Other peoples opinion

[Andie]

Hi first posting, but I'd like to know if anyone else has issues with regards to their own parents giving you the parent lectures over you not disiplining your AS child appropriately.

 

This is now becoming beyond a joke, I have tried to inform them that their grand daughter has problems when she does something wrong or she accidentally breaks something she panics and is unable to see beyond this and becomes verbally agressive. this ends up with being all my fault and as a parent with an AS child if they are on an emotionally roller coster then that is the time when she is not the most approachable child.

 

It does not help that they do not want to understand what I am going through and that the endless trips to the paed, psych, speach and language meetings and all the other bits and peices one has to do is making me feel incredibly low and my self esteem is feeling very battered.

 

I get support from friends and the school (have found that this is not the case is some schools) but the people you want the support from most have been very few and far between.

 

Any advice on how to support my daughter and get my parents to understand would be appreciated.

[phasmid]

Hi Andie and welcome to the forum. It isn't easy for us, as parents, to accept there is/maybe something 'wrong' with our children (not the best term but I'm sure you know what I am getting at). It can be even harder for grandparents who don't see what we see, or as often. I would suggest you could give them some information to read through at their leisure. If you click here you will find advice sheets for relatives that you can print off from the NAS. They maybe finding it difficult to come to terms with what you're telling them and information from a 3rd party source might help.

 

You will find plenty of support on here so I hope this is the first posting of many.

[mum22boys]

Hi and welcome,

 

I haven't exactly got the same problem as you but can relate to some of it. We realised last year our son was different in his ways from other kids (hubby had been telling me since m was 2 that he seemed to be autistic but i refused to accept my child could be). It seemed to explain the outbursts and inappropriate responses he gave, such as like you have said he will shout abuse if he does something wrong because he can't deal with it.

 

Last year just as we were going about the long diagnosis route we went on holiday with my parents. My mum accepted straight away our concerns with M and agreed with CAMHs telling us that he appeared to on the spectrum, my dad however had difficulty accepting this. He took everything M said and did as a personal attack on him. My Dad could not see M thought differently and needed to be asked before anyone did anything because it doesn't matter if m has the same thing to eat every day he still expected to be asked what he wanted. We can not deviate from this and if we do a tantrum will occur. My Dad went to get m ice cream and didn't ask M. he then proceeded to pile it high with sprinklies and M went mad. He knocked over the stack of bowls in the restaurant and screamed. my Dad felt it was personal and it took a long time for my Dad to come out of his sulk After two weeks of being with m almost 24/7 he realised m was like it with everyone and it wasn't personal. Things are much better now and they are very supportive.

 

Sometimes it can be very hard for those who are close to us to 'see' what we see with our kids. They are not with them like we are and sometimes it is easier to close your eyes to the problems than address them. i have friends who although they appear to be supportive they still can't see the problems we encounter. I suggest you try to get them to read a book on ASD. Do they spend much time with your child? Sometimes it takes people actual experiences to realise the problem is there.

 

Sorry if i've rambled on. I hope things improve and i'm sure someone will come along and give you much better advice.

 

mum22boys <'>

[curra]

Hi Andie,

 

Welcome to the forum!

I'm sorry that you are feeling low due to the lack of support from your parents. My relatives also have no understanding of ASD and they think it's all due to my poor parenting. As I am a lone parent, they imagine that I can't discipline my son. They have no idea of the stress I have trying all the time to reach a balance between being strict and supportive with him. It's very hard for other people to see that a child with AS is not able to do something and is dsitressed, and not just manipulative like just like NT children. My sister once even said to me that there's nothing wrong with my son and that it's just "convenient" for me to label him! I was really hurt by that and I sent her website links and information. She accepted it in the end, but she still doesn't understand what I go through. It's a very good thing that you feel supported by the school, most parents have to battle against the school saying that their child's difficulties are due to lack of discipline.

Maybe your daughter could stay with your parents some times? It might help them see what you go through.

Good luck! <'>

 

Curra

[Zemanski]

Hi Andie

 

This is a subject that appears on threads here quite often, sadly. Family members who see our kids only rarely only see the ways we have learnt to deal with them, not the causes, and their judgements can be very hurtful. Don't worry, you know that what you are doing is best for your daughter and hopefully in the long run your parents will see that too.

 

One thing that seems to have worked a few times with other members is to take granny (grannies seem to be more sympathetic than granddads) along to one of "the endless trips to the paed, psych, speach and language meetings". Hearing what the professionals have to say seems to help confirm that it's not a figment of your imagination or due to your bad parenting.

Then granny can have a go at granddad till he sees the light too

 

good luck

 

nemo (Z's partner)

[Bagpuss]

Hi Andie

 

Welcome

 

We've had similar experiences within our family. Agree with what has already been said, that is seems to be a common problem. Just want to add that their opinions and perceptions can change though. My mum didn't even know our dd was dx with ASD for at least 2 weeks. She knew we were going to appt to discuss it, but never rang to find out results. So (probably rather childishly on my part) I didn't raise the subject. and didn't raise it with my sister either. My philosphy was that if they were interested they would ring and ask. It was only a fortnight later, when some inadvertant comment by someone triggered my mums memory and she felt appalled and very upset. She truly was sorry, butstill showed very little support after that. Spent very little time with us, popping in for a quick cuppa etc. She kept saying she wanted to babysit so dh and I could go out and spend time together, but all I wanted was someone to talk to, someone to spend time with to chat about my emotions and feelings and was in no way interested in going out. I'm not sure what made her change, but she most definately has. She has made a huge effort over the last 6 months or so to spend time with us, and with the kids. She will take the kids out sepearately aswell. She has been to the library and read books on ASD, and has even attended an EArly Bird Plus session on our behalf when we were on hols. The bond between her and our dd is wonderful to see. We've been completely blown away by her

[lil_me]

We had an issue with my Mam for a while, she was saying was nothing wrong etc and I ended up ignoring it.

 

Few months ago on a visit to their house she said 'Mikey talks like a cartoon character' 'Why does he speak with that accent' 'Why does he copy what is said on films/cartoons'

 

My reply - 'I don't know you said there was nothing wrong with him he was just naughty'

[Paula]

Welcome to the forum

 

 

My As son is now 12 and i gave up years ago trying to get my parents to understand autism ect...............It were a waste of time.

 

Ive been through the "Youre hopelss its you making him this way" "Theres nothing wrong with him its you indulgeing him" " All he needs is a smack" It made me feel like screaming.The aguments ive had over the years.

 

In the end i thought stuff yer I aint gonna waste anymore of me time trying to explaine he this or that and this is why he does these things.I also told me mum to keep her ###### nose outta it and seem as i was the one who had to deal with him i would be the one who decided how to deal with it.That shut her up.

 

I did try to give her books,pamphlets ect but she couldnt be bothered reading any of it.Its the same with me sister and her hubby they dont realy wanna know the ins and outs of autism ect or how much stress it puts yer under.

 

Ive also had realy realy low points and suffered from seveare depressive illness on and of over the years due to the constant batlles we have.

 

Youll find loads of understanding support here no matter what you post you can guarnatee someone will be going through or have gone through it.

 

Take care.

[jb1964]

Hi Andie

 

I can only really echo what others have said - unfortunately you will always get family members who believe the child is badly behaved and that more discipline is what is needed or that if they were their child they wouldn't 'get away' with that kind of behaviour.

 

The only thing I would ask is how old is your daughter - it's just that as my daughter has got older (she's now nearly 13) - her differences have become more apparent - I'm not talking about 'upsets' or screaming etc I'm talking about her understanding and socialising etc - now when someone attempts to have a conversation with her I'm sure that family/friends can see there is something different with her as opposed to when she was younger and she would just appear rude/shy/withdrawn/unco-operative etc. We haven't told family other than my parents - but there are bigger differences now between her and her peers than when she was younger.

 

Take care,

Jb

[minerva]

Hi Andie,

 

It can be a whole lot harder to discipline & educate our parents and other adults around us than it is our ASD children lol

Edited June 26, 2006 by minerva

[Jill]

The trouble is that no-one can understand what it is like unless they live with it.

 

I'm really lucky in that my family do at least TRY to understand.

 

It's interesting to me tho, reading this thread, how many people have come to a better understanding by spending more time with the child / family, or how people start to see it more & believe it more as the child grows older and the difference to peers is more obvious.

 

It's so sad, but I guess part of the problem is that people really only believe what they can see (or ar willing to see) and there are not always obvious "signs" with autism.

 

Personally, I find the people who think they are experts more annoying than those that are dismissive. You know, people who give you advice but actually know bog all about it, or say "oh autistic eh? He'll be really intelligent / have a special skill / be lost in his own world then" and then sit back smugly as if you're going to fawn all over them for their brilliant knowledge / understanding.

 

Sorry, seem to have drifted off into my own rant there lol.

 

At least we understand on here mate.

[lynyona]

Hi

 

My mum is fairly understanding to some extent so are the rest of my family , I find the ones who i have the most problems with are my two eldest DS.They are of the opinion that i ahve been to soft on him and let him get away with stuff instead of giving him a good slapping.Yeah right that would really work not that i would anyway but it would cause more problems

[Daisydot]

My parents in law, who are in their seventies, are not at all supportive. When we were doing the tours of the paeds, got the diagnosis etc we confided in them. A couple of weeks later - they had obviously talked about it with each other - they came out with "we dont agree with this Autism business". Like its an option !

 

I let my mum read all the reports and keep her in the picture. She's been more supportive.

 

I only joined the forum a week or so ago, and I've had lots of support and ideas already from others, so keep reading the forum and we hope we can cheer you up a bit and give you some support.

 

Best of luck

Daisydot

[lisann]

Hi and a warm welcome we had a problem with my hubby's parents and we just ended up ignoring the comments easier said then done.If we tried to deal with a situation with Char while we where at their house and they put there too bit in then my hubby would say let us deal with this mum.It is only now she has watched us dealing with him the right way and seen how quickly the situation can be stoped as she started asking question relating to ASD.Befor he was just a solit kid and we needed to give him a smack bum ye right!!!!

 

Lisa x

[jlp]

Hi another one here with non understanding relatives.

 

In our case the ones who didn't want to know were the inlaws. They'd always been very critical of ds, thought he was spoilt etc so when he was diagnosed we told them, gave leaflets etc and expected that they'd now understand. They didn't and after so many comments about 'his supposed aspergers' and the killer comment when dp mentioned that we'd been awarded DLA was that it was disgraceful and that there were properly disabled children out there. So rather than beat our heads against a brick wall we stopped visiting and apart from one phone call to see why, we've never heard anything since. It's a relief in a way - some people don't want to know and never will no matter what books, leaflets or explainations we gave he'd aways be a spolit brat.

 

My dad was funny in a different way, he'd always been particularly close to G. When G was a baby he'd spend ages carrying him around the house so G could see the light switches and fans (we weren't aware of Aspergers then so no alarm bells there!) and hours and hours in the garden so G could arrange the plastic windmills. When we first decided to voice concerns dad dismissed this 'so called experts' etc and has only recently started to take things in. I have drip fed him books and information and also showed him reports about G, several of which are quite negative. The difference is I think is that he didn't want to accept his grandson as being autistic and a bit of denial went on, rather than he just didn't want to know full stop.

 

 

I think you maybe have to decide whether they are in denial or simply that they just don't want to know or help full stop. If the first I'd suggest drip feeding leaflets, books anything written about your dd such as hospital reports and maybe it will sink in and they will see what you are deaing with. If not maybe you will have to decide on whether to give up educating them, although I appreciate this isn't an easy decision.

 

Good luck and welcome to the forum