13 year old son STILL wears diapers - need help

Discussion in 'General Parenting' started by single_dad, Apr 24, 2012.

  1. single_dad

    single_dad New Member

    Hello -- I am a 39 year old single father of a 13 year old difficult child, adopted from Russia with ODD, ADHD, manic episodes and bowel disorders that mean that he has occasional outbursts of sudden, explosive diarrhea. Many of these issues come from neglect in Russian orphanages during his early years and substance abuse by his birth mother.

    He insists on wearing diapers 24.7.365 ; which I can see is understandable given that he has had a few rather messy unexpected accidents in his diapers both at school and at home. He needs to wear 'youth diapers' -- Abena Abri-Form S4 diapers (he's big for his age), because pull-up style diapers are not nearly thick enough to stand up to his episodes of explosive diarrhea. He also still wets the bed very heavily, needing these thicker diapers -- at night I need to duck tape his diapers tightly shut because there have been isolated incidents of fecal smearing and he has recently started to shove his hand down his diaper to play with himself at night, often destroying the diaper and leading to leaks.

    The thing is that besides bedwetting and occasional episodes of colitis, he has normal control over his bowels and bladder. Even when he does have episodes of colitis, rarely are they so urgent that he couldn't make it to the bathroom in time. He absolutely refuses to use the toilet and I know he is using the diapers as a crutch, both for fear of using the toilet, esp in public places and because he is terrified of having a messy accident in his pants or inadequate pullup diapers.

    He is mentally operating at around an 8 year old's level and the thing that riles me up the most is that 98% of the time (excluding bedwetting), he knowingly chooses to use his diapers; I can't help but think that he does this out of defiance. While he openly uses his diapers at home / around family, at school he avoids using his diapers at all costs. His Special Education teachers know about the problem and have someone capable of changing his diaper when his colitis is acting up -- believe me you do not want to spend more than 10 minutes in a room with a 13 year old boy in an explosively messy diaper. Otherwise he either completely holds going to the bathroom at all or will go #1 once during the day, hence avoiding the need for a diaper change at school (I change his diaper right before and right after school).

    My question is whether any one else has gone through a similar issue with their difficult child. It gets tedious changing 1 -2 messy diapers a day and the same amount of wet diapers a day -- especially on a 13 year old boy that is larger than average. The cleanup and smell of the messy diapers is extremely taxing and time consuming -- not to mention that these premium diapers are not cheap.

    On one hand he really does need the backup security of a diaper due to his episodes of colitis, and pullup style diapers just don't do the trick in that case. Which basically leaves me with the option of keeping him in tab-style diapers that I have to change about four times a day or trying to make him go without diapers, which also would be disastrous both mentally and in the case of accidents, especially at school.

    Any other diaper suggestions / ways to deal with this? Being a single dad I just don't have the time to spend a ton of time thinking about this, though I did see a product called the Abena Abri San for bowel incontinence that doesn't fasten on like a tape style diaper, it is held in place by mesh undergarments -- I really don't want to still be changing his messy diapers when he goes to high school next year!

    Any helpful suggestions/ experience welcome !
  2. DaisyFace

    DaisyFace Love me...Love me not

    Hello and welcome!

    Wow - you have really got your hands full!

    First thing that jumps out at me it that there must be a LOT more going on with this young man than just ADHD and ODD - and that you probably need more help and support than you are getting. "manic episodes" - does that mean that BiPolar is suspected, too?

    I'm wondering who has diagnosed this young man? and is anyone working with him on some of these anxieties around the bathroom and using public toilets?
  3. Tiapet

    Tiapet Old Hand

    Hi and welcome! I second Daisy on that there seems to be a lot more going on with your son then what he has been currently diagnosed with as you've told us. I would hope that if you don't have more support or services for him that that could be the next thing you look into for yourself and for him. Sounds like both of you would benefit from it and also would help in identifying what else is going on.

    As for anything else that might help you with his accidents, I have no experience with such things. The closest I can come to that is a 13 year old son who pees all over the seat and floor at times (he recently started getting slightly better) and used to leave poop or poop in his underwear as well as sometimes pee. The pee was a combination of not paying attention due to ADHD and being active but also he would have emotional reactions (years ago) to my exhusband's phone calls. If he talked to him he would pee in his pants. It seemed to be a PTSD reaction or something like it.

    Hasn't the doctor ever spoken about certain foods to help control some of the colitis? If I recall correctly there are some foods that can actually make that worse there for making it worse for him as well with accidents.
  4. single_dad

    single_dad New Member

    Yes, I guess I understated 'manic episodes' as he does take Risperdal for mood stabilization, essentially bipolar disorder. Also going to try a new psychiatrist to get a better assessment.

    Unfortunately right now he is at an overcrowded public school Special Education program so it is mostly me working on his bathroom issues with a bit of help from extended family -- luckily I work mostly from home -- so I have extra time to spend working with him (and to change his diapers).

    I have tried everything I can think of to encourage normal usage of the toilet and stopping the unnecessary usage of his diapers, but he always flies into a rage when I bring it up, he really does use the diapers as a blanket of security because of his extreme fear of having a colitis-related accident in his pants -- understandable -- also going to try to see a child psychologist, gastroenterologist to try and deal with the fear of bathrooms, dependance on diapers and try to get a new medication to calm down the bowel flare ups -- the only thing is since I'm self employed I'm underinsured and a bit short on funds.

    I think that a lot of his issues stem from essentially being abandoned as a child, then again by his adoptive mother, so he feels the need to be 'taken care of' which includes the very individual attention given during diaper changes -- and right now I'm really all he has -- plus my new girlfriend who has been super understanding and even helps out with diaper changes, though I get vibes of resentment from him towards her encroachment on my attention.

    He has become extremely attached to me lately and I am trying to get him to take more responsibility for his diapering duties along with making his own friends ... There is no way he is capable of changing messy diapers -- I tried having him do that once and lets just say the results weren't pretty, but I definitely think that I am going to try and encourage him to take care of his own wet diapers -- though the couple of times I've tried that he's mucked up the tapes and resulted in a big old, saggy and leaky diaper - I guess I can have him take care of everything but taping them closed.

    Another alternative I'm thinking is for him to only wear diapers to school / social situations (and also for bedwetting) while reassuring him that if he does have an accident at home its no big deal, as a way to wean him off of diapers.

    It is just getting a little bit ridiculous ... a couple of weeks ago I went to see a relative a few hours plane ride away I had to change his messy diapers in the handicapped stall of a public men's room -- I couldn't bring him on a plane with a soiled diaper -- and believe me a 13 year old boy walking into a stall with his father gets very suspicious looks.

    The oddest thing is that while he refuses to even go near a public toilet by himself, he has no problem having a poopy diaper changed in a public restroom. When I had to change his messy diaper in the handicapped stall of a public airport bathroom (not an easy task) he showed none of the signs of fear or anxiety that he does when I suggest he just *goes #1* in the toilet at home.

    I've realized he has serious neglect and neediness issues and am getting all the help for him that I can. I think I'm going to have him spend a night or so a week at either my girlfriend or brother's house to help his separation problems.
  5. single_dad

    single_dad New Member

    Yes, I have modified his diet to try and help the colitis by cutting out sugars and junk food along with dairy - has reduced episodes and severity of episodes some -- went from about 1-2 episodes per week of unexpected and explosive diarrhea in his diaper to about 1 to 2 episodes every two weeks.
  6. buddy

    buddy New Member

    Hi there, welcome! I agree with the others that there is more to this. You said it feels like defiance, and that could really be true (I mean choosing to wear the diapers at all times etc....) but it could also be that he is very rigid in his rules, since he does sound like he has some overall disability (cognitive issues, the history, attachment stuff, etc.)....

    Has he ever had a neuropsychological evaluation? Has he had an Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) evaluation? Autism evaluation? etc....you have likely done much of that but I didn't see it mentioned so just bringing it up in case. You mentioned several issues with abandonment etc...and his being more possessive of you, does he have Attachment Disorder (or reactive attachment disorder).... bm issues can be a big part of any of those three, and our adopted/hurt kids can also have more than one of these. Neuropsychs can gave a broader diagnostic viewpoint to things, looking at developmental, mood based, psychiatric, etc...diagnoses.

    This may seem like a very odd suggestion, and I am not even sure if there is such an option out there. I wonder if there is a treatment facility where he could stay for a short time (like a hospital stay) where they could work on this....If he has sensory or autism like features, an autism treatment program likely would have the most experience with this kind of behavior and be able to handle it in a positive behavioral way....maybe using ABA or some other kind of therapy. Or having in home people who can really take you out of the equation. I am sure it is virtually unheard of but it is one of those brain storming things.......

    OH well, welcome to the CD board, and really glad you have found us. There certainly are people here who get poop issues, even with older kids. My son thank heaven had his last pooping outside of a toilet episode when 8ish. He actually remembers it! Hang tough and I hope someone who has lived it comes along....maybe Esther?? has some ideas??
  7. Josie

    Josie Active Member

    Did you try eliminating gluten as well as dairy and junk food? That might help with the colitis.

    As a side benefit, my daughter's ODD went away when she went on the girlfriend/CF diet.
  8. susiestar

    susiestar Roll With It

    It sure sounds like there is a LOT more than adhd and odd going on here. I know the budget problems and time problms involved in arranging multiple assessments, but he really truly needs a FULL evaluation, both physical and mental/psychological/Occupational Therapist (OT)/Speech Language Pathologist (SLP) to work on the problems.

    Have you tried applying for SSI or state kids insurance (medicaid) for him? Because of the severity of his problems AND the developmental delays, it is possible that you would qualify even if you have too high an income. I think one of the things you might look into is called a Katie Beckett waiver - it is for kids with severe disabilities. It helps cover a LOT that a parent just couldn't otherwise handle. It is in all states though some states may have another name that also applies to the program.

    If possible, a children's hospital would be an awesome place to find the various experts that are needed in one place. We often recommend a neuropsychologist for doing most of the testing as good ones do 8-12 hours of testing broken up into several appts (as many as are needed). You also really NEED a good gastroenterologist and he probably needs a colonoscopy among other tests. Have you tried the gluten/casein free diet (often called gluten-free, casein-free or girlfriend/cf diet on other forums)? Yes, it is recommended for celiac disease most often, but it is also helpful for many other issues. Some autistic children and children with other problems are helped greatly by this. You would start off with what is called an elimination diet where the most common allergens are removed from his diet for a period of time. then foods are added back slowly, 1 at a time, to see if they cause problems.

    I cannot imagine how upsetting it would be for him to have the diarrhea at school. But I also cannot imagine how hard it is for you to have to deal with all of his diapers. You have my sympathy. I do think you need a psychiatrist and psychologist on board to help with the psychological aspects of this problem also.

    An Occupational Therapist (OT) evaluation for sensory issues is going to be a MUST if it hasn't been done. These are truly helpful and one of a handful of ways to help with-o adding medications. School should be able to do part of the Occupational Therapist (OT) evaluation, but a private (out of school) evaluation will give a more thorough evaluation because the school evaluation is designed to find and treat problems that relate to school, not to his entire life.

    If he is bipolar, why is he not on any mood stabilizers? It is hard to find the right combination, but risperdal is an atypical antipsychotic and is NOT a mood stabilizer. People iwth bipolar NEED mood stabilizers esp. they are often given with atyp antis\psychotics but they are a crucial part of the medication combo to give him the best results. most mood stabilizers are also antiseizure medications, but a good psychiatrist will know the best ones to trial for him. Have you got a copy of The Bipolar Child by Papalous? It is supposed to be one of, if not the, best books on bipolar in children and it explains the medication protocol for treating bipolar VERY well. I would take a copy of it to the psychiatrist with you, and ask why the protocol hasn't been trialed as recommended by the board that certifies pediatrician and adolescent psychiatrists.

    The link in my signature at the bottom of this post will take you to a thread about a Parent Report. The Parent Report is one of the most powerful tools a Warrior Parent can have in their arsenal. It has ALL the info about your child in ONE place that you can take to appts and keep everything organized in - and give copies of relevant sections to the various docs/experts you are working with. Moms who were on this forum before I joined came up with the outline and it is truly excellent.

    Given the adoption, has anyone discussed attachment therapy? It isn't easy, but it sounds like he might benefit from it.

    How well informed are you regarding the IEP he has at school? Do you have an advocate to help you with the school? School is required to do certain things, and in my opinion this toileting issue is something that they probably should be helping you with at least to some degree. Regardless of how overcrowded or overburdened the district is, they are still required to do certain things and often it takes a lot of knowledge of the ins and outs of the IEP regulations and an advocate to push them to provide what your child needs. Advocates are usually free to parents but you will likely have to google your state and educational advocate or else call the state level board of education to find one.

    Welcome to the board!
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm with Buddy on this one. Has he had a neuropsychologist evaluation for Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) and what about attachment disorder? Also, does he have a normal IQ or does he have cognitive issues?

    Can you tell us more about his back story? How long has he lived with you?

    A big welcome to the board! :)
  10. BeachPeace

    BeachPeace Guest

    Hi there and welcome.
    I am an adoptive mom to a child who was drug and alcohol exposed in utero, abused, and neglected and not removed from his bio home until he was 5. We have a laundry list of diagnoses here as well and many many different trials of medications and specialists. You have been given a wealth of good advice here already.
    My thoughts - your signature line states "ulcerative colitis" as a dignosis. If this is accurate, then he very well may have no control over his explosive colitis. I am a RN and worked for years in home health care. Is this diagnosis assumed or has he been diagnosed by a GI doctor?
    UC can be very serious and increasing bowel incontinence can indicate disease progression.
  11. I just want to say that my heart goes out to you - I am so sorry for all you are going through and doing it alone. Bless you for taking care of your son. I will be praying for you him and you. May you get answers, healing, strength, hope and joy.
  12. family mum

    family mum New Member

    You sound like an amazing dad. You are giving him so much care and love. Remember to give yourself some care and love too.
  13. TerryJ2

    TerryJ2 Well-Known Member

    Hi Single-Dad. Welcome.

    I am so sorry for all of your troubles. I can surely imagine the looks you get going into a bathroom stall together! Makes you want to put a sign on your son's back!

    I agree with-the others, that he's got more going on, emotionally and physically. I would also suggest that the diaper issue is not only fear, but control, as you have pretty much figured out. It's going to be a long road, but you'll get there.

    I think it's a good thing that he's very dependent upon you and think it's just a stage ... he may be regressing to get a hold on all of the stages he missed as an infant and toddler. No fun at this age, for sure. You can work on that with-the therapist. j

    I would also suggest changing his diet, it you haven't already. No gluten, no milk/dairy. It's expensive to buy rice bread ($6 a loaf) but it will be worth it for all of the time you save not having to clean up all the time. Also, isn't he on some calming medications for his colitis?

    I agree with-FamilyMum, take care of yourself, too.
  14. susiestar

    susiestar Roll With It

    Single Dad, others have given great advice. Please be aware that there ARE ways to make homemade convenience foods to simplify your life and still stay within dietary restrictions/needs. While rice bread is expensive, it probably could be made in a breadmaker with some patient trial and error. With the internet, that trial and error could be cut significantly. You can get cookbooks to make the foods you need and you can learn to make your own mixes. so one day you spend some time mixing giant containers of mixes and for several weeks you just use those. It really can payoff in a big way - both in time saving and $$ saving. Plus it could end up saving on the cost of some of the diapers.

    Just a thought, and if you need help with figuring out how to make mixes from recipes, I'm available. I have done it a lot because I cannot eat a lot of prepared mixes because I end up with migraines.
  15. MICHL

    MICHL New Member

    Single Dad, My difficult child (17 next month!) has encopresis all his life and has always soiled his underwear/pants, and it doesn't seem to bother him except the frustration of having to deal with changing. He flies into a rage when either husband or i try to help. i had to move out on my own or honest i would have wanted to end my life, i was having a lot of anger turning inward towards myself. I'm still in the same city & "help out" as much as i can. husband works at home, and difficult child has refused to go to school 1-2 days a week lately. It's impossible for one or two parents to manage a difficult child like this especially when he doesn't want to be helped. I refuse to deal with his - - - - tty underwear, as does husband, so they all get thrown out if it's not mildly soiled. Its a total disaster. He must want treatment (gastro dr. instructions/protocol) and we tried several times and difficult child doesn't follow instructions, no cooperations.
  16. qwerty

    qwerty New Member

    Have you tried probiotics? Probiotics may help not only with the diarrhea but also with conduct issues.

    They are harmless and inexpensive.
  17. markgoree

    markgoree New Member

    Hi my name is mark and I had the same problems your son does when my mom and me finally talked about it got better and also take it from me your child is normal the doctors that put him on those medications are not trust me if you take him off those crazy medication's and the add medications and tell him you no he has a problem with going to the bathroom and tell him you will help him with it then he will get better I no cuz when my mom did this it worked the medications you have him on can do that to your body and bye the way my mom is a nurse so please show more simpathy for him and tell him you love him do not get mad at him tell him you understand OK and all should go well OK