My son is 2 and half and aware that he has a nappy and is becoming more aware of himself. If he could sit and walk I would be thinking about potty training. He is all there congnitivly. We are getting specialist seating for a potty but his tone increases when he goes - he does have laxitives for this. He doesn't like sitting he finds it uncomfortable. Any one else been there? Any tips? He has Spastic Diplegia.
Hi there, our girl has just turned 4 and is still not potty timed. We went through a stage about 6mths ago where she'd tell me or I'd notice she was doing a poo and I'd get her on the potty. But then somewhere along the way she decided she didn't want to do the potty thing anymore and would just sneak it into her nappy. (she suffers constipation too, I give her Lactulose every night to keep her sort of regular).
Leacie is very bright and verbal so I was disapointed when we took this backward step. I really do want her potty timed for kinder next year. We tried a special seat over the toilet but she was more comfortable on a cheap potty because she was leaning forward and her legs were high making it easier for her to open her bowels.
I'm still at a loss just how much she can read her toileting needs as it seems like she isn't even aware when she does wee's and doesn't realise she's doing a poo until it's actually coming out.
Does the seating your getting have his feet nice and raised? Would he require ankle straps maybe to stop him stiffening up. I know Leacie tends to straighten her legs when she goes so I put a step stool against her legs. 1. It holds her legs/feet back and 2. it gives her a small table to play on because she usually takes a while to get the deed done.
I wish you luck, if you do get any good advice I'd be more than eager to hear it. Because Leacie is so bright and verbal I think it will be embarrassing for her to still be using a nappy when she goes to kinder.
The seating is essentially a chair with a hole and the hole has a pot. Its raised off the floor and I can put his feet onto a raised board which adjusts. It also has a pummel which will kepp his legs apart - his raised tone makes them cross. I am in the UK and things like this are provided on our NHS system, we are alloceted an OT and they assess your needs and have an obligation to help. Whats the situation where you are? Can you have access to any help? In the UK alot of the equiptment comes from one company. They take a long time but its well thught out stuff.
As for laxitives, lactulose was not strong enough. My son is on a muscle stimulant. This is because all the tone in his legs is high and so any muscle around that area also tight - ie the ones controlling bowl movements. So a stimulant will relax those muscles, we saw an incredible improvement for him when he went on the meds. It doesn't however make me aware of when he might go.
Any more than that, when I get the chair I will let you know how I get on. My son too is verbal and alert and I want him, like you do for your daughter, to fit in like the others do.
I just wanted to update you as we now have our sons 'potty'. Its made by a specialist company called Leckey, they make alot of the CP equiptment we have in the UK. Its a small chair with arms and is a miniture commode. It has a soft back and I can put a cushion in insead of the commode part if I want to. I have done this as out boy seems to have funny phobias - one is now toilets - so if he gets used to the chair then hopefully I can change it when hes used to it and try again. A chair is good as it take our boy a while to do the deed too - even with the laxitives!
Do you have any equiptment made by them? Have you tried again? How are you getting along?
It doesn't have a foot rest though, but I know of companies who make ones which fit over the toilet and have feet holes. Hope this helps
Hi again, that's great you finally have your son's potty. We don't have any Leckey products but I did have a look at them online. I think I saw the potty you have for your son, it looks really good although I'm surprised it doesn't have a foot support. Leckey has some really great designs, I particularly like the little chairs, much nicer looking than the Kelly chair we have (and you can get pink, lol)
In Australia we have Aids and Equipment who deal with our needs, they can get items from all different suppliers and will give X amount of funding towards it, but then any gap funding we have to find ourselves. We have been lucky so far though we've managed to find charities that will cover any gaps.
Our commode/shower chair is called a Flamingo2 made by R82, we also have an R82 wheelchair for Aleacia, it's called a Panther. We have a Dynamic standing frame that looks similar to the one Leckey makes (but Leckey's is much nicer looking), then there's the Kelly chair by Mobility Plus, and we've just got a adjustable bench seat. What shocks me is the cost of these items, I just thank the Lord for funding because there is no way we'd be able to afford them on our own. Oh I almost forgot the Hart Walker, that alone was $12,000. Lucky for us the Lions club fully funded it, the cost is broken down to $6,000 for the walker and $6,000 for ongoing adjustments, repairs, parts etc. the walker should last her until she's 13.
It's funny, Aleacia's wheelchair is worth more than our car, lol.
Our girl has just gotten over a nasty virus/tonsilitis so she's not done much of anything for the last 2wks. But I do still hope to get her back to toilet timing. The year is just flying away and kinder is getting closer and closer.
I hope your boy gets over his phobia of the chair. He is still quite young so you've got a bit of time to play with. Thanks for the update
We have the Krabat Jockey by R82 and its done amazing things. His hips have loosened so much, although his shoulders are pulling in now so we have to watch that. We were going to have the flamingo but it was considered too expensive so we got the little seat.
His first seat / highchair was Leckey, a Squggles all the children with additional needs here seem to have them, I think because they are so adjstable and meet so many different needs.
Most equiptment is paid for on the NHS up to a limit. There is a budget for an area and that is then distributed among the children in that place. So areas where there is a higher number of children (the capital, London) for example, they won't get new or as dynamic equiptment as there are more children to share the money.
Keep me up to date with how the training goes, I'm sure she'll get there, could you order the Leckey? It might help as it could be taken to nursery?