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(Child's Name) and Prader-Willi Syndrome

(Child's Name) and Prader-Willi Syndrome. We are (Parent’s names) (Child’s name) is our (son or daughter) and is one of your classmates this year We are here today to help you better understand (Child’s name). (Insert photo of child). (Child’s name) is just like you in many ways:

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(Child's Name) and Prader-Willi Syndrome

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  1. (Child's Name) and Prader-Willi Syndrome

  2. We are (Parent’s names) • (Child’s name) is our (son or daughter) and is one of your classmates this year • We are here today to help you better understand (Child’s name) (Insert photo of child)

  3. (Child’s name) is just like you in many ways: • She went to (school’s name) Elementary and probably knows a lot of you • She has a (brother or sister - name), whom some of you probably know from (school’s name) • She has a dog named “(pet’s name)” that she loves to play with • She likes lots of activities outside of school like (list activities) (Insert photo of pet)

  4. But (Child’s name) has some unique challenges – (He or She)was born with a condition called Prader-Willi Syndrome (PWS) • PWS is rare (1 in 15,000 people) • PWS occurs randomly before birth – nobody else in our family has it • PWS will be part of (Child’s name) (his or her)whole life (it doesn’t go away like the flu) • PWS can’t be cured– there is no medicine for it • It’s not contagious– no one can catch it like a cold • PWS effects people all over the world

  5. Because of PWS, (Child’s name) feels hungry all the time • (His or Her) brain doesn’t know when (his or her) stomach is full (even after (he or she) has eaten) • Imagine a time when you were really hungry – that is how (Child’s name) feels all the time! • When you were really hungry; • Were you distracted by thoughts of food? • Were you anxious about when you would get food? • Were you “cranky”?

  6. (Child’s name) doesn’t know when to stop eating • If we left it up to (he or she) would eat too much, which would be unhealthy • We have to control (Child’s name)’s food, and we have to make sure (Child’s name) can’t get access to food • We could use your help to make sure (Child’s name) doesn’t get food (he or she) shouldn’t have -- please don’t give (him or her) food or let (him or her) take food without a teacher’s permission

  7. It is hard for (Child’s name) to start and maintain friendships • (He or She) really wants to be your friend but can’t always figure out how to join in or have a conversation with you • When you are with (Child’s name) you may not think (his or her) reactions are (Child’s name) often has trouble reading body language and facial expressions • It’s often easier for (him or her) to follow along in smaller groups • We hope you will make an effort to include (him or her) – it is really important for everyone to have friends (Insert photo of child with a sibling or friend)

  8. Because of PWS, (Child’s name) has to work harder to run and jump and play as fast as you do • No one knows why • Despite the extra challenge, (Child’s name) (describe activities, i.e. rides horses, swims, rock climbs, jumps on our trampoline, etc.) • Please support (Child’s name) when (he or she) participates in physical activities since it is harder for (him or her) (Replace photo with your child participating in an activity)

  9. You may notice that (Child’s name) wears a lot of band-aids • Because of PWS, (he or she) can’t stop (himself or herself) from picking at bug bites and her cuticles • When (he or she) picks, sometimes (he or she) has small cuts that bleed a little – this is not harmful to (him or her) or to you • We have (him or her) wear band-aids to stop the picking and to help with healing (Replace with your example as needed)

  10. (Child’s name) gets some extra teacher support at school • (Child’s name) will get help from Mrs. D, who will usually be in the classroom and around school with (him or her) • Mrs. D helps (Child’s name) stay organized and helps (him or her) with any extra questions (Child’s name) may have about schoolwork

  11. Those of you who been in class with (Child’s name) have probably seen (him or her) overreact to some situations • This is a typical part of PWS and not something you need to worry about • It is more likely to happen when (Child’s name ) is hungry, tired, confused, or insulted • The best thing for you and the teachers to do is just give (him or her) a little time and space • You’ll find (he or she) quickly recovers

  12. Thank you! • What questions do you have? Insert photo of child with a wave goodbye)

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