Posts Tagged ‘Support’
Caileigh – Advice to my younger self about grief
Caileigh – Advice to my younger self about grief
Caileigh talks about things that you can do to balance out feelings that it’s okay to experience all of the big feelings that you have, to find joy in little moments, and to find ways that you can cope with those big feelings.
Alongside
By Mike Bonikowsky
Grief is the great leveller, and the great divider. Everyone grieves, sooner or later, but no two people will experience it in the same way. No two bereavements are the same, and neither are any two consolations.
This is only more poignantly the case for people with developmental disabilities. Not only is their grief completely unique, but they are often unable to express it in traditional ways. How are we to support someone through the grieving process when they cannot, or will not, tell us what they are thinking and feeling about their loss? The answer is simple, and difficult.
In Christian theology, there is a concept called “the Holy Spirit”. This is the invisible piece of God that is everywhere all the time, with and within all people. The name given to this in the original ancient Greek is the “Paraclete”, literally, “The one who comes alongside.”
That is also our best, and only role, when supporting a person with a developmental disability to grieve. We must be the one that comes alongside. There is no closer place we can get to. We must be present, be with, perhaps not understanding or comprehending what the person we support is experiencing, but alongside them nonetheless. We must be there, ready to provide whatever we can discover of their unique need in grief.
But that coming alongside must begin before the bereavement. We must already have been there through the happier seasons of the person’s life, if we are to know them well enough to read the language of their grieving, and hope to know in what little ways we may support them. Supporting a person with a developmental disability to grieve is not a matter of coming alongside, but of remaining where we already were. It is a matter of knowing and being known by them, of being trusted. It is not so much a matter of doing anything for the person, but of being something for them: A safe place, a consistent and reliable presence. It is to be a fixed point in a confusing, chaotic world, someone of whom they can say: “When that person is here, I can expect things to be like this.” Only when this relationship is present and well-established in the ordinary times can we come alongside in the darkest, loneliest season on the person’s life, and hope to meet their unspoken needs.
And usually the answer to those needs is what it has always been: To simply be there with them, to prepare a meal for them and do the dishes afterward, to help them wash body and find clean clothes to wear. To open the curtains in the morning, so that when they emerge from the dark cave of their unique grief, for however short a time, they are greeted by a world that has not ended, and a face that they know, and that knows them.
Betsy – You can’t know until you know
Betsy – You can’t know until you know
Betsy talks about support and what really helps when one is in grief
There One Day and Gone the Next : Art Therapy and Grief
By Sarah Smith DTATI, BFA
Over the last 12 years or so, I’ve had the opportunity to work with those grieving individually and in group settings, which has provided me with experience and insight into how art therapy (and art as therapy) can be beneficial to those dealing with loss.
What is Art Therapy?
“Art therapy combines the creative process and psychotherapy, facilitating self-exploration and understanding. Using imagery, colour and shape as part of this creative therapeutic process, thoughts and feelings can be expressed that would otherwise be difficult to articulate,”(CATA, 2022).
There’s no right or wrong in art therapy, it’s a matter of using the art as a vessel for wellness along side a trained professional. There are many benefits one can receive from engaging in the art making process such as: healthy coping strategies, insight, emotional stability/balance, stress /anxiety reduction, grounding of emotions, pleasure/joy, creativity, safe space, expression, control, freedom, and connection among many others!
Art Therapy and Grief
Grief is a very layered and challenging thing that is unique for each individual who experiences loss.
Because there is no “proper” way to grieve, art therapy can make for an excellent coping strategy as it allows for each person to express themselves in the way that’s best for them.
Unlike traditional “talk therapy”, art therapy has the art, so this means that one does not need to speak if they don’t want to or if they cant find the way to articulate how they feel into words. Sometimes, while people are grieving they cant even pin point how they feel and at other times the emotions can just be so overwhelming it can affect one physically and to try and talk about the emotions just exacerbates them.
Creating art in itself can be a healing thing. It can be a fun or relaxing thing to do. Engaging in an art therapy session can allow for so many more benefits. The art therapist can provide the participant with specific art therapy directives and art materials that they feel may be beneficial to your needs. Art therapists are trained to read and assess clients’ artwork. This means they may see things you may have missed that you might benefit from if brought to your attention. This insight makes it a great learning tool for self-discovery. We as art therapists believe that the art work holds the subconscious. What’s great about this for those who are grieving is that people can process however they need to. Some people need more time to process, some people need a more gentle approach where they feel in control, some people refuse to acknowledge things, and some people are just going through the motions and engaging in the art making process. The subconscious is purging and the healing is happening whether they realize it or not.
Art Therapy Directives (examples)
I facilitated a workshop at a hospice a couple years ago and offered it to those who had lost a loved one. The workshop began with a few art therapy warm-up exercises with the intention of helping everyone feel a bit more comfortable in the space and with each other.
The first art therapy directive I had them do was make flowers out of coffee filters, markers, and water. I wanted them to make something symbolic for their loved one. They began by writing whatever they wanted onto the coffee filters. Some people wrote the persons name, poems, a memory, or even drew a picture. They then watered down the filters and the colours began to bleed. Some people cried during this part. They could resonate with the symbolism. The water like tears. The bleeding of the colours representing pain, fuzzy memories, and a distant grasp on the person. When the coffee filters had dried we had turned them into flowers. The transformation of taking what we lost and carrying it forward in a new way was very powerful to witness and a very healing thing to say the least.
The second art therapy directive was focused more on the individual rather than the deceased. I gave everyone a mask. I instructed them to paint the front of the mask how they appear to the world and I asked them to create on the inside of the mask to show how they really feel or how they are actually doing (see figure 1).
Figure 1.
They shared their art work from the workshop, but it was heavy. They were feeling sensitive and tired among other feelings so I had them sit and talk for a bit and then had them pull a self-care card for a distraction before letting them and drive home, as it may not have otherwise been safe for anyone overwhelmed after such an engaging session. This is typically how I run a grief workshop. Before they left the hospice asked them to fill out a score sheet to see how they felt about participating in the workshop and everyone said they liked it and for reasons, such as that they felt less anxious, they felt less alone, the felt lighter and more hopeful after the workshop.
At another hospice art therapy workshop, I had them create memory boxes. I provided them with a wooden box along with a variety of art materials, the only thing I asked was that they brought in a picture of the person they had lost. The purpose of this was to give them an opportunity to create something that could hold two energies, a place to honour them deceased, but also something tangible for them to have and hold. From my observations, I remember them taking a lot of time on these boxes and they were very quiet while making them. When they shared them, they were emotional, of course, but pride came through, it was like they made them for their people and wanted to make them well, so that their loved one would really like the box. This made them feel good for reasons such as honouring the person still while they are gone. Some people felt that their guilt had been eased a bit because they were physically doing something for that person who was no longer here. To see an example, see figure 2 and 2b.
Figure 2
Figure 2b.
Following the memory boxes, I had them paint a step by step painting for their loved one. This was more of an art as therapy approach. This means they were literally using the art itself for wellness. They followed along with me and painted a whole painting. By following me, they were able to safely let go and get lost in the art making process. The intention was to enjoy the process while also giving them a healthy mental and emotional escape for however long it took us to paint the picture. I selected a picture of trees that had no leaves, purposely to symbolize letting go, loss, and reflection but the painting had an element of hope to it, the tress were pointing up to the sky, facing the light and there was lots of colour (see figure 3).
Figure 3.
The photos below are some examples of art from some of my sessions with clients around grief. They speak for themselves.
Figure 4.
Figure 5.
Shannon – Power of Presence
Shannon – Power of Presence
Shannon discusses how just showing up, being present is a powerful way of supporting to someone who has lost. Listen more – talk less.
Shannon – Enough
Shannon – Enough
Shannon talks about us all doing the very best we can from the perspectives of a licensed clinical counselor and losing her husband to suicide.
Cara – The real issues for grieving people with intellectual disabilities
Cara – The real issues for grieving people with intellectual disabilities
Cara provides some context for the real issue of grief in the lives of people with intellectual disabilities and those supporting them, including that we consider that there’s not a lot of education or information out there about how best to support someone with an intellectual disability who is grieving.
Cara – My story with intellectual disabilities and grief
Cara – My story with intellectual disabilities and grief
Cara talks about how she came to see how people with intellectual disabilities need to be supported in grief
Grief and Parenting in the Disability Community
By Carrie Batt, Grief Educator
Parenting is complicated as it has so many twists and turns. There are a variety of parenting styles such as hovering, free and easy, and everything in between. The one thing parents have in common is the fact that parenting never ends, thought it changes. Many parents can look forward to their child changing as they age and gain independence. Parents often look forward to and are proud of their child leaving the nest. Yet for many parents with children who have developmental disabilities, that is not the case. These parents must offer unwavering support, care, and guidance to their child or children who live with disabilities.
These are parents who are relied on in various ways, being the primary caregiver and managing everything. Some parents aging into their 70s, 80s, and 90s remain the sole primary caregiver to their child. Their day-to-day parenting tasks have never ended as their child has grown into adulthood. In fact, for some, their parenting roles increase as their child ages and may begin to lose daily living skills, develop early-stage dementia, show signs of aging or illness, begin to regress in specific areas or require much more support. Some parents must also cope with the fact that their child may be experiencing mental health issues in combination with a developmental disability. This is a most unique parenting experience as it is all-consuming. Such parenting speaks to a level of commitment and unconditional love where unwavering support is a constant.
In conjunction with these realities, there are times when such parents become a part of the end-of-life and palliative care communities. Once their child with a disability is diagnosed with a life-limiting illness, the only choice is to navigate end-of-life care, and there is no road map for what these parents will be embarking on. When it comes to death, dying and disability there is no education or expertise readily available. The same is true for grief, loss, and disability. Currently there are few disability-sensitive supports for such families who are having to transition from being the primary care giver to preparing for the impending death of their child.
The grief surrounding these realities have yet to be spoken of or integrated into the bereavement services and are rarely acknowledged within the developmental sector. The same is true of the reality faced when a child with a disability must face to mortality of their parents and primary caregivers, as for many of these children they may never have left the family home.
This is a type of grief most cannot imagine. This type of grief has not yet been recognized, validated, and honoured. There has been no space made within our grief support services that speaks of the magnitude of the grief surrounding these families. My hope is that the light can shine to meet these needs in the developmental sector for the families we serve.
Grief and Disability: Carrie’s Story
By Carrie Batt, Grief Educator
My son says I am a mover and a shaker. He tells his friends that because of my extensive travels abroad and my volunteering. When his friends ask: “Why did she do that?” he always tells them “Because my mom believes that ‘anything is possible’.” As I look back on my journey, I know where I picked up this motto. When my baby brother was born, the doctors told my parents: “he will not walk, talk, nor know who you are”. From that day on my parents embodied that motto ‘anything is possible’ and in the end my brother does far more than walk and talk. This circumstance introduced me to the disability community knowing that people with disabilities deserve and can do more. Interestingly, I have had the privilege of working within the developmental sector in a variety of positions for more than thirty years.
In 2018, I added to my parents’ motto ‘anything is possible’ and included ‘everyone is worth it’. I added those words to the motto right after I had attended a kintsugi workshop offered by Rami Shami, a prominent member within the deathcare community. As soon as I realized that Rami had spent the last 30 years caring for the dying. I inquired about his experience in death, dying and disability. Rami unfortunately, had no experience in supporting people with a disability who were dying. Upon learning about the sheer lack of support and expertise on this topic, I proceeded to complete the end-of-life training with Beyond Yonder Community Deathcare program. Soon after, SEOL Care was created, which offers a disability-sensitive approach to death, dying, and disability.
It has become clear to me over time that we have much work to do to ensure the delivery of disability-sensitive grief literacy and grief support. In March of 2022 my proposal for four 1-hour sessions was approved, we provided the program for 20 participants. My heart was full in each session.
My heart remains full of hope that conversations, education, and expertise about disability sensitive end of life care and grief support will gain momentum as more and more people join in on this vital conversation.
Currently, there are several rays of hope that suggest grief education and support can and will be offered in a more inclusive way. As a certified grief educator, I now offer online disability-sensitive grief support services for individuals and groups. My employer is offering disability-sensitive grief literacy sessions. The Bereavement Ontario Network has shared information through their newsletter and in a network webinar, where the gentleman I support and I were the guest speakers. Bereaved Families of Ontario have been receiving multiple requests to provide grief resources for the neurodivergent community. Additionally, Bereaved Families of Ontario are seeking out speakers with lived experience related to grief and under-represented communities for their grief literacy series. I remain grateful knowing that these are hopeful times, and these examples are a positive step in the right direction.
Birthdays, Anniversaries, and Other Special Days
Rachel Herrington – Social Service Worker Graduate, Third Year Psychology Student, Equal Rights and Community Advocate
It has been 10 years since my grandmother passed away and it never fails, every year leading up to her birthday I spend weeks with a pit of sadness and remorse in my stomach. I spend my days feeling this way and not understanding why then something makes the date catch my eye and it hits – It’s her birthday.
When we are grieving, some days are more difficult than others. Grief comes in waves like the sea and can feel like an intertwining labyrinth of emotions. Birthdays, anniversaries, and special dates that are associated with our loved one who has died can contribute to more emotionally intense days which can be worsened through the anticipation and “what ifs” of the upcoming day. These difficult days can leave us feeling defeated and it can almost feel like we’ve taken two steps backward in our grieving process, but grief does not have a timeline, and these feelings of setbacks are opportunities for healing.
Before the Day:
Communicate and set boundaries with others – think about how you want to approach the day and share your wants, needs, and desires with others. Clearly communicating your wants and needs with others will allow the opportunity for you to set the expectation for the day which can help relieve the intense feelings of anticipation.
Remember there is no right or wrong way to celebrate special days – It is important to remember that there is no right or wrong way to grieve and there is no written code or rule on how these special days are to be approached. However you decide to approach the day is the right way.
On the Day:
Allow yourself the opportunity for space from others – it is important to allow there to be an opportunity for you to step away and have a safe space to feel your emotions if you need to. If you are attending someone else’s home for the occasion plan a way that you can step away or leave with ease if you need to.
Find something that grounds you when intense emotions arise – if intense emotions are arising it can be helpful to find something to help ground you in the moment. This could be a physical item such as a small trinket in your pocket that you can hold, squeeze, and focus on in your hand, or it can be through positive mental imagery, deep breathing, and/or stress relieving acupressure, etc.
Take deep breaths – practicing deep breathing can help reduce stress and can increase resiliency during highly emotional or stressful situations.
If things don’t go as planned, that is okay – grief is a process with no timelines or set of rules, and sometimes things do not always go the way we plan and that is okay. Allow yourself time, patience, and understanding while you adapt to living with your unique grief experience.
Jacqueline – Advice to Younger Self
Jacqueline – Advice to Younger Self
Jacqueline talks about seeking help and being kind to yourself