The wrong biscuits

[Lougle]

Some words of wisdom, with a pinch of understanding, would be gratefully appreciated.

DD1 is 6.0. She has SN which we have known about since she was 2.9, but are still not neatly packaged. She has a 'squiffy' MRI - some bits slightly small, some slightly rotated, some slightly smooth, etc. Apparently, only someone who really knows about MRI scans can see it (ie. many doctors would look at it and deem it 'normal'), but those that 'know' are adamant that hers isn't 'right'.

She has global difficulties as a result, but does walk, does talk, etc. She has epilepsy (currently off meds) and she does go to Special school.

Sorry for lengthy background, but I know I don't frequent these boards as I used to, and I know that I don't have a neat 'dx' for her to explain how she is.

So. Today she had slept at Nanny & Grandads and we were joining them for lunch. She asked if we could have 'cheese, ham and bibics like we have for special dinner'. Dad told me that she had been snacking all morning, as they had made biscuits together.

We bought crackers, cheese and we had some ham. DD1 went WILD. hitting things, shouting, kicking etc. It turns out, after a full on tantrum, that she had meant 'lunchables' crackers, not the Jacobs cream crackers that we had bought.

Now, I took a very dim view on her behaviour. It's crackers. Not the end of the world, surely? However, Dad saw it that the crackers were not what she was expecting, so it was quite inevitable that she would get distressed.

Surely she's got to get to a point where she can live with disappointment? Or am I just being hard on her because she doesn't have a diagnosis that traditionally points to difficulties with change?

She is becoming more and more rigid, in my opinion, with expectations, although school haven't commented. I don't know if her behaviour is different at school, or if it is just that with the vast majority of their children having ASD as some part of their dx, they are used to this behaviour anyway?

My DS is 5 and has ASD and his reactions to things depend almost entirely on how tired / stressed / excited he is feeling at that time. Some times he's very rigid and other times more flexible.

When he does throw tantrums like this we accept its part of his ASD, but we don't give in and give him what he wants as we still need to let him know what is and isnt acceptable.

Hard work, isn't it.

I don't think we can ever say that the strength of someone else's emotion is invalid - it just is what it is, and it takes different people to different stages to either have different emotions, or mask the emotions they do have.

Her emotion of having the wrong crackers, on that particular occasion, in those particular circumstances, might well be as overwhelming and intense as

Also, it's the end of term, and the end of a long dark autumn. Everyone in the country is going to be a bit more volatile than usual.

So, yeah, I'd be trying for compassion without judgment, and then whether someone goes out and gets lunchable crackers today, or not, is entirely up to the family and financial dynamic. there's no right answer to that one.

I'm probably going to show the reason why i was called auntevil - but in my house, everyone has to live with some disappointment sometimes.
I think probably your DD is tired from school, the cold weather, the dark nights etc. She is probably excited - or over excited - by the changes in routine that christmas brings, baking with grandad, sleeping at a different house etc, but ultimately, if you don't have the exact food that was expected, you don't have it.
Let her tantrum, if she needs to get it out of her system, but don't create a rod for your own back. We all bend over backwards to make sure that we have in place everything that our children want or need. We keep to routines, buy the same products etc whether there is a cheaper/better product out there - because it is part of their routine. If you buckle at every request, how will you know what is part of her behavioural issues and what is just manipulation? Whatever our DCs behaviours, it does not mean that they can't misbehave just like every other child too.
I assume that the bibics that you have in special dinners are the jacobs crackers? - If that's the case, what else could you have done?

Thanks.

Auntevil...I thought the biscuits we had for special dinners were jacobs crackers. But it turns out that what she was calling 'special dinners' were actually not the buffet lunches with different cheeses, ham, meats, condiments, fish, etc., but the 'mummy is such a bad mummy and is so tired and has her back against the wall, and we're near a shop...let's get a dairylea lunchable'

It is a really hard line to draw in my house Lougle. Sometimes Dd3 will go off on one like your Dd did today and sometimes I can see her point.

Sometimes it is because people haven't listened to her and have assumed that they know what she wants. That is garanteed[sp] to send her in to a rage.

However, with or without ASD she can't always have things her way so I am quite tough on her [unless it is really obviously someone elses fault].

She is beginning to learn that she can accept things that are not quite what she wanted and that the world doesn't end if she is a tiny bit flexible.

I say beginning to learn because it is a long slow process that can't involve illness or tiredness or change of routine.

I am sure you get the picture. It is damned hard work raising our kids but I for one can't give in and let her totally run the show IYSWIM.

One of the best bits of advice I was gven for Dd3 was from a MH nurse who said " Based on what you have told me, I think you should treat her as if she does have an ASD, even without a DX!!"

I think that piece of advice saved me from going round the bend and allowed me to parent her in a better way. It took us 3.5 years to get her Dx.
Sorry I have gone on and on now.

Good luck.

I agree with your feeling that she's got to learn to cope with some disappointment, but I do have some sympathy.

You know those times when you know you're having XXX for dinner. Maybe it's not your favourite, but you're really looking forward to it, to the point you can almost taste it while you're waiting. Then it arrives and, although it's something you like as much, you'd misheard and it is something quite different. You can feel a disproportional disappointment because you'd been anticipating something different.

She was probably hungry so less reasonable anyway.