Theo Lucas Kingsley Monk:
	Our beautiful boy

Theo was born on his father's birthday in June 2002. Theo was full-term and the pregnancy was uneventful - apart from low "liquor" discovered at 37 weeks. He was subsequently born naturally at 38 weeks. Theo's Apgar scores were normal and we were discharged from Warwick hospital when he was 6 hours old. Theo struggled to feed and in his first week lost 1lb. This was more than 10% of his birth weight of 6lbs 11 oz, so he was monitored from the start. I was very concerned about his difficulties in feeding and at 19 days old he was admitted to Warwick Hospital on the basis of "failure to thrive". Various tests were carried out and proved inconclusive. He was discharged after a couple of days. However he was back in hospital at 5 weeks as the result of a serious apnoea attack. The circumstance of the apnoea attack led the paediatrician's to conclude that it had occurred as the result of a reaction to acid reflux. He was given the treatment of Ranitidine and Gaviscon for the reflux. Theo was in hospital for a week and further tests were carried, including a heart echo at Birmingham Children's Hospital. These tests were also inconclusive as to any reason for his feeding difficulties. At 7 weeks Theo had a bilateral inguinal hernia repair at John Radcliffe Hospital. This was not related to any other problem, just an unlucky coincidence! I continued to attend Warwick Hospital with Theo throughout the summer and he was referred to the paediatric dietician and at two months old Theo was given high-calorie milk to assist his weight gain. By this time his weight was below the minimum weight on the growth chart (i.e. off the chart), meaning his weight was well below the first percentile for most of his first year, even with the high calorie milk. He was also seen by the specialist speech therapist who gave invaluable advice re feeding techniques etc. Theo's development was obviously different from the start. He cried for long periods, and was clearly distressed at times. He did not smile until he was 13 weeks, as opposed to the usual 6-10 weeks. As I was so concerned about his development I contacted a friend who is a Portage supervisor in Birmingham. She came to see Theo and subsequently sent him some toys, such as an "astronaut's blanket", to stimulate his interest. I also contacted my boss, the then Principal Educational Psychologist for Warwickshire, Joy Wellan. By 3 months old he had been seen by Joy who used Griffiths developmental profile. Theo did not respond to many items, and it was clear that there was a particular problem with eye-hand co-ordination. I spoke with the doctors about his hearing and vision. At the same time Theo was also referred to the physiotherapist as it was evident he was still quite floppy (he had primitive reflexes and little head control at 3 months). In September 2002 Theo had 3 hearing tests at Warwick Hospital. I was asked to return this number of times as the audiologist wanted to check the results. She subsequently referred Theo to the Consultant ENT Surgeon. It was not until February 2003 when we saw Mr Cable that we were told that Theo had no hearing in his left ear and there was a loss of 50 decibels in his right ear. Although there was nothing they could do for his left ear (described as a "dead ear"), they wanted to review Theo regularly as he had chronic ear infections, in particular in his right ear. They therefore wished to preserve his hearing in this ear. In September 2002 Theo was seen by the orthoptist at Stratford Hospital. He did not respond to light shone into his eyes nor track a light moved from side to side. Neither did he have a blink reflex. In view of his lack of responses, the orthoptist referred Theo to the Consultant Ophthalmologist. I also contacted the VI teaching service and a specialist VI teacher came to see Theo at home at 4 months old. She commented that Theo had little or no pupil dilation. He also had nystagmus (eye wobble) and each eye moved differently from each other, creating a strange effect. Theo was eventually referred to the Consultant Ophthalmologist at Birmingham Children's Hospital. In December 2002 he was given a diagnosis of Congenital Stationary Night Blindness (CSNB). This affects night (low light) vision and peripheral vision. Other features are poor vision (myopia through to registered blindness) and nystagmus. In October 2002, Theo was seen by the physiotherapist. She gave us advice on handling Theo and provided all important equipment, such as a Tumble Form chair which gave Theo support allowing him - and me - the freedom to look around him without having to be constantly handled. She also gave us an insight into the extent of Theo's physical difficulties. She described Theo as "floppy and stiff": that is, some of his moments were rigid but he also did not have sufficient control of, nor support for, his limbs and trunk. In February 2003 we saw the Consultant Geneticist. During his many hospital visits since birth there had been several blood tests undertaken but no diagnosis of any genetic reason for his difficulties had been detected. Congenital Stationary Night Blindness is a discrete visual impairment and does not explain Theo's developmental delay. Theo had a type of CSNB which is attributed to a recessive gene. It is possible that Theo inherited CSNB from us through a recessive gene defect, and also suffered developmental delay by coincidence. The Consultant Geneticist suggested an alternative theory that Theo had a contiguous gene defect: that is, two neighbouring genes had been affected by spontaneous damage, one causing the developmental delay and one leading to the CSNB. This meant that Theo had not inherited his difficulties from us: he was just unlucky! Everyone carries faulty genes but in Theo's case, his faulty genes had more impact than most. 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. His development did not followed a "normal" pattern as he was able to do some things, such as sit unsupported, before being able to roll over. It also took him longer to be "secure" with skills such as sitting. For example, he first sat unaided for a few seconds at 1 year. It took several months for him to sit reliably without needing support "just in case" he fell back. Eventually there were some developments for Theo. His overall health improved. His immune system seems to deal with colds better, so he was less likely to be hospitalised for chest infections and resultant breathing problems, as he did for the first two years of his life. There was still at least one hospital admission a year, though. In October 2005 he had a febrile fit which led to breathing problems and he was hospitalised. Prior to this the staff at his special school nursery had commented that he had been having what appeared to be "absences". The paediatrician therefore arranged for Theo to have an EEG test. The result of this test was - yet again - normal. Theo's hearing developed. At 19 months he had grommets fitted and at 21 months his hearing was retested through the evoked response at Birmingham Children's Hospital. On this occasion he was shown to have a 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 could discriminate between music he knows and that which is unfamiliar. He had favourite songs and singing was always been a good way of calming him down when he was distressed - or bored. There was constant music played in the car, even on short journeys. On one shopping expedition, we called into the HMV shop. The soundtrack of Mamma Mia started, with "Dancing Queen". The smile that spread across his face when the familiar piano scale started, was a joy to see! Immediately following the grommet operation we noticed that he was also looking around more. Theo had his vision tested in the month before his grommet operation and then 3 months after the operation. During this period his vision had doubled. In July 2008 his vision was tested again by the Consultant Paediatric Ophthalmologist and he was prescribed spectacles for his short-sightedness. He received his spectacles in August and we immediately saw a difference in his behaviour. For the first time Theo would walk past me and do a double take. He was able to recognise me from a short distance without me speaking to him. From an early age he had learnt to recognise me by my voice (as he did other family members). Being greeted by Theo in such a way was a revelation for both of us! Theo still needed to have things placed in a vertical plane for optimum recognition but he was beginning to look down at objects and was even starting to bend down to pick up toys! He had also learnt to watch TV (we bought a larger screen for him). He loved to watch a host of DVDs and TV programmes, such as Something Special , Fifi and the Flowertots, and The Simpson's with Alexander. His bedtime routine involved watching the Bedtime CBEEBIES. The "Goodnight Song" was the sign that he was going upstairs to bed! 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. He did not look readily at people and, until he received his spectacles, I often needed to sing to him to get him to look at me. For a long time I felt that Theo's difficulties in understanding social behaviour (such as "hello" and "goodbye") were not simply explained by his learning and sensory difficulties. He also had some "obsessive" behaviours, such as looking at lights and spinning round objects. I therefore requested a referral to The Wolfson Centre (part of Great Ormond Street Hospital for Children). The paediatrician there confirmed that Theo had autism in addition to his other difficulties. Latterly Theo did develop an understanding of "hello" and "goodbye" in the sense that when asked "Theo say 'Hello'/ 'Goodbye'" he would wave to the person. He had even started to wave spontaneously in greeting to some people! The combination of ASD and a visual impairment was not good for his communication skills! However, Theo was a happy smiley boy who gave pleasure to all who knew him - even when he ignored them!. We used speech, cards, Makaton signs to communicate with Theo. He used smiles and an outstretched hand to communicate his preferences to us. Latterly, though, he had begun to use specific sounds for certain people. When he saw me (and particularly since he got his spectacles) he would come up to me and make a long noise, leaning his head back as he did so. He did not do this to anyone else and I believe that this was his way of saying "Hello Mummy" as he did it once and moved on. It was not a repetitive behaviour as some of his sounds or action could be, but very specific - and to me! 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! Theo died at Warwick Hospital on 18 th September 2008: the day before my birthday. It is a tragic irony that he lived and died around his parents' birthdays. His sudden 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 Theo 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. 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: anna@theo-monk.co.uk Thank you for taking the time to read this website. Newbold on Stour, Stratford upon Avon, Warwickshire.