What's the best way for onlookers to behave? pt 2

[dottee]

We've just got back from a break away in North Wales and we had an 'incident' where I thought a lot about the first part of this thread.

To be honest, it's been very hard work. I took my dd (aged 12 yesterday) with CP and learning difficulties, along with NT ds and my mum to Greenacres caravan site at Porthmadog. The site btw is SN friendly but not totally accessible. It's in a lovely location right next to the beach. You can get accessible caravans and they do have toilets for the disabled and ramps around the entertainments area but I didn't see a hoist on the side of the swimming pool for example so I cannot say it's totally accessible. The site (British Holidays) is very flat, however, and is good if you want to chill out.

DD threw quite a few tantrums during the week but the staff were helpful and we didn't get into trouble. We were quite an obvious spectacle to some people but what antagonised dd more was when people 'gawped' at her. Her latest is when she is being stared at, she just puts on the deepest crossest voice and says 'oooh you naughty girl/boy/man'. Now that's funny in hindsight and a lot of the mums of SN children will be saying 'Well done' but the situations we were in seemed to escalate because people gawped more!!!

One particular incident was at the Welsh Highland Railway cafe in Porthmadog. Please be assured MNs that the lady who works in the cafe has a daughter who works with SN children and was perfectly OK about dd's rant, so I can highly recommend the place! But there was this other group of 2 mums and 3 kids - we were sat at one end of the cafe; they were sat at the other and there must have been about 8 rows of empty tables between us. But the mums let two of the kids actually come up to the table next to us and stare at us without calling them back. Well you can imagine the frenzy dd worked up to! And they still didn't call the kids back. This went on for about 10 minutes and I was getting scratched and screamed at. The food arrived and dd calmed down.

Ironically, the youngest of the gawping kids (around 3 year old?) then did a runner out of the entrance door someone had left open so the mum then had to respond by (getting up of her a**e) and running after him to drag him back to his seat.

Whe dd had finished, I took her out and left mum to finish her meal. Blow me - mum said the kids then all got up to run the length of the cafe in order to peer out of the window at dd getting in our car. Well that was it - mum lost it! She sternly told the three of them to get back to their mothers and behave!

I take it the mums (from Stockport if you're reading this - and you'll know who you are) have not learned anything from the part 1 thread.

dottee- something else has occurred to me. How much do you have to watch your dd? I have to watch ds1 every single second (otherwise he's scarpered or is into something he shouldn't be). I literally can't take my eyes off him for a second. Therefore I am continuously amazed when I see other mother's not noticing things their kids are getting up to. But I suspect that may be perfectly normal iyswim.

DH had to rush home the ther day to tell me that he had seen a woman come out of the house with her dd (about 6). The woman let herself into her car and then opened the passenger door for her dd. DH was stunned! He's used to not being able to let go of ds1's hand when we're outside. I think dh did his own version of gawping

Like with most hyperactive children, i cannot take my eyes off my ds, 6yo for a second. My local Tescos became very used to me when I took my ds (then 2yo) shopping with him in the front of the trolley and he would squirm around out of the seat, scream at the top of his lungs and throw himself to the floor.

I must've appeared very strange as I ignored him totally, going on with my shopping - at least until the first aisle - whilst the whole of Tescos stood aghast at the noise and mayhem that was my ds.

On one very bad visit, he was screaming so loudly that my ears were nearly bleeding and this mid 50's woman turned to him and said "what a bloody noise" (well I think she did, I had to lip read).
I was very angry that she should address - and swear - at my son and not me as his mother.

I just told her very calmly (clenching my fists) to "ignore it", but she had to have a go, so I just let her moan on - and then thought when she walked away, that I may quite like to mow her down with my trolley. I didn't though, but only cos she was with a partner and there would have been too many witnesses (joke).

It does incence me that people react in this way. We know what we are doing, but people have to have a go or just stare. There have been a great many places that I could not take my son to - therefore even a supposedly relaxed Bank Hol used to turn into a nightmare...and a very stressful day for anyone in a 5 mile radius.

Sometimes a distraction works - such as one young girl (a mother herself who worked at Tesco) who came up during one of his noisy tantrums, refusing to eat his meal and just spoke to him. It turned out that she had alot of experience of ADHD as her brother also had it.

I have had to explain to strangers when they tut and point to other people's children that they may not be able to stop themselves and they are not doing it just because they want a toy/attention.

Those parents encountered by Dottee were very rude and ignorant and i, like her mother would have had to say something. Having typed the Tescos story out, I can see the funny side of it now and have to pity that woman for being so ignorant.

Jimjams - please bear with me, I'm in the middle of the holiday washing - no doubt you are too!!!

Then I've got to shop and collect my two from their dad's. What Easter holiday????

I'll log on tonight.

Would i be a bad mother if i made a little badge for ds (8)saying "I'm not naughty i have autism" for him to wear on his jumper/coat while out in certain situations where he is liable to attract staring?

Great way for a young man to describe it Mary. What a lovely lad! And Loobie - you feel like doing that sometimes because a minority find it hard to know any different to ignorant.

I agree Jimjams - some people are easy with the situation and others aren't. Whilst we were away, there was another mum with a SN girl - I would say this girl had autism although I'm no expert on autism. My mum had met her mum whilst dd and I were having a cool down night in the caravan. We all met up the following night. I extended my hand to this child and she came to me immediately. She was 'distant' until she was 'unlocked' either by music or knowing someone was befriending her. She then wanted to play with my hair and I let her. I could see other mums watching us as they were curious how we all interacted. It made me realise that some people are unsure how to handle the situation but are interested to learn.

As for keeping an eye on dd, I have to do this all the time Jimjams. I'm a governor at dd's school and know how the children with autism can behave. I've had to 'catch' one on a few occasions around school. My dd has CP and complex learning difficulties. She is overweight and quite tall for her age. She can be clumsy because of her physical disability (she is mobile but is affected down her right side so she needs support on most activities). She is not 'streetwise' - she has no roadsense whatsover and will go off with anyone! That frightens me to death! Also she'll clobber anyone passing if she's upset. I've just travelled back from her dad's with her in the back seat and she had the mother of paddies tonight. My hands are scratched and blood has been drawn. She's settled down now and is asleep but I'm quite down about it - it's helping me as I type.

Sorry to go on - it's helping me unload.

You could compare scratches with my dh (for some reason he keeps getting slashed!)

I sometimes wonder though whether that's where some of these problems stem from- we are so used to HAVING to watch our children for every single second, that it seems strange when other parents don't notice what their kids are up to.

I think that's probably true jimjams (re. looking after your child every single second). I think there's a laziness that mothers of NT kids can just about get away with that you can never get away with. And I agree with everyone else: the behavior of those children (& parents!) on your holiday was unacceptable, Dottee.

Related to this subject of onlookers, Jimjams, what advice do you have for extended family members of autistic children? My first cousin/godson (he's 20 yrs younger than I. . .making him 13 now) is autistic. His mother seems to have the house full of speech therapists and aides. She seems to have dealt with this by keeping something of a distance, and I have noticed that she hates to use the word "autistic"she instead refers to "T's 'disability'" when she refers to it at all. So there's a way in which she seems not to want to talk about it, though I have offerred in an informed and non-pushy, non-offensive way (I think!). Basically. . .we live very far awayan ocean away!and T's parents have an uncomfortable relationship with my parents, so, by extension, have been distant with me too. . .I was chosen to be godmother only because they had to find someone Greek Orthodox, and they didn't know anyone else. Anyway, . .what can I do to be a better godmother, given the distance. And what gifts are useful? They always steer me away from toys, books because they say he was never interested in either. So for a while I gave clothes, but realized he must be awash in clothes by other relatives with the same thought, so I started to give moneywhich seems so impersonal. They now tell me not to give him anything, but I can't live with that. I think his mum is very different to you, jimjams, but would still welcome your advice.

Oh gosh - its a hard one - I don't know many people who have difficulty using the word (except my inlaws! ) I do know what they mean about toys etc and I do struggle when people ask what to by ds1. It depends how able your godson is as well. Computer things/videos are often popular (although ds1 pretty much refuses to watch any videos these days). Do you know what his interests are? My son loves cars and trains and washing machines. so anything like that is good for him- especially if it has doors which open- but those "likes" are very individual.

How much money do they have? If they are struggling then paying towards some therapy might be useful (but some people could be funny about that I guess). Lat xmas my son was bought quite a lot of stuff for his sensory room- lights, a mirror ball. a motor for the mirror ball. That's more use to him than toys really.

It's hard if the mother isn't keen to talk about it though.....

Thanks for this thread - it's fascinating reading and it will help me explain to ds, when he's old enough, why sometimes other kids are allowed to do things he isn't. I hope it will also help me avoid causing offence. One thing I wonder though, as an onlooker, whether it is always clear whether a child is SN or not? Stop me if I'm being daft but maybe some of the unhelpful reactions people get are because onlookers haven't considered there might be a reason for the child's behaviour?
I've never been tempted to comment on someone else's child in public (maybe I havent been a mum long enough!) but if I did see a child having what might appear to be the tantrum to end all tantrums, how would I know whether it was an NT child in a bad mood, or a SN child?

Sorry, reading that through again I can see it might look really rude. Wasn't intended that way, I did just wonder whether some onlookers just hadn't thought about SN and were assuming a kid was being bad in some way.

I'm sure it is a problem eddm. Often I want to scream at people "can you not see that this is not normal behaviour?". Little secret - I am quite naughty and now I make it clear that ds1 is SN by getting him to talk. So usually I would say something like "wehre are we going now?" Nothing. We're going home- Where are we going?" Him" "an" me "good talking". etc etc etc. I often moan at my mum that people must be completely stupid as they still don't seem to get it- and she just says that people don't think.

I think in dottee's case though that her dd has CP, and because of her age her disability isn't hidden. I have a friend whose dd's disabilities are more obvious and whilst people do seem to realise she is SN she has some awful things said to her. Too horrible to repeat on here.

Can I just hijack for a few seconds please? Dottee, I have been away from home, and just got your email via mumsnet. I will reply tomorrow .

dottee - sorry to hear about that awful family. Well the mum anway as it is up to hear to deal with her family properly.

I don't expect pre-school kids to understand properly about SN kids and I tend to try and appeal to the parents if my ds is pushing for example and I can't remove him without further upset. Often it is better to avoid the situation in the first place by saying "my ds may be a bit rough" .

Anyway I found myself looking (surreptitiously) at a family in the supermarket yesterday. 3 young boys and a v stressed mum. One boy about 3 was having a big strop. They were all NT but I found myself looking just because I wanted to compare how a NT tantrum appears to ds's autistic one.

ds for once was being good