Alone.

[oxgirl]

Hi all, I've joined up today because I feel so desperate for someone to talk to. I'm just feeling so alone at the moment and like nobody understands. My son is 12 (AS) and I just feel so sad for him at the moment, especially with the summer hols coming. I feel like other kids his age will be off out with their friends going swimming or to the park or whatever 12 year olds do, and he'll be stuck at home with me. He hasn't any friends and it's just breaking me up.

 

Just when I think I've come to terms with his condition and all that it means, suddenly I realize that I'm not and I'm still mourning for all the things he'll never have. My dearest wish for him is that he could just have a friend and some independence, but I don't think he ever will and I don't feel I can cope with the realization of it. It feels like everyone else's kids are growing up and getting on with their lives and we're still stuck in this vacuum and it's so isolating, isn't it. People just take things for granted and they say things like, 'oh, he'll be okay' or 'why don't you take him here or there' and they just don't understand that the things they take for granted just aren't possible for us.

 

Sorry to ramble so, but I just feel like I need some support at the moment and for people to really understand what I'm talking about.

 

Thanks for listening.

 

~ Mel ~

[annie]

Hi Mel <'> ,

 

Welcome to the forum

 

Please don't worry about rambling, we really do understand how you are feeling. Seeing your child have no friends is heartbreaking (been there) . Other people's well-meaning comments are awful too.

 

We're all here for you.

 

Annie

xx

Edited July 6, 2006 by annie

[oxgirl]

Thanks so much for your reply Annie. It's so hard to watch your kid suffering isn't it :/

 

~ Mel ~

[mel]

<'> for you both,. It is hard, but we are here for you. welcome to the forum <'>

[Karen A]

Hi Oxgirl so glad you joined.Sorry you feel so isolated at the momment.I joined a few weeks ago.The crew here are amongst the most supportive,caring,knowledgeable people I have had contact with.I know many will understand your feelings and have similar experiences.It is difficult when people give you simplistic answers such as ''he will be fine''-it is just people say some rubish things when they don't know how to help.Hope you feel at home here.Karen <'> <'>

[marshmallow]

Hi, Welcome to the forum <'> <'> <'>

[oxgirl]

Thanks so much Mel!

 

~ Mel ~

[oxgirl]

Thanks a lot Karen. I'm starting to feel very welcome already!

 

~ Mel ~

[Suze]

hi mel <'> ..........do you have a local support group?.................what interests does your boy have??......................do you have any other kids?...........what about bike rides........visiting the museum..........the zoo?........this forum is a lovely place and you will find lots of support. <'> suzex

[oxgirl]

Hi, thanks very much for your welcome. This seems like a very busy place

 

~ Mel ~

[oxgirl]

Hi Suzex, thanks very much for your reply and your welcome.

Yep, we have a support group fairly close but I haven't been able to get along for so long. My lad likes Lego, Lego and more Lego ........... oh yes, and Lego. He's my only one. He can't ride a bike and he doesn't enjoy going out for various reasons, so a trip out somewhere can end up being a chore rather than enjoyable. Gosh, I sound so negative, don't I!!

It's great just to have people to talk to who are in similar situations, although all different of course, and who know a bit about what I'm talking about <'>

 

~ Mel ~

[mel]

You dont sound negative, and there is nothing wrong with lego....me and my 6yr old son love it

[Bagpuss]

Hi Mel,

 

Welcome to the forum I'm Debs and I have 3 children, our youngest daughter aged 5 has ASD (dx nov) and muscular dsytrophy (dx at 3). I joined the forum for similar reasons to yourself. Have found it so worthwhile...the members here have huge hearts If you have no support network close it can be so isolating. We all need someone to talk to when things get tough. We are thinking of joining a local support group next month. Take care <'>

[brooke]

Hi Oxgirl

 

Im so sorry your feeling down i oftern have those days too. I have just recently joined and everyone is very kind and supportive. Its nice to speak to people who really understand. We have a befriending scheme in our area which is really good if you contact the NAS they might beable to help for your son.

Take Care

Love

 

Brooke

[UltraMum]

Hi Mel - welcome

 

<'> <'> <'> Sorry you're feeling low <'> <'> <'>

 

Do you get any respite or is it just you and your son?

 

It can be really tough in the summer holidays

[oxgirl]

Hehehe, no Lego is great isn't it, it's just that I can't stand the sight of it anymore!!

 

~ Mel ~

[oxgirl]

Hi Bagpuss, nice to meet ya It does really make a difference when you feel that people are in the same boat and understand some of what you're going through. Glad it's helped you. Look forward to getting to know everyone <'>

 

~ Mel ~

[oxgirl]

Hi Brooke, thanks for that. I think sometimes it's worse now that my son is getting older, all the stuff that he 'should' be doing he just isn't yet and as each year goes by I just keep thinking 'when will this get any better', ya know?

Yes, we had a befriender last year, but she only lasted one hour a week for a couple of months and then she disappeared, but it was nice while it lasted

Take care

 

~ Mel ~

[oxgirl]

Hi MotherEve, thanks for the welcome,

Nope, don't get any respite, he's too 'able' I think. I'm lucky to have a good hubby though, but he doesn't always want to talk, ya know?

Are you dreading the hols as well then?

 

~ Mel ~

[jb1964]

Hi Mel,

 

Welcome - this place has been my lifesaver for the past couple of months - I'm sure you'll get lots of support and advice too.

 

I know it's so difficult - my daughter will be 13 on saturday and I think it's only this past week or two that I've started to wake up to the fact that this is it. It's so hard when you see them entering this phase of their lives when everything is happening and they are just not part of it.

 

When they're younger you can invite kids over and try to get them involved - but the older they get - peer pressure kicks in hard and they become isolated.

 

I'm still hoping for a silver lining - I hope you get one too......

 

Take care,

Jb

[oxgirl]

Hi Jb, thanks so much, you hit the nail right on the head, it sounds like you're going through just the same thing.

 

Like you, I didn't feel so despairing when he was little, but now he's a 'big kid' it's suddenly very real and scary. I guess I always thought things would get better and now I just can't kid myself that they will anymore. I just keep thinking back to my childhood, the stuff I used to do with my friends out on our bikes, etc. etc. and I wonder what happy memories he'll have from his childhood - the inside of his bedroom - and it breaks my heart!

 

Does your daughter have any friends at all then?

 

Here's hoping things will get better for us all soon

 

~ Mel ~

[Suze]

Have you tried your support group to try to find a child similar to your son?At our local group we have a few social outings etc.What I found was that the kids found others with a similar obsession, like computers, machines,etc.My boy has just a few mates all acquired as they shared the same interest.My boy loves his lego too, he mixes it with blu tac, motors (taken from toys), cellotape etc and makes brill designs, with a motor he had from a toy he constructed a helicopter with motorised rotors.

[jb1964]

Hi Jb, thanks so much, you hit the nail right on the head, it sounds like you're going through just the same thing.

 

Like you, I didn't feel so despairing when he was little, but now he's a 'big kid' it's suddenly very real and scary. I guess I always thought things would get better and now I just can't kid myself that they will anymore. I just keep thinking back to my childhood, the stuff I used to do with my friends out on our bikes, etc. etc. and I wonder what happy memories he'll have from his childhood - the inside of his bedroom - and it breaks my heart!

 

Does your daughter have any friends at all then?

 

Here's hoping things will get better for us all soon

 

~ Mel ~

 

Can't believe you've said that either about thinking back to your childhood and comparing - it has been the main thought it my head over this past week or so - I don't know whether it's the nice warm weather making me think back to when I was a child and I loved my bike - and winberry picking on the mountain and generally out every day doing something going somewhere - instead I see my daughter in her bedroom on her PC or DS or maybe sometimes reading/drawing and just feel so sad. I've even bought myself a mountain bike to try and persuade her to have another go at learning to ride - but she's too sad and depressed at the moment as her special birthday is going to be 'nothing special' is what she told me (I think because she has suddenly woken up to the fact that she is lonely - but can't express her sadness - or doesn't even know why she's sad).

 

No she has no friends at all at the moment - she did have one or two that stayed kind of friends with her up until she started comp. but once they go to 'big school' it's all change and unfortunately for her they've moved on.

 

Take care,

Jb

[oxgirl]

Hi,

I used to go regularly on support group outings but I never managed to find another child that connected with my lad. It's a shame really, because at the end of the outings I'd almost come away feeling more isolated than before because somehow each little family unit seemed to be in its' own little bubble, if ya know what I mean.

I'm still searching for that elusive child to click with mine but he has no interest in computers or playstations or football or all the stuff that other kids his age might enjoy, he just wants to play with Lego, but I'll keep on looking. I'm really glad you've found friends for your lad.

Take care.

 

~ Mel ~

[oxgirl]

Aw, I'm so sorry!! It's exactly the same for me, yep. I'm sure it is the sunny weather making us realize what our children are missing, and also knowing that maybe other kids you know of that age are off out and about now and getting more freedom and going here and there with their mates and ours are left behind, like you say. I've been feeling terribly sad as well, it's just not fair is it. We can only hope that as they get even older they might find a way. I tried for months to teach my lad to ride a bike but he just couldn't do it, not that he really wanted to!!

 

Yes, I know what you mean about them feeling lonely but not really knowing why, it's almost as if they get an inkling that there is something 'missing', but they're not sure what it is. I really hope your daughter can find some happiness on her birthday, even if it's only a lovely cake

 

It's nice to talk to someone who really knows how it is, although I'm also sorry that you do!

 

~ Mel ~

[UltraMum]

Nope, don't get any respite, he's too 'able' I think. I'm lucky to have a good hubby though, but he doesn't always want to talk, ya know?

 

Same here - 'too able' and hubbies is fine at the practical stuff (he irons ) but talk and emotional support not so much

 

Are you dreading the hols as well then?

My personal nightmare time

[oxgirl]

Hey, my hubby irons too!! Hehehehe, his mother taught him well. We don't always 'need' to talk to each other about the ins and outs though I guess, 'cos we're living it so I know he understands, if ya know what I mean. It's the emotional support that's quite often lacking with the hubbies though, isn't it

 

Sometimes I feel like my lad is right in the middle, too able for some things and not able enough for others, so he ends up with almost nothing, it feels like. He's an in-betweener!

 

Aw, hope you survive the hols. I used to enjoy them, but this one I'm dreading (*shudders*).

 

~ Mel ~

[lancelot]

Mine (aged 10) is a big Lego obsessive too -- are you anywhere near Legoland? Block booking for all of us for the summer holidays please!

 

L

[oracle]

Steps in the radical free thinker with the BIG mouth - that's me.

 

I sort of look at this totally differently mainly because my 19 year old son (well he is next week) with AS gave me a reality check a few years ago, when he asked me if I wanted him to do things because 'he' wanted to be doing them or because 'I' wanted him to be doing them. Of course the answer was that it was me I had preconceived ideas about what a lad his age should be doing and that did not include sitting in his room alone and either playing on his computer or watching TV or playing with Lego, which he still loves to do However that was what he wanted to be doing and that was even harder to accept. He hated leaving the house and hated the idea of having to mix - so why was I trying to make him? Because I thought he should be doing it.

 

I do have a 9 year old with ASD who wants friends, needs friends, and tells me he would die without them. But that was not the case for my elder son.

 

Although it was hard I backed off and let him be. Now aged 19 (next week I know I already said) he's planning a meal with his mates plural, a meal with his dad, a meal with us and a night out with his oldest Bro, because now the time is right for him to do these things.

 

I am not trying to be controversial here (which makes a change) because if your son is like my youngest with ASD then I know what it's like wanting the friends but not being able to make or keep em Either way it's not easy.

 

Welcome it's a great place myself excluded.

 

Oracle

[loulou]

Hi oxgirl,

 

Welcome to the forum. I think oracle has a really valid point there. I sometimes wish my son (age nearly 8) was doing things other 8 year olds "should" be doing, but he's not interested (only in trains and playmobil!).

 

He would love to play with other children, but it always goes pear-shaped because he only wants them to do exactly what HE wants them to do! After ten minutes they've had enough of him .

 

I sometimes wish i could clone him, then he could play trains with his clones all day and they'd all be happy!

 

As for the summer holidays, i'm not looking forward to it much. I'm going to Wales for 2 weeks, so he'll be happy watching trains , but i don't know what we'll do the rest of the time.

 

I hope you find plenty of support here (i did),

 

Take care,

 

Loulou xx

[pepper]

hiya and welcome *gasp* lots of interesting tangents

 

 

but i have to say, with time your concept and your childs wishes sorta swivel about! ive an almost 14 yr old who announces often lately that hes very happy and popular eno at school ( recon i need to stop flapping and let things lie) tho it isnt how i view my sons life, but as long as thats how he sees things, ill sit back and pray ( tho 2 years ago all was a different story as he took forever to fit into mainstream secondary school)

 

because basically - my lad isnt like any of his peers, but as long as they accept him and socialise in a fashion, and hes happy at present. On a lighter note my two NT daughters dont seem to need other freinds outside school and most children dont play out as we did in our 'halcion days' lol

[pepper]

[pep doesnt know how to delete a dual post]

Edited July 6, 2006 by pepper

[pepper]

Steps in the radical free thinker with the BIG mouth - that's me.

 

I sort of look at this totally differently mainly because my 19 year old son (well he is next week) with AS gave me a reality check a few years ago, when he asked me if I wanted him to do things because 'he' wanted to be doing them or because 'I' wanted him to be doing them. Of course the answer was that it was me I had preconceived ideas about what a lad his age should be doing and that did not include sitting in his room alone and either playing on his computer or watching TV or playing with Lego, which he still loves to do However that was what he wanted to be doing and that was even harder to accept. He hated leaving the house and hated the idea of having to mix - so why was I trying to make him? Because I thought he should be doing it.

 

I do have a 9 year old with ASD who wants friends, needs friends, and tells me he would die without them. But that was not the case for my elder son.

 

Although it was hard I backed off and let him be. Now aged 19 (next week I know I already said) he's planning a meal with his mates plural, a meal with his dad, a meal with us and a night out with his oldest Bro, because now the time is right for him to do these things.

 

I am not trying to be controversial here (which makes a change) because if your son is like my youngest with ASD then I know what it's like wanting the friends but not being able to make or keep em Either way it's not easy.

 

Welcome it's a great place myself excluded.

 

Oracle

 

pssst oracle - i really LIKE ur reply its upbeat and optomistic

 

oh, btw mel <'> ive always found that older or younger kids got on far better with my son, own age group? UHU always a drama, so maybe focussing on a different peer group will help?

Edited July 6, 2006 by pepper

[Suze]

...........sorry , not trying to take the thread off on a tangent..........but Carole is spot on with her thinking..........go with your boys thoughts and needs.When my son was younger we tried all the clubs/activities under the sun.........none lasted .He does,nt attend any clubs, never plays out, he has 2 friends who come to play a few times a month.He actually prefers hanging around with his poppas mates ...........talking engines and stuff and cutting the grass with the lawn mower .

[justine]

Hi Oxgirl

 

Know where your coming from! Posted earlier about after school blow out Bob had with one and only friend! My heart just dropped to my feet.

 

He also received two party invitations today, I asked him if he wanted to go and his reply was that he was far too busy and would be unable to attend!! He did say we could send the presents though!! I ask you he's 7.

 

My Husband summed it up in a review meeting (everyone majorly concerned about social interaction) that perhaps he just enjoys his own company. Which is heart wrenching for me and I get teary eyed just thinking about it. My Husband is very much like Bob that way too, so to him it is completely normal (I certainly question how he would score on GARS/GAD form!!!). Not that he's much help emotionally either!!

 

One of the most upsetting picture's in our house, is when his 13 yr sister (NT) has her girlfriends round and he's hanging around them like a lost part trying to get involved. And to her he's a pain!

 

So like yourself joined up yesterday. Coming on here just helps so much. Hope you start feeling the "lift" work soon.

 

Just

[pepper]

One of the most upsetting picture's in our house, is when his 13 yr sister (NT) has her girlfriends round and he's hanging around them like a lost part trying to get involved. And to her he's a pain!

OHHHHHHHHHHHH no no no! thats actually totally normal

[jen]

Hi Oxygirl,

 

Sorry you are feeling so low. It so difficult ASD kids and friends. We always feel they need to make friends but in reality they are happier not having friends with all the demands it brings.

 

 

Jen

[justine]

Sorry Pepper

 

Actually your right that is "normal"! I knew it would set in sooner or later. Well that just show's you I'm completely off this planet!!

The medicine is calling I think!!

 

Thanks for the laugh!! Didn't think I would smile tonite, well not without the help of Merlot.

 

Cheers

Just

[oxgirl]

Mine (aged 10) is a big Lego obsessive too -- are you anywhere near Legoland? Block booking for all of us for the summer holidays please!

 

L

 

Hiya, it's the noise of the rifling through the Lego box that gets me!!

We took him to Legoland last year during term-time and it was really quiet. He adored it. Have you been?

 

~ Mel ~

[pepper]

Sorry Pepper

 

Actually your right that is "normal"! I knew it would set in sooner or later. Well that just show's you I'm completely off this planet!!

The medicine is calling I think!!

 

Thanks for the laugh!! Didn't think I would smile tonite, well not without the help of Merlot.

 

Cheers

Just

 

laughing is good for the soul ( so is the industrial sized vodka bottle i bought) sons on school overnight trip - im sick with worry so plan to be sick with alcahol poisening by morrow

 

hahahahahha least he went away with one of the more 'understanding teachers' Is it abnormal to imagine that your awfully bright but hideously immature son might end up buried under hadriens wall by rest of his class - rather than examining it????