little.lulu.love : Most liked Posts

I’m new here and feel like I can’t really snark on Erin because it hits close to home. My son is older than Lu but also has pretty significant epilepsy. His impairments are no where near as serious as Luella’s but we’ve spent a lot of time in hospital and my son has much much longer seizures than Lu.
Anyway, someone posted above about how Erin said Luella has drug resistant epilepsy but she still has some improvement. The definition of drug resistant epilepsy is not gaining full seizure control after a trial of 2 different medications. So Luella is definitely in this category.
I can fully feel many of the emotions Erin talks about but if the neurologists are saying your child needs surgery, you do it. We follow whatever the doctors recommend for our son. It’s exhausting for the whole family. But Erin seems to have a lot of help (lucky her, we don’t). But the help she really needs is therapy and a lot of it. She’s going to screw Tom up if she doesn’t sort through some of these feelings.

driedapricot said:

I don't think it's OK, I just don't think it's sooooooo terrible, in the scheme of things -- and I'm sure the nurse didn't go home and cry about it, like you seem to be.

Click to expand...

I'm sorry but as a nurse myself I've recently lost a colleague due to the strain we're under and this was what put her over the edge. Don't defend someone's horrible treatment and say 'it was just over the phone and I'm sure she didn't go home and cry about it' because sometimes it's things like that that break us

gintonic said:

Absolutely she’s going to be angry and negative towards the hospital system and surgeons, she’s the one that has ultimatum made the choice to postpone and now Lu has deteriorated so much thanks to her own mothers inability to make an decision.

Click to expand...

I agree with this. Surgeons (multiple, in different states, countries, medical systems) ALL recommended this surgery as Lulu's best option TWO YEARS ago. Look, I don't think doctors are gods - they are infallible humans just like the rest of us. So I don't completely discount Erin's refusal to unquestionably accept anything and everything doctors say. However, the consequences of her deciding that she knows better than experienced, seasoned epileptologists and neurosurgeons the world over has caused Luella irreparable damage.

The likelihood of surgery being as effective now as it would have been two years ago when it was recommended are slim to none. I am not saying that the decision to remove half your childs brain is easy, or that it should be taken lightly. But the odds were against Luella from the beginning in terms of the likelihood of seizure control by any other means (CBD, medication, alternative therapies etc). Sure, surgery may not have had the outcome they had hoped had they done it two years ago when first recommended - I'm not saying that it would have cured Lu, because no-one can possibly know that. But the CHANCE of it helping her two years ago, versus the CHANCE of it helping now...I'm not a neurosurgeon, my educated guess is those figures are vastly different.

No-one envies Erin's position. Who would? No-one wants to make the decision to remove half their child's brain. If there were no consequences to waiting, then none of us would be questioning Erin's choice to forgo surgery for so long at all. But there always were going to be consequences to waiting, and this is what Lulu is now, horrifically, experiencing. So that's my gripe. She bet all her money on the 'I can cure my daughter because I know better than everybody' horse, but that horse was lame, limping, had pneumonia and was blind. It was never going to make it out of the stalls. Just because she loves that horse, doesn't make it a good decision to risk your daughters life, and quality of life, on.

So, at the end of the day, do I have compassion and sympathy for Erin? Sure. I'm a mother. I'd be a monster not to. But do I think her daughters life could be drastically different, and the outcome of surgery drastically more positive, had she taken the learned advice of experts in the field and made this purely about her daughter and not how she herself felt? Absolutely.

God she is a horrid bitch. Really fucking sinister and scary.
Consciously chooses to not get Lu the surgery she needs and then blames everybody else she can possibly think of, the birthing staff / vaccines / her neurologists, for the life Luella will have to lead because of her own decisions. Complains about how hard their life is while having the luxury of a night nurse and a day carer, parents at their beck and call, are wealthy enough to build a custom home to accommodate their daughter in an upscale neighborhood on a single income and she doesn’t have to be burdened by working outside the home. Runs the day carer off due to her own horrible, toxic behaviour and then has the brass balls to slag her off on socials. Opines about how happy she and Dave could be if they didn’t have to face coming home to Lu. Is so arrogant that she thinks she doesn’t have to be accountable for the tens of thousands of dollars people donated to her based on false pretenses. Admits that they haven’t considered Luella’s limitations in building this new home. This is fucking mind blowing to me. This would be the absolute starting point and entire design brief for any other family lucky enough to have the resources to build custom but it never even entered her mind. Like, WTF?? Is she hoping Lu dies so they don’t have to worry about accommodating her limitations??? Seriously! That’s not something I’ve ever said before, I’ve hesitated to make that leap because it’s just so barbaric. But every god damn thing she does and decision she makes is pointing to that. I really do think in Erin’s heart of hearts that she is hoping Lu passes and relieves them of their burden.

The absolute irony of her crapping on about where money goes during fund-raising!? What about the money from your GFM Erin!? Meant for surgery!? Many who donated have asked but got ignored.

Glass houses.

It really frustrates me that it seems the only equipment at a playground she takes Lulu on is a swing. She always harps on about a swing. Take her down the slide, lay in fallen leaves with and feel them crunch in your hands, let her dig in some dirt and get messy, sit with her on a seesaw and support her going up and down. Playgrounds aren’t just about the equipment, get out into nature with her. Sit on a flying Fox with her. Lay with her on a big nest swing and watch the clouds. It’s so simple, just enjoy your child. Far out, the possibilities are endless when you accept that you might have to physically facilitate these activities. I know a family with a severely disabled child with cerebral palsy, his life is limited, he will never talk, never walk, never eat, and I have never heard them complain once. They do all these things I have just suggested with him, they give him a full life regardless of his capabilities.

Jesus. A family holiday without your daughter? That’s like my husband going away for a romantic weekend without me.
And sure, holidays are nice but they are not a requirement. To me this is simple, they wanted a holiday, Luella makes it hard so they leave her behind. I mentioned many threads back that I agreed with other tattlers that Erin would be ok with Luella dying and I still think that. Also agree that if institutions were still around that’s where Luella would be, and they would visit once a month on a Sunday afternoon and believe they are “doing the right thing”. Erin’s disabled daughter ruined the perfect life she thought she was entitled to and she resents Luella for that. Erin really gets under my skin because I have epilepsy, diagnosed as a small child and can’t help but think about how I would have felt if my parents took my other siblings away on a holiday without me because of my condition. Most disabled kids already know they are different and as they get older can often feel like a burden on their families (I did) - this is how Luella will feel as she gets older, even if she can’t verbalise it, she will know and will also sense the resentment from her Mum.

I don’t think she’s reading Tattle. I think she is (quite rightly) getting slammed in her DMs.

screenfreelookatme said:

Erin is the one that wants to send Lu to a mainstream school! Not that she had looked into schools properly yet . It’s just setting her up for failure in so many ways. Special education schools really are special.

Click to expand...

I am a neurodivergent teacher in an alternate school setting for primarily neurodivergent kids! We fucking love a good party, and do anything and everything to celebrate and validate the diversity and variety of all of our people every chance we get.

Ignorant Erin can fuck right off, the only barrier to inclusion here is her attitude and ableism. She is deep in the stage of denial, but I have no sympathy left because other ignorant people will see her posts and think it’s permission to see being disabled as nothing but a tragedy.

Bellowingcow said:

Nah Erin. Tom isn’t starting ‘pre school’. He’s starting daycare. It isn’t a dirty word

Click to expand...

This! There’s no “pre school” for a 1 year old. Wouldn’t be an issue that she’s put him in care if she was actually doing anything for Lu or working but she’s not.

So now she’s got Tom in daycare, carers day and night for Lu plus grandparents. The absolute privilege and she dares to complain about needing a break.

Wow. An absolute new low. So she books a holiday to the Gold Coast knowing full well it’s hot, has sand which according to her are the WORST kinds of environment for Lu - so she leaves Lu at home. What the HELL. I am mortified!!!!!!!!

She feels so fine roasting the kid who puked in the pool, but can’t put 2 and 2 together to figure out her own son is sick (fever + vomit) & should never have gone to swimming lessons in the first place. She is an A grade idiot, this one.

Honestly, Erin should have been well prepared for the outcome. Everyone knows Capacity Building funds get drastically reduced (rightly or wrongly, it’s just how it is) once a child starts school. As parents we desperately want our child to still receive the 3+ hours of therapy a week we managed to provide them with prior to school, but the reality is - and I think this is NDIS’s logic as well - they are in school 30(?) hours a week, not including travel/transport, and getting ready for and winding down from. Kids simply can’t sustain the same level of therapy, especially during the first year of school. For kids like Lu who will attend and SSP, they will likely receive therapies IN school, even if not by OTs etc, but by staff who have a great deal of experience in kids just like Lu.

Secondly, the carer (ie core funding)? Erin is even stupider than I imagined (which I didn’t think possible). She has got to know that people from the NDIA are all over social media accounts like hers, and see that she is a lady of leisure and simply doesn’t WANT to care for her daughter. Lu is disabled, no-one is arguing that she isn’t. But this 24/7 carer business that Erin demands is absurd. Their rationale with cutting core for Lu is likely that Erin will now have at least 30 hours per week of Luella in care (school), and thus is getting a break from the extra care Lu needs compared to a typically developing child. But like someone above mentioned, ya gotta actually parent occasionally!! She has absolutely shot her self in the foot with the constant posting about both her kids being cared for (one by NDIS funds) so she can run, go on date nights, get massages, and rest.

I don’t see this reduction in funds causing Lu suffering, EXCEPT for the fact she now will be required to endure her mothers disdain, I mean, care, rather than being with a carer who most likely shows her more attention, love and support than her mother.

Yeah...for those of us who have been following for years, this has been on the table for literal YEARS. This has nothing to do with covid, Christmas, missed appointments and 'incompetent' Neuros and EVERYTHING to do with Erin not wanting to proceed. She can throw up all the smoke and mirrors she wants but this was 100% her decision.

Also if you wanted an elective surgery for your child and your partner says no...you couldn't veto that without major waves and lawsuits. So I do feel sad for Dave being in that position.

If she'd think about someone other than herself for half a minute, she'd realise that the playground is PERFECT for Luella. Lu can crawl. She can bum shuffle. She can walk in a gait trainer or if someone holds her hands. She can sit in a wheelchair or a pram. She can access probably 90% of those things! The thing is, when you have a child with a disability, you need to be creative. You need to be an involved parent, which means you don't sit at a playground or park and think of all the things your child can't do. You get off your butt and off your phone, and you be your child's legs or their hands or whatever they need you to be so that they can have fun, regardless of whether the park or playground was designed with them in mind. What you DON'T do, is deprive them of opportunities and fun simply because the situation is no perfect. Because newsflash: this is life. Life is not perfect. Not for disabled people and not for anyone.
Enjoy your beautiful, daughter, Erin. She is capable of SO MUCH MORE than you give her credit for.

This makes me so sad. Imagine delaying the process, then finding out Lulu loves it and it is so beneficial for her, and then waiting 6+ months to receive funding when you have the means to buy it yourself. If only she had access to go fundme cash….

OMG her latest stories!! “I need a full time carer for Lu because I have two children,” basically. Like, no, Erin. Every parent of multiple children faces the EXACT same struggles!! NONE of it is actually related to Luella’s disability. The solution is you need to upskill your parenting and your capacity to manage your life (ie get therapy etc), and none of that involves the taxpayer. Get a grip, and get some help. FOR YOURSELF.

i’m actually shocked. i didn’t think she would ever go that low.

For the record and anyone who finds themselves here who also has disabled kids or knows people who do and are shocked by her admission.

We don’t wish that we didn’t have them.
We find so much joy in their joy and the way they perceive the world.
Yes we are tired, overwhelmed, anxious about the future, unsupported and many of us have given up our careers to be their carers.
We would love to take away their pain and their struggles, the challenges they face and how difficult the world is.
But.
We would never, ever wish them away.
We would never wish we never had children.
We will continue to give everything to make sure they have a chance at a happy future, even though lots of us will be caring for them until we’re too old or not here any more.
We seek help, advice and have respect for the specialists who take care of our kids when we need it.
We advocate and educate respectfully when we have the energy and mental spoons.
We don’t compete.
We care so deeply about those in our lives, neurotypical or disabled, because although we’re tired, struggling or anxious, we understand that every single person experiences those things regardless of their circumstances and life isn’t a competition of who has it worse. Yes our circumstances are different and often harder but it does not mean that those we love don’t have their own struggles too.

We’ve become experts at finding joy in all the little things and all the little moments.
We take each day as it comes, and every day we just keep doing our best with our circumstances.

And again- we would never. send. our. children. back.

She’s a monster.

Excellent summary and thanks for the new thread @santababy. Some other comments

-It appears Erin never looks after her two children by herself and blames “their different scheduling needs” as the reason why.

-Despite having one on one support workers during the day and night to assist Erin with L’s care. Erin wants L to go into mainstream schooling and clearly has not engaged with EDCP for L (or whatever NSW version is called)

- They have an architect and interior designer for their Sydney build but haven’t consulted with an OT

- it will be interesting to see if the new carer films enough content for Erin to post and pass off as though she was there for the moment like she did with C.

- Erin is delusional and will say things like L will never independently eat or walk whilst showing videos of L in a walker or chewing and swallowing food (I get not completely independent but still not the vibe she’s describing)

I came here at the start of the Q&A last night but had to stop reading her answers as it was too much.

I have a 2 yr old and a baby. My 2 yr old has complex medical needs which include seizures, tube feedings, oxygen support, and at this stage cannot sit independently let alone walk . He is also the cheekiest funniest little dude and made our lives infinitely better - both our kids do. I’m so lucky to be their mum.

I hope any of her new followers from the recent podcast got an insight into what a sad and horrid person she is through her answers last night.

I also hope C left for a better employment opportunity and that it wasn’t due to a toxic workplace. The way Erin put her on blast was awful I’m still shocked.

It is horrifying. I have actually been re-reading the older threads and I cannot believe EAA would have her on their board. Some crackers -

- didn’t get the proper motherhood experience with Luella, and finally did with Tom
- would not have had Luella if she knew then what she knows now
- works against every single specialist (some of which I have had the absolute pleasure of working with due to my daughter also having a disability)
- shows off designer gear in the thousands yet had a GFM
- said that Dave still loved Luella despite her disability (Father’s Day post)
- said that the 1000 days she had spent with Luella (up until that point) were hell

That’s not even scratching the surface. Absolutely repulsive behaviour which has made me, as a mother of a disabled child, feel like absolute shit that she thinks of disabled kids like this. EAA should be ashamed.