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I can keep going on like this

(11 Posts)
Emochild Tue 23-Aug-16 11:31:05

First off, i'm not sure what I want out of this post -advice, sympathy or just someone to say 'I get it/I understand'

Dd (14) has aspergers

She wasn't diagnosed until she reached crisis point -diagnosis 10 months ago after 6 months of school refusal
She's now been out of full time school for 18 months and she's had 6 months of 4.5 hrs per week of home tutoring

My little girl was inquisitive, a deep thinker, intelligent, caring (of animals), eager to please and lovely company -much younger than she should have been which should have given me a clue

I have no idea who my teen is -I've not had years to get used to this, I feel like I've not even had a moment to get used to this!

She's a hermit, her moods are wildly volatile and aggressive, she's intensely secretive, anything that is asked of her is responded to with a no. Anything she is told she had to do results in shut down or violent outbursts
Parenting methods don't work (I got sent in a parenting course and it was all things I'd already done)
Rewards/praise don't work -nothing works

She dominates every aspect of family life

I have a 12 year old dd -she didn't ask to be in this situation either but I can't make things better for one without making it worse for the other

Camhs gave a diagnosis then dropped us
We've been on the waiting list for the autism support team for 10 months and heard nothing
We had one visit from a local charity -dd was rude to the lady that came so they have withdrawn support

Even if dd is rejecting help, her sister and I still need it

I feel like i'm drowning and I can't tell you of one happy day in the last 18 months

I just want to curl up under the duvet and hope it all goes away but I can't because I've got to be the strong one, the advocate for my children, the superhuman that has no thoughts of my own needs -I don't even know what my own needs are anymore

I can't do this

blimppy Tue 23-Aug-16 19:30:42

I didn't feel able to read this and not respond. Your pain cries out from your post. Firstly, you are not alone. There are many of us who are battling with a range of truly difficult issues regarding our children/teens. But it does feel so very isolating, because in real life it can seem that everybody else has kids that are just fine.

After battling Anxiety and self harm for some years, serious depression for 7 months from last November, culminating in reaching a crisis point in May, my DD has now been referred for an ASD diagnoses. It was not something I had thought of at all when she was younger, but over the past few months it has pretty much hit us in the face! I understand this is often the way with teenage girls. We are not far along this path really therefore, and I don't have any useful experience to offer I'm afraid. But I do understand something of what you are going through. I too have a younger DD and one of the things I am now making sure I do is create time and special stuff for her and me. Sometimes we just have to leave DD1 to it (as long as we don't have immediate concerns that she is a danger to herself).

Where I live, the local autism society has a good reputation and CAMHS are already pushing us that direction. CAMHS is stressing that they are only a diagnosis service for ASD and do not offer any treatment. Useful hey? But I am hopeful we will find some support through the charity. Might be worth you getting back in contact with your local charity and asking for their support for you and your younger daughter, even if DD stays out of it?

Emochild Tue 23-Aug-16 21:06:06

Thanks for taking the time to reply blimppy

I appreciate you taking the time to read my waffle and reply

I just feel like I can't talk about this in real life as no one understands what life behind closed doors is like and I feel judged by people -why can't I control her? She didn't used to be like that, it must be something to do with the parenting etc etc

Ex (both dd's dad) isn't interested in helping -or even seeing his kids

I say in my shed crying for half an hour this morning because I just needed some space -sounds pathetic I know

blimppy Tue 23-Aug-16 21:40:31

Emo, it doesn't sound pathetic at all. In a way, you are grieving the loss of the daughter you thought you had. It is not your fault - there is nothing you have done, or could have done, that has caused this. I completely get what you mean about how other people react in RL. I have some good friends but I have at times felt like I am providing their weekly entertainment with my updates on the hell that this year has been! They all seem to have children who are doing really well. I'm pleased for them, but am having to adjust to a new reality with my own daughter. It is hard.

You sound really low, and I wonder if you can access some support through your GP? It doesn't have to be anti-depressants as there may be a local counselling service that can help you. I have recently gone through some counselling. I was doubtful about it as it clearly can't change the situation with my DD, so how could it help? It did help though. I've learnt to step back a bit from her and her situation. My counsellor described it best - when I first went to her I was down in the pit with my DD, but that is no help to either her or I. Now I feel more like I'm at the top of the pit and able to reach a hand down to her when required to help.

Emochild Tue 23-Aug-16 22:35:14

I don't have days when I feel this low about it all very often

She has just been particularly testing today

I think there are some self referral counselling service in my area so I will look into it

user1471537877 Wed 24-Aug-16 08:00:50

Emo, I am in a very similar situation to you and want to try and reassure you that it can improve

DD turns 14 this week and spectacularly fell apart on transition from primary to secondary school to the point we were advised to put her on suicide watch

She could no longer cope with standard education and by sheer luck I enrolled her at Interhigh which has been a game changer

I would say greater than 50% of her female classmates appear to be on the spectrum and she has found a place and people that she belongs to but in a way that she can control

We have been fortunate that our local authority agreed to fund the place via an EHCP

Our DS is only 14 months younger and as in your case bore the brunt of things, we realised he needed time for him to just be a child too without the pressure of his sisters problems and so found a hobby that he regularly attends away from his sister to give him that space

On a practical level have you applied for dla? This would give you some extra financial support to provide opportunities for both children and breathing space for you

There are far more of us out here in similar situations than you think and if you keep posting you should always find someone to chat to

PolterGoose Wed 24-Aug-16 08:27:16

Message withdrawn at poster's request.

PolterGoose Wed 24-Aug-16 08:31:34

Message withdrawn at poster's request.

Emochild Wed 24-Aug-16 20:22:54

Thanks everyone

I do get mid rate care and lower rate mobility DLA for her but still figuring out the best way to use it

PDA has been mentioned, so I have researched it, but isn't diagnosed locally and they won't fund an out of area diagnosis as she has a formal diagnosis of aspergers

EHCP is a work in progress

PolterGoose Wed 24-Aug-16 20:33:37

Message withdrawn at poster's request.

user1471537877 Wed 24-Aug-16 20:56:03

Females with asd are more likely to present with pda type symptoms as a feature of the condition

Polter goose has given you good suggestions of reading matter

In our case DD's pda behaviour is directly linked to her extreme anxiety and need to control

Try and work out what causes your DD to exhibit pda behaviour and it may give you clues on how to handle it

Here I always know when the time of the month is approaching as that has a major effect on behaviour and tolerance levels

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