Tag Archives: events

Leah Makes Sense of Her World

The whole family!

The whole family!

“Leah turned 5 in February and she has a diagnosis of severe global development delay, vision impairment, hypermobile joints and autistic features. When Leah learned to walk just before she turned 4, it was a magical moment for us.

Leah lives with me (mum- Michelle), Dad (Mike) and brother Ashton. I’m not going to lie, life is hard and we live on a emotional roller coaster that has, at times, really tested us.  Leah is our world and she has changed our life and made us better people, but having a child with additional needs is challenging in so many ways. It makes every aspect of family life harder.

Leah has no sense of danger, you could say she’s on a level with a 9 month/1 year old’s understanding and is into exploring the world. But as she is 5 years old and growing fast, it can be very challenging.

Where do I start trying to describe our beautiful girl who is a mystery to so many? You really have to step into Leah’s world to work it out! Anything sensory, music, eating, water, light up balls and throwing things and exploring are the things Leah loves to do. Leah has no play skills other than playing catch with us but even then she will throw the ball away from us – normally into a narrow corner somewhere that we can’t get to! Leah is non verbal and as yet we haven’t been able to find anyway to communicate. She is good at taking your hand though and leading you to where she would like to go.

Leah attends a amazing school in Poole. They have really helped us, along with other professionals, to understand her world. We have become experts in learning through the senses!

Michelle and Leah

Michelle and Leah

Leah is our beautiful girl who has shown us how to parent in a different way. Our son Ashton is fantastic with his sister and we are so proud of him. Sadly lots of times we can’t always be the parents he deserves and that makes us sad.

Leah often gets frustrated with not being able to communicate but has learnt that if she pinches us she gets a reaction so unfortunately we get a lot of this at present. Screaming is another behaviour she has adopted.

I have had some fantastic support from friends and family but sometimes life can be isolating as taking Leah to peoples houses and going out can be so challenging. It’s hard not think ahead and how much harder life will be so we try so we just try and stay in the  present.

We are currently trying to get support from social care to see if we can get some respite. It’s not something I thought we would never do but we need to be strong to care for Leah and getting some days to recharge are what we sadly need. Unfortunately I think it’s going to be hard as so many cuts have been made.

We are in the process of adapting our house. Leah can’t get up and down stairs and all the lifting has given me a bad back. We are also putting gates in place to block off kitchen as Leah’s exploring just isn’t the safe in kitchen.

Overall we are happy, apart from some days (we all have them). Leah has taught us all to look at life very differently and become more understanding people. Leah has developed more than I ever thought she would and we pray she will continue to improve”.

Written by Michelle, Leah’s Mum.

Michelle recently attended one of our advice clinics run by Regional Officer Lilly Fahey. We hold lots of information and advice events throughout the year. Keep an eye on our What’s On page for the latest events in your area.

Get Active for Cerebra

We have guaranteed places in some of the UK’s best runs so get active and join us today. From fun 5K’s to marathons, obstacle races and even races abroad. Join Team Cerebra and help us support families with children with brain conditions discover a better life together. We will provide you with:

  • Useful tips, support and resources to fundraise
  • A Cerebra running vest or t-shirt for those muddier challenges
  • A Facebook Cerebra running group to encourage one another and exchange tips
  • Meet and greet at selected events – and a cheer over the finish line!
  • Get involved and run for Cerebra!
  • And most importantly- unlimited email and phone support and advice from our fundraising events team

If you already have a place in a race and would like to fundraise for us, please click on the button below to register and we will send you your free running vest and any materials you need. This requires no minimum sponsorship – just raise as much as you can!

If you would like to book one of our guaranteed charity places please check out our categorised listings and click on the button below. Everyone can get involved with low-cost sign up fees and sensible pledges.


Spartan Race
Bournemouth Marathon Festival
Sheffield 10k 10K
Rough Runner
Half Marathons
Full Marathons
Obstacle Challenges
Search for a run by Region

Events – August 2015

EventsFree Anti-bullying workshops for parent carers
The first is in Leicester on 7 September 2015, then they are planned to take place in a number of venues around England until 30 November.  (Contact a Family and the Anti-Bullying Alliance).

Kidz Scotland
17 September 2015, Edinburgh.
Free exhibition dedicated to children and young adults with disabilities and special needs, (Disabled Living).

National Portage Association (NPA) conference
2 and 3 October 2015, Northampton.
Portage is a home-based educational support method for pre-school children with additional needs.

Events – Summer 2015

Kidz South
4 June 2015, Kidz South, Reading.
Free exhibition and presentations.

The Autism Show 2015
London 12 to 13 June; Birmingham 19 to 20 June; and Manchester, 26 to 27 June.
Showcasing the latest information, products and services. Includes talks, and one-to-one advice sessions. Tickets are at a reduced rate if booked in advance. (National Autistic Society).

Towards a Positive Future
18 June, London EC4.
Conference with speakers from therapeutic, legal and educational fields, Parents, £30. (Janet O’Keefe).

ADHD: early interventions and outcomes
Two days, 22-23 June, Leyland, Lancs.
Parents’ tickets, £45 for one day, £72 for both days. (ADDISS).

Move Forward
Free youth club for 13 to 18 year olds with Aspergers syndrome or high-functioning autism. Last Thursday of every month, Edgbaston 7.30pm-9.00pm, (Family Support section of Autism West Midlands. Booking required). The same organisation is also providing summer holiday activities at Belle Vue Youth Club, Shrewsbury, 22nd July to 27th August (Wednesdays and Thursdays 11am-4pm, £7.50 per session). There is also autism-friendly football coaching at Aston Football club, £2 per session, booking not necessary, 6.00pm to 7.00pm every Monday.

Autism West Midlands Activities
Among other activities for spring and summer, Autism West Midlands list parents’ lunches, Wednesbury 20 May, 17 June and 15 July, 12noon to 2pm (booking required); coffee mornings at Shrewsbury, Bridgenorth, Birmingham and Acocks Green (no booking); and advice sessions at Northfield and Birmingham.

Afasic Cymru free advocates training
Training for parents, carers and any other advocates of children and young people with speech, language and communication needs.  One three-hour session.  Sessions start in May 2015.

Events – March 2015

EventsSocial Skills
Teaching social skills to children and young people with autism or Asperger’s. One-day course, London 16 April 2015 (cost:  £55 for parents and carers), (Ambitious About Autism).

Naidex
28-30 April 2015, NEC Birmingham
Exhibition of products and techniques for independent living, moving and handling and other things that come under the heading of Occupational Therapy services, (free tickets in advance).

Polly Sweeney

Polly%20SweeneyEducation, Health and Care Plans: legal rights of disabled children under the Children and Families Act 2014

Affiliation: Associate solicitor at Irwin Mitchell LLP

Biography: Polly has experience in a broad range of public law practice, and specialises in community care, healthcare and medical treatment and education law (including representing parents at special educational needs and disability tribunals). She is also experienced in cases in the Court of Protection regarding mental capacity, best interests and deprivation of liberty, and is regularly instructed by the Official Solicitor to act on behalf of vulnerable adults on a range of health and welfare matters including capacity to marry or engage in sexual relations and disputes about contact and residence. She is involved in a number of pro bono initiatives and regularly delivers legal advice workshops to parents, carers and charities.

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Alison Thompson

Alison%20thumbnailAccessing Services: the view from a parent


Biography:
Alison Thompson is an author, speaker and mum to Daniel, who was diagnosed with ADHD when he was six. Frustrated with the lack of ADHD books written for parents in the UK, Alison wrote her own book, The Boy From Hell: Life with a Child with ADHD in 2013. Since then she has spoken at many events and conferences, and has written articles for Primary Times and SEN Magazine. Alison is the voluntary parent advisor for her local support group, ADHD Oxfordshire, and is currently training to be a coach, specialising in supporting parents and teachers who want to help ADHD children reach their full potential.

 

Professor Richard Hastings

Richard%20HastingsParents’ and service users’ experiences of challenging behaviour services

Affiliation: Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick

Biography: Richard Hastings is Professor of Psychology and Education and Cerebra Chair of Family Research in CEDAR at the University of Warwick. He carries out research on various topics in the field of learning disability and autism, including: psychological problems in children and adults with autism or learning disability, families, and educational interventions. Richard is a trustee for Mencap, the research advisor for Sibs (the UK charity for siblings of children with disabilities), and an external advisor for Ambitious about Autism.

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Professor Chris Oliver

Professor Chris OliverMeeting the needs of children with severe intellectual disability: From response to strategy

Affiliation: Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham

Biography: Chris Oliver is Professor of Neurodevelopmental Disorders at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders. He trained as a clinical psychologist at Edinburgh University before completing a PhD on self-injurious behaviour in people with intellectual disability at the Institute of Psychiatry, London. He is currently researching early intervention, behaviour disorders in people with severe intellectual disability and autism spectrum disorder, behavioural phenotypes in genetic syndromes and neuropsychological and behavioural assessment for people with severe intellectual disability. He has published over 100 peer reviewed articles in scientific journals, is Editor in Chief for the Journal of Intellectual Disability Research and serves on a number of scientific advisory committees for syndrome support groups.

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