This week is Eating Disorders Awareness Week and we are bringing you a personal post from mum Deanne.

Her daughter Amber has additional needs as well as a complicated relationship with food and it is only now that Deanne and her family are finally getting the help they need. She shares her story and stresses the importance of not giving up when you feel like nobody is listening.

Finally, at the beginning of January this year, I sat in a room with professionals from the eating disorder service. You might ask why this felt like a good moment for me, but trust me, it was. I was thankful to be listened to, my concerns for my daughter Amber respected and acknowledged. Amber finally has a diagnosis of avoidant/restrictive food intake disorder or ARFID for short. Amber has a long and complicated medical history; premature birth, orthopaedic surgery, feeding difficulties, severe gastric reflux and a heart problem. Eating has always been an issue for Amber.

The start of our journey

We began to see dieticians, speech and language therapists and clinical psychologists. Special feeds to help with weight gain were prescribed, therapy ideas around play with food were suggested and at this point the focus was entirely on weight gain. This is where I feel the real issues started. Everyone’s advice was to let her eat what she wanted, but actually she didn’t want to eat. This went on for years. Sporadic, disorganised interventions with a series of well-meaning professionals.

By the time Amber went to school full-time, she had multiple complex needs, an EHCP, OTS, physios and teams of hospital consultants all focused on their own specialist areas, but no one apart from me appeared concerned by her eating habits. We had made some very slow progress over the years, but her diet was still extremely limited, her attitude to food and eating was negative and it was something we had to force her to do. There was no excitement or enjoyment around eating and Amber never had any favourite foods.

As Amber went to upper school now aged 11, her food intake was dry cereal, potato shapes, toast, the odd plain cheese sandwich, a small cheese and tomato pizza and a little bit of fruit on a good day. I was shocked by everyone’s attitude to it when I raised the question that surely this was not normal, it’s not normal to eat like that? What damage was this doing to her? Will there be long-term side effects on her development? I remember once almost shouting to a room full of professionals ‘she has enough problems without us adding to them!’ So many excuses were made about her eating issues. She’s just fussy, she’s doing it for attention, just ignore it and when she is hungry, she will eat…

I asked for help from so many people and by this time the feeding team had now discharged Amber as her weight had increased. No one realised this was probably down to the fact her mobility had decreased and she was spending more time in her wheelchair than her food intake increasing. I felt like I had failed totally. I constantly wondered what could be done to help her as it was now having a profound effect on daily life. She wouldn’t eat the same meals as us, we constantly had to think ‘what will Amber be able to eat’ and we had to take her ‘safe’ food with us wherever we went. No one else appeared to think this was a problem or could see the daily effect this was having on Amber.

Finding help and feeling hope

So here we are now and Amber and we as a family are finally receiving the specialised support we need. There is a long way to go to improve Amber’s eating habits, but I am feeling hopeful, so if you’re in a similar situation please don’t give up. Continue to seek support as it is out there. We have a had to fight a long battle to be listened to but I finally feel there is light at the end of the tunnel.  

Eating Disorders Awareness Week is running from 2nd – 8th March to raise awareness and help support people with an eating disorder, as well as their friends and family members. According to Beat, there are 1.25 million people in the UK living with an eating disorder right now and if your child already has additional needs, it can be a complex and confusing path to navigate and get the help you need but there are places you can go to for support. Follow the conversation on social media using the hashtags #EDAW, #EDAW2020 and #LetsBeatThis

Useful links

Beat
The eating disorder charity which began back in 1989 as the first national charity for people with an eating disorder.
www.beateatingdisorders.org.uk

Young Minds
Offers support for both young people and their parents.
https://youngminds.org.uk/find-help/feelings-and-symptoms/eating-problems/