Advocating for Your Child - Narcolepsy Network · 2018-11-16 ·...
Transcript of Advocating for Your Child - Narcolepsy Network · 2018-11-16 ·...
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!!!