little.lulu.love : Most liked Posts

EggCarton said:

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.

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You’ve summarised my exact thoughts!

It’s also no secret that the NDIS is really cracking down on funding. They’re probably wondering how a child got that level of core to begin with.

When a child goes to school but especially a special school, therapies are all done on site. What does she need a full time carer for now!?

Disabled or not, we all drive our kids to and from school everyday. Disabled or not we still feed them, bathe them, love them. Disabled or not we still have to prioritise their needs.

I hope people’s complaints have gone on their file too. It’s quite frankly disgusting the amount of outsourcing she does for Luella’s care. You know she rarely has her own her own because when she does she posts about it. Lol.

She would honestly put Luella in full time assisted living and make her someone else’s problem if she could.

I for one with a child with significant disabilities who has had their plan substantially increased recently am glad it’s becoming a more level playing field. My child is similar to Lu with regards to his functional capacity (so far below peer level it didn’t even score), except he has a parent who gives him everything and has put their life ON HOLD purely for the benefit of maximising early intervention. The NDIA planner commended us on our commitment to his supports.

It’s never ever been about Luella. It’s all about Erin. Erin contributes nothing to the world? She doesn’t volunteer, she doesn’t work, she is an angry, twisted, bitter resentful person who honestly deserves a bit of a wake up call.

Luella is not dying. She does not have oxygen, trachs, etc. She is not palliative. She needs support yes, support that should be being provided primarily BY HER PARENTS. She is a beautiful, vibrant little girl who will likely live a valuable and happy life. Unfortunately for Luella she got the shitty reality of that as her mother.

Also. one last thought.
All calls to and from NDIS are recorded. They give you the spiel about respect and courtesy before you can even select an option to proceed. They would deal with some emotional and suffering people, i’ve cried to them before too… To be hung up on means Erin must have been downright disgusting. And to then post her NAME!?!?!?! Shame on you Erin

What Erin thinks she's doing:
- getting 'back' at them for how they treated HER.
- publicly calling them out because they didn't contact HER personally to apologise in the 24 hours they have been home (on a public holiday).
- "raising awareness"

Vs

What she is actually doing:
- making a public platform for people to air their grievances in a way that is neither constructive nor the validation they need
- increasing parents mistrust of a children's hospital
- decreasing the likelihood a parent will present to hospital with their unwell child
- ensuring that Erin (Luella) will basically be ostracised at all hospitals
- potentially open her up to defamation proceedings
- making all staff who have come in contact with her feel terrible. Doctors and nurses are humans, they make mistakes and they have feelings. Lots of nurses are the most empathetic people you can find. I guarantee you they will be feeling like shit and probably make them rethink their choice of career.

Didn’t have time to report the ceiling damage, but did have time to snap a quick photo to slam them on socials

As far as school goes my son goes to a special needs school and there are children there that are far worse off than Lu that go to school full time. And guess what? They are included in absolutely everything! Even sports day! You can't tell me that these beautiful kids don't get something out of being included and being in an educational environment. She's acting like it's a waste of time and Lu is so far gone she can't even have an education. Yes she fucking can! Just like she CAN walk (just with assistance), she CAN communicate (in her own way) and she DOES enjoy things (look at her beautiful smile when she's on the swing!). Honestly Erin can get fucked she has really pissed me off in the last 24 hours.

santababy said:

Here we go friends, yet again.. didn’t disappoint us

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Oh Erin, I think you’ll find other parents of children with a multitude of complex medical needs have been in your shoes. Yet they still include their children. What a stupid fucking statement. No one is going to be witness to your total reality because we are all different. Coping mechanisms, personality, resilience, temperament. Many people here come from a place perhaps further down the line, where it does look awful and ableist to leave your child at home and purposely pick a holiday destination they can’t go on. It’s fucking disgusting. Her lack of acceptance of reality is pathetic. Erin, you may be lucky to have Lu for a long time, maybe try valuing it. You may also only have her a short time, so of course, make sure you take plenty of trips away from her too . This woman is pathetic. The balls on her to be a board member for epilepsy action Australia. Unbelievable.

I’ve only just caught up on the Erin threads so excuse me for referring to something that has already been discussed. I was shocked to read that Rachel has walked away from this friendship (understandably). I never followed her but every now and again clicked on her page and read a couple of posts here and there and while I could see she was in pain I never grasped how negative she was until properly reading through tattle and then perusing more of her posts in depth.

The only reason I came across Erin’s page was through Rachel. Rachel who would visit Erin and her young baby Lulu not long after Mackenzie had passed away. Rachel would gush over this little bubba in her posts/stories and what struck me was how incredible it was for a woman to be able to show so much love and care for this baby when she had lost her own infant and had lost two very wanted pregnancies not long after. I don’t know if I could stand a moment around another baby while I was experiencing so much grief and yet here was Rachel doing it with such grace and love.

The fact Rachel has stepped away screams volumes about Erin’s behaviour.

dulcielaroux said:

The questions and answers tonight have been some of the worst yet. The one about her anxiety in Thailand - they checked in on the kids once a day? I don’t expect parents to spend their child-free time in constant contact but you’d think when you have a medically complex child like Luella, or even a child as young as Tom, you’d be checking in more than once a day. Who is empowering her to be this honest on social media? Who is congratulating and applauding this kind of attitude to her children? I do not understand how she thinks sharing this stuff is a good idea.

And as for her confusion about people’s interest in other peoples kids vax status, I’ll say two things - some of us like to know whether our child is at risk of being exposed to measles or meningococcal, and if one of my kids was medically compromised and vulnerable I’d want to know I was doing everything I could to protect them.

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Kids are actually the best at inclusion. It’s their parents that are the horrible ones that teach them otherwise, but for the majority, kids don’t see differences. My kid has no interest in other kids and is quite obviously disabled, and has one “friend” who he mildly tolerates, but his kinder group don’t bat an eye at him for all his differences and struggles, they actually try really hard with him. Erin is *that* parent! She sees her own daughter as “less than”, so she expects everyone else does. Another thing that is Erin’s doing.
And why the fuck has she never been to kinder to support her own daughter????? I’ve attended with my son all year, i could not IMAGINE having a paid person do it every single session. Wtf.

Faaaaaaaaaark me. I missed the stories earlier this week and just saw the one yesterday of Erin enjoying her practically child free holiday.
I thought she had left Luella in the room with a carer and I thought you selfish bitch then.
Came on here to realise that she fucking LEFT HER AT HOME!!
This fucking woman honestly. Absolute piece of shit. How much more "me" time can she possibly have? She has had so much time away from Lu this year alone. No village, fuck all the way off Erin. Just fuck off. I've had a gutful of this entitled narcissistic negative shunt.

This latest post has made me feel sick.

I work in healthcare advocacy and have for many years. I spend a lot of time working with hospitals, health departments and peak bodies around the country to improve the standard for sufferers of the condition my organisation works for.

This. Is. Not. How. You. Advocate.

Its not how you create change. You absolutely do not throw the word ‘neglect’ around like it doesn’t have incredibly serious implications for everyone involved.

Luella was in hospital for a week. She was quickly diagnosed, despite presenting on a weekend, and was given appropriate prophylactic and then specific treatment for the conditions she was suffering. She recovered and went home to be with her family. No neglect as far as I can see.

Whoever commented here earlier about her not blasting the GP who didn’t pick up the UTI is right. What about Erin’s responsibility for not vaccinating her children?

She’s friends with Rachel Cassella, she knows what good and appropriate advocacy looks like. She’s creating fear and distrust of a children’s hospital. Potentially putting children at risk because their parents avoid this hospital.

She wants to act like she knows everything about how the hospitals run and what they should/should not be doing. Then she’d know there are people employed, an entire team in fact, who’s job it is the handle patient complaints. There was channels for this that are available to her. The hospital is Required to respond to complaints made in this manner. What they can’t do is conduct consumer management via social media.

I’m ranting now but I am so so angry and sickened by Erin. Someone needs to step in and get her some support and stop this crusade. It’s an inexcusable waste of time and energy.

Didn’t she say recently that Lu wouldn’t be having a party because she doesn’t have any friends? I’m glad she’s going to be celebrating with her class!!

How heartbreaking to say she’ll never have friends!! Probably one of the major benefits of sending her to a special school is that she will have plenty of peers!! Erin is so sheltered. Lu isn’t actually that unique. Sadly lots of children have disabilities, but they still deserve to live rich and fulfilled lives!!!

inthecloset said:

It’s actually so upsetting to see Erin describe this fantasy world of what she thinks “normal” or “typical” children should do. Even Tom is not going to live up to the complete perfection she expects, and wants from her children. I was beyond sad reading the Father’s Day post last night. Children don’t OWE parents a perfect morning because it’s Father’s Day or a perfect first sibling meeting. They don’t owe you perfect - they don’t owe you anything . You chose to bring them it to this world and the pressure on little Tom is going to be huge. He got RSV at two weeks old and she just couldn’t believe she had “two sick children”.
It’s quite unsettling watching this unfold and I hope there’s some intervention soon and Erin gets the support she needs. She’s going to create massive trauma for her children otherwise. It’s never too late to make a change.

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If you ever read this one day Lu, as a disabled adult I welcome you into our community with open arms. You’re not a burden or a tragedy. You’re a beautiful disabled girl who has done nothing wrong. As a baby and a child you owed and owe your parents nothing. We love you so much and you’ll always be safe and cherished in our community!

Maisiemouse said:

Nobody deserves to cop verbal abuse in their workplace, regardless of their profession. Find it weird that you're defending that.

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As a nurse myself- thank you!!! Just because we choose nursing as a career, does not warrant the abuse we cop on the daily. It’s comments like the prev poster that makes people think it’s okay to use nurses as a punching bag (metaphorically speaking in this instance)

Does anyone else read this as a dig at NDIS?

Erin, maybe YOU should have started this process earlier.

It makes me so angry that she's whinged enough and been funded a night nurse. For what?? No infusions, no medications, no overnight feeds, no oxygen, not needing pressure area cares. There are SO many family's that actually need a nurse to be a nurse, and yet Erin gets to swan around having her full nights sleep and doing hours of marathon training on the daily.

“There were many reasons why we left her at home and i won’t go into it because it makes me too upset”

Sure Jan. You left your disabled daughter at home Erin. That’s it.

Another thought i had, on the back of her obnoxious self pats, how does this woman have the nerve to bitch about how hard her life is when she has enough support to go for 1-2 hours of exercise a day!?! she honestly has NO idea of her privilege. my youngest son is medically complex & disabled and i have him with me all the time; i even attend kinder with him. My eldest is autistic. I just can’t with her entitlement and privilege.

i don’t doubt the severity of Lu’s disabilities and how draining it would be, im living it too but with 0.005% of the help she has i would DREAM to have an hour to myself
She honestly is so out of touch with her “community”. Her privilege is so, so huge with their income and her full time support worker and their brand new home they’re building and her not needing to work - and again; not discrediting the fact her partner likely works hard in his job and that she has Chrystal, those are good things that everyone deserves, everyone deserves to have support and enough money coming in and not stretching themselves thin, Lu deserves to be supported and loved and cared for. But she can’t see that and it’s so yuck. Always whinging about her circumstances, health care, everything and yet always looking for head pats and validation!!! For such an “advocate” it really feels like she’s not even one of us down in the trenches of disability parenting, affected by cost of living crisis but unable to work because our kids require 24:7 care and there’s no one else to provide it, not enough ndis funds to stretch and certainly not enough for a full time worker. Erin, you’re not connecting with other families with epilepsy and disability, you’re alienating yourself. Wake up Luella is a beautiful child who needs her mum to at least see some positives and love her just as she is and stop whinging about her all the time or using her for clicks

I just can’t get over her complaining that a hospital servicing how-many-hundreds-of-thousands-of-children doesn’t suit her exact (unrealistic) needs when she’s literally building a brand new house where they’ve done nothing to plan for accommodating Luella’s needs and say well, she’ll just have to sleep downstairs…
Does she not see the irony?

santababy said:

Saddle up everyone! Here we fucking go

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Will this fkn cow ever take any responsibility for her actions that have caused Lu to no longer be a candidate for surgery. The doctor is a surgeon so why wouldn’t he say that. What does she want the surgeon to do if she said no to surgery and knows better. I hate her

jj4400 said:

Out to celebrate her dad’s birthday with Tom in tow but no mention of Lu… I get it might be a challenge to accommodate every occasion, but she is excluded so many times.

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I know! When we have family events, my disabled son is the first person everyone thinks of! "Where can we go that is going to suit Joe (not his name)?" Somewhere that accommodates my son doesn't mean every event has to be the Shine Shed. It just means we choose places that have an outdoor area where it won't matter if he makes a bit of a mess, or is loud. It means we do a 5pm dinner booking (we've even done 4.30pm before!) so that he's in good form and it's not his bedtime/he's overtired. We prioritise his needs, and EVERYONE has a great time. I always call the place beforehand and let them know that we have a disabled child with our group, and any access needs we have. EVERY. SINGLE. PLACE has been more than accommodating.

For my dad's 70th, we had a big family dinner at a really nice restaurant. They seated us outdoors, and ensured we had lots of space around our table so that if my son needed to be on the ground he had space to move. They were so, so great. Yes, it was SO MUCH work for me, helping to keep him entertained, regulated etc, but it was worth it for us all to be together. Other guests did look over at us fairly frequently, but it was truly with smiles rather than judgement/irritation. I will never be the reason why my son is excluded. Unlike Erin is with Luella.
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EggCarton said:

I know! When we have family events, my disabled son is the first person everyone thinks of! "Where can we go that is going to suit Joe (not his name)?" Somewhere that accommodates my son doesn't mean every event has to be the Shine Shed. It just means we choose places that have an outdoor area where it won't matter if he makes a bit of a mess, or is loud. It means we do a 5pm dinner booking (we've even done 4.30pm before!) so that he's in good form and it's not his bedtime/he's overtired. We prioritise his needs, and EVERYONE has a great time. I always call the place beforehand and let them know that we have a disabled child with our group, and any access needs we have. EVERY. SINGLE. PLACE has been more than accommodating.

For my dad's 70th, we had a big family dinner at a really nice restaurant. They seated us outdoors, and ensured we had lots of space around our table so that if my son needed to be on the ground he had space to move. They were so, so great. Yes, it was SO MUCH work for me, helping to keep him entertained, regulated etc, but it was worth it for us all to be together. Other guests did look over at us fairly frequently, but it was truly with smiles rather than judgement/irritation. I will never be the reason why my son is excluded. Unlike Erin is with Luella.

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I should clarify: I don't share this to toot my own horn, or my family's horn. Because we are honestly not doing anything applause worthy! All we are doing is ensuring everyone is included. That's the bare minimum, guys. I mean, come on, we are all parents here, or most of us are (I'm assuming, so sorry if I'm misguided), ON WHAT PLANET would you deliberately exclude your child from nearly all areas of your life? I think that's what makes me fume about Erin so much, is that she is always the first person to rip shreds off playgrounds or businesses for not being inclusive, and yet she does absolutely NOTHING to include her daughter in her own life.

I REALLY hope EAA has woken up to the absolute stupidity of having Erin and Dave on their board.
They are terrible, awful spokespeople for epilepsy and disability. They are a prime example of how NOT to be and parent.

trish_allstar said:

Erin, I've made some corrections for you.
Now before you come as me, I am a mum of 3 with post natal depression/anxiety I know too well that life is not all sunshine and rainbows BUT you really are like a black cloud. Appreciate those children, appreciate the little things, enjoy time together, look at how incredible it is you all got out of the house together. Any mum will know and appreciate how difficult that is alot of days. Stop the negative narrative and maybe you'll enjoy life a little more.

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Perfectly edited !!
I think this is what upsets me the most. I am widowed and solo parent to 3 all with neurodiversities. But I make the most of every outing, holiday and occasion and do it all by myself. My youngest is 6 and only 4 years old when my husband passed and my husband was so worried about leaving me to raise him alone w his autism and GDD. But he is doing amazing because I include him in everything and see the world through his eyes and am just so very thankful for you. I grieve for my husband heavily and for the family life we once had. But definitely not for my children who are very much alive and thriving. No wonder her friends who actually lost their children and have actual grief ditched her. It would be infuriating !!