Rare Disease Day: How Dan’s rare disease didn’t stop his mainstream education

facebook-profileRare Disease Day is at the end of February, with the theme ‘Disorders without Borders’. In Europe it’s coordinated by EURORDIS, the European Rare Diseases Organisation.

Many children have special needs because of a rare disease that may present extreme difficulties with being included in mainstream education. Many others, however, whose condition is physical and not a learning disability, simply need support to help them manage the classroom environment on a practical level.

One person such as this is Dan Copeland. I met Dan through my work with DysNet Limb Difference Network. Dan has TAR Syndrome and was only the 18th person recorded in the UK with the disorder. Despite his physical difficulties, Dan, from Liverpool, impressed me with his cheerfulness, humour and can-do attitude.

Dan, now 23, is a student and works part-time as a DJ. Below is the first part of his story, with a link through to the remainder that’s hosted on the RareConnect DysNet rare disease community.

***

Dan Copeland

Dan Copeland

My name is Daniel Copeland and I have a very rare syndrome called TAR syndrome which is short for Thrombocytopenia with Absent Radius.

This means I have a low platelet count which causes me to bruise and bleed more frequently and when my blood count is low it causes me to catch viruses more easily than others. I also have no radius bone in my forearm, the rare thing with this is the fact in most genetic cases if the radius is not present then neither is the thumb. But with TAR there is a thumb, although the tendons and ligaments are connected to the ulna bone which causes the wrists of the affected to be turned inwards.
As so little was known about my syndrome as a child, initial diagnoses from knee and hand specialists were not good, telling my parents I would be unable to do basic things from feeding myself to dressing myself. When I was due to start nursery and primary school, the boards were trying to push my parents into sending me to a special school even though all my problems are physical and not educational.
Through my whole educational experience, fitting in was difficult when I started at a new school and college but I quickly integrated into a normal social lifestyle. There were some other disabled children in my school but not many (about six in my school year) so integration with able-bodied children was extra important so as not to become isolated…

Read More of Dan’s story on RareConnect

 

Read our second Rare Disease Day post: My son has Ehlers Danlos Syndrome

Jessica Cox: Celebrating Determination

Hope you’re all enjoying the Jubilee holiday.

This blog often talks about the challenges faced by our SEN & disabled children and the struggles by parents to get them the help they deserve. Today, I’d like to share a video with you from a truly amazing young lady who has overcome a significant physical disability to lead a successful life.

Jessica Cox was born with no arms at all. Her mother was, naturally, devastated and worried for her daughter’s future. Jessica had to face stares, ignorant comments and lack of self-confidence as well as the purely physical challenges of how to live and learn.

Jessica decided she would do her best not to let her disability prevent her from doing anything she wanted. She taught herself to drive and even fly a plane with her feet. Today she is a motivational speaker who uses her experiences to help others.

Launching DysNet – and how the right education helped one man make a difference, despite disability

For the past two months, in addition to my special needs work, I’ve been working on an exciting project to launch an online community network for people living with limb differences.

DysNet is the brainchild of a dear friend of mine, Geoff Adams-Spink, about whom I’ve written on this blog before. It’s aimed at bringing together people around the world affected by dysmelia (congenital limb differences) to share information, knowledge and resources. Today, Geoff writes about his life for Special Needs Jungle and demonstrates that, with the right support and education, it is entirely possible to live a rich, rewarding and independent life.

From Small Beginnings

First let me declare an interest: Tania Tirraoro the award-finalist writer who hosts this blog is a good friend and a professional contact.  She and I trained together as journalists on the South Cornish coast way back in 1988.  Back then, Tania was vivacious, tenacious and keen to get on.  More than two decades later, absolutely nothing has changed.  Or has it?

Bringing up two boys with Asperger’s has directed her considerable energies into the field of special needs education.  As someone who spent most of his childhood at special boarding schools, she has asked me to share a few thoughts about my experiences and about the current debate about special schools vs. inclusive education.

Geoff Adams-Spink

I was born half a century ago with disabilities caused by the morning sickness drug, thalidomide.  The drug left me with extremely short arms, flipper-like hands and very limited vision in the one eye that I have – the other is completely absent.

Back then, children with physical disabilities were destined for special schools – mainstream either wasn’t geared up or wasn’t prepared to gear up to support us.  My parents were told in no uncertain terms that my safety couldn’t be guaranteed if I attended the same local schools that had served my two sisters and my brother perfectly well.

So, aged five, I was packed off to Penhurst school in Oxfordshire which was run by NCH – now NCH, Action for Children.  I recently revisited the place and found it transformed.  It no longer supports children with the sort of disabilities I have.  All of the students have profound and multiple learning disabilities or PMLD.  The 26 children require intensive support from the 150 or so staff.  The cost of a place there can only be guessed at.

And this has set me thinking about the current debate about special needs vs. inclusive education.  It seems to me entirely ridiculous that anyone should assume that one approach should be adopted exclusively.  If we are, in the words of a former Secretary of State for Education to “respond to the needs of the child” there is surely room for a mixed economy.  Plenty of children – myself included – would probably manage perfectly well in mainstream education with a few minor adjustments.  Others would be left in the margins and need the specialist support of staff who know how to encourage children with different needs to achieve their potential.

This is not simply about physical compared with learning disabilities: two children with, superficially, the same level of impairment could well require different responses from the system.  My nephew, for example, has Asperger’s and managed quite well in mainstream education.  But he has the benefit of supportive parents who have equipped him with the knowledge to know how to regulate his behaviour and manage his condition.  He’s also a big strapping lad who has no shortage of confidence.  Another child with the same level of Asperger’s may well struggle in the same environment.

Is there life after special education?  You bet!  I out-grew Penhurst quite quickly and was sent to another boarding school aged eight.  This establishment had an approach that – at the time – was quite revolutionary: that disabled children (the majority were vision impaired though some had physical disabilities as well) should be encouraged to acquire certificated qualifications.  I left the place after nine years with eight O-Levels and went on to study for A-Levels at an FE college and then on to university.

So how have mine and Tania Tirraoro’s paths crossed again?  Tania is now an expert in the use of social media.  After 22 years working as a BBC journalist, I am now Chairman of a European organisation that represents people with limb difference.  We have an ambitious project to create a global network of those affected by dysmelia (as limb difference is officially known) and to link this network with a knowledge base and another network of dysmelia experts.  Spreading the word using social media is a no-brainer.  And our choice of Tania to establish our social media networks to help us achieve our goal was equally simple.

On Monday May 21, Tania is helping us to launch DysNet – an online community that will help people to conduct conversations in five languages. We’ll have a knowledge-sharing website and a secure community forum on RareConnect, run by EURORDIS & NORD, the world’s leading rare disease organisations.

I wonder whether, when my distraught mother left me at Penhurst for the first time, she had any idea that her son would get so much from his special education.

DysNet Website  | DysNet Twitter | DysNet Facebook | DysNet G+