Its so frustrating....

[Clare63]

I am so frustrated, my DS is getting worse and worse, his anxiety is so debilitating and yet again we've been off school all week. He can't sleep for worrying and is up half the night, its exhausting for us all, because of lack of sleep he is less able to cope. He says he is scared all the time, has trouble completing day to day tasks such as getting washed and dressed. He is miserable and seems depressed.

 

I took him to see our GP on Tuesday who was clearly shocked that we were not getting any support from CAMHS and questioned why I had come to him rather than contact the hospital (I thought that was what I supposed to do). I told him how low DS is and the sleeping problems, I also explained how I was seeing another GP fro depression and counselling. I enquired about getting metalonin for DS to help him sleep from research I have done it also sounds like it can take the edge of anxiety. The GP said he would not prescribe anything for him but would contact the hospital as a priority. He told me to phone CAMHS and tell them this and ask for an appointment. CAMHS told me our case was closed ..... thats great there you go your son has AS bye bye... I explained our GP was referring us and they asked for that to be faxed. Two days have passed and I've heard nothing.

 

Just come off phone from CAMHS who said yes we can offer us an appointment on the 5th June !!!!!!!! how the hell can we wait this long, I went mad and quoted from the Psychiatrist reports which said any signs of withdrawl or increased anxiety must be taken as a warning, she explained that my DH, myself and school should keep an eye on this and should seek furher support.

 

I have now left it that the duty worker will look at our case and phone me back to see if it could be treated more urgently......she's just rung back, she is going to ask the psychiatrist who dx us if she would see DS without another assessment (another assessment why ????) otherwise she could offer us an assessment at another hospital for the 19th of April. So now awaiting another call.

 

Sorry to go on but I am so frustrated, especially when I asked why our case has been closed and she said well there's nothing we can really do for aspergers. So I guess I have just got to get on with it.

 

Clare x

[oxgirl]

Oh, Clare, so sorry. <'> <'>

 

I feel exactly the same as you, I just want someone to DO something, but they shrug their shoulders as if to say there's nothing we can do and expect us to be happy with it. I've had professionals look at me as if I'm mad when I tell them I'm upset because my lad hasn't got any friends. It's as if they're thinking, well, of course he hasn't got any friends, what do you expect, he's AS you stupid woman, live with it! But nobody tells you how to live with it and how not to feel awful about it, do they!

 

Wish I could help more. <'> <'> <'>

 

~ Mel ~

[Cat]

There is nothing really that they can do for Aspergers? Does this mean that the team that you are seeing does not have a specialism in ASD? This is an important question that needs answering because if you are seeing proffesionals who only 'think' they know about ASD they can actually make things worse. Sorry you probably do not want to hear that. If it's just the duty worker who does not know how many beans make five then they need changing.

 

If the call does not produce what you require this is what I would suggest - it tends to work but you have to be brave enough to do this. Turn up at the place that you need to be seen and tell them that you are not going to move until someone sees you. You will have to take your son and this usually applies more weight for them to act. The last time one of our use parents did this at CAMHS she got an appointment for the next day. Doing this can work. It let's them see that you are desperate and that something needs to be done.

 

Cat

[curra]

Clare,

 

What an ordeal it is to get an app with Cahms! I really feel for you as I went through a similar situation with my DS 2 years ago. It usually takes 3 months waiting to get the first appt but your son needs it as a matter of urgency. It seems that the duty worker doesn't understand what the app is for. Is she aware that your son is depressed and doesn't need another assessment? They also told me at first that there's nothing for AS as if I was asking them to cure him of his ASD. I found out that it's necessary to emphasise that he may be AS but he also needs help with depression, anger and anxiety. Maybe you could try aking the paediatrician for Melatonin in the meantime. I got the prescription from him.

The 19th of April is not too far, I hope that you can get that appointment.

 

Curra XX

[Clare63]

Oh, Clare, so sorry. <'> <'>

 

I feel exactly the same as you, I just want someone to DO something, but they shrug their shoulders as if to say there's nothing we can do and expect us to be happy with it. I've had professionals look at me as if I'm mad when I tell them I'm upset because my lad hasn't got any friends. It's as if they're thinking, well, of course he hasn't got any friends, what do you expect, he's AS you stupid woman, live with it! But nobody tells you how to live with it and how not to feel awful about it, do they!

 

Wish I could help more. <'> <'> <'>

 

~ Mel ~

 

Mel, that's exactly how I feel, yeah he might be 12 and a big lad but he's still my baby and yeah he does have AS but why should these kids have to suffer and like you say noone tells you "how to live with it and how not to feel so awful"

 

Thanks for your support its good to know someone is lsitening to me.

 

Clare x <'> <'> <'>

[Clare63]

There is nothing really that they can do for Aspergers? Does this mean that the team that you are seeing does not have a specialism in ASD? This is an important question that needs answering because if you are seeing proffesionals who only 'think' they know about ASD they can actually make things worse. Sorry you probably do not want to hear that. If it's just the duty worker who does not know how many beans make five then they need changing.

 

If the call does not produce what you require this is what I would suggest - it tends to work but you have to be brave enough to do this. Turn up at the place that you need to be seen and tell them that you are not going to move until someone sees you. You will have to take your son and this usually applies more weight for them to act. The last time one of our use parents did this at CAMHS she got an appointment for the next day. Doing this can work. It let's them see that you are desperate and that something needs to be done.

 

Cat

Cat, I don't think the DW had a clue, even when I was sobbing down the phone that I didn't know what to do. My Mum also suggesting turning up and saying I not leaving till I can see someone, would love to do that but at the moment just don't have the guts. Have gone with the appointment of the 19th, she told me to keep telling my son how well he has done about things and encourage him to go to school what the bl**dy hell does she thi9nk I have been doing for the past months, years, days, weeks. I expect and hope I'll pull my socks up in bit and get ready to fight again, but I am not too well myself which seems to make things doubly worse.

Thanks for the advice musch appreciated.

Clare x <'>

[Clare63]

Clare,

 

What an ordeal it is to get an app with Cahms! I really feel for you as I went through a similar situation with my DS 2 years ago. It usually takes 3 months waiting to get the first appt but your son needs it as a matter of urgency. It seems that the duty worker doesn't understand what the app is for. Is she aware that your son is depressed and doesn't need another assessment? They also told me at first that there's nothing for AS as if I was asking them to cure him of his ASD. I found out that it's necessary to emphasise that he may be AS but he also needs help with depression, anger and anxiety. Maybe you could try aking the paediatrician for Melatonin in the meantime. I got the prescription from him.

The 19th of April is not too far, I hope that you can get that appointment.

 

Curra XX

 

Curra, thank you for your kind reply especially as I know you are going through the mill at the moment. The GP would not supply melatonin and the women at CAMHS said they don't like to prescribe it either. Basically in the mean time I have got to remain bubby and positive and jolly my son along....yeah easier said than done. Thanks for your support and I hope things improve fr you too.

Clarex <'> <'> <'>

Edited March 22, 2007 by Clare63

[barefoot wend]

Clare

 

I recently wrote to my MP about the difficulty in getting an appointment - when I told CAMHS they magically found an appt. for the next week.

 

My MP was very interested in helping - try yours. You can find contact your MP via e-mail if you Google 'WriteToThem'.

 

Barefoot

[Clare63]

Clare

 

I recently wrote to my MP about the difficulty in getting an appointment - when I told CAMHS they magically found an appt. for the next week.

 

My MP was very interested in helping - try yours. You can find contact your MP via e-mail if you Google 'WriteToThem'.

 

Barefoot

 

Thanks for that Barefoot, funnily I had a letter from my MP the other day re a petition I signed, so I ahve all his details, but be worth giving it a go.

Clare x

[Deedee]

Oh Clare I know how you feel hun (wouldn't be surprised if we weren't under the same Camhs as I'm in Surrey!)We were diagnosed and dumped too!!It's a very scary feeling to be told then just left on your own to deal with it..There is a NAS group in the area they meet too far away from me but might be worth you taking a look? We also had to seek a rereferral and its taken 6 months to get here for us and we'll probably only be told what we already know anyway!! Our CAMHS has not offered us any therapy or help at all,we just go, tell them our troubles they say,mm yes but you already know what you need to do and are doing it and thats about it I've since heard from another parent her son has music therapy,aba etc etc there I hope the appointment for the other hospital comes through for you although April is still a heck of a long wait when you're both so stressed...I would definately involve the MP too.We recently had cause to ask ours for help regarding a blue badge and he was wonderful,even had a meeting with the sec of state for transport over it That man kicks butt

[Clare63]

Oh Clare I know how you feel hun (wouldn't be surprised if we weren't under the same Camhs as I'm in Surrey!)We were diagnosed and dumped too!!It's a very scary feeling to be told then just left on your own to deal with it..There is a NAS group in the area they meet too far away from me but might be worth you taking a look? We also had to seek a rereferral and its taken 6 months to get here for us and we'll probably only be told what we already know anyway!! Our CAMHS has not offered us any therapy or help at all,we just go, tell them our troubles they say,mm yes but you already know what you need to do and are doing it and thats about it I've since heard from another parent her son has music therapy,aba etc etc there I hope the appointment for the other hospital comes through for you although April is still a heck of a long wait when you're both so stressed...I would definately involve the MP too.We recently had cause to ask ours for help regarding a blue badge and he was wonderful,even had a meeting with the sec of state for transport over it That man kicks butt

 

Thanks Deedee, bet it is the same CAMHS ! unless they are all the same which is highly likely LOL

Do you know which town the NAS group is ?

Have told them I'll have the April appointment so guess will muddle through till then. Tomorrow is another day !!!!!

Clare x

[Deedee]

http://www.mugsy.org/ heres the site with details of where they meet its a bit far for me to go and I have to be 'on call' for 2 of the boys...It seems to be more for woking, guildford ,redhill sort of area?? I also use the Princess royals carers centre as a lifeline,they phone me every so often just to check I'm sane still..which is debatable most of the time!!They put me in touch with SCILL who sorted out our direct payments for respite.Scill are invaluable for all sorts of things if its close enough to you.Contact a family are usually helpful but our one has now lost their funding so not sure if they are able to help with anything at present..shame as they organise a lot of things round here.

[Clare63]

Deedee,

Thanks ever so much for the info, I am Woking way.

Sorry to hear about loss of funding as you say its a shame as they organise stuf round your way.

Clare x

[butterfingersbimbo]

what a nightmare, i do really feel for you its so hard when your child is in a state like this, and with you being poorly it just makes everything so exhausting <'>

 

would you be able to go and see them at short notice if they had a cancellation? it might be worth telling them if you can.....

[Clare63]

Thanks BFB, that's an idea I will call them in the morning and say I'll take any cancellations I could be there in about `15 minutes.

Clare x