Alison Field, our Families & Professional Advisor, has authored this blog containing sensory information and references that she believes will be beneficial.
Children with Fragile X Syndrome can find it difficult to manage and react appropriately to information coming via their senses. This can be very overwhelming and cause a fight, flight or fright response along with different behavioural responses. Therefore, it is important to consider children’s individual sensory needs. Occupational therapists can be a great support in assessing and planning for specific sensory needs.
“Occupational therapy aims to enable children (and adults) to maximise their potential developmentally, physically, psychologically and socially, through the use of purposeful activity.”
There are 8 different senses to consider. In addition to the 5 well known senses (sight, smell, taste, touch and hearing), there are 3 ‘hidden’ senses:
These are:
- Vestibular – sense of movement, coordination and balance e.g. walking up and down stairs.
- Proprioception – awareness of where your body is in the space around us e.g. knowing
your feet are on the ground or how hard to grip a pencil.
- Interoception – awareness of what your body is doing inside e.g. feeling pain, temperature,
hunger and knowing whether you need the toilet or not.
Paediatric occupational therapists may look at the following areas when observing, assessing and planning activities/therapy for a child:
• Sensory awareness
• Gross and fine motor skills
• Cognitive skills e.g. memory, attention
• Visual perception
• Behaviour
• Social skills
• Play
Individual sensory sensitivities would be considered carefully by occupational therapists when they plan and personalise activities.
Sensory Integration Therapy
Working with an occupational therapist who is trained in Sensory Integration Therapy can be extremely valuable for those with Fragile X Syndrome. Sensory Integration Therapy includes structured exposure to sensory input, movement and carefully designed physical activities which are personalised and tailored to the individual. The activities should be fun and with a level of challenge, but should also allow the individual to be successful every time.
A Sensory Diet
Occupational therapists can also support those with Fragile X Syndrome by creating a ‘sensory diet’. These are scheduled sensory ‘meals’ e.g. a sensory activity three times a day and some ‘snacks’ e.g. shorter sensory activities scheduled between the ‘meals’. Sensory diets must be scheduled, personalised and specific to the individual’s particular sensory needs. The aim is that by providing sensory feedback throughout the day at regular intervals, individuals will hopefully feel calmer, more organised and be able to give attention to other tasks too. Sensory diets should stay in place consistently once they have been initiated.
The activities which are included in a sensory diet will vary between each individual child and based on an occupational therapist’s assessments and the kind of sensory input they feel a child would benefit from.
Possible activities which can provide sensory feedback
Below is a list of activities which may be suggested to provide sensory feedback, however these activities will depend on each child’s specific sensory needs and guidance from an Occupational Therapist should be followed.
Examples of activities include:
- Dancing
- Swinging
- Park play
- Sports games
- Jumping on a trampoline
- Space hoppers
- Big movements e.g. walking like a giraffe, stomping like an elephant
- Walking up and down stairs
- Wheelbarrow walking – head lower than rest of body
- ‘Crash and burn’ – running and falling into/onto a crash mat or beanbag
- Push and pull activities e.g. tug of war
- Swing ball, punch bags
- Tactile play e.g. finger paints, clay, playdough, shaving foam
- Carrying a backpack with a book when moving about can help children to feel more grounded
- Rolling/sitting on a yoga ball
- Wall pushes
- Self-hugs/bear hugs
- Carrying shopping or washing baskets (‘heavy work’ – this can aid feedback to brain via joints and muscles and have a calming effect)
- Gardening
- Deep pressure massage e.g. pressing down on shoulders
- Sand/rice/kinetic sand play
- Chair push ups
- Brushing arms, back or soles of feet
Resources/strategies which are sometimes used to support deep pressure/proprioception:
- Weighted backpacks/blankets/vests (ensure you have guidance from an occupational therapist about a safe weight for your child)
- Compression vests/sheets
- Body sock
- Weighted lap bag/toy animal
- Therapressure Technique/Wilbarger Protocol – deep pressure brushing technique (This is a specific technique which would need to be learnt from a qualified Occupational Therapist)
- Resistance bands
- Sitting on a chair which provides movement e.g. swivel chair
- Specially designed cushions to sit on
- Fidget toys
Examples of activities/foods if there are oral sensory needs:
- Crunchy and/or chewy foods
- Salty foods e.g. pretzels
- Sucking ice lolly or using a straw bottle. Sucking thick liquid like milkshake through a straw
- A ‘biting options box’ – a small tub to travel with the child. This can include items which will give oral sensory feedback like chew tubes, ‘chewellry’, crunchy snacks, straws etc.
Examples of activities if there are auditory sensory needs:
- Listening to music (consider what type of music depending on how individual is feeling)
- Headphones
- Ear defenders/noise cancelling headphones
Examples of support if there are olfactory (linked to sense of smell) sensory needs:
- Handkerchief with familiar smell/parent’s perfume or after shave
- Lavendar scent
- Aromatherapy oils
I hope this information is helpful. Please do consider seeking a referral for Occupational Therapy if your child does not already have this support and you think input would be beneficial. GPs and Paediatricians should be able to support with a referral and it is possible that a school nurse or Health Visitor may be able to give advice about a referral too.
You may also like to view our five part series about Sensory Issues and Strategies on our website:
Please get in touch if you would like more information about Fragile X Syndrome and sensory needs – alison@fragilex.org.uk
References, resources and useful links:
Fledglings are a not-for-profit shop which is part of the charity Contact. They sell many sensory resources: https://www.fledglings.org.uk/
Fragile X Association of Australia (FXAA) webinar about sensory processing with Occupational
Therapist Bev Kadish: https://www.youtube.com/watch?v=2rJ1pLJAfQ0
Fragile X Association of Australia (FXAA) webinar with Occupational Therapist Bev Kadish (for therapists): https://www.youtube.com/watch?v=BHYImbKraqw
Fragile X Association of Australia (FXAA) webinar with Occupational Therapist Bev Kadish (for parents and carers): https://www.youtube.com/watch?v=Uv_lxX6JM3g
Sensory Integration and the Child with Fragile X – Janette Bell: https://www.fragilex.org.uk/_files/ugd/038e80_3fef7ba07b014b0cb13c0d37ee093465.pdf
National Fragile X Foundation (NFXF) webinar with Tracy Muran Stackhouse: The How To’s of Sensory
Diets in Fragile X Syndrome: https://fragilex.org/webinar/how-tos-of-sensory-diets-in-fragile-x-syndrome/
Fragile X Syndrome: An Introduction https://www.fragilex.org.uk/_files/ugd/038e80_5160ee45e5134abaa924f36539fff732.pdf