To ask for your words of wisdom?

[Margot78]

I am a parent of a 10 year old girl and I’m struggling. We’ve had issues with her for a few years, anxiety, issues with wearing clothes, ocd rituals and bedtimes that take hours. At school she does well and has a nice friendship group for which I am thankful for. We are going through a particularly difficult time at the moment, her anxiety is bad and the ocd rituals are becoming an unbearable intrusion on family life. We are having to pay for private therapy that we can’t afford because camhs are so slow, which is helping her a bit but I think we are in for a long road. The therapist says she has low self esteem and low resilience. I’ve always praised dd, encouraged her, given her so many experiences and opportunities, it breaks my heart that this is the case and I can’t help feeling like a failure.

I am asking for your help because I need to be a better parent. I am so exhausted with it all and nothing seems to be getting better. I think she might be on the spectrum and I know she can’t help it but I feel it is ruining my relationship with her. She gets anxious about clothes and yet I still get frustrated and cross when she won’t change dirty tops or won’t put clean pants on and then I feel sick with guilt. I feel like I make bedtimes longer because I give in to her many rituals because it’s too hard to challenge them and stress her out. She gets aggressive sometimes and that stresses me out and I sometimes snap back and say things I don’t mean then feel horrible. In my lowest moments I feel resentment and bitterness because I just want a normal life. Everything I say and do is wrong. I try to be patient and kind but her demands and behaviours exhaust and defeat me and dh and I feel so alone. My parents and mil just say she’s naughty and blame my parenting, although mil did say I have the patience of a saint when she witnessed some of it.

I’m doing my best but I know it’s not good enough. I was hoping that any parents of neurodiverse children out there could help with some wisdom. How do I get myself into a mental state where I can be calm and patient all the time, where I accept things and don’t wish for them to be different and where I respond in the right way every time? I have lost so much confidence as a parent and I need to know how people do it. How do you get through the day and get things right? How do you relax and enjoy a child when their issues feel overwhelming?

Please be kind. Thank you xx

This sounds so hard and I'm sorry you're really struggling.

The best tactic I've used so far is to say as little as possible during the more trying times, especially at bedtime. DD is almost 3 and you have to sit quietly and ride out the screaming, let them know that you are there if they need you.

If she's neurodiverse, do you have a diagnosis or is that just what you think it is? Getting diagnosed helps.

TikTok has LOADS of parents with advice about neurodiversity, and it's how I learnt that I'm autistic as well as a savant (meaning highly talented in one area), and made me realise that my DD is likely the same. We are both waiting for diagnosis.

If you haven't learnt much about neurodiversity, now is the time. Autistic people like routine but we HATE being told what to do (called rejection sensitive dysphoria) so give ownership and independence as much as possible. I get the sense that rejection sensitive dysphoria might be happening at your daughter's bedtime.

With the anxiety, the only things that help me as an autistic person is to meet my sensory and social needs. If she's autistic, talk to her about her senses - are sounds too loud? Is it too light in the room through the day? Are there certain textures she likes that are pleasing (I will spend ages touching fluffy things but wool and water makes me scream in horror!).

You need to think about her senses and whether she needs less stimulation (obtain noise cancelling headphones if she hates loud noise, or use low level lighting if light is too much. I have a lava lamp for this reason).

Also, as a parent you need to take care of yourself. Buy yourself some earplugs for the tantrums and aggressive times, because it's easier to be calm if you only hear half of it.

I've loads more information and can answer more questions as an autistic adult if it helps.

Thank you that’s so helpful. She’s not had a diagnosis yet but I think with everything we’ve been through there has to be something going on. I guess the hardest times are when she is scared and saying “make me feel better” or having meltdowns where she is verbally abusive. She doesn’t seem bothered by sensory issues except for clothes textures. I will check out tiktok thank you.

Get her assessed for autism.

Work on the assumption that she is autistic. Research it as much as possible. Research strategies and techniques to support her.

Watch for patterns and triggers in her behaviour. Do as much as you can to minimise these for her.

Instead of fighting against her rituals, just go with them. Let her do them and give her the time to do them, even if this means making bed time earlier. Choose your battles, does it matter if her top is mucky? Is it worth the meltdown?

My 9YO is autistic. His diagnosis helped me hugely to mentally let go of the idea that it was my parenting at fault. Life has been much easier since we accepted his condition (even before diagnosis) and just went with it instead of fighting it.

Am trying to get an assessment through camhs but there’s a huge waiting list apparently. I think a diagnosis would be helpful for her and allow
me to let go of the hope that things will get ‘better’. At the moment I know I am behaving as though things can be fixed and I’m probably trying to make her something she’s not.

I'd stop fighting and start looking for ways to support her.

There are loads of things on TikTok, Pinterest, and Facebook and listen to anything under #actuallyautistic. Super useful.

Loads of books on the topic too, so do as much research as possible.

YouTube 'autism in girls' and loads of useful videos pop up.

Accept that her brain is different and embrace it. Autism comes with a lot of anxiety but there is also autistic joy - which makes life totally magical in those little moments.

Also, download the Tiimo app. 🙂

Thank you.