'"4% & Child Welfare Community of Practice
'"4%CHILDWELFARE.CA The Caregiver Curriculum on FASD© Special Topics: Grief and Loss 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 (2011-‐2014)
Special Topics Module 5.1 Grief and Loss
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 • Terms that appear in blue with an underline will give you a definiUon if you hold your mouse over them without clicking
How to use this module, conUnued The main navigaUon buSons work like this… Home topic list Go back Go back to the very start
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Table of contents • • • • • • •
IntroducUon to Grief and Loss Caregiver Stages of Grief and Loss Birth Mothers The Experience of Diagnosis Moving Forward Review References
IntroducUon The focus of this module is on Caregiver Stages for Grief and Loss and is based on the work of Jan Lutke of Vancouver, BriUsh Columbia, Canada an adopUve parent and leader in the Canada FASD Research Network 2014 ©. Jan has graciously shared this informaUon for this curriculum designed for caregivers and families living and working with children adolescents and individuals living with FASD.
Se`ng the stage • Each family has unique experiences in their journey with FASD • The topic of birth mothers is also important to address • The example on the next two slides helps set the context for the caregiver stages for grief and loss that are included within this module
From fostering to adopUng: One family’s experience • “We ran an emergency medical receiving home for the foster care program. Two days later we are home, and I have in my arms a ten day old fragile baby boy with huge so= brown eyes…In two days he had already wrapped his ?ny fingers firmly around my heart. I learn that his mother is an alcoholic and that the baby will need special care…we go into the days confident that we can cope…at around age 3 behavior related to FAS (diagnosed) became quickly apparent and in despera?on we turned to books, doctors, psychologists, and searched everywhere for help with out situa?on…there is near total innocence of the immense psychological toll that we are buried under…Our journey [became] a much lighter trip with more relief and understanding, knowing we were not walking the path alone. Our journey with FAS is not over.” •
Source: Badry, D. & Lawryk, L. (2000) LeSers to Our Children, LeSers from Our Children: Living with FAS and Alcohol Related Effects. CRDS, University of Calgary.
Review of one family’s experience • This young man was apprehended shortly aeer birth and was idenUfied as medically fragile and eventually received a diagnosis of Fetal Alcohol Syndrome at an early age. • Aeer the iniUal placement he was returned to parental care (once stabilized) and apprehended again aeer several months, again admiSed to hospital due to physical neglect, malnourishment and developmental delays. • A decision was made for permanency planning and the foster parents were told that the child would be placed for adopUon. Aeer a year that decision was rescinded and this family eventually adopted this child. • Over many years they received supports around behaviors that included lying, stealing and defiance and adolescence was a very difficult Ume. Se`ng aside hopes and dreams and acceptance with professional support was the resource that helped this family to cope through many difficulUes. It was also stated: “Blame brings no good.” •
Source: Badry, D. & Lawryk, L. (2000) LeSers to Our Children, LeSers from Our Children: Living with FAS and Alcohol Related Effects. CRDS, University of Calgary.
Foreword on the caregiver stages of grief and loss for adopUve families • The work presented in this module was drawn from a paper prepared by Jan Lutke and reviewed by the curriculum development team for this project. The work of Jan Lutke from BC, Canada is highlighted in these slides and included with permission. This informaUon is intended to be helpful foster and adopUve parents as well as families caring for children, adolescents and adults • It is important to note that each family’s experience is unique and these stages offer a framework that may be supporUve to adopUve and foster parents as well as caregivers and extended family. Part of the journey is just in trying to make sense of it all
Caregiver stages for grief and loss Four States of EmoUonal Consequences to a Diagnosis of FASD for an AdopUve Family Relapsing, Remi`ng Grief by Jan Lutke, 2014 ©
• The four states of emoUonal consequence of an FASD diagnosis is important to all families. • Stage 1: ValidaUon • Stage 2: Disbelief • Stage 3: Loss • Stage 4: ReaffirmaUon
Four states of emoUonal consequences to a diagnosis of FASD for an adopUve family: ValidaUon STAGE 1 – VALIDATION Jan Lutke, 2014
• Valida&on – they were r ight all along; something IS wrong • Relief – that something is wrong that is not a result of poor parenUng (which is what most families have been told for years) or just early environment • Expecta&on – that supports and services will automaUcally be there for the picking and choosing; things will “get beSer” because of the diagnosis
Four states of emoUonal consequences to a diagnosis of FASD for an adopUve family: ValidaUon STAGE 2 – DISBELIEF Jan Lutke, 2014
• Shock, disbelief – (1) no maSer how much the diagnosis is expected, it is sUll a shock to the system as what was suspected is now real and final –and the realizaUon that this is not going to suddenly “get beSer” hits home; (2) then the realizaUon that services are NOT just ‘out there’ and that eligibility rules are such that many/most individuals with FASD do not qualify for, accept or receive services; (3) that even more work will be expected of the parents since there is now “proof” the individual is disabled; there is no way that “tough love” is an opUon (especially hard for fathers) • Protest – this simply cannot be….I don’t want it to be this (any longer); it has to be something else because if it is this, then I am trapped; I don’t know what to do, I am not ready for this • Resentment – that this was not found much earlier so things would have been different; that services have eligibility rules that do not match needs
Four states of emoUonal consequences to a diagnosis of FASD for an adopUve family: ValidaUon STAGE 2 – DISBELIEF Jan Lutke, 2014
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Refusal –refusing to accept the diagnosis and believe it is “making excuses” for the “bad” behaviour of the diagnosed individual, especially when that behaviour has had a pronounced impact on their lives not be happening to me or my child, I Sense of Unfairness – sense that this should did not ask for this; I do not deserve it; I do not want it; I am afraid of what it means Anger -‐ that not listened to or believed; that the individual had to go through so much, was treated so badly by society at large and systems in general; anger at the systems who did not understand and did not help the family; at the lack of resources; at the a`tudes of helping “systems” that made things worse; anger towards the birth mother who “did” this (and MUST be worked through) BiHerness – a feeling of deep, unfocussed anger and generalized ill will and feelings of hopelessness that oeen precludes the ability to see opUons (directed at self, not just systems, as parents, especially mothers are expected to “fix” things; for adopUve mothers, the idea they were “chosen” for this child means they expected themselves to be a “super parent” so there is a tremendous loss of self as parent AND a feeling if having been lied to, taken advantage of, etc.
Four states of emoUonal consequences to a diagnosis of FASD for an adopUve family: ValidaUon STAGE 3 – LOSS Jan Lutke, 2014
• Guilt, remorse, regret – If only I had known, had proof, I would have been a beSer parent, different parent, done things differently; I am a horrible parent (different than self-‐blame of birth mom but can be every bit as paralyzing); they gave me a child, and look at what I did to him/her • Sense of Loss – for the child that never was; for individual/ child who is and for the loss of his/her potenUal and future; the loss of family which cannot be over-‐stated (all the things that everyone went through, the effects on siblings, marriage, etc..) • Anxiety – OMG feeling of “now what?” “How do I change; fix it now?” What do I do now; first; next? I don’t know WHAT to do or HOW to do it and I am AFRAID • “My heart oeen ached because of the disappointments an rejecUon you had to endure at such an early age when life should have been carefree.” (Voice of an AdopUve Mother)
Four states of emoUonal consequences to a diagnosis of FASD for an adopUve family: ValidaUon STAGE 3 – LOSS Jan Lutke, 2014
• Fear -‐ that they REALLY will have to take care of/provide for/help their individual/ child the rest of their lives and beyond; how to do that? Who will help? Who will pay? What about the other children” how is this fair to them? I cannot afford this’ I cannot DO this • Depression “this is all my fault”…..”I should have…I could have….I would have” HUGE • Exhaus&on – bone weariness that comes with all the mental effort and oeen leads to physical health issues/problems • Hopelessness – unfocussed; generalized apathy; asking or expecUng a parent(s) to do anything or follow through at this point in Ume is unrealisUc and looks like the parent does not care
Four states of emoUonal consequences to a diagnosis of FASD for an adopUve family: ValidaUon STAGE 4 – REAFFIRMATION Jan Lutke, 2014
• Release – of the past and negaUvity • Acceptance – of reality as only one dimension of the person, the parent and the family as a whole (VERY difficult to get to when a lot of damage in the family system) • Belief -‐ that there can be a future; posiUvity; no maSer what form it takes or what things might actually look like for the person with FASD and for their family (IMPORTANT – this does NOT mean that everyone stays together, is okay with everything, etc.,) • Hope – we can go on • Restora&on of ability to make decisions in the best interest of everyone involved • Ability to move on with life – understanding the process and the cyclical nature of it • Re-‐AffirmaUon – coming back from the edge of a cliff
Shieing the focus: What is occurring for birth mothers of children (at any age) diagnosed with FASD? • IntroducQon • It is always important to consider the history of children in care in relaUon to their family. Children come into care based on protecUon needs, parUcularly when substance abuse is a serious problem and a child is not safe in the home environment. It is important to humanize birth mothers and promote some understanding of their lives from a women’s health perspecUve • In the following slides relaUng to the emoUonal consequences of the birth mother, Jan Lutke (2014) shares some important informaUon to consider
Compounding emoUonal consequences to a diagnosis for the birth mother of a child diagnosed with FASD Jan Lutke, 2014
• SQgma – Concern about disclosing alcohol use and pregnancy – fear of losing children • NegaQve Talk/Self Belief – birth mothers have oeen experienced trauma and alcohol is used as a means/coping strategy to deal with personal problems • Child Loss – Parents who lose their children to child welfare care have profound experiences of grief and loss • PotenQal ReaffirmaQon– Talking about acceptance
For the birth mother
STAGE 1 – EXPERIENCE OF STIGMA • S&gma – created by society at large (which MAY be greater for women who are not alcoholic as society expects them, especially, to “know beSer”) • Judgement – of those who view the use or alcohol in pregnancy as a moral failure • Hos&lity – of others who blame the mother (angry) • Disrespect – by others at the “moral failing” • Secrecy – the sUgma makes talking about diagnosis difficult or impossible
For the birth mother
STAGE 1 – EXPERIENCE OF STIGMA • Rela&onships – there are many feelings in relaUonships that are difficult to handle. SomeUmes is easier to just leave • Avoidance – others don’t know how to “treat” the mother, how to interact; how to relate to her and she becomes a “non-‐person” • Lack of Understanding – others cannot fathom “how” or “why” • Patronizing and Condescending AUtudes -‐ of those who “know beSer” and believe this could never happen to them • BiHerness – No one helped me; no one helps me now; no one LISTENS to me; I have no meaning and no value beyond telling you that I drank in pregnancy
For the birth mother
STAGE 2 NEGATIVE SELF TALK/BELIEFS • Avoidance -‐ of dealing with anything related to the possibility of FASD; for some, of having reached out for help for self and child and been rebuffed many Umes; for many, their courage, determinaUon and persistence is ignored; their personhood is not valued • Guilt -‐ I failed; this is my fault; I did this; I harmed my child; I deserved to lose him/her (either in the past or now, at diagnosis, when he “finds out” I drank and hurt him) • Shame -‐ I hate myself and believe the negaUve evaluaUons/ judgements of others (much stronger and more profound emoUon than guilt – the enUre self as opposed to the behaviour is unacceptable); I am defecUve; unworthy and fundamentally damaged goods
For the birth mother
STAGE 2 NEGATIVE SELF TALK/BELIEFS
• Self Blame -‐ About the outcome of FASD, blaming oneself and what would/could/ should have been done differently can take over); a feeling of powerlessness; cannot undo the past
For the birth mother
STAGE 3 – LOSS AND GRIEF FOR THE CHILD WITH FASD • Anger from the individual/ child – needs support to understand and accept and to grieve her experience of this • Manipula&on from the individual/ child – fear will lose that child if not given in to (and this may happen) and to understand limits and boundaries as healthy, safe and essenUal for a relaUonship • Rejec&on from the individual/ child – no one supports BOTH child and mother to work through this – important work to consider • Re-‐connec&ng and Protec&on by the individual/ child -‐ can occur when effecUve, stable and long-‐term support that understands the dynamics is in place for both mother and child
For the birth mother STAGE 4-‐ REAFFIRMATION • Deep Regret -‐ I would give anything to change the past • Self-‐Realiza&on – I did not “do” this on purpose or because I “wanted” to; and I cannot change the past; I can only maybe change the future • Self-‐Forgiveness – “I had a problem”; NOT “I am a problem” • Self-‐acceptance – I am not powerless, I can do something and I can move on; the past is the past and no longer solely defines me as a person; how others feel is their problem; I am stronger than that • Peace – I am me and I will be okay
What is the Experience of the Child Receiving a Diagnosis? • Children (including adolescents) and adults who eventually receive an FASD diagnosis have already had a sense of something being wrong in their life. For children who are in care and not with their biological family they carry knowledge that there is a disconnecUon somewhere in their life. This is important to acknowledge. How is an FASD diagnosis perceived from their perspecUve?
Four stages of emoUonal consequences to a diagnosis of FASD for a child, adolescent and adult with FASD Jan Lutke, 2014
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STAGE 1: OKAY……..??? STAGE 2: NO WAY STAGE 3: CONFUSION STAGE 4: I’M OKAY
Four stages of emoUonal consequences to a diagnosis of FASD for a child, adolescent and adult with FASD STAGE 1: OKAY……..??? Jan Lutke, 2014
• Relief – you mean it isn’t me; I’m not stupid, dumb; bad; • Valida&on – “see, I TOLD you I couldn’t do it …..”; overcoming the sense of frustraUon with learning and other challenges in their life experience to date
Four stages of emoUonal consequences to a diagnosis of FASD for a child, adolescent and adult with FASD STAGE 2: NO WAY Jan Lutke, 2014
• Misinforma&on – most individuals have a LOT of this about FASD • Denial and refusal – no way I have that; I can’t have that; if I have that I am done; I am not like that • Resentment – it isn’t fair – and it isn’t • Shame – I’m a loser; my mother was an alcoholic ; she drank; what is wrong with me that she did that? • Anger – towards a birth mother; she did this to me; if she cared, she would not have drank; (from an individual diagnosis with FAS -‐ “it is easier to be angry than sad”). Anger is a feeling of power, of having more control; sadness is a feeling of being powerless, of having less/no control; anger is a “you do to” emoUon; sadness is a “done to you” emoUon) • Loss – self; future; sense of competence; who am I??
Four stages of emoUonal consequences to a diagnosis of FASD for a child, adolescent and adult with FASD STAGE 3: CONFUSION Jan Lutke, 2014
• Confusion – inability to figure things out; oeen have been given a lot of inaccurate informaUon about their histories; confused about how they feel towards mothers – or “should” feel (oeen, they are not allowed to feel the anger and we shut it down when it should be validated so they can work through and move on) • Fear – could lose job, kids, relaUonships; what people will think (I’m not like that”); their judgement • Fear – apprehension about skills and abiliUes ………… • Lack of understanding what it means and interpreUng things as “being bad”, “dumb” “a loser” • Sadness – I don’t want this; it is not fair and I don’t know how to handle this or tell you in words • Apathy – there is no point in trying; I will just fail
Four stages of emoUonal consequences to a diagnosis of FASD for a child, adolescent and adult with FASD STAGE 4: I’M OKAY Jan Lutke, 2014
• Gradual realiza&on – I am sUll me; there are sUll many things I can do • Understanding – I can do this…..my brain works – it just works differently; I need support….I deserve support…..I can use support…..support is smart • Acceptance – I can go on; this does not define me; it is only part of who I am; FASD is what I have, it is not who I am; finding a role for themselves that they can do and that gives value and meaning to their life
Grief and loss • Grief and loss are important to acknowledge on a number of levels as idenUfied in this module • Moving on with acceptance is the desired path for most families • AdapUng expectaUons and adjusUng life takes Ume • No one wants to be in a state of chronic grief • Awareness and acknowledgement of grief and loss are criUcal to moving forward
Moving forward • Things change oeen when least expected • A parent may figure out what works best with their child and conUnue to posiUvely reinforce a strategy that is successful • What seemed like a big issue yesterday isn’t so important today • A small change in responding to the needs of children with FASD can make a big difference • Figuring out what works best for each child and moving forward is important
Last thoughts by Jan Lutke
• Anger is oeen a mask for pain that children and families experience • Diagnosis of FASD oeen involves an overwhelming sense of loss for self, partner, family members and the adult with FASD. Loss is complicated and oeen chronic in nature. • Diagnosis forces one into new place and requires everyone involved to re-‐look and re-‐think everything – and that this is a process for which there are no shortcuts and Ume is required • Aeer diagnosis, parents oeen have expectaUons that this diagnosis will lead to services; make a ‘magical’ difference – the realizaUon that this is not always/usually the case, can be the end of hope for “fixes” and the start of more grieving. This is a process which must – and can -‐ be worked through with the right supports and help
Why does the diagnosis have to be made? Jan Lutke, 2014 • Everyone, regardless of what we are talking about, should have the RIGHT to a medical diagnosis that reflects, accurately, their medical condiUon and the treatment and support that best meets the diagnosUc need. It is a maSer if simple humanity.
Why does the diagnosis have to be made? Jan Lutke, 2014 • • • • • • • • •
WHY? Because…… We would not be asking this in any other condiUon 2. Without diagnosis, nothing has any possibility of changing for the beSer 3. Labels (the many other oeen inaccurate or only parUally reflecUve diagnosis individuals oeen come with) can be damaging and hurrul 4. The absence of ACCURATE diagnosis allows everyone to conUnue down paths that are counterproducUve to support and help and are oeen, if not usually, harmful to the individual and his/her family 5. RealisUc expectaUons can only be built on accurate diagnosis 6. A diagnosis of FASD has implicaUons for EVERY area of the child or individual’s life (i.e. physical health), not just brain, and these areas will not be properly aSended to if the diagnosis is not made (whole body syndrome) 7. It is patronizing to believe that we must “protect” the person from the truth; it is not our right or place to “withhold” informaUon 8. The only way needed changes in systems and laws, services and supports will be developed is if we have the numbers to force this issue
Recap and acUvity • It is important to reflect on these stages and to acknowledge grief and loss while considering moving forward. It is important to reframe the construct of grief and loss as described by Jan Lutke (2014) in these slides. When grief is named, it is oeen easier to deal with. If you need grief support please contact local resources such as a counseling agency or professionals that offer these services. It is also valuable to recognize loss and balance this with gain through knowledge on FASD informed care. It is hoped this series of modules will be a support to you and promote a deeper understanding of the life experience of FASD. This requires support – idenUfy your support people, create a list and call upon them when needed • Review the website hSp://www.fasdconnecUons.ca/ • There is something for everyone on this website
References •
Badry, D. & Lawryk, L. (2000) LeSers to Our Children, LeSers from Our Children: Living with FAS and Alcohol Related Effects. CRDS, University of Calgary.
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Lutke, J. (2013). ANTICIPATING AND CONSIDERING THE EMOTIONAL CONSEQUENCES OF A DIAGNOSIS OF FASD IN AN ADULT: RELAPSING, REMITTING GRIEF. Oral presenta?on to the Canada FASD Research Network Diagnos?c Guidelines Mee?ng, Edmonton Alberta, October 2013
The Caregiver Curriculum on FASD • • • • • • • •
Title: Caregiver Curriculum on FASD (Fetal Alcohol Spectrum Disorder) 2014 Author: Dorothy Badry & Jamie Hickey in collaboraUon 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 InsUtute This project was funded by the Public Health Agency of Canada. ISBN 978-‐0-‐88953-‐375-‐2© Use of Material: This material can be freely shared and used with acknowledgment using the citaUon below. CitaQon: 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 InsUtute. Funder: Public Health Agency of Canada.
