Inside Out (Trauma Stylee)

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Anxiety is some think in body that sets your heart rate up. what happens to me when I’m anxious is I talk to much I smoke to much and I get hevery breathing nd I start shaking nd I wet my self a lot nd I get less hungry nd I go rally clingy to mummy bear nd anxiety can lead to panic attacks wich r hobble.

Anger is hobble felling it eats u up. what I get when I’m angry I get rally coxey nd pushey nd I do Lounds of wate liffding nd I play rally angry music nd I put on a voise so no one comes near me nd I have day dreams about slashing my arms up nd shaving all my hire off nd I get rally rude nd I over play music.

Sadness is all so hobble. I get like rally sad nd I cart deal with to much talk nd I rally don’t like been over told off nd I hate eye contact then I don’t like to much body contact nd I just won’t to bee on my own nd put my head phoes on beause I fell like I’m pee of shit nd I get rally bad nd hobble thorts like blood nd clowns nd killing people nd all so cuting my self so I get a buzz nd kick out of it

Joy is happy what I’m like I’m quite funny loving nd huggy nd help full

Love well thay Lound s of different love but in love it’s hobble beause u cart think of ey thing els no one els separate the person how u in love with. when I fell that I get inprot with my sport works nd I get sexist nd I get moody nd I get all sex up nd try waching porn nd play love songs nd I day dream a lot.

Fear is wear u r skerd. what I’m like I get rally skerd about going out in the car nd doing stuff nd I’m all ways skerd mummy bear going to fall down the seras nd hert her self or die nd when I’m skerd I poo or wet my self nd I get rally clingy with mummy bear

Embarrassment Is wear u get embarrassed about some thing so like u see some one how u fancy nd thay give u complmnt about how u look or your mum said some think in basing or dad. I get like I get argent nd put on tuff man voise nd I walk the chimp nd I go red or I just don’t say ey thing

Shining Stars In The Dark

imageOur attempts to get professional support after adoption have been at times soul destroying. The wrong help has made things worse and the intimated blaming of our care skills regular. At times the ‘support’ has been extremely ignorant and damaging. Over fifteen years however there have been some guiding lights who helped us to hang on against the odds and soothed the difficulties, sometimes by simply offering kind words and empathy.

In order of appearance here are the professionals who made a difference and whom we will never forget;

Lindsey The Adoption Social Worker

Lindsey tried her very hardest to put support in from the beginning of the difficulties in the placement. She wrote letters to managers, sent me information on courses, highlighted the false economy of leaving us to struggle. At one point she put us on the waiting list for intensive attachment therapy. Lindsey was aware (even though at this stage I wasn’t ) that the court papers freeing Jazz for adoption stated that we would need “expert psychological support around attachment issues”. The help was never given the green light from managers and two counties argued over who was financially responsible. For us it was like someone was saying this is what you need to survive but you can’t have it. Lindsey was suddenly moved on from our case without us being informed. The fact she believed me at the start of our journey meant everything and helped me to stand steadfast in our quest for the right support.

Patricia The Psychologist

Patricia was bought in to speak to us as Jazz was failing to remain in school number two. It was a one off consultation in the very early years and didn’t lead to support as lots of beffudling arguing was taking place about Jazz’s SEN status. Patricia reassured me and said “if Jazz never goes to school it won’t be the end of the world. The most important issue is her attachment to you so don’t panic about education, that can come later” Of course it wasn’t ideal that Jazz was being excluded rather than included at school but Patricia gave me the confidence to follow my gut feelings and eventually home educate.

Bill The Head Teacher

Bill was a radical thinker at Jazz’s third school. He allowed her to be freestyle and as an unconditional treat at the end of the day he would roller blade around the corridors with her. Even though his school was a ‘special’ school they couldn’t hold onto her for long. The vulnerability of some of the other pupils who were severely physically disabled made Jazz’s exuberant behaviour dangerous at times. Bill made sure another exclusion didn’t go on the record. He gently and kindly arranged the leaving and took her, her first boyfriend and her TA for a forest walk and pub lunch with his wife. Jazz has never forgotten his kindness.

Sharon The Teaching Assistant

Under the leadership of Bill, Sharon managed to keep Jazz safe and happy in a very difficult environment. Professional capability was mixed with genuine care and although it may be frowned upon in some circles, actual love. Sharon was tested to the limit most days. A Jazz favourite at this school would be to escape the classroom, run down the corridor and jump fully clothed into the therapeutic swimming pool. Despite only working with her for what amounted to a few months Sharon remains in touch with Jazz to this day.

Tracey The Teacher

Tracey was class teacher in school number four. Despite being managed by what I can only describe as ‘The Miss Trunchbull’ style of headship, she saw only good in Jazz. She couldn’t stop the inevitable exclusions and eventual permanent leaving but in the short time she taught Jazz she showed nothing but warmth towards her. Tracey was a Christian woman in the true sense of the word. We have several photos she took of Jazz in school and these stand as a rare pictorial history of inclusion for Jazz. Pictures of her actually in a classroom with other children and not a side room where in reality she spent most of her time.

Geraldine The DDP Therapist

When the school possibilities completely ran out Geraldine became our anchor for eight years. Between the ages of ten and eighteen she saw Jazz and I for an hour a month. It was nowhere near enough only amounting to approx ten hours a year, but her hands were tied by the usual frustrating and shortsighted funding issues. This hour was spent doing dyadic developmental psychology techniques with us. In lay mans terms this meant doing attachment therapy with us. Geraldine never doubted me or Jazz and as the years passed we became a team, the three of us working towards the best we could. On numerous occasions, during countless crisis moments, she would write letters to other professionals stating our urgent need for support. Shockingly despite her wealth of experience and professional status in the NHS she was not listened to. She had to witness some terrible car crash moments in our lives and this cannot have been easy for her at all. I am absolutely convinced that were we given funding for weekly sessions from the start some of the terrible things we experienced would have been avoided. What we did have however was a trusted friend who nurtured our self esteem and gave us hope to carry on. Geraldine has now left the NHS and is a trainer alongside Dan Hughes to other practitioners of DDP. She uses film of our sessions to teach others which makes us feel proud of what we have achieved together against the odds. Since we have set up our charity she has given us nothing but support, encouragement and help.

 

So there they are, six people out of what must be over a hundred professionals we have seen in the last fifteen years. I guess what counts most is the quality rather than the quantity. It also highlights to me that in giving post adoption support it is not always about fixing a problem. It is about being empathic and kind and listening and trusting families to know themselves. As those things don’t cost anything and yet help people to have hope and carry on, perhaps there is something to be said for the true values of caring and even love in what has become the confusing, grinding, impersonal and budget driven caring industry.

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/

Solutions

I know we at ‘The Trauma Train’ are not always known as blogging about the happier sides of adoption, but we always try to let the love and truth of our family life shine through. The truth is not always easy or pretty but it’s our truth and we feel it has beauty in its imperfections.
I suppose adopting and fostering has made us very passionate about the rights of adoptees and adoption support, as it has other adoption bloggers who share their stories warts and all.

I want this post to be one that shows the solutions we have found during our own personal experiences over the past fifteen years. This is in the hope of offering positive and creative support to other who are dealing with issues of anxiety, attachment, trauma and developmental delay. 2014 is the year we begin to deliver our support services through the charity http://www.theopennest.co.uk
We are working with adoptees, adopters, foster carers, psychologists and social workers to develop the services we offer so please share your thoughts and ideas with us.

PROBLEM: I know my child cannot help their current struggles but I am exhausted and just need a break. Standard respite services would not suit my family as my child would be very anxious if sent away from me at this stage.

OPEN NEST SOLUTION: We will be offering short breaks in beautiful Whitby, North Yorkshire. There will be a choice of a comfortable rural camping barn with room for four or a three bedroomed apartment in a town centre hotel. Parent/parents will come with children but get whole days or evenings off whilst children are cared for and entertained by expert carers who understand the specific issues.

PROBLEM: I have been assessed as needing support but there is nothing suitable forthcoming and I feel it is down to funding and availability.

OPEN NEST SOLUTION: Short breaks and other services will be free and funded by our charity. Those who feel able to contribute to the costs of their respite or support can support us with a donation ( We will trust people to assess this themselves).

PROBLEM: My child has contact with birth family members but I wish it could be in a more neutral, private and safe space.

OPEN NEST SOLUTION: We can offer 20 acres of beautiful National Park as well as beautiful indoor spaces to families who wish to have contact with siblings or birth parents.

PROBLEM: My child finds a lot of situations difficult but professionals do not always believe me or fully understand and this triggers my child. I feel am not listened to as I’m “just the parent” and I don’t have the time or energy to battle the system.

OPEN NEST SOLUTION: We offer a free advocacy service for families. We will contact agencies, schools etc for you with positive information and literature that will help your individual child. We can also send you literature to give to teachers, social workers, family members etc. We can also advise on potential benefits and legislation. We can be assertive on your behalf and can contact local MP’s.

PROBLEM: Sometimes I just need someone to talk to who has “been there”

OPEN NEST SOLUTION: We will have a confidential telephone helpline for those who need to chat through an issue, moan, cry, laugh or be directed to other appropriate support agencies or individuals.

PROBLEM: I would love to meet with other adoptive families in a safe space.

OPEN NEST SOLUTION: We will organise small short break social gatherings (up to 22 people) for adoptive families. These will be free of charge including accommodation and food. There will be activities for children facilitated by expert sessional workers. There will be options to do “grown up” activities for parents/carers.

PROBLEM: I would like to attend a conference specifically for information, support and learning around adoption but cannot afford the cost of a ticket.

OPEN NEST SOLUTION: We will be hosting an annual conference for adoptees and adopters. The conference delivery will be dynamic and original and will be strictly delivered by adoptees and adopters. Attendance will be free (as in all our service provision a donation can be given if appropriate). There will be child care if it is needed for accessibility.

PROBLEM: My child’s violence has reached a level that makes me scared that I may not be able to cope anymore and our adoption may break down.

OPEN NEST SOLUTION: We can fund and facilitate specific in house training for individual families in crisis. This training will address issues of behaviour management for your individual child and safety strategies. The training will be delivered by a recognised National provider who is expert at conflict management.

PROBLEM: It upsets me that me and/or my family is not reflected or represented truthfully in cultural arenas.

OPEN NEST SOLUTION: We will be facilitating and hosting cultural events, with National coverage, where the “voice” of the adoptee and adopter are represented over and above the agenda of any other group. We also aim to support other projects and individuals with this aim.

The Open Nest currently raises the largest part of its funds by selling holidays to the general public at http://www.larosa.co.uk @LaRosaHotel
Our family set up this vintage hotel and campsite business ten years ago to address the issue that due to our difficulties in dealing with trauma it was hard for any of us to fit into mainstream employment or educational settings. We are now able to use this business which has a loyal customer base to support others.

A proportion of our sales go directly to fund post adoption services. This independent fund raising allows us to be creative and means service users are not at the mercy of assessments or funding shortages before accessing support.

We also organise smaller fundraising events and very much appreciate others who do the same for us. We are a registered charity and this year will become a registered adoption support agency.

Anybody who wishes to fund raise for us, share advice or ideas, or would like to be on our mailing list please contact us at info@theopennest.co.uk

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Loss

imageWhen Jazz first came to live with me her brother was in a children’s home. He was only seven and was housed far away from his family and friends. We would regularly go to see him at the home and take him out for the day. After some negotiating with Social Services he was allowed to come and stay with us for weekends.

The visits were very special and for the time we spent together the children seemed happy and relaxed in each others company. When it came to say goodbye however, emotions would rise and tantrums and tears would begin. It was completely understandable but tricky to manage.  Jazz would beg me to bring her brother home with us and he would storm off refusing to say goodbye.

The long two hour drive home across the Pennines was sad and often spent trying in the best way possible to explain the emotions of the situation to a six year old.

After a few visits her brother gave her his favourite toy to take home with her. It was a soft toy Barney the dinosaur. Between them they set up this system where each one would take it in turns to keep it after the visit. Backwards and forwards it went providing a manifestation of the unwritten connection they held. It seemed to ease the pain, knowing because Barney was involved they would definitely see each other again.

“I love you, you love me, we’re a happy family”

The Barney mantra became stuck in their heads and repeated over and over. At times I have to admit it drove me crazy.

As time went on they even felt brave enough to let each other keep Barney for an extra period of time.

Jazz’s brother was moved to another three homes between the ages of seven and twelve, but the routine continued.

At the last home he was in before coming to live with us permanently, a  young member of the care staff who had known him but weeks decided it was time to “sort out his room”.

Without his permission a bin bag of his things were taken to the charity shop because they were considered “too childish”.

Barney the family heirloom that connected them for years was lost forever.

Post Adoption Support….I May Eat My Hat!

It’s fourteen years next month since we adopted each other. It’s been an epic journey and it certainly continues to be so. During this time I have been an avid follower of all things political, media related and policy making around adoption. I’ve watched and listened, contributed and written to MP’s. All this alongside just trying my best to have some semblance of a healthy and secure existence for my daughter.

I have never felt she was ‘owned’ by me just because she was in my longterm care, and yet when she needed support post adoption, the general response to our desperate need for help was that she was very much ‘mine’. This constant misunderstanding of her needs by our local authority, as well as her placing authority, struck me as horribly ironic. The state intervened in her birth family as her learning disabled mother sadly could not care for her and without having any support was severely and cruelly neglecting her needs. I can’t believe that nobody professional we met understood the ‘double whammy’ nature of this, and how a person full of rage due to displacement followed by further neglect of their needs was ever going to heal and thrive without great support, let alone the neglect being by those who purport to, and are paid to care.

Of course I did what most adopters do and tooled myself up, trained by Dan Hughes, read Caroline Archer and the like, applied to get help from charities such as Family Futures and Adoption UK. We even latterly attended a pitiful and run down CAMHS. We got nothing really solid, regular enough or meaningful enough and I essentially became an amateur psychologist as well as a teacher and a mum. All very well, but at what cost to my daughter? I can honestly say that the most stress caused to us was by the constant ignoring or misinterpretation of my begging for help. It felt like cruelty to us both. I’m sure we may have been the ‘complex’ case we were described as, but I knew what we needed and I know it wasn’t too much to ask. The rubbish assessment processes, mismanaged meetings, unaware social workers and budget conscious managers took up all the funding we might have had.

My original assessment as a suitable adopter was clear in its positive reporting that as a previously qualified social worker, I would be able to successfully identify a child’s needs and ask for appropriate support. That would seem laughable now if it wasn’t so sad.

So back to today. I feel as an adoptive parent I should be celebrating the Governments announcement for funding to support adoptive families. After all I am so galvanised by our experiences that I have formed a charity to try and help others with free post adoption support. (There is no catch, we will listen and we will believe and we will understand) The funding will come from myself and other volunteers fund raising, no big charity boss salaries.

My daughter is now an adult and living with support in her own home. I could go back to work to pay off the huge debts I incurred as a single parent unable to work, I could finally do my MA that I was due to start fourteen years ago, I could quite frankly laze about for at least a year to recharge my very worn out batteries, but I can’t because I feel so passionate. I feel very strongly that maybe our small contribution might mean a small amount of traumatised children might not be ignored and unsupported to the point that they are unable to remain safely in their second family. Maybe some adoptive parents might feel they got a meaningful and empathic support response that didn’t have a price tag. Maybe our creative, user led, non profit approach might be considered good practice by those who hold the power and we won’t be seen as “just mothers” playing at the big boys game. We can but try.

Sadly my experience tells me that the Governments recent announcement is not very ‘charitable’ and may amount to a political sticking plaster on a gaping wound. There are hundreds of children and parents out there now who need urgent support. They can’t wait for years to see if pilot schemes work for the lucky ones. £20 million may seem a lot, but its nothing when specialist therapeutic professionals can charge up to £1000 for a days staff training, £3000 for a detailed assessment, £100-£300 per hour for therapy, and a specialist therapeutic programme costs approx £30,000 per family per year if your child is developmentally traumatised. Some of our children have sadly become big money clients in all this.

(As an aside, a news item I saw this week whilst thinking of creative solutions to care was applauding the creative skills of the British and how we export our creativity successfully. This was in the context that the development of the new Grand Theft Auto game was done in Scotland. The cost of that creative development for a game which encourages crime and violence was £175 million).

If we like it or not, fostering and adoption make money, wether its saving money in the case of adoption over fostering, or simply in private agencies gaining fees to fund their jobs in the care ‘industry’. The National Fostering Agency was sold last year for approx £130 million. Private adoption agencies make money and the average fee gained for placing a child with an adoptive family is £27,000. Support agencies make profit.  It’s reportedly been tough for the smaller agencies to survive with prospective adopters low in numbers, hence the Governments recent financial assistance to help them make more “sales”. I know being professional and skilled deserves and needs payment, but not the expense of those one is in the business of supposedly helping.

At the moment I can see some current and existing services developing to gain potential post adoption support fund budgets. Of these, many will of course be well intended, creative, value for money, accessible to all and excellent, but some people can see money making opportunities. It makes me worried that once again, the people at the low end of the adoption food chain might be children

Apologies for my cynicism and if I am proved wrong by amazing, enshrined in law, support to all adoptees and their families (including kin) in the near future……meaningful and quick assessments of need, free therapy, quality identity and life story work, empathic fair access to education, specialist training and respite for parents and support to adoptees post eighteen……..I’ll eat my (very fashionable) hat.

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