resources.

 

'ASK THE EXPERT' event notes & linked resources:

• Notes and linked resources from our March 2024 'Ask the Expert' event HPA Axis and Supporting Strategies with Dr Cassie Jackson, Clinical Psychologist, FASD Expert Witness

• Notes and linked resources from our 'Ask the Expert event with  Dr Raja Mukherjee, Consultant Neuro Developmental Psychiatrist & Clinical Lead for FASD

• Notes and linked resources from our 'Ask the Expert' event with Dr Cassie Jackson Clinical Psychologist Director of the Centre for FASD

• Notes from 'Ask the Expert': Wills & Trust Fund Event 

• Notes from 'Ask the Expert': ARFID with Dr Rachel Bryant-Waugh, Consultant Clinical Psychologist
  Maudsley Centre for Child and Adolescent Eating Disorders

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• NEW: Legal Guidance FASD & YOUR EMPLOYMENT RIGHTS

• NEW: Legal Guidance FASD & EHCP's

• NEW: Legal Guidance FASD & Special Guardianship Orders (SGO)

• NEW: Legal Guidance FASD & Foster Care

• NEW: FASD LANGUAGE

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PREPARING FOR THE DIAGNOSTIC APPOINTMENT: 

• ​Retrieving Birth Files: Please find a useful template for the request HERE

• Summary example of gathering of evidence for diagnosis: Please find an example provided by a parent  HERE  (Please note this has been redacted to anonymised and is as way of an example only).

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HEALTH: ​​

• UK HEALTH NEEDS ASSESSMENT for FASD 

• UK NICE QUALITY STANDARDS for FASD 

• Scotland SIGN Guidance FASD;

• FASD INFORMATION OVERVIEW

• FASD OVERLAPPING CHARACTERISTICS

• Diagnosing FASD with overlapping characteristics; a short overview with Dr Raja Mukherjee

• NEW: FASD, STRESS  & MENTAL HEALTH

• NEW: FOOD DISORDERS & FASD; helpful study and strategies

• EYE CONDITIONS 

• EYES & FASD SUMMARY

• EYES: vulnerabilities

• EYES: NYSTAGMUS (common in FASD)

• EYES: NEW RESEARCH IN DIAGNOSTIC EYE CODE

• NEW:  DENTISTRY : Many children with FASD need specialist support with teeth due to poor enamel, over crowding and structure of the mouth. Many local areas provide a service for children with special needs where the service is quiet, lights are dulled and there is more time between appointments. Speak to your GP for a referral to a specialist dental centre. Please find here a useful research paper identifying common areas of need with FASD 

• Support for your Dentist in identifying FASD; a useful tool to print or send to them

• MOUTHBREATHING, TEETH, SWALLOWING, SUCKING: research helpful to understand complexities of FASD

• EPILEPSY: recognising the signs, epilepsy is more common in those with FASD

• MEDICATION: psychotropic drugs and FASD; medications that can support clinicians with supporting FASD with linked co-morbid conditions

• STREP B & SCARLET FEVER: new leaflet identifying what to look for

• SOLVENTS, GLUE & AEROSALS: a new tool in your belt to spot signs and to keep in mind locking temptation away 

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SLEEP & SEPARATION ANXIETY: 

• Cerebra a great Charity who support brain conditions have a new sleep service offering online support and a great range of resources, please find a link to their service HERE

• A really strong resource here from Cerebra on Sleep & Separation Anxiety for children with complex needs

• SLEEP Some other great resources and ideas for supporting sleep

• BRAINSTEM Soothers;  a lovely resource here from Beacon House to support gentle regulation

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SENSORY NEEDS: ​

• TRAUMA & FASD; Prof Alan Price talks here in a powerful piece of research

• NEW: DEVELOPMENTAL TRAUMA & ALCOHOL; explaining the links here with Alcohol

• NEW: MAKING SENSE OF SENSORY NEEDS

• SENSORY INTEGRATION; a great presentation from Family Futures 

• Helpful checklist for sensory needs; remember FASD is a spectrum,  what we see in one child is not necessarily the same in others

• SENSORY NEEDS OUTLINED; a useful guide that identifies sensory needs, you can tick off what you see which is useful if you are gathering information for an EHCP, School or a referral. 

• MAKING SENSE OF SENSORY NEEDS; a useful overview of spectrum of needs

• SENSORY PROCESSING DISORDER, CO-ORDINATION & ATTACHMENT: a great overview, providing strategies to support from Beacon House

• SENSORY NEEDS TEMPLATE FOR SCHOOL ; this template is for you to tailor to support your childrens needs, what works for them, whay an OT might suggest or what you would like tried in School. 

• MASKING IN SCHOOL: This is a showstopper resource to demonstrate the significance of trauma & FASD that are frequently misunderstood, those who are not appropriately trained or knowledgeable can often make inaccurate assumptions where a child masks for instance, we have linked here a good reference for Schools where Beacon House identify well how a trauma response can make a child ‘blend in to survive’

PHYSIO: 

• NEW: Strengthening Exercise Cards for Core Strength, Bilateral, Upper Extremity, Lower Extremity 

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SPEECH & LANGUAGE: 

• TOURETTES: support through specialist Speech & Language Therapy

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SUPPORTING OLDER CHILDREN & ADULTS: 

• Focussing on the 30 years experience of supporting FASD ; excellent resource.... very good section on daily routine! HERE

• NEW Transition Planning from childrens to adult services (UK)

• Learning from other countries who are ahead of support for adults, a great resource shared   HERE

• A must watch webinar by a SEND Solicitor if you have children to adult transitions HERE

• NEW FASD MEDICAL INFORMATION FOR POLICE: 'I am a vulnerable person' card (free downloadable), FASD & the law

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SUPPORTING BABIES: 

• Supporting neurotypical and neurodiverse premature babies

• NEW: Supporting prenatal exposure to alcohol and drugs in babies

• Immune response in babies and children with FASD

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TOLIETING: 

• SMEARING; a common problem for children with sensory needs and those who have experienced developmental trauma

• TOILETING & SCHOOL; Providing school with a Toileting Health Plan (template found link)

• TOILETING & SENSORY NEEDS Some great support here from The Childrens Bowel & Bladder Charity ERIC

• TOILETING; training support for staff in School, toilet access, planning and reviews

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RESPITE & SUPPORT: 

• What does the law say about getting support to care for disabled children & young people?  

• Secondary Trauma: outlining the six key principles of good practice as – safety, trust, choice, collaboration, empowerment and cultural consideration

• A helpful document to give Disability Social Worker assessing need; provides an overview of the complexity of need of FASD

• Trauma response: Compliance & masking... "I have learnt to blend in to survive", "he is fine at school"

• 'Disabled children and young people up to 25 with severe complex needs: NICE Standards for integrated service delivery and organisation across health, social care and education’ 

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TEACHING & LEARNING: (Exclusion rights & EHCP section further below) .....

• NEW: FASD & LEARNING DISABILITY/DIFFICULTIES

• MASKING & COMPLIANCE in School; a trauma response 

• PRIMARY FRAMEWORK TEACHING AND LEARNING STRATEGIES TO SUPPORT FASD

• SECONDARY FRAMEWORK: TEACHING AND LEARNING STRATEGIES TO SUPPORT FASD 

• NEW FASD & ME: a great editable document to support Home/School scaffolding and understanding

• NEW: Your rights for education; slides hosted by IPSEA Legal Team (great links to legals cases law, rights and templates

• NEW: Recorded webinar hosted by IPSEA Legal Team (great links to new guidance, case law, rights and templates) linked here

• EDUCATIONAL SUPPORT FOR FASD

• CHOOSING A SCHOOL CHECKLIST

• WHAT EDUCATORS NEED TO KNOW

• FASD STRATEGIES as recommended by Dr Cassie Jackson ASW conference 2021

• TEACHING & LEARNING TIPS & MORE ABOUT BRAIN DAMAGE

• EXECUTIVE & COGNITIVE  some excellent detailed teaching techniques for scaffolding teaching & learning (excellent for an EHCP)

• FASD Health Needs Assessment: the background to why strong scaffolding is needed to support FASD

• STRENGTHS OF FASD Summary

• Sensory Overload: What does this really feel like?

• Some great FASD SCHOOL support here from New Zealand, they lead the way on FASD; why re-invent the wheel, lets learn from them!

• COMPARING FASD/ADHD/ODD Dan Dubovsky 

• Disabled Children and the Equality Act 2010: What teachers need to know and what schools need to do

• Sexual Health

• School Anxiety

• NICE quality standards: Social, Emotional and Mental Wellbeing in Primary and Secondary Education

• Important guidance if due to physical or mental health needs your child needs to attend education part time

• New guidance (Feb 2023) on Summary of responsibilities where a mental health issue is affecting attendance (includes part time attendance)

• ADMISSIONS CODE in Schools UK: page 10 "All schools must have oversubscription criteria for each ‘relevant age
  group’ and the highest priority must be given, unless otherwise provided in this Code, to looked after children and all previously looked after children" ...... if a school meets needs you can request a place through the School asking the Local Authority to pay for an additional space even if oversubscribed.  

• ALTERNATIVE PROVISION  The Timpson Report says "Commissioning alternative provision: The best AP offers some of the greatest expertise of working with children with challenging behaviour and additional needs, and is used not as a last resort but a ‘first resort’ – offering advice, outreach and short-term placements that help children get back on track and help divert them from the pathway to exclusion" pg 74

• Alternative Provision Guidance 

• Tourettes Educators Pack 

• 10 Brain Domains

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EXAMS

• Extra support for EXAMS

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TRANSPORT

Under section 508B and Schedule 35B of the Education Act 1996 local authorities are under a duty to provide free school transport to "eligible children"

• Transport & the Law; what qualifies as "eligible children"

• SENTAS; Understanding your rights on SEN home to school transport and parental preference of school placement

• Transport; your legal rights 

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EXCLUSION

• NEW: September 2023 Guidance for School Exclusion

• NEW: Off rolling, gaming, exclusion, part timetable

• NEW: Your rights for education; slides hosted by IPSEA Legal Team (great links to legals cases law, rights and templates)

• NEW: Recorded webinar hosted by IPSEA Legal Team (great links to new guidance, case law, rights and templates) linked here

• Useful support in your rights to temporary exclusion

• Page 32 point 68 "Local authorities and schools must have regard to the Department’s statutory guidance 'Exclusions from maintained schools, academies and pupil referral units in England'. In line with that guidance, head teachers should, as far as possible, avoid excluding any looked-after child. VSH should build relationships with Governing bodies, head teachers and designated teachers to support this. VSHs should ensure that carers and social workers know where to seek advice about their role and responsibilities regarding exclusions.

• Exclusion, Temporary or Alternative Education ; your legal rights

• Challenging discriminatory exclusions: a guide to making written representations (SENDIAS)

• Government Guidance on Exclusion including special needs

• Ofsted Framework & Handbook for SEND (November 2022)

• Disability Legislation; helpful to review rights of families with disabled children and young people

• Alternative Provision

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PUPIL PREMIUM PLUS (UK)

• NEW: An introduction to Pupil Premium Plus

• This guidance from PAC below is very helpful but is slightly out of date as the monetary value has gone up to £2,530 per child per school in 2023-24 

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EHCP: Education Health & Care Plans (UK)

• NEW: OMBUDMAN REPORT on Personal Budgets (UK); a must read for anyone with or applying for an EHCP

• 'EHCP Getting Started!' this is a really useful guide to help you prepare everything you need to consider (Special Needs Jungle)​

• Once you or the school has applied for an EHCP an Educational Psychologist will arrange with School to observe your child in class and ideally in the playground at School. Ask the School SENCo for the date of when this will happen (as they will often not tell parents) & for the contact name & email address of the Educational Psychologist visiting your child where you can introduce yourself & send them all the Teaching and Language guides specific to FASD (details below) asking for a 'parent feedback' session where you can then chat to them about the things you see, how your child might 'mask or mimic' in school or where your child might come out of School with their lid ready to blow etc. It is very important to have this time with them and is not a standard request the school will be used to but it is your right to do so and vital because often a  child with FASD or developmental trauma will mask when observed as part of a masking 'trauma response' to protect themselves. The Teaching and Language FASD framework guides  above should be sent or given to the Educational Psychologist visiting your child as part of the EHCP process, do not assume they have FASD knowledge; this might include: 

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• ​PRIMARY FRAMEWORK TEACHING AND LEARNING STRATEGIES TO SUPPORT FASD

• SECONDARY FRAMEWORK: TEACHING AND LEARNING STRATEGIES TO SUPPORT FASD 

• EDUCATION SUPPORT FOR FASD

• HEALTH NEEDS ASSESSMEMT FOR FASD

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• EHCP What to Write Where? A really helpful breakdown of every section of the EHCP and support in what kind of things to write (IPSEA)

• EHCP Good Practice with more examples of what to write (Council for Disabled Children)

• EHCP Checklist! Really helpful to help you navigate all the sections & to understand what should be in them

• Disabled children and young people up to 25 with severe complex needs: NICE Standards for integrated service delivery and organisation across health, social care and education’ 

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Checking the draft? Where to start, what does a good EHCP look like?  

• What words should not be seen in the case workers draft, find here a useful table and good support for interpreting the draft and providing a response.

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Other helpful information provided by our members on EHCP's: 

• SEN Code of Practice

• Useful guide on EHCP criteria from the PDA Society

• Writing your EHCP: this is not an EHCP document but from page 6 onwards it help give you sensory needs words that you might overlook

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• EHCP Support & Template Letters:

  • https://sossen.org.uk/information_sheets.php

Useful EHCP Facebook support groups:

• EHCP Experiences & SEND support, Dorset LA EHCP, SEND & EOTAS Support group, Somerset EHCP Support, EHCP Experiences Devon, EHCP Experiences Hampshire, Bristol & surrounding areas EHCP support

We have added this FASD 'scaffolding in education support' link again here as we don't want you to miss it! ......it is a very powerful document written by Maria Catterick of our FASD Alliance that should be included in any EHCP application as well as any review.

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EHCP ANNUAL REVIEW:

• Annual Review information

• Annual review checklist

Include details from the FASD Framework in your review discussion and document (find below link where you will find strategies appropriate for EHCP half way through the document below): 

• Primary Framework for FASD

• Secondary Framework for FASD

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EARLY ANNUAL REVIEW 

Has your childs education, health or social care needs changed and are no longer accurately described in the EHC plan; or
that the education, health or social care provision in the EHC plan is no longer meeting the child or young person’s needs?

• When can I call an early review?

• What doe I write in the letter requesting an early review?:  Editable template here​

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SEND LAW:

• NODDY  ‘no-nonsense’ Guide to SEN law February 2022 (important document if you are appealing decisions)

• Disabled children legal handbook (free downloadable book) 

• Case law, good example of south west tribunal win for EHCP Review

• Section F in an EHCP; SEND legal case examples

• ‘Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across health, social care and education’

• Adopting with or with knowing of additional need

• NEW: Legal Guidance FASD & YOUR EMPLOYMENT RIGHTS

• NEW: Legal Guidance FASD & EHCP's

• NEW: Legal Guidance FASD & Special Guardianship Orders (SGO)

• NEW: Legal Guidance FASD & Foster Care

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HOME EDUCATING: 

• Getting started?  Helpful support here with answering some of your questions

• Template de-registering letters

• Government Guidance Home Education

• SEND legal advice on Home Education

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Find here our Facebook FASD Resources pages for ideas and activities to support FASD

Find here our dedicated Facebook FASD Friends Home Educating community set up to specifically support home education

 

FLEXI-LEARNING:

• Flexi Learning :Everything you might need to know!

 

EOTAS: ​

• Education Other Than School (EOTAS)

• Alternative Provision

• Useful information re EOTAS case law; good for providing examples of supporting need

• Other Provision: Ombudsman Report citing failings in system; useful if in an appeal situation to demonstrate LA need to support child

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MEDICAL NEED NOT TO ATTEND SCHOOL: 

• If your child cannot attend School for medical reasons

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VIRTUAL SCHOOL HEAD: On the 1st September 2018, virtual school head teachers became responsible for promoting
the educational achievement of previously looked-after children living within their local area. Statutory guidance from the Department for Education (DfE) requires virtual school heads to provide information and advice to adoptive parents, special guardians and carers and also to
providers of funded early years education and designated teachers. Virtual school heads must also ensure that their local authority fulfils their duty to provide suitable advice and information for the purpose of promoting the educational achievement of previously looked-
after children. If you don't know who your Virtual Head is Google Virtual Head in your area, they should have a website with details of what is happening in your area. 

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• Statutory rights of children looked after & post looked after

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DESIGNATED TEACHERS: Every School is required by law to have a Designated Teacher who represents children in care and those who have left it. It is their role to liase with the Virtual School, SENCO and other school staff. Please ask your school who your designated teacher is as they should participate in every meeting you have at School and support your family. They will take part in specialist training that is available through the Virtual School.  For the official guidance on the role read more here.

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EPPLAC meetings & paperwork: 

'Education Plan for Previously Looked After Children' (we are currently challenging the title of the form!), an EPPLAC or EPAC is a document that is used to identify key strengths and areas to support for your child in school.

Education Plans for Previously Looked After Children are a continuation of the good practice seen within the regular (PEP) Personal Education Plan reviews for 'Looked After Children'.

The purposes of these meetings are to:

• Encourage positive collaboration and communication between home and education provision

• Raise awareness of the needs and issues faced by children and their parents

• Review the support, interventions and progress of the child

• Identify unmet needs of the child

• Discuss PP+ allocation, in relation to the child’s needs and the benefit of the school’s cohort of Previously Looked After Children.

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So what all this means to us is this document can be a vital tool to support and EHCP and can inform the School about your childs needs through regular meetings which should be held through a SEND review. If your School don't do this with you currently they need to so contact the School SENCO to arrange. 

 

FUNDING FOR EQUIPMENT:​

• Lots of support here, great booklet of many supporting grants

• Sensory Needs

• Play Therapy Pods: The Free Play Therapy Pods are self-contained and are delivered direct to your door. A kit is tailored to developmental age; birth +, 18mths +, 3 yrs +, 5 yrs +

• Equipment hire and to keep through the great supportive charity NewLife

• Search for grants by postcode!

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BENEFITS:

Disability Living Allowance

• DLA Carer & Disability rate 2023/24 UK

• Short webinar on claiming 'Higher Level' Disability Living Allowance (DLA): a must to watch!..... discusses severe disability criteria and good mention of FASD

• What is severe disability : mobility criteria

• What is severe disability : mental health

• Disability living Allowance : very helpful support of what to include

• Great support here from 'Contact' on lots of types of support ​

• Step by step guide on claiming DLA Cerebra brain injury

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Personal Independence Payments​

• Personal Independence Payments (PIP) : helpful support of what to include

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Universal Credit (UK)​

• Universal Credit application for Children post 16 

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Adoption Allowance (UK)

• Adoption Support Allowance & other benefits for Adoptors

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Adoption Support Funding (UK)

• Adoption Support Funding (ASF): Adoption Support Funding for Adopted & Special Guardianship Families up to and including the age of 21, or 25 with an education, health and care plan, who: are living (placed).

  • Until the end of March 2025 the ASF will have 2 fair access limits:

  • £2,500 per child/young person per year for specialist assessment

  • £5,000 per child/young person per year for therapy

  • Helpful guidance on ASF here including eligibility & suggestions for therapy

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TIPS ON HOW TO SUPPORT CHILDREN & TEENS: 

Sensory Activities, Occupational Therapy; a wealth of 'top tips' provide some really simple things that can be used in the Home and School 

Many parents recommend Nate Sheets YouTube videos  where his way of explaining how children and young people respond well to simple instructions works! 

One parent describes the challenges she faces.... "if a child is struggling in school then he/she is likely to blow at home, mine did exactly this.... masked all day and then literally as soon as they came out were bouncing all over the place. We found the OT from the NHS didn't have enough experience so we were funded through Adoption support Funding to see a specialist called a 'Sensory Integration Trauma Occupational Therapist' where we put in lots and I do mean lots... of sensory breaks in School and the School learnt to pace their language where we then started to see noticeable differences. Also we did a lot around keeping our children safe in school as my son is impulsive and very easily influenced by others..... this was written into risk assessments & with the report we received from the OT we applied for an EHCP." 

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RISK ASSESSMENTS: To make sure your School has considered 'risk', ask for their risk assessment of your child or young person. Every child or young person with SEND should have one; the actions from this should inform SEND reviews or/and EHCP reviews..... e.g. a child should be risk assessed if additional staff need to support on a school trip this should be included in the 'risk assessment' and the EHCP as additional funding will be required from school budgets. Examples of risk assessments can be found here

EQUALITY

• Equality Act Guide 

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THE SYSTEM FAILS a very powerful video by Sarah Naish focussing on the role of the social worker; signposting to useful tools to assist professionals in assessment of need

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JUSTICE SYSTEM: 

NEW FASD MEDICAL INFORMATION FOR POLICE: 'I am a vulnerable person' card (free downloadable), FASD & the law

FASD Guidebook for Police Officers; a very useful guide for professional in how to support children, young people and adults

'Nobody made the connection'; powerful research discussing why early intervention is everything, should be included in every EHCP application!

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EXTENDED LEAVE FROM WORK: 

Taking unpaid leave from work

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CO-MORBID CONDITIONS:

this section is under construction!...

ADHD & FASD: Guidelines for identification and treatment of individuals with attention deficit/hyperactivity disorder and associated fetal alcohol spectrum disorders based upon expert consensus

ADHD: Understanding and Supporting my Child's ADHD

ADHD Activity Book 

ADHD Teenagers 

TOURETTES: support through specialist Speech & Language Therapy

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Other great reading & sources of support: 

TOP TIPS HANDBOOK

FASD NETWORK RESOURCES

NATIONAL ORGANISATION FOR FASD (NOFAS) RESOURCES

ME & MY FASD

TUNING INTO TEENS

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MINDFULNESS: Remembering how to breathe; a lovely relaxing track and clip to support mindfulness

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SOCIAL WORK & FASD: A very useful overview of Fetal Alcohol Spectrum tailored to social work Dec 2022 publication

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©FASD Hub South West & FASD Friends Community Interest Company

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