A bit of a ranty scream

[Jellycatspyjamas]

So my DD is 9 placed with us aged 6 and has had significant difficulties across the board which were all ascribed to her experiences of early trauma. As time has gone by we’ve gone through so much assessment with her, and discovered physical, treatable health issues including issues with toiletting (she came to us with chronic constipation and bowel problems - and has never been toilet trained), sight issues (her glasses were the wrong prescription) and recurring UTIs causing her pain and confusion.

In the latest run of assessments we’ve found she can’t bloody hear - she has moderately severe hearing loss in one ear and mild hearing loss in the other. Her speech, literacy, numeracy and wider learning have all been affected because she doesn’t hear half of what’s being said to her.

I’ve fought for over a year for referral to audiology and then waited for 9 months because of COVID and all the time she couldn’t bloody hear! I also found she hadn’t been referred to the cleft palate team for follow up which is due next year and would have been missed had the ENT surgeon bit also been on the cleft palate team.

I’m absolutely furious that all of this wasn’t checked when in foster care, the paediatrician seems to have been led by the foster carers saying she’s just a bit slow but never checked whether there were physical reasons for her difficulties which have all been written off as psychological, emotional or behavioural. It’s a bloody wonder she’s done as well as she has given the physical problems she’s faced which were all needless and could have been treated long before she landed with me, and it’s taken so much time to pick our way through the system to have all of this checked out all the while she’s been struggling.

I don’t know what I want from this, but I need to dump it somewhere. You trust that your child has had appropriate medical care, that they’re clear about the issues our children have and why only to find she’s been written off without the most basic of physical checks being done. I’m hoping things will start to become easier with the right supports which will now be in place but for fuck sake, it should never have gone this far.

She clearly has loads of capacity to adapt and adjust, and loads of capacity for learning which she’s used to survive thus far. She’s utterly amazing really but has a long way to go. So very very needless.

I'm not surprised you're angry. She really is amazing to keep going with her challenges, masking them, poor girl.

This should be avoided when children are in care, with the lac reviews etc, so avoidable. I'm not surprised you're frustrated.

At least your DD has you on her side, and issues are being picked up. You'll give her the chance to fly once she gets help in place.

Oh jelly I hope you don’t mind me sticking my neck in here. How awful.

She must be incredible to have adapted and got on with things, not the point of course. It’s as you say the needless nature of it

Vent away!! If you can't do that here then where??

I'm on the same page as you.

LB came to us at 11 months. He couldn't sit, point, babble, gesture, or eat solid food. Meeting all development milestones they said. No concerns they said.

@Jellycatspyjamas Rant away! And don't feel bad about needing to.
Plus can relate as still in the process of unpicking my sons needs, partially due to very poor information sharing by LA and the 'it's all trauma and attachment' brigade in post adoption!
Grrrr 🤬

Thanks folks, I really appreciate the support. I’m the first to look at the impact of trauma and attachment but that’s on the assumption that basic physical health has been attended to. I’m sure whoever put her toiletting down to psychological trauma felt very clever and with it. Had they checked however they would have realised she had never been toilet trained (bloody foster carers) and had physical problems as a result. She was fully continent within 9 months which is good going given her previous experiences.

I’m so angry for her, she could have had full support and not have struggled as much as she did had they carried out the right checks. As it is there’s a mountain to climb for her to catch up socially, emotionally and with her speech and learning. The care system has done almost as much damage as the home they removed her from.

Sorry for others going through all of this - keep following your instincts.

Bless her what a lot to deal with, thank goodness she has you, hopefully everything will improve now she has more help, especially with the hearing that must have been so hard for her. My little one has had constipation, always has since she came home, I have also suffered all of my life and my bowel consultant told me that, it’s often due to early childhood trauma, he said from the moment we are born trauma can impact the bowels, I had never heard this before. Wondering I f many other AC have this

Similar experience here! Physical problems put down to trauma and delayed development- turns out poor boy couldn't see! Of course he kept bumping into stuff and walking round in circles! Very thick glasses and he's now doing really well. I just can't believe no one checks these things as standard- I still felt terrible about the 6 months we had him before managing to get a referral to the eye clinic, but he was in care for years before with no one noticing!

OP routine hearing checks should be done at birth, at 2.5 year and at 4- or 5 years, for all children. Are you saying that none of these were done?

Her early checks were missed, she was with birth mum until 3 and she just didn’t have the checks done. Her intake medical didn’t include hearing checks and neither did her discharge medical.

Her 5 year check happened while in care, she was treated for glue ear and she came to me aged 6 having been discharged from all services and an understanding that she had significant developmental delays. She has learned to mask her problems very well so my concerns weren’t seen in her behaviour at school, occasionally her childminder would notice she didn’t quite seem to catch what was said to her but again that was ascribed to a processing disorder. It’s taken the best part of 2 years to get someone to properly look at her hearing.

Between the lack of scheduled checks, and the presumption of learning difficulties, early trauma etc it’s been very hard to get folk to consider there may be a physical issue at play. Finally we were referred to the community paediatrician who supported is in properly exploring her physical health of which her hearing is one of many health problems identified.

You are totally justified in being absolutely livid on her behalf. All those checks should have been the minimum care she received

We were "lucky" (though it shouldn't depend on luck) in having a very switched on paediatrician who said in our first meeting that it was her job to be a coordinating point with all specialisms and to call if we ever needed her to give anyone a kick into action. She pushed through stuff for us that would have been very tough to navigate otherwise, and she was relentless in ensuring stuff actually got done after referrals were made.

I'm just so angry with you though, that this isn't the normal standard of care and support people receive

Sounds incredibly frustrating.

The thing that took time for us was her dyspraxia.
I raised issues with school age 10 but they fobbed me off, plus to be honest it wasn't clear whether issues were due to being behind generally educationally. Eventually got diagnosed in year 11.

It is very easy to go with the 'obvious' and for people to not look behind the scenes until pushed.

Luckily she has you to advocate for her.

@MutteringDarkly our paediatrician is fantastic - mindful of issues around trauma and attachment but doesn’t assume that everything is related. She’s really pushed for wider physical health checks which has made the world of a difference.

@jellycatspajamas So pleased you are managing to unpick issues and get the right support, but aaaargh, it shouldn't be so hard!

It is a really good point, physical health checks being important, and it seems so obvious once it is stated. What would be the process for getting this applied as standard for children entering and leaving care?