Cameron’s Story

The world can be a frustrating place when you do not have the advantage of verbal communication. Add into the mix extreme sensory sensitivities, bowel related pain, bewilderment over curtailed pre-Covid activities, and you start to appreciate Cameron’s world.

In many ways, Cameron has the same interests and wishes as any other 23-year-old. He loves to hang out with people his own age, to chill listening to music or watching a film, to dance, to be physically active, to visit a restaurant, not to mention showing off to someone he finds cute. However, all of these present barriers. Cameron is autistic and non-verbal, requiring round-the-clock 1-to-1 care. He needs assistance dressing himself, with personal care, and almost every aspect of his life. It is impossible to know his thoughts and he cannot easily tell us when he is confused, in pain, hungry, thirsty, too hot, too cold, or simply wants to do something or avoid doing something. Additionally, intestinal issues mean a very restricted diet which for a number of years was limited to liquid protein drink.

Cameron has had health issues with his bowels since the age of 2 and subsequently required major surgery at 6 years old. He continued to spend at least 50% of his day in pain. After consultations with specialist gastroenterologists in 5 different hospitals, at the age of 15, a 100% elemental liquid diet was recommended as the best way to reduce his pain. The intake of the liquid diet needs to be spaced out at regular intervals throughout the day, as a replacement to solid food. This approach improved Cameron’s quality of life significantly, as his pain was reduced, but it was socially very restrictive.  

Cameron started at Henshaw’s in 2017, aged 19, and immediately the staff team readily provided and monitored the liquid diet. This included distracting him with walks out and about and other activities whilst the other young people ate together. It also included careful observation of his hunger and intake (taking into account he has no verbal communication) because too much or too little volume of his liquid diet could cause issues with pain or vomiting. 

At the start of 2022, under the advice of Cameron’s dietician, learning disability nurse and gastroenterologist at Harrogate District Hospital (as well as his gastroenterologist at St James’ hospital, Leeds) he started on a desensitisation diet. This includes the slow introduction of small quantities of foods every time he consumes his liquid diet. Gradually, over time, Cameron is now able to tolerate the feel of solid food in his gut and copes with the digestion of some less fibrous foods. Again, careful observation is required to ensure his intake matches his needs in the specific circumstances of the day and his tolerance levels, and his ability or otherwise to digest different foods without pain. 

Thanks to the perseverance and dedication of the staff at Henshaw’s, Cameron has reduced from 8 to 6 bottles of Vital 1.5k liquid diet a day and can sit around the dining table and enjoy a small meal with his peers, which, of course, he loves. The range of foods which he can tolerate is very slowly growing. This progress has opened up many opportunities for further social inclusion, for instance eating out at local cafes and restaurants which has increased his confidence, happiness and wellbeing. 

Henshaws has been transformational for Cameron. He always has a spring in his step when he arrives. Working in an environment adapted to his individual needs (such as recognising his “allergy” to sitting at a desk, and giving easy access to a trampette and a gym ball) means his capacity for learning and gaining in confidence is maximised. He is now much more at ease with the world, more able to know what to expect in a situation, and less startled by the way the world functions. Intensive interaction is utilised, with an emphasis on encouraging self-advocacy and giving him control over situations.

The facilities at Henshaws bring out the best in Cameron – he loves spending time in the sensory garden at the Arts and Crafts Centre and attending the live music sensory workshops, as well as making use of the quiet spaces available. He navigates himself around the sites and is well-known for exercising his freedom to pop in and out of others’ classes. He clearly loves the engagement he has with staff and peers and the respect, understanding, inclusivity and autonomy he receives. His development into a thoughtful, confident, more relaxed, fun-loving young adult would not have been possible without the support Henshaws has given.

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