Jeans for Genes Day 21 September 2018


Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.

Monies raised on Jeans for Genes Day fund the work of the charity and provide grants to organisations for projects that aim to transform the lives of children with genetic disorders.

Supporting our network through


FHS child thinks being bullied is normal

One of our members reports that their child was bullied throughout Nursery and Primary School. The child had a formal diagnosis of Floating Harbor Syndrome at the age of 4, yet teachers would punish the child for not listening in class or not responding appropriately to instructions. The child in question also has an intellectual disability, a diagnosis of ADHD, amongst other complex needs –  specialised support was denied to the child throughout their schooling. Floating Harbor Syndrome was laughed at by professionals, all because of its name! Children threatened the child, verbally and emotionally bullied the child, and sadly, they were hit physically by other children in the playground and on the journey home. The child could not express their feelings to anyone for years, as they have social communication issues alongside their Learning Disability. The schools could not do anything, as the child was unable to recognise the people responsible, therefore washed their hands of the problems that continued for 8 years.

This all happened in mainstream education in Scotland.

Mainstream or Special School?

As I have mentioned, my son aged 20 was diagnosed 3 months ago, and I am now finding the pieces of the jigsaw slotting together.

Miles was born with low birth weight, the longest eyelashes to make every girl jealous and hypospadias; mis-alignment of the urethra.  Within the first 12 months of his life he had 11 ear infections resulting in constant antibiotics, which led to glue ear, speech delay and finally a diagnosis of moderate learning disabilities at the age of 6.  Many of you will have seen the list of ‘markers’ and recognise all of the above.

With a diagnosis came the recommendation of a placement at a special needs school.  I know there has been some discussion around schooling, so I will talk through some factors which I recommend you consider.

Learning disabilities does not necessary mean only delays in academia.  Miles experienced inter-personal skills, inappropriate behaviour, motor skills (hand/eye), communication processing (following verbal instructions).  All of this attributed to the fact that whilst the eldest in the class (he had been held back a year due to speech delay), his peers progression far exceeded his by the spring term of Year 1.  Therefore the decision as to whether to accept the placement was easy.  All I can say is that by the end of the first term in special school, in a class of 12 pupils with a teacher and an LSA, with provision for 1-2-1 or 1-2-2 support throughout the week, he was a different child.  Excited to be going to school, homework set that he could understand and complete, teachers that understood his needs, who developed him and allowed him to grow at his pace, not the pace expected nationally,

So I will ask you?  Is your child struggling to maintain the age related expectation in school, does your child find making friends, expressing themselves, being attentive in class difficult?  If so, then a discussion with the school should happen at the earliest convenience.  Your child may be offered a statement of educational needs, which could support them in mainstream, and whilst in primary, this may well be enough.  I know from experience, that if Miles had continued in mainstream, then upon moving to secondary, it would have been a worry for both of us. If the EHCP as it is now known (Education and Health Care Plan) is considered permanent, then your child is entitled to free full-time education until 25.  Miles is now in his 5th year at college, taking a course on skills for successful employment, which includes Maths and English.

Having an EHCP will open many doors, both financially and leisurely.  I will explain this in my next post.



Education Suggestions

Remember the 5 ‘R’s – Learning by visual representation, routine, repetition and reinforcement/reward with praise.

Representation: Children with Floating Harbor Syndrome respond and learn using touchable props. When teaching maths, use objects to help build mental representations for the child. Visual learning is key to their cognition. Making sense of numbers and how they interact depends very much on this strategy. Using fingers should be encouraged also; anything that makes it interesting and fun. For reading and learning phonics, the use of pictures is important. This need for representation of objects and pictures is required throughout their schooling life; nursery right through to secondary/college.

Repetition: The set educational curriculum has to be adapted specifically for the FHS child. This has been reported in many cases and should be adhered to where possible. Typically FHS children really struggle to learn at the expected levels of progression set by Local Authorities in the UK. It takes years for the child to grasp the basic concepts of numbers, letters and the meaning of school. If the child struggles in Primary 1, they will be overwhelmed in the next year of Primary 2, therefore be prepared for covering the same material each year until there is a fuller understanding. It is not about going backwards in learning, far from it. Repeat the work and move up a notch each time, perhaps moving a reading book up to the next stage or asking more questions in a workbook. The FHS child will respond to recurring themes and gain in confidence and self-esteem and if they are accomplishing more each time then this is great; if not, go back to the work where they started and build up again. Repetition is closely linked to Routine, which is looked at next.

Routine: There are similarities with children on the autistic spectrum, in that the FHS child needs to have a routine and that if there is to be change, they are told about it in advance (and repeat). They expect life to be the same and can appear anxious and lack in confidence when challenged with something unexpected. If they are used to tackling a task in a certain way, then this is what they are confident with and crucially feel secure about, therefore if change has to happen, approach this in small steps, constantly reassuring the child that they can succeed. Strategies, including photographs and pictures to provide a visual plan of the day’s activities to avoid anxiety.

Reinforcement/Reward: Praising a child for good work done is well received by all, but children with FHS need constant praise, encouragement and reward. In this regard, reward comes from achieving set goals; for a teacher this could mean moving to a new reading book or by giving the child a ‘well done’ sticker. If the child is not progressing at the pace which the teacher sets, then go back to the beginning as stated in Repetition. Withholding or denying the child access to routine events, like break time or fun activities, will have a detrimental effect on the child, which should be avoided at all costs. Their understanding of why they are being punished is not the same as with average children. Learning levels will increase and decrease and there is no intention to deviate from the expected levels, rather they are struggling or are overwhelmed by the work.

It is extremely important to have your child assessed by suitably qualified professionals who are familiar with Floating Harbor Syndrome and the often ‘invisible’ issues that the child faces in their experience in an Educational environment. Specialist Schooling is advisable, as Mainstream Schooling often lacks the expertise required to properly manage the care of the FHS child, both emotionally and academically.

Thank you all

Over the last 18 months, there has been a massive increase in the number of parents and professionals getting in touch with us here on the website to ask about Floating Harbor Syndrome.

As more children are diagnosed, more information is shared on their development and in turn we strive to pass this on to as many people as we can. Some parents wish to remain anonymous and therefore do not wish photos of their children to be published anywhere on the internet, and we respect this fully.

Thanks for supporting our children