The story of how the extraordinary patience of his helpers, and the consistent, caring use of Tacpac provided the safe container for Simon to find a way to communicate and trust.
By Stuart Gent and Wendy Newby, Teachers at St Rose’s School.
“I started working with children with special needs as a night nurse in a residential school. During this time I went to university and trained to become a teacher. After 10 years of mainstream teaching I returned to teaching special needs and disabilities. This is when I completed my masters in learning difficulties and disabilities. I am now the deputy head at the Shruberies School Stonehouse Gloucestershire, a trustee and a member of the editorial board for the journal PMLD LINK.”
Emotional numbness and touch aversion: Simon six years ago
(written by Wendy)
I started working with Simon a little over six years ago when he was eight years old. At the time he joined my class with five other children who had severe, profound and multiple learning difficulties. It soon became clear, on reading about Simon through his statement of needs, that he had had a very difficult start to life. At the age of 18 months old he had contracted meningitis that left him with multiple learning difficulties and a visual impairment. This resulted in his being unable to walk or talk. Subsequently, Simon has become a Looked After Child and is now in long term foster care.
At this time Simon had a huge aversion to any type of touch, even functional touch. He was intolerant to the close proximity of people and objects. He would spend most of his time rocking in his wheelchair, side to side making no eye contact with anybody or anything. He appeared to be emotionally numb. He never cried, smiled or showed any degree of pleasure. As his teacher, I was initially uncertain how to address the issue of touch as well as the presentation of his curriculum work. It was at this time that I became aware of Tacpac. I arranged for Simon to have a daily session in the school’s sensory room. Initially Simon’s response to the stimulations were as predicted, he was very distressed and would even go as far as screaming.
The first year: Simon begins to accept touch, but only in Tacpac sessions
After a month of daily sessions of Tacpac, it was then reduced to twice a week. At this stage he had started to relax more during the sessions, showing glimpses of anticipation and some eye gazing. Simon at this time was still rocking side to side. He became more relaxed during the sessions because of the familiarity and consistency of the routine: the same room, the same member of staff, the same music and the same tactile stimulation. This growing acceptance of touch was not generalised outside of the sessions.
The next 2-3 years: the sessions become an emotional anchor for Simon
Over the subsequent months small changes were made to the routine, i.e. different staff and different positions e.g. out of his wheelchair and at times in different rooms. I did this, as Simon’s teacher, to help him begin to generalise this tolerance of touch and closeness of people that he exhibited during the Tacpac sessions. Gradually, during more sensitive sessions in the classroom, Simon’s rocking and lack of eye contact eased. This was only seen when the classroom was quieter and when time was given to him by the staff. However, any prolonged interruptions such as school holidays resulted in Simon returning to his original state of defensiveness. This resulted in us returning to the structure of the sessions. This cycle continued for two to three years.
The 4th and 5th years: beginning to accept more touch outside sessions
Around this time it was observed that Simon was making little steps forward in his all-round acceptance of touch, as well as in his Tacpac sessions. At home he was a lot less agitated to touch, for instance when having his hair brushed. At school we were able to successfully make small changes. We were able to move onto the second Tacpac level. Even from the start Simon was quite at ease with the experiences and he didn’t show the distress that he had showed a few years before. This led him to become more tolerant of objects placed on his tray and of hand over hand exploration during everyday lessons.
This year’s revelation: Simon offers touch, makes eye contact, seeks objects, shows feeling
We have now entered the sixth academic year that Simon and I have used Tacpac together. He has only just started to work through unit three. This has been a long term approach to meet his individual needs. I have continued to use Tacpac for this length of time because when he experiences a prolonged time without the sessions he shows signs of regression.
Simon is now making some good eye contact, accepting certain levels of touch and has been known to deliberately reach for objects and even rest his hand on a member of staff’s arm. This has been truly delightful to see as Simon now displays his emotions, makes it clearer when he is happy and when he is sad. This ability to show his emotions and acceptance of touch is generalised beyond not only his class life but also to his home life.
Communication and relationship: Simon now
(written by Wendy)
I had the pleasure to go into a Tacpac session with Simon and his assistant. It was, I truly believe, a special time for Simon.
The clear structure appeared to cue Simon into the session and his reactions began to change. Whereas initially he held his hands up tight to his body and moved head from side to side, as soon as the music started and the tactile experience began he started to react. He showed a preference to the variety of touches he was experiencing. It was obvious that his hands were more hypersensitive than other parts of his body and that he preferred the rhythmic tapping rather than things rolling across his hand. The teaching assistant responded to Simon’s non verbal communication with respect, altering where the touch was experienced when Simon indicated displeasure. Simon was communicating! Simon was empowered to change an aspect throughout the session, he was the leader. The change in rhythm, pace, pitch and dynamics of the music appeared to give Simon an auditory clue to which touch he was about to experience. The music was an integral part of the whole experience as it also organised the teaching assistant.
The miracle of trust
The final part spoke volumes in the way that Tacpac has affected Simon’s life. During this part he was wrapped in a blanket, the teaching assistant’s face was just inches away from his. Simon began to actively seek eye contact from his teaching assistant bending his head so he could look into her eyes. He repeated this eye contact; his arms relaxed in his lap, his vocalizing stopped and eventually he closed his eyes and fell asleep. Not only had he tolerated closeness with his teaching assistant, she was so at ease he slept.
Tacpac is a sensory communication resource designed to help communication, social skills, sensory and emotional development for those who have sensory impairment.