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How can you make a difference?
This document discusses the experiences and perspectives of a parent caring for a child with autism. It describes the challenges of navigating education and support services to meet the child's needs and achieve life outcomes. Key points include: the lack of coordination between education and other services; the importance of person-centered planning in focusing on strengths and aspirations; and the need for empowering information and resources to allow families to remain in control of support for their children. The parent's experience shows how person-centered planning helped their son progress from isolation to independent living.
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How can you make a difference?
- 1. How can youmake a difference? I would like to bring a Parent carer’s perspective to this TLAP Networking day around personalisation for Children, their families & Young People
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- 6. Autism was likea curtain coming down…
- 7. This always broughtcomfort..
- 8. Why is italways groundhog day for us? This was our reality. Shaun would return from school, strip off, wrap himself in newspaper and rock for hours. The school said “ We don’t get this behaviour here, but the day is very full/structured, he has to unwind somewhere” • Too often schools say it is not their job to ensure the skills learned in school are successfully transferred to a pupil’s home and community environment. They deliver to Ofsted standards and the National targets given them. • Then my question is “What is Education for if it is not to enable every individual to achieve their greatest potential?” If for my son that is to achieve a basic quality of life, then his curriculum should deliver it
- 9. Back then..I feltthat I had lost everything… My identity had dramatically changed from that of a vibrant, spontaneous young woman of 22, to an empty shell, in a matter of 4yrs.. I felt that I had lost my family my friends, my work life… even the intimacy of my marriage.
- 10. That world outthere.. the one that we had enjoyed in such a care free manner before with you… had suddenly become so intolerant! And we didn’t know enough or have the confidence to make any decisions.. Then Services took over…
- 11. Assessment followed assessment… Education,Health, Social Services and DLA.. Only required of us to list in ‘detail’ every difficulty, Dysfunction and inadequacy our family had.. No one seemed to be interested in the rare gems of happiness we had when we achieved.. what would seem to most, the simplest of tasks successfully! Our lives were no longer ours!!
- 12. Sometimes parent carersappear aggressive, never satisfied..!
- 13. Where has thismisunderstanding come from.. are we that different? • We, like most of you.. Dreamt of footie on the Rec and picnics in the park… • We, like most of you .. Have worked tirelessly to ensure our children get the best start in life.. • We, like most of you.. Have life long aspirations for our children.. But this alas is where the similarities end…. because for Parent carers.. without the right support from you we cannot achieve the simplest of dreams
- 14. Information.. Information.. Information..! We thoughtthe answer lay in our ignorance.. so we searched high and low for answers.. We cast our net as widely as we could. Asking every professional we had contact with for more info..! They kindly obliged.. to the point were our brains were numb.. unable to take it all in.. Finding the nuggets of wisdom we needed amongst all the websites, books & leaflets when you’re tired and totally with out focus became impossible
- 15. It wasn’t untilI was introduced to Person centred planning - PCP
- 16. that it allbecome clear.. At last we had been given a tool that changed our lives It enabled us to build a wonderful picture of our situation ‘Yes it showed the crippling daily routines that had plagued us for years, but it also enabled us to hold on to the rare moments when things were going right and use that positive approach in other areas of our life. Crucially, the positive aspirations within the plan at last helped us to separate the ‘negativity’ that was required of me whilst filing in assessment forms - from the enduring belief we had that he could achieve great things We were able to ask for specific information and resources from specific professionals to address the barrier we’d identified to achieving each of our life outcomes
- 17. • We stillstruggled getting the school to recognise they were part of a team alongside us and our social care support . • We struggled to get them to acknowledge our PCP outcomes and see their role in achieving them as an integrated part of the curriculum • Annual Reviews seemed to us solely educational progress against national targets and reviewing the statement status. Worlds apart .. that we believe we changed our special school’s approach to annual reviews in a positive direction back then – they had at last ‘bought into’ our life outcomes It was by personally bringing into our son’s review the person centred element (by talking about the progress we had made by using a DP for our respite) and how we'd taken those ‘abstract curriculum skills' and were ‘checking their transferability’ into his community setting.. (Giving feeding back to the school on strengths & weaknesses by video, so they could adjust IEP)
- 18. When considering aservice we are looking for: • A service that allows us to remain in control • That listens and works towards our outcomes • Engages with us as partners • Flexible, Adaptable, Responsive • Reduces the impact of caring (picks up the baton) • Works in partnership with the other services in our lives • Innovative – Assistive technology, resources for home • Believe in my son’s future and his right to have a good life in his local community • Enabling- tapered approach* to reduce dependency • Community connecting to facilitate relationship and belonging
- 19. Information we receiveneeds to be: • Timely • Relevant • Small focused chunks • Meaningful • Practical tools • Effective • Empowering • Accompanied by the resources and training to use it effectively
- 20. What I’d likethis network to achieve • Families & YP need empowering through PCP to enable them to gain and remain in control of their family lives and begin to focus on what it is that they really want from the services around them With a ‘Plan’ in place.. they are able to: • Own their lives and take back responsibility for their futures • Celebrate their strengths • Identify the barriers and their areas of need • Can choose the outcomes they want to work towards Partnership working with the services around them Because they can be specific about the outcome and therefore the information and support they want from services: • They are more focused about the type of support and resources they need and are more motivated to ‘buying into’ their own learning * • Be clear enough to negotiate/ insist on practical and meaningful services that are addressing their barriers and achieving those outcomes
- 21. With tools andresources available to us.. Timely focused information when we needed it.. With personalised coordinated support from all the services around us and organisations like you.. Driven by our EHC plan outcomes.. Services can share in the success!
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- 23. To a happyyoung adult..
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- 26. Independent in hisown home
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