Awareness is great, belief is better, and support requires both

[RainbowZebraWarrior]

This is a mantra that I trot out a lot. It's mainly in relation to me having Ehlers-Danlos Syndrome. Mainly because it's rare, largely misunderstood, and hard to diagnose. But actually, I'm using it again now in relation to DDs as yet undiagnosed Autism. I don't think I should be having to say this to her SENCO teacher. I'm a stickler for detail and have possibly gotten up her nose due to me repeatedly correcting her mispronounciation of Aspergers. As well as saying that current assessment doesn't use the term any more (totally understand those using it as they were diagnosed when the term was used)
Also, total lack of empathy with our current multiple issues and them just basically wanting to force my lovely square peg DD into a round hole. Pissed off, disappointed and exhausted. Thankfully our school nurses are amazing. But I'm stimming like mad tonight and furious at having to battle. Again and again and again. I wasn't taken seriously as a child of the 70's, but fucksake it's 2022!!

Feeling again like an outsider, a hypochondriac, and like I'm going to be accused of Munchausens by proxy.

Sorry, too many mainly's in first sentence. I've also got Lloyd's bank advert music going round in my head and I need a break from my own brain.

I understand. I couldn't get camhs to help ds1 and he's only been able to obtain help as an adult. They ran rings round us and it was hell. We didn't even attempt to seek help for ds2 as I couldn't face going through it all again. Nobody listened or gave a damn.

It's bad because ND parents of ND children are at an automatic disadvantage from the start.

I don't know what you can do other than try and remain calm and assertive, which is easier said than done.

50% chance of passing it on. (eds)

hear hooves think horses... unless of course you are standing next to mummy zebra and there is a baby black and white stripy horse shaped animal next to mummy zebra, in which case, it's still a bloody horse and it is just a trick of the bloody light...

[pissed off at some bloody medics who can not see the obvious, do not keep up with the literature and research and can not see what is clearly in front of them]

take her dad.

they listen to dad. fucking mysogynistic gits. i may have one particular one in mind

@RainbowZebraWarrior do not stand for it, and keep fighting; I really believe Mums do know if something is not right. And I remember how disheartening and bloody tiring it was

I had to fight for DD1's ADHD diagnosis as it wasn't fully recognised by all healthcare authorities at the time and then the same for DD2 who is deaf in one ear and partially in the other.

Good luck - use the school nurses as allies and keep on correcting the mispronunciation by the SENCO, hopefully a better replacement for them will be along!

@BlackeyedSusan

50% chance of passing it on. (eds)

hear hooves think horses... unless of course you are standing next to mummy zebra and there is a baby black and white stripy horse shaped animal next to mummy zebra, in which case, it's still a bloody horse and it is just a trick of the bloody light...

[pissed off at some bloody medics who can not see the obvious, do not keep up with the literature and research and can not see what is clearly in front of them]

💜 the mental image of me and DD as Mummy zebra and the little stripy foal next to me. I've banged my drum to the medical community about hoof beats so many times. Thankfully it's getting there with the EDS side. It's the school. They are doing that gaslighty things of filling in the forms for ASD Assessment one minute. Then acting stupid the next and asking why DD is having a meltdown about swimming lessons. Was seriously pissed off last night so had an early night. Didn't sleep much though.

@BlackeyedSusan

take her dad.

they listen to dad. fucking mysogynistic gits. i may have one particular one in mind

She lives with me full time. Her Dad is dangerously useless and has never had anything to do with school thank fuck

Ds1's school did this weird thing of denying there were any problems when camhs contacted them for feedback, but then were on the phone complaining bitterly about his behaviour to me. Wtf did they expect me to do when they were obstructing his adhd assessment?

It's bad because ND parents of ND children are at an automatic disadvantage from the start

Yup. You can see the NT Headteacher and SENCo's thoughts written on their faces.

I will keep fighting though. I have no choice. Poor child is falling apart and they are being totally fucking useless. Thing is, they are saying they are absolutely swamped with children's mental health issues since the Pandemic. All the more reason not to poo poo them then. I do feel for them being overworked. But I'm not going to allow them to make myself and DD feel like a 2nd class human or a liar.

@BarrowInFurnessRailwayStation yeah this is what I mean about gaslighying. DD has seen school nurse for years due to severe anxiety. Then things got worse and the penny dropped with me. So I went in to chat. They asked where the thoughts of ASD had come from 'all of a sudden' so I gave a list. Well a long long monologue. Plus my own experience! Oh goodness they said. Of course we must refer her immediately. Now they (same people) are playing the idiiot card when it's blatantly obvious that everything is related.

Can you afford to go private @RainbowZebraWarrior? We had savings which we used for ds2 to see a private paediatric psychiatrist who fixed him up with sertraline which has been brilliant for him. It's made a massive difference. We had to go private for his autism assessment as well. Shouldn't have to do these things, but we needed him to have some legal protections as he's quite vulnerable.

Possibly, Barrow. I'm looking into it. Stupid thing is, I got fast tracked as was able to access outsourced agencies due to long wait lists for Adult Autism assessments. Was told by school nurse to just stick with CAMHS via school for DD. But it's too slow.

Also just realised I think we may have both been on NE Thread under different names at the beginning of the Pandemic. Might have that wrong, but so many similarities