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Suspected asd in 7yr old ds1 & toilet problems!

(22 Posts)
PolterGoose Tue 10-Dec-13 11:16:34

Only your dh can decide about himself really.

TBH sometimes/often schools need a rocket up their backsides to do what they should be doing. Applying for a statement is a good way to show you're prepared to assert yourself even if you don't follow through.

lavenderpekins Tue 10-Dec-13 10:58:37

I think they'd be shocked by me doing that..! I do like his class teacher but I don't think the senco has much experience with asc.. Thanks for your answer to dla poltergoose :-) its interesting because actually ds has this thing about his coat that i just kind of forget possibly isn't neurotypical! He's worn the same version of his coat since reception from the same shop :-) but he doesn 't mind change of routines..? Do you think if dh was officially dx that would help? Ds school is 'good' but they have just been ofsteded so will look for the results - i'm not sure what other school options are tbh.. Only private .. Which might not necessarily be better?

PolterGoose Tue 10-Dec-13 10:45:39

You can and should apply for a statement yourself, see IPSEA for letter templates and guidance.

You could look at other schools.

lavenderpekins Tue 10-Dec-13 10:41:08

Anything else i can do you think?
Thanks so much for the advice so far!

lavenderpekins Tue 10-Dec-13 10:40:09

Feel like i've been in a fight - senco won't start the statementing process even though he's been on action plus since year 1. Just called the hospital and he's on a 7 month waiting list for stage 2 asc assesement. And because literacy is at 25th centile his one to one is stopping at school.. Thats the only bit of school that is a 'bit ok' his words.. Anything I can do do you think?

PolterGoose Tue 10-Dec-13 07:53:13

For me DLA helps financially, I am very limited in the number of hours I can work as ds would not cope with childcare/holiday care type thing. It does cost more having ds, it helps with the cost of his food (he's a food refuser on a very limited diet so I buy the best I can to make sure everything is as nutritionally dense as possible, also waste food trying to get him to try stuff), he is similar with clothes, sensory difficulties mean I often have to spend more on clothes and shoes and many items are refused (after I've removed labels and washed them to prepare them for him), to pay for books and workbooks to support his development, sensory equipment, supporting his special interests...

What it also does is provides official recognition that he has a disability. In reality that doesn't mean much but it makes me feel more confident asserting his rights or asking for adaptation or flexibility (which might just be using a 'disabled toilet' or when Tube staff stopped an escalator for us to walk down when ds had a meltdown in a tube station)

lavenderpekins Mon 09-Dec-13 22:31:05

Yes i think his presentation is often 'subtle'. I need to talk the talk but i feel like i don't really know where to start - he is very 'subtle' will look up that book poltergoose - thanks so much. Stupid question alert but what exactly would we gain by getting dla? Sorry for all the typos tired and i'm on my iphone!

PolterGoose Mon 09-Dec-13 22:14:46

Having to remind him 500 times to brush his teeth is exactly the sort of thing that qualifies him for DLA. It isn't based on diagnosis but needs. So, my ds is 10, I still have to hold his hand to cross a road and I have to remind him to go to the toilet and I have to wipe his bum. He needs encouragement to eat and to leave the house. We have to prepare to the n'th degree every trip or outing or change in routine. And so much more. It's only when I do the DLA form I remember how much I do and how much it's become our 'normal'.

My dp and me probably also have Aspergers. Sometimes it helps to understand where ds is coming from, sometimes I suspect we don't have the same expectations a more neuro-typical parent might have.

I found that ds's presentation could be quite subtle when he saw professionals, I read lots and made sure I could talk the talk, I knew how he fitted the dx criteria, I had to really persuade the first paed we saw to pursue assessment. Have you read Tony Attwood on Aspergers?

bialystockandbloom Mon 09-Dec-13 22:12:06

I was told by the paed (who diagnosed ds), the SALT, and nursery senco that ds wouldn't get a statement either... he has 20 hours a week TA. Yes you can ask them to get the ball rolling, talk to them at your meeting tomorrow.

lavenderpekins Mon 09-Dec-13 22:05:36

Oh and yes there's probably always been a level of anxiety around school loos..

lavenderpekins Mon 09-Dec-13 22:03:27

He's been on action plus since about yr 1 stockandbloom can i just demand from the senco tomorrow (have a booked meeting) the statement process to start?? I was told by his senco at his infants school that he'd never get a statement. He's not 'bad' enough.. Her words..
My dh has almost certainly got Aspergers.

lavenderpekins Mon 09-Dec-13 21:57:57

Thanks PolterGoose we wouldn't be illegible for DLA surely until there is a dx? Yes the assessment we're currently waiting for is from the hospital - so seeing a team of doctors etc for a full screening.. He was observed at the end of year two by two doctors but the report was so vague and they felt he was 'ok'. Luckily a really nice dr got back in touch after ds's new yr 3 teacher filled out a questionnaire.
I find it incredibly difficult to say what he's 'like'. However I sippose watching his probable neurotypical siblings grow older its becoming more apparent..
Main prob at home is he won't do simple tasks like beushing his teeth unless i remind him 500 times and touch his shoulder to draw him into me. And i feel i've always been bis sort of 'translator' for the world. He is well liked by all who know him however..

bialystockandbloom Mon 09-Dec-13 21:49:54

My ds would withhold all day at nursery, reception and part of Y1. Ended up with bladder infection, and couple of soiling incidents when he just couldn't hold it. Also affected his concentration, as you can imagine being desperate to go to the loo would do.

In his case (he has HF autism) he was really anxious about the school toilets. He hated the smell and the noise (of flush, of the pipes, of other children) more than the process of actually going, as he was fine at home (after lots of work when much younger). It took a process of gradual acclimatisation to them, step-by-step, with rewards for every small step he'd take. Eg first his TA made the loo a 'fun' place (eg stickers on the wall), and just going into the loo = reward. Then spending 1 minute in there = reward. Then sitting on loo (with trousers on) = reward. Etc etc gradually building up to actually going. Then repeat process for flushing. The whole thing took months and months, and lots of patience from his TA and our team.

I wonder whether it's anxiety about the toilets with your ds too? Like yours, mine still avoids using the school loo for poo if he can, even now, and will go almost as soon as he gets home. His body has probably got into this rhythm now, so maybe because you went to the park rather than home this is why it happened?

Are school providing any support for him?

While you're waiting for assessment (from Child Development paed?) have they talked to you about applying for a statement? If there've been concerns since he was in pre-school I'd think this would be justified.

PolterGoose Mon 09-Dec-13 21:38:30

Disability Living Allowance - excellent guide here

I really noticed the change just after my ds started juniors, others here have too. There is possibly a testosterone surge in boys at about this age which can exacerbate any difficulties. My ds is 10.6 now and has a primary dx of Aspergers.

EP's can't usually dx ASDs, you really need to see your GP and get referred to whatever your local arrangements are, here it was direct to developmental paed, some areas it is CAMHS, community paed or child development centre.

How is he at school? and home?

lavenderpekins Mon 09-Dec-13 21:30:29

coppertop He's extremely regular same time everyday after school but yes bursting by the time we get home. He 's never wanted to ask to go to the loo at school. Just thought today it would be nice to go to the park - i've got 2 other dc's..

lavenderpekins Mon 09-Dec-13 21:27:10

School seem to be on it and a letter has been sent to his new junior school asking he is also assessed by ed phyc. Because of dyslexic tendencies.
What is DLA?

coppertop Mon 09-Dec-13 21:26:15

It sounds like it might have been caused by the 'overflow' that sometimes comes with constipation. Lactulose can really help with this.

lavenderpekins Mon 09-Dec-13 21:23:02

Thanks so much for the replies both of you. You're right I really need to keep making a note of these things.. A couple of weeks ago he soiled himself in the car :-( awful!
There's been a large Q mark ever since preschool.. Hoping we get the assessment date soon..
Thats really interesting about the gap widening a 7 poltergoose did this happen for dc?

PolterGoose Mon 09-Dec-13 21:11:03

Hi lavender (((hugs))) and flowers

Have you done any reading on ASD? What's your thoughts? It's really common for developmental conditions like ASDs to become much more noticeable at around 7, it's like the gap suddenly widens between our kids and their typical peers.

It is really worth making notes when you read stuff, keep a diary of ds's behaviour and video what he's like at home, especially if it's different to his school behaviour.

Is he getting any support at school? Is the assessment through your GP?

Are you aware you can apply for DLA?

Ineedmorepatience Mon 09-Dec-13 21:10:20

Ooops advice blush

Ineedmorepatience Mon 09-Dec-13 21:08:58

Hi lavender and welcome to the board.

Does your Ds struggle with constipation? It is really common and can cause soiling problems.

Also sensory issues around using toilets away from home can be a big problem.

You will get lots of advise from the lovely people on this board, stick around smile

lavenderpekins Mon 09-Dec-13 21:03:01

Hi there i'm at a complete loss.. :-( Number two accident today after school in the park - he didn't tell me he needed the loo just went off for a while in the bushes..
School suspects possible asd - we're waiting for an assesment date..

Thanks so much for any thoughts - feeling quite upset by it :-(

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