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.

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!

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.

❤️

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?

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.

Today I came across some notes I had written a couple of years ago, when Ian was due to spend two weeks with some people who didn’t know him.  Perhaps this would be a suitable adult centre for him to attend;  perhaps not.  How could I possibly sum up our complicated young adult in a way that would make sense?

I had no choice but to limit my notes to the few things I considered most important.  It was, after all, only a two week stint.

When I read them today, I laughed.  How terse I sound!  How anxious to impress upon them the rules we had instilled so many years ago!  And how impossible it was to encapsulate all that is Ian in less than two pages!

But I felt it was worth sharing.  It entertained me;  perhaps it will entertain you.  This is what I wrote —

“Please speak slowly and clearly to Ian.  If you speak too quickly, he will just switch off and not listen.  There is no excuse for him not listening, so please measure how you are speaking against how he is answering you.  If he’s ignoring you, try again.

If Ian repeats ANY activity or phrase more than three times, please tell him “Thank you.  That’s enough.”  For flapping his hands, picking his nose, rubbing his face, scratching his crotch, say “Hands down.” Repeat as often as is necessary.  Please do not ignore this behaviour.

Anything can be deferred with the words “Let’s do this first;  you can do that afterwards.”

Please put a cloth over Ian’s shoulder when Ian is eating – he wipes his hands on his shoulders and makes a terrible mess.  He knows and will use a cloth.  (One will be sent in with him.)

Please work on the assumption that everything Ian says has meaning in that moment, and that he understands everything.

Please do not let Ian get away with just reaching or pointing for something he wants.  He has the words!

Ian drinks a lot of water during the day.  He also uses this as a distractor, so look out for this.  As he only goes to the toilet in the morning and at night, he cannot drink all day.  Please limit him to half a cup – or less – at a time.  He uses a straw (provided).

Ian has impeccable manners.  He will say please, thank you, and excuse me (if he burps).  Please don’t give him anything without waiting for him to ask nicely or say thank you for it.

Ian MUST be given time to answer a question.

If Ian rubs his forehead and says “Oo-oo-oo”, please say “It’s okay, mummy kissed it better”.  Weird, but it works.

Ian LOVES a calculator and will bring one with him, from home.  He knows the alphabet in numbers – i.e. A=1, B=2, C=3 etc, and will type numbers into his calculator which actually spell words.  If he types in numbers, ask him “What word is that?” and he should tell you.  He can delete it really quickly, so opportunities get missed.

Ian has a delightful sense of humour.  I hope you get to see him smile, it’s a thing of beauty.  But please don’t ask him to smile – then he pulls the most awful face!”

o 0 o

Ian didn’t stay there longer than his allotted two weeks, which was sad in a way because he loved it.  There was a swing seat in the garden, and they allowed him to play on the computer as long as he wanted.  Two of Ian’s favourite things, right there!  He was popular with the staff because he was verbal – and polite – and popular with the service users because he could ‘do stuff’.  In fact, they watched Ian constantly, almost in awe.  He was like a special needs deity walking among them!  Unfortunately, it was his abilities that set him too far removed from the others, and the centre was deemed not for him.

He is happy where he is now, but he has never forgotten this other place, this little heaven with endless computer time, and a swing seat in the garden …..

This is Ian’s grey hoodie –

However, if you look closely, you see things are not quite as they should be —

In fact, they are entirely NOT as they should be —

The entire top has been deconstructed, thread by thread – including the zip!

Quietly, in his room, Ian’s fiddle fingers got busy and now I’m left with a pile of pieces I have no intention of sewing back together.  Why should I, when he will only pull it apart again?

Not much gets me down, but this ….

this does.

I feel tired, defeated.

And distinctly annoyed.

Autism…

“From the Inside – Raising, teaching, loving an autistic child” – available as an eBook on Amazon, or in Paperback directly from the publishers, EmuInk.ie