Do some people still see having a special needs child as 'shameful'?

[FioFioJane]

I understand I will get a 'no' off the people who post on here, because we are all obviously very open and accepting of our childrens 'differences' and love them all for it, but was wondering what you found in the 'outside' world. I am perhaps wondering whether it is something that is more obvious in a special school environment aswell. BUT. I am shocked/suprised/saddened at the lack of parental involvement at my daughters special school. Hardly anyone goes to the summer fair/sports day etc etc and the parents that do go are the same parents as usual. I have most probably not seen about half to three quarters of the parents in dd's class attend anything. I understand its upseeting, its upsetting for me sometimes, but to not go would be just too awful. I would feel like I had let her down.

I know this sounds terribly judgemental and i am hesitating posting it tbh, but I wondered if it was something other people had found and what other peoples experiences were/are? and whether the reasons for not attending functions are clear?

Maybe I should change my posting name, I just think its sad

[r3dh3d]

Ummm...

Lots of little bits of answer to that one.

I've found a huge amount of prejudice but only in very specific places. I work (or worked) in a largely Indian office; and I don't mean ethnically Indian but born in the UK, I mean guys over on 2 or 5 year secondments from India. And there clearly is a huge cultural difference. The older generation particularly were clearly shocked and horrified if I mentioned DD1 and would very pointedly change the subject if I talked about her disability: made it very difficult explaining to my boss why I wasn't there to run the 09:30 conf call because we were in hospital again.... I'd say it was a factor in my giving up work; there was a clear undercurrent that we should either lock her up or I should give up my life to care for her but coming to work and talking about it was polluting their nice clean air.

More generally in conversation I get embarassment and not knowing what to say: I think it makes people without that experience feel inadequate and ignorant because presumably there is a "right" response and they aren't making it so they change the subject. Which can be misread, I think.

In the flesh.... not precisely shameful but there is some fear which I think these days is more about learning disability than physical handicap: we are so strongly programmed to behave in a certain way in social situations and to expect everyone around us to do the same. If you meet a child or adult who doesn't do that ... they could do anything, anything and I think there's a strong subconscious unease in that situation which makes you avoid it. What is interesting is if you post on a forum like Mumsnet "oh none of my NT friends talk to me now" all these NT posters come on and seem genuinely shocked... there does seem to be a gap between how people like to think they would behave and how they act in reality.

Re: school. Well, I'm the only parent governor at our PMLD/SLD school! :lol: So it is a bit mysterious to me, too...

I think part of it is that as a parent you learn to cope with/come to terms with your own child but the SN spectrum is so broad that you aren't much better equipped to deal with other SN kids. So you have a degree of discomfort and uncertainty from other SN parents. Plus a feeling of detachment from the school community if most of the children are bussed in and you've not met the other parents. But mostly I think it's just that any family with an SN child is already up to its ears in shit, thanks, and they probably feel they have "done their bit" just by making it through another day: there isn't the same moral imperative to give something back when you're already a net giver.

Sorry. Waffle as always!

[mm22bys]

I am not sure who is "shamed" by it, but here are my feelings.

I have a DS who is 8 months old and he has been investigated for a diagnosis since he was bout 3 months old, and so far everything has come back with no definitive diagnosis, but as of yesterday he has been referred to an assessment team who hopefully can put everything in context, come up with some idea as to what is "wrong" with him, and then hopefully we can come up with a plan to help him develop.

Now where is the "shame" in this? I know that there is "something" wrong with him, but not knowing exactly what is wrong with him is hard, and I find myself avoiding social situations (play group, birthday parties, coffee mornings) where he'll be "shown up" by the younger children.

He is also small for his age (2%), so I even lie about his age to some people (we were at the beach and someone asked me his age, I told them he was about 6 months (at that time he was actually closer to 7), and they told me they thought he was 3 or 4 months old!).

I don't like lying, I don't like having to make "excuses" for him, and I don't like not taking him out, but yes, maybe it's not shame, maybe not embarrassment, but it's definitely not a positive feeling.

Thx for reading if you got this far,

[FioFioJane]

r£dh£d, my dd goes to an pmld/sld school too. Do you find the appearance of parents at sports day etc minimal? and always the same parents? My dd went to a PD school prior to this one and there were LOTS of parents attending things, absolutely LOADS. In a way I can understand the complexities of a child at PMLD/SLD school is different and the child may get uncontrollably upset by the presence of their parents, but in some cases I am just not sure and I dont know why they dont go.

I feel detached from the school, its a very 'normal' feeling isnt it? dd's school is 8 miles away and she has transport but in some ways I feel that this is the reason I need to go and see her at such events, plus she does like me being there (she is such a poser honestly)

I am sorry you had such hassle off work too

batters, I do know what you are saying as it was the same at ds's and I dont understand that either. Its just at a pmld/sld school there are children with limited life expectancy. I would have thought it would be important to see all these special things with your child. But maybe it is just too upsetting?

[FioFioJane]

mm22bys, what you feel is normal though. For a child at that age and having to face a possible diagnosis, it is frightening. You feel such a mixture of feelings. You want it to be someone else child and not yours. thats not shame, thats just a normal human emotion

[2spells]

just answereing the op
I kind of know what you mean. at dd's school there are a lot of children who spend most of their time there. which has made me wonder why.
I do realise sometimes it is because their parents can't cope.
BUT na big BUT why not.
I noticed on particular boy at the respite xmas party. there was Dad and his new son. B wa delighted to have them there. why if dad can't cope did he have a new one . why not look after the on he already had.
I think it is a cop out myself.
Not sure if it is because they feel shame ...more that some are lazy and go for the easy option(PLEASE NOTE I DID SAY SOME)

[moondog]

At the special schools I work in (as a salt) it is difficult to get parents together as the children come from a large geographical area. Having said that,events such as Christmas concerts are jam packed and I often have to beg to squeeze in myself.

No shame,just tonnes of people bursting with love and pride and joy.

[anniebear]

Fio, interesting what you say about the parents at your DD sn school

It is the same at ours

some parents had their child going to the school for years , never came to see him in 1 play. (said it was to far )

Things are not very well supported

[anniebear]

I do understand not everyone has transport, so then it must be hard to get to things

I think I would be getting a bus to see my dd in her christmas play that she has practised for weeks for! so at least I went to one thing

(but then I havent got younger to children to also have to take!!!) so easy for me to say!!!

I sometimes can feel a bit akward talking about DD , but not because I am ashamed of her, I am aware that other people may feel uncomfortable. Like if people are talking about lack of sleep , do I add my bit about how bad it is for us and make their moans seem pathetic.....and make them all feel awful?!!!.............

If they are a bit worried about their child at school, Do I add my worries about DD? and make them feel really bad

Hope you get what I mean!!!!!!! lol

[mm22bys]

Thx FFJ, I have felt so much guilt over my feelings.

I don't wish it was someone elses's child though, or any child for that matter!

[tobysmumkent]

Message withdrawn

[FioFioJane]

glad to hear this isnt a universal thing tbh.

DDs christmas play overlapped with ds's school pick up time (over half an hour away) and I explained it to ds's school and they let me pick him up early so he could come to i dont think schools (mainstream or otherwise) are un-understanding ((is that a word?!) of the complex needs of a 'special needs' family

tobysmum, I dont think snaap would class you as out of area!

[r3dh3d]

Actually, FioFio, I didn't go to the last sports day because I didn't know it was on and I'm not sure parents were ever invited.

There was a "summer fun day" cancelled recently due to the weather, which was a great relief as we'd not had any idea it was happening till the week before, and booked Helena's Dom Care for the same day.

I don't know about your school, but in ours there is a slight feeling that being SLD/PMLD means you can get away with slack/unprofessional communication - and if that means you don't have the bother of inconvenient parents turning up to make the place look untidy then that's all to the good. But something I'm learning (with my gubnatorial hat on) is that SN schools are given a whole load of rope by the govt and are pretty much allowed to run themselves however they see fit.

[FioFioJane]

ours communicates quite well tbh. I have had a few issues with this recent teachers communication, but on the whole they have been fine

[thomcat]

Wow. At first I thought 'no way'. It's so far from how I feel that I couldn't get my head round it. I am so ridiculously prod of Lottie and am very happy to discuss the fact that she has Down's syndrome with anyone that that the thought of anyone being ashamed is so foreign to me. But thinking abou it, I can see that some people might feel a bit ..embarressed about it, odd as that might be to us. How sad though

[lourobert]

Riven- I cant believe what your MIL said to you about getting a 'proper' baby and having your dd adopted, absolutly awful. HOw is she with her now?

My son is only 21 months old so I guess I still have all these things to come. We try to attend all his activity days with his nursery, Im not at all embarrassed about my ds, I explect to go throgh a range of emotions as he grows and we hot different stages but I can honestly say I will never feel ashamed or embarrased by him. Angry,yes but never ashamed.

mm2boys- totally and utterly normal to aviod situation that dont make you feel too great. I did and I still dont see a friend and her son that is the same age because it os too painful, why do somthing that is so hard and hurts so much but I can avoid putting myself in that sitaution. Ive felt better and gotten better with this over time though

[twoisplenty]

Replying to OP message. At my ds special school they recently held workshops in the evening to teach parents about aspects of disability, once per week. I had to travel 40 miles to get there, and each week I saw the same 4 faces. FOUR. The school has around 40 children.

Its the parents evening soon, and the teacher told me that I could arrive quite early in the evening, because not many parents turn up for ks2 children. (She didn't quite put it that way, but that was the message).

Having said all of that, I think one reason some parents never turn up at school is due to the fact that 70% of parents of sn children divorce (so it is quoted somewhere), therefore many sn children are in single parent homes - thereby the logistics of getting to school (when possibly having other children to deal with) is almost impossible.

For me, it takes an hour to travel to school, and I have a 3yo too. It's not easy but I do my best. I am happily married btw, so it helps a lot!

[Boredveryverybored]

I think there definitely is an element of feeling that you are making other people uncomfortable when you talk about it.
With friends and family it's completely different but I know when I'm chatting to someone and don't know them very well I tend not to mention my dd's disability. I don't think it's shame, I just hate it when people get all flustered and don't know what to say to me, or there are others who think you're looking for sympathy and keep telling you how sorry they are and how awful it is.
My dd is at a mainstream school that merged with a spcial school, I only know one other parent of a sn child there (and there are a lot of them) but most of them are bussed to school so there is very little opportunity I think.

[twoisplenty]

I do hesitate when meeting someone new, as to decide wether to mention my ds's cp or not. I'm not ashamed of him or his disability, it's more that it invariably skews the conversation from a normal chat into lengthy questions about the nature of his disability, how I cope, etc etc, and sometimes I just don't want to talk about it at length.

But if I choose not to tell the person that my ds has a disability, I walk away feeling that I have somehow deceived the person, that I've told a lie.

And then if I do talk about his disability, I then start to wonder if they are thinking I am trying to get a sympathy vote! I can't win.

[ShinyHappyPeopleHoldingHands]

I bang on and on about DS to anyone with little regard for whether I am making them feel uncomfortable. Not sure whether this is right or not but it's a fact and I do it! I am not trying to be or prove anything.. I just do it! He takes up my whole life, the good bits and the bad bits, so inevitably, anyone who chats to me ends up having to hear about him.

I recently had food for thought when a new friend who I really like but don't yet know that well admitted she was "afraid" to meet him and knew she would be very confortable around him but wanted to rectify this about herself and the way she knows she is abou disablity. I didn't hold this against her at all.. she was so honest.

Fio that's so sad about lack of parents at sports day etc at DD's school. I would have imagined it being teeming with proud parents!

[chonky]

This is such a sad thread

I can honestly say I never feel ashamed of dd. However, I do struggle to tell work colleagues, as the last thing that I want is any sympathy. I'm always eternally grateful to those people who manage to take it in their stride when I tell them that dd has CP. I told a work colleague yesterday whilst giving her a lift in our MPV, and explaining that no way would I ever opt for a 'Popemobile'. Fair play to her she didn't bat an eyelid.

With respect to the school situation...I work F/T, so I do find it really hard to mesh work with school commitments . I'd find this hard whether dd had a disability or not TBH. However, I also find it difficult sometimes coping with the spectrum of SN that we will see at dd's school. Whilst dd is on the SLD/PMLD curve somewhere, it still takes my breath away when I see a child 'fitting' for example. I find it hard not to come away from the school feeling very teary. I guess it's just one of those things that I still need to get better at accepting.