Autism moms and advocates

[anydaynow]

I have a non speaking autistic 7 year old daughter. She has a lot of needs and faces challenges every day because she’s living in a world that is not built for her. I am her full time carer. I know exactly what it’s like but I would never in a million years make a social media account and call myself an advocate if all I did was complain about how my life is affected by my daughter. How can anyone not see how wrong that is.

Let me say it this way. Faces by Grace, Rachel Gorry are women who get slated over their parenting and having their kids on social media. Everything they do with their kids is talked about here, so why is it ok for a mother of an autistic child to do it? None of their kids give consent or are not able to, imagine FBG came on and complained and cried everyday about her kids. She would be crucified and you all know it.

My point is yes its really tough having a child with additional needs and we have a right to express our feelings BUT not on social media to thousands of people. My daughter is not a neurotypical child that’s damaged, she’s autistic. I see her for the things she does and can do, I don’t cry to strangers about the things she can’t I accepted her for who she was a long long time ago.

This is not just about Elaine it’s all of them and as I said above actual autistic teens and adults don’t agree with them.

 

[KBYE]

First time posting. My little one is autistic and also happens to have a Co-morbid condition such as Elaines children.
I found Elaines page to be a great source of knowledge and I have messaged her for advice on things when I wasn't sure who or where to ask and she has helped me and I don't know her personally.
I like Elaine and yes people might find some of her stories negative but she is showing the reality of her life. Her children both seem well cared for and loved.
I can understand where people are coming from saying the kids shouldn't be filmed. Alot of bloggers with neurotypical kids film their children I don't see them getting as much stick. Maybe they are. I don't know.

My canine companion - I have heard nothing but awful things about them as a charity . Word on the street is there is alot of bullying going on there.
I seen one of their 'qualified' dogs once who jumped all over someone who greeted them. Seems to be a money racket.
Other (better) charitys match the child to the dog and don't expect people to raise extortionate amounts and don't drop the dogs from training courses if you haven't spent X amount a year on them.

Myboyblue- followed years ago when my child was diagnosed. Quickly unfollowed. Found myself wondering if what she posted was even true. I don't think anyone could be that negative or have so many negative experiences.
I loathe when people ask me if I follow her once they hear my child is on the spectrum. It's like she's the poster person for autism in this country now.

I really like linzi and love hearing about Jamie's progress updates. Also a fan of Queen overshare.

 

[Rosieposie 74]

Might get lynched for this but.. The whole assistance dog bollox... Yes.. I understand for a severely autistic person.. But for those who are high functioning I think its ridiculous... An over priced dog with a short life span because of the breed.. And a waiting list... I know of a few that have one and they'd nearly expect you to cross the road to make room for them.. We have to rescue dogs here who give the same amount of love etc... I honestly believe its like having a designer bag.. Just an accessory.. Óhh.. Look at me.. Maybe its because I'm at it so long.. Its jmo and some might not agree and that's ok too...

 

[anydaynow]

None of these are autism advocates. They use their social media as a platform to show hard THEIR life is with autistic children. All we ever hear from Elaine is her complaining about her children and how difficult her life is with them. She's still hasn't accepted her children for who they are even after all this time.

I am not saying her feelings aren't valid but she is not an advocate or helping to raise acceptance for autism and most of these "autism moms" are the same it's all about them. Have a look on Instagram and Twitter for autistic parents of autistc children and you'll see how different it is. Autistic people are very much against accounts like Nicole's and Elaine's. My daughter is autistic and the best thing I did was learn from autistic people on social media

Also there was a lot of drama on one of the Facebook groups about nicole getting the service dog when she did. People who had raised the money and were on the list before her caused uproar over it.

Nicole is definintely not the person everyone thinks she's is, linzy and a few others fell out with her over that whatapp group. She's constantly trying to go viral with her son, his special interests are amazing but she uses him as inspiration porn constantly. I just can't stand these parents exploiting their kids.

Apologies for the essays it's just a very personal and touchy subject

 

[Rosieposie 74]

Great thank you

So to start what’s ppls thoughts on Nicole from my boy blue? What would ppl like to see from the mums and dads that blog about their daly life with children with autism? Do ye find some of these accounts have tried to jump on the insta blogger band wagon and no longer advocat for autism but lurk for freebies?

Quite honestly.. There are a couple of them full of shit... You'd think they were the first parents to have an autistic child.. Full of self entitlement... I'm a mum to a 21 Yr old autistic young adult and have never felt the need to do what they do... I unfollowed a long tíme ago

 

[Ihavenoideawhatiamdoing]

Autistic adult here - what really annoys me is adults calling themselves an autism mum, your child is autistic not you, filming meltdowns and woe is me my child is autistic attitude. hashtag #actuallyautistic will find you the adults hopefully.

 

[Teaspillingtheory]

I'm not a fan of Elaine, don't like the restriction breaking etc but come on! How are people without additional needs kids supposed to learn what its like for our families if people like Elaine and Lenore just show the "good", i know several people close to me would never know half the things that happen in my house, unless they actually see them. Also telling a parent of a child with severe additional needs to accept it and get on with it, HELLO, maybe you have been able to magically accept this completely different to what was expected and extremely tough life but others can't do that so easily!

 

[Whitefloor]

Anyone remember a couple of years ago when fota island announced their autism friendly hours? Nicole was on ranting and raving about how disgraceful it was that the hours were first thing in the morning and not inclusive then the next week was out there on a #gifted visit and suddenly it was brilliant. Can't stand her since then. I've a bit rileys age with autism and I feel his life is hard enough without 1000s of strangers knowing all about his bad days and his worries and how stressed out is mammy is

 

[Mona86]

Nicole is an attention seeker. As godmother and aunt to a non verbal autistic boy aged 8, I’m not undermining or igniting autism is very hard. But I think it suits Nicole to have this in her life. She had made it her whole life. She wants to argue everything from the eyes of autism, hoping she will go viral. There used be a WhatsApp group with Sharon (our wheels big journey) and Lisa (my small wonder) and apparently Nicole always wanted her situation to be worse. If she hadn’t posted in a day she would expect them to be like ‘ are you ok hun’ etc . She doesn’t want to raise highlights for autism she’s seeking fame as she has made this her whole life. You can be an autism mom/parent and still have friends / a job / a house of your own - it’s hard. But you don’t have to make it all you are & then be bitter

 

[#obsssessed]

A thread to discuss the insta pages who talk about life with a child/adult/sibling with autism.

I hope this is ok to create as some of these people were being discussed on other threads!

I’m an ‘autism mom’ myself!

it’s not about the children themselves but the people who created and run the pages.

 

[Mary.M]

That’s awful if all that is really true my canine companion should be investigated that’s so unfair on ppl anyone that’s applying for a dog obviously needs one so what makes one persons needs greater then another and why should anyone out side of the organisation be allowed to dictate who gets a dog and who doesn’t and if Nicole did tell someone she has it harder then them because their child is verbal and hers isn’t she obviously isn’t that educated in autism just because a person on the spectrum is verbal doesn’t make their needs any less then someone who isn’t verbal

 

[Aruba]

My son has autism so I know them all. I have followed all mentioned at some stage.

Joining the dots is another account that absolutely hates the hand she has been given and I find all her posts overly passive aggressive and mostly defensive.

Lenore just makes me anxious. I feel I am waiting for her to have an absolute breakdown. What she has taken on charity wise is mind boggling. Commendable ....but how does any of it benefit her family.

I like Elaine a lot. Her children are divine.
However.......every time she does a big snot of a sniff, I want to reach down the phone and throttle her though Is she not aware. OMG!!

 

[Repealtheinfluencer]

It def wasn’t the lady from joining the dotz, it was another girl who went by Lizzie Raisin. She seems to gone off insta now

She not she's still there Lisa Curran

Right with Nicole My Boy Blue, NO CHILD is worse than her son, her son is the only child in Ireland fighting for services etc. The reality is HUNDREDS of families across Ireland are fighting for services no matter how big or how small. She looks down her nose at ANYONE who dares come up against her. She saw his interest in supervalu and the attention it brought and ran with it for the freebies. She cute out, anything that is on social media she will turn it around in a sob story to post. Her fight for Riley to have a school place???? He had TWO places for school... TWO.. Riley buying a 2,000 euro worth of a phone didn't happen. I could tell more about her but what I do know in the autism community she is not well liked

 

[Bombdee]

I have a child with asd and have followed all of these pages over the years(dip in and out) Nicole my boy blue has always bothered me and I can’t put my finger on why she has always given off this passive aggressive attitude but all that she wants is the adoration, likes etc from other people and how she does this is by always giving off this persona that she is fighting this fight for all of us which I don’t for one second believe!

 

[#obsssessed]

Might get lynched for this but.. The whole assistance dog bollox... Yes.. I understand for a severely autistic person.. But for those who are high functioning I think its ridiculous... An over priced dog with a short life span because of the breed.. And a waiting list... I know of a few that have one and they'd nearly expect you to cross the road to make room for them.. We have to rescue dogs here who give the same amount of love etc... I honestly believe its like having a designer bag.. Just an accessory.. Óhh.. Look at me.. Maybe its because I'm at it so long.. Its jmo and some might not agree and that's ok too...

I agree mostly with your point re the dogs seems fishy to me that it’s all the people with a fair few followers that get them especially the ones from the my canine companion charity. I contacted them about a dog but they say there waiting list is closed since 2016! So how r all the insta mums getting them??? Easy for them to raise €10k needed!! I wouldn’t have a hope of raising that kind of money

 

[Sandyclaws]

I'm an autistic mother to autistic children.
I wouldn't dream of splashing their faces along with diagnoses on a public page.

I did set up one myself to highlight that autism diagnoses in adults or children are not the end of the world.
I haven't, and won't, show their faces, or any meltdowns. No one needs to see them, and I don't need the judgement from people who don't know us and know what works here.

I was diagnosed later in life. To the above poster who asked was this in fashion now?
No it's not, I got an assessment because I've spent my life feeling like a freak and a weirdo, the diagnoses was both expected and a huge relief at the same time.
I am weird, but there's a reason for my quirkiness and it's helped me love myself in a way I had never previously.

It's also given me a piece of paper, that if I go back to education or work outside the home, I can present to those in charge and show that I may need little allowances, I might not operate as fast as others, but it would be perfect.
There's no allowance given for "I THINK I might be autistic"

 

[Taliaivyx]

I dont follow any autism mammys on Instagram I did once and I felt like I was comparing them to my little one like why can't he do that or say that or do this himself. My brothers three kids are autistic one is quite severe. I genuinely think everybody's journey is different I've learned slow and steady does it. Some days I feel like banging my head off a wall and locking myself away and just having a good cry then theres days a simple hug from him for nothing makes up for the days that I feel I'm getting nowhere. Since the weighted vests he is wearing hugs have got scarce mind you lol

 

[Ppeach]

This, for all of them not just Sharon...

 

[Tea Towel]

Does anyone else find Sharon from our wheely big journey to be a dose? Sorry now, I know she’s extremely sensitive so I won’t say too much in case she reads here but them stories this evening spouting shite about not wanting to answer someone’s question about what Noah’s diagnosis is, first of all it’s out there and very easy to find second of all, she doesn’t want it to ‘define him’, load of bull it’s such a rare and not widely known syndrome that 99.9% of people aren’t going to define him or make presumptions about him based on it, as they are completely unaware of the details of the condition. Why doesn’t she just tell the truth, she wants the page to be all about Sharon and her aspirations of being a blogger, she has 0 interest in raising awareness of Noah’s condition or the reality of life in Ireland as a young boy with different mobility needs. People may hate on me for this lol, I find her sooo self absorbed

 

[Mary.M]

Nicole is an attention seeker. As godmother and aunt to a non verbal autistic boy aged 8, I’m not undermining or igniting autism is very hard. But I think it suits Nicole to have this in her life. She had made it her whole life. She wants to argue everything from the eyes of autism, hoping she will go viral. There used be a WhatsApp group with Sharon (our wheels big journey) and Lisa (my small wonder) and apparently Nicole always wanted her situation to be worse. If she hadn’t posted in a day she would expect them to be like ‘ are you ok hun’ etc . She doesn’t want to raise highlights for autism she’s seeking fame as she has made this her whole life. You can be an autism mom/parent and still have friends / a job / a house of your own - it’s hard. But you don’t have to make it all you are & then be bitter

Yeah I think she’s definitely in it now for the fame maybe when she started it was to help raise awareness but I definitely think she’s lost the run of herself as her account got bigger I was very annoyed when she was giving out over the July provision program this year now don’t get me wrong it was a disaster for many families but I just felt because it was of no benefit to her she was giving out but if it was of benefit to her she would of been on blowing it up that it was the best thing ever I feel she does the same when she’s gifted autism friendly toys there amazing and the best thing ever she never gives any negative feed back and that’s very misleading for families of children with autism I’m not saying there is anything wrong with the products but when she’s gifted something she is ott on how amazing they are when maybe you could get the same thing cheaper on another site