Wales 2017


We have just got back from Hafan Y Mor which is a Haven site in North Wales, we stayed in a caravan and I cooked K his favourite meals and he got to go swimming and play in the fountains and do all the things that kids his age are supposed to do.

It was a lot of fun but very tiring for everyone, he continues to get up at 06.30am every morning, we took his clock for him from his bedroom and his blue night light

The Blue light to help him sleep (he sleeps better with a blue light, we aren’t really sure why but it works).

The clock so he knew what time to get up, he actually wakes much earlier than 06.30am but he knows that he isn’t to get up until after then.

We took his teddies for bed and I downloaded some stories for him onto my kindle so he could still have the same bedtime.

He had his ipad pre loaded with programmes he likes to watch and minecraft. All the things that make it easier for him to cope with the change.

And cope he did, he was really good he really enjoyed it. The only slight dampener was cashing in the tickets that he won at the arcade, it was busy, he can’t talk and there was that much to choose from he couldn’t easily tell me what he wanted. This resulted in a meltdown that lasted for over an hour.

The rest of the break was great, I have emailed Haven and suggested that they provide some leaflets in the accommodation with the details of the prizes for children to look at to help children like him communicate.

Or just a posted or something away from the counter, the whole experience was just to stressful for him.

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SLT Appointment


K had his speech therapy appointment on Wednesday, they reviewed his progress.

There are some real positives that came out of the appointment, she said that she thinks that all of the sounds that he needs are there and are starting to develop, and that he is starting to be able to blend sounds.

She also said that she thought that it is just to much effort for him to make the sounds all of the time as he can do it when mirroring an adult but not when he starts to speak himself.

She has put him forward for some more intensive clinic sessions to compliment the work that is already going on at school with him one to one, the aim being that he will start to find making the sounds more natural and less work.

As K doesn’t make conversation and therefore never really practices any sounds he has never developed his speech in a natural way as a ‘normal’ child would.

I am really hoping that these sessions (when we finally get them) help him

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Breakfast 


This is what breakfast is in our house 

Two slices of white bread with butter or sometimes cheese spread cut into squares with no crusts. 

Leaving the crusts on results in him taking just one bite out of each square as he tries to avoid crust. 

You might think I am pandering to him, but honestly,  I just want him to eat and if this is what it takes then so be it.

K turned 7 today


K turned 7 today and he had some friends over for a very small party.

We asked Lab Rascals to join us to provide some scientific entertainment for him and his friends.

This is the first time that he has had any kind of a party and he was very excited when his friends turned up, we had his disco light on, and he had his new plasma ball out ready for when they came.

Lab Rascals gave all of the children lab coats and safety glasses before starting a variety of hands on experiments with dry ice, including blowing up balloons using it, adding it to hot water to make ‘smoke’ and making bubbles (pic below).

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The children also made some bath bombs which K is very excited to try out in the bath tomorrow.

Then I cooked them one of K’s favourite tea’s – Chicken nuggets, waffles and pasta shapes. K doesn’t like party food so it would have been a waste for me to do party food, finally they all had ice cream before getting the Lego out and spending a bit of time with his friends playing Lego and eating sweets before it was time for them to go home.

K really enjoyed himself, we didn’t have any arguing at all and apart from being excitable, they all behaved really well, and were interested in everything that Lab Rascals where explaining to them and what they were doing.

The Deep – Hull


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This morning I took K to The Deep, prior to visiting I had tweeting that we were planning to go and wanted to get there early to avoid any crowds, they sent me a DM to say that they open at 09.30am not 10.00am on a bank holiday and that they are usually really quiet for the first half an hour.

We had been up early anyway and were ready so it wasn’t difficult for us to get there for that time.

When we got there I used his DLA letter as proof of disability and this allowed me free entry as his carer, the ticket which you buy is valid for 12 months and can be used again and again, on any day but a bank holiday.

We were the 1st in, in fact we only saw 2 other people all the way round, everyone else was staff, it was a little weird at first I have never seen it so quiet.

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I had taken K to The Deep previously and it had always been busy, he had just ran from one thing to the other, not really interested in anything and just been a bit overwhelmed by everything and everyone around him, and just getting himself into a spin.

This time we were alone for the majority of the time, he spent time looking at the various computer screens, interactive displays and of course the fish and the penguins.

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He especially loved the dark area and the little jellyfish as they looked like they glowed, and the ice wall which made him giggle when he touched it.

I am so pleased that we went so early, the queue when we left was going out of the door, when we got there there wasn’t anyone in sight, the car park was empty.  Had they not sent me the message then I wouldn’t have known to go that early.

We were there for just over an hour, which isn’t a great amount of time but he had seen everything and the ticket is valid again and again so its not to bad really.

He pressed all the buttons, span all the wheels, looked at all the fish, and tried to hide from the sharks.

On the way out we picked up a new bath toy and some chocolate, so he is a happy boy today.

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Our Visit to Honeysuckle Farm nr Hornsea


Yesterday I took K to a farm for the afternoon, not the day, we didn’t take a picnic or do anything that might be stressful for him, we went for a couple of hours in the afternoon after we had had our usually lunch at home.

This was more than enough time for him, a couple of hours anywhere, doing anything is usually all he needs before he starts acting up and wanting to go home.

So we got there for just after 2pm, I got him a bucket of feed and we went to find the cows, K has been obsessed by them lately, and keeps mooing at people. He was excited to see the cows and gave them some of his animal feed. He even posed for a picture.

Then we went to see the ‘naughty’ goats, he laughed as they tried to take the feed out of the bucket instead of the little bit he was holding for them. He surprised me as I thought he might be a little intimidated by them due to there size and how pushy they could be to get the food, he seemed totally at ease.

A Horse and cart ride was next, he hid when the lady driving it asked if anyone had any questions and buried himself into me, but I told him it was fine, we could just listen and he relaxed again. He liked being told about the cows and about how the Bull was going to be moving to a new home soon.

Next we went to see the lambs and the sheep, he loved the lambs, he stroked them while he fed them and spent a long time there, hand-feeding them and patting them really gently on the head while he did so.

We went for a walk around the pond and around the maze, before I watched him play in the forts and run through the tunnels, and finally there was time for some ice cream and a cup of milk for K and a coffee for me in the cafe.

Overall it was a really lovely afternoon, K really enjoyed it, we didn’t have one meltdown or sad face all the time we were there, it was pretty quiet, probably because we got there late and missed the people that would have been there for the day, or a picnic.

We were able to walk around without feeling like it was crowded, there were plenty of other children there but he was able to play on his own in his own way. The animals all looked really well cared for and been able to feed them was a real highlight for K.

We will definitely be going back, maybe next time we can take K’s Dad with us, he missed it this time as he was at work.

Here’s a few of my pictures from the day (I took them so I am not in them)

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