does anyone feel lonely with their autistic child?

[Julieanne]

I have increasingly been feeling more lonely as time goes on, my son was diagnosed in may 2003, he is now 8 years old, and i dont have people around me that understand the all night with no sleep, shouting outbursts, trying to escape constantly, crying for no apparent reason, hitting, biting, pinching, etc etc

 

i have been told to ''simply get him adopted if i cant cope with it'' and to me that really is not a answer, i could never do that. that comment really upset me.

 

then i get ''well you have been dealt this card you have to get on with it'' im like '' you think i dont know that!!'' grrrrrrrrrrrrr! when all you want is someone to talk too that can understand what it is you live with on a daily basis and you love your little child to peices but you just need to vent soemtimes....these people seem to be a rarity!

 

does anyone else feel isolated?

 

Julie xx

[bid]

Absolutely <'> <'>

 

It also meant that I didn't make friends with the other mums at school in the same way, so I had no real support system there either.

 

Even when he got older and did make some friends, it was nearly always me who invited then over for sleepovers, etc. He hardly ever went to their houses

 

As I was also the first one amongst my friends to have kids by 7 odd years there was very little understanding there, even though they tried to be 'nice'. I found out years later that the person I thought of as my 'best friend' had let it be known that she thought I was just making a fuss about how hard it was when my DH went back to uni for a year, leaving me with a 6 year old with AS, ADHD and Dyspraxia and a 5 month old, and he could only afford to come home every other weekend!!

 

It has got better for us as my DS has got older (19 next month ). He now does things I honestly never thought he would be able to manage, and I've got a job I love with brilliant colleagues who all understand about autism.

 

I was also diagnosed with AS myself last year, so a lot of the things I struggled with all those years have also been put into perspective.

 

Bid

Edited June 23, 2008 by bid

[smiley]

does anyone else feel isolated?

 

Julie xx

 

Yes. Very. <'>

 

We plod along through life quite happily. Then something as simple as a trip to the park can upset me. It's becomes so obvious how 'different' M is to other children.

The majority of my friends have children with some kind of special need. I did worry for a time that it wasn't such a healthy thing to have - and that i should have a mixture of people around me.............. But, to be honest, the friends i did have, that have since disapeared (soon after M's dx!), are far from the true friends i have now.

 

But, yes, sitting at home, dealing with behaviour, managing our routine, and sometimes restricted life...............very, very isolating.

 

T'is why were all obsessed with the forum!!

[Flora]

But, yes, sitting at home, dealing with behaviour, managing our routine, and sometimes restricted life...............very, very isolating.

 

T'is why were all obsessed with the forum!!

 

Smiley, I spent about 15 minutes typing a reply to Julie earlier, trying to say what you've just said in those two sentences I gave up on mine because it read like gobbledygook!!!

 

Julie, ..... what smiley said <'>

 

I will add one thing, for some of us, particularly those with high functioning kids, the chaos does calm down when they get a bit older; it's not exactly easier just less chaotic.... my youngest is 11 now, but when all of my mine were a lot younger that feeling of relentless hard work was much more intense. It's still hard, but in a different way.

 

Flo' XX

[smiley]

 

Yup, woman of few words, me..................and occasionally they make sense!

 

<'>

[MandyB]

I have increasingly been feeling more lonely as time goes on, my son was diagnosed in may 2003, he is now 8 years old, and i dont have people around me that understand the all night with no sleep, shouting outbursts, trying to escape constantly, crying for no apparent reason, hitting, biting, pinching, etc etc

 

i have been told to ''simply get him adopted if i cant cope with it'' and to me that really is not a answer, i could never do that. that comment really upset me.

 

then i get ''well you have been dealt this card you have to get on with it'' im like '' you think i dont know that!!'' grrrrrrrrrrrrr! when all you want is someone to talk too that can understand what it is you live with on a daily basis and you love your little child to peices but you just need to vent soemtimes....these people seem to be a rarity!

 

does anyone else feel isolated?

 

Julie xx

 

 

Wow, Julie, I so know how you feel! My DS is only 4 though and we're just taking on the reality that all his stuff is not "just a phase" - something I had been trying to convince myself for a long time now!!! The days can be so hard, especially with no family nearby to help. Isolated? yeah, most days. It creeps up on you......Let's keep battling on though I guess, and have a good rant on here.

Take care, hope for a better couple of days to give you a break!

Mandy

[Zosmum]

Yes very alone at times. but you get through it somehow, just don't know how

perhaps it's the chaos just takes your mind off it for a while

 

Keep on smiling

 

Oh and coffee and chocolate helps

[bikemad]

Yup same here I feel very alone and dont have much in the way of a support network family wise either-yesterday with the party fiasco etc n my dp was working n I just wanted to cry tbh cos I just didnt know how much more I could take.

[Enid]

Oh yes! my son prevents us going all sorts of places now, and even when we do go, such as to a family party last weekend I am a nervous wreck in case someone/something anything! sets him off and am so relieved to get home. The others often miss places/event cos we cant take J, and the awful thing is he used to be lovely till about 6 months ago and now we live in a nightmare, walking on eggshells and increasingly isolated, thank god I found this website. Enid

[Frangipani]

I sort of learned to grow into my isolation and make it a happy place. I dont mind it so much now. We are all closer as a family, I have this forum on the other side of the globe. I still have friends, interests, hobbies, and a list of 101 things to do when I feel isolated, so I guess I am learning to live with it.

 

But, at times I say who am I kidding. Not sure if I am happy or not.

 

So I just don't think..... iykwim

 

<'> <'>

Edited June 24, 2008 by Frangipani

[oxgirl]

Yes, it is very isolating. Jay hasn't a single friend and neither do I. I have no family near either. When Jay is at school, most days I don't say a word to a single person other than the odd shopkeeper. I only have DH, don't know what I'd do without him. I used to take comfort in running but now I can't even do that because I've injured my hip and I feel like it's the only thing that was for ME and now I don't even have that.

 

~ Mel ~

[Zosmum]

I sort of learned to grow into my isolation and make it a happy place. I dont mind it so much now. We are all closer as a family, I have this forum on the other side of the globe. I still have friends, interests, hobbies, and a list of 101 things to do when I feel isolated, so I guess I am learning to live with it.

 

But, at times I say who am I kidding. Not sure if I am happy or not.

 

So I just don't think..... iykwim

 

<'> <'>

 

 

Can you please tell us some of the 101 things on your list, we might be able to try a few

[Frangipani]

Can you please tell us some of the 101 things on your list, we might be able to try a few

 

But then that would be my list.

 

All you need to do is when you are in a really good mood. Sit down with note pad and pen and write down all the things you enjoy doing. Things you are good at. etc. Before you know it, you will have your very own list of 101 things to do, to lift your spirits. iykwim.

 

So when you are going through a bad patch. You will remember that list and find something happy and positive to do.

 

 

<'>

[Sooze2]

Me too. When someone asks how DS is I tend to say OK and change the subject by asking them what they've been doing which they are very happy to talk about. A couple of "freinds" really put me down earlier in the year and so I just try to avoid talking about real things now which is sad. When I said he may have a form of Autism one freind said "he can't have he talks and has freinds, my mates boy has it and he is practically mute" she then went on to ask why he didn't have a statement if that was the case. I gave up and haven't discussed it since.

[pookie170]

Definitely sometimes feel that there's a vast, whistling void between me and other mums-and oftentimes, my friends as well......... You've seen my recent posts re looking at higher schools for my AS son? Told my best friend about us embarking on this journey, and that one of the schools was a residential one. Her reaction made me immediately furious, then guilty (and I was angry at MYSELF for feeling that way, to compound the fun!!) and now I'm terribly disillusioned and very,very hurt.........And I also feel that I'm mourning our friendship slightly. Cuz it's changed now, and it's not gonna go back....

 

I just get tired of trying to explain the realities of life with an AS child. She thinks she understands, as she's been around his whole life....and yet she's so innocent of the baggage that goes with the DX, and all the wrangling that accompanies it-with agencies, professionals,officials....and the more personal ones. She knows me so well and yet shes so oblivious,(albeit inadvertantly) of a large part of my life...

 

I love my son- it's not him or his condition that causes this lonlieness, its other people.......they really dont understand. It's like Groundhog Day in adolescence.....and I'm smiling again- just thought of Kevin and Perry!!

 

I do applaud Fran's sentiments,and try to emulate them myself......... but it can be hard to muster the energy to muster some energy some days!!!

 

Esther x

[bikergal]

Yes, very lonely. I feel very sad that the world seems to have such a big problem with her and that the world is such a big problem for her. It just never seems to end, I sometimes feel so trapped...that I'm never going to have a life ever again because she is so dependent on me. Then I feel guilty because I know how hard life is for her, and that I'm probably the only one that understands her, which is why she clings to me so tightly. She is having a tough time at the moment, I just wish people would accept her for who she is. This morning she pulled one of her cuddly toys out from the cupboard (it's one of those one's that play 'happy birthday' when you press its tummy), pressed its tummy and looked at me. I said "that's why you wanted that out" (she hadn't played with it for ages), she gave me a HUGE grin, I gave her a hug...like hugging a piece of stiff wood....but that moment was priceless. She actually thought of me.

[Frangipani]

I do applaud Fran's sentiments,and try to emulate them myself......... but it can be hard to muster the energy to muster some energy some days!!!

 

Esther x

 

Ah but it isnt like a to do list. e.g. one of the things on there would be sitting on the beach doing absolutely nothing, watching the waves roll in, in a relaxing layback chair, sipping a glass of wine or hot tea. Alone, or with a friend.

 

 

xx

 

<'>

[Julieanne]

Yes, very lonely. I feel very sad that the world seems to have such a big problem with her and that the world is such a big problem for her. It just never seems to end, I sometimes feel so trapped...that I'm never going to have a life ever again because she is so dependent on me. Then I feel guilty because I know how hard life is for her, and that I'm probably the only one that understands her, which is why she clings to me so tightly. She is having a tough time at the moment, I just wish people would accept her for who she is. This morning she pulled one of her cuddly toys out from the cupboard (it's one of those one's that play 'happy birthday' when you press its tummy), pressed its tummy and looked at me. I said "that's why you wanted that out" (she hadn't played with it for ages), she gave me a HUGE grin, I gave her a hug...like hugging a piece of stiff wood....but that moment was priceless. She actually thought of me.

 

 

it made me well up reading all these posts, you end up feeling like your completely on your own, yet i read these posts and know that im not! when you said bikergal about your daughter giving you a huge grin, i just smiled so wide, that is lovely, she sounds adorable as all the children we have...

 

but as others have said there is a void, something missing and like you bikergal, my son relies heavily on me, i wonder if im ever going to have a life again. it has stopped...dead...im his mum now and that as selfish as it may sound to others, for me, incredibly hard.

 

I too have had friends that i ''thought'' understood but when it came to the crunch they evidently just cant or choose not too as it is easier! when i see parents with mainstream children being told off for mundane things, i look at them and think '' you have it sooooo easy...you will have your children leave home and live their life to the fullest, you can have friends that dont look at you or your children differently, you wont ever feel the loneliness parents like us feel''

 

I dont mean that to come across as bitter, but i think you may know what i mean!

 

I have this empty feeling that i dont think will ever go away, and i wonder if this is still part of the grief that i feel.

I can look at other families and they do ''normal'' things, that makes me feel lonely...always gets to me.. :tearful:

 

hugs to everyone who feels this way

xxx

[morgan and alexandra]

Hi, just wanted to add and say yes I too feel lonely and very isolated at times. A couple of my friends have been good but they live so far away now that I dont get to see much of them. Family support is minimal. I think the problem arises when family members only see my DD for a short amount of time and they just see her being "NAUGHTY". I was relieved when i went on a weekend break with my mum and she finally saw what I had been trying to tell her for YEARS. She was devastated and cried and told me how sorry she felt for me!!!! I don't want sympathy I NEED support and sadly it hasn't been forthcoming. Friends are the same sadly but it is their loss as my daughter has many good qualities and I love her dearly. I love the fact that I can come on here and see that I'm not alone and we are all in the same boat, just trying to give support and love to our children and partners and that we can all come together and offer support and tips to each other.