Guest Author - Bonnie Sayers
There comes a time when you must face the monumental task of toilet training a teen on the autism spectrum. That time period has descended upon me as my nonverbal son Matthew finishes up seventh grade in a special education class, where he will be again next year as an eighth grader and last year at this Middle School.
Most of the information available is suited for children in the elementary school setting in that age group. It is my desire to have Matthew entering high school without wearing GoodNites underpants. Insurance is no longer paying for name brand diapers, so our last delivery was for some very large generic winged diapers that Matthew indicated he would not wear. Since Matthew was five years old we have been receiving cases of GoodNites, so I can see where changing the brand, texture and look to an adult type diaper is undesired.
Matthew turns fourteen at the end of this month and has been going through some growth spurts that are uncomfortable to him. He is on the thin side, although we started this year back on Risperdal after being on Geodon for seven years. As a result his eating has increased at school, but he still does not drink any liquids there. At home it is the opposite where his fluid intake is more than his food, thus his bowel movements are not consistent.
Lunch at school has largely consisted of burritos, pizza, quesadillas, bread, calzone, pancakes or taco triangles. At home he consumes rice milk, peanut butter cups, pretzels, pizza and cheese snacks. Most of his diaper changes are from loose bowel movements, consistency similar to creamy peanut butter. He has had a few solid bowel movements, but not on a regular basis.
According to his aide there are times at school when Matthew will be walking to a class or lunch and stop to squat right there. This is something that started this school year and he does it at home as well. He will even scream out at various times. At school Matthew goes into a stall with his aide and removes his diaper and gets cleaned. He will put on the new GoodNites underpants and his school clothes before his sneakers are tied for him. At home he prefers to lie down and have it all done.
At the recent IEP meeting, which was also his first ITP due to his turning fourteen this year, I brought up toilet training as the self-help goal. This past year his goals were first to zip his jacket and once that was achieved we amended the IEP with the new goal of buttoning his shirt, which has yet to be reached. This goal was put into the new IEP instead of tying his shoes since the teacher thought that was not attainable.
The feedback I received at the IEP was that the Middle School has never done toilet training before so they did not have any information to proceed with. The teacher stated the time taking Matthew to the restroom would take away from his school work. An example of Matthew´┐Żs school work is he sorts chips, nuts and bolts and does puzzles. I think toilet training is a life skill that is more pertinent to his independence than spending another year doing the same thing he has done for many years thus far. The IEP team also brought up special education centers, which is not an appropriate school setting for Matthew.
The IEP was to reconvene so the information could be obtained on toilet training. The next day I placed a folder with visual and written materials I found online that included goals for an IEP for toilet training, into Matthew's backpack for the teacher.
I also contacted a specialist at the school district to let them know the special education department at the Middle School needed guidance on adopting a toileting program for my son's IEP. I followed up with the Bridge Coordinator and read the goals to her over the phone and let her know that I sent a folder with papers to the teacher. This person turned out not to be at the IEP meeting we had last week to put the final touches on the IEP and I was informed we would have to do an amendment since the IEP was closed in the system.
With the Bridge Coordinator not there no one was sure if she had spoken to anyone at the District. I had brought along some books on the topic of toilet training a child on the autism spectrum and showed the charts and case examples to the teacher.
I also left him with a print out of the goals I had found from a toileting presentation. This is a 54 page document, so I only printed out the necessary pages 6, 19, 33, 37-39, 43-50.
The Self-Help skills book pictured below that is available at Amazon has a table on page 132 - Dry Pants and Toilet Training Data Sheet that I want to photocopy for when the plan starts in the fall. The Data noted is U for urine, B for bowel, C for combined urine and bowel or N for nothing. There is also a checklist of important component skills that may help to determine readiness. Another list is of the items needed for toilet training, including a clock or watch and rubber gloves.
This book covers systematic and intensive training, as well as nighttime training and has examples. The Toilet Training book is the second edition, but I also have the first edition. This book covers sitting, standing, case examples of older kids, sensory issues with clothing, using toilet paper and habit training. I especially like the caution blocks in every chapter.
The ready, set, potty! book is due out soon, but I did receive a comped copy from Jessica Kingsley Publishers. This is a paperback with lists, pictures and charts. This book covers rewards, bathroom baskets, the toilet seat and has tips specifically for parents and teachers.
The Specialist I contacted at the District told us on the speaker phone at the IEP that we need to have a Behavior Specialist or School Psychologist Specialist do an assessment to establish baseline data on toileting. He needs to be taught to recognize when to go to the bathroom and learn independence. They will be collaborating on an assessment to establish a toileting routine. So the next step is to get the assessment request put in as soon as school starts in the fall.
I am also attending a toileting workshop this summer through the Regional Center. Matthew's aide is preparing for toilet training his toddler and is on board with getting Matthew established in a routine as well. We just need goals to implement and guidance from the assessment team once that takes place.
Please stop by the forum to share your experiences on this topic.
Visual Aids for Learning - Toileting Pack
TEACCH Autism Program - Applying Structured Teaching Principles to Toilet Training
Toilet Training - BBB Autism Support Network
Children and Bed Wetting
Are your Bowels moving -Kids Health
Special Needs Potty Training Tips - LiveStrong
Potty Training Charts - FREE
Psychological Readiness and Motor Skills Needed for Toilet Training - Healthy Children
Bathroom pecs - Do2Learn
Social Story Potty Book
Generic Data Sheets - Polyoxo
Another Mom's Experience - BellaOnline Vision Issues Editor