By: Genie Price
Living with and raising a child with a sensory processing disorder (SPD), is challenging. With doctors not recognising the varied cluster of symptoms as an official diagnosis, leaves many parents feeling exhausted and alone.
Courtney speaks of her experience with sensory processing, how it has affected her family.
Rhys, he is smart and cheeky, loving and crazy funny – all at the same time. He flits between playing with trucks and cars in the mud to all things minecraft, and at 5, he idolises his older brother. With a mechanical mind, he’s a profound thinker and more often than not – must know specifics about speed, shape, size, and colour of objects present in the world around him.
Currently, in pre-primary, he recently participated in the sports carnival, where he ran well and came first in his race. He is most certainly kept busy through regular swimming and sports lessons during an average week. Needless to say, Mum Courtney is busy!
Sounds easy, right? When really, most days are more difficult than others for him.
Since Rhys, he experiences what clinicians throughout the world refer to as a neurological “traffic jam” by the name of Sensory Processing Disorder (SPD).
The term sensory processing refers to taking in information through the senses.
Although all children possess neurological processes, which help them to organise the information coming in from their environment, those affected with SPD misinterpret information through the senses, resulting in overwhelming responses to situations, baffling behaviours and occurrences of “silly” or “slower than normal” responses. This includes stressful meltdowns, which are hard to recover from.
SPD will affect 1 in 20 children in Australia, and according to experts from the Faculty of the Farber Institute for Neuroscience, will coexist alongside an Autism diagnosis in as many as 96% of children. However, most children with sensory issues are not on the spectrum. They can also be found in those with ADHD, OCD and other developmental delays or with no other diagnosis at all.
When asked about raising a child with SPD, Courtney describes it as “never a dull moment”. Then in a more sympathetic tone, “hard in the beginning, frustrating and challenging.”
Courtney and her family moved from Mount Isa, Queensland to Western Australia in late 2013, where at age three, like thousands of children his age, Rhys began daycare.
Recalling days where she had to take him to daycare in pyjamas, Courtney says “It was almost impossible to get him dressed, breakfast was a drama.” She confirms he had to have a blue plate, with an adult cup and spoon – in a specific spot and if she made toast and cut it into triangles and he wanted squares that would “put him out for the whole day.”
Incidences we take for granted.
“We say these [feelings] are small, but really to them [the kids], they are big.” She says, “It’s upsetting because we can’t and don’t know how to help them.”
Conversations with family and friends suggested he was “a typical boy wanting attention”, leading Courtney astray with thoughts of loss, division and at times, self-doubt. To any unsuspecting eye, it would look as though Rhys was playing up when really it’s highly likely he was equally as confused as the adults around him.
There were early signs which Courtney says she didn’t think about at the time as not being “normal”, as he was meeting all his other developmental milestones.
Some behaviours Rhys displayed were not unlike other infants, such as:
- He didn’t like baby swings, he was “petrified” she recalls.
- When it came to tummy time, he protested about that also, wouldn’t push up using his hands and much preferred his back instead.
- At times when he would walk out on to the gravel, he never appeared to notice it was rocky and hard, or notice when he got splinters.
Behaviours, which were not unusual for any infant or child, but when clustered together could forewarn of a sensory processing issue.
How they came to a diagnosis:
The Educators watched as Rhys would cry desperately when asked to put shoes on, even jumpers and long pants (in cold weather) became an issue. Courtney indicates “having just left a warmer climate it was hard to gauge what was happening with Rhys.” But, the Educators kept persisting.
The team documented his behaviour and gathered developmental observations over a period of several weeks. In an attempt to help, observations, which indicated sleep pattern, time, location, weather and how many children present were undertaken.
The team tried various teaching strategies with Rhys to gauge his responses, from redirection to reinforcement, and before long, ideas began to take shape. Around four weeks later, a decision was made to refer the Casey family to a professional for advice.
A sense of relief came as Courtney attended an appointment at the local health nurse, where a referral was made to see a child psychologist, then later, an occupational therapist. It was after the visit to the psychologist in February 2014, where the diagnosis of Sensory Processing Disorder was initiated.
SPD is complex. Each child is different. For Rhys, he struggles with an array of symptoms from disliking the dark and avoiding hugs, to wanting and almost needing a massage and deep/tight hugs to help calm him. His reactions can never be measured or predicted, therefore the way his family respond cannot always be the same.
Though the diagnosis for Rhys is relatively new, he continues to make progress each day. His school and teachers are supportive. Here he will continue to grow and develop among those who truly understand him and further develop everyday coping strategies to help him succeed.
Symptoms may include:
A child who is “under sensitive” may display:
- Constant need to touch, little understanding of personal space
- Be distracted by background noises and appear as though they are not listening
- Display high pain tolerance
- Be fidgety and unable to sit still
- Crave “thrilling”, fast movements
- Enjoy being tossed, jumping on furniture and trampolines
- Enjoy bouncing, spinning and crashing activities
- Like, and need tight hugs
A child that may be “over sensitive” may display:
- Sensitivity to lights and loud noise i.e. ambulance
- Refuse to wear types of clothing; may prefer to be naked
- Dislike surprise touch and avoid hugs
- Overly fearful of playground equipment – swings or faster-moving play things
- Limited spatial awareness – bumps into others often
- Genuine meltdowns, which are hard to recover from
Do you think your child may have sensory processing disorder?
The signs and symptoms for SPD are varied and extensive.
The list above is not inclusive and should only be used as a guide.
If you think that your child may be affected by SPD, seek advice from your local health nurse, general practitioner or child development centre as soon as possible. Early detection is key.