Well, today it happened. The phone call I hoped I would never receive – Ian had gone missing from the centre.

They’d found the front door open.

Ian was gone.

No one knew where he was.

My blood became ice in my veins as I listened. The room around me turned black as my vision narrowed.

No, no, no, no, no, no, no, no, nononononoooooooooooooo. My soul wailed.

I had to get to town. I had to be there. I had to look for my son.

I’m not an hysterical person. I don’t think I fall apart that easily.

This instantly crucified me.

Our worst nightmare. Ian, missing.

I folded up, and sobbed hysterically.

Ian. Our angel child. Out there, somewhere.

Alone.

I walked into Neil’s office and stood there, interrupting his online lecture. I made a ‘cut’ motion across my neck. The misery on my face alarmed him. He pulled out his earbuds and looked at me.

“Ian’s missing,” was all I could say.

He told his students what had happened, and left the room.

*****************

We were in the car, my hand resting on the handbrake, about to set off. I was trying to remember to breathe. A tiny thread was holding me together. I had to be strong. I had to think.

Somehow, we had to find our son.

He could be anywhere. But we had to look. I’d stand on street corners and in city squares and shout for him at the top of my voice, in the hope that he’d come when he heard me. I’d frighten pigeons and vex strangers, and call loudly and endlessly and hopefully, for my son ……..

I had no other plan. Where do you look for someone who could be anywhere?

My phone rang again. I answered it, barely even aware of who was calling.

Ian had been located. He was safe.

I ended the call, and the thread holding me together snapped, fear and relief slamming into each other. I broke into a thousand pieces.

Two hours later, he was home, none the worse for his adventure.

*****************

Ian had walked out of the centre, and turned left. He was seen by the neighbours. But that was all they knew.

Somehow, Ian had made his way across Waterford city, and walked five kilometres to the house of my friend, Lucy.

He had walked straight in her front door. Lucy’s husband John didn’t recognise him, and had challenged him in the hallway – “Who are you?” – to which Ian had replied “Matt” (the name of their youngest son) and calmly walked upstairs to their other son Johnnie’s bedroom, where he started playing with his toys. John and Lucy have two sons with autism; Johnnie is at the same centre as Ian.

Although he might not have recognised Ian, John quickly recognised the signs of autism, and called his wife. “Lucy? We have a visitor,” he said.

Lucy walked upstairs, and saw who it was. “Hello Ian!”

I’m sure I can hear the smile in her voice as she said it. Not much phases Lucy.

She called the centre.

The centre called me.

The police could stand down. Phone calls were made to call off the searchers. Taxi drivers all over Waterford could stop scanning the streets.

And somehow, I had to breathe again.

******************

You see, if a parent says ‘my son is a flight risk’, believe them.

Please. Believe them.

Don’t go off and make yourself a cup of tea, or take a phone call, or do whatever it was that separated Ian’s carer from him that day, and gave him the time to get up and walk out.

Just don’t.

We were so lucky. We got our son back. Unharmed. For all the busy roads he crossed in the city centre, alone and unsupervised. For all his complete lack of sense and his imperviousness to danger.

He found his way to a house he hadn’t visited in twenty years. Like he has some internal SatNav, he found his way there, where – thank God – Lucy was home.

And we got our son back.

******************

Everything was going so well at the centre. Ian was enjoying his days, and had blossomed under the supervision of his two male carers. See my post “Autism : A Man’s Man”, and you’ll understand how perfect it all was.

So what changed?

Staff upheaval.

One of the male carers left, and was replaced by – you guessed it – a woman.

Now don’t get me wrong. I have nothing against women carers. Absolutely not. I know many of them, and some are very close friends. But for my son, who was tutored by women, home-schooled by mum, and supported for years by female SNAs, it was quite clear that he rather enjoyed a different kind of company at this stage of his life. He’s twenty-eight. He is a man, not a child any more. He doesn’t want ‘mummying’.

I was depressed enough that one man was leaving the centre. Now I have learned that the other will be leaving us as well. And when I heard this, my heart just sank, because in three years with male supervision, Ian hadn’t tried once to abscond.

Not once.

The first day with all-female staff, and Ian took off.

Now, how do we deal with that?

— And no, there aren’t male staff waiting in the wings to step in and replace the men who’ve left. There is a chronic staff shortage in any event. We’ll be lucky to get a college-leaver. No more for us the middle-aged man with a mass of life- and caring experience, or the young sportsman with caring experience and fitness on his side. Ah, gentle men, you have no idea how much you will be missed.

***************

It takes trust to leave your child with another person. And mine has been shattered.

For now, Ian is home. While changes are made at the centre.

And while I heal.

Somehow.

While I heal.

I want to talk briefly about communication. No, actually, I want to talk about speech and language. Which, as you’ll see, is an entirely different thing.

I’ve talked about this in my lectures to college students, breaking down the Triangle of Impairment so often associated with autism – impairment in the spheres of Communication, Socialisation, and Imagination.

Communication is a misnomer, of course. You can’t tell me a dog can’t convey his desires – to be fed; to go outside; to be loved. All non-verbal beings communicate, definitely with each other and sometimes even with us, and often very effectively.

So, for ‘communication’, please read Speech and Language.

In its simplest form, Speech is the ability to form words. Language is the ability to use them descriptively or symbolically.

Echolalia is speech. Reciting large sections of movie dialogue is speech. Learned answers to questions is speech.

However, it must never be forgotten that for the autistic child, the gap between speech and language can be vast.

Some may never bridge that gap.

Some, like Ian, may use sentences learned as speech, to answer questions or express thoughts, i.e. using speech AS language. Memorised lines from Disney movies to answer questions, that sort of thing.

And just occasionally, if you’re really, really lucky, and happen to be paying attention and in the right place at the right time, you get to witness a miracle or two.

Miracle one —

I had to trim Ian’s toenails. Because of his constant toe-walking, his toes are under constant pressure, and a couple of them are slightly deformed as a result. Cutting Ian’s toenails is a difficult process, requiring care and concentration.

Ian made his little “be careful / it’s going to hurt” noise – “oo oo oo”.

I tried to reassure him. “It’s going to be okay, my lad.”

Ian looked concerned, and in a very serious voice, he said “I don’t think so.”

I stared at him for a moment, stunned.

Lack of confidence in my abilities aside, what a brilliant response!

Happily, on this occasion I managed to get the job done with no mishaps, and all was well.

Miracle two —

I wanted Ian in the bathroom.

It was time to brush his teeth before the taxi arrived to whisk him off to his day placement for a day of adventure and fun.

Ian was taking his time, and, impatient, I knocked on his door, twice. “Come on, lad! Come on!”

Ian skipped out of his bedroom with a grin on his face, and as he passed me, he called “Sorry!”

Perfect use of language.

And a complete surprise.

Moments like that really rock me back on my heels. Why can he do that sometimes, but not at others? Why does it happen so seldom?

I sigh at my thought process, and remind myself, If it happened every day, it wouldn’t be a miracle, would it?

I am posting a beautiful poem below to say goodbye. I’m not going to be writing any new blogs on this site, certainly for now. It seems I’ve said all I have in me to say.

In case you are wondering, Ian is now 27, content within himself, and doing very well.

Thank you for your companionship as Ian and I have wandered this crooked path together.

I hope you stay well and happy.

That is all.

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

SPECIAL

by Donna Ashworth

If you love a child who’s special

in the way their brain maps out

then chances are you know

what ‘tiger’ love is all about.

The need to fight their corner

when they’re up against that wall,

the instinct of the ‘mother’

which can make you 12 feet tall.

You’ll understand the surge of love

from deep within your soul

when that little fighter reaches

another hard-won goal.

The world can feel so scary

when you let them leave your door,

your heart within your mouth,

your stomach on the floor.

If you love a child who’s different

that the world can’t understand,

you’ll know the joyous moment

when they truly learn to stand.

Your pride is off the scale,

your love a wondrous thing.

I’m glad you know the special light

that special children bring.

Yesterday was Ian’s 26th birthday.

I don’t know when he grew up. He just did.

And didn’t, of course. The young man who is also a child, forever straddling the fence of childhood and adulthood, with a foot in each but never truly one thing or the other…

If I think about it too hard, I feel tired, and occasionally a little overwhelmed.

Ian was only ever a blessing to us. Even when it got difficult. Within the sphere of our little family, everything has always run smoothly and easily. Effortlessly, almost. We know how to keep Ian happy, and he knows what is required of him on a day-to-day basis. There is a pattern to the day, and it varies very little from week to week, month to month.

I am older now, just as Ian is. And today I find my head crowded with worries about Ian’s future. Not whether or not he will be cared for and looked after; that is already sorted. More along the lines of who will sing to him when he suggests it? Who will stroke his forehead when he’s tired? Who will hold him when he’s in pain? Who will push him that little bit when he needs reminding to get dressed, or move his chair in at the dinner table, or answer a question properly?

Who will mother the forever child, when his own mother is no longer there?

For this is the crux of our biggest worry : That people with autism have a normal life expectancy. My child could outlive me by decades.

I didn’t mean to get all serious – perhaps even a bit maudlin – when I started this latest blog. These are just the thoughts crowding my head this season of birthdays, both Ian’s and mine. But perhaps they are thoughts worth sharing, as the year winds down and winter (in the northern hemisphere) makes us all more introspective.

Ian had a good birthday, with presents (books, of course) that he was happy to receive, and homemade chocolate cake, and candles to blow out, and singing – which Ian led.

And now my “little angel sent from heaven” is a strapping 26-year-old.

Do you know what makes me happiest when I look at recent photographs of Ian? The laugh lines at the corners of his eyes! There, I can see the joy he takes in life. Evidence of all those times he was happy, and laughing. That’s all we want for our children, isn’t it? To see them happy.

If I have achieved nothing else, I have achieved that.

❤️

One thing I was determined to do while I was working with Ian at home, was take notes of our work together.

This began when we very first started the therapy programme in South Africa, where each therapist made notes on what they had done with Ian that day, so the others could read it for the next session or the next day, and keep abreast of changes or progress or things to watch out for.

When I was working with Ian on my own, my reasons for taking notes were slightly different.

Firstly, if you don’t keep a thorough record of progress, how are you ever going to know – clearly and definitively – that progress is being made? It’s easy to think ‘Oh, I’ll remember’, but I certainly wouldn’t have, not week by week, month by month. I knew it would be better if I wrote it down, accurately and honestly, as I went along.

Secondly, I kept notes because I lived in fear of the Schools’ Inspector. If he paid me an unscheduled visit, would I have anything that looked like anything to show him?

So I wrote notes.

Endless notes …

I filled books with details of Ian’s schoolwork, his progress, his successes, and his failings.

Of course, the Inspector never did visit. But I still have all the books, all that proof of our hours together.

They were in a box I came across recently, labelled ‘Ian’s School Stuff’, along with assorted paraphernalia from our school-room. One of the things in there was a clip tightly holding onto a collection of laminated single words.

I’d forgotten about these. This wasn’t a sentence-building exercise. This was to help Ian with his reading.

Ian often struggled to get from one word to the next, so I would line up a group of random words (obviously words Ian could already read!), and ask him to read them as quickly as possible.

I would read them to him first, to demonstrate, and then he would have a go.

Ian struggled with this at first, falling over some of the words, and occasionally reading them really slowly and carefully, but after a while he got into it and was surprisingly good at rattling off lengthy streams of random words. And it helped Ian to read more fluently, which was fantastic.

I lined up a few of them on the kitchen table this evening, and asked Ian to read them. Very obligingly, he did. Not as speedy as he used to be, but not bad.

So.

Keep the notes.

You never know when you’ll need them.

And keep the paraphernalia; you never know when you’ll want to check if a task is still remembered!

😊

When Ian was having his bath this evening, he was in a lovely frame of mind. All smiles and good humour.

I decided to capitalise on the moment and ask him a couple of questions about opposites – not the usual ones, we’ve done those to death – but ones that would make him think. I was curious to see what his answers would be.

“Ian,” I asked him casually, “what’s the opposite of woman?”

Ian was quiet for a while, then he gave me a huge grin and said “Man!”

I laughed, but I was surprised too. Ian is picking up the most extraordinary things these days, entirely by himself.

I challenged him again.

“Ian, what’s the opposite of child?”

There was a lengthy silence while Ian thought about this one. Then he looked up at me, and answered –

“Love”

It’s not the answer I was expecting – ‘adult’, or ‘grown-up’ – but if you think about it, that is a pretty clever answer.

It’s the adults in Ian’s life who give him love.

Isn’t he amazing?

Yesterday was Ian’s second vaccination.

I don’t know what I expected. I had probably been lulled into a false sense of security by the success of the first.

It was bad, folks. Really bad.

As soon as Ian got a sense of what was going to happen, he resisted. I spoke to him gently, holding his face in my hands, looking into his eyes, and he listened and sat quietly, but the minute I tried to fold up the sleeve of his T-shirt, he pulled it down again and made it clear he wasn’t going to cooperate, twisting away from me, saying “No-no-no, please, mummy.”

This went on for five minutes. Maybe yes … he sat quietly … then definitely no.

Another nurse was called in. She held Ian’s arms from the front. I rested my hands on Ian’s shoulders from behind. And it all kicked off from there.

Ian started shouting, twisting himself this way and that in the chair. “No!” … “No!” … “NO!” … “NO!” … “NONONONONONO!”

I could feel him escalate from resistance to all out panic, and I raised my voice to call a halt to proceedings.

I shouted twice : “Stop! … Stop!” But the nurses couldn’t hear me through my face mask, over Ian.

I ripped off my mask – my one earring went flying across the room – and in desperation I shouted right in the nurse’s face –

And just like that, it was over.

In the ensuing silence, I held Ian around his shoulders, leaning my head against his neck, and I wept hot tears of shame and remorse.

Capacity bedamned, my son had shown us all, clearly and unequivocally, that he did not consent to this fiasco.

The nurses fussed over me like mother hens – I was offered tissues and tea and reassurances and a glass of water – and all I could do was hold my son’s hands and apologise to him as tears streamed down my face.

I was broken.

We left as soon as I could extricate myself from the nurses’ care, and I bolted for the car with Ian beside me.

Two days later, and Ian seems none the worse for the experience.

I am still recovering.

All I will say is this : Never again, people.

Never. Again.

I’ve mentioned before that I don’t believe autistic people have no imagination.

I do believe that just because you can’t accurately test for something doesn’t mean it doesn’t exist – and to the fullest extent.

“Three studies are reported that address the often described impoverished creativity in autism. Using the Torrance Creativity Tests, Experiment 1 found that children with autism and Asperger syndrome (AS) showed impairments. Experiment 2 tested two explanations of these results: the executive dysfunction and the imagination deficit hypotheses. Results supported both hypotheses. Children with autism and AS could generate possible novel changes to an object, though they generated fewer of these relative to controls. Furthermore, these were all reality-based, rather than imaginative. Experiment 3 extended this using a test of imaginative fluency. Children with autism and AS generated fewer suggestions involving attribution of animacy to foam shapes, compared to controls, instead generating reality-based suggestions of what the shapes could be. Although this is evidence of executive dysfunction, it does not directly account for why imaginative creativity is more difficult than reality-based creativity.” https://pubmed.ncbi.nlm.nih.gov/10478731/

“Impoverished creativity”. Isn’t that just the most awful phrase?

I have wondered many times over the years how active Ian’s imagination is – even in the earliest days, when he was in his room, chuckling to himself. What was going on in his head then? What pictures did he see that entertained him so? He was completely alone, and laughing like he was watching something really funny.

It could have been creepy as hell, but it was actually delightful.

However, when your child hears a piece of music you happen to enjoy, playing in the background as you drive around, and then asks the next day for “Brown red music, please, Mummy”, you know you’re dealing with something a little bit special.

The music was ‘Celestial Soda Pop’ by Ray Lynch on his album “Deep Breakfast”.

Does Ian have synesthesia? We may never know. But something was going on.

(“Synesthesia is a neurological condition in which information meant to stimulate one of your senses stimulates several of your senses – Synesthetes can often “see” music as colors when they hear it, and “taste” textures like “round” or “pointy” when they eat foods.” https://www.healthline.com/health/synesthesia )

And while synesthesia isn’t specifically to do with imagination, it does give us a clue as to what is going on in the brain : colours and pictures. And imagination is all about pictures.

In the course of my (albeit very limited) research for this blog, I came across a very interesting article, written by someone on the spectrum themselves — he says “People see autistic kids lining up Hot Wheels or sorting Legos by color and assume there isn’t a whole lot going on in the imagination department. As someone who spent a lot of time in organizational-type play as a kid, I can assure you that I had a vivid imagination.”

(See full article here https://musingsofanaspie.com/2013/02/12/two-factor-imagination-scale-tfis-test/ )

It was interesting, and as always, useful to get an ‘inside’ point of view.

Getting back to my son, however, I often flick through Ian’s internet searches on his iPad at the end of the day to see where his mind has taken him. Sometimes his journey is obvious – a succession of the music he enjoys, or snippets from his favourite films on YouTube – but occasionally, he has wandered into a realm where, if he does not have an active imagination, there is absolutely no reason for him to be there.

Like the day he’d Googled ‘green water splash’ —

Or ‘red circles’ (although, admittedly, he could have been experimenting with self-hypnosis with these, couldn’t he?) —

Or ‘Caribbean blue sea’ – after listening to the song ‘Caribbean Blue’ by Enya —

There is no reason for Ian to be looking at these images unless his imagination is somehow, in some way, working.

He goes to strange and unexpected places, this we know, but yesterday was a corker.

I went into Ian’s room where he was lying quietly on his bed with his iPad, and I sneaked a peek at what had caught his interest that day.

This was a new one —

The webshop for physiotherapy.

Seriously, what???

He’ll never tell us, of course, and that’s a real shame because I for one would have loved to have known the thoughts behind that search.

One thing was for sure : Ian was imagining something. I will never doubt that, and just because he can’t express it doesn’t mean I won’t feel joy when I witness it.

Every single time.

😊

My dearest Ian,

When you were born, I had no clue about the adventures waiting for me or about the challenges you would present, or the things I would need to learn, academically, personally, and emotionally.

I didn’t know then that I would have to watch The Many Adventures of Winnie the Pooh five hundred times, or that I would enjoy watching it five hundred times, with you.

I didn’t know that I would have a child who would stay home way past his teens, and will quite possibly stay home until the end of my life.

I didn’t know how much joy could be found in the smallest things, like getting a smile out of you, or giving you a hug, or watching your concentration as you try to remember the correct response to a question, or hearing you correct yourself when you misspeak.

I didn’t know then that tears in your eyes would tear me to shreds, or that seeing you in distress was the worst thing for me in the whole wide world, and that each time it happened it would be forever seared into my soul, a psychic wound from which I would struggle to recover.

My ‘little orange boy’, with the fuzz of auburn hair that stuck straight up off your head, with the golden skin and russet-brown eyes. I called you Tiger then. Perhaps I always knew you had a battle ahead of you. Perhaps your rarity of soul just spoke to me. My little angel sent from heaven. My beautiful cuddly teddy bear of a child, who glowed in dreamland as if his aura were his own personal nightlight.

You may never know what you mean to us, and perhaps that doesn’t matter. I just hope you feel safe, and loved, and special. Your autism could have broken us, but somehow it made us stronger, and we – all of us – are better people because of it. You are the keystone of our little family, the heart around which we all revolve.

I have gained so much from knowing you. I have met people I never would have met; I’ve spoken to students about autism, something I never would have dreamed I could do, and never would have done had it not been for you; I have learned about what it means to be a human on a different path; I have learned to laugh in the face of awful adversity, and genuinely crazy situations; I have fought for you; I have cried for you; and I have made friends because of you, and found my soul sister, someone I never would have met but for you.

You are an amazing human being. And your autism is 100% a part of that.

Your life has taken us on an extraordinary journey – at times a bit of a rollercoaster it’s true – but also a journey of love. I am so proud of you, young man.

Until the next time you ask for movies …

… I’ll be here.

I love you.

Mum xx

I have spent a lot of time on this blog talking about how autistic Ian is. There can be no doubt, I suppose. It’s pretty much there, in your face, front and centre.

So, in the hope of writing something a little bit different, and perhaps a little more positive, I found myself wondering: What is there about Ian that isn’t autistic?

Is there anything?

Let’s go through some areas of his life, and see …

The way he walks?

Well, almost. Except that he has a way of walking which is … gentle. Almost as though he steps carefully. He toe-walks, of course, he always has, and because of this, his feet are exceptionally broad.

We have his shoes handmade by a company in South Africa who make leather footwear, because they take Ian’s foot measurements seriously, have created perfect lasts of Ian’s feet, and the shoes they make actually fit him.

Even buying them, bespoke, from overseas and paying for delivery to Ireland, the shoes cost us less than handmade shoes would cost here – if we could get someone to believe Ian’s foot measurements, which proved impossible when we tried.

So Ian’s shoes are unusual, and the footprints he leaves are unusual, and the way he walks is unusual, too.

The way he talks?

If we discount the frequent snippets of video footage, and strange other-worldly sounds which emerge, and judge solely on his voice … maybe. If you can hear him.

Ian speaks softly and often quickly, so it’s easy to miss what he says. If he’s reading out loud, there will be strange emphasis on certain words, and no normal cadence to the sentence, so the delivery can seem a little strange.

But he pronounces words beautifully, even a more unusual word, like croissants. He does enjoy a croissant.

The way he looks ?

I suppose in photographs there is nothing to show that Ian is autistic. He looks normal, doesn’t he? Okay, his skin is paler than anyone else in his family, and his eyelashes are longer, and because of his toe-walking he has a marked pelvic tilt, and heaven forbid you ask him to smile for a photograph because you’ll get a grimace, but on the whole, Ian looks okay.

Actually, better than okay. He’s a handsome chap, and draws furtive glances wherever he goes.

The way he eats?

Hooboy. No. Definitely not. Well, not in our culture, anyway. Ian eats almost exclusively with his fingers, and his diet is very limited.

The way he dresses?

Given that Ian would happily spend the day in only his underpants – or even completely naked – he’s on the outskirts of social behaviour with this one. He’d fit right into a nudist colony. He’d be a raving exhibitionist, if he didn’t completely lack the awareness of his own nudity, or what it means to other people or society.

But he does wear normal clothes when we go out, and he wears them well.

The way he reads a book?

Almost. Until you realise that he’s read the same book a hundred times, and is flicking the pages so quickly even a world-class speed reader would have trouble keeping up. Why pause over the words when you already have them in your head?

He’ll occasionally turn the book upside down, just to see the pictures from a different angle. He could probably read it perfectly well. His brain is like that. (Mine too, upside down and backwards – I wonder where I get it from …?)

The way Ian watches a film?

Maybe, if you use the verb ‘to watch’ very loosely, and ignore the intermittent blasts of hand-flapping which appear.

Ian is happy that the film is on in the same way that his dad is happy the sport is on, behind him, with the sound off.

Television as security blanket.

The way he travels in a car?

Potentially, if you ignore the hand movements and his occasional imperious commands of “That way” (complete with pointing finger) when there is more than one road to a particular place.

His car door is locked. The windows are locked too, because he figured out that he could wind the window down and open the door from the outside. Autistic, not stupid. And he has a sticker in his window, just in case there’s ever an accident and I’m unconscious or worse, just to alert emergency services.

So where are we?

We’ve covered a lot of Ian’s life. Of course we haven’t covered every single thing – I’m sure that’s not possible – and some of it (like toileting) I don’t want to cover anyway.

But here are some positives –

Ian gives the best hugs.

He has a really beautiful smile, when it happens spontaneously.

He has a highly developed sense of humour.

He has a very good ear for music, used to sing with near-perfect pitch (before his voice broke), and taught himself to play the keyboard.

And he types like the wind. Really, really fast, accurately, and with only two fingers.

What more could you want?