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).
Although Theo had a wide range of difficulties he  became a happy smiley boy who gave pleasure to all who knew him - even if he ignored them!  He learnt to wave in the direction of people in response to being asked to say “Hello” or “Goodbye” and there were even occasions of him doing this spontaneously!

We used speech, pictures and Makaton signs to communicate with Theo.  He used smiles and an outstretched hand to communicate his preferences to us.  Just before he died he had begun to come up to me and make a specific sound.  I think this was his way of saying  “Hello Mummy”.

Despite his difficulties, Theo enjoyed life. He loved all the good things in life, food and drink and being with his favourite objects. This usually involved music, mouthing and spinning - and if he could do all at once it was a bonus! He also loved water and splashing. Bath times had become a bit of a nightmare so we took any opportunity for him to enjoy water in a (relatively) safe way, such as going to Broom private swimming pool for a warm swim, just the four of us. We also found a wonderful fountain at Cribbs Causeway on the way to Devon which really captured his imagination!

Theo loved being out in the garden. We made the decking area in our garden his large "play pen" with lots of sensory toys for him to bash! He had a passion for bushes and would batter them at the least opportunity. His particular favourite at home was a very fragrant choisya bush and he would come into the house reeking of it! This passion for bushes could also get him into trouble as when he fell through Grandma's beech hedge and laid there with only his feet sticking out of the bottom!

Theo enjoyed swings and liked to be in synchrony with other children swinging. He was not as happy swinging by himself and his expression changed radically when joined by another child. It loved it when Alexander joined him. We had a double swing at home with a TFH seat for Theo. In parks the "toddler" swings were mercifully big enough to take him although they were not as stable as the one at home!

Theo loved food and for a child who struggled to feed in his early life he made up for it later! He was not a fussy eater and would eat most foods. His particular favourite was yoghurt and any meal could be improved by finishing off with yoghurt. He loved Activia prune layered yoghurts and would beam when one appeared in front of him. His understanding of particular "food words" was excellent. He may not have understood "Mummy" or "Daddy" but he knew what "biscuit" and "yoghurt" meant! Much more tasty! He had an operation in February 2008 to control the constant drooling. This was a painful operation but a wonderful success. He was not longer constantly wet and did not need to wear muslin bandanas all the time. He could make an amazing mess when eating and so our consumption of kitchen role was phenomenal!

Theo was, and remains, a very important member of our family. His complex
learning disabilities were part of our family life.  Despite having autism, learning
difficulties, and CSNB, he was included in everything we did. If it meant one of us
did something with Alexander and the other did something with Theo, this was no
different to other families where there are siblings with very different interests
and needs. All our friends included Theo in parties and social gatherings. They
derived much pleasure from watching him grow and develop. It is comforting to know that so many people share very special memories of Theo. He was well
known wherever we went and was given extra biscuits in Marks and Spencer's
café every time he visited!

Despite our care and attention we lost Theo to aspiration.  We had put him to bed on the evening of 17th September a fit and healthy boy - he had been at school that day.  For some unknown reason he aspirated during the evening and we found him when we went to bed.  Despite the effects of the paramedics, and then the A & E team at Warwick Hospital, he was declared dead in the early hours of Thursday 18th September, the day before my birthday.  His sudden and unexpected death was a shock and completely unexpected.  Although Theo had complex learning disabilities, autism and CSNB, in themselves these are not potentially life-threatening conditions. The autopsy indicated that Theo had a congenital heart defect: an aberrant coronary artery. In typical Theo fashion he had a rare form of this condition. His single artery went through the septum rather than branching out around his heart. There were no symptoms during his life. We thought that this might have explained his death but sadly no. There was no evidence of damage to his heart at the point of death so we are no nearer knowing why he died other than he suffered aspiration. Theo liked to keep us all guessing: even after his death. Our beautiful boy did not suffer any pain. The only pain belongs to those who were left without him.

No tribute can do enough justice to Theo: he was uniquely beautiful. To say it was a privilege to have been his parents is wildly understating the facts. A child who could not speak, but who captured the hearts of all who knew him: what an achievement in 6 short years. The world is a sadder and emptier place without his smile and bodily presence. He lives on in many hearts and remains our beautiful boy.

Thank you for taking the time to read this website.   I hope this website is informative and useful to others. If you have any queries or comments you wish to share, please contact me on:

Newbold on Stour, Stratford upon Avon, Warwickshire.