lj-111
06-27-2001, 04:28 AM
Hello,
PREVIOUS READERS PLEASE NOTE CHANGES MADE DURING EDITING THIS POST!!! THANX
My name is Lisa and I can be seen on the Fibromyalgia boards when I am able to go on.
This is my situation: My friend and her husband just inherited the custody of his niece "Julie" due to a tragedy which has left her, otherwise, abandoned. Yesterday was the first day and night that Julie spent in her new home with her uncle and Aunt (my friend Mavis). They are virtually strangers aside from a few family gatherings on hollidays, as my friend has just recently married into Julie's family.
The major problem is, she knows absolutely nothing at all about down syndrome or where to begin to care for Julie even though Julie
is already 28 years old, not a small child. God knows my friend is wonderfully patient and caring and is probably the reason he chose her, but I am sure this is going to be a living nightmare if she isn't careful.
Please keep in mind that I know nothing about Downs nor about people who suffer from it, so please forgive me if I come off crass, unfeeling or just plain dumb!! I read a lot of the posts on this and other boards and detect a note of resentment from certain individuals about the way some of us "dummies" address this issue. I can assure you that I love all people and to me every body is qually special and important, with or without, special needs... That having been said...
Well, I went over to see Mavis (my friend)today to take her what little info I could find online about Downs. I was shocked quite frankly. In my opinion the young woman is not that disabled. I say it that way because for instance, on a scale of 1-10 (10 being most severe) I personally noted her severity of DS to be only about a 4, maybe a 5. I was expecting to see a very dibilitated girl due to the fact that Mavis sounded so desperate on the phone. In my own observation during my 4 hour visit, I was quite impressed with her. I can honestly say, I wish every one else was as polite and sweetly dispositioned as she was with me. I also found her to be extremely clever, which is something I seldom find in 90% of all people I have to deal with on a daily basis.
Obviously she didn't act her age of 28, she seemed more like 15-16. Like a giddy, innocent curious teenager. She was however very vocal. Her voice was loud and boisterous, and she would interrupt conversations like a small child would, but I also caught her trying not to interrupt and I was very impressed by that as well. She did a lot of joking around and laughed at almost every thing. It was as though she could find humor and light in just the dullest, average things.
She seemed to go off on her own and find things to keep her busy as though she was
quite content. I would have been bored to death and complaining about it when I was a kid. She struck me as having a lot patients with her surroundings. She was well groomed and Mavis said she does all that herself, the bathing, dressing and all that. She likes to clean, and had done a few things while I was there to help around the house. I told my friend, "Man Mavis, why are you so upset?" I'm serious!! I know she would be a burden just like any child or person just dumped on you like that out of the blue, I know she's a handful like a kid would be, but oh well!!
Unfortunatley, Mavis had an answer to my question that I was, not at all, prepared to hear. I should have known as good hearted as Mavis is, it would have to be serious for her to be so leery of someone so innocent.
First of all, she was adopted. Her adoptive parents (the in-laws) are both alive. The mom has been in a nursing home for 6 years and the Dad has been caring for Julie all on his own at 61 years old. Sadly enough, he had a massive heart attack last week and said not to recover and has brain damage and doesn't even remember who Julie is.
No one in the entire family on Julie's fathers side would even talk about taking her
and 2 people on the mother's side had already
gave it a go and said they couldn't handle it. Mavis said they all acted like she was the plague or something. Mavis got so mad she packed Julie up and brought her up here 400 miles away from the life she has always known. It was either that or the state was going to take her. She just couldn't stand the thought of it, even though she doesn't even know Julie. I totally agree with her. So that is why she is here and Julie even said to me, "Yeah, I think I'm a handful those people don't want a handful." She made a couple of comments referring to be unwanted even though we made sure not talk about it around her. That tells me she is totally aware she is unwanted. Mavis said she was also very spoiled by her father too. You know, spoiled to the point that it would cause behaviour problems in any child. At least I think it does.
Julie also seems to have a horrible time with her temper. My friend said that Julie has went off and beat up one of the other
uncles with a baseball bat when she didn't get her way. On another occasion, which evidently was recently, she got super mad because she couldn't go to church in the morning instead of night,(due to an unavoidable change in plans) and she went off again. This particular time, she foamed at the mouth in anger and beat on her chest and head and scratched herself up real bad. She told Mavis that the other gilr scratched her up and that it wasn't true what they said. Who is to really say?
I swear to you I don't see it in her, but I am sure it's possible with DS, I just don't know. I told my friend that maybe they made it all up to get rid of her or make them not look so bad dumping her. Then, maybe it is true. I didn't realize my friend Mavis had spent the last 6 days and nights with Julie in her home town before coming back up here. I asked her if she went off on her and she said no, but she did get mad a couple of times and madder than she should have. Mavis is so afraid she is gonna get real mad about something and snap. The medical staff etc.,
in her hometown, that deal with her every day, say she is capable of throwing a "fit" on occasion. I asked about meds and she is on Prozac. No, not Prozac, what the heck is that drug? Anyway, it's the same crap with a different name.
She is also running up a long distance bill from our city to her home town. Poor baby, but were talking in state long distance calls in broad daylight. I was there 4 hours and she called 3 times about 10-15 minutes per call. Mavis said she was doing it all the time despite her telling her not to. I explained to her why it was so expensive and how she should make a schedule to make her calls once or twice a week. She was very agreeing. She was shocked when I explained just how much money she was costing her Aunt Mavis. It upset her that it was costing so much and said she didn't want to do that any more. I hope it sticks, but who knows. The poor kid needs something for God sakes to keep her connected with her life and her dad and mom, they are still alive, ya know? That would be hard on any person.
Anyway, they are investigating places to take her. Not state-run facilities, or nursing homes, or hospitals, but a place that is like a community where they can be as independant as possible and still have a dgree of "Safety Supervision"... They have found one place that is covered under her SS plan and insurance etc. Mavis is going next week to spend the entire day there with Julie and learn all about it and make sure she will be safe and she likes it. They will be allowed to visit her during the week days
and keep her on any weekends they want to after the first 30 days. The only problem is it will take at least 4-6 months and maybe even longer on a waiting list to get her in. Evidently the place is very popular with persons with DS that want to live as normally and productively as they can on their own. It is also the only one of its kind around.
My question is to all of you parents or caregivers that have any knowledge or experience with DS, especially with a person who has a bad temper or any behaviour problems. What did you, or do you, do when a person with DS acts out in this way? Are there any web sites or books or videos or any thing that my friend can use to assist her in handling and coping with situations such as I have mentioned. I mean, what would YOU do?
I know someone out there has got to care, especially if you're a parent of a child with DS. C'mon, I care and I have nothing to do with it. If I wasn't desperate I sure wouldn't be on here begging for help. Imagine how you would feel if you woke up one seriously busy day, as usual, to find that you were the proud "new" parents of a 28 year old child with DS? I'd be scared too, especially if I'd heard the horror stories they all told her. Please help if you can, if not, at least pray for them.
I am very proud of my friend. She is 53 years old and very, very busy. There is no way she has the space in her life or time for this young woman, but it's just like her to find some any way. All of us should be so selfless... I hope you have some advice or addresses or URLs or something...
Thank You so much for your time and patients in reading this story...
Lj-111
Wed-June 27/2001 9:00pm
[This message has been edited by lj-111 (edited 06-27-2001).]
PREVIOUS READERS PLEASE NOTE CHANGES MADE DURING EDITING THIS POST!!! THANX
My name is Lisa and I can be seen on the Fibromyalgia boards when I am able to go on.
This is my situation: My friend and her husband just inherited the custody of his niece "Julie" due to a tragedy which has left her, otherwise, abandoned. Yesterday was the first day and night that Julie spent in her new home with her uncle and Aunt (my friend Mavis). They are virtually strangers aside from a few family gatherings on hollidays, as my friend has just recently married into Julie's family.
The major problem is, she knows absolutely nothing at all about down syndrome or where to begin to care for Julie even though Julie
is already 28 years old, not a small child. God knows my friend is wonderfully patient and caring and is probably the reason he chose her, but I am sure this is going to be a living nightmare if she isn't careful.
Please keep in mind that I know nothing about Downs nor about people who suffer from it, so please forgive me if I come off crass, unfeeling or just plain dumb!! I read a lot of the posts on this and other boards and detect a note of resentment from certain individuals about the way some of us "dummies" address this issue. I can assure you that I love all people and to me every body is qually special and important, with or without, special needs... That having been said...
Well, I went over to see Mavis (my friend)today to take her what little info I could find online about Downs. I was shocked quite frankly. In my opinion the young woman is not that disabled. I say it that way because for instance, on a scale of 1-10 (10 being most severe) I personally noted her severity of DS to be only about a 4, maybe a 5. I was expecting to see a very dibilitated girl due to the fact that Mavis sounded so desperate on the phone. In my own observation during my 4 hour visit, I was quite impressed with her. I can honestly say, I wish every one else was as polite and sweetly dispositioned as she was with me. I also found her to be extremely clever, which is something I seldom find in 90% of all people I have to deal with on a daily basis.
Obviously she didn't act her age of 28, she seemed more like 15-16. Like a giddy, innocent curious teenager. She was however very vocal. Her voice was loud and boisterous, and she would interrupt conversations like a small child would, but I also caught her trying not to interrupt and I was very impressed by that as well. She did a lot of joking around and laughed at almost every thing. It was as though she could find humor and light in just the dullest, average things.
She seemed to go off on her own and find things to keep her busy as though she was
quite content. I would have been bored to death and complaining about it when I was a kid. She struck me as having a lot patients with her surroundings. She was well groomed and Mavis said she does all that herself, the bathing, dressing and all that. She likes to clean, and had done a few things while I was there to help around the house. I told my friend, "Man Mavis, why are you so upset?" I'm serious!! I know she would be a burden just like any child or person just dumped on you like that out of the blue, I know she's a handful like a kid would be, but oh well!!
Unfortunatley, Mavis had an answer to my question that I was, not at all, prepared to hear. I should have known as good hearted as Mavis is, it would have to be serious for her to be so leery of someone so innocent.
First of all, she was adopted. Her adoptive parents (the in-laws) are both alive. The mom has been in a nursing home for 6 years and the Dad has been caring for Julie all on his own at 61 years old. Sadly enough, he had a massive heart attack last week and said not to recover and has brain damage and doesn't even remember who Julie is.
No one in the entire family on Julie's fathers side would even talk about taking her
and 2 people on the mother's side had already
gave it a go and said they couldn't handle it. Mavis said they all acted like she was the plague or something. Mavis got so mad she packed Julie up and brought her up here 400 miles away from the life she has always known. It was either that or the state was going to take her. She just couldn't stand the thought of it, even though she doesn't even know Julie. I totally agree with her. So that is why she is here and Julie even said to me, "Yeah, I think I'm a handful those people don't want a handful." She made a couple of comments referring to be unwanted even though we made sure not talk about it around her. That tells me she is totally aware she is unwanted. Mavis said she was also very spoiled by her father too. You know, spoiled to the point that it would cause behaviour problems in any child. At least I think it does.
Julie also seems to have a horrible time with her temper. My friend said that Julie has went off and beat up one of the other
uncles with a baseball bat when she didn't get her way. On another occasion, which evidently was recently, she got super mad because she couldn't go to church in the morning instead of night,(due to an unavoidable change in plans) and she went off again. This particular time, she foamed at the mouth in anger and beat on her chest and head and scratched herself up real bad. She told Mavis that the other gilr scratched her up and that it wasn't true what they said. Who is to really say?
I swear to you I don't see it in her, but I am sure it's possible with DS, I just don't know. I told my friend that maybe they made it all up to get rid of her or make them not look so bad dumping her. Then, maybe it is true. I didn't realize my friend Mavis had spent the last 6 days and nights with Julie in her home town before coming back up here. I asked her if she went off on her and she said no, but she did get mad a couple of times and madder than she should have. Mavis is so afraid she is gonna get real mad about something and snap. The medical staff etc.,
in her hometown, that deal with her every day, say she is capable of throwing a "fit" on occasion. I asked about meds and she is on Prozac. No, not Prozac, what the heck is that drug? Anyway, it's the same crap with a different name.
She is also running up a long distance bill from our city to her home town. Poor baby, but were talking in state long distance calls in broad daylight. I was there 4 hours and she called 3 times about 10-15 minutes per call. Mavis said she was doing it all the time despite her telling her not to. I explained to her why it was so expensive and how she should make a schedule to make her calls once or twice a week. She was very agreeing. She was shocked when I explained just how much money she was costing her Aunt Mavis. It upset her that it was costing so much and said she didn't want to do that any more. I hope it sticks, but who knows. The poor kid needs something for God sakes to keep her connected with her life and her dad and mom, they are still alive, ya know? That would be hard on any person.
Anyway, they are investigating places to take her. Not state-run facilities, or nursing homes, or hospitals, but a place that is like a community where they can be as independant as possible and still have a dgree of "Safety Supervision"... They have found one place that is covered under her SS plan and insurance etc. Mavis is going next week to spend the entire day there with Julie and learn all about it and make sure she will be safe and she likes it. They will be allowed to visit her during the week days
and keep her on any weekends they want to after the first 30 days. The only problem is it will take at least 4-6 months and maybe even longer on a waiting list to get her in. Evidently the place is very popular with persons with DS that want to live as normally and productively as they can on their own. It is also the only one of its kind around.
My question is to all of you parents or caregivers that have any knowledge or experience with DS, especially with a person who has a bad temper or any behaviour problems. What did you, or do you, do when a person with DS acts out in this way? Are there any web sites or books or videos or any thing that my friend can use to assist her in handling and coping with situations such as I have mentioned. I mean, what would YOU do?
I know someone out there has got to care, especially if you're a parent of a child with DS. C'mon, I care and I have nothing to do with it. If I wasn't desperate I sure wouldn't be on here begging for help. Imagine how you would feel if you woke up one seriously busy day, as usual, to find that you were the proud "new" parents of a 28 year old child with DS? I'd be scared too, especially if I'd heard the horror stories they all told her. Please help if you can, if not, at least pray for them.
I am very proud of my friend. She is 53 years old and very, very busy. There is no way she has the space in her life or time for this young woman, but it's just like her to find some any way. All of us should be so selfless... I hope you have some advice or addresses or URLs or something...
Thank You so much for your time and patients in reading this story...
Lj-111
Wed-June 27/2001 9:00pm
[This message has been edited by lj-111 (edited 06-27-2001).]