Daytime incontinence

Alexander has been diagnosed with a very weak control of his bladder and his bowels. The nerves between his bladder and bowels and his brain is not so well developed as they should. We have been told that he probably will suffer from incontinence problems for the rest of his life but maybe he gains more control when he gets older. Besides that he has been diagnosed with Aspergers which may contribute to his incontinence problems. 

He has only been in real underwair for very short periods of time and with no succes. For some years ago we decided to take him out of diapers and training pants during a summer holiday but after a week where we had to change his clothes 5-7 times every day we gave up.

/Anna 

It doesn't look like he is gaining more control as he is getting older, so I would not feel bad if I was you about putting him back in diapers full time. Of course he fells like it would be a let down so you have to let him know it is not. Tell him he still need to work on independent "social continence", the capability to manage the problem himself by learning to change diapers and clean himself up. Most parents lavish great praise on toilet training goals and instill pride in their kids that way. You simply need to replace that praise and pride by setting goals and rewards on independent social continence. Yes he will always need to wear diapers, but being able to clean himself up especially after a bowel accident is also worthy of praise in his case since he is disabled.

Thanks for the advice. Since Sunday morning he has been in diapers full time. We have tried to tell him that it is the best for him to be in diapers during the day too. After a lot of crying he seems to have accepted it now. 

You are right about setting up the right goals for Alexander. So far we have been very focused on the goal of having him toilet trained the day. However, with no success at all.

The first new goal will be to have him tell us everytime he has had an accident and needs his diaper changed. As it is now he never ask for a diaper change when he has had an accident in his diaper. If we ask him he often denies it even when everyone can smell it and sometimes i have to change him under tearfull protests. 

Next step will be to have him take care of his own diaper changes but i fear there is a long way until we reach that goal.

/Anna

Hi Anna,

    You are not alone.  We have an 11 y/o daughter with Asperger's, high functioning, but who also has bladder.  She has never had anytime bladder control whatsoever.  I would recommend switching over to disposables for many reasons.  Maybe it is not environmentally the best, but changing is easier, it is easier to dispose of, and with buying in bulk you will save money.  There is ZERO reason to persist with cloth and it just adds a lot of complications I think.  Since he has Asperger's, he is high functioning enough that once he gets a little older and can do better with bowel control you can hopefully also start getting him to change himself.  We still do all our daughter's changes but hope she can start being more responsible over time.

   You said he cries when put in diapers or when it gets uncomfortable which is a good sign.  Our daughter could stay in the same wet diaper all day long and not care!  We still need to frequently check her ourselves...sigh.

Hope this helps!!

Hi Melissa,

Thanks for your answer.

We use cloth diapers because Alexander gets diaper rash when he is in disposable diapers for a longer periode of time. Sometimes he uses disposable diapers when we are travelling or in other cases where cloth diapers are difficult to handle - but never for more than 1-2 days. Furthermore Alexander seems to prefer cloth diapers because they are more comfy for him to wear and i think he considers them to be less babyish too.

/Anne 

Anna,

     Any luck so far on getting Alexander to start to signal when he needs a diaper change?  I know it can get frustrating sometimes.  Our daughter has no problem sitting in a wet diaper all day long.  We still need to regularly do diaper checks and make sure she is not soaked.

     That is great that he at least is more accepting of the cloth diapers and does not find them as babyish as disposable ones.  I guess you found one that is more neutral, not babyish and discreet?  Our daughter doesn't seem to care about babyishness on the part of her diapers.  But she has certain behaviours or patterns that are regressive (part of her ASD).  For example, she still takes a paci in order to get to sleep at night.  Is Alexander otherwise a high-functioning Asperger's kid except for the bladder/bowel problems?

Hi Melissa,

So far we have had no luck getting Alexander to signal when he needs a diaper change. Even after he has messed in his diaper he continues to play without saying anything and it is very frustrating. So we have to check him regulary.

Alexander goes to a special school for mentally handicapped children but he is relatively high-functioning. However, in some situations he does behave very regressive.

/Anna

We have tried DryNites as training pants during the day but they cannot take a big wetting or messing accident without leaking. Therefore we have decided to use a real diapers during the day.

/Anna

YEP IF HE IS A HEAVY WETTER , I AM TOO , I WEAR ADULT DIAPERS 24/7 , AND THEY LEAK TOO IF I WET THEM MORE THAN TWICE.

I am 26 and have chronic enurisis and at night still am in cloth diapers and comco plastic pants and assurance pullups during the day. It is good that he understands and is willing to try what ever seems to work.

Thank you for your message. Yes Alexander has completely accepted to be in diapers full time now and he does not seem to be unhappy about being in diapers. 

/Anna

Anna,

I'm glad to hear that Alexander is not fighting being diapered. Any luck in having him identify when he needs to be changed? How often are you needing to change him?

Jeffrey

Jeffrey, No Alexander does still not identify when he needs to be changed - not even when he has messed heavily in his diapers. If i ask him whether he needs to have his diapers changed he usually says no. Therefore i still have to check the condition of his diapers frequently. I still hope he will soon begin to tell me when he needs a diaper change. This may also be the signal for us that he is prepared to start toilet training.

I need to change him 7-8 times every day. We have a large changing table for him in our bedroom and it is a big help. We try to make his diaper changes a good experience for him. Often I tell him stories or we talk together while I clean and diaper him. It has limited the number of times where he starts to cry loud while he is laying on the changing table.

/Anna

Anna,

Thanks for the reply.

I agree that once he starts to tell you he needs to be changed, he will probably be ready for potty training. Telling you he doesn't need to be changed when he needs to be probably means that any attempt at potty training now would be fruitless. Since you have to check him all of the time, do you leave him pantless while at home so it is easier to check the status of his diapers or does he want his diapers hidden from view?

7-8 changes a day is a lot of work! Does your husband help? Is he still mainly wearing cloth diapers? That seems like a lot of laundry to do. How do you handle changes outside of the house? It doesn't seem like people would be accpeting of him going into the women's bathroom to be changed.

You seem like a very good person. You deal with all of this hard work and seem to remain farily positive!

Best wishes,

Jeffrey

Hi Jeffrey,

Yes it is a lot of hard work having a disabled child like Alexander. Basically he requires exactly the same care as a little child and it is not only for diapering but also for daily activities like bathing and feeding - although he is almost 11 years old.

Alexander is not very conscious about his diapers but i prefer that his diapers is hidden from view. However if it is hot it is more comfortable for him to play without pants over his diapers.

Usually i take care of his diaper changes. Changing diapers has always been a challenge for my husband even when our children were small. He cannot stand the smell of messy diapers.

Alexander wears cloth diapers and plastic diaper pants at home and disposable diapers at school. Of cause cloth diapers gives a lot of washing but it is not a big problem as we have a good washing machine.

Diaper changing outside the house can sometimes be a challenge. However most shopping centers have special rooms for baby care or restrooms for disabled persons. Some of these rooms are equipped with a changing table large enough for Alexander. Otherwise we do have a diaper bag with a large plastic pad so we can convert a table or a bed into a changing table for Alexander. This is usefull during travelling or family visits.

/Anna

Hi Jeffery,

When Alexander is in disposable diapers he wears size XS (usually Tena Slip). He is small of his age and he can use the largest baby diapers available but they are too tight for him and not comfortable.

Alexander goes to a special school and he is not the only child in diapers. The teachers and helpers are used to take care of diaper changing and the school has a bathroom with diaper changing facilities for larger children.

/Anna

DO YOU FEEL AL WILL BE IN DIAPER ALL HIS LIFE?

Hi Jeffery,

I really hope one day he will able to control his bladder and bowels and stop using his diapers. However, he is still not motivated to start toilet training and we have decided not to start toilet training again before he is ready.

/Anna