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.

My Name Is Jazz: My Work

Me At Work

 

I work at a animal recque place. I some time find it hard because it brings some fellings up like me been recque by mummy bear bear but I love it because it giving not tacking all the time. I all so find it hard because the animals have been mist triad so like I said it brings flash backs but my favour dog is Harry he is a staff+ Rocwrler+ German Shepard and he loves me and he likes going on long walks with me and he likes hugs and kiss.                                                                                                        But he is like me he dissent like his head been touch and cart have his water in with him because when I’m not ther he throws it a round the place lol! then there is Rusty he like to walk to. he is my second fav because he a staff+. Ridgeback and when he Duse a poo he spins around in serculls 3 time wich macks me laugh. he barks a lot then there is Tyson he is a Gary Hound he like to jump a round and pea up every thing. then there is Roma he is a lurcher. he is very cuddle and soft and ten ther is 7 ginny pigs but my fave is rusty and patch. patch is my best fav because he is inquisitive he like to explor and go in my hat and sit on my hear and be hold like a baby. Rusty like to be on his on like a popper man lol! then we got 3 geese and hens and ducks they do what birds do. then we got a blind goat. he got the foot and math desees and then 3 cats smokey Tom and stripey and finly 3/4 rabbits. I just love it

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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