Do you make provisions at home for your difficult child?

[Jena]

hi

So i had discussed this on another thread today that I had started. Susie said some very interesting words to me. It's under "I'm totally spent, need advise thread".

So, my question is do you make provisions at home for your difficult child due to their illness, or do you try to handle things as you would with your other children if you have other children because you want your child to adapt to what the "real" world will be like?

This has always been a thought of mine in the back of my head. Something I struggle with internally quite alot. I've almost always lived my life par for the course, until 3 years ago when it all changed drastically. All her behaviors became worse and it was time to start the evaluation. run around with doctors and than all my fears were confirmed.

So, anyway i'd love to hear your thoughts on this.

Thanks!!! "this has no meaning, I just have ppl now and i thought she was cute with her little credit card lol!!! "

 

[JJJ]

Both. I try and hold them as accountable as I think they can handle. Violence is a non-starter and gets punished no matter what. Chores, etc depend on how stable they are. I can usually tell if they are using all their energy to hold it together and I try to calm them down rather than put more pressure on them. Yes, the real adult world will be tougher but mine are still young and we have plenty of time to increase the pressure once we increase their coping skills.

 

[Marguerite]

I often use the example of how you would handle the situation if the child were blind. If a blind child broke a glass because it was too easily knocked off the edge of the table, you wouldn't punish. But if the blind child picked up the glass and deliberately threw it to break it - yes, you would punish that.

Similarly, you shouldn't punish a blind child for failing to copy accurately form the blackboard at school, and yet a lot of schools have this contradictory attitude to difficult children at school, punishing them for things they cannot control or change.

However, that doesn't mean you leave the blind child to do no schoolwork or to not have the chance to learn - no, you put strategies in pace to help the child access learning by taking their disability into account and making necessary modifications.

A friend of mine, about my age, was born physically disabled and believed to also be mentally handicapped. At school she says she was "left", no allowances were made but no demands were made either. She had a lot of absences due to health issues and barely got a 1st grade education by the time she left when she would have been about 8 or 9. She has since been married, raised two boys, finally divorced her abusive husband and despite increasing disability now lives alone with a lot of government support services which she has organised for herself). She recently wrong a book which I edited and published for her and in the process taught herself how to use a computer. She still drives a car although it's getting increasingly difficult as she deteriorates physically.

We need to be realistic in our expectations, to be supportive of our childrens' needs but to also hold them to expectations within their capabilities in order for them to grow and develop further.

Marg

 

[Fran]

I think it is going to be different for each difficult child depending on their level of ability.

As my son got into his teens and was stable emotionally, I used his peer groups as a ruler. I tried to keep him as close to the peer group as he was able to handle. I made accomodations along the way at each and every step. He got almost all the experiences his peers got but I'm not sure he got why.

I absolutely make provisions for him to function. There are simple rules. Safety nets are in place and we understand that he does not get our world. He manages the best he can.

It would be cruel to expect someone with different abilities to manage like one fully capable(Marg's example of a person without sight) On the other hand you wouldn't want to not have any expectation. Think Helen Keller. I have been looking for our Anne Sullivan forever, to unlock the door to understanding in my difficult child.

Hang in there. The learning process for difficult child's is varied depending on the difficult child.

 

[Andy]

I like what JJJ said about increasing pressure after we increase coping skills. Maybe that is the key for difficult child's. We need to be assured they have coping skills. Many times that is what we are helping them build. They need to be able to cope before they can have challenges given to do on their own.

I believe that we need to walk our difficult child's through as much as possible every single detail of a situation. There are opportunities for learning if even in a tiny detail of a large process.

It gets very wearing at times as we don't often see progress on their part. At what point do we determine that they just are not going to understand this particular situation and just do it ourselves. Then, do we reintroduce the challenge at a later date when they are older?

Coping skills is the first tool needed for independent living. It is also one of the most difficult to "teach". Before giving the child any type of a challenge, we need to assess the level of coping skills needed to complete the challenge.

 

[Jena]

thanks everyone for the feedback as always. I just thought it was an interesting topic and alot of times views can be different as well.

I think I may be entering into a different phase of this now. I was in "crisis" mode for a while spent years with different medications couldn't get her functional. Now I'm seeing the light of day somewhat, yet those old behaviors or "manic" episodes boy do they sure rear their head as if they were never gone at all.

I am also wondering when your child is "manic" how do you handle them? What techniques do you use to calm or sooth?? I try not to engage when she is like that. Yet often when she is in that mode is when she is her "most" difficult. She will name call, go to hit me, etc. I've been using time out's i'm lucky because their still working. It gives her time away from me to cool off somewhat. Yet she's getting alot bigger and alot older and i'll be honest i'm a bit nervous.

I have an almost 16 year old that would never of acted the way in which difficult child acts now. So, I think wow what will 6 more years bring?? Can't project I know yet my mind does go there.

 

[totoro]

I just yesterday had to take away all of K's sewing stuff, crochet knitting etc.
It all started with a latch hook rug and pot holder maker. These were to be here starting points for something she wanted to do.
We had long discussions about how we start with something small. Baby steps and move forward from there.
So I bought her the easiest, latch hook rug. And Pot holder makers. She started off OK, a year ago... she has kind of slipped downhill, but has never moved forward. I sit with her and we work on it and try.
She wants to knit. She can't until she can get the basics.
So yesterday she broke down, freaked out. I let her and then had the talk. I would not let her just jump into pool without lessons first... all of that kind of talk.
I told her I was taking away all of her knitting, crocheting, sewing kits that people have bought her until she can show me that is able to start working on the other 2 things. I took the latch hook and the pot holder thing away as well. Just for awhile. I told her I thought it was causing her too much stress.

So maybe with a easy child child I would have pushed more and said , "You asked for these, you have to try harder and finish them" or just pushed harder.

But I can see mentally and physically right now that she is not capable. I will help her when she is.
Our schedule does run according mostly to our kids. K has to eat about 5ish. She needs to or it causes her to have issues.
We have to get her ready for bed around 6:30 so then when and if she has a breakdown we will not be fighting her on getting dressed, brushing teeth, taking medications. We have learned to time things when she is doing well, knowing that she starts to fall apart at certain times.

Right now, she woke very early,manic, talking to her fairies, so we need to keep her calm. So we can not do anything today.
To bad... that is life. She needs to be kept calm, she is sitting in a laundry basket with her stuffed animal and blanket watching a very little kid show.
(I get to watch football though!)
But I kind of knew we would have a hard day today, for us, K can only do one thing on one day. Yesterday we went and saw "Ralphs World" Live in Concert... K danced the whole time and he lets the kids get up on stage at the end and she danced right with him!!! Then we got something to eat and then we walked over to a play area across the street for a whole 20 minutes.
The concert was 1 hour.
So that was enough to wreck her for today. So our provisions today are to help her. Yes that may be give in to some of her emotions.
But like I have said before, K is not manipulative.
She is just one messed up little kid....
I would do anything to lift this kid up and I will do anything to hold her close.

 

[Jena]

T

Hi, I totally understand what you mean in regards to K. Each child is also different and their needs and personalities underneath all their varying diagnosis's are different. I hope you didnt' misunderstand what I had written.

That's cool the show, she must of loved it and difficult child also sits in a little box with her stuffed animal infront of t.v. when she's feeling very shakey shall we say. I think it makes them feel safe and comforted.

See, our difference between our difficult child's is mine is manipulative and can be quite volatile at times and verbally hurtful and truly attack. She doesn't view me as a person alot of the time I think, yet I don't think i ever viewed my mom as a person either when I was a kid lol.

I'm just trying to get better at this. I try harder with each new day. What aggrivates me also is I get no support whatsoever from my ex or my family. boyfriend is my only support and all of my friends here.

I hope your feeling better. I think I caught what you had lol.

 

[trinityroyal]

The way I see it, it's my job as difficult child's parent to teach him how to live in the world. Which means, behaving as appropriately as he can, adhering to society's rules and laws as best he can, etc. Where necessary, I make accommodations for him, but I still expect him to follow the rules.

For example:
difficult child has terrible trouble with bathing. He'll forget to do it, or he'll forget a critical step (like putting soap or body wash on the cloth), or whatever. So he needs help to remember what to do. Washing his body is not a choice, it's a requirement. HOW he washes his body...there's a lot of leeway. Bath vs shower. Soap vs. body wash. Cloth vs scrub puff or washing glove...etc. These are all things that I can change to accommodate difficult child's needs while making sure he's behaving appropriately.

Like Toto was saying, sometimes all bets are off. The day after a big activity, I sort of expect a meltdown, and schedule a downtime day to allow for difficult child to recover, and to deal with whatever behaviour results.

Just ruminating a bit. Hope this all makes sense.
Trinity

 

[TerryJ2]

Great thread. I can't add anything except, "Ditto."

 

[totoro]

Jen I wasn't saying you were doing anything wrong. Or incorrectly, I was just telling you how our house works when K is unstable.
Who knows how much worse one's child is when unstable, who knows how much more one can take or will tolorate? Know what I mean?? Some days I know I can push K harder, some I know I can't.
As our first psychiatrist explained it and believes firmly, as do I, Bipolar is a spectrum.
All of our children are at different levels and different extremes as far as functioning.
Age, delays, medications all of these things come into play as well.
I can only tell what I do and what helps with K and N. The things that work with K do not absolutely work with N. Hardly ever!
But N has more Autism like symptoms than K.
So all we can do is bounce ideas off of each other.
Years ago I never though I would Not be giving time outs!!! But they are just not good for K. She takes time to focus, anywhere she wants. She takes time to re-group. She can do it with one of us or without.
One of the big things for BiPolar (BP) kids is they have a huge fear that they will be abandoned. SO sometimes for some, shutting them in a room makes things worse. It does for K.
Just thoughts... If it all worked we could all read one book and not need this place!!! LOL

 

[Wiped Out]

We definitely make provisions for our difficult child, wouldn't really be fair to him not to. That doesn't mean we don't have expectations or that he doesn't have responsibilities. We also try to challenge him because we want him to challenge himself.

I really like Marg's example of the blind child.

 

[timer lady]

The tweedles expectations at home(s) have increased however, neither myself nor foster mum push to the point of meltdown.

Knowing some of kt & wm's triggers have helped calm our family down. As maturity has set in for kt, we have upped the ante, so to speak. She's responsible for the list of chores on the dry erase board each day when she gets home. After that her time is her own except for helping with dinner & dinner clean up.

However, if she's had a "bad" day at school, I back down. Not because I fear a meltdown but because by this time of the day the child is frayed & she's more inclined to go into a dissociative state.

I still am working on getting kt out into that big bad world (wm's getting the same at group home) & that will continue. I have a good feeling just how far both of my children will go at this point.

 

[Jena]

Totoro

Hi no i totally understand what you were saying. I was hoping I wasnt being too harsh. I think we;re both being overly nice lol.

I can def see how different things work for different kids. I just wanted to get some input to see how everyone else works it. when do you push, when do you pull back, how do you tell the difference???
I saw that you wrote that BiPolar (BP) kids greatest fear or one of is abondenment? Where does that stem from, their level of insecurity overall? I have always had this feeling with difficult child, she clings to me at all times almost. anyway i'm glad you found ways to cope and help her cope that works.

Trinity - I totally understand what you mean with example you gave the shower/bath thing. Makes perfect sense, I tend to do that as well.

Marg - great example. I actually had difficult child watch Helen Keller with me a few weeks ago she was blown away by her abilities.

I think one of my main questions and for some reason no doctor can ever seem to "help me" is what do i do when she rages? Now granted her rages are by far not that bad. Yet as i think i stated she's getting bigger and i'm getting concerned. doctor's never tell me anything by the way on how to handle her, etc. even therapist they all kinda stink.

 

[maril]

I am also wondering when your child is "manic" how do you handle them? What techniques do you use to calm or sooth?? I try not to engage when she is like that. Yet often when she is in that mode is when she is her "most" difficult. She will name call, go to hit me, etc. I've been using time out's i'm lucky because their still working. It gives her time away from me to cool off somewhat. Yet she's getting alot bigger and alot older and i'll be honest i'm a bit nervous.

I have an almost 16 year old that would never of acted the way in which difficult child acts now. So, I think wow what will 6 more years bring?? Can't project I know yet my mind does go there.

Good idea to try to not engage. It is so hard to do that sometimes, though!

This past Friday, difficult child was incredibly upset and was talking about hurting himself and felt like hurting "someone," very agitated, and started to cry (school problems, girlfriend troubles, plus it was late in the day -- maybe medicine rebound). I talked through it with him instead of freaking (over a period of time, he has verbalized wanting to hurt himself or others and had tried one time to hurt himself, so I am on edge), which worked to a certain extent. He did not end up acting out or do anything rash. After talking to him about what was bothering him and encouraging him, I also reminded him that I was going to babysit a 9-month-old cousin's child that evening and wanted assurance that he was going to take steps to calm down. I wanted him to realize there were other people to be considered.

I, too, have another child; she is the oldest and we did not experience the same challenges as with difficult child. Our experiences with her were bumps in the road; our experiences with difficult child have been bumps, potholes, and ditches!!! I am not picking on him, as I know he is a completely different person than her, and I love them both very much.

by the way, there are some great responses above to your original post.

 

[Jena]

Marilynne yes I did get some great responses i knew i would......

I"m sorry i missed a few of you guys!!

JJJ - Yes I agree as they get older than we can increase and change our approach and raise the bar a little depending on where they are at that point.

Fran - Hi, I hope your celebration this weekend was a good one. I'm def hanging in. I just want to make good choices pertaining to her. I'm not always sure what i'm doing, and i kinda wing it lol!! Think Helen Keller no doubt!! Remember that part in the movie where she refuses to sit at the table? Wow all I could think is been there done that!!

My family, my mom impaticular spoke of my difficult child yesterday at our visit while she was down on the beach with her pop pop. My Mom said (and she never compliments me ever!!) your doing a good job. I'Tourette's Syndrome difficult you can't raise her as you did easy child, takes totally different approach. She also said she hates how "detached" my daughter has almost always been. I'Tourette's Syndrome like sh'es there yet not al the way.

All we can do is keep talking, listening to eachother keep working at it.

Andy - hi yes i can totally see your point. Yet I try to often weigh which things to "walk" her through and which one's she needs to learn on her own. Her insecurities are so huge that it hinders her from experiencing the wonder of life. I am her security blanket. I push when I feel i can, and i hold her close when i feel she needs it for comfort. I often wonder if the day will come that she will be able to live on her own.

Anyway thanks

if i missed anyone else i'm sorry!!!

 

[SearchingForRainbows]

Jennifer,

This is a great thread!!! I really don't have much to add to what the others have already said right now but want to thank you for posting this. Lots of great advice here. WFEN

 

[Shari]

I'm looking for the answer to how to handle rages, too. In fact, I asked the in-home last week. But when redirection doesn't work, and it escalates, I don't think there is an answer as to how...

Personal protection (for self, difficult child, and others around), then protection of property, and whatever means necessary, starting with the least restrictive, is how we go about it. Sometimes it means literally getting him on the floor and sitting on him. In-home didn't have any more to offer - you just survive the onslaught and try to work thru the details later. Hopefully you'll learn something that can prevent the next one.

 

[totoro]

We just brought a video to our therapist of one of K's oh so pleasant rages when she starts to get manic and dissociate. We go over all the triggers all of the BS that we already know and it is frustrating. Because you want answers right now.
But what our therapist is trying to do is build a connection and a history and understand K. She is in it hopefully for the long term.
Sometimes the doctor's just have an answer.
Our therapist is trying to make a long term plan she is trying to figure it out and get to know K.
This is going to take a long time.
K never even raged with her last therapist in Idaho until after a year! And then watch out she ripped that womans office apart!!!
So while I get frustrated at times and want answers, I do respect what this therapist is doing. She spends time with K. Then every other week she spends time with just husband and I, making plans and going over everything.

Some days I am so cynical, why am I doing OK? Yet I have 4 people in my family who have committed suicide or died from Mental Illness. 2 others who are still struggling hard and this doesn't count my kids....
So who knows what the answers are?

 

[Jena]

hi,

So very true to all of what all of you wrote in response to this thread. I also have suicides on both our families side (ex and I both), long historys' of mental illness both diagnosed and undiagnosed.

It is difficult yet it truly sounds like alot of you have great doctor's on board. For that I am happy yet I am wondering how you found them. Our dr is basically our medication guy he doesn't take the time to get or understand anything. That falls all on me, the layperson and Mom. I have tried as many of you know so very many doctor's yet as soon as I get into their office their already looking at their watch for when it will end.

I do not feel confident in teh team I currently have working with me. The only person I am confident in at this point is myself, difficult child, and the benefits from all of you here.

Rages are hard to understand, their sudden alot of time with out forewarning and fueled by so much we do not understand in their minds. It is difficult at the parent to watch these things occur in our children and not always know the right answers. Yet us continuously trying to love them thru it, learn from them, past, makes us the most important part of their future. I think we should all be commended on our strength, our resiliency and tenancity. I really can't say enough good things about me and all of us!! LOL

I think the particular diagnosis of bipolar is so truly unknown, often misdiagnosed, often overlooked and misunderstood. To me it often feels as though I am on a roller coaster with no seatbelt.

Ok well maybe we should start a new thread just entitled rages, what do you do what works for you? and we can go bk to that time and time again to see what other parents are doing, what's working and see if that helps us. Something more specifically geared kinda post. I dont' wanna do it because i'm filling up the boards lately lol.

thanks you guys love the input your all so insightful and smart.