(child's name) and prader-willi syndrome
DESCRIPTION
(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: - PowerPoint PPT PresentationTRANSCRIPT
![Page 1: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/1.jpg)
![Page 2: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/2.jpg)
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)
2
(Insert photo of child)
![Page 3: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/3.jpg)
(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)
3
(Insert photo of pet)
![Page 4: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/4.jpg)
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
4
![Page 5: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/5.jpg)
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”?5
![Page 6: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/6.jpg)
(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
6
![Page 7: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/7.jpg)
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
7
(Insert photo of child with a sibling or friend)
![Page 8: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/8.jpg)
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)
8
(Replace photo with your child participating in an
activity)
![Page 9: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/9.jpg)
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
9
(Replace with your example as needed)
![Page 10: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/10.jpg)
(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
10
![Page 11: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/11.jpg)
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
11
![Page 12: (Child's Name) and Prader-Willi Syndrome](https://reader035.vdocuments.net/reader035/viewer/2022062314/56813aee550346895da35e14/html5/thumbnails/12.jpg)
Thank you! What
questions do you have?
12
Insert photo of child with a wave goodbye)