Useful Links

HERE ARE SOME LINKS FOR WEBSITES YOU MAY FIND HELPFUL, PLEASE NOTE WE ARE NOT AFFILIATED IN ANY WAY TO ANY OF THESE LINKS

https://en.wikipedia.org/wiki/Agenesis_of_the_corpus_callosum

Defintion and description of ACC

http://www.acc-community.com/

A community for discussion agenesis of the corpus callosum and other callosal disorders.

https://nodcc.org/

National Organization for Disorders of the Corpus Callosum (NODCC) – a non-profit corporation established by professionals, parents and individuals with corpus callosum disorders.

http://ouraicardilife.org/

Aicardi Syndrome Foundation – provides information and comfort to families and friends of children diagnosed with Aicardi Syndrome.

cry-sis.org.uk

Cry-sis – support for families with excessively crying, sleepless and demanding children.

hacsg.org.uk

Hyperactive Children’s Support Group – Information relating to help with problems relating to hyperactivity

able2wear.com

Disabled clothing and wheelchair clothing

disabled-clothing.co.uk

Special needs clothing including bibs, vests, swimwear etc.

sensorytoywarehouse.com

Sensory Toys & Special Needs Toys

specialneedstoys.com

TFH – Large range of special need toys

tocki.co.uk

Range of wooden toys and glitter tubes.

fledglings.org.uk

Fledglings – helps parents and carers of a child with special needs to find simple, affordable solutions to practical problems.

seenin.com

Seenin – produce garments for both adults and children with special needs, which includes wheelchair covers, feeding bibs, feeding aprons, kerchiefs and changing mats

www.apni.org

Association for Postnatal Support (APNI) – Telephone support for mothers with postnatal depression.

direct.gov.uk

Sure Start – Provides information on Government support for children, parents and communities.

ace-ed.org.uk/

Advisory Centre for Education (ACE) – Advice for parents on state education, special education, exclusion from school, bullying and school admission appeals

https://www.autotrader.co.uk/cars/electric/ev-drivers-with-disabilities

What Drivers with Disabilities Need to Know-

  1. The driving gap between adults with and without a disability
  2. Benefits of and barriers to driving an EV for someone with a disability
  3. How to make EVs more accessible
  4. Support that’s currently available for disabled EV drivers

epilepsy.org.uk

Epilepsy Action have a helpline and regular magazines and support groups for those with epilepesy.

crelling.com

Special needs harnesses for vehicle seats, wheelchairs, shower & bath hoists, commode chairs, walking reins and more.

incarsafetycentre.co.uk

Good range of special needs car seats

sensorydirect.com

Range of weighted and sensory products

specialisedorthoticservices.co.uk

Specialist seating including the pod seat

trabasack.co.uk

Lap tray for wheelchairs, buggies, car seats

caudwellchildren.com

Provides specialist equipment, treatment and therapies for sick and disabled children across the UK

familyfund.org.uk

Family Fund for Families with Severely Disabled Children – Gives cash grants to ease stress on families caring for severely disabled children under 17.

http://www.newlifecharity.co.uk

Providing equipment to help individual children, nurse support services, medical research, awareness and campaigning

varietyclub.org.uk

Provide grants for equipment and wheelchairs

irc5.org

Who are we and why are we studying the Corpus Callosum.

gingerbread.org.uk

Gingerbread – Self-help association for one parent families.

sensoryintegration.org.uk

Promotes education, good practice and research into the theory and practice of Ayres’ Sensory Integration.

afasic.org.uk

AFASIC (Association for all Speech Impaired Children) – Helps children with speech and language disorders.

eric.org.uk

Enuresis Resource and Information Centre – provides advice and information to children, young adults, parents and professionals on bedwetting and soiling.

heightmatters.org.uk

Child Growth Foundation – Information and advice for parents concerned about their child’s growth

ican.org.uk

I CAN – Advice and information for parents of children with speech and language difficulties.

nas.org.uk

National Autistic Society – Advice and information on autism, puts parents/carers in touch, provides day and residential centres for the care and education of autistic children.

nhsdirect.nhs.uk

NHS Direct – 24hr nurse led helpline giving health information and advice.

rarechromo.org

UNIQUE – a rare chromosome disorder support group that produces regular newsletters and genetic information.

How Music Therapy May Benefit Individuals With ACC or Aicardi Syndrome

Both adults and children with ACC or Aicardi Syndrome may derive numerous benefits from music therapy. Music therapy has helped numerous individuals deal with a variety of mental health issues, from aging-related conditions to substance abuse problems to trauma. It is beneficial not only for those with special needs; it aids with overall development in general. And one need not be musically talented to reap the benefits of this type of therapy. It can be helpful for anyone.

What is music therapy?

Music therapy encompasses a wide range of activities and interactions. It can involve something as simple as listening to music, or it could entail learning to play an instrument, percussion activities, or guided imagery. While actual music therapy must be done by a trained professional therapist, there are also therapeutic and mental health benefits from listening to music in one’s daily life. It is important to note that this is an evidence-based form of therapy.

Benefits of music therapy.

Music therapy has been demonstrated to aid in both mental and physical health. It can reduce blood pressure, heart rate, and muscle tension and help with pain management. Music therapy can improve memory, and help support coping skills, self-regulation, and communication with others. And it is excellent for the relief of stress and stress-related symptoms such as anxiety, restlessness, or depression. Clearly, music therapy has a lot to offer whether one has a disability, is in recovery, or simply wants to pursue improved wellness in general.

How music affects the brain.

Music stimulates and exercises the brain in a variety of ways, and this is evident in the fact that musicians often have healthier and better-developed brains than non-musicians. Music can help with functions related to memory, motor control, and spatial coordination. It can also aid in brain symmetry. Many musicians have an especially well-developed corpus callosum: this is the system of nerves connecting the two hemispheres of the brain. This is significant since in individuals with ACC or Aicardi Syndrome this segment of the brain is underdeveloped or even absent. Now, not every individual with ACC or Aicardi Syndrome benefits from or even enjoys music – but many do.

How to implement music therapy.

You may want to seek out a licensed and trained professional music therapist for yourself or your child.  Or you may decide you want to access the benefits of music by learning to play an instrument, learning to compose, or working on expanding your appreciation for different musical genres.

Types of music that are most beneficial.

While classical, instrumental music can be popular in music therapy, it turns out that often rock and roll can also work well. Additionally, there is a type of music, binaural beats, which has been created and developed specifically for its therapeutic effects

Including more music in your daily life.

If you or your child are among the many who find music and music therapy beneficial for managing your condition, try out different ways of incorporating music into your everyday routine. Have playlists put together for different activities, moods, and times of day. Try learning the lyrics to your favorite songs, or even how to play them on an instrument such as piano or guitar. If you have room in your house, set up a listening station where you or your child can escape. Make sure your listening station is set up so it won’t disturb others and provide it with comfortable furniture and cushions. If you don’t have space for large, high-quality speakers, a soundbar may be a perfectly satisfactory and affordable alternative.

Music therapy may not be beneficial for everyone with your condition – or it could make a significant difference. So sample different types of therapy, and different types of music, and consider reaching out to a professional therapist. If you are living with ACC or Aicardi Syndrome, in the UK, and are in search of more information, you can contact the Corpal Helpline at +44(0)7427 429 388 or look into their membership programs.

Image via Pixabay

mychildandmemagazine.co.uk

Magazine for parents of young children with additional needs

parkat.co.uk

Advice and information for disabled and mobility restricted passengers travelling through UK Airports.

choicecaregroup.com

The Choice Care Group – provides personalised residential support for adults with learning disabilities, mental health disorders and complex emotional and behavioural needs across 39 homes in Berkshire, Wiltshire, Hampshire and Gloucestershire.

citizensadvice.org.uk

Citizens Advice Bureau – Advice on all benefits, housing and your rights generally

disabilityalliance.org

Disability Alliance – Information and advice on benefits for all people with disabilities

pamis.org.uk

PAMIS is the only organisation in Scotland that works solely with people with profound and multiple learning disabilities and their families for a better life.

sensescotland.org.uk

Whether it’s for a few hours a day or seven days a week, we can offer you tailor-made support throughout Scotland. Our free advisory service is at the heart of Sense Scotland and is often the first point of contact for disabled people and their families.

scottishdisabilitysport.com

SDS is the Scottish governing and co-coordinating body of all sports for children, athletes and players of all ages and abilities with a physical, sensory or learning disability. SDS has the vision of developing opportunities and improving performance in disability sport for children, athletes and players with a physical, sensory or learning disability in Scotland and contributing to UK and international initiatives.

cornerstone.org.uk

We work with individuals and families to agree what sort of support best meets their needs. This could be providing specialist accommodation on a fulltime basis for people with more complex needs, to just a few hours befriending a week to help an individual build confidence and make friends. We support individuals of all ages, ranging from after school care for children with disabilities, to day care support for older people with dementia.

capability-scotland.org.uk 

We will work with people with complex and diverse needs, building on our extensive experience to create personalised care, support and education that reflects our values. We will deliver care, support and education that provides choice and progression across all age groups and will support individuals to achieve their outcomes.

aberlour.org.uk

Looking after a child with a disability can be demanding. Our services are designed to make life easier, so that all family members can thrive.

scld.org.uk

The Scottish Commission for Learning Disability(SCLD) is the lead strategic partner to the Scottish Government in the delivery of learning disability strategy and policy. We are an intermediary organisation for the learning disability sector in Scotland, and we are committed to finding new and better ways to improve the lives of people with learning disabilities.

disabilityscot.org.uk

Disability Information Scotland enable positive change by sharing information on disability when people need it, in a way they want it.

City of Aberdeen

camphillwellbeing.org.uk

We are a Scottish charity supporting the wellbeing of patients and their families through an integrated, person-centred approach to health, education and social care. Our team has over 20 years of experience working with children, young people and adults who have learning disabilities and additional support needs.

archway.org.uk

Archway’s purpose is to create a network of care which supports the individual and the family, values their uniqueness, upholds their rights and respects their dignity.

Aberdeenshire

vsa.org.uk/richmondhill-house 

VSA’s Richmondhill House offers independent residential and community based support and assessments for children from birth to five years and their families. Both residential and outreach support is offered to families where child protection and/or child care issues have been identified.

parent-to-parent.org

A voluntary organisation which supports parents of children with additional support needs, whether physical, learning, sensory or behavioural which is associated with the disability.  It also supports parents of children who are seriously or terminally ill or parents who have suffered a bereavement of a child. It provides advocacy for children and young people with additional needs. All families must live in Angus, Dundee or Perth & Kinross.

affinitytrust.org

We are committed to doing our very best for the people we support and never giving up on someone we support. We are Reliable and always do what we say we will do. We are Honest and open in all of our relationships and transactions. We are Respectful of others, their views and their right. We are Inclusive in how we value diversitysupport equality of access to opportunities and challenge discrimination. We are Creative and flexible in our thinking, in our work and in how we use our resources.

ayrshiresportsability.org.uk

Ayrshire Sportsability is an investment in the future of people with a disability. These people will benefit from our activities by meeting other people, taking part in new and exciting sports, taking up sports regularly, developing further and taking part in competitive sports, in partnership with Scottish Disability Sport.

affinitytrust.org

We are committed to doing our very best for the people we support and never giving up on someone we support. We are Reliable and always do what we say we will do. We are Honest and open in all of our relationships and transactions. We are Respectful of others, their views and their right. We are Inclusive in how we value diversity, support equality of access to opportunities and challenge discrimination. We are Creative and flexible in our thinking, in our work and in how we use our resources.

Holiday Homes

A three bedroom bungalow with wheelchair access, with stunning views over the sea, located just outside Dawlish in Devon. The towns of Dawlish Warren and Dawlish are both accessible by wheelchair. Exeter is about 20 mins away in the car; a wheelchair friendly taxi is available if required. Details on request when booking. Hoists are also available if required. Please visit www.aplaceforeverybody.co.uk  for more details and pictures. 

brainwave.org.uk

Programme aimed at realising the potential of children with developemental delay, brain injury or a genetic condition.

cafamily.org.uk

Contact a Family – Links families with special needs and offers information on specific conditions and rare disorders.

cerebra.org.uk

Cerebra – Has a quarterly bulletin that offers a wealth of information and stories for parents and carers of children with neurological disorders.

dlf.org.uk

Disabled Living Foundation – Source of information on daily living and disability equipment.

ncb.org.uk/cdc

Council for Disabled Children – Information for parents and details of all organisations offering help with particular disabilities.

parentlineplus.org.uk

Parentline Plus – Offers support to anyone parenting a child.