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Upsetting afternoon :-(

(10 Posts)
Blossom4538 Thu 27-Oct-16 19:33:02

Pls bear with me, I'm probably over emotional as unwell at the moment and it's been a pretty rubbish half term due to sickness.

Anyway, my DD (5) is currently under assessment for high functioning autism and various other conditions. Sometimes I think not, others I think def yes. She has been really relaxed the past couple of days whilst at home with a poorly Mum and chilling, able to do as she likes really - no demands placed on her. Today a little harder, she even finds demands such as getting ready to go out a challenge at times I think.

We popped out just for a little while as I'm still feeling really unwell and she seems under the weather. We met my Mum for coffee. She doesn't usually speak to my Mum (is perfectly verbal with us) and today there was hardly any interaction. The whole time she just looked on edge and into herself, not even interested in what we were saying or talking to me. As soon as we left she started talking loudly to me and it was like she woke up!

She then had a meltdown in a shop as she was terrified to go downstairs via the lift or escalator (no public stairwell). The shop assistant intervened - obviously thought I was kidnapping her or something. It was just awful.

Feel so tearful and tired tonight.

She has also been very sensory this week - liking soft blankets, cushions, hating certain smells and very nervous of noise, licking us. Obviously she's usually at school and I've really noticed it more of the behaviour this week.

BUT she mostly holds it together at school, is interacting much better and talking more. Can get anxious at times. She attends a nurture group and What's going on?! Her friend in nurture group who was recently diagnosed with high functioning autism struggles at school to and has outbursts and behavioural problems.

She is in a loving stable family.

I just feel she has always had meltdowns and behaviour in public, I'm so used to being looked at by now. But she def drew more looks today as I guess she is getting older and it can seem unusual to people and not just youngster/toddler funny behaviour or tantrums. She also looks older than 5.

Upset this evening. I know there are far worse things but it's hard.

PolterGoose Thu 27-Oct-16 20:20:54

Have you watched the NAS's Too Much Information films which show how the world can look and feel when you're autistic? I think it might help you understand better why she melts down in public.

Blossom4538 Thu 27-Oct-16 21:22:35

It's okay, appreciate the recommendation but think I understand and she doesn't meltdown as much these days. Just highly anxious responses and nervousness around certain noises really. I don't know, just feel a little sad.

outputgap Thu 27-Oct-16 23:56:04

Mate, I totally get it. My dd has been diagnosed over the summer. She's the same age as your child. I have found the half term so sad, because she's been uneasy. I just desperately want her to be happy.

I could not give less of a shit about public meltdowns though, bar hating them because it means I've judged her capacity for certain situations incorrectly and made her unhappy. But fuck anyone with judgy pants.

Msqueen33 Fri 28-Oct-16 05:35:16

Horrible isn't it. My dd is six and isn't high functioning but we took her and her sibling to a theme park last week (thankfully Gp watched the youngest also asd) and she was so excited but for the entire trip she looked really anxious and scared. At one point she hide in a bush. Our youngest has a lot of meltdowns our middle dd not so much but it's awful to watch just how anxious she is.

Blossom4538 Fri 28-Oct-16 08:29:17

I don't know why I felt so sad. I'm used to attention in public from behaviour and fine with it really. I don't know.

MrsSam Fri 28-Oct-16 09:33:05

Just because you are used to it doesn't mean every thing is ok and life is a breeze. It's ok to feel sad and it's ok to have an off day or even an off week/month/year! I always find things harder to cope with when I am ill, as I am sure everyone else does too. DS3 used to have a melt down every time I dropped him to nursery school, he was 3 years old, was there for two years before moving to reception and he did it every morning without fail! When I was feeling ok it was fine and I peeled him off my leg, handed him over kicking and screaming and tried not to look when I rounded the corner and he was banging the window like a mad man. When I was feeling off I wanted the ground to open up and swallow me and felt every other parent was watching me fail at being a mum because my child was biting me and scramming me whilst their was just waving goodbye and I would go home and sob!

Don't be hard on yourself, concentrate on getting better and hopefully you will feel stronger too.

Stradbroke Fri 28-Oct-16 12:02:43

You have my sympathy. My DD is older than yours (nearly 8) but I have found this half term very hard. I have an older DS who is 10. I find the holidays very isolating and limiting in what we can do as DD is quite physically unable and finds places overwhelming.

We did go to a trampolining park (where I followed her around and shielded her and the other children from each other) and we went swimming and have been out to the park etc, but it is exhausting. No meeting up with friends, it is hard.

Also when we were out DD was being very screechy and a little boy asked his mum if she was autistic. First time really that has happened and it made me realise how different he is and that others will see this more and more.

I guess holidays just make me see what other families get up to (museums and lots of activities) and I realise that isn't open to us as a family and not open to DS as DD cannot access it.

These holidays have made me realise that I need to get some care in place for DD so that DS doesn't miss out on things.

However hard I try I cannot shake the recurring feeling that I wish this wasn't how it is. sad

flapjackfairy Sat 29-Oct-16 17:53:21

My oldest son now an adult has aspergers. I remember this feeling so well!
For me when we were at home his behaviour was normal to us and some days i thought i was going mad because i couldnt decide whether there was a problem or not and other times i felt it was obvious he was badly affected. It really messed with my head!
All i can advise is allow yourself to feel the sadness. It is a grieving process when you realise this is going to impact your child on an ongoing basis and you cant do anything to change that.
Acceptance came eventually for me and i learnt to accept what i couldnt change.
We worked hard to help him as much as possible and we love him for who he is (as most parents do i am sure). But even now sometimes i feel a bit sad at the thought that he cannot do what other young men his age can.

Msqueen33 Sat 29-Oct-16 18:15:33

I find seeing other kids so hard. We are away and took our youngest DC who also has autism and took her buggy and as we passed a teenager loudly said about how he didn't think they allowed buggies. I should have turned round and loudly said two of ours have autism and youngest does need it.

Some days are really hard and I've found its chipped away at my soul.

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