Candace Ireton, MD Kimberly Schmidt, LCSW

1. EDS & Parenting Candace Ireton, MDKimberly Schmidt, LCSW

2. Parenting & EDS • Goals • To Provide Validation • To Share Ideas • To Support Each Other • To Challenge you • Consider these points of view: • Parent with EDS • Child/children with EDS • Parent/s and child/children have EDS • Primarily referring to non-VEDS types

3. Conflict of Interest: Neither presenter has any financial relationship with a commercial interest that might affect the content of the presentation • The views presented in this discussion are solely the views of the presenters, and have not been reviewed or endorsed specifically by EDNF.

4. What makes a “good parent” • “Parenting refers to the activity of raising a child rather than the biological relationship.” Davies, Martin (2000). The Blackwell encyclopedia of social work. Wiley-Blackwell. p. 245. • Parenting Models/Styles • “Authoritarian”, “Wet Clay”, “Dictator”, “Permissive”, “Child Centered”, etc. • “Patchwork Parenting”—we patch together our own style, and we evolve over time • Potential influences on parenting style (positively or negatively) • Parents as role models • Family, friends • TV/Movies • Reading, internet etc.

5. Additional Parenting Challenges with EDS • Energy • Finances • Advocacy • Family Balance • Prioritizing needs • Measuring up to “Supermoms” • Fear

6. Challenges, cont. • Childcare/trusting others to look out for your child • Protective vs overprotective • Anger/jealousy/guilt/sadness • Judgement from others within/outside the family • “Advice” from others

7. Guilt & EDS • Affected Parent--- • Due to illness/inability to fulfill “normal” role in family • Due to having passed it on • Prior to your diagnosis (didn’t know there was a risk) • After your diagnosis (knowingly took the risk) • Affected Child— • Inability to fulfill parents’ expectations—grades, sports • Needing extra attention • Medical expense • Slowing family down • Non-affected Siblings • Not having disease • Being angry with other child and/or parent for being ill

8. Function of Guilt • In evolutionary psychology, guilt is thought to “compel us to altruistic action, allowing us to empathize with and then help those in need.” • “Guilt sometimes prods healthy family members to get their sick relatives treatment, and sometimes causes them to withdraw and distance themselves.” • The Heaviest Heart: Guilt and Genetic Disease, By RUSSELL GOLDMAN (@GoldmanRussell), March 24, 2009.

9. Managing Parental Guilt • What function does guilt have for you? • Motivator • Self punishment • Does your guilt “zap” your energy? • Could you use that energy in a more positive way? • How is guilt affecting your relationships? • Self-forgiveness • Positive things about having EDS in the family • May bring family closer as you tackle challenges together • Your children learn to empathize with others • “Give back” by sharing your experiences, tips and tricks with others

10. “Mom, you always say that and you never get it done” • Helping your child understand and live with EDS (yours and/or theirs)

11. Age appropriate information (you know your child best) • 0-3—attachment/absence • 3-6—”center of the universe”, worry about having caused parent’s illness • 6-9—concrete info about illness, fear of parent dying • 9-12+—embarrassment, moodiness, helpfulness, avoid “lectures” • Be honest, open—even young kids usually sense when something is wrong or when we aren’t telling them the whole truth. • Prepare them for procedures (if something is going to hurt, don’t lie!) • Don’t make promises/plans that you can’t keep • Treat them as “normally” as possible • Discipline/household rules • Assign chores suitable for their energy and ability level • Expect them to work hard in school

12. Involve your child in decisions and creative problem solving • School • Healthcare • Develop realistic expectations/flexibility • Playing catch outside vs sitting in bed playing scrabble • Assign another family member to attend ballgames or dance performances • Maybe your child won’t follow in your footsteps as a fighter pilot… • Parental resilience—”No one can make you feel inferior without your consent” Eleanor Roosevelt • “You’re the worst mom ever” • Reframe: “It’s not me, it’s the disease they are angry with” • Correct bad behavior, but don’t take it personally • Role Model • Show pride, confidence, positivity, flexibility, self-forgiveness, problem-solving

13. Asking for help • Formal counseling • Individual, family • Specialist in chronic pain/disability • Finding the “right fit” • Make your specific needs clear • Friends, family, religious groups, community foundations, etc • Some will not be as helpful/supportive as you expect • Use technology • Email • Care pages • Facebook

14. It’s ok to take care of yourself!

15. How the non-EDS parent can help/what we wish you knew  • Model caring, understanding behavior • Flexibility • Believe • Ask • Anticipate • Forgive • Know that we appreciate you!

16. To diagnose or not to diagnose my child with EDS Effect on how you treat the child Effect on how child perceives himself/herself Will they become fearful, lazy or manipulative? Will they become proactive? Denial Parent as role model Potential for preventive care Insurability Imposing limitations? Sports Career Activies

17. Dealing with healthcare professionals--Advocacy The missing chapter in the baby book… • YOU are a key piece of the healthcare team! • YOU know your child best. • Don’t assume provider understands EDS • Remain CALM but direct and assertive

18. Dealing with healthcare professionals The Office Visit • Ask for extended appointment • Bring or list all meds/doses • Keep typed, updated list of medical history, procedures, test results • Make a written list of concerns, questions prior to appt. • Let child speak first if able, fill in the blanks

19. Dealing with Healthcare Professionals The Office Visit, cont. • Share your research, but don’t expect them to review during appointment • Ask for printed results of all tests, CD/DVD of all radiology/procedures • No news is not good news, it’s no news…ALWAYS ask for results…never assume a test is negative if they don’t call you!

20. Dealing with Healthcare Professionals Hospital Stays • Stay with your child in hospital if at all possible • Ask questions, write questions down so you’re ready when the team comes by • Take care of yourself • Eat, hydrate • Bring your meds • Blanket, memory foam mattress • Snacks, books/magazines • Computer, phone/chargers • Notebook/pen • Patient advocate

21. What does it feel like to have EDS? • Common symptoms • Pain • Chronic vs acute • Description of pain • Instability • Fatigue—”depletion” • Psychological effects • Other—you name it… “Princess and the Pea” • Fluctuation in symptoms—minutes, hours, days • Variation even among siblings • ASK! (and believe)

22. Treating Pain in Children • Assessing pain in children can be difficult • Pain Management Team approach • Pain medication best managed by experts…general pediatricians and family physicians receive very little training in pediatric pain management • Pain management doesn’t just equal medication • Physical and occupational therapies • Massage, accupuncture etc. • Don’t necessarily avoid pain medication in children

23. Educational Issues • Educating school employees • Who • What • Possible modifications • Length of school day • Rest time in nurse’s office • Specific tools • Pens/pencils • Rolling backpack • Extra test time

24. Educational Issues, cont. • Possible modifications, cont. • Enlarged text • Computer for note/test-taking • Book holders • Hand graded tests—check marks instead of filling in bubbles • Extra set of books at home • Aide to carry books • Record lectures • Modified gym class • Formal educational planning: IEP, 504

25. Sports participation • Medical clearance • Educate coaches • Preventive PT

26. Siblings • Spend individual time with each child • Small child/parent abscence—stuffed animal or special blanket • Ask/listen to their concerns • Expect anger/jealousy • Caution re: rough play, careful not to blame injuries on them • Enlist others to attend events if you can’t make it

27. Deciding whether or not to have a baby… • Physically able? • What’s the risk of passing EDS on to my child? • Genetic counseling • Assess risk of passing EDS on • Help you identify your ethical views,family goals, support systems • There is NO clear, simple answer….

28. Newborn issues… • Breastfeeding • Immune benefits may be even more important in EDS kids • Vary holds, use support pillows • Maternal nourishment/hydration • Hormonal effects of breastfeeding may prolong laxity • Carrying baby • You may be more prone to tendonitis, nerve compression • Slings/carriers • Extra support/help in the home • Help caring for baby, sibs, and even yourself

29. Your Challenge • Do the best you can with what you’ve got • Ask for help • Support each other • Be forgiving • Decide what’s REALLY important in YOUR life • Write down 5 things each day that make you happy • Learn to say NO, give yourself grace for doing it 9you never treat someone else the way you treat yourself) • Surround yourself with supportive people, limit contact with “energy drainers”.

30. Create a new definition of health Being healthy does not necessarily mean there is an absence of illness. It means being as complete as possible and living life as fully as possible in spite of the hand you may have been dealt.