Autism: Who’s in charge here?

Well, here’s a new one.

We had a review meeting lined up at Ian’s day placement.

I had a list, which is never a good sign. I only make a list when I definitely need to remember something, and the items on this list were particularly important.

But I try to be open, and am always optimistic, and I went into the meeting with a happy heart and a smile on my face.

Things were going well. That is, until we were asked if we had anything to add.

Cue list ……..

One of the most important items on my list was about Ian’s increasing weight. I raised this issue, citing the number of times Ian is going out to lunch during the week, as well as cooking his own lunch in the center.

It was obvious (to us) that he was eating too much.

At the meeting, I stressed – again – that our main meal of the day is in the evening, when we sit as a family at the table and share a meal. If Ian has eaten too much during the day, he doesn’t really want to participate, but he will eat because that’s his habit. Eat, whether he needs it or not.

So what constitutes ‘too much’?

Well, I pointed out that Ian is eating hamburgers, pizza, and hotdogs at the center, and getting toast when he goes out to the cafe. Bread, bread, and more bread.

A smorgasbord of starch and carbs.

And here’s the rub: Ian has no ‘off switch’. He doesn’t understand full the way his brother does. Ian will eat what’s put in front of him, regardless of the amount. If it’s food he likes, he will eat it all. And he loves bread.

I pointed out that Ian also has a markedly tilted pelvis. This already puts strain on his lower back and hips. (I was once told by a Physiotherapist that Ian would in all likelihood have chronic hip problems by the age of 22. Her ‘22’ was strangely specific, which is why I remember it. Ian is now 23 and shows no signs of distress, but we’ve been careful, and his weight had remained constant for years.) However, if Ian developed a paunch – as he was in danger of doing – carrying more weight than necessary in front of him, it would put an impossible strain on his spine and hips. There is a genuine and very real health issue.

Please, we begged them, please limit the amount of food which is put in front of Ian. And if you’re assisting him to make his own lunch, just cook less. This is not rocket science.

There were worried frowns on the other side of the table.

Limit his food?

Oh, no, we couldn’t do that. We couldn’t deprive him … We couldn’t stop him from having something he wants to eat … We’ll have to speak to the Human Rights Committee …

I think I might actually have gasped.

Human Rights Committee?

Because we are asking you not to let a person who doesn’t have capacity and who doesn’t know when to stop stuff himself unnecessarily full of food every single day?

Hang on a minute. We are his parents, his primary carers and we are saying enough is enough.

Human Rights Committee?

Where is OUR voice in all this? OUR right to care for our child – adult though he may be?

Yes, I did ask that out loud. And not before time.

But it didn’t change anything.

When the meeting was over, I was left feeling a little bent out of shape.

Yet again, our thoughts, views and opinions carry no weight. Parents, with no value. Our desires, our wishes, are swatted away like an annoying fly.

But I am not a fly.

And I am persistent.

You have not seen the end of this …

2 thoughts on “Autism: Who’s in charge here?

  1. Good for you, Fiona. Put your foot down. It is Ian’s human right not to have carry around extra weight which can cause all sorts of health problems which are avoidable. Human right to stuff oneself with junk food all day? I think not. You are being the most wonderful parent any son could ask for. Keep up the good work.

    Like

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