'"4%CHILDWELFARE.CA The Caregiver Curriculum on FASD

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1 '"4% & Child Welfare Community of Practice '"4%CHILDWELFARE.CA The Caregiver Curriculum on FASD FASD Informed Care: Stress, Fa4gue and Self Care Curriculum Development Team: Dorothy Badry, PhD, RSW Jamie Hickey, BA, MSW (c) Faculty of Social Work University of Calgary Project Funder: Public Health Agency of Canada ( )

2 Understanding FASD as a Disability for Children in Care Module 2.3 FASD Informed Care: Stress, FaNgue and Self Care

3 How to use this module Open in PowerPoint or PowerPoint viewer Click the Slideshow tab then click the From Beginning menu buson that appears below Use your mouse to click on the arrows and items on the slides to navigate For longer modules, terms that appear in blue within the table of contents with an underline can be clicked to navigate the module.

4 How to use this module, connnued The main naviganon busons work like this Go back to the very start Go back Go to the Table of Contents Go forward Go to the end of this module

5 How to use this module, connnued There are also 2 special naviganon busons This buson will return you to a list if you are asked to click to learn more about different topics This buson will return you to the main chapter if you click on a colored box to see an example

6 Table of Contents Why seek a diagnosis? Caregivers and Caregiving Understanding Caregiving and Well Being Understanding Stress and FaNgue Review Curious to Learn More?

7 IntroducNon The term family and caregiver is used to describe anyone who is caring for a young person living with FASD Caregivers for children with FASD can include families (birth, foster and adopnve) and others such as relanves/extended family. In general, caregivers refers to those individuals who are those individuals who care for and nurture children on a daily basis in the community Children with FASD o[en have high care needs that are not always well understood outside of the home

8 IntroducNon Families are caregivers as they are the ones responding to and suppornng the needs of children with FASD. Many families o[en do not know a child has a condinon on the FASD spectrum. It is important to highlight that children and adults with FASD live across all sectors of society and prenatal alcohol exposure may never be considered as a possible cause for problems idennfied as learning difficulnes or disabilines, having trouble in relanonships, behavioral issues that o[en get worse in adolescence. A diagnosis of FASD may help shi[ the way that the individual is supported and this is important. Caregivers experience high levels of stress and this module explores this topic in terms of wellness

9 Why search for a diagnosis? A diagnosis of a child with a disability is o[en challenging for any parent Parents o[en insnncnvely know when there is something the maser with their child Parents have dreams for their children Ge^ng a diagnosis may change that view of the future

10 Seeking a diagnosis It is in day to day living that caregivers realize there is a problem for a child The tasks of daily living generally include rounnes such as ge^ng up in the morning, going to school, recess breaks and lunch, coming home from school (on a bus perhaps) and the evening rounne, prior to bednme. Caregivers of children with FASD realize that any one or more of these daily living acnvines can present challenges

11 Seeking a diagnosis is about knowing what s wrong? The reason caregivers seek an answer for what s wrong is because they don t know and none of the strategies they use are working. As these concerns grow, the confidence of caregivers o[en decreases. It is not about trying harder, but rather, trying differently. Standard parennng strategies in response to behavior and consequences simply don t work for children with FASD. Diane Malbin (2012) Everyone gets frustrated the child, the parents, the school, neighbors, the bus driver, friends, siblings and the list goes on. Ques4on: What daily rou4nes are a problem? What can you try to do differently?

12 What is unique about an FASD diagnosis? While an FASD diagnosis is a medical diagnosis, the consequences are o[en social It is the social and behavioral aspects of a child s life where problems are o[en noted SupporNng children socially and behaviorally is one of the most important intervennons that can occur for a child and a family living with FASD Parents want their children to feel included, accepted and involved in the community, wherever that is Parents care deeply about what happens to their child, and are usually aware of the differences associated with a disability

13 What is the purpose of a diagnosis? The purpose of a diagnosis is to provide treatment. Ge^ng a diagnosis is about making changes in the environment to support and accommodate the needs of a person with a disability. A diagnosis provides informanon and generally recommends a pathway of care. For most individuals with FASD the biggest challenges for caregivers are o[en found in social and behavioral problems. These social and behavioral problems are signs that there may be an underlying problem.

14 Engaging in FASD informed care A diagnosis of FASD is the pathway to planning FASD informed care means that the unique and challenging neurobehavioral problems of children with FASD are recognized, understood and responded to effecnvely A need exists to understand and reframe the behavior of children with FASD as brain based and not intennonal This approach supports removing blame from the child and from the caregiver

15 FASD informed care FASD informed care means that many social and behavioral concerns are reframed. Each problem for a child with FASD need to be reviewed and examined from an environmental perspecnve. Children with FASD keep making their needs very clear through their behaviors and it is crincal that caregivers and caseworkers see these problems as a means to shore up the structure and responses to the child.

16 Caregivers and caring The term care has been defined as being a protector, raising (children) and even worries. A caregiver such as a foster parent takes on the responsibility of caring for children who cannot, for many reasons be at home, in parental care It is important for caregivers to pracnce self care and respite and relief are important The Alberta Caregivers AssociaNon has created a Bill of Rights -

17 Respite and relief help with stress Respite and relief does not have to be a specified Nme. Respite can come in many forms, ge^ng out for a walk, going out in an evening, having someone help the child with homework, or taking the child out for social acnvines in the community on a regular basis Respite basically means taking a break. Even lisle breaks can help in the overall picture of health for a caregiver You have to think about what is realisnc within your circumstances, what resources are available, how you access these supports and doing your best to build that into your home and life

18 Understanding caregiving and well being The concept of well being is one that promotes health. We know that caring for children with FASD is demanding and have idennfy indicators of caregiver fangue in relanon to: EmoNonal and Mental Well Being Social Well Being Physical Well Being Spiritual Well Being

19 Pay asennon to fangue Caregiver fangue can have many symptoms and sign, ranging from feeling a sense of burden, depression or chronic Nredness. When this becomes a constant state there is a risk that both the caregiver and child have unmet needs. Caregiver fangue can lead to a crisis that leads to thinking such as I just can t do this another day. A call to the social services crisis team is made: Come and get this child right now. I just can t take it anymore.

20 Pay asennon to fangue Caregiver fangue is difficult to talk about because it is not always recognized as a problem. Why is it hard to talk about? Caregivers naturally have a strong sense of commitment, dedicanon and responsibility for children placed in their care whether that be through fostering or adopnon. There are also concerns for caregivers that if they open up about their fangue that children may be moved out of their home. One of the ways to respond to caregiver fangue is to be aware of the challenges, recogninon of the high needs of children with FASD and to ask for supports and relief as needed.

21 What is caregiver fangue? FaNgue is defined as a sense of weariness or overexernon that can be both physical and mental Caregiver fangue is not always recognized right away and it is important to recognize indicators This fangue o[en means something is out of balance, out of sync or or just not working Caregiver fangue impacts the ennre family system and awareness is important

22 Indicators of caregiver fangue: EmoNonal and mental well being Caregivers do this work because they care A lack of understanding, a sense of not doing the right things Overwhelmed/Bewildered FrustraNon/Despair Loss of confidence and self esteem Experiencing a sense of constant demand increasing fangue MeeNng needs of the child is never quite enough

23 Indicators of caregiver fangue: Social well being Less contact with folks in the system Decreased socializanon in the community Increased stress can cause isolanon Behavioral challenges may be an issue if less community ounngs are taking place Self care and respite are not being used in a way that is suppornve

24 Indicators of caregiver fangue: Loss of confidence Voice of a parent We ques8oned our paren8ng suitability and our strategies we didn t need cri8cism; our parental self- esteem wasn t overflowing. When parents are supported to think in new ways about their challenges a door opens to considering the work of parennng. It is important to provide support as caregivers have many roles and responsibilines in life. Badry, D. & Lawryk, L. (2000) LeSers to Our Children, LeSers from Our Children: Living with FAS and Alcohol Related Effects. CRDS, University of Calgary.

25 CreaNng awareness about fangue and stress The constant demand and needs of the child are not always readily apparent o[en unnl a crisis occurs the proverbial straw that broke the camel s back As a caregiver one needs to be aware of their own stress level and pay asennon signs that indicate frustranon and even breaking points The physical health of the caregiver is the foundanon of support in a child s life and need asennon SomeNmes caregivers take on too much and it is the role of the person working with that family to moderate the number of intakes or placements Even the best caregiver can only handle so much Make sure to check on the use of respite and ensure that these potennal physical problems are properly evaluated by the right professionals

26 Indicators of caregiver fangue: Physical well being Problems with sleep Chronic health issues Lack of exercise NutriNon issues Depression Always Nred

27 Indicators of caregiver fangue : Spiritual well being A spiritual connecnon relates to a linkage with a higher power Many caregivers have spiritual values that are reflected in who they are as a caring person If disconnecnons to the spiritual pracnces of the caregiver occur it is important to check in with the person. Usually all the areas such as physical, mental, social and spiritual are interwoven and when one area is out of balance due to caregiver fangue, all these areas can be impacted

28 Self care is important The intennon of this module was to create awareness generally about stress, fangue and caregiving Awareness is an important dimension of making a change Think about the ways you can engage in self care that will support you in your parennng/ caregiving work you are worth it!

29 Recap and acnvity The topic of stress, fangue and self care is one that is easy to dismiss. It is hoped through understanding these issues from a perspecnve that is FASD informed, that you will consider the ways you need to pracnce self care Think about areas in your life where you need to find balance. Awareness of stress and creanng or shoring up supports benefits everyone in your family especially you Reflect on areas where you would like to see change and find someone to share this with as a beginning place. Visit the Alberta Caregivers AssociaNon Website on the following page

30 Curious to learn more? Visit the website for the Alberta Caregiver AssociaNon: Check out this video from the Alberta FASD Learning Series! Understanding the Needs of the Caregiver: Psychological treatment and interven4on - hsp:// feature=player_embedded&v=j8edsenic0y

31 The Caregiver Curriculum on FASD Title: Caregiver Curriculum on FASD (Fetal Alcohol Spectrum Disorder) 2014 Author: Dorothy Badry & Jamie Hickey in collaboranon with the Tri Province FASD Research Team Format: pdf and Power point - online topics and modules on the website fasdchildwelfare.ca Publisher: Faculty of Social Work, University of Calgary; Faculty of Social Work, University of Manitoba & Children s Aid Society of Toronto- Child Welfare InsNtute This project was funded by the Public Health Agency of Canada. ISBN Use of Material: This material can be freely shared and used with acknowledgment using the citanon below. Cita4on: Badry, D., Hickey, J. & the Tri Province FASD Research Team (2014). Caregiver Curriculum on FASD. Online: fasdchildwelfare.ca; Faculty of Social Work, University of Calgary; Faculty of Social Work, University of Manitoba & Children s Aid Society of Toronto- Child Welfare InsNtute. Funder: Public Health Agency of Canada.