Wednesday, January 11, 2012

Tuesday 10th January, 2012

Today was our first day at the STAR Clinic.  We met up with Dr. Kay Toomey, Dr. Toomey is the developer of the SOS (Sequential-Oral-Sensory) Approach to Feeding Program which can be used to treat feeding issues in infants, children, and adolescents. So of course, Miss Emma falls into that category.

Her first day involved lots of observations and investigations by the SOS/SPD team, which consisted of the head paediatrician, pychologist, speech therapist, feeding therapist, OT and a dietican.  We were placed in a room with lots of food.  Andy, myself, James, Jasper and Emma were sitting around a table with different food stuffs - and the room had a one way mirror from which the team sat on the other side to observe.  They wanted to see how she interacted with and around food, with her siblings and with us. From all their observations, they were aiming to work out a plan of attack for Miss Emma.  And some of the results even surprised us.

At the start, Emma was very sociable - as per normal.  She talked with all the adults and therapists and followed their instructions appropriately.  She went on to tell Dr. Kay that she drinks "muscle milk" to grow and have strong muscles, but knows that she is at food school to learn about food.

One observation that was made that while Emma is extremely co-operative, she clearly wants to please adults, especially us her parents.  As a result of this, Emma apparently engaged in tasks that were too difficult for her body.  She then "shut down" in response to the overwhelming stimulation and stared into space or began to seek out other avenues of aversion such as pulling her feet behind the foot rest of the chair, or tensing up her shoulders (what they call "proprioceptive input"). Proprioceptive input is the most calming on inputs, which is why doctors prescribe exercise for depressed patients because this creates proprioceptive input the body is craving.

Putting it in simple terms, Emma's feeding is a direct result of SPD (Sensory Processing Disorder), and we believe that a lot of the things that she is doing is by habit and not actually learning from it.  An example of this is the way that she licks her snakata biscuits.  She does not particularly enjoy it, but it gives us pleasure seeing her interact with food, and she shuts down when doing it, but it is a habit with her.  She is not tasting it, she is tolerating the behaviour.

There are 8 main senses, and these are:-

Emma is listed as severe because she is over or under what is considered normal behaviour in 6 out of 8 of these areas.  Though with the taste, she could be over reacting and under reacting at the same time, creating even more confusion in her brain.

From all these observations, it has been decided to start Emma from the very basics of eating.  Breaking it right down to the start and beginning again.  The way the clinic likes to start is by seeing children who wont eat as having poor learning experiences with food.  Many people do believe that eating is instinctual, but in reality, it is a learned behaviour.   And unfortunately this is common in early and micro prems (so before 30 weeks and below 1kg).  Feeding issues are normally presenting in children around 8 months of age, and unfortunately, most prem children are not seeing speech therapists or OT's at this stage in life, so the learning behaviour is not picked up as missing.  (Shows another flaw in the health system).

OK - so enough of all that heavy mumbo jumbo.  Emma is going to be taught to eat.  Break it right down to the basics and start again.  She is also going to learn about the physical properties of food.  With intelligent children it helps them if they know and understand the physical structure of food and what will happen and feel like when in the mouth.  

We were completely overwhelmed with information, but walked away feeling very positive and uplifted.  We are in the right place for Miss Emma - and these people know what they are going to do and how to do it.  Tomorrow is a fairly easy day with an OT assessment, but after that, the days are going to be long and tiring with lots of feeding therapy, OT and speech.  Not to mention food classes. 


  1. Best of luck! My son is 2.5 and has infantile anorexia. He stopped eating at 12 months and it has been a struggle since to get thim to eat.

  2. Sounds amazing, and really interesting Rozza. It certainly seems like you are in the right hands, from your description. Lots of love and strength from us xxx Luce

  3. Wow, what an amazing program. Our son is 8 and has Aspergers and Sensory Processing Disorder. He is most comfortable with dry foods. We would love to get him to eat fruits and vegetables or try any new foods.

    I'll be checking back to learn more about this program and see how Miss Emma progresses.