The story

The story behind The Living Rainbow Foundation

70% of people with special needs are either overweight or underweight.

I found out this fact when I started to research healthy eating with people who have special needs. Initially I was completely shocked, how could this be? With all our resources, care plans, advice, support and living in relative abundance in this country what was going wrong?

Why was I researching?

Ben in the kitchen

It all came about from the necessity to make sure that my son Ben, who has special needs, was receiving good nutrition after a new idea was put in place to offer the tenants in his house more choice. In November 2010 everyone where Ben lived would be responsible for their own shopping & cooking rather than eating as a family as they had been. The plan was implemented very quickly, immediately I noticed that the support workers were not equipped with either the time, resources or in some cases the necessary culinary knowledge to support this change. (At this point just imagine the worst case scenario of one support worker trying to cook six different meals with a one-hour window!) There was no further training or efficient practical restructuring to support the idea.

In the first weeks I became aware that Ben was now eating poor quality ready meals from a supermarket and heating them up in the microwave, as far as I knew this was also how the rest of the tenants were eating.

As I reacted as a mother to support my son I realised there was a huge gap in what was supposed to happen and the reality of day-to-day life.

I gained increasing awareness of the lack of a specific nutritional support system to support the support workers supporting the clients! There were many challenges, time restraints, lack of knowledge, storage problems, freezer space, etc. I started to research and found the ‘The Caroline Walker Trust’ who undertook a research project for the government, claiming 70% of people with special needs were either overweight or underweight and often did not have their nutritional needs met. As I spoke with people, carers, support workers and others who had relatives with special needs I began to realise the enormity of the problem.

My son Ben had lived in supported living for about 11 years. Previously at home he had experienced an abundance of good wholesome home-cooked food. Ben was not a big meat eater, more or less vegetarian, he was also keen to try new foods. When he left home to go into supported living and, even though we had made his choices clear to the home that he moved into, everything changed. I expected that, like any teenager leaving home there would be big changes but nevertheless the extent of his dietary changes were less than ideal. As he fell into their options he put on weight. I often drew attention to his diet as Ben’s weight could fluctuate by + 2-3 stone. On the whole though I thought that the advantages that he was getting in his new life outweighed the not so ideal diet.

However after the changes in November 2010 I knew this was the time to step into a more proactive support position.

Very quickly the new scheme broke down, mainly from pressure from parents & supporters. It was clearly unworkable. At this point the tenants in the house were asked if they would like to go back to the old way of eating together like a family. Out of the six, four opted to go back to the old way, my son Ben and one other wanted to continue to do their own shopping and cooking.

I could see this was going to be a tremendous learning opportunity. I felt that if Ben was supported in the right way, he would have greater choice, a good diet and he would take several steps forwards in his independence. From the previous few weeks experience I could see that it would be unrealistic for me to expect everything to turn around and for Ben to suddenly be on a nutrient dense well planned diet without my intervention.

What we did

I started to support Ben with a computer-based log of foods, recipes and pictures that Ben could relate to, make his choices and then have photographic evidence of his achievements. We planned, shopped and cooked for the whole day and froze down the mainly organic well-balanced meals that we had cooked together. Ben was then able to choose a meal and reheat it in a conventional oven each evening.

Ben had previously bought his own small fridge and this we stocked with fruits, dairy, salads, juices and a few choice puddings! Freezing the meals down I felt was the second best option that we could manage without me being there every day.

In the first three – four months and without focus on his weight Ben lost a good couple of stone, he was never weighed, however we needed to buy new jeans because his old ones were falling off him, he had lost about 6 inches around his waist! This was really interesting as he was still eating whatever he wanted to, the odd bar of chocolate, the odd biscuit, although I have to say I think there is a difference between some brands. It wasn’t as though there had been any restriction, actually there was more choice and variety. Personally through experience I know that the key to it was that we’d made his diet nutrient dense with many vegetables and fruits including approximately six portions of vegetables in each evening meal.

Progress

The system we were creating started to get noticed. Many people stepped forwards with encouragement, confirming what I was already suspecting that our work together would be beneficial on a larger scale. I was asked whether it would be possible to help some others in the same way. I readily agreed but soon realised that I would need to set up a proper structure to facilitate change on a larger scale, complete all the necessary legal requirements, insurance, CRB’s, etc. This also made me realise the programme had to fulfill certain criteria to make it accessible to everyone, these were:

    • Create something that was exceptionally easy to implement, without the need to have a computer.
    • Create maximum choice and empower the user in those choices
    • To make step changes which were easy and quick, no big changes
    • Create it in a way which bypassed the need for the support worker to have extensive culinary knowledge.
    • Support the support person to support their client confidently in the kitchen
    • Be an easy system that a new support worker would be able to meet client for the first time and be able to support them in preparing nutrient dense meals
    • Create a fun way of recording progress
    • Deliver the programme with enough support time to effect & sustain change

The results are the ‘MySmart Cards© – Supporting Healthy Eating Together’ entry programme. We then applied for and won a millennium award from *UnLtd this exciting opportunity has enabled us to set up the company structure, purchase equipment and get all our training packs produced.

My personal journey

Over the past ten months there have been many benefits for both Ben and myself, our relationship has grown, I have learnt so much from him, we have fun and enjoy each other’s company, exploring new menus and foods together. I have seen Ben’s engagement with the whole process flourish. His confidence has grown, his enjoyment in what he eats, his ‘grown-up-ness’ in making his own choices, his writing skills and the more subtle exchanges between us that I have been touched on many different levels, I feel a better person from our work together. My goal was to produce a system for Ben that he could use with anyone regardless if I was around or not. As a parent of a special needs adult there is always that worry that when you are not around who will take real care of your child.

Update November 2013

Ben stated he wanted to move and move he did! I’m thrilled to report in October this year  he moved to the Lantern Community at Ringwood. He is very happy and able to use his skills to the full and more.
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