I need help for my son..?

Question

My son is 7 years old, was diagnosed with an ASD at the age of 3. He has made huge gains since then, academically, emotionally and mentally. I still have one HUGE problem.. he's not potty trained. I have taken away the diapers, but the school says that it is a health hazard, so he needs to wear them. I have taken him to countless doctors... they say there is nothing medically wrong. I have continously given him stool softeners and other medication.. nothing changes. Not only is he not trained for bowel, but bladder as well... in my opinion he knows when he has to urinate and he obviously is just being lazy because he is wearing a diaper. Has anyone else been in this situation? Anyone have any ideas? I'm really stuck.. it's to the point now where he isn't even allowed to ride the bus to school because of the smell (not that I blame the bus driver). I'm afraid that this is going to ruin my son's life.. please advise!
ASD is Autism Spectrum Disorder. He was technically diagnosed with PDD-NOS. The school tells me that he is up to the level he should be... I question that, but I am happy that he may be, ofcourse.

I do have an IEP for him, but the school's feelings on this is that it is NOT there "job" to potty train him. They simply supervise him when he changes himself and that's it. They said that they did not want to make it an issue this school year... in my opinion, they really don't have a choice, because it IS going to be an issue no matter what we do.

Answer 1

Not knowing you son, it is hard to know what will motivate him or what his level of understanding is.
You could try some sort of reward system. He may have a favorite hobby, past time or like particular items.

Start out simple, like getting him to tell you or indicate to you that he needs to go and reward him for it. This would teach him to pay more attention to what his body is telling him. You say he knows when he has to urinate so he must be giving you some indications. Catch him indicating this to you and reward him. Hopefully this will progress to him seeking you out when he feels the need. Do this until it is a regular occurance.

Then move on to getting him to come with you (or take him) to the toilet once he has told you. Reward him just for coming with you to the toilet, whether he makes it in time or not.

The next step is actually getting something in the bowl (whether or not he gets ALL of it in). There are 'pull ups' for toddlers that are like diaper pants that can be pulled down quickly and eventually pulled down by himself.

Make the steps between each phase small and easy to achieve. There needs to be something in it for him.

Depending on his level of understanding and ability to plan ahead, there may be an activity he would like to do that you could tell him he can't do until he is toilet trained eg swimming or a new computer game. This may motivate him to try harder.

As I said I don't know your son and all children are different so this may not be appropriate for you. I hope you get lots of answers of different things to try.

Answer 2

The first thing you need to understand is that your son is NOT being lazy. It is very difficult to potty train many children with ASD. It is very important that you understand the sensory issues associated with this disorder. He may very well know that he has to go, but he may not relate it to going in the toilet.

My suggestion is to go to the Do2Learn website and download the visual potty training series that they have there. ASD kids are highly visual and this may help him understand what he is supposed to do.

Take him into the bathroom and prompt him through the visuals. Praise each step copiously. IF he goes when he gets on the potty, reward him!

You are going to have to be persistent and consistent with this. Give the school a copy of the pictures and make sure this is done at the school as well, because it WON'T transfer to a new situation very well. If they refuse to do it, call for a new IEP and have it put into his Goals and Objectives. This is a behavior they need to teach. Obviously he isn't doing well in this area.

Finally, they CANNOT deny transportation for any reason. That is denying your child a free and appropriate public education. This is known as FAPE. The fact that you can take him to school has nothing to do with it. These people are giving you the run around. Teaching this is partly their responsibility. If they keep giving you a hard time, call the special ed director or the State Department of Education. They do not like this.

Finally, it is imperative that you read Temple Grandin's book, "Thinking in Pictures." She is a woman who has overcome autism and she describes the sensory issues in autism in a very enlightening way.

Answer 3

I have two kids on the spectrum, both late trainers. My first concern is that the school is not providing transportation based on an aspect of his disability. This is a documented and well known side of autism. If they have a problem then legally they need to provide an alternative system. Another bus, a taxi, whatever it takes. That is federal law. If people are constantly telling him he stinks, that he's doing it on purpose, etc, that's going to make it much harder. In addition this is something the school should be working on every single day. It's obviously a quality of life issue, as well as affects his learning because 1) people don't want to be around him and 2) if he has a mess it interrupts his day. He does need at least pull ups, cleaning out underwear and pants is messy, time-consuming and he just doesn't sound ready for it (plus what a shame issue for his classmates to *see*, at least with a pull up his aide can remove him as quickly and quietly as possible)

I would doubt he is being lazy, there is one of several things that may be going on here. The first being that many children with ASDs have sensory issues, which make it much harder to feel the pressure that most people feel when the bladder or bowel is full. They also lack muscle coordination, which affects release of waste as well as the creation and transportation of it within the body. Stool softeners and other medications make that worse because even if he does feel the triggers, he has very little control over the waste at that point. This comes mostly with maturity and differs for every child. it comes with experience, and lots of water and fibrous foods helped my kids get more input from their insides. You can't really help this any other way, just time.

The second issue that I would consider would be the fact that he probably appreciates predictability, and he's only ever known diapers. So working slowly on a routine and using LOTS of positive rewards, rather than ever using negative reactions, is going to help. A routine would be included in his IEP that they (the school) take him on a regular basis, use picture cards or social stories to talk about the steps they go through, bit by bit. Obviously you'll use the same designed program at home for consistency. That's VERY important. My daughter had such a hard time with all the little steps we take for granted...going into the stall, pulling her pants down, sitting down. All that had to be stated, in something like 17 steps, and we backtrained. We did all the work, and taught her the last step, then when that was mastered moved on to the second the last, etc.

Lastly, does he have sensitivities to noise or smell? My daughter and son both had the hardest time (esp with school bathrooms which are NEVER clean enough) with the lingering smell. The sound of the urine hitting the water was very overwhelming for my daughter, and the flush scared her so much that she wouldn't even go for the longest time. Forcing them to do stuff they aren't ready for just causes them to push away harder. We stopped making her flush. She just couldn't handle everything at once...so we gave her a break, let her get her nervous system used to the noise of just urinating.

I know it's hard, many kids on the spectrum never train. He sounds like he's doing really well, it's just one more thing his body and brain is working on. I hope you get some hope and good suggestions here, I remember how hard it is. Good luck

Answer 4

This is a issue. Working with students with Autism I have been in this situation before, and a teacher is a thin line to wear a dipper or not to. You might want to try those dippers that he can feel the wettness. First question does he pee in the toilet? I have done a couple of things in the past and they worked it just depend on the students.

Make the bathroom a fun pace: The first thing I have done is spend a whole weekend in the bathroom it is hard but it allows the students to becomfortable. Have the student sit on toiet watching tv, reading books, drinking lost of different things. When he goes to the bathroom in the toilet it is a huge party, he get a huge gift etc... Allow him off the toiet for an hour and then back on, but all of his highly perferred items are in the bathroom. He needs to be comfortable with the bathroom. Do this for the whole weekend or what ever you can and it did work.

In my classroom right know I am working on three six years being potty trianed. We made a box and divided it half, with a icon of pee (yellow side) and poop (brown side). EVERYTIME they go pee the get a small tressure, and larger items are saved until they go poop. When they go poop in the toilet they get the bigger tressure.But we try to make it fun and when they have acciedents we remind "It okay, but next time in the toilet and you can have your tressure." The items will deffer depending on the child. The school can carry this over to. It helps if everyone is on board.

Answer 5

Since your child has this problem because he is disabled, he should have at least a 504 plan and this plan should state what is to be done about the diapers and potty training.

Does he have a 504 plan or an IEP plan? Since he has ASK and PDD_NOS he should have IEP plan. This is special education.

Do you believe this problem is keeping him from learning at school.

I am not sure if this should be addressed by the school. I do know that they are wanting him to keep the diapers because they do not want to deal with it.

You need to find out for sure if he is up to his grade level. THey can't just 'tell' you he is, they need to show you proof in black and white.

You can write to principal stating you want to come to school and go thru ALL his files, permanent records, etc and get a copy of EVERYTHING. You have a right under FERPA law to do this and they HAVE to let you do this within 45 days from the date of your written request.

This will show you waht is really going on with him and the school. If they have anything to hide they will fight you on this, but you have this law on your side.

I would write and question what they say about the 'health hazard'. Ask them to show you the policy that states he HAS to wear the diapers.

And just do what YOU want to do and if they say he cant' come to school if he dosen't wear the diapers, you can take action on that too because they can NOT keep him from being in school because of this.

Answer 6

There is always an problem with toilet issues in children with autism. My son is 14 and he still has some problems. Please
know that you are not alone. His brain is wired different than
the rest of the population, therefore it affects every aspect of
his life. That also impacts the family members around him as well. Start at the beginning....as if he were two and just started
toilet training. This is going to take lots of time and effort on your part. They learn...its by repetition and very slowly.
Don't lose hope, just love him lots and lots and be patient.
You may have to consider the option of home schooling him.
If you need a support group, we have one online you may contact me on my profile, I'll be happy to help you.

Answer 7

My first suggestion would be to not look at his chronological age of 7 but his developmental age. Parents often forget that developmental issues will affect many things, potty training being a big one. If developmentally, he is still at the level of a 4 yr old, than it is not unusual for a boy to just be starting to potty train.

The first step is to move to pull ups (if you haven't already) and to get your son used to taking responsibility. He is old enough to learn how to change the pullup when he has urinated. He should be taught to use a wipe when he does change (this will help with the smell). The key with the bathroom, like so many other things with kids on the spectrum, is to make it part of the routine. As soon as he gets up, have him go to the bathroom. If he is still on the smaller side and his feet do not reach the floor, you may want to get a small footstool to rest his feet on ...many kids do not like the feel of being "off" the ground. Have a small basket with some books or small toys just for the bathroom. Praise him, even if he just sits for a few moments. Have him do this again before the bus. Have the school set up regular bathroom visits, at least one in the morning, before and after lunch and again before the bus. He should also be asked if he needs to go and be taken immediately at the first sign of needing to change. You may need to have this put into his IEP if the school is resistant, especially if he is not in a special ed class and/or does not have a one to one aide. Keep going..this can take some time...and don't be surprised if he is trained in place before the other.

Once the bladder issues are handled, you can work on bowel issues. Again, it is not unusual for boys to have issues around bowel movements. If his diet is decent and he drinks enough fluids, I would stop any over the counter medications. These can make it tough to "hold it" and move things along too quickly from "I think I have to go" to "HAVE to go now!" You will need to learn the signs that he is getting ready to have a bowel movement..he may move to a secluded spot, squat, grunt, there may be a look or he may go at basically the same time each day. As soon as you see any indiciation this is what is going on, off to the potty you go. Again, all attempts are met with praise. If there is an accident (and this includes urine as well as bowels) immediately go the bathroom and simply change and clean up. Talk about how the bathroom is where we go and talk through the steps of getting changed. For bowel movments, once he is somewhat cleaned up, show him how to finish cleaning himself with wipes...the sooner he can start to learn this the better as many kids on the spectrum will fight this long after being potty trained!

This is also a good time to start working on shower/bath skills. If there is an adult male in the house that you trust, have them shower together so he can show your son how to really wash well. If it is just you and your son, you can talk about it, listing the body parts and then naming each of them off as he washes in the rub or shower.

It is not ununusal for kids on the spectrum to be delayed in potty training. Some enjoy the feeling of the wet diapers or pull ups. Some do not like the feeling of the cold seat (who can blame them!), the sounds in the bathroom (the echo) and the smell (esepcially in school where heavy cleaners and disinfectants are used). Figuring out if there is a sensory issue can help. But usually the biggest thing is these kids simply are not big on change and must be worked through it slowly and with lots of praise and practice. It will take a co-operative effort between you and the school. I would add it to his IEP if possible, simply so the school has to support the plan. My son was 7 when he started potty training and it took us about 6 months. He was successful at school long before he was at home (he is always most resistant to change at home). It can be...and will be...done.

Answer 8

We had a tough way to go potty training our daughter, who also was diagnosed with PDD-NOS since she showed some autistic behaviors, but did not have the social impairments expected with kids who have ASD.

We focused on the potty training on the weekends, and were told by her doctor that kids with ASD often get comfortable in the routine of using the diaper, and are less likely than non-ASD kids to be bothered by the sensations of wetness or soil.

We used the Once Upon a Potty tapes for our daughter...read her the potty-themed books, and kept close watch on her without the diaper. To make things easier, we let her pick out some underwear with her favorite characters on them and had her in a t-shirt and underwear...easier for her to pull down underwear and easier for us since it meant less laundry if she did have an accident.

The first time she urinated in the underwear, she was very upset and HATED the feeling of the urine running down her legs. It took a few weekends of accidents, but we did manage to get her trained...at age 6! I was having terrible visions of her graduating high school in Depends!

You also will want to see if you can get Occupational Therapy for your son...this often does wonders for helping ASD kids improve their self care skills, including toileting.

There are also books and other resources out there for toilet-training ASD children...run a search using the terms "toilet training autism".

Finally, good luck in your potty training endeavor!