It’s getting close to conference time! So, I’ll be posting a few things about what you might expect at this year’s HPS Family Conference.
This year (we have done this in the past too) we will have a separate session for adult HPS’ers, for parents of HPS’ers and then if there is a large enough group, one for spouses, partners, friends, cousins or anyone else who serves in the role of supporting someone with HPS.
I mention this so you’ve got a chance to think about any issues you’d like to bring up during this unique opportunity to talk face-to-face with others walking in your shoes. This session will be after the big circle on Saturday, before lunch.
We all have our “issues” surrounding HPS and they are different depending on what role we play in the HPS community and where our HPS loved one is at with the disorder. For parents of younger children, issues might surround first aid, IEPs and building independence among little ones with low vision.
For adults with HPS, there are sometimes issues that they might feel awkward bringing up in front of family or friends. So often we don’t want people to worry about us, and we don’t talk about things like dating with HPS, or communicating our limits to our loved ones, or how we really feel about our lung disease. The list goes on and on.
And I’m sure that spouses, boyfriends, girlfriends, friend friends and extended family have questions and needs of their own, and in the past we really haven’t addressed those needs. It’s a chance for them to ask questions and bring up anything we could be doing better to serve them.
So, give it a little thought and bring your observations and questions to share with others.
This year (we have done this in the past too) we will have a separate session for adult HPS’ers, for parents of HPS’ers and then if there is a large enough group, one for spouses, partners, friends, cousins or anyone else who serves in the role of supporting someone with HPS.
I mention this so you’ve got a chance to think about any issues you’d like to bring up during this unique opportunity to talk face-to-face with others walking in your shoes. This session will be after the big circle on Saturday, before lunch.
We all have our “issues” surrounding HPS and they are different depending on what role we play in the HPS community and where our HPS loved one is at with the disorder. For parents of younger children, issues might surround first aid, IEPs and building independence among little ones with low vision.
For adults with HPS, there are sometimes issues that they might feel awkward bringing up in front of family or friends. So often we don’t want people to worry about us, and we don’t talk about things like dating with HPS, or communicating our limits to our loved ones, or how we really feel about our lung disease. The list goes on and on.
And I’m sure that spouses, boyfriends, girlfriends, friend friends and extended family have questions and needs of their own, and in the past we really haven’t addressed those needs. It’s a chance for them to ask questions and bring up anything we could be doing better to serve them.
So, give it a little thought and bring your observations and questions to share with others.
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