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September 3, 2009

Down’s Syndrome & Sensory Processing Disorder

Since the Synergy Center will be looking at the Sensory Processing of children and adults’ with difficulties, regardless of what their diagnosis. I will continue to look for examples of how Sensory Processing Disorder can co-exist. When looking at these different scenarios I will be pulling from doctors, therapists, researchers, and parents. Until tomorrow , continue doing well in all you do.

“Out of my greatest dispair, was to come my greatest gift.”
~Rhonda Byrne~

Down’s Syndrome & Sensory Processing Disorder

I am writing to highlight awareness of Sensory Processing Disorder and Down’s syndrome as this is something which affects my daughter quite severely. In fact if she only had Down’s syndrome life would probably be very different!

Does your child:
starbullet.png resist messy play or maybe doesn’t realise they have a dirty face?
starbullet.png dislike seams in socks or refuses to wear certain materials?
starbullet.png avoid playground equipment – maybe even fearful of it?
starbullet.png crave movement, is full of excessive energy?

Maybe your child is constantly crashing, stomping, deliberately running into things? Or is your child seemingly unaware of where their body is in relation to other objects, maybe they are stiff and uncoordinated or don’t know how hard to push or pull an object. If so it is likely your child has some degree of Sensory Processing Disorder.

Sensory Processing Disorder (SPD) co-exists with many learning disabilities in particular Autistic Spectrum Disorder (ASD). However having SPD does not necessarily mean a child will be on the autistic spectrum. Basically it describes an inefficient sensory system (and is also known as sensory integration dysfunction). Although many of us are familiar with the traditional five senses; sight, sound, touch, taste and smell – there are in fact seven senses – the other two are: vestibular (movement and gravity) and proprioception (muscles, joints and ligaments).

If you watch a small child learn a new task, initially a great deal of concentration and effort are noted. The task appears clumsy but as he continues to “practice”, his skills become more proficient and not only has he mastered the task but will continue to make it more challenging. This is sensory integration.

A child with a sensory disorder gathers information from sight, sound, touch, movement and pull of gravity like any other child. However, when the data enters the brain, it is not organised or processed correctly. As a result, the brain sends out an inappropriate response. The brain can respond in two ways: Hyporesponsive – in spite of large amounts of sensory input, the brain fails to register and doesn’t respond to input and Hyperesponsive – the brain “short-circuits” and registers sensations too intensely. Children can experience both responses and this impacts hugely on behaviour and learning. Some children go into the “Flight or Fright response”, the brain records this as danger and the child reacts by screaming, pulling away, or avoiding this touch or sensory input. The response is comparable to walking down an unfamiliar dark alley at night. All of our senses are on “alert” in order for our body to respond to danger.

Finding out about SPD has been a journey in itself for me and it was only by taking my daughter Megan to a private Occupational Therapist who specialised in Sensory Integration that my “light bulb” moment came.

I had always thought Megan “different” to other children with Down’s syndrome, she found it difficult to settle and learn, she had strange repetitive habits, she disliked certain materials or refused to wear clothes, she would move constantly – touching everything and everybody to the point of annoyance, she would throw objects indiscriminately and pinch herself and others. Later on her challenging behaviour became self-injurious to an extreme level; this was compounded by ear pain. In fact, many of her sensory problems could also be attributed to her chronic glue ear (as the middle ear is greatly affected by the vestibular sense (movement/gravity))

It is worth pointing out that many children experience the behaviours I’ve described but they are able to regulate them or some grow out of them (some of the behaviours described are developmental and occur in young children anyway).

“Keep in mind, sensory processing functions on a continuum. Please understand that we all have difficulty processing certain sensory stimuli (a certain touch, smell, taste, sound, movement etc.) and we all have sensory preferences. It only becomes a sensory processing disorder when we are on extreme ends of the continuum or experience “disruptive, unpredictable fluctuations which significantly impact our developmental skills or everyday functioning” (taken from

Basically Megan is at the mercy of her body and how it is functioning on that particular day.

For a long time I believed Megan had a dual diagnosis of DS/ASD though I now realise this is not the case. My private OT has confirmed Down’s syndrome and SPD, though the NHS OT’s are extremely reluctant to confirm this. OT provision through the NHS is scarce (like most therapies) and for children like Megan, Sensory Integration (SI) Therapy provided by a fully qualified Occupational Therapist specialising in SI is a necessity. It is all about movement and regulating the body’s needs. In the meantime I take her privately when I can and gather information to try and understand it.

This is a little known and misunderstood condition which can occur in children with and without learning disabilities. I would encourage anybody who works with children to read “The Out of Sync Child” by Carol Stock Kranowicz. Many professionals have often not heard of this condition which can be extremely frustrating. Many believe these behaviours are part of a learning disability and it is not necessary to separate the two. I believe differently.

Before I can tackle the issues of my daughter’s learning disability; (her Down’s syndrome) – she has to be able to sit still and learn. To take part in society she must be able to not run up and hug strangers or hit, pinch or pull the hair of her fellow classmates or classroom assistant. Parents and professionals need to become “sensory smart” and recognise what it is Megan’s body is craving when she starts to throw herself at strangers or when she tips her head up and starts laughing hysterically. Unfortunately behaviour which begins as sensory then becomes learned behaviour and Megan will use this to her advantage e.g. threatening to injure herself to gain attention or distract someone. Therefore it is imperative behaviour specialists also need to recognise sensory integration difficulties and be able to separate what is sensory motivated and what is attention seeking/demand avoidance.

This is part of the reason I’m trying to highlight this issue and perhaps make contact with other parents to whom this might sound familiar. There are checklists which can help determine whether your child might have Sensory Processing Disorder; many children with DS will have some sensory problems but the main question is whether it disrupts everyday life. These can be found on SPD network websites and also in “The Out of Sync Child” or “Raising a Sensory Smart Child” by Lindsey Biel.

I would love to hear from anyone who can identify with what I’ve been writing about.

Life with Megan is certainly challenging. She is a charming and extremely smart young lady – she is nine now. She recently underwent major ear surgery and certainly has had her fair share of medical problems, mainly ENT problems and also eye surgeries – though she bounces back with ease.

In January 08 she pulled all the hair out of her head and began extreme self injurious behaviours – we believe caused by ear pain. She was put on a long term antibiotic to prevent recurrent ear infections and we waited for her ear surgery which took place in September 08. Since surgery her hearing has obviously improved as she is copying lots of words and her speech is improving nearly everyday, she has also been ear infection free for 3 months which is a record for her!!

She is mischievous but also kind to her baby brother. She loves to watch Mr Tumble and is very proficient at her signing (she should be – mummy is a local makaton tutor!). Megan loves to sing and dance. She enjoys swings and slides and adores going to the park or for walks on the beach with daddy.

We try and get through the challenges her SPD brings and also the behavioural issues that go with it. At times it is a hard lonely road in particular because sometimes no-one seems to understand it and explaining it can be confusing!

Many thanks

Claire Lively, Mum to Megan

…..and as always we welcome your input, feedback, and commentary here at Synergy Center Corp.

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