J and his Vestibular Sense.

One of the senses J has problems with is his vestibular sense. The vestibular sense is tied up with the inner ear - the rather beautiful structure of which can be seen above. The inner ear is comprised of :

Three fluid filled semi-circular canals,
The vestibule
The cochlea ( shell shaped and the source for "can I have a word in your "shell like")

HOW IT ALL WORKS

The semi-circular canals contain tiny sensitive hair cells which detect movement and changes in the position of your head. This information is conveyed by the motion of fluid within the semi circular canals. As we move the motion of the fluid causes gelatin like lumps called cupulas to bend one way or the other, which in turn causes the hair cells to bend. The three semi circular canals are oriented at roughly 90º to each other, and so give you information in all three dimensions. So, if you were to close your eyes for a moment and tip your head back, you would know that your head is tilted even without having the visual input because your vestibular system provides that information.

HOW I THINK IT WORKS FOR J

If a child's vestibular system doesn't develop or integrate normally, they may be hypersensitive or hyposensitive to vestibular stimulation. If they are hypersensitive then they may have fearful reactions to ordinary childhood activities such as swinging on swings, running or jumping. On the other hand if a child is hyposensitive to vestibular stimulation (like J) they may well be constantly on the move in order to sense where they are in relationship to gravity. This explains to me why J sits and rocks at times while watching the television - the constant movement tells him where he is in space and gravity.

So in the normal course of events if you tip your head back with your eyes closed - you know where you are. J would experience this differently - he might wobble and become unbalanced when trying to perform such a task. In the same way I equally struggle with tasks like these. In relaxation exercises which ask for eyes to be closed I have to be seated on a chair or on the floor - standing with eyes closed does not come naturally and I feel unbalanced (and have been told I sway alarmingly). I guess I have SPD too - or have adapted to the SPD I had as a child. In the 1970s SPD wasn't known about in the UK - the best the various people who saw me (at the advice of teachers who were concerned about my activity levels and writing) could advise my Mum was that "children like your daughter have different brainwave patterns to other children"! J is a carbon copy of me according to my Mum so I have had several "lightbulb" moments with my reading about SPD and guess my vestibular system is not the best either.


When I observe J I am aware of a great deal of movement, even when he is seemingly stationary and concentrating upon a task there is activity. So sitting watching the television involves a regular need to move around or rock. This gives vital information to his brain about where his body is in space. I think that this is when I see J's vestibular problems most clearly as he unconsciously rocks. Likewise sitting at the computer involves standing up, sitting down, hopping from one foot to another, wriggling as well as opening and closing his mouth. During this time he may be completely zoned out and speaking to him will elicit no response. Interruption - either because the computer does something unexpected or an adult tells him it's time to come off the computer often elicits an aggressive response (usually a tantrum) but at school he cries.

I am watching J at the moment - he is actively playing, running up and down (a tiny 2 bed mobile home), dancing to music, rolling on the floor, jumping and spinning - totally active and stopping every now and then to observe himself in the reflective glass of the turned off television. He has a toy golf set which is being used as anything except a golf set - the golf clubs are "an axe" and he is "chopping down trees", they are "guns" and he is a "goody chasing after the baddies" - all normal stuff in fact. Now he is dancing again to Coldplay's new album and walking round and round in circles - enjoying the momentary dizziness although he tells me that "sometimes I don't get dizzy". A bit like a Great Dane J needs a good walk or run twice a day to help him use the pent up energy - if he doesn't have this he is quite impossible at bedtime!

So I await the results of Sensory Integration Therapy to see how I can support J and help him with overcoming the problems his vestibular sense causes him on a day to day basis. I will also be interested to see if there is improvement in the activity levels.
I have spoken to Lara - we begin on 1st September....

Lara’s Occupational Therapy Report

Lara's report is very thorough and notes that J "has definite sensory processing difficulties" and that "he also has difficulty with modulation (facilitation or inhibition of responses) of body position and movement, activity level and emotional responses. His behavioural and emotional/social responses also differ from other children his age. J's results indicate a mixed profile, however they suggest he is sensory seeking, emotionally reactive and has difficulties with attention and fine motor/perceptual skills".

To be honest I feel relieved - I've long known that J's behaviour was different to that of other children of his age and although I've suspected for some time that the reason was sensory integration disorder, (as proposed by Julia Nile the Foundation Years Advisor in Somerset) it was good to have these suspicions confirmed. On the other hand I also feel like crying – my little boy is struggling in school and is emotionally, behaviourally and socially immature when compared to other children his age. It doesn't take a rocket scientist to know that this cannot be good for his feelings of confidence, self esteem and self worth. He is different - not abnormal but just different; but I don't want him to be different - his life would be far easier if his behaviour and responses were like those of other children his age .... and my life would be easier too.

At the moment J likes everyone and to him everyone is a friend. He is happy to talk to adults and children regardless of where he is or what the situation. To be honest this is sometimes quite wearing; when he gets really over-excited he will literally tell anyone in the vicinity what he is about to do and try to include them in his excitement – more in the manner that a three year old who cannot contain his feelings might. But J is not three - he is approaching six and is also tall for his age – when he gets really over the top with excitement it is hard to contain him. Little wonder that the school have been raising concerns.

For me this raises many anxieties and questions:

• How will J cope as he gets older if these sensory processing difficulties persist?
  
• Will he always be behaviourally, emotionally and socially immature?
  
• How will J cope in school as he gets older if his responses remain immature?
  
• Is J more likely to fall victim to bullying?
  
• Are his sensory problems a sign of other difficulties (e.g Dyslexia).
  
• How will I and J's Dad cope as J gets older if the frustrated anger persists?
  
• Will the school be supportive?
  
• How do I explain J's immature behaviour to other parents in social situations?
  
• How do I help J to cope with his problems?
  

The last question I DO have some answers for as Lara has made some suggestions in her report and has been good enough to do some separate recommendations for the school.

Lara's recommendations:

• J would benefit from participating in a six week block of Sensory Integration Therapy run by a Paediatric Occupational Therapist with the aim of providing additional movement input and reducing auditory and tactile sensitivity. J's progress would then be reviewed.

• J would benefit from trialling a sensory cushion (e.g. Disc o Sit) or ball chair to provide him with additional movement input in the classroom. (I can tell anyone reading this that I will NOT choose the Ball chair as my clown of a son would use this as a reason to "fall" off on a regular basis)!

• Sensory Strategies should be used within the school environment to prevent negative behaviours and improve social skills. (Lara has made some recommendations for the school in helping J)

• J would benefit from further occupational therapy assessment to determine specific fine motor and visual perceptual difficulties that may be causing him to avoid handwriting tasks.
  

So my next task is to book Lara for the Sensory Integration Therapy and thank the higher powers that I am in a position to afford private treatment at the moment.

In my next post I will look at one of the senses J has difficulty with. This will help me understand his problems in greater detail.