What the world needs now…?

Many moons ago, when I was finding life particularly tough, I took solace in the auditory arms of three people. I credit these people with saving my life or, at the very least, my sanity. And, all those many moons ago, I found myself writing about what they taught me, right here on this blog. 

Life, somewhat less frenetic and distressing, took over and off I tootled for some years without much of a backward glance at those mental meanderings. My littlest was diagnosed with autism, a house-move and ‘new life’ kept us all focused and distracted, and the years passed.

Then, a short while ago, a new friend rather randomly stumbled across rightmotherhood, shared one of my old articles, and sparked my synapses into action once more (however briefly, I don’t yet know of course!)

See, although I’m personally struggling a little with the world as it is right now, a large part of the reason for that is because the world itself is struggling. Like, a lot. With global viral outbreak, political unrest and the division that both are causing at the most basic and fundamental levels of society, not only dividing countries, but, at the other end of the scale, families too; and with all of that invading our lives on a daily basis, through this mixed blessing we call the internet; with conflicting stories from everywhere, and no clear idea of who or what to believe any more, my own mental and emotional wellbeing are being adversely affected alongside everyone else’s. It’s huge.

So, a couple of weeks back, knowing I had to drive a fair distance and that, alone in the car, this would be a really good opportunity to listen to something grounding and inspiring (grounding and inspiring. I like that. Feet firmly anchored, while the soul is lifted…) and I looked up, for the first time in years, the very first person to aid my recovery: Reverend Kusala Bhikshu.

And I’ve been listening to him on and off, whenever precious headspace allows (which, with lots of lovely boys and a national lockdown, is rather less often than I might perhaps desire). And he is soothing my soul.

I tell you all this for two reasons:

1. If you haven’t encountered him and feel in need of some soul food, please: look him up. He has podcasts aplenty and his gentle sense of humour, whilst discussing themes of great import, is refreshing and uplifting, and
2. Today, in a snippet I managed to listen to whilst collecting number 3 son from the bus stop, he uttered these words (more or less – I can’t remember verbatim and I was driving, so I couldn’t jot it down): diversity and unity, not uniformity.

Now, the reason this struck me as so very important (and forgive me if I’m not entirely lucid on this, but it’s still really the germ of a thought, but I just wanted to throw it ‘out there’ for more exploration), is because of the terrifying polarisation we are witnessing in our societies. We must lean one way and one way only, “as long as it’s MY way”. The anger and aggression aimed at those who take a different view, people we know nothing about, whose lives and experiences are a mystery to us, is breathtaking. The dehumanising of those who feel, think or believe differently is beyond distressing. We must, apparently, all think and feel the SAME. Anyone who doesn’t have the same view as the person expressing his or hers is an idiot (at best!)

As an aside, I listened to Brene Brown recently, who was discussing this idea that ‘You are either with  me or against me’, there is no middle ground. Of course there is middle ground. Of course there is room for uncertainty and doubt, for humility and investigation. And of course it is utterly fallacious to suggest that just because I disagree with you, I am your enemy.

I’m going to come back to this when I’ve had more time to work it through, but for now, my immediate response to this “diversity and unity, not uniformity” was this: I can still love you, even if I don’t agree with you.

I’m not sure anything is more important right now.

To paraphrase…

Hello.

It’s been a while.

Did you miss me?

Right, I have some instructions for you:

1) Turn off the lights, close the curtains, close your eyes. Maybe even put some headphones on.

2) Turn up the volume, press play and… listen. Really listen. To every word.

And now, for the sake of clarity, here they are, those words:

 

There is so much here. So much said between the lines and try as I might (and I have begun to a gazillion times) my efforts to paraphrase just sound trite.

So, in a nutshell:

1) You look at the world through fresh eyes, and it looks amazing. You dream. Big. You are filled with optimism. It’s a rainwashed street, shiny and fresh. It’s a blank canvas, full of promise. It’s castles in the air.

2) You are dealt a blow. Given a lesson. You are sobered up. Fast. You grow up. Your world becomes real. You challenge your beliefs. You change your perspective. And it hurts. Hell, it really hurts.

3) You emerge from that cave.  You understand now that it isn’t what you dreamed it was. But, and here’s the thing, it isn’t what you thought you learned it was either. In fact, you don’t really get it. You just know what it isn’t. Your eyes are open, but – now – so is your heart. And your mind. And you have lost so much. But… hey. Look. You have gained so much, too. It’s okay. Let it go.

So, look back at what you believed, at that younger, more naive and innocent you, with fondness. It wasn’t all wrong. And you know? It got you to where you are now 🙂

And, as I heard Wayne Dyer say the other day:

So many things that I did in my life, I look back and think that I would never do those things today. And yet all of my past actions have contributed to helping me be the man I am today. Say to yourself, “I had to be that person and I’ve learned from him (or her).” Forgiving yourself is every bit as important as forgiving other people. You did the best that you could, given the conditions of your life, and you can’t ask any more of yourself or of anyone else.

 

Joni Mitchell. I salute you.

Mr Potato Head

I’m mostly over here at the moment. So if you feel like popping over to say hello, I’ll be happy to see you there 🙂

The Ted Diaries

Mister Tatato Ed is the new crush.

I mean, it’s official. They are in love. They go everywhere together: bed, bath, nursery. The last cry at night is “Mister Tatato!” and the first in the morning…. When I go to bed, I spend some time in his room rummaging underneath him for the requisite parts, fearful that it’s an uncomfortable sleeping partner, though he appears oblivious to the whole affair.

So imagine my chagrin when lovely Linsey at nursery asked if it would be possible not to bring him in any more. You see, the other little ones (and let’s remember they’re only two and three years old) know very well who Mr Potato Head is. And they love him, too. They are liable to become a little distressed when Teddy doesn’t allow them a turn. And Teddy, for his part, becomes a little disgruntled when they start getting too…

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Lemons

You know that expression, right?

“When life gives you lemons, make lemonade”

Or alternatively:

Well, it struck me just now that there are basically two camps you can fall into when you hit a bump in the road and fall off your bike. It’s probably obvious and it’s sure to be something I’ve written about before, in another guise, some time ago. And I don’t want to get all verbose about it, since it’s really just the simplest equation in the world.

When life throws you a curveball, you have a choice.

You can add it to one of two lists.

You can add it to your victim story list: “And then, poor me, this happened.” You know the one, right? And you know when you’re on that kick because you’re not focused on what actually happened, or how best to deal with it, or how to fix it, but you’re reciting in your head how best to tell it when you next meet someone who’ll listen. And you know that you’re learning to kick that habit the moment it begins to feel less than comfortable reciting the same tired old lines; when, and I know you know this one, you’re actually beginning to bore yourself.

Or you can add it to your survivor list. You can add to the strings on your bow. You can hold your head up and say (to yourself because, come on, who else needs to hear it anyway? Whose opinion of you is more important than your own? Seriously. Whose? The number one person who needs to love and approve of you is… uh-huh… YOU) “I survived that, and this is what I learned.”

Victim consciousness is a honey-trap. You think you’ll feel better telling someone how unhappy you are and how it’s anyone and anything else’s fault other than your own. But you don’t. You never ever do. It just perpetuates the misery.

But when you take responsibility for your own happiness, it can change in a heartbeat.

Last night, watching a film with some of my family, one of my sons was, frankly, bloody miserable. From an objective perspective, I had grasped the storm in the teacup, I could see how simple it would be to forget it, to get over it, to let it go. But it isn’t something you can do for someone else. They have to do it for themselves. And it isn’t always easy. And unless you’re Buddha, you’ll still have times when you struggle with it.

In a lull, I leaned over to him:

“The only person unhappy in here,” I whispered, “is you. And you don’t have to be. You can choose to let whatever the perceived grievance is… go. Just let it go.”

He guffawed, somewhat sarcastically, but I know how it works with him. Plant the seed, walk away and let him think.

Shortly afterwards, during a particularly heavy and gruelling scene, and as though nothing had happened:

“If you close your eyes and listen to Tom Hanks in this film, it’s like Woody’s swearing. I can’t be the only one to think that, right?”

The rest of us fell about laughing and the entire atmosphere was diffused.

Because he chose to let it go.

Small example, simple principle.

Massive life lesson.

Perfection? Pfffffft!

I was talking to some friends online today, about parenthood, its quagmires, minefields and opportunities for guilt and self-doubt. We were discussing the fact that, however hard you try, however much you put into it, however you beat yourself up, you’ll never get it ‘right’. You can do it well. Or sometimes you’ll do it badly. You will have successes and failures. Some things will make your heart sing, others will feel like total defeats. And when it goes well, you will file that lesson away for future use in similar circumstances. And when it bellyflops and leaves you scrabbling in the dirt, you’ll file that away, too. And try not to do it that way ever again 😉 That’s not to even mention the decisions we make for ourselves that impact our children, and the hours, days and weeks of agonising over them… Being a parent is a part of our journey, of our learning experience through this life and it is as much about teaching us to be a more compassionate human being as it is about guiding them through their own pitfalls and giving them the tools to be independent and compassionate adults in their own rights. Where and if at all possible.

Because our children also have their own paths to follow. They will have issues they have to deal with when they are older, and we cannot avoid that. We cannot make it perfect for them. “Perfect” doesn’t exist! I had a long conversation with my eldest son a while ago, during which I explained that I would always do the best I could for him, but that I knew very well that some of the decisions I make during his childhood will translate into ‘issues’ when he’s an adult. Our issues come from our experience, and for the longest time our experience is our childhood, no matter how perfect our parents were or how hard they tried. And that isn’t their fault (I don’t find that especially easy to write, by the way, but I do know it’s true). It’s the nature of the beast.

Ah. “Perfect doesn’t exist. It didn’t feel right writing that. Because, actually, I don’t believe it. But not in the way I meant it. Not that I mean to tie you in knots.

What I mean is that you, and your child/ren are perfect. You are the perfect tools by which to learn… whatever it is you are here to learn. Each of you. Your combination is perfect. I know. I know this sounds controversial. But it isn’t really. It’s easy to get bogged down in horrific specifics but that would be to misunderstand the point. If, for example, you found yourself in an abusive situation, you would learn from it. Whether that situation had an ultimately positive or negative outcome, it would still be a learning experience. And the younger you are, the more helpless and dependent you are, which is why these ‘issues’ have to be tackled when we’re older. So, just because it’s a simple equation, that doesn’t mean it isn’t unbearably difficult sometimes. Does that make sense? I hope so.

In slightly other news, I found this today. I loved it. An extremely healthy lesson in empathy:

Walk a mile in my shoes

If this… then…

First of all Happy New Year! I love this time of year. I know, I know, it’s only a calendar date, it has nothing to do with the seasons, the equinoxes, it’s all made up… But still, somehow… It’s New, isn’t it? And there’s something almost irrepressibly optimistic about something New.

I disappeared for a while. That’s kind of symbolic, I think. Various technical complications meant that this site was unreachable for a spell, then reappeared in some bizarre form, and today I have found it again. Funnily enough, I rather feel like I’ve found me again recently, too.

Last year, the year behind me, became rather unfocused towards the end. Or perhaps mono-focused is a better way of putting it. Too much was overlooked and fell by the wayside. I say this without guilt or rancour because it was very positive, if exhausting, and because I don’t believe in regrets, but in lessons learned. This Christmas season has brought a fabulous refocusing.

The mot du jour is balance. And it is I this I shall endeavour to hold onto into 2014.

There we have it – my rather over-worded Resolution. Because, you know, I don’t think it does any of us any harm at all to refocus on a fairly regular basis. Stop, take stock, whittle away what doesn’t make your soul sing, nourish what does…

I was listening to Jack Kornfield today. Again, somewhat by accident, I appear to have managed to sign up for Google Play and I haven’t the faintest idea how to unsubscribe, so I’m making the most of it 😉 And I was very pleasantly surprised to find one of my gurus there.

And the part that stopped me mid-mushroom chopping was breathtakingly simple.

It always is, isn’t it?

And then, when you try to explain it to somebody, you’re in danger of being considered a simpleton yourself.

I’ll give it a shot anyway.

He said this:

If this…. then that.

If not this… then not that.

And, he said, that’s life.

It is a simple string of actions and consequences.

But the problems (and I’m no longer paraphrasing Mr Kornfield here) begin the moment we start to personalise those actions – your actions, my actions, his actions – we get into hot water. Forget all that, it mires you in anguish, anger, guilt, the desire for vengeance. And the only thing any of that will do is keep you locked in that time.

In that past.

In that last year.

Why not try:

If I let it go, then I can move on.

See, I said it was simple. And I’m not convinced I’ve conveyed it the way it makes sense in my head. I mean, I hope it’s obvious that if your actions were detrimental to another, you make amends, you make your peace, you take your lesson and you move on a better person. Or that if you were the person ‘wronged’, you can forgive, whether it is desired by the other person or not, take your lesson and move on a stronger person… Those parts, I hope, don’t need saying.

After all, as wonderful Jack says:

“In the end, just three things matter:

How well we have lived
How well we have loved
How well we have learned to let go”

 

Dietary requirements

I know I’ve mentioned before that Teddy’s ‘connectedness’ with his environment is directly linked to the healthy functioning of his little body. If Teddy’s system is happy, he is with us. If it is distressed, he is disconnected. It’s really terribly simple.

But as simple as it may be, we didn’t work it out for the best part of two and a half years. The pieces of the puzzle fell into place in a beautiful dance of awakening.  Last Easter we finally admitted to ourselves that something was ‘not right’ with Teddy’s development. His father was talking to his own mother about it and they discussed autism. She then mentioned an article she had read about diet, and… the rest is trial and error.

Through painstaking trial and error, in fact, we have discovered that Teddy’s tummy is happiest when he is on a wheat-free, dairy-free and salicylate-free diet. What are salicylates? I hear you ask in horror… I did too 🙂 (follow the link to Wikipedia for more) The unfortunate news is that they are a naturally occurring pesticide to be found in all those foods you are proud of yourself for persuading your babe to eat: broccoli, for example, which Teddy loved. Grrrrr. And so began a couple of months of being chained to the cooker whilst attempting to find foodstuffs and alternatives that our littl’un could eat and tolerate. One of the biggest problems with intolerances is that the ‘alternatives’ have so many additives, preservatives, and last but not least, substitutes that are also untolerated, not to mention the fact that they are ridiculously overpriced as they have a desperate captive market, that they are simply not viable as the alternatives they set themselves up to be.

Just as each child is different, just as each child with autism is different, so is each child’s digestive system and tolerance / intolerance makeup. And with Ted, we have discovered that while wheat is a big no-no (we also avoid it due to intolerances – check out Wheat Belly if you are remotely concerned you might struggle with its digestion, too), its ancient predecessor spelt is just fine. So home-baked spelt bread, biscuits and cakes baked using spelt instead etc are all fine, if a little labour intensive. We have tried a plethora of milk alternatives: oat milk (he was horrified), KOKO – coconut is no good, soya he can’t tolerate and almond milk contains, however trace it may be, cyanide, and the one he finally settled on is rice milk. While he won’t drink it, it can be substituted for any milk in any recipe. And PURE sunflower margarine, or Vitalite takes the place of butter. For a long while he had no cheese at all, but we have now worked out that goat’s cheese – the hard white variety – is okay.  The only fruit he is allowed is Golden Delicious apples, peeled and cored, or pears. Ditto. But a little imagination goes a long way. While shop-bought sausage rolls are no good, an allergy-happy alternative is mince with onions, grated pear, parsley, in a spelt and PURE pastry. And they’re delicious. But it is time consuming. It’s back to basics stuff. The simpler the better. All home-cooked. Motherhood at its most primal. The latest technologies, fast foods, easy meals… they may just as well not exist…

Can you hear the exhausting labyrinth of ‘cooked, rejected; cooked tolerated; cooked, loved’ through this monologue? 😉

There is a wealth of cookbooks out there, and a wealth of information. You can find recipes on Pinterest, on Mumsnet forums, oh everywhere. But the difficult truth is, all you can do is work it out for yourself.

But it is all worth it.

For those mornings after the days you got it right, when you open his bedroom door and, rather than a small person who barely notices your existence, who is locked away in his own little world, a bright-eyed and bushy-tailed toddler bounces up to you, looks you right in the eye and says “Hello Mummy.”

That’s when you remember what it’s all for. ❤

Teddy and Daddy.
Connected.

Note: I would dearly love for this, too, to be a place where we can share recipes. If you have any successful recipes you’d like to share, please do comment and we’ll get a page together where I can post them for everybody. Thank you. 🙂

Trying on a new hat for a good fit…

I’m considering having this made into a t-shirt 😉

Generally speaking, in our daily lives, we are fortunate enough to have a wide circle of loving and understanding friends, who have made it their mission to investigate the situation we find ourselves in with Ted, and how best to interact with and understand him. Those who cannot understand it, or who expect us to ‘carry on as normal’, have naturally fallen by the wayside. Without rancour, but it is much too stressful to pretend to be something you are not, to have to keep apologising for something that should require no apology, to navigate places and people who have unrealistic expectations of what is possible. It is a much less stressful proposition, we have learned, to have a meal with friends at their house, or at ours, than to attempt to sit through a meal in a restaurant. Although we are learning those little tricks I have mentioned before (stocking up on little toys from pound shops etc) to get through such situations, should we have to.

We don’t encounter too many folks who clearly weren’t told not to stare as curious children, but the sad fact is that we tend to avoid areas and situations where there are too many people or too many expectations to conform to a standard mode of behaviour since, as I have mentioned before, judgment is never far behind when you are attempting to live a ‘normal’ life out in the big, wide world, with an autistic child in tow. And of course, as I have said before, part of the issue is that there is nothing obviously marking an autistic child as autistic. By and large, an autistic child looks like any other child. Which reminds me, I also love this:

Because the fact is, while autism has many common traits, no two children display the exact same ones, and like every other child on the planet, each is different. So there is a very real danger of making assumptions or basing expectations for a child with autism on your experience of another, totally different child.

At the outset of Teddy’s investigations I, too, was guilty of the sentiment behind one of the most common exclamations I hear:

“Oh, I thought they weren’t supposed to be able to do that!”

It’s a difficult statement on many levels. First, your child is being lumped in with everyone else, which is never a comfortable situation, even without the challenges that autism brings. Secondly, it can engender a very uncomfortable desire to defend the diagnosis and, if you are not careful, you can find yourself listing all the ways in which he does conform to it. That brings with it a horribly dirty feeling of betraying your child, since you spend the vast majority of your life with this small beloved person focusing on the positive. On what he can and does do.

A simple example to demonstrate this point is that many autistic children cannot stand to be touched. Teddy, on the other hand, spends that small portion of his life that he is not running around his immediate environment, climbing furniture, or demanding food, snuggled into or onto either of his parents, usually with the command: “Big cuddle!”

You know what? It’s a minefield. You think one thing is positive and a sign of hope, and then someone in the field of paediatric care comes along and says “Ah yes, they often do that. It means…” something completely opposed to the hopeful spin you had given it.

But no matter what anyone else thinks, says, or has experienced, Teddy surprises and delights us every day. The moments in which we throw one another puzzled or dismayed glances at some particularly troubling new development or behaviour are regularly and completely eclipsed by the moments in which our hearts and souls soar with love, pride and joy at some tiny, tiny milestone we were never sure he’d reach. Speaking to his occupational therapist the other day, I said to her “It’s baby steps, really…” and she looked at me quizzically.

“Have you said that before, during this meeting?”

“No. That’s the first time.”

She paused.

“Then it was one of the mothers I saw this morning. The exact same words, in the exact same tone.”

There’s a reason for that.

As soon as the word autism has been heard (and you will never unhear it), the facts, experiences, and literature ingested and digested, the biggest and most helpful thing you can do is open your mind (your heart, of course, is already cracked wide open) to everything. And your eyes and ears. Because, if you are not careful, you can miss those baby steps.

Two years ago, when Teddy was progressing more or less as you would expect for an 18-month old child, he could tell you all the sounds the animals make. It was one of our favourite party tricks and I remember very clearly the pride we felt as we heard his beautiful responses.

As he became less and less verbal and responsive, he stopped doing that.

But with the acceptance of his challenges, investigations into changing his diet which produced immediate and dramatic results, we have watched him slowly coming back to us.

Driving to nursery the other morning, we passed a field of cows.

“Moo,” said a little voice from the back seat.

Baby step. Don’t miss it!

“Yes…! … Teddy? What does a sheep say?”

“Baa!”

“Yes! What does a dog say?”

“Woof woof!”

Once, such responses were taken for granted. Now, the smallest response can set you up for the rest of the day. Once, I was grateful for big things, and took the rest for granted. Now, the smallest things rock my world.

If you want your child to be understood, I have begun to learn, then you need to teach people how to understand him.

Peaks and Troughs

I don’t think my heart has ever been this heavy.

But, paradoxically, I don’t think it has been as light either.

Which, I suppose, brings a kind of balance to life, doesn’t it?

Yes, we’re on autism again 🙂

It’s all so relatively new, and we’re wading through it, learning more each day, struggling through the hard times: the unpredictable and sudden lashings out and meltdowns; rejoicing in the good: taking Linsey’s hand and walking into nursery without a backwards glance. Grateful, oh so grateful, for people like Linsey, who understand. And friends, too, with children on the spectrum, or with other challenges, who are not only mines of information, but incredible support. These are the ones (and you know who you are) to whom you can make confessions nobody else would really know how to respond to. You can say to them “I don’t know if I’m cut out for this” and they know what you mean. They know you don’t mean “I’m about to run away, this is too much”. They know you do mean “I’m struggling. This is tough. Sometimes I just can’t get my head around it”. They know you’re not feeling sorry for yourself, but that you are full of worries: how will he be accepted by the world, what will he struggle with, how much will he be capable of, will he ever have any independence, how much has he progressed already, what can I expect for him, I don’t know I don’t know I don’t know what’s normal…?!

And then they tell you you need an SEN. And you look at them blankly. “A Statement of Educational Needs” they explain. And you nod as if you suddenly and miraculously understand. But you don’t, really. So you own up. Why? What is it for? “It’s so he can get the help he’ll need.” Oh. It will tell you how severe he is. If he gets a level this or a level that will make all the difference. You find yourself hoping he gets a level that so he can get more care, even though a level that means he’s more challenged… And you chide yourself for wishing such a thing.

They ask you to fill in a form about him. They explain that they will, too, and that when you read theirs you mustn’t be dismayed by how negative it sounds. It’s just so he can get the help he needs.

It’s a strange in-between world you’re asked to inhabit at this point. You spend your life looking at the positives, noticing the tiniest yardsticks of progress: “He just said ‘Where ‘loon gone?’! That’s a whole question!” “Did you hear that? He just said ‘Door’! He wants you to open it!”
And then there’s the other place where they want you to look at all the challenges, all the difficulties he has, all the things you spend your daily life glossing over, ignoring, attempting to improve without actually saying them out loud. You find yourself on this strange rollercoaster of believing the best whilst being asked to prove the worst.

I don’t mind telling you it’s tough.

Then you have nights like tonight, where you’re plum tuckered out with it all, and he’s just dumped two pints of water out of the bath all over the floor, and your strength is waning.

And you get him out, onto your bed to get his jim-jams on, and his chubby little arms snake around your neck. He sticks his little lips out, as he’s seen the frog do in his favourite film, and he pulls you in for little hot kiss after little hot kiss. Then he just holds you, around the neck, your cheek on his cheek, and before you know it, his breathing has become deep and even and he’s fallen asleep.

His world is exhausting.

And you dress him through his sleep, and deposit him in the strange makeshift bed on the floor (because he refuses to sleep in a real bed) and you’re on a strange and wonderful high.

Those little arms are still around my neck.

And, believe me when I say this, because it’s from the heart, suddenly I remember: I’m grateful.

Addendum: I guess, what I’m really trying to say, is that it’s all too easy to lose sight of Teddy in the sea of ‘requirements’… And Teddy, put simply, is perfect. Just as he is. 🙂

A Hospital Appointment

This morning was a bit of a test, frankly.

As Teddy’s parents, we go through many different, ‘new’ experiences regularly. And today was one of them. There were, however, many lessons learned. Of course.

First, I’ll lay out the situation.

No nursery school this morning: Teddy had a hospital appointment. At 9 o’clock. In the next town. With four big brothers to get to school first. That, in itself, was a bit of a feat.

A hospital appointment is, to be blunt, one of the most difficult situations you can face with an autistic child. You can choose whether or not to go to a restaurant (and more often than not, we choose not – we’ve walked out of too many to particularly want to keep at it). But a hospital appointment for your child is something you cannot opt out of.

I decided it was best to ‘come prepared’. I peeled and chopped up some apple (Golden Delicious, the only type his diet allows) and put it in my handbag, along with a tub of homemade cookies (Ted-diet-friendly) and his cup of water.

Simply getting to the right place was a nightmare. Teddy is very big for a three-year old. He wears aged 4-5 clothes, and they won’t fit for long. He is quite a weight. While his daddy was getting change for the exorbitant hospital car park fee, we hurried to his appointment. Allowing Teddy to walk under such circumstances means myriad detours, sit-down protests and much delay, and we were already 10 minutes late. So I carried him.

I had assumed we would be in the same place we normally are, where there is a wonderful big waiting room for children, filled with toys of many descriptions, pens and paper and very few other people. But they turned me away – opthalmology is at the opposite side of the hospital, we were due 10 minutes ago, and after struggling to keep him with me whilst announcing our arrival, after he had run off into various different rooms he shouldn’t have been in, disturbed various different consultations, because the lady at reception kept talking to me and it is impossible to restrain him, we were placed in a waiting room full of other people, mainly adults. There was a rather woeful area for children in one corner, containing two toys and a play kitchen with all accessories missing. I made the mistake of switching on the Peppa Pig toy. Don’t get me wrong: Teddy was thrilled. There’s nothing he likes more than pushing the same button over and over to hear the exact same sound. Again and again.

I can’t say the same for the rest of the waiting room.

So, when he was distracted by something else, I switched it off.

Which is when he decided to run around the room, dragging his ‘nuggie’ (a blanket) behind him, trying to put his fingers in the whirring fans.

By this time, of course, as we have come to expect, the looks were beginning. The ones that say “Can’t they keep him under control?” or “What’s wrong with that child?” And my smile has become a bit more fixed, the stress levels have risen. And finally he was called.

The lady who saw him was an absolute sweetie-pie. But we had once again made assumptions we shouldn’t have. She was just the first of three. She was totally adorable with him, had obviously done this kind of thing before, managed to get him to cooperate by not being precious about what he touched or played with in her office. She was incredibly quick and efficient with the awful eye-drops to dilate his pupils.

But then.

Then we had a 20-30 minute wait until the eye-drops worked properly and we were seen by doctor number two. We didn’t want to go back into that awful waiting room. The walk to the other one, the other side of the hospital, would take 10 minutes at Ted’s pace and then require that we drag him away from the Wonderland of toys to fight and scream our way back again. We decided to try to tough it out on the chairs outside their rooms. We had brought the Kindle he loves playing on – it has puzzles and games that keep him very happy.

Normally.

But it also plays the alphabet videos he loves to watch and we had no wi-fi. And that, of course, was all he wanted to do. And there is no way he will sit still if he is not occupied.

So he began to roll along the floor. There’s nobody around. He’s not doing anybody any harm. We let him. He crawls a bit, gets up, walks to the doors at the end of the unpopulated corridor (all the busy-ness is the other end), says “Bye bye” and tries to open them, runs back to Daddy… To and fro.

I was relieved. He was running around an area empty of people or sensitive equipment, where he wasn’t disturbing anyone or getting into any trouble. He was mobile and therefore happy (though his “Bye bye” indicates his wish to leave, of course!)

And one of the staff asked me to stop him and keep him away from that end because it was where the theatres are and people needed access (which, of course, he wasn’t actually blocking).

At this point, I’m afraid, the rawness of the situation, my still newness to being an ‘autism mum’, the stress… I said “He’s autistic. I’m just trying to keep him happy and stop him disturbing anyone else.”

Then things started moving. He sat on his daddy’s knee (just) while I went to talk to them and they suddenly started bustling to see if we could be seen more quickly. My pent-up frustration with the nurse turned to admiration and gratitude as she began to move to get Teddy in.

Two more doctors were consulted – one who wanted to see if he would need glasses (thankfully he didn’t. Imagine keeping them on!) and another who wanted to decide if he needed an MRI scan, electrode-tests etc. Thankfully she, too, when faced with our assurances and the evidence of her own eyes that his eyesight and nystagmus were so vastly improved they were barely perceptible any more, decided he didn’t need them either.

Both of these experiences involved a lot of wrestling with a very strong small person, cajoling, exaggerated play: all ploys to try to get to see his eyes. He was an angel. Not that anyone without knowledge of autism would have seen it that way.

Job done. We left. With more than a sigh of relief.

So, exhausted and battle-scarred, these are today’s lessons:

1) Ascertain, before going to an appointment, exactly what you are going to be there for, and how long. Our appointment letter was vague in the extreme, no one had explained beforehand what would happen, and we had wrongly assumed it would be a one-person, in-and-out affair.

2) Visit the pound shop and stock up on small, entirely new toys just for the occasion. Had I not assumed we would be in the waiting room with all the toys, I might have thought of this in advance. It is amazing how long a new toy can distract. And as soon as the novelty wears off, a new one can be produced. This is a trick I learned many moons ago when flying with his big brother, then a young toddler. But it would work very well with Teddy.

3) People do not get autism. Nor can you expect them to. As our first doctor this morning remarked: “The problem with autism is that you can’t see it.” I have read on so many forums the enormously difficult experiences and comments parents of autistic children have to handle on a daily basis. People wrongly assuming it’s a ‘discipline problem’, ‘they don’t look like they have anything wrong’… I found myself, in that waiting room, wishing I were wearing a badge or, as that same doctor put it, had walked into the room and announced it. People may not get, just by looking at him, that Teddy will not behave as they expect, but if you tell them before they have a chance to disapprove, then they have the opportunity to exercise compassion rather than judgement. This is one of the fundamental lessons for me.

I appreciate, of course, that there are many different people in our world with many different challenges, many of which I don’t have the first clue about. But who becomes passionate about a cause? Someone who has experienced it, is living it, whose life has changed because of some association with it.

Through my relationship with Teddy, I have come to realise that his biggest challenge is not autism. His biggest challenge is the lack of awareness, through no fault of their own, of the society in which he lives, about autism. Were people to have a clue (and it is hard to express how grateful I am when I meet someone who does) about what it means to be autistic, Teddy’s immediate environment would, overnight, become a more accepting and hospitable one. And, by extension,  families with autism would no longer feel that they live on the edge, on the outside looking in.