But believe me, I'll never tie you down
Left alone with just a memory
Life seems dead and so unreal
All that's left is loneliness
There's nothing left to feel
Went shorts shopping with mum on Gma’s 1st anniversary
First song playing in shop while there!
I didn’t say “I love you” to Gma
But my actions showed how much I cared for her

21. Art class – highlight of Gma’s week!
Gma loved seeing photos of the family on her iPad
I printed off her favourite photos.
“left alone with just a memory” …
And LOTS of photos (taken on my phone!)
and then printed out.

22. Que Sera, Sera
When I grew up and fell in love
I asked my lover, "What lies ahead?
Will we have rainbows day after day?"
Guess what my lover said
Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
What will be, will be
Now I have children of my own
They ask their mother, "What will I be?
Will I be pretty? Will I be rich?"
I tell them, "Wait and see."
Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
What will be, will be
Que sera, sera
When I was just a little girl
I asked my mother, "What will I be?
Will I be pretty? Will I be rich?"
Here's what she said to me
Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
What will be, will be
Since I am just a boy at school
I asked my teacher, "What should I try?
Should I paint pictures? Should I sing songs?"
This was her wise reply
Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
What will be, will be
Que Sera Sera is a regular sing-along
Song about life cycle.
Words ring true, because Gma moving into care was
meant to be, as the music concerts at her aged care
made both of us feel part of their community.
I’ve made friends with lots of the other residents, so
this community feel has continued for me after her
death.
Thus creating a much smoother transition to “life
without Gma” after her death.
Lorraine: “You’re part of the place now”
When I thought that Gma moving into aged care was the worst thing ever, I
wasn’t thinking beyond Gma being alive, to “life without Gma”.
Now, thanks to the music concerts and community, her moving into aged
care was the BEST thing that could have happened.

23. “What will be, will be” – getting closure
Discussion with Gma, while telling her all about APAC 2017 in Sydney…
Penny: “The next one is in Singapore from 20 – 22 June 2019”
Gma: “Are you going to go?”
Penny: “Only if you ‘behave’ yourself” aka don’t get up to any “health mischief”
* Reality = felt uncomfortable leaving Melbourne, let alone going overseas *
After Gma died: She can’t get up to any “mischief” now… I can go to Singapore!!
Inheritance received 22 June 2018. She was so proud when I gave talks on my autism at conferences,
or travelled interstate for autism related “stuff”, so she can fund me to APAC.
I hope this presentation has “done her proud”

24. Penny and Gma (almost 95) at I CAN Launch (23 Nov 2015)
In memory of Joyce Fuller
4-Dec-1920 to 18-Apr-2018
“You(’ve) raise(d) (us) up
to more than (we) can be”
Penny & Gma at aged care, 12 Oct 2017

25. Contact details
https://awegust.everydayhero.com/au/penny
Penny Robinson – speaker
 Email penny@icannetwork.com.au
 Facebook : https://www.facebook.com/PennyRobinsonSpeaker/
 Twitter: @PennyRobaus
 LinkedIn: https://au.linkedin.com/in/penny-robinson-a0847661
Autistic advocate
Lecturer, Monash University
Ambassador of The I CAN Network, Yellow Ladybugs and Aspergers Victoria

26. https://www.torrens.edu.au/blog/education/tbeing-proud-of-my-autism-how-penny-became-an-i-can-mentor
“My family (including my recently deceased Grandma) have been
extremely supportive of me growing up. Grandma lived in aged
care for the last 17 months of her life. When a staff member
came into her room while I was visiting, she’d always want to
introduce me to them: “My granddaughter,” she would turn to
me, “say what you do.”
It was equally important to her that I introduce myself as a
Lecturer at Monash University, as well as having me mention that
I’m autistic and give talks on my personal experience. She was
proud of me for both.”
Interview (via email written questions) published 21 June 2018

27. Resources
https://awegust.everydayhero.com/au/penny
• Grief Information Sheets (Australia) = Home » Publications » Resourced for the Bereaved » Grief Information Sheets
https://www.grief.org.au/ACGB/Publications/Resources_Bereaved/Grief_Information_Sheets/ACGB/ACGB_Publications/
Resources_for_the_Bereaved/Grief_Information_Sheets.aspx?hkey=19bfe37f-d79f-4e70-85e7-82b94bca248b
• Becoming Independent (music video)
https://youtu.be/v18BhgaAwxY
• Changing the guard of independence (2017 Spectrospective film submission)
https://youtu.be/CaMH6asy9HM
• Things I CAN do: Living Independently:
https://youtu.be/YMDHMf_c-nQ
• “I CAN” talk at I CAN Network Launch (23 Nov 2015) – the ONE talk Gma saw me give *live*
https://youtu.be/gEOLInRHu5U
• My journey to becoming Assistant Lecturer
https://youtu.be/FlwiQKiXslc
• Interview with Torrens Uni (done in written format, via email) – ended up being a tribute to Gma
https://www.torrens.edu.au/blog/education/tbeing-proud-of-my-autism-how-penny-became-an-i-can-mentor
• Article I wrote for Autism Awareness Australia, by invitation – reflecting on I CAN turning 5.
https://www.autismawareness.com.au/news-events/aupdate/the-futures-not-always-what-it-seems/