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At my wits end with daughter, not sure I can do this anymore to be honest.

(10 Posts)
nancyclancy123 Thu 06-Apr-17 23:16:49

My dd is almost 6 and was diagnosed with ASD last year. Her all round development is generally delayed too but she is making some good progress with this and her speech and understanding is coming along too.

What I'm finding really difficult is that she is a real screamer, she could shatter glass. It's getting to the point where I'm just sick of it because it's ALL the time. We have little snippets of her in a good mood and she is lovely but the negative behaviour far outweighs the good.
Here's a list of things that will set her off:
.Her older brothers walking into the same room as her and she doesn't want them in there.
.People tapping/moving their feet about whilst sitting down.
.If we're having a cup of tea in a shop and she doesn't want to be there.
.Other people chatting to me. if we're in the street and someone starts talking to me, she'll start.
.Only likes a very select few people coming round to the house.
.Going for walks etc. she'll protest if she doesn't want to go the same way.
.Will start if her brothers go on the trampoline, even if she doesn't want to go on it herself.

Once she starts she goes mad, screaming, shouting and more recently lashing out at us. This can happen suddenly and we are constantly treading on egg shells. Sometimes, she appears upset, but it's mostly because she's furious.

I have done every course going, both as a parent and as a professional ( I work with children) and have tried to find out as much as I can about ASD and how to help her. But nothing has worked.
It just feels like we are trapped by her. We have tried using timeout (with a timer) when she starts. Putting her in her bedroom, walking away and ignoring, reasoning with her etc. but we are getting nowhere.
Her behaviour is deteriorating at school too and although they have been fab, we are looking into moving her to a special school.
Paediatrician doesn't seem to know what to suggest either.

We are at our wits end, but desperate to help her but how? She sleeps really well, eating isn't great but it varies on a daily basis. I just don't now what else to do to help her, it's been like this for about 4 1/2 years.
We turn down mot invites to other peoples houses, trips to the beach etc. because it's more hassle than it's worth and it makes me anxious.
We tend to do things separately as a family too, so our other children don't miss out.

Sorry for whinging, I know it's not easy for anyone. Just hoping someone might have some suggestions or been in a similar situation.

nancyclancy123 Thu 06-Apr-17 23:19:56

We have wondered about PDA, but I feel like I'm clutching at straws all the time!

zzzzz Fri 07-Apr-17 12:53:34

I expect she is sick of it all toosad.

I doubt you will any real headway with it if you see her screaming in distress as poor behaviour.

nothing has worked.
It just feels like we are trapped by her. We have tried using timeout (with a timer) when she starts. Putting her in her bedroom, walking away and ignoring, reasoning with her etc. but we are getting nowhere.

If you were screaming for help would any of these tactics work.

I think you have to start with the premise that she is screaming in anguish and that she needs comfort and for what is upsetting her to stop, NOT that she needs to learn to hide her upset and endure the horror so that you can all carry on with your lives without her disability impacting you too much.

I know the things that upset her don't upset you. I know sometimes they are invisible to you, but to the person who is really stuck with this condition as opposed to those "just" feeling the fall out, these assaults in senses and order are very real and very dreadful.

Once you have accepted what this really is it becomes easier to deal with.

zzzzz Fri 07-Apr-17 12:58:40

Demand avoidance is a neurotypical response, IMO moving that response to Pathological just allows you to distance yourself from the reality of the distress your child is displaying and encourages you not to look for "the why" because it just "pathology".

Kidakidder Fri 07-Apr-17 12:59:30

That sounds incredibly hard. Noise is a huge trigger for me and i wear earplugs around the house. It does sound a LOT like PDA.

Stradbroke Fri 07-Apr-17 13:00:17

She sounds very similar to my DD. She can be utterly lovely but can also scream a lot. It is so difficult and does really bring me down. I think it is a stress reaction from her. I'm afraid I do walk away as otherwise I would shout and I don't want to do that. Us staying calm does help. We are hoping to move her to special school soon and I hope her stress will go down and that screaming will decrease.

blankmind Fri 07-Apr-17 14:33:13

OP, have you researched sensory defensiveness and misophonia?

From your list, most of her triggers seem to me to be noise-related.

Will she wear ear-defenders, if so and if her reactions are less than her usual and if her anxiety around noise that hurts her lessens, it may be the way to go for a solution.

zzzzz Fri 07-Apr-17 14:48:16

Just a word to the wise. We thought SS would bring a massive drop in anxiety and more understanding. In our case that hasn't been the case. Logically if you have many individuals with these sorts of difficulties it's pretty obvious in hindsight that ms children would be able to differentiate their behaviour in a way that children in a SS may not be able too. sad

It's been pretty exhausting actually.

Stradbroke Fri 07-Apr-17 15:05:38

Yes that is a massive worry of mine actually. That other children will make her life more stressful not less. But she is not learning at mainstream and they are struggling and I need to try for her.

Shybutnotretiring Fri 07-Apr-17 16:43:59

Me too. I am also trying to get my son into special school and am also worried that he may clash with rather than feel at home with the other neurodivergent kids (especially as this was the problem behind some failed 'trial' days at an SS). But like you say Stradbroke, things are going so badly in MS (with the exception of his mild-mannered but quirky best friend) that I feel I have to try it. Especially with secondary school looming. I am just hoping that with the assessments that we still have on the table they can get the mix right (no guarantees of course).

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