IF I WAS QUEEN FOR THE DAY…Sue Berry, Parent to a child with Coffin-Sirus Syndrome.

WISH 1

I wish the continual advances in knowledge about my daughter’s condition can help her reach her potential at school.

Development – from birth to adulthood.

Teacher Toolboxes(main stream schools)

Autism Dyspraxia ADHDDowns Dyslexia

How can research help?• To enable the educationalist to help my daughter to learn.

• To provide technology that can be use to instil and re-enforce this learning with my daughter.

• To provide a pipeline for the education team to keep up with all the new research.

• “What do I say to a teacher who wants to know more about my daughter’s condition so that they can help her to learn and reach her potential?”

WISH 2

I wish I knew the best path to follow to support my daughter.

How do I know what way to go..?

Who knows what?

Child

Clinicians

Education

research

Social services Child

Clinicians

Education

Research

Social services

Falling between the cracks

WISH 3

I wish that my daughter’s developmental progress was monitored in such away that professionals can support her better.

Medical services / clinicians involved in the first 10 years of my daughter’s life:Age /Service

0 1 2 3 4 5 6 7 8 9 10

Neurology

Portage

Specialist nurses

Dietician

S&LT

Physio

OT

Eyes

ENT

Psychologist

Orthotics

Paediatrician

Genetics

The holistic child

Why is there no annual audit of skills?

Child development timeline

A site for every childTo be used by

clinicians, therapists, researchers,

AND the family

Family can record achievements,

milestones and other skills.

Key benefits of a Child Development Timeline (CDT)

• A summary ‘dashboard’. • Regular parental input from any device.• Core information in standard format.• “Single source of the truth.” • Easy dissemination of new discoveries.• A rich resource for research.

And all this technology is here now!

IN SUMMARY

My 3 wishes are..

1. EDUCATIONAL: I wish the continual advances in knowledge about my daughter’s condition can help her reach her potential at school.

2. SOCIAL: I wish I knew the best path to follow to support my daughter.

3. MEDICAL: I wish that my child’s developmental progress was recorded in a way that helped new professionals support her better.

Joined up thinking

If I was God for the day

All children would have a blood test at

birth and broken/missing genes

would be fixed.

Finally I’d like to introduce my daughter.Her name is Charlotte

Thank you