The heart of it

Oh my boy.

I managed to make some inroads into Robbie’s school aversion.

Robbie has loved school since he started in Reception. He did start a bit late due to the fight we had getting him in, but after his misery at nursery, he was entranced by the structure and environment of his school. Every day was exciting for him.

Since he’s gone back in September, we’ve had a lot of refusal. Not aggressive… More depressed and lethargic.

Tonight, Robbie laid on his front and sobbed into his pillow whilst telling me how he missed all his teachers from last year.

When your child goes to school – particularly primary – there is always an element of you ‘handing over emotionally’ to the teachers. You want them to care specifically for your child. You want them to see the vibrant little person that they are, and nurture that spark. You want them to care for your child like you would.

When your child attends a special needs school, that feeling intensifies. When your child has vulnerabilities, or are a proficient escapologist, or are lonely… You come to rely on those staff, probably much more than you should.

They are truly there for every milestone your child achieves. I couldn’t walk Robbie along the street safely until his school worked with us both. I owe them so much. I’m not surprised he’s grieving for them.

He put himself to bed on the couch. He may well have done this so that he was in my evening space, forcing a confrontation. There’s always an element of guesswork with him. He is a deeply complex character, with overtones of frightening intelligence, drenched in a sauce of Titanic facts.

He also told me twice yesterday that I couldn’t “keep” him and that he was going to move in with Nathan… I’ve sounded out Nathan’s mum and she’s confident that she has enough children. Sorry Robbie.

Wish me luck

Percentages

This isn’t a funny one.

If you’re here for a funny one, I wouldn’t bother. Go and find some memes.

The reasons are two-fold.

1 – this week has been stressful for Robbie… Therefore, also for myself.

2 – neither of my kids have done anything funny this week.

I’ve spoken to them about this. I think it’s only fair that we are all very clear on what we expect from each other as family members. I didn’t have kids for all the ‘nurturing’… I wanted a constant source of entertainment.

At the beginning of the week, a kid in a different class to Robbie took his glasses and hit him at playtime. Something similar happened the next day.

Before you worry (lovingly!) it is in hand and being dealt with. I don’t think it was personally aimed at Robbie – and remember, he does attend a special needs school. Things like this will happen.

But as ever, with Robbie… There is a reaction.

It took him until Thursday morning, when he wouldn’t get out of bed. Normally when he wakes up, he bounds or sneaks out of bed looking to slake his unquenchable thirst for technology.

I went in to rouse him and he lay there staring into space. The more I tried to encourage him to leave the bed, the more he burrowed. He looked downright depressed.

Robbie has this thing of being unable to always identify what’s actually upsetting him. So, when he descended the stairs, he informed me, in tears, that he “hated” me “0.02%” for making him always log off the PC.

“Robbie, do you mean when I generally tell you that you have to come off, in order to continue living your life?”

“… Yes.”

Robbie… in the place he hates me the least

There was more to this, but I let him stay off with me on Thursday.

It felt nice, like an illicit cosy day together. I printed him off a worksheet to practice his letter formation and felt like a good mummy, looking after my child’s mental health. Putting his emotional needs above the constraints and expectations of society.

I should have known it would bite me in the arse.

Friday… Refusal.

There were threats, pleading, bribery… From him.

After some telephone assistance from his teacher, he went to school in his own clothes, “for comfort Mummy!”

He now seems to be back on an even keel emotionally, but we will see if anything else happens.

So there you have it. A common factor of Autism is the struggle to identify one’s own feelings. As a parent, if your child can’t tell you what’s wrong, you have to ‘play detective’ and try to work it out for yourself.

We are all still learning.

I will learn with you Robbie.

Friendship

Robbie has a best friend.

We had his school friend Nathan to stay straight from school on Friday evening. This was our second sleepover.

Nathan is also autistic and he is a very kind and thoughtful little boy. Listening to the conversations between him and Robbie are an absolute joy.

In the car, Nathan recounted how he and Robbie’s friendship began.

“I remember when I saw Robbie and I wanted to be his friend and now we are best friends forever! You’re always in my thoughts Robbie.”

I can’t cope listening to these exchanges. It’s hard to drive whilst your eyes are blinding with internal tears.

They were having a discussion about how the world was made and they decided that it was created by God. This isn’t something I particularly wanted to go into with two little kids – particularly one who isn’t mine – so I tried to distract them from creation and asked what God looked like.

Nathan replied, “he has a yellow thing around his head” (I GENUINELY thought he was referring to a turban for a moment) “is in white and wears flip flops. Nothing else.”

Robbie struggles to think outside of his own wants and needs – and his friendship with Nathan teaches him to think of others. Nathan wanted them to have a “best friend bath” together, but Robbie didn’t want a bath. Reminding Robbie that Nathan was the guest resolved the situation immediately, as he cares about his friend’s happiness.

In the morning, Nathan wanted Rice Krispies for breakfast. I dutifully complied and he groused that I hadn’t made them soggy enough for him. I dunked them in the milk and he then complained that they were too soggy.

Robbie looked up from his ipad, blinked in an owl-like manner and said “Dudette, how dare you make my best friend’s breakfast too soggy?”

He’s got your back Nate.

Their time together was rounded off with Robbie asking if Nathan could move in with us. I’ve broached the subject to his mum but for some reason she seems reluctant to hand him over.

Soon, Nathan.

Presents

“Look in my bag, I’ve got a present for you!”

Robbie has just come out of school, sing-songing at me happily.

I open his bag, imagining what will be inside. A picture? Some of his work that he’s brought home to show me?

Nah. I pull out a clear plastic wrapper from his Mr Kipling lunchtime cake.

“Robbie? This is rubbish from your lunch box.”

“Don’t call him rubbish, Dudette. This is Trash Boat.”

And just like that, Trash Boat was born.

Trash Boat enjoys quiet evenings and floating idly in a dimly lit bath, all the while being verbally caressed with whispers from his all-powerful creator.

“Be careful Trash Boat. Don’t hit that iceberg. I don’t want you to sink like the RMS Titanic.”

Is this a glimpse of my Christmas presents yet to come? Am I living out a warped, recycling-focused version of The Christmas Carol?

Last night, Robbie came out from school clutching an orange shoe box. Apparently, he was taken with it and wanted to bring it home.

“I’m going to call him Boxy. He will live with us in our house.”

Later on, I hear Robbie (scarily) chuckle and say to Boxy, “Boxy, I’ll never forget about you!”

On top of everything else that caring for two children entails, I have suddenly become responsible for the welfare and happiness of an empty shoe box.

PS – I just checked on Robbie in bed, he is snuggled up with Boxy under the covers with him.

Someone, save me!

Observations

From a young age, Robbie has liked to observe.

At nursery, he would take himself away from the group and watch his peers. He did this silently.

We miss those days.

As he ages, Robbie has begun to verbalise his observations publicy, and often loudly.

Last night, we went to a Disability Swimming Session at a local swimming baths. It is a wonderful resource, and one that’s not widely known. A great, if slightly frantic, time was had by all. As we walked to the changing rooms, we were (respectfully) trapped behind a lady walking in front of us.

Robbie loudly and clearly ‘observed’, “what a heavy Grandma!”

We are delighted that Robbie’s speech is becoming so eloquent.

As we left his school the other day, we walked past a mum wearing a niqab. Robbie ‘observed’, “I think that lady is from China.”

(I have this compulsion where I am forced to see these exchanges through. I can’t bring myself to shush him, so I freestyle and see where it goes. I try to educate on the spot.)

“Why do you think that lady is from China, Robbie?”

“Because she is dressed SOOO STRANGELY!”

Bugger.

One of the many qualities that I LOVE about this kid is his observational skills. He says things without spite and he is completely unaware of agenda.

We, as of yet, haven’t discussed race with Robbie. We very much like him seeing the world and experiencing people through his own eyes, rather than the blinkers and stereotypes of society. If you ask Robbie what colour his skin is, he will tell you it is “peach.”

This leads us to our final ‘observation’ for today.

Whilst in Specsavers with his dad, Robbie was sitting on a chair. An Unsuspecting Man came and sat on the other side of where Robbie was. Robbie glanced at him, and moved to his dad’s lap.

He leaned in and whispered to his dad “why is that guy’s face brown?”

This is an odd one for Robbie – he has always mixed with children and people of all different cultures – I can only assume that it just dawned on him that this man looked different to him.

His dad explained, “people have all different colour skin Robbie. We’re just born like that.” Robbie listened, and said “oh, right!”

Unsuspecting Man goes in. Has appointment. Comes back out, thinking all is right in his world. Ready to rejoin the high street and continue his day.

Robbie jumps up from his seat, eyes shining as bright as two pennies, (inexplicably) thrilled, waves and points, “it’s him, hi Brown Guy! “HI BROWN GUY!”

Silence. Robbie’s outburst acted as a pistol shot. Never has a store on a Saturday morning been so quiet.

His dad crossed his fingers, closed his eyes, and prayed for the gods to smite him. Alas, no, he had to deal with this…

“I’m so sorry, he’s never said anything like this before!”

The liar.

First Week Back

I see water.

The drought has ended.

We are going back to school.

I say we, I’m not. Robbie is. But I am going back to “no, you can’t play PC before school” and “you can do/have/sacrifice anything you want AFTER school”.

Don’t misunderstand me – I adore having him at home with me. However, there are only so many ‘fun’ activities that both he and I can stomach. The house begins to resemble a battleground, littered with the detrius of our patience and goodwill.

Robbie attends a fantastic SEN school, and there are small classes with a high staff ratio. I can’t speak highly enough of it. All kids should have this ratio of staff to teachers – special needs or not.

Monday – new teacher, mostly new class. A lot of his old classmates have come up with him, so he is pretty happy. He has the same playmates to wax lyrical about the Titanic with.

Tuesday – Robbie came out in a foul mood because his teachers had tried to make him eat the marginally healthier part of his packed lunch before the chocolate. I know, I know. He is very unreasonable at times. Sorry teachers. He’s your problem now. I’ve done my time until half term.

On Wednesday, he came home with a reading book in his bag. We haven’t had a reading book sent home before, this was another parental box almost ticked! I responsibly caged Faye in her cot and handed her the monstrous, light-up unicorn pillow.

I did used to give her books to read, but she kept eating the spine of them and now she has to be supervised.

So now she gets a padded, colour-changing light.

Robbie and I got in his bed, and I took a moment to savour this. Ahhh, the shared experience we were about to enjoy! The gold star of parenting – the nightly reading book.

Our eyes alight with anticipation… We started to read….

Silence.

The book in Robbie’s book bag was very simplistic for his reading level.

He stared at it, silently.

“Robbie? Shall we read the book?”

Silence.

“Robbie? What’s wrong?” (I could see what was wrong, I don’t know why I asked this).

He turned to me with a cold fury, and said, “I’m not reading that book. It’s too short and too easy. It’s just a bunch of pages. I hate that book. I want to sell it.”

I agonised about what to write in the reading journal. Whatever I prepared in my head sounded rude… So I did what any reasonable parent would do… I let the 6 year old take the blame.

I copied out what Robbie said.

The next evening, I fearfully opened his bag.

His teachers (thankfully!) had taken on board his (slightly threatening) message. The new reading book was much more “appropriate” for him (his words). God help us.

There you have it. The threat of book trafficking was enough. His demands had been met. The day had been saved.

It’s said not to give in to terrorism… But in this case, I’m glad.

We’ve now got into a pattern of reading his school reading book in the car

Faye

Faye is unlike any 1 year old I’ve encountered before.

She is wild, untamed, unfettered, sometimes loving, all-times determined. She is my electric baby.

Faye’s tantrums are unreal. She throws things, tips things over. She tries to pull her high chair ontop of herself so that she can then cry about it. All of this – with not a single tear in sight. She is terrifying.

This photo is not a true representation of Faye’s personality. It is a photo of lies.

I have never met such a vibrant and forceful individual. She both fascinates and scares me.

I attempted a baby dance class with her on Monday evening. She was the youngest there, and more than happy to show off her dance moves that she’s learned from Word Party on Netflix. When the session started, the warm-up was too slow for her. I could hear the ‘moan’ building. I watched her beady eyes scout the room looking for devilment. It showed itself by her completely ignoring the session, running around, grabbing the floor mats and throwing them, as the rest of the class studiously ignored her behaviour. I had to remove her. Not from my life… Just from the group. We will try again next week.

Robbie’s relationship with Faye is complex. He is frequently irritated by her attempts to engage with him, however, if someone else becomes irritated with her, he is quick to tell them off.

I have caught sweet moments between them. As ever, Robbie doesn’t like people knowing how he thinks or feels about a situation, so I catch him off guard ruffling her hair, or cuddling her when she gets upset. This morning, she hurt her hand, and I heard him quietly ask, “Faye, are you ok?”

On the other hand, on the way home today, Robbie rode his scooter and jumped off of it, sending it straight into the pram… With Faye trapped inside. “I just wanted it to crash.” Great.

I’m trying to teach Robbie the language of talking to Faye. If he is in a receptive mood, I will walk Robbie through how to best engage with Faye in a certain situation. He is starting to draw on this.

Faye ADORES her big brother. Today, she is wearing his Sad Creeper top (which he allowed!) and she is desperate to be friends with him. It is both beautiful and heart-breaking.

Faye at her first dance class, before the possession took over

Threads

Robbie making some “crazy poses for you to take a picture of!”

After asking for “a few more weeks off”, Robbie eventually accepted his fate and got out of bed this morning. The key to tricky school mornings is to sweep him along in the routine, bit by bit, so that by the time he realises what’s happening, he has already come to terms with the fact that he’s going in.

I bought him this gorgeous book called “Threads” by Torill Kove. I highly recommend it! It’s about how we are all linked with threads of love as we move through life.

We read it for the first time yesterday, and Robbie ran to the window to look outside and “see the threads.”

This morning, Robbie sat and read the book to himself. I asked, “Robbie, what are the threads?” He said “they are how we are all connected through love. I’m connected to you and Daddy.”

“Erm, what about Faye?”

“Only when she’s good. When she’s bad, the thread bounds off through the cosmos.”

Autistic Brutality

Robbie is blunt.  To me, it’s glorious.

He never means to be hurtful.  One of the many wondrous things about Robbie and his mind, is that there is never any hidden malice behind his words. 

He is the best person to ask for an honest opinion.  For example, “Robbie, how does this dress look?”

“Nice!  But also 1% ugly.”

…. “Good enough.”

As long as you prepare yourself for the honest answer, your feelings won’t get hurt.  It’s the opinions that aren’t asked for that are risky.

In a moment of curiosity, Robbie sweetly asked one of his nannies, “Nanny Nicky, how old are you?”

She replied, “I’m 58 Robbie!”

The response…

“WOW!  That’s almost SIX DECADES!  That’s SOOO many years…  When are you going to die?”

For someone who was non-verbal until he was around 3, language and grammar have come along beautifully (and alarmingly) well.  Some may say too well.

It’s bandied about that autistic people do not care about the feelings of others.  I can tell you that this isn’t true.  It’s a myth that’s perpetuated by the media and how autism is presented in films.

I’ve always hated my nose, ever since I can remember.  Robbie, in a rare moment of studying my face, exclaimed, “Mummy, your nose is broken!”

Obviously, I’m old enough that I’ve made my peace with my nose, but in my younger years, this would have been a verbal stab to my insecure heart.

I didn’t react negatively, I just said no, it’s got a bump in it, and asked “is it horrible then?”

Robbie smiled, kissed me on the nose and said “no Mummy, it’s not broken.  It’s nice.”

Killing Darren

Let’s turn the clock back, to 2016.  We were living in a small, 2 bed Victorian house, on the most cramped street you could imagine.

The street itself was incredibly narrow, with cars parked on either side.  Quite frequently, you couldn’t park anywhere near your own house (I’m talking a 10 minute walk away here – yes, I know, first-world problems) and at this time, Robbie was a traffic-diver.  He would try to escape as soon as we left the house, walking along the street with him was out of the question.  It was stressful and dangerous.  We will talk more about his escapology career soon.

The whole road was full of residents who would look out of their windows periodically to see if someone had moved their car, so that they could move their own closer.  You could see the tension along the street, along with the litter.

It was a horrible place to live.

The house itself was cramped and in a poor state of repair, so we frequently had a handy-man round to try and make it more habitable.  Enter, Darren.

Darren was a nice man, who would always take the time to say hello to Robbie and engage with him if Robbie chose to.  He would always give warning if he was going to use a drill, to enable me time to put on Robbie’s ear defenders.  He was quiet, unobtrusive and a good handyman.

However, as it later transpired, unfortunately, Darren also was tall, with dark brown hair and around the same age as Robbie’s daddy.

One day, he knocked at the door.  I had forgotten to warn Robbie, so he ran up, distractedly, and cuddled Darren, saying “Daddy!”  Darren put his hand down to ruffle Robbie’s hair and said “ahh mate!”

I’m going to pause here to prepare you.  I am giving YOU the preparation we sorely needed, as we had no idea of the bomb that had just detonated in our lives. 

Robbie looked up and I saw the expression of happiness on his darling little face, die.  He went blank.  He visibly drew his emotions inside himself, turned and ran up the (incredibly steep and narrow – yes, it still rankles) stairs.

I reassured Darren that he hadn’t done anything wrong and followed Robbie up. 

Let’s just say, I have a good idea of what witnessing an exorcism is like.

As my sister in law said to me afterwards, embarrassment is a horrible emotion, for both adults and children.  Let alone an autistic child who had only been on this earth for 4 years and who hadn’t experienced it before.

Robbie started making scarily detailed death threats against Darren.  Darren never knew of these – sorry Darren, you have no idea how close you were to being “ended” by a four year old – and some of the more descriptive ones include –

“I want to spin him around like crazy until he dies”

“I want to push him in a train door and cut him in half”

“I want to cut his hands off” – the hand one was particularly horrible, because it was Darren’s hand that touched him as he ruffled his hair.  An eye for an eye?  Mafia-esque retribution?  Had Robbie been watching The Godfather? Darren had no idea of how close he came to losing his livelihood. And hands.

These threats would keep coming up in discussion, first thing in the morning, last thing at night, every quiet moment in between.  He would be playing, look up at me with those big, seemingly innocent blue eyes, and ask, “can I have an axe for my birthday?”

“Erm, why Robbie?”

“So I can chop Darren’s head off.”

We tried so hard to move him past this.  Of course, it should go without saying that 99% of it was for Robbie’s emotional health and well-being, but, well, let’s be honest here. 

The house was a hole and I still needed the jobs done. 

I would speak to Robbie beforehand to prepare him for Darren’s visits, and ensure that he was suitably distracted with technology to minimise the interaction between them.  Over time, (a year!) the embarrassment faded, and we started to move on from the incident.

This was a lesson for us all, in terms of predicting possible scenarios for Robbie.  Over time, both his dad and I have become proficient at completing mental risk-assessments when we are planning something.  Some of these we have committed to paper.  Unfortunately, this couldn’t have been foreseen.  It was a strange and complex one.

Just know, that if you do happen to cross Robbie, he can plan your demise brutally and efficiently.

Other than that, he’s a charming little boy.