Otis’ story as told by his Mum
Otis has a Rare Chromosome Disorder (3q13.11q13.33 deletion) which means that a number of genes are missing from his 3rd chromosome causing Otis’ global development delay, short sighted vision, hypotonia, hypermobile knees and feet, mild obstructive sleep apnea, thin corpus callosum, feeding difficulties, unsafe swallow, silent aspiration and reflux resulting in a Gastro-jejunal feeding tube insertion.
Otis’ 3q13 deletion was diagnosed on 18th October 2013. We (parents) are not carriers of this chromosome abnormality.
He showed anxieties by crying, looking for reassurance from me (Mum) and wanting to be held.
We started Tacpac in 2013
We first met Amanda in October 2013 and started Tacpac sessions on 17th October 2013.
Otis watched with curiosity during the first session of tacpac, he was upset when the fan was used and was unsure about some of the actions done with the props, but settled. His reaction to the relaxation song has been most memorable for us. From day one he paused and sat still for the entire song and was deep in thought. This is extremely emotional to watch because Otis has a connection with the music, it helps calm him and he now shows a love for music.
My initial thoughts were “is this just a waste of time?”
During the first session of Tacpac I quietly sat near to Otis and I thought to myself, what is this all about? Surely, this is going to be a waste of time because of the household objects being used on Otis? However, as the first session progressed Otis became a little more interactive and seemed to enjoy the session. This was the first activity Otis could take part in for himself to enjoy rather than be sat waiting for hospital appointments. My Mum (Otis’ Grandma) and I cried at the first session due to Otis’ reaction to the relaxation song, we then knew Tacpac would be a memorable journey.
At his first session we immediately saw Otis relax during the relaxation song but he became more interactive during the following few sessions, showing interest in exploring the props and making new sounds. At his 5th session he became less anxious and more settled with the routine and the props. He also looked less at me (Mum) for reassurance. He also started to respond with sign language at his 7th session and signed ‘Tacpac’ (a sign I (Mum) had created for us to use).
Otis benefitted from Tacpac because his self esteem and confidence developed. He allows doctors to examine him (using a stethoscope etc) with ease and we believe this is because of Tacpac. Instead of pushing the doctor’s hands away and crying, Otis will try to grab the Stethoscope and use this on himself or the Doctor, he will smile and relax during most examinations. Tacpac has increased his confidence and improved awareness of his own body.
Otis’ Brother, Jago, was a little unsure about Tacpac when he first witnessed this. He questioned what Amanda was doing and said words like “Otis doesn’t like that” when in fact Otis did like it but Jago did not choose to join in.
After the first session Jago witnessed, I talked to Jago about Tacpac and why we do this and he became used to this. At the second session Jago witnessed, he happily joined in by using the fan, spatulas and mops on Otis.
We have tried Tacpac at home without Amanda and Jago excitedly joins in. This is lovely to see and the boys have a wonderful bond. Tacpac has become a part of our lives and is a positive experience which is important when there are many negative and challenging times that we have to face.
Tacpac has been wonderful for Otis
Otis’ Nursery staff use Tacpac at least twice a week with him. He continues to enjoy this and his confidence to use the props has developed. We should never have underestimated the impact Tacpac would have on Otis, this has helped him develop as a person. He has become aware of his own body and gained confidence in himself to communicate vocally, using eye contact, signing and by touch. It has been wonderful and we look forward to using this with Otis for years to come.
Tacpac is a sensory communication resource designed to help communication, social skills, sensory and emotional development for those who have sensory impairment.