if you feel up to it you should absolutely email EAA. I did so a few months ago and had an exchange with Carol Ireland the CEO. But your perspective as a mother in similar shoes, the kind of person EAA purports to support, would be so meaningful.
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I wrote to EAA a few months ago and was brushed off.
I remember you posting about this, I feel really awful
I think Lu could have a great day if Erin stopped bloody filming everything! Like, what is Lu interested in? Her light up toys? Great! Let’s tape an egg on the front of her light up book. She’ll probably not care/be annoyed by it, because she just wants her toy, but big deal, you can still say, “Silly eggy on your book, Lu! Did the easter bunny leave that silly eggy on your book?!’ & then offer her a little taste. She might enjoy it, she might not. Either way, you’ve included her in an egg-related activity in a way that is accessible to her - whether she’s into it or not should not be the benchmark for a happy or successful day.
& CAN YOU PLEASE QUIT SHARING PHOTOS AND VIDEOS OF LU HAVING A SEIZURE/POST-ICTAL. Rationalise your reasons for sharing all you like, but it does nothing for Lu at all, except pasting her online in literally her most vulnerable moments so that YOU can get sympathy. Stop it. It’s wrong.
& CAN YOU PLEASE QUIT SHARING PHOTOS AND VIDEOS OF LU HAVING A SEIZURE/POST-ICTAL. Rationalise your reasons for sharing all you like, but it does nothing for Lu at all, except pasting her online in literally her most vulnerable moments so that YOU can get sympathy. Stop it. It’s wrong.
She’s been getting back to back viruses since Tom started daycare. But it’s definitely not that causing it. And there’s no way in hell she’ll stop daycare. No it’s definitely because of the stress of Lulu’s seizures, according to her. Every single thing has to be blamed on that darling little girl.
She will do anything but blame things on herself or her decisions. Every single
parent knows what it's like when your child starts daycare and the germs that they bring home for the first year. But no Erin will never blame anything else or look at logic, clearly shows her narcissism and lack of self reflection. Poor Lu
Also, her latest stories make zero sense. Like if Lu didn't have seizures for so long then why didn't you go and live your life Erin? Enjoy that time and not be so miserable? You know maybe take Lu on a family holiday! Also, the way she says how the current state isn't sustainable makes me feel ill. Like what are you saying Erin? Because this is your life! Then she ends on Lu being at NAPA and Tom with her mum. So she's got the day to herself again and she can't actually focus on that positive.
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Just watched the most recent stories, she is always focusing on the negatives with Luella, never what she is doing well!
Even if Lu was a ‘typical’ child, I think Erin would be one of those hyper-critical parents who are always nitpicking at their kids and expecting them to be perfect robots, rather than children.
Even if Lu was a ‘typical’ child, I think Erin would be one of those hyper-critical parents who are always nitpicking at their kids and expecting them to be perfect robots, rather than children.
Imagine living with this negative headspace. No wonder she’s a bleep
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Right? Imagine if your daughter attended a place like NAPA on a regular basis and you had a veritable TREASURE TROVE of knowledge at your fingertips via other parents of disabled kids. Imagine if you could make friendships, share information, support each other, celebrate your amazing kids together. But that would mean you would actually have to ATTEND therapy with your daughter. & it would mean you could let the therapists to their job and Lu do her job without your asinine critiques of Lu and a phone in her face videoing her, so you could sit in the parents lounge and engage with other parents. Because we all know you don’t take video of Lu’s therapy so you can practise the skills at home. You take video for content and sympathy. So quit whining about how hard your life is, because you have access to hundreds of parents in your shoes, you just choose not to engage with them.
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Yeah, I would have thought she could be apart of a really supportive community who know exactly what it’s like to be in her shoes. Where the conversation isn’t a struggle because they’re living it too. But she is still denying the fact that they are anything other than ‘normal’ and wants to shoe horn herself in circles where people won’t really understand, through no fault of their own. And then rage about them not understanding. And then being all down and sad about it. And repeat.
If she could just accept where they are at, she’d live a much more peaceful life- not easy, but without this constant internal rage she seems to live with.
If she could just accept where they are at, she’d live a much more peaceful life- not easy, but without this constant internal rage she seems to live with.
Thread title....
Erin's sick again, daycare germs gallore...but don't forget it's Lulu's fault! Oh Erin you're a bore.
Erin's sick again, daycare germs gallore...but don't forget it's Lulu's fault! Oh Erin you're a bore.
Erin just shared this - the mother’s profile is small and private (which is why I’ve covered her beautiful girls face). It’s incredibly ick, to say the absolute least, that Erin has screenshot this and shared it. I hope she had the mother’s permission.
That is definitely wrong of Erin for so many reasons.
Another bereaved mother for Erin to envy.
Another bereaved mother for Erin to envy.
Yeah it's super icky. People don't always want someone to be the saviour during times like this and I say that from experience. Sometimes the best thing people can do is send something to the family and let them know you're thinking of them. Setting up this epic delivery schedule is so unnecessary, they probably don't feel like eating or anything and definitely wouldn't want people coming and going all day delivering things. I bet Erin hasn't got permission and has just made it all about her being the 'saviour'.She’s also organising for food and things to be delivered to the family.. makes me wonder if the family would want that right now
They also weren’t private earlier today, I got to see some photos of the beautiful girl. Rest easy
Erin's latest stories where she is saying what's the point of doing any tests anymore as nothing gets better and they don't do anything different for Lu. Like she complains when the Neurologist won't drop everything for her but now complains when the Neurologist wants to do some tests and see Lu to try and help her. You just can't win with Erin.
Don’t forget she’s complaining that it’s 2024 and no-one has invented a way for them to have a camera recorded eeg at home.
Now Erin, I’m no neurologist but the reason you wouldn’t be able to do those camera recorded eeg’s at home would be because there are so many inconsistencies in the environment ect
Yeah that part baffles me also considering she thinks technology should be more advanced but doesn't utilise the technology available to her such as vaccines. It's always on Erin's terms and she is so critical of the health services and it makes me so angry, it's so unfair! They're trying to help Lu.
You can get them done - you just have to pay for them and god forbid Erin would spend a penny on Lu!
seermedical.com - my toddler is booked in for one soon
Her whole ‘why does the neurologist want to do more tests’ is crazy.
if Lu’s had no seizures for over 12 months, and is now having them again, of course they want to run some tests!
Lu’s not being treated as a guinea pig, they’re trying to understand what’s happening
if Lu’s had no seizures for over 12 months, and is now having them again, of course they want to run some tests!
Lu’s not being treated as a guinea pig, they’re trying to understand what’s happening- Status