friends view of my ds

[KateBall]

I'm having a bit of a difficult time understanding a friends view of my ds. I suppose if I was being objective I should understand it but I just find the comments - although well intentioned I think - a bit hurtful. She knows I have a hard time with ds sometimes - especially that he is abusive to me - sometimes physical but mostly verbal. She sees him as manipulative and that the problem may come from or be exacerbated by differing parental control. i.e. I do one thing and my dh does another (usually not a lot!) when faced with my ds ranting or being abusive. She thinks my ds should be able to learn how to control his behaviour and not be so manipulative. I don't see him as manipulative - just anxious and reacting almost subconsciously by being angry.

 

I say she is well intentioned because I think she is only hopeful that I can improve things for my good because in all honesty I'm not that happy at the moment and she sees me being worn down. But all I seem to be able to say to her is that - thats our lot - thats what we have to put up with if you live with a child with asd and she is wrong. I can see that it is more and more leading to me being uncomfortable in her company if she can't understand. I don't want my friends to dislike my son. Or should I be realistic - they are more than likely to dislike him because of his behaviour.

 

Thing is I'm not sure I'm right. I'm beginning to question now whether some of our inadequacies as parents is making the situation worse. Then again I get angry and think no- this is just someone else having their say out of ignorance and if it was a stranger I would probably tell them to mind their own business.

 

As families of asd children are we destined to have no friends at all or only those who also have asd children as they and only they seem to be able to understand.

 

Should I perhaps just not talk about my ds with her anymore. Maybe thats the answer. But then isn't a friend someone you can talk to about anything?

 

Do you find your friends have difficulty understanding and liking your children? Does it affect your friendship? What do you do about it?

[forbsay]

Hello

 

Firstly sending you lots of hugs <'> <'> <'>

 

In my personal experience of my friends - some of them have turned their backs on me and my son. Only coming out of the woodwork for birthdays and xmas. I don't really talk to them about M.

 

However, I have a couple of very good friends who will always be there for me. And i can talk to them about M.

 

 

 

 

[dooday24]

me too some freinds have just disapeared . but also hav a couple of very good freinds who offer me with support with anything...

 

it is veery difficult other people understanding a child with a asd alot of people i thought were freinds just say u shud give him a good slap boohooo

 

sendinding u a big hug

 

love donnaxxxxxxx

[baddad]

She thinks my ds should be able to learn how to control his behaviour and not be so manipulative. I don't see him as manipulative - just anxious and reacting almost subconsciously by being angry.

 

 

Hi kate -

 

Maybe you're both right. While anxiety may have a part to play in prompting the behaviour that doesn't rule out him being manipulative... In fact, it predicts that he will be manipulative, because being manipulative places him in control and being in control is reassuring.

Anyone who has anger management issues is probably responding in the first instance on a subconscious level. One of the key principles of therapy for anger management is to recognise the signals and channel them into an acceptable behaviours rather than ones which are unacceptable. Sadly, it's also a fact that when you try to do that you're going to start off by seeing an increase in the inappropriate behaviour because that's the behaviour that has always 'worked' in the past.

 

To the other part of your question having a child with an ASD (or any other disability) is almost always isolating to a greater or lesser degree. If you're really lucky, you'll have some friends/family who go the whole journey with you but many will jump ship at the first opportunity and some will just drift away 'cos you/they find yourselves in different boats.

 

Whatever happens between you and your friend, I hope the next week or so (at the very least) all goes smoothly for you. I love Christmas, but it doesn't come without it's additional stresses

 

[JsMum]

 

 

What matters is the quality of your friendships not the quantity, From reading books on friendships to help J keep them it has been a great discovery of friendship issues, Ive learnt friendships are incredibly important but they are incredibly difficult too, as is been a freind.

 

I think friendships should be on the curriculum or part of the life skills in education/placements as a lot of people have a lot of difficulties with freindships young and old.

 

JsMum

 

[KateBall]

Thanks - I really appreciated your replies and found them very useful. I've had a really long think and I'm just going to see how it goes. I originally thought I should stand up to my friend but I don't want that to cause a rift and end the friendship so I think instead I will just try and avoid talking about issues regarding my ds (probably make it out of bounds) - even though of course its a big part of my life. I think perhaps different friends must be for different things. This one is just not for understanding about my ds (although she may actually have been right about his manipulating it doesn't help that she doesn't like him) - but she is very helpful/useful about other stuff and we can still have fun there - and heaven knows I often need a bit of fun and entertainment from someone outside the home!

Hope everyone had a happy Christmas. Lets make 2009 a good year for us all and our children.

[bluefish]

Hi Kate,

I do not have any friends that understand. However I have come to understand the very hurtful comments that have been made in the past and the total lack of understanding that has been shown that has made sad and mad (i.e. he will love the party, just take him)

is down to lack of undertanding of asd and sadly as parents we have had to become experts, but our friends haven't they see a simple solution to many of our problems. I do not discuss ds in detail with friends anymore and also except when they boast about the triumphs of their kids it is not ment to hurt me it is just what parents do ... hard but true

Walk in our shoes for a day and the opinion would be diferent....It is not going to happen, so I have no advice as I fantasize about telling a friend of mine how life is for me....... but its not worth it we are living this not them and ~I often think that I never gave a thought to parents with children with difficulties/ dissabilities until it affected me!.

 

[KateBall]

when they boast about the triumphs of their kids it is not ment to hurt me it is just what parents do ... hard but true

 

Oh yes this is what I have trouble with too. When my friends or family go on about their children and milestones. It really hurts. The only thing I can do is think about the real achievements we have - the real highs that other parents don't have.

[Tally]

I think there is a big difference between a person who feels anxious if they are not incontrol of their environment (including the people in it) and a person who gets pleasure from exerting control over other people for its own sake. The two can look very similar, and I think that maybe your friend doesn't understand how situations may make your son anxious. Of course, that doesn't make it OK for him to be physically or verbally aggressive toward you, but I imagine you are already trying to find ways to deal with these behaviours anyway.

 

I think that your approach about seeing this as a friendship for a certain purpose is probably a good one.

 

My parents were joking about "newsletters" that people send out about their families at Christmas and how they boast about their children's achievements. They had read a spoof one in the newspaper. I showed them one I get from a woman who has four children, two with disabilities. I remember last year she was really proud that her nine-year old had learned to ride a specially adapted tricycle and included a picture of him on it. This year she told me that her disabled children enjoy playing wheelchair football, and said it's a bit like bumper cars with a giant ball thrown in! I don't know whether her other friends enjoy reading this type of news as much as I do, but her pride in her children really shines through and my parents really enjoyed reading about these milestones.

[KateBall]

I think there is a big difference between a person who feels anxious if they are not incontrol of their environment (including the people in it) and a person who gets pleasure from exerting control over other people for its own sake. The two can look very similar, and I think that maybe your friend doesn't understand how situations may make your son anxious. Of course, that doesn't make it OK for him to be physically or verbally aggressive toward you, but I imagine you are already trying to find ways to deal with these behaviours anyway.

 

I think that your approach about seeing this as a friendship for a certain purpose is probably a good one.

 

My parents were joking about "newsletters" that people send out about their families at Christmas and how they boast about their children's achievements. They had read a spoof one in the newspaper. I showed them one I get from a woman who has four children, two with disabilities. I remember last year she was really proud that her nine-year old had learned to ride a specially adapted tricycle and included a picture of him on it. This year she told me that her disabled children enjoy playing wheelchair football, and said it's a bit like bumper cars with a giant ball thrown in! I don't know whether her other friends enjoy reading this type of news as much as I do, but her pride in her children really shines through and my parents really enjoyed reading about these milestones.

 

Tally that about the newsletter is lovely.

 

And what you say about there being a big difference in in someone getting pleasure out of control compared to someone who feels anxious and has to control is so true. Thats it - thats what my ds is doing - I know he's not malicious but perhaps he comes across as that. That will help me explain it better to my friend. Thanks Tally

[pookie170]

Hey Kate!

I think every parent of a child who has a special need that affects their behaviour experiences this- and it can be utterly agonising to go through. It's the same old story of 'until you've walked a mile in another man's shoes', iykwim.....

My bestest bud, whom I love dearly and whose friendship I cherish, can still drop what I consider 'clangers', advice- wise. And it still hurts me, although I know she truly doesn't intend for her words to have this affect. Its just that she doesn't get so many things, although she most definitely gets others.....

Am I making any sense?

The point of the above ramble is that,as a consequence, I am now more choosy regarding what I discuss with her (and others!) because I'm tired of explaining myself or my son. I've got enough to deal with without having to rationalise about someone else's lack of understanding and sometimes hurtful comments. And sometimes, I feel cross about that but it's just easier this way. I can still have girly chats (well....girly under MY definition!) but I avoid the hassle.

Which is why I love coming here for viewpoints, cos I can sidestep all that tiresome caca and speak to people who may well have different opinions to mine, but who do at least get it!

 

(Get it?)

 

So I think that you may have to alter some boundaries in order to maximise the benefits this relationship gives you- it doesn't necessarily make it less meaningful though....

Consider this- I really get on with my OH's Mum, and can chat with her till the cows come home...but there's no way I'll discuss certain subjects with her because....well .....you just dont!! I feel like this is the same kind of thing.....and if you can access something like this site or a suitable local support group, then the void may be filled!

However, if this is a true friendship then it ought to be able to withstand you telling your friend that some of her comments have hurt your feelings, and why....I certainly wouldn't be happy if I could detect an active dislike of my son in the air, and it feels to me like that's how you perceive your friend's attitude towards your son to be. Not advocating a blazing row, or ultimatums, but that's just my opinion.

Either way, I agree- parents of kids on the spectrum may have a lot on their plate, but I also think that the payoff is the wonder we share with them when things go well.....

Hope you had a good Christmas,

 

Esther x

[KateBall]

Hey Kate!

I think every parent of a child who has a special need that affects their behaviour experiences this- and it can be utterly agonising to go through. It's the same old story of 'until you've walked a mile in another man's shoes', iykwim.....

My bestest bud, whom I love dearly and whose friendship I cherish, can still drop what I consider 'clangers', advice- wise. And it still hurts me, although I know she truly doesn't intend for her words to have this affect. Its just that she doesn't get so many things, although she most definitely gets others.....

Am I making any sense?

The point of the above ramble is that,as a consequence, I am now more choosy regarding what I discuss with her (and others!) because I'm tired of explaining myself or my son. I've got enough to deal with without having to rationalise about someone else's lack of understanding and sometimes hurtful comments. And sometimes, I feel cross about that but it's just easier this way. I can still have girly chats (well....girly under MY definition!) but I avoid the hassle.

Which is why I love coming here for viewpoints, cos I can sidestep all that tiresome caca and speak to people who may well have different opinions to mine, but who do at least get it!

 

(Get it?)

 

So I think that you may have to alter some boundaries in order to maximise the benefits this relationship gives you- it doesn't necessarily make it less meaningful though....

Consider this- I really get on with my OH's Mum, and can chat with her till the cows come home...but there's no way I'll discuss certain subjects with her because....well .....you just dont!! I feel like this is the same kind of thing.....and if you can access something like this site or a suitable local support group, then the void may be filled!

However, if this is a true friendship then it ought to be able to withstand you telling your friend that some of her comments have hurt your feelings, and why....I certainly wouldn't be happy if I could detect an active dislike of my son in the air, and it feels to me like that's how you perceive your friend's attitude towards your son to be. Not advocating a blazing row, or ultimatums, but that's just my opinion.

Either way, I agree- parents of kids on the spectrum may have a lot on their plate, but I also think that the payoff is the wonder we share with them when things go well.....

Hope you had a good Christmas,

 

Esther x

 

Hi Esther - just read your post - have been away for a few days or so. All you say is very wise - I have come to this conclusion too. Thanks for taking the time - it has really helped me put things in perspective. I have spoken to my friend following Christmas and she has much to offer in terms of friendship - but no she doesn't "get it" or at least I don't think she does and so discussions around my ds will have to be off limits. I know she won't mind me telling her which I will do as and when the opportunity arises again (without making a big deal of it).

[hedders]

What do you do when this is your Hubby ??

 

Mine is in complete denial, he gets angry if i mention Special Needs, ASD etc.. he doesn"t want to know about it and refuses to listen. I feel he partly doesn"t beleive in things like this.

I usually hear words like spoilt, lazy, bossy rather than look into why dd"s are like this.

Maybe he is frightened that if it is Gentetic he also has a part to play in all this.

 

Even though both dds are on the SEN registier in school he believes its just because they can't be bothered to try in school.

I dont like it when he says to older dd her friends can read and write better than her, at mo her reading age is 3 years delayed.

He gets angry that she talks too fast and all her words are slurred - when infact his family including himself all speak this way, and they all have stammer"s.

 

I suppose with friends you always have the option to walk away

Anyone hubby like mine and how do you cope

[KateBall]

What do you do when this is your Hubby ??

 

Mine is in complete denial, he gets angry if i mention Special Needs, ASD etc.. he doesn"t want to know about it and refuses to listen. I feel he partly doesn"t beleive in things like this.

I usually hear words like spoilt, lazy, bossy rather than look into why dd"s are like this.

Maybe he is frightened that if it is Gentetic he also has a part to play in all this.

 

Even though both dds are on the SEN registier in school he believes its just because they can't be bothered to try in school.

I dont like it when he says to older dd her friends can read and write better than her, at mo her reading age is 3 years delayed.

He gets angry that she talks too fast and all her words are slurred - when infact his family including himself all speak this way, and they all have stammer"s.

 

I suppose with friends you always have the option to walk away

Anyone hubby like mine and how do you cope

 

My dh is a bit like this too. Not so much all the time but is inconsistent - one minute he seems to get it but the next he is telling ds off for something that relates to his ASD or blaming the school about his behaviour. I just remind him its all part and parcel of his ASD. At least he doesn't deny it exists but he doesn't really understand it the way I think I have had to learn. The problem is that dh doesn't do as much reading up about it nor does he look at this forum. I wish he would understand more. I don't know what the answer is Hedders. It must be awful to have to stand up for your child to the one person you would hope would give you both support. Maybe you could give him books to read - or what about films about ASd. Actually that has helped a bit with me - I've got him to watch a film or TV prog about someone with ASD and he has recognised the same traits in our ds - he can't argue then. Denial is a terribly negative thing. Once you accept something you can get on and deal with it.