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

[TotalChaos]

sorry you had such a rotten experience with your friends. I think people do try and minimise it, as they mistakenly think they are doing you a favour by reassuring you - a friend recently suggested that DS had problems with his speech because he was a big boy(!) I think it's quite abysmal that these teachers should have so little understanding of SN/LDs. In some ways my uni friends without kids have been better to talk to - they don't have pre-conceptions, and they seem to think that if I have concerns, that I am a sensible person so they respect how I feel.

[used2bthin]

My Dad said something similar when DD was about 3 months and i went to a support group for parents of kids with special needs. He said its about how you see her and don't want to label her as it will affect how she sees herself. I was upset cos was feeling so alone and just wanted to meet other people who had been through the distress I was going through so it was something for me not DD. We just got a new pushchair paid for by the carers centre and annoyingly I feel I shouldnt tell too many people as aome I mentioned that sort of thing to seem to have the attitude you mentioned re your home start lady(I had mine come today it was bliss!). I mean when all is said and done should they not just be gratefulthey don't NEED the extra support that we do. It makes me feel like saying would you swap then? Have your child have my DD's condition? Of course they wouldn't!

[used2bthin]

Despite my ranting actually I agree with TC that people are trying to reassure you. I find that it can upset me either way sometimes, I worry people don't take DD's probles seriously when they play it down but also hate to hear oh poor you, how awful etc! A lot of people probably just don't know what to say.

[Jenkeywoo]

yeah I know, they are good friends and I know they were trying to be nice but I just feel a bit gutted as I feel it's like a massive gulf and I have no idea how to cross it - I guess as the months and years go by they will become more comfortable with it and will be able to accept what is and what isn't.

[Vikkin]

I am shocked that your two friends are teachers! Thought they might have had a bit more insight into the issues you face!
To a certain extent you are living in a different world - you got on the same plane to the sunshine isle as everyone else, but somehow you got off somewhere like Rotterdam. Totally different to where you expected to be.
Also, I remember (I'm going back 12 years now) when ds was 12-24 months was a very difficult time. The first year is taken up with hospitals, doctors, physio, OT, diagnosis, MRIs, god knows what - you are just reacting to everything. The second year you actually begin living and dealing with it.
Do you have any SN mum/toddler groups nearby? They can be really helpful and it needn't mean any more than a supportive group of people and a rollaround for your lo.

[bullet123]

To be honest if they are teachers I would be having serious words with the headteachers of their schools. Teachers are supposed to have an understanding that some children will have special needs and will have disabilities, even if they don't have formal training in those areas.

[anniebear]

Im sorry but I wouldnt be calling them my friends anymore if I was you

How insensitve and thoughtless of them

[mum24boyz]

i am absolutely gutted to think that my ds's teachers are thinking that of them, my ds3 was in reception last yr and his teacher was very strict, even the ds's paed said so when she went to assess him in school, ds4 starts this time, also still in nappies but it has to be said with some understanding of what potties and toilets are for, unlike ds3, i believe ds4 would have been out of nappies now had ds3 been, its so hard, the thought that either of their teachers think that way is disgusting. maybe they were trying to console you but i think their show of complete ignorance on the whole sn issue is disgraceful, ffs some of us have no choice but to trust our kids to their care, neither of my boys in special school, and its bad enough worrying how they are gonna cope with the other kids, you would think at least the teachers would know better.
no your right hun, having sn kids does give you a whole new perspective on life, i get dla for both my boys and feel guilty about it when i know friends/family are struggling financially, and i know one family member is a little bit jealous, ffs does she think i wouldnt prefer to have kids that werent in nappies, didnt have behavioural problems and learning difficulties etc, and generally were just little boys.

[needmorecoffee]

It is a different world. Bet they would tell me that with a bit of postive thought DD wouldn'tbe quadraplegic CP and lying in hospital having catastrophic seizures. Silly me. I'm probably attention seeking.
And DD will be 'shitting her pants' at school age cos she can't walk, sit, roll or hold her head up.
As dor learning disabilites, I've been up 2 nights reading how 95% of kids who get lennox-gastaut syndrome are left mentally retarded (blunt term there). Am hoping to god that I am imagining it.
I have very few friends left with 'nromal' children because of insentistive comments or because they just buggered off cos they 'couldn't cope'. Actually, its one come to think of it and she lives 60 miles away.
I think parents with special needs kids are often accused of being 'negative'. My mum keeps telling me that I'm no negative about DD's prognosis and I keep telling her that no severe quad has suddeny started to walk and talk this late. Its possible that 'friends' can't handle the relentless bad news because it is. Every bloody MRI, EEG, test and doctor tells you something awful each time you go. And you need to talk about it or you'll go mad. Non SN people can't cope or don't know what to say or want to talk about themselves but can't beat you in the sympathy stakes.
I dunno.

[gess]

No wonder inclusion is such a mess.

I was repeatedly told by certain people that I was 'too neagtive' and I was 'looking for problems'.

I just avoided them after that.

Funnily enough they don't say that anymore (just look vaguely horrified when ds1 performs).

Some friend's get it - they become close. Bin the rest (that's my advice ) Actually it is a requirement of mine that friend's have to be able to cope in a sensible way with ds1 (by which I mean not look horrified or uncomfortable or embarrassed when he is in the room). If they can't do that, then I don't bother (and I don't go into all this 'meet without the children' crap- have 1001 better things that I could be doing wiith my time than sitting with a fixed grin on my face whilst someone who can't cope with ds1 witters on about their latest foreign holiday).

If you et something out of the friendship just avoid talking about your dd. If not, go out with other friends.

[mamazon]

Ds has Autism and i am frequently having to defend that fact. people act as though i am making it all up so thati can get this super fantastic DLA money (ooh its such a fortune )

i used to think that having DS meant having friends in the normal world was impossible but actually i have very recently found some of the most fantastic friends imaginable.

they adore Ds and his quirks and are completly accepting of the fact there are times when he needs that little extra help or that we cannot join in sometimes.

The friends you describe sound awfull though. i don't know how close you are to them but tbh the brief description you have given i find them abhorant.
have they thought that maybe a child that "shits his pants" may be acting out because of trauma at home? or that they may have a bowel complainty as yet undiscovered because parent is too embarassed to speak out following teh judgements of said teachers?

quite frankly i would have spent the lunch trying to prevent myself from slapping them into reality and then delete them both from my adress book and not speak with the ignorant cows again.


But don't dispair, you WILL find some true friends who will amaze you with their ability to understand....its just a little harder thats all

[mymatemax]

Like you Jenk I was surprised (& hurt) the friends who I thought would understand have been crap.
In fact my life long bf who is a nurse & whose support & medical knowledge I could of done with didn't come near when ds2 was born, we occasionally speak now & she always says things like "Oh he'll be fine - this time next yr you'll wonder what all the fuss is about" Funny she's been saying that for almost 5 yrs now!

But I have good friends without children who have been fantastic, have no expectations of how children should behave, take ds for who he is & love him to bits.

And of course I have made some good friends through sn pre-school etc & just bumping in to same parents at physio, hydro, OT etc.

[mymatemax]

Actually I think I wanted to say what Mamazon said [GRIN]. Well said!

[gess]

yes I agree with mamazon. I lost some very old friends, but also kept some old and wonderful friends and made new ones. It sorted them out

[Eulalia]

How awful for you. Sounds like they are making no attempt whatsoever to realise your situation. I had just the same thing when my ds was being assessed for autism "oh they'd probably find something wrong in all children" I find it hard to talk to NT friends now. Either that or they chat about things to which I cannot relate to and just make me feel sad because my life isn't like that. Better to not put yourself through it in the first place. As others have said forget them and join a support group.

[Sidge]

I'm sorry your 'friends' were so unfeeling

I have been lucky, our friends have tried really hard to understand and accept DD2 and all her needs, and apart from the odd unintentionally crap comment have been a great support.

I do get the odd comments like how great it is to have a new car!!! (motability vehicle) Wow yeah, should have realised that more than compensates for having a daughter with a life-limiting disability...

Can you find a local group for families with SN? Our local children's centre runs some lovely free drop-ins and support groups.

[MABS]

all i can say is FFS!!!

[Peachy]

Since when did homestart volunteers get handed outa s cushy then? (and as an ex manager of the local branch, I know the score and waiting lists!)


if you don't tell your kids you can get a painful reverse situation- as with ds1- seemingly gifted, nursery recommended scholarship applications etc, we alle xpected GREAT things academically-

three years down the line, no progression academically to note, a dx of ASD (HFA or AS) with learning diffficulties, and SPD

And a child who desperately thinks they will be a lawyer and doesn't stand a chance

[dustystar]

I'm sorry your friends have been so insensitive. I have heard the well meaning " oh he's just like other boys his age - hes fine" line so many times that I could cheerfully thump people when they say it. I know they are trying to be nice but what they are actaully implying is that I am imagining it all or trying to find excuses for how ds behaves.

None of my close freinds has reacted like this but my Mums best friend said to her the other day that most of these SN labels don't exist and its all done to the parents. Mum was livid as she is a SENCO and she felt that her friend was not only implying that it was my fault ds has behavioural difficulties but also that my mums job was a waste of time.

[dustystar]

all down to the parents

[Peachy]

Oh and I have found the friends who ahve survived are those who have a very specific sense of humour- and are maybe coping with issues themselves in one way or another (eg my mate back home whom I missdreadfully and is caring for her Alzheimers Dad). Those whose life has been all roses and wedding cake (my sister) just don't get it. BUT some of my friends with SN kids are no better- one in particular was very close gfor a bit, but she got so competitive ('my son is worse than yours' etc etc) that it got ridiculous. Well certainly he was worse than DS1 in many ways- then when ds3 regressed she got really edgy!

Its not just about similarity either, that particular friend has a huge number of babysitters etc and goes out regualrly, can't comprehend my life means I can't (Dh working nights, family away etc). So Sn is only a part of it- empathy is the key.

[Jenkeywoo]

Thanks for your support, it's a shame that so many of us have experienced friends who just don't get it. To explain a bit further, the two friends are both secondary school teachers who I met when we did our training together (I was a teacher till becoming a sahm and now not intending to return to the profession for varying reasons). We all trained together and I clearly remember the two hour session - 10 years ago on 'Special needs' as it was called. Vague, very vague info about SN in general terms, focusing on dyslexia, dyspraxia, adhd, perhaps a smattering of ASD but no real info and certainly not enough to know how to handle a child with SN in your class. In many secondary schools SN to a teacher basically means you get handed an IEP at the begining of the year with a few targets on it and very little specific info. Yes, of course the teacher should be motivated to find out more but when I was a teacher I felt so demotivated by behaviour, admin and management issues that I could barely manage the so called 'easy' kids. In mainstream schools children with SN inevitably end up in a bottom set (or at least they did in my school where I was teaching languages) - they are all lumped in together - children with SN, poor behaviour or attendence, or English as a second language and the teachers are given little or no info or help. I decided to leave the profession as I wanted to do my job well and the current conditions of the job made me feel like a failing teacher. I hope this doesn't offend anyone but it is only now that I have a little girl with SN that I realise how poorly served SN is in many many school. It does not of course excuse the lack of empathy shown by friends re: the toileting problems of some children, even without information and support as adults we should be able to see when a child needs help and acceptance.

Sorry, this looks like a bit of a rant, I just feel so strongly that teaching is such a crap profession now, I adored teaching and working with children but after 10 years I left the profession utterly disillusioned and despondant and have no desire whatsoever to return to it, which is a shame because I know I was a good teacher who loved children and was able to get the best out of them. (I'm rambling, sorry, mum has children for a few hours and dh and I are meant to be sorting out the spare room but instead he is watching some crap on TV and I'm on here! )

[staryeyed]

I have a very well meaning friend that so doesnt understand SN issues with my ASD son. She always tells me that he is going to be fine How she can know that I dont know! But at least she is well meaning. Your friends sound like insensitive ignorants.

While we are on the issue -Why do people think they know all about SN because they have read an article or seen a feature on the news?

[Peachy]

Oh no Jenkey, am planning my PGCe after this baby (another yar of degree, baby, pgce LOL). Am hoping to do a Sn post grad as well though, and go for a SENCO role (RE is my subject).

Agree its mismanaged in many schools, our SENCO also is RE co-ordinator (in a very religious school), Head of year, and a class teacher. Surely thare is a limit to the hours in the day? Each year the Head says she willa ddress that, she never does. Fortunately new Head coming at Chrsitmas, so i an perhaps get in there early on.

[bullet123]

Well, if it's "all down to the parents" I'd like to take credit for the fact that Ds1 was assessed as in the top 90% of children his age for non verbal puzzle solving. And that he's got a fantastic memory for songs and stories. And that he never throws tantrums asking for items in shops, shows a great deal of affection to his baby brother and is getting very good at detailed drawings for his age.
There is a lot more to autism than a child who may, or may not, meltdown in the supermarket, but unfortunately that is many people's perceptions and to an ignorant person that is where the "oh, they're just being like any other child" or "I blame the parents" comments get bandied about.