FASD and how our Hamish & Milo Wellbeing Resources can help

The 9th day of the 9th month is International FASD Day, and September is International FASD Awareness Month. In this blog, we draw attention to what primary schools can do to support children with this condition, and how our Hamish & Milo Wellbeing Resources can help.

What is FASD?

Foetal Alcohol Spectrum Disorders are neurodevelopmental conditions with lifelong cognitive, emotional and behavioural challenges.

FASD can occur when a person is exposed to alcohol before birth. Alcohol in the mother’s blood passes to the baby through the umbilical cord. Alcohol that passes through the placenta to a baby stays in their body for a long time and can damage their brain and body and stop them from developing normally in the womb.

There is no known safe amount of alcohol during pregnancy or when trying to get pregnant. There is also no safe time to drink during pregnancy.

International FASD Day Hamish & Milo
International FASD Day Embryo Hamish & Milo

How common is FASD in our schools?

As many as 1 in 13 babies born to mothers who drink during their pregnancy are affected by FASD in the UK.¹

In a study from Salford University that looked at the prevalence of FASD in schools, it was found that 1.8% of children were affected by FASD, almost twice as many as children diagnosed as autistic.

How does Foetal Alcohol Spectrum Disorder affect primary school aged children?

Every child is affected differently by this condition which is why multi-disciplinary assessment and ongoing support is vital. Both the learning environment and the curriculum need to be adapted to meet the individual needs of children with FASD.

There are characteristics often seen in primary school-aged children that educators should be aware of. These include:

  • Language difficulties

  • Short term memory difficulties

  • Poor impulse control

  • Attention deficits and hyperactivity

  • Social communication difficulties that affect relationships with adults and peers

  • Difficulties with emotional regulation

  • Sensory integration

  • Immaturity in social and emotional development

  • Low self-esteem

FASD Child Language Difficulties Hamish & Milo

How can our Hamish & Milo Wellbeing Programme support schools

We know that living with FASD brings with it considerable educational and relational challenges for many children and their families. It is vital that we remember that children with FASD can and do achieve. Alongside knowing and understanding their difficulties, we must celebrate and nurture their unique strengths, talents and interests, while also validating, empathising and supporting them with the challenges they will face.

To build happy, healthy, and confident children, they must believe that the adults in their lives understand them and will consistently show up for them when they meet barriers to learning and relationship struggles, both at home and in school. Our wellbeing programme focuses on many of the key emotional themes that children with FASD are likely to need support with; friendship, resilience, anxiety, diversity, strong emotions and anger, change and transition, conflict resolution, loss and bereavement, sadness and self-esteem.

Children’s voice is central to our approach, giving time to share experiences, develop empathy and friendships in a small group environment of safety, value and belonging. Our mental health and wellbeing programmes help children to talk about their lives and experiences, ensure children’s emotional development whilst enabling them to feel valued and heard.

Our complete package provides everything schools need to deliver the programme including detailed session plans, impact measurement tools, wellbeing journals, sock puppet kits and parent/carer leaflets. Parents and carers of children with FASD need schools to work with them as partners and they need schools to listen to their experiences at home, which may well differ to those at school. Our parent/carer leaflets help to build connected relationships between home and school that allow for a team approach to support children’s wellbeing.

FASD Attention deficits and hyperactivity

Parents and carers of children with FASD need schools to work with them as partners and they need schools to listen to their experiences at home, which may well differ to those at school.

We are delighted to bring the voice of Andrew Keeping, CEO of FASD Awareness to our blog this month. We asked Andrew to share his knowledge and experience of supporting children with FASD at primary school with us.

International FASD Day Awareness Hamish & Milo

1. Tell us about the aims of FASD Awareness and a little about your role as CEO?

Can I firstly thank the Hamish & Milo team for helping spread our FASD #BeAware message through your blog. At FASD Awareness Charity, our aim is to support the prevention of alcohol exposed pregnancies and to improve the quality of life for those living with Foetal Alcohol Spectrum Disorders (FASD) and their parents and carers. Our vision is to be a strong and effective voice for individuals and families living with FASD, while supporting initiatives across the UK to promote prevention, diagnosis, intervention, and management.

My role as CEO of FASD Awareness Charity is to help our founder Tracy Allen and our amazing team to achieve our aims. FASD is an irreversible brain damage and is the most common cause of neurodisability in the Western world and presents around 3-6 times the rate of Autism Spectrum Disorder in the UK. There are more children born each year with FASD than with ASD, Spina Bifida, Cerebral Palsy, Down Syndrome and Sudden Infant Death Syndrome (SIDS) combined, and yet the condition often remains hidden or misunderstood by the wider population. With awareness in the general public still critically low, the demand for education in key sectors – specifically those who are likely to engage with individuals on the FASD spectrum in a professional capacity – is clear. Around ¾ of children in the care system are deemed at risk. It has been estimated that individuals with FASD are up to 40 times more likely to become involved with the criminal justice system. The estimated cost of FASD to the UK is £2 billion per year.

Our charity run parent/carer support groups, monthly webinars, FASD youth and adult friendship groups and offer 1-2-1 clinics for those most in need. Of course, we have a lot of fun too and run regular family activity days where FASD families can meet and enjoy a fun day out with like-minded individuals.

As a member of the FASD UK Alliance we also link up with other charitable FASD organisations all over the UK in working to the same ends. You will also see a great deal from them throughout FASD Awareness month.

2. What sort of needs and challenges do children with FASD present with in primary school?

Can I firstly thank the Hamish & Milo team for helping spread our FASD #BeAware message through your blog. At FASD Awareness Charity, our aim is to support the prevention of alcohol exposed pregnancies and to improve the quality of life for those living with Foetal Alcohol Spectrum Disorders (FASD) and their parents and carers. Our vision is to be a strong and effective voice for individuals and families living with FASD, while supporting initiatives across the UK to promote prevention, diagnosis, intervention, and management.

My role as CEO of FASD Awareness Charity is to help our founder Tracy Allen and our amazing team to achieve our aims. FASD is an irreversible brain damage and is the most common cause of neurodisability in the Western world and presents around 3-6 times the rate of Autism Spectrum Disorder in the UK. There are more children born each year with FASD than with ASD, Spina Bifida, Cerebral Palsy, Down Syndrome and Sudden Infant Death Syndrome (SIDS) combined, and yet the condition often remains hidden or misunderstood by the wider population. With awareness in the general public still critically low, the demand for education in key sectors – specifically those who are likely to engage with individuals on the FASD spectrum in a professional capacity – is clear. Around ¾ of children in the care system are deemed at risk. It has been estimated that individuals with FASD are up to 40 times more likely to become involved with the criminal justice system. The estimated cost of FASD to the UK is £2 billion per year.

Our charity run parent/carer support groups, monthly webinars, FASD youth and adult friendship groups and offer 1-2-1 clinics for those most in need. Of course, we have a lot of fun too and run regular family activity days where FASD families can meet and enjoy a fun day out with like-minded individuals.

As a member of the FASD UK Alliance we also link up with other charitable FASD organisations all over the UK in working to the same ends. You will also see a great deal from them throughout FASD Awareness month.

3. How do you think this condition impacts the emotional wellbeing and mental health of children at this age?

Through our FASD Youth and Adult Friendship groups we have gleaned a lot of ‘lived experience’ information about their personal journeys through primary school. There are many secondary disabilities that can result from a negative experience in primary school. They can include low self-esteem, anxiety, depression, conduct disorders, eating disorders and some have reported posttraumatic stress disorder. These secondary conditions can follow them into higher education and then transitioning into adulthood with often dire consequences.

However, it has been proven that with the correct wrap around provisions and a person-centred approach, positive outcomes can be achieved.

Many FASD individuals that have had a positive experience in primary education discover they excel in creative arts, music, have athletic abilities and mechanical skills. Children with FASD do best when their individual strengths are recognised and they can include being, generous, helpful, willing, friendly and outgoing, affectionate, highly verbal and bright in some areas.

4. Can you share some examples of excellent support for a child with FASD?

Students with FASD do best in a structured environment with a consistent daily routine. Teaching and learning strategies should always be linked to outcomes like being healthy, staying safe, enjoying learning and achieving and making a positive contribution in class.

Students with FASD will require empathetic, reflective teachers and learning support assistants who are willing to personalise learning in order to provide a practical and multi-sensory approach to learning. Some of the most common examples of good practice for a child with FASD include:

  • Preferential seating due to common hearing and vision problems

  • Assistive devices or assistance in class due to poor coordination

  • Extra time to do in-class and homework assignments

  • Learning support, especially in reading and maths

  • Support to help develop positive relationships with their peers

  • Working to an EHCP plan to support them

  • Adopting a holistic approach which builds on the child’s sensory strengths

  • Providing sequential sensory experiences

  • Demonstrate rather than describe new techniques and be prepared to repeat demonstrations, instructions, rules and concepts often

  • Prepare the child for new concepts by providing them with any new vocabulary beforehand to practise and learn

  • Provide opportunities for small group and 1:1 work where possible and construct a personalised learning plan based on the child’s strengths and interests (usually in the areas of practical and artistic ability)

  • Be realistic about expectations

  • Ensure that the child has understood instructions and directions. Say their name before giving instructions and directions.

  • Ask the child to repeat what you’ve said to them back to you in their own words

  • Ensure that language used is simple, positive, concrete, and free from jargon, sarcasm or idioms

  • Provide visual aids if necessary, as students may not always respond to auditory input alone.

It is important to remember that children with FASD will need to be taught skills which other students will learn quickly by observation and peer interaction. Teachers and support staff frequently add to and adapt their own strategies to the individual as this will lead to better outcomes.

5. What sort of support do families need from schools?

Parents and carers are a child’s first educators and their role in their educational journey should be respected. For children with FASD the family structure may consist of foster or adoptive parents as well as, or instead of biological parents and sensitivity about possible attachment difficulties is required. If the child is living with biological parents, sensitivity and understanding about how parents may be feeling about their child’s disability is key.

Children with FASD will often present with a different set of needs in school than at home and parents/carers may have many concerns about how their child will manage through the school day. These concerns should always be taken seriously as it is important that parents/carers feel that they have been listened to and their concerns addressed. It is important that children with FASD receive consistency of approach and language in both home and school setting as this will help them to make sense of the world and simplify the number of things they need to remember.

We always remind professionals that the parents/carers are the FASD specialists as they are living with the condition on a daily basis.

6. What are the key messages you would like teachers to hear in relation to supporting children with FASD at school?

Many children do not receive an FASD diagnosis before the age of six and therefore primary school teachers may be the first to identify symptoms that align with Foetal Alcohol Spectrum Disorder. The recent FASD Nice Quality Standards will go some way toward seeing an increase in children being diagnosed with FASD and this will escalate in the coming years. Primary school teachers can help their FASD children by:

  • Understanding that FASD is irreversible brain damage.

  • Understanding that FASD is a spectrum, and as such, each child is individual and presents in a different way.

  • Working to the EHCP with SLT, SENCO, therapists and listening to the parents/carers and work on strategies together.

  • Presenting information in clear, brief, and simple segments.

  • Reducing distractions in the classroom.

  • Using visual materials.

  • Announcing schedule changes and transitions well in advance.

  • Using small-group settings when possible.

Finding the best strategy for children with FASD may take time. Assessing childrens’ unique strengths, praising them for their efforts, and providing a supportive environment can go a long way toward helping them do their best in school.

As a teacher myself, I understand the passion that drove us all to want to teach in the first place. Finding a way of communicating with every child is the challenge we face daily. However, the joy of connecting with an individual after trying different techniques to explain a point. You can see it in their eyes that they ‘get it’, they understand, it is so rewarding. That is what we strive for.

To find out more about how Hamish & Milo Wellbeing Resources can help and support your children please get in touch.

Author – Siobhán Garrett

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