Does having a child with ASD change you as a family?

[smiley]

Well, obviously, of course it does!!

 

I'll (try ) to explain what i mean...

 

I was chatting to a friend the other day. She was telling me about a family she met whilst visiting her hubbys relatives for a birthday bash.. Average family, mum, dad and two boys, now in their teens. The eldest boy has AS.

 

My friend was saying how the boy with AS was more keen to chat and he was happy to mingle with everyone. Whereas the mum, dad, and other boy didn't seem to want to mix, we're quite rude and eventually the younger boy and dad disapeared for a walk. My initial thought was that maybe the other family members shared traits or possibly un-dx themselves, but apparently not.

 

My friend went on to say that the mum has said she felt ground down by caring for her AS child and she feels this has had a huge impact on the rest of the family. They've always done everything to help their AS child and she feels often at the expense of the younger sibling and themselves.

 

The words she used were 'We have enabled him to fly - but are now stuck ourselves'.

 

[Flora]

OMG that's incredibly sad

 

Sounds like that family would benefit from some councelling (or is it counselling??). Having an autistic child (or two) certainly changes the family dynamics, and often has an influence on what you do, where you do it, and when. The thing that keeps us going is a robust sense of humour.

 

Lauren

[nellie]

Hiya smiler

 

Yes! In my experience it does and for many reasons. Lack of understanding from others, especially family. Having to alter your behaviour to meet the needs of family on the spectrum, which can have a long term affect. Embarrassment families often have to suffer. Stress of constantly having to fight the system. Anxiety about the future. Feeling out of sync with the rest of the world and the sheer exhaustion of trying to cope. I could go on.

 

I'll give you a classic example. My son hated laughter of any kind and for years we had to suppress our laughter and keep our emotions on an even keel. I once had a great sense of humour but I've lost it, if anyone finds it, let me know!! I could have dropped it in the batcave but I'm not going in to look!

 

It does get better though.

 

Nellie xx

[Kazzen161]

I don't think "change" is the right word, but my family is certainly not as I had expected - a two-parent family with two NT children. I have been a single parent since T was 4, I had Twins (not the one child as planned) just before that and two of the boys have an asd.

 

I sometimes look at my friend who has a husband, three NT boys, a nice house, a job, holidays, etc, and even though her life is not all a bed of roses, it is so much better than mine.

 

Now T is 16 and the Twins are almost 13, I have given up on trying to have a more normal life - I feel sad for all the things that I and my boys are missing out on, but I cannot be bothered to keep fighting to maintain even a semblance of a normal life.

 

I am certainly not the person I would be if circumstances were different. It was lovely to go out the other evening to a quiz night, where only one person knew me, and to be me and not just a mother.

 

Karen

[jb1964]

We have a large gap between our two girls and the little one (3yrs) does unfortunately have to go without doing the things that I always took for granted that all kids do.

 

Holidays for example - I always had a Butlins/Pontins kind of holiday in a caravan/chalet - with kids clubs during the day loads of activities and disco/entertainment during the evening. We took our eldest daughter (12yrs AS) a few times when she was little and it was a nightmare - she hated the caravan (the noise of everyone because of the small area etc) she hated the kids day clubs (socialising/mixing and generally other kids having a run around) and hated the clubhouse even more - the loud noises etc was hell for her although at the time we didn't know why we just thought she maybe very quiet/shy etc and kept trying to encouraging her to go!!!

 

We now usually hire out a bungalow/house for a week in Tenby when she will visit the local museums/castles etc and the little one is trying ever so good to be quiet and good while the tour guide shows everyone around!!! or we'll have a week in sunny Majorca - but a very quiet resort and of course always providing she has a bedroom of her own where she can retreat for some quiet reading, TV or DS playing!! and no evening entertainment such as disco's etc.

 

I know other situations are the same - the little one loves going out socialising/shopping everything - and usually this is done without big sister (whom she like all little ones absolutely adores and looks up to).

 

I do think it is quite sad but I can't see any way out of it.

[oracle]

Does having a child with ASD change you as a family?

 

My answer to that is 'It's life Jim but not as we know it'

 

I can hardly remember my pre ASD life. At the moment I am struggling to meet the needs of two males who both share the same label but very little else. Every meal time is a nightmare. David does not want Matthew to move an inch and if he so much as knocks his plate or his cup David beings to give him a lecture about sitting nicely at the table Matthew objects to the way David chews his food (I'm up there with him actually) and so he complains that the noise that David is making makes him feel sick and unable to eat

 

We try so hard to have a 'sense of family' but at the moment we are failing. In my opinion ASD can consume life and extinguish and traces of where it has been. Sorry but that is how I feel at the moment.

 

Pre ASD dx I did have a life. I had a job which I loved and had just been offered a promotion that I had only ever dreamed about. I had a social life that I loved. Not your bog standard nights at the pub but running a Drama Group for children that took us all over the UK and saw us working alongside the Royal Shakespeare Company amongst other bodies of people. Although David took part in many of the productions after his breakdown aged 11 that all stopped and because the adults in the group having problems with Matthew it's now stopped altogether and I miss it.

 

We took the boys out of the system (our choice) so that we could give them both a chance to fly. However at the moment I feel as if we are all treading water with none of us actually getting anywhere. Neither of them want to leave the house these day unless it's something for them. Neither of them want to share the same room as each other and that means that Terry and often spend our days at opposite ends of the house.

 

So yes living with ASD has not only changed my life it's changed it beyond all recognition. That would not be so bad if that was acknowledged by the people who should understand. Sadly I don't think that it ever will be.

 

Carole

[baileyj]

Hiya smiler

 

Yes! In my experience it does and for many reasons. Lack of understanding from others, especially family. Having to alter your behaviour to meet the needs of family on the spectrum, which can have a long term affect. Embarrassment families often have to suffer. Stress of constantly having to fight the system. Anxiety about the future. Feeling out of sync with the rest of the world and the sheer exhaustion of trying to cope. I could go on.

 

that could have been me talking, my thoughts exactly.

 

I think the person who's life its changed most is my 12 year old step-daughter, she so looked forward to having a little brother or sister to play with, and then when Max came along its all turned out so different. Though he loves her dearly, its all on his terms. Grace often has to go without or not do things because of how it would effect Max, and at 12 its hard for her. She is so patient though.

 

Over time Ive come to accept how different our lives are and will be, I try to just live in each day, which is tough for me as I'm such a planner.

 

Jo

[lancelot]

Yes, it changes everything -- but it makes you so, so grateful sometimes when things go unexpectedly well. I mean, when you can get a thrill out of seeing a child bend down to help his kid sister up a scrambling net (he's been really charming today!), who needs normality? If he didn't have so many probelms, I'd take all the good bits for granted, I suspect.

 

DO NOT quote me on this next week when I'll be doing my nut as usual...

[jb1964]

Carole,

Can't imagine how you feel having two kids that you have to work around.

 

Having one and trying to explain all the time to the little one is heartbreaking enough - but trying to get two to fit in to the everyday kind of things that we all have to do together - when they often want so much isolation must be so difficult.

 

Chin up.

[Paula]

Yes it changes youre life.

 

The day my son was born our life changed imediatley.

 

Then gradually over the years we stopped doing stuff through fear of it setting of a meltdown.We stopped takeing part in extended family events,stopped inviteing family round,stopped going out for meals ect and gradually isolated ourselves.

 

All so we could accomodate our As son.Abnormal became our normal.Im used to it now.Haveing a child with autism or any child with a disability changes youre perspective on life instantly what was important is no longer important.

 

 

For me a good example of this was i stopped playing the lotery when we realised he was AS.Why because i thought whats money i dont need money and no amount of money can give me the one thing i realy want and that is for our son to be normal and live a normal life.Money no longer matters to me anymore or the aquisition of posesions.My priorities changed to my son and people not items.

[jb1964]

For me a good example of this was i stopped playing the lotery when we realised he was AS.Why because i thought whats money i dont need money and no amount of money can give me the one thing i realy want and that is for our son to be normal and live a normal life.Money no longer matters to me anymore or the aquisition of posesions.My priorities changed to my son and people not items.

 

Couldn't agree more with the principal of what you've said. But to be honest since my daughter's been diagnosed - I've never thought more about my finances and the future. I really need to sit down and go through exactly what cover (insurance etc) we have. I am so worried about the future should anything happen to us, whether she'll get a job whether she'll manage to hold one down, living on her own etc etc etc, and trying to ensure we'll be able to provide for her should things not work out as we'd like to have hoped.

[Paula]

Oh i do think about the future and what on earth will happen when im dead.I think you instantly become aware of youre own mortality.

 

I keep thinking i have to live as long as possible i have to be around to make sure he can cope.

 

Ive just been given the all clear these last few months after a cancer scare,cervical cancer the releif was intense.I dont take risk with my life i have to survivie if that makes sence.

 

 

 

This sounds awfull but ive a freind whoes son has fragile x and she had breast cancer she once confided in me that if it ever recured and was terminal shed kill herself and her son because no one would be around to care for him.Unfortuantly ive thought these thoughts at times too.

 

 

I cant bear the thought of dieing and leaving him behind if hes not able to take care of himself.

 

This is a terrible confession but i sometimes hope were all killed together or that he goes before me.That is my darkest secret i guess and now ive shared that.

[jb1964]

Paula,

 

I don't think that's a terrible confession - when you love someone so much and like you say worry so much about how they'll be after you've gone. I can't imagine how my daughter will cope - we have such a small family - none on my husbands side at all and I have one brother who we don't see because he doesn't like my daughter very much. It's become the worry of all worries.

[lancelot]

Paula and jb,

 

that's my big worry too. Before diagnosis, my brother had said he'd happily be legal guardian to my kids (as I would to his). Now he won't. He says he couldn't cope with C, although he'd take the other two if it came to it.

 

Guess I'd better live till 100 then!

L

[adamsmum]

It's changed my live. I worry somtimes about my other 2 boys. How will it effect them as thay grow and im realy scard thay will have ASD. It's a constant fear and having 2 with ASD it's not surprising . I think the worst thing for me is i spend so much time caring for them i forgot who i am do's that make sence.

[Flora]

I cant bear the thought of dieing and leaving him behind if hes not able to take care of himself.

 

.

 

 

Paula, thank you for sharing that, it's exactly how I feel too and it really is something hard to face. I have this awful image of William being one of those old men that horrible thugs throw stones at in the street. I imagine him being persecuted for being different, by nasty gangs of people. I'm in the process of taking out life insurance so that if anything happens to me all my kids will have a nest egg. This too causes it's worries that they will then fall victim to fortune hunters! I would like to think that the world isn't really such a bad place, but I find very little in human nature to prove that. Only this week, I have almost fallen out with some friends because of this sort of thing (friend's kids bullying William and the parent's trying to make out it's william's fault because 'of the way he is' ).

 

Lauren

[nellie]

I agree, the future for our children is a great worry.

 

Not sure if everyone is aware but if you leave money to your offspring and they need care, the local authority will use this money for their care.

 

You can protect this money for your offspring by setting up a trust fund. The following explains.

 

http://www.mugsy.org/davidkingham.htm

 

Nellie xx

[Flora]

nellie, I had absolutely no idea about that. Thank you for that information!!!!

 

Lauren

[lil_me]

You may think I am crazy already. But maybe more so with what I am going to say.

 

My ASD son has changed my life in many ways, but most of it for the better, in the last 3 years since my son started going through the diagnostic process I have changed

 

I am

 

More confident

More educated on all disabilities

More open minded

More of a fighter

Better at ignoring what others think

A better Mam

Have more empathy for others

More patient

More willing to be a doer rather than a talker, if I think something isn't right I do something

Better at managing money

Better at DIY

Better at managing my own time

More helpful

An advocate for my son, and others

 

 

 

List is endless, sorry I know this sounds like I am braging but I realised it is about time I looked at the more positive aspects of being a parent of a child with ASD etc.

[rainbow queen]

JUST WANT TO GIVE EVERYONE ON THIS POST A BIG HUG -ME INCLUDED <'> <'> <'> <'>

 

AND SAY CHEERS TO US ALL FOR COPING WITH OUR LIVES

 

 

 

 

THREE CHEERS FOR LIL ME-FEEL THE SAME

AND KAREN CAUSE ME A SINGLE MUM TOO XXX

 

AND PAULA THAT WAS VERY BRAVE TELLING US THAT-BROUGHT TEAR TO MY EYE XXXXX

Edited February 17, 2006 by rainbow queen

[hev]

i wish i could look at the positives,ive tried,i believe if steve didnt have his dx i would be a completely different person,i constantly worry about steven,my whole days are based around steven,his behaviour,worry about his future,i havent got a laid back bone in my body any more,i used to be so laid back but then i think if steve didnt have AS do NT children make you so worried about the future,i went out today and i got so resentful as i looked in a travel agent window and couldnt book a holiday for us all,ive tried abroad,england,taking a friend with him,him choosing the holiday but the holidays are horendous as he just cannot cope and ive cried every holiday so no more holidays,so i think it has affected us a family,as for social gatherings,whats one of them?we are the guests from hell

[lainey]

i'm the same as hev your whole life,s different ,i tend not to go any where really and everything revolves around him ,to me i feel like we as a family live in a bubble sometimes .

[Brook]

Paula, thank you for sharing that, it's exactly how I feel too and it really is something hard to face. I have this awful image of William being one of those old men that horrible thugs throw stones at in the street. I imagine him being persecuted for being different, by nasty gangs of people. I'm in the process of taking out life insurance so that if anything happens to me all my kids will have a nest egg. This too causes it's worries that they will then fall victim to fortune hunters! I would like to think that the world isn't really such a bad place, but I find very little in human nature to prove that. Only this week, I have almost fallen out with some friends because of this sort of thing (friend's kids bullying William and the parent's trying to make out it's william's fault because 'of the way he is' ).

 

Lauren

Lauren,

 

These are also my fears for the future, I get this terrible image of when my son is grown up, walking around

the town shouting out things to people and then getting beaten up. I hope this image is totally

wrong and that he has an enjoyable life, also I worry soooooo much about not being here for him,

infact for both my boys who have different conditions.

I feel like yelling out to the world 'please be kind to my boys they are my world', sounds silly probably

but I think you'll relate.

 

As for changing our lives, well, a definite YES, I love my boys with all my heart (as we all do) but

things can certainly be so dam tough and draining.

 

Brook

[asereht]

Can't think of anything else to add to this discussion .

 

Everything that has been said would apply here in one way or another,

especially the one about dying, it's one I try not to think about, but it keeps sliping in there when I least expect it.

 

I think I said on this forum before ,I had a scare last year with a breast lump and when I was given the all clear, the relief was unreal as I could just not bear to die and leave him behind.

 

I just keep thinking if I could live to be 81! he will be 55 by then so I will know if he can cope or not.

 

It's 40 years away!! Who else thinks 40 years ahead....

[Paula]

asereht

 

I think 40 years ahead.

 

 

I also think if i can get to say 85 then my son will be in his 60s and ill also know that he can cope. <'> <'>

 

 

 

I also have fears like the other mums and stuff on here that hell be the person who kids take the mickey out of or whoes branded as the local loony and targeted as the perpertrater of all dodgey crimes.If you get my drift.

 

 

 

But i also think of all the positives.And there are many.Haveing a disabled child changes youre view on life and some of it is for the better.In some ways i too am far far more confident about stuff,and i also think nothing that can happen now can be as bad as our son not being right so bring it on who cares.My life does revlove around my son,i fit in my daughter and husband around his needs.I feel guilty but its just how it is.

[clintess]

I don't think "change" is the right word, but my family is certainly not as I had expected - a two-parent family with two NT children. I have been a single parent since T was 4, I had Twins (not the one child as planned) just before that and two of the boys have an asd.

 

I sometimes look at my friend who has a husband, three NT boys, a nice house, a job, holidays, etc, and even though her life is not all a bed of roses, it is so much better than mine.

 

Now T is 16 and the Twins are almost 13, I have given up on trying to have a more normal life - I feel sad for all the things that I and my boys are missing out on, but I cannot be bothered to keep fighting to maintain even a semblance of a normal life.

 

I am certainly not the person I would be if circumstances were different. It was lovely to go out the other evening to a quiz night, where only one person knew me, and to be me and not just a mother.

 

Karen

 

 

thats excatly how i feel at the moment and i also agree with nellie.two of my children are adhd and the other asd.both with sleep problems.this caused an horrendes strain with my husband and i and we have been separted now for three years.at the moment we just exist.i cant leave my asd son for more than a few mins because of his dangerous tendenciesbecause of this i have to go upstairs when i put the other children to bed at seven pm and that my nights every night.i limited when its sch hoildays has he has meltdowns and cant cope being out.i feel sorry for my other children they miss out on some much and it does get me down sometimes.i dont even remember the last evening ive had out it was so long ago.everyone is talking about their forth coming holidays and i and the children as usual will be at home.

sorry guys for going on just have a bad time @ mo.

[DaisyProudfoot]

I've been pondering what to say to this question as it's not an easy one.

 

I can't really say it has changed us as a family because I don't know what our family would have been like not having a child with ASD.

 

If you are talking about the wider family such as grandparents, aunts, uncles etc I would say that a lot of adjustments are having to be made because many of them don't know how to deal with the situation. (God, this isn't making any sense at all, is it?)

 

Urmmm... ourselves well, Martin wasn't dx'd until he was 9 so we'd all learned to deal with his little ways in our own ways. I think having a child with ASD has affected our 13 year old the most - he is really having trouble getting to grips with the whole thing, the 13-year-old has dyspraxia (which I have to admit I don't know much about) but I believe it also affects his cognitive functions as well as his motor functions so I suppose he may well be having difficulty understanding it all himself.

 

Hubbs and I are adjusting and understanding Martin's AS is making him easier to live with ... I think

 

Oh sorry.....I can't go on explaining this any more, I knew I would get all upset if I tried to write it down .... this kind of stuff is just too much I guess ... sorry, I find it better not to talk about it ... it's too hard ... sorry it really is ....

 

I did try though.......

[Paula]

Daisy <'> <'>

 

You are making sence.Everyone is.

 

 

I too get upset when i talk about what it means to have a child on the spectrum.I tend to hide my fears with laughter and trying to see the funny side of his behaviour.

 

But its bloomeing hard.People dont realise all the little ins and outs of it all.

 

I dont think its wrong to say it fundamently changes how you live youre life.It has us.Our family life is totally abnormal.But its become our norm.And i only realise this when im forced to mix with families who have nt kids and then i realise how our lifes are totally controlled by our son.It hits you smack between the eyes.

 

Thats when i get upset thats when i go home and cry and think why ect and realise just what weve lost.

 

Weve lost the ability to do stuff on spec,to walk about at ease im always always on edge when were out and about always dreading the meltdown and even if it doesnt come im always scared it will.I cant enjoy stuff.I live in fear of what might happen howll ill handel it other people stareing ect.

 

 

Our Nt teenage daughter has missed out i feel so much on stuff.Ive had her screaming at me that she wishes hed never been born that she hates his guts.That hurts like hell too.Then ill find her sat with him being nice and stuff and hes so happy coz shes spending time with him and i feel nar she doesnt mean it realy shes just angry at stuff i guess.

 

 

 

Would i change him and make him Nt.Yes yes i would .I love him to peices i adore him even though he makes me tear my haire out but if i could be granted one wish one miricle it would be to wake up and hed be normall.I hate myself for that at times.