Sausages

sausages_592633‘Why are you feeding him those disgusting sausages?  With a diet like that he’ll be missing out on a lot of vitamins, wow’.’

Wow indeed.  Such a loaded question, where do I start?  How about with my mood.

Good mood.  Rhino skin in place, tolerance in tact, smile and answer ‘They are his choice, he really likes them’.  Drift away, cursing under breath.

Bad mood.  ‘I am not ‘feeding him’ anything.  Thank goodness he has brought those sausages with him or we would not have been able to come to your house.  He won’t eat yours and they will make him vomit.  You can thank me later for protecting your carpet. Perhaps you’d like to take a tour through the history of his eating habits.  

He was weaned on every fruit, vegetable and pulse under the sun.  Everything was steamed, mashed, whizzed and consumed.  At the age of two and a half, shortly after his autism diagnosis, he started limiting his food.  It happens, it is real and it is not unique to him.  Something he had previously eaten would make him gag.  I started trying to disguise vegetables so they looked like the ones he would eat, chopping up green beans to make them look like peas, cutting sandwiches into shapes, using every act of encouragement I could.  He limited and limited and limited.  Eventually we got down to 6 foods.  Yogurt, bread, jam, tuna, weetabix and sausages.  Mealtimes were heavily ritualised, correct plates, bowls, cups.  It stayed like this for months.  He simply couldn’t look at some food without retching.  I was desperate, reading books and books on it, trying everything I could to entice him.  I mixed minuscule amounts of vitamin drops into his yogurt, all the while risking it changing the flavour and him giving up yogurt too.  The stakes are so high when your child eats next to nothing – losing a food from the list is catastrophic.  We got an allotment to help him touch, grow and hopefully try fruit and vegetables.  Every person in his life was instructed to casually offer him things, eat things in front of him while saying how delicious they were.  We took endless trips to the supermarket to sniff things and see what he might like to try.  I went on a course with a dietician who said, ‘Well there’s nothing much more you can do, but don’t worry, I have seen people who eat nothing but weetabix into adulthood. They are not very healthy but they have survived’.  I grimaced.  Perhaps she might have told us this before we got in the car and drove for an hour in the hope she could help us.  We poured over pictures of fruit and veg in books, read stories about them, all the time trying to disguise the fact that I was panic stricken and had run out of ideas.

For a while he needed the washing machine on in order to eat.  Then he needed to eat in a different room.  When he finally managed to eat at the dining room table he needed an i-pad to keep him occupied and distract him from the stress of eating.  Headphones help.  A lot.

Some people, who believed themselves to be experts, suggested that we leave him to starve.  That’ll do it, they said.  That’ll make him eat.  Wrong, you cruel, ignorant bastards.  All that would happen is that he would go without.  He would get tearful and hungry but nothing could make him eat something that he could not handle either by sight, smell, texture or taste.

Then one day he licked a segment of orange at a friend’s house.  It was like getting an electric shock.  There was a tiny opening, the smallest possibility that he would eat one.  We tried again at home, no dice.  We tried again at the friend’s house.  Nothing.  We put a slice on the table, near to but not on his plate and started from there.  Over the next few months he learned to tolerate it and not throw it.  He managed to sniff it and got a sticker every time he did.  In all, it took about two years until he took a lick and then a small bite.  After another few months he ate a whole piece.

This work carried on with a few target foods.  I printed off the major vitamins and minerals and targeted the foods that could help the most; blueberries, grapes, bananas.  He got a sticker in his ‘Big Food Adventure’ book for every attempt.  Thank goodness he drank milk. My sister-in-law managed to interest him in a raisin which was then backed up at school and he was away.  Pre-school got him into cocktail sausages (different shape – quite a triumph).  My sister got him to try a ricecake after a sustained but stealthy group eating session with her children.  Slowly, slowly over the following years we built up to around 20 foods.  Now, at the age of ten, he probably tries and tolerates one new food a year but sometimes giving up an old one in the process.  He has eaten the same lunch for 7 years.

I am one of the few parents whose ambition it is for their child to eat chips.  What people never understand is that when you have a child who cannot tolerate many foods, it is impossible to eat out as a family.  Wherever we go, we take his food with us.  Some restaurants are good about this, as we always explain, but some are less than welcoming. If he would eat chips, imagine the places we could go!  Imagine, just imagine, being out for the day and grabbing a casual lunch somewhere.  Actually being able to buy a sandwich from a shop.  Oh, the celebrations when he ate a hot dog sausage!  Crumbs from the roll dusted off, sausage sniffed and licked but consumed non-the-less.  ‘We can go to America!’ we cried.

The strangest breakthrough of all was with carrots.  We had been working on carrots for ages.  On a trip to Duxford Imperial War Museum he sat, munching on his packed lunch, in a cafe decorated with wartime posters.  Dr Carrot, the creepiest carrot in the world, was striding out with his medicine bag, dressed in a large collar, spats and a monocle. On his bag was written ‘Vit A’.  By chance, it was positioned next to a large poster declaring ‘Carrots keep you healthy and help you see in the blackout’.  He was entranced.  Night vision is a very useful thing if you wake up at 3 o’clock in the morning, every morning, and creep into your parents’ bed.  He expressed an interest.  It was a Sunday afternoon but we drove around until we found a garage shop that sold them and served them up as soon as we got home.  In one night he coped with them on his plate, sniffed them, licked them and took a tiny bite.  Two years work in one night.  By the end of the week he’d eaten a whole slice.  If only he’d been as interested in Potato Pete.

I have made the mistake of trying to get him to drink something, fruit juice on one occasion, by pressurising him and was vomited on for my pains.  Milk or water are all he will drink but I can live with that.  He can now use a knife and fork, despite not seeing the point.  He has just started taking liquid vitamins as he originally tried them as a medicine when ill.  I’ve set a daily alarm to remind him to take them.  The battle continues, by stealth, persuasion and encouragement.  I will never stop trying.

So, you irritating old windbag, you may well think that the sausages he is eating are disgusting (and thanks SO much for saying that in front of him).  You may well assume that I don’t care what he eats, that I am somehow blissfully ignorant of the deplorable state of his diet and that you are doing me a huge service in pointing out that he is not accessing the nutrients he needs for a healthy life.  Allow me to suggest that you don’t catch me on a grumpy day…

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15 thoughts on “Sausages

  1. Reblogged this on Cake By the Ocean and commented:
    Although my own children do not have autism, I work with children who have been diagnosed. With one of my clients, we have been working on a food tolerance program for a good year now. Some people will truly never know what it’s like, but it bugs me to my core when people make judgemental snarky comments!

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    1. Oh yes, I think the occasions on which I summon the energy to politely explain are becoming fewer and fewer. I might just have to print out copies of this post on my blog and hand them out to the windbags! Many thanks Crystal, best wishes to you.

      Liked by 1 person

  2. I love this. My own children, typically developing, went through stages of eating only PB and J sandwiches and goldfish crackers, but eventually that passed. I work with children who have been diagnosed with autism and one of my clients has been working on a food tolerance program for over a year now. He is about to turn 6. Although he is not my own child, I could see, as well as feel the frustrations of the family. I cannot stand when people run their mouth when have they NO IDEA whatsoever of what it’s like in your home. Congrats on the successes!!

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    1. Thank you Crystal! I wish you well in your work – it is so important and any one food that you manage to introduce will have a huge impact, no matter what it is. Keep going!

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  3. I’ve never been the kind to judge anyone on anything (much less to express anything that sounds like judgment aloud), because it’s always been my experience that people always have reasons for what they do. I’m glad I have that policy; it keeps me from saying something ignorant or insensitive like the woman in your opening statement.

    What a loving, devoted, resourceful parent you are. The time and energy and research and effort that has gone into your quest to find foods that your son can eat are so admirable. This post was enlightening to me, as I haven’t had much experience with autism and was unaware that this could be an issue. I wish you continued success! 🙂

    All the best,
    Laura

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