advice in chanelling bottled up intense anger positively

[florrie]

i'm visiting doctor tommorrow with K about my difficulties and k is visiting J doctor with j on wednesdayand things have gone so badly wrong for so long and my medical notes a so inaccurate that i want to try and make the picture clearer, but i tend to ramble and go off on tangents and we never get anywhere mind you k has been on my behalf and he never gets anywhere either but he does do better than me.

 

I also have so much anger and also intense fear which has been repressed for so long it makes me really feel mentally unwell, and extremely depressed and a lot of it is felt about all these professionals that have been involved with my son and the continual misdx and patronising comments when every single person couldn't seem to get a grip with what they were being told until he was dx with semantic pragmatic disorder and a wonderful paediatrician knew exactly what it was and was extremly sympathetic she was even going to go into his school and sort everything out, but she left a year later when we needed it.

 

I'm going off on tangent again ok back to the point I wondered whether anyone had some positive advice on being able to manage this anger because i can barely contain it and i know if iexpress it will come off badly for me you can't direct anger at someone and expect help anyway my new doctor is quite pleasAnt if not having any knowledge as usual of asd. it is also important that they don't think that all my problems are caused by jakes which is probably what will happen because they can't seem to get their round anything complex,even though I can explain but it will be rambly because i have difficulties independent of Jakes but Jakes obviously exacerbate mine and vice versa. I had lb tests done which i took of having i had no idea what they would say but Iknew they could dx hyperlexia and therefore i could use that to anyone who dx asd, and I had the most extreme profile of anyone they had ever had bearing in mind all the children already had dx of asd but there was one adult with similar profile to mine and he was professor of psychiatry, how interesting is that, thi s is all perfectly true by the way. When I realised i had hyperlexia about 10 years ago it was considered an asd but now there is some controversy about whether it is or not some people think it is and some don't and some say it can exist on its own and some say it can't.

 

I did subsequently manage to get dx of asd privately but she had no understanding at all and was really patronising which made me feel worse, and I was also was told by a professor when i volunteered for research that they did not think I was on the spectrum but that i had something else but upon completion of there tests that i did because i was already there, i received a letter saying i did indeed fall into the spectrum and my conclusions had been correct. I have also had the ados test and found to be on asd via that test and yet I still have to put up with people telling me i seem fine, can't see what my communicatioin problemis etc I have probably had more in depth testing than anyone and dx 3 times it can't be wrong surely, but I still doubrt i'm on the spectrum and don't now feel the dx has benfited me because now i think people think i'm a hypochondriac and the medics definetly do. and I can't stop worrying about what people think it is doing my head in. I didn't invent the tests or the criteria and I though t I was taking responsibility for the situation by trying to address my probs so that i woudl have been better able to help j but no one seems to see that, I think they just think i'm self obsessed and selfish, and absorbed in my stuff and to a point that is true because i can't help it is part of how i process but I still started this to help me help j. I also have auditory processing probs which means i hear but i don't process until later so most of my responses are rote and i'm obviously so good at it no one can tell, I can't stop doing it I've tried but I can't it is automatic I suppose it is how I learnt to get by and it is always passive and ends conversation dead usually

 

My other areas of interest now are the brain and the areas affected and how to improve functioning but thats another topic.

 

i don't really know what to do about this anger and Iknow I can't express it and that is making me feel unwell and I don't feel i can tell the medics it is all the professionals and their lack of understanding incompetence and sheer inertia and inability to even find out what it is, to feel this I know they probably can't help not understanding any more than i can help the problems i've got but they continue to treat it in the same prejudiced way and it nearly drives me mad eg will not recognise the level of difficulties i have had, they still think i just think i've got asd, because i saw it on my notes but as I said didn't invent the tests or criteria, they just appear to be a law unto themselves and it makes me angry.

 

I know Jake is the most important thing but the whole scenario has made me angry fearful and depressed, K feels i need to focus on my problems in this appt and J problems with his doctor on wednes with hisdoctor seperately otherwise mine will be brushed under the car[et, but i know j probs will be brought in but k is worried they will overshadow and they will make the mistake i'm only depressed because of j i'm depressed because of the continuous traumatic experiences of which they have been a part of, and each one leaves me feeling even less able to cope than before and i don't know why

 

Back to the point has anyone any advice on how to direct this intense anger in apositive way, i know a lot of you will understand why feel so angry, but obviously they won't understand.

[sue45]

Hi Florrie,

 

I'm sorry I don't really know what to say to help with the anger - I just really hope you receive the help you need and are listened to. Have you thought about writing down your main concerns in a list? It's so easy to get sidetracked when you only have so much time to get across your points in an appointment. I'm sorry, that's all I can think of.

 

The best of luck with this tomorrow, and I hope J gets somewhere on wednesday too.

 

Sue

 

xx

[florrie]

Thank you, actually funnily enough just writing that out seemed to help for the first time, thats a bit strange, I hope it lasts.

[Kazzen161]

I also am full of anger - years worth.

 

I use it to help me fight for what is right for my child.

 

Sometimes I use it to campaign for change.

 

I share it with people on here and messages boards for parents of people with SEN, which helps, cos they can understand how I feel.

 

I have at various times seen a cousellor - mostly just as someone totally impartial to offload to.

 

Throwing glass bottles into the recycling bin is fun! Or buy a punch bag.

 

 

I think if you analyse what you are angry about, some of it is in the past and there is nothing you can do about it - talk or write about it, and then try to let it go.

 

Some of it, there is still something you can do to make it better - use your anger in a constructive way to fight for that.

 

Try to make sure you have relaxation time (music, reading, dancing - whatever is your thing), and sometimes you find that what was important one day, does not seem so important the next day.

 

Karen

[gromit]

Hi Florrie, sorry about how your feeling with the anger and everything. If it helps to write it down maybe you try it more often....better out than in my mum would say (or is that my hubs talking about his flatulence )

 

Get real angry with the world too sometimes and find that some strenuous exercise helps me release some of that pent up aggression and leaves me more able to focus on what I can do about it. I dont have any personal dx but in any sort of confrontation get flustered and always seem to go off on a tangent. so I find that making a list of things to discuss at meetings helps me keep on track.

 

Best of luck

[nellie]

Florrie, <'>

 

Everything you say makes sense and it may surprise you know that lots of parents feel this anger and outrage whether they are N/T or on the spectrum. The injustice of it all makes us desperate and neurotic, the professionals don't realise that it's them that make us like this. You have the added difficulties of hyperlexia and ASD which must make it incredibly difficult for you.

 

I can only tell you how I got over my anger and rage at the injustices suffered, and there were many. When my son was eventually diagnosed with autism at 19 and received the help and support he needed I was left feeling angry and overwhelmed by the years of injustice. It took me over two years to accept things and move on.

 

Forgiving the people involved was the only way I could come to terms with everything, it wasn't easy though. I found I could forgive when I realised that the professionals involved didn't have the understanding I thought they had . There are no true experts. The professionals who know best are people who make no assumptions, who are always prepared to listen and learn. We had suffered at the hands of people who knew no better, who prejudged the situation, who didn't properly evaluate, who thought they knew best. With hindsight I don't think they deliberately set out to make our lives hell, they knew no better.

 

When my younger son started to have problems five years ago and we began to suspect he had AS, I was a bit more realistic and understood not to rely on professionals to understand or give us help or support. I know the system better now, I know my rights, have more confidence and have lower expectations of the professionals and services available.

 

Florrie, I hope your appointment with the GP is a success and you can make some progress.

 

It may help if you try to explain your information processing difficulties to the GP by giving it to her in writing before the appointment or before she starts the consultation. Write the points you want to make and the help you would like and leave a copy with the GP. Then you will at least have had your say if you find communication difficult during the consultation. If you feel the appointment is not going well or you're feeling overloaded you can always make another appointment.

 

You could even give the doctor a copy of your post on this topic, it explains things so well.

 

I know Jake is the most important thing

 

Florrie, you are important too. <'>

 

Nellie <'> <'>

[florrie]

Thanks for all the advice, nellie iknow you must have been through very difficult times it must have been terrible for your son to get to be 19, and you must have felt what a lot of wasted years and i really relate to that, although my son was dx at 10 it was all the other professionals who didn't get it and made life so difficult and i feel so much of it was preventable, which is what makes me feel so angry and that i've had to spend my entire life devoted to it. I can't help analyzing in the detail, I've always done that with things the only other alternative is to withdraw completely which was the only thing | could do at one stage, for my own sanity, i can only do one or the other there is no middle., although i will try to find a middle path

 

I really feel so terrible as well for other parents on here that are struggling to get their child needs recognised and ifeel for the child and wonder they will end up like jake as a result of people failing to get it, and it makes me want to cry and scream with frustration for them.

 

anyway i found all the advice helpful thank you, i will try not to blame them too much but they did fabricate my medical records for there own benefit , and my dwelling on that is obviously not helpful but not fully controllable

[nellie]

Oh Florrie, <'>

 

Yes, I managed to get support and move on but I didn't have the problems you have. I hope I didn't come across as a know all. I wish I did know it all!

 

You will get there and hopefully you will get the understanding and support you need and hopefully someone will acknowledge the injustices you have suffered.

 

I still scream with frustration at the lack of diagnosis and support, it is getting better but far from perfect!!

Sometimes it's impossible to control our anger and emotions.

 

Take care,

 

Nellie xx

[florrie]

Thank you nellie, your advice is really helpful and appreciated but i'm sure it is not true that you do not have the level of difficulties i have after all you have a husband with asperger too, who is there for you? at least i have ken to help me but honestly i would not have achieved what i have with assessments etc without him helping me, and j and i know i wuld not have achieved anything for jake without that m, this is what is really alraming.

[nellie]

Hi Florrie,

 

Yes, it's true to say having an AS husband made life difficult when my children were young. I thought he was refusing to speak at meetings but I now realise he was unable to speak. He has gone from strength to strength since his diagnosis. He's my hero.

 

Nellie xx

[jen]

Hi florrie,

 

Kick boxing or a marshall art where you are hitting an object gets rid of the anger.

 

Jen

[call me jaded]

There was an article in the BMJ with a list of self help books that have been selected for providing help whislt doing the least amount of damage.

 

There are a couple of anger management ones on there. I have no idea if they are any good or appropriate but it is somewhere to start. Actually you have already started because you can identify the problem. Here's the list.

 

http://bmj.bmjjournals.com/cgi/eletters/32...02/1285-b#33650

 

Hope things go OK. I think you should print out what you have said here because it explains exactly how you feel.

 

Sending lots and lots of positive vibes <'> <'> <'>

[Kathryn]

Florrie,

 

I think you've expressed yourself very well in this thread. Very best wishes for the appointment tomorrow.

 

<'>

 

K x

[florrie]

Thanks everyone, I will examine all those options in more detail, i remember ken telling me along time to punch a boxing bag ten times a day, i did that for a bit, i have got an anger manaement book, i didn't find it helpful at the time but i think i will revisit it sometimes you don't find things helpful but you find something helpful in them later, that happens a lot with me, as i make all these random connections and then something suddenly makes sense. probably lots of people have that actuallly.

 

nellie i really relate to your husband being unable to speak and you not understanding why, it was probably a relief when you understood why, when i realised i may be asd ihad to revaluate everything that had occured in the past, and put a different take on everything, some of it was a relief.

 

I'm not quite sure why i feel so strongly that they need to understand, the fact they go into defense mode really annoys me whereas if they just we are sorry this has caused you so much distress, and we will do what we can although the nhs may not be able to meet all these needs i'd be fine and grateful, they can't see something so simple

[Guest hallyscomet]

Hi Florrie

 

I am a bit late to this thread, but sending you some of these <'> <'> <'>

 

Regards

Hailey

[sue45]

Good luck today Florrie.

 

Sue

 

xx

[florrie]

I've been to gp and it was quite positive, didn't mention j to much but then she Isn't J gp, but she seemed to take situation seriously and was sympathetic, which for me makes a difference having been blamed for so long. Will report back after k has seen j gp.

 

Thanks for all positive messages it really has made a difference and I don't feel so angry and alone

[Kathryn]

Hi Florrie,

 

<'>

 

It's good to hear the appointment went well, and that you were listened to. Hopefully this GP will be able to build a better relationship with you than the last one did.

 

K

[big mamma]

Florrie,

 

Hope things start getting better for you soon <'>

[JsMum]

Hi

 

Repressed anger will come out in the end, and can display itself in all kinds of ways like depression and anxiety so i recommend a course that you attend as doing a course is fare more interesting than a book and you get the support too.

 

I recommend some relaxation and some you time, a massage a haircut a day out shopping and a coffee with a friend, then when you have had that the release will come a bit more and I suggest going into a remote place and screaming, shouting and get it out of your system.

 

I am joining the gym and going to go swimming, I have worked really hard understanding emotions and feelings so I let go as and when, if i cry i go with it and then feel better afterwards.

 

 

Support is another big one and you have to have support, so some councilling might help or a hobby like pottery or drawing to get together with other people, most adult education have these now.

 

Anger is normal and natural, learning to deal with it positively really makes a massive difference on your life.

 

I am reading a great book at the moment, HERE I AM byMark Linden O Meara.

 

Hope you get something sorted and I am offering a freindly hug.

 

JsMum

[nellie]

Florrie,

 

I'm pleased your appointment went well. Please keep us posted.

 

Nellie <'>

[sue45]

Hi Florrie,

 

I hope all goes well with your j's appt today.

 

Let us know how it goes. Sending some <'> <'> <'>

 

(and thanks for info on DLA this morning)

 

All the best

 

Sue

 

xx