Contact

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Please email me at

Bee@BreakfastTree.com

 

Please follow the link and sign my petition for ASD/PDA recognition by the Local Authorities and NHS Teams we deal with daily as parents. I am petitioning against the Parent-Blaming culture that is rampant amongst ‘Professionals’ and want to draw more attention to the actual impact their actions have on families

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https://www.change.org/p/alistair-burt-mp-nhs-social-services-understand-parents-of-autism-pda-pathological-demand-avoidance?recruiter=533936555&utm_source=share_petition&utm_medium=copylink

 

 

Feel free to contact me via the comments, or email me at

bee@breakfasttree.com

I’d love to hear your stories!
Best wishes

Bee

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2 thoughts on “Contact

  1. Hello Bee,

    I came across your site via the Wiltshire Aspergers Autism & Sensory Difficulties Parent Support Group on Facebook.
    I read through your article last night and it roused some strong emotions in me.
    I am the parent of a 7-year old daughter, Ella, who is on the Autistic Spectrum. I live with my family in Bristol.
    Although we haven’t had the same experience with the NHS as you and your family have, like you we have been very frustrated with the lack of quality services provided by the NHS in Bristol -from OT’s to paediatricians to Speech & Language Therapists. They have failed to deliver any value to us because they cannot implement a joined-up approach, they do not properly understand ASD’s and their egos, arrogance and misguided loyalties to the organisation they work for gets in the way all too often (And I have heard the same story from many other parents).
    The main reason for contacting you is to tell you that, about a year ago, we came across an organisation called The Family Hope Center (www.familyhopecenter.com) who offer individualised neuro-rehabilitation programs for brain-injured children (Autism, Asperger’s, Cerebral Palsy, Down Syndrome all being examples of brain injury as it manifests in children). They show parents how to take back control (when before there was helplessness) and run these individualised programs for their children at home.
    My wife Claire & I have been running their neuro-rehab program at home for our daughter Ella for the past 6 months and we have already seen some dramatic improvements in her behaviour and general engagement with life.
    Ella is sleeping better, is more compliant with routines and understands more. Her body is less tight and for the first time she is now coming to us for hugs and love that before she was disinterested in. We recently took our first holiday in seven years because Ella’s behaviour is now manageable in public spaces.
    The anger that I felt towards the NHS has dissipated somewhat and my perspective has changed over the past year. What the NHS needs is to be re-educated about ways in which they approach helping the growing numbers of UK children who have neurological conditions. I am on a mission to re-educate them. Many of their responses are fear-based and come from a place of mis-understanding.
    My comments above are not intended to dilute the anger that you continue to feel at the way you and your family have been treated by various NHS organisations and employees -if I had gone through your experience with the NHS I’d probably have got myself incarcerated by now!
    However I believe there is a way to fight back positively against the ignorance, egos & complacency that is currently endemic in the NHS -I call it the `quiet revolution`. To that end, I am organising events where parents can learn more about how to take back control of their child and empower themselves. I organised a successful event in North Bristol in June, for example.
    I would very much welcome the opportunity to speak to you more about neuro-rehabilitation programs and ways in which parent’s voices can be heard. Properly heard.
    I am also organising another event that will take place at the Wessex MS Therapy Centre in Warminster in the 3rd/4th week of September and this may be of interest to you and other Wiltshire-based parents whose local council `Special Needs Children’s Services` are currently failing them (I am aware of the Springfields Academy` debacle).
    My e-mail address is : melvyn.joyce@virgin.net. My landline is 0117 924 7992 and my mobile number is 07780 671236.
    I look forward to hearing from you and thank you for reading my message.

    Best wishes,

    Melvyn Joyce
    (Bristol parent)

    1. Hi, thank you for you long comment, however, I don’t know whether you are aware of the specific differences with PDA children compared to other Autism cases? Taking control of our children is not something that would work or would i want to work. We want him to be happy and in control of his own feelings. I feel that PDA strategies as suggested on PDASociety.org.uk are the best for helping our PDA children. I understand your comments re a ‘quiet revolution’ however, until you have had the threat of having your child removed by social services (which is what Child Protection is), there is no amount of being quiet or taking back control of a child that will help. A noise is now required, as this is happening throughout the country. PDA is not understood, or diagnosed by the NHS. They look to the parents for blame and it is damaging families. It is no good trying to take control of a child who is being removed from your care. The problem was never about the boy’s behaviour, it was that they couldn’t see it. The point of my website and my going public about it is to raise awareness of PDA and stop families being accused of fabricating or inducing illness when there is an ASD present, that they are unwilling to recognise. Thank you.

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