Things people say....mini rant

[maisie78]

Seriously if I hear one more person tell me how Gabriella will be fine because she will never know any different, I may get violent!

I know they mean well but it just comes across as so damned dismissive. Yes I know she will never know what it is to see and so will grow up learning how to 'be blind'. But the way people say it is like they dismiss her disability, almost like it doesn't count because, hey at least she'll never know any different!

It is both naive and a little insulting for people to suggest that she won't miss what she never had. Do people really think that she won't one day wonder what a sunrise looks like, that she won't feel left out because she can't watch a film the way her friends do or that she won't want to see her Mummy's face?

So yeah that little sentence that people think is so comforting is just becoming an even bigger punch in my stomach every time I hear it

Anyone else want to share any little gems of wisdom they receive that wind you up please feel free

xx

 

[sequeena]

What an awful thing to say If people don't know what to say just don't say anything at all!

I hate to complain because I know people do mean well. Some of it I even hear from family. It is so frustrating and I want to shout. I do not wish for people to treat my son differently because of his disability but I also do not want them to brush it aside.

I often hear;

'Oh he'll grow out of it', 'he'll catch up', 'so and so didn't walk/talk/conduct an orchestra until such and such an age and they're fine now' - no he will not catch up and he won't grow out of it. He'll progress but he will always be behind.

'He doesn't look disabled' - I didn't realise all disabled children needed to be in wheelchairs or be tube fed etc

'Dysmorphic features? I can't see them. Are you sure?' - Yes. His paediatrician is quite sure. She is very qualified in what she does. I'm certain she knows what she's talking about.

'Do you get DLA (disability benefit)? What rate does he get?' - what an extremely personal and rude question. Like my son needs to receive that benefit to be disabled. He does receive it but I don't talk about it. I don't go around asking how much people earn or what benefits they receive!

This conversation sticks in my mind and hurts me to this day. We'd just got out from an important hospital appointment and I was already feeling like a kicked dog.

Some random: What's his name?
Me: Thomas
Some random: How old is he?
Me: 2 (I can't actually remember I think he was a little younger)
Some random: Can he speak?
Me: No
Some random: What's wrong with him?

From that 30 second convo she automatically assumed there was something wrong simply because he couldn't talk (and only has a few words now. He signs better than he speaks). I was furious.

 

[maisie78]

People are so thoughtless Can't believe people have asked about his DLA, how rude! I go back to work next week part time after 20 months off so expect me to post to this thread again, A LOT!! x

 

[sethsmummy]

hi ladies People can be such Twats sometimes!

we have been told by SALT/EV/Peadiatrician that seth is on the autism spectrum but we have to wait over a year for the "official" assessment. We have been told to treat him as though he already has it. he has a delopment delay and a Speech and language delay too. he is also "over sensitized" as the occupational therapist put it

Some of the gems that really bug me

"oh he doesn't look autistic"

"why's he not talking properly"

"oh do you not feed him enough" - this is after them asking how old he is and shocked to hear he is 4.

" A Good smack will cure that problem" - no sorry i will not smack my child for having a sensory melt down

"you do nothing but mody cuddle him" - oh im sorry i comfort my Oversensitized son when things get a bit much for him

"force him to eat it.. he'll soon learn" - no he wont, it will only succeed in making his diet even more limited than it already is

"if he wont eat it then tough.. dont give him anything else" - oh yes because it would be great for him to loose weight when hes only the average weight of a 1 year old

"get that disgusting dummy off him" then goes upto seth "get it out.. your too old for that" -um sorry my son has a need to chew.. and id much rather he chew on a dummy than his clothes until i can get him a Chewigem next month

"oh I wish i got the money you did, its so unfair" - oh i wish my child didn't have special needs.. then he wouldnt need the money.. ill quite happily give you the money if you can sort all the problems out! no? didnt think so.

"why's he having a nap.. he shouldnt be having a nap at his age" - erm hes not much bigger than his little brother.. so he needs a nap! add in his lack of food intake and im sure youd be needing a bloody nap too. hes like an energiser bunny so wont take him long to burn off what little calories he actually consumes!

 

[sequeena]

I get dummy comments too. Thomas is very tall and looks around 3.5. A man once took his dummy from his mouth and T almost bit him. WTF are these people on?! They are our children!

 

[sethsmummy]

oh my gosh seriousy :0 Id have told him off for touching him I cant stant people touching seth because it scares him. hes not ok with people entering his personal space unless hes invited them to. I do agree that seth is a bit old for a dummy but until i get his chewigem necklace and bracelet it will have to do. Wonder how many people will comment on his chewing a necklace

 

[maisie78]

Urgh! Why do people think they have a right to comment on other people's parenting choices. As for taking his dummy from him I would go mad, how dare they touch your son grrr!

 

[JASMAK]

The one i hate the most is, 'could be worse'.

 

[essie0828]

My twit of an aunt actually told me that DD will walk/ talk/ develop in her own time. That we push her too much. Are you kidding me?! The only reason DD has just begun to walk a little is because of 6+ months of very intense therapy. And the topper is this lady's family runs a daycare. I csn only think of the kiddos that are being left undiagnosed and untreated because they will come along in their own time. Stupid twit. Thank God someone hasn't touched my kiddo or any of her chewies. I would seriously tell them if they touch my child again I will take it as they are trying to harm her and I will act accordingly. I have had people ask if she's chewing on a dog toy as some of her chewies resemble them. "Yup, she took it from the dog so I let her keep it." The look they gave was worth the smart ass reply

 

[maisie78]

Yeah we get that one too along with 'just let her be a little girl' from OH's parents. It's not like we have her in pre-school Japanese or Baby Mozart classes, she has physical and occupational therapy to help her gain confidence in using her hands and she has only just begun to stand without a frame at 18 months...grrr

 

[Eternal]

i hate peoples comments too, "he doesnt look autistic" or "look, he made eye contact, he cant be autistic" and the ones that drive me bonkers "have you considered his diet" argh, i know people mean well, but we are not stupid, i know how to feed my kids well, and my other children dont have autism, then everyone has a "Cure" ... i just grin and nod but seriously had enough!

whatever the diability you get a shed load of horrible and unhelpful commnets, but when the disability is invisable or less obvious its ten fold, like people need proof.

As for DLA questions, thats just rude, Ive delibrately not told people because ive had people make commnets about how its terrible people claim DLA for things like ASD and ADHD and they should just get on with it, so ignorant and uneducated and one come from a friend who is training to be a Health Vistor, so yeah, we keep quiet about DLA.

People just dont think what they are saying, they just say stuff without reallu thinking tht it implys.

 

[aliss]

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.

 

[Yellow500]

I try not to get too stressed with well meaning comments. I know people say stupid things when they just don't know what to say but are just trying to be kind. They might sometimes sting a little but I try to put them out of my mind.

The comments that annoy me the most are the dismissive ones, such as 'he doesn't look autistic' or 'he's not that bad, it could be worse'. They should try living with him for a day and then tell me it's not that bad! It makes me realize just how naive some people are.

 

[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.

 

[Eternal]

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.

I know what you mean, I've seen so many people competing on who's child is the worse or more severe, who has it worse, etc. Why? It's a massive spectrum, and each child so different.

 

[Shezza84uk]

It really annoys me with the "she doesn't look Autistic" comments it really drives me nuts. I feel I have to justify her diagnosis.

 

[JASMAK]

I agree with all the autism comments too. Someone will meet my daughter for two minutes and then tell me, "you cant tell" ...Or, even my best friend will say, 'I totally get it, my kids have tantrums too'. No, you don't get it. Then there's the countless, "oh, I read an article, or saw a show, or read a book..."

 

[Eternal]

I agree with all the autism comments too. Someone will meet my daughter for two minutes and then tell me, "you cant tell" ...Or, even my best friend will say, 'I totally get it, my kids have tantrums too'. No, you don't get it. Then there's the countless, "oh, I read an article, or saw a show, or read a book..."

Yeah, I get my mums friend calling saying "check out this documentary on autism", I smile and say thanks when I really want to say something like "no thanks I live with it everyday I don't need to watch it too"

 

[Tiff]

I get those too. Or have about 4 or 5 people send me the same links to some article about changing diets etc. My Mom for the longest time felt I just needed to read to her more, and clearly I do not read enough to her because if I did she wouldn't have these issues. Nothing like basically saying I'm to blame for my kiddo's struggles because I don't do enough with her!

(Literally got told that. I don't do enough with her and leave her to her own devices, so she 'acts out' to get my attention. )

Ugh! The things people say!

 

[JASMAK]

Have to add one more which was fairly recent. .. only a couple weeks ago. It was at my 3 year old's ballet. One of the other parents is a teacher at my older kids school and I went to highschool with her too. So she knows about Makena and her autism as she is in the school and although she isn't her teacher, it's a small school.

Anyways. .. so this at day at ballet her and I were chit chatting about something that I cannot remember. .. about kids obviously. I said something about how my kids were similar. ... and then added 'well except Makena' and her and I laughed. It wasn't making fun of her but rather two moms understanding how difficult it was. This other mom piped in 'why? Why can't she? '. So knowing this lady was a social worker I wrongly assumed she would get it and told her 'Oh, My daughter has autism'. She then said, 'why do people ALWAYS tell me their kids have autism? ' Then she asks me. ... 'really. .. what is it about autism anyways. ... why is there SO OOO many of 'them'.