HOME VISIT FROM CAMHS

[cmuir]

Hi

 

After waiting 1.5 years for an appointment, my son and I visited clinical psychologist (CP) in her consultation room. My son was very unsettled and tried to topple the table over, knocked chairs over, threw toys, etc and wouldn't stay in the room. CP suggested going for a walk. I forewarned her about my son's threats and attempts to run onto road in front of vehicles and advised extreme caution. What happened? Exactly that! CP said she was very uneasy and we hurried back. That was 6 weeks ago.

 

CP visited me at home on Friday and said that my anxiety was the cause of a lot of difficulties! I was fuming and told her that she has a short memory (walk she accompanied us on!). She said I constantly talk about the past - obviously, I said, because so much has happened in recent and long term past and I've given numerous examples of difficulties. Also told her that it was impossible to be at ease especially outside the home when I know what can happen. I was also slatted for keeping my son off school nativity. I had good reason last year and explained that I didn't want my son to be the centre of attention for the wrong reasons. Last year, he was extremely distressed shouting, screaming and just utterly lost. I explained that was the actions of a very distressed child. I explained that I hope with maturity he may in future be able to cope with those situations, but until I'm sure, it ain't happening. I was criticised for that as well. She said that I need to come to terms with my son having AS - what the hell does she think I've been doing for the past 5 years! She also said that I need to ensure my son is socialised. Again, I told her that I do and have been forward thinking and have looked into booking swimming lessons, etc. He has 'friends' round to play (one at a time). Rounded off by asking what practical experience she actually has working with AS children/families. She may have a few letters after her name, but she really hasn't a clue! Also spoke about how some other parents refuse invitations to come round/won't let their kids socialise with my son. Oh, I'm sure that's not the case, she says. Again, I was fuming. I said, of course it is, neighbours don't speak to us, etc. This isn't a figment of my imagination! If was was experienced and in touch, she'd know that that can happen.

 

I'm absolutely furious and can't believe the woman was so stupid. I was forewarned about how useless CAMHS are in Edinburgh, but still hoped that they'd help. Really think I'm back to square one. She made me feel useless. She really hasn't a clue. In addition, my son's social worker (who has been amazing) has advised that she has to move on to another family. She's been with us for just over a year and she's been a godsend. I really feel gutted and alone. Great start to new year!

 

Caroline.

Edited January 8, 2007 by cmuir

[KarenT]

Sounds like you've had a similar CAMHS experience to ours this time last year. Sorry you've had to go through this but you're probably better off without them. They tend to work in a very generalised fashion with children having a wide range of problems - for us they were definitely working on the assumption that he was 'normal but disturbed' in some way, especially as we hadn't a dx at that time.

 

I'm sorry you've been so disappointed after waiting this long for your appointment, butit does sound like you'd manage better on your own.

 

Karen

x

[carrieq]

Hi Caroline,

My only experience of "help" from CAHMS was a parenting course run by one of their nurses and our Inclusion Support Team in East Lothian. It was not aimed at our kids and they couldn't make it relevant. We do see a Consultant Psychiatrist at CAHMS and he is quite good, he does what I want!!!

 

We are going to the Communication clinic on Friday so I am hoping for great things from Dr!!

 

Some people really have no idea, if its not in a book. Your life sounds fairly similar to mine and typical of a family with AS!!

 

Carrie

[pingu]

CP visited me at home on Friday and said that my anxiety was the cause of a lot of difficulties!

 

do you think they all read out of the same textbooks?? this is more or less what they said to me too. i can understand your frustration. Believe me... i really can.....

[chriss]

My experience of Cahms was a very positive one generally but again they told me my anxiety was making things worse. This was true, but I needed proper help to make my own life easier which just wasn't available. It was all very well telling me I needed to be calmer but I would have been calmer if I could get a good night sleep or had help getting a child in meltdown home from school or could just get the school to understand that just because he was well behaved and calm there didn't mean he was ok after school. And it wasn't because I was lousy parent that I couldn't handle him when he came home stressed after school.

 

I was caught in a vicious circle. Because I had so many awful incidents with him in public whenever I took him anywhere I was on edge in case he kicked off again. He would pick up on my anxiety and become anxious himself which would set him off again. We needed practical help to break this chain as we were both at the end of our tethers.

 

One good thing was they taught me cbt to use on myself to help me cope with my own negative thoughts. So if I found myself in a situation were C was kicking off and people were staring I learnt to tell myself it didn't matter what they thought, they were people we would probably never see again and some of them would probably guess he was in meltdown. And if they knew what his problems were they would be sympathetic. That kind of thing helped me a lot personally but I was overly sensitive to the views of strangers in the first place!

 

Don't give up on CAHMS yet as there is so little help available out there. Perhaps you could ask if there is anyone with more experience of ASD you could see, or if you have to see the same woman again insist from the outset that you want the meeting to take a more positive line without any blame being attached to anyone for his behaviour. I think it's outrageous that she was so judgemental of you. Anyone with any real knowledge of Aspergers knows its easy but WRONG to criticize the parents! You know best what social situations your child can tolerate and if you weren't a good parent you wouldn't have contacted Cahms in the first place.

[Bagpuss]

Caroline, I've no experience of CAHMS, so can't offer any advice...but really felt for you reading your post and wanted to offer some support. Take care <'> <'>

[cmuir]

Thanks for all your comments.

 

Robert went back to school today after holidays and it's the first time in a couple of weeks that I've seen a big smile on his little face. Really hope he settles down.

 

Have another home visit scheduled for 26/01 and not looking forward to it. Been asked to keep a diary of behaviour. Can't wait to hear how she's going to explain some behaviour.

 

It's so difficult having an outsider coming who isn't simply asking questions and giving criticism in a constructive way.

 

Absolutely stunned that someone can tell you to do normal things - things that I know my son cannot cope with (at the moment anyhow).

 

Just really concerned about Robert's self injurious behaviour and unpredictabilty. Can't help but wonder what lies ahead. Robert's only 5, but I really think in a couple of years time that other kids will start to notice differences and bully him. I really shouldn't look too far ahead (one day at a time, I guess).

 

Caroline.

[opheila]

Dear C

it never ceases to amaze me how some of these so called professionals behave. I to live in scotland and belive me i really think some of these people have little or no idea what our every day life is like. I sometimes feel they leave you feeling so bad about yourself that is is worth the stress and upset of having anything to do with them. <'> <'>

sending you hugs anyway opheila

Edited January 8, 2007 by opheila

[elun1]

It's absolutely disgraceful how you were made to feel. Of course you are anxious! Dealing with autism makes you anxious at times- how can it not when the safety of your child is at stake i.e. the danger when out walking by roads. I had very similar situation with absolutely dreadful social worker - when I was trying to get respite the first time around the questins were beyond belief. A couple of examples that spring to mind 'Do you love your son, in spite of his difficulties?' 'Has all this affected your relationship with your husband?' 'Have you ever used drugs in the past???' NO grounds at all for these questions but they were asked. My son, then 3 and non-verbal kept trying to hug her (it's a sensory thing!) and she refused to touch him saying 'you have to be so careful these days!!' And this is someone from the Children with Disabilities Team!

I really feel for you

Elun <'> <'> <'>

[Cat]

There are good CAMHS teams and bad I have experience of both. The bad team lead to us being on suicide watch for 48 hours. Have you checked this person out? What are their qualifications and what are their stats never mind yours? Type their name into a search engine and see what come up - or ask other parents. It's quite amazing what you can uncover.

 

Don't let them blame you you are not the problem. If only these people lived in our world for but a day.

 

Cat

[pumpkinpie]

Why dont you put in writing what she said and your anwsers.

It seems very clear she has a poor memory, as she is convienintly forgetting what happened when you went out etc.

I would want to be getting together some evidence to show that she really doesnt get! Whether its cctv lots of examples etc. Ask her what she would do in this situation.

I wonder what would happen if you asked to tape record your next meeting , so you can remeber what she said?

 

I do think as parents we have to go with our instincts, I think the point about doing some research on her and whats available in the area is sound - its really parent power that has helped me in the past and if Id waited for the professional to act Id have gone under years ago!

[pumpkinpie]

Sorry meant to add, dont mean necessarily to send the letter but sometimes it helps to have recorded what has happeneed for your own sanity and to help future plans

[kirstie]

<'> oh Caroline,

I'm sorry you're visit was such a let down. The help and support i got was from the Communication clinic and most definatley not the CAHMS. I felt patronised and like a right plank when i went to a meeting a couple of years ago now.

And for the record, i too kept Lewis out of Christmas concerts when he was at Nursery because there was no way he was going to cope (had tried before) and didn;t want him being the centre of attention for the wrong reasons either, and the Nursery (probably amid much sighing with relief and mopping their brows) agreed that it would've been too much for him to deal with. WE DO KNOW OUR KIDS BEST and when they finally get that into their thick patronising skulls the better. Some, but not all, of these professionals really are a bunch of gits who make you feel so inadequate.

However ona lighter note, it will get easier for Robert given time and support, re the Christmas plays and parties. I know a lot of our kids will always hate these things but from our experience Lewis who is now 7 is so much better placed to cope with these social situations and can block out the noises/brushing past and bumping into him and general confusion that comes with a social and pretty much unstructured situation (parties). I have put this down to the massive supports he's had and his growing maturity. I never thought we'd see the day when he would actually enjoy doing these things either so keep fighting and again, contact his Paed, we both know she's great and will do her best to help.

[cmuir]

Thanks Kirstie

 

Next appointment with CAMHS/home visit is 26/02. I've been asked to keep a diary. I've had a good long think and at the end of the day, diary is irrelevant because she'll make her mind up - she needs to see for herself. Frankly, don't think she has the skills to handle the situations that we do daily. It's a new year and I'm not prepared to put up with people that hinder rather than help. Just a bit concerned that Consultant will see me as being uncooperative (even with good reason).

 

C.

[loulou]

Hi Caroline,

 

Sorry to hear you're having a bad time. For what it's worth, we went to see a CP after 2 years wait and Kai went crazy after being kept waiting in a room for 35 minutes. He threw a chair, hit me and tried to climb out of the window. They then wrote a report about my inability to manage him , not mentioning that he'd been shut in a room for 35 minutes and then two strangers walked in with clipboards .

 

They came to our house last month and told me that i have to tell him that physical violence is not acceptable. Like i haven't tried telling him that .

 

I do wonder what experience these peolpe have sometimes. But after all, they have not walked in our shoes nor lived a day in our lives, so how can they REALLY know what life is like? They're coming back on 23 jan and i'm NOT looking forward to it at all.

 

All the best <'> <'> , I'll be thinking of you.

 

Loulou xx

[noogsy]

hi im not sure where you are.but im assuming its nearish me... is there any chance of you getting refered to falkirk...the manor, brown street,falkirk...we go to brown street in falkirk and they are wonderfull.we see a asd specialist and a adhd specialist.its through them that we got a aspergers teacher for my babe...i think they have a website as part of the nhs if you want to know more contact me....i have tried to give you as much information about the website as i can sorry if the link doesnt work im hopeless with my technology....we see gordon brown and clive greenshaw........love noogsy

www.nhsforthvalley.com/home/Services/A-Z/CAMH/CAMH_Intro.html

Edited January 13, 2007 by noogsy