Help raise awareness of Sensory Processing Disorder and Down’s syndrome! SPD is not just related to Autism!

My son has been fighting this battle since we first discovered he had SPD 6 years ago. This has made it a challenge for him in his learning, his social skills, and his over all happiness. It has been a challenge to us since we are unable to provide him therapies outside of school and home.

What is Sensory Processing Disorder?

Does your child:
- resist messy play or maybe doesn’t realise they have a dirty face?
- dislike seams in socks or refuses to wear certain materials?
- avoid playground equipment – maybe even fearful of it?
- 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: Hypo-responsive – in spite of large amounts of sensory input, the brain fails to register and doesn’t respond to input and Hyperresponsive – 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 us. I had always thought that Christopher was ”different” than other children with Down’s syndrome, he has always found it difficult to settle and learn, he has strange repetitive habits, he is very tactile defensive , he moves constantly – touching everything and everybody to the point of annoyance, so much so that he has been diagnosed with ADD and placed on medication.  He has experienced such challenging behaviours as aggressiveness and becoming harmful to himself and others. It is worth pointing out that many children with Down syndrome experience the behaviours I’ve described above but they are able to regulate them or some grow out of them (some of the behaviours described are developmental and occur in all young children anyway).

Keep in mind, sensory processing functions on a continuum.  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” www.sensory-processing-disorder.com.

Bottom line is everyday is a challenge for Christopher and his days rely on how his body is functioning on that particular day.

For a long time I thought that Christopher had a dual diagnosis of DS/ASD I still believe that he is somewhere on that spectrum. However we now now that his major barriers in development are this SPD. Sensory Integration (SI) Therapy provided by a fully qualified Occupational Therapist specialising in SI is a necessity. However, we all know that unless properly insured this is not always possible. It is up to the parents to become educated and incorporate it into everyday living. It is all about movement and regulating the body’s needs.

SPD is  misunderstood and very much overlooked by the medical community in relations to children with Down syndrome. It is a condition which can occur in children with and without learning disabilities. If you have never read  “The Out of Sync Child” by Carol Stock Kranowicz I encourage you to do so. Many professionals have often not heard of this condition which can be extremely frustrating. Many believe these behaviours are part of a learning disability (Down syndrome) and it is not necessarily something separate. I believe differently.

We have recently been told by some wonderful professionals at Hope Haven Children’s Clinic that in order for us to begin addressing Christopher as Down syndrome we must address the immediate sensory issues. In order for him to function in society he must be able to control his impulses in public, in school at home!  Parents and professionals need to become “sensory smart” and recognise the signs of of SPD and how to address them. Unfortunately behaviour which begins as sensory then becomes a learned behaviour and Christopher will use this to his advantage e.g. screaming, throwing himself on the floor, hitting and banging an object or himself, 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 raise the awareness with professionals and with other parents of Down syndrome children who are faced with this. There is a lot of information out there that 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 will be adding additional information on my site as well as a whole page just on SPD and Down syndrome. Please watch for it in the near future.

My Christopher is the sweetest and my loving child until that SPD shows it’s ugly face. We try and get through the challenges his 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! Even within family it is a hard thing to understand.

We have a long road but I know with my family, wonderful friends, and his fantastic teacher we can get control of this and help him lead a better quality of life.