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SN children

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Original poster

Does anyone else lose the plot with "helpful" comments?

23 replies

PicaK · 17/02/2015 22:47

I blew top this weekend with a family member who was trying to be helpful I know but whose comments exasperated and hurt me so much (from the obvious assumption behind them) that I snapped.
Consult paed appt next week. DS all kinds of challenges of which extreme food control/sensitivity is the largest. All of this explained repeatedly and at length over last few years.
Suggestion "When you go, why don't you ask them if they can try something new for his eating?"
Would anyone else have flipped? Or understand why I did?

OP posts:

ImBatDog · 17/02/2015 22:51

i just grumble quietly, most of my family understand my sons food issues (restricted eater/food phobias) the only one who didn't was my SIL who my DB is divorcing, so i don't have to put up with her shitty, judgemental attitude anymore.. but i was coming close to flipping over it with her.

She was one of those who's opinion was that i pandered to him too much, and every party we went to at hers, she never once even attempted to cater for him because she didnt allow her kids to eat what he eats, i used to have to take a packed lunch with us so he could eat with everyone else.

Original poster

PicaK · 17/02/2015 23:17

Thank you. It's helping to put things in perspective.

OP posts:

senvet · 18/02/2015 01:43

I totally get it.
The endless frustrations of dealing with disability are best helped by people who just say 'please let me know how I can help' and make it clear that they really do not mind being asked.

The ones who rush in with assumptions are much more of a wind-up then they can possibly guess. I suggest that you put up a large poster saying suggestions are banned, unless they come from someone further down the same road you are travelling.

Original poster

PicaK · 18/02/2015 03:37

But they care and they are worried... and utterly bewildered by my reaction - which is unreasonable of me.
I guess unless you experience someone judging your parenting and insinuating you aren't doing the absolute best you can - you have no idea how devastating it is to be on the receiving end of that.
Usually I just smile and wave and quietly seethe - but this was 8.30am before a 4 hour journey home; never my best time.

OP posts:

OddFodd · 18/02/2015 10:24

I seethe silently. Food issues seem to be a huge target for 'helpful' comments. I'm fairly sure that an awful lot of people think DS's food issues are my fault and/or I pander to him.

senvet · 18/02/2015 11:15

Forgive them for they know not what they do!

No, really, they do not get how many zillions of 'helpful' suggestions you have to deal with, and what a tiny percentage are actually useful.

I was lucky in that I had time to work out jokes to warn them off with - but it was my disablilty not dc's.

Things like 'my brain is fine', and 'I think that is already number 164 on the to-do list'

One time someone said ;where is the to do list? And I sent them off in search of a 4 foot long piece of paper on the wall....

If you think they genuinely want to help and really do care then ask if you can tell them the things that would really help, and the things that really don't. Most people do not want to get it wrong.

Good Luck

Jacksterbear · 18/02/2015 18:29

Oh yes I hear you. Agree with OddFodd re food (and sleep) seeming to attract comments in particular. Probably because they are problems faced in some form or other by most parents, so people who have had kids mistakenly think they "get it" when they really, really don't.

I often get, from other mothers, "Oh haha I'm such a Bad Mummy [translation: YOU are a Bad Mummy]: my DC eat whatever I put in front of them because they know I am so mean I won't cave and give them anything else". And so on.

HowCanIMissYouIfYouWontGoAway · 18/02/2015 18:33

oh yes.

"have you tried "

oh my GOD, that never ever ever occurred to me in nearly 16 years. Nor did it occur to the physio, the OT, the paed, the gp, autism outreach...

Thank god you came along when you did.

Hallelujah it's a miracle.

One day I'll actually say it instead of just thinking it

I mean, do these people think you can go years and not try everything? That you can have a whole team of people and not one of them made simple suggestions?

PolterGoose · 18/02/2015 18:56

This reply has been deleted

Message withdrawn at poster's request.

BigBird69 · 18/02/2015 19:10

I am smiling in that knowing way....I sympathise!!!! Families always the worst. Whether it's because they think their being positive and helpful? Sadly has the opposite effect generally. My mother is the worst culprit. DS had a stroke. Permanent damage. She says things like "he'll grow out of it" or "so and so's son couldn't read at nine and now he's at Cambridge". I just see the red mist and want to commit hideous acts of violence so I feel your pain!! X

greener2 · 18/02/2015 19:12

This reply has been deleted

Message withdrawn at poster's request.

LittleFluffyMoo · 18/02/2015 19:49

Yes! Just picked my kids (both with ASD, one diagnosed ADHD and one so far undiagnosed) up from my parents and nearly lost it with my Mum who thinks it's all a question of parenting and is happy to give me advice. Just kept it in because, frankly, she's one of the only people who's willing to take them for a day or two when I need a break, so I try to grin and bear it.

I totally understand you losing it though, it's a thin line sometimes!

hazeyjane · 18/02/2015 19:51

Sympathies

I had someone the other day, tell me that if I gave ds 7 drops of almond oil in water to drink morning and night, he would not only start talking, but he would also be 'cured' of his 'genetic ailment' (her words)

Now that is a whole other kind of crazy!!

ConstantCraving · 18/02/2015 20:46

Hazey I'm chuckling at the Almond oil but I can beat that - my Mum slipped a newspaper cutting into my bag which detailed how eating broccoli can cure autism!! A whole new level of crazy - especially considering getting DD eating anything that's green would be a miracle in itself!

PolterGoose · 18/02/2015 20:50

This reply has been deleted

Message withdrawn at poster's request.

uggerthebugger · 18/02/2015 21:02

The one time that I did snap and use the phrase "Hallelujah it's a miracle!" when someone gave me an inane pro-tip, that someone turned out to be an evangelical Christian with a sarcasm bypass.

I've got a lot better at dealing with the helpful comments. I don't know why, maybe it's just part of the thicker skin you develop after a while.

The thing that still gives me the white-hot rage though is when the helpful comments come from someone who is in a genuine position to help, but won't. Or when they come from someone trying to peddle crap to people who've nearly lost hope.

Original poster

PicaK · 18/02/2015 22:07

Thank you soo much for all your comments. It helps.

OP posts:

TheFirstOfHerName · 18/02/2015 22:20

I have started filtering out the unasked for advice.

I realise this is not supposed to be a support thread for parents of children with eating issues, but I am happy because DS2 (eating problems related to sensory issues with ASD) has (finally) managed to gain some weight and his BMI is now 15, just in time for Monday's appt with the paediatrician. Most recent new food added to his repertoire is jalapenos!

senvet · 18/02/2015 23:28

Broccoli can cure MS as well apparently. Mind you, there was a time when you could 'cure' ASD just by filing an appeal in Coventry. The school, which had been ringing parents daily with cries of horror, suddenly found that all symptoms had vanished and lots of progress had been made....

I think relatives are more desperate for a 'cure'. They find it harder to accept that doing something different-from-the-majority is valid. They adjust to the situation slower maybe. I guess they aren't living with it 24/7.

WhoKnowsWhereTheTimeGoes · 19/02/2015 11:41

I get it too, plus the minimising "well, we're all on the spectrum somewhere aren't we?" which a well meaning friend says fairly regularly in an attempt to empathise, no we're bloody well not is what I always want to say.

I got the rage last week when having slogged my way through the statementing system with one appeal down and one in progress a friend who has applied recently for EHCP and is having some success with mediation emailed me about how easy it all was and she was amazed I hadn't thought of doing it. I'm very pleased for her but I really didn't need to be told that I should have done it differently especially when she has a long track record of ignoring any advice from the rest of us in the circle of friends.

1805 · 19/02/2015 16:50

Yes - these "helpful" suggestions REALLY REALLY REALLY annoy me too.

ARRRRGGGGGGHHHHHHHH

And you can't really get cross at them at the time as they think they are being nice and helpful.

HugAndRoll · 19/02/2015 18:17

Yes, comments, they're great.

My nearly 7 year old with ASD is having (amongst other things) poo issues at the moment. I get "have you tried to explain to him why you shouldn't put your fingers up your bottom?" and "well, just tell him to stop it". Well, blow me sideways, why didn't I think of that?

They also don't understand the whole "wrong bread, wrong pasta, wrong

bitbap18 · 19/02/2015 18:58

Hugs! I think we've probably all experienced it in one way or another, at some point!

Mine is currently MIL refusing to accept that both her son and granddaughter have been diagnosed with Aspergers within a week of each other.

Hubbys assessment team asked for a huge questionnaire to be completed, a lot about when he was very young, which neither of us can answer. Sent her the questions, and she gave the answers she wanted to give e.g. Deny all knowledge! She doesn't understand how it's so unhelpful! Yes, it's hard to accept there is something wrong with your child but it's not you living with him now!

We've had problems because DDs Aspergers is high functioning, so not obvious to the untrained eye sometimes. But it doesn't change it being there. I've not battled for five years to get where we are now, for there to be nothing wrong after all! Xx

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