How do you raise children?

[scape1973]

Guess its one ofbthose bad days, did too much yesterday, have pots and sjogrens, officially diagnosed finally, and other nerve issues apparently.  I have six children, 3&4 yr  old a couple others that ex has custody though i really should but health leaves me unable. Current husband opposite of narcissistic abisive control freak ex, but some kind of aspergers im not sure what but manages even less than housework than I do, and skin peels off hands due to much hand sanitizer yet two foot pile of food wrapers, boxes, cans near his bed, would be higher if i didnt throw them. Heworks a very part time job minimum wage. Took two yrs for him to get that after i could no longer support us health too  bad. Ex makes six figures. An older daughter and boyfriend are coming for christmas, my House was basically taken over by mice and was staying upstairs, now up here.  Its out of control.  So i loaded up on unprescribed prednisone, knowing risks but this is just disgusting, only way i can do anything without arms and legs just giving out though pots doesnt let me remain upright anyway. I pulled out carpet, painted walls, a few hours of this with constant breaks still leads to 2-3 days without doing anything.  the floor still needs to be disinfected and though i thought mice were gone, though i kept asking husband to reset traps he didnt and heard one by my nightstand.  Saw evidence this mornimg. I spent most of today trying to clean clutter and piles of trash and then bawling my head off because I just cant. 
I dont know what to do anymore, my little girls cant live like this and though even if i could afford a housekeeper i couldnt imagine letting one in without a lot more done first.  Im hoping for ivig in coming months, eventually ssdi though not gonna allow for much like that.  Has anyone ever heard of medicaid helping with any kind of household help?  My husband hasnt been diagnosed, trying to get anywhere with that was a nightmare, partly bc getting him to follow through with appointments is vwry difficult, not as much bc he is unwilling just i dont know...even being up and awake before 1pm is a big day.  Which means im on my own when girls are in school next year.  Hopefully things will be better but i just dont know what to do anymore.  Sorry i dont know how much is a question, venting, or just out of people to talk to...lost most friends after divorce, no family close.  Thanks for listening to my whining when no different or worse than any of your problems

[Joe S.]

Some agencies in MN provide, a nurse, a care giver, and a house keeper to those that meet financial requirements. It sounds like you would meet that. Please check to see if there is similar programs in your area.

[araminta]

So sorry to hear about your problems.   It's difficult to comment on the situation without knowing a lot more about it, and I appreciate that your husband might have Aspergers, but 'm wondering how he can hold down a job but not be capable of putting his rubbish into a bin.   Perhaps put a big bin beside his bed if that's where he puts his rubbish.   Tackling the rubbish will be a very good start to tackling the mice.

I'm also wondering if the older daughter who is coming for Xmas might be able to give you a bit of help, either this week or some other time?

I was in a very stressful situation five years ago after my father had a stroke and I had to go and live with my disabled mother for six weeks while I sorted out care for her etc.   (Actually that happened over Xmas too, and here in the UK in was a very cold winter with heavy snow, which made our hospital visits to my father in another town particularly difficult).   Anyway I was getting panicky about everything I had to do, but talking on the phone to my husband helped me a lot.   He suggested that I list all the things I needed to do (believe me there were loads), and try putting them into some kind of order, and tackling them one at a time.   As I did this and started to tick things off I started to feel a bit more in control, and eventually I got through it.

Perhaps doing the same thing might help you?   I really do sympathise and remember how fraught I was myself when things felt chaotic, but it was possible for  me to work my way through them a step at a time.

[quietdynamics]

Less is More.
The less 'stuff' your have to take care of .. things.. the more time you have for life. And your children.

With a chronic disease this becomes even more true.

When I was alone with my two children and working full time (+plus grad school)
I learned this and that it was important to teach my children to be 'self achievers' even at an early age. Darling granddaughter came to live us at age 3.5. 
Put baskets in her room .. one for socks, panties.. she learned she could dress herself (yes, I was in the room).  "Family works together" gave her spray bottle with water to wash glass doors. (Not allowed to clean bathroom, etc.) Put unbreakable bowls, plastic glasses in lower cabinet so she could get her own (not try to climb when older).
Toy boxes under bed.. you want them .. you put them away before I vacuum or they go into trash. Her decision.  Does not take much work to train them and the effect is lasting.
Age 4 she was folding her laundry (goal was not perfection) next to me.
Now she is 7 and adults, teachers, etc comment on her maturity, problem solving abilities, etc.

Children love to be a "part" of the family.. and they love being helpers and 'being told what a great job they do'.  I use a timer to cue her and myself too.  She starts getting ready for bed @ 8:00 or 8:15 and that absolutely includes putting out next days school clothes. HER alarm clock goes off at 7:30 and she dresses, oatmeal/fruit breakfast,   puts her own dishes in sink, brush teeth and I do her hair,and then has down time as bus does not come until 8:40. Oven timer goes off @ 8:30 so we all know time to get ready to go out the door. I make her lunch when I tidy from dinner.. if she liked dinner.. yeah she gets the same for lunch the next day. If not while kitchen is messy I make something then .. so I am cleaning once.
We never have to shout, raise voices or get frantic. This is more the Montessori method of child learning.
She comes home and takes OFF her school clothes and puts on her play clothes.
Kids where not digging ditches at school.. the clothes do not need to be washed unless there was an accident, spill, etc. And clothes are interchangeable (pink leggings are so cute, but, not practical..she has a pink bow for her hair.lol).. they are expensive.

Kudos to your husband on his job. Aspergers being on the Austism Spectrum (did they just take Aspergers off.. Think I read that?), each person exhibits differing traits. I worked with Aspergers students from high to low functioning and just as with any individual adaptations can be make in behavior. Can his OCD about hands be broadened to kitchen and bathroom.. so family benefits 
Buy him a pair of gloves and then let him have at it? 
If it is about germs.. let him know what he is breathing in with the trash and mice dropping.

I could not lift a jug of milk from refrigerator or more than a year, among other things. Cleaning kitchen floor took me 2-3 days...due to symptoms. I searched for an adapatation and bought an All Terrain Floor/Carpet cleaner.

Honestly there are patients going through chemo that do not get in home aid.
So not feeling SJS or POTS is high on the list.

[warmwaters]

The advice about getting your young children involved is a good one. It will make a dent in some of the tasks in the house.

One of the very hard things about having low energy is that you feel like the things you can't get done are somehow your fault. But I got worried for you when you said you took some prednisone and muscled your way through a lot of hard work. And that even if you could get someone to help clean, you'd have to get the house cleaner first.  I worried, because I recognized a pattern that I sometimes have of "I'm just going to do it!!!!", and then I pay for that choice with having to stay in bed for a week.

I realize that there may be times when you have to do things, but try to be careful, for your own sake.

I did check about getting help at home, and in CA, where I live, you may be entitled to services based on your income and the nature of your disability.  It was called In Home Supportive Services.

Another thought I had is if you are affiliated with a group that does charity work, like a church or social organization, maybe you could get some help.  Wish I could wave a magic wand and make this better!

[angeldancer]

I feel for you and hear your plea.  I understand having someone in the home with aspergers.  I have had to deal with sjogrens and cancer and a wonderful son that had great strengths but cleaning was not one of them.  His stuff including food would pile up on the floor around the bed.  He was a great help picking me up and taking me to the bathroom and going to get me some soup (his strength) cleaning was and still is his weakness.  His mind doesn't kick in that messiness causes germs for me.  So we had to come up with a plan.  I throw everything away the day of.  If he doesn't want to have his things thrown in the trash they must make it to the bin outdoors.  If the bin is full and not cleaned out it becomes trash.

Another thing which was said already...less is more.  My son only has 3 pairs of pants and two dress pants.  I limit his shirts to 7 so that he can realize the shirts are dirty.  My son works two jobs as a stunt man which he loves.  And when he is done with those he will probably go back and be a character at disneyland.  He shows up to work early and does exactly what is expected on him.  I count joy and make that a comfort that he is an awesome worker. 

Kids helping can turn into a great wonderful lifelong game for them.  Use singing and joy and they will find comfort in cleaning that makes the family so happy.  Behavior Modification should be used on the kids and our husband.  It works but it must be consistent.

I think many of us here have suffered so greatly from illnesses for so many years and trying to adapt and make sure we can truly take one day at a time takes a little energy that is hard to spare.  I know I go quiet now to get through major flares and I know I have to.  I don't want cancer coming back so even if it means I go to soup kitchens to eat or whatever (I don't have to now because my son's jobs pay well) I will go.

Another thing is to try to laugh with your children everyday.  Laughter takes energy but it sends positive hormones throughout your body that helps you fight.  Also try to eat as healthy as possible.  Finding the foods that brings energy to your body.  Look out for the foods that drag you down.  I had to learn that gluten does not agree with my body.  I'm not allergic in a way that you can see but I get beyond sluggish and fatigue from those foods.  Who would have thought?

We are here for you and we can only help with suggestions that has helped us along the way.  I found a church Pastored by Rick Warren that wrote Purpose Driven Life to help me with food and they came to help me clean up my house.  What a blessing!  Don't give up an never lose hope.  Something is out there for you.

Peace and blessings,
Angeldancer

[Carolina]

Hi scape,

How do I, did I, raise children?   I did the best I could, which, of course, wasn't good enough, or the right way, or whatever.

Some thoughts:

You really won't get much help from a 3 and 4 year old, and honestly it doesn't sound like you're in a good place for teaching them how to help, right now. 

For me, making a list helps.  Then prioritizing things on the list and crossing out things I would like to have done, but aren't necessary.

Mice are a problem, piles in and of themselves aren't.  But if the piles bring mice, well, set some mouse traps and go from there.

You have a very LARGE child, AKA your husband.  But you cannot change him and you mostly have to work around him, I guess.

Your health comes first.  Without health and strength you won't get anything done, anyway.

Random consumption of Prednisone, (unprescribed?  How do you EVEN get that?) is a very bad idea, scape. 

You need a counselor to help you with all of this, I think.  I know it is a great effort to organize things, to make calls, to deal with agencies.   But you are going to have to do this, I'm afraid.

The first thing is to get help in your community, and into your house.

Keep us posted,

Hugs,  Elaine

[Scottietottie]

Hi 

I raised 4 children but didn't get a dx till the youngest was about 14. I felt ill after I had the second. I decided that clean clothes, clean dishes and fresh food was important but that other housework wasn't really. If the kids wanted to live in a tidy house - they had to tidy it. If they didn't - I didn't really care.

I Persuaded them to do activities that I could watch - rather than getting involved in and if parents of friends of theirs ever asked them to go hill walking or camping with them - I encouraged them to take up the offer.

There were a lot of things I would like to have done but it was just too difficult.

However - they have all turned out OK. Better than OK even. They are strong, independent adults. All graduated from university - because they chose to go there in the first place. All are in work and two are now parents themselves.

Kids are amazingly resilient. Never measure how you do things as a family against other families. Your time is more important than housework. Just love them and they will be fine. At least you will be able to tell your kids WHY you are tired and sore.

Take care - Scottie 

[scape1973]

Thank you for your replies, i started this a while ago, but my phone died and wasnt up to starting again (am typing from phone).  Trying to understand my husband's reasoning, it just doesnt work.  At the same time I know he tries, it is just something in him that just doesnt jive with the way the rest of the world seems to process things.  And after 20+ years of some pretty awful treatment and consequenses for things I could not seem to do no matter hoow hard I tried, and with no explation for it (until now, of course...I had no idea why Id actually start bawlig while doing dishes....other than i just felt 'bad'.  Obviously depression, right?  But that didnt feel right, meds didnt help.  Now I know its P.O.T.S., Sjogren's, hughes syndrome, etc.etc.etc...also, how working, house, school, etc was so much harder then it seemed it should have been.  So I was treated as lazy, not caring or trying etc.  And I see myself treating my husband this way over and over and fwel awful for it.  He has lost too much to be doing this on purpose.  I lived wkh a narcissist, and know some of them assume everyone else should be taking care of them etc (though my ex was 'high functioning' and has a good job) but my current husband just doesnt fit this.  I see him trying to do what ask.  He makes comments I cant relate to, like wonderig why we evem have to have fingernails, he wishes he cou;d have his removed, as his are apparently extremely sensitive..  id feel worse without fingernails I would think, as they protect them, makes no sense to me, so I guess that's my point, obviously  the way he or his body or whatever perceives stimuli is different then mine.  Anyway, sorry, explaining this to myself I guess. How he can be so obsessively hygenic in some areas but so....not..in others is beyond me. But I managed to get the disgusting mouse mess and other messes cleaned up, did have a few days I couldnt move, overdid it which I knew I would but it was bad.  Id got the prednisone online, yes it was stupid, never would recommend, have no more and wont get more, but at the same time glad i got accomplished what i did, and think it possibly may have helped prevent some further nerve damage over the last 2-3 years while i was not beimg taken seriously by Drs.  Also as i couldnt get on top of the mice even after cleaning massively, I got two cats, kept some traps in places they couldnt reach, have seen no sign of them since (no mice caught or food disap[earing off traps) Thank goodness.     I was approved for IVIG and staet Monday.  I was really surprised abt that,  thought for sure it would be denied andt have to be appealed, at least.  So I'm extremely hopeful but at the same time realistic.  The more I read, the more unsure I am about what can and cant actually be helped, so whatever happens happens. 

I have had many comments here stick in my head; I know the more giilt and frustration I feel, the more I tend to take out on my husband, blamimg him for the house.  And have been involvig my 3-4 yr old oh actually 4 and 5 now, they are great and do help.  Ive made a little job chart thing and will implement soon.  Sorry i always feel im all over the plAce  while writing...of courae my little girls interrupting every two seconds doesnt help, but they are sweet...I think my house is pulled together enough that we can manage with just little jobs or gig jobs broken into smaller steps.  Before, it was too much, and I never could have caught up.
Thanks!  Appreciate the commemts!
Amy