Feeling disheartened

[JeanneA]

Hi guys, Glen's been home this weekend and has just been picked up by his dad and he will be there until he's picked up by the care home staff to go back later today.

 

Sadly this weekend stay hasn't gone well at all so different from Glen's last home stay when he was so smiley, relaxed, happy, no aggression/anxiety. This time Glen was clearly anxious/agitated, very impatient. He slapped himself with extreme force in his face and eye lots of times.I tried to stop him but when I did he hit out at me. I realise that he has to hit himself until he's 'finished' if you can understand what I mean. With Glen there's a start and a finish to whatever he does. It is so horrible to watch though, very upsetting. When Glen has finished hitting himself he just carries on as if nothing has happened.

 

I don't know why he was so different this time to the last time he was here, but that's Glen's unpredictability for you as I'm sure lots of you will relate to.

 

I guess I am always looking for improvements when I see Glen, perhaps I am expecting too much? I just hope that this self harming will stop, perhaps one day it will?

[rufusrufus]

I feel for you. Maybe something happened before he came home that upset him and it all came out when he got home?

[LancsLad]

Jeanne in being really honest there is nothing wrong with looking for imporvements but expecting them to be there all the time is possibly a line of thought which can only lead to disapointments.

 

I would say this is not really a step backwards as Glen has done this before, but rather it is a position which is not a step forwards. The word patience comes to mind. Glen is growing up in many ways and that leads to a lot of internal stress and frustration I suspect. He may not as yet have the intellectual capacity to deal with these emotions. I think when he does again take steps forwards, which he will, it will be through having a greater awarness of these new emotions and possibly slightly better capacities to intellectualise them.

 

These things take time. The improtant thing is not to transpose this stuff back onto yourself. You have not failed this weekend Jeanne rather things didn't go as well as you hoped. Hope is very important and Glen needs you to have a lot of hope about his future he needs to feel that level of support.

 

I guess things are what they are, we just need to find a level of acceptance about that and that is difficult at times.

 

Take care.

[JeanneA]

Hi thanks so much for the replies. You are quite right lancslad I do have a lot of hope for Glen's future and I try and stay positive. When I'm around Glen I smile a lot particularly when looking at him, I try not to show that I'm anxious/on edge which I am at times!! I have learnt though not to show those feelings of anxiety in front of him.

[Special_talent123]

oh i sorry this has got so bad for u.

[trekster]

i hope Glen will have happier times and life will improve for him. i admire you as you're so understanding of your son, wish you were my mum at times.

[JeanneA]

Hi special talent and trekster. I hope that you receive help Sp.Talent for the possible bi-polar at least professionals are looking into it.

Thanks trekster for what you said it was very nice of you. It isn't easy being a Mum at times and especially when your child has got problems, I've just tried to be a understanding and happy as I can even in extremely difficult situations. I hope as Glen does mature he will be able to control his aggression more and so be kinder to himself.

[lisac]

Hi Jeanne i know it might sound either silly or obvious but can you be sure his head or eye werent hurting him beforehand? which made him hit them. My son will attack the part of his body that is giving him pain, which seems bizarre to me, as it then must hurt him even more. Has he had his eyes checked?

[trekster]

i know it seems strange, i have hit my stomach and told it to 'shut up'. i have also become shouty and hyperactive due to my pain.

[JeanneA]

Hi lisa and trekster, with Glen I wouldn't know if anything was hurting him as he isn't able to tell me that. I however doubt knowing glen as I do I feel he self harms for attention and the more attention you give him, i.e. trying to talk to him, trying to stop him the more he will do it. If you ignor him than he tends to finish quicker and carries on as if nothing has happened. It is hard as a Mum to ignore what he's, like on saturday night when I tried to stop him hitting himself, I realise I should not have done this as I made the situation worse.

 

Unfortunately, Glen went to hospital today due to the fact he kept hitting himself in the face and eye this morning. his eye was red and watery, the hospital prescribed eye drops, I think the care home staff are going to have real problems trying to administer drops somehow! Glen has to go to the doctor's tomorrow so that he can check out his eye. It was very worrying to hear about this as you can imagine. I just hope this negative phase of Glen's passes quickly, he was so happy until recently, but thats how Glen is very changeable.

 

Glen's eyes have been checked Lisa and he was prescribed glasses for reading etc, but he won't wear the glasses, which I'm not surprised about.

[Special_talent123]

thank you Jeanne I will not know if i can have a reassessment until sept 18th

[Special_talent123]

oh im so sorry your son is having a tough time, its even tough for u too.

[JeanneA]

Thanks for letting me know about your assessment date, I hope that goes well for you. Thanks for your kind comments regarding Glen.

[darkshine]

Hi thanks so much for the replies. You are quite right lancslad I do have a lot of hope for Glen's future and I try and stay positive. When I'm around Glen I smile a lot particularly when looking at him, I try not to show that I'm anxious/on edge which I am at times!! I have learnt though not to show those feelings of anxiety in front of him.

 

I can feel when people are anxious and on edge or stressed... it's like waves in the room...

 

Does anyone else?

[aspergers mom]

I can feel when people are anxious and on edge or stressed... it's like waves in the room...

 

Does anyone else?

I can only reply from a mothers point of view.My son has told me that when I am stressed hoping that everything will go ok he picks up on it straight away.Of course that is when things go wrong because I am so stressed anything that is done or said is magnified in my own mind.I wish I was one the laid back type who could just let the aspergers world flow by me.Twice when he was young I listened to well meaning friends and wasn't so protective.The first time I nearly lost him in the sinking sands a Burnham and the second he ran straight at a bonfire.

[JeanneA]

I had a phone call from Cheryl the care home manager to say she went with Glen back to the hospital today and he co-operated initially with the hospital staff but after a while he became aggressive and started hitting out again. The doctor said Glen needs an operation on his eye as he has a detached retina due to him constantly hitting himself in the face and eye. The operation will take place one day next week, Glen will be in there for a day. If he doesn't have the op then he will go blind in that eye.

 

I found out from Cheryl this morning that Glen was so violent at the hospital yesterday to her and hospital staff that for their own and his own safety the police were called. The police came and hand cuffed Glen as they had no choice because of the safety issue, apparently glen shouted out 'get them off' all the time (meaning the hand cuffs). I was so shocked and upset (and still am) to hear about the police hand-cuffing Glen but I suppose Cheryl didn't have any choice.

 

Cheryl told me that the care home staff and herself will work with Glen to try to stop him hitting himself. I think they need to get the psychiatrist involved and I also feel they should give him some kind of medication to help ease his anxiety and aggression at this moment in time. I am feeling so sad at the moment. Glen must have been so scared when the police arrived and hand cuffed him.

[lisac]

Jeanne you are not alone. The exact thing happened to my sons eye. The detatched retina wasnt picked up till too late and the sight in his left eye couldnt be saved. The specialist thought it was likely a weakness he had been born with and nothing to do with the headbanging and punching himself in the eye. ( who really knows though) . I cried for months afterwards and still blame myself and cant forgive myself for not picking up on it sooner. My son was so aggressive i was petrified. Funnily enough, his behaviour improved after the retina detatchment as the eye no longer gave him discomfort. He gets about fine with only the sight in one eye and apparently the only thing you cant do is fly a plane according to the eye specialist. I know what you are going through. Glen will have to leave his eye alone after the operation can you ask the hospital to knock him out with some drugs so he wont keep going for the eye afterwards?

[Special_talent123]

Thanks for letting me know about your assessment date, I hope that goes well for you. Thanks for your kind comments regarding Glen.

 

that is okay. I hope Glen has now calmed down?

[Special_talent123]

I had a phone call from Cheryl the care home manager to say she went with Glen back to the hospital today and he co-operated initially with the hospital staff but after a while he became aggressive and started hitting out again. The doctor said Glen needs an operation on his eye as he has a detached retina due to him constantly hitting himself in the face and eye. The operation will take place one day next week, Glen will be in there for a day. If he doesn't have the op then he will go blind in that eye.

 

I found out from Cheryl this morning that Glen was so violent at the hospital yesterday to her and hospital staff that for their own and his own safety the police were called. The police came and hand cuffed Glen as they had no choice because of the safety issue, apparently glen shouted out 'get them off' all the time (meaning the hand cuffs). I was so shocked and upset (and still am) to hear about the police hand-cuffing Glen but I suppose Cheryl didn't have any choice.

 

Cheryl told me that the care home staff and herself will work with Glen to try to stop him hitting himself. I think they need to get the psychiatrist involved and I also feel they should give him some kind of medication to help ease his anxiety and aggression at this moment in time. I am feeling so sad at the moment. Glen must have been so scared when the police arrived and hand cuffed him.

 

sorry its getting worse. I am quite surprised the police had hand cuffed him considering his severe learning difficulties and autism? What ever for his violent outbursts could be to anthing like trying to communicate but struggling too or having problems saying what is wrong? Maybe they should do social story with him to say what is appropriate and what is not appropriate. I will admit a long time ago, the scared police scared me- I was 14 years old so i was only just about diagnosed with autism and I do not know what led me on but i was waving a knife about which i had no concept of right from wrong and police came around and scared me they gave me a warning that if i did not do it again it would not go on my records. Something must of triggered me, unfornately I do not know what triggered my outburst off. Now that i found out i had autism when 16 years old after doing research I have learnt to control my behaviours better and I am not that person i used too be. I used to throw chairs at teachers. If anyone seen 'waterloo road series three' then Karla Bentham I relate too because she gets provoked by a teacher gruntly budgem and lashes out at him when he winds her up , especially he started singling her out of lessons/exams for being disruptive instead of special measures in place. she was humming in a mock exam and he sent her out for being disruptive

[JeanneA]

Thanks for your replies lisa and SP. At least Glen's detatched retina has been caught early so I'm hopeful for a full recovery. Sorry to hear about your son Lisa. Did that effect him only being able to see out one eye? As that is the worry I have with Glen if I were not to consent to Glen having the op he could lose his sight in that eye and he just would not understand why he couldn't see out that eye anymore. I am very concerned about the recovery period, but I know the care home manager will mention the fact about drugs and see what the doctors say.

 

They will do a social story with Glen at the home to try and get through to him not to hit his eye. I don't know whether it will work though, social stories in the past haven't really worked with Glen.

 

I'm sorry to hear about the incident in your past when the police scared you. When you said about throwing chairs, thats what Glen's done in the past in the classroom and still has now at times. I'm so pleased that you are able to control your behaviours now, I do hope that Glen will be able to in time.

 

The care home manager rang me this afternoon to say Glen has settled down again which was good to hear. I'm so dreading when Glen has to go into hospital, the manager said they may have to get a doctor to give him some medication at the care home so it starts working to keep him calm whilst he goes to the hospital, otherwise they might not be able to get him there.

[Special_talent123]

maybe he does not like hospitals. I do not like hospitals, i want to get out of hospital quickly its too busy, too many people too claustaphobic, waiting to long so on it set a panic attack off.... maybe he does not like hospitals?

[Special_talent123]

also something like PECS that can help him to communicate what is wrong ?

[Mandapanda]

Hi Jeanne

 

So sorry to hear this.

 

You say Glen does it for attention and he finishes quicker if ignored - could that just be because he's not been interrupted? If he has to start and finish then trying to stop him before he's ready will probably just delay things. Though I know it must be so upsetting to watch.

 

I wonder if he was feeling unwell in some way and this is the only way he can express it? I know it's awful the police being involved but hopefully it will lead to some sort of satisfactory resolution and the services will be able to help Glen on this. I can't imagine what it must be like to be Glen but I would guess it must be very frustrating to not be able to express yourself so that others can understand.

 

Look after yourself - and DO NOT BLAME YOURSELF!! <'> >< <'>

[oxgirl]

Hi Jeanne, so sorry to hear about Glen and the damage he has done to his eye, that must be awful for you. Maybe his eye has been uncomfortable for a while and that is why he has been hitting it, getting frustrated with it not feeling right. Maybe after the operation it will feel more comfortable and it might stop him doing it. I know that you trust that staff who care for him, I'm sure they would only have called the police if that was the very last resort. If he had a damaged eye they had to stop him hitting it and causing more damage and, unfortunately, if they couldn't stop him by other means they had to use force for his own long-term good. I know it's horrible to hear, but they all had his best interests at heart.

 

I really hope the operation goes well. I know you'll be worried sick though.

 

Thinking of you.

 

~ Mel ~

[JeanneA]

Hi manda & oxgirl thanks for your comments. I am a very worried Mum, I don't know how Glen will cope with the recovery period. Staff will have to stop him hitting himself and I don't know how they will go about it. The recovery period can be up to 12 weeks which is a very long time.

 

I realise that calling the police was a last resort but the thought of my son in hand cuffs is just distressing to say the least and I can just imagine how scared he must have been.

 

I don't know if Glen was unwell Manda it is so difficult to tell with him I'm afraid, but he has always had spells of hitting himself on his head or face, I hate to say this but he has a very 'evil' look on his face whilst he's doing it. It's just awful to see.

[lisac]

Hi Jeanne as someone else said, maybe his eye will be more comfortable after the operation which might stop him hitting it. If not, is it possible he could be heavily sedated with medication throughout the recovery period to stop him hitting it and allow his eye to heal? I understand the very 'evil' look. My son has this too and it seems like he is intent on causing the upmost damage to himself possible. Autism is very cruel.

[JeanneA]

Yes Lisa i totally agree autism is very cruel, when you have kids you want the best for them you want them to grow being happy if life it just makes me so sad to see your child hurt themselves in such a forceful way.

 

I will be enquiring about whether Glen can be sedated for a period after the op, I don't know what the pattern is but I think it could be well worth while if they did after all it is very important that the eye is given chance to heal.

[trekster]

I can only reply from a mothers point of view.My son has told me that when I am stressed hoping that everything will go ok he picks up on it straight away.Of course that is when things go wrong because I am so stressed anything that is done or said is magnified in my own mind.I wish I was one the laid back type who could just let the aspergers world flow by me.Twice when he was young I listened to well meaning friends and wasn't so protective.The first time I nearly lost him in the sinking sands a Burnham and the second he ran straight at a bonfire.

 

This is where the New Scientist Article from sometime ago comes into play "aspergers theory does an about face", '....feel others emotions too intensely to cope', that's me all over. I can sense an uneasy atmosphere in a room.

 

As for autism being really cruel i hate my autism when my emotions overload me or others, especially when it results in people jumping to wrong conclusions about my actions and intentions.

[JeanneA]

Thanks for your comments Trekster. Glen has settled down again now at the care home, I rang up a short while ago. They are hoping to get him sedated before he goes to the hospital for his op otherwise he will probably became very agitated again and chances are the operation won't go ahead.

[JeanneA]

Glen had his op today. They have successful repaired the detached retina and Glen is now back at the care home. The op went well. Glen was quite agitated before the op and wanted to get out the hospital but thankfully he was given his pre-med and then eventually calmed down so they could operate. He doesn't have a eye patch which I had expected, the eye is sore obviously but otherwise all ok. Glen will have to take medication for a while of course. I just hope the recovery period goes well and Glen doesn't try to hit his eye again.

[Special_talent123]

thats good hope his recovery will improve quickly

[JeanneA]

Thanks Kirsty I appreciate that, will keep you all updated. Staff kindly got Glen a mc.donalds take away on the way back to the home :-)

[Charlie C]

It sounds are really nice caring home Glen is in.

[JeanneA]

Thanks Charlie yes it is a nice home Glen really enjoyed his mc.donalds treat :-)

[Special_talent123]

thats nice he deserved a treat

[trekster]

Pleased your son is back in the care home recovering. Have you considered other forms of communication eg PECS

as I get the impression his lack of verbal ability is partly what's causing the hitting himself behaviour.

[JeanneA]

Hi trekster, yes pecs has been tried before and didn't work that well at the time but I know the care home are using pecs with Glen as a form of communication but it's a job in progress as they say!

[oxgirl]

Hi Jeanne, really hope Glen feels better after the op and that he isn't too uncomfortable.

 

~ Mel ~

[JeanneA]

Thanks oxgirl, i rang again this morning and Glen had a settled night and was having a lay in. :=)

[lisac]

Thats great news Jeanne xx