PWS question: When and how did you tell Ayden Jane that she has Prader Willi Syndrome? What did you tell her?
First of all, we wanted Ayden Jane to know how awesome she is and have a strong confidence in God and her own unique gifts. We want(ed) PWS to be that extra thing she deals with, but not who she is. (some days I'm pretty sure we over did the whole confidence thing but...)
We used the words Prader Wili Syndrome in our home as we talked about research and doctors and fund raising.... I sort of thought AJ would put two and two together at some point.
With Ayden Jane we used age appropriate phrases like 'your body doesn't work well with sugar' and 'we see Mrs. Jen to make sure you grow strong and straight'. She was learning about how Prader Willi Syndrome effected her, just without the label.
I'd say it was within the past year that there were enough questions about why she has a shot every night, why does she have PT, OT and horses, why doesn't her body work well with sugar, why does she have to take supplements, why didn't she talk with her mouth and only talked with her hands when she was little, why ....
At some point she asked directly why her body does things differently so I simply answered, "Prader Willi Syndrome makes your body that way." She practiced saying it but didn't really want a lot more info at that moment. Over r the following weeks she would randomly ask things like, "do I get my shot because I have PWS?"
Eventually on one of our long dog walks. Otherwise known as uninterrupted talking time, Ayden Jane really delved into it all and her understanding was astounding. She had taken in all the little snippets from conversations and pieced them together.
I can honestly say, Ayden Jane knows she has PWS, but she does not fear it. She just accepts that it is a part of who she is and how she was made. She is a bit curious why God made her with PWS but is thankful for all the things and people who help her achieve so much. She knows she has PWS but is absolutely positive that it offers no challenge that she cannot handle.
So, short answer? We told her when she asked at around 5-6 years old. We told her a little at a time, as she wanted to know. We told her the truth. No big deal, just that PWS is the name for why you eat the way you do, why you have a shot every night...
First of all, we wanted Ayden Jane to know how awesome she is and have a strong confidence in God and her own unique gifts. We want(ed) PWS to be that extra thing she deals with, but not who she is. (some days I'm pretty sure we over did the whole confidence thing but...)
We used the words Prader Wili Syndrome in our home as we talked about research and doctors and fund raising.... I sort of thought AJ would put two and two together at some point.
With Ayden Jane we used age appropriate phrases like 'your body doesn't work well with sugar' and 'we see Mrs. Jen to make sure you grow strong and straight'. She was learning about how Prader Willi Syndrome effected her, just without the label.
I'd say it was within the past year that there were enough questions about why she has a shot every night, why does she have PT, OT and horses, why doesn't her body work well with sugar, why does she have to take supplements, why didn't she talk with her mouth and only talked with her hands when she was little, why ....
At some point she asked directly why her body does things differently so I simply answered, "Prader Willi Syndrome makes your body that way." She practiced saying it but didn't really want a lot more info at that moment. Over r the following weeks she would randomly ask things like, "do I get my shot because I have PWS?"
Eventually on one of our long dog walks. Otherwise known as uninterrupted talking time, Ayden Jane really delved into it all and her understanding was astounding. She had taken in all the little snippets from conversations and pieced them together.
I can honestly say, Ayden Jane knows she has PWS, but she does not fear it. She just accepts that it is a part of who she is and how she was made. She is a bit curious why God made her with PWS but is thankful for all the things and people who help her achieve so much. She knows she has PWS but is absolutely positive that it offers no challenge that she cannot handle.
So, short answer? We told her when she asked at around 5-6 years old. We told her a little at a time, as she wanted to know. We told her the truth. No big deal, just that PWS is the name for why you eat the way you do, why you have a shot every night...
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