1. Raising a Child with A Bleeding Disorder Presented by: Jim Messina, Ph.D. Licensed Psychologist St. Joseph’s Children’s Hospital

2. Overview of Presentation 1. Background on Bleeding Disorders 2. 10 Tips for Coping with your Child’s Bleeding Disorder 1. Be Informed 2. Advocate for your child 3. Grieve and Let Go of Dream Child 4. Let go of guilt! 5. Role Model Healthy Choices 6. Empower don’t Enable! 7. Avoid Entitlement 8. Learn to say NO! 9. Listen to your Child 10. Be a PATHFINDER! 3. Resources: www.coping.orgwww.coping.org

3. What are the Bleeding Disorders? Hemophilia A - factor VII-80% Hemophilia B - factor IX-15% Von Willebrand Disease Other Clotting Disorders

4. Signs a Child has a Bleeding Disorder When a baby starts to crawl the parents may notice bruises on stomach, chest, buttock, and back The baby may also be fussy, not wanting to walk or crawl Other symptoms include: long nosebleeds excessive bleeding from biting down on the lips or tongue excessive bleeding following a tooth extraction excessive bleeding following surgery blood in the urine

5. What is Hemophilia? There are two types of Hemophilia, A and B Both are caused by deficiencies in the amount of clotting factor in the blood (VIII or IX) When the blood does not have enough of one of these or is missing one clotting factor, the bleeding may end very slowly or may not stop at all The most dangerous part about having Hemophilia is internal bleeding - If internal bleeding is left untreated it can lead to deformity, disability or even death In people with Hemophilia the bleeding continues until either it clots long enough for it to heal or the person will bleed to death

6. What is von Willebrand Disease? Von Willebrand disease is caused by a deficiency or an abnormality in a protein called von Willebrand factor and is characterized by prolonged bleeding A substance in the blood known as von Willebrand factor helps platelets stick to damaged blood vessels Another function of von Willebrand factor is to carry the important clotting protein, called factor VIII, in the blood People with von Willebrand disease have a problem with one or both of these blood components.

7. Clotting

8. Genetic Transmission of Hemophilia A & B Hemophilia is a genetic disease passed on by the X chromosome (the chromosome that carries the clotting factor) If a boy gets the X chromosome that carries the hemophilia gene he will get hemophilia If a girl gets the gene, she will become the carrier of the gene, not showing symptoms of the disease though she may have a long or heavy menstrual cycle The carrier has a 50% chance of passing the gene on to her children every time she gets pregnant

10. Average Life Span of People with Hemophilia YearAverage age at the time of death Treatments available at time Before 1938 11none Before 1968 20Plasma or Whole blood transfusions 1968 Less than 40Cryoprecipitate 1983 64Freeze dried clotting factors 1988 40 ( impact of aids)Same 1999 and on Normal life spanFactors produced by genetic engineering

11. Average life span

12. Medical Costs of Having a Child with Hemophilia Because Hemophilia is a life long disease your child has a need for life long treatment It will cost any where from $75,000 to $125,000 a year to treat severe hemophilia That is approximately 31 times an average non- hemophiliac pays for health care over the course of a year

13. This is a diagram of the joints most commonly affected by Hemophilia. It most often occurs at the knees, hips, ankles, shoulders, and elbows

14. The most common muscles that bleed with Hemophilia are those in the the upper arm, upper leg (front and back), the calf and the front of the groin

15. for Parents of Children with Bleeding Disorders 1. Be as informed and current as you can about the Bleeding Disorder! Know the language and issues involved so that you can know what to do, where to go, and whom to get involved. Look at www.coping.org for online internet resources available for you www.coping.org

16. Get Support for Yourself Get involved with your local chapter of the Florida Hemophilia Association Join a community support program either online or in person Get involved with First Steps

17. for Parents of Children with Bleeding Disorders 2. Recognize you are the 24/7 expert on your child and advocate for your child with this understanding!

18. Precautions to Take with Other Caregivers of Child Be sure that anyone who is responsible for your child knows that he or she has a bleeding disorder Talk with your child’s babysitters, daycare providers, teachers, other school staff, and coaches or leaders of after school activities about when to contact you or to call 9–1–1 for emergency care Consider having your child wear a medical ID bracelet or necklace. If your child is injured, the ID will alert anyone caring for your child about the condition.

19. for Parents of Children with Bleeding Disorders 3. Grieve and let go of your “dreamed for child” and accept your child for who he or she is including the limitations of the bleeding disorder which is involved in your child’s life!

20. Preventive Measures for with Bleeding Disorders Learn how to examine your child for and recognize signs of bleeding as well as prepare for bleeding episodes when they do occur Keep a cold pack in the freezer ready to use as directed or to take along with you to treat bumps and bruises Popsicles work fine when there is minor bleeding in the mouth You also might want to keep a bag ready to go with items you will need if you must take your child to the emergency room or elsewhere

21. for Parents of Children with Bleeding Disorders 4. Let go of your Guilt for being the Genetic Transmitter of your child’s condition and move on emotionally to be better focused on your child’s emotional, physical, social, and interpersonal needs

22. What Kids with a Bleeding Disorder Need In addition to treatment and regular health and dental care, your child needs information about the disorder that’s at his or her level Children with these disorders also need to be reassured that the condition isn’t their fault and given support for having a chronic health problem.

23. for Parents of Children with Bleeding Disorders 5. Reorganize your life and interests around “role modeling” of a life which is healthy for your child: Exercise, Athletics, Hobbies, Socialization, Spirituality, Community Involvements, Academics, and peer networks

24. Protective Measures for Kids with Hemophilia Kids with hemophilia need extra protection from things in the home and elsewhere that could cause injuries and lead to bleeding: Protect Toddlers with kneepads, elbow pads, and protective helmets Be sure to use the safety belts and straps in highchairs, car seats, and strollers to protect the child from falls Remove furniture with sharp corners or pad them while the child is a toddler Keep out of reach or locked away small and sharp objects and other items that could cause bleeding or harm Check play equipment and outdoor play areas for possible hazards All children should wear safety helmets when riding tricycles or bicycles

25. Exercises and Activities for Kids with Bleeding Disorders Some safe exercises or activities are swimming, baseball, track, tennis, biking, and walking Football, hockey, wrestling, and weightlifting (heavy weights) are not safe activities if one has a Bleeding Disorder Always check with child’s doctor before starting any athletic program

26. for Parents of Children with Bleeding Disorders 6. Empower 6. Empower your child! Do not enable your child. Children with Bleeding Disorders need to be encouraged to “become all that they are capable of becoming” and not to fall into the trap of feeling sorry for themselves and limiting their vision of whom they can become in this world!

27. Children with Bleeding Disorders Can lead Normal Lives! Aside from the precautions involved concerning bleeding, there is nothing else which children with a bleeding disorder cannot do! So encourage them to do so! DO NOT allow your children to feel sorry for themselves! DO NOT fall into being over sympathetic with them-Push them to stay in the mainstream of life! Require your child to become a personally responsible human being by being a Pathfinder to your child!

28. for Parents of Children with Bleeding Disorders 7. Do not fall into the “Entitlement Trap!” There are so many “perks” from provider companies these days like: parties, dinners, “get aways,” camps, tickets to sporting events etc, that one can fall into the trap of “expecting” something every time there is a “bleeding disorder” related happening in your child’s life – Be cautious not to accept advice from those who indulge you with “stuff”

29. The Importance of Maintaining Integrity! We know that it is costly to provide for the medical well being of your child with a bleeding disorder We know there are many organizations out there wanting your “business” You are the “boss” of yourself and your child’s life and do not let others control your decisions about your child’s needs

30. for Parents of Children with Bleeding Disorders 8. Learn to say “NO!” to your child so that limits and boundaries are clearly set and maintained to insure that your child does not become a “spoiled brat!”

31. “Spoiled Brat” Prevention Strategies Establish and enforce clear, mutually agreed upon, and recorded limits and boundaries Put limits on time focused solely on kids Put limits on money spent only on kids Put limits on use of external resources used only on kids Put limits on use of internal resources used only on kids Put limits on emotions spent only on kids

32. for Parents of Children with Bleeding Disorders 9. Listen to your child’s verbal and nonverbal communications about the realities of having the bleeding disorder and the impact it is having on your child’s life

33. How to Listen to “Bleeding Disorder” Reaction from Child Listen effectively Focus on feelings Clarify what child is saying Be rational in all discussions Do not make comparisons to other kids Don’t jump to assumptions Do not belittle or make fun of your child Do not put words in your child’s mouth

34. for Parents of Children with Bleeding Disorders P Principles A Activating T Tracking H Hugging F Formulating I Intervening N Negotiating D Discussing E Establishing R Releasing 10. Become a Pathfinder!

35. Parenting Principles A T H F I N D E R

36. Pathfinder’s Foundational Principle Be CONSISTENT! Get spouse, relatives and friends on board with Pathfinder Parenting Principles! TEA System Based Principles Thoughts - must get rational Emotions - must feel more rational Actions - take Actions only after Thoughts and Emotions are rational and in synch

37. P Activating Self-Esteem T H F I N D E R

38. Activating Self-Esteem Developmental focus over kid’s lifetime Encourage personal responsibility taking Promote productive lifestyles Unconditional love and acceptance Life skills training and building Respect as individuals Encourage self-direction

39. P A Tracking Structures H F I N D E R

40. Tracking Structures Self-care Environment Chores Electronics Family phone Time management Finances Recreation Academics Outside relationships Family relationships Family meetings

41. P A T Hugging for Bonding F I N D E R

42. Hugging for Bonding Build sense of security Give sense of being wanted Establish healthy self-worth Use physical touch and hugs Use verbal touches and hugs Transmit unconditional love Create emotional connectedness

43. P A T H Formulating Consequences I N D E R

44. Formulating Consequences Natural consequences are best Logical consequences next best Thinking person’s method of discipline Enforce the consequences with no screaming, yelling, ranting or raving Get them recognized, agreed to, contracted, outlined and recorded Then remind and enforce them

45. P A T H F Intervening in Kids’ Losses N D E R

46. Intervene in Kids’ Losses Coping with realities of bleeding disorder Coping with limitations involved Coping with other losses common in children’s lives today: divorce, step- parents and step-families, moving and relocating etc

47. P A T H F I Negotiating and Advocating for Kids D E R

48. Negotiating & Advocating Linkage, Brokering, Mobilization, Activating: teachers and school officials coaches and activity leaders community officials members of extended family non-supportive, non-pathfinder parent

49. P A T H F I N Discussing and Communicating E R

50. Discussing & Communicating Don’t compete as to who knows more Respond with understanding Make time for discussions with child Use “I” statements not “You” statements Maintain sense of humor with child Describe behaviors not the child as being unacceptable Stay focused on the “here and now” Control temper in discussions Use “open ended” questions Do not use “door closer” statements Help point out when child’s actions are not consistent with child’s words

51. P A T H F I N D Establishing Healthy Boundaries R

52. Establishing Healthy Boundaries Maintain individual identity Know difference between love and sympathy Ignore helplessness & neediness of kids Get rid of need to be needed Don’t personalize child’s problems Let go of fear of negative outcomes No idealism or fantasy thinking Do not get emotionally hooked Respect each other’s personal rights

53. P A T H F I N D E Releasing Shame and Guilt

54. Releasing Shame & Guilt Let go of anger in healthy ways Let go of need to control, fix & change Let go of guilt for not being perfect Let go of shame for past failings Self forgiveness for mistakes you have made with kids

55. What Next? Have a look at Pathfinder Parenting and the other Parent Tool Box resources for you at www.coping.orgwww.coping.org Get involved with your local chapter and support groups Make a commitment to become the best parent you can become for your children!

56. Thank You for Coming