It Got Better

Thursday Evening: The Turning Point

It’s Sunday, the end of the October half-term and I’m sure you’ll all be pleased to hear, it got better.

On Thursday evening, two things happened.
First, I messaged my friend who I met on holiday. She told me to try, however hard, to be positive. Her son can pick up on the smallest emotional change in her and she’s learnt that if she’s low, everything is worse. She also reassured me that this is incredibly hard to do and that she’s been there.

Second, an old colleague-turned-friend-turned-Summer’s jiu-jitsu teacher messaged asking if I needed any help. I replied: Yes! And the next morning she came over and helped me with the kids.

Friday: Biscuits, Friends and Witches

We made Day of the Dead biscuits, it was actually Halloween after all. And it went really well.

River wanted to stir the mixture and kept asking for “more ingredients.” He even managed to cut out his own biscuit and put it on the baking tray. What I’ve realised is that when you have an extra person, things are so much easier.

Whilst I was cleaning up and preparing lunch, Emma was reading with River or playing with him. It meant we could all have lunch and then enjoy decorating rather than me trying to do it all.

Decorating the biscuits was harder than I thought, I’m so bad at presentation – won’t catch me on Bake Off! River found a shortcut and just poured the sprinkles straight into his mouth. I wasn’t against it.

Summer’s were the best and it honestly was so great to enjoy an activity altogether.

Kate arrived after our baking session and we attempted to watch Hocus Pocus. River sadly wasn’t a fan of the witches though. It’s so hard to know what he’ll like; he’s so emotional with all the characters and the opening scenes like most films from that decade are weird. But with everyone making a fuss of him, he was fine and settled in.

A quick walk to the shops to collect new winter school coats and buy Friday pizza, then it was time to get ready for the big part of the night, Trick-or-treating.

Summer put her Wednesday school outfit on and Kike arrived home in time to plait her actual hair (I don’t do hair). River wore his skeleton outfit that’s he’s been wearing all week.

Friday Evening: Trick or Treat!

We had a plan: River would come to the first three or four houses and then go home. Kate and I would take Summer for the rest.

When I said it was time to go:

“NO!”

As predicted.

Then, after a count to 10, he picked up his bucket.

“River go trick or treat.”

“OK, Mummy!”

And off we went.

A Small Side-Note (The 6-Second Rule)

I’ve been reading about the “six-second rule.” It’s a communication strategy where you wait six seconds after giving an instruction or asking a question to allow for processing time.

It helps autistic children who may need longer to switch attention or process multiple streams of information. You then repeat the instruction using exactly the same words if there’s no response. You don’t want to confuse them by rephrasing.

I’ve been doing it a lot and it does seem to be working. I’m used to the automatic no but if you wait silently, it often changes unless it’s truly something he doesn’t want to do (like have his hair washed).

Friday Night: A Halloween Win

The five of us set out. Skeleton River happily skipped along with his bucket and we went to our first house.

To my surprise, he walked right up to the door and sang his little song:

“Knock, knock, trick or treat!”

Obviously, the door didn’t open, as he hadn’t actually knocked but Summer to the rescue meant it did.

He chose a sweet, put it in his bucket, said “Happy Halloween” and skipped back to me.

All the videos worked! Fifteen months of constant Halloween content and he’s got it.

We crossed the road, went to another house. Apart from being grumpy with his sister for knocking too much, it continued.

It felt mean to take him home, so we kept going.

It rained a little, so I was pleased we brought the pushchair not least because we stayed out for just under two hours!

He’d hop in, wait until we reached a door, hop out, choose his sweet, return. Eventually he got tired of talking, so, ever the pleasing mum, I did the loud “THANK YOU!” from the gate.

By the last house, he’d become quite the sweet connoisseur. He looked carefully and chose a very large Frankenstein-head lollipop and added it to his overflowing bucket.

We walked home just in time to see the lightning and were thrilled to have missed the storm.

At bedtime, he didn’t even mention the bucket once. It wasn’t about the sweets, it never was.

Summer had two sweets and happily went to bed.
A very successful evening, topped with a Kate sleepover to talk through all our reality TV shows.

Saturday: Playdate Progress

Kike had to work again Saturday, so the kids and I had a quiet start. I’d arranged to see a friend in the afternoon, so a calm iPad morning was fine.

We headed off after an early lunch and I loved the outside of her house, full Halloween decorations inside and out. River loved it and happily went in.

I was a bit apprehensive as usual. My friend has two boys, four and six, so it could go either way.

Amazingly, it went really well. So many fun decorations; a skeleton dog, dancing pumpkin and a very loud doorbell. River wandered happily, playing with everything.

Summer, the forever socialite, made friends with the older boy and they went upstairs to play.

After an hour or so, River made his way upstairs too, which I was trying to avoid but once he’d found the boy’s bedroom there was no getting him back down.

I was nervous, I’ve never let him play without my constant supervision, especially in a new place.

But Amanda had a camera in the bedroom so I could watch him on her phone. Genius.

We could chat and if I felt anxious I could glance and see him playing with a Mario marble run.

We stayed nearly three hours. He played the whole time, not with anyone but that’s fine. He even read a whole book to himself, which he’s never done before.

Amanda was shocked and I explained about the hyperlexia, it still is shocking to me to be honest.

I was so proud of him. After the week we’d had, I needed a win.

We came home to find Kike back, we had dinner and a relaxed evening of TV and games.

Kike and I even stayed up to watch a film, Passenger in Room 10 (something like that). Keira Knightley on a yacht. It wasn’t very good but it was nice to not just sit and scroll.

Sunday: The Wind-Down

Kike took Summer swimming this morning while I sat with River and went through the Halloween social story Kate made. It explained that it’s time to say goodbye to the decorations until next year.

He seemed OK about it. He helped me find the decorations and put them in the Halloween box. He kept his two new toys, blanket and I’ve left our skeleton friend by the TV because he makes me smile.

The house looks tidy again but I miss the colour and change. I really need to get some paint on the walls. Probably should check the Christmas box, it’ll be December 1st before I know it.

I spent the morning cleaning, playing and making a roast. Then I asked Kike to take the kids out. I never do that and I think most of the time it wouldn’t occur to him to offer but I really needed some time.

I haven’t really been away from River all week and it’s been a lot.

After about 45 minutes, he messaged asking if I wanted to meet him in a pub.

“No,” I replied. “I want to be on my own.”

He said not yet, but I know he doesn’t like to be out too long. It’s getting cold and he hates the playground, like any sane adult should.

I agreed to meet him in an hour and brought the iPads. Both kids were tired, so they happily sat while we chatted.

Then the usual Sunday routine: baths, uniforms hung up, bags ready. Back to school.

River screamed NO! at bathtime but I got the timetable and once we’d gone through the pictures, he accepted it. We did the 6 second rule and he did walk himself to the bathroom.

Songs sung, stories read and he’s in bed. Time to prep his visual timetable for the morning with the Nursery Card on it. Let’s hope it helps.

Reflections: Empty Cups and Oxygen Masks

Now that half-term is over, as always I like to reflect.

I started positive, had a couple of good days, crashed, then came through it.
It felt like a month rather than a week. I feel completely wrecked and not ready for work tomorrow. I’m also horribly jealous of all my friends who’ve been on holiday or watched TV all week.

After looking back, how does it go from good to really bad so quickly?

It’s exhaustion.
It’s because there’s only so much I can give.

My dad said I’ve always been fiercely independent, which is true but that has its negatives. I’m not good at admitting when I need help. I always think I can do everything myself and I’ll be a better person for it.

That’s not true.

There’s all the sayings: ‘you can’t fill from an empty cup‘, ‘you have to put your own oxygen mask on first‘ which I know, because I’ve told other people!

So, I guess this is it.

I need help. Actual physical help.

I’m going to find more people I can trust to babysit the kids so Kike and I can have time together. I’m going to look into clubs and organisations that might take River for a couple of hours during holidays to give me a break.

And I’m going to plan more time for myself.
I feel that last one might take the longest…

I also want to make more SEND parent friends, people who understand what it’s like to live in this in-between space. The constant planning, the fear of going somewhere new, the scanning of exits before you even sit down. The friends who don’t take it personally if you have to leave suddenly or if you cancel altogether because you just don’t have the energy to face the world that day.

I want to find more people who understand the noise, the sensitivity, the exhaustion and the love that keeps you doing it all anyway. (If you are one or know one send me a message)

Fundraising UPDATE

A massive thank you to everyone who donated, you helped raise £342, which is amazing.

I did what I always do: started strong, dipped and then panicked.
It meant I had to get the exercise bike out from the shed and squeeze in 10 miles a day towards the end which I can tell you I didn’t enjoy.

I won’t lie to you lovely people, I didn’t quite finish on time.
I had to do the last 5 miles today… but like I always say, progress not perfection.

I’m keeping the bike out for the rest of the month to try and keep up the good habits and maybe the exercise will help with the positivity.