dla, nappies, absonding, consultants letter...

[GlastonburyGoddess]

Ok, few things..

can anyone advise me about bigger(than size 6) nappies/pullups, where can i find them? are they expensive? ds pullups are literally cutting into his skin by the time he gets up in the mornings and hes starting to get sore around his sides. Have thought about taking pullups away but hes showing no sign of waking up with drier pullups, he wakes and they are massive and full. any advice/tips?

dla, have heard from a few people online who had applied before dx, has anyone here done that with any success? I have filled it out and am sat here wondering wether to send, guessing the worst they can say is no and reapply once dx?

ds is a runner, hes becoming more and more devious/clever? about finding the keys, and hes gone, think Im going to have to get a clip to attatch them to my jeans. again, any tips/advice?

Saw consultant back in nov, was told we would see her again in may, have since seen ed psyh whos also observed ds in class. last week had letter saying "having recieved all the info back from school and yourselves regarding your ds and his behaviour after reviewing the info i feel it would be more appropriate for his follow up to be with one of the consultants who has a special interest in children with behavioral difficulties. i have therefor cancelled your appt in may and made appt with X on 23 june
I apolgise for the wait but feel your concerns will be better met at this clinic.

WTF? what does that mean. no explantion, no information on their thoughts. HV has read letter and feels this may be a fob off, am feeling the same. Cant beleive we've got to wait till the end of june may was long anough a wait, but june

anyone else had similar letters?

hi glastonbury,

you can get nappies free, your HV should be able to refer you to the scheme.

re the Ed Psych,it does seem like she is putting all the onus on the consultant when she should also be looking at ways to help him in school,perhaps writing a letter to her thanking her for referring him but also saying you have concerns about school and are wondering how they are going to be adressed and what help he is going to receive?

DD is a runner,we,ve just had extra big bolts fitted on the doors and locks on all the windows,fortunately shes only small and cant reach the keys, tho the idea of yours about attaching them to a clip sounds good and ill be looking to do that as she gets older/bigger.

yes apply for DLA,as your son has difficulties with toileting and is under a consultant,its there for children like ours who require that extra help and attention.

HTH if you have any other questions,please ask there are a few of us on here with children with diffculties like your son,both of mine are ASD and i found this board a godsend.

Sorry, i typed that so fast i didnt check it what i was writing, what i meant was that we were initially seen by the consultant(who at the first appt said" i dont think theres anything really wrong with him?!)and told connors scales would be sent out and that we see her again in may. ed psych only became involved when I asked school directly for their help-after spending day after day since sept chasing ds through the school grounds and manhandling him into school. ed psych has seen us twice and the appt before easter confessed that when she was called in she didnt know why (ds was managing to hold himself togther at school for the first term up till about december) but that at her second appt she had some concerns. Im woried because school got and filled out connors scale before xmas when he was doing ok once in school. school are now experiencing some of the behaviours im getting 24/7 at home so their answers are probably significantly different now to what they were.

the whole situation is exhausting and Im tired of profs raising eyebrows as though they dont beleive what im saying, sometimes ds can hold himself together well and the rest of the time hes bloomin hard work. I feel like dropping him round their house for a few weeks...

will get onto the HV about the nappies, although not sure how much help she'll be as she doesnt sound like shes had much experience with sn children and relatively new as a HV

Glastonbury - Hi. I'm mum to Ds with ASD, nearly 6

We got DLA before diagnosis, so go for it.

nappies - my DS grew out of pull ups and they leaked everywhere so we switched to huggies pyjama pants - very expensive but much better as they are higher waisted. These never leaked. You can get them in the supermarket, age 4-7, or up to age 12. My DS also never showed signs of getting dry, and his nappies were round his knees at times. I never pressurised him and it just happened overnight when he was 5.5. A week of dry nappies, and then he refused to wear them as they were too crunchy (obviously they felt less crunchy when he was weeing in them).

Running - we have to lock our doors and hide the keys. All windows are also locked. garden gates have big bolt and a lock, but DS still tries to climb over. Fortunately he is not good at climbing. No real advice.

Can you phone the Ed Psych and ask for clarification? Have you had a full report/debrief about her observations? I'd be cross that she had acted without consulting you. IME the profesionals are crap at keeping parents in the loop.

the ed psych HAS told me about her observations. its the consultant pead that isnt letting on whats going on, we've no idea what theyre doing and why we are going to see the other consultant other than "your needs will be better met with X" the consultant is the one school, ed psych and us have been sending info to but theyre not being open as to what theyre thinking/what their conculsion is. tnh honest im scared shitless that we'll go in june to the appt and they'll say, theres nothing wrong and send us away.

hello glas, my ds gets dla, pre dx, so yes do apply! my ds's early years support teacher gave me a lot of help filling in the form, and I think that did help the application.. Do you know anyone who can help you with the form?

What age is your ds? I used lidl pull ups(largest size) on my ds until he was 4.6-ish, they are very stretchy, have good capacity, are cheap and never leaked - other large size pull ups/nappies seemed smaller than lidl ones - might be worth a try?

hes 5.2 but 99th centile for height and weight so more sized like a 6-7yr old, hes wees for england in the night, will try lidl. was that the optional page you got the teacher to fill in?

I am not sure, I will have a look at the form tomorrow(make a copy of yours), she really helped make sure I got the language/detail right - it was very hard (I was still in denial).