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| The Cafe - 'TC' So? Your daughter wants her belly pierced? Your cat keeps using the couch as a litter box? Your husband taped the Hockey game over your wedding video? Your neighbor has a gnome collection and it makes you mad? Pour yourself a cup of coffee and come on in to The Café! Talk amongst yourselves...discuss, question, reply, or respond to many subjects! |
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It seems you aren't happy your family is self supporting, you want more. My family is self supporting and I don't dwell on handouts or entitlements or whatever you are wanting. No one can help you to understand until you are open to realizing how good your family actually has it because you seem devoted and your husband works hard. I know the prevailing attidtue, in general today, is give me, give me, give me, but your family is on the right track, there are values and responsibilities. dl |
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If your son is 8 years old, he should be eligible for a ton of school-oriented assistance from your city or county, which has nothing to do with your income. Does he have an IEP? If he's at school, why not get a job during those hours? If nothing else, a lot of schools hire aides during the day, which would give you the same hours. McDonald's, WalMart, 24 hour stores also might be options for you.
__________________ Reading is Fundamental. |
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There are many in your boat. It seems that people dont make enough to cover the medical costs etc but make just a little too much to qualify for help. You might want to check around with different organizations to help (Lions club for instance or organizations that are related to the disability. Bring with you a paper from a Dr stating that your son needs round the clock care and/or bring him with you when applying along with any incured bills. Hope it works out for you... |
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"If your son is 8 years old, he should be eligible for a ton of school-oriented assistance from your city or county, which has nothing to do with your income. Does he have an IEP? If he's at school, why not get a job during those hours? If nothing else, a lot of schools hire aides during the day, which would give you the same hours. McDonald's, WalMart, 24 hour stores also might be options for you. " Trbl, I agree with you... Work opposite shifts, work when he is at school, work from home... Dont ever say you cant get a job... There are ways around it... you may not want to work....
__________________ Be careful what you wish for..... |
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That is ridiculous. Did you file an appeal or is it strictly based on income? And people it is HARD to get any job much less one where they allow you to say "I'm only working these hours because I have to be there for my son" Really? There are 500 people waiting to fill the job and they are willing to work any hours we tell them so bye see you later. And for some reason people think it's easy to get a job at McDonald's or somewhere like that. Maybe if you're a teenager. They don't want middle aged women working there simply because they know the very second we can do something better we are out of there. They don't want people like Marilyn and myself. I would be happy to work there or anywhere right now for that matter. If where you live gives people jobs and allows them to pick the hours tell me where it is I'm packing up and moving there.
__________________ Eat Chinese food you'll be hungry in half an hour. Eat Italian food you'll be hungry in two weeks! |
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However, from the experience that a family member had: They attempted to mainstream their child in public school so that they could get some assistance. Their child for all intent and purposes was being babysat by an aide in public school. He had to be tube fed, he had to diaper changes, he was and is wheelchair bound. (He had equine encephalitis when he was 6 months old---which is pretty much the age he stopped progressing mentally). Was that fair to the public school? I don't think so. So, yes, she and her husband divorced just so the child could qualify for assistance. They did all the things described here (working from home, working opposite shifts, etc.) but the only way to get the child the care and the respite care THEY needed was to divorce. So, all of you that think this can be solved w/ some scheduling "work"---get a grip! I don't think that is always realistic and shouldn't be necessary all the time! We've got people on the public dole who drive newer cars, eat better and live better than the working stiffs. I get exactly what the OP is saying--exactly! and to insinuate that the OP doesn't want to work? When was the last time any of you provided round-the-clock care for a child or parent who couldn't care for themselves? 8 hours of that is usually equivalent to what most of us do in 16 hours. I'm all for personal responsibility. I'm all for earning the things you get. I'm all for working within the system. It doesn't mean that the system isn't wrong sometimes. Unfortunately, it's the only system we have at this time.
__________________ "Never explain — your friends do not need it and your enemies will not believe you anyway. —Elbert Hubbard" |
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Mkjn1999, maybe you can check with your state and see if there is some type of program that you guys qualify for? Idaho has a program called Katie Beckett, and it's specifically for children who have a disability, but don't qualify based on parent's income. Check to see if there is something like that in your state. |
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| In my experience, the people working at McDonald's, WalMart, grocery stores, etc., in the middle of the day are middle-aged (or older) men and women because the teenagers, for the most part, are in school and unavailable.
__________________ Reading is Fundamental. |
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truble2301, I see lots of non-teen people working places during the day and late at night. I don't go to fast food places or WM but Target, Home Depot, Espresso Barts (ie: Starbucks),Bed Bath and Beyond...stuff like that...I don't see a lot of teens unless it's between 3-8. Before or after that (or weekends), you might see more but generally, they are 30-65 years old.
__________________ Proud to say I haven't shopped at a Wal-Mart since Sept 2003 |
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__________________ Reading is Fundamental. |
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It's easier to hire a younger person at a lower rate of pay simply because they typically don't have as much experience. It doesn't alter the fact that many of you seem to think that 1) the OP just doesn't want to work, 2) that the OP is capable of performing work after providing round-the-clock care regardless of whether it's at home or outside the home (again how many of you have provided round-the-clock care?) Further; without knowing the exact extent of what "round-the-clock" care consists of none of us should sit in judgment. there are other factors as well--is this the OPs only child? What kind of work does the other parent do? (is it manual labor? does it require out of town trips? If it's shift work, what kind of shifts--8 hr, 12 hr, etc.) I think that many here jumped on the OP because they think she's wanting something for nothing. I tend to think the OP is frustrated because she needs assistance and can't receive it, but sees others who do receive it.
__________________ "Never explain — your friends do not need it and your enemies will not believe you anyway. —Elbert Hubbard" |
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"It doesn't alter the fact that many of you seem to think that 1) the OP just doesn't want to work, 2) that the OP is capable of performing work after providing round-the-clock care regardless of whether it's at home or outside the home (again how many of you have provided round-the-clock care?)" Yes I am one of those who feels that the OP is making excuses and does not want to work. My ex husband and I worked opposite shifts. I worked 7 pm to 7 am 4 nights a week and 11pm to 7 am one night a week. He worked 8-5. When I got home, I didnt get to go to sleep right away, I had children at home to take care of... I learned to make do with the little naps that I could take while they were napping... Her response to Nightowlrn about "not understanding it" leads me to believe that she doesnt want to understand it. It is simple, you do what you have to provide for your children... and disabled or not if that means getting a job then do it...
__________________ Be careful what you wish for..... |
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She has two choices: make more money to pay for the care or make less to get state assistance. Given that her son is young enough to be in the school system, I don't know why he's not there. ETA: I hope OP comes back and give us more info. Some of us actually are trying to make useful suggestions, even if our way of helping doesn't suit some others . . .
__________________ Reading is Fundamental. |
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I don't think the OP is necessarily looking for money to help- I think she is trying to get services for her son. Her son may be in school but in a lot of areas- the schools do not necessarily provide the services her son requires. If her son is medically fragile, it may be unsafe for him to be there. Maybe the school can't or won't handle him. Have you ever tried to keep a job when the school is constantly calling you to come pick your kid up? I am fortunate that my MIL is my boss and I can just leave if I have to. And she's right it is a 24 hour job. Her husband may work 12-15 hour days.
__________________ Mom to Katie 1/95 and Sara 5/97 |
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Don't be quick to jump to the conclusion that the son can be in school. I had a cousin who was not able to go to school & needed round the clock care. There was no way both my aunt & uncle could work (even opposite shifts). My aunt stayed home with him. The care that he needed was on level with a newborn. He couldn't do anything for himself (literally). By the time he was 6, he needed to be suctioned every hour to remove mucus,etc. from his throat. He was barely able to swallow. He needed a feeding tube & needed to be fed every 2 - 3 hours. My aunt tried working part time, but ended up so exhausted she ended up in the hospital. They tried a bunch of different daycare programs set up for this type of situation, but the quality of care was awful. For example, Chris was suddenly having diaper rash problems, he was 4 at the time. He hadn't had those in years because of my aunt's care. She surprised the daycare with an unannounced visit. He was sitting in a poopy diaper. It had been on him so long it was dried to him. They finally found quality part time care for him, but he was 12 by that time. Judy |
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The assistance system we have isn't fair. And it isn't fair to expect a public school system to take on the responsibilities of caring for a child who gets nothing from public school except being babysat. A public school is for educating children--NOT providing NURSING CARE! I truly believe that some people have no concept of what 24 hour care entails. It's more labor intensive than caring for a newborn--and with a newborn you have the expectation that the child will grow and become more independent. With a disabled child the care required only gets more and more. It's things like this that goes to show, women can be very catty and instead of supporting another woman will tear her down.
__________________ "Never explain — your friends do not need it and your enemies will not believe you anyway. —Elbert Hubbard" |
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"It's more labor intensive than caring for a newborn--and with a newborn you have the expectation that the child will grow and become more independent." EXACTLY, and that makes it harder... as anyone with kids know, the kids stop taking naps.. So you live on even less sleep.. However once again it is doing what needs to be done... Im sorry but even if her husband works 12 hour days, she could still work for a few hours at night when he comes home... Perhaps I was raised differently... if your child needs something you work to provide it for them... you dont ask anyone to take care of your child... Sick or not...
__________________ Be careful what you wish for..... |
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Or should you ever NOT be able to provide for your children. I, personnally, have been extremely fortunate to have healthy children. We have struggled at times to take care of the basic necessities. We were fortunate in that we had a huge support network to help when we had crisis--both w/ money and time. However, having seen the struggles that my family member has gone through w/ their son--I can honestly say that the assistance system is far from being a good working model. I am appalled and saddened that some people here think it's ok for a mother to want to know why some get help, but she can't (from the govt.) Why don't some of you volunteer to provide 24 hour care for a disabled child or parent? Let's see how much work you can do, when you aren't feeding them, changing them, taking them to Drs. appts. Let's see how distraught and completely at your wits end you get after one week! It's not about wanting something for nothing. It really isn't! ![]() ETA: it seems that some people forget compassion. We would all do well to remember "There but for the Grace of God, Go I". One catastrophic illness or accident, and any one of us could be in the same boat as the OP.
__________________ "Never explain — your friends do not need it and your enemies will not believe you anyway. —Elbert Hubbard" |
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Sleep deprivation causes the brain to work at a less than optimal level. Anyone with a newborn or someone in the house who has been sick and needed care or anyone who just has a sleep deficit should be able to understand how difficult it is to remember your own name in that state, let alone try to do hold down a job. Yeah, I know - most everyone *has* functioned for periods of time in that state. But imagine years and years of living like that, with no hope of things ever easing up. Try not sleeping for a mere 48 hrs and then share how efficient you might be at any task. Families with members who have a disability, especially a child, live an existence that *outsiders* can only imagine, and those imaginings won't come close to reality. Besides the day to day care issues of someone who is disabled, there's all the case management that parents have to do, absolutely neccessary (whether your kid is disabled or not), and unbelievably mammoth in scope. With healthy kids we keep up with their MD appts, school stuff, recreational and social stuff, nutrition, etc. It's much more complicated and time consuming to do those same things when your child is disabled. And doing it in a constant state of duress and exhaustion? Good luck on that score. I've worked with many families who don't have the social resources (no family or friends in the area, new to the area, etc.) to fall back on for respite. Also families who have been bankrupted by a kid's special needs who came to the county for whatever scrap of assistance (and they usually asked for very minor help - things like 1 day of respite very couple of months,an ed advocate for IEPs and reviews, financial help to pay a utility bill because the untilities $ went to pay the co-pays for a kid's meds, etc. What would any of us do if we ran out of resources and had hungry kids or kids who needed medical help or anything else essential? What would we do first: rob, cheat, & commit other crimes or turn to state and/or fed aid? In the *olden* days churchs, community chests, & communities helped those who needed assistance. Today our state and federal gov'ts have taken on that role. Yes, there are still churches and other organizations to carry on the tradition, but the majority of assistance comes from the gov't. And, IMNSHO, it stinks. This is a subject that requires someone else's moccasins on our feet to be able to truly understand. |
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Stop it dannic it has nothing to do with working hard she IS working hard perhaps harder than a Mom with a mainstream child who raises the child and works outside the home.
__________________ Eat Chinese food you'll be hungry in half an hour. Eat Italian food you'll be hungry in two weeks! |
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__________________ Reading is Fundamental. |
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Just saying.
__________________ "Never explain — your friends do not need it and your enemies will not believe you anyway. —Elbert Hubbard" |
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The OP has said her disabled son requires 24 hour care. How many of you here have actually CARED for a disabled child round the clock? There's a huge difference between working your eight hour day, taking your child to ball practice, coming home and making dinner, washing clothes, bathing the child, helping with homework and physically tending to a disabled child 24 hours, every hour of every day. Do any of you realize how mentally and physically exhausting that is? It's very obvious most of you don't because of your catty remarks to her. How about showing a little compassion instead. OP, I hope you find the help you need. Maybe you can call some of the services in your area and they might can give you some ideas. It sounds like you need a break, even if it's just a day or two a week. Perhaps there's a center that your child can attend even if it's only a half day... at least you would get some sort of a break. Please let us know more about your son's condition (if you care to share) and perhaps some of these catty posters may actually be able to let you in on their 'wisdom' since they seem to know so much. |
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I had a severely disabled child for three and a half years. She passed away on New Years Eve. Until you have had to take care of a disabled child 24 hours a day on little to no sleep don't pass judgment. Get a job opposite hours? And get fired when you have to take days off for the numerous Dr appts. Or when the child has to be admitted to the hospital for a week here and there. Or for the therapy appts. Or for the school appts. Having a disabled child is a full time job.
__________________ Sometimes realize, I could only be as good as you'll let me Are you woman enough to be my man? |
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I don't get why the OP and others believe she has a 24/7 hour job and her husband doesn't. Does he work 7 days a week? Doubtful. Is the child not in school? Doubtful. If that is her choice, that's fine. But, often women take on the 24/7 care taker role and the man slides by. That is fine if that is going well. But, apparently it isn't because she is here asking for advice. I suppose we could support them getting a divorce. Although after the State factors in child support and what she could make if she did work, that might not be much. I can't imagine she isn't aware of charity agencies since her child is 8. No one is dismissing the burden of caring for a special needs child. But, reality is what it is. GL. I hope you find the answer you are looking for. Last edited by nightowlrn; 09-22-2009 at 12:00 AM. |
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Classic. Just classic. |
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What on earth prompted that statement??? mom2 is obviously expressing compassion for the OP's situation, not throwing her under the bus. There is public assistance and then there is public assistance. There are those who legitimately need it and those who use it as a way of life unnecessarily. Anyone who doesn't understand the difference needs more help than can be found hanging out hurling darts on a message board. |
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OP ..you might need to look at your problem from a different angle. IF you think it is most important to be there for your child than you will just have to learn to manage on 1 income. Since you stated that your DH "has a job that basicaly payes the rent" maybe try to find a cheaper place to live. Look at your expenses every month see what you can cut down or cut out. Look for creative ways to make extra money. Babysitting ..maybe not a very young child, but people do need someone for after school hours. Housecleaning, walking pets, etc on your DH day off. You or your DH doing handyman type of jobs for neighbors. If you make crafts, blankets, etc sell them at a craft shows. There are ways of making it work. |
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OP, if I recall correctly, haven't you had 'trouble' with your husband being too generous with others? Are you the one who posted some time back that you have an autistic son who needs dental care, but you have never taken him to the dentist... but your husband had given several hundred dollars to a fund at work for the dental bill of another person's child? If so... and I don't mean this in an ugly way... that may be your problem. If he is making too much money for you to qualify for assistance, and has enough to donate to worthy causes... I assume that if he were to buckle down and focus on managing the money he does make on behalf of the needs of his family that you could find some relief somewhere. It makes sense that the government won't help a family that makes enough money to pay their own bills, but the government can't control whether or not you spend your income wisely, kwim? If I remember correctly, you did not want him giving that money away, so I don't know how much control you have over this problem... but if your husband makes enough to give so much away, the government will have the expectation that that family money needs spend supporting the family. |
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Im sorry but I will stand by my original statements. Unless her husband works 7 days a week 24 hours a day, then there are times available when she would be able to go out and work... Or work from home... Sorry.... And if you son is Autistic, there are schools for him...
__________________ Be careful what you wish for..... |
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Just feel that this kind of went off on the wrong track and would like to offer the OP some support. I have a special needs child as well and I don't work. Yes, I could get a job but after being up all night with him I need that time he is in school to get the things that need to be done around the house and to get back to a point where I'm ready for him to get off the bus and take on whatevers going to happen that afternoon/evening/night. We would be more comfortable if I worked, but my family would not be better for it. Don't let people get you down who have no idea what you go through. I know its exhausting and the system is frustrating. Hang in there!
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I just dunno where I stand on all this. Our son has medical issues. Our insurance didn't cover the type of medical care he needed. We were behind on our mortgage payments and the bank was threatening to foreclose. We applied to our state's medicaid program to pick up the medical bills that our insurance didn't cover (excluded expenses, co-pays, deductible and our 20%) and maybe help with the meds. We were denied because my DH made too much $$ and we already had private insurance. Some good fortunate came our way and we were able take care of things ourselves. During that time we applied for SSI; I think that's what it's called. It's for disability. We were approved. Our son would get a $5XX check a month and a medicaid supplement. DH and I decided not to go through with the SSI. It felt so good to be independent and not need the gov't. Besides that, we didn't want to label our son disabled. Once a kid has that label then it's really hard ot remove it if/when things change. And our son has many Dr appts, meds 3x/day, has to have his emergency meds on him at all times, etc. Kind of like a diabetic. I tseemed wrong to let him play football and soccer on one hand and recieve disability $$ on the other, KWIM. But, my child doesn't need 24/7 physical care. He can dress, feed himself. He has a job, is in Beta, football, and maintains at least a 3.5 GPA. I realize I'm not comparing apples to apples. Maybe if the gov't would help her son for a limited time (say 9-12 months) she could make some changes that would enable her family to be more independant when the assitance ran out. I dont know what the answer is, but I do feel for the OP. I'm all about pro-life but I feel the need to keep being supportive long after it isn't a fetus anymore. As for the Dad being able to care for the 8 y/o while she works I guess it would be doable. But what about the OP's other 2 children. Maybe the OP is giving care tot he 8 y/o and the Dad is interacting with the OP's other 2 children. I don't want to assume he comes home and vegs out in front of the TV while the OP is majorly multitasking. Selena
__________________ God is not Santa Claus |
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As a parent of child who requires 24 hour care, let me say, things don't work the same as "regular" children. There are many times that even when the child is at school, that I am required to go and be with the child, bring the child home, and take him to several appt's. The job market is fierce right now, and anyone looking for employment is going to be hard pressed to find it anywhere, when you can only work certain hours, need several days off for appt's, and have to be able to leave at a moments notice quite a bit. I know several parents in support groups that I'm the member of that have had to legally seperate, and in some cases divorce to get the assitance that they need.
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" I know several parents in support groups that I'm the member of that have had to legally seperate, and in some cases divorce to get the assitance that they need. " That is really sad... Instead of fighting to change the system, they are playing it... In my opinion that makes them no better then the ones who lie and cheat to get on welfare...
__________________ Be careful what you wish for..... |
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There are times when people do evertyhing they can, and it's just not enough........ |
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A woman who is already stretched for time and money and other resources would have to have the motivation of Joan of Arc and could expect to be burned at the stake also. Get real Dannic none of us is perfect but for some reason you have this burning desire to judge people and to look for holes in their story and dig up former posts to prove your point. If I were you I would try to concentrate on why I have this burning desire to make others look bad. For God's sake have some compassion and if you can't dredge up an iota of that try using the common sense God gave a rock and look at your comments with an objective eye and try to figure out how to make yourself happier with your own life instead of by putting others down. Bullies and people with inferiority complexes do that. I don't understand how any of you can criticize this woman. Have you cared for a special needs child? Even as a job or a volunteer or a respite provider? This is the day that officially some of you sicken me.
__________________ Eat Chinese food you'll be hungry in half an hour. Eat Italian food you'll be hungry in two weeks! |
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| First, yes, so get off your high horse. Second, most people are trying to offer suggestions, not criticize, but maybe if OP would come back and give some details of her situation, people could be more helpful. She dropped in with her problem, and appears not to have been back since.
__________________ Reading is Fundamental. |
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![]() good grief! Let ye without sin cast the first stone I highly doubt that a couple separating is along the same lines as liars and cheaters.
__________________ "Never explain — your friends do not need it and your enemies will not believe you anyway. —Elbert Hubbard" |
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I can't even imagine how physically/mentally/emotionally/financially grueling it must be to deal with a disabled/handicapped child |
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