Hypermobility, starting school and toilet training - possibly long!

[Charleylarlie]

Please could somebody advise me. I'm getting very anxious about DS1 starting school. He has hypermobility and we're still only just cracking toilet training - I feel we have a way to go yet.

He's been going to the preschool attached to his school, so he knows the school and the staff are aware of his problems. I shall phone them the day before he starts to make update them, but could do with some words of wisdom in the meantime.

DS1 a bright, friendly boy, but there are certain things he struggles with. He can't run or jump, and he is only just starting to peddle (on flat or downhill surfaces). He can't hold a pencil easily (I've ordered a selection of pencil grippers for him to try), and he struggles with cutlery and dressing/undressing.

The main issue at the moment is toilet training. We tried unsuccessfully a few times during the last year with no success, but we started to get somewhere during the last half-term of pre-school (at home only, not the kind of nursery where they had the time to follow individual potty training, it was pull-ups/nappy unless fully trained).

So, the plan for this summer was potty training, and he's actually doing really well. He knows when he needs to pee and he goes to use either his potty or the toilet. We've had a few accidents, but we've ditched he nappies in daytime.

But - he cannot get his head around the logistics of the whole thing. He can get himself on the toilet and peeing if he is wearing only pants (shorts or trousers, however loose, are still a problem) though he tends to pee all over the seat and floor when I'm not there to remind him or help. He gets annoyed when he can't pull the loo roll properly. He does wipe, but not very well, and he keeps forgetting to pull his pants up afterwards, even if I am there to remind him. It's the pulling up pants part that he seems to struggle with the most, and this is just with pants. Wearing shorts at home will be the next step.

I have ONE WEEK to get him to do this all properly, including flushing and washing hands (he tries to refuse the hand washing part, but I think this is because he can't reach the taps on our sink properly - I think he'll be okay at school, providing the taps aren't too stiff for him).

Poos are another matter entirely. He usually only poos at home (I think he only had 3 poos at nursery last year), but the school day is longer. IF he is in the living room, or with us, he will go and poo in his potty or the toilet, but anywhere where there is no adult in the vicinity and he will just go in his pants. It doesn't help that he only goes every 3 days, so we have few opportunities to train. There is no way at the moment he'd be able to wipe himself adequately.

The school have said that I can sign something that gives them permission to allow him in pull ups. I feel he's beyond pull ups now that he's partially trained, though I don't think I can really expect a teacher/TA to accompany him each time he goes.

DS1 is really excited about school and seeing all his friends again. I don't want to have to keep him at home, but I don't think a nappy is the answer. Or is it?

I feel like a crap parent, because everybody says being able to dress, use cutlery and go to the toilet are THE MOST IMPORTANT THINGS to teach your child who's starting school. I know it's not really my fault, but I still feel bad, and worry about being judged as lazy.

Has anybody been in a similar situation? What did you do? How did it all work out?

Apologies for long post, didn't really know how else to explain it. Would just like some words of support, really. I'm getting a bit frazzled, and don't want Ds1 picking up on it.

Firstly, you need to give yourself a bit of a break and realise what a great job you have done so far. Potty training can be so difficult, I'm in the process with my DS and although he doesn't have any issues he is certainly struggling with pulling pants up, washing hands and remembering the whole 'routine'. It doesn't matter how much you do if they're simply not ready, until they're ready and willing nothing will make a difference. It sounds like your DS is right at the beginning of that and you've managed to hit the right window of opportunity.

I'm not sure what implications the hypermobility has as I'm unfamiliar with what it is, so apologies if there is something I'm not taking into account with that. The fact that when your DS feels the urge to go he heads to the potty is fantastic, it takes a while for the sensation to be recognised every time so to be having a few misses at this point is totally normal. I'd say you absolutely can expect an adult to accompany your DS to the toilet for the first few weeks, he is aware of when he needs to go and it's the routine bit he struggles with. I think school would be hard pushed to find a new starter who could manage the flushing and washing hands straight off, I'm sure most schools would be willing to do an induction for using the toilet to show those who are unsure just how it all works. With school children often find things much more automatic because everything is exactly the same all the time, your DS may actually find it easier to remember what to do because that's just what they do there IYKWIM?

With regards to poos, it sounds like a confidence thing which is exactly like my DS - sometimes he takes himself off to the potty alone, other times he tells me and then other times he just goes in his pants. He does forget that he can't do that any more but he also becomes quite anxious about using the potty or the toilet, although it's not ideal I think the school have to support your DS in overcoming this and putting him in pull ups really isn't the way to do this. That would be teaching him to poo in his pants and that he doesn't have to get used to using the toilet. Using the school toilet might actually be the thing that gets him used to going on the toilet - it's what everyone else is doing and it's far easier to gain confidence when others are doing it too. School has to have a potty training policy, and this will go far beyond just putting them in pull ups and will probably involve a plan devised between you and his teacher and/or TA.

I think you need a meeting with school to ensure that you are comfortable with the support that your DS will receive. If they do it correctly then a few weeks is all it will take. You can't expect it all to happen in the next week although it actually might, it just depends on his ready your DS is. Take some pressure off yourself, it's a lot for children to learn all at once. Yes, those things are important but nurturing the confidence is far more important at this stage, once your DS is confident then it's just a case of practice makes perfect. He's done brilliantly so far, he's so very nearly there. I hope it all works out sooner rather than later.

He won't be the only one who is struggling.
My son is going into year 3. He has hypermobilty, asd, adhd and dyspraxia. He struggles to use cutlery and get himself dressed. When he started school he had quite a few accidents. A good school will support your child.

I think you should post on the SN boards as there are quite a few children on there with hypermobility issues who are in nappies or training at school. I have to say it may not take a few weeks - it took my ds two years; he 'got it' when he was five. He has dyspraxia and some hypermobility.

You need to have a meeting with the school SENCO and school nurse about this. It is perfectly reasonable to expect him to be taken to the toilet by a TA (not teacher) if it is necessary. Can he hold on for reasonable periods? It would be easier if then school had a timetable e.g. I asked them to make sure my ds went at break, lunch and before his taxi home. You don't have to put him back in pull ups but you will have to provide quite a bit of spare clothing! As far as clothing is concerned - go with just elasticated trousers. I also found the 'plus size' versions were looser and easier to pull up an down. I would also put up a story board in your loo to remind him what he needs to do at each stage (pull down pants, sit down, wipe bum etc.)

Is he getting occupational therapy (OT) support? If not get him referred for it now. Part of my ds OT is focused on self-care skills such as getting dressed as well as holding pencils, cutlery and other fine and gross motor stuff. The school also need to be aware of and appropriately deal with the extra fatigue your ds will feel compared to other children.

Thanks for the replies.

I did wonder whether the SN board might be a better place to ask, blaeberry. I'll see how we get on over the weekend and maybe ask to move this there then. I think we'll send him in big, elasticated trousers to start with and take it from there.

The school has been really good. We had a meeting just before the end of term, and agreed to see how DS1 did over the summer. I think they'll see how he gets on to start with before referring to OT, though I think it might be a possibility.

Thanks, orange and blink. Sometimes I forget that the other kids struggle too, even without additional issues. DS1 does get the urge to go, and does take himself to the toilet, though I do still prompt occasionally, just in case. He's only had two proper accidents this week, and one of those was because he tripped over on his way to the loo. and he definitely knows he needs to go to the toilet to have a poo, though I'm certain if he needs one at school he'll be too shy to either ask or go. I'm kind of hoping he'll poo at home most of the time.

Thanks for your reassurance, Blink. I wasn't sure how much help was reasonable to expect of teachers/TAs in terms of prompting and help with dressing etc. I think you're right about nappies being a step back, and that actually what he needs to do is practice at school.

I shall see how we get on over the weekend, but will phone the school before he starts, as I don't want to land them with it on the first day. He's been really good today, and he's been wearing shorts as well as pants. I suspect I may be just having a last minute panic, and am worrying about issues that may well be sortable at school.

I do hope you are accessing all the support available. A dear friend's son was recently diagnosed with hypermobility at the age of 10 after years of struggling with various things - his life has changed completely now due to occupational therapy, support from the school and more recently an operation to help his bowel function properly. Good luck!

My dd (5) has ds and part of that is hypotonia. She has a statement and extra support. She isn't as far on as your ds, but we had input from OT and they provided a frame and special steps at home and at school to help her confidently sit down on the loo. Hopefully, she will eventually not need them any more. We have regular meetings with the SENDCO and have a toileting plan that we follow at home and at school. She has nappies on prescription, and through them we had a play specialist come with charts and pictures e.g. going to the loo, sitting down, doing a wee etc. to help with the various steps. We are also under the continence nurse.

The material we were given was from PROMOCON and One Step at a Time, if that helps. Sounds like your ds is doing really well!

Thanks lanbro and quirky. OT has definitely been mentioned, and I think may be of some use for him, though no referral has been made just yet. I'm hoping pencil grips will help with the writing, and we're going for clothes that aren't too fiddly. Other than that, we're trying to build up his fine motor skills, which I hope will help with the toilet training too. I'll definitely be keeping on the ball with it all, so will push for a referral if he seems to be struggling (though school have been monitoring him too, so hope they'll keep me in the loop with any concerns).

Thanks for the advice.

Quick word of warning - waiting lists for OT can be long.

OT referrals take ages. It's best to get on the waiting list as soon as possible. NHS OT hasnt been that useful for my son. A private OT assessed him and made recommendations which the school followed - really helped.

Thanks, I'll get the ball rolling asap.

Yy OT can take ages! We were with OT as part of pre-school provision and signed off as started school and needed to be referred again, it took 6+ months. Ridiculous system, as obviously SN/disabled children don't need extra help when they start mainstream school .

I would get as much help as possible, are you under the HV? We have a Specialist HV here at the CDU who really chased up our referral. If not maybe community nurse or paed.