How do I stop feeling disappointed about my DD?

[M3lon]

There is no need to respond to this telling me I'm an arsehole...I know. I would like to stop being an arsehole before it does any damage to my poor child, who certainly deserves better than me for a parent.

The problem is that I'm just constantly disappointed with her progress at basically everything.

I definitely love her....though its taken a while due to PND and depression, to truly understand that. She is now nearly 8 yo.

But I feel disappointed all the time. Obviously I try to hide it - but I'm sure it leaks through.

Both me and DH are musical, sporty and academic and I just don't know how to feel positive about DD who seems to have no aptitude or interest in anything.

So any advice on how to stop being an arsehole would be greatly appreciated.

The thing is, the happiest people I know are not the ones who’ve achieved the most or been “great” in objective terms. They are people who see their achievements realistically and within the context of their own abilities. They’re realistic about who they are, their strengths and their flaws and accept themselves.

Of course we all want our children to be their best selves, reach their potential. But actually I’m realising that being exceptional is not a priority I need to focus on, even if I have another child who is NT this has completely changed my view.

What I want for them is happiness and fulfilment. Not success or accolades. I hope my boys can grow up to have happy, independent lives. Find a partner if they want. Have children if they want. Have a career they enjoy. Figure out who they are as people and be happy with that and work on the things they’re not happy with.

Thirty years I spent trying to be an “impressive person”, what a waste of my time and energy. I’ve been happy but I don’t think I’ve ever been content with myself. I’m working on it!

I agree that getting your DD assessed is a good idea regardless. And actually there may be settings where she will feel more “normal” than at a mainstream school if she receives a diagnosis. I realise that may be upsetting to think about but it may be what’s best for her.

At the moment she’s unable to attend school because of the difficulties she’s facing - a diagnosis could (well should) mean an EHCP, possibly access to specialist schools, possibly schools specifically for ASD children which may be what she needs to feel comfortable. It’s hard for me to say as my boys are so much younger but their diagnosis has already changed a lot for us.

Come on, Melon, you teach undergraduates so you must surely know that it could grant her up to 25% extra 'processing' time in exams - plus reasonable adjustments to her working life that could see her stay employed.

She won't always be a child.

The concrete benefits will really be more about the way that other people can adjust their approach too, not just you as parents.

I've had formal adjustments in my workplace because of the diagnosis; I actually avoided being fired because of it and mended some relationships once they understood I was not intentionally being difficult.

I've had an easier time with doctors since the diagnosis; they used to keep pushing me on different anxiety medications (which I then reacted badly to), when I was actually anxious because I'd been in a noisy waiting room for half an hour, and my real problem was (say) a really sore throat. I'm also more sensitive to pain so now I can be honest about that.

If I'd known earlier I'd have had a lot more help and understanding at university too, where they have formalised programmes offering help and more understanding for the needs of autistic people. I'd also have had an easier time in earlier workplaces and the schools I was in, I'm sure of that.

And I'd have spent decades not beating myself up for being different and unable to live up to everyone else's conscious and unconscious standards.

It's lovely that you and her dad can adapt more anyway - but she sounds almost textbook, and the world around her won't adapt to help her without a stick to beat it with occasionally.

I once had DS's first employer phone me (she was a family friend) and plead with me to get DS to disclose his diagnosis officially to HR so that she wasn't forced to discipline him for something very definitely ASD-related.

He would have been devastated to lose that job after the courage it took to apply for it.

It sounds like you'd like your daughter to fit in with your vision of her. What you want to be doing is supporting her to grow into her vision of her. Happy, healthy and confident, that's the aim.

I just wanted to weigh in with my experience. My DD is 8 and was not coping well at all when she first started nursery and then school. I was wary of the referrals and support school were suggesting because the way she was is just her normal, and I didn't think sticking a "label" on her would actually change how parented her, and I think deep down I thought she would get there in the end and all kids grow up to be teenagers with messy rooms and "normal" problems right? Well school pushed and I agreed to referrals. ASD was mentioned lots, as was ADHD, she was presenting as delayed by several years against all milestones, sensory issues etc. She had speech and language assessments, paediatric consultant appointments regularly, an ADOS assessment (Autism) and whilst all this was going on she continued to struggle and it was all a bit grim.

Anyway, her paed had pretty much ruled lots of conditions out and asked if I would OK genetic testing via a blood sample. We had so many appointments already that it didn't seem significant and I wanted them to rule the next thing out so we could get closer to the end of the whole process so i agreed. The results came back that she had a genetic condition! Complete shock, really not what anyone was expecting. She has Triple X Syndrome which is a rare condition where the embryo randomly develops 3 X chromosomes rather than the standard XX pattern all females have. The symptoms vary widely in girls that have the condition but it presents in some ways as quite similar to ASD. When talking about her diagnosis I have to say "Triple X Syndrome with associated learning difficulties; Global development delay, Social Communication Difficulties and Sensory Processing Difficulties.

What this "label" has given me has been surprising. I have read up and now have a wealth of knowledge about how her brain is wired, how she sees the world from her immediate environment to the bigger world around her. I know that certain language is a challenge for her (abstract concepts mostly) and that she needs around 30 seconds to process a complex instruction. I know why certain environments stress her out and have been on many courses/talks so that I'm now an expert on communication aids, support techniques and strategies to help her navigate life. I'm also SO thankful I embraced the process as we have discovered some physical abnormalities (uterine cysts, bladder issues) which would have gone un-noticed otherwise.

I'm in no way suggesting that your child has this condition. But what I am saying is that there are so many possible answers for why your child is the way she is other than NT or ASD and with the best googling skills in the world you aren't qualified to unpick what those answers are. Pushing your DH to embrace asking for support may be the best move you can make towards understanding and helping your daughter. Diagnosis is about so much more than the label. I'm my daughters advocate until she is an adult and possibly through her adult life. I owe it to her to have a deep and thorough understanding of her struggles and what specific support she needs to navigate them. My DD is now in mainstream school, in a year group below her chronological age, and she is happy and achieving her own "bests" and "firsts" which aren't all academic. Now that I know how she views the world, how her brain works, how daunting certain things are, I can see just how incredibly amazing she is for doing things which most people see as completely normal everyday things. I've also been able to work with the school to provide tailored support which enables her to access education which has been key.

I would suggest a frank discussion with DH and then a trip to the GP as a starting point. I hope that some of the things I've shared may be helpful or at the least that I haven't totally derailed the thread! Good luck with it all, and don't be too harsh on yourself or her. Parenting any child is hard, but it's harder still when you can't just do x and y and fix the issues.

I wonder whether your DD would enjoy the Sophie books by Dick King-Smith? Sophie also loves nature and has a strong sense of justice.

Thank you all - solid points made well again.

lance you are right - I wasn't really connecting the dots there!

shadow that's a very clear explanation of the pitfall of acceptance without finding the 'cause'.

Okay - I will still need to reassure myself and DH that we aren't creating all the issues we are seeing by being shit. People have suggested it on this thread - and its worth ruling that out first. But we will certainly have a low threshold to seeking diagnosis after that point.

I haven't read the whole thread but I've read the first couple of pages so apologies if this has already been suggested. But is it possible that because your sense of achievement is driven by badges and trophies that because your daughter hasn't earned any you see her as a reflection of you and worry that other people will think that you are not a good mum because your daughter hasn't found her passion for one particular thing yet because she hasn't got the badges and trophies to show for it?

Obviously there's no mad panic rush here but I think that's you just hoping that it's not that.

Why would your parenting style cause her massive sensory issues? Or make her have a massive imagination, or loathe white lies? Or make her stare at paintings for ages and ask a million questions? Or make her create barcharts for the fun of it?

It's much more likely that you and your husband have many traits too and that's how you've missed this stuff (and possibly had more emotional difficulties too).

Teacher of children with ASD here. Another helpful thing about a diagnosis is that is helps children and young people to understand and appreciate themselves better. I’ve seen a lot of children who have been helped by understanding why they are different (since it’s always been obvious to them that they are different but they think it’s because they are rubbish now they see it as part of who they are).

I also think it will be hugely important if it is ever right for her to return to formal learning either as a child or at college, uni etc.

There is a massive gap between 'not quite sure how best to deal with this child' and 'shit parents'. Stop it.

(I defy anyone to 'create an issue' in a few-week-old baby that makes it object to certain colours!)

I second what other have hinted at but not said as explicitly that she does sound like she does sound like a good fit for ASD in girls, and that you do too. It common for parents to get diagnosed at the same time as their children. Is this something you might explore? National Autistic Society might have advice.

Ivestopped - yes. I clearly remember DS changing his mind about his diagnosis. He had been ashamed about it (despite our best efforts.) then one day he was reading the paper and said, Mum, M16 are specifically looking for ASD recruits because we have such special brains. He was so taken at the time with the notion that the government might choose him as a spy because of his wiring, not despite it. It was turning point in how he accepted himself. (Thank you M16 for that recruitment ad!)

She sounds like a regular Tolkien - it takes serious skill to have a solid and consistent story thread. She could wind up a fantasy author.

I kind of thought the same about diagnosis with Ds when he was at primary school. He did cope but things started to fall apart in year 6. Secondary school has not been good and here we are with him nearly 15 and still two months away from his speech and language assessment. I deeply regret not pursuing a diagnosis earlier. I definitely don't think we would be where we are now if he had one as a younger child.

I have always suspected he had ASD but I thought he was coping. I'm just amazed how the pressure of Secondary school and puberty have made what were once traits into huge difficulties and issues for him. If I could go back in time we would have pursued a diagnosis earlier, without a doubt.

You actually sound wonderful btw OP. You are thinking deeply and acceptingly with a willing to learn and change, with compassion and it sounds like now you know to look at DD in a different way the only person you are viewing really negatively is ... you.

I think you need to work on YOUR self esteem and understand that no one is a perfect mum straight off of the bat and that you're learning and trying.

In the same way that you can be OK with your daughter not being brilliant at things straight away... do yourself the same favour.

I’m incredibly impressed that you were able to read a tiny baby well enough to adjust clothing colours. Despite being knackered, overwhelmed you systemised what was going on and found a way to get it right for her.

A diagnosis is a platform. It’s a lot better to know your brain is different than to think you are a failed NT. I’d like 30 plus years back please of trying and failing to fit in am NT box and beating myself up for it.

You’ve got some brilliant advice on here, you are taking it on and making changes. That’s a great parent. We all get it wrong sometimes. Actively wanting to do better is an amazing thing.

Just to point out, two people can have ASD and be so different they struggle to meet in the middle. The underlying difficulties are the same but the way they present are very different which is challenging.

OP, have you given any thought to the fact that you could be autistic yourself? You present that way in these posts.

As for your question about the 'good' a diagnosis would bring - it's a key in the door to support/therapy. And an answer for your daughter when she's anxious and wondering why she finds 'normal' things difficult.

cat Oh it was not hard to read this at all....I just tried to get DD latched and she screamed the place down...I decided to do skin to skin for a bit and everything stopped being awful. Over the course of the next week I realised I din't have to take my clothes off to get a latch if I was wearing plain darker colours to start with. I boggle for a while at the fact my now 1 month old baby was organising my wardrobe...and briefly flirted with the idea that I had properly lost my marbles....but then DH confirmed that he'd given up wearing his red jumper when trying to settle her too.

Someone showed DD that black and white striped fabric book with the mirrors that was popular back then when she was about 4 months old and she screamed so hard she barfed.....

Crikey, you're bringing back memories of DS at Primary: 'It's the red [school uniform] t-shirts, they make me feel ill and angry.'

Fortunately, secondary had a nice dull shade of grey.

The whole thought of dealing with school uniform makes me feel panicky. It just seems a mile away from where we are now. I mean proper shoes, bright colours, scratchy fabrics and buttons....always the buttons.

M3lon, how on earth have you been blaming this on your parenting? I mean, it jumps out a mile that your adorable-sounding child has some innate issues, surely?

Actually, you don't need to answer that. I decided I was equally 'to blame' whether DS's problems were genetically inherited from me or caused by my parenting.

But then I had other children who (up to a point ) appeared to have read the book on child development and more or less followed it, which was a surprise.