25: Perspective

I’m shattered.

It’s not an uncommon cry for a parent, especially where very young children, or autism, are involved. But Teddy usually sleeps ok. He doesn’t fall asleep terribly easily, and sleeping late is but a dim and distant memory, but he usually sleeps fairly solidly for a good few hours.

Except when he’s poorly. And he has a horrible cough at the moment, chesty and rattly and horrible. And only Mummy will do.

So, it wakes him up, and he wants me, and I go in and climb in to his bed and cuddle him back to sleep, and crawl blearily back into my own bed when he’s finally dropped off again. And this goes on throughout the night until the last time he wakes up, his brain is simply too awake to want to go back to sleep, and we have The Gruffalo, or The Gruffalo’s Child, at full volume, snippets and phrases and adorable mispronunciations… and (oh, I can’t tell you how happy this makes me) for the first time in more than two years, we have snuggles and whole actual stories, without interruptions or snatching or losing interest or taking over, just snuggled-up-stories… that mean what little sleep we’ve achieved is now, officially, it.

I stood in the kitchen this morning, with my arms around Teddy’s Daddy, resting my knackered old head on his shoulder:

“I can’t wait until he’s a bit more independent, until he can get himself back to sleep once he’s awake, until…” I suddenly realised that this wasn’t actually true: “But… I know that when we get there, I’ll really miss this. I’ll miss his wanting and needing his Mummy…”

I speak from experience. Once upon a time there were these:

And they’re already these:

Once upon a time there was this:

And here he is today, walking home from school:

(complete with the T.O.C. – the Tongue Of Concentration 😀 )

And it has all gone so fast. I mean, so fast.

Blink-and-you’ll-miss-it fast.

That first little person I held in my arms, who made the world disappear and planted my heart firmly outside my body forever more, now towers over me with visions of leaving home looming already too large…

And although it’s right and good and proper, and I rejoice at their progress and their triumphs and their quirks and idiosyncracies, the lithographs of those little people will always toddle around the periphery of my vision.

So today, I am grateful that my little Ted needs me, that when he’s poorly, or awake in the dark, or scared, he wants me.

And I’ll have another coffee ❤

Post 24: Hope for those that follow…

 

 

 

 

Once upon a time, I had a perfect baby.

He had many names: Little smiley moley mole, Hot Chollops, Teddley von Weddley, TiddlyPush. Many many names. And all was well with the world. OK, his eyes were a little bit wobbly, and his tummy never seemed to be very happy, but he was progressing as normal. We went out and about with him. We sat in cafes and he smashed cake whilst very obligingly making all the sounds the animals make at our request. We lay in bed on weekend mornings reading stories. Little Bean’s Friend was one of his favourites. We read it again and again and he giggled at “Right! That is it!”

And then, one day, he wasn’t. He wasn’t making those noises any more. He wasn’t interested in books any more. He wasn’t really making eye contact any more. All the things he was once doing, he had stopped doing. And all the targets he was supposed to be reaching had become a pipe dream.

And we entered the world of the autism parents, the autism challenges, had to relearn what it means to be a mummy and a daddy under entirely different circumstances.

And it was all new.

About a year ago, I had such a difficult experience going for a routine dental check-up with Teddy that I vowed I’d never do it alone again. Then, six months ago, we took him together and it was awful. We dragged him away kicking and screaming and the lovely dentist hadn’t even got a look at his gnashers.

 

But today, I’m buzzing.

Woody and Bullseye accompanied us, along with Teddy’s favourite “drong” (say ‘drawing’ really fast and that’s what it sounds like) – his trusty Megasketcher on which he would happily draw for hours on end. Because today, we had a dental appointment.

Teddy sat drawing beautifully while Daddy went in. And stayed happily with Daddy while I went in. And then we all sucked in our breath and braced ourselves. And took him in.

He sat up on her chair with his ‘drong’ on his lap. Our lovely dentist and I crouched by him and smiled at him and asked him if we could see his teeth.

“Teef!” he said, and bared his front teeth for her.

“That’s lovely. Can you look up and say ‘Ah’?”

We all looked up, opened our mouths wide, and said ‘Ah’.

“Can I count your teeth?”

She counted all the way to twenty.

“They look lovely. See you in six months.”

Deservedly, in the above photograph, Teddy is wearing his sticker.

And tonight, before his bath, Teddy climbed onto his bed with me and sat between my legs.

And for the first time in more than two years, we read Little Bean’s Friend.

Cover to cover.

For anyone following behind us on this journey, I just want to say this: take heart. What you once had, you may well have again, and what once seemed impossible may be just around the corner.

Tonight, I am quite tearfully grateful. ❤

Post 23: Progress

OK. First of all, you’ll have noticed that I have changed from days to posts 🙂 It is increasingly impractical, with the run-up to Christmas, running my own business, having five children and the youngest with autism, to find the time to write each day. But I’ll do my best.

We have just come home from our very first parents’ evening for Teddy.

It was wonderful. Teddy’s teacher, who we don’t speak to very often, since our primary point of contact is Mrs D, his one-to-one support, has been blown away by him. She told us this evening that she was expecting his transition to primary school to be far more traumatic than it has been, for everyone not just him. She showed us where he sits, described the progress he is making as he learns a little more each day what is expected of him, explained that he is taking on board the necessity to do something when he is asked to – largely through having to out-stubborn him 😀 , told us that he is participating in class activities, sitting for 20-25 minutes through school assemblies, fetching his own coat and bag from his peg… She said that everything he is able to access he is accessing and she was massively positive, affirming, encouraging and hopeful. Everything we could possibly hope for.

And a funny thing has been happening.

The other day, I got Teddy in the car. His Daddy nipped around the side of the house to get the bin out for the binmen. Usually, he gets in with us. This day, he just had to do this little job first.

I looked at Teddy.

He was blinking back tears.

Taking it on the chin.

Daddy’s not coming, and I can cope. His little chin was resolute, lips quivering, as the tears began to roll.

He is trying to grow up.

Tonight, as I put him to bed, I climbed in with him as the pattern has become. I whispered “I love you.”

“No!” he said firmly.

“I do. I love you.”

“No!” he repeated, and grabbed my face to pull me in to him, his arm snaking around my neck.

I realised that he thought I was going to leave him, as I was once able to without drama. You remember? I used to say “Night night baby. Sleep well. See you in the morning. I love you”?

“It’s okay.” I reassured him. “It’s okay. I love you.”

He became resolute again. “Good night, Mummy,” he said, and pushed me away.

He had decided that this was expected of him and it was all right.

I got up and left the room.

Within minutes, it had got too much and he was crying “No, Mummy!”

I went back in, climbed into his bed, mopped up his tears and reassured him again. “It’s okay, baby. I’m here. Mummy’s here.”

He fell asleep in my arms very quickly.

It’s great that he is beginning to understand what is expected of him. And it’s great that he is trying to grow up.

But, baby, there’s no rush ❤

Day 22: The Comedian

He doesn’t know it, but he is.

I’ve struggled a bit today. We all do, sometimes. And some times more than others.

But there is one thing that is a dead cert. Even if, at teatime, all he really wanted to do was throw his big, flashing bouncy ball into his bowl of bolognese. Even if this week has been a bit of a bunfight, trying to persuade him to go to school. Even if his tummy isn’t very happy at the moment, and that makes his behaviour a little less predictable. Even if a new regime of very limited iPad time means more meltdowns. You know, it also means more connection, even if that connection is difficult at times.

If you want full and complete eye contact with Ted, you need only ask: “Would you like…” and you have his undivided attention. He’s hoping you’re going to mention something with chocolate on or in it (plain, of course – dairy-free) but a banana makes him just as happy, and all the time you draw it out, there he is, his big brown eyes gazing right into yours. It’s so rare it takes your breath away.

We’re trying to instil a little more independence in him, too. He’s four and can take his clothes off, though usually when you least want him to 🙂 and he doesn’t really, can’t really, dress himself. If you want him to eat a meal today, he’ll need much cajoling and assistance so as not to run off and engage in something else.

So at bathtime, I put his flannel in the soapy water, wrung it out and held it up to him.

“Teddy? Can you wash your face?”

He held his hands up to take it, paused – clearly thinking better of it – put them back into the water, craned his neck and inched his face forward into the cloth.

Every day, comic relief.

Day 21: Laughter

The morning routine:

Teddy calls me from his bedroom. Then sings nursery rhymes, recites chunks of his favourite films or hollers gobbledigook until I drag my weary self from bed to see him.

I go into his room and snatch him up for the first cuddle of the day. He’s very snuggly at this time of the morning.

Me: “Good morning!”
Ted: “Good morning!”
Me: “Let’s go and find…”
Ted: “DADDY!”

But this morning:

In I pottered, scooped him up, squeezed him and gave him a good morning kiss.

Me: “Good….”
Ted (squinting with concentration, cogs whirring): “BOY!”

❤

Day 20: More Rough and Smooth

This is how Ted rolls, during down time at home. He has nursery rhymes or YouTube Minecraft videos playing on the iPad whilst drawing on his Megasketcher (the best piece of kit we have ever bought him). He draws fluidly, almost carelessly, and his pictures are delightful observations of his current obsession. Until recently, it was zombies as he was totally enthralled by the game Plants vs Zombies. Before that, of course, it was Mr Potato Head. Now, it’s pumpkins and ghosts. I suspect Halloween will last for Ted until at least Christmas. Then Christmas will take over until the next family birthday. He can make a holiday last!

This morning was awful. I think the routine of every day going to school is beginning to register on his little psyche with some alarm. He was becoming more and more resistant last week and this morning, it was flat refusal. He was kicking and flailing as we tried to get shoes and socks on. And there was no way we were getting his coat on. We had planned to walk to school, but that wasn’t going to happen, and it took every ounce of cajoling, reassuring and persuasion to finally bundle him into the car.

The thing is, autism isn’t the only challenge Teddy faces here. He’s young. He was only four just over two months ago. And he will still be four when the school year ends. On top of the developmental delay caused by the autism. I despair of this system. He couldn’t stay at nursery because he wouldn’t get the funding, and they were reluctant to keep him because he’s a big boy for his age. (And that doesn’t help him either!) We were of course completely sympathetic to their position: imagine all those teenies coming in to be greeted with a very big livewire… Because although he is generally very gentle and affectionate, when he kicks off you can get a boot in the head.

It’s very difficult.

And I don’t usually write about the very difficult, because we like to focus on the positives and the milestones and the breakthroughs.

Last week at school didn’t go terribly well. He was a bit off the wall. He wasn’t as cooperative as he has been. He didn’t sit through assembly, but stood up, started walking around talking over everyone and had to be taken out. We had ‘little chats’ on collecting him. His Halloween obsession hit a peak.

And that wasn’t just at school:

*Early morning at home*
Me: “Teddy? Would you like some toast?”
Teddy: “I want Pumpkin Pie, please MUMMY!”

He’s never had pumpkin pie (it isn’t an English tradition – at least as far as my life has dictated) but is endlessly insistent just now that that is what he wants. To the extent that I’m considering checking out a wheat-free, dairy-free, salicylate-free version for him to try. Trouble is, I suspect it would be rejected after the first mouthful!

So. This morning. Urgh.

But you know? When we got to school, after we had addressed these various concerns with the lovely Mrs D, he gave us each a kiss, took her hand and walked in cheerfully, without a backwards glance.

And for that, I am grateful.

A bit strung out 😉

But grateful.

Day 19: Vive la difference!

(Give or take a day or two, thanks to ongoing technical… shenanigans)

I read these two simple lines yesterday morning:

“Nurturing without possessing
Is the Great Way of Tao.”

Nurturing without possessing.

It’s too easy to be led astray. “My” children. “My” daughter. “My” son. “My”…

And while they are tiny, vulnerable, defenceless, cannot communicate their ideas or preferences, it is easy to perpetuate the myth, however unspoken, that they belong to us in some way, that they are extensions of who we are.

But as life moves on and they grow in size, in independence, in spirit and in difference, as they individuate, I marvel at how little I know who they really are, at what they show me, at the promise. At how much, every day, they surprise me.

I am happy to be an observer here. I am thrilled and delighted to watch these  souls emerge. I am honoured to be their custodian for as long as they want my guidance. And I watch with joy as their wings unfurl.

And finally, this: I will embrace their ability to make their own mistakes and learn from them, their own decisions and grow from them, to forge their own lives and live them.

 

Day 18: Time

I do realise there are a few days missing. Half-term and faulty computers have scuppered my well-laid plans, though to look on the bright side, at this rate 100 days of happy will span a whole year. A whole happy year. And that can’t be a bad thing, right?

So.

Time.

Man.

It flies, doesn’t it?

My friend’s son posted a photograph online tonight of him and my eldest son in their first years at primary school. They’re fourteen now. Where did that go?!

If you stop and think about it, it makes you more determined to stop and think about it. I mean, stop. And not let it fly past unnoticed. Not so much, anyway. If you can possibly help it.

Teddy’s bedtime routine is laborious. He doesn’t go to sleep quickly and easily unless it’s really late. And he used to go to bed alone:

Me: Night night baby.
Ted: Night night baby.
Me: Sleep well.
Ted: Sleep well.
Me: See you in the morning!
Ted: See you in the morning.
Me: I love you.
Ted: I love you.

And I’d leave. And he’d go to sleep. With no help. Once upon a time.

Then he got ill. He had a horrible bug that lasted a good week. And he wouldn’t go to sleep without me, or one of us, there. And hasn’t since.

And it means that sometimes you’re there for 10 minutes while he drops off. And sometimes it’s more like 40. And you’re tired yourself. And longing for a bit of child-free time at the end of a long day. You want to go downstairs, have some supper, some adult conversation, to relax a bit. In peace.

And then…

And then tonight happens.

It’s late. I’m tired. Half-term is finally over. Uniforms are clean and ready for tomorrow. Homework is done. Children are bathed and tucked up in bed.

I’m lying next to him, my whole body tensed and waiting to leave. I’m listening for the tell-tale signs: the slowing and deepening of the breaths, the twitching of the little limbs…

I think he’s there. I slowly begin to extricate myself.

And his chubby little arms snake around my neck, pull me back into his sleepy, soap-smelling warm embrace.

And it stops me in my tracks.

How much longer will he want this? Do I have years more of this? Or just months. Or weeks. Or days…?

Time.

It goes so fast.

Enjoy each embrace.

Day 17: Focus

A lovely friend of mine has just received the official diagnosis. Her little boy has autism. Inevitably, it takes you back.

We were chatting about it, Teddy’s daddy and I, from our vantage point a couple of years after receiving the verdict on our little chap. The thing is, no matter how much you already ‘know’ it, no matter how many different wheels you have already set in motion, it still socks you in the solar plexus. It still feels like a violent and unwelcome invasion of the safety of your inner sanctum; that place where you hold all the love and fierce protectiveness of your offspring sacrosanct. How dare it invade you here? This place is supposed to be inviolable.

But it isn’t.

“I think I’m more or less acclimatised now,” his daddy said to me.

“Me, too.” I replied. “But… there are moments. I have moments.”

It isn’t easy to discuss. We are accustomed to looking on the bright side, finding the positives, celebrating the triumphs, lauding the milestones. We have, for the most part, readjusted our expectations in terms of the map of his life. It isn’t as clear as it may be for his brothers.

But sometimes, just sometimes, I look at this perfect babe of mine, at his huge round brown eyes, his chubby cheeks and perfect lips, his tousled hair, which always looks a bit rough since he only ever allows me to chop a little bit, after the bath, using his daddy’s beard scissors… And I think “What if…?”

What if is a dangerous game, and one I can’t really afford to play. But it is enticing, too. What if this perfect little person, this happy, affectionate, clever little person had all that and was able to connect with me too? What if we could have free and easy eye contact, and conversation? And then my heart catches in my throat and I realise I have sailed too close to the wind.

But, you know? That doesn’t happen often. And when it does, there is a strange residue left behind; a kind of guilty layer of disloyalty.

Because Teddy is Teddy.

And Teddy is happy.

And Teddy is affectionate.

And Teddy is in his own way, at his own pace, finding his way in this world.

And those baby steps, harder won, are all the more poignant and powerful.

And none of us, not a single one, has that magic crystal ball, not for any of our lives. Some of the journeys we believe to have the most predictable paths can send us hurtling off in dizzying directions when we least expect it. (And that hasn’t a thing to do with autism!)

So, day 17 (give or take a day or two due to unforeseen technical hitches 😉 ) – focus. And refocus. And then, for good measure, refocus again.

And just when you think you have the picture as clear as it could possibly be, close your eyes and open them again. Because there is always something else to see ❤

Day 16: Daddy

I collected Teddy on my own from school at lunchtime today.

Something wasn’t quite right.

Teddy stood on tiptoes to see over the box on the desk in reception. He was looking for something.

And he couldn’t find it.

“Let’s find Daddy…” he said, looking straight at me. “Bye, Mrs D!” and he was heading for the door.

Brancaster Beach

Big, soft puzzles

Teddy.
Even when he’s poorly, his Daddy can make him smile.

For today’s “100 Days of Happy”, I don’t believe words are necessary ❤