My sister’s learning disability and mental illness are not ‘a blessing’

Just what I used to hear from conversations with young siblings of children with disabilities / life limiting illnesses ... the frustration, anger and guilt. 
They deserved and needed particular understanding and to have the space and time to share their feelings. 

"The saddest thing is that she’s aware that she’s different. She knows I have a job, a boyfriend, a car (mainly to be able to drive her around — but that’s no consolation to her), and she doesn’t understand why she can’t have all those things too. We all compare ourselves to the success of our siblings, so imagine having such a large contrast in the opportunities that are presented to you. I have extreme survivor’s guilt — I feel like, by pure chance, I got to be the one who got to have a normal life. And I’ve said out loud a few times that if I could swap places with her, I would. My mum tells me thinking that way doesn’t help anyone — least of all my sister — but we don’t always experience constructive thoughts, do we? And I suppose this gives me a sort of control over my thoughts, and reduces the survivor’s guilt a little bit — knowing I’d be ready to step in at any time."

Link 

"On High Alert: Hyperarousal + ‘losing it’ over nothing"

A powerful read from "Teenage Whisperer" - (abstract)

" .... You can then talk about the stress flashpoint at an appropriate later moment, acknowledging that you noticed I was getting agitated. This is such powerful stuff. If you help me to stay calm, and then later let me know that you noticed this (and this it wasn’t a fluke that you got me to do something to distract me or made me laugh) I will be blown away. Someone that helped me stay calm. Hell, someone that noticed how I was feeling. It then doesn’t take much more to get me to a place where I’ll maybe talk about how I’m feeling and you can help me come up with strategies to help me stay calm and reduce my baseline arousal levels. If you help me meet my immediate basic need (to stay calm) then I will sense your care, and care makes us listen"

Link

"Parent survey reveals widespread concerns about mental health impact of COVID-19 on young people’s mental health"

Released Thursday 14th May 2020

"YoungMinds is calling for Government action to limit the impact of the COVID-19 pandemic on children and young people’s mental health, as a new survey reveals widespread concerns among parents and carers."

"The charity YoungMinds has today published the results of a survey with more than 1,850 parents and carers, in which respondents expressed worries about the long-term impact of COVID-19 on their children’s mental health, and described the challenges they face in finding support. [1]"

"The results show that:

• 67% of respondents agreed that they are concerned about the long-term impact of the coronavirus on their child’s mental health. This rose to 77% among parents and carers whose children had required mental health support in the previous three months. [2]
• 29% of respondents disagreed that there was enough support (information, helplines and resources) available to help them and their child get through this time. 24% of respondents said that they would not know where to turn for advice and information on supporting their children’s mental health during this time.
• Among respondents whose children had received mental health support in the previous three months (through the NHS, private providers, school counsellors, charities and helplines) 25% said that their child was no longer able to access it, but still needed it.
• 66% of respondents said that the coronavirus had had a negative impact on their own mental health."

Link

Editorial: Demand avoidance — pathological, extreme or oppositional? Ann Ozsivadjian

"Since its inception in 1980, the term PDA has generated much debate, indeed, arguably few subjects have generated such controversy in the neurodevelopmental literature. However research in the area is moving into more practical arenas, including trying to understand why some children present with problematic demand avoidant behaviour, in order to provide practical support to families. In this special edition of Child and Adolescent Mental Health, data from two studies are presented which begin to look for underlying factors contributing to an anxious need for control. Commentaries then follow, highlighting inherent nosological and methodological difficulties in investigating PDA. In this lively debate, while the controversy continues, some headway is made in terms of understanding why some young people might present with such a rigid and maladaptive response to everyday demands, including an aversion to intolerance of uncertainty leading to controlling behaviour. It will be crucial for both health and education to develop a robust evidence base to understand the driving mechanisms for demand avoidant behaviour, and develop specific strategies for managing what can be very challenging behaviours."

Link to editorial

"Multi-disciplinary teams are needed to sensitively diagnose autism in Deaf children"

From the Association for Child and Adolescent Mental Health:

"An ethnographic study of NHS professionals, who diagnose autism in Deaf children, finds that recognizing the intersections between mental health and Deaf culture is essential for healthcare professionals to make sensitive diagnoses. The study, conducted by researchers in the UK and the Netherlands and published in the journal of Culture, Medicine and Psychiatry was based on an analysis of the practices and perceptions of 16 health service professionals who have conducted autism assessments for Deaf children aged between 0 and 18 years.

Natassia Brenman and colleagues learnt that professionals working in specialist Deaf Services, or with experience working with the Deaf community, had an intersectional understanding of autism assessments. As such, these professionals used their knowledge of how cultural, linguistic, sensory, and social factors interact when making their diagnoses. Many professionals highlighted that Deaf language and culture can be markedly different from social communication observed in the hearing population. Consequently, a commonly vocalized frustration was the emphasis on using a diagnostic system that focuses on comparisons to ‘norms’ based on populations from a hearing culture.

Undertaking an autism assessment is more complex when the affected child is Deaf. Indeed, the primary issue raised by the professionals involved in this study was how to differentiate between the features or behaviours they should attribute to autism, and which to deafness. Going forward, Brenman and colleagues posit that multi-disciplinary diagnostic teams are necessary to help recognize the various dimensions of a Deaf child’s experience and abilities."

Link Here

"Research helps police understand child to parent abuse more than ever before"

"The study aimed to explore better ways to understand child to parent violence and highlight the need to formally recognise this within law enforcement and social services. Their aim was to develop new ways to prevent such abuse in the home and provide appropriate support to families.

The results of their research have now been made public and highlight that addressing CCVAB requires a multi-agency partnership approach.

The research team found a lack of coordination and information sharing between health, mental health, education, social care and criminal justice services. This meant that the police are often unaware of known concerns or follow-on actions that have been identified but are still required to respond to calls.

In particular, they found that link between school exclusion and attendance and incidents of CCVAB in the home requires further examination. They also identified the need for adult and child safeguarding teams to work more closely in these cases.

The study also recommends that recognising and recording CCVAB is an essential first step in understanding the extent and profile of this form of abuse."

From - Link

Vicarious trauma and Burnout

Assessment tool from ProQOL.org. So how do you measure up?

Compassion Satisfaction and Compassion Fatigue Rating
https://www.proqol.org/uploads/ProQOL_5_English.pdf

Some Prevention Suggestions for Carers
https://www.proqol.org/uploads/Prevention_suggestions.doc