Making Sense

 

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Throughout Jenson’s various hospital appointments, we have heard the term ‘sensory’ used over and over again.  Jenson has always been hypersensitive; he has only really just started letting us hold his hands and touch his face, at the age of two.

At first, I didn’t know any different; I thought it was normal for a baby to be wary and resistant to a bottle even when they were hungry.  Jenson needed a teat to be the right shape, angled in the right way, fed by the right person.   The milk needed to be the right temperature and brand.  I just thought babies have their own little idiosyncrasies, and that he wasn’t particularly different from the rest.
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When the physio encouraged us to practice more tummy time with Jenson, it became clear that he had significant sensitivity of the hands, as he simply would not place them in front of himself to push up.  He became so distressed because he effectively had his face on the floor.  His chiropractor noticed that he didn’t have the ‘saving reflex’ that all babies are apparently born with; that is, if you lower him quickly to the floor he doesn’t put his hands out to protect himself.
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Still, we continued to get around these anomalies, and with no diagnosis we naively believed that all problems would be overcome in his own time.  However, his development diverged away further from his peers and his problems became more noticeable.
Despite the hypersensitivity, he was certainly a very sensory child! He responded to lights and patterns with excitement, and loved music.
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He became somewhat vicarious; wouldn’t do anything for himself but loved to live these actions through us… He would touch our mouths, poke our eyes, but would not let us near his own.  He would hold our hands and clap them, but we were not allowed to clap his.  He would happily put his own fingers in his mouth, but taking a spoon or finger near his mouth was impossible.
At two years old now, he touches us more than ever, and has a cute habit of coming in so excitedly for a cuddle that he will bite, slobber and lick!  He is getting better with his hands, and even lets us play ’round and round the garden’ and ‘this little piggy’ now.
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But everything is on his own terms.  We believe his sensory issues are at the heart of his food aversion, and this has developed into a full blown feeding aversion.  He drinks his formula as nothing more than a survival instinct.  He will enjoy the taste and flavours of foods under his own strict conditions; he holds them, they are solid and not flaky, wet, crumbly, and preferably with the packet still on.  Sounds silly, but the only way to get him to lick and enjoy chocolate is to ‘trick’ him into biting through a stealthily half-opened wrapper!
He has had numerous referrals and has proved to be an enigma to all.  The ‘try this, try that’ approach that we have patiently adopted for encouraging him to eat during these past two years, is running out of steam.   Now it is time for something radical. 
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We applied for NHS funding for specialist psychological/behavioural intervention but this was turned down, on the grounds of not demonstrating exceptionality.  Our paediatrician has now referred us to an occupational therapist who has specialist training in feeding therapies for children with sensory issues.  We are soon to embark on this course of action, and are staying optimistic about the prospect that this may hold the key.
Gastric surgery can wait, for now we are putting everything into fixing his pathways.
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Published by

tetraspecial

I was launched into the world of special needs on New Year's Eve 2012, on the birth of my son, Jenson. He is fabulous, sprightly and loving, and has redefined our lives. I am now a 'qualified by experience' PA, therapist, clinician, secretary, taxi, nurse, and in my spare time I am trying to be a good mummy. I work in an audit role for the NHS and along with my husband run an accountancy business from home. It's a busy household but Jenson's extra genetic material seems to have given us all extra special powers!

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