Mathys Roets - In My Lewe

Understanding self within the framework of a unique journey

Parents with disabled children

By Annie Cantwell-Bartle MAPS, Honorary Research Fellow, Royal Children's Hospital, Melbourne and psychologist in private practice

Contemporary research on parents of children who have a disability live with many difficult issues and frequently experience trauma, loss and stress.

Parents live with loss

Where there is trauma there is also loss, although the literature tends to separate these two phenomena. Parents of children with a disability are likely to experience many concurrent losses. The first loss might be the diagnosis, which shatters the parents' worldview that they will have a normal child. Parents need information in a staged process so that they can start to assimilate the news, and need to feel that the professional who delivers the news is sensitive and supportive (Cantwell-Bartl & Tibballs, 2008). Grieving is an ongoing feature of raising a child with a disability. Parents experience grief over time and often have intense wishing for what might have been.

As well as the grief of diagnosis, parents of children with a disability are likely to experience many secondary losses which continue to unfold. For this reason the loss experienced by parents has been termed cumulative or non-finite loss (Bruce & Schultz, 2001). For example, parents could grieve over the child's lack of achievement of developmental, academic and social markers, and ongoing stigmatisation. Parents are likely to also grieve for themselves and the lost opportunities for personal growth and achievement, as every aspect of their life may be threatened and changed. They are more likely to be socially isolated as friendships change, and extended family can withdraw in response to the child's disability.

The grief of the parents is complex. The literature on loss tends to focus upon bereavement, but bereavement is centred on a single loss. Although stage models of grief are still employed, perhaps a more appropriate model is the Dual Process Model (Stroebe & Schut, 2001) which, in contrast to a staged response, is open-ended and allows for people to swing between confrontation and avoidance of the loss in order to maintain stability. Denial may be appropriate, for example, a belief that a child may walk one day may give a parent hope and extra resources, and allow time for the parent to adapt to a devastating diagnosis. Parents need to be able to speak openly about their experiences, and to speak of their sorrow and other intense feelings such as guilt, shame, disappointment or anger.

Parents live with stress

Parents of children with disabilities juggle many stressors, such as multiple health visits and consultations with educational specialists, and may be dealing with other family stressors including sibling difficulties. Siblings may also experience stress and their needs may go unnoticed, or they may have challenging behaviours as a response to their feelings of sorrow or anger. Parents are likely to be confronted with limited support resources in the community and long waiting lists, or they may encounter unsympathetic health professionals that they have to struggle with to access resources. As well, many families of children with a disability are economically strained as mothers may not be able to return to work and there are extra expenses in supporting the child.

Many children with disabilities have challenging behavioural disturbances or complex physical needs which can place an enormous stress on families. Some children with disabilities also have psychological maladjustments as a consequence of their disability or treatment. Health professionals often do not understand the complexity of these families' experiences and the huge demands involved in supporting a child with a serious disability.

In spite of the many difficulties associated with caring for a child with a disability, parents often adapt and develop a great deal of resilience in response to their care demands. Many parents develop skills and strategies that they never could have imagined if their child did not have a disability. It is common for parents to say that they have become more compassionate, and some parents become more focused upon what gives meaning in living. Most parents care for their children faithfully and with great commitment, and speak of the many joys in this work despite the difficulties. These trends towards adaptive responses are consistent with the phenomenon of ‘posttraumatic growth' (Tedeschi & Calhoun, 2004). This is defined as the experience where people have positive impacts after a negative event due to strengthened perceptions about self and others and the meaning of events.

How people can assist

Parents need to feel supported and to have opportunities to tell their stories without censure, so for instance a psychologist who is empathic can be deeply therapeutic. Parents may also need to speak of their hardship and their ambivalent feelings towards their child, in the awareness that there will be few people with whom these ‘secrets' can be shared.

 

Parents become adept at pushing down their needs because the child's needs are dominant and they fear nobody wants to hear about their own experiences. People can be mindful that parents may experience both traumatic symptoms and grief in response to many losses. Empathic listening can also reduce the parents' traumatic arousal and assist parents to feel less isolated in their loss and stress.

Parents may also be supported with resources, their capacities and their adaptability in caring for their child. Many parents need to be acknowledged for the courage and loving that is manifest in the care of their child.

People also need to be mindful that parents need advocacy from health professionals who understand their situation because the barriers and the difficulties in negotiating support structures can be exhausting. People should also be aware of the wider inadequate systemic supports for parents and to advocate for more generous social and financial resources for these parents.

Understanding the experience of parents of children with a disability

Parents need time to tell their stories and to have their feelings validated, as these are often suppressed in order to maintain the daily rhythm of care.

Fathers' and mothers' grief may manifest differently. One of the parents may find it harder to speak of their feelings and may need practical strategies where they feel in control, whereas the other may need to talk more about their feelings.

Grief is likely to be complex involving many secondary losses. Parents may experience trauma as well as grief. Other people's reactions to the child with the disability may be a source of secondary loss and trauma.

https://www.psychology.org.au/inpsych/assist_disability/

References

Bruce, E. J. (2000). Grief, trauma and parenting children with disability: cycles of disenfranchisement. Grief Matters: The Australian Journal of Grief and Bereavement, 13(2), 27-31.

Bruce, E. J., & Schultz, C. L. (2001). Nonfinite Loss and Grief. Baltimore: Paul H. Brookes.

Cantwell-Bartl, A. M., & Tibballs, J. (2008). Place, age, and mode of death of infants and children with hypoplastic left heart syndrome: implications for medical counselling, psychological counselling, and palliative care. Journal of Palliative Care, 24(2), 76-84.

Landolt, M. A., Vollrath, M., Laimbacher, J., Gnehm, H. E., & Sennhauser, F. H. (2005). Prospective study of posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. Journal of the American Academy of Child and Adolescent Psychiatry, 44(7), 682-9.

Landolt, M. A., Vollrath, V., Ribi, M., Gnehm, H. E., & Sennhauser, F. H. (2003). Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. Journal of Child Psychology and Psychiatry and Allied Disciplines, 44(8), 1199-1207.

O'Neill, M. M. (2005). Investigation of the prevalence of posttraumatic stress symptomology in parents of children with disabilities. Kentucky, US: Lexington.

Stroebe, M. S., & Schut, H. (2001). Meaning making in the dual process model of coping with bereavement. In R. A. Neimeyer and R. A. E. Neimeyer (Eds.), Meaning reconstruction and the experience of loss (pp. 55-73). Washington DC: American Psychological Association.

Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: conceptual foundations and empirical evidence. Psychological Inquiry, 15(1), 1-18.

 

Rend Collective - My LightHouse (Lyric Video)

A new day - 27 May 2014

2 Sa-9:3  The king asked, "Is there anyone left from the family of Saul to whom I can show some godly kindness?" Ziba told the king, "Yes, there is Jonathan's son, disabled in both feet."

2 Sa-9:13  Mephibosheth lived in Jerusalem, taking all his meals at the king's table. He was disabled in both feet.

2 Sa-19:26  "My master the king," he said, "my servant betrayed me. I told him to saddle my donkey so I could ride it and go with the king, for, as you know, I am disabled.

Job-29:15  I was eyes to the blind and feet to the disabled,

Isa-35:6  Disabled men and women will leap like deer, the voiceless break into song. Springs of water will burst out in the wilderness, streams flow in the desert.

Mat-11:5  The blind see, The disabled walk, Lepers are cleansed, The deaf hear, The dead are raised, The wretched of the earth learn that God is on their side.

We are all disabled – but we are set free by the grace of God through the blood of Jesus. Jesus our Caregiver, our Strength, Jehova Jireh – our Provider!

Today is a new day, today is a new beginning – all is well…

Grace

I was lost when You found me here
You pulled me close and held me near
And I'm a fool but still You love
I'll be a fool for the king of love
He gave me wings so I could fly
And gave me a song to color the sky
And all I have is all from You
And all I want is all of You

It's grace, your grace
I'm nothing without YouYour Grace, Your grace
Shines on me

And there've been days when I've walked away
Too much to carry, nothing left to say
Forgive me Lord when I'm weak and lost
You traded heaven for a wooden cross
And all these years You've carried me
You've been my eyes when I could not see
And beauty grows in the driving rain
Your oil of gladness in the times of pain

Your grace, Your grace
I'm nothing without You
Your Grace, Your grace
Shines on me 2x

oh yeah

Shines on me, shines on me
Your Grace Shines on me
Shines on me, shines on me
It's Your grace 2x

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Read more: Michael W. Smith - Grace Lyrics | MetroLyrics

Double Exposed

DOUBLE EXPOSED

Durban photographer Angela Buckland has teamed up with social scientists to give a ground-breaking new take on disability, in a book inspired by raising a special-needs son.  She speaks with Glynis Horning.

“Every parent’s secret dread is a dodgy child,” says Angela Buckland, as her 9-year old clambers happily onto husband David’s lap, then pokes compulsively at the top of his head with a pencil.  She’s smiling when David leads the child firmly away, but tears film her eyes.

It’s Angie’s combination of candour and caring that gives her words, like her photographs, such power.  Both are caught between the covers of an extraordinary new book out this month, Zip Zip My Brain Harts, with commentary by Stellenbosch psychology professor Leslie Swartz, his research assistant Kathleen McDougall and Human Sciences Research Council (HSRC) researcher Amelia van der Merwe.

In the foreword justice Albie Sachs, who lost one arm, links the book’s conception to the “democracy of the disabled” that he joined in 1990, when he was asked to advise on advancing the rights of the disabled, and confronted his condition for the first time.  The book was born seven years later – with Nikki.

“He was our first child and we were euphoric, “says Angie.  She was 35, a respected photographer, and her architect husband, David, was 40.  “We’d been married for nine years, we had a dog, a house; this was the natural next step, he says wryly.  Angie had a perfect pregnancy culminating in a home birth with a trusted midwife.  “But after a few hours the labour stopped.”  A dash to the hospital followed, and 36 draining hours later, Nikki arrived.    

“Though Nikki weighed just 2,7kg, he seemed fine to us but we did not realise what we were in for.  Nikki was a fussy baby, who hardly slept, but a paediatrician gave him the all clear at 10 days, and two months passed before their midwife suggested something might be amiss, and recommended a homeopathic doctor.  “It was when the doctor told us to take Nikki immediately to a specialist paediatrician that alarm bells went off”. 

 Zip Zip

Endless tests and consultations with geneticists and other medical professionals did not even bring the comfort of a diagnosis: Nikki’s disability has no name or known cause; he’s simply described as “low functioning.”  “It was all so alienating, so terrifying,” says Angie.  “From having them carry our baby off screaming to take blood from his jugular (no other vein was big enough), to answering endless – painfully intimate – questions about our families and ourselves.  No one wanted to comment.”  The first real guidance she and David received was when one specialist gave them the number of a mother of a severely disabled child.   “She’d put her kid in an institution, a route we would not go”.

It was another parent who provided what Angie and David felt was the best way to proceed.   “Jenny Buckle, a Cape Town mother of autistic triplets, had researched all possible approaches, and concluded the best is to try to recover your child with intensive tutoring and stimulation.  Parents themselves can’t do it – it’s too gruelling and we need to focus on parenting.” says Angie.     

She found two young tutors and arranged for a retired psychologist friend to train her and David in methods most helpful for Nikki.  His biggest problem is non-compliance.  He won’t listen and is tactile defensive; he struggles with sensory overload. 

Nikki responded so positively to the intense behaviour modification programme that he was able to attend an ordinary preschool for a year.  But when other children progressed he lagged behind, missing all major milestones.  At 9, he still has the mental ability of a 3-or 4-year old.  “One of the hardest parts of having a child like Nikki is accepting there can be no proper “recovery” says Angie softly.  It’s learning to let go, and just do your best”.

Snap Snap  

 Part of Angie’s own way of coping has been to use her photography to process the bewildering complexities and overwhelming emotions of their situation.  In the first series in her book, she superimposes clinical X-ray images of her son’s physical idiosyncrasies over tender portraits of him, highlighting the difficult relationship between the family and the medical profession. 

As one mother puts it in the book, “I mean, I think our son is so handsome and then the doctor just ripped apart his face: “He has all these dimorphic features.  His eyes are widespread.  He has no bridge on his nose.  His ears are too low.  “I felt like I wanted to wring my own neck because I would look at my son and find myself thinking, oh, my God, he does look like that”    

In a carefully researched but unusually empathetic commentary, Swarz, McDougal and Van der Merwe say that parents frequently find the medical way of seeing and dealing with disability dehumanising.  This feeds into insecurities and fears – mothers especially are under great social pressure to produce a “perfect child” as part of what is seen as the “women’s” role.

But while we’re brought up to believe medicine and science should be able to fix anything, they say, the reality is that doctors cannot cure everything.  What doctors’ often then do is “try to do more and more investigations to find a cause or cure when they suspect – or even know – this quest is hopeless.  Or they may protect themselves from a sense of hopelessness and despair by trying to cut off emotionally.

“What we need to learn from, “conclude the researchers, “are those encounters where somehow both the parents and the doctor get it right – where it’s not about fixing problems, but about working together in a constructive, respectful and helpful way.”

Until then, the formal medical approach leaves parents confused and emotionally bereft.  It may also encourage the age-old idea of disability as flawed and freakish.

“But what if disability were considered ordinary?” the researchers suggest.  “What if it was considered not so much a sign of incontrovertible difference, but just one among many differences that there are already between people?” 

It’s this sense of the extraordinary as ordinary that Angie set out to capture in her second series – photographs of clothing made or altered to hide children’s differences, but also to help them cope with their physical challenges.  Instead of shooting garments like this as objects signifying otherness, “perhaps even shame,” Angie opted for a more practical approach.  “I was very aware of the notions of idealised childhood in Pampers and chain store ads.”

For the third and final set of photographs in her book, Angie worked with her family and five others to interpret different aspects of their lives with disabled children.  “Everyone’s situation is different depending on the severity of the diagnosis” she says.  “The only certainty is uncertainty”.

Singed Wings

In varying degrees, however, every family must deal not just with the gruelling daily challenge of parenting but with guilt and blame.  “Family members start looking down on you”, says one mother.  “I have had some look at me and say, “What did you do when you were pregnant?”

Then is the sorrow for what might have been.  As another parent put it “It’s not just the grief of losing the child you dreamt of, but also the parent you dreamt you might be”.

What has been described as the “trauma of dashed expectations” is more complicated than grieving for a child who has passed away, say the researchers.  “The child who has “died” for parents of disabled children is imaginary, so they do not get the ritualised community support that people receive when someone actually dies”.  Instead they’re often encouraged to focus on the “specialness” of their child, to the exclusion of expressing emotions like anger or frustration.

“But you learn to survive – you have no choice, especially when you have a second child”, says Angie.   Nikki’s sister Christine was born 18 months after him, and is “whole and bright and very beautiful.  This is all hard enough for her, and it will get harder when self-consciousness sets in.”

Already she must contend with disapproving stares as Nikki barks in public and runs out of shops with sweets stuffed down his shirt.  In academic literature, say the researchers, parental grieving was understood to progress through shock, denial, anger and depression before acceptance with “realistic caring for the disabled child.”

But it is no longer believed to be a simple linear process – the stages may not always run in the same order, and they may return.

“Nikki is so dear, but living with him is a work in progress, says Angie as Nikki flits by.  Adds David: “Sometimes I see him as an angel from heaven that singed his wings on the way down”.  All they and many parents in their position want, they say, is for their children to be accepted and acknowledged, and have access to support, resources and occasional respite.

“We once holidayed in the fishing village of Arniston, where the local community embraced Nikki like one of their own, taking him off to play”.  On the night we left, the village kids came and sang songs about their own problems, like poverty and unemployment, just as they’d shared in ours.  There’s nothing more healing than honest exchanges and empathy” says Angie.       

           Article from Associated Magazines August 2006

Anke en Markus - just after we were told the truth!