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Singed by AIBU

(60 Posts)
zzzzz Sun 30-Dec-12 00:47:16

I know there must be others of you who find some of the views expressed on the main boards about our children really bruising.

I want to say how impressed I am with you all. You take no shit, and you are funny and human in the face of extreme provocation.

I have been having a bit of a sniff about it but "Tolerance is...." has caught m imagination.

Honk honk my dears.

EllenJaneisstillnotmyname Sun 30-Dec-12 01:13:42

Honk honk.

Tolerance is putting up gracefully with a DC excitedly and enthusiastically flapping and bouncing in front of you during a Panto. That sort of thing?

zzzzz Sun 30-Dec-12 01:27:35

Yup. sad

lougle Sun 30-Dec-12 08:45:31

I'm torn. On one hand, I can see the fact that a child can't help flapping, etc. On the other hand, I do think it's helpful to minimise the disruption it may cause. DD1 is, frankly, hard work at church. So, we make sure we sit at the back, next to an aisle so that we have space.

Ineedmorepatience Sun 30-Dec-12 09:54:28

Dd3 once dropped an ice lolly down someones back at the panto while she was jumpimg and flapping, the other members of my family saw it happen but noone told me until we came out, I was horrified that none of them had apologised.

Dd3 still takes great plesure in repeating the story very loudly whenever we go to the pictures or theatre.

Oh god, I wonder if that person started an AIBU about us.shock

I try to stay away from AIBU it gets really vile at times sad

CwtchesAndCuddles Sun 30-Dec-12 10:16:59

I'm also torn - ds is accepted in church, and they are used to his outbursts but when it comes to the sermon / talk I will take him out if he is very distracting.

I think it is unfair to the speaker and other members of the congregation to allow ds to act in a way that prevents them from hearing what is being said.

WeWilsonAMerryChristmas Sun 30-Dec-12 11:33:08

I caught up with that late last night - too late to be coherent. But there was more than one poster who changed their minds or thought about their initial reaction. Thanks to you and Team SN. So I'd call it a win thanks

It's hard work and depressing sometimes but we did put up a good show.
I loved kungfupanda's suggestion.

zzzzz Sun 30-Dec-12 12:17:19

kungfu panda. Ideas were inspiring.

It's interesting that so many of our sn ers remove their children when they are disruptive. I wonder how old those children are? For example those of you who don't stay for the sermon at church, would you stay if your child was older and listening but making noise? If you do how is your child going to be an equal member of the congregation?

We go outside or leave if things are getting too difficult, but I do that for the nt children as well. I don't go to venues that I feel are too challengeing for ds (unless forced to by circumstance), but that's our choice and my parenting style (I favour slowly expanding boundaries rather than chuck in at the deep end sink or swim).

One of the great things about mn sn is it has allowed me to think about my stance on sn. There are lots of things I simpley had never given much thought to unil ds came along ( and he is only 7).

Tolerance is.....understanding it's not an even playing field.

Wilson blush I am strictly flock, but yes there were some brave old geese out there blazing a trail through the dark.

sickofsocalledexperts Sun 30-Dec-12 12:44:08

I would not allow my DS to disrupt a whole audience's pleasure like this. If we ask people to be tolerant then it has to work both ways, so we also respect the other 99% of the audience's right to enjoy the show. I spend a lot of time and energy teaching him to be quiet in the cinema, haven't braved the theatre yet.

silverfrog Sun 30-Dec-12 13:05:17

I was on the thread early on.

Some took exception to me suggestion that sometimes, some stims can be reduced/eliminated, and that sometimes it can be as simple as reminding the child to do X/not to do Y.

I got quite a lot of grief for that, and roundly told that to stop/reduce stims was cruel and that the whole world should accept dd1 warts and all.

To a degree I agre - dd1 has a place in the world and we certainly do not hide her away, keep her away from anything or constantly harp on at her to keep still/quiet/whatever.

We also, however do a LOT of work to ensure she is as calm and happy as possible on outings, and that her behaviour is as socially acceptable as possible.

We have removed dd1 when it has become necessary. But it has not been necessary too often - mostly we do so when she is quite deliberately inflaming a situation (root cause may well be sensory, but the resulting behaviours are OTT for dd1 at that point, iyswim) as to not do so would (in dd1's case) result in more extreme behaviour the next time we tried to do whatever it was.

We take dd1 everywhere from the local cafe to posh-ish restaurants to panto to the Albert Hall. Sometimes it works, and we 'ask' our immediate neighbours in the audience to ''put up with" behaviours, and sometimes it doesn't and we remove, regroup, and either try again or mentally note what needs to be worked on.

This is how it is for us, and to be told that to do so is cruel and Unaccepting of dd1 and her autism was actually quite hurtful.

Dd1 is 8, btw.

sickofsocalledexperts Sun 30-Dec-12 13:23:24

I agree Silver. To argue that an autistic kid's right to stim noisily, to the detriment of a whole audience's right to hear the show, does the cause of inclusion no good at all. Anti social stims will narrow down my DS's life: to leave them unchecked is short-sighted and cruel. My very nickname on here relates to my nausea at the bleeding heart "experts" when Ds was 3,advising me "ah,bless, leave him to flap his little hands,bounce up and down and shriek "eeeeee" on continuous repeat, it is just his funny little special ways!"

What I say to them now is this.

Fast forward to when he is 19. He now weighs 16 stone, is built like a prop forward and is 6 ft 5. He is bouncing so that the whole bus shakes and booming out an odd "eeee" noise. Are you going to sit next to him on that bus?

zzzzz Sun 30-Dec-12 13:24:42

sickof I didn't read that OP as the child stopped the performance. I read a small child was jumping up and down banging his head in front of an adult man, for parts of a panto. I spend quite bit of my time 24/7 teaching children how to behave. My ds sniffs when stressed, not a delicate little sniffle but a full blown throaty sniff. I think it is a tic and an quite frightened about it. He can't help it. He can't stop it. It hurts. When it started he spent a lot of time in trouble for doing it. Without a level of tolerance he's not going to go anywhere, see anything. Is this so very different?

I feel a bit for the Dad because I'm guessing he couldn't reach him and that the "smack bum" comments were to stop things escalating. I used to say "gentley, gentley" to my ds until I realised it made people think he was about to attack. blush (he is non violent but bouncy)

sickofsocalledexperts Sun 30-Dec-12 13:27:12

I think you an retrain a lot of behaviours,even when they seem unconscious. Not saying it is easy though.

EllenJaneisstillnotmyname Sun 30-Dec-12 13:30:27

I expect many of us would try to calm the flapping etc down, but if the DC is just excited, not distressed but this is how they behave when excited and despite your best efforts they can't sit perfectly quietly, are they not 'entitled' to still enjoy a Panto? This is a Panto, not Shakespeare, remember. Does this not come under reasonable adjustments? If you take them out every time, they may never get to enjoy a Panto.

It's like the difference between Sunday family church and a wedding. Regular churchgoers should accept some disruption if they want to be truly inclusive and ensure a DC is brought up as part of their christian community, surely. If the person with a disability is gaining from being in the congregation, why should they leave. Should a christian person with Tourette's be banned from church services? Or should the church make allowances?

I'm not a Christian BTW.

sickofsocalledexperts Sun 30-Dec-12 13:37:08

There is a balance IMHO. I can remember being outraged when my noisy 3 year old DS was asked to leave a friend's boy's bar mitzvah. How dare they, I said,he has the right to be included? But , looking back, what t f was I doing expecting him to sit through it. And his right to sit thru it meant no-one for 3 rows in front or behind could hear a word of the ceremony. I had put DS's rights ABOVE those of everyone else, and that's not right either.

zzzzz Sun 30-Dec-12 13:46:06

You can't retrain tics sad anymore than you can retrain an epileptic seizure.

Nt 3 year olds get very little from attending other than behaviour training, and will grow out of it. Older children, may have perfectly normal levels of interest and enjoyment in a panto but be unable to sit still. It's like broken leg versus amputee?

StarOfLightMcKings3 Sun 30-Dec-12 13:54:22

An NT child might NEED to empty their bladder. It might be uncomfortable for them to have to hold it.

Hell, I'll just accept that they should not be restricted from addressing their needs and encourage them to piss all over the bus. Cruel not to.

WeWilsonAMerryChristmas Sun 30-Dec-12 13:55:56

I will stand on my tongue before I criticise another parent of a child with SN but on the first reading of the OP told it, I think if the father had been beside the child showing that he was trying to manage the behaviours, some slack may have been cut. TBF if there was an NT child in front of me getting over-excited and the parents were hissing at them from two rows back, I would have been a bit hmm too.

And while you can retrain a lot of behaviours, that specific child in that specific situation could have been doing really, really well. I do keep coming back to the fact it was a panto too. You expect bedlam at a panto. I bet there were plenty NT kids shouting for sweeties and jumping up and down.

StarOfLightMcKings3 Sun 30-Dec-12 14:03:51

Tbh, Ds does better at Shakespeare stuff because the rules are clear. You sit still. You shut up.

At a pantomime, the sensory experience can be overwhelming and sometimes you can make noise and sometimes you can't and all the people everywhere are fidgeting and Ds can't follow the story nor the social rules.

This is why we go to usual cinema shows rather than autism ones.

I think there is nothing wrong with taking a child who may be potentially disruptive to something new, but I do think that it should be planned for, practiced and monitored and if it is beyond the capability of the child to behave in a way less disruptive than the most disruptive NT child then the step might be too great at that time and the next show will need to be planned differently. Perhaps different seats, shorter showing, younger audience etc. just don't ever give up on your child and their ability to access these things.

WeWilsonAMerryChristmas Sun 30-Dec-12 14:06:11

Agree with that Star DS would struggle at a panto but is great in 'normal' theatre situations.

zzzzz Sun 30-Dec-12 16:13:42

Mine would struggle with both. grin. We've never been to a panto. For me the experience doesn't balance the fallout IYKWIM. I've don long haul flights though. Possibley there are lots of people who think we should stay at home.

sickofsocalledexperts Sun 30-Dec-12 16:40:04

Tbh I'm quite glad to have an excuse not to go to the panto, or quite a lot of theatre!

MissingInAct Sun 30-Dec-12 16:45:53

The way I look at it is that children (and adults!) with SN should be included as much as possible in all activities.
But sometimes, this is not possible. Yes it is restrictive for that person (child or adult) with ASD. Just as it is restrictive for someone to be in a wheelchair (Not all places are accessible for example).

I have a long term illness that restrict me in what I can do. It's annoying, sometimes my heart breaks because I would like to do an activity with the dcs and I can't and they would really like me to be there too and tell me so.
I suppose this is the same for a parent with a child with ASD. You want them to be involved, you want them to be able to do as much as an NT child and they can't always do so sadsad

So for me the best place is a balance of everyone's needs. For a child with SN not too disturb everybody at a panto (and I would guess it is also the sign that it's perhaps not such a great experience for them too, very overwhelming instead). But for our society to accept that children can be disruptive (SN or NT for that matter) and that people (not just children) with SN should also be allowed to access things like cinema, theatre etc...
Perhaps the answer is in imposing that all cinema/theatre offer some relaxed performances instead of making them difficult to find.

More likely it is about compassion and respect on both sides.

lisad123everybodydancenow Sun 30-Dec-12 16:59:36

Message withdrawn at poster's request.

zzzzz Sun 30-Dec-12 17:05:56

I think the suggestion that the child isn't happy anyway is impossible for us to guess. But certainly my son does not alway look happy when he is and he often gets overexcited when watching something really good on TV.

I'm sure all the parents of children with sn understand what it is like to not be able to do what an able child could. How could we not.

I'm sure the vast majority of us would love to move through the world without comment or censer. I guess if you have a more acceptable disability this is easier to achieve. If you look like a ten year old but behave like a two year old I guess people are less understanding. They believe they could manage better.

googlyeyes Sun 30-Dec-12 17:31:02

I believe in inclusion, and we expose ds1 to as many situations as we possibly can, absolutely expecting reasonable adjustments to be made for his disability.

I would never take him to a 'normal' theatre or cinema showing though. It would be completely unreasonable for me to expect that other people (who have paid a lot for their tickets, panto or not) should have their enjoyment of the show ruined. I simply don't believe that's fair, and I'm usually very trigger happy when it comes to threatening with the DDA. I don't believe it would be great fun for ds either, constantly being nagged to sit down, ssh, etc by me.

Ds has no hope at present of understanding social, or any other, rules, hence for us relaxed performances are a godsend. To me, that is a sign of the theatres/ cinemas making reasonable adjustments. Not that I'm keen enough on panto to try it just yet, but this year our local theatre put on a relaxed showing of Aladdin, and I thought that was great.

If ds was able to learn how to behave in certain situations it might be different, but a significant proportion of autistic children aren't.

Strongecoffeeismydrug Sun 30-Dec-12 17:43:16

I read the aibu thread but didn't comment as I really didn't agree with a lot of the sn mummy's opinions.
DS wouldn't cope at a normal panto so I wouldn't go as it wouldn't be nice for him or the rest of the audience.
I'm all for exposing DS to as many different experiences as possible but I also try to reduce his stimming and noises if possible just like I would my NT child if she was being loud.
It definitely is give and take and judging what would be doable and what wouldn't.

WeWilsonAMerryChristmas Sun 30-Dec-12 19:08:40

All that said, I think the surge of relaxed performances this year Is down to the young person with autism who was asked to Leave a performance of Wicked last year remember certainly the Ambassador group did a few and a couple of theatres near me did them for the first time.

WeWilsonAMerryChristmas Sun 30-Dec-12 19:09:24

^^ complete punctuation fail blush

DorsetKnobwithJingleBellsOn Sun 30-Dec-12 19:10:46

I have been singed/badly burnt by special needs.

zzzzz Sun 30-Dec-12 19:15:31

strong I'm sorry you didn't feel able to post. I don think you should have held back because you disagreed. I understand you don think it would work for your dc, but would you say all noisey disabled individuals should stay home?

zzzzz Sun 30-Dec-12 19:16:36

dorset hmm

I read the thread too and didn't agree with many of the other posters ( the parents of dc with sn). I didn't want to get in a fight , so didn't comment.
I have a dd with ASD and I think that there needs to be a balance between everyone's needs.

zzzzz Sun 30-Dec-12 19:22:27

"Don't" sorry all.

tough there were other mums with children with sn who didn't agree.

EllenJaneisstillnotmyname Sun 30-Dec-12 19:32:19

I'd rather comment here, where it's safe. It seemed to be getting unnecessarily confrontational and militant on the thread.

sickofsocalledexperts Sun 30-Dec-12 19:37:04

I agree. All nuances of discussion on disabled issues would be lost in AIBU in a maelstrom of prejudice ("autism and ADHD are made-up,these are just naughty kids, bloody spongers,not really disabled blah blah")

zzzzz Sun 30-Dec-12 19:51:08

I agree that it isn't easy explaining repeatedly that behavioural problems aren't all solvable by being a bit tougher, But I didn't see too much scrounger talk.

I find myself becoming more and more hard line about inclusion. But realistically I live a fairly isolated life and home educate my most vulnerable child, so my life is inclusion on my terms.

I do feel totally incensed by people talking about the general public or society as though people with disabilities are somehow outside those groups. angry

sickofsocalledexperts Sun 30-Dec-12 20:07:38

I have one of the noisiest autistic kids I've come across, but it is not his right to be noisy where it spoils the enjoyment of others. If that is the case, I either teach him painstakingly and over many years and much stress to be quiet(er), or we don't go. But if I had gone on AIBU and said that, it would be misused by bigots ("well, see, that's an actual autism mum agreeing that her child shouldn't be allowed in the theatre. "). I have spent many years on here fighting on AIBU threads (with some rather fine swearing, if I say so myself) but sometimes it is not worth the fight.

WeWilsonAMerryChristmas Sun 30-Dec-12 20:11:19

I think it's difficult when threads get polarised. But whether individual parents would choose to take their DCs to a panto or not is not the point to me - as I've said, the ignoring of the 'normal rules of theatre' would drive my own DS insane. I'm also in the camp who works hard on reducing stims.

But all that said. The child attended the panto and that's his right. And I'm going to defend that right. Because the alternative is unthinkable, to me.

StarOfLightMcKings3 Sun 30-Dec-12 20:11:46

What sickof said. It is far to complex for the average AIBUer. A bit like getting into the same debate on the Daily Mail website. Absolutely not worth the effort.

WeWilsonAMerryChristmas Sun 30-Dec-12 20:12:05

Although I missed the thread so I should have said that on there, of course... ^^

zzzzz Sun 30-Dec-12 20:15:48

I think most posters are just like us before we had children with sn. I don't think it's too complex, just maybe your mind has been pondering other truths.

eggandcress Sun 30-Dec-12 20:19:23

Well something good has come out of the AIBU thread for us.

After reading that I suddenly felt desperate to take ds (severe autism/aged 13) to see Nativity 2 with DH and DD.

It was not without problems but over all a success ds loved the cinema - the seats, sitting in the dark, all the music in the film plus the popcorn. He seemed to look at the screen fleetingly and I think he was listening as he clapped at one point when they were clapping. He did get a bit wild when the water scenes were on as he truly loves water and stood up a couple of times but ok really. I did hear the boy behind ask his mum why he was standing up and the mum said because he is enjoying himself which I thought was a lovely answer.

I think I would risk it again but not too often!

sickofsocalledexperts Sun 30-Dec-12 20:21:33

Good on DS eggandcress!

We use the disabled setting at front of cinema, as then it doesn't matter if DS stands up or bounces (no-one directly behind us)

sickofsocalledexperts Sun 30-Dec-12 20:21:52

Seating

wasuup3000 Sun 30-Dec-12 20:23:31

There were some posters on that thread who obviously had no understanding either way of what it is like to have a child/children who is different from their NT child/children. I think that is what was sad about the thread. That and the pain of the parents who were trying to explain this to them.

StarOfLightMcKings3 Sun 30-Dec-12 20:23:53

We do too sickof. Though silly cinema won't let me take the buggy in, even though there is space there, so trying to manage tiny baby, whiny dd and Ds with ASD when having baby in buggy there means I coukd manage Ds better.

zzzzz Sun 30-Dec-12 20:24:02

" I did hear the boy behind ask his mum why he was standing up and the mum said because he is enjoying himself which I thought was a lovely answer."

grin how lovely.

Well done for taking him and yay!

eggandcress Sun 30-Dec-12 20:24:58

I think we would do that too sickof - next time. It is so long since I went to the cinema I forgot how it works! I thought you just sat anywhere but we had allocated seats. The front ones were empty

sickofsocalledexperts Sun 30-Dec-12 20:25:42

No buggy is stupid rule! That area is made for wheelchairs so surely buggy too!

StarOfLightMcKings3 Sun 30-Dec-12 20:28:43

I think it's complex because it is about context. That dad might have been threatening a smacked bum as the only thing he thought he coukd do to appease the judgies. I know sometimes the difference in my ability to parent and manage design a socially acceptable way can be affected by the actions and reactions of the people around and onlookers. Perhaps the boy has behaved well at other non-panto productions. That's what I mean by complex.

eggandcress Sun 30-Dec-12 20:29:39

I feel empowered by some of the parents on that thread - I am going to be more assertive and take ds to more stuff as I think his life is too empty

(one trip to the cinema and its gone to my head!)

sickofsocalledexperts Sun 30-Dec-12 20:34:18

It is funny: I had made a point of always going to cinema showings that would be really empty (eg 11am on a Tuesday) but the other week, through a combination if circs, we ended up at a PACKED 4 pm middle-of-the-holidays performance. And do you know what I discovered?

ALL the kids are noisy, running around and behaving badly. We actually hardly stuck out at all, albeit we were sitting in that nice disabled bit so the constant chair bouncing didn't register.

mymatemax Sun 30-Dec-12 20:37:40

ds2 is usually only disturbing others when he is updet himself so removing him from the situation is usually needed to calm him anyway.
The thing is now he is much bigger unless he is in his w/chair moving him when distressed is just not an option, we just have to sit with him & ride it out.
I do try not to let him disturb others enjoyment, particularly if at an event aimed at adults or needing more concentration.
But at a family or child event I try to let him just be himself.

I do believe there just needs to be more consideration from all to make life more inclusive for all.

eggandcress Sun 30-Dec-12 20:38:04

Yes I thought that too - the other kids just talked in normal voices, not in whispers

zzzzz Sun 30-Dec-12 21:08:46

smile drunk on a cinema trip!

Only on mn sn would we all really get that.

I feel like ignoring my large white pulpy body and extreme eau de house wife and shouting "you go girl" grin

eggandcress Sun 30-Dec-12 21:21:53

Thank you zzzzz

I think I will be a "go girl"

I am emancipated!

Thinking of lists of places he could go

Pixel Sun 30-Dec-12 22:14:14

I've been to quite a few autism friendly cinema screenings and tbh I find them more peaceful than the normal ones. Maybe I've only been to ones with non-verbal kids like ds grin.

I was going to comment on that other thread that I'm Jolly glad we have tried to 'moderate' ds's behaviour. I dread to think what our lives would be like now he's nearly as big as me, if he was still behaving as he did as a toddler. People were getting quite stroppy forceful though and I chickened out blush.
I can see both sides of the argument. I don't think it's unreasonable to expect people to be understanding about a small amount of flapping etc but I would be there doing my best to minimize the disruption not sitting in another row entirely and trying to threaten instruct from afar!

I still don't understand why no-one just asked the parents to move him back.,

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