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 …

5 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.

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  2. May we back up a minute? I have no idea what jurisdiction you live in, but at 23 most adults are considered to be in charge of their own lives. I am not trying to be adversarial, I just happen to know the law. Unless you are his legal guardian, officially, not just by birth, you have no legal say in most jurisdictions of what your adult child can or cannot do. Independence is automatic at some point, unless you have gone to court. Ian’s caregivers must take his desires into account over anyone else’s. This is the law. They do not want to fight with you, but they must fight for your son. Everyone understands you want to take care of him, to not do him any harm, but Ian has the right to harm himself if he so chooses.
    Please, do not fight over what your son can and cannot do. Please, find a way to work with the agency, with his caregivers. Being a caregiver is an important job, though few are paid what they are worth. Good caregivers are not easy to find, but it is easy to destroy them.
    Please, let them do their jobs. Work together.

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    • I know you are right, of course. And I do not fight with my son’s caregivers. I appreciate them.
      I do, however, find some aspects of his care frustrating, and my blog is simply a place for me to let off steam.
      Being the parent of a person so profoundly vulnerable is very hard work, but all of us who are looking out for him here in Ireland do, somehow, manage, all together.
      Thank you for your comment.

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      • Parents of people with autism are caught in the middle, I know. So are the caregivers who work with them. Everyone wants to do the right thing, but not having autism ourdelves, we struggle to know what the right thing is.
        One thing I learned in the years I worked in the field, it is far too easy to try to protect them too much.
        They are people first, the autism is just something they have. We, the people around them, have to learn to let them make mistakes. That is how we progress as people, and that is how they can progress as people. They might not learn as easily as some of us do, but they can learn. We need to have more patience, and more trust. It is up to us to help them live less dangerously, but it is also up to us to see that they can learn to cope in a mean world.
        I’m sorry if I sound like I am preaching, but most parents want to protect their children from being hurt, which brings up two issues. They grow up, they are not children forever. And they need experiences like everyone else. It is more important to let them fail than to never let them try things on their own. We are all persons, having autism does not change that.

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