My husband and I made a deal before we had kids... if we had a girl "it" was my job, if we had a boy "it" was his job.
Our girl came first so I stepped up. I encouraged, loved on, patiently (HA!) waited and watched... oh so much watching to "read" the signs. I challenged and rewarded. I made charts and gave stickers... oh so many stickers. I cheered and celebrated. You name it, I did it to no avail. It wasn't until she decided, "Mummy I want undies" that there were any real results. She was three years old. I was so relieved. Job done!
Enter our son and his Autism Spectrum Disorder diagnosis rendering all the "usual" ways pretty ineffective. He can't tell us if he understands what's happening. He is very good at hiding and rarely would he come and take us to change his nappy. Sometimes he would use the contents of his nappy (you know what I mean!) as a tool to visually "stim" off, flicking it with joy all over the furniture, floor, walls, himself... anything that was around him. How do we make this work? How do we get him to connect what's happening with his body.
When you have a child who has ASD you learn pretty quickly to break everything down into small steps. What just comes naturally and logically to the majority of us, doesn't to Harrison. He needs things slowed right down. He needs a visual command to back up the auditory command. He needs something to show that when you're wet in certain places it's not fun. He needs SO much more than stickers and cheering.
Suffice to say, Daddy was let off the hook. This time it's a team effort.
Our son's psychologist, his speech therapist, his Occupational Therapist and us all discussed the plan. Then we had to observe his toileting patterns, record any hiding or smearing etc and "train" him to sit on the toilet for at lease two minutes without issue. After analysing the data the psychologist, who as it happens is developing a reputation as the primary "wee and poo" expert for ASD families (score!) decided he would need a "toileting alarm". Ummmmmmm, OK!?!?
A tiny little disc that sits in the front of the undies (undies that are very difficult to locate and EXPENSIVE) and plays a tune the minute moisture hits it. The tune it plays? "It's a Small World" (not the most encouraging of songs for boys we thought!) We ordered the alarms from here http://www.tinkletoonz.com/
The theory is we hear the alarm, say "Stop... toilet" with "clear intent", show the visual aid, sit him on the toilet and give him a highly motivating reward when he does the job. (In our son's case... a lolly for number one and a Killer Python lolly for number two) We do this for at least four hours a day to try and catch him in the act! All the data is recorded and analysed by the Psychologist weekly to pick up any patterns or avoidance issues. Eventually he will put the feelings attached to the alarm and our reactions all together and figure out, when "I feel this... I need to go to the toilet."
We have been doing this for three weeks and not once has he gone in the toilet... NOT ONCE! We have had numerous near misses and many dry days. At first it was because we never heard the alarm. This was quickly fixed by following him a lot more closely, which of course means he is avoiding it all together! So while I run around with towels and the like to catch any accidents, he is going about his day holding off until he gets his nappy. Cheeky! I think he's onto us!
Part of our family journey with ASD has been the discovery that our son is even classified "unique" in the world of the spectrum. What has often worked with other ASD children doesn't with him. He provides the therapists with a lot of challenging moments and stretches them to learn more in their fields. Frankly, this completely does my head in and leaves me with not many options. I've had to really get a handle on him and develop an ability to practically read his mind to know how to move him through certain things. Educating the educated as I go. It is a long, slow and often very heartbreaking process. We start many things with the best of intentions and often end up putting them on hold until a new hurdle that we didn't see coming is cleared and we can safely start the process again. Hard work!
I am very grateful for our "team" and am confident that we will get there in the end but I know if I hear "It's A Small World" played in the future I'm going to break out into a nervous sweat and reach for the nearest towel.
