Let’s give the baby a nice, normal name…

This handsome boy here is Tuco (Too-co): 

He’s our Labrador. Giving him an ‘original’ name taught us a valuable lesson before we were able to inflict our stupid name ideas on any human children we had. Tuco is named after the best ever film character in existence, played by Eli Wallach in ‘The Good, The Bad and the Ugly’. Not the drug baron from ‘Breaking Bad’.

When I’m out with them both and I’m harping on about Owen’s Autism to some poor dog walker who only wanted some fresh air, I’m often met with the following comment:

Wow! He must be fantastic with Owen! He’s a labrador after all.
Not exactly. He tolerates Owen. He won’t actively seek out Owen’s company. But he puts up with a lot of being ‘fixed’ with plastic tools and being fed his kibble one tiny piece at a time.

But maybe the benefit of having Tuco around Owen is something that I don’t recognise because it’s never been any different? I’ve had Tuco for six and a half years. He wasn’t that impressed when we brought Owen home but he wasn’t too bothered either. 

Gretchen Carlisle completed a study about the link between Autistic children and pets. She found that having any sort of pet at home opens up social opportunities for children which in turn, gives children with Autism a chance to engage and talk about something they know about.

Owen would be more likely to talk to somebody about Tuco if they approached him which happens quite a lot seeing as he’s a handsome old beast (Tuco that is). Owen absolutely adores him. 

Tuco , opening up social opportunties 🙄

She says that pets act as ‘social lubricants’ for children with Autism. What’s brilliant is that it means that other children will come over and initiate conversation about Tuco which is what Owen needs. It also gives him lots of confidence around other dogs.

He loves to feed, walk, chase and shout commands at Tuco and he does have a lot of speech that involves Tuco in some way:

Tuco is hungry!

No Tuco!

Silly dog!

Tuco, sit! Paw!
Admittedly, it would have been really interesting to see how introducing a dog to the family after Owen was born could have affected him. But then, a puppy and Owen is a combination that nightmares are made of.

The study found that the best pets for children with Autism are small dogs.

Bad luck, Tuco. Still, I’d rather have my big brown bear than a snake or something.

Even one in a top hat.

‘The Social Skills and Attachment to Dogs of Children with Autism Spectrum Disorder’ was published in theJournal of Autism and Developmental Disorders. 


You may have seen this video that is doing the rounds on Facebook etc:

Autism Meltdown

It’s a brilliant way of showing of what a trip out can be like for a child with Autism and shows the resulting ‘meltdown’.

A meltdown looks similar to a tantrum. Owen has had two meltdowns. To anybody who didn’t know that he has Autism, he would have looked like a naughty boy having a paddy because he couldn’t get his own way and I probably would look like the world’s most ineffective mother.

But the cause is very different. Owen does have the occasional tantrum – usually if I have said ‘no’ to something. That’s all part and parcel of being a pre-school child. 

I’ll describe one of the two meltdowns he’s had. We had been to Poole for the day and he had stayed awake all the way home. He’d had information thrown at him all day. New people, new house, new park, new food…

I had tried to keep everything normal for him, we took his favourite film with us and familiar toys. But once I got home with him and asked him if he wanted juice or milk, he started to get very worked up. Two hours of utter devastation and conversations as the following:


Me: Ok, let’s put the plug in.


Me: Ok, no bath, plug out.

Owen: BATH! BATH! 

There was no way of calming him down. We tried everything. It was exhausting. Once a meltdown starts, it’s pretty impossible to stop.  

A child having a meltdown has no control and there is no intention behind the meltdown. A child having a tantrum has control and there’s always a concrete reason for it – they didn’t want to share or  were told they aren’t having any more chocolate.

Poor Owen ended up finding himself a damp towel, wrapping himself in it and falling asleep. Nothing I could do was going to stop him from melting down.

But now, I know the signs. If he starts getting worked up and indecisive, we go for a drive or just remove ourselves from the situation and go somewhere quiet.
Fortunately,  Owen’s meltdowns are very rare – for the time being…

Put a wet paper towel on it…

I’m writing today’s post from the Children’s Assessment Unit at the hospital which is on the Howard Ward. 

Today we had a bit of an incident. Poor Owen had his feet swept out from underneath him at the bottom of the slide by an over enthusiastic slide user. He landed on his face on the edge of the slide.

As I’ve mentioned before, Owen is hypo-sensitive meaning that he has a very high pain threshold. The noise he made meant I knew that he had really hurt himself.

Being a former Year 1 teacher, I have dealt with lots and lots of bumped heads. Standard procedure is a wet paper towel (is there nothing a wet paper towel can’t cure?) and a quick chat with Mum at the end of the day.   

I’m also paediatric first aid trained so I know what to watch for. He calmed down, spent an hour inspecting lorries at Grandad’s workshop and playing in the garden and then he suddenly fell asleep.

 Owen occasionally falls asleep in the afternoon but it’s always a fairly drawn out process if he does. Mother’s instinct kicked in and I called our health visitor who told me to take him to the minor injuries unit. 

What worried me was how quickly he went from this:  

…to being completely exhausted. He was rousable – but didn’t even wake up properly to look out of the window and didn’t want to harass any of the other patients in the waiting room. Most unlike Owen! 

Once there he was sick and after a sleepy couple of hours we decided that observation on the children’s ward at the major hospital in the next city was wise.


I’ve walked up and down this corridor more times than I can remember

He was sleepy and sick again but shortly after some paracetamol, crisps and Ribena, he perked up and we were allowed home.

Again the speech disorder creates problems. Owen can’t tell me if he’s in pain or if he feels unwell. A lot of it is detective work. 

Anyway! We’re home now with a diagnosis of a concussion and he’s asleep. It’s been a busy old day. 

The staff at the Bognor Regis War Memorial Hospital and at St.Richard’s Hospital in Chichester were all as fabulous as ever. 

Next time, maybe I should just try ointment. As recommended by Nursey (Bernard). 


The Early Bird catches the worm…

Today I put my ‘student hat’ back on and started a course that is run by some of the therapists from the Child Development Centre. It’s called the ‘EarlyBird course’ and is designed to help parents and families of children with Autism to learn about the disorder in more depth. This in turn will help us to help our children in the most effective way possible.

Back to being a student…

I really wasn’t sure about it. I couldn’t see what I would learn that I didn’t already know about Autism.
I was wrong! It was great!  Just today I learnt that Owen probably asks the same question over and over again because maybe he hasn’t understood my answer the first twenty times. I also learnt that children can be both under sensitive and over sensitive at the same time. I’m pretty sure this applies to Owen.
We watched this brilliant video:

A is for Autism video

I’ve enjoyed listening to other Mums and Dads talk about their children and being able to laugh with them about our experiences. Owen has been in the crèche they provided and he was happy to see his little friend from Theraplay 😀

If you have the opportunity to go on such a course, do!

So that’s me every Tuesday, for the next ten weeks. I even have homework! 

The above photo is a slight misrepresentation of student me. This is the reality:



Every little helps…

We had speech therapy yesterday – this happens once a month now and will be done ‘in house’ once Owen gets to special school. I’m looking forward to not having to try to park at the Child Development Centre anymore – anyone who has had the misfortune to come in my car knows I cannot parallel park.

Today we had a breakthrough! (With his speech, not my parking). Owen has spent most of the past year learning how to follow ‘one step’ instructions such as: 

Give the cup to the teddy

He’s been given a choice of two items and all he has to do is choose the correct item for the teddy bear, who is the sole recipient. I think this illustrates how much he struggles to understand speech. 

Today, we did a few ‘one step’ instructions and then attempted some ‘two step’ ones. Owen has never been able to follow anything more than one simple instruction. 

He had several items in a ‘shop’, a shopping basket and three recipients to choose from so that he could follow a ‘two step’ instruction. It is phrased the same way:

Give the cup to the teddy.

But he has to really listen because he has to choose a cup from around ten items and then remember who he has to give it to.

Today, he just started doing it like it had never been a problem. Two step instructions? Yeah, completed it.


But then he really had to listen and think. He was asked to:

Give the elephant AND the brush to Mummy.

I’m not sure what sort of a shop this was meant to be but bloody hell he only went and did it! Time and time again! Teddy and Peppa Pig were ignored and my shopping was delivered safely to me. 

Ok I take it back – it’s clearly a very efficient shopping service he’s running because my elephant and brush were not substituted for a loaf of bread and seven potatoes…



But I don’t speak Dutch!

It’s the day everybody finds out which primary school their children will go to in September. It’s all very exciting! 

I had to apply for a ‘mainstream’ (normal) school place for Owen too, just in case things don’t click into place for him to go to special school in September. 

So today, I will find out what could have been if Owen was able to go to a mainstream school. I’m still excited! I’m excited for my friends to find out for their children too. But it’s a funny feeling at the same time.

It’s explained really really well in this poem: 

Welcome to Holland

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” 

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy. 

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. 

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. 

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” 

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. 

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley 

We got into the mainstream school we wanted! Hopefully we can get our place at the special school too! If not…


I did it my way…

If I was Owen’s teacher writing his report, I’d say that he was a ‘determined’ child… but I’m not (thank god) so I’ll just put it bluntly and say that he’s a ‘bloody minded little ratbag’. 

‘Owen is a determined boy who is able to concentrate well on ideas and activities that he is interested in’ = he is a stubborn little monkey

Once he’s decided he’s going to do something / not do something, it’s nigh on impossible to get him to change his mind. The speech disorder has a heck of a lot to answer for. I can’t reason with him. 

It’s a bit better since the introduction of the ‘first’ and ‘then’ phrase. For example…he’s decided that he’s not going to sit in the seat of the trolley seat at Tesco.

Owen. First sit in the seat. Then  you can have buttons.

We all bribe our children with chocolate right?

It’s using the ‘First and then’ that he’s learning that sometimes he has to do something that someone else has asked him to do before he gets a reward. It’s just tiny things like first put your shoes on then we will go to Grandma’s but it’s brilliant preparation for school. 

His way of thinking is very rigid which is the same for a lot of people with Autism. It’s all or nothing. He didn’t just like Toy Story, we had to watch it over and over and over again. He renamed everybody after the characters and has all of the toys. He would spend ages at the Mr Potato Head table at preschool. 


It’s a completely different way of thinking for me. I specialise in grey areas, indecisiveness and wishy washy theories about Heathcliff and Cathy.

Ok….there’s no indecisiveness about who has been the best Heathcliff..😍


This is why people with Autism generally favour subjects such as Maths and Science at school. The answer is either wrong or right. It’s comfortable. You’re not going to ask for a million different interpretations of a Philip Larkin poem. 

Play is always on his terms which can contribute to social problems. Portage are helping him learn to take turns and think more flexibly. I’m lucky that although he uses black and white thinking, he’s still a very easy going and relaxed little soul…if that makes any sense! I suppose this explains the lack of tantrums in our house.

This ‘all or nothing’ way of thinking then leads to special interests and obsessions but more about them another time. Combined with the lack of awareness of danger, it can make for a very trying visit to pretty much anywhere! 

It’s like trying to parent Dangerous Brian…



*For the record I loathe ‘My Way’ and swing music. It’s my own rigid thinking when it comes to music.

Sleep is for the weak (apparently)

I love to sleep. I even managed to have Glandular Fever when I was 17 which gave me a legitimate excuse to sleep more.

When you decide to have a baby, you are usually fully aware that sleep is going to become something of a luxury…at least for the first couple of years. I remember moaning about how tired I was when I was in the later stages of pregnancy. I had no idea what tired meant. None. 

Quite often people will see Owen doing his usual thing of never stopping moving and will tell me, ‘He’ll sleep well tonight!’. If only! And I can say goodbye to any ‘free time’ I thought I would get in the evening if he sleeps for more than two minutes during the day.

Children with Autism often struggle with sleep (just my luck!). Owen needs me with him to settle down for bed. He goes to sleep in my bed (I know, I know, but it’s the only opportunity I get for a cuddle) and I then transfer him to his bed when I come back upstairs later. 


Touch wood, once he’s asleep, he will stay asleep until 5ish. Pretty good going but this is the eye of the current storm – he was waking at 4am up until recently. He will also ‘pull an all nighter’ from time to time and will wake from anywhere between 11pm and 2am and just stay awake. Those nights really test my patience but the second he’s nodded back off, he looks like Mummy’s little angel again…


Why do children with Autism struggle with sleep? Autism often comes hand in hand with other issues that are known to cause problems with sleep…ADHD, Anxiety etc.

The social interaction and speech disorder also play a part. Can I convince him that 1am is not time to get dressed for school? Like hell I can. He doesn’t understand that it’s the middle of the night, Mummy is exhausted and it is time for sleeping. Can I explain it to him? Of course not. I’ve learnt that the best way to deal with it is to just get up and stick a film on (thank you Amazon Prime). 


Dressed and ready for school

Autism is also linked to problems with the hormone ‘Melatonin’ which helps to regulate sleep. I haven’t gone down this route but it’s something to consider later on. 

Owen has a good bedtime routine which involves a nice bath and music as he’s nodding off. Sometimes this is key for children with Autism.  

Another issue is the hypo-sensitivity. Weighted blankets are supposed to be brilliant for children who are ‘under’ sensitive. You need a lottery win to buy them so I’ve found that pillows on his feet work well. 

Our Portage (play therapy) worker, Georgina gave me some research to look at about how a lot of children with Autism settle down to sleep better if they can have some physical play time immediately before bed. Interestingly, Owen has recently discovered jumping on the bed (deep joy) and I’m in the process of trying this new method of settling down. 

Autism.org.uk suggest finding ‘creative’ ways to manage sleep issues. I’ve found that headphones and Amazon Prime on the television and tablet ensure that I at least don’t need to spend these waking nights watching Disney’s entire back catalogue. Plus caffeine; lots and lots of it.


I told you I wasn’t creative.


The majority of parents spend a lot of their time teaching their children about danger. What to avoid, what to do and why. 

Lots of people say that people with Autism have ‘no fear’. If you saw Owen’s face when he tried to open our Home Start volunteer’s car yesterday and the alarm went off then you would know this isn’t true. He has fear but doesn’t understand what is dangerous and why.

Again, it’s something I can try and explain to him. I can tell him that he shouldn’t walk in front of the swings because he will get hurt and I can tell him that he must not climb on the table because if he falls off it will hurt but he won’t understand what I am saying.
Why do people with Autism struggle to understand danger? 

Bec Oakley (www.snagglebox.com) writes about a part of the brain that is thought to be different in children with Autism:

A small almond-shaped area deep in the brain, the amygdala has a major role to play in assessing danger. Here’s what it does:

Learns what’s dangerous
Remembers it

Recognises it when you see it again

Figures out what to do about it

There’s also the inability to think past the next two minutes, like with the choice making. Owen won’t look at the swings and imagine what might happen if he walks in front of them. He just knows that he wants a go!

It’s exhausting. Absolutely exhausting and one of the most trying parts of being an ‘Autism parent’. It’s scary thinking about the future. We do things like tell him to stand in the corner of the kitchen if there is cooking happening (my cooking isn’t that bad) and we have bathroom locks on doors and stair gates. Prevention is better than cure!

He will say ‘Don’t touch the candle!’ and usually follows his own advice (thanks to Echolalia and behaviour mimicking) but doesn’t understand that because it’s hot, it’ll burn and it’ll hurt. I can then let him try to blow the candle out but because he doesn’t understand the danger, I have to hover to make sure he doesn’t try to touch the flame etc.


To conclude;  he’s very good at sounding and looking like he knows what he’s doing but actually…doesn’t. 

That’s my boy 😀