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What does everyone who works do? how do you mange around difficult child's?
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<blockquote data-quote="dreamer" data-source="post: 200665" data-attributes="member: 1697"><p>difficult child was a difficult child from birth. AT first, she was my only child and it was not all so hard. In her eaarlier years she was a perfectionist and anxious but, she participated in things, and did not have the same seperation anxiety she has now. In early elementary school, her younger sister was involved in most things with her, and that helped some. I worked very close to home, so I was not haveing to commute or travel far etc, working in a nurseing home just a few blocks from home. My kids schools are also just a couple short blocks away. So difficult child was in a LOT of organized surpervised activities, and husband and I worked opposite shifts so one or the other of us was always with the kids. As husband fell ill, he did not work. Gradually I worked more..plus tended to his needs as well as the kids, but the kids were then getting a little older, and easy child helped a LOT. Then husband got so ill and so did difficult child that we were awarded help by the state due to husband and difficult children illnesses. So we got some respite in our home weekly. and we had many of the therapy in our home, many social workers etc in and out daily for over 5 years. By then husband could drive short distances and he drove the kids to daily extracurricular activities and daily therapies if the therapies were not at home-or whatever. It was a very complicated time.....and by then me and husband were both in day treatment programs ourself--part of the stipulation to get help for our difficult child. and partly becuz husband was quite mentally ill. We alternated days at the day treatment progam, one of us at day treatment, the other home with the kids, and usually a therapist, social worker, respite worker or homemaker person was at our house....unless the kids were in school, and often those people also did go to difficult child while she was at school. For us the school issues did not get unbearable and intolerable until middle school for difficult child. She did do what your dtr does, go to school nurses office. difficult child landed in psychiatric hospital in 7th grade and post psychiatric hospital things got terribly worse, partly becuz her psychiatric hospital stay freaked our school out. difficult child landed in psychiatric hospital becuz our facility for mental health lost their only psychiatrist and could not find a replacement for 11 months, and difficult children medications were causeing problems instead ofbeing helpful, but there was noone at the facility to do anything about it. School got weirded out, nervous to have a child ill enough to actually end up in a psychiatric hospital so they became frightened of difficult child. So it was only once difficult child was in 8th graade that she began to have school anxiety. </p><p>I also worked the nite shift, thru it all, and got very very little sleep ever..tending to everything. </p><p>By then I had fallen very very very ill myself and spent time as a quadriplegic. </p><p>How weird, but.I was then HOME 24-7 and it resulted in difficult child haveing me right here all the time. Even tho I could not really DO anything....it affected her. Becuz I was so ill, I was awarded soc sec disability on my first application....and I wound up staying home since then. After difficult child was in psychiatric hospital, school got much worse, BUT our county mental health people got this stupid idea difficult child was "fine" and they stopped all therapies in home help, psychiatrists and tdocs. From a website for parents of bipolar children I met some people online that conected us to our last psychiatrist for difficult child who was instrumental in helping difficult child become more stable, more relaxed, and this saintly psychiatrist also gave me and difficult child her email and difficult child emailed this psychiatrist ALL the time.....and difficult child did much better haveing someone there on other end of keyboard.....and becuz of my disability I no longer had to figure out how I was going to keep our roof over our head or feed us. I no longer hd to panic wondering who would be with my kids etc, becuz finding anyone to watch difficult child for even oone hour was prolly the most difficult problem of all. And, truth be told very often, anyone who was here under the premise of "helping" caused more trouble than any help they ever gave. In the very end, in hindsight, it turns out, in my opinion.....seemed the more help we had, the less helpful it was, and the more problems it caused. </p><p>Also in hindsight, my easy child bless her heart was a huge help- unfair to her.....and yes of course it has had an effect on the kind of person she is now.....she is quite independant, and strong with strong ideas and she backs up her ideas with her effort. Poor kid, she wound up haveing to do more than I am happy with. </p><p></p><p>Truth is we had to accept a life that was not anything like "normal" For a long time we lived under heavy scrutiny and got help from county and state and had to answer for every brathe we took, everything was analyzed, in exchange for help just working and going to school etc. And between all the appts and etc our housework fell further and further out of priority. Family meals were eaten out of lunchboxes in mentalhealth care facilities waiting areas, or in car raceing from one appointment to another.....</p><p>AND I was very familiar with human resources office for my employer, with me often getting leave under "Family Medical Leave Act" Sometimes I took it in small increments of an hour a week.sometimes I took consecutive blocks of time all at once, it depended on how my difficult child and husband were doing. </p><p></p><p>A side note....I used to hate mental illness in a child becuz it seemed so few people had a clue what life with a seriously mentally ill child was like. Then my husband got so sick.and I found out people also do not understand what it is like to have a dependant spouse with serious mental illness...(catatonia alternateing with psychosis, and rages) </p><p>and THEN I got to find out what it is like to have your own body entirely fail you completely. I think THATS when I really truly began to understand betetr about my difficult child and her brain that did not work like other peoples. </p><p>LOL- well, then my son injurd his eye and whoo boy me and him wound up at Ronald McDonald House for the better part of almost 2 years....and there my son was with a very non mental illness disability......and I found out for absolute certain------people just do not get it about disabilities at all, no matter if it is mental or physical. No matter if it is you, a child or a spouse. The IEPs and childcare issues etc did not go any better with a physically disabled child than they went with a mentally disabled child. And trying to find work and work it around your own, your spouses or your childrens disabilities can be very very difficult indeed. Bosses do not understand, coworkers do not understand.....Hmmm.I worked 2 jobs full time, sometimes 3 jobs, ever since I was 12 years old and turned out to the streets. I never used a single sick day and never had a vacation day at all from age 12 until I had difficult child. That changed EVERYTHING. </p><p></p><p>I know that working a different shift than your partner is hard, no fun, and it just stinks. But for us, that was the best thing we could come up with when my husband was still well enough to be able to take care of the kids. When I no longer had him to back me up, it became helter skelter hit or miss and it is just by the grace of G-d that we never had any worse tragedy related to the mad scramable to keep things going regarding childcare. Seems no matter HOW carefully we made plans, no matter who the plans were with, usually county respite, or tdocs etc.....it fell apart more than it ever fell into place. </p><p>But we limped thru it.</p><p></p><p>Now difficult child will be 20 in a couple weeks. easy child is now 18...and my son is a very independant 13. difficult child STILL needs someone with her at all times......becuz of how sick easy child has been with her preg, she never gets left alone. Son is technically too young to leave alone. husband is sick enough he cannot be left alone, but.....all their needs are different enough, they can be left now with each other. difficult child panics when alone, she cannot even be in a room alone....but aside from that she does OK. easy child is weak from her nonstop illness.....and is prone to falls, right now..so we walk beside her most of the time if she is up and about. Her judgement is very good re any issues here at home. She is intelligent and capable. Son of course is young, but smart, has good common sense, the only issue is that he is homeschooled now and by law must be with me or husband dureing school hours. husband is NOT capable, but no longer rages, but would passive suicide or whatever if noone took him to bathroom or told him to eat his meal or whatever. BUT the kids have grown up with him being that way and handle it as a matter of routine. They could do it in their sleep. </p><p>So, the whole family now has grown enough and somehow everyones needs are different enough between them all, things now do work out. THat awful horrible crazy time did not last forever. with time we all grew in certain ways and adjusted and somehow just found ways to make Life work out. </p><p>Hm, I am reading this and it sounds worse than what it is now..but the time a few years ago? Whew, it WAS a horrid nitemare time.....but at the time, I was so immersed in dealing with it, I had very little time or energy to SEE it for how bad it was kind of? </p><p>We really had so few choices. Our Life is what it is.it was how it was.....I did what I had to do, somehow. None of it was at all even close to anything I ever dreamed, imagined or planned. Not even close. I think we lived on a wing a song and a prayer. I do remember we were given one choice.one I could not accept---give the kids up-----becuz difficult child was dififcult.......instead it built my resolve to just try harder to rise up and meet the challenges.BUT i also am VERY aware a lot of things were just good luck that we made it thru somehow. Ironically most of our crisises were dureing the times when the professionals were in charge of my kids. Looking back, I tend to think THEY made more mistakes than *I* did. </p><p></p><p>THe other day I was going to post something about how sometimes more "help" does not turn out to be helpful. </p><p>Kinda like "less is more" </p><p>dureing that horrible time, difficult child had 1-1 daily, and girls social group for social skills in another town 3 times weekly, and another girls peer pressure group twice a week, in yet another town, and she had siblings group with her siblings once a week, and parent-child sessions once a week, and we had marriage therapy once a week and family whole family once a week, and she saw her psychiatrist weekly an hour away....plus me and husband were in day treatment, plus each child had their own mentor once a week, and we had a behavioral therapist working in our house and a WRAP facilittor in our home, and my girls each had a "Big" from big brothers big sisters once a week, plus me and husband each had our own psychiatrist and therapist, tdocs weekly, psychiatrists monthly....plus all 3 kids were in tae kwon do for 7 years and all 3 kids were in scouts, band and chorus....</p><p>AND difficult child had a neurologist in chicago once a month, and son had 4 neurologists all in chicago----and husband had appts at VA an hour and a half away 4 times per week. </p><p>I had a calender the size of a whole wall here, and we kept everything on it and had to consult that calender for time to use restroom. It was a horrible complicated time. and the end result, in my opinion-my kids never did learn how to think for themself, how to do anything without a professional first saying ok do it. I balked strongly against all this stuff going on, it sure was NO way to live. BUT .....our school and CPS in their infinite wisdom required us to keep this insane schedule.....and I was working full time the whole time. </p><p>SOmetimes I had to race into a bathroom at work to talk on cell to coordinate things at home..my job did not permit phone calls or cell phones...heck, I was taking care of patients. </p><p>BUT part of that type of job was I could choose to work overnite.or weekends, or holidays......and that helped. </p><p></p><p>SOmehow someway you prolly WILL figure out how to make things work out for you. And someday you might look back in amazement and awe at yourself. </p><p></p><p>Good luck. I'm not sure there is any one right answer.</p></blockquote><p></p>
[QUOTE="dreamer, post: 200665, member: 1697"] difficult child was a difficult child from birth. AT first, she was my only child and it was not all so hard. In her eaarlier years she was a perfectionist and anxious but, she participated in things, and did not have the same seperation anxiety she has now. In early elementary school, her younger sister was involved in most things with her, and that helped some. I worked very close to home, so I was not haveing to commute or travel far etc, working in a nurseing home just a few blocks from home. My kids schools are also just a couple short blocks away. So difficult child was in a LOT of organized surpervised activities, and husband and I worked opposite shifts so one or the other of us was always with the kids. As husband fell ill, he did not work. Gradually I worked more..plus tended to his needs as well as the kids, but the kids were then getting a little older, and easy child helped a LOT. Then husband got so ill and so did difficult child that we were awarded help by the state due to husband and difficult children illnesses. So we got some respite in our home weekly. and we had many of the therapy in our home, many social workers etc in and out daily for over 5 years. By then husband could drive short distances and he drove the kids to daily extracurricular activities and daily therapies if the therapies were not at home-or whatever. It was a very complicated time.....and by then me and husband were both in day treatment programs ourself--part of the stipulation to get help for our difficult child. and partly becuz husband was quite mentally ill. We alternated days at the day treatment progam, one of us at day treatment, the other home with the kids, and usually a therapist, social worker, respite worker or homemaker person was at our house....unless the kids were in school, and often those people also did go to difficult child while she was at school. For us the school issues did not get unbearable and intolerable until middle school for difficult child. She did do what your dtr does, go to school nurses office. difficult child landed in psychiatric hospital in 7th grade and post psychiatric hospital things got terribly worse, partly becuz her psychiatric hospital stay freaked our school out. difficult child landed in psychiatric hospital becuz our facility for mental health lost their only psychiatrist and could not find a replacement for 11 months, and difficult children medications were causeing problems instead ofbeing helpful, but there was noone at the facility to do anything about it. School got weirded out, nervous to have a child ill enough to actually end up in a psychiatric hospital so they became frightened of difficult child. So it was only once difficult child was in 8th graade that she began to have school anxiety. I also worked the nite shift, thru it all, and got very very little sleep ever..tending to everything. By then I had fallen very very very ill myself and spent time as a quadriplegic. How weird, but.I was then HOME 24-7 and it resulted in difficult child haveing me right here all the time. Even tho I could not really DO anything....it affected her. Becuz I was so ill, I was awarded soc sec disability on my first application....and I wound up staying home since then. After difficult child was in psychiatric hospital, school got much worse, BUT our county mental health people got this stupid idea difficult child was "fine" and they stopped all therapies in home help, psychiatrists and tdocs. From a website for parents of bipolar children I met some people online that conected us to our last psychiatrist for difficult child who was instrumental in helping difficult child become more stable, more relaxed, and this saintly psychiatrist also gave me and difficult child her email and difficult child emailed this psychiatrist ALL the time.....and difficult child did much better haveing someone there on other end of keyboard.....and becuz of my disability I no longer had to figure out how I was going to keep our roof over our head or feed us. I no longer hd to panic wondering who would be with my kids etc, becuz finding anyone to watch difficult child for even oone hour was prolly the most difficult problem of all. And, truth be told very often, anyone who was here under the premise of "helping" caused more trouble than any help they ever gave. In the very end, in hindsight, it turns out, in my opinion.....seemed the more help we had, the less helpful it was, and the more problems it caused. Also in hindsight, my easy child bless her heart was a huge help- unfair to her.....and yes of course it has had an effect on the kind of person she is now.....she is quite independant, and strong with strong ideas and she backs up her ideas with her effort. Poor kid, she wound up haveing to do more than I am happy with. Truth is we had to accept a life that was not anything like "normal" For a long time we lived under heavy scrutiny and got help from county and state and had to answer for every brathe we took, everything was analyzed, in exchange for help just working and going to school etc. And between all the appts and etc our housework fell further and further out of priority. Family meals were eaten out of lunchboxes in mentalhealth care facilities waiting areas, or in car raceing from one appointment to another..... AND I was very familiar with human resources office for my employer, with me often getting leave under "Family Medical Leave Act" Sometimes I took it in small increments of an hour a week.sometimes I took consecutive blocks of time all at once, it depended on how my difficult child and husband were doing. A side note....I used to hate mental illness in a child becuz it seemed so few people had a clue what life with a seriously mentally ill child was like. Then my husband got so sick.and I found out people also do not understand what it is like to have a dependant spouse with serious mental illness...(catatonia alternateing with psychosis, and rages) and THEN I got to find out what it is like to have your own body entirely fail you completely. I think THATS when I really truly began to understand betetr about my difficult child and her brain that did not work like other peoples. LOL- well, then my son injurd his eye and whoo boy me and him wound up at Ronald McDonald House for the better part of almost 2 years....and there my son was with a very non mental illness disability......and I found out for absolute certain------people just do not get it about disabilities at all, no matter if it is mental or physical. No matter if it is you, a child or a spouse. The IEPs and childcare issues etc did not go any better with a physically disabled child than they went with a mentally disabled child. And trying to find work and work it around your own, your spouses or your childrens disabilities can be very very difficult indeed. Bosses do not understand, coworkers do not understand.....Hmmm.I worked 2 jobs full time, sometimes 3 jobs, ever since I was 12 years old and turned out to the streets. I never used a single sick day and never had a vacation day at all from age 12 until I had difficult child. That changed EVERYTHING. I know that working a different shift than your partner is hard, no fun, and it just stinks. But for us, that was the best thing we could come up with when my husband was still well enough to be able to take care of the kids. When I no longer had him to back me up, it became helter skelter hit or miss and it is just by the grace of G-d that we never had any worse tragedy related to the mad scramable to keep things going regarding childcare. Seems no matter HOW carefully we made plans, no matter who the plans were with, usually county respite, or tdocs etc.....it fell apart more than it ever fell into place. But we limped thru it. Now difficult child will be 20 in a couple weeks. easy child is now 18...and my son is a very independant 13. difficult child STILL needs someone with her at all times......becuz of how sick easy child has been with her preg, she never gets left alone. Son is technically too young to leave alone. husband is sick enough he cannot be left alone, but.....all their needs are different enough, they can be left now with each other. difficult child panics when alone, she cannot even be in a room alone....but aside from that she does OK. easy child is weak from her nonstop illness.....and is prone to falls, right now..so we walk beside her most of the time if she is up and about. Her judgement is very good re any issues here at home. She is intelligent and capable. Son of course is young, but smart, has good common sense, the only issue is that he is homeschooled now and by law must be with me or husband dureing school hours. husband is NOT capable, but no longer rages, but would passive suicide or whatever if noone took him to bathroom or told him to eat his meal or whatever. BUT the kids have grown up with him being that way and handle it as a matter of routine. They could do it in their sleep. So, the whole family now has grown enough and somehow everyones needs are different enough between them all, things now do work out. THat awful horrible crazy time did not last forever. with time we all grew in certain ways and adjusted and somehow just found ways to make Life work out. Hm, I am reading this and it sounds worse than what it is now..but the time a few years ago? Whew, it WAS a horrid nitemare time.....but at the time, I was so immersed in dealing with it, I had very little time or energy to SEE it for how bad it was kind of? We really had so few choices. Our Life is what it is.it was how it was.....I did what I had to do, somehow. None of it was at all even close to anything I ever dreamed, imagined or planned. Not even close. I think we lived on a wing a song and a prayer. I do remember we were given one choice.one I could not accept---give the kids up-----becuz difficult child was dififcult.......instead it built my resolve to just try harder to rise up and meet the challenges.BUT i also am VERY aware a lot of things were just good luck that we made it thru somehow. Ironically most of our crisises were dureing the times when the professionals were in charge of my kids. Looking back, I tend to think THEY made more mistakes than *I* did. THe other day I was going to post something about how sometimes more "help" does not turn out to be helpful. Kinda like "less is more" dureing that horrible time, difficult child had 1-1 daily, and girls social group for social skills in another town 3 times weekly, and another girls peer pressure group twice a week, in yet another town, and she had siblings group with her siblings once a week, and parent-child sessions once a week, and we had marriage therapy once a week and family whole family once a week, and she saw her psychiatrist weekly an hour away....plus me and husband were in day treatment, plus each child had their own mentor once a week, and we had a behavioral therapist working in our house and a WRAP facilittor in our home, and my girls each had a "Big" from big brothers big sisters once a week, plus me and husband each had our own psychiatrist and therapist, tdocs weekly, psychiatrists monthly....plus all 3 kids were in tae kwon do for 7 years and all 3 kids were in scouts, band and chorus.... AND difficult child had a neurologist in chicago once a month, and son had 4 neurologists all in chicago----and husband had appts at VA an hour and a half away 4 times per week. I had a calender the size of a whole wall here, and we kept everything on it and had to consult that calender for time to use restroom. It was a horrible complicated time. and the end result, in my opinion-my kids never did learn how to think for themself, how to do anything without a professional first saying ok do it. I balked strongly against all this stuff going on, it sure was NO way to live. BUT .....our school and CPS in their infinite wisdom required us to keep this insane schedule.....and I was working full time the whole time. SOmetimes I had to race into a bathroom at work to talk on cell to coordinate things at home..my job did not permit phone calls or cell phones...heck, I was taking care of patients. BUT part of that type of job was I could choose to work overnite.or weekends, or holidays......and that helped. SOmehow someway you prolly WILL figure out how to make things work out for you. And someday you might look back in amazement and awe at yourself. Good luck. I'm not sure there is any one right answer. [/QUOTE]
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