Orson - PFD and Autism
Carly - Mum to Orson, shares the story of their journey with The Feeding Trust.
“In 2018, at the same time as we were given Orson’s ASD diagnosis, we were told he also had either paediatric feeding disorder, avoidant and restrictive feeding disorder or sensory issues around food. No further information was given and nobody seemed particularly concerned or forthcoming with help.
Over the next 3 years his eating became severely restricted to the point it was the main focus of our family life. If we went out we had to pack a whole rucksack of accepted foods, holidays were so difficult as every second was consumed with worries about Orson’s eating. It was difficult for anyone else to take care of him, even family as he would regularly refuse to eat or drink outside of the house.
During covid lockdown we even had to have a friend drive 30 miles to collect a specific lunchbox as Orson’s had broken so he hadn’t eaten or drunk anything whilst at school for over a week.
When we first saw the feeding trust for an assessment it was early 2023, Orson had only 4 accepted foods. He would only drink orange fruit shoots and needed encouragement and reminders to eat and drink. We would regularly put him to bed at night and hear his tummy rumbling but he would still not eat.
He started therapy with the feeding trust in October 2023. We knew this would be a long process and the whole family would need to be involved and on board. Having someone tell us it was not our fault, after questioning for so long whether we had weaned him properly, fed him properly or left it too late was massive. We learned about “food school” and how to do it at home and started doing it as part of our weekly routine.
Although he didn’t always eat the foods, seeing him progress through the steps and making progress in terms of exploring the foods and taking an interest gave us encouragement to continue. We always learned a-lot during our sessions with the feeding trust and made big changes to our own way of thinking about eating and food.
Orson really enjoyed being there too and would always surprise us on every visit by doing something or eating something new. Staff at the trust especially Anna and Charlotte really got to know him and would always have ideas on how to meet his sensory needs and overcome hurdles during the therapy, however bonkers it seemed! (Apparently balancing cheese on your head and using yogurt to draw is a good thing). It was amazing having their support and encouragement and joining us to celebrate the little wins along the way. It felt like the whole team was as pleased as we were when Orson celebrated his 9th birthday with cake for the first time!
We have had some struggles along the way, dropping chicken and fish, his only protein rich foods, but the team at the feeding trust gave us the skills and knowledge to gain them back and confirmed we were doing the right things. His bloods showed some mineral deficiencies, but the dietician, Lucy had a plethora of supplements that could be taken from sprays and drops to chewies, rather than the awful tasting liquids we’d been offered before.
After a few months Orson started becoming less interested in food school sessions, which is when we introduced family meals. This technique, combined with introducing foods through play as we did with food school, has become the norm for us now. Orson has the confidence and skills to continue thus whether it be at home, with family or at school.
After almost 18 months, lots of hard work, lots of learning and support from the team at the feeding trust, lots of frustration but also lots of excitement and progress, we are discharged. Discharged with a list of 30-40 accepted foods which include vegetables, meat, fruit, chocolate and of course CAKE!
Family days out now are less stressful as we can easily pack a lunchbox or stop for chips, there’s no panic if a brand changes design or a specific type of food is unavailable, holidays are almost relaxing as long as we have checked out supermarkets and cafes in the local area on google first and packed some orange squash to go in the widely available sports bottles he now drinks from!
Orson is now at a healthy weight and height and we all have the skills needed to know how to manage when Orson does have a bad day, or drops food, we are looking forward to watching Orson continue to progress and develop. It has honestly been an insane change for us but the most positive. Everyone that knows Orson has seen the change in him.”