Things people say....mini rant

[Tiff]

It makes me rage when people say that!

I had one friend tell me that an Autism diagnosis is just a way to take responsibility off the parents with how shitty they're raising them. That woman sounds like a douche.

 

[DonnaBallona]

I had one friend tell me that an Autism diagnosis is just a way to take responsibility off the parents with how shitty they're raising them.

nobody can seriously think that..... they must be a special kind of stupid.

we have heard many a stupid thing from strangers about being tube fed..... the one that gets my goat is 'what's wrong with him?'

that infuriates me...... nothing's WRONG with him, he's tube fed!

 

[mummy2o]

My latest one is 'at least they are roughly on the same level and can play together when she gets bigger'

Doubtful since Ossian prefers to play by himself and by the time she's in pre-school toys he might have grown up into the next phase of toys, with any luck.

 

[Menelly]

And as most autism moms will relate to my favourite :

"Oh, well that just means he's actually a genius!!

ERM yah, thanks, one Hollywood movie does not represent the average.

I have two Autistic kiddos, and this one makes me bonkers. My cousin is forever saying being Autistic automatically makes you a genius in "at least one thing".

I'm Autistic and while I can score genius on an IQ test, it's not done me a damn bit of good in life. :/

 

[Menelly]

I agree with all the other Autism mom comments.

My personal peeve is when people tell me that she doesn't "look" Autistic, or that she's too "esthetically pleasing" to have Autism. How offensive is that? So only "ugly" kids can have Autism? Really?

Also, Autism is NOT just your child drooling in a corner licking windows.

I'm also getting frustrated with the Mompetitions in the actual Autism community. Claire is high functioning in some areas, severely impacted in others. That's her. And to have other Autism Moms try to insinuate to me because she's getting better with language on how "lucky" I am makes me want to scream.

Shouldn't we be all in this together? Yes, she's making strides towards language. It is AMAZING. Please for the love of god do not dismiss her other impairments which greatly impact her life because she's FINALLY (at the age of 5) starting to get a grip on language.

ugh.

THIS THIS THIS! I hate "functioning labels". With a passion. I speak better than my son. So I'm "high functioning" and he's "moderate functioning."

But he can cook a meal without burning it, keep a clean room, remember to brush his teeth and shower, and follow verbal directions ALL OF WHICH I CAN'T. My sensory issues are about 200x worse. And yet, he's "moderate" and I'm "high" based entirely on verbal skill. It's so obnoxious.

 

[Tiff]

I agree with all the other Autism mom comments.

My personal peeve is when people tell me that she doesn't "look" Autistic, or that she's too "esthetically pleasing" to have Autism. How offensive is that? So only "ugly" kids can have Autism? Really?

Also, Autism is NOT just your child drooling in a corner licking windows.

I'm also getting frustrated with the Mompetitions in the actual Autism community. Claire is high functioning in some areas, severely impacted in others. That's her. And to have other Autism Moms try to insinuate to me because she's getting better with language on how "lucky" I am makes me want to scream.

Shouldn't we be all in this together? Yes, she's making strides towards language. It is AMAZING. Please for the love of god do not dismiss her other impairments which greatly impact her life because she's FINALLY (at the age of 5) starting to get a grip on language.

ugh.

THIS THIS THIS! I hate "functioning labels". With a passion. I speak better than my son. So I'm "high functioning" and he's "moderate functioning."

But he can cook a meal without burning it, keep a clean room, remember to brush his teeth and shower, and follow verbal directions ALL OF WHICH I CAN'T. My sensory issues are about 200x worse. And yet, he's "moderate" and I'm "high" based entirely on verbal skill. It's so obnoxious.

I agree. Or the assumption that "high functioning" means "easier". Sure, I may have some things easier with Claire, but I dunno.... its the connotation of it all. Just because some things are easier for her, doesn't mean that we still don't struggle.

Just today I spoke with someone who goes "Oh, she must be high functioning!" Like Claire had won the Autism lottery or something. Being around my child for a grand total of an hour doesn't make you an expert on how she is.

I've stopped trying to clarify to people now though. I tend to smile, nod and know that if they really are a part of our lives they see what she struggles with. If they don't, they're not that close to us and it doesn't matter.

 

[JASMAK]

High functioning and low functioning, I was told, is more about the level of mental ******ation, if any. So, I find the whole 'functioning' questions quite offensive altogether. When someone asks me I cringe.

 

[Peanut78]

We've encountered loads of these as well

A few that really bugged me:

"Gosh, you must be sooooo worried about him" - not helpful - what kind of reply do you expect to that

"If I were you I would exercise some tough love and not respond to him unless he uses words to talk to you" - yup, that will really help encourage him onto the communication highway seeing as he has a neurological condition which affects his motor skills including speech - this was said by a paed btw!!!

The other one that really bugs me is my mum's dramatic statements - she's always had a flair for dramatics, but I don't like that she uses my son to exercise these dramatic episodes . For example phoning me and saying tearfully that she's not been able to sleep all night because she's been so worried about T, how he's doing and what will happen to him

 

[Tiff]

Peanut, I get that from my Mom too. It drives me up the wall. Not to mention that even though my Mother and I have our issues, I still feel like she's my go-to for support. So when she's freaking out its hard for me to not freak out as well.

Jasmak - Yep, it makes me cringe too. Or when people try to pass off PDD-NOS as "easier" or "better" than Autism. Its ALL Autism now, but people still seem to think that kids with Aspbergers or PDD somehow function better than kids with the Autism diagnosis.

I will say, Claire was diagnosed moderate-severe Autistic and I've seen kids with Aspbergers who are in a MUCH worse place than she is. The labels drive me nuts.

 

[Eternal]

Peanut, I get that from my Mom too. It drives me up the wall. Not to mention that even though my Mother and I have our issues, I still feel like she's my go-to for support. So when she's freaking out its hard for me to not freak out as well.

Jasmak - Yep, it makes me cringe too. Or when people try to pass off PDD-NOS as "easier" or "better" than Autism. Its ALL Autism now, but people still seem to think that kids with Aspbergers or PDD somehow function better than kids with the Autism diagnosis.

I will say, Claire was diagnosed moderate-severe Autistic and I've seen kids with Aspbergers who are in a MUCH worse place than she is. The labels drive me nuts.

I hate labels too, I just hate the whole thing. Sam was recently accepted on the ASD pathway and his consultant and ASD worker both confirmed he is autistic but awaiting full diagnosis for where he is on the spectrum and if other diagnosis will be added like ADHD. He will be high functioning though.

I get such mixed reactions from everyone, some "friends" say "oh, so he does really have it then?" Like I was making it up before. I also sometimes feel guilty for saying he is autistic as I know so many more have much more challenging autistic children.

But I know how different my life is compared to those who don't have children on the spectrum. How much longer everything takes and how times like school holidays are hellish as Sam cannot cope with the extra people and noise. How our routines are rigid and how he wears ear defenders to bed. My SIL asked if Sam could stay over when we visited Scotland in the summer and I can't, the whole holiday experience is just stressful enough without sleepovers, it's sad. I get bitten and hurt weekly as do his siblings, today for example he lines stuff up, his brothers touch it, and tears and meltdowns follow. I can't just go for a walk to the park he will just run into the road or meltdown as something is different, so unless I'm one on one with him I can't go out with the kids, I have to have someone watch the twins for 10/20 minutes while I get him from school.

People don't get it and people are cruel. He isn't that "bad" but out life is very limited because of it. I can't just pop to the shops.

The most upsetting is when people say comments about autism and more so ADHD ebbing made up, comments like "there was no ADHD in my day, kids then just got a smack" ... I don't use autism as an excuse, and actually the twins shave destroyed far more expensive stuff than Sam ever has, the twins are busy though, not autistic and because I'm running between Sam's needs and theirs they get more unsupervised time than I'd like so they get opportunity to get into trouble more

I also struggle with the fact people have a very stereotypical view of autism and think there is a cure. I get people say stuff like, have you got lights and a bubble tube in his room, they will cure him. When I try to explain sensory issues can go either way, so some seek it out and others avoid lights,sounds etc, they ask, are you sure he's autistic? Argh.

Sorry, for my rant, just sick of people making comments like I'm lying, I have reports and feel like carrying them around to prove it. Then on the flip side I think it's none of your business anyway.

 

[JASMAK]

Today my coworker showed me a news article on her cell phone. It was a mom who killed her son with autism, then herself. Her suicide note said she didn't have enough support for her or her son.

She told me to read it, then after she said, 'make sure you are getting the support you need'.

Sigh.

 

[Tiff]

Oh because THAT'S helpful. Ugh!!!

Eternal, I wanted to comment but you really said everything I felt/thought.

 

[aliss]

Today my coworker showed me a news article on her cell phone. It was a mom who killed her son with autism, then herself. Her suicide note said she didn't have enough support for her or her son.

She told me to read it, then after she said, 'make sure you are getting the support you need'.

Sigh.

Did she even read it herself? The woman had been seeking support for years.

Which brings me to my ultimate pet peeve:

if you ever need help, let me know!!!

And....... No help. Excuses. I gave up!

 

[JASMAK]

Today my coworker showed me a news article on her cell phone. It was a mom who killed her son with autism, then herself. Her suicide note said she didn't have enough support for her or her son.

She told me to read it, then after she said, 'make sure you are getting the support you need'.

Sigh.

Did she even read it herself? The woman had been seeking support for years.

Which brings me to my ultimate pet peeve:

if you ever need help, let me know!!!

And....... No help. Excuses. I gave up!

I know, right?! You know who was there is my worst days? NO ONE. Pffft. The gvt is useless for support/help.

 

[Eternal]

Today my coworker showed me a news article on her cell phone. It was a mom who killed her son with autism, then herself. Her suicide note said she didn't have enough support for her or her son.

She told me to read it, then after she said, 'make sure you are getting the support you need'.

Sigh.

Did she even read it herself? The woman had been seeking support for years.

Which brings me to my ultimate pet peeve:

if you ever need help, let me know!!!

And....... No help. Excuses. I gave up!

Yeah, I've heard that a lot. No one ever even comes to visit. When I was pregnant with the twins people said, "I'll come out and help" and "you won't be able to get rid of me" and not a single person came to visit.

Whenever I'm having a bad time and say things are difficult I get responses like, "oh just go for a walk" or "go visit someone and provide service and that will help you feel better" ... Hello? I can't take him anywhere, school don't even have him his allotted hours!

 

[kit10grl]

I have been lurking in this thread for a while. DD doesnt have autism but we have been told as she grows often her condition starts to have a lot of traits in common with autism. But i do understand the lack of support. I'm getting very little help from anyone. DH's parents have both passed away. his aunt and uncle are both in their 80's so cant look after toddlers for any length of time alone and his brother is also disabled. My older sister is working nightshift and has two boys of her own and helps out whne she can. My younger sister is poilt rotten and so despite the fact her ex takes her son all weekend my mum is constantly babysitting for her becase she is a single mum and needs a break. My hubby is gone all day five days a week and i have two kids and am running about to hospital appointments all the time but am expected to just cope with it. The last few appointments where i havent been able to take DS to I have ended up withmy home start volunteers babysitting for me!

So frustrating.

Then i get everyone telling me how strong i am, etc and i just think well yeh i look that way to you because your not here when DD wont stop crying and DS is having a tantrum and i just want to shut my self in my bedroom while i sit here in tears myself.

Sorry for butting in but ive had a few 'things people say' moments this week and it made me think of this thread lol.

My mum was talking abot how we wont want more children and when i said oh we might have another you never know, she said 'oh you will adopt though you dont want to HAVE another' Erm yes because my DD is so horrible we wouldnt want to risj bringing another of her into the world. Oh and bonus points for making me feel likes its my fault again that here genes got screwed up.

And my friend has been openly using word Re$%^d on her facebook all week despite me posting several posts from Spread the Word to End the Word to see if she would take the hint.


GRRR

 

[sequeena]

Oh gosh I suspect the woman who gave you the link meant well but that is not the way to go about it and yes I also get the anytime you need help thing but this extra help is not forthcoming. I think a lot of people say it to make themselves feel better.

Big hugs kit xx this is for anyone who is struggling with the idiotic comments of others. I hate hearing you're strong - like I have any choice but to suck it up and get on with things.

 

[Tiff]

I got into an "argument" with a friend the other day, because I hate how much people share on my FB wall about how "God only gives special kids to special parents". It just bugs me. I am no more special than the next parent! She said I was, and I get what she was trying to say and it was super sweet... but at the end of it all this is my kiddo, I deal with her stuff.

I don't think that a parent who has a child with more severe symptoms of Autism is more "special" than I am. All I think when I see that is "Man, they're strong. Wow, how amazing is their routine? How CUTE is their kiddo?" I dunno, I don't believe in the Mompetitions.

But, I'm human. There are times where I see a child who struggles with things far greater than Claire does, and I'm thankful that I have what I have. I see kids who struggle with things (with Autism) who do far better than Claire does. But then I think "how awesome for them!".

I'm not sure if I'm wording this correctly, I just really feel we're all in our own battles... there's no need to try and compare who has it worst/better. Cuz really, who in their RIGHT MIND wants to "win" the "I Have It Worst" category?

But while I'm on my soapbox, I do try to understand that sometimes... people just don't know what to say. They've seen some inspirational quote on a FB eecard and it made them think of Claire. So they share it. I really do try to remind myself that those people, yeah okay they're not being very nice but they're not doing it maliciously.

Its the people (like my MIL) who backed away from us when Claire got her diagnosis, or the people (like my Mother) who blamed ME for Claire's behaviours that infuriate me.

I dunno, maybe I'm having a moment. I'm not going to lie, I get tired of the "special kids for special parents" memes that show up on my FB page. But at least those are done with good intentions. Its the a**holes who don't give a fuck or judge are the ones that drive me crazy.

 

[Tiff]

Actually, this reminded me of a blog post I saw and I really have to agree with the author.

I'm not a great parent just because I have to be

 

[maisie78]

Another favourite has become 'is she tired?' or telling me she is because Gabriella tends to keep her head down or sometimes her eyes are half closed. Doesn't usually bother me and I just explain that she is blind. But then sometimes it really pi#@es me off because some people are clearly judging me. Example the other day I took Gabriella to the park to go on the swings. There was a woman there with her grandson who was probably about Gabriella's age. I put Gabriella in the swing and the little boy pointed and said 'baby'. His grandmother said 'yes baby, she's sleeping' and looked pointedly at me. Yep because I am that awful a mother that I would put my sleeping child in a swing??!! WTF??!! I said actually she's blind with the sweetest smile I could muster and clearly this woman felt about an inch tall and really uncomfortable because she very rapidly left the park.

A bit mean of me perhaps but serves her right for jumping to conclusions and judging me.