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DD 4yrs - possible aspergers & poo problems

(22 Posts)
ConstantCraving Fri 18-Oct-13 21:06:16

My DD may have Aspergers - she is 4 years old tomorrow and has only started nursery this term, but they have already spotted that she is very different. We had thought she was just quirky, but they feel there may be something more... and are going to ask for an assessment. She has lots of issues - food refusal, social difficulties, lack of eye contact, fine motor skills are difficult, and she is highly anxious about all sorts of things - but is loving, funny and imaginative. Recently we have been trying to tackle her refusal to poo in the loo - she still waits til night time when she has a pull up on and then goes. She is fine with wees. Can anyone advise how we can help her move onto the loo. we've tried bribery (with big bribes!), 'poo goes to pooland' and reward charts - with no luck. We were just going to go cold turkey and get rid of the pull ups - but she has been so stressed about it that I'm not sure that would be a good idea now... she also suffers fro constipation for which she is on movicol. Any ideas welcomed!

PolterGoose Fri 18-Oct-13 23:29:12

Honestly, unless its a big problem I'd leave it and concentrate efforts on stuff like social skills and motor skills. A child can only learn so much at any time and its worth thinking about what's most important, pooing at home once a day in a pull up isn't affecting her life, the other things do. I'm sure it feels like a really important thing, but many of our kids with ASDs were late to toilet train and it could take you ages and be stressy for you both.

Sorry if that sounds dismissive, it's not mean to be, life for any kid with an ASD is hard enough, I just wouldn't make it harder right now smile

ConstantCraving Sat 19-Oct-13 19:33:37

No not dismissive - what I needed to hear. She was so worried about her birthday and being 4years old that she couldn't sleep last night sad. That alone made us decide to back off on the loo thing and just focus on helping her deal with nursery - which she luckily loves going to - despite not really engaging with anyone. Guess we will have to wait and see what (if any) diagnosis she gets - still coming to terms with that..

PolterGoose Sat 19-Oct-13 19:48:31

Constant I remember when ds was that age, before his diagnosis, those were by far the hardest years. It's great that she loves nursery and hopefully you can plan a good transition to primary school. We had an early years Senco (I think that's what she was, she came from the LA to advise ds's private nursery confused) and she was brilliant at arranging stuff to smooth ds's path into school. Keep posting, it can be very lonely dealing with it all flowers

addictedtolatte Sat 19-Oct-13 20:08:15

I agree with poltergoose. It's good that it's being recognised early it will give you a chance to learn what it's like to live in her world. My nephew is 10 and is in the final stages of being statemented. He is very different from his friends but they have learnt to understand him what lovely friends they are.

ConstantCraving Sat 19-Oct-13 21:52:43

Thank you both. I know we are lucky that nursery have raised this - they just want to know how to help her, as do we. They are very, very good with her and she often gets 1:1 support. They have also said she is way ahead in reading and numeracy. I just struggle with her eating (or lack of it), the poo difficulty and her resistance to anything new - even fun stuff like outings. I realised early that she struggled with social events and she is easily overwhelmed by things - shopping centres, fetes, playgroup but thought she was just highly sensitive and had a quieter more reserved personality. Before Aspergers was raised I felt guilty that she hadn't progressed more in some areas, and now I feel guilty for pushing her!

PolterGoose Sat 19-Oct-13 21:59:05

Don't feel guilty, if we don't gently push our children they'd never do anything grin

What I've found though is that we can only really push one thing at a time, I also find that ds will go though horrendous periods where it all feels a horrible mess and then he will emerge with some new skill or some sort of developmental spurt.

Eating has always been a problem here, ds has a very limited diet but seems to thrive, he has seen a dietician and has no major deficits so that made me feel better.

We can't go anywhere busy, we choose times of the day and year when places are less busy, for example, we always do a zoo on Boxing Day. Internet shopping is a godsend.

ConstantCraving Sat 19-Oct-13 22:09:30

Poltergoose I think that's been the problem this last month for DD. When she first started nursery they asked us to help her use an open cup as she only drinks from a closed sippy cup so had been trying to get her to do that, alongside the loo - and not realising how much effort it was taking her just to be in the nursery environment. Hence now just helping her manage that for the next few months. Food is always a worry as her diet is limited (and she can't / won't use cutlery other than a spoon), but it has been worse and now i'm just grateful if she eats - even if it is only cereal or bread! Zoo on boxing day is an excellent idea!

PolterGoose Sat 19-Oct-13 22:15:19

Constant ds is 10.5 and can still only use a spoon, but he's never eaten anything that needs proper cutlery so it's seemed pointless trying!

addictedtolatte Sat 19-Oct-13 22:23:52

I wouldn't worry too much about the food issue my nephew has survived on dry white bread shock and he's 10 now and thriving he hardly ever gets ill. My sister does give him liquid vits to supplement.

It's interesting about the reading and numeracy in asd children. They seem to excell. My nephew was at reading age 14 at age 7 and numeracy capability of a 14 year old.

Kyrptonite Sun 20-Oct-13 01:02:38

Oh gosh this sounds just like DS (also 4). The GP referred him to CAMHS who wouldn't assess him so now I'm hoping that school pick up on it. He also poos himself daily so he has a paediatrician appointment in a fortnight to try and get to the bottom of it. He was on movicol which helped then once we got this appointment the GP took him off it and we are back to square one.

My DS2 (ASD) who is now 14, still has toiletting issues over pooing. I really, really stressed about it when he was 3,4,5 etc. He couldn't hold it and would daily poo his pants. He'd been dry since he was 2 1/2, pre DX and hadn't worn a nappy or pull ups since then as I was desperately trying to get him into a playgroup/preschool to help him with his social skills. In retrospect I wish I'd completely backed off, returned to pull-ups and not given him a complex about pooing. He's never been constipated but he's hyposensitive and doesn't/didn't recognise the sensation. Even now he poos a 'skid mark' before realising he needs the toilet.

So, in summary, I give you permission wink to stop worrying about the pooing. It's not affecting her life badly, or yours, she's able to control it to a socially acceptable time. Don't make it a big deal (as I did blush ) and concentrate on other things.

Where are you on getting her a DX? Have you seen/are you on a waiting list to see a developmental Paed, or whatever your area's DX pathway uses, children's centre, CAMHS etc?

PolterGoose Sun 20-Oct-13 11:57:25

Ellen hindsight is a wonderful thing grin

Isn't it? grin Which is why I posted, perhaps someone can learn from my mistakes.

PolterGoose Sun 20-Oct-13 12:17:42

Ellen that's the logic behind most of my posts! If I knew then what I know now...

ConstantCraving Sun 20-Oct-13 13:59:22

Thanks Ellen - it does help to hear that she's not the only one to do this and that it is ok not to push the poo issue.We are at the very very beginning re: diagnosis. We kept her out of nursery til September as she hated playgroup environment and we thought she was highly sensitive. So its only been since sept when nursery became worried that we began to seriously consider aspergers (though it had crossed my mind before - mainly as whenever I've posted on MN about her food, potty or insistence that she is a real chicken) someone has said she sounds like could be aspergers...). I still wonder how much is lack of practice with the social side of things - but even so there seem to be many other ticks in the box. Nursery have sent off to the SEN dept for someone to come and observe her there - but have warned that an actual diagnosis could take a long time...
Addicted thank you too - food really stresses me out, especially as everyone else's children seem to eat. People seem to think she's fussy and I'm weak - but she has genuine refusal, I can't even get he to try an ice cream.. or chocolate! I also give the liquid vitamins.

addictedtolatte Sun 20-Oct-13 16:11:08

I know what you mean about people assuming there fussy eaters. My nephew gets genuinely stressed and anxious when pressurised by other people to eat. He won't eat at all in school but seems to get by :-( hope you get support soon and trust me aspergers is not all bad :-)

DayBurner Mon 21-Oct-13 11:35:13

Daily poo in pants (often more than once) - tick

Just learning to use an open cup - tick

Fussy eater - tick

Only uses a spoon (and specific ones for specific meals) - tick

Only eats from a bowl, not a plate, and food must be a mushy texture.

Won't try ice cream or chocolate - tick

My 3 and a half year old DS has Aspergers and sounds quite similar to your DD. We've just had the added joy of Pre-School Booster jabs setting him back with his eating and tooth brushing.

Anyway, we just go with it all. Buy cheap pants and chuck them rather than soaking and washing etc. We're about 3 months in to potty training and I'm expecting to be binning pants for some time yet.

He's made real progress with drinking from the open cup (and it doesn't always have to be the same one - yippee!)

The EarlyBird course from the National Autistic Society was useful at giving us some perspective about the fussy eating. They told us that if the child was growing well and getting enough "fuel" then it was ok to go with the fussiness. I guess the using a spoon thing isn't a problem if it eases the stress of mealtimes. He didn't use to bite with his front teeth, so had to have everything in small pieces, but now does bite and has a sandwich cut into 4 rather that 16, will bite a biscuit etc. Sometimes, I feel with our son we need to focus on just one thing and expect it to take ages, and it will happen in the end (if we're lucky).

Also, our Occupational Therapist suggested having a "learning bowl" where they have exactly what they want to eat on their plate, but you have a separate bowl of other food (maybe take a spoonful out every time you cook something and sick it in the freezer to have as play food)to play with/poke/stir/wiggle your fingers in/whatever to get them used to different colours and textures with no pressure to eat it at all. Hopefully, over time you can persuade them to try new things (disclaimer: haven't tried this too much yet, too much else going on!)

Wishing you all the best,

DB x

ConstantCraving Mon 21-Oct-13 20:21:18

Thanks DB - all this is so new and I'm not sure what to focus on first and how to help her. Your son does sound similar to DD. I'll look at the Earlybird course. My DD also doesn't bite - so we are still cutting things up for her - but today all she had dinner was yogurt. I tell myself not to stress but find it so hard not to! she is also very unsettled still about nursery which seems to have exacerbated the other areas - so food is worse than usual, poo is worse and her irrational fears (open doors at the moment) are worse. Meltdown in Boots today because a door opened unexpectedly behind the counter - she was genuinely scared sad and the other shoppers tutt - tutting didn't help.

ilikemysleep Tue 22-Oct-13 13:06:08

My DD (brother has aspergers, she def has communication issues, not sure yet if she's an aspie) had poo problems, lots of anxiety. What really helped with her was a description of the physical act. She said she didn't know what to do so we said 'you sit on the toilet and squeeze in your tummy like this 'nnnnn' and then the poo just drops out of your bottom into the toilet', and then she said 'how will I know I need a poo?' and I said 'You get a funny feeling in your tummy, like a bit achey'. She thought this through for a few days and eventually took herself to the potty one night with no prompting or battling, just decided it was time. She hasn't had an accident since.

GrippingArms Tue 22-Oct-13 13:22:57

DD - 6yrs - ASD has lots of toilet issues, we're just coming out of a really awful time with chronic constipation <fingers crossed>

when she is anxious, she loses the urge/feeling of needing to go to the toilet. at the height of her anxiety she loses urinary continence, and now has started poo-holding too

over the past couple of months we have tried medical intervention (lactulose etc) and while that is helping, what has really helped is not letting rely on her body to tell her when it's time to go (this was causing leakage rather than emptying her bowels) but we now schedule 'poo time' where she has to sit on the toilet for about 10 minutes at the same time every to empty her bowels

it wasn't until we started to do this that we realised she actually found sitting down difficult!

she hates her feet 'dangling' the seat is cold and uncomfortable, the cistern 'pops' and 'drips' inside, the room echoes, if the window is open then the wind spooks her...then if there's a smell...

i have literally had to teach her how to sit long enough to let her body do it's natural thing! we have a step with a book on it to keep her feet flat, i warm the bathroom up, hang a soft towel near her so she can cover her face if she wants to, she has headphones on with a story...it's all in a day's work grin

DD hates biting into food, i still cut things up small enough for her to stab at with a fork, or sandwiches take 2/3 bites and her diet is very limited.

ConstantCraving Tue 22-Oct-13 20:48:03

Hi Gripping - the actual loo is part of the problem for my DD too, just like your DD its too cold in the room, it smells (and if I clean it first that's worse cos she hates the bleach / loo cleaner smell too!) etc. I have just given her a large scarf to put round her and over her head when she's on the loo which is helping her sit longer - also have scented candle in the room which seems to help.
Ilike the problem with pooing is she does know when she needs to go, but resists it. She can't do this for long as she also suffers chronic constipation and is on movicol. She only feels comfy pooing standing or crouching leaning forwards - so not compatible with the loo! As advised by others here I'm backing off on it and just letting her use the pull up at night for the moment while we let her adjust to nursery. One thing at a time seems to be the mantra.

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