Special Education meeting; vibrating watches

[therese005us]

today we had a meeting. They came to MY house!
it was an AVT and an IPAVT and a Health Nurse. I'm not so good with the abbreviations that everyone seems to talk in. However, the AVT is an Assessment Visiting teaching and the IP is Intellectual Impairment ...?? Teacher.

The Nurse was well versed on incontinence aids that are available to us, and how to get them for free (good!) including toilet paper, creams, pads etc. The other teachers are well versed on how to go about making toileting programs work, especially in the case of impairments.

So, they asked what we do at home, and what I would like to see happen at school. We talked for nearly two hours and they started writing down ideas for a printed program for the wall at school/home. Rewards, aids...
Minute by minute, it was incredible what all the brainstorming achieved.

For example, sometimes sitting ont he toilet for the 4 minutes is a chore for cherub, and blowing on the hand etc. (tantrums ++++) so, one idea is, how about taking the emphasis off the timer - give her some bubbles to blow, or a play windmill,or even a whistle (maybe not!)

Rewards - only for getting the poo in the toilet - like some fun time to do a jigsaw, or similar activity.

Making cherub own the problem herself. They suggested a vibrating alarm watch. That means she doesn't have to be directed by me or the teacher - it's a discreet thing. (does anyone know where i can get one cheaply? the ones I have looked at via internet are $30 or more (USD).

I'm not to verbally direct her, but provide her with all she needs to complete this herself; and there is going to be a chart with all the steps detailed on it.

If she's had an accident, again, no verbal directions, but a specific sign that she needs to leave and go to teh bathroom.

It was a very positive meeting.

We also have the extra aide hours for the school to help her, as well as the special incontinence aide who is already giving cherub 3 hours a week.

We just need the 'danger money' allowance for the aides as they are threatening to strike or leave without it.

Interesting extra idea. cherub goes to bathroom at school on her own, then checks if she needs help to clean up.If she does, then she presses an alarm that goes to the aide who then can come and offer assistance. Taht way, the aide isn't taken out of classroom time unnecessarily.

Suggestion was also made that if one aide comes to her assistance and feels she needs assistance of another aide, she can call for it in the same way. Her in OZ, they feel the aides need to work in pairs in case of allegations of XXXYYZZ, and one of the complaints from teh school is that two teachers are being tied up for one child.

 

[Marguerite]

All you need now is follow-through from the aides.

Re getting the watch - are you getting carer funding for her from Centrelink? It owuld be going to either you or her mother, its a matter of who is specified as her carer. The problem is the way she is bouncin g from one plce to another. Maybe talk to your nearest Centrelink office? Or better still, call them and discuss the situation. There's some good funding available there. The other thing - could the funding for the watch come from the support funding? I'm not sure what limitations there are on how the money is spent, but equipment is one thing that could be OK.

Another option for her is a small wind-up timer. There used to be timers on keyrings that you could get, you used them to remind you to go back and put more coins in the parking meters. I remember they had a buzz that was fairly quiet but you would feel it in your pocket. Tourist shops are a possibility (should be some in your area?)

The bubbles etc - that's what worked for difficult child 3. Also what worked - we'd use "toilet time" to read a book together. As with all other reading together, we would discuss how we'ds read it and agree, but generally one of us would read the narrative while the other would do the dialogue. Since cherub isn't really reading well, maybe you could do this for books she already has half-memorised. Or you read it all, but do the voices, throw yourself into the characters. I found that this really boosted difficult child 3's reading ability plus without realising, it taught him to act and to add expression to his reading (unusual in autism - but he's a very expressive reader now). Dr Seuss books were great, we really got into the rhythm of them ("one thumb, two thumb" and "red fish, blue fish" were favourites for getting the rhythm).

Maybe you could approach the school and ask them, "What do we need to make this work? Who do we need to ask, and what magic words do we need to use, to access the support cherub needs? We have some really great strategies given to us and it wouldbe wonderful to turn this into the success I know it can be. Just think how good it would be for this school to have a contributing hand in this success."
If oyu need to, ask District Office or even state dept of ed what hoops you need to jump through. If you have anything in writing from the alphabet people who visited you, then use it. That could carry wnough extra weight to get the 'danger money' the aides are wanting. And once the money is coughed up, they will probably be supportive and enthusiastic.

Our local school had a hemiplegic wheelchair bound kid who needed toileting. There were a lot of hoops the school had to jump through because the parents insisted their child attent mainstream school, and by law that meant the local school HAD to take her. So they had to make it work, which also meant installnig ramps (paid for by Federal funding, administered by state, the school was not out of pocket).And the kid had several aides whose duties included toileting, cleaning her down afterwards etc. They even had a special toilet installed to cope. And THIS school was the same one who were not very hepful with difficult child 3. It was just a matter of what could be forced through and how much funding could be obtained. A clearly identified toileting problem, medically backed up as it now has been, should get this through now. difficult child 3 however was one of the invisibly disabled, hence local school's recalcitrance.

Great progress!

Marg

 

[therese005us]

I do get the carer allowance (62&#37 from Centrellink.
The alphabet people (I like that) are going back to the school to talk to them. I don't have to do anything now, but wait for it all to happen! and it will! We already have one AVT doing 3 hours a week with cherub.
I have been looking on ebay and other places for the watches and the aides already are looking and letting me know where to get the watch. I think a watch would be better, as cherub can feel grown up about it, and they are designed to have several alarm times (2 hourly or whatever); she wouldn't have the capacity to set it herself.

the reading is a good idea, but their idea is to make her independent, without any verbalising from me, so reading to her while she's in the loo is not an option.
I'll keep you posted on their ideas and the planning thereof.

 

[Christy]

Sounds like a good plan. I hope everything falls into place and the school year is a success. Also, I hope the vibrating watch and other ideas help Cherub to take responsibility for her toileting. This was an issue for my son as well and he would resist (ie, tantrum) sitting on the toilet in the morning for a few minutes before leaving for school. If we asked him to sit for five minutes. He would be tense and argue the whole time about how he didn't need to go. Normally he is not allowed to play with toys in the morning before school because time is limited and he has a hard time transitioning, but I started to allow him to play with a toy while sitting on the toilet. He loves to play with transformers and focusing on manipulating it helps him to relax and let nature take its course. It is also a great time to introduce a new book. My difficult child loves tarantulas, reptiles, snakes, etc and so a new science book with vivid photographs helped him pass the time on the toilet as well.

I hope things go as planned for your little one. Good luck!
Christy

 

[TerryJ2]

Neat that they came to the house, and that they had great ideas. You're off to a good start!

 

[Marguerite]

the reading is a good idea, but their idea is to make her independent, without any verbalising from me, so reading to her while she's in the loo is not an option.

In which case - surely reading as a team would fit in with that? Find a kids book with dialogue and ask her which she wants to read aloud - the dialogue or the other stuff. You take one, she takes the other, you sit side by side and share the book. She has to follow what you read so she knows when to get ready to read her turn. It's a way of making sure she IS following, and not just letting you read it all and letting it wash over her. This way ensures her involvement but it's a lot more fun than simple having her read aloud (unless she loves to read aloud). Because by sharing the task, you're modelling verbal expression for her and at the same time giving her confidence to try, and to read aloud. She can get caught up in the fun of it and not see it as so frightening. It's like walking across a narrow suspension bridge - while it may be best to try it on your own because then only YOU are responsible for any sway in the bridge, the first couple of crossings go better if it's someone larger and steady who is holding your hand. But you have to walk it and not get carried. As she gets confidence you let her walk in front and hold on to the rail instead of your hand. And os on.

Follow your instincts though. You know her and what you feel will work.

Marg

 

[therese005us]

Marg, Cherub can't read, but thanks for the suggestion.
Some of the things they have suggested, in order for her to take ownership of the problem are:

She gets to choose a 'blowing activity' toy such as a windmill, bubbles or whistle, which she can 'play with' while on the toilet. That way, she's doing her proper sitting, and doing her blowing on the hand to encourage sensory of the sphincter muscles, without it being a chore.

I can't see the novelty lasting, but I'm very willign to give it a go.

Other things, i am not allowed to verbally direct her, but have to use other ways of communicating, such as pointing to the special chart (yet to be set up) which will have characters, or makaton signs which outline the steps she has to take in order to complete the 'clean up' /toileting tasks.

I am not sure what is supposed to happen if she has an outright tantrum (like most of today at school/home) but there is probably a plan in progress for that too.

I will keep you all posted as I find out more strategies.

i did look online for vibrating watches last night.