Photo by Jackie M., with thanks.
Photo by Jackie M., with thanks.
This webpage is especially intended for anyone who has recently given birth to a child with Down’s syndrome (or other disabilities) as a ray of hope that anything is possible, with the will.
My daughter (name intentionally omitted to protect privacy) was born in 1980 with Down’s syndrome and major heart defects (Fallot's tetralogy, with an additional hole). In 1985 she was fortunate enough to be referred to Dr. Roxane McKay, a brilliant and compassionate Canadian heart surgeon who was willing to give my daughter a chance, and miraculously corrected all defects; to her we shall be eternally grateful as without her my daughter would not be here today. There was also a moderate hearing loss requiring hearing aids during school years, though trivial compared to everything else.
Aware that my daughter's potential would be better reached through a stimulating home environment, I taught her to read and write during her pre-school years and later provided her with various meaningful extra-curricular activities: Brownies, piano, violin, swimming, ballet and gymnastic lessons. I also underwent two major battles in 1984-6 and 1992 with two separate local education authorities (LEAs) for her rightful inclusion into mainstream schools. The battles were particularly challenging and attracted much media attention because she would have been the first child with Down's syndrome to enter the authorities' mainstream schools, which would have set a precedent for other children with Down's syndrome to follow. Despite both LEAs' insistence that her needs would be better met at special school (and their dismissal of unanimous professional advice recommending mainstream), her inclusion into mainstream primary and secondary schools proved to be very successful, and many other children with Down's syndrome did indeed follow.
I should stress that winning those battles was only made possible through the dedicated support of certain people and organizations. Richard Jones, educational advisor of the Down’s Syndrome Association, made possible a successful appeal after the first two-year battle for our daughter's inclusion into primary school, and IPSEA (Independent Panel for Special Education Advice), particularly Katy Simmons, supported us through thick and thin during our second battle for transition from primary into secondary school. Other organizations that I found very supportive and informative are listed below under 'Links', particularly ACE, CSIE and Network 81.
Since leaving school my daughter continues to enjoy a full and active life. Over the years she has done various voluntary work in charity shops, a care group, a hospital and a resource centre. She attends line dancing, swimming and gym several times a week, plays violin and piano daily (videos below) including to elderly care home residents, attends her weekly training orchestra and music lessons, is a member of a walking group, an avid reader (a Harry Potter fan), has good computer skills, enjoys karaoke, Wii Sport and dance, listening to music, watching TV and so much more! I believe that this level of achievement boils down to expectations and how they have dramatically risen since the days when people with Down's syndrome weren't even expected to read their own name, let alone attempt a fraction of what many people with Down's syndrome achieve today.
Exceeding expectations
1) Receiving award for violin recital, 1997 2) Line dancing, 2003
3) Practising piano, 2005 4) Playing violin with Special Virtuosi Orchestra at Royal Northern College of Music, Nov 2007
The following three videos were recorded at the Royal Northern College of Music, June 2009
Violin Solo - Can You Feel the Love Tonight
Piano Solo - Humoresque
Special Virtuosi ~ Raiders of Lost Ark
The following 2 videos were recorded at Melody Show Case concert in Birmingham, July 2007.
With grateful thanks to her music teachers and line dancing instructors for teaching her these
skills.
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Special Needs Links
My Communication Accommodation Theory PowerPoint presentation (best viewed in Slideshow) examines how we accommodate our communication to one another to become more alike or by defining our differences, our motivations for doing so and the consequences. With sincere thanks to Howard Giles (founder of the theory) for supporting me on this one.
GMDSA (Greater Manchester branch of the Down's Syndrome Association) A charity status parent led support group which provides information for parents, carers and professionals on all matters concerning Down's syndrome.
Advisory Centre for Education (ACE) - an independent advice centre offering information about state education in England and Wales for 5-16 year olds. Offers free telephone advice on, e.g. exclusion from school, bullying, special educational needs and school admission appeals.
AUTISM Independent UK
British Association of Teachers of the Deaf (BATOD)
British Dyslexia Association (BDA)
Centre for Studies on Inclusive Education (CSIE) An independent centre working in the UK and overseas to promote inclusion and end segregation.
Down’s Syndrome Association - our first port of call after giving birth to a child with Down's syndrome
Epilepsy Action
Independent Panel for Special Education Advice (IPSEA) ( of which I was formerly trustee) - a national charity which offers free and independent advice on Local Education Authorities' legal duties to assess and provide for children with special educational needs.
Kaufman Children's Center for Speech and Language Disorders
Makaton Vocabulary Development Project - Makaton is a unique language programme offering a structured, multi-modal approach for the teaching of communication, language and literacy skills, devised for children and adults with a variety of communication and learning disabilities.
MENCAP - Works to gain support, education, housing, jobs, and recreational opportunities for people with learning disabilities.
Muscular Dystropy - UK charity - one of the best online sources of information on the disease with over 700 pages.
Network 81 - A national network of parents of children with special educational needs working towards properly resourced inclusive education.
SCOPE - about cerebral palsy for disabled people achieving equality
Widget software - 'Writing With Symbols' for special educational needs. Designed to develop literacy using pictures, symbols and words. Useful for creating learning resources such as flashcards and Bingo cards.
General Education LinksABCTeach - free printable worksheets and more
Basic Skills Agency (BSA) - caters for early-years to adults
BBC Schools - caters for ages 4-16
BBC Skillswise - aims to help adults improve their reading, writing and maths skills
Curriculum Online (COL)
EdHelper - teaching resources
FENTO Further Educational National Training Organisation
Kids Writing About
Learn Direct - a network of online learning and information services
Learning and Skills Council - LSC is responsible for funding and planning education and training for over 16s in England.
Move On - encourages adults to improve English and maths skills and achieve national qualifications at Levels 1 and 2.
National Curriculum - for every subject and Key Stage
School Discovery.com - for parents, teachers and students
Teacher’s Pet - software and Resource Search Tool for creating classroom exercises
TeacherNet - developed by the DES as a teacher resource
Tooter 4 Kids - for teachers, kids, parents, student teachers and home schooling.
Virtual Teacher Centre
I would appreciate if you would kindly notify me of any broken or outdated links. Many thanks.
Julia ~ Manchesterenglishtutor.co.uk
Webpage created July 2004. Last updated March 2012