to be excused or not to be excused

Posted by Di_Hard on Sat, 29 Sep 2018

The last time I saw my Dad when he could speak, he apologised for not having got through to me how important it was to make a success of my life. "I don't know what I did wrong, what else could I have done to make you understand?" He asked, voice trembling. He'd wanted to look after me and helping me look after myself was the best way. It was horrible, him being in the home. I had gone to the visit thinking maybe I could bring him back here, look after him. A few minutes after this talk he was dragging me up and down the corridors telling me I'd always been bloody minded. I'm not sure if he was still stronger than me, but thought that if I broke free, showing he wasn't, it would be one more terrible indignity added to all the rest, so I let him treat me like a stroppy child. Wondered if that's all he thought I ever was, underneath the patience and kindness. There was no way I'd be able to keep him safe with me at home if he wouldn't accept I knew what I was doing.

At some point, in his room, he'd asked how Mum was. She was the reason he was there, though I'm not sure if he knew that. She wouldn't have him at home anymore. My brothers had kept asking if she could be a bit less angry with him but it's not her nature.

My brother had told me I had to move away because he was worried Mum would have a stroke from getting angry with me - she has high blood pressure. It's not normal, after all, to be living with your parents at 37. But Mum said I wasn't capable of living by myself. It was very frustrating as Dad was always telling us how much money he had made by working so hard for us - he could have bought a flat for me nearby, but Mum said no. So when at last I met someone able to cope with me, I used the money saved from working in the supermarket to buy a flat somewhere nice, but to be affordable and nice it was very far away. When I told her I was pregnant she told me to get an abortion.

After Dad had the stroke It was horrible hearing her on the phone talking to him the way she used to talk to me, like he was an animal, and him just taking it with an embarrassed laugh. How I used to.

One time Mum's stoical making the best of a bad job cracked she said she thought I am the way I am out of spite, to her.

 

So, at 52, I am wondering. Would it help if I had a diagnosis of dyspraxia? Would it help Mum to know there's a reason I am so embarrassing she doesn't mention me in Christmas cards to her family, changes the subject if people ask after me because she is "ashamed" when their children have done so well?

I'm not going to be any different, it won't help me get a job. Won't it just be a new label to stick over the old one?

Comments

Submitted by Insertponceyfre... on

This is so sad Di. It sounds as if you've been the designated family scapegoat (which I think is a Thing in dysfunctional families - google it!). I've just been reading something else interesting, by HarryC in which he writes about his own late diagnosis for another condition (which has some similarities to dyspraxia). If you haven't read it already I really recommend you do - it might help you make your own decision. Here it is:

https://www.abctales.com/story/harryc/martian-closet

 

Submitted by HarryC on

Di - I'm so glad that Insert directed me to this.  It's heart-rending to read.  In many ways, I feel lucky that I had quite a different relationship with my parents - as you've seen in my piece 'Gift'.

Take a look at 'A Martian in the Closet', as Insert suggests, and see if it can help you with your decision.  I know what you mean about labels.  In my life I've had many: clumsy, stupid, anti-social, gullible, naive, rude, over-sensitive, self-centred... the list goes on.  Now, I have just one label: autistic.  It covers everything.  And it's a good one, because it gets me the help and support I need.  It has made a huge difference to me.  It's improved my mental health.  And it helped me to get my current job, too - working with fellow autistic people!

Take care.

Harry x

Submitted by HarryC on

PS Not that it's necessarily relevant - but I didn't leave home until I was 35, and then only because I had no choice.  I was living with mum after dad went into a home.  This was around the start of her illnesses, and the council rehoused her in supported living - so I had to find my own flat.  It's not so unusual nowadays, of course, with people finding it so difficult to afford to move out.  Especially for people in the low-income sector.  For me, it was partly about that.  But it was also about a strong emotional attachment that made it hard for me to be far away from my parents.  At a time when most people are making lives for themselves, I never really felt capable of that level of independence.  I think my then-unknown condition had a lot to do with this.  I seemed to be ignored or rejected wherever I went.  Home was where I was accepted.  And that, too, was why I took on the role of mum's carer at the end.  I knew I was losing the one person who meant the most to me.  My brother is distant and has been for years - partly because of his wife, who's a narcissist.  She's progressively taken him away from his own family and integrated him into hers.  He's even lost his own two children from his first marriage, which is very tragic.  My diagnosis was all the excuse they needed to cut themselves off further.  So now, I don't really have any family left - apart from my mother's sister, who lives in another part of the country.  We keep in touch.  And mum's still around me somewhere, too.  I'm certain of that.

Submitted by Di_Hard on

I am so grateful for all you have said. I wish you had been on ABC some years ago when  social work were saying my son wouldn't get dressed, didn't like parties etc because of my poor parenting.

I am sorry to hear about your family, that is very tough. However you are a welcome person here? ABC got me through being dumped, leaving home and moving to Scotland, nearly dying giving birth,finding my partner had auto immune disorder, my son being put in care, losing jobs, not being able to do art anymore because of arthritis and worrying about dementia. It's a sort of surrogate shifting family. Just there's always someone here that's got wide knowledge and kindness, from the first year it started till now. And they give you cherries to cheer you up :0) Like you I am better with talking online and this is a fab place for that. And the writing you have put up the last couple of days has been very valuable to me, so thankyou

 

Submitted by HarryC on

I'm glad if it's helped, Di.  Most of my focus has been on the NAS online community forums, where I read stories like mine and yours all the time.  There are people out there desperate for help, and no one seems to want to listen.  So... we find comfort and reassurance in our own numbers.

Poor parenting is so often used, and it's so sad and so wrong.  'There's nothing wrong with your child.  It's your fault.'  The ignorance out there - especially amongst so-called professionals - astounds me.  I won't go near mental health services any more.  They never helped me one bit.  Made me worse, if anything.  And when I was taking care of mum in her final months, her social services care manager astonished me with her incompetence.  She even got mum's medical conditions wrong on a report - and a month before she passed, she was talking about giving mum 'more independence back.'  It broke my heart.  Mum was desperate to do things for herself, as she always had.  It must be horrible to have to hand over everything to someone else.  But left alone, she would have died very quickly.  I fought a battle with social services, and my brother too - because he was believing what they said above what I said, as mum's principle carer.  And when she passed away, I didn't even get an acknowledgement from him.  Nothing.

Submitted by Di_Hard on

That's aweful! So you lost your Mum and got no comfort from your brother, no one to share and help. No wonder you fell, everything was so wrong. And now you are helping others, so they don't suffer how you did. Making something good come from all you had to put up with. And using your ability to articulate how you feel to get others to understand.

Social work is very scary. Once we got our son back, we put in a complaint. After pretending they hadn't received it (luckily it was recorded delivery though) the complaints were upheld. Though later a woman who worked at social work but wasn't on our case, saw her son waving to me. Later the school I was working at, helping out in her son's class, the Headmistres called me into her office to say this woman had asked her not to employ me and was going round the other parents telling them I wasn't safe. It sort of killed me. Luckily my son's school kindly gave me a job. But this woman complained to them, too. I don't know if that's why I can't work there anymore. The lady who looked into our complaint had told me to let her know if we had any more trouble with social work here, so I wrote to her about this. When I didn't hear anything back I rang. Someone said there was no record of my letter. I had not sent that one recorded delivery, so I gave up as I didn't want to make things hard for the school.

I wonder what social work is for sometimes, it's as though the things they are meant to do are a sort of inconvenience, or just too difficult. Much easier for form filling to make things up nice and tidy. Luckily I got a good psychologist who said I was a good parent. Though social work pretended that his report was unnavailable to show the Hearing, which surprised him. But he recommended our son be given back. They dragged it out as long as they could. They terrify me. Very brave and strong of you to stand up to them, you are a brilliant son

 

Submitted by HarryC on

I know some social workers and know how difficult the job is - and I'm glad there are people who are willing to do the work.  But I've seen the other side of it, too - as you have.  They're there to help, and sometimes they do the opposite.

Actually... my brother did make one acknowledgement.  Between us we had various expenses after mum passed away.  When everything was settled and done, we settled up.  The difference between what I'd spent and what he'd spent was £7.86: he'd spent that much more, so I owed it to him.  But he let me off it!  I'd spent seven months caring for our mum and keeping her alive.  I lost my job in the process.  I was with her 24/7, doing all the meals and meds, making the emergency calls, etc.  He came over once a week for about 40 minutes.  His wife came over every now and then - and all I got from her was criticism.  'That's a trip hazard.'  'Why is your mum eating that when she's diabetic?'  etc.  In the end, I blinded her with science because of my training - and she went away with her tail between her legs.  Since the end of it all, I haven't seen her or spoken to her again.  And it's such a relief!

Submitted by Di_Hard on

 

I think £7.86 for round the clock care and love for your Mum is something, looking back, your brother will come to see as the very least he could do. It was your time, a strengthened bond which he missed out on

 

Submitted by Rhiannonw on

Hi, Di, I don't know if this is meant to be private, but I noticed the link Insert had put on Harry's article, but now, clicking on Di_ Hard's blog at the bottom of your article, it says you have no entries on it!

Anyway, It was sad reading, and shows how complicated lives can become. Although analysing of conditions and difficulties and having a label to point to the particular difficulties can help in not feeling all is just failures, and can help others to try to understand a bit better, and oneself to concentrate sometimes on particular difficulties, yet, as Harry says, each person is so individual as well, whether they have AS or dyspraxia, or just a creative dreaminess that is forgetful of appointments and where belongings have been put!

You clearly have a strong intellect, are very observant and thoughtful regarding your surroundings and empathy with people. I have known some very kind and hardworking social workers. Society flings impossible demands of them, and ticking boxes and fear of repercussions can get in the way of common sense and love and real understanding of people. Similarly I think society can confuse parents, and leave some so afraid to reprimand or simple punishment to teach in love, that their children are left with no guidance and the situation boils into lashing out and hatred.

I can't imagine how your mother came to be as she seems to have been, but I guess one day she will realise how lonely she is, and how utterly confused.

Rhiannon

 

Submitted by Di_Hard on

Thankyou Rhiannon :0) You are always so wise! Mum was sent to boarding school with her younger sister when she was seven and her sister five. She hated it. I think it was in the War. I don't want her to be lonely, or guilty. I wish I didn't make her so angry