Monday, 29 February 2016

I'm so happy my son has echolalia

Nearly 75% of verbal autistic people display some kind of echolalia. It is 'echoing' or repeating or words, sounds, sounds made by someone else. It's there because the child doesn't understand what's being said but thinks a response is appropriate.  It was one of the key 'symptoms' that led to our eldest son's Autistic Spectrum Disorder (ASD) diagnosis, so why on earth am I pleased our second son is now showing signs of echolalia?

Friday, 26 February 2016

Favourite Friday: David's iPad, an alternative to parenting?

I think if I told some people how long my son can play or should I say, is allowed to play, on his iPad I'd get strange looks. I know if I told people he spent hours everyday on it I'd be judged.

Some kids and adults with autism use their iPads to communicate. There are great programmes like Proloco2go that means an iPad becomes a tool to interact. But that's not what David does. He communicates mostly with Makaton sign language. In fact, one of the first signs David learned was the sign for iPad. So obviously I'm using it as an alternative to real parenting right? Here's why not..

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

Thursday, 25 February 2016

Dear Health Minister: Please, I don't want to lose my son

Our autistic son, David

Update: At the end of the summer 2016 The Guardian  has reported that families were struggling to find decent care after coming out of Winterbourne.  Looks like I've still got plenty to be afraid of .

Dear Sir,

I have this secret fear.  It sits way in the back of my mind and only comes out when I hear things that make me shake.... and then I think, please, I don't want to lose my son.

Wednesday, 24 February 2016

#WonderfulWednesday: How do I stop my child using autism as an excuse?

This week's #WonderfulWednesday share is an article by Chris at Autistic Not Weird which gives advice on what to do when you think your child may be using their autism as an excuse.

This is not something I have any experience with. Anthony is our terribly truthful child and David is still pretty much non verbal. Neither really understand the concept of an excuse, they simply say or sign it as it is.  However it is something I've seen asked lots of times before including in the Autistic Not Weird Facebook page which I've been following since I started blogging.

Chris is able to give advice as not only a person with Asperger Syndrome but also as a former teacher and I think this makes his work invaluable.

What I particularly like about his article is that it's about helping the parents understand their kids. My favourite point is that sometimes children (and adults too) can reference their autism when they are finding something difficult. Chris says to them 'autism' is synonymous with struggling and that they can get the two mixed up. 

This is what I can see Anthony doing.  Along with having difficulty with over generalising, we haven't had the 'you have autism' talk but sometimes we will say that he 'just can't do it' and by the look on his face, I think this is what he truly believes.

Chris' article is informative and helpful. If excuses are filling your life at the moment then head over and have a look. 

Our blog - Autism and generalising, the day everything was a dog

Autistic Not Weird - website and Facebook 

Tuesday, 23 February 2016

Autism and sleep: The miracle of light through a curtain

I slowly blinked my eyes. That can't be right, can it? As I came to, I realised that I was blinking because there was light shining through the crack in the curtains. Surely that's not possible? Did I sleep through the night?

Monday, 22 February 2016

Funday parenting for our autistic son

Finding things to do with autistic children can sometimes be difficult. When our second son was diagnosed with autism we already knew taking him places was difficult. However, David has come along way and I've written before about the fun we've had on the inset days when his brother has been at school. Now it was Anthony's turn. He is a little older and he and we have learned lots of strategies that enable him to do more things. This morning both his younger sister and brother were in school and nursery and as we got in the car to spend the day with him, Anthony declared "Today is my Funday."

Just because both our boys have autism it doesn't mean that they don't like doing things. Inset days are great because places aren't as busy at the weekend and this takes away one of the key issues we have with all the kids. It takes away the worries about communication, the worries about sharing and the worries about being over stimulated by other kids.

We tackled the playgym with great success with David's last inset day when Anthony was at school.  So what did we do and how did we manage on Anthony's self declared Funday?

1. Taking our autistic son to an arcade

The arcade is an attack on your senses. Sounds can be overwhelming for a child with autism but it's important to remember that kids can be sensory seekers too and can really enjoy this stimulation. This means they can crave sensory input. But even with this and hardly anyone there, Anthony can quickly go from a seeker to suddenly having an overload. So how do we help him? One of our best tips, put him in charge of what he wants to do. We suggest activities that match his mood but he is in control and this gets rid of expectation and anxiety. Next, don't be worried about how long or how little time we spend there. When he is done, we are done, and he's managed to enjoy himself,

2. Going out for lunch

This is a rarity in our household. With David often on the iPad and Anthony's ADHD kicking in at the worst times, sitting for a meal isn't too often on our 'fun' agenda.  However, Anthony's favourite food is pizza. So if it's just us in a near empty restaurant with a pizza and no worries about him shouting out, wriggling or how long it takes to eat, then it can be a successful activity.  We just need to prepare him with our usual discussion about being able to have food like pizza at lunchtime and it being ok not to have sandwiches, but this does and did go down fine today.

3. Lastly the Cinema

An empty cinema can seem like a great place for someone with autism. Without many people there is the freedom to move around and talk and ask questions if you are having difficulty with the story. True there aren't bright lights but sound can be very loud in the cinema so it's worth not sitting too close to the front, especially if like Anthony you've already had a sensory activity for the day. Anthony's getting better at following the plot abit more, and going on an inset day makes the whole experiment much easier.

And that made up Anthony's 'Funday'. Might not sound like much but I can assure you this is not only a fairly rare experience for us, but by the end of the day Anthony was pretty much exhausted.  Thank goodness there's a while before he has another inset day without his siblings again!

Our blog - Inset with David

As listed on:

Little Hearts, Big Love

Diary of an imperfect mum

Friday, 19 February 2016

Favourite Friday: Never prouder of last place

Today was Anthony's first Swimming Gala.  Nearly 100 kids with Special Educational Needs (SEN) from nearly 20 schools took part in a borough wide inclusive swim competition.  

Yesterday Anthony had woken up with a terrible cold and I was a bit nervous that he might not make it to his last swim lesson. By the time I'd got back from the school run, I was worried I wouldn't make it.  Read more...

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

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Thursday, 18 February 2016

Silly things you shouldn't do when your kids aren't there

We've been lucky enough to get a night off as a couple. This is no small thing when you have kids with additional needs. Two boys on the autistic spectrum and a toddler are hard work even for the experienced mum, but their grandparents have had training and can definitely cope for the evening.

But when you are only away for the night, it's a break but not one that's long enough to do things like you would without the kids.

It's nearly the end of dinner and here's what I've noticed so far on our night away.

1. I instinctively looked to see what was on CBeebies when I turned on the TV in our room
2. I kept looking for my bag, then remembered I had my wallet and keys in my coat
3. I looked for the special hair washing jug so I didn't get water in my eyes when I washed my hair in the bath
4. When we went for a walk I constantly took my hands out of pockets and then realised there was no hand to hold
5. I got way too excited at the prospect of there being both chicken nuggets and garlic bread available at the buffet bar

OK, some of these things are because the boys are on the autistic spectrum. They have sensory issues, have difficulty with hair washing, are very picky eaters and like to watch the same things on tv, but lots of kids like the same comforts.

What do you end up doing without the kids that you don't need to? 

As on:
You Baby Me Mummy

Wednesday, 17 February 2016

#WonderfulWednesday: I'm the youngest, but I feel like the oldest

This week's #WonderfulWednesday share is an article from Ayshah on BBC Newsround called 'I'm the youngest but I feel like the oldest'.

Tuesday, 16 February 2016

David's iPad, an alternative to parenting?

David's iPad - an alternative to parenting?

I think if I told some people how long my son can play or should I say, is allowed to play, on his iPad I'd get strange looks. I know if I told people he spent hours everyday on it I'd be judged. This post has been updated, please read the rest here.

Monday, 15 February 2016

Mess-Free writing fun with Doodle Dome

Kids and a doodle dome

Finding ways to get kids involved in writing can be a bit tricky.  At this time of year when it's still dark early, the kids are even less likely to be focused and more likely to bounce around the house at the weekends.  David got sent a Glow Crazy Doodle Dome for his birthday. I'd never seen one of these before, but I've found it ideal as it's basically a pop-up dark tent that kids go into and write on the walls.

Thursday, 11 February 2016

Favourite Friday: Without an ASD diagnosis, we would not..

It appears we are some of the lucky ones.  Our boys were both diagnosed with ASD by the time they were four years old and both received appropriate support from services, organisations and their different school settings. But what if we hadn't? Here follows 22 reasons why waiting 22 months for a diagnosis is too long. Read more...

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

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Never prouder of last place

Swimming Goggles: Never prouder of last place

Today was Anthony's first Swimming Gala.  Nearly 100 kids with Special Educational Needs (SEN) from nearly 20 schools took part in a borough wide inclusive swim competition.  Last night was Anthony's last swim lesson before his Gala and as his awesome swimming instructor couldn't get to the Gala it was me who was going to practice his race swim with him in the pool.

Yesterday Anthony had woken up with a terrible cold and I was a bit nervous that he might not make it to his lesson. By the time I'd got back from the school run, I was worried I wouldn't make it. I pretty much went straight to bed after I realised my headache was a migraine. I was very fortunate that Jane was at nursery so was able to go straight to bed.  I was just about able to function with the aid of a pile of painkillers for the afternoon school run. 

As I collected Anthony, I saw his cold was much better and he was all set for his last swim lesson before the Gala. Despite still feeling rotten, I wasn't going to let him down, so donned a swimsuit and headed to the pool. 

I still had the after effects of my migraine.  The lights in the pool pierced my eyes, the sounds echoed around my head and the chlorine made me feel a bit (more) sick. The pool was freezing cold, or at least that's how it felt and I was desperate not to get any water in my ears in case it hurt. I wanted everything to go smoothly and like normal please - nothing too complicated. 

But this was all about preparing Anthony. He had worn his swim team track suit to the lesson and we got undressed at the poolside just like he would need to do today.  And then after a short lesson, he and I went up and down the pool as Anthony practiced his race.  When he was happy and tired enough, we went home. 

If you've read, A lead pipe, a ball and a pair of feet, you'll know since Anthony has had lessons, his swimming has really come along. But he was very nervous about coming last in his race.  As he was going to be the youngest in his heat today this was entirely possible.

We have spent the last week talking about how racing is more about doing your best than winning. We have watched the 2012 Olympic backstroke finals several times and Anthony has watched some of the best swimmers in the world come last in their races on YouTube. He knew it was ok to come last but he was worried about it happening. 

Two pupils went with Anthony from his school.  He cheered them both brilliantly during their heats.  I was very proud of him when he took the effort to go and see one of his fellow pupils to congratulate them on winning their heat. He said he was very proud of them, and that made everyone smile. He got a kindness sticker when he got back to school for that. 

Anthony had waited three hours for his single length swim when we were finally called to get into the water. He had been grouped with boys who were older than he was, which happens at these events. Anthony is in Year 3, but the event allowed for up to Year 6. 

We both shivered as we got in. Anthony dunked his face in the water and then got into the 'take your marks' position.  The whistle sounded and he was off. 

For a short period he seemed to be travelling in a relatively straight line. 'Big arms and kick, kick, kick', I repeated over and over. He swam as best as I've ever seen. About half way down the length he traversed a bit but was still going ok. I glanced over and realised that indeed, Anthony would be last.  I winced ever so slightly but not enough to stop my persistent 'Big arms and kick kick kick' mantra that we had practiced to. As we past the five meter to go flags he said, "I'm nearly there" and a moment or so later he'd fumbled a bit and touched the end. 

I immediately gave him a massive grin and massive hug and told him he had been amazing. "Did I come last?" he asked. "Is that ok?" I asked. "Yes, because I really did my best mummy." 

Ok, hold it together I thought.  

As we got out the pool to the same round of cheers and congratulations that every single swimmer got, Anthony squinted as he took of his goggles. He was shivering and I grabbed his towel (I hardly noticed the cold, I was so hyped). I looked around and thought how amazing my son was. 

Yesterday I'd been a bit iffy when I went to the pool, but the things that bothered me are things Anthony as a child with ASD, ADHD and SPD overcomes every single time he goes swimming. The piercing bright lights, the cheers and echos, the cold water and strong smell of chlorine. 

He's not only learned to swim, he's learned to cope with all these sensory battles, learned to cheer and feel pride in the accomplishments of others and learned that doing his best is more important than winning.  

I could barely be prouder of my last place boy.  What was the last thing that made you realise your kid is just amazing?

Our blog - A lead pipe, a ball and a pair of feet
Our blog - Autism and the misunderstandings of empathy

External Links
NAS - Sensory

Wednesday, 10 February 2016

#WonderfulWednesday: An apology to my autistic students

I've started #WonderfulWednesday, where I take a break and share a wonderful post, meme, quote etc from my last week online.

An apology to my autistic students, by Someone's Mum is a wonderfully honest post about how having a son with autism has made this teacher understand that she didn't 'get it' before.  She was trained to manage "the perceived ‘symptoms’ of autism", but in her experience as a parent she discovered  how unprepared she actually was.

There is no doubt that having an autistic child changes your perceptions of many things. And then there is the realisation that all your knowledge is great, but really you only know one autistic child, or two or three depending on who you are or what you do. And I don't really know what it's like even when I try like in Gale winds and a low sun - is this what it is like for my autistic sons?

An apology to my autistic students captures such a realisation, I'd recommend it if you haven't read it already.

Tuesday, 9 February 2016

Beautiful Belle has a point about books for autistic kids

Girl reading Beauty and the Beast

It's not uncommon for Disney characters to appear to have the odd autistic trait. The little mermaid was obsessed with the human world and Rex from Toy Story doesn't like change for example. But maybe the most common similarity is characters who aren't understood by others, like Belle.

Monday, 8 February 2016

Makeshift Birthday ball pit is a sensory success

Ball pit

Birthdays can be a real mission in our home. It's hardly surprising when two of your kids have Autistic Spectrum Disorder (ASD) so have difficulty with social/communications skills and you are also trying to feed and limit their senses according to their needs. 

Friday, 5 February 2016

Favourite Friday: SEN: Accessing a specialist unit or school

You already know your child will need extra support at school. The question is what type and where it is best for them to have it The preference is always for your child to go to a regular mainstream school if this setting can meet their needs, but that's not always possible. We knew after our experience with Anthony that his brother, David, would need a specialist unit, so what did I learn about getting him into one?  Read more ...

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

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Thursday, 4 February 2016

Apple strudel is ample for motor skills

This week at Kiddy Cook, Anthony made a great kids apple strudel. Along with the lovely songs and details about the ingredients that he learned, this recipe also provided a great opportunity for children to practice their bilateral motor skills.

Bilateral motor skills are ones that require you to use both sides of your body in coordination with each other and is often something kids with autism and other conditions struggle with. In this case, the simple recipe required cutting apples and butter into several small pieces.  This means holding the fruit/butter with one hand and slicing with the dominant one. 

You could use a red safety knife, this will encourage movement skills as you need to use a saw like action to cut through the fruit and requires less pressure than a conventional type.  If your kids need more help with learning to apply pressure then a plastic knife would give them this practice. You could also try using Easigrip scissors.

The recipe includes a teaspoon of sugar.  If your kids don't need or react well to it then don't use it.  We didn't use this and instead had 1/4 sweet apple like golden delicious and 1/4 cooking apple as this makes the filling plenty sweet.  If you don't like mixed textures, miss out the sunflower seeds. 

For final tips,  make four strudels. The would use a two whole apples and nearly a whole sheet of pastry. Finally keep the pastry on the grease proof paper, then no need to worry about dusting and it can go straight in the oven! 

Overall, he had a great time at Kiddy Cook, loved this recipe and all the kids enjoyed eating the finished product.

Kiddy Cook/Cookie Tots -

As listed on:

Mr and Mrs T Plus Three
Monkey and Mouse

Wednesday, 3 February 2016

Without an ASD diagnosis, we would not

It appears we are some of the lucky ones. Our boys were both diagnosed with ASD by the time they were four years old and they both received appropriate support from services, organisations and in their different school settings.

Tuesday, 2 February 2016

Wellies, make me think SPD

It may have been a bit damp outside yesterday but it wasn't really cold. Instead of being locked up in the house a couple of the kids went to lend a hand cleaning and clearing up in the front garden and garage. 

The grass and bushes were still pretty wet and after a while Jane had stomped around enough for Daddy to holler inside,  "I think wellies would be better mummy!  Jane go inside and get your wellies on."

As I approach the front door, Jane is stood on the porch with soggy looking shoes and her bottom lip sticking out. "Shhhh, but I don't want to wear wellies. They make me fall over." 

I tried not to smile at the fact that she had tried to hide her confession from her dad. I opened the door wider and asked her if she had finished playing outside or not. Sensibly she came in and we popped her shoes on the dryer. 

But her adorable confession reminded me of the difficulties the boys have in wellies.  David in particular won't wear them.  As part of their autism both the boys have sensory processing disorder (SPD). If affects them both differently. 

David finds his level by spinning and squealing a lot. Anthony likes to jump but his biggest issue was falling over. We were in A&E twice before every cornered and edged piece of furniture was fitted with bumpers. Wellies were difficult for him too. They were just too awkward to work and required a bit more coordination than he had in those loose fitting boots. 

David has a slightly different issue. As with many people with autism, David likes routine and sameness. He wouldn't wear wellies because they weren't his normal shoes, they were different. Not surprising really, it took us three weeks to get him to try his school shoes on. 

Of course, for some kids with SPD, wellies would be essential as they might not be able to bare getting wet or cold. 

Both our boys do a bit better now. Happily, a lack of wellies doesn't seem to stop them running around the garden. How do your kids survive the wet or cope with different clothes? 

Monday, 1 February 2016

Please tell me what happens next.... on Ben and Holly?

There are many strange things that happen when some of your kids have autism. One of the things I've constantly had in my head recently is... does King Thistle get out of the cracker, is the Queen rescued from the north pole and what will happen to the Elves and the Great Elf Tree that have got stuck in the garden centre?

This is not something I thought I'd be pre-occupied with.  These are the three questions raised at the end of part one of a two part opening to Ben & Holly's Little Kingdom Season 7, which focuses on Christmas.  I realise it's now just past the end of January and I'm still wondering what happens in a children's two part show, that apparently I could watch at any time. Except of course I can't, and I'm constantly reminded of these questions, day after day.

You see one of the strange things that happens undoubtedly because we have autism in the family is the obsessive re-watching of tv programmes.  Really I'm lucky beause, I've seen the whole of this Ben and Holly episode.  It's just I've never been able to watch the next one.  It has been worse, David used to like rewatching the Sky Disney movies introduction sequence.  This is about 45 seconds (that is seconds, not minutes) and he used to ask for me to rewind this to watch over and over again. It's a hard thing to do mostly because you can't do anything else when you have to constantly rewind the television.  And sometimes like in David's case here, the action is debilitating.  David struggled to pull himself away, transfixed and would become extremely upset if he couldn't watch it.

Every child learns by repetition, so why is this different? Here are some ideas:

People with autism often like samesness - there are no surprises, in fact mykids positively get joy out of knowing whats about to happen, it's safe and comfortable and fun for them

People with autism like routine - watching the same show everyday means there is no chance of anything going wrong and they know what's going to happen

People with autism can find it difficult to know what to focus on, so try and take it all in- David in particular seems to try and take in everything on the screen in absolute detail. David is less likely to know what's going on in the story and more likely to know what everyone was wearing in ever scene. 

Sensory stimulus - Parts of shows can be very visual and this can be very comforting or stimulating for some people with autism. That's why David really liked the Disney introduction, it has music and like most adverts is very visually inspiring to draw watchers in. 

As I say, learning through repetition is something children do. Jane likes to re-watch her favourite shows as much as the next kid, but for the boys it's a bit different.  All in all, I don't mind watching the same things, as long as they aren't debilitating for the boys.   As long as they can stop watching when they need to, like when it's time to leave the house, go to bed or even they need to go to the toilet.  We just need to help them enjoy the television whilst still being able to function.  And that's fine. It might just be nice to know what happened to King Thistle... and the Queen.... and the Elf Tree.  If you've seen the episode let me know?  I'd even be open to a potential ending! 

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