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ASD DD 10 Really struggling - how to help her

TheShowMustGoOn

Hi, 

I am new here. DD10 has recently been diagnosed ASD. She's always been 'difficult' (demanding of us, yet demand avoidant herself, inflexible, prone to tantrums which then lead to full on meltdowns) but has very successfully masked her difficulties outside of home. 

As we have progressed through the weeks of lockdown, things have become more and more challenging and I am really worried about her now. She is not engaging with any of the work set by school (she's very bright academically) and the lack of structure and routine is having a massive impact. We've tried replicating the routine of her school day, but despite sitting down with me to make the timetable and then populating it together in the mornings she won't settle to it. I'm not even worried about the lack of academic work as such - if she'd settle to something else, indeed ANYTHING constructive (that's not watching utter crap on TV or youtube) then that would be fine. 

Her anxiety is through the roof but I can't get her to open up very often and when she does, she is just really confrontational. 

She's also habitually snacking and then not eating proper meals. This also massively impacts her mood. 

DH and I are both trying to work full time from home but because she won't settle to anything and is also trying to interrupt her older sister at every opportunity, it's getting harder and harder. I know that because everything feels so out of control in her life she is trying to impose some control, but how to deal with it? We don't have the bandwidth to sit and work with with her for 7 hours a day (both of us are key workers and although working from home, our jobs are pretty essential right now) but I'm starting to think that's what she wants/needs?

We got her diagnosis right at the beginning of all this, so have had absolutely no follow up and I don't really know where to turn to for help. We are at a bit of a loss and I think DH and I could really do with talking to someone who can work with us so that we can support her - how do I go about finding the right sort of person?

Thanks in advance!

Parents

  • Popping in with an update - an absolute angel arrived in our house this week! We now have help with DD each weekday morning. Her helper sits with her to keep her on track with her schedule of activities (educational and fun!). It has made the world of difference.

    I've also slightly changed what she's doing and the way her day is presented - so each day she has a very concise list of things that need to be done. Previous incarnations of our schedule have either shown the whole family's day, or her schedule for the week and I think it was just too much for her to filter. 

    Her schedule is a mix of things set by school supplemented by extras that I know will interest her or challenge her a bit more (tbh she's also been bored out of her brain as they've been set the same cycle of online sessions / resources since lockdown began and it's all been quite basic).

    I know it's only day three, but I really cannot overstate the change in her in those three days. We've only had one meltdown (yesterday morning, piano practice, often a trigger) whereas before this there were several huge ones every day and we were living on a knife's edge the whole time. 

    Fingers crossed it continues! 

  • in reply to TheShowMustGoOn

    That is great news about the help your getting. Is that a friend or someone that is being sent in from like CAHMS or something. We have a 9 year old boy and school are refusing to take any sort of responsibility for him so we feel very alone st the moment.

  • in reply to NAS67764

    It's a private arrangement with someone that lives in our village and used to babysit for us when the girls were younger. She's wonderful with DD10. They are having a great time together! 

    Sorry to hear you are feeling so alone. I guess because our diagnosis has come so recently we weren't really receiving any formal support from anyone anyway, and so have just continued being self-sufficient. School are there to talk to, and her teacher has always been very understanding. But she hasn't had any specific support measures in place up to now. I can't imagine how it must be if you've had a support network and it's suddenly all gone away. 

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  • in reply to NAS67764

    It's a private arrangement with someone that lives in our village and used to babysit for us when the girls were younger. She's wonderful with DD10. They are having a great time together! 

    Sorry to hear you are feeling so alone. I guess because our diagnosis has come so recently we weren't really receiving any formal support from anyone anyway, and so have just continued being self-sufficient. School are there to talk to, and her teacher has always been very understanding. But she hasn't had any specific support measures in place up to now. I can't imagine how it must be if you've had a support network and it's suddenly all gone away. 

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