Winter HibernationĀ 

Christmas is the trickiest of times in our house. It is full of memories both good and bad. Love and loss in equal measures. J’s permanent placement with me happened a month before Christmas and although that will always evoke powerful memories we have reached a place where we are more comfortable with celebrating that anniversary. For all J’s family though this time of year will always have a sense of lack of safety and everyone needs a higher level of support to stay on track.

We love the sense of celebration and light within the darkness of winter. Living rurally makes us feel close to both the elements and nature.Nothing is quite as magical as watching mist settle in the frosty valley or a herd of deer in the nearby woods in December.

The excitement and pleasure of sharing quiet and quality time with family and friends is however tainted by those we miss. Christmas Eve was cruelly the day of J’s fathers funeral and in that moment two years ago the childlike wonder of ‘the night before Christmas’ was lost forever.

In order to cope with the dual (triple, quadruple) emotions that abound at this time of year we tend to baton down the hatches at the end of November. The weeks leading to Christmas are now a time we spend together enjoying peace and solitude and more than anything trying to count our blessings and remember that despite our difficulties we are lucky in both love and life.

We actively hibernate and become comfortably lazy. Our business is closed and aside from well planned shopping trips and visits with very familiar friends we spend much time lighting fires, playing with our many family pets and watching sentimental films that encourage acceptable and controlled weeping.

I’m sure there are many other families who feel the same as us and within our hibernation and headspace we send heartfelt winter wishes to you all.

Jazz Blog: Unconditional Love

The mother how had unconditional love for her girl but could not cope.

When I was first born I had some problems but we are not saw what. my mum
love me so much but could not cope because her mum had bereavement when my grandad died when he was 28. he was a fishmon ad he got kill by a bom at sea ad thats wear my famley trubble started.

then my mum got older ad get put in a children home ad she got sexley abrust. then she was home less ad she met dad ad it’s a bit of a weird one because he was a older man ad he had 4 kids.
he was in the army but then his wife died and then got with my mum. then they had my big Bro Michael and he died at berth. then Justin then one more miss caridge then me then my little brother Freddie. she found it hard because she had three kids 1 3 yearold 1 2 year old 1 year old ad she us to hit me ad I seam to rember her shouting at me then she was all over me ad it was a bit of a head fuck er.

Then I got put in to fosta home seprut to my brothers ad then mummy bear came ad then when I was 8 I got rey a nightid with my mum ad dad. then when I was 19 dad died ad I blame my mum because she was not very nice to my dad. well that how I fell ad now I have day dreams of killing her ad how nice that would fell like but then I fell so much love for her.

I some times fell that I wish it was my mum dead not dad I very very angry with her but I I’m a mums boy ad I fell so angry ad hate her so much because I us to get the shit end of the stick ad then she would be all sorry then angry again ad it’s left me not trust in her. ad skerd of her ad some time shit my self it might all kick off again.

this I think is what she thinks hey jazz i so sorry I love you I just had a shit time in my live I would not hert u u are my number one. ad this me think well its to late u stupid cow u should fort about that in the first place it’s to late I’m not for giving I wish you wear dead. mummy bear is my mum now u had your chance fuck of ad out of my live then I think no give her a chance I love her to much.
But mummy bear is my mum no one els.

This song is like how I feel

https://m.youtube.com/watch?v=Ra-Om7UMSJc

My Name Is Jazz: Triggers

So we call the things what set me off triggers and that anger is what we call the volcan over flowing

And what kind off things set me off r things like having flash backs seeing blood or clowns dreaming about my berth dad and seeing him as a clown or like I see him in the war or in danger and I cart save him because I haven’t got the power and he dies agin and agin and then he jump it’s at me as a clown and then I wack up in a fall mood which macks uther people mad with me and it a fishus sercull.

I keep it in and then I’m getting more and more angry as the day gets on then say we go out and I get even more trigger off then I will get home and start walking a round like a chimp

And then say sum one says sum think like just get a grip or macks lots of banning noise when cooking and I flip and start lasing out
And hitting or kikking them or spitting at them and I cart cam down for a long time.

If they say if don’t stop your phone or Xbox or lapping is not happing for a month that just winds me more and more and gets me more pisst off.

after I cam down we talk about the triggers and try 2 fix them but we all wound preface me to talk 2 them about the triggers frest and then the doors to the dogs can get un look and dogs cum out and we try 2 settle down but don’t get me rong it can tack 2 big kik offs 2 cam down but at the end off the day I don’t rally get angry much anymore because I talk about my fellings more and try not 2 let bad dreams get 2 me but sum times I cart and I fell rally said and hert and If peppel have also got angry facets when I moody it macks me fell even wers and it just winds me even more

I like to play lound music to get my anger out.

 

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My Name Is Jazz: Attachment And Security

Mummy bear is my bestis right hand girl
When I was a baby I was left quite a lot and if I’m left even for a mint now I panic and it gives me flash backs to mum leaving and fell like no one cares and they going to die or get mederd are hert them self and then I get silly and lash out and I chew a lot and say things I don’t men. my mummy bear is my life and she is like my body when I hear her Harte beet and I smell her it makes me fell safe and can be carm and my self and not fell pankey and I think some times wen I’m without mum I fell more like a tuff guy and I have to bee.

I rally don’t like Monday whenday Thursday firday because I don’t Like been in my own
And pitkley on a Monday because I fell more a wake and uther peppel are a wake and that pankis me because I fell temted to to wake them up and jump in with them because I love to fell uther pepels Harte beets and Abel to smell them and I’ve allwhys loved skin to skin baskley u could hold hands or head to head or bum to bum or leg to leg but it could be clashed as unappropriet and I hate I cart be clouse to peppel but the number one person I love to do that with is my best mate Erin or mum or my dog coco she is my staffie.

image

Wen mum is not hear my chest berns and it feel like a grate big war wood and when I see her it goes. she is like my drug like some peppel like weed or codeine or herring and when she is not hear I crafe her like I don’t no what so I chew more say and say things I don’t mean a some time atack peppel wich is mean but I some time crafing the moment with my mum I will just do Ey thing to see her she Is my right hand man and she is my onley person I would tell Ey thing to and I will have no shame of telling when it’s to do with some think rally bad and she is the oley person I don’t tell lies to or be dissobits to but some times she has to push me to the limited.

I crafe her kiss and her hugs all week and I think about 24 7 and I’m so sked she going to die or get merdond i totrters my self and I all ways say I don’t love my mum and I hite her but I love her more then my self and my uther firends and famley.

I some time think if my dad can die than mum will and it hertz so bad to the pont I some times hert my self on pepuss and atcley sick and shaky and That’s when I look up bad things and crave weed because I need some think to replace it and keep out of my head.

To this day I fell so qultey that she could just say right I’m going out for the night and see a fiend or some one I’m like one of the guys who are so psevive because I’m so sked she won’t come back.

But she went on holiday and left me for a frew days and I did rally well but don’t get me rong it was tuff and I love it at 6 on a Tuesday night and 11 on saturday morning because I so happy to be with her and fell supper safe we are like a married cuppel just with out the sex and songing lol

 

 

My Name Is Jazz: Hart Broken

On theĀ 15/12/1013Ā my berth dad was ent hear Ey more it was actuly the worts day of my life and the worts emosons I felt sick and rally rally sad.

I wasent very well and I was a sleep but when I work up mum sad jazz your dad is in hospital he’s got a bad chest infecson I couldn’t stop crying so we got my bedding and got in the car and went to hull hospital and I got thaer and mum said just remember he mite not rember u or he mite bee a sleep.

we got in the hospital and we got the news and I just berst into tears and then we ring my big brother and I never rally heard him cry hearing him cry is just brox my hart and i said to him one door close and a buffer Opens then we saw my berth mum.
Hearing her screming in my ears just brox my hart to and I couldnt
Fix it and that’s macks me fell even weers then mum and claudia and me and mummy bear went back to mine then the next day my friends waer hear andĀ we had hour Christmas do.
I just won’t to get as drunk as a posibal and wake up and it to be all burnt way but It dident. my fiends waer god sends.
They stuck by my side the hole time so did mummy bear and my very very very best friend Claudia.
And all of my famley crisrmast was shite. Some times I just one it to be a very long Hobail Deam. Ā I’ve had my sheild on a very long time but it’s time to be a popper man now and show how I rally fell. It Ā fells like I just got a rally hobbial grace on my chest and it raw and I haven’t got Ey skin on it and it’s fell likeĀ It’s getting better then it gets Rey open aging and it’s hobbial but I’m okay I’m tuff as shit lol and my saven grase is my to adouble staffies I love them.
But dong get me rong it would bee good to have dad than have the massive wund on my chest.

The end I love all my friends and famley xXx

Parents Not Spoken To Enough

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Having just watched BBC Oxford News to see the report on Connor Sparrowhawk’s death (manslaughter) I am overwhelmed at the thought of what it must be like to watch that as his Mum and Dad. No matter how seriously and gravely reported, it is still a news item for the day. Done and gone and finished for many viewers and so too it seems for Southern Health.

The headline that resonated particularly with me was ‘Parents not spoken to enough”.

This will not be an unfamiliar concept to many parents, whatever their story, who are united in trying to access health and social care for their children. Unfortunately it seems even more likely if your child has a learning disability and is going through the difficult transition into adulthood.

Through personal experience I know that to be treated like you are some incompetent fool is bad enough but for that attitude to lead to your family member becoming harmed is torturous.

I sat in many many meetings with gritted teeth and red hot cheeks as I was referred to as “mum” and my daughter discussed as if she were more known to the complete stranger considering her needs. The stranger who had not even seen a photograph of her let alone the many albums and films and artefacts that made up a full and rounded and joyful picture of what was her life and the family who loved her.

My daughter came to serious harm because I wasn’t listened to. In fact it was worse than that. I was observed, judged, assessed and written about in negative terms. After all what could be more difficult and outrageous for a professional manager than some pesky parent fighting for the safety of their child…..

The other blood boiling and potentially dangerous thing that happens is that your child is wrongly edited in assessments and reports. Only a parent knows the subtle nuances and messages in some children’s words and actions. It is the living with them year after year, loving them, caring for them, listening to them, knowing the non verbal cues that makes parents the experts. God only knows why we are not treated as such by professionals.

Connor would not have been put in grave danger and as a consequence die if his parents had been treated as the experts. They should have been talked to, listened to, respected, given the management responsibility over their sons care. And now that he has died Southern Health want Sara and her family to “move forward” and “move on”.

Of course now they will have to listen to the dreaded ” lessons have been learnt” get out clause statements which makes even the most unaffected member of the publics heart sink.

If they had learnt anything they wouldn’t use that phrase because they would know how jaded, hollow, crass and insulting it sounds.

They can’t learn because they can’t listen.

It’s Mothers Work

For many months now I have been following a blog by Sara Siobhan called “mydaftlife”. It is a blog that painfully unfolds to tell the harrowing and outrageous facts about how Sara’s amazing and healthy son LB was allowed to die in an assessment unit for adults with learning disabilities.

As a mother to a young adult diagnosed as learning disabled I have had to fight the system all the way. Even about whether she had any disability. Some thought her just plain “naughty” or me a ridiculous and incompetent mother. Her eventual diagnosis came so late in her childhood that her SEN educational support was practically nil and support to me in parenting her mainly punitive.

To many of us our children are not disabled, they are just who they are. Often amazing, intelligent, challenging and independent characters that others find difficult to pigeon hole. My daughter does not consider herself disabled or a slow learner, she is mortified and confused by the label. She believes its mainly the rest of us that are peculiar.

During her transition into adulthood, she like many teenagers, found life very challenging and as a result her behaviour expressed this. Suddenly my worth as a parent and her worth as a family member diminished. She was suddenly treated as an adult now responsible for her actions and I was no longer validated despite my extensive knowledge of her needs, individual likes and dislikes.

We are a large, close and happy family and are generally very creative in our problem solving on each others behalf. Because my daughters behaviour was becoming more aggressive and risky in public it was twice suggested to me, and to her in my absence, that she should go into an institutional setting.

The last suggestion discussed with her was an assessment centre for learning disabled adults. I voiced my horror and concern at the thought as television programmes, such as the one about Winterbourne View and all it portrayed, were quite fresh in my mind. I was reassured that things were different now. High standards of care etc etc. As it happens at the very last minute a family member stepped in financially to help me get some respite and a meaningful needs assessment from Family Futures. This private support bought me fighting time and my daughter is now living independently with the help of Direct Payments.

LB and his family represent the ones who have not been afforded this basic and very reasonable outcome. It is an outrage beyond measure that this tragedy happened to Sara and her family but as if this weren’t enough she has been subjected to torturous, disrespectful and cruel treatment by the health authority as a consequence.

We just wanted support to keep safe at home. We didn’t get it and we all paid the price in one way or another. My daughter came to serious harm but she didn’t die.

Many of us adopters will find we have children with at least “additional needs” even if we didn’t know at the beginning these needs will become apparent as time passes and our children don’t fit into the rigid systems provided to them.

Learning disabled children and adults deserve better support. Please share Sara’s story linked below with anyone you feel may be able to highlight the campaign for a cultural change.

http://mydaftlife.wordpress.com/2014/02/23/the-sound-of-candour/

Trust Issues And Resolutions

It’s was a funny old year 2013. There was more change than I could have imagined with Jazz finally getting funding to support her move towards independence as an adult. This of course meant that after being a constant carer for many years, under extreme circumstances, I had some of my own time back.

My initial thoughts were to use this time to take strident legal action on her behalf for the lack of post adoption support she received, the lack of support to keep her in school, the all round general dogs dinner the local authority made of listening to her needs and protecting us from harm. After a good think though, I knew it was far better to put that energy into creating something positive, something inspired by the strength of our relationship and the love rather than the regrets and the angry bits.

So we began the setting up of The Open Nest and the opening up of our experience to others. This took a lot of trust on Jazz and I’s part. Using blogging, Twitter and Facebook was something entirely new to us. Our lives laid bare, in some ways to illustrate and advocate for the fact that we knew we weren’t the only ones. Of course it soon became apparent that we weren’t and that trust was rewarded. We have met some wonderful people through Twitter who have supported and advised and been all round good guys in the setting up of the charity. They really represent the word “trustee” in the true sense of the word.

On the other hand 2013 highlighted the dangers in trusting people. Employing support people for Jazz has been so much harder than we could ever imagine and getting the wrong ones at times has had very negative emotional affects on her and her trust issues.

One of the most shocking things to happen last year was that a “friend” in the guise of supporting the charity, publicly raised funds in our name and then refused to give us the money. Even though I am old enough to know there are untrustworthy people around this really did make me question everything.

Whilst dealing with the aftermath of both losing a friend and a big chunk of faith, Jazz’s lovely birth dad Fred died. The timing was always going to be bad but ten days before Christmas was cruel. Life stuck the boot in further when the funeral was scheduled for Christmas Eve. The only saving grace was that it bought her and her siblings together. A lot of preparation was done before the funeral around healthy goodbyes and trusting those around her to keep her safe through the emotional storm of loss and death.

We were floored when at the funeral Fred’s older children from his first marriage had arranged the service to omit her and her brothers very existence. My heart broke as the service unfolded and Fred was remembered as a loyal and loving father to A, B, C and D but no mention of the three young people who sat huddled, clinging to each other in grief and humiliation. Their chance of a healthy goodbye was stolen from under our noses.

I knew the first family disapproved, with some good reason, of their fathers second wife ( she was asked not to attend the service to avoid trouble) but he loved her and his children. He spent many Christmas’s and birthdays with Jazz and my family and friends over the last ten years and took his parental role towards Jazz seriously despite her mums failings. We looked after him as he grew weak and we loved him. Again our faith and trust in human nature was dented.

In the past few weeks I’ve had to question myself, am I too trusting? am I naive? am I too soft? I even thought I needed to make serious resolutions for the New Year to harden up and not trust people so easily.

But then I thought…… “bugger that”.

I like being a trusting person. I like the openness our family has and the trust and honesty I believe I have encouraged in Jazz. I like being a big softy and having faith in human nature to do the right thing.

So my New Years resolution is the same as ever. In 2014 I will count my blessings and not let the bastards grind me down.

Goodbyes

My Name is Jazz

blog number 10

when I was little I got taken away from my mum and dad and got put in lots of different foster homes and my last foster dad died.

So when mummy bear came to my foster mums and tuck me home with her
it was hard for my mum to go out with her friends because she had me at five years old and I found it hard to let go because all the shit that happened before all got stuck into my head. I guess I was pretty fuck up i think I throat she was not coming back or getting rally drunk.

I all ways felt Guilty for that because it is porsesiv but I never meant it in that way.

when I was 18 as u all no I moved up to my new house and I went to get a tattoo for my mum and it also was for to to keep going and knowing the fact u have got to have hopes.

my new sport workers was starting and because he was a boy I was terfind because of what happens to me when I was 16. I thort he was going to be a rally horribel guy but he wasent.

But he dissent work with us Ey more and we got a new person but it hard for me because I fell I cart be my self yet because she a girl and I think like a boy and fell I have to impress her like a peecox or a cemelion.

this week has been rally hard because I had to say bay to my dog Madge and we war best friends and mum had to go to London. and its the first time I have said goodbye and it is the first great time I have coppt with goodbye or death on my on and I’m not saying it was easy because it wasnt at all. I cry for a hour and more but it was the kindist thing u could do.

my faveent saying at the moment is

bigger better stronger power

Madge and Me

Madge and Me