i'm totally spent, i need some advice :)

[Jena]

i'm hoping everyone's day went well today.

I had beyond a rough one with difficult child. I need to ask you guys for some advice. I've got the medication in place as many of you know, that was a rough one yet with everyone's help I did it. I have the therapist in place as well.

I make constant and continuous accommodations here at home due to difficult child. Things such as her leaving with her dad for weekend visitation on saturday afternoons, as opposed to friday night. So, now she's only gone for basically 24 hours or about that. I have also left my job, as many of you have also due to her increasing needs. I now have found a pt job that pays pretty low yet will allow me to still be her main caregiver. I've done little things like for example i do the laundry on friday's now to avoid her being upset and melting down at me doing it on weekend. We have to go to laundromat. I've also have strict routine in place every friday night which is her shows, a snack she picks out, etc. Night is all about her. I do the cleaning during week now that I"m not working to avoid any chores on weekend. Today I made the mistake in thinking i could go food shopping.

Well, she was so manicky today it was unreal. I broke down and brought her to movies gave up on buying food with her and spent money i didn't have because she was melting down and it was pouring rain and I was looking for quick fix. We couldn't do outdoor actiivity due to weather. I than came home after fighting with her all morning to get dressed, not argue with her sister, stop making a mess everywhere, etc. i decide ok i'll go out to costco now. I left easy child in charge. I'm literally right down the road.

I return to find sand art playdough all smudged into living room carpet. I come back to find birthday, easter cards, you name it all over our place. difficult child went through draws and pulled out holiday cards from years past and put them all over. easy child obviously did nothing, sat on phone and labtop didn't clean fridge out for me like i asked her to.

So, I'm sitting here totally spent right now i thought i'd cry yet i'm not at that point. I'm soaken wet from rain outside and carrying bags up in dark, and now it's onto dinner and whatever else difficult child wants to do tongiht. I'm exhausted.

What provisions do you guys make at home around difficult child's?? I mean life requires work there are chores, and food shopping, and normal things that have to happen. Once I begin working these things wil have to lap onto the weekends again. difficult child some weekends just can't handle it.

I just feel like this job is always so very hard and thought provoking. Our place is a mess now, no point of cleaning during week she's trashed it totally. Carpets ruined. All I want to do is climb into bed at this point.

Than the amt of stuff i bought at costco set her off and excited her so much boom the irritability thing again and fighting with easy child over the biscuits that i told them they could do together for me to put in oven to go with cooked chicken i got.

Is this how it is i just have to run every single day around her needs, desires, moods, manic behaviors and stay on guard 24/7?

Don't get me wrong I know others handle so much more yet I guess this is my limit today. Thanksgiving set her off also. boyfriend and I have noticed a pattern around thanksgiving time she begins to truly fly off the handle. I should be grateful the sleep is still occuring. Also I forgot to add she never wants to leave the house. So, it usually takes hours of prompting and fighting to get her out.

ok thanks, i'm open to any ideas at all or maybe even ideas on how everyone else makes it through weekends??

 

[Jena]

ok i am calmer now

difficult child was racing so badly she looked at me and said i can feel my heartbeat through my neck it's so strong!

She's starting to finally wind down now a bit, i gave her medication about 2 hours ago.

So, truly what other provisions can i make for her that are doable? I want to be very good at this, at handling her. Yet by the time I get truly good she'll be an adult!!!

What I'm wondering is are we supposed to take everything out (any stressers) for them is that truly reality? Is that going to prepare them for the real world someday?? I often have such confusion over this.

 

[susiestar]

Jen,

Have you ever considered that by running things around difficult child's needs/wants you are keeping her from learning that life happens and it doesn't make concessions for you? It would be a long, hard road at this point, but it might be worthwhile to slowly add some things that you HAVE to do during "her" time that are not about her.

Life does NOT revolve around difficult children. Sometimes, in the search for calm and peace, we give in too much to their wishes and needs. THis ROBS them of the ability to learn to adapt. When the things you do to accomodate her just drive her to demand more and more, well, then you are not helping her.

Even if you start with a set time, say 7 to 8, or even 7 to 7:30 that the tv will NOT be on HER show, but on YOURS, then she will start learning that other people matter just as much as she does.

I KNOW you did much of this to avoid medication, and because it is so hard to watch your child deal with a disease. But part of that disease is learning to manage it.

If we had made the entire family eat on thank you's diet, for example, he would never have learned that he has to say NO to milk, or to oranges or strawberries. He would just assume that everyone will avoid those because he can't have them.

Even with Wiz at home, he NEVER got all the TV time to himself. Sharing is part of living in a family. Even part of living in the WORLD.

Do you see what I mean? It IS more stressful to teach your child these lessons of not having everything revolve around them. Especially after such a period of giving in as you have done. But it makes for stronger adults, in my opinion.

I could be totally wrong, but I wanted to tell you what I was seeing.

I AM sorry that things are so stressful. You DO need to teach her that MOM is a person with needs too. OTherwise YOU are going to end up in the psychiatric hospital with a breakdown.

Hugs,

Susie

 

[Andy]

To remove all stressors for our child(ren) would sure make their lives easier but at the same time make us into personal attendants.

Our role as parents is to make sure they are ready for indepent living.

When a situation arises we can: 1. Put the problem into their laps. 2. Walk them through the problem or 3. Solve the problem for them.

#3 should only be used when # 1 and #2 are absolutely not options. Like calling in a refill for medications, finding transportation to everyplace, ect.

#1. We are taking a gamble that they will find the strength within them to use the tools we make sure they have access to to solve the problem. However, the end result if it works out is so huge - self esteem builder. This way requires tons of patience and endurance on our part. Also lots of lip biting - if you make it their problem, you have to let them figure it out even if trial and error hurt them.

#2. This takes a lot of time. We are there each step of the way encouraging them. They have to find the tools with our clues. It can be frustrating as they will most likely not take advantage of the biggest and best tools available right in front of their eyes.

#3. Meets their needs but does not teach them how.

We get the fun job of figuring out which situation calls for which method. Results are so slow in coming it can be discouraging. We live in an instant gratification country and as we earn for that fast to come positive results, it will not happen. These things take time and mostly longer than we think.

Each child is different at each day of his or her life. What is right for one will not always work for the next in the same situation.

So, looks like I am not much help as it is back in your lap. But know that we know you love your child(ren) and will always choose what looks best at the moment. We respect your choices and support your needs.

 

[Jena]

Susie - Wow. I read what you wrote and I'm still processing as I write this. The wheels will turn on your words i think for a bit. I like thought provoking stuff. very cool.

No one's ever said that to me before, except my Mom. With whom i'm going to see tomorrow and i hate how she handles difficult child totally. She always pushes her. ugh! I may do the things I mentioned yet at the same time I hold difficult child liable for her actions all the time. I have heard others post here regarding not giving time out's etc. i don't believe in that. I'm big with the consequence meeting the action sort of thing. how else will she learn? That would just make her weaker i think for my child. She'll begin to think that she has a "get out of jail free card" due to her illness. So, it seems like such a fine line or a dance to an extent.

How do we as parents define what things to change and what things not to due to their illness? I heard you even speak of provisions for holiday time and all. See my confusion? I'm really confused. Ok you totally need to pm me lol.

I want to be the best parent i can be to her i truly do. i work at it very hard, I don't always do such a good job. Today for example I finally blew. I make her do all her hw each night regardless of battle, I do not make "special" meals for her, she eats what other kids eat or no snack, yet if she is in a manic mode it's difficult to handle her really really hard. She becomes volatile, nasty, calls me names, has raised her hand to me a few times. I need someone to teach me how to handle that and still go through daily drudgery. I don't want to up her medication each time she does this. Like for example she is still up, it's almost 11:30 medication was given at 7. Usually within 3 1/2 hours she'sdown for count. Shes totally manic today. Wow, so i feel guilty when I make anything about me to be very honest with you. I won't lie. I took fifteen min. bath tonight I had to because i'm also getting sick i had to defuse i left her with easy child in front of t.v. she than proceeded to spill nail polish remover and nail polish all over dining room table. i really have to thikn long and hard on what your saying. Ppl's views on this matter tend to differ greatly.

Andy

Hi! Dont' be silly i totally get what your saying and you are always helpful. There is no magic answer to any of this. I just at times have to truly take a deep breath adn say wow i truly have a children wtih a serious mental illness. I often forget. It kinda takes my breath away. Almost like i'm in a dream.

 

[TerryJ2]

Susie and Adrianne have some GREAT ideas.

We've done many things to both accommodate and deliberately NOT accommodate, most of which were suggested by our child psychologist. I'm not very clever when it comes to outsmarting my kids--I was a rule follower as a kid--so it's been helpful to have a pro with-ideas, and also with-a sense of humor.
I totally agree that building up the child from a little bit to a lot of tolerance is the way to go. They've got to learn to live in the real world. They've got to learn to deal with-their anxiety. They've got to learn to cope.

I always wondered HOW my difficult child would learn to cope. I thought it would be something I would tell him. But it gradually happened as I followed the psychiatric's advice.
For example, difficult child would ask where we were going when we'd run errands. (I apologize in advance to all of you who have heard this story b4! LOL!) If I changed one tiny thing, he'd have a fit. I mean trashing my entire car. Broken CDs, broken console, broken door handles, screaming, spitting, pulling my hair through signal lights, you name it, all because I went to the P.O. b4 the grocery store when I said I was going to do it the other way around.
So the psychiatric suggested to deliberately reverse or rearrange the order of the errands to show difficult child that I was in charge, and that he would survive if things were not "just so."
Yes, difficult child tantrumed and raged.
Yes, I went on medications. Heh heh. So did he. Sigh.
And most importantly, yes, it worked! Every day, it works a bit more.

The main thing was the sense of empowerment it gave me. Instead of not knowing why he was flying off the handle, I was causing a meltdown. Yup. Causing it. And a lightbulb went off in my head. Oh, if I can cause a meltdown, I can prevent one. And so can he.
(Sometimes these psychs actually know what they're doing, LOL!)
And that concept gave me the emotional strength to continue the "errands." (Of course, this also consisted of dry runs, where I really didn't need to go to the store and planned his meltdown so I could yank him out immediately to teach him that he could not get away with-that. You've got to go through the motions.)

Some days I give him leeway and other days I bite his head off. He lives with-me. I am woman. Hear me roar. I can roar as loudly as he can. Of course, it's practiced and measured roaring. Flying off the cuff is not going to help anyone, and it leaves you exhausted.
My difficult child is now 11 and he occasionally complains when I run errands, but after one or two signal lights, he stops and just lives with-it. I never, ever thought we'd get to this point.
It can be done.
It's never too late.

Sometimes these kids can do so much damage, you wonder why you bother at all. My son has ruined so many things in our house, I can't even begin to list them. Okay, twist my arm--I'll tell you that we finally replaced the off-white carpeting last yr (bad color for kids and dogs) with-blue--and within 2 days, difficult child had spilled bleach on it! (Hey, what's $2,500 down the tubes?)
I didn't yell at him... because he was carrying bleach to his rm to spray his mattress because he still wet the bed. It's his job to take care of his rm. Lord knows, these kids are either too uncoordinated or too manic to do things "right" so it's one of those things where I am just thankful he was doing what he was supposed to do with-o complaining.

I cooled off for 2 wks, and finally came up with-the idea to buy Rit dye at the fabric store and color the spots. It worked!!! It doesn't match perfectly but it's a 90% match. And difficult child is still spraying his mattress ...

Luck and hugs.

 

[Shari]

Jenn,
***
I haven't read thru all the replies, so forgive me, but...wee difficult child's IHBT gave us some exercises to make stores 'do-able' with difficult child. It took a lot of time, but it eventually has paid off. (I couldn't take him in any store) And now, I do the bulk of the shopping without him, but if I have to take him, I lessen the list to what I HAVE to have to get thru several days, and we can usually make it thru a short shopping trip.
***
This is what we did....It started by making a list. In the beginning, it had one item on it for me, and one for him, and we went every single day (which meant a lot of times I kinda had to make up what I "needed") He saw me make the list, I gave him a couple of choices for his item (when we started with the grocery store, it was usually a choice between a pack of gum or a chocolate milk). He picked and it went on the list. Then we went to the store and bought the things on the list (don't even stop to browse at something else). A helper is good to go along on these trips, too, cause no matter what difficult child does, you need to buy both items on the list, so if he had a complete meltdown, its easier to have a second body with you. (this sounds CRAZY now that I'm writing it down....OMG my life was really like this???? Yes, it was! Wow, we've made progress!)
***
When he could handle the 2 items, we increase the list to 3 items - 2 for me, 1 for difficult child. Again, I only bought what was on that piece of paper without even pausing for anything else, and we still went every day. And so on and so forth. When we got up to 3 or 4 items, I started mixing it up - one day, I only put HIS item on the list, then another day, I only put MY item on the list. And eventually, we could go to the grocery store.
***
I remember the first time I bought 2 bags of groceries with difficult child in tow. It was nothing short of a miracle and I got home and called the grandparents to brag. lol
***
When we tackled the grocery store, we moved on to the dollar store (its all we have in town). I haven't tackled Walmart or anything that big just cause he's not exposed to that often, but the grocery store and the dollar have helped when I do have to take him to walmart. And eventually, we will have to tackle walmart. I still do the bulk of the shopping on my lunch hour, without him, but if I have to, he is able to tag along most of the time now.

 

[Jena]

Terry

I never thought of doing that, switching up the day, the chores. I think that's a great idea.

I can totally see your point with all of it. Yes $2,500 carpeting yikes I would of def flipped lol. It does take time and different approaches indeed. I am going to use your idea of switching up the chores though, i think that's great.

Shari - It's been a long road with-you in regards to stores and alot of effort on your part also. That's kinda cool you set goals, started off small and increased. I have to be honest my difficult child isn't that bad all the time it depends on her mood. There are days she can handle it, and I can with her lol. Than there are days she is way too hyped and excited. When she's able to handle it, worst thing that will happen is she'll jump all over the place and ask for about 3 to 5 things each area we pass and get mad when i say no.

Yet this weekend when that manic sort of behavior kicked up i said no way am i handling this in the middle of costco. I would of need to lock myself up when we returned and get a time out myself!!!

 

[ML]

Great thread and wonderful suggestions. It isn't easy, Jen, for sure. But you are asking the right questions and the input is perfect. It's a daily balancing act. I could just spend days reading the responses here and feel so much more hope and empowerment by opening up to the collective experience and wisdom here. Take care, ML