Mama06
01-18-2003, 10:45 AM
Hello everyone. I am the mother of a blended family of six. My middle daughter will be 9 y/o in Feb. She has been in the hospital for 2 1/2 months and has a dx of Psychosis NOS, probable Schizophrenia. She had a previous dx of Reactive Attachment Disorder or possibly Conduct Disorder.
Her birth mom, birth grand mom, and possibly even her birth great grand mom all have Schizophrenia ...so the doctors are pretty sure she has inherited this disorder as well.
My question is, am I in the right place to seek advice for a child so young? I am having a difficult time finding others who have dealt with this type of disorder in young children, since it is so rare.
She is home for the first time on a weekend pass, and I may need some advice from those who have 'been there' to help me make this visit as successful as possible. I'm trying really hard not to let her be 'set up for failure' by circumstances...and I'm also trying very hard not to biulld some sort of 'fairy tale' home that cannot possibly be maintained on a long term basis.
I feel like I'm walking a tight rope across the Grand Canyon right now and if I slip, I could make it harder on my daughter than it already is.
If this isn't the right place to talk about issues for someone so young...do any of you know of another board that might fit the bill?
Several months back I was regularly posting on a message board for parents of children with conduct disorders, but since this isn't actually her problem...like we once thought it might be...I thought I'd try to find a more specific resource.
Her birth mom, birth grand mom, and possibly even her birth great grand mom all have Schizophrenia ...so the doctors are pretty sure she has inherited this disorder as well.
My question is, am I in the right place to seek advice for a child so young? I am having a difficult time finding others who have dealt with this type of disorder in young children, since it is so rare.
She is home for the first time on a weekend pass, and I may need some advice from those who have 'been there' to help me make this visit as successful as possible. I'm trying really hard not to let her be 'set up for failure' by circumstances...and I'm also trying very hard not to biulld some sort of 'fairy tale' home that cannot possibly be maintained on a long term basis.
I feel like I'm walking a tight rope across the Grand Canyon right now and if I slip, I could make it harder on my daughter than it already is.
If this isn't the right place to talk about issues for someone so young...do any of you know of another board that might fit the bill?
Several months back I was regularly posting on a message board for parents of children with conduct disorders, but since this isn't actually her problem...like we once thought it might be...I thought I'd try to find a more specific resource.
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Loch Ness
01-19-2003, 09:00 PM
My cousin has schizophrenia, and the doctors took a very long time in diagnosing it. She was a senior in high school before anyone was able to diagnose her with this illness.
I know that this is really hard on my cousin, because she knows she is different. She is now in her twenties. She was living in an assisted living community and met a young man who is bi-polar. They are now married. That's been really hard to accept, but she seems to be happy.
When Claire was younger, she was always different. I know that she latched onto very bad friends that would put her down. She became more and more distant. I don't know if she was schizophrenic back then, or if her illness worsened due to lack of treatment. She had a horrible doctor.
I know my aunt had a very hard time with this. I know it is hard for the families to understand and deal with this illness as well. Even with her medications, Claire still has some weird symptoms.
My e-mail is [removed].net if you are interested in e-mailing her personally.
[Please read and follow the board posting guidelines.]
[This message has been edited by moderator2 (edited 01-20-2003).]
I know that this is really hard on my cousin, because she knows she is different. She is now in her twenties. She was living in an assisted living community and met a young man who is bi-polar. They are now married. That's been really hard to accept, but she seems to be happy.
When Claire was younger, she was always different. I know that she latched onto very bad friends that would put her down. She became more and more distant. I don't know if she was schizophrenic back then, or if her illness worsened due to lack of treatment. She had a horrible doctor.
I know my aunt had a very hard time with this. I know it is hard for the families to understand and deal with this illness as well. Even with her medications, Claire still has some weird symptoms.
My e-mail is [removed].net if you are interested in e-mailing her personally.
[Please read and follow the board posting guidelines.]
[This message has been edited by moderator2 (edited 01-20-2003).]
Mama06
01-20-2003, 08:42 AM
Loch Ness: Thanks for the reply. It's interesting that you wrote about it being hard on your cousin because she knew she was different. Our daughter had her first overnight pass this weekend and on her first night home, she became very sad and cried. One of her reasons was that she said that she felt like she didn't belong in our family because she said she feels different.
She seemed to think that maybe she would feel less different if she were with her birth mother, because her birth mom also has mental illness. My husband and I did our best to assure her that everyone in our family (and all families) was different in some ways...but we all still fit together. Also, that just because you have a condition, it doesn't mean you have to feel like you are not as good as other people. I told her that just because I have to take medicine every day for my blood pressure...it doesn't mean that I'm not as good of a person as the mommy next door who doesn't have to take pills.
I'm hoping a little bit of what we said to her sunk in and she begins to take it to heart...but I know that over the years, she will probably go through times of feeling isolated and different...that's just human nature...even if you don't have any significant conditions...especially when you hit those teen years that are just around the corner for our daughter.
I know I'll never have all the answers for our daughter, and I also know that the questions will probably get harder as she gets older...but I'm going to do everything I can to give her the best answers I can find...and teach her how to find answers for herself.
Maybe some of your cousin's experiences as a child can help me to better understand what my daughter is going through so that I can help her learn to cope with the things she will face in the coming years.
Thank again. :)
[Please read and follow the board posting guidelines.]
[This message has been edited by moderator2 (edited 01-20-2003).]
She seemed to think that maybe she would feel less different if she were with her birth mother, because her birth mom also has mental illness. My husband and I did our best to assure her that everyone in our family (and all families) was different in some ways...but we all still fit together. Also, that just because you have a condition, it doesn't mean you have to feel like you are not as good as other people. I told her that just because I have to take medicine every day for my blood pressure...it doesn't mean that I'm not as good of a person as the mommy next door who doesn't have to take pills.
I'm hoping a little bit of what we said to her sunk in and she begins to take it to heart...but I know that over the years, she will probably go through times of feeling isolated and different...that's just human nature...even if you don't have any significant conditions...especially when you hit those teen years that are just around the corner for our daughter.
I know I'll never have all the answers for our daughter, and I also know that the questions will probably get harder as she gets older...but I'm going to do everything I can to give her the best answers I can find...and teach her how to find answers for herself.
Maybe some of your cousin's experiences as a child can help me to better understand what my daughter is going through so that I can help her learn to cope with the things she will face in the coming years.
Thank again. :)
[Please read and follow the board posting guidelines.]
[This message has been edited by moderator2 (edited 01-20-2003).]
Taurus
01-20-2003, 11:32 AM
I'm not going to be of much help, but I do have a graduate classmate who's son had a break at age seven. So this is very possible. Not always does a psychotic break lead to a full blown schizophrenia, but if there's a genetic pattern this might be life time. I read somewhere that the earlier the break happens and the better in terms of treatment. I think kids are more open to treatment than teenagers for example. Don't worry about making the wrong move, it's really a learning process. Just keep on your reading.
LauraL
01-26-2003, 11:58 AM
Hey Mama6,
LauraL
01-26-2003, 12:18 PM
Hey Mama6,
My son was diagnosed schizo-affective at the age of 16. That was 8 years ago. It has been an incredible battle. Hospitalizations, jail, broken marriage,etc...you name it. What I have learned is you must have great patience. Do not respond directly, in an argumentative manner,to your daughter when she is actively psychotic. Your logic and reason will be lost to her. Look for the times when she is more accessible and calm. These times will come and go and may only last for minutes at a time. Try not to overload her with too much information. Don't ever make it about her, make it about the illness. Get as smart as you can about treatments and meds. This will be more than difficult considering her age. A lot of the meds out there haven't been tested on children. How effective they are on children who haven't reached puberty yet is still a crap shoot.
Maintain a sense of humor. The times you can sit down and have a laugh together over something silly will be precious to both of you. Your words of encouragement are getting through to her even though it isn't obvious. She will file these things in a safe part of her brain for retrieval when the time is right.
This is my first time posting and am feeling somewhat overwhelmed. I'll get back to you with more stuff when I think of it. I've gotta million of em. Just hang in there. We (parents) are our childrens strongest and sometimes only advocates. It's hard to believe it at times, but remember, no matter how tough it is for you, or how devestating your life has become, it's infinitely worse for your loved one.
Take care,
Laura
My son was diagnosed schizo-affective at the age of 16. That was 8 years ago. It has been an incredible battle. Hospitalizations, jail, broken marriage,etc...you name it. What I have learned is you must have great patience. Do not respond directly, in an argumentative manner,to your daughter when she is actively psychotic. Your logic and reason will be lost to her. Look for the times when she is more accessible and calm. These times will come and go and may only last for minutes at a time. Try not to overload her with too much information. Don't ever make it about her, make it about the illness. Get as smart as you can about treatments and meds. This will be more than difficult considering her age. A lot of the meds out there haven't been tested on children. How effective they are on children who haven't reached puberty yet is still a crap shoot.
Maintain a sense of humor. The times you can sit down and have a laugh together over something silly will be precious to both of you. Your words of encouragement are getting through to her even though it isn't obvious. She will file these things in a safe part of her brain for retrieval when the time is right.
This is my first time posting and am feeling somewhat overwhelmed. I'll get back to you with more stuff when I think of it. I've gotta million of em. Just hang in there. We (parents) are our childrens strongest and sometimes only advocates. It's hard to believe it at times, but remember, no matter how tough it is for you, or how devestating your life has become, it's infinitely worse for your loved one.
Take care,
Laura