Advocating for Your

Child Saturday 2:00 to 2:50 pm

PLEASE  HOLD  YOUR  QUESTIONS  AND  COMMENTS  UNTIL  THE  END  OF  THE  TALK.  

   WE  WILL  PROVIDE  TIME  FOR  DISCUSSION  AT  THE  

END.      

As  you  think  of  quesDons  and  comments  during  the  session,  write  them  down  on  an  index  card  and  the  moderator  will  collect  them.  We  will  do  our  best  to  address  all  quesDons  as  Dme  permits.  We  will  also  send  you  informaDon  using  the  email  you  provided  

during  sign-­‐in.  

Advocacy  

Deborah  PaSerson  and  Sharon  Link  O'Shaughnessy  

Tool  Kit  for  a  Good  Advocate  

Remember,  you  know  your  child  beSer  than  ANYONE!!!  

!  Commitment  

!  Flexibility    

!  Resiliency    

!  PosiDve  aVtude    

!  PaDence  

!  InformaDon  

!  OrganizaDon  

How  to  Educate  Yourself  •  Read  enough  so  that  you  can  educate  others  

•  Resource  page  at  Narcolepsy  Network  website,  Google  Scholar,  Library  etc.    

•  Seek  out  people  with  more  experience  

•  Hard  facts  are  important  

•  Professionals  are  more  likely  to  respond  to  scienDfic  informaDon  

•  EmoDonal  appeals  and  anecdotes  can  be  helpful  with  allies  

Ge8ng  Organized  • Get  it  in  wriDng  and  keep  copies  

• Keep  up-­‐to-­‐date  info  on  the  child's  condiDon  in  separate  folder    

• Keep  a  record  (real  or  virtual)  of  communicaDons  with  each  important  person  or  group  

• Keep  an  ongoing  record  of  anything  related  to  the  child  

•  New  symptoms,  medicaDon  authorizaDons,  notes  from  teachers  about  upcoming  acDviDes,  quesDons  you  have  for  the  next  doctor's  appointment,  phone  messages  etc.    

•  You  never  know  when  you  will  need  this  informa@on,  but  when  you  do  you  will  be  glad  you  have  it!!!!!!  You  cannot  rely  on  memory  alone,  over  @me  memories  fade!  

 

How  to  Educate  Others  

Have  printed  handouts  to  give  family,  educators,  etc.    

1.  Narcolepsy  brochure,  leSer  from  doctor  

2.  Notes  on  how  narcolepsy  affects  YOUR  child  

Give  examples,  keep  it  short  and  sweet  

3.  Ask  for  feedback-­‐  has  the  person  observed  symptoms?  

4.  Dialogue  about  how  to  solve  problem(s)  TesDng,  projects,  field  trip  forms,  sleepovers,  spending  Dme  with  

relaDves,    bus  rides,  sports,  clubs,  etc.    

 

 

Informal  Advocacy  Skills  1. Don’t  be  inDmidated  

2. Try  to  resolve  informally  

3. Know  your  Rights  (to  see  regulaDons,  etc.)  

4. Find  the  person  with  power  to  make  change  

5. Problem  solve  

6. Remember  that  you  can  appeal  

7. Keep  accurate  notes  

8. Establish  and  nurture  contacts  

9. Contact  others  with  more  experience    

 

 

Always  Keep  in  Mind  

Be  polite  and  courteous  

Be  on  Dme  and  respect  reasonable  Dme  limits  

Keep  your  frustraDons  in  check  

Try  to  never  need  to  raise  your  voice  

Focus  on  why  you  need  the  person  to  act  

Stay  calm  and  carry  on  www.elc-­‐pa.org  

Where  is  Advocacy  Needed?  

•           A.  With  your  child,  other  family                                        members  and  friends  

•           B.  Medical  professionals  

•           C.  School  

•           D.  Religious  and  Social  organizaDons  

•           E.  Strangers  

Advocate  To  Your  Child  1.  Encourage  your  child  to  use  “self  help”  skills  and  to  network  with  other  PWNs.    

2.  Stress  that  this  will  help  them  to  negoDate  for  things  they  will  need  to  be  successful.    

3.When  others  see  that  they  are  acDvely  working  to  help  themselves  they  will  be  more  willing  to  help  them.  

Self-­‐Help  Skills  for  your  Child  Schedule  sleep  periods  

Eat  a  healthy  diet  and  learn  relaxaDon  techniques  

Exercise  

Avoid  caffeine,  alcohol,  and  nicoDne  

Avoid  OTC  drugs  that  cause  drowsiness  

Alert  others  to  your  diagnosis  as  needed    

Break  larger  tasks  into  smaller  tasks,  easier  to  finish  

Avoid  dangerous  acDviDes,  wear  medical  alert  device  

 

Advoca@ng  Within  the  Family  

•  Respect •  Balance

•  Resiliency •  Understanding

Advocacy  in  the  Medical  Se8ng  •  KEEP  RECORDS  and  follow  DEADLINES.  

•  Be  vocal  but  polite.  

•  Do  everythingEducate  yourself,  stay  informed,  and  remember:  You  know  your  child  be1er  than  anyone.  

•   you  can  to  make  their  job  easier.  

•  If  you  hit  a  roadblock,  search  for  alternate  providers.  

•  Your  child  may  be  an  obstacle  -­‐  Try  to  become  a  “team”  and  work  together.  Children  generally  appreciate  your  efforts  later.  

           Medical  Alert  Bracelets  and  Card  •  Your  child  should  have  one  of  these  with  them  

or  a  similar  idenDfier.  It  can  also  be  used  to  help  educate  others-­‐  even  medical  professionals.  

Advocacy  in  the  School  Se8ng  !  Remember:  Collaborate,  don't  alienate!!!  

•   Child’s  age  determines  your  role.  

•                 IDEA  –  IEP-­‐  Advocacy  101  (Sat.  3-­‐3:50)  

•                 504  Plan  

–  SAT  and  ACT  –  Sunday  2-­‐2:50  pm  

–  TransiDoning  to  college  –  Sunday  9:10-­‐10:00  am  

–  Graduate  School  –  Saturday  4-­‐5:00  pm    

   

 

Possible  Accommoda@ons  •     Late  Start  

•     Extra  Dme  on  tests  

•     Core  classes  before  lunch  

•     Get  up  and/or  walk  break  

•     Note  taker  and/or  use  tape  recorder  

•     Remember  social  interacDon  accommodaDons  

•     WriSen  communicaDon  beSer  than  oral  

•     Specific  accommodaDons  for  YOUR  child  

•     Accommoda<ons  session  Saturday  3-­‐3:50  pm  

Remember  Social  Concerns  •  Always  remember  that  your  child  does  not  want  to  be  DIFFERENT!  

•  Lay  groundwork  to  insure  they  are  treated  with  respect  and  understanding  by  other  adults  and  their  peers.  

•  Remember  that  your  child  is  also  learning  to  accept  their  condiDon  and  its  consequences  just  as  you  are.  PaDence  is  useful.  

•           Sunday  10-­‐10:50  Sex,  Da<ng,  Rela<onships  (Youth  &  YA  16  to  26  ONLY)  

Advoca@ng  in  Social  Se8ngs  1.   Advocacy  can  be  rewarding  for  your  child  at  places  

 other  than  in  the  medical  or  school  seVng.  

2.   Skills  learned  in  medical  and  school  seVng  will  help    you  advocate  at  your  religious  insDtuDon,  sports      teams,  club  meeDngs,  sleep  over's,  visiDng            relaDves,  etc.  

3.   Stay  alert  to  safety  concerns.  

4.   Be  firm  about  what  your  child  needs.  

5.   Encourage  these  acDviDes.  They  can  be  less  stressful    and  very  enjoyable  for  your  child  

•     

 

 

•     

Advocacy  and  Strangers  

•  There  will  be  certain  circumstances  that  will  offer  an  opportunity  to  advocate  to  strangers.  

•     1.    Provide  accurate  informaDon.  

•    2.    Use  the  opportunity  to  educate.  

•    3.    Make  sure  your  child  is  treated  with                      understanding  and  respect.  

•           4.  ShaSer  myths                      

Remember:  o  Take  care  of  yourself  to  remain  strong  for  your  child.  

o  Keep  a  sense  of  humour    

o  Your  child  may  not  appreciate  the  humour.    ☺"

o  Stress  with  your  child  that  your  advocacy  is  to  support  him,  not  spite  him.  Always  remember  your  child  doesn’t  like  being  DIFFERENT!  

o  Your  child  may  not  appreciate  your  efforts.    Do  it  anyway.  Time  has  a  way  of  changing  their  opinions.  

o  Encourage  your  child  to  network  with  other  PWNs  and  always  encourage  their  efforts  at  self  advocacy!  

 

Self-­‐Advocacy*  The  most  important  thing  you  can  do  for  your  child  is  “model”  effecDve  advocacy.  

As  your  child  grows  their  role  as  a  self  advocate  will  increase  and  your  role  as  their  advocate  will  decrease.  

The  end  result  will  be  an  adult  who  will  be  able  to  advocate  effec@vely  for  themselves  and  that  will  be  a  job  well  done!            

                                         *occurring  in  youth  session  now*  

 

How  to  be  an  Effec@ve  Advocate  

A.  Educate  yourself    

B.  Share  what  you  have  learned  with  others  

C.  Always  seek  to  create  a  collaboraDve  relaDonship  and  avoid  adversarial  relaDonships.  

Resources  !  Narcolepsy Network's Educational Materials and

Resources for Students !  Physicians !  School nurses !  Bus drivers !  PWN families !  Other Narcolepsy

organizations

QuesDons?    Comments?    Discussion?  

NETWORK!!!