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PANDAS and PANS Sensory Integration and Processing Challenges

a displeased girl screaming in anger

PANDAS and PANS Sensory Integration and Processing Difficulties

Sensory Systems:
Vestibular processing deficits, often low PRN
Poor postural control especially antigravity extension
Can slouch, slump – extension against gravity is tricky and tiring
Likes to move and not stop/fidgeting
Can have low levels of alertness when not moving
Scared of the dark without visual input to support spatial understanding
Altered spatial awareness
Poor grading of force
May appear ‘low toned’ – but normal Beighton Scale
Poor self-awareness – spatial; position in space and body awareness
ARFID and picky eating | often poor tactile registration and poor modulation
Super sensitive to some tastes
Altered temperature perception
Delayed cues re ill, nauseous, hungry, full or needing toilet
Hyper-responsivity to some textures and light touch eg certain fabrics/textures
May dislike light touch; skin, hair, tooth and nail care can be tricky
Dislike being touched or held when not on own terms
Slow or under-responsivity to pain,
Hyper-responsivity in far senses; smell, vision and hearing

The dyspraxic patterns seen can include;
Often bumping into things and people
Difficulty playing with manipulating tools and toys
Difficulty learning new/novel movement/motor skills
Fine motor co-ordination difficulties e.g., handwriting, bilateral co-ordination, poor tool use
Speech praxis difficulties include stutter, slurred words, poor pronunciation and timing
Ideation, planning and execution can all be affected.

Emotion Regulation
Rage
Anger
Irritability
Poor frustration tolerance
Difficulties with co and self-regulation
Poor self-awareness – emotional lability is common
Tearful one moment, raging the next 0-100 in 3 seconds

Executive Function
Poor processing speed
Multi-tasking is hard
Poor timing and sequencing
Poor concentration and focus
Slow to perform tasks
? observed difficulties with language processing
? observed difficulties with more complex and abstract problem solving that is age-appropriate

Fatigues easily and needs lots of reset time
May go ‘off legs’
Looks like have regressed

May need much parental encouragement and support
Lose resilience to trying new things
Low self-esteem

Older children
Self-loathing and disgust at self
Extreme fear and losing control of agency over the world
Awareness of personality change and burden on parents and siblings

[list developed by Kath Smith OT 2014 – 2021]

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RCOT Conference : Alexis Quinn | Awesome | Advocate | A voice

If you were not at the RCOT Conference, you have missed the opportunity to hear Alexis speak with powerful words about her experience as an autistic person being detained under the Mental Health Act, her escape to Lagos and her return to the UK to tell her story and advocate for improved support and care for autistic people within the mental health system.

It’s not too late to register for the RCOT Annual Conference, and with conference materials available for the next 6 months, the £99 registration fee, with a chance to hear Alexis’ story and her clear understanding of what OT can offer to the healthcare system, it’s great value for money CPD.

Here is a video of her speaking on Youtube.

 

 
 

Alexis’ Story can also be read in her book,

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Coffee and Chat: Ayres’ SI and Learning Disabilities

Tonight’s Coffee and Chat is all about Ayres’ SI and Learning Disabilities with special guest working in the field of learning disabilities across the lifespan.

Come and Listen to our practising therapists and experts explore assessment tools, the role of consultation and how to deliver services that draw on the theory and practice of Ayres’ Sensory Integration.

Join us tonight 3 March 2021 at 7.30pm.

Book your FREE place now on Eventbrite.

Read about the application of Ayres’ SI in Learning Disabilities on this reference and reading list below.

Papers here include from therapists, Ros Urwin, whose Master’s in 2005  was the first UK study to investigate ASI with adults with learning disabilities in the UK, our colleague Rachel Daniels, whose work in this field was the focus of a research project and Ciara McGill, who we had the pleasure to teach on the journey that led to her Master’s Study publication with Ulster University.

  1. Cahill, S.M. and J. Pagano. 2015. Reducing restraint and seclusion: the benefit and role of occupational therapy. American Occupational Therapy Association.

  2. Champagne, T. and N. Stromberg. 2004. Sensory approaches in an-patient psychiatric settings: Innovative alternatives to seclusion and restraint. Journal of Psychosocial Nursing 42(9): 35–44.

  3. Daniels, R. 2015. Community occupational therapy for learning disabilities: The process of providing Ayres sensory integration therapy and approaches to this population. Birmingham: European Sensory Integration Conference. www.iceasi-org

  4. Department of Health. 2012a. Department of Health review: Winterbourne View hospital interim report. London: Department of Health.

  5. Department of Health. 2012b. Transforming care: A national response to Winterbourne View Hospital: Department of Health review final report. London: Department of Health.

  6. Department of Health. 2014. Positive and proactive care: reducing the need for restrictive interventions. London: Department of Health.

  7. Gay, J. 2012. Positive solutions in practice: using sensory focused activities to help reduce restraint and seclusion. Victoria: Office of the Senior Practitioner.

  8. Green, D., Beaton, L., Moore, D., Warren, L., Wick, V., Sanford, J. E., & Santosh, P. (2003). Clinical Incidence of Sensory Integration Difficulties in Adults with Learning Disabilities and Illustration of Management. British Journal of Occupational Therapy, 66(10), 454–463

  9. Lillywhite, A. and D. Haines. 2010. Occupational therapy and people with learning disabilities: Findings from a research study. London: College of Occupational Therapists.

  10. Leong, H. M., Carter, M., & Stephenson, J. (2015). A systematic review of sensory integration therapy for individuals with disabilities: Single case design studies. Research in developmental disabilities, 47, 334–351.

  11. McGill, C & Breen, C. 2020. Can sensory integration have a role in the multi‐element behavioural intervention? An evaluation of factors associated with the management of behaviours that challenge in community adult learning disability services. British Journal of Learning Disabilities.

  12. Royal College of Psychiatrists. 2013. People with a learning disability and mental health, behavioural or forensic problems: The role of inpatient services. London: Royal College of Psychiatrists.

  13. Transforming Care and Commissioning Steering Group. 2014. Winterbourne View – Time for change: Transforming the commissioning of services for people with learning disabilities [Bubb Report]. London: NHS England.

  14. Urwin, R., & Ballinger, C. (2005). The Effectiveness of Sensory Integration Therapy to Improve Functional Behaviour in Adults with Learning Disabilities: Five Single-Case Experimental Designs. British Journal of Occupational Therapy, 68(2), 56–66. 

sensory integration leanring disabilities Ciara McGIll
Ciara McGill, Occupational Therapist

Click to access Reducing-Restraint-and-Seclusion-20150218.pdf

The effectiveness of sensory integration therapy to improve functional behaviour in adults with learning disabilities: five single-case experimental designs

Urwin, Rosalind and Ballinger, Claire (2005) The effectiveness of sensory integration therapy to improve functional behaviour in adults with learning disabilities: five single-case experimental designs. British Journal of Occupational Therapy68 (2)56-66.
 

Abstract

This paper describes a research project using a single-case experimental design (A-B-A), which aimed to explore the impact of sensory integration therapy (SIT) on level of engagement and maladaptive behaviour (measured through timed scores) and function (using Goal Attainment Scaling, GAS) for five learning disabled adults with tactile sensory modulation disorder.

Each phase lasted 4 weeks and consisted of 24 measurements in total. Individually tailored SIT was given twice weekly for 4 weeks during the intervention phase (B), immediately prior to each individual’s participation in his or her prescribed horticulture task. The changes between phases in engagement, maladaptive behaviours and function scores, measured as the difference between baselines and intervention, were analysed visually and statistically for each participant.

The intervention produced significant improvements in engagement for participant four, with a highly significant deterioration in scores for all five participants on withdrawal of SIT. All the participants’ maladaptive behaviour decreased significantly on the introduction of SIT. Although there was no significant change to GAS scores for four participants, participant four’s score improved significantly with SIT. The withdrawal of SIT resulted in a highly significant deterioration in GAS scores for participants one, two, four and five. This study may be the first to suggest that SIT is effective in improving functional performance in adults with a learning disability with a tactile sensory modulation disorder.

Click to access Resource-OT-and-Learning-Disabilities_0.pdf

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The Teenage Brain – a great new resource

Looking forward to following this new organisation, who appear to have some amazing resources from my first drop onto their website today.

https://www.ourteenbrains.org/

From their Founder…

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Your Mental Wellbeing and the Coronavirus

This can be a tricky time, but there are still lots of opportunities to look after our mental health. Here is a link to some fantastic advice from Mind charity with ideas about how to take care of your wellbeing during this time.

This information is helpful for those who might be feeling anxious about the virus or if you are wondering how you will cope if you need to work from home or self-isolate.

Read more here – Mind Charity, Coronavirus and your wellbeing