Certain senses can hit a nerve
Sensory issues often accompany autism or attention deficit disorder but sensory processing disorder is a standalone condition, writes SHEILA WAYMAN
WHEN CAROL Stock Kranowitz was a teacher of music and movement at a nursery school in Washington DC, she used to be puzzled by the occasional child who would not take part in the fun activities all the other young children enjoyed.
There was the boy who turned away, covering his ears with his hands, when music was played; the girl who lay on the floor “too tired” even to strike two rhythm sticks together; the boy who buzzed around the room while all the other pre-schoolers sat down singing songs. Their behaviour disrupted the fun for others.
“These children annoyed me. They made me feel like a bad teacher,” she admits in a subsequent book, The Out-of-Sync Child. They were intelligent and healthy and did not have any identifiable special needs; some seemed to misbehave on purpose, others were listless – the one trait in common was an inability to enjoy activities that children usually relish.
It was only after a paediatric occupational therapist, who was also a parent at the school, offered to give staff a 90-minute workshop on early identification of problems stemming from neurological inefficiency, that the pieces fell into place for Kranowitz.
What is known as sensory processing disorder (SPD) is where there is difficulty in handling information that comes in through the senses – it can cause a “traffic jam” in the brain, resulting in over-responsive children to have, perhaps, a complete meltdown, or under-responsive children to withdraw from what is going on around them.
Sensory issues are a common feature of autism or attention deficit disorder but SPD is a standalone condition.
The three core sensory systems that most commonly cause problems are the tactile system (sense of touch), the vestibular system, which is our sense of movement and where we are in space, and the proprioceptive sense which covers our muscles, joints and body parts.
“To say that a person has SPD, the person has to show problems with touch and/or movement.
“If a person has a visual problem or an auditory problem, that is not enough,” says Kranowitz who, after that initial workshop, felt she had a mission to help other teachers understand that children’s behaviour is filled with patterns.
“The child who complains about the tags in his T-shirt; hates foods like rice and crunchy peanut butter; doesn’t react well when somebody touches him unexpectedly so he is always punching the other kid when they are standing in line; wipes grandma’s kisses off his face” – that child has tactile over-responsitivity.
“What we are looking for is children who have repeated, constant, atypical responses to touch and/or movement,” explains Kranowitz in a phone interview from her home outside Washington DC, ahead of a visit to Ireland next month.
She will give a one-day workshop in Dublin organised by Sensational Kids, a therapy centre in Kildare where children with sensory issues are treated in a state-of-the-art sensory integration gym.
Its chief executive, Karen Leigh, says, “The Out-of-Sync Child is often the first book parents of children with sensory issues are advised to read.
“Early intervention for SPD is crucial, when there is still much brain development going on and to help avert a snowballing of difficulties.
“SPD is not something you grow out of, it is something you grow into,” says Kranowitz.
Many children with SPD are extremely bright, which confounds adults. They may love maths but can’t put one foot in front of the other and don’t have friends.
Their errant behaviour is not because they “won’t” but because they “can’t” and if it is affecting their daily lives, or those around them, a teacher or parent needs to act.
She tells parents to put on imaginary sensory goggles and ask themselves what stimulus is the child trying to avoid or what is he striving to get?
The first category, the avoiders, are the ones with their hands over their ears, or caps down over their eyes or who hide under the table; the sensory-cravers are the ones who are jiggling about all the time and climbing up the bookcase.
Physical therapy can greatly improve SPD, which has a wide range of symptoms depending on the type. If the condition is not recognised, it can go on to derail learning and cause psychological problems through low self-esteem.
Occupational therapists put children with SPD on a “sensory diet”, which is a programme of physical activities tailored to help over-ride their current sensory responses and develop new ones.
“Often techniques are the same for the over-responsive kid who is avoiding a sensation and for the child who needs more sensory input,” says Kranowitz.
Take swinging for instance: an over-responsive child, who is fearful to let his feet leave the ground, is introduced to the sensation very gently.
“At first it will be very scary; eventually that therapy builds neuronal connections which make it possible for the child to become comfortable with movement.”
For children who crave movement, the therapist would allow some spinning, but not as much as the child wants, before stopping the swing and pushing it back and forth in a different direction, or taking the child off and tipping him upside down so the head is in a dramatically different position.
Movement is key to improvements and some people would argue that it is no coincidence that SPD seems to be on the rise at a time when children’s lives are increasingly more sedentary.
“This is the big issue, are we over-identifying children or are there actually more of them?” asks Kranowitz.
“You will get experts who will tell you completely different things but my opinion is that our 21st century culture is adding stressors to children and we are not giving children the time, the play and the outdoor experiences that human beings need.”
“Containerised” child-rearing, whereby infants spend hours in their car seats – in and out of the car – because they are so convenient and safe, deprives them of the chance to squirm and wriggle on the floor, which aids brain development.
“Babies have to be on their tummies, babies have to crawl – if they don’t like to crawl then parents have to get on the floor with them, when crawling will be so much fun.”
She advocates plenty of chores for children, encouraging them to delight in the physicality.
“Heavy work activity is a term therapists use – watering the garden with a hose, brushing the dog, carrying the laundry basket upstairs.”
We are raising what she terms “loose and floppy kids”, who prefer sedentary activities and parents feed into that: “It is wonderful our kid is so smart, he likes learning Chinese . . .”
We tend to think intelligence is the most important thing for young children to have but it is not, she argues. Instead they need time to develop physically and socially.
“They will learn how to read – but right now they have to learn how to play.”
An extra year in pre-school can be very beneficial for some.
“A lot of kids with SPD process what they hear and see at a slower rate. The information comes in – they can make sense of it – but the neurons are connecting a little slower and we have to give them time.”
SPD, which was first identified as sensory integration dysfunction in the 1960s by occupational therapist A Jean Ayres, is not included in the current Diagnostic and Statistical Manual of Mental Disorders.
However, Kranowitz is “reasonably confident” that when the fifth edition comes out in May 2013, it will be “at least in the appendix, we are hoping for more”.
There are still sceptics, she acknowledges, and paediatricians do not learn about SPD at medical school – “because it cannot be fixed with medicine”.
Doctors may tell parents they are worrying unnecessarily and that their children will grow out of it.
“I want parents to be worried if their gut instinctively is telling them that their baby is not developing the way most babies should. I want them to keep asking questions – and they might end up having to educate the paediatricians.”
Carol Stock Kranowitz will present a one-day workshop, The Out-of-Sync Child – How Sensory Processing Disorder Affects Learning and Behaviour, at the Carlton Hotel, Dublin Airport, on May 10th. Cost €139. To book, tel 045 520900. For more information, see sensationalkids.ie
'HE HAD NO IDEA OF PERSONAL BOUNDARIES'
IT WAS an emotional moment for Paula when her eight-year-old son Mark performed in front of 200 people at a recent hip-hop show.
“I was crying so much I didn’t actually see him dance – I will have to wait until the video comes out!” she says. A couple of years ago, she could not have imagined her son would ever have the confidence or the co-ordination to do something like that.
From early on, Paula and her partner, who live in Co Kildare, worried about Mark’s behaviour. “When we went anywhere he wasn’t able to interact properly with other children. He would be really in their face; he had no idea of personal boundaries and would be very emotional at the smallest little things.
“He was slow to meet milestones – late to crawl, late to walk, late toilet training.
“Then there were little things we noticed that other children could do that he couldn’t do – like peg boards. Or if he went into a narrow hall, he would bang off the walls. We brought him swimming and he had no co-ordination at all. At home he couldn’t pick up a knife.”
He would get very frustrated and have awful temper tantrums. “You knew it was because he was trying to do something, it wasn’t out of boldness.”
However, the underlying issues were “masked”, she says, by having “glue ear” and he did not talk until he was three and a half. It was a speech and language therapist he was attending who suggested they should take Mark to an occupational therapist, but she warned that it would be a four- to five-year wait for a public appointment.
“We went private, there was no way we could wait,” says Paula. Within 10 minutes of their first appointment with an occupational therapist, she was able to tell them Mark, then aged three, had sensory processing disorder (SPD).
Paula was given a programme of activities to do at home. “Things that to him were so much fun, like rolling in a blanket, jumping on a trampoline, lots of water play, peg boards – he never realised what was going on,” she says. “The difference it makes is unreal.”
They bought him a giant teddy to hug to his heart’s content but also to show him how to do it gently. “He didn’t understand – he would be hugging his friends but he would actually be hurting them.”
When they went back six months later, all Mark’s scores had gone up about 40 per cent.
“As well as the occupational therapy, you have to put the work in yourself,” says Paula. “You can’t rely on the hour or two they are with the therapist.”
She kept him in Montessori for three years, so he didn’t go to school until five years and eight months. “He would not have been able for school.”
He was very jittery and couldn’t stay in the same spot for more than a minute. His co-ordination and balance were bad but they worked on that – they bought a skateboard and his father built him a playhouse with a climbing frame.
He started hip hop when was four, which is good for his co-ordination and concentration as he has to watch the teacher. He also does martial arts.
Through school, where he now has 90 minutes resource teaching a week on the basis of his speech and language assessment (SPD is not a recognised diagnosis for resources hours), he finally got a block of 16 occupational therapy group classes funded by the HSE, at Sensational
Kids in Kildare town. Since that finished, he has continued to go there privately, about once every two months.
“If we hadn’t done what we did I do not know what way he would be now,” Paula says. “Now his confidence is so high.” He has gone from not being able to play with other children, “to being the one they are all calling”.
They have not explained to Mark that he has a difficulty other children don’t have – they were afraid he would start saying he could not do things because of it.
“Whereas he keeps trucking along,” says Paula. “Later on we will tell him what he went through but at the minute he doesn’t need to know.”
Names have been changed.