back - dropped out for a while -

[Clarkie]

HI

Edited March 17, 2006 by Clarkie

[nellie]

Clarkie <'> <'>

 

It's great to see you back on the forum, I have been wondering how things were, it couldn't have been an easy decision to post again. I'm sorry things didn't work out as planned and the family are having such a difficult time. Where to go from here?

 

I think it might be the case that he needs a small setting with heaps of understanding and respect with good psychiatric care.

 

If your local authority can look at funding a specialist placement, not a school but a residential placement in a small ASD specialist setting with education provided, then maybe that could be the way forward. If you can find the right placement you could put pressure on the authorities to fund it. There are places in the country who provide ASD specialist therapeutic placements.

 

Sorry but I can't think of anything else to suggest. I understand what you're going through, try to stay strong.

 

nellie <'> <'>

[phasmid]

Oh Clarkie, I'm horrified. Talk about being let down when you needed it most! I pray things get sorted out for you and R as soon as possible (hubby too - I know you may not feel that way right now from your post). Take care of yourself.

 

<'> <'> <'>

 

Phas

[neda]

Hi Clarkie

 

I'm quite new to the forum so don't feel I can offer you advice but I just wanted to send you some of these <'> <'> I really hope things will improve for you.

[kirstie]

Hi Clarkie,

I am so angry for you! It's sods law when you need the help the most where were these people??? Grrrr. It's a hard enough battle at the best of times but you have had a total nightmare. I hope R can get the help he deserves and you get back on track with your hubby, No wonder yuou didn't feel like posting. You must feel like you've run out of steam. <'> <'>

I so hope your son feels better soon, please let us know how you get on. <'>

I'll be thinking of you,

Take care,

Kirstie.

[call me jaded]

Wow that's tough on you. Stay strong and I hope you achieve some peace soon.

[bid]

Oh Clarkie ,

 

You know you have all been in my thoughts

 

Bid <'> <'> <'>

[ceecee]

Clarkie

 

I dont have any children on the spectrum so I don't feel i am in any position to offer advice, apart from keep fighting to get what your child needs.Just sending some of these <'> <'> <'> <'>

[pumpkinpie]

So sorry you are having to go through all this. Have you complained to anyone about the shitty service you got from the police, socil services etc. they should be ashamed of themselves!!! Keep strong and dont let them get away with it do you have a carers resourse centre by you who caould complain on your behalf

Keep strong and remember were are thinking about you!

[asereht]

Clarkie so sorry to hear things are not too good for you at the moment.

 

 

Thinking of you <'> <'> .

 

 

Theresa

[Kathryn]

Hi Clarkie,

 

Good to see you back on here. <'> <'> <'>

 

You will get throught this.

 

Stay strong,

 

K xx

[Suze]

Hi Clarkie <'> ..............how you have coped I don,t know,how much worse must it get before authorities and those who can access special services do something to help you.Your in my thoughts , <'> ,I pray things can get sorted soon.Suzex.

[alibaly]

If you feel the situation at home would be better without your husband being there then change the locks. Your son will only ever have one mother.

 

I would have liked to add some hugs but I can't find the smilies, sorry.

Edited January 9, 2006 by alibaly

[reuby2]

Hi, with all due respect alibaly I don't think that is the answer. We all know what the pressures and strains are on our marriage and relationships and it takes it's toll on everyone. Turning against each other is very easy to do but also very sad.We need each other and there are other steps to take. All the family need support and understanding and it sounds as though at the moment that isn't happening.

 

Clarkie, i really hope things get a bit better soon and that you get the support you all need.

<'> <'> <'> <'> <'>

[LKS]

Hi Clarkie. You have all been treated terribly. I think you were right not to agree to your son being admitted to a psychiatric ward. My husband was admitted to one when he had a nervous breakdown and this is not the place for a young person with Autism! You must be so overwhelmed with it all and just when you need the support it's not there, not from anybody. The emphasis seems to be on you to continue to fight and find the best help you can get for your son. Wish I could offer more practical advice. <'>

[alibaly]

reuby2,

 

I responded to clarkie saying, " she thinks it would better if her hubbie wasn't at home just now," she must have her reasons for that. This is not about turning against each other, it is perhaps a way for her to see if her sons situation would improve under different circumstances.

 

And yes we do need each other, but at what cost?

 

Sometimes things have to be completely taken apart before they can be rebuilt and fixed

[hev]

hello clarkie,glad you are back and sad things are tough for you right now,the pressures on family life are awful,im sorry you are all going through this,im not good at giving advice but only you know if you and your husband can sort things out,whatever you decide keep posting and we are here for you,take care love hev

[annie]

Clarkie,

 

It's frightening that the people who are supposed to be there to help, aren't. I can understand you feeling totally drained and might not feel up to it but, it might be worth a call to your MP about the lack of support.

 

Annie

<'> <'>

[witsend]

Just wanted to send you these <'> <'> sorry you're all having such a cr*p time. Really hope somryhing positive happens for you soon.

Luv Witsend.

[Guest hallyscomet]

Hi Clarkie,

 

I know a friend had a very similar situation with there son it turned out that he had been given a wrong diagnosis and for years they were treating him for Schizoprenia and he flatly would refuse to take his medication, obviously this boy knew these medications were not working for him. To cut a long story short after reassessment with a doctor more qualified it turned out the boy didnt have Schizophrenia at all but what he did have was Bi Polar disorder, the things you are saying sound very similar. since the boy has been placed on the right medication, he has improved greatly.

 

Do you think you need to get a second opinion. Forgive me I am not up with what you have done to date, but remember that lady on the forum that everyone talked about, I can't think of her name but she is and adult with Autism, she was wronglfully diagnosed with Schizophrenia also, and turned out she had Autism.

 

Its not the first time a wrong diagnosis has occured, and by what you are describing in your child running away and self harm, sounds like he is being misunderstood, like the above. My daughter had a friend who would self harm, has your child a counsellor they trust that they could open up to and talk to.

 

My prayers are with you whatever you do. You will get through this, <'> <'> <'> <'>

 

Regards

Hailey

[mossgrove]

Welcome back.

 

I am sorry things are so tough for you right now.

 

I agree with Annies suggestion about your MP.

 

 

Simon

[lynyona]

<'> <'> <'> thats all i can send you hope things sort themselves out <'> <'> <'>

[Guest hallyscomet]

Hi Clarkie,

 

I was reading Mother in needs post and I posted a reply and it twigged my mind as I had blocked this out of my memory. I had gone through something very similar to you and Mother in Need so I have copied over what I typed for Mother in Need, I believe you will find some comparisons with what happened to my boy, read his story please..... <'> <'> I think this is the same I will highlight the post I typed to Mother in Need in blue as I beleive our stories are the same.

 

Here it is

 

our prayers are with you that things get better real soon. You deserve it, What meds does your child take mine takes Risperdal and Concerta and anxiety tabs called Luvox he is on the severe scale, he is a different person on these meds he used to be like your son. He thanked me when I put him on different meds, as he said he couldn't integrate without them, talking to peers was virtually impossible, he just couldn't get his head mind around it. Combination of Concerta & Risperdal gave him the mental energy to have a conversation. I had tears in my eyes when he was 5 because of how medication gave him the ability to talk again.

 

At the age of twelve everything went off the rails again, this is common, my son was old enough when he reached puberty to tell me how the change of medication changed him again, once he was on the right meds and dose, that is, read on to see how hard it was for him.

It was such a struggle I later found out as his brain wouldn't process words, so he would get so frustrated he would resort to violence, he punched one kid in the face for teasing him. Meltdowns galore. Poor guy once he was able to tell me how it was, and it wasn't until he was on the right meds was he able to sit down and tell me, I love him so much, and felt so bad for him. Literally, my daughter and I were scared... I remember so clearly my son became very violent and aggressive a real short fuse, I remember feeling sick to the stomach, thinking his medications are not working, what am I going to do now. When I rang his Paediatrician and told him spoke with him directly on the phone, he made time to see me and my son that day, he said if ever I had a problem with behaviour change to call him immediately and he will see him asap, well, truly I was relieved as because I feared that if something seriously didn't happen soon I feared I would lose my beautiful boy to an institution or I would end up in one and my daughter. We ended up doing a school change as the school he was at just put him in the too hard basket, we ewre paying $4,000 a year and they were ###### wouldn't take any responsiblity in giving his medication. I remember it was really hard going. Once we change to the Public system he again thanked me as the Librarian took full responsiblity for his medication and if he didnt come to get it she would ring the class room he was in as she had a copy of this timetable. My boy said the children were much nicer and more understanding.

 

I read your story and Clarkie's and I can tell you I know exactly what it is like to walk in your shoes. I say to both of you, if you don't feel you are getting the right answers go to the top in search of a Paediatrician that specialises in children like ours. My sons Paediatrician is worth his weight in gold, he really cares. He is my sons rock, especially when my son's future has clouded over all black he always makes the sun shine for us and my boy.

 

My prayers are with you that you and Clarkie get the help you deserve.

 

 

 

Love Hailey hug.gif hug.gif hug.gif hug.gif

 

This post has been edited by hallyscomet: Today, 11:36 PM

Edited January 11, 2006 by hallyscomet

[Guest hallyscomet]

Hi Clarkie

 

I found that site where the lady Mugsy was miss diagnosed, you can read about it here.

 

Hope I am not overloading you this is the actual website http://mugsy.org/wendy/index2.htm

 

 

 

 

You can read here what other forum members had to say about her.

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=4245

 

Regards

Hailey <'>

Edited January 11, 2006 by nellie