To the lovely Mum at the soft play party today...........

[baboos]

Thank you for coming over and talking to me, as though nothing had just happened, after ds (ASD) had the biggest meltown at the party table (his food was wrong/the hat was wrong, everything was wrong).

I knew that everyone else was staring at him and me, I could feel their eyes buring into my back as I carried him outside, but you were lovely and kind, and made me feel much better.

He is 4.3 and has a nt twin brother, and this is the 3rd party this year we've been invited too and he has had a meltdown over something at each.

Should I just stop trying to include him in everything that his twin brother does, or grow an even thicker skin... We have already had to give up on group football and swimming lessons due to his disruptive behaviour (we now pay for private 1-2-1) and each time we feel the need to exclude him from something, I just feel so bloody sad for him.

I know I will feel better tomorrow...

Oh, sorry baboos. If you can, please keep going including your DS. I think it's important to have as many NT life experiences as possible, so long as your DS doesn't get painfully anxious. I gave up on quite a few things, normally when neither I nor my DS2 were enjoying the experience at all, but I did/do feel guilty how it restricts my other DC. Mind you, soft play can be hell on earth sometimes. My DS used to play with the vending machines, the bins and the toilets, but rarely the slides or ball pits.

baboos, I have twins (10) one of which has ASD (but diagnosed only in last two years). I've learnt that parties are not the best place for ASD twin, unless they are party given by his special friends (and even then I have to make sure not too loud) Well meaning friends invite him to come with his twin (sister) because they don't want to leave him out, but actually sometimes he would be much happier somewhere else. Soft play is an overwhelming sensory experience if you think about it, and although ds enjoys it, one to one is the right way for him to experience it, not in party atmosphere.

I've found his twin gets very upset by his outbursts, so from her angle it is not helpful to ask for him to be included in everything. They have different sets of friends. It is very hard, and my twins are very fond of each other, but I've learnt that forcing ds to do the same thing as dd on principle isn't worth the stress. Discos are the worst!!!! Don't feel sad for him, just replace the activities which are stressful for him with ones that are not. My ASD son loves parties with backgarden play, climbing frames, a few structured games, park walks, museums, trains, train exhibitions,history. He is a like a different child when he can be one to one and show his interest, and know things can be taken at his own pace. We had to make time for him in our family, and not expect him to do everything with his sister. Obviously the time we gave him special time was usually at the weekend.

What a lovely person, it makes such a difference to your morale too.

A good example of something which Ds couldn't cope with was bowling parties. He refused to play in a team, and kept wandering off to the vending machines - yet in other parties he had appeared fine, hence being invited to bowling party aged 8. I think it was loud music, lighting, confusion which made it impossible for him to behave "normally".
Rugby he hates too, but football has slowly become a passion (aged 8) and now the latest is cricket and tennis. He would practice these for hours. Team games when he was 4.3 would have been quite out of the question.

Oh it really is crap isn't it, I remember that feeling so well

From around 2-4yo ds was like this, we had to suffer so many parties where he was hiding under the table, screaming/crying at the noise of those bloody noisy trumpet things, little brats other children deliberately popping balloons, party entertainers... sigh. And all the other parents staring in horror/fascination/curiousity/disgust.

Poor you.

But ellen is right. Don't stop taking him. At 5yo ds is sooo much better now. I think some things just become easier without you having to do anything, and some need some input from us as parents. Might be worth trying to see if you can work out any triggers, what it is that causes distress, then working on exposing him to these step-by-step. Eg we (through our ABA programme) started playing with the noisy trumpet things with him so he was happy with 1) them being around, 2) other people using them around him, and finally 3) him using them himself (and loving them!)

Also the more he is excluded from mainstream activities, the less opportunities he gets to learn appropriate behaviour from others.

And especially don't stop taking him to groups, parties or lessons because of what other people might think. I didn't think I would get there, but I have now reached a nice place where I can more easily think I don't give a fuck what other people think. My son is more important. As long as he is happy, that's all I care about. The world has to accept that some children, because of a disability that is not their choice, have different behaviour. FFS if others seriously cannot tolerate that, they can fuck off.

Sorry rant over I've had a couple of glasses of wine - maybe you can do the same tonight

But I think you have to make a distinction between events which give pleasure to both you and ds, and events which make everyone unhappy. I disagree that children should be forced to enjoy large noisy parties. After all there are plenty of adults who don't. I don't like playing large noisy team games either... I think we have all got in the habit of thinking you have to get "used" to these things because someone along the line said they were "fun" Not necessarily fun for everyone. A bit like saying that everyone has to enjoy bungee jumping or white water rafting, if you think of it from a ASD point of view. I think you can teach children appropriate behaviour far better in small groups.

Thank you for your empathy ladies...

No wine here... I've tried to find a vice, I really have, but I just can't stand the taste of anything alcoholic. So I've had a little cry instead! Not the same I know, but it's the best I can do...

I dearly want to include him... and we really do try to, we went to football a dozen times before we called time, but he just didn't progress from running around causing mayhem and disrupting the group, despite being given one to one support. We now have to keep it a secret that his brother still goes as he just wouldn't understand why he can't. Maybe the answer is to try everyone and continue with things that work and stop those that don't.

With noisy busy enviroments his hyperactiveness just goes off the scale and he will be extremely impulsive, displaying quite eratic and worrying behaviour whilst disappearing into his own world. He will be quite verbally and physically aggressive when we try to calm him down.

I'm still learning, in time I will hopefully have... a) grown a thicker skin... b) learn't more about his triggers... c) found a vice to help with the whole feeling crap situation.

But I think you have to make a distinction between events which give pleasure to both you and ds, and events which make everyone unhappy.

Yes absolutely, don't disagree with that. We've left every firework display we've attempted because ds has hated it. I don't mean for a second that anyone should be made to do something they hated! I mean that no-one should be forced to leave somewhere, or not go somewhere, because of fears of disrupting the other people there.

But also that it is possible to work on and address difficulties to desensitise (eg the example I gave of ds and trumpet-blowers). I would hate to think that, to conjure up a random example, we couldn't have a birthday party for dd because ds hated the noise in his house.

Baboos could you see if there are any other activities or classes you can find? Something like football (ie a team game) might be a bit too much to aim for for a child so young without really specialist teaching method.

Also I guess you have to look at the specific skills/difficulties of each child.

I know with my ds the notion of a team game doesn't come naturally. We have taught him about taking turns successfully - but probably so successfully that he now doesn't really underetand that in football, if you ask for a turn with the ball you don't just keep it for yourself The concept of passing to another player etc is a hard thing for a 4yo. We're looking at things like gymnastics, martial arts, street dance, musical theatre things with ds - things that he can excel at on his own without having to struggle in a team.

It's so individual. DS1 loves parties, even though he stays on the sidelines and doesn't join in. DS1 can't wait to get out and we usually end up declining invitations for him because he simply doesn't last half an hour. It's a shame, since he's the more sociable of the two boys.

Glad someone came to talk to you, though. It does make you feel a bit less like looking for a crack in the ground to fall into.

I just wanted to reassure you that it will get better. Be as patient as he needs you to be, and sometimes even when people tell you he will enjoy something and you know he won't, don't let people persuade you that such and such will be good for him.
I remember ds having a major meltdown over camping aged 7 in grandma's field over the "sleeping bag with the hood" which belonged to another child, and he wanted. In the end we took him away from the tent and put him to bed in his normal bed in his bedroom(he always had a very secure bedtime routine) and the minute we did he calmed down. We made the mistake of thinking the camping would be fun for him, but of course it was just a complete overload for him, the new arrangements etc etc. I remember thinking how relieved he was when we removed him from the tent and the tantrum - not disappointed at all to be missing out. Now he camps happily, he has reached a new developmental stage at 10, and can cope better with change.

Dd never stops. Conversely ds seems to be absolutely fine, but has suddenly reached breaking point before you know it, and before most NT children would.
A typical example would be a lovely day/week doing drama course 10-4. Absolutely no problems. I am amazed by how much he enjoys it. I am not there at all, he fends for himself brilliantly. Pick him up and try to drop round at friends for a cuppa afterwards. He has a hyperactive breakdown, loud aggressive, just as you describe. He needed to go straight home after that drama course, and DO NOTHING in a safe familiar environment.

My friend, a very old friend who has known him from a baby, just doesn't get it. And I think a lot of people cannot see WHY a ASD child gets in such a state, so sometimes you just have to anticipate any triggers before they occur even when you are letting your child learn independent skills.

Thank you again for the reassurance.

It's just so bloody hard, isn't it... we are all trying to find the right key for our own very individual child, and I sometimes can't envisage a time when things will get better for him.

We need to find successful methods (for him) of reducing the hyperactiveness, which leads to the eratic behaviour, which in turn limits any attempts of engagement to learning any different.

If you could see him in both settings of swimming...

Public swimming pool, 6 in a group lessons - he was like a tazmanian devil up and down the lane, oblivious to verbal instruction or those around him... quite content in being in a world of his own and doing exactly what he wants, when he want's. Like he's in the pool on his own... and he looks genuinely happy too.

1-2-1 swimming lessons in private pool (built on the back of swimming instructors house), so only one other child and another instructor in the pool - Engages well with instuctor (he does wander, but she keeps him mostly on track) remains relatively calm by his standards, will also learn to swim... eventually.

Enough for tonight... will feel more upbeat tomorrow.

It is lovely when someone is nice rather than just gawps. Baboos - my boy was the same as yours at 4 but as he's got older, and due to the ABA we have used to improve his behaviours, life has got a lot easier. He's 9 now, and much calmer. The crucial 2 things he has learnt are 'wait' and 'first x, then y'.