How to tell older sibling about dx?

Re: How to tell older sibling about dx?

• kcisthebombdotcom member

  July 2013

  We've recently had to cross this bridge. My daughter has epilepsy and my son asked me last week what was wrong with his sister after I had gotten off the phone with the neurologists office. I said she had epilepsy and explained it in the most simple way I could think of. He does tell people, but he's young enough to not be able to pronounce the word too clearly. I absolutely think you should share the info with him-the younger the better IMO. 

  

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• august06mom member

  July 2013

  Thanks ladies -- those are all very good points. I would like to avoid a "big reveal." Thank you for the links too. I don't think he realizes anything is different about his brother because he doesn't know any differently. There's also quite a large age gap, so he just chalks most things up to being a toddler. Most of DS2's flags are somewhat subtle -- he doesn't know that his brother should have better eye contact, or that you're not supposed to ignore people when they walk in the room.  

  I don't think I've come to terms with this myself, so I'm not sure how to share it. I keep thinking that with enough services now, he'll "grow out of his symptoms," but I know this could very well be wishful thinking.

  

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• CaptainSerious member

  July 2013

  My sons are both adopted, with complicated bith/family histories.  The elder aslo has a fetal alcohol disorder and had a cardiac issue, the younger has a disorder in which tumors grow on your nervous tissue and recurring issues dur to his birth situation.  In the adoption world, common theory is to be completely honest, in an age appropriate way, with the child's story, but also to guard the child's privacy. The belief (and from my experience, it seems to be true) is that if you tell the child everything before they hit adolencense, they will accept it in a matter-of-fact way and learn that they can discuss anything with you. if you hide it, or wait to tell them when they are older, they will find out eventually, from you or someone else, and it can breed mistrust or resentment because you weren't honest with them. that being said, we also want to guard their privacy. Kidsa don't always understand that others may use information to hurt them, even if their is nothing shameful about it. Schools, for example, still don't understand FASD and often give up on these kids as "unteachable." we are much better off with them just knowing of his actual, measurable delays without knowing the diagnoisis and likely cause.  so, we give the information in little bits. we talk about alcoholism and how hard it is for an alcoholic to quit drinking. We talk about how the brain is different. We talk about privacy, and what kinds of things are okay to share and why some things are better kept personal and private. Next we will talk about how alcohol in pregnancy can affect babies, and eventually, we'll say that may be why he has a hard time learning and why his heart needed fixing. we talk in circles, to make sure he understands and to drive home important parts. We keep talking about it so he understands it's not his fault, his mother couldn't stop, and he's not stupid, but his brain is different, and the importance of privacy. since we have so much to addree, we do this in therapy and at home, and with the whole family. their conditions will be a continuing discourse as they understand more, and we will all learn together what it means to have/be in a family with someone who has these conditions. it's not been easy, but it IS remarkable how they have been accepting of all this information and how they have handled it all with grace on their levels.  Good luck.

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• august06mom member

  July 2013

  CaptainSerious:

  My sons are both adopted, with complicated bith/family histories.  The elder aslo has a fetal alcohol disorder and had a cardiac issue, the younger has a disorder in which tumors grow on your nervous tissue and recurring issues dur to his birth situation.  In the adoption world, common theory is to be completely honest, in an age appropriate way, with the child's story, but also to guard the child's privacy. The belief (and from my experience, it seems to be true) is that if you tell the child everything before they hit adolencense, they will accept it in a matter-of-fact way and learn that they can discuss anything with you. if you hide it, or wait to tell them when they are older, they will find out eventually, from you or someone else, and it can breed mistrust or resentment because you weren't honest with them. that being said, we also want to guard their privacy. Kidsa don't always understand that others may use information to hurt them, even if their is nothing shameful about it. Schools, for example, still don't understand FASD and often give up on these kids as "unteachable." we are much better off with them just knowing of his actual, measurable delays without knowing the diagnoisis and likely cause.  so, we give the information in little bits. we talk about alcoholism and how hard it is for an alcoholic to quit drinking. We talk about how the brain is different. We talk about privacy, and what kinds of things are okay to share and why some things are better kept personal and private. Next we will talk about how alcohol in pregnancy can affect babies, and eventually, we'll say that may be why he has a hard time learning and why his heart needed fixing. we talk in circles, to make sure he understands and to drive home important parts. We keep talking about it so he understands it's not his fault, his mother couldn't stop, and he's not stupid, but his brain is different, and the importance of privacy. since we have so much to addree, we do this in therapy and at home, and with the whole family. their conditions will be a continuing discourse as they understand more, and we will all learn together what it means to have/be in a family with someone who has these conditions. it's not been easy, but it IS remarkable how they have been accepting of all this information and how they have handled it all with grace on their levels.  Good luck.

   

  Thank you for sharing.

  

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