A little plea…

Well now, it’s an awfully long time no see. For which I apologise profusely. But we’re all still here, trucking along, doing our thing, noses to the grindstone.

And amongst suspected heart attacks on Christmas Day, large barbershop orders and the general chaos that life with five children, a family business and a house which, frankly, needs gutting and doing over to boot… well… little Ted has just kept his head down and got on with it. Christmas has been and gone, but still he is obsessed with Halloween. He sings Halloween songs morning, noon and night. He knows the lyrics inside out. But still he struggles to communicate anything except his basic wants and desires.

In an effort to better engage him, I took to the Interwebs today to ask the anonymous experts out there how, as a parent, I can help him to communicate more spontaneously with the world about him. Most of the suggestions, of course, are actions we have already taken, activities we are already engaged in. But one of the best things we can do, it seems, is read with him. For the longest time, he wouldn’t sit and have a story. Which is one of the few simple pleasures I have always enjoyed with my children, and it broke my heart that he wasn’t interested. I had resigned myself to life without bedtime stories until, one day, he did! And now… as long as you get the story right, he loves it.

It started at school with We’re going on a bear hunt… which, for those of you that don’t know it, is this one here.

The latest that delights him is Hairy Maclary from Donaldson’s Dairy here, for those interested.

 

His favourite part is the appearance of Scarface Claw:

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Today, we bought Please Mr Panda and it’s an instant hit. The combination of minimalist but engaging illustration, and minimal, simple text means that Ted can read it, relate to the words, describe the emotions on the faces of the characters (“He’s crying” etc) and laugh at the surprise page (the Scarface Claw equivalent).

So, if you know of any similar books, books that are simple, engaging, relateable; with not too many words, but just enough, would you pop a note of them in the comments? To have the kind of connection, eye contact, mirth and cuddles that Please Mr Panda brought today makes this Autism Mumma’s soul sing and brings hope for the future communication of my favourite five-year old in the whole wide world: my Ted

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A Grand Day Out

I had to name it A Grand Day Out in homage to Ted’s current fixation with Wallace and Gromit, which is a delight to hear him attempt bravely to pronounce 😀

Just a little insight into how Ted, aged 5 and a teeny bit, rolls.

It is important at this point to note that the pushchair, which we once believed was going to be necessary always, is now a thing of the past. Ted walks. He has reins as he has a tendency to dart over, into, through, out of or straight in front of pretty much all the things he shouldn’t…
“Flight risk” is the term, and the reason we have permission to pick him up and drop him off inside the school gates….
*gulp*

So.

He walks.

Which is A-MAY-ZING!

But not uneventful.

I will say it in pictures, which seems to be the way this is going these days ❤

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This is the dam at Derwent Reservoir. Having marched across it many times in the past, with a pushchair, I had no concept of how interminably far it can be… Until yesterday!

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This is the reservoir, shrouded in mist, which we were hoping to walk around and take pictures of. Until we realised it was going to take quite a long time to get over the dam. I sent Daddy ahead with his camera and tripod and contented myself with tootling along with Ted the Snail and documenting his miniature adventures instead. 🙂

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Ted. Walking backwards. Very slowly.

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Giving me CRACKING eye contact! ❤

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Making it his mission to pick ALL THE MOSS off the wall… It was a big wall. There was a lot of moss…

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Checking out the (mercifully fenced) HUGE drop the other side of the dam. And refusing to tell me what a sheep says.

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One of many non-violent protests. “I’ll just sit here.”

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And finally…. When those little legs refuse to go any further. And those little arms are lifted up with a “Come ‘ere”… There’s nothing else for it.

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Thanks Dad ❤

#keepthefaith

I have five sons.

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They range in age from 5 to 15 years old.

They are all completely different. Completely. Although there are some similar physical traits, in personality they row their own boats. They, as the saying goes, march to the beat of their own drums.

And I find it amazing, fascinating, inspiring and endlessly entertaining. I absolutely love watching the young men they are becoming. Without any trepidation. With total delight.

Except for Ted.

Well.

Let me rephrase that.

Ted inspires me every day. Every day I watch him navigate his way through a world that he really doesn’t understand. There are little well-worn grooves that he trundles along: when I get up I get into bed with Mummy and Daddy. They give me breakfast. They dress me. I go to school. I kiss them goodbye. I hang up my bag and coat….

He may balk from time to time because, truly, the place he most likes to be is at home. At home, very little is demanded of him. At home, he can be autistic without scrutiny, judgement, difficulty. And, actually, it’s kind of that way at school, too. There isn’t a morning that he walks in without some little person passing him and saying “Hiya Teddy” with little expectation of acknowledgement. Their acceptance of him is a lesson many adults could do worse than learning.

My eldest son is looking at sixth-form college for next year. He has fabulous grades across the board. He is presentable, self-disciplined, warm and friendly, kind and compassionate. I have no worries about him. I see his future (you know, within the grand scheme of stereotypes and ‘normal lives’) stretching before him with (all things being equal) barely a hiccup.

Tonight, I tucked Teddy up in his bed. We did the old learned-and-repeated-every-night-without-our-even-knowing-it-had-happened “Night night baby. Sleep well. See you in the morning. I love you.” And he drifted off to sleep, me sitting by his bed.

Once he was safely snoring, I leaned over for a last kiss before leaving the room. My heart swelled. “I love you so much,” I whispered. And my mind leapt, as our minds so often do, to thoughts of his future. And the icy fingers of fear threatened to tighten their grip on that swollen heart.

The required mantra for this situation is the total opposite of that for his biggest brother. For him, it’s “Fly! Be free! Spread your wings!” The trajectory is, (as far as we can), knowable, predictable, normal.

For Ted, it’s “Keep going. You’re doing an amazing job. That was GREAT! Today was really good.”

We cannot know, now, at the tender age of 5, how much he will be able to communicate one day. He is in mainstream school, repeating his reception year thanks to his late August birthday and the understanding of an incredible village primary. He has tender, loving support that, in each meeting, provokes tears of gratitude in both of his parents.

All we can do. ALL we can do is take one day at a time.

But you know what that does?

It makes life a whole lot more immediate, exciting, unpredictable.

And for every difficult moment, the next tiny miracle follows just a heartbeat behind.

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Keep the faith ❤

A Book of Memories

Cover

I have a new project, in an effort to help Teddy with communication, and I’m sharing it with you in case it’s an idea you might find useful yourself 🙂

We are starting a Memory Book. And this is its cover.

It’s just a scrap book, full of photos.

Each page will contain pictures from a day out, or a holiday, or… anything worth recording or worth an attempt at discussion, really.

I’ve bought a little printer to make it easier and more likely that we’ll persevere – no trotting out to get them printed elsewhere.

We’re going to start with yesterday’s outing to Kirkley Hall and Alston.

We have photographs of wallabies, woodland walks, pausing for a snack, crawling through pipes, finding Nemo…

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Because after our day out yesterday, as I was talking to Teddy at bathtime (note, talking to, not talking with) it struck me that he doesn’t do the past tense. He doesn’t get it.

If you say “Didn’t we have a lovely day when we went to the zoo?” he hears “zoo” and panics, because it’s not time to go to the zoo now, it’s time to have a bath…

But I persevered. I ran through the whole day. “Did we see snakes?” “NO!”

And when I said “Do you remember, we were sitting in the car, eating Chips and Red, and we saw a biiiiiiiiig rainbow?” something jolted in his face. And he got it. And I thought, if we put the two together, the narrative and the pictures, we can safely talk about our experiences without anxiety that something different is happening now

So, the Book of Memories is born.

Wish us luck! 🙂

Hello, my friend

it’s been a while 🙂

Life has been busy.

Well, when isn’t life busy?

But the muse hasn’t really been upon me. For no good reason, actually, since there has been plenty to talk about in Teddy’s world.

(This may be a little long-winded. It may be a little rambly. Mostly, I’m just going to try to let the pictures do the talking. Bear with me).

He has just finished his first year of school.

Let’s just let that sink in a little, shall we?

He has just finished his first year of mainstream school.

Look, I’m not staring any of those tricksy gifthorses in the mouth, but to be able to say he did a year is already more than we knew to expect.

Of course, it does help that he goes to (sure, we may be a teensy bit biased) the loveliest primary school in the whole wide world with the most compassionate, empathetic and downright blooming loving teachers… but he did it. And they’re happy for him to repeat his Reception year this coming year to give him a REALLY good start. After all, he doesn’t actually turn 5 until a couple of days before he’s due to go back!

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A little reminder of that first day… Man… He was tiny.

And look at him now!

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Yes, that was the day he wore the helmet and took the scythe to school. Good job they get him 😉

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He’s been up to the stage in assembly to accept his certificates. Hell, he actually sits through assembly. Without shouting “Zombies” any more. (*snort*) Albeit on Mrs D’s knee, and with lots of distraction should it be necessary. But he does it. It’s easy to forget how much can change in just a year.

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He now walks in to school. Holding hands. It’s a little stop/start occasionally. And sometimes he gets a little teary about leaving the comfort of home. But once he’s out in the elements and especially once he gets through that school front door, he doesn’t look over his shoulder. And that is a far cry from the small boy we used to have to drive or carry…

School has been, without a shadow of doubt in our minds, an unmitigated success. It has far exceeded our expectations (not that we had any, or at least, not that we knew quite what expectations to have, but had we had any… if that makes sense). Still, we must temper it with “We don’t know what the future holds, but….” so far so good!

Let’s have a brief look in pictures of the last little while.

We’ve had plenty of sit-down protests, when things aren’t going quite as comfortably as Teddy might have hoped, but they have become far better-natured, and far less meltdown-oriented than previously:

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In fact, some have quite clearly just been time for a little think:

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We’ve had experiments with space – “How much Ted can you fit in a small bucket?”

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I’ve had a helper making (but mostly eating) pancakes:

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We’ve had the dreaded chicken pox:

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We’ve had experiments with dealing with too much sunlight while you’re watching a film:

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We’ve discovered a deep and abiding passion for Oliver Jeffers and The Very Hungry Caterpillar (which is a godsend when it comes to having a quiet coffee in a cafe):

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We’ve had lots of coffees in lots of cafes (now doesn’t that make a change?):

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We have a new friend, though she’s a little bit too bouncy and yappy to be very autism-friendly just yet. But we’ve made quite a lot of progress with barking commands back at her 🙂

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We’ve discovered dandelion clocks:

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And walks in the woods:

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But these pictures from yesterday describe rather perfectly how far we’ve come since the initial diagnosis had us holed up in our house and afraid to go anywhere for fear of judgement and meltdown. Here we go. Sitting at a big table, in a bright and noisy cafe, eating lunch with Mum and Dad.

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Ted did lots and lots of walking. Hell, my feet were blistered! And apart from the occasional (and hilarious – much to the amusement of several passers-by) pause to put his hands on his knees, head bowed, like a little old man taking a breather, he just Tonka-trucked on.

We went to a few shops, and there were no demands or meltdowns because he wasn’t allowed ‘stuff’. He just held our hands and got on with it.

We paused for a bit of sensory downtime. When, apparently, the best course of action is to lie on the floor with mum’s jumper on your head, in the total dark, feeling the stones beneath your hand. Just for a little while. ❤

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And we visited a museum. Where we saw butterflies and beetles, reminding me of the Beetles, Bugs and Butterflies episode of Charlie and Lola that Ted so loves, but which makes him completely hyperactive…

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And a T Rex.

Who we taunted.

Just a bit:

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All through the day there were potential balloon dramas.

Have you ever noticed, pootling around town, how many damned balloons there are? EVERYWHERE?

And of course, we have had meltdowns over balloons, we have gone to enormous lengths, in the past, to bypass, distract and sneak past balloons, in order to avoid such meltdowns.

Well, yesterday, we walked past many small children with balloons, many shops with balloon displays, and Teddy said “Balloon…” somewhat wistfully, with a half-hearted attempt to go and get them. Until, in the museum, as I was taking a picture of some beetles, he put his arms firmly around a small boy’s big, green balloon.

I looked down at said little boy’s small, bewildered face, looking back up at me in rather desperate appeal, as I gently removed my fabulous son’s arms from around it and he made no fuss whatever and returned it to its rightful owner.

“He has autism.” I explained to the small boy’s parents. “And he really loves balloons.”

They smiled sweetly. No judgement. No fear. No awkwardness. I can’t tell you how refreshing it is when that happens! We had our fair share of funny looks yesterday, when Teddy suddenly charged forwards, or made unexpected sounds, or… but they are so very much like water off a duck’s back. The only tricky reaction they invoke is sadness for Ted’s future. Right now, he lives in a world where the people he has to interact with accept and love him 100% and he is a very happy and trusting little person. One day, inevitably, that trust won’t be merited. I dread that day.

Anyway! When we got to the place we were having supper, there, outside the restaurant, on sticks for anyone to help themselves, was a whole great bunch of balloons.

Can you imagine a better-deserved reward?

Don’t Judge a Book by its… >.<

You know what it’s like? The new obsession is so strong, the reliance on one single item so great, that you have to have one in reserve for when the first runs out / breaks / gets lost. And you panic slightly that they might ever discontinue them. And you’ll turn around two hours into your journey because you forgot it… Right?

Right.

Thus it is with ‘drong’, Teddy’s way of saying ‘drawing’, otherwise known as a Megasketcher. For those unfamiliar with such things, here it is:

megasketcher

So yes, Teddy has two. And they go EVERYWHERE with us, or at least one of them does. And his hands are a blur as he scribbles a picture, erases it in a flash, draws the next. Usually monsters and zombies and pumpkins. Yes, he is also (still) obsessed with Halloween.

So, last Sunday morning I went into Ted’s room. He was feverishly scribbling, rubbing out, scribbling… I sat quietly on his bed and picked up the second Drong. I drew an apple.

“What’s this Ted?”

He glanced over.

“Apple,” he said.

I wrote the word next to it, and he sounded it out as I went.

We went through the entire alphabet this way (which severely tested my artistic talent, especially when it came to x-ray!) and when we got to the end, it occurred to me: he’s been sounding all these words out. What if I don’t draw the picture first?

I wrote ‘cat’.

“Ted, what does this say?”

He glanced over again. Then back at his drawing. Then back at the word.

“Cat.”

Erm… Hang on a minute! My eyes were popping, my mouth agape.

Fluke. Must be a fluke. I’ll do another.

“What does this say, Ted?”

“Dog.”

Oh Em Gee.

“And this?”

“Egg.”

OK, I told myself, still trying to play devil’s advocate. It’s probably because it’s in alphabetical order. I’ll try another, out of sequence… I’d called his Daddy by now “Come and see this! I don’t think you’ll believe it!” I went back to the first.

“Apple”

His father stood there, open-mouthed, fish-out-of-water-ing.

“And this?”

“Elephant”

“Our baby can read?!”

I had a sudden pang of guilt. How did I not know? I haven’t ‘done’ reading with him. I read him stories, sure, but I don’t try to get him to read anything himself. His inability to really communicate left me assuming (how very very dangerous assumptions are) that he couldn’t / wasn’t able / wasn’t ready.

I NEED BOOKS was my next thought. And as if by magic, I unearthed a set I had bought long before the diagnosis and put away without much hope of introducing it in the remotely near future. Parents read the ‘story’ on the left-hand page, child reads the two- or three-letter words on the right. Perfect.  Later that day we read the first one. And he cracked it.

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Then, hot on the heels of this discovery, we were due to go on our first holiday in YEARS. Renting a cottage, taking a plane, booking a ferry… All these things fill us with dread when it comes to thinking about managing Ted through them at this stage of his life / development. So last year we paid peanuts for a little caravan, discovered on eBay, thinking we’d create a little home from home for him. We knew there was a good chance we’d be throwing it back on eBay within 24 hours of our first attempt, but… nothing ventured, nothing gained? And, months later, finally, we bit the bullet and went.

Here we are, with a new set of flash cards, practising reading in the caravan:

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And here we are, in the caravan with Drong:

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(Spot the Juno Jack Russell ear in the bottom left… She was an angel, too, and clearly very interested in the artwork)

And the second enormous piece of news for this autism family? Caravans ROCK! OK, if you stick to under 50 miles per hour, you can usually avoid that… 😉 But we’re high as kites at the success of our three-night adventure. Just as hoped the caravan (a word he now says beautifully) is a fabulous little home from home. We cooked pancakes on the burners, he slept from 7.30 pm to 9 am on the second night, which is nothing short of miraculous, he chilled with Winnie the Pooh on the little fold out tv / dvd player…. Oh hell! It was just WIN WIN WIN.

And… we visited one of the most beautiful parts of this country I have ever seen: Kielder Forest. Just check this out:

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Up Tails All

I was crossing the Tees on this bridge in Barnard Castle when I was greeted by these two.

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They didn’t seem entirely comfortable on human turf and moments after this shot they were gone.

One of the things I love about sitting by this river is the comings and goings of ducks. They always strike me as a very sociable bunch. No one really takes offence at anyone else (unless they happen to be courting the same girl), they all seem quite content to snuggle up together. And the grace with which they swoop down onto the water, or take off from almost seated… !

I paused to breathe in the view.

And then I saw him.

He was pootling, all by himself, going round and round, leaving little trails in the scum on the pool by the river where the water collects. Where there are no currents. Where it’s safe.

He was about the size of an apricot.

An entirely fluffy apricot.

And he was completely alone.

My mission was to go and sit by the river, to read something on my Kindle (a book on autism, actually), to spend an hour or two doing something I haven’t been able to do for an awfully long time: to just be.

But I had a new mission: I had to check he was ok.

I clambered down to the rocks below the bridge where all the ducks were basking in the sun. I kept well back so as not to disturb their rest, and just as I approached the pool, one of them quacked, just once, in alarm. Out from the brush on the side of the river shot mummy duck with two teeny siblings. She scooped up her babe and they stuck together for a swim out on the river.

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I sat.

After a while, they decided I wasn’t a threat and mummy duck stopped warning them they were getting too close.

It was bliss. They are the funniest little creatures. Adult ducks are much better at disguising how hard they are working beneath the surface to stay in one place and avoid being carried off by the current. Ducklings, not so much! Their tiny bodies bob quickly from side to side with the exertion and every so often, when they’ve been swept a little too far in spite of their paddling, they put on a burst of speed and almost run along the top of the water to catch up.

I could have stayed there for hours. I kind of did.

And as I sat I relaxed and allowed my mind to drift.

That little duckling? The intrepid one who kept swimming off, out of the pool, who bobbed and swayed and jiggled with the effort out on the river?

That’s my Ted.

While his siblings pootle around the pond without too much effort, there he is, battling the currents, just to keep up. For every paddle they take, Ted has to take three or four.

Just to keep up.

And he hasn’t yet. He hasn’t caught up.

But bloody hell, he’s trying ❤

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Progress

When picking Teddy up yesterday lunchtime, his teacher asked if I could stay on this morning for a meeting about his progress.
It’s always a bit nerve-wracking ‘meeting teacher’.

And I must have looked a bit anxious as this lovely lady reassured me, “It’s all good!”

“We want him to stay till afternoon break from Monday,” she said “How do you feel about that?”

“Well, that’s fine with me. For me, an awful lot of it is about your confidence. If you feel he’s okay to stay, and you can handle it, then that’s great!”

She then proceeded to list for me all the ways in which his progress has blown their minds, taking his autism and his age into account and especially since he only started in September.

Academically, Ted’s all there. His vocabulary is extensive, his knowledge astonishing, but he can’t communicate any of it to you meaningfully, other than the very simple “I want a drink, please Mummy / Mrs Dodd / Daddy”.

We’re hoping that the one-way information stream will eventually, gradually become two-way as more methods of expressing himself are teased out of him one by one. Perhaps, one day, it’ll be like flicking a switch.
Because it’s all in there.

Yesterday, for the first time, he brushed his own teeth. He sat on the chair in the bathroom in his school uniform, jaws clenched, teeth bared, studiously and jerkily going over the front gnashers again and again, fully focused on his task.

I melted.
I praised.
I called all the remaining family members not yet departed for school to come and see.
We all told him how wonderful it was.

This morning, he took off his pyjamas all by himself. It’s a slow process. It requires time, which we often don’t have with five needing ferrying / shooing / cajoling off to their respective establishments of a morning. So I’ve been stealing a five-minute march here and there to allow for a little more time for this.

So.
Pyjama bottoms came off. Slowly. Inching down the chunky thighs, snagging on legs slightly too far apart, first one foot, then the other.

“Well done! Right. Now your top? Can you take your top off?”

A solid little torso appeared below a rucked-up top as one arm was painstakingly removed from its sleeve. The other followed and then he tried to pull the top over his head. Forwards. So that the widest part of his head was first through. Possibly the trickiest method. But he giggled as he got stuck. And wriggled and squirmed it over his head.

These things (I know I’m repeating myself) are so small. But they’re enormous for him. Social and independent skills need so much more dedication for our little Ted.

“He sat on the carpet for the whole story yesterday,” his teacher told me. “Another little girl’s knee was against his. He didn’t even flinch. And he lets the girls take his hand to lead him out to the yard at playtime. They love him.”

“Stop it.” I said “I’ll cry.”

“Crying’s good,” she said gently. “It’s so easy to forget how far he’s come.”

See, it’s not the academic stuff. It’s not even the communication. It’s the social stuff that is his biggest challenge.

“He loves the pirate ship at the moment. He can’t get enough of it. And he’ll play in that small space, right up close with the other boys. And they’re all being quite active and enthusiastic. And he’s fine.”

“And at registration,” (I was lapping this up – I’m so grateful to her for taking the time to tell me) “we used to have to say ‘Good morning Teddy’ lots of times before he’d respond. Now, he says ‘Good morning’ back every single time.”

Then, she brought out the big guns.

“We have a trip in two weeks. We’d like to take Teddy. What do you think?”

*Gulp*

His first trip.

He never went on any of the nursery trips because… well… it just wouldn’t have been manageable.

But now. Now we go out as a family and he has his dinosaur reins on and things may take a little longer than they should, and we may have to manoeuvre through the odd meltdown, take a little time-out in a shop doorway to refocus:

pitstop but we get there. This half-term we managed to eat in a restaurant twice. No highchair, no meltdowns, no difficulty at all.

It is easy to forget.

“He would have two people dedicated to him at all times. We have tried to anticipate everything that might be a difficulty. It might be difficult just getting on the bus! But the Head will have his car there so if it was necessary, he could always be brought back.”

I’m going to give her his dinosaur reins which are, in fact, a little backpack the perfect size to carry his packed lunch.

And he’s going to go.

I feel thoroughly blessed at the levels of dedication and care here.

And I will stop feeling tearful very soon ❤

A fresh perspective

Teddy is a sensory seeker.

If it’s blowing through his hair, pushing on his limbs, tickling his tummy, he loves it. He lives life at full pelt and rarely sits until thoroughly exhausted or unless distracted by something more sedentary, like a favourite film or his Megasketcher.

This season is perfect for him. He canters to school, oblivious of the danger underfoot, careening over the ice, giggling his little head off. He shakes off his hat to better feel the air on his scalp as he goes.

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He stomped through the mud at Auckland Park yesterday afternoon, as we all went for a stroll to walk off lunch.

Auckland-Park

And today. Today the walk back from school took approximately 5 times as long as it should have. That ice that the rest of us go out of our way to avoid? Not Ted. He had to stop and pick it up.

And examine it.

And lick it (ugh).

And break it in his fingers into smaller and smaller pieces.

Until he discovered the pure joy of getting a particularly large piece, lifting it high and dashing it onto the pavement, to squeal with delight as it shattered into lots of tiny pieces.

Over and over and over again.

With undiminished happiness.

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I was talking to lovely Lesley in the post office some time later. We were discussing the choices: get frustrated – I have things to do at home, this is taking too long, I’m cold, let’s go, hurry up… Or join him here. Now. Where his little gloved fingers struggle to pick up those sheets of ice, pick them up for him. Maybe advance a few paces whilst holding it out to him in order to get at least a little closer to home… 😉 And join in his delight.

“Daddy, Daddy! Let’s take this one home and show Daddy, Ted, shall we?”

We open the door and Ted charges in. Daddy joins us there.

“Out here, Ted. Come out here and show Daddy?”

Teddy comes back out and I hand him the sheet of ice. He takes it and

*CRASH*

launches it in through the open front door onto the hall floor.

Well. He did show him!

Life with Ted narrows the focus. Then narrows it a bit more. Then narrows it further still, until the smallest actions yield the greatest joy.