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TWK National Convention
- 1. Talking with Kids about HD Presented by: Cori Robin, LCSW Social Worker at Rush Center of Excellence and HDSA Illinois Chapter Karen Baker, LICSW Social Worker at HDSA New England Region
- 2. Presenter Disclosures Cori Robin and Karen Baker The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months: No relationships to disclose or list Gratitude Many thanks to the HDSA Talking with Kids Workgroup that created the Family Guide Series Brochure on this topic: Karen Tarapata, Karen Baker, Emily De Los Reyes, Martha Driessnack, Nelson Inz, Shana Martin, Brad Murdock, Cheryl Sullivan Staveley, Janet Williams, Lindsey Zan and Jane Kogan
- 3. • The information provided by speakers in workshops, forums, sharing/networking sessions and any other educational presentation made as part of the 2013 HDSA Convention program is for informational use only. • HDSA encourages all attendees to consult with their primary care provider, neurologist or other healthcare provider about any advice, exercise, medication, treatment, nutritional supplement or regimen that may have been mentioned as part of any presentation. Disclaimer
- 4. Modules 1. Reasons to Talk to Kids 2. First Conversation 3. Differences by Age 4. Ideas for Answering Tough Questions 5. Building Your Support Network 6. School and Social Life 7. Juvenile HD and the School Environment 8. Children and Teens as Caregivers 9. Dating and HD 10.Living At-Risk 11.Genetic Testing 12.Social Media 13.Counseling 14.Videos
- 5. Reasons to discuss HD with kids • Kids are receptive and understand difficult topics faster than we know • Access to online information either at home, school or friends’ houses • Develop sense of trust • Create safe space to ask questions, express feelings • Enhance feeling of security
- 6. A Video from HDYO Videos from HDYO can be found at: www.hdsa.org/hdyofeed
- 7. Remember…. • Don’t put pressure on yourself to have THE ONE BIG TALK – Make it your goal to simply start the conversation and listen as much as possible • Make yourself as informed as possible about HD – Through your local chapter, www.hdsa.org, support groups, etc. • Write down and practice what you will say • It’s OK to not have an answer to everything: let your child know that you are there and will find the answer if you don’t know it
- 8. Remember…. • Don’t cover everything at once – Leave time for them to process small bits of information • Use your own words and pay attention to the child’s age and maturity level • Remember this is unchartered territory for you: the best you can do is do your best! “A person who never made a mistake never tried anything new” ~ Albert Einstein Back to Table of Contents
- 9. Logistics for the First Conversation • Choose a time and place with the least amount of interruptions or distractions • Tell your child you want to talk to them about something important • Turn off cell phones, iPads, iPods and any other electronic distraction • Have something fun or calming planned for afterwards as this is bound to be emotional for both of you • If your children are different ages, different maturity levels or react in different ways from one another- it may be beneficial to have one-on-one talks with each child by themselves (use your discretion or problem solve/discuss this with your local HDSA social worker)
- 10. What do we say? • Be honest – Let them know there is a history of HD in the family – Tell them what is going on currently with their affected family member and how HD may explain certain events – Discuss their current care from doctors – Stick to the here and now and only discuss longer term issues if asked during first conversation
- 11. What do we say? • Prepare to Listen – Helps you understand their feelings and what they need right now – Encourage your child to talk and use active/responsive listening (avoid distraction; use body language and gestures to convey attention; reflect and provide feedback by paraphrasing)
- 12. What do we say? • Be patient – Allow time for them to process the words you are saying • Be open to questions – Let them know that you genuinely want to know their concerns, questions, thoughts, fears (positive or negative) – If you don’t know the answer, state that you will try to find it – Let them know that this is just the start to an ongoing conversation and no question is off limits
- 13. What do we say? • Future talks – Do not push your child to react; if they need time and are not yet ready to respond or share their feelings, give them time and try again another time – Remember that every person is unique and has their own way of coping, even within the same sibship – Create an atmosphere of openness and transparency so they will feel comfortable opening up in the future
- 14. What do we say? • Avoid too much information – Keep the focus on the present and near future – Avoid discussion at first conversation, if possible, of at-risk status/gene inheritance, disability and death (unless they ask questions about this directly)
- 15. What do we say? • Reassurance is key – Any form of predictability or certainty of support will make them feel calm – Amongst this shock, it’s crucial to help the child feel safe – Use statements such as: • “No matter what happens, never forget that there are people who care about you.” • “I may not know the answers but together we can try to find them.” • “I will do my best to listen to you whenever you want to talk.” Back to Table of Contents
- 16. Conversation Starters by Age • Stay attuned to age (developmental stage and maturity) and child’s personality style • Younger Children (preschool and lower elementary) – Short attention span= keep statements short and simple – Use concrete examples – Listening and playing may bring out more questions and conversations than just talking – Pay attention to their drawing, games and play to potentially learn about their feelings – Often easier to discuss serious topics through characters in a play situation – Ex: “There will be changes because of her sickness, like taking a little more time to eat dinner, but she will always love you. That doesn’t change”.
- 17. Sample Statements for Young Children • “I want to talk to you about something important. The doctor told me that [name] is sick. She has Huntington’s disease. It is a disease that makes it harder for her muscles and brain to do their work.” • My sickness is going to eventually make it harder for me to do some things. It may take me more time to eat my dinner and it may be harder for me to play with you.” • Please review the HDSA Talking with Kids publication and consult with your presenter or HDSA social worker for additional sample statements
- 18. Older Children • Upper elementary and middle schoolers are able to understand more about HD and are usually capable of participating in conversation • Consider giving them HDSA (www.hdsa.org), NYA (www.hdsa.org/nya) or HDYO (www.hdyo.org) written material to read and write down questions • Your local support group may have other children/teens that are looking for support and can thus break off from the larger group to form a youth group
- 19. Sample conversation starters for older children • “I want to talk to you about something important. I found out that [name] is sick and has Huntington’s Disease. It’s not a disease you can catch, like a cold. It is a genetic disease that he/she was born with. HD affects his muscles and his brain. I wanted to tell you this right when I found out, because you are a smart kid who notices things.” • Please review the HDSA Talking with Kids publication and consult with your presenter or HDSA social worker for additional sample statements
- 20. Teens
- 21. Teenagers Assess readiness and maturity level as emotions and responses may go up and down from day to day…. “I want to talk to you about something important. I found out that I have Huntington’s disease. It is a genetic disorder that was passed on to me from your grandma. It will eventually affect my muscles and brain. I wanted to tell you right away so that we can work through this as a team and so you can help mom if she needs support or some help around the house.” “Because of this disease, she may have a hard time with some things. She may forget to do things she promised to do. You may notice that her hands shake sometimes and she may become very angry and you won’t know why.” Please review the HDSA Talking with Kids publication and consult with your presenter or HDSA social worker for additional sample statements
- 22. First Conversation - Points to Include: • A simple explanation that there is a family history of HD • How the affected person’s HD symptoms may affect the child’s life at this current moment • Reassurance that the child is valued and supported • A description of something they can do to help- something tangible • An offer to listen to their questions or concerns • The expectation that there will be future conversations Back to Table of Contents
- 23. Ideas for Answering Tough Questions Often, questions may come forth that are difficult to answer. Here are some ideas of ways to respond…. It might also be helpful to chat with other parents to explore what was particularly useful or helpful for them when having these conversations…
- 24. Is mom/dad going to die from HD? • People can live for many years, even decades, with Huntington’s disease. It’s important that we continue to encourage [name] to go to their doctor appointments to get the best care possible. We don’t know for sure when any of us will die. Instead, we focus on living our best life now.
- 25. How did mom/dad get HD? • When mom/dad was born, she/he inherited the mutated gene that causes HD from her/his parent.
- 26. What did I do to make [family member] behave this way? • The behavior is caused by HD, not by anything you did. [Affected family member] loves you, and HD does not change that. Even if [name] may say funny things sometimes that don’t sound right, you need to know that they always love you. Back to Table of Contents
- 27. Am I going to get HD? • Every child of a person with HD has a 50/50 chance of developing the disease, but there are a lot of very smart scientists looking for treatments and a cure. • If you are concerned about this, we can talk with the doctor so that you fully understand and we can always continue to talk about how you feel about this.
- 28. Are my brothers/sisters going to get it? • They have the same 50/50 chance that you do.
- 29. Why can’t I just get the test now? • I know sometimes it is easier to just know right now- like ripping off a Band-Aid. However, getting a test for the HD gene doesn’t tell you when you might get symptoms. Some people develop HD late in life. • If you want to talk about the test with a genetic counselor, we can make an appointment at an HDSA Center of Excellence or call our HDSA Social Worker. • However, if you decide that you want to get tested, you won’t be able to do so until you are 18.
- 30. Why isn’t there a cure? • Scientists are working very hard to find one. There are research studies that members of an HD family can participate in that may help to find treatments and a cure. We can talk about whether that is something you want to do or not- it is up to you.
- 31. I’m a kid. How am I supposed to handle this? • You need to know that you are not alone. There are a lot of family and friends around that care about you and there are also other adults, like doctors and counselors that are there to help. • The National Youth Alliance and HDYO are also there for kids like you from all across the country and the entire world. I am always here for you and will try to answer any questions you have. • If you want, we can look up the HDYO and NYA websites now and see what they have available for you.
- 32. What will happen to us as your illness gets worse? • We will have to make some difficult decisions as a family together, but we will work as a team the entire time. When I eventually have difficulty walking or talking, dad may need your support in taking care of me. Please remember to tell dad if you are feeling overwhelmed or need a break. We can also work with a HDSA social worker to know what to expect and can plan for the future together.
- 33. Watch your responses…. Conversation stoppers • Kids are resilient and perceptive! • Responses that are dismissive or dishonest can cause children to isolate • Ex: “That’s ridiculous! You know that is not true” or “How on earth can you feel like that?” • Parents need to check their own anxieties and feelings before responding – Seek support to cope with any “taboo” feelings of guilt, anger, blame
- 34. Calming the conversation for you and your child • When you are feeling overwhelmed with emotion, it is OK to show that, as it shows your child that it is OK to show your feelings and not know the answer. • Ex: “That’s a good question. I don’t know the answer, but I will find out when I talk to the doctor- are there other questions you have that you want me to ask the doctor?” • Please review the HDSA Talking with Kids publication and consult with your presenter or HDSA social worker for additional sample statements Back to Table of Contents
- 35. A Break in the Action….. • Let’s break up into small groups and role-play some of the conversations that might be causing you the most concern or anxiety • One person acts as the child/teen and the other acts as the parent • Then switch • Please discuss what was particularly helpful or difficult in this interactive conversation
- 36. Special Topic: Sibling Relationships • Depending on individual personality, age and developmental stage, each child may have a different reaction to the affected person, the change in the family structure, and their (and their sibling’s) at-risk status • Everyone must learn to accommodate and respect one another, even when everyone doesn’t agree • Please see the HDSA Family Guide series and consult with your local HDSA social worker to discuss additional ways to manage sibling relationships
- 37. Build Your Support Network • Sometimes kids want to talk to their family members, while other times they feel more comfortable talking to someone outside of their family circle • Look to: – Extended family – Your child’s friends – Teachers, coaches, spiritual leaders and other adults you and your child trust – Mental Health Professionals – Meet with these other adults to provide them information and education beforehand- give them Fast Facts from HDSA • Build a team for yourself as a parent/caregiver! • Be a model to your child regarding self-care and the benefits of asking for help/support Back to Table of Contents
- 38. School and Social Life • Child’s life at school (their main venue for social interaction) will likely be affected by family member’s HD • Open Communication – If HD has been explained in a simple and basic manner at home, it will be easier for your child to talk to people outside of the family about HD • Communication with the School – Parents have the choice to inform school personnel and educate them on the illness and effect on the family – School personnel can act as your “eyes and ears” at school- informing you of changes in your child’s behavior and emotional state.
- 39. School and Social Life: Conversation Starters For Young Children (Preschool and Lower Elementary) • “I want you to know that I am going to talk to the school nurse about HD. She may not know much about it. I think it is important that she learn about HD so that she understands what is happening in our family.” For Older Children (Upper Elementary and Middle School) • “I would like to talk to your teacher and guidance counselor about HD. Most people don’t know anything about it. If they understand, they can help you if anything comes up, without making a big deal out of it. Do you want to see the booklet I am going to give them?” For Teens (High School) • “I think it is a good idea for the guidance counselor, or nurse, at school to know about (mom/dad’s) illness. That information may be helpful as they help you with issues that may come up at school for you, or in your own future planning. What do you think?”
- 40. School and Social Life: Your Child’s Friends • Friends can be a big part of your child’s social network as well as their friends’ families • May be beneficial to share some of the same information you gave school personnel with your child’s friends’ parents • These friends and parents can be helpful in preventing or dealing with bullying or hurtful situations and can also be sources of logistical support such as transportation or childcare as needed Back to Table of Contents
- 41. Juvenile HD and the School Environment • School will have much larger and coordinated role to play in the life of a child with JHD • Child should have an Individualized Education Plan (IEP): describes the goals from an interdisciplinary team of school professionals and lists any special supports/accommodations needed to achieve these goals • HDSA created materials to help parents find appropriate resources and provide education to relevant school personnel – JHD Handbook – JHD Resource Guide – JHD and School Publication (includes Q&A for school personnel and a disk with resources for parents, teachers and administrators) – Call HDSA to order: 800-345-4372
- 42. JHD and Sibling Relationships Living with a sibling with JHD can bring the family closer, but can also cause conflict Siblings without JHD may: • Feel sense of jealousy or resentment that sibling who has JHD gets lots of attention or does not have to complete chores • Take on caregiver role • Feel embarrassed by behavior of sibling with JHD • Feel pressure to protect sibling with JHD in the community • Experience guilt of “being spared” Assure children that all of these mixed emotions are normal Back to Table of Contents
- 43. Children and Teens: Role of Caregiver • Positive aspects – Sense of self-worth and gratifying – Feel closer to their family member – Increased empathy for the differences in others • Negative aspects – Potential feelings of sadness, fear, anger, resentment and frustration – Can affect learning and reduce time for education – Feelings of isolation or lack of normalization from peers – High level of responsibility, but little authority
- 44. Children and Teens: Role of Caregiver • Balancing all aspects of life can be difficult: school, friends, dating, career development • Care for Activities of Daily Living- responsibility, potential feelings of guilt, resentment • Reluctance to live their own life and potentially leave family home • Ensure they take time off and socially engage in life aspects like prom, cheerleading, etc. • Please review the HDSA Talking with Kids publication and consult with your presenter or HDSA social worker for additional sample statements
- 45. Safety Reduced impulse control and other psychiatric/behavioral symptoms of HD can pose potential threat to the person with HD and those around them • Discuss situations in which family should seek help and the protocol to do so (who to call, where to go, etc) • Create a “safe room” in the home that locks and has a phone • Remove any weapons (guns, knives) • Beware of any habits that may pose hazard (smoking; sexual promiscuity; driving when supposed to have ceased driving)
- 46. Safety (Continued) • Remember the disease is causing this behavior, not the person • Identify any triggers and avoid them • Create a calm environment with structured routine • Remain calm yourself • Practice de-escalation: soft tone of voice, kind words, give space (including exit), don’t use touch or invade space, leave the scene if needed • Consult with neurologist and/or psychiatrist Back to Table of Contents
- 47. Dating and HD • The decision to tell a significant other about HD in the family may be an emotional one. Teen dating may also bring up the topic of unplanned pregnancy. The at-risk teen that is sexually active should understand how HD is inherited. • Informing a potential date or romantic partner about at-risk status can create much anxiety and increase sense of isolation • An HDSA Social Worker or the HDSA Helpline can help provide more information on this topic and avenues for confidential support. Back to Table of Contents
- 48. Living at Risk • Can be difficult to focus on everyday life (school, friends, etc.) • Encourage support from therapists or others who know what it feels like to live at- risk • Instill hope and consistently help your child to work on staying present in the moment
- 49. Living at Risk • Being aware of some of the range of common concerns expressed by at-risk teens can help you in starting conversations with your child/teen: – The health of the affected parent – The parent’s ability to care for the teen – Whether they will be able to take part in “normal” teen activities – Their ability to leave home for college/career – What it would be like to know their gene status – How they will handle their responsibilities to the family – Being embarrassed in public – Dealing with outbursts and harsh statements from the affected person – The welfare and future of their siblings and who else has the gene – Seeing possible symptoms of HD everywhere – The loss of social life, both the family’s and their own – Worries that no one will love them – Not feeling at ease bringing friends home Back to Table of Contents
- 50. Genetic Testing Conversations • Different than conversations about their loved ones- now the conversation turns to their future • Personal and individual choice, despite what sibling, cousin, parent decides • http://www.huntingtonswa.org.au/resources/Testing-for-HD.pdf • Seek guidance from HDYO, Family Guide Series and your local HDSA Genetic Counselor and/or Social Worker Back to Table of Contents
- 51. Pros/Cons of Obtaining Support via Social Media • Use discretion!!! • Discuss privacy and discretion • It is important that kids feel comfortable sharing with others. – However, sharing on social networking sites or on the Internet can cause the child to lose control over the family’s private information. – We suggest that you have a discussion with your child about appropriate sharing of information. – It is also important to convey to your child that not everything written online is factual and that you are there to help them separate fact from fiction. Back to Table of Contents
- 52. Counseling for Children and Teens • Sometimes children may not feel completely comfortable and able to be open with family, coaches or teachers • Mental health professionals such as counselors, clinical social workers and psychologists can be very helpful for children and teens who are learning about HD and need ongoing support • HDSA Social Workers are also available to provide referrals as well as education and consultation to local psychotherapists so that they become knowledgeable about HD and the role it plays on families and children • Therapy is extremely beneficial, but may feel strange at first for someone. – Always try going to at least two sessions before making a decision of “good fit”
- 53. Closing Thoughts… “While we try to teach our children all about life, Our children teach us what life is all about.” ~Angela Schwindt
- 54. Talking with Kids: Publications One free copy of the following publications is available for families on the HDSA website: • Talking with Kids: A Guide for Families Booklet – This pamphlet provides an introduction to talking about HD with youth, teen and young adults. • Talking with Kids about HD Handbook – This handbook, developed with funding from the American Legion Child Welfare Foundation, will help guide parents and adults through the issues and challenges that come with trying to explain HD to a child or young adult who does not have HD, and who is at-risk of inheriting the disease. The handbook will also provide examples of resources that exist to help parents navigate the path of discussing HD with their children. To order, visit: http://www.hdsa.org/living-with-huntingtons/publications Or contact Anita Mark Paul at amarkpaul@hdsa.org or at 800-345-4372 ext 219
- 55. Feel free to call HDSA with questions or to discuss further! HDSA Helpline: 888-HDSA-506
Notas do Editor
- When children are not given a reason for what they see happening in their family, or an avenue to discuss it, they will create explanations on their own or seek out information elsewhere. They may think that the changes they see in the family are their fault or blame the affected person for behaviors caused by the disease. They may go online and become exposed to information that is neither factual nor applicable for their situation. Giving your child information about HD – the right amount at the right age – will give him or her tools to deal with the changes in the family while helping him or her to feel secure and live positively. Although you may not feel that you know enough about HD to talk about it, you have the child’s trust and that is what qualifies you to be the one to start the conversation. Know that you are not alone in your effort. There are many people ready to offer you support, including the physicians and professionals at HDSA Centers of Excellence, the social worker available through your local HDSA Chapter, members of an HDSA Support Group, or HD knowledgeable mental health professionals. Talking with children about HD should be thought of as a series of conversations over the course of many years. These conversations will develop as the child matures and the affected family member’s symptoms progress. This guide will help you find the right words to start the conversation about HD early and keep the lines of communication open.
- Will discuss age/developmental/maturity level as we go Talking about HD in the family can be difficult and emotional at the beginning. It may be hard to talk to children when your own feelings are not clear. Before you have the initial conversation, there are some things to consider: Give up the idea of a “big talk.” Your goal is to start a conversation and do a lot of listening. Learn as much as you can about HD before you have the talk. The better informed you are, the better you will be able to manage the conversation. Practice the words you plan to say to start the conversation. This is bound to be an emotional talk, so write out your opening statement and practice it. Also, write down the major points you would like to cover. Let your child know that you are there to answer any questions, even if your answer is “I don’t know” or “let me try and find that out for you.”
- • Do not try to cover too much ground at one time. In each conversation there will be a point when you have given your child enough to think about for now. You can add more information next time.
- Setting the time and setting the tone Decide where and when to have the first conversation. Try to choose a time and place where you can limit interruptions and distractions. Tell the child you want to talk with him or her about something important, not that you “have to talk to him or her,” because the child may immediately think that you are angry about something. Plan to turn off your phone (and ask the child to do the same, if applicable). This will be an emotional conversation, so try not to have something planned immediately afterward. You both may need some time for reflection.
- Be honest – You can be gentle with the child and still tell the truth. Let the child know that there is a history of HD in the family. Tell the child what is going on right now with the affected family member(s). Tell him or her how HD explains certain events. Talk about the care the person is now getting. Keep your focus on the here and now. You do not need to go into long-term issues during your first conversation, unless asked.
- Prepare to listen – Listening is the only way to find out what the child is feeling and what information he or she needs right now. Encourage the child to talk. Practice “responsive listening,” or waiting to respond, especially if your child becomes angry or emotional. Listening, instead of reacting to the child’s feelings, will help you remain in control of your own emotions during your talk. Responsive listening can also keep you from giving too many details about things the child is not interested in at this time.
- Be patient – Remember, you came to this conversation prepared. You practiced what you wanted to say and how you would say it. The child was not prepared. He or she will need time to process what has been discussed. Be open to questions – Communicate that you are interested in the child’s thoughts, opinions, and questions. Promise that if you do not know the answer to a question, you will do your best to find out. Tell the child that the conversation will be ongoing and that questions can be asked as they come up. Let the child know that there are no “bad” thoughts, feelings, or questions.
- Keep the door open for further talks – By talking about HD, you have opened a door. You cannot push or pull the child through it. If the child is not ready to share feelings and questions, let the child be and try again later. Try not to judge what has been said, so that the child will feel safe sharing in the future.
- Avoiding Too Much Information Sometimes “the big picture” turns into lots of details about the disease and can be too much for the child to absorb. During your initial conversation, keep the focus on the present and near future. You may want to avoid introducing topics such as the inheritance of the gene, disability, or death, unless your child asks questions about these directly (see Short Answers to the Tough Questions, page 15). The first step is to tell them that a loved one is sick because they have HD. You can increase your child’s knowledge of the disease over time as you continue your conversations.
- Other things you can say: “We can handle this if we can just keep talking to each other.” “We will go at this as a team.” Remember to offer reassurance – Children want to feel safe. Prepare to include reassuring thoughts like these in your initial conversation. “No matter what happens, never forget that there are people who care about you.” “I may not know the answers but together we can try to find them.” “I will do my best to listen to you whenever you want to talk.” “We can handle this if we can just keep talking to each other.” 9
- There is a lot to think about when preparing for your first conversation with a child, or children, about HD in the family. What you say to a particular child should be in your own words, and will depend on the child’s age and maturity, and your personal communication style. Personality Every child has a different outlook on the world. Some kids love to talk, others don’t. Some kids want lots of information and reading material, while others just want to hear that you are taking care of things. Some kids are worriers, while others face the future without fear. Any combination can be found in the same family. Young Children (Preschool & Lower Elementary School) Young children have a shorter attention span, so be sure to keep your explanation short and simple. Use examples that are concrete and familiar. Young children may be better able to express their feelings and ask their questions by drawing or acting out a scene with their toys, so much of your part of the ‘conversation’ will be listening and playing rather than talking. After your conversation, keep an eye on their drawings and games. You may learn a lot about their feelings.
- “There will be changes because of her sickness, but we will always care about each other. That hasn’t changed.” “The doctor is doing his best to help [name] and we can do our best to help her, too.” “Do you have any questions for me right now? If I don’t know the answer, I will try to find out.”
- Older Children (Upper Elementary to Middle School) As children get older, they become more and more capable of participating in conversations, and are able to understand much more about Huntington’s disease. Consider giving your child written material from HDSA and encourage him or her to write down questions.
- “Because of this disease, some things are going to be harder for him. You may notice he is walking differently and his balance is off. He may seem grouchy for no reason you can see. Have you noticed anything like that?” “Now that [name] is sick, I am going to need more help around the house. Will you step up and help me?” “I know all this is hard to understand. What do you think about what I have just said? If there is anything you want to know about HD I will try my best to find the information. Let’s talk some more after school on Friday.”
- Teens Teens are full of contradictions. Many are capable of adult-like conversation, though they may often speak in one-word sentences. They can act like angry toddlers or jump in to assume adult-level responsibilities. Their emotions and responses may rollercoaster from day-to-day.
- “I am going to need you to be extra helpful and not get mad at your mom when things don’t go right, because it is not easy being sick. The most important thing is that we look out for each other. Your mom being sick with Huntington’s disease doesn’t change that.” “What are you thinking right now? It’s okay to be scared, angry, or anything else. I feel sad and a little scared myself. We can get through this if we can just keep talking to each other.” “I am sure you have questions. Is there anything you want to ask me right now? If I don’t know the answer, I will try my best to find out. I know this is a lot to understand, so let’s take some time to let it sink in and we can talk some more in a day or so.”
- Expect the unexpected No matter how carefully you prepare, your children will ask questions for which you are not prepared, or will ask them at a time when you cannot answer. For example, when there are a lot of people around, or you have to focus on driving or another important task, you may find you need more information, or you may need time to get your emotions under control. Remember that your child will take their cues from you. So, be prepared to pause the conversation if you aren’t able to fully participate or if you find yourself getting overwhelmed by your emotions. Be sure to set up a time to come back to the topic.
- There are some questions about HD that no parent looks forward to. Here are some possible answers to the really tough questions. Use these to formulate your own responses.
- Responses that are dismissive or dishonest can cause children to retreat from the conversation. These Conversation stoppers usually arise when parents are too upset or scared to answer a question. Here are some examples: “That’s ridiculous! You know that’s not true.” “How can you feel like that?” Conversation calmers If you ever feel that you are losing control over your emotion
- If you ever feel that you are losing control over your emotions during a conversation with a child, consider using one of these responses:
- 15 minutes?
- Depending on the moment, brothers and sisters in any family may treat each other with love, empathy, anger, protectiveness, support, kindness, competition or any other possible emotion. Children in an HD family experience all the ordinary interactions of siblings, but also face added challenges caused by the presence of the disease. Parents and trusted adults have an enormous role to play in encouraging positive relationships between siblings while helping each child see their unique contributions, cope with his or her feelings and live a positive life in an uncertain world. Depending on their individual personality, age and stage of development, each child may have a different reaction to the affected person, the changes to family structure and stability, and their own (and their sibling’s) at risk status. Some kids “roll with the punches” while others are very sensitive to the changes in home life. Some kids will want to know everything about HD and participate in HD related activities and fundraisers, while others won’t even want to speak of the disease. Because each child has an individual personality and point of view, there may be conflicts that the parent must mediate. Parents will sometimes feel frustrated having to act as negotiators, even as they themselves are feeling the strain of fatigue, keeping up with multiple roles, managing finances, etc. Below are some suggestions to help everyone manage during difficult family times. There are ways in which you can help siblings learn to respect and accommodate each other, even when they don’t agree. Beyond giving each child simple, age appropriate information about the disease, there are ways to improve communication and reduce stress among siblings: Keep all the children informed when things change, using age appropriate language. Do things as a family. Create some good memories . Listen to what siblings say to each other to better understand what they think is happening. Schedule special time with each child. Recognize each child’s unique qualities and family contribution. Offer age appropriate ways for kids to express themselves. For example, for a young child, drawing a picture about themselves or their family- and then explaining the picture could give them a comfortable way to show what they are feeling. Reassure your children that they are not solely responsible for protecting a younger sibling, or a sibling with JHD at school , in the neighborhood, or at home Get the family involved in an HD-related organization to help the children feel that they are not alone and that they can do something to combat the disease. Recognize that you are your children’s role model for dealing with conflict. Call on counseling and mental health professionals if needed to deal with sibling issues. I might add a sentence or two that acknowledges that parents themselves may feel the strain of fatigue, keeping up with multiple roles, managing the finances, so what we are suggesting is meant not to add to their burdens, but to help everyone manage during difficult family times. (or something like that). For a family under stress, this just may be more than a parent can manage- could we offer some examples that don’t require money? Or a lot of time? Maybe make your own pizza night? Goofy ice cream sundaes? Or each child select a movie that everyone agrees to watch no matter how much they may not want to see it again? JANE: I agree—maybe a box on doing things as a family and some examples? This isn’t quite it, but we had situations where an older child tried to protect the younger children from conflict in the home.
- As a trusted adult, you will remain the child’s main source of information and emotional support, but because the presence of HD in the family will elicit many strong and complicated feelings, you may find that the child needs to talk with someone outside the family circle. Here are some ideas and guidelines to help you develop a support network for your child. Your extended family The extended family of the affected individual can be a very important source of support as they are likely to understand family dynamics surrounding HD and may have a personal understanding of what the child is experiencing. You may find that some family members are uncomfortable speaking openly about HD in the family. Some may feel that HD is something to hide. This often arises from that person’s fear about the future, as well as fear of potential discrimination. Generally, the more straightforward and honest you are with the children about family dynamics surrounding HD, the more they will feel they can trust you and come to you with their concerns. Your child’s friends A child’s friends can be a big part of his or her team of support. At the start, many children want to tell only their closest friends about HD in the family. What they tell their friends will depend a great deal on what you have told them and what is being discussed in the home. If communication at home is open and positive, then it will be easier for the child to share information about HD in their family with friends and other kids. If HD has been explained in a simple and basic manner, the child will be able to keep it straightforward as well. Teachers, coaches, spiritual leaders, and adult friends Your child may feel more comfortable talking to someone they already know. A favorite teacher, sports coach, or other trusted adult may offer a steadying influence and help the child to know that many areas of their life will remain the same. The school counselor may also be a willing listener when the child needs to talk. A child may also want to talk privately to the family’s spiritual advisor. Many children (and adults) find spiritual counseling to be very helpful and supportive. If you can, meet with the teacher, coach, etc. before the child does and offer them some information on Huntington’s disease. Most people are still unfamiliar with HD and many of those who think they are familiar with the disease may only be aware of the motor disorders, such as chorea. Fast Facts About HD, available for download in English and Spanish on the HDSA website, gives solid background information about the disease. Talking to the adults in the child’s support system will also allow you to enlist them as your “eyes and ears.” They can alert you to changes in the child’s behavior (poor performance, inattention, social isolation, aggression, etc.) that may be linked to the child’s emotional state. Choose the people you tell for their sensitivity and discretion. Children of any age dislike being singled out.
- A diagnosis of HD in the family will affect the child’s experience of school, as much as one might wish it were not so. School is often a child’s primary source of social interaction. Most of a child’s day is spent at school or doing school-based activities, including school work, intramural sports, and after-school activities. There are ways that you can help your child navigate the ups and downs of living with HD in the family and still be fully engaged in school work and able to sustain relationships with friends and other kids at school . Open communication Part of educating your children about HD is helping them learn how to talk about HD with people outside of the family. If communication at home is as open and positive as possible, then it will be easier for the child to share information about HD in their family at school and with their friends because this way of talking about HD has been learned at home. If HD has been explained in a simple and basic manner, the child will be able to keep it straightforward as well. Communication with the school An element of open communication is letting the right people at the school know about the diagnosis of HD in the family, providing them with the right amount of information, at the right time. You are the only one who can decide how much to share and when. Some parents believe that if there are presently no issues, then no one at the school need know. Other parents want to start by sharing the information with one individual, or a group of people, that the child is close to. The changes at home caused by HD may affect your child’s ability to do his or her schoolwork. Their feelings about the diagnosis may cause them to withdraw or they may start acting out. By letting someone at the school know what is going on in your child’s home life that is stressful or makes it harder for your child to concentrate, you can create a more sympathetic atmosphere. The people who know about these stressors can also provide you with important insights about how well your child is coping. Talking to the adults in the child’s support system will allow you to enlist them as your “eyes and ears.” They can alert you to changes in the child’s behavior (poor performance, inattention, social isolation, aggression, etc.) that may be linked to the child’s emotional state. Some people you may consider going to first are the principal, the child’s teacher, school nurse, coach, or school counselor. You can choose to talk to these important people individually or as a group. Choose the people you tell for their sensitivity and discretion. Children of any age dislike being singled out. It may be wise to let the child know that you are going to share information with the school. Sit down with them during a quiet time and let them know who you are going to speak with. Tell them in a loving, low key way. Just state the fact that you are going to inform the people at school so that they will understand and be supportive.
- A child’s friends can be a big part of his or her team of support. The simple, age-appropriate information that you provide your child will help them explain HD to their friends in their own words. Friends are very important to children and youth. Much of the same information that you share with school personnel may be appropriate to share with parents of your child’s close friends. In some families, children who are not close to your child may say hurtful things about the affected parent, and the parents of your child’s friends may witness or hear of these statements. These parents can be of help to you in preventing or dealing with hurtful situations, if or when they happen. Parents of your child’s close friends may also be sources of support for your child, such as pitching in to provide transportation to a school event when you can’t be away from home. This may be obvious and not needed. I was trying to find an example of support that can come from trusted adults besides one’s parents- which is true for many kids. Actually I like it. If friends’ parents are aware of the circumstances at home they may be more willing to offer rides, etc., and not expect as much reciprocity. This could be very helpful.
- In the case of a child with Juvenile-onset HD (JHD) the school will have a much larger and more coordinated role to play. Your child will most likely have an Individualized Education Program (IEP) and you will be quite involved on your child’s behalf. HDSA has prepared materials to help parents of kids with JHD to find appropriate resources and provide education to relevant professionals. These resources include a JHD Handbook, a JHD resource Guide, as well as the JHD and the School Experience publication, which includes a print publication containing questions and answers for school staff, administrators, teachers, students, and parents as well as a disk with additional resources for parents, teachers and administrators. For more information, or to order these publications, please call HDSA at 800-345-4372 . Bullying in the School Bullying is defined as “unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance. The behavior is repeated, or has the potential to be repeated, over time. Both kids who are bullied and who bully others may have serious, lasting problems. “ Bullying is behavior that can have terrible consequences. Children and teens with JHD are at high risk for bullying. Not only are they affected by movement disorder, but they are experiencing cognitive and behavioral changes caused by the disease. Teasing and bullying can worsen symptoms of JHD, such as distraction, impulse control and sensory overload. There is also a risk that the child or teen may be bullied into engaging in socially inappropriate, aggressive or even dangerous behavior. Bullying does not only occur in person or at school. Much of today's bullying happens by text, online, or on the school bus. Bullying can be verbal, social or physical and all of them can cause your child pain. While many schools are working on addressing the issues of bullying, parents must remain alert to thoughtless and cruel behavior on the part of other students and be prepared to ask the school to intervene. Parents may want their child to be resilient and know how to ignore bullies, but they must also be alert to signs that the bullying is affecting the child’s well being and sense of self worth. Let. your child know that they can talk to you openly and without judgment about problems at school, on the bus or online. You can learn more about bullying, what signs to look for, and what can be done to stop it at www.stopbullying.gov, with a helpline 1-800-273-8255(TALK). THE FOLLOWING ARE IN OUR MANDATE. ARE THEY COVERED WELL ENOUGH IN THE JHD AND THE SCHOOL ENVIRONMENT PACKAGE? Explaining HD to their school officials and teachers Bullying of children with HD by their peers PERHAPS THERE COULD BE A PARAGRAPH ON TALKING TO KIDS (NOT YOUR OWN) ABOUT BULLYING. We can put all of this in the section about siblings.
- JHD and Siblings at home Living with a sibling who has JHD can bring a family closer, but it can also cause conflict. Children may see their brother or sister struggling with the disease and may feel guilty because they are healthy. They might also feel a guilty twinge of jealousy at the attention that the parents are giving to that sibling. Kids can feel resentful that the disabled sibling is not asked to perform the same chores that they are responsible for, even when they know that it is difficult of impossible for their sibling to do the task. It can be hard for parents to be understanding of these feelings. It can be hard for the sibling to understand them, too. Conversation starters for talking with siblings of a child with JHD Young Children (Preschool & Lower Elementary School) “Sometimes it seems like you really love your brother/sister, and sometimes it seems like you don’t like him/her. Tell me more about that.” Older Children (Upper Elementary to Middle School) “I get the idea you don’t think we treat you and your brother/sister the same. Help me understand how you feel about that.” Teens “Your brother/sister sure needs a lot of attention. Tell me what you need me to do to make sure that I am paying attention to what you need, too.” This section should precede the safety section because this sets up the dynamic of being a sibling of a person with JHD and all the consequent feelings that accompany it. Then put the safety section below it because it will apply to fewer families (or more families as the disease progresses). I think the safety section will appear less abrupt if it goes after this section. Maybe start with a more magnanimous thought then move to this.
- Teens report both positive and negative feelings about being caregivers. Positive aspects of caregiving included strengthened relationships with the healthy parent and siblings, less tolerance for peers’ insensitive behaviors and increased sympathy for older adults, as well as feeing closer to the sick person. Some said they found caregiving hard but gratifying. Others derived self worth when their contributions to stability in the family are recognized and supported. That said, there are many ways that caregiving affects teens negatively. Caregiving youth may have feelings of sadness, fear, anger, resentment and frustration. Caregiving can affect learning and reduce time for study. They may get into trouble with teachers, be unable to do homework, miss school or be chronically late for school. Teens can feel isolated from their peers and overwhelmed. The difficult and emotional aspects of looking after a person with HD are well known to adult caregivers. But teens are not adults. They may have a powerful sense of responsibility, but they have no administrative or legal authority over the care of the person with HD. They may coordinate the daily care, but be left out of family decisions about that care. Other members of the family may take the contributions of the teen for granted. If there is not a well parent on the scene, the teen may be left to coordinate care alone, without training as to how to ask for help from healthcare providers or social services. Lack of authority, high responsibility and high personal uncertainty make teen caregiving a very demanding responsibility.
- Your teen may help you with caregiving. Many teens in HD families do. Caregiving teens can find themselves making day to day decisions about the care of the person with HD and taking on an adult caregiving role, often without supervision or support. Their assistance may make it possible for the affected person to keep living at home and for the healthy parent to keep working. Caregiving for a person with HD can be very stressful, and teens who provide caregiving need support and understanding. Some of the responsibilities that teens take on include: Helping the person with HD with activities of daily life, such as eating, dressing and bathing. Acting as a peacemaker, to minimize outbursts and undesirable behavior in the person with HD. Finding their own solutions to behavioral problems and psychiatric symptoms in the person with HD. In some families, there is more than one person with HD. Teens in an HD family may have a parent or adult relative with HD and a sibling with JHD. They may do a lot of caregiving for the sibling at home and act as a protector at school. However, the responsibilities of providing care for a parent with HD are heavier than caring for a sibling, because the teen is taking over the parental role. In addition, these teens are at risk for HD, which means that they know they may develop the disease in the future. This can color all aspects of their lives, influencing their decisions about their future, as well as their activities in the present. Although some teens may be eager to escape the family and the responsibilities, others are reluctant to leave once they have finished high school because of concerns regarding who would be in charge. You may rely heavily on your teen for help with caregiving. By talking about the teen’s contributions to the care of the affected person, and by asking for his or her observations and opinions about care, you will show respect for the teen’s efforts. You may also hear some valuable insights about the affected person. To learn if your teen is feeling a great deal of stress and not expressing it, gently ask them about it. It could take several casual conversations to get them to share their feelings, as they may not want add to your burden. Conversation starters about teen caregiving “I know you missed going to the game because you had to stay home and watch your dad and I want to thank you for that. Do you need some time off? I could ask (friend or relative) to take over for a few hours tomorrow so you can see your friends. What do you think?” “I’ve been asking a lot of you lately. How are you feeling? Are you able to keep up with your schoolwork? Is there anything I can do to share some of the burden with you?” “I’m sorry that (Affected Person) was so hard on you today. It must be frustrating to do so much for someone who doesn’t seem to appreciate it. Do you want to talk about it?” “I know that people in our family don’t all agree on how to take care of your dad . You have good ideas and I agree with you when you tell dad, he can’t have another cigarette (or beer). You are very patient with him and I really appreciate that, and I know he would agree with me. If you are upset by family arguments, please let me know, and I’ll do the best I can to deal with his relatives.” (box) Time to “just be a teen” Teens can be very effective caregivers, performing physical and decision making tasks at the level of an adult. But they aren’t adults and they need time to “just be a teen.” Teens are at a developmental stage where they are learning to make decisions about their own behavior; for example, choosing whom to spend time with, whom to date, and what course of study or training they want to pursue. The time that teens spend with their friends or on sports teams or in after- school activities is not wasted time. Teens may look like they are “goofing off”, but they are actually learning important social and decision making skills and are developing a sense of themselves as individuals. Finding a way for your teen to “take time off” and remain socially connected can help relieve the stress of caregiving.
- Young adults at risk for HD carry that knowledge with them everywhere, including their social life. When they are attracted to someone and when they date, there is always an anxiety that they will be rejected because of their gene status. If they are dating, they are faced with the dilemma of when it is the right time to talk to about the disease? How do they begin the conversation and what is the right thing to say? There are many different opinions and approaches about what to tell and when to tell it. Some young adults feel that, even in casual or initial dating, it is dishonest not to reveal the presence of HD in the family. Others want to postpone the discussion indefinitely. As a trusted adult, you can ask your adult child about their feelings and support them in their decision making process. You may be able to introduce ideas he or she may not have considered. Considerations may include : The risk of bringing up such a serious discussion too soon in a relationship. Is the person trustworthy and discreet? Is there an intimate relationship developing where pregnancy is a possibility? Are you afraid the person will reject you ? Your young adult is not alone in facing this difficult decision. Others in the HD community have insights to share. If possible, her or she should talk to other young people who have been through He or she may want to talk about this experience, perhaps in an HD support group. The decision can also be discussed in a supportive setting with a counselor, spiritual leader or other trusted person. Caution should be exercised before talking about gene status on social networking sites or anywhere on the Internet, as it is easy to lose control over private, personal information. Dating and sexuality When a teen begins to date, it can be an emotional time for the parent. Their child is growing up and forming attachments outside the family. It can also bring up issues around telling people about HD in the family. Your teen may need support from you to be feel comfortable not saying anything about HD with casual friends and also feeling confident when the time is right to tell their HD story to someone they feel more serious about. You may not be able to reassure your teen that the love interest will accept the family, but you can lend a sympathetic ear and listen carefully and respectfully to what they say. Teen dating may also bring up the topic of pre-marital sex. Probably one of the thorniest issues faced by parents of at-risk teens is talking about sexuality. Teen dating and sex is a hot topic in any family, but it has added weight when HD is present, because unless there has been a diagnosis of JHD, your teen probably does not know his or her gene status. If the teen were to father a child or become pregnant, that baby might be born with the gene that causes HD. The teenage years can be a time of risk-taking and your child may not be thinking seriously about the consequences of their behavior. Even teens with a strong religious background can make poor choices when it comes to sexual behavior. While it can be difficult to accept that your child may be involved in a sexual relationship, it is important to let them know about the possible consequences for a person at risk for HD. Open communication and factual information can help your teen make good choices. Conversation starters about sex and dating “At some point in your life you will want to (or perhaps are) have sex with your boyfriend (girlfriend). There are some important decisions for you to consider in the midst of this important time in your life. One of these things is to decide about protecting yourself (partner) against pregnancy until you are ready to become a parent; what do you think about becoming a parent someday?” “An equally important topic is what do you want to tell him/her about your risk to develop HD; are there things you would like to say? Or keep to yourself?” "Having a child should be a serious decision. I want to be sure that you and NAME are taking precautions. With HD in the family, this is something you really must think about." "Many at risk people choose to be tested for the HD gene before having a baby, or even before getting into a serious relationship. What do you think about that?" Should we be careful here? There are some people at risk who choose either to not get tested and have children or to get tested and have children even if positive. I wonder if we should we avoid being prescriptive, at the risk of sounding judgmental. Conversation Starters about Dating “You and (girlfriend/boyfriend) seem to be getting serious. Have you talked to (her/him) about HD? Is this something where you’d like some help?” “I heard that your friend is getting married. I hope you don’t think you can’t get married because you’re at risk for HD. What do you think about getting married? Would you like to talk to the social worker or genetic counselor about it?” Meeting the family A time may come when your grown child will want to introduce their boyfriend/girlfriend to the extended family. He or she may be concerned an affected relative may behave inappropriately or that the physical symptoms of HD will be shocking to a person not familiar with the disease. If possible, talk with your adult child about their hopes and fears around the event. Find materials and information for their loved on to read before the family gathering. Fast Facts About HD is a brief overview of HD that can be downloaded from the HDSA website, www.hdsa.org. Would we suggest going to HDSA sanctioned social networking sites to learn how others handled this decision? And learn how others handled the consequences (good or bad) of telling? I seems this is a huge risk when you really just want the other person to not leave you. This may be a repeat of bullet #1, but is more direct.
- Being at risk for HD can affect your teen’s ability to focus on school, choose a college major or career, and even enjoy relationships with others theirs age. By keeping the conversation going with your teen, you can help them manage the worries that are part of being at risk and live a positive life. You can provide compassionate support through open communication about HD and by letting your teen share their concerns without judgment. Support groups, online forums and in person counseling can also provide safe havens for your teen to express their worries and frustration and offset any sense of isolation. Talking about problems with someone who understands the challenges of HD can be a big relief to a young person. A list of resources is available on page XX. Some at risk teens find it hard to make decisions about a college major or career track, worrying that there isn’t enough time to do what they want, because they may get sick some day. No one can say when symptoms of HD will arise (or in the case of an at –risk teen, IF they will ever have the disease.) Encourage your teen to choose a field of study and pursue it to their best ability. The school guidance counselor can be a valuable ally in helping with this process. Some of the issues that worry at-risk teens are the same as yours and some are different. Being aware of the range of concerns that have been expressed by other at-risk teens may help you in starting conversations with your child.
- Living positively while at risk for HD Hope is essential to a positive life. Help your teen stay hopeful for the future and see the potential in every day. Remind him or her that people with the HD gene mutation? can (and have) accomplished great things in their lives. Keep informed about the research being done to find treatments and a cure for HD. Ways for at-risk teens to stay positive: Staying proactive and making plans for college/career. Being involved in school and community activities. Spending time with friends. Staying physically active. Participating in HDSA’s National Youth Alliance Joining a local chapter of HDSA. Attending a regular support group or counseling session. Volunteering with fundraising for HD research. Advocating for the rights of people with HD through HDSA. Participating in Clinical Research or Observational Studies. Asking for and accepting help when things get difficult. Contributing to household tasks for the family
- Deciding whether to have the test is one of the hardest decisions young people face and there’s no simple way to make that choice, because knowing one’s gene status “changes everything and changes nothing.” Once you know your gene status, it fundamentally changes your outlook and worldview. Gene status is a fact, but life is still there to be lived. As a parent, you may have your own feelings about the predictive test for HD. You may not support the idea of having the test performed because currently there is no cure. Moreover, if the test comes back positive, it cannot tell the young person when they will develop HD. You may worry that it will affect the young person’s ability to get a job or life insurance or health insurance or a loan. In some cases, knowing the gene status of the child will confirm the gene status of a parent who has not been tested and who may not want to know that information. These are all valid concerns for you to have and to express. Some teens feel that the parent without the HD gene cannot truly understand what it means to be at risk. Ultimately, the decision will be the young person’s to make. While the current guidelines for the predictive test for HD specify 18 years as the minimum age for testing, at- risk teens have said they want opportunities to talk about the test, even though they would not be able to make a final decision for years (will cite the study). Ask your teen privately what he or she thinks about gene testing. If they seem to be interested in learning more about the process, you can offer to schedule a meeting with a genetic counselor or HD social worker who can talk to them about the test. The genetic counselor is a neutral party, outside the family circle, who can help the teen begin to think about what they might do when they reach the age when a test can be performed. It is common for some members of a family to choose testing while others decide not to test. Let your teen know that they don’t need to make the same choice as other family members. Currently, it is estimated that less than 10% of people at risk ultimately choose to be tested. Having a conversation with your teen will help you discover what they think about the test. When a young person reaches the age of 18, he or she can choose to have the genetic test for HD performed. By that time, most teens in HD families are aware that they test is available and many have given it considerable thought. HDSA has a Family Guide to Genetic Testing that is available for download at www.hdsa.org. This pamphlet contains background on the testing process, Q&A’s about the decision to test, guidance for choosing a testing center, as well as other important information. If your adult child is considering being tested, encourage them to call the HDSA helpline or speak to an HDSA social worker to learn about the HDSA-recommended protocol for genetic testing, which was developed by a consortium of healthcare professionals.. That way you are assured that he or she will meet with a genetic counselor before any decision to test is made and, if the test is performed, that your loved one will be counseled when the results are returned. You can call the HDSA helpline at 888-HDSA-506. You can find a list of testing centers that follow the genetic testing protocol at www.hdsa.org, in the Living with HD section.
- The conversation about HD will be an ongoing process over many years. You may choose to talk to your children as needed or use the annual pediatrician “check-up” as a reminder to “check-in” on the subject. There will be many small conversations and a few major conversations: when your child is studying biology in school; when your child takes a major step towards independence such as beginning college or enlisting in the military; when your child begins dating or speaking of future plans for a family; or when the affected family member shows a decline or need for increased care. HDSA is here to help you begin and sustain your conversation. To connect to HDSA resources, please call HDSA at 800-345-HDSA(4372).
- Will be ready in june. One free copy per family.