Why do friends just not get it??

[mum22boys]

I met a friend the other day (best friend actually) and mentioned M had been to see the pead. I then told her the problems we are having with M going to sleep (this can take up to 4 hours for him to finally fall asleep). She knows all the problems we are having with M and she says 'well he obviously isn't getting enough exercise'. I can't believe she said something so stupid. I said to her ,M spends 6 and a half hours at school every day, most children are worn out by that alone. She then says 'well perhaps he doesn't run around enough at lunch' Believe me he does, it's the only form of play he understands - chasing the others! So then she says ' well perhaps you need to enrol him in some after school clubs'

By now I am getting very annoyed. She knows I can't even get M to a party without him screaming once there and laying on the floor screaming because of the noise. There is no way i could get him to go beavers etc. She knows it took me 2 years to persuade him to go swimming and when the new term came along with the new intake of children he was thrown by the change and lashed out hitting the swimming teacher. That has put him off swimming lessons.

 

I feel annoyed she is questioning me and M and is so unsupportive. From now on i just won't bother saying anything. I think half the time she thinks i am exagerating things. Hubby said get her to have him for a month and she will change her mind!

 

Glad i've got that off my chest!!!!

 

mum22boys

[rainbow queen]

<'> <'> <'> FEEL FOR YOU

 

 

i get this all the time

 

even from close folk who i have aready explained things to

 

this makes us feel even more alone in our situation

 

i spend half my time battling with my son,the other half battling with the health professionals

then any spare time in between explaining about how he is to people who are quite simply ignorant

 

i cant belive how many close minded folk there is in this world -iam only 30 but even from i young age i learned never to judge a book by its cover

 

i sometimes wonder if god picked me to have such a challenging child with probs because i am a compassinate understanding person who will fight for the underdog ect..............................

 

because belive me if those narrow minded people did have our children for just one week-they would not have half the understanding and compassion as we folk on here would

 

just keep that in mind when dealing with these people

[curra]

Hi Mum22boys,

 

I can understand very well how you feel! The only reason I can think of is that friends try to help you with ideas from their own experience and since they don't have the experience of living with an AS child, they just simply don't have anything better to say. People normally know very little about AS. I have stopped telling friends and relatives about things my son does. Their answers were usually so annoying, meaning well, that I see it now as pointless. I have tried to make other people understand what AS is but in my case it was only Now I talk about it only with parents who have AS children, like in an AS support group or in this forum where you can find lots of nice people who are going through a similar situation.

 

curra

[annie]

I used to get frustrated because people used to say things like 'you should try this...... or you should try that'. As if we hadn't tried everything we could think of .

 

My sister-in-law was the best one, she's never had children, always full of 'advice'. One day she offered to baby-sit.............less than an hour later we had a call, could we come home, she couldn't cope ........'nuff said

[Elanor]

This is why I love this forum - the people on here really do understand.

 

Some of my friends have some understanding of my son's problems, but its hard for them to realise how fundamental the problem is - this is why I usually refer to autism, rather than Aspergers now, because it makes people take it more seriously.

 

I think most people will try to say things like your friend did - when I'm charitable I think they're trying to offer comfort, because they don't want you to be having trouble. Really its about ignorance - ASDs are complex and little understood, and even when friends make a sincere effort to understand, very few are ever going to put in all the reading and time with your child that they need to do, if they're ever going to really 'get' it.

 

Elanor

[adamsmum]

My sister asked why Adam was in nappys and why no one would babysit. when i tryed to explain she said well do you disiplin him. Why do you let him do it. He has to learn one day. I tend to not speak to her much. Not shore whot she thout realy.I'd love to see her cope. Maybe i should let her babyset she thinks shes an expert

[madme]

Sounds familiar. My sons aunt ( my sister in law) who also has no children made some quite pointed remarks the other day when we were visiting. My son has severe adhd as well as aspergers and a bit moreas well! He is on ritalin. She has always objected to this quite vocally and within his earshot! She reported that he close friend who is a teacher had a kid like ours in her class whose "mum had managed to get a dx of adhd as she was alawys on at the teacher and so he was prescribed ritalin. Apparently hr friend then became his teracher and revoked the dx- singlehandledly mind you. All he needed apparently was a firm hand! Funnily enough when my son went there for a week a few yaers ago she was desperate for him to take his tablets - bizarrely shes no longer as keen to have him!

[nikrix]

I know just where you are coming from. I have fallen out with people over the same thing, they think P is a naughty child and I have no control over her.

[LizK]

People invariably give advice from their own experience, am sure they mean well most of the time but their experience rarely involves the reality of ASD. The biggest difficulty I find is getting people to understand that we can't really change DS, it's often a matter of changing his environment around him and suggestions of 'try this with him' really aren't appropriate or practical. I remember the wife of one of H's work colleagues very sniffily suggesting I send DS to nursery (which he does anyway) and suggesting I wasn't giving him opportuities to play with other children when we went to a friends house and DS spent half the time sitting in the hall as he was scared

 

Lx

[Suze]

I think it,s a sad fact that unless you live with it you cannot really understand or comprehend.That goes for any illness or disability.There will always be those that feel they have the answer and could do a better job than the parent/carer.I,ve had similar problems and I chose not to see some friends anymore,their opinions about my son upset me too much

[phasmid]

Suze is quite right. You have to live with it to appreciate the differences ASDs can cause. Sometimes these ARE obvious to a casual observer other times (most of them) they're not. Some people only come out with crass remarks because the genuinely feel they may be 'the one' who provides you with 'the' answer. However there will always be those who refuse to acknowledge the very real problems our children and ourselves face. I'm afraid we will have to learn to either live with it or pick our friends carefully.

[ceecee]

I think these posts just highlight to me the utter ignorance people have about A.S. and autism.

 

I think I would just say to myself.They are the one's with the problem.They are ignorant and un educated.Easier said than done i know.

 

I have had professional people say X can't have aspergers.He/she would be unable to work and would be in a home. Please!!!!

 

Or you would know if someone had aspergers.it would be obvious.Yeah right thats why there are all these people walking around wondering what is wrong with them or knowing what they might have but unable to get a diagnosis.It obviously cant be too obvious!!!

 

That's why this forum provides invaluable support.it is full of people who do know what they are talking about from their own experiences.

 

i am a firm believer if you don't know put your hand up and say so and ask to learn and listen.

[pumpkinpie]

I know exactly what you mean. The best person I had to talk to was my mum who like me just loved my child for who they were. She was brilliant and is missed every day. Like you say having a specila child does make you more aware at one time I was probally one of those people who stare in the supermarket now, I dont mind queeing if someone is having a problem AS i JUST TAKE THEM as having similar problems as us.

The good thing is my other kids are very tolerant when it comes to educating the outside world.

[smiley]

I know just how your feeling mum22boys <'>

 

I come up against this one far too often. People see my little one and assume all is well. They don't see the hours/days of preparing him to see them and the meltdown when we get home because it's all been too much for him. <'>

[elaine1]

Luckily (or not for her!), my friend has a child with dyspraxia so he has some of T's problems, its relatives i have trouble with, specially grannies. They say stupid things like well noone had that when we were young!

ppl with autism were locked up in institutions in their day for gawds sake!.

 

 

Another good one is look at me and give me a kiss!

Im lucky if ive had 6 kisses in the whole of his 12 years!

You have to laugh dont you?

[ceecee]

either that or cry and its better to laugh

[mum22boys]

Thanks all for your responses. It was good to know all of you know what it is like, even though it does get frustrating.

I know the easiest thing to do is ignore the remarks, but some times you just can't. It makes me feel incompetant as a mum. I'm sure you all know what i mean.

The one thing i will never think is perhaps i should have taken him to more groups to get him to mix, some have actually suggested i didn't do that enough!!!! I spent every week taking him to toddler groups, swimming and action groups but he just sat there by my side. i will never beat myself up about that one!

 

Thanks again all.

 

mum22boys

[Bullet]

I felt terrible with my older lad for ages. I would sit and listen to him repeating back whole songs and passages out of stories and things he'd heard from the telly (including intonation) and wonder why he could do all that but not be able to say he wanted something, or what he was doing, or what someone else was doing. I would watch as he would spend ages patiently building and rebuilding a tower of blocks up to ten high, or work out how to do an alphabet peg puzzle in under two minutes and yet would be unable to understand a simple instruction like "put the duck in the bath" or "get your shoes". I couldn't put my finger on what was worrying me so I'd explain it so badly and of course people wouldn't understand and suggest that it was because I was a new mum, or that he was just behind and would catch up. It got to the point that when the health visitors started asking questions and one of them said she would see how my lad played that I believed they were just pandering to a neurotic mother and asked them out right. I was taken aback when they said they weren't, that they had concerns themselves, they had spoken to my GP and they wanted me to make an appointment. Next stage the GP had got my two year old referred and he has an assessment with a specialist paediatrician in just over a week.

Of course, he could just be off on a temporary tangent and six months down the line might be talking away perfectly normally. But the relief that some others thought his behaviour and talking needed checking out and I wasn't just some ignorant mum was overwhelming.

[ceecee]

Bullet

 

I have been accused of being a neurotic mother(in the first four years of her life my daughter went to the doctors four times!!!)so i was hardly neurotic, being told she was always going to be autistic because she had speech therapy!(what so everone who has speech therapy is suddenly autistic at four years old within a week of having an mmr vaccination)I was told there is nothing wrong with her because she looked at me!

 

More recently once i realised i Had in all lileklihood A.S. I have been accused of making things up for attention, making illness up for sympathy, bullying and lying, having problems that i need councelling for and i am sure there is more I've forgotten!!

 

Now it 's like water off a ducks back.i won't be pushed around any more or accused of things.I just think well we are all entitled to our opinions in life and i don't think i would say my daughter was autistic and i had a.s. if it wasn't true.Nobody wants to have these things

[sue45]

Know exactly what you all mean - my daughters dad and his wife have been convinced my parenting has been the problem. One of his comments was that although his wife is 10 years younger than me she obviously knows more about parenting than me because H is so badly behaved and his other children and her daugher aren't. His wife has said things like "have you tried this and have you tried that - you're not firm enough blah blah blah, This from the people who went from having H once a week to once every six weeks over the l;ast 2-3 years because they couldn't cope. I said to his wife if she thinks she can sort it all out why don't they have H for a month and see how it goes - surprise surprise, she declined the offer. I understand they have their other children to consider - but H is still his daughter too and he gave up on her. Neither of them believed she had AS and kept saying things like, well have you got a diagnosis yet? with that tone in their voice like they know everything and I'm just a fool.

 

Well, I have a diagnosis now but my daughter wants nothing more to do with them and I don't blame her. It's so sad though.

[UltraMum]

Bullet

 

I have been accused of being a neurotic mother

 

 

I can still remember the doctor who said scathingly "Is this your only child?" when he still hadn't slept through the night by age 3 ? .... wish I could meet him today ...

[ceecee]

I can still remember the doctor who said scathingly "Is this your only child?" when he still hadn't slept through the night by age 3 ? .... wish I could meet him today ...

The doctor who told me i was neurotic looks very embarrassed when he sees me in the supermarket and avoids my gaze.I usually glare at him.I've even got my daughter before now to say rather loudly is that the doctor who said there was nothing wrong with me and I ended up in gt ormond street mum

 

Surprise surprise he is no longer our doctor.

 

The health visitor who said there was nothing wrong with my daughter and she would in her own time refer herto a paediatrician(we phoned the paediatrician direct in the end had an appointment within days) when a couple of years after the event I would take my son to the clinic to be weighed would rapidly disappear into another room with a rather embarrassed look on her face.Mind you it didn't help that if i needed to see a health visitor i would say I'll see anyone but X'

[Guest hallyscomet]

Hi Mum22boys

 

]

Hubby said get her to have him for a month and she will change her mind!

 

I know how you feel, I have a very ignorant controlling sister whom I haven't spoken to for at least five years who I know says behind my back Give your son to me for a month and I will change your boy.

 

Only I know and my sons doctor what lengths I have gone to help change my boys world for the better to only realise that I have to accept what is. I often feel reduced to tears as none of my family take it in, their just not interested, don't care they are all so self absorbed.

 

Here are a few of these for you <'> <'> <'> and all you reading this as we all have been here and this is the only place some of us feel people actually listen and support us.

 

Regards

Hailey

Edited January 10, 2006 by hallyscomet

[Bullet]

Oh I've just heard a classic! DH's boss has said her cousin was just the same as Ds1 and he's fine now and it was because he watched far too much tv. Ds1 watches half an hour a day. As well as repeating whole sections from programmes, he repeats things back from what he's heard me say, what stories he's heard, what other people have said. He also has all the other things about him I've mentioned. I speak to Ds1 every day on a regualr basis. I point things out. I ask him questions and wait for an answer. I do action rhymes and try turn taking games with him. Nothing has worked so far.

He is due to be assessed on Monday and I wrote a list of things about it. I am so tempted to ask DH to show it to his boss and see what she says.

[forbsay]

Yip, can totally relate to the comments in this thread. I got really good xmas cards from the Scottish Autistic Society which had the problems that autistic people have listed on the back of them - hopefully it will open peoples' eyes a bit. Gave one to my manager at work so she knows about the issues that i am faced with on a daily basis.

 

Gosh I am so much stronger than I was!

 

 

 

Forbsay

xx