Self harming concerns

[JeanneA]

Hi I didn't know whether to post this thread or not, but I could really do with any advice/suggestions that may, make sense of what is going on in my son Glen's head.

 

Glen was moved from the care home he was in to a care home (owned by the same company) for young adults (5) about 15 minutes away so not far. Glen moved in on October 1st. Prior to that he had his eye operation to repair the retina. So he has been through a lot of recent. Two weeks after he moved he had to have his eye checked to see if it was healing ok, so he had to go under general anesthetic again like he did for the operation. All was completely fine with his eye.

 

Anyway, since then his self harming has increased, although there are periods apparently when he gets through the day with no self harming or very little. Before he came home on Friday for the weekend, Glen's self harming had increased again, whereas the week before that he had a settled week. On Saturday particularly Glen self harmed for long spells at a time, more at the end of the afternoon and early evening, just before dinner and in his room at bed time. I have never seen him hit himself with such force and for so long at a time. He cut his lip in the process and around his eye looked awful, I have no idea if he's damaged the eye itself I am hoping and praying he hasn't . I would imagine when the care home manager sees Glen today he'll call the doctor to check him out. It was so upsetting as a Mum to watch Glen harm himself in this way, I am shaking now as I write this and I've been shaking since Saturday, my nerves are really bad. My husband and I tried really hard to distract/redirect Glen whilst he was hurting himself but nothing worked. We feel like we've failed to help our son.

 

Glen was quite unsettled during his time here, which is such a shame, I thought he would be happy to be home. I think it was probably the worst visit in sometime. I am pleased that this care home has a psychiatrist and psychologist on call which not all care homes have. The psychiatrist said when she saw Glen during last week, he's going to be one of these young people who will take a long time to settle in, could be as much as 4-5 months in her opinion.

 

I hope that Glen isn't unhappy at the home (as he can't tell you how he feels), I hope it's the fact that for someone like Glen who is one extremely complexed young person, it's going to take a long time for him to feel settled there.

 

My husband and I are still looking at care homes local to us in case Glen is moved next summer due to funding. We are looking at a home on Wednesday. However, with this current move seemingly being so traumatic for Glen I don't think anyone really wants to move Glen again next year because of the effects this current move seems to be having on him now. Glen's social worker has said, we have a good case for keeping Glen where he is providing the home is the right one for him, which I guess we will find out in due course. In the meantime, something has to be done to stop Glen from hurting himself in such a way as he is doing, otherwise he will end up in hospital again.

 

Any thoughts/advice is very, very welcome. Sorry for such a long thread!

[StoneDog]

***hugs***

 

it can take us ages to settle. Sounds to me like you are doing everything right.

 

***hugs***

[LancsLad]

Jeanne there could be many aspects to this and all of them might be intertwined. To focus on one. A few years back I had an injury through playing rugby where I fractured my cheek bone in theree places and did a bit of damage to my eye, I needed surgery. The healing process was very disconcerting far more than many of the other injuries I have experienced because it was in my face and very close to my senses of not just sight but hearing and smell and taste, It was an injury close to my processing centre.

 

Now given my ability to reason I came to the understanding that I had to simply let time do its job and to concentrate on other things to take the focus away. When it comes to self harm behaviour I think there can be an element which I relate to where we want to lay pain down as a masking agent over the top of other feelings. I might describe this as if the side of my face was uncomfortable and at a level of discomfort say five on a one to ten scale laying down a bit of pain at a seven takes away the level five stuff I don't really understand, it is a familiar feeling. My young son does this all the time he has skin problems which he makes worse by putting an understandable layer over the top of them 'pain' and so he sctraches dry skin areas untill they bleed. We are programmed to understand pain we are hot wired in our brains to recognise it, but for some individuals we are not too sure about discomfort and that is emotionally unsettling.

 

In Glens instance my response might be to look at healing rates. If the underlying issues are healing then this is a period eventually which will resolve itself the underlying discomfort will vanish, my own face is now healed and it did a long time ago a few months after the surgery I was aware I didn't feel any discomfort anymore. In a similar way the superficial damage through self harm will also heal given time though at the moment Glen might look a mess. At times I try reasoning with my son and I then go into his room in the middle of the night because he is restless and he is attack himself in a subconcious state. Without being disrespectful I suspect Glen is possibly in this subconcious state a lot of the time. So what can you do as with all self harm you can't monitor the individual for a few months day and night and so when opportunitie arrise they will self harm if the desire is strong enough. Any self harmer such as myself will tell you the pain makes it feel better, or at least for a short period because it makes sense of our emotional feelings we understand it. That is a very powerfull force and it is something you will have great difficulty fighting against.

 

To sum up my point if the medical people say things are going in the right direction no matter how messy then go with them even though as a parent I understand your frustration and how upsetting this type of behaviour can be. These things are not easy to watch they are even harder when you are Glen or another self harmer having to deal with them but we someohow survive and pull through we are after all very resiliant creatures.

[karmadestiny]

Jeanne, Its not easy to watch your loved one self harm especially with such force and aggression, i've been there with my niece, know that like Lanclad said it will subside when thing become alittle more tolerable for him...Children with mental health isue need stability and balance to feel safe and cared for...not being settled in the carehome and moving form place to place can rattle even the strongest of us...Just be there for him, if he allows you to come close, just hold his arms in place and hold him against you...let him feel you care....that his not alone...all he needs is comfort to know everything will be ok...I know that will be the hardest thing to do when all he wants to do is lash out but you have to find that child within him thats hurting so badly...He needs to learn trust again...xox

[JeanneA]

Thanks so much for your wonderful comments, it is helped me tremendously to understand more what Glen maybe feeling. I was there for him over the weekend but I guess I just felt quite helpless at times, but like you've both said he is a self harmer and has to do what he does. It is so distressing to watch him though. Hopefully overtime once he's eye is properly 'ok' again and he's settled more at the care home he will self harm much less and feel happier in himself. What I did notice, in my opinion, he really looked very unhappy and also his eyes had that awful 'evil look' to them which I have seen in the past but hadn't seen for quite a while till this weekend.

[trekster]

Would he use a weighted blanket to help settle himself? Also could he be in pain but unable to tell you? Pain is the cause of 95% of 'challenging behaviours' in fact some professionals prefer to use the term 'challenging communicative behaviour'.

[lisac]

Hi Jeanne i have no suggestions , im just here to say i understand <'> I know about having the shakes too, each time my son severly self harmed id vomit. I am sure i might have post traumatic stress disorder.

When my son was at his worst i didnt know what to do so rang the Nas helpline in the middle of the night and cried down the phone ( fat lot of use that was). His phsyciatrist just upped his dose of medication which seemed to work for a bit. Maybe more meds might be needed for a while. Fingers crossed it gets easier for Glen and you X

[JeanneA]

Hi trekster and lisa. Glen has a ball blanket which is very heavy and he does have this over him at times. The psychiatrist who sees Glen regularly has increased his anti-depressant/anxiety medication so he now has a dose in the mornings as well as in the evenings.

 

One thing that I know Glen is unhappy about and theres nothing I can do and that is Glen has always liked car rides, The home he was previously in for the younger ones he would get a 'van ride' almost every day. He would keep hitting himself and staff until he got a ride, which I don't agree that you should give into every time, I think they did it for an easy life so to speak. However, at this home it has gone from one extreme to another, meaning Glen now only gets one 'van ride' a week on a Monday afternoon. The reason is they only have the one van between five young people to share and it is also to do with financial reasons as a member of staff who brought Glen home on Friday told me! I have spoken to the manager on several occasions saying that going from 6 or 7 rides a week to just 1 for someone like Glen is not going to be easy to say the least. Car rides have been a big part of his life, the times he has been his most happiest is whilst he's in a vehicle. The manager says he understands but cannot give him anymore than the 1 ride a week. I've spoken to Glen's social worker who just agrees with what the manager says. Like I say i don't believe Glen should have rides every day but I think a compromise should be made considering how Glen is hurting himself so much which I'm sure is part of the reason.

 

Glen does go on public transport as well with a member of staff on a Tuesday, Thursday and sometimes a Friday, but he doesn't want to get off at the other end. Glen just wants one continuous ride like he does in a car or the van. Can anyone else relate to this at all, if you are autistic did you go through a spell of wanting vehicle rides all the time, is it the motion of the vehicle that is a sensory need?? I would be very interested in hearing your views, thanks

[lisac]

What a shame Glen cant have what he wants and needs. It seems wrong. Who would be able to fund extra rides each day social services or the home?

[darkshine]

Sometimes when I don't feel right or I have some ache or pain I feel the need to hurt myself harder and when the additional pain subsides it makes me feel better and the original ache, pain, or even sensation feels easier to handle.

[trekster]

What Darkshine is saying makes sense to me, i used to hit my stomach and tell it to shut up when i got pain there. Didn't realise it was my stomach saying 'feed me' but even now im sat here with a stomach ache and ive got no idea as to the cause. i know thast hitting my stomach would be a bad idea but im guessing it is IBS bloating.

 

The car rides thing is totally unfair why cant they put glen on 6 car rides this week then 5 the next and so on until he is down to 1 car ride a week.

 

Is there a bus route that goes round in a continual loop that he could go on? If you buy a day ticket you can stay on the bus all day until the last 1 of the evening.

 

im also thinking it is a sensory seeking activity unsure which sense he is seeking as the home would hopefully provide him with an alternative input for that sensory seeking behaviour? A bit of googling has mentioned a hypo sensitive vestibular system so your son is craving balance perception. Does he still have access to his bike? There are a few books on autism and sensory issues see if their explanations make sense and hopefully find an alternative.

[JeanneA]

Hi I'm not sure if the bus route goes round in a loop or not I will have to find out. He goes out for a bike ride once a week enjoys it most of the time but has refused to go a couple of times.

I also think it is totally unfair the way they have gone about the rides by cutting down so drastically it is just not right for Glen doing it this way.

They have referred Glen to a occupational therapist, so he can have an assessment, I don't know how quick this will be though.

I am very worried about him, and wonder what he will be like when he comes home the next time in 4 weeks and whether he will be even more worse in his behaviour than he was this time. He clearly did not want to go back he hit himself continuously the whole journey back as I found out when I spoke to the manager yesterday. I cannot just do nothing it is really breaking my heart to know how unhappy Glen is. I am going to make a few calls today.

 

The advocate has not been in touch at all since the review meeting on November 13th, she has not replied to any of my emails. I am going to try and call her this afternoon. I really need her help and am disappointed with her lack of contact, she seemed so nice at the meeting, I was so pleased to find a autism advocate but now it seems that she doesn't want to know!

[lisac]

Unfortunately, a lot of care homes are not person centred despite saying they are. Jeanne if it was me, I would start focusing on trying to get him into a care home nearer home in Essex. That way at least you will be able to monitor what they are doing and not doing. You could be more involved and hopefully work together if the manger is open to that. That is in an ideal world though. Im my opinion giving Glen what he wants/ needs and upping or changing the medication might help matters for now, i so hope he stops hurting himself x

[JeanneA]

Hi Lisa thanks for your comments. My husband and I are going to see a care home tomorrow which is local to us. I am so hoping that it is a good one and have my questions to ask at the ready! Glen has been more settled today, someone rung me a short time ago. He has gone on the bus with a member of staff to town to get a drink and then come back again. He is out for sometime which is good. He has hit himself this morning though but not with as much force as normal. Perhaps the extra medication he's having in the mornings is starting to work you never know.

 

As you said though Lisa I think it would be better if Glen was in a care home nearer to us so we could keep more of an eye on him so to speak. I will let you know how we get on tomorrow. this home caters for 5 young adults, so the same as the care home he's currently in.

[trekster]

JeanneA ask if the occupational therapist can do sensory evaluations and if you can write down your concerns about your son. If you find out where the occupational therapist address is you could write a letter expressing your concerns. Keep on at them until you get some answers. Hope you can get in touch with the advocate soon and that she has just been dealing with other cases in the run up to xmas.

[JeanneA]

Hi trekster, the a referral has been made to the OT but I don't know how long it will take before Glen is seen. I will keep an eye on this though, I will keep pushing for this assessment as I know how important it is for Glen by his previous OT assessments.

The advocate has now got back to me, she was on annual leave, but she could have told me this I feel rather than not contact me prior to going on AL. Anyway, she shares my concerns and is arranging to go into the home asap (the end of this week or early next) to see Glen and to speak to the manager on Glen's behalf raising the concerns regarding 'the rides' and other issues. So it will be interesting to see how she gets on. I will keep you updated.

 

Unfortunately due to the heavy snow we've had here in Essex where I live, we are not able to go and see the care home today. I will be re-arranging another day and time to go, hopefully next week as I want to see it asap.