Maintaining healthy eating when you have special needs and are going out

We’re into week 6 of my daughter’s changed diet. That’s 6 weeks of slightly altered eating patterns and food offerings. I’d like to say 6 weeks without fast food but of course, maintaining changes to your diet is never easy.

Especially when you’re a young adult with special needs, and with limited control over your circumstances.

As I wrote in ‘Arresting my daughter’s negative weight spiral’, the early results of putting my daughter on a diet have been encouraging. She’s not just been losing weight; she’s noticeably faster and more energetic. She can walk for longer without needing to stop. Most excitingly, she has been engaging more with those around her.

It’s easy to plan her food when she’s at home for breakfast and dinner, and when I make her lunches to take to her daily program. However, my daughter also goes on social outings. These are run by organisations specifically for special needs young adults to get out and about to places like Luna Park, the movies, bowling, local shopping centres – just doing things which others their age take for granted.

The challenge with this is the food.

Eating as social activity with your ‘community’

When you go out with friends or colleagues, eating is usually involved at some point along the way. And with young people, predictably enough, the food involved tends to be fast food. Which is completely incompatible with my daughter’s diet and health concerns.

Now, there’s a whole other dialogue to be had about nutrition, and looking after people who aren’t in a position to make food choices for themselves. The issue of nutrition in nursing homes, for example. But my focus right now is on teaching our special needs young adults to be independent, and make their own choices. That includes making better choices about food, through the places we choose to take them to eat.

Supporting or sabotaging?

I’ve spoken about my daughter’s diet to both organisations where she does social activities, and the sorts of foods she can eat. I’ve tried, with limited success, to find out the sorts of places they’d be eating out, so I could help her work out some meal options.

The night she was going to Luna Park, I asked one of the carers where they’d eat.
Probably the Golden Arches, he said.
I groaned.

It was looking like a small pack of chicken nuggets and a small fries. Yes, I know Maccas has salads, but really…? It would take a unique 19 y.o. to chow down on one of those salads while everyone around them was eating burgers and chips. Not to mention sundaes and thick shakes.

In a chatty way, I told him that several of us families had dietary issues we were managing for our children, and perhaps they could think about other places where our kids had healthier options.

His response? That sometimes they only had 15 minutes to order and eat, so they didn’t have a lot of choices.

Well. What do you say to that?

It wasn’t the place to say what I was really thinking, so I smiled and headed back to the car to let off steam. What a cop-out.

Firstly, you can’t tell me that if you’re out with a group of up to 20 young adults – who are independent to a point but still have special needs – that you only allow 15 minutes to order and eat. Come on!

And if you’re only allocating 15 minutes, you need to improve your planning pretty damn quickly because that’s ridiculous.

Secondly, what if my daughter were coeliac, like me? Your bog-standard fast food hamburger joint is not going to have gluten-free options. If they do, they’re unlikely to be appealing, least of all to a teen.

When I had raised the point with a different carer the previous week, she had suggested that maybe my daughter could bring her own dinner. Well, she could, but it’s not much fun taking out your lunch bag when everyone else is buying something fresh, fast or fried for dinner. Secondly, it deprives her of the opportunity to practise her independence skills by ordering her food and paying for it. Finally, it removes a significant part of the “social” from the eating part of the evening.

It was very frustrating. The carers at the program had all expressed their desire to be supportive, but more or less ended up sabotaging our efforts.

By the end of the week, I had calmed down a bit, only to be wound up again when I found out that fish and chips had been on the menu the following Friday night. This I had specifically, in writing, said was off the menu for my daughter.

Frustration, then some small progress

We didn’t want to deprive our lovely girl of the chance to go out, but she was starting to find it hard. She even began saying that maybe she should not be going out, as it was too hard to manage the food. Sure, that would have been the easy option – but not the appropriate option. Not for her, and not for the program.

I figure there’s at least a moral duty of care for such programs to support our young adults to make healthy choices. And there are plenty of healthy food court options these days too. You don’t need to go to a fancy café or restaurant to find tasty, nutritious food, even at good ol’ traditionalist Luna Park.

But clearly, the information I had already provided to her program wasn’t enough. And venting to the car’s dashboard and my husband wasn’t going to change things. I needed to get – and give – more information.

So, before the next Friday night activity – a burger night at a local burger restaurant – I wrote to the program’s manager and asked if they could tell me where they were going. I referred to the diet, and said that I’d have to keep my daughter home if a) they were going to an “off the menu” hamburger restaurant, or b) I couldn’t find out where they were going so we could plan ahead. Finally, after another email, I received an apologetic reply on Friday morning, with a link to the restaurant’s menu. That was very helpful, and I emailed back to say so.

Take outs

We all need to vent occasionally – otherwise we’d explode! But after a good vent, we need practical solutions. After all, my daughter’s many carers are there to support her, and I need to support them to do so. So, here’s what I’ve learned:

  • Be specific about needs and put it in writing. It’s clearly not enough to say “My daughter is on a low carb/whatever diet for health reasons and can’t eat take away food/chips etc.” It’s also not enough to say “my daughter can have a millkshake. Instead, I need to specify this is a shake with milk – not a thick shake made at a burger restaurant..
  • Be persistent about getting information. That includes asking about where she will eat when out on a social activity, and keeping on explaining why this is crucial for her social learning as well as her health.
    If I have the information, then I can help my daughter plan some food options which we can provide to the carers. If I don’t get information, that’s when I need to decide whether or not she goes out.
  • Emphasise that my daughter’s diet is part of managing her overall health. Sometimes it seems that people don’t really take someone’s need to be careful of their food intake as seriously as they ought unless it involves allergies. I know my sister, who has Type 1 diabetes, experiences this almost daily. This needs to change.

I’m sure there’ll be something else. There always is! But I think the key thing is to be proactive in thinking of solutions and strategies for my daughter’s carers.

That’s all for now. Stay healthy, and Happy Wombatting!