Welcome to another episode of This Is Your Journey
by the Specialist Learning Disability Service.
Today I am really excited and really pleased
and honored to have Danny O'Reilly, who is
a nurse in the Specialist Learning Disability Service.
I'll let Danny introduce her full registration as a nurse.
We are going to be talking about a subject which might be
quite sensitive to some of our listeners today
as we're going to be thinking about death,
grief, and bereavement.
it comes with a bit of a warning to be able
to say, to look
after yourself if you feel this is a podcast
that you would to listen to.
And it's if this podcast isn't
for you at this time to listen to.
take care of yourselves
as we enter into quite sensitive, but I feel a brave
and important conversation to have.
I am going to introduce Danny. Hello Danny.
Thank you much for coming to join me.
Could you start by sharing with us
your professional nurse registration please?
Yes. I'm a registered sick children's nurse
and a registered general nurse.
did the combined training a little while back.
, means I've brought that
to the team alongside the emotional
and mental health needs
of the children in young people in health service.
Thank you much. Yeah.
Danny's joined us in a senior community nurse position
and as Danny shared, to support our young people
with emotional and mental health.
What we know as I've shared in
other podcast episodes is we're really thoughtful about the
research and evidence that children
and young people with mental health,
their needs aren't always recognized in the way
that they feel they should be.
And this is why we, Danny is incredibly passionate about
thinking about grief and bereavement
and opening up these conversations for the children
with a learning disability.
On the 17th to 23rd of November,
it's Child Children's Grief Awareness Week
by their childhood bereavement network.
And this year the week's theme is sharing stories
and strengthening hope.
The statement is that we hope that many children
and young people feel isolated
and lonely, particularly during the initial time
after a bereavement.
We also know that bereavement does not define who they are,
although it can become part of their identity.
This year. We want to encourage everyone
to share a story about bereavement
because we're all affected by bereavement.
Grief is hard, but can also give a child
or a young person's insights
and resilience they can take through their life.
And that's why we want these stories to highlight, hope, to
recognizing that despite bereavement,
there are still opportunities and moments to celebrate.
We want to encourage children, young people, families,
services, organizations, practitioners, managers,
and anyone who supports a brief child
or young person to get involved.
This is your journey
and it's all about hearing from the stories who join me
and hope in the future.
This ties in with the year's theme
of Child Bereavement Network.
For our young people that we support,
we really thoughtful about ensuring that we consider them
and recognize that grief
and bereavement does affect them.
But how do we even start these conversations?
And that's where I'd to start with yourself.
Danny, may I ask, what is grief and bereavement?
How would you even explain it?
, grief is a collection of feelings, a powerful mix
of emotions that we have.
When someone or something important to us is lost,
this may be sadness, confusion, anger,
worry, or even relief.
And there is no linear set formula for how
that grief is set out.
But what we acknowledge is
that all these feelings are valid.
And then bereavement sees the period of time
after death when someone is grieving.
And these give a name to what we are feeling
we can find ways to seek and get that support we need.
it can be quite complex, very personal
and a process that helps us heal from that significant loss,
whether that be a death
or a loss in other ways that also causes grief that
Incredibly per and thank you much.
That was yeah, really, really beautifully per,
could I ask Danny, we are looking specifically for children,
young people with a learning disability
and we're thinking of the moderate severe
to profound young people who access our service.
And I wondered why do you think it's important for us
to be having these conversations for this particular
population of young people?
I think this matters to me and to our team
because children, young people with disabilities,
they're often overlooked in conversations about loss.
Sometimes it's assumed that
because they do not have the cognitive ability
to fully understand what grief means,
then they don't need to know.
However, we all know that at every level
when we have lost something
or when someone has gone, we experience this on all levels.
And I think it's to acknowledge
that their feelings are no less deep.
They may show grief differently
and need that tailored support that I do believe
that every child has a to that all this information,
supportive routines
and adults who really can connect with them
and support them with the loss of the person
or the thing that they have lost.
You said that Danny, about it can look differently
for children and young people with a learning disparity.
And I wondering very generally, what could
that possibly look for a young person, do you think?
Is it the same as somebody without a learning disparity
or do you think it can show up different
or there's a real crossover, A very individual?
Yeah, I think it's very individual.
, however there are some elements such as tears,
perhaps the sadness, the expression of that grief.
However, again, that it's very varied as it is for of us.
I think for our specific young people, perhaps
the changes that are more noticeable
are maybe in their behavior.
perhaps when there's , overshadowing of
our, that behavior is
because of it's, yeah, do we stop and listen
and hear what may be contributing to that behavior?
And it might be that there's increased anxiety,
more withdrawal sleep problems
and some skills that they may have once been able to learn.
They may regress a little bit
and their ability to be able to do them and
otherwise are changing appetite, different sorts of foods.
, yeah,
and again, through their body language, ,
I think young people generally convey
with their whole bodies about how they're feeling.
And for many of us, if we ask
or express our grief,
it's normally somebody else notices something about us
how we are presenting.
yeah, for them it's no different.
It's , I think really tuning in
and connecting with them, having that relationship
that identifies
and observes those subtle changes to get to know
where their grief may be for them
and how that is being expressed.
I think for me, a big thing was there, what you said is
even daring to consider
a behavior can be the surface level underneath
that can be grief or bereavement in no way.
And it's important for us to not, you said,
presume it's a behavior what's underneath.
And if there has been a death
or loss, a change in behavior, sleeping,
eating is what you said.
There's being careful not to overshadow
and go, it's a behavior , you said,
being curious enough
and recognizing something significant may have happened
but it's coming out in a behavior way of maybe distress
or anxiety or lack of sleep.
And it's being mindful that they likely have been affected.
Yeah, definitely. Yeah, something that's very true
and I think that came up for me was about, yeah,
that connection, curiosity, I think curiosity comes up a lot
for our young people.
, being open and curious as to what is happening
for them and again, that understanding of
how they are conveying their grief.
it may be that the sadness, the emotions
that are being expressed, are they
how we understand our emotions
or are they expressed in a different way?
I think it's, that's where the relationship
and that connection is really important.
Do you think that it can be difficult
for people supporting children with a learning disability to
think about grief and bereavement
and there might be a want to protect them
therefore not opening up this conversation
about grief and bereavement
and what I'm thinking protection.
But is there other things you think sometimes parents,
carers or people around the young person may find difficult
to start thinking about grief and bereavement with them?
Yeah, I think there are some barriers to expressing
and exploring that grief
or the barriers to the grief support for our young people.
I think there's, I said mentioned
before, belief that they don't have the ability
to fully understand.
maybe that's where do we need to share that Also
we said before, the different ways of communication,
the sounds that somebody may make their body expressions
and the fact that if we share
being aware of our own emotions,
that we don't want young person
to feel the emotions that we are feeling.
It may be that they become dysregulated,
that the behavior shows in other ways
and for that reason it's , ,
we must keep everything
that they can manage those emotions.
we denied them the opportunity to learn
or hear about the loss, the fear of becoming dysregulated.
In your experience of working with young people,
and I'm thinking this would be a good time,
I apologize I didn't, you've done specialist training,
am I correct in brief
and bereavement with children, young people
with a learning disability
or as is now being also , intellectual disability?
Am I correct with that Danny?
Yeah. Yes. I've had the opportunity
to access some training specifically for the needs
of the service users that we see we work with.
that's been very, yeah, supportive.
What difference where you have worked with young people
with a learning disability
or intellectual disability would you say by doing the grief,
excuse me, the grief and bereavement work again,
I appreciate we can talk generally
but on your reflection work, have you seen benefits
of being able to say, I see you, I hear you
and I am going to, if you are ready to acknowledge grief
and adapt to ways to be able to support that young person?
Yes, I think by working and I think that trust
and that therapeutic relationship
and that connection a past
that's even more important with our young people
because we have to get to know again how they express
that what's that look for them has that emotion
for them and also from a very sensory based
, experience of grief and being able to support that.
it might be, I know that , some questions have come up
for , families around, for example attending funerals
and it's , will that be too much?
Will they understand? Is it appropriate that they're there?
And I think those conversations
with our young people finding out ways
that they can be involved in the ritual as well,
there's that grief ritual, that death ritual
that they become a part of.
it may be that they enjoy singing,
can they be joining the singing element that's from
that musical element
or it may be that they're ,
oh the flowers are too strong, there's too overwhelming,
there's too many people or how could that be managed?
it's mitigating those things that become barriers
for these young people to access
and really exploring for each individual how that can be,
how can we adapt that they can be part of
that bridge process
and that part of the feeling. For example,
What I hear from what you are saying Danny,
is it there isn't this exclusion, it's about
how do we adapt, how do we bring that
to the young person?
that's what comes through very clearly to me is about
how do we, but they're going
to feel it in whatever way they experience
grief and bereavement.
it's about how we do that
and they have the to be able to
and the support should be there in a way that we adapt
and tailor for them.
Yeah, I think also, yes,
how will we raise our confidence I think in having
those conversations.
I think that's why part is having this podcast is to
initiate those conversations to say it's .
And also we're there to support each other in that.
And I think people often focus on the person who's died,
which is understandable
but also for our young people, other ma losses matter too.
Within that, that loss of that key person, the loss
of familiar activities, whether there's loss of routine
or changes to say respite arrangements
or with a loss of a pet, that loss of that comfort.
it's for children with sensory routine needs,
losing a familiar place
or person can be especially destabilizing for them.
Does grief ever end do you think, Danny?
Is there a, in two weeks time you feel better
from grief or can it, is it something that can be learned
to be lived with do you think?
Is it not about, you can put a time on it when you are gonna
feel better
and can it ever resurface if you find you are
feeling differently about the grief?
Does it, can it come up again do you think for children
and young people that we work with?
Yeah, I believe that grief is anger
and it is our lives that grow around that grief.
That grief is always ways a part of us.
, there's the dual process,
they call it the dual process model where there's the loss
and the restoration.
initially when the young person experiences a loss
of any sort, then they are in that loss.
They are all encompassed often in that place
and then gradually moving over to the restoration process,
the restoration period.
things are elements that really connect them back to life
as it is that is meaningful for them as now.
But you go between the two as times are going through loss
and going through restoration
and I think perhaps some extra support is needed
for those young people, maybe particularly in our
service users that may become stuck in that loss
and need that support to restore again the lives
and activities they once had.
Yes. I believe it is that yeah, you're in each element
and transitions through life.
It might be birthday
or it might be later in life when there's an event within
the family and reflecting back
and that's when the emotions come up again that we've
or a place
or an aroma for particularly for our young people
who have very sensory based needs.
Mm-hmm Then it could be the smell
of something we can set that image
and that person again.
Do you think we should avoid those triggers
or do you think that we can't avoid
and once we've experienced that grief
and bereavement, you said, a nice,
we may you said, for the children,
young people might have a smell that comes up.
I'm thinking it might then come out as a behavior.
I suppose I'd almost answer my own question,
we can't avoid it, but is it about that awareness
and that cascading of information?
'cause that you said the birthday of the loss of a pet
or loss of the person is gonna be there throughout the
young person's life.
is it sometimes about is there a plan
or that we come aware we share that information
the young person might be distressed
and as you said about being curious
and thinking what time of years it
or was this something that might be re-triggered
that's causing this young person who may not be able
to verbalize or communicate in a way this has happened
but we are aware ,
you might need a bit more support tucked around you
because it's an anniversary, it's something
that's re-triggered maybe.
Yeah, I think for me that brings that two elements
I guess there's the thought around continuing bonds,
that's about maintaining that connection.
I think it's really important that those strong bonds
with people in their world and they're encouraged
and acknowledge the loss but foster that continuing bond.
For example, saying the name of the person that died
or when you're looking at photos, do you remember when
or going on a holiday and perhaps you have a favorite meal
or a favorite flavor as cream
and there's that bring that person
back into their world
that those bonds are always with them.
And again you were saying about significant times,
birthday celebrations, , turning
and thinking, oh I wonder what your brother would think
or yes.
I guess anticipating those times
that may have those important elements for that young person
but not avoiding them.
I think it is about, yeah, bringing those into conversations
and those bonds are maintained throughout
and with the plans.
I think if initially I know they're trying to be brought in
throughout to run alongside perhaps the HCPs in school.
How was that loss experienced? What did it look ?
When did it happen? Who was there?
What was supportive at that time or who
or the different elements?
And that can be a very sensory based care plan.
looking at, yeah again our different senses
and seeing what elements of those assisted with
that young person being able to be supported and feel safe
and secure through their grieving process.
And again, it may not be apparent at that moment,
however later on maybe a year later, years later
we can reflect back and see and go back to that time
and have that awareness
and those things can be put into place without having to
re-ask re-question rego over the information.
we have the knowledge.
Let's integrate this into plans whether it's educational
or life plans generally
For parents and carers.
Danny, do you think About their grief,
do you think, is it ever if a parent
or carer may get upset
and the young person with a learning disability may see them
or their sister or brother?
Is it to see them upset?
'cause sometimes we are talking about those triggers
and learning to live with grief and it wraps round
and we talked about recognizing times where
that grief may pop up and sometimes unexpectedly.
Is it ever to, oh mommy's had a tear or thought
or something and share Or in your professional opinion do
you think, oh we should hide that and go No I'm fine.
What do you think it, no, again, we're talking broadly
but do you think it's ever to share Mommy feels sad
because , I haven't got my dad or granddad
or my pet may have died and I remembered.
Is it do you think to ever share that as adults
or are we supposed to be, sometimes it could be
British and stoic.
I think modeling the good grief if you ? Yes.
Is very supportive for young people.
They're able to see in context
and be able to accept their own grief too.
And I think in that way that support
that acknowledging
and naming that emotion, you were saying,
I'm upset because I feel sad because,
or I feel angry, I feel frustrated, I feel yes.
I think modeling our emotions
as adults is very supportive for young people.
And then perhaps asking them
or showing them using their ,
preferred means of communication.
Is this how you feel?
And it may be the same
or similar, it may be something different.
But yeah, being open to have those conversations
and again, , giving validity to everything
that is experienced.
What do you think Danny, by having these conversations,
what do you hope will start the landscape of changing?
I wonder when you first started this, have you seen a
Shift in
Things starting to change
and recognize for children, young people
with a learning disability
that we are recognizing it more.
You starting to see that we are making a difference by
you accessing the training, these conversations.
Do you think there is a shift that we're seeing positively
around grief and bereavement?
Yeah, again, I think it's , kind
of two areas in the sense
of having the conversations initially with all children
and parents being able to speak
or even touch on with sensitivity.
The area of grief and bereavement is very supportive
and with the knowledge that we all share that together
I think by saying you are not alone in your grief.
And I think that is great role of us to be able
to say enough of that.
And I think in that way that relieves perhaps
perhaps the loneliness of that for some families
that there are others
and that also professionals that can support
those people are not alone.
And , yeah, being aware, I think having
that awareness, that curiosity of what
that grief may look ,
I think it may be easily overlooked by not having
that information initially.
Not because people want to, but that natural.
Yes, unaware of not realizing
that this may be safe for these young people
In the theme of the child bereavement network
and hope, do you think there is hope for children
and young people with a learning dis dispute?
You experience grief and bereavement
and either that life can be hopeful
and joyful again for them.
Do you believe living, as you said, grief doesn't disappear
but you build round and find that life.
Do you believe that's the case for children
and young people with a learning disability?
If we acknowledge grief and bereavement
and what they're experiencing, it doesn't mean
that they won't have hope.
if we went, if we don't acknowledge it,
they'll be if we acknowledge it
and well they validate that.
Does that mean they can still have hope of the future?
That can be joyful and happy too
'cause it might come really affected
and that might worry parents and carers
'cause know we've talked about it now they're unhappy
and will they be afterwards.
wondered your thoughts in that hope theme.
Yes, I think it's being understood.
I think the hope for the young people is by understanding
who they are, their communication, how they experience
that loss gives them hope for the future.
I think it does enable them to return to some
of the activities but not losing connection with the person
or the thing that has been lost.
And I think that is where that joy for these young people,
maintaining those routine, maintaining those familiar things
and maintaining what they , enjoy
what their sensory needs are in relation to that.
And it may be a comfort cushion
or a pill to sleep on that connects with that person
or a memory box
or some be that they put together for those memories.
And I think that's when having those continuous bonds
that allowing that grief
and restoration period can enable these children
to thrive And as families find their way towards hope again,
What has this journey that you are on, Danny taught,
started to teach you what you didn't see maybe
before you started this training
and the incredible work that you are
Doing, May she ask, ask
and only ever feel comfortable what you feel
but wondered what it's, has it changed you?
Has it shaped you differently from when you first started
this journey do you think?
As a nurse
I think it's enabled deeper,
stronger connections with people.
, and it's made me realize
the value to a greater extent of
that trusting therapeutic relationship
to know if we have those connections, if we build
that trust, then that is where our truth can come through.
And by speaking our truth and acknowledging our feelings
and yeah working with that personally,
then we can support those of our young people and families
and caring for ourselves too.
amongst that is how does this fit for me?
Am I caring for me?
In which case, , then I can support families
and young people and the same for other professionals
and other families.
I think it's being able to have those open conversations.
I guess it shaped me in the courage to share
and the courage to be open with others
and to receive them at a deeper level.
yeah, I feel I've grown in a sense of
how nourishing and how beautiful this journey can be if we
can be held and supported through it.
Wow, that's beautifully put.
Thank you for sharing Danny, there is much I wanted to
ask and talk to you about in this episode.
What I'm thinking is, is I'm going to
ask Danny very kindly if she may come back
and offer us another episode.
I haven't asked Danny I'm gonna put her on the spot
here while we are doing it
because there's much I want to talk to Danny about.
But I think what I'm gonna do is keep it focused
where we are today and ask Danny to come on
because I think there's many spokes with bereavement
and grief that I'd to ask Danny to give more
specialist time to be able to share with us.
, and for the listeners.
But what I want to do
before we start thinking about the closing areas
with Danny is Danny's doing some incredible work with some
of the bereavement charities
and I wanted to be able for Danny to have space
to share that because
as Danny's reflected on about making things
and resources adaptable
and we are hearing that young people
with a learning disability in their own
need that acknowledgement.
And I'm very thoughtful of siblings too
and that's why I'm thinking another episode would be really
good 'cause we're taking in the whole family.
But thinking, Danny,
what's the incredible pioneering I would call the work you
are doing with charities in Devon about bereavement?
What are you bringing to them to open up resources
for children, young people with a learning disability?
I think it's bringing an awareness
of our work within our team.
how we've been working and supporting these children
and families, how we've highlighted
that accessible communication changes everything for them,
really accesses their world, those visual supports,
social stories, sensory planning,
they're not optional extras, they're essential to life.
These young people and I guess I learned about family
systems are change after a loss
and how services need to be flexible and passionate
and it allows me to acknowledge how the resilience
of families is really important
and having that community based support.
And I think by working in conjunction with the challenges
that exist already, we can support them
and they can support us
and we can acknowledge where those, if you , one
of bed word gaps are in supporting these young people
and they can share with us the resources that they have
and we can adapt them to meet the needs of our young people
that it's important. That
Is Well, and what I love there is
that you said essential Danny, this isn't an option.
you said, every child has that
and you are part of making that happen.
The part now that we look at when I am privileged to have
, professionals, parents, carers, young people
who will be coming on the podcast is thinking about
words that you would to impart.
And that's what I'd to ask you Danny,
do you have some words you would to be able to offer
to any parents
and carers who have been able to listen
to this podcast today please?
I think the words, yeah, I'd to share, ,
when supporting young person learning
or intellectual disability through grief.
I think it takes time, trust, and connection.
And I think it is, you mentioned
before, it's about being alongside them with care,
curiosity and compassion.
Sometimes with words,
but sometimes simply our presence.
But as children need care, parents
and carers need to care too.
reaching out for that support we're sharing here
is not a weakness knowing it's our strength
that support is our strength.
We cannot pour from an empty cup.
And parents, carers,
professionals all deserve the same compassion
that they give freely to others.
I think it's taking a deep breath, being gentle
with yourself, take moments to talk to rest
and supporting a grieving child begins
with a cared for adult.
And I think together with our learning disability team,
being here for you to walk alongside you, to listen
and to keep developing ways to support children, families,
and professionals through grief
and loss that we can help young people and find
and families find their way towards hope again. Wow,
That is, yeah, they're quite emotional listening to that I
that's most beautiful, well thought, considerate,
validating words that you have chosen to describe an area
that can be incredibly difficult
and heartbreaking to navigate.
Thank you. May I ask Danny, have you got any words
for professionals who may be listening
and may have found themself in this
journey with a young person?
And again, I appreciate we are not giving individual advice,
it's board, but your thoughts that you could share.
We would very much welcome.
I think much at the beginning of that is about that care
for likely express for others.
care for yourself and care for your team
and the others within it.
And I think it is very important
and I think particularly land disability nurses tend
to do well because it's that listening first.
It's, we are not going to be able to fix that.
It's not what we're here to fix, we to fix anything
but to understand.
And I think it's using clear concrete language,
visual supports that will make that difference.
And making a simple shared grief support plan, the things
that are essential to that young person
and prioritizing your own training resources
but mainly looking
and caring for yourself that you can be there for others.
Yeah, again, thank you Demi.
I think that, yeah, gives confidence
to me if I was a professional listening that it's ,
it's one about looking after yourself,
but two, I the sense of the grief plan.
We're acknowledging and we're thinking what we can do.
I'd to finally close by the most I,
well the most important, we all important,
but you , we keep our children
and young people at the center
and I would love to hear Danny, for the children
and young people with a learning disability
who may have tuned into this podcast,
what would you to say to them?
Danny, what would your message be to them please?
I think it's that they do not have to do this alone.
, that together, all of us, by leaning on love, support,
and compassion, that they can carry their grief
with safety and meaning.
And I think for the children to know that they are loved
and it's to feel sad or confused
and that the people around you will support you and help you
and guide you and hold this as you process your grief
and your journey forwards.
Wow. I can't thank you enough Danny, for all
that you are bringing for you to be able to have shared
much with in this podcast episode.
For someone who has experienced
and lives with grief, I am incredibly grateful for
what you do and there is a comfort I can feel in
how you talk and that support
and I'm incredibly passionate for the children
and young people we have in being able,
as you said at this beginning, making sure that we validate,
we hear that we support, we love, we connect
and we support the families, the carers around them,
the professionals as you said, have the confidence
to be able to go in and be there and be present
and alongside grief and bereavement.
And thanks to you Danny, coming on,
we've opened up a conversation that may not have been
possible without this podcast and yourself.
I'd say thank you, really would you
to come back on and think about some specialist areas.
We might have some of our listeners
who may have areas they'd to consider with you.
I know you've kindly shared that you'll be able
to share some resources, , which we'll go on our website
and what would you finally,
I said finally I said finally again a real final
after someone's maybe listened to this podcast,
it may have brought up some emotions and feelings.
What would you say, Danny, to
whoever in our podcast world has listened today,
would you maybe give some advice
to maybe think about if they need to take care of themself
and it may have resurfaced some feelings,
you got some words of advice you may offer.
I think it's about reconnecting with the things that are
of value to you that bring you comfort for them.
That compassion care kit, are there some things
that you can find around you often associated
with the senses that bring that softening
and being able to talk to somebody that you trust as well.
Being able to share that, to know that you're not alone
and to have those conversations
as feels comfortable for you.
Yeah, taking that time out, whether it be
outside in nature, taking a breath, taking a pause in life
and knowing that there are people
and we can put those links to resources
and to, , websites that can support you further if needed.
it is, yeah, taking care, taking time,
taking a breath, and being with how you are
and acknowledging that.
Yeah, I keep saying thank you. Fun. Thank you.
Thank you much Danny.
And I really look forward
to you joining me on Future podcast where we can maybe
deep dive a bit more into other areas
and how we can support.
'cause I found you incredibly helpful
and thought provoking in
what you have shared. thank you.
No, thanks. It's been a real honor.
thought to be able to share that with you too, Janice.
I appreciate that. Thank you. Thank you.