So disability is something parents imagine.

[Jenkeywoo]

feeling a bit pissed off tonight so excuse typos etc. Went out to lunch today with my two best friends who I feel know and understand me better than any other friends. They were talking about my dd who is 17 months old, has hemiplegia, cp affecting her whole right side, cannot yet crawl or walk. It is mild but it does exist.

One reckons I shouldn't tell dd she has hemiplegia as she'll never know she has it and will be normal when she's grown up. - of course she will know she has hemiplegia, it is going to affect her in different ways for her whole life.

I mentioned that learning difficulties are something quite common in those with hemiplegia - other friend suggested that of my dd won't have any. (would be nice if we could be so certain). Also that those who do have learning difficulties don't actually, it's just that their parents labelled them as being disabled (which my dd isn't apparantely). So if I don't let my little girl be disabled, she won't be! there's a nice easy answer.

I tried to explain how it really is but do know what, after a minute I just gave up as it was clear that they know EVERYTHING about having a child with SN and I know nothing. I have not even dared mention that we've applied for DLA as I know they'll think it's some sort of ruse on my part. Just as another friend reacted when I mentioned that I have a homestart volunteer 'wow, that's cushy, I'd love to have someone look after my kids so I could get on with my ironing'.

We were then discussing potty training and they were both talking about children who were not fully trained at school age - they were talking about how disgusting it is that some children still 'shit their pants' - both are teachers fgs. I just thought, so here you are describing a child as disgusting when you have no idea of the problems that child may have.

Is it just me or is having a child with SN a totally polarising experience? It's like you suddenly live in a different world and see everything differently. I want to keep in touch with my friends and quite frankly I don't have any friends who do have a child with SN of any kind so what do I do? just try to avoid the topic? I know they were trying to help and reassure me but it really made me angry and a bit sad too

O.k, so now im feeling worried about Ds1, hemiplegia and still in nappies, starting full-time ms on Tuesday. I cannot believe teachers would have this attitude about children who still have problems with toileting. Who can we rely upon to look after our kids if we can't trust teachers?! Of course, you can't tar them all with the same brush, but are we kidding ourselves as parents when we expect to be able to rely on teachers to understand why our 5 year old still poo's in their nappy? Its just so plainly obvious isn't it that a sn child included in a ms class is nothing but a 'problem' that they havn't had proper training for and don't physically have the time to worry about because they are looking after 30 other kids. If ds1 didn't have a 1:1 (and a good one at that), I would have never considered it in a million years. I don't think people with disabilities will EVER be accepted and understood except for people who have had experiences with it first hand. I know something Jenk, if my 'friends' had said something like that in front of me knowing I had a sn child I would most deffinitely NOT be wanting to spend another second with them .

Sadly, I can quite believe that some teacher's have this attitude. You only need to look at the TES staffroom forum to see that there are some teachers seriously question the validity of conditions such as ADHD etc. Hopefully they are the minority.

DS3 is in nappies, we've tried (we were ordered to have him out by end of summer) but just can't get him there- we can 'drain' him over a toilet every half hour or so but a teacher cant do that, he'll have 50% 1-1 (we got extra on appeal) but imo until he can communicate a need to tpilet- possibly never- or be completely independent in his toileting then he'll be stuffed in MS and therefore he is starting at Easter

Peachey.....we have been trying (begging, pleading etc etc...) with ds1 to use the loo all holiday. We have had a break through this week though, I brought the old potty-chair thing down from the loft and he has done 3 poo's on it this week . While this is a massive breakthrough and such a relief, I cannot imagine him asking for the loo (before its too late) at school. His 1:1 takes him at break times, but he hasn't yet requested to go himself. He does not talk but can sign for the loo. The trouble is he can only use one arm and hand and could not get his trousers down or nappy off by himself.

Anyway, I am rambling now, just wanted to say that you feel like you will never get there, but it does happen. Mind you I had to invent a 'poo fairy' who flew in Ds1's ear and did some poo magic to make him go .

It can feel difficult and make you feel alone being mum to a SN child.

On a positive note I have met some great people and made some true friends that I would never have known if I had not got a SN son. I have also over time come to known who my friends really are.

On the MS toileting issue. There are increasing numbers of children going into mainstream school who need help with their personnal care needs. This help would be allocated to a TA / LSA and is now written into their contracts. Like all things it is very much down to the individual school how well they manage care needs.

jenkywoo, have you considered going back to teaching as an sn teacher, or maybe a specialist teacher for sn kids when dd is old enough, the experience you have or will have of sn issues cannot be taught on any training course and i think the teaching proffession needs peeps like you, that do understand, for the sake of all those of us who have to entrust are sn kids to ms, i honestly think you should think about a divertion rather than giving it up hun. as for the sn training, its an absolute disgrace, go change the lea's 1 attitude 1
at a time lol.
magsi, might have to pinch this poo fairy idea cos i am all out of idea's, we had nearly cracked it last yr, then the potty broke, refusal to use anything else for a long time, then a replacement potty for his chair arrived, in the meantime i had been trying him on the toilet, nothing now, completely back to square 1 cos of the confusion, i am gutted that i am gonna have 2 boys, in the same school still in nappies, i cant help but feel peeps are seriously gonna judge me on that, i so desperately wanted ds4 out of them before school.
regarding the peeps who stay around having specific sense of humours peach, have to say i agree, all of my friends have had some kind of struggle, i think i always attracted like minded survivors type of thing, and none have deserted me, thought there werent that many anyway lol, but have to say, all my friends also are pretty mad, so guess there is something in the sense of humour thing. also can relate peachy to your ds and his brightness, am glad i got ds3 diagnosed so soon or could have had same problems, as he too is exeptionally bright, and was told by his head at his review in may, that 'under normal circumstances they would have been thinking about gifted and talented' thank heavens they know its not normal circumstances.

Like the idea of a poo fairy, sadly ds3's understanding isn't high enough and we have pretty much missed the boat for signing according to SALT (on waiting list for too long)- but he only understands one operational word at a time- so put bowl in sink becomes bowl, iyswim.

I'm not that bothered about nappies- fortunately he's small and can fir in Junior ones still (we're not allowed alrger ones until he's 7 ), but the school is insisting that he's out of them, they won't allow his LSA to change them and expect us to come in- we won't. We're stroppy like that. They know that, I suspect its part of their plan to get him that SN place the LEA dont want him to have LOL

Peachy have you printed off that link from my website by surestart re mainstream and toiletting. They can't insisit. If he can't do it he can't and they'll have to get on with it.

Jenk hun I have no friends that I see with any regularity, they mostly seemed to think ds2's asd was catching, although I have 2 very good friends one is a psycholigist and travelling the world atm bless her she is single and very understanding. The other I see infrequently when i just need to get away have a drink and a laugh iyswim and talking about the children is forbidden, I am nobody's mum I am me lol. I wish I had someone I could chat to about it who wouldn't give silly comments like 'but he is a beautiful boy though', or 'he's very clever though'. We really must meet up. Email me hun, at keast we can undertsand each other.

Gess, because I got ill with the hyperemesis I didnt get the statement abck on time and they ratified it woithout my say so and won't look at it again, timed out or soemthing. They point blank refuse to include toileting in it, apaprently BAT (now retireed) assured them it was something DS3 was able for.

I think schoola re hanging on to this as Is aid, as a way of getting him into SEN school- but the ASD unit is hosted at another school, which ahs been ear marked for closure and as such nobody I know of ahs been offered a palce this year, SALT school wont accept him this year unless dry (actually neither will ASD which is a bit awful!).

But ahve that link from your site to wave at SENCO if she has issues. Or should I say, when.

Mummy2aaron- about teh catching bit- was out with them all yesterday, got stuck in a queue. DS3 quite good but lay down- thats all. I mentioned something liudly to Dh abot ASD (I usually do, 99% of the time poeple are OK then)- this silly lady went 'ugh'! and ran away LOL, as if she was going to catch it! Oh did we ROFL! And her poor Dh was pushed by her into her place- does she not like him then?

LOL

mum24boys.....you are welcome to borrow the poo fairy. She is great because she flys round (only mummys can see her!) and lands in ds1's ear and waves her magic poo want 5 times and says 'please make ds1 poo'. Although, ds1 has clicked onto this and now covers his ears and runs away from the potty-chair.......LOL. Actually, the last couple of days he has gone in his nappy, theres me thinking it was all over. I will have a word in her ear and tell her to fly over to your house .

yeah plz do hun, my ds4 is a little sod, he wont go in a really wet nappy, ie 1st thing in the morning, wont go on the potty, so eventually you give up, because he throws a complete wobbler and you cant cope 1st thing in the morning, so you put a fresh nappy on him, and guess what, give it 10-15 mins and change me mummy i pood, so he knows damn well what he is doing, i think the next step has to be serious bribery, i mean serious lol, but i defo will give the poo fairy a go, although i think she may have met her match in my stubborn little darling lol.

Lol Peachy. Some people are ridiculous. It's the not being invited to play or to parties that hurts and ds2 notices now. I have severed contact with a few old friends because of this and they should know better!!

You don't need it in the statement. Print out the info, write to the head of lifelong learning, copy to head of the school/anyone involved with your ds3/MP & local counsellors and state that you assume that his toiletting issues will not prevent him from accessing the most suitable school as per the advice from Sure Start and regulations in the DDA. And that should it interfere with his choice of school then you will have no option but to take it further.

Usually a thread and quoting some law at the LEA works - if it's something that won't cost them money. DS1 had nothing in his statement about toiletting when he went to ms but it was fine they just got on with it.

thread? threat I mean. Providing you point out the law/guidelines/best practice and tell them you take fuirther if necessary.

But write to the LEA and copy everyone in. Statementing officers need to be included in the letter as well.

Of course its better in the statement, but if its too late it's too late.

Threats to the LEa? Moi? never..... LOL