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How do you insulate yourself from despair?

(96 Posts)
Livingtothefull Mon 29-Aug-16 01:19:13

My DS (15) has severe and complex disabilities and learning difficulties, he is my only DC. I find it hard to deal with because nobody wants their DC to be more disadvantaged in life than they themselves are.

A couple of days ago I was out & about with DS and something happened to trigger a meltdown/tantrum. DS screamed at me that I was a 'f---ing bitch' and bit me on the arm a couple of times….really tried to dig his teeth in at my wrist, where the arteries are - although he has learning difficulties he is not daft you see, he knows what is likely to do the most damage.

I managed to restrain him but in the process of getting him off my wrist he tumbled out of the wheelchair and onto the pavement. The wheel came off the wheelchair, I was worried that it was irreparably damaged. My first thought: 'How am I going to get him home if the wheelchair is broken?'. Another thought : 'What if he hurts a member of the public?'. He was out of my control.

DS lay on the pavement, screamed at me, punched and and kicked me and passers by, and tried to bite me again. Then he tried to break a shop window by punching it and bashed his head against the pavement in a frenzy. I tried to stop him damaging himself this way & he bit me again, I have to say that bites are very painful.

At this point a little crowd had gathered, thought that this was all highly amusing & laughed at DS and me.

Some other people intervened & sent the 'little crowd' packing. There were 4 or 5 people who helped (both passers by & people from nearby businesses), they were all absolutely wonderful, lovely people. They helped to restrain DS, put a cushion under his head to stop him hurting himself, fixed the wheelchair, hailed a taxi & helped me put DS in so I could get him home.

The incident took a toll on me though, I was exhausted after & am covered in cuts and bruises. I have a demanding full time job, have to go back to it after the bank holiday and dread being asked about what my weekend was like/what I got up to etc. My family are lovely but they can't understand what it's like….that's not their fault. I tell them about DS, that he lashes out (like many regular teenagers do after all) because he can't express himself any other way and is so physically restricted that not wonder he lashes out. They are just like 'That's a shame'. It's not their fault; there is literally nothing to say about it, nothing I can say about the hurt & feel and no words of wisdom they can ever say to comfort me.

Nothing to be said or done to 'nail' and remove the emotional pain and that's nobody's fault. My experiences are so off the wall, it is very isolating. I know that I will have a repeat of this incident and I am fairly sure that one day, DS will really hurt me. He is getting bigger and harder to handle.

I am sitting up this evening, pondering how I keep going for everyone's sake and ensure that I don't give up or despair. The way that I deal with it is to keep some critical distance between me and my emotional upsets; to be a 'doer' a thing that simply does what has to be done. I live in the zone of 'not despairing just doing' and it works for me most of the time, I have found this strategy works OK but it may not be the best one, has anyone any ideas about what could work?

HappyJanuary Mon 29-Aug-16 07:15:37

I'm so sorry that I have no experience of this, but just wanted to say that you sound like a wonderful mum and your DS is so lucky to have you.

While you wait for more helpful replies here, you could also try posting in the SEN section of Education as there are other parents there with similar experiences.

thesandwich Mon 29-Aug-16 07:27:52

Oh living I remember you from other threads- I cannot imagine how awful your experience must ha ve been and as you say it will happen again.
I am full of admiration for you and respect how you handle this situation- and recognise the desire to just keep doing as the alternative is so bleak.
But you are not a machine- and even machines need maintenance.
I have no experience so cannot offer practical ideas but support systems/ self care such as an hour to yourself to have a massage/ go for a walk/ meet a friend is essential.
And having someone to offload to- are there support groups at all? Would a counsellor help at all? Sending flowers

Dozer Mon 29-Aug-16 07:40:10

I'm sorry that happened to you.

I don't think you should have to deal with it alone and should have support from health and social services. Do you have any already? Know getting help is v hard, which is really unfair. Taking pictures of your injuries might be useful in seeking help.

Also important to be "in th system" in case in future you're not able to care for DS for any reason.

sandgrown Mon 29-Aug-16 07:47:53

You are amazing for the love and support you give your son but you need to care for yourself too. Is there any respite care available in your area? If he is a big strong lad you may need some male assistance in the future. Can his dad/grandad/uncle help?

Dozer Mon 29-Aug-16 07:53:06

Or a carer.

backtothe80s Mon 29-Aug-16 08:41:01

Living - I feel for you I really do - I'm not going to repeat what everyone else has said but offer you something different -despair can hit us in various situations - meditation is slowly working for me - I still have moments of despair and depression but I needed to try something different - have a look be open minded - I have found the greatest level of understanding, maybe your cup of tea may not www.globalretreatcentre.org

pinkdonkey Mon 29-Aug-16 08:51:57

You are not alone OP. Although I have no direct experience of what you are going through I am aware from a brief spell in an adult learning disability service as a student, that your situation is not uncommon. Does you DS have a key worker in paediatrics or at school who you could talk to about practical and emotional support. Have you had a carers assesment yourself recently through social services, as things have changed and there may be different suppirt available.

The teenage years are always difficult and I appriciate it must be especially tough for you and DS, big hugs to you.

Livingtothefull Mon 29-Aug-16 12:34:25

Thank you all. Yes we are accessing the care services we are entitled to through his key workers, never as much as we would like to have though it does help. DS seems to lash out only when he is with us (DH and/or me), his school & carers have not reported any problems like this.

DH is as involved in DS as I am so I am not alone.

I am receiving treatment for anxiety & depression which has really helped me feel better in myself….the problems don't of course go away. I am trying to work harder at improving my wellbeing and 'despair-proofing' myself. It is another uphill battle with myself as I am naturally a lazy person.

Thanks for the link backtothe80s, I will investigate that. I have been looking at Mindfulness too,….it is hard to discipline myself to do these things regularly though.

Generally I find it hard to prioritise myself as whenever I plan to go running/practice mindfulness the first thing that goes through my head is 'just one thing I have to do'. I know this is my own shortcoming though. In other areas (such as caring for DS) as explained above I have learned to 'just do'…..why can't I apply this when caring for myself?

Livingtothefull Fri 07-Oct-16 11:07:52

I am 'resurrecting' this thread as something more has happened & am just not coping.

I have been finding my workload difficult & the work is piling up….I don't know how much of that is reality & how much my perception, but my manager has been asking the status of things & I realise I have let them drop & been scared to admit this. At the same time my DS has been really challenging.

This week something serious happened with an employee at work….to cut a long story short, I thought I was going to have to ring up someone and get bad news, then pass this on to colleagues. Luckily it didn't come to that but I was seriously stressed out & it seemed to bring back memories of traumatic times in my past.

Yesterday I had a serious meltdown at work. Couldn't talk or move, couldn't function at all. I have had this happen in the past but not this bad. I was taken to A&E, they think I had a fit.

I feel just terrible now. I have ruined everything, at work they will never have any respect for me or faith in me now they can see I can't cope. I have let down my DH (who is under as much pressure from me but had to come to A&E with me yesterday) and I have let down my DS whom I need to always be there for. Last night I had bad dreams in a work context, of people 'telling me off' and saying they were disappointed with me.

Now I have well and truly burned my bridges, what do I do?

UpYerGansey Fri 07-Oct-16 11:51:17

Hello living

I have no experience of the enormous pressure you must be feeling but I feel huge empathy for you. Big un-mumsnetty hug from me flowers

All I can think is, have you told your work about your personal circumstances? Do they know about what you're going through?
I have to think they'd cut you some slack if they had some appreciation of your situation?

Livingtothefull Fri 07-Oct-16 12:03:48

Hallo UpYerGansey and thank you. Yes they do know my circumstances and are sympathetic but at the same time, they need to rely on me doing my job well. I hate the fact that I am letting them down.

flapjackfairy Fri 07-Oct-16 12:03:50

You have not let anyone down. Please hear what i am saying. You have been amazing to have got so far with your son and work as well. I am full of respect and admiration for you. But you are now at breaking point and need to kick and scream for proper respite and support to enable you to have breaks to recharge your batteries.

Approach everyone you can and see your gp.

Sadly some sen children reach a point where they are unable to remain at home due to the risks both to themselves and others. I am not saying you have reached that point but you need some long term solution. And as you have so graphically described many people do not understand and simply add to the humiliation and embarrassment when your child has a meltdown in public.

I myself have 2 sen children and have friends who have been in your position. Some have had to transition their children into residential settings in their teens . It is heartbreaking when your child is so distressed but cannot express it in an appropriate way but the situation at home was simply untenable.

I really hope you get support. You are an amazing mum and have nothing to berate yourself for . Take a break from work if you can (and i am sure they are full of admiration for you also)

Good luck you are not alone many of us face similar and struggle as you do . Please update if you can i will be thinking of you living.

Livingtothefull Fri 07-Oct-16 14:25:56

Hallo flapjackfairy - thank you so so much. I am seeing my GP this afternoon and know I need to have a strategy together, will hopefully things will get better once I have a clearer picture of what I need to do.

nicenewdusters Fri 07-Oct-16 14:54:14

A family friend whom I have known all my life has 2 two sons. The eldest, now in his forties, has very severe autism along with many other additional needs. He has been in residential care since the age of 7. His whole life has been a struggle, and my friend and her husband have experienced huge ups and downs in their struggle to give him the best life possible.

My reason for posting is that on two occasions I have worked in the same office as my friend. She had a fairly senior position there. Her colleagues were aware of the difficulties she faced in her life, and were in awe of how she coped. I don't know if she ever realised this. They heard her phone conversations with care givers etc, saw her having to rush off in emergencies, and had nothing but respect for her. She was very conscientious and with give and take she had a long and successful career.

You always get the odd person who has no sympathy/empathy, but I'm sure your work colleagues have only concern for you. You have coped, but things have come to a head. The body has a wonderful way of telling you enough is enough, despite your head saying carry on. I'm sure they have huge respect for you, and will not be seeing you as weak. In fact I'm sure they think the opposite. You're not Wonder Woman - and you don't have to be.

Hope the GP visit is helpful and the beginning of your strategy . Take care.

Livingtothefull Fri 07-Oct-16 18:10:16

Thank you for that nicenewdusters I hope that my colleagues have concern for me. They seemed really concerned yesterday but I hate all the drama. I am seriously worried now about going back to work next week, am worried about what they may think of me & what the fallout/consequences of my failing yesterday will be, so hope this worry turns out to be unfounded.

The GP offered to sign me off but if there is music to be faced better to face it soon even though I will be in dread all weekend. I am being referred to a specialist re the fits and also counselling..she also thought I seemed to lack self confidence and that I should have faith that I am doing a good job.

How to get it though? Confidence and competence are so interdependent…I can't be confident until I'm sure I am doing a good job. At the moment I don't have that faith in myself so any perceived criticism & I just crumble. I have to get my act together and fast but how?

ImperialBlether Fri 07-Oct-16 18:19:02

You and your husband must be under incredible stress.

Your son is in school now - what happens after that?

Livingtothefull Fri 07-Oct-16 18:28:20

Hallo ImperialBlether the short answer is, I don't know - yet. We will probably look for a residential arrangement because I don't think it is in his long term interest to remain with us. He is very vulnerable - needs one to one care at all times. So thinking in terms of residential accommodation close by us, where he can be with other young people, have outings & have fun but be close by us so we can have him for weekends, holidays etc. Not too much to ask is it?

Puzzledandpissedoff Fri 07-Oct-16 19:24:26

From the viewpoint of having raised a SN son, I believe you're doing exactly the right thing in considering some kind of supported living. Ex and I did the same when ours turned 19 and it's worked out brilliantly, enabling him to have the maximum independence he can manage, but still with the assurance of safety and care

At the risk of sounding morbid, none of us live forever and you absolutely don't want DS to be forced to move due to some sort of crisis; better, surely, to arrange these things while you can still drive how it's done and advocate for him

This would, of course, also give you the space and time you'll need to protect your own health. Believe me I know how this feels and take my hat off to you for the way you've coped for so long flowers

Livingtothefull Fri 07-Oct-16 22:30:10

Thanks Puzzled, I agree with you that DS should move to a residential care arrangement in a managed way, while we are still around and able to support him and ensure that it is appropriate and he is in a caring environment - not leave it until we are too old to do this or not around at all.

One thing that incidents like in my original post have taught me, is that we won't be able to care for him forever. It is getting difficult for me to do it now. So I am looking to move him to a supported living arrangement when he is about the age your DS was, when he is an adult.

I love him to bits and want to just enjoy being with him - while having much of the burden of caring for him taken away iyswim.

ImperialBlether Sat 08-Oct-16 11:12:11

I think that's the right choice, OP - do you know if it's possible, in terms of what's available?

Livingtothefull Sat 08-Oct-16 11:32:20

I am hoping so Imperial - we are looking into it.

Puzzledandpissedoff Sat 08-Oct-16 20:19:45

Just a thought Living but have you also considered a special needs college for when he's a bit older? Useful link here: www.natspec.org.uk

Admittedly my own DS didn't have behavioral issues along with his special needs, but many of these places will help with that too. In all honesty the college he attended was the making of mine ... maybe have a look at what's on offer?

Livingtothefull Sun 09-Oct-16 13:34:32

Thanks Puzzled, yes I am looking into the best solution for DS and we are definitely considering a special needs college….many thanks for the link I wasn't aware of that one. I am glad your DS benefited from his college. I don't have any particular expectations for my DS, he will always be highly dependent, however if he learns any useful life skills that would be wonderful.

Above all though I just want him to be happy and contented, cared for and not isolated. Most of the time he is a happy boy now, I want him to stay that way.

It's Sunday now & I am just dreading tomorrow. I let myself down so badly last week & I am scared of what is going to be told to me. There are several tasks that I was working on before I left last week….people are going to want outcomes & I won't have them. I am finding it really hard to think straight at the moment.

I am worried I am going to get a negative message, be told it is not working out & I obviously can't cope with my job. I have less than 2 years there so v limited job security. How to I get out of this negative circle and have a better perspective?

flapjackfairy Sun 09-Oct-16 15:28:51

I am sure you are worrying unnecessarily and work will be fine. People understand that you are under huge amount of stress and lets face it non of us are perfect and we all have our limits. You sound like you set v high standards for yourself which is always a recipe for disaster because we then beat ourselves up if we feel we havent attained them.
I understand because i am the same myself. As mentioned i have 2 kids with complex needs and i feel like i have to do everything right (even more so as a foster carer). Well i am presently beating myself up for losing my rag with the oldest one for dismantling the youngers suction machine for the millionth time!

I am normally patient but not today ! I am working on laughing at myself more and lowering my expectations of myself as they are unrealistic. I do my best then let it go !
You sound like an amazing mum who dearly loves her son so go to work with head held high. Sure it will all be fine.

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