How does one not take it so personal?

wakeupcall

Well-Known Member
difficult child is no better, really, than he was when he was four. He's fourteen now. He doesn't hit, but he pushes me. He picks, picks, picks as if I were his sister (I know you know what that's like..) He NEVER comes home when we say.....anywhere from fifteen minutes late to an hour. I try not to make it a big deal for the fifteen, but the hour late is another story. He won't eat what we cook. He gorges through the night. He makes "scenes" in the yard with me which embarrasses me to no end.

He still poops in his pants and I have to go around with gloves on picking up tiny droplets of it, then clean the carpet, most every day. He plugs the toilet with toilet paper causing it to overflow, despite repeated telling him to flush more than once while he's trying to go.

He's sleeping very little. Sometimes falling asleep about 3:00 AM after he's kept me awake most of the night and I have to go to work. He's very, very disrespectful to me (and his father, but it's worse to me). He NEVER can speak to me in a civil tone.....it's always hateful and defensive (at least it isn't offensive. lol).

I'm just soooo tired. No, there's no respite. We have no family except 80 year old parents and he's run off all my friends. I wouldn't push him on one of my friends anyway. We try to go out for dinner for an hour and a half, but there's no tellin' what he does while we're gone. Often he rummages through all our drawers and closets, the car, the garage, etc. Have no idea what he thinks he's looking for and he says, "nuthin'".

Sorry, Board Members, just needed to vent.
 
J

joneshockey

Guest
Wakeupcall ~
I am sorry that hear that things are so rough for you right now... Have you discussed these concerns with your son's psychiatristtor? It seems like there should be something else they can do to help you & him. I can totally symathize with you on the fact that friends that you have known for YEARS can not seem to understand or choose not to understand your struggles with your child. I am currently in the same boat as you in this reguards - ALL of my close friends that I have known since high school have backed away from our family too, due to my 3 1/2 yr old son. I just wanted to let you know that ALL of us on this website are here to support you!
 
wakeupcall.

Good you vented. Sounds like a nightmare (i can say that with the empathy of experience).

I'm having the same sleep issues with gfg13. His sleep schedule is completely dysregulated. I've tried aromatherapy etc etc. His eating is dysregulated too.

Regarding the tiny droplets of stool -- that sounds like it could be encopresis. My gfg13 had encopresis. We had the same experience with the toilet plugging with paper. Is there a big stool in there too? (sorry if too much information) He may be stooling around a larger blockage of stool which forms in kids who are prone to constipation and also anxious kids who hold it in. It's essentially a medical condition with some psychological underpinnings. I found some good info on enco and my son was able to recover quicker than most.

Regarding medications -- our older ds is very anxious and in Residential Treatment Center (RTC) they haven't hesitated to put him on Ativan. Just our experience. I know it doesn't sound good to put a kid on a benzo. Our older son's anxiety is crippling to him.

As for nighttime -- maybe your guy needs something to zonk him out. Nothing works for our gfg13. Seroquel did, but he got tardive dyskinesia which he recovered from over about a month. What a nightmare that was. gfg13 has a lot of klonopin left over from a prescription he had for school this past year, which we didn't use because it zonked him out. If it gets too bad, too many nights in a row, I will give him a klonopin (as I said they are prescribed for him).

I feel like a heretic mentioning (not suggesting) benzos for these kids. But honestly sometimes I think we underestimate their anxiety. It is crippling to them. I'm going to ask the psychiatrist to try buspar for gfg13.

Also last week I ordered him a weighted blanket. Both out kids love those. Our first one is shot. Also I ordered a good beanbag chair. I know he will like the deep pressure of both of these. he used to slam himself into walls to get organized when he was younger. Maybe I should try that lol.

LMK if you want more info on encopresis. I found a message board with some adult "survivors" of enco and they had good tips.

We don't have any respite either -- no family able to help. Our older son as I said is in Residential Treatment Center (RTC) now.

You are the first person ever (that I've read) to mention the rummaging through the entire house, car garage, closets. Our older son does this -- trashing the house in the process, no boundaries whatsoever. Do you have any idea what's up with this? I don't. Anyway we put a lock (fingerprint) on our garage and key locks to our bedroom and various other rooms. That made things easier because along with the emotional chaos, the chaos in the physical environment is just too much to handle. Sometimes I think that's the worst part of all.

Hugs hugs hugs
 

susiestar

Roll With It
The ONLY way you are EVER going to keep him out of things is to install locks. Physical problem, he gets into everything. Physical solution, make sure nothing opens except what is his . It is NOT fun, but it is the ONLY way you are going to change things. Until he no longer enters your home. He recognizes no boundaries and this isn't likely to change. Only when he starts getting into legal trouble will there be any change possible, and you are not likely to get any help from the police if he gets into your stuff.

Even put locks on the kitchen door if you have one and one every cabinet and the fridge. I would use a big chain around the fridge. Keep your keys on your person at all times.

What does the doctor say about the encopresis? What happens if you add benefiber or miralax to something he likes to drink? Doesn't matter much what it is, keep it locked up and make it a special treat. If he won't drink it out of a glass, use a funnel to put it in the drink container for each portion just before you give it to him. You may need to pour out a few ounces of the drink to make up for the medicine, but it may work.

What about depends? Are you willing to battle to get him to wear them until he is more responsible about the toilet and the issues? I don't know if it would help or make things worse, so you might want to think about that before you bring it up.

Has he seen a doctor and been scoped to make sure there is no physical problem behind the encopresis? In some people the nerves don't develop or work properly so teh person has little control over this. It is unlikely, but for some kids the whole cleanout and scope issue helps because they never want to go through it again. If it has been a while since he was examined and scoped it should probably be done again. Make sure you ask the doctor about miralax and fiber.

You may have to ration the toilet paper and keep towels, washcloths, all paper products, etc... out of the bathroom. Lock them up in the bathroom cabinets if you need to. When he has to use the bathroom he has to ask for toilet paper. If there is anything else he can stuff into the toilet, he will. So if you have a half bath it would be the perfect place to have open for his use. Unlock the bathroom for showers under supervision until you can trust him. Have husband supervise by sitting in the bathroom with a book. Again, not fun, not the way it "should" be, but the only way it is going to change. If you don't have a half bath, it is going to be important that NO ONE leaves towels in the bathroom or leaves it unlocked. Put a door closer on the door and make the lock one that locks every time the door closes. It will stop a lot of the battles to get everyone to remember to lock the door.

I am sorry it is so difficult. having a difficult child is really awful in so many ways, isn't it?
 

wakeupcall

Well-Known Member
The encopresis has been ongoing since being a toddler. I took him to a Children's Hospital Gastroenterologist and when he x-rayed and showed him the stool all backed up, I thought that would do it. That was four years ago. We had already done and have since....the Miralax, Benefiber, etc. which didn't seem to make a difference at all. Of course, just with age, it's getting worse. We just had a long talk and I told him that he was going to have to wear adult diapers to school since he will be starting his freshman year and that I would get a medical release from gym. He said I didn't have to do that....well??? He TOLD me he can control it, but he has no explanation for why it continues. Fourteen years of this is a veeeeeeeeery long time.
 
Regarding the recognizing no boundaries and getting into everything, can you guys tell me why this is? I truly don't get it, even after being gfg17's mom for almost 17 years. Also why he's not likely to change. We too have locks on everything. But I still don't get the WHY of the "recognizes no boundaries" thing.
 

wakeupcall

Well-Known Member
I used to think he was looking for info or photos of his bio mom, etc. But he scrounges around in things in the garage too. I've shared with him all the info I have along with photos. He even ruffles stuff in my lingerie drawer. I'm with you....I just don't get it. WHAT are they looking for?
 

Estherfromjerusalem

Well-Known Member
Wakeupcall, I read your posting, and my heart goes out to you. My son had encopresis from the age of four and a half until about thirteen and a half, so I know what you are going through. There were days when he would poop in his pants ten times, which meant ten times he had to shower off and change underpants and pants. When I look back at it now, I don't know where I had the strength to survive it. Today he is almost 24, still living at home (he's my youngest child, I'm 65 now). I used to belong to a support group of parents for children with encopresis which was run through emails but which has since closed. I cannot tell you how much that helped me, because until I discovered it when he was about 9 or 10 years old, I thought we were the only people in the world coping with that problem. My children's doctor was completely unhelpful and he never got examined or treated for encopresis. I'm sure you can find support groups today on the Net.

That support group then saved my life. I learned that many people were coping with the problem of encopresis, and I also learned that in almost every case, it just vanishes in puberty, i.e. at around the age of 13 or 14. I don't know why, but that's what happened with my difficult child too. In all the years of corresponding with people about encopresis, I only came across one grown person who still suffered from that condition.

We developed a system of coping with the encopresis on a day-to-day basis at home. I'm sure you have your own system, but if you have specific questions, please don't hesitate to ask and I will willingly share my experience with you. There are quite a lot of us here on the board who have coped or are coping with encopresis, so please feel free to air your frustration about it.

By the way, once the encopresis passed, my difficult child became a cleanliness freak -- i.e., he can shower three times a day sometimes, and he changes his clothes a lot. I do not grumble about this, because I realise it is a reaction to what he went through when he had no control over it. And he still suffers slightly from constipation, and when he goes, it can almost block the toilet because he waits two or three days in-between. But he cleans out the toilet bowl with bleach these days. It's really quite amazing.

He also used to be up till about three every morning, usually screaming at us (husband and me) and throwing things, and cursing. The neighbors used to ask my husband if our son hit him, they were so nasty! So I truly sympathise with you.

Try to remember that he truly cannot help the encopresis, and is probably much more frustrated about it than you are. If he treats it with bravado, believe me that he is just trying to put a brave face on it. Just imagine the social suffering he must be undergoing! I know it's hard, but he has to know that you do not judge him for the encopresis. Just love him, and provide him with the clothes he needs to change into and let him feel like a "mensch" -- that's a word in Yiddish but it means to feel like a decent human being. He needs to feel that, and not to be punished for it, since he can't help it, by this stage the nerve endings at the anus end of his bowels have probably lost all ability to send out warning or full signals because they have been so squashed by the extended bowel.

Sorry -- this is a subject that I can go on and on about, I'll stop now. You have my complete and utter sympathy, and I send you a big hug.

Love, Esther
 

Estherfromjerusalem

Well-Known Member
Wow! It's been a very long time since I wrote such a long posting!!!

That subject of encopresis -- it just touches my heart, and I personally was so damaged by the whole thing, that even now writing about it, I have tears in my eyes. Oh boy, that hasn't happened to me for a long time. When I say that my heart goes out to you, I truly do mean it. Hugs.

Love, Esther
 

wakeupcall

Well-Known Member
Esther, you are so kind. It's sooo nice to know someone who understands. I feel so bad for difficult child. Right this moment, he has two boys in our home with him and they are practicing drums, etc. I KNOW he fears they will go into his room which smells like an outhouse. I can't seem to rid it of the odors no matter what I do. When we open his bedroom door in the mornings before he gets up, the stench permiates the hallway almost instantly. So sad.
 

Wiped Out

Well-Known Member
Staff member
WAkeupCall,
I've never had to deal with the encropesis. The no sleep thing we have dealt with but not in awhile. My difficult child used to sleep so little it would drive me insane-someone always had to be up with him. In fact, the night I found this place was one of those nights when difficult child would not sleep! Now, he sleeps. It is only due to medications and I can't imagine going back to those sleepless nights. I would definitely be calling your difficult child's psychiatrist to see what they can offer for the sleep issue.

I so wish you had respite available. We have been fortunate the past two years to have respite available through a county program. That will soon end and we will be where you are as we have no family available and no friends I would ask to watch difficult child.

Gentle and understanding hugs.
 

Estherfromjerusalem

Well-Known Member
Wakeupcall, that is wonderful that he has two friends in the house right now.

My difficult child wouldn't talk about "the problem", it was a taboo subject. But somehow you have to work out a system so that he changes himself and washes, as soon as he poohs. Maybe you can use the fact that he has friends who come to the house, and that he won't want them to smell how bad it is in his room, as a lever to make him clean himself up each time. We NEVER used punishments or anything like that with our child, and we never forced him to wash out his clothes -- he couldn't! But the one thing I did insist on was that as soon as he was dirty/smelly (which one of us had to tell him because he didn't smell it himself), he HAD to go and shower and change clothes, and he HAD to put the dirty stuff in a bucket with a lid on it, which was outside on the porch just outside the bathroom. I made sure he had loads and loads of clean clothes, and I dealt with all the washing of the cr*p, literally. I just felt I had to somehow help him get a life, even though he had encopresis. You have to work out a system that will work for you. There is no need for his room to be so smelly. Get a large bucket with a good fitting lid for him to put the clothes in as a first step, and then work something out from there.

By the way, I NEVER made him wear depends or anything like that.

To this day, I don't know if what I did was right or wrong. I think it was right, for us. On the other hand, since he is my youngest child and the oldest is 17 years older than him (there are eight children), it meant that I was dealing with cr*p for 30 years, so it was no wonder that just that fact got me very depressed in the end.

Everyone has to find their own way of working out how to cope with the details step by step.

Love, Esther
 
Hey,

I learned a ton on an encopresis forum (encopresis.org) which is now taken over by some product for enco called Soilng Solutions. Dang, that forum was the real deal.

I told difficult child that he would be able to take charge of the enco and that I was confident he could do it (the forum said difficult child had to feel like he was in charge, I wasn't all that confident but tried act as though I was most of the time).

I think with all the other stuff we've mentioned, the ADHD and sensory issues had a lot to do with it. Maybe even the most to do with it. Sensory-wise, difficult child doesn't feel "little" sensations so he was missing out on a lot of subtle cues from his body, and the ones he noticed, he probably ignored because he was busy doing something else or didn't want to go to the bathroom in school. I told him to pay close attention to his body and learn to respond to every little bubble, rumble, rumble, tiny fart etc. and most of all not to wait. It was his job and journey to get to know his body. It turned out that he was really interested in doing that. He made quite a few trips to the bathroom in response to many different cues (he didn't tell me, I just saw him go).

I'm wondering if our kids smell how bad it is if they are under-stimulated in a sensory way. Or maybe just no clue how the process works -- like first you feel "this" (like a rumbling tummy), then you go to the bathroom, then you pull up your pants and be on your way. When I lay it out like that, it's like an executive function thing in the frontal lobe. Stimulus -- action -- response. That does not come easy for my difficult child in most areas.

Another tip was to make the bathroom a nice, comfortable, private place. Well ours was private but I can't say it was "nice," it was and still often is a pit!

Like Esther, I did clean up but difficult child had to agree to no more leaving yucky smelly pants under his bed. He still tried to do this a lot -- the hiding. But he got over it because I told him I wouldn't clean any pants I found reeking under his bed. He also had to agree to drinking three big glasses of water a day. Miralax didn't work for us. I didn't even realize there was a choice, the pediatrician. didn't say "See what works best for you" he said "Give him Miralax." A friend of mine who works in hospice (constipated chemo clients) recommended Senna S -- softener with a little kick of laxative which difficult child needs. I still give it to him daily, he has trouble without it, gets constipated and overflows the toilet, that's the first warning sign.

We also keep an eye on anything he hypefocuses on (for us it's computer game). He has to be vigilant during these times -- knows these are risky activities and that he can't afford to ignore or procrastinate any signals. Also crucial for maintenance -- 3 big glasses water a day, and three square meals at regular times to help establish bowel routine. He doesn't get privileges unless he meets these requirements (still eats at night often though).

I know this subject has been discussed a lot -- just adding 2 cents. For me, the ADHD and sensory issues added another layer. difficult child will have to be careful with hydration and nutrition for the rest of his life.

hugs, hang in there, sorry so long
 
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susiestar

Roll With It
I have never dealt first hand with encopresis, so my suggestion of Depends was just that - a suggestion. I don't really have any idea if they would be helpful, if they would be a battle, or if they would make things worse. Every family has to work out what works best for them, regardless of what the problems are.

Others have given some great advice for the encopresis.

As for WHY he goes through everything? It is all HIS. Every single thing in the world is his and he has the right to go through it whenever he wants. I honestly believe that our difficult children believe this. They KNOW it is true like they know the sky is blue and like they know that they are perfect and the problems are all caused by someone else. It won't change unless/until the difficult child starts to believe something else. For Wiz the changes came when he BELIEVED he was going to end up in jail if he kept "taking things". Wiz let this belief extend to the point he was shoplifting. He knew he shouldn't, but he deserved the items he took - in his mind at least. When he saw that the outside world didn't care if he went through things at home when he was a kid he thought it meant he had a RIGHT to do it. When he started shoplifting it challenged that belief. He saw that he was going to JAIL and in jail he would have even fewer of his things than he would when he was in the psychiatric hospital. So he stopped stealing from others. Finally one of the cops told him that if they got a report that he went through ANYONE'S stuff then he would be arrested. This helped change his belief.

This is my take on it. I don't know why Wiz thought this, but he sure seemed to!
 

wakeupcall

Well-Known Member
susiestar, that is a terrific take on this. I've never thought about it that way. Perhaps difficult child DOES think all things belong to him....despite me telling him all the time that he owns NOTHING! He pilfers through husband's tools, my cosmetics, etc. But honestly, maybe he DOES think it's all his and he can look at it if he wants. Wow........
 
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