hit a brick wall - not literally!

[elun1]

I dont know if anyone else has ever felt like this but I've had a kind of eureka moment with regards to my youngest ds aged 7. He is at the severe end of the spectrum and has severe learning difficulties and epilepsy too. It's not really a good realisation but I feel like the years of research, reading, programs and therapies are pretty futile really. I mean they might help a bit but he is never ever going to live independently. He is always going to stim and bounce and rock. The ed psych said recently that he will even need constant supervision with things like loading the washing machine. I just dont feel theres much point to it all really. I envy my friends at work and I want a normal life tbh. Today I have cleaned up 3 lots of poo because I just cannot toilet train him. I am sick to death of it. My eldest has just been diagnosed too and I just dont have the energy to help him. I dont know whats the matter with me but out of the blue earlier I just started crying cause I just cant see an end to it all. It is like being on an eternal train journey but I never asked to get on this train and there is no way off

Sorry this is a horrible self indulgent post but I feel really ###### tonight

Elun

[Bagpuss]

It's not self indulgent Elun, your human <'>

 

I can't imagine our youngest ever living independantly either, and we always talk about the future now in terms of her being with us. All our plans have been reshaped, even down to discussion about our wills (if she outlives us), which is so scary at our age......but we have to think about the future in a way our friends don't. We are fortunate though, because youngest DD can communicate well and is toilet trained, so I can't imagine how painful it must be for you.

 

I can also appreciate how hard it is to have a second child diagnosed because we were in the same situation with our eldest DD.

 

Thinking of you and sending huge, huge <'>

[Enid]

Elun, <'> <'> <'> My heart went out to you when I read this, my only advice is one day at a time, and accept ANY help offered, try to get out on your own, even for a walk. My son is not on the severe end, but with age has become violent/agressive and I too think like you some days, like there is no end in sight. sending you lots of <'> <'> <'> <'> . Enid

[Bard]

No. I haven't ever felt like you because I've never had to carry as much as you do and will in the future.

And you're right, it isn't fair and it's not what you asked for.

You are not being self-indulgent at all, you are overloaded and seeing the future, and it's tough.

That's why I get annoyed with all the 'God gives his special angels to those who can cope' mantras.

You cope, and go on doing so because you love your children, and because of that there are few other choices available to you. If you give up, what next? <'>

I'd grab whatever help I could get, from whatever sources I could and then go hunting for whatever else was available.

 

There will be others here that know how you feel, but all I can do is say you have my sympathy and admiration and feel free to rant and yell as much as you like because you are entitled to.

[Sooze2]

Sending some of these your way <'> <'> <'> You deserve them by the bucket load.. Ranting is good, getting the feelings out on paper (or screen) is good therapy they say, its not self indulgent its called being human. <'> <'>

[Tally]

elun <'>

[bid]

Elun, all I can do is echo everything Bard has said <'> <'> <'>

 

And you are amongst friends who can listen, even if we can't do anything else <'>

 

Do you get any respite at all?

 

Bidxx

[elun1]

<'> <'> Thanku everyone yes I get a night a week which I know is loads really. I just literally cannot stop crying tonight. Dont know why, I was alright earlier

[madme]

Lots of hugs!

[bluefish]

as I clean the poo from my lounge carpet I understand! My house smells of urine! Tomorrow you will feel better.I worry about the future and that my ds will never live independntly. I am scared.He smears and he wees wherever the fancy takes him and it's hard and it's horrible. But it will be ok. we have to beleive that.

Keep your chin up and remember some of us are going through the same. it wont always be like this..... We will have new chalanges to deal with................................

[JsMum]

<'> <'> Thanku everyone yes I get a night a week which I know is loads really. I just literally cannot stop crying tonight. Dont know why, I was alright earlier

 

 

Hi elun here is some needed <'> I cant believe you only get one day, thats 6 days your expected to cope, with two children with Autism, I would request another assessment and request more respite and support, especially at home, your overloaded, I know that J isnt as effected as your son but the research and reading about Autism has no daught helped us, the interventions and stratagies have certainly helped us, I certainly wouldnt be here still either if I didnt have a small sence of reasoning to why I have J and I do feel that for me I do feel a sence of drive to be the one to care for J, as hard as it is.

 

Maybe the crying was also really letting go, thats painful and scarey, also excepting the future and not running away from it, many adults with Autism do need supervision and support, but they can still lead a very happy forfillful life, its giving them the best of life with the difficulties they have and giving them tools to learn to be as independant as possible.

 

I wonder if you ever really talk to someone, a councillor may be a good idea for a little bit, you have a lot to deal with, and a break, someone there for you and more support at home could really help you in a time when its just too much to deal with alone.

 

JsMum

[Flora]

Elun, you've got one heck of a lot on your plate. One night a week of respite doesn't sound like nearly enough. You need time to recharge. The relentlessness with no sign of anything changing would be enough to get anyone down. You moan away any time you feel like it; that's what we're here for, and you could never be accused of being self indulgent.

 

Flora <'>

[pearl]

<'> elun <'> so sorry things are so hard

[loobylou2]

<'> Elun,hope you get some more help soon. <'> Don't worry about ranting on here, we're all here to help and sympathise! If you can't say it how it is on here, where can you? Take care of yourself chuck <'>

[oxgirl]

Elun, have you got family or friends nearby to talk to or spend time with who'll listen and support you? It sounds as if you feel very alone with it all at the moment. Have you been to see your GP to talk about how you're feeling, it sounds like you could be depressed, which isn't at all surprising, you've got a lot on your plate. Some things we just can't change, but it could be that you could maybe change how you feel about things with help and support. What about counselling, I know it doesn't take the challenges and the situation away, but sometimes just telling someone about how we're feeling can help.

 

<'> <'> <'>

 

~ Mel ~

[BusyLizzie100]

Crying can be good. It sounds like you needed to let off steam and crying can help to do that. It won't take away the situation, but it can be a release from time to time.

 

How are you today? Keep 'talking', this is a good place to do it.

<'> >< <'> ><

 

Lizzie xx

[lynne]

HI Elun,

 

Just take one day at a time and enjoy your children.

 

No one can fully predict what any child will be when they are adults, even normal children.

 

Our ASD children can surprise us.

 

Sending lots of cuddles.

[bikemad]

<'> <'> <'> <'> I can beleive you only get one nights help a week thats mad!!!!! <'> <'>

[smiley]

<'> >< <'>

[soraya]

Elun you are doing a fantastic job, and you have every right to feel fed up from time to time, you do it because you love your child and have no other choice. Ask your social worker about direct payments then you could employ someone to come in and help. sending lots of <'> <'>

[elun1]

<'> <'> <'> Thankyou so much. I feel really tired today and I have struggled big time at school today. Dont know how good my teaching was! I dont feel so panicky though and my head feels clearer. I'm on a waiting list for counselling - have been waiting for months! Think I feel bad at moment as well as the summer holidays are coming up and although teaching is hard work I love it and it is a kind of respite for me. Gotta go because O and W are both shouting their heads off!

Thankyou <'> <'>

[Cariad]

Elun, I get days of pure helplessness and think why me.. I so know where you are coming from. Sometimes I think is there a god up there testing me and am I winning?

 

<'>

 

Also I got sent to counselling, I tried through the NHS and she was hopeless. In the end I had to pay �60 an hour, I went twice and couldn't afford to anymore. So now I drink a bottle of wine most nights and eat junk.. Maybe I might shift my crutch to working out at the gym

Edited July 7, 2008 by Cariad

[BusyLizzie100]

<'> <'> <'> Thankyou so much. I feel really tired today and I have struggled big time at school today. Dont know how good my teaching was! I dont feel so panicky though and my head feels clearer. I'm on a waiting list for counselling - have been waiting for months! Think I feel bad at moment as well as the summer holidays are coming up and although teaching is hard work I love it and it is a kind of respite for me. Gotta go because O and W are both shouting their heads off!

Thankyou <'> <'>

 

Glad you're feeling a little better today, Elun. Have to say, the summer holidays have got me shaking in my boots too. Sometimes I think 'we'll be fine!' and others I think 'gloom, doom, disaster'. I'd like to say I'm somewhere between the two, but I thinkd the gloom doom one sums me up better! This summer I'm determined to get some help on board, even if it's just getting a friend or two to babysit. I've never asked before, but this summer I WILL!!

 

Lizzie <'>