Theo Lucas Kingsley Monk - congenital stationary night blindness, learning difficulties & autism. Theo Lucas Kingsley Monk:
Our beautiful boy

Theo Monk - severe & complex learning difficulties.

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Theo Monk - Newbold on Stour, Stratford on Avon, Warwickshire.

Theo Monk - congenital stationary night blindness(CSNB).
It was evident that his early history affected Theo's development. It would appear that he was deaf-blind for the first few months of his life, and had physical difficulties. These conditions affected his ability to feed, grow and have a sense of well-being. He was very distressed at times due to the reflux and, what I now recognise as lack of understanding of visual and auditory information. It took a long time to overcome these conditions to any effect. Theo’s development did not follow a “normal” pattern, as he was able to do some things, such as sit unsupported, before being being able to roll over.  He was also very delayed in reaching these milestones, with some skills being left out or incomplete, such as moving from lying to sitting.

Eventually there were some developments for Theo.  His overall health improved and he grew stronger.  His immune system improved so he did not need hospitalisation EVERY time he had a cold, but he may still have needed admitting to hospital if he developed a chest infection or, occasionally, episodes of aspiration as a baby.

Theo’s hearing improved.  At 19 months he had grommets fitted and at 21 months he had his hearing tested by evoked response at Birmingham Children’s Hospital.  On this occasion he as shown to have 30 decibel loss in both ears.  This means he would have only not been able to detect a whisper.  Theo responded best to music and learnt to recognise songs by the introductory few chords.  He would smile in recognition and nod his head from side to side.  If he did not like a song he would cry.  He loved ABBA but did not like the guitar riffs in songs such as Sultans of Swing.  It was almost as if it was too fast for him.

Immediately following the grommet operation we noticed that Theo was looking around more.  He had had his vision tested in the month before the grommet operation and then 3 months afterwards.  During this period his vision had doubled!  I think this was because he could hear better so would turn to look for where the sound was coming from.

Theo did not always understand what he saw because there was often a delay in his response to new - and sometimes familiar - items.  He could ignore me until I sang to him, even when I was holding him in my arms!  When he eventually got spectacles in July 2008 - when he was 6 years old - there was a marked change in his behaviour.  For the first time he could go past me and stop to look, clearly recognising me without the usual sing-song from Mummy!

Theo's mobility was his strength. This developed very well, thanks to all the help from the physiotherapist. Her support was invaluable in helping us to understand Theo's difficulties and providing the appropriate techniques for helping him to move from sitting to standing to crawling, and, at 4 years old, to walking. He even received a special trike, thanks to the generosity of the Stratford and Shipston Lions. Physical exercise required a lot of effort from Theo and he became very tired at times. Also his stability differed from day to day. He loved to be on the move so would not voluntarily sit down to rest or play. Watching TV, eating at the table or sitting with an adult to look at a book were the only times he sat down - and he needed to be sat down by an adult! Theo sometimes banged against something but did not show that it had hurt. However there were times when he fell on the carpet and he cried: almost as though the act of falling was frightening.

Theo’s communication skills were very underdeveloped.  For a long time I felt that his difficulties in understanding social behaviour were not simply explained by his learning and sensory difficulties.  He also had some “obsessive” behaviours, such as looking at lights and spinning objects.  Stripey fabrics were very exciting too!  I requested a referral to The Wolfson Centre (part of Great Ormond Street Clinic) as they specialised assessing children with developmental delay and a visual impairment. The paediatrician there confirmed that Theo had autism (ASD) in addition to his other difficulties.

Newbold on Stour, Stratford upon Avon, Warwickshire.