Thursday, 1 March 2018

Resources for parents of children with invisible illnesses

Some simple advice for dealing with professionals when your child has a special educational need, disability and/or chronic illness

1.Seek out charities and local organisations that support your child's conditions, so that you can gather as much advance information as possible.

2.Do not trust anyone, may seem dramatic, but they aren't your friends and its not their child who is ultimately affected. At the same time, be polite and smile and try not to elicit any bad feeling from professionals or show distress, however upset you are.

3. Record all meetings and visits, things will be recorded wrong, whether by genuine misunderstanding or falsifying information  make sure you can prove what was said if needed as your word is immediately less than a "professionals".
If you ask to record anything, you will probably be told you can't, but that is also false. Please see the downloadable and printable book on this website.

Where do you turn when you are let down by doctors, schools and social services?
The answer is simple, we help each other! Most of these resources are set up by parents who feel they are let down or victimised by the system. Others are charitable organisations.

Transparency project website (ref above) clear, easy to understand advice on family law.

Tymes Trust (The Young ME Suffers Trust) offer support and helpline to parents and hands on help with false allegations of child abuse

ME Association, offers support for all those suffering from or caring for someone with ME

Parents of Children With ME/CFS Facebook group, support group for parents caring for children with ME and the many problems that arise

Fiightback EDS Facebook group, set up for parents facing false allegations of child abuse and or FII in children with EDS, but open to other invisible illnesses

Home Education UK, Facebook page and group, General Home Ed support and chat

Ed Yourself, Fiona Nicholson, Home Education Consultant, has alot of knowledge and expertise in the area and will actively support if needed.

Pop Art Facebook Group, discounts in subscriptions to online resources for home educators

Home educating our special needs children Facebook Group, for all extra extra needs

Home education  and PDA Facebook group, specific to PDA

Your local SEND group and home education groups can provide valuable insights into dealing with your local hospital/local authority

NISAI online college, we used NISAI for a short while, for reference, 2 GCSEs is £1000 a term 5 classes a week plus homework. After 15 (non consecutive) days off from school for chronic illness the local authority is legally required to make opportunities like NISAI available, but you will have to fight for this legal right because it is expensive.

Other online schools are available  apricot, inter High and others.

Not Fine In School school refusal Facebook group

School Refusal support Facebook group

Parents Protecting Children Facebook page and website, resources regarding dealing with aggressive social services

Local SENDAISS team, can attend meetings and help to pull support out of unwilling teams

YAS Youth Advocacy Service, to ensure that your children have a voice in proceedings (unless your local council has blocked such services and instead provides an "in house" service)

Council for disabled children have made a legal handbook available for free as a pdf

Please remember to always double check any advice and information given to you by social media to ensure it is correct before acting on it

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