fasd caregiver curriculum 5.2 special topics grief and loss 2 · pdf...

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Special Topics: Grief and Loss (2) 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 (20112014) CHILDWELFARE.CA & Child Welfare Community of Practice The Caregiver Curriculum on FASD ©

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Page 1: FASD Caregiver Curriculum 5.2 Special Topics Grief and Loss 2 · PDF fileSpecial(Topics(Module(5.2(Concerns(of(Grief(and(Loss(for(Children(and(Caregivers(

Special  Topics:  Grief  and  Loss  (2)  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)  

CHILDWELFARE.CA

& Child WelfareCommunity of Practice

The  Caregiver  Curriculum  on  FASD©  

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Special  Topics  Module  5.2  

Concerns  of  Grief  and  Loss  for  Children  and  Caregivers    

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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.    

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How  to  use  this  module,  conTnued  

The  main  navigaTon  buSons  work  like  this…  

Go  back  to  the  very  start   Go  to  the  end  

of  this  module  

Go  forward  Go  back  

Go  to  the  Table  of  Contents  

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How  to  use  this  module,  conTnued  

There  are  also  2  special  navigaTon  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  

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Table  of  Contents  

•  IntroducTon  to  Grief  and  Loss  •  What  is  Grief?  •  5  Stages  of  Grief  •  What  Should  I  Do  About  Grief?  •  Tips  for  Caregivers  •  Caring  for  the  Child  With  Grief  

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Grief  and  Loss  

One  important,  yet  oZen  ignored,  concern  that  affects  both  the  caregiver  and  the  child  is  grief  and  loss.      FASD  is  a  complex  diagnosis  for  both  the  individual  affected  and  his  or  her  caregiver.  The  individual  affected  by  FASD  may  struggle  with  physical,  psychological,  emoTonal  and  behavioral  challenges  while  caregivers  must  manage  the  stress  of  obtaining  appropriate  medical  appointments,  advocaTng  within  the  school  system  and  providing  behavioural  supports  at  home.      

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Grief  and  Loss  You  may  be  surprised  to  see  grief  and  loss  addressed  in  this  curriculum  when  so  much  of  the  focus  is  centered  around  the  child’s  potenTal.  Indeed,  children  affected  by  FASD  can  thrive  when  provided  with  the  right  supports  and  guidance,  however  it  is  also  important  to  acknowledge  that  the  diagnosis  of  an  FASD  can  also  bring  feelings  of  grief  or  a  sense  of  loss.      Not  all  people  will  experience  grief  and  loss  when  receiving  a  diagnosis.  For  some,  the  diagnosis  may  bring  feelings  of  relief  while  others  may  experience  conflicTng  feelings  of  both  relief  and  grief.  Every  caregiver  and  every  child  will  experience  the  process  of  receiving  a  diagnosis  differently.    

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Grief  and  Loss  

There  is  no  ‘right’  or  ‘wrong’  way  to  feel  in  the  face  of  a  diagnosis.  The  following  secTon  is  intended  to  provide  some  brief  informaTon  regarding  the  feelings  of  grief  and  loss  that  may  surround  a  diagnosis.      If,  on  reading  this  secTon,  you  idenTfy  that  you  or  your  child  are  having  difficulTes  in  adjusTng  aZer  a  diagnosis  please  contact  your  caseworker  or  invesTgate  counseling  services  and/or  support  groups  in  your  area.      

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Grief  and  Loss  

Grief  is  a  natural  and  normal  response  to  loss.  A  diagnosis  does  not  need  to  be  terminal  or  even  life  threatening  to  bring  about  feelings  of  grief.  A  serious  or  life-­‐long  diagnosis  can  also  bring  about  emoTons  of  sadness  and  loss.      Individuals  diagnosed  with  an  FASD  are  beginning  a  journey  on  a  very  different  path  then  that  travelled  by  their  peers.  This  new  journey  requires  both  the  child  and  the  caregiver  to  shiZ  and  reframe  expectaTons.    

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Grief  and  Loss  

As  a  caregiver,  you  may  have  envisioned  a  path  for  your  child,  imagined  how  their  life  would  unfold  and  planned  for  the  journey.  Your  child  may  have  also  imagined  the  future  and  set  goals.      This  new  journey  may  require  the  construcTon  of  new  goals  and  aspiraTons.  This  change  in  journey  represents  a  loss  of  expectaTons  –  the  expectaTons  that  you  and  your  child  had  built  prior  to  diagnosis.    

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Grief  and  Loss  You  may  have  already  heard  of  the  “5  stages  of  grief”  model  listed  below:    

–  Denial  –  Anger  –  Bargaining  –  Sadness/Depression  –  Acceptance  

 These  stages  were  iniTally  defined  by  Elizabeth  Kubler-­‐Ross  and  many  people  do  experience  one  or  more  of  these  stages  when  they  experience  a  loss.  It  is  very  important  to  note,  however,  that  there  is  no  right  or  wrong  way  to  experience  grief  and  loss.  Many  people  ‘skip’  some  of  the  stages  or  experience  the  stages  out  of  order.  For  the  purpose  of  this  module  the  stages  are  included  as  a  way  to  represent  the  wide  variety  of  emoTons  within  the  overall  experience  of  grief.    

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Grief  and  Loss  So,  is  grief  harmful?  Well,  the  answer  to  that  quesTon  depends  on  many  things.  Grief  is  a  normal  process.  It  is  a  natural  human  reacTon.  Grief  is  not  a  “bad”  emoTon  or  something  to  be  feared.  It  is  a  normal  response  to  an  event  that  causes  a  severe  life  disrupTon  and  loss  of  the  lifestyle,  life  path  or  life  events  you  expected.      Can  grief  be  harmful?  It  certainly  can  be  if  it  is  experienced  for  a  long  Tme  or  experienced  at  extreme  intensiTes.  If  you  are  concerned  that  your  grief  may  be  causing  harm,  we  recommend  that  you  speak  with  a  mental  health  pracTToner  immediately.  Many  services  and  support  groups  may  be  available  and  a  mental  health  pracTToner  will  be  the  best  person  to  advise  you  as  to  your  opTons.      

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Grief  and  Loss  While  they  can  be  painful,  the  situaTons  that  cause  grief  can  also  provide  a  tremendous  opportunity  for  growth.      Major  life  events,  like  a  life-­‐long  diagnosis,  demand  acTon.  Caregivers  and  children  must  come  up  with  new  goals  and  adaptaTons  in  the  face  of  the  new  informaTon  provided  by  the  diagnosis.      The  discomfort  that  comes  with  grief  assists  us  not  only  in  saying  goodbye  to  the  old  expectaTons  but  it  inspires  us  to  take  acTon  to  remedy  the  feeling.      

Think  of  a  situaTon  or  problem  that  you  have  solved.      Prior  to  the  situaTon  or  problem  being  resolved,  how  did  you  feel?      Go  back  in  your  mind  to  the  Tme  it  was  happening  and  think  about  what  you  did  when  faced  with  the  problem.    What  acTons  did  you  take?      How  did  you  feel  aZer  you  took  those  acTons?    

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Grief  and  Loss  What  should  I  do  if  I,  or  the  child  I  am  caring  for,  is  experiencing  grief  aNer  a  diagnosis?  As  menToned  before,  for  severe  or  prolonged  cases  of  grief  and  loss  please  contact  your  child’s  caseworker  or  a  mental  health  pracTToner  to  assess  what  resources  and  programs  may  be  available.      This  secTon  is  not  intended  to  address  situaTons  where  grief  is  incapacitaTng  (you  or  your  child  cannot  complete  your  daily  rouTne  due  to  grief)  or  cases  where  severe  mental  health  concerns  are  indicated  (grief  lasTng  more  than  6  months,  symptoms  of  traumaTzaTon  are  present  or  suicidal  thoughts/acTons  are  present)  as  these  situaTons  require  immediate  aSenTon  by  qualified  medical  and  mental  health  pracTToners.    

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Grief  and  Loss  Caregiver  Support  One  of  the  best  things  you,  as  a  caregiver  experiencing  grief,  can  do  is  engage  in  good  self  care.  There  will  be  a  module  later  in  this  package  with  self-­‐care  suggesTons.  In  the  face  of  crisis  the  importance  of  self-­‐care  is  oZen  ignored,  but  is  imperaTve  to  understand  that  you  cannot  effec1vely  support  the  child  if  you  do  not  care  for  yourself.  A  few  self-­‐care  suggesTons  are  listed  below:      •  Take  Tme  to  relax  or  engage  in  enjoyable  acTviTes  •  Eat  a  balanced  diet  and  set  Tme  aside  to  engage  in  exercise  (even  light  

walking)  •  Engage  your  personal  support  network  by  asking  for  help  when  you  need  

it.    •  Talk  to  supporTve  friends  or  family  members  •  Take  advantage  of  the  respite  care  opportuniTes  available  •  Seek  counseling  if  you  are  feeling  overwhelmed  or  distressed    

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Grief  and  Loss  In  addiTon  to  self-­‐care,  you  may  also  want  to  begin  assembling  a  network  of  support  for  the  coming  months.      Diagnosis  is  the  beginning  of  a  new  journey  and  you  may  find  it  helpful  to  speak  with  those  who  have  travelled  the  post-­‐diagnosis  path.  Ask  your  child’s  caseworker  or  contact  an  agency  that  offers  programming  to  individuals  with  FASD  and  ask  if  they  can  provide  contact  informaTon  for  caregivers  who  have  gone  through  the  process  of  diagnosis  before.  Many  individuals  and  families  have  also  self-­‐published  blogs  and  websites  about  their  experiences  aZer  diagnosis.      

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Grief  and  Loss  Your  network  of  support  can  also  involve  friends  and  family  members.  As  you  reach  out  be  prepared  to  provide  some  educaTon.  Some  people  may  not  know  what  FASD  is  and  others  may  be  experiencing  their  own  grief  surrounding  the  diagnosis.  If  you  have  been  given  (or  have  found)  good  informaTon  and  resources  be  sure  to  provide  copies  to  family  members  and  supporTve  friends.      Keep  in  mind  that  many  people  may  be  unsure  of  how  to  help.  It  is  important  that  you  make  your  needs  known.  Look  for  ways  to  engage  the  unique  talents  and  experiences  of  your  support  network.  If  you  find  yourself  overwhelmed  with  caring  inquiries  choose  a  few  key  friends  or  family  members  who  can  distribute  updates  to  everyone  for  you.    

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Grief  and  Loss  

Keep  a  list  or  chart  of  who  can  provide  what  support  along  with  their  contact  informaTon.  This  informaTon  will  not  only  help  you,  but  is  also  important  in  the  event  of  an  emergency.      

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Grief  and  Loss  

SupporOng  the  Child  Providing  support  to  child  diagnosed  with  an  FASD  can  be  complex.  As  you  read  through  the  following  secTon  be  mindful  that  due  to  differences  in  development  and  processing  ability  not  all  of  the  suggesTons  will  be  appropriate  for  all  children.    

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Grief  and  Loss  Provide  a  safe  environment  –  Provide  a  safe  and  secure  environment  for  your  child  to  express  their  feelings  and  emoTons  surrounding  the  diagnosis.      Do  not  pressure  the  child  to  talk  if  they  are  not  ready.  Instead,  provide  a  warm  and  open  home  environment  and  model  communicaTon  skills  with  other  family  members.      IdenTfy  and  name  your  emoTons  and  experiences  out  loud  and  listen  to  other  family  members  when  they  do  the  same.    

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Grief  and  Loss  Offer  opportuniOes  to  talk  –  Invite  the  child  to  talk  if  they  want  to,  but  do  not  force  them  to  engage.      Offer  opportuniTes  for  interacTon  that  are  not  focused  around  discussing  grief  and  loss.  Engage  meaningfully  in  conversaTons  about  your  child’s  interests  and  minimize  distracTons  whenever  possible.      If  your  child  does  choose  to  talk  about  grief  do  not  dismiss  or  shut  down  what  they  are  saying.  Support  them  by  helping  them  to  name  their  emoTons  and  work  through  their  ideas  and  experiences.  Listen  to  your  child  and  validate  what  they  are  telling  you.      

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Grief  and  Loss  Engage  in  creaOve  expression  –  If  your  child  struggles  with  verbal  skills  or  does  not  want  to  talk,  offer  opportuniTes  for  creaTve  expression.      Provide  access  to  a  variety  of  developmentally  appropriate  art  supplies,  including  tacTle  items  (suggesTons  include  markers,  play-­‐dough,  sTckers,  colored  paper,  sparkles,  old  magazines  to  cut  apart,  paint,  crayons,  pencils,  pom-­‐poms,  feathers,  glue,  beads,  pasta  shapes  and  buSons).      Allow  your  child  to  freely  experiment  with  these  items  and  talk  to  them  as  they  use  them.  Ask  them  about  what  they  are  making  and  the  choices  they  are  making.  Look  for  opportuniTes  to  talk  about  emoTons  during  the  acTvity.    

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Grief  and  Loss  Emphasize  opportuniOes  –  Encourage  your  child  to  talk  about  the  things  they  would  like  to  achieve  and  experience.      For  older  children  or  teenagers,  try  a  goal-­‐mapping  acTvity  where  you  help  them  to  break  a  large  goal  into  smaller,  achievable  pieces.      For  younger  children,  try  making  a  “dream  board”  with  pictures  that  represent  future  goals.      

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Curious  to  learn  more?  •  Check  out  these  videos  from  the  Alberta  FASD  Learning  Series!  –  The  Ongoing  Face  of  Grief  and  Loss  and  the  Theory  Behind  It  -­‐  hSp://www.youtube.com/watch?feature=player_embedded&v=xh5mhld9R3I  

–  Grief  and  Loss:  Strategic  Support  for  Clients  -­‐  hSp://www.youtube.com/watch?feature=player_embedded&v=SU5oU-­‐Up3gw  

–  Understanding  the  Needs  of  the  Caregiver:  Psychological  treatment  and  intervenOon  -­‐  hSp://www.youtube.com/watch?feature=player_embedded&v=j8edSEnIc0Y  

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References       James,  J.  W.,  &  Friedman,  R.  (1998).  The  grief  recovery  handbook:  The  ac1on  

program  for  moving  beyond  death,  divorce,  and  other  losses.  Harper  Perennial.    Kübler-­‐Ross,  E.,  Wessler,  S.,  &  Avioli,  L.  V.  (1972).  On  death  and  dying.  Jama,  221(2),  174-­‐179.  

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The  Caregiver  Curriculum  on  FASD  •  Title:  Caregiver  Curriculum  on  FASD  (Fetal  Alcohol  Spectrum  Disorder)  2014  •  Author:  Dorothy  Badry  &  Jamie  Hickey  in  collaboraTon  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  InsTtute  

•  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  citaTon  below.    •  CitaOon:  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  InsTtute.  Funder:  Public  Health  Agency  of  Canada.