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#22247 - 02/15/07 11:28 AM A question about dealing with public places
JAY Offline
Member

Registered: 02/15/07
Posts: 7
Loc: RANCHO CUCAMONGA CA
I am new to this group and excited, I think this is an awesome way to help each other with our challenges facing loved ones with Ichthyosis, My grandson Breyden is 1 year old and I am struggling with the looks and the stares from people when he is in public places. Many times there are those who smile and treat my grandson very tender and loving but there are those who arent, ask rude questions and stare sometimes with disgust. I have tried so very hard to ignore and think positive thoughts about my little guy but cant help from getting angry and hurt.I guess its my wanting to protect him because I love him so much, I have accepted him and I dont even see all the little differences any more, My daughter handles this situation much better than me.Any feedback would be appreciated
Janet

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Jay
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Jay

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#22248 - 02/16/07 03:21 AM Re: A question about dealing with public places
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Jay, I know it must be very hard and awkward for you when people stare like that...I have ichthyosis myself, and my mother used to get angry when people stared and got up and moved seats when we were at the dermatology clinic at the children's hospital of all places...

I kind of took it in my stride, but after a while i kind of fed off my mothers anger...so try and stay calm about it, try and be honest about it to them...

People often look out of ignorance of course, and they have never seen it before, so my philosophy is to understand from their perspective, and i don't get angry, but explain that it is just a skin condition, and it is not contagious...i feel that this puts them more at ease, removes the fear factor...and then you can get on with your day, knowing that they are not freaking out about it...and have been educated at the same time...

Everyone here will have heaps of ideas for you i am sure, one of the most popular ones have been to have little cards to hand out to people...

I just personally feel that there is nothing wrong with face to face honesty, in a very unthreatening manner, which corrects people's misconceptions, in a compassionate personal way...Of course there is no place for outright rudeness from anyone, and that will get you going...

to me...(my personal opinion only) cards give a real business like manner, which almost borders on snobbery, and makes us look like we are superior to everyone else, and that is not going to help us in the long run, we want to be accepted as equal beings, not under or over everyone else...

Heaps of people will help you out here, and embrace all views, after all it is all about trial and error...and what works for you personally...

Love Pauline, and welcome, there are some great mums here to support you...

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#22249 - 02/16/07 11:46 PM Re: A question about dealing with public places
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Jay
First of all, welcome to our ichthyosis family and I am happy you found us.There are times you are going to deal with people who are insensitive and rude, and just dont have a clue.Some of the mothers in our foundation have cards that explain their childs skin disease, and give them to those who are staring and inquisitive.Check in with Jean Pickford or Maureen Tierney at the foundation at info@scalyskin.org. for information about cards. In the moms section, there are numerous posts on how they deal with the stares.I am affected with x-linked ichthyosis, so I give the stare right back in a non-confrontational look.What type of ichthyosis does your grandson have? Does your daughter know about FIRST, our website at www.scalyskin.org, and our Ichthyosis Support Network. Possibly we have families down south in your area that you can meet.Take care Jay and I hope to see more of your posts.By for now.
Sincerely,
Central Cal Les
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Les Avakian

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#22250 - 03/09/07 07:10 AM Re: A question about dealing with public places
JAY Offline
Member

Registered: 02/15/07
Posts: 7
Loc: RANCHO CUCAMONGA CA
Quote:
Originally posted by Les Avakian:
Hello Jay
First of all, welcome to our ichthyosis family and I am happy you found us.There are times you are going to deal with people who are insensitive and rude, and just dont have a clue.Some of the mothers in our foundation have cards that explain their childs skin disease, and give them to those who are staring and inquisitive.Check in with Jean Pickford or Maureen Tierney at the foundation at info@scalyskin.org. for information about cards. In the moms section, there are numerous posts on how they deal with the stares.I am affected with x-linked ichthyosis, so I give the stare right back in a non-confrontational look.What type of ichthyosis does your grandson have? Does your daughter know about FIRST, our website at www.scalyskin.org, and our Ichthyosis Support Network. Possibly we have families down south in your area that you can meet.Take care Jay and I hope to see more of your posts.By for now.
Sincerely,
Central Cal Les
_________________________
Jay

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#22251 - 03/09/07 07:11 AM Re: A question about dealing with public places
JAY Offline
Member

Registered: 02/15/07
Posts: 7
Loc: RANCHO CUCAMONGA CA
Quote:
Originally posted by pauline5:
Hi Jay, I know it must be very hard and awkward for you when people stare like that...I have ichthyosis myself, and my mother used to get angry when people stared and got up and moved seats when we were at the dermatology clinic at the children's hospital of all places...

I kind of took it in my stride, but after a while i kind of fed off my mothers anger...so try and stay calm about it, try and be honest about it to them...

People often look out of ignorance of course, and they have never seen it before, so my philosophy is to understand from their perspective, and i don't get angry, but explain that it is just a skin condition, and it is not contagious...i feel that this puts them more at ease, removes the fear factor...and then you can get on with your day, knowing that they are not freaking out about it...and have been educated at the same time...

Everyone here will have heaps of ideas for you i am sure, one of the most popular ones have been to have little cards to hand out to people...

I just personally feel that there is nothing wrong with face to face honesty, in a very unthreatening manner, which corrects people's misconceptions, in a compassionate personal way...Of course there is no place for outright rudeness from anyone, and that will get you going...

to me...(my personal opinion only) cards give a real business like manner, which almost borders on snobbery, and makes us look like we are superior to everyone else, and that is not going to help us in the long run, we want to be accepted as equal beings, not under or over everyone else...

Heaps of people will help you out here, and embrace all views, after all it is all about trial and error...and what works for you personally...

Love Pauline, and welcome, there are some great mums here to support you...
_________________________
Jay

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#22252 - 03/09/07 09:08 AM Re: A question about dealing with public places
JAY Offline
Member

Registered: 02/15/07
Posts: 7
Loc: RANCHO CUCAMONGA CA
Sorry for not replying sooner to your resonse. Thanks for the advice, I agree that I need to set the example on how my response is to other people so that Brey can learn from it. When in public I talk to him and tell him how cute he is and bring attention to his positive things about him, such as you are so cute! look at that smile! etc and it has actually helped because most everyone smiles and usually I get a positive response.I have come to realize that those who are rude and unaccepting of his condition are the ones who have have the bigger problems.
Thanx again for the advice.
Jay
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Jay

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#22253 - 03/09/07 09:18 AM Re: A question about dealing with public places
JAY Offline
Member

Registered: 02/15/07
Posts: 7
Loc: RANCHO CUCAMONGA CA
Thank you for the website that offers so much education on ichthyosis. I am not 100% sure of the type he has but he is now developing some eye problems the dryness is causing his tear ducts sensitivity and swelling. As he begins to walk he doesn't straighten his legs and fingers so they are considering braces to help with his growing bone structure. It has been a challenge to keep his weight up because he loses weight and protein as he sheds skin. Overall he is doing as well as can be expected I am thankful that he doesn't have a worse case scenario of Ichthyosis and they are working really hard to catch the problems while he is still young. Thanks for the support.
Jay
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Jay

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