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 …

Autism : A colourful history

This morning, I found a handful of photographs of our Ian from many years ago.  I was looking for something completely different, of course.  That is the way of my life.  The minute I actively start looking for something, the gremlins hide it from me and I will only find it at some different time, when I’m in another active search for something else that I won’t find, and so it goes on …

 

I also, quite by accident, came upon a diary entry concerning Ian, which I immediately wanted to share with you.  It dates from January 2002 –

 

“Within the space of a month I have taught Ian to phrase his questions in a different way.  For the past year he’s been saying “I want [whatever], please [whoever].”   A little patience, a little insistence, and now he asks “Please may I have some [whatever], Mummy”.  I’m so chuffed.

“Just occasionally I catch a glimpse of something which makes me hugely optimistic.  A greeting in a ‘normal’ voice, with inflection and tone.  A word on the computer which I didn’t know he knew – like the time he made a square, put a W into it, and underneath wrote Woolworths, perfectly.  The complete logo, immaculately set out.  Or when he said his prayers with us, and then said them again, on his own.

“Only this morning he was sitting in my lap, making faces at himself in a hand mirror.  When he hit upon a particularly  good one – pursed lips, squished-up eyes, squiffy eyebrows – he held the expression and turned to me, looking straight into my eyes as if to say “What do you think of THIS one?!”  I laughed and laughed.   His sense of humour is delightful.”

 

–o 0 o–

 

But moving on to the photographs …

 

When I was first pregnant with Ian – so early in the pregnancy I didn’t even know I was pregnant yet – I suffered a ruptured ovarian cyst and severe internal bleeding.  A reaction to the anaesthetic and extreme blood loss meant I went into shock on the operating table.   I survived, thanks to a superb medical team.  That the pregnancy survived at all was extraordinary.

I had a scan at 7 weeks, and saw the beating heart of my little blob, my miracle-child.  I even kept the scan photo – dated 19 April 1995.

IMG_5405

 

When Ian was tiny, and obviously before he could roll over, I used to keep him in the kitchen with me while I cooked.  He would sleep on the countertop, fast asleep while I bustled about doing my ‘thing’, and then I’d scoop him up and take him with me when I left the kitchen.  For a few months, he was my ‘kitchen buddy’.  Then he learned to roll, and I had to make other plans.

 

IMG_5406

 

Strong enough to climb, small enough not to do any damage … Ian loved climbing all over my car.  He got up there himself, and basically made free with it;  his personal obstacle course / jungle gym.

 

Before we left South Africa for Ireland, we had professional photographs taken of us as a family.  Ian is so pale, he looks ill compared to his robust tanned family …

 

IMG_5409

 

If the hat fits …..

IMG_5410

 

In those days, Ian wore a MedicAlert bracelet which pronounced his autism.  No one ever looked at it, even when he got away from me in the village and was apprehended by strangers.  In the end, I took it off.  There didn’t seem to be any point.

Ian’s rocking horse was an endless source of fun for him, situated as it was in our wonderful open field.

 

He rocked.  And of course he climbed.

 

And when he’d finished playing, he would curl up in the swing seat, and fall asleep …

 

IMG_5414

 

And to finish off, another diary entry concerning Ian, this time trying to arrange for him to attend school :

 

“Apart from making it abundantly clear that I would not be allowed to participate in Ian’s schooling at all, it was also pretty clear that as the parent of an autistic child, I should be almost pathetically grateful that they’ve made the effort to “meet the parents’ needs” and set up the autism unit.  And what a bloody palava it is to get him enrolled!  He has to be assessed by a psychologist;  that report is then reviewed by the Board of Management of the school;  the Schools Inspector is then required to sanction the application; and he in turn submits it to the Department of Education & Science.”

 

Good grief!  I’d forgotten all that.

 

And to end, a verse I found at the back of the diary.  I laughed, wondering if all the parents of autistic children are strange.  Perhaps we just make our own entertainment where we can find it.  Whichever, make of it what you will ….

 

Wolf

Each morning her face stares at me,

A picture of equanimity.

She calms me down, stills my world;

Before her lay my secrets, unfurled.

Her golden eyes have seen it all

Her calm gaze holds me enthralled.

I wish, how I wish I could be like her –

Calm, long, lean, and wrapped in fur!

 

Autism: to pee or not to pee ….

Oh boy. There’s always something …

Ian spends his days at a fabulous place, with wonderful people, who always and only have his best interests at heart, and who go out of their way to keep him entertained and happy.

But when Ian wouldn’t use the bathroom there, they were concerned. He would have a wee at home before he left, and would go as soon as he got home, but for the whole day at the center, he would hold his urine.

This worried them. And I’m sure, rightly so. His bladder and kidneys are being well exercised, but I doubt it can last forever.

Admittedly, there’s family form here …. My mother once called me ‘a camel’ because I didn’t need to go to the bathroom as often as she thought I should. But Ian’s lack of bathroom visits had become an issue, and I would have to come up with a plan to deal with it.

Problem number 1:

Ian wouldn’t even go into the boys’ bathroom at the center. Wouldn’t cross the threshold. Now, I’m not going to cast aspersions and ask “What the hell happened in there to make him so resistant?”; I try not to make those kinds of waves. I just applied some common sense: will he go into the girls’ bathroom instead?

Yes, he would. Problem number 1 solved.

Problem number 2:

As soon as Ian knew why he was being guided there, he would put on the brakes and refuse to cooperate. Mum was called. Could I put in an appearance and help them?

Of course. I’ll drive half an hour to supervise my child using the bathroom – five minutes – and drive half an hour home again. For my son.

Not for your peace of mind; for him.

Problem number 3:

Ian responds differently to different people. He will do some things for one person, but won’t do them for others. Which is a big problem when he has a different supervisor week by week, and I’m the only one who can see the issue…

Problem number 3 has not yet been resolved.

Everything seemed to be going ok. My presence was enough to ensure that Ian did what staff required him to do.

I would hide in a room, listen to his supervisor try to persuade him into the bathroom, and appear – magically – when he put up too much of a fight. “Do as you’re asked, Ian.” I’d say. “Please listen to staff.”

The joke was that Ian began to seek me out! The staff suggested Ian might look to me for ‘reassurance’. They’re so kind.

I strongly suspected he looked for me to see if he really had to do as he was told.

Either way, I was rumbled.

But some tenuous progress was being made.

Until last week Tuesday.

Hiding in the art room at the center, I could hear the staff member trying to persuade Ian to go with her – “Come with me please, Ian. Thank you. Come with me please, Ian. Thank you. Come with me please, Ian. Thank you.” – and my head was starting to buzz. My mummy-brain was doing it my way : “Ian, bathroom. Now.”

I was called to assist. Ian was being difficult.

Actually, Ian was in full bullish resistance, with his heels dug into the carpet, and a set expression on his face.

I managed to manoeuvre him into the bathroom, but would he go into the stall? Not a bit of it!

But I was there with his carer, and all I wanted was for him to do as I ask.

He got a bit physical, pushed me back against the stall door.

And here, writ large, was the difference in approach.

His carer gasped and said “Fiona, be careful!”

She was afraid.

Me?

No.

My ire was roused. I could feel the energy, like white light rising from the depths of me. I got in his face.

You are not the boss of me! I am the boss of you!

Well, my parenting style is my own, and it has served well enough thus far, and sure, Ian has rights, but I’m not sure the right to NOT pee is actually included in there, and besides, no matter your age, special needs or not, you should listen to your mum.

I asked his supervisor to leave, and after a few awkward moments, he did as I asked, and sat on the toilet. He didn’t wee, but for us the battle was over.

There was a brief hug … a sigh … and a long journey home.

Of course, we’re now back to square one, and the entire bathroom acceptance process has to begin again.

There will be a meeting, and decisions will be made. And I shall have to take the bull by the horns and speak up, which will mean possibly hurting someone’s feelings; at the very least, denting their self esteem; and specifying that only one favoured member of staff be involved in the bathroom business.

Because Problem number 3 definitely has to be addressed.

He will for some; he won’t for others.

Autism : A Christmas Miracle

Ian’s diet has always been limited.

We joked about it: Ian would only ever eat brown (meat), yellow (potato) or white (bread) foods.

The drier, the better.

Mushy was just nasty.

Trying to tempt him with something different from his usual diet was invariably met with a hand pushing the offered food away, and a “No-no-no, please, Mummy”.

Over the years, he has displayed almost no desire to try new things.

But today, Christmas Day 2018, Ian tried soup.

Not only tried it, but cleaned a bowl of it.

As we watched in astonishment, spoonful after spoonful of warm Vichyssoise found its way into his mouth.

Truly, our Christmas miracle.

And yes, it was white soup, but still ……

SOUP!

Autism: A Thank You Note

I want to thank all of you who sent me messages of love and support after my last blog. I really appreciated each and every one of them.

However, I think it is important for me to say that the blogs I write are simply ‘a moment in time’. I didn’t even expect this one to be so dark, it just happened that way – and perhaps it was meant to.

I do need to vent.

I do need to be heard.

But I don’t want you all thinking that it is always like that, because that wouldn’t be true.

Ian is a challenge. There is no getting away from that. However, I have never felt the need to ‘take a break’ from him. Not at all. For all the strange behaviours and irritating t-shirt- and underpant-ripping habits, he’s still a good kid.

Maybe I am more resilient than some, but you know what? You’d be surprised yourself at what you could do if my life were yours.

He’s my son, and for all his strangeness, I adore him.

Tonight, when I went into his room to point him in the direction of his bath, he spontaneously gave me a great big hug. And then he giggled, which made me giggle too. And for that small, perfect moment, all was right with my world.

So thank you, again, for your continued support.

We’re ok.

❤️

Autism: The future is ok.

It’s really been a roller coaster ride.  

For a span of years, everything was so good. Ian was the perfect child – happy, communicative, involved, connected, bright, and loving. 

The trouble is, this lasted long enough for it to seem permanent, and it has been anything but. 

This morning I find myself wondering why I haven’t written a blog in a while.  Is it because everything is ok? Or is it because it isn’t, and I don’t want to write about that?

It isn’t ok, of course, because my son is profoundly autistic.  

He ‘is autistic’, or he ‘has autism’?  I’ve lost track of which is the p.c. way of saying it.  

Whichever. Whether he is it or has it, it’s profound.  

It’s not one of those ‘has issues communicating’ or ‘might struggle with his schoolwork’ or ‘may be slow to make friends’ kind of autisms.  

This kind is far, far beyond that. 

To a place where the world and my son journey alongside each other on a strange parallel path, where neither connects with, reaches, or in any way marks the other. 

And because of that, I suppose I feel affected by it all over again, when I meet it head-on, every day.

When I walk into Ian’s bedroom, and he doesn’t acknowledge me. 

Or he’s just being odd, and it’s getting so hard to bring him back from that faraway place he loves to be.

Every day is different, and each day brings its own challenges. 

When he destroys a brand new jumper.

Or yet another pair of underpants, leaving himself with a waistband and hanging tatters of fabric which don’t cover anything at all, and which would be terribly funny, if it weren’t the fourth pair that week, and all I can feel is tired.

Or when he nags endlessly for the holiday we can no longer take because the premises have been sold and aren’t available any more as holiday apartments, and I feel so sad for him that no matter what I say, I cannot make him understand that we will never go there again.

Or when he dirties himself for the third time that day, and needs to be cared for with grace and kindness, and somehow with his own dignity intact. 

Some days are tough.

And some days Ian keeps to himself, and seems happy. 

Not the happiness of the bygone days when he was brighter than usual, or answered a question straight away, or worked out a problem for himself and grinned from ear to ear when he knew he’d got it right.

Not that kind of happy.  Not any more.

Just … quietly content.

And that’s enough, right?  

Isn’t it?

Autism: An alien in the house

Oh, my heart.

Ian is further away than he ever was.  Now, it’s like sharing the house with an alien.  No, really, an alien, like in the sci-fi movies.  Weird, and strangely non-human.

I feel like I don’t know him any more.  It’s like living with a stranger.

I miss my son.

Some days it’s really hard.  Normally, a strong sense of humour is enough to carry you through.  There’s plenty of weird to find funny.

But sometimes it’s just you and the stark reality, and you look at this strange, posturing, closed-off creature, and it crashes into your head before you can stop it :  Who IS that???

And you swallow hard and go through the motions, but the complete absence of any vestige of that treasured relationship that you once had, that bites deep …

Breathe, woman.

Breathe.

You can do this.

I had asked Ian to pick up the soap.  It was bath time.  Simple thing.  Every day, the same.  Ian, pick up the soap.  And he went dark.  Lights out.  Postured.  Made his hands into claws.  Tilted his head and held it, with a weird look on his face and a far away stare in his eyes.  All angles and strangeness.

It was like he was daring me  —  to what???

I stood by the bath and watched, horrified.

Dear God, the urge to shake him out of it was so strong!  I clenched my hands by my sides and forced myself to wait it out.

I couldn’t look at him.

Breathe, girl  …  it will pass.

He was an alien from War of the Worlds.  All angles and weirdness.

And he is my son.

 

IMG_3665