Monday, 30 November 2015

Why sharing shortbread is truly amazing

Why sharing shortbread is truly amazing - sharing hands

Have you seen the episode of 'Friends' where Joey doesn't share food? Joey is going on a second dinner date with a pretty lady and orders an extra portion of fries 'for sharing'. He has adopted this as his strategy to avoid sharing his dinner with his date. If course it all goes wrong as it always does in sitcoms. Joey not only knocks his dinner on the floor, his system backfires when he wants to eat the dessert ordered by his date. Our son David has a strategy that's far less complicated. Try to take food away from David and he might attempt to scratch your cheeks off. That's why I nearly fell over when he handed a shortbread stick to his little sister the other day.

David was diagnosed with autism a bit earlier than his older brother. Possibly this is because we were familiar with some of the signs but looking back I had a gut feeling that David was going to be more affected than his older sibling. All kids find sharing difficult sometimes but just how do you explain sharing to a child who doesn't listen when you talk and has fundamental difficulties in seeing things from another persons point if view. Even more than that and as the Theory of Mind suggests, David may actually expect others to see things from his point if view.

This can be part of the reason children with autism see little point in communicating. David would just go and stand by the biscuit cupboard as he simply expected me to know he wanted a biscuit. After a while, if I didn't manage to guess that he wanted a biscuit then he'd start to get upset. This was particularly the case with things like biscuits or iPads. These are high value items for David. A high value item isn't dependent on financial cost but how much David wants them. These are also items he finds difficult to give up. The only real way to help him learn to cope with going without something is to practice giving it up. Start slowly by offering another high value item in exchange. Then move to switching for a lower value item, like switching a biscuit for an apple. Finally offer help giving up the high value item for nothing, we use a countdown strategy to give David time to deal with loosing what he wants.

We and the school have also recently been working with David in his ability to follow instructions. This has followed something similar to an ABA (Applied Behaviour Analysis) type activity where David has been rewarded immediately when he follows an instruction. Then he is rewarded after following two instructions, then five and then any given number so that he doesn't expect a reward after completing a specific number of requests. I think this work combined with David's greater ability to give up high value items came together when he decided to share his shortbread with his sister.

David had just asked for shortbread by combining the Makaton signs for biscuit and stick. Having retrieved the box of shortbread from the cupboard, Jane his younger sister declared she also wanted one. David had two shortbreads. I asked David to give one to Jane and used the sign for 'share'. I fully expecting him to either ignore me or understand what I was asking and therefore run away or cheat and give his sister a new one out of the box.

But he didn't. He shared his shortbread, straight away without fuss or tears. I could barely believe it. And I reminded myself that if I don't constantly help David to use the skills he learns he won't use them and I won't get the opportunity to be amazed when he does something like sharing shortbread.

Links
Our blog - Theory of Mind, double rainbow and breakfast
Our blog - Conversing about broken gingerbread men (ABA)

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Friday, 27 November 2015

Favourite Fridays: Are my Children in Need of someone better?

There's no denying that being a parent is way more work than you think it's going to be. When the midwife came to see me the day after we took our first child Anthony home she found me still in my pyjamas despite it being nearly noon. Within minutes of her asking how I was I'd burst into tears. Being a mother is overwhelming. Nearly eight years later we now have two boys with autism and a little girl and I still get that same feeling. Sometimes it's during the simplest of circumstance. Read more..

We've introduced 'Favourite Fridays'. Each Friday 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, 26 November 2015

How autism is like the new courtesy car

Having a car is essential for us. Despite living in a place with great public transport links, the reality of living with three very different autistic and neurotypical kids is that we can't operate without a car. We have three school drops and medical appointments to get to. And our son David finds travelling on a bus very stressful. We can't afford to be without the car and so we get it serviced and MOT'ed annually at the local dealership which provides us with a courtesy car. It's been the same courtesy car for years. But this year it was different. 

"It's a Lupo instead of a Juke," the nice lady at the counter said. It's still a car I thought, and there's something nice about driving a shiny new car. I got the keys and went to switch the barrage of things from our car into this new bright orange Lupo. Except, the Lupo is a much smaller car than we are used to and smaller than the Juke we were expecting. My life didn't really seem to fit into it. For a start it's a four seater not a five seater like the Juke I usually get allocated. This meant every seat apart from the driver seat had a car seat in it. My hubby would not be getting a lift to the train staton, he'd have to walk while we had this car. I had to dismantle to buggy beyond all recognition to fit it in and there was no way to adjust the seat so I couldn't really see the front of the car like I could in the Juke. This meant I crawled around everywhere for fear of damaging the vehicle. 

It operated differently to the Juke too. It had this strange auto/manual combo gear box. Flick it the wrong way without noticing and I'd be screeching along stuck in 2nd gear without noticing. There were no parking sensors, but a weird distance thing. So, despite being much smaller than the Juke I felt uncertain about backing out and so went to put the window down to ask one if the guys at the garage to guide me out. But, I couldn't get the window down. I spent a few minutes playing with a switch and eventually worked out I was adjusting the side mirrors. There was in fact a wind down handle right beside me that I hadn't even registered. Thankfully, I was only going to have the car for about four hours. 

After I drove it home, I arranged to take my mum and daughter down to the supermarket. I had just about got used to the new gear box but was most relieved to find a parent and child parking space as the idea of parking this unfamiliar car filled me with dread. 

Once we'd got a few bits at the shop we returned to carpark. It had got colder and had started to rain. I was glad I had remembered to get the keys out to open the door (the other car had a keyless entry). I popped the car into reverse relatively easily this time and was pleased to see that the back windscreen wiper came on automatically. That's nifty I thought. 

An hour or so after we got back home I had a call from the garage to come and get my own car. This was handy as I'd be able to pick up our car before the afternoon school run. I was now fairly comfortable with general operations of the Lupo but driving through the school run and fighting for an on street parking space in the new car still made me nervous.

As I was driving back to the dealership I thought this courtesy car was quite cute really. Different to what I thought I was going to have but it had some nice features too. Even that odd colour choice of orange was growing on me.. a little. It occurred to me how in a sort of way this little courtesy car was not unlike the little boys we had who were diagnosed with autism. 

Our lives and society in general was not set up for our beautiful new sons. They didn't fit into the standard or normal settings without (in some cases) big adjustments. All those parenting books were completely useless because our sons simply don't operate in the same way as neurotypical kids. What seems completely obvious to them is a mystery to me and sometimes vice-versa.  I'm apprehensive about doing anything different or new with them. It's taken a while to get used to how they work but along the way I've found out that they are really special in ways I didn't expect. 

In fact despite always being on edge and not being what I expected, I treasure their differences even though others think what they do is odd. Maybe next time I'll be faster to see the best things in a new courtesy car.  Though I expect it'll still take a while to get used to. 

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Wednesday, 25 November 2015

Generalising dog - autism and language

My mum let our dog, Benjy, out into the garden yesterday. Anthony was the garden too. When it got dark, mum shouted for everyone to come in. Benjy was the last to come back into the house so mum yelled, "Come on dog," into the garden. This was immediately corrected by Anthony, "It's Benjy, not Dog." It reminded me of the difficulties Anthony faced with generalising his language. 

Difficulties with communication, speech and language is a basic symptom of autism. Anthony was diagnosed with autism around three years old, just like his younger brother David. For both our sons, it was the speech delay that first alerted us to their condition.

One of the things that was noticeable with Anthony was when he would use the wrong words for things or not use words that we knew he could say.  Sometimes this was due to difficulties with generalising his vocabulary. Over-generalising can be described as using a word too generally. For example using the same word 'tomato' when talking about a strawberry, a tomato, a pair of socks or maybe even a car because they are all red. Under-generalising is the opposite. This could mean learning that the term 'cup' only refers to one particular cup - perhaps the blue sippy cup a child has at home. If the child was unable to recognise that the other receptacle's with handles used for drinking are also cups too then they are being too specific with the term. The word 'cup' is not being used generally enough. 

Anthony had both of these issues, but the garden incident reminded me mostly of his over-generalising. Initially, all dogs were 'Benjys'. We seemed to manage to explain that Benjy was our dog's name but this seemed to make it worse. The term 'dog' suddenly referred to everything hairy with four legs. This included nearly all the animals at the pet store including rabbits, gerbils and hamsters; the cows and sheep we passed driving to my parents house in Scotland and the horses ridden by the police. Put a furry blanket on top of a table and it might also become a dog. There was something very strange about being told that a dog had chased a dog up a tree and a man on a dog was watching them?

Thankfully, we've come to understand these issues and try to head them off before they occur. Early on using Makaton signs helped us label different items effectively. We can point out the difference between items such as a car and a bus so they are registered as different terms. This is best explained immediately when a new word is introduced.  However, we aren't always there when this happens. Anthony learnt the word 'pathetic' from someone the other day. Without really understanding the meaning of the word, it has been immediately over-generalised so everyone is 'pathetic'. He might have some interesting conversations at school today! 

Links
Our Blog - Anthony's always aloud

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Tuesday, 24 November 2015

Comments from Steve Silberman on Neurotribes, our different 'autisms'

It's been a week since Mumsnet invited Steve Silberman to join them for a webchat on his book, 'Neurotribes: The legacy of autism and how to think smarter about people who think differently'.  His book examines the history of autism and looks at why there has been a recent rise in the number of diagnoses. It recently won the 2015 Samuel Johnson Prize for non-fiction and became a bestseller in England just over a week ago.

Honestly I don't get much time to read.  However, I was particularly interested in part of it's review that I read.  It described how the book starts in Nazi Vienna with Dr Hans Asperger.  He downplayed the severity of the newly named syndrome and highlighted highly functioning patients in an effort to save the rest from the Nazis' euthanasia programme. By definition this hid the fact that autism exists on a continuum. The term "spectrum" was adopted some 50 years later by a British psychiatrist.

After our first son was diagnosed with Autistic Spectrum Disorder (ASD), it occurred to me that the spectrum could reach as far as anyone would diagnose.  It's not unusual for relatives of those diagnosed with autism to demonstrate 'autistic traits'.  Expand the spectrum far enough and we would all be on it somewhere.  However, you would only need a diagnosis of ASD when you were at the end of the spectrum that made it difficult to function in society.  Indeed that society simply had a cut off point which most people fit into and it therefore catered for.

Our sons are both on the autistic spectrum, but are wildly different.  Anthony is verbal and attends a mainstream school with a full time learning support assistant.  He is very routine driven and struggles with change and decision making.  David is non-verbal, attends a specialist unit attached to a mainstream school, is fine without routine but really struggles with transitions. Both on the autistic spectrum, but both very different and with different prospects for the future.  Even their similarities can be different. Both have sensory issues around temperature for example.  Anthony is very sensitive to temperature, however, David hardly notices it.  We always have to put Anthony in the bath first - he'll tell us if it's too hot.  David would get into the bath if it was too hot and hurt himself.   It sometimes seems that they are too different to both be considered autistic. Just a few years earlier and I think they may have been given a slightly different diagnosis from each other specifying their place on a scale.

And so like a few others, I was interested in the question posed to Mr Silberman - is it not autism, is it in fact autisms?  Here's was Mr Silberman's response:

"It's important to remember that "autism" is basically a useful social construct (and sometimes not so useful). It's a description of a distinctive constellation of behavior that ranges incredibly widely. But it's not a reference to a biomarker or any other thing that exists outside of the autistic person's behavior.

"That said, I think the evolving wisdom among researchers and clinicians is that there are many 'autisms' -- underlying conditions, with probably widely differing etiological pathways (causes, if you will) -- that produce this distinctive and widely ranging constellation of behavior. I understand that parents of profoundly affected and intellectually disabled children often bristle at the notion that their child is on the same broad spectrum as, say, Temple Grandin. In my book, I write quite a bit about profoundly disabled autistic people, such as a 70 page chapter on a boy named Leo Rosa, who has very few words of expressive language and is occasionally self-injurious. I notice that some people seem to miss the profoundly disabled people in my book, though I talk about them in nearly every chapter. I wonder if it's because they're rarely quoted (though I do quote Leo), or if it's because people would rather talk about eccentric geniuses. But they're there."

Our son's certainly differ widely enough to adhere to this idea of 'autisms' and support the old adage that 'if you know one person on the autistic spectrum, you know one person on the spectrum'. 

There is recognised growth in the number of ASD diagnoses.  I have noticed an increase in 'friendly' services, such as autism friendly viewings at the cinema or theatre, specialised shopping trolleys, autism friendly days at museums and even at toy stores.  Given this I wonder if the part of the spectrum in which individuals are able to cope and function in society will broaden?    If there were 10 autisms today could this be reduced as time goes on? Is it possible with a greater acceptance and expansion of services that one or both of our sons may fall out of the need for a diagnosis altogether?

Undoubtedly I will have to read Mr Silberman's book which ultimately "casts light on the growing movement of 'neurodiversity' activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences." How much change there would need to be to enable both my kids to participate in society is as yet unknown. If you've read my post 'The hope I see in the kind acts of children' you will know I see signs of a greater acceptance for their conditions and that I have high hopes for their future. 

Links to positive acceptance

Monday, 23 November 2015

Potato handler and crumble creator - autism and interaction in the kitchen

Potatoes by a pan

We don't often do roast Sunday dinners in our house. We used to do them a lot but then there was a period of time when it just became too difficult. Not only were the kids not taking part in the dinner but they required constant assistance to stay off of one another, entertained or safe. There was almost a shift system and someone was always away from the table. Recently though whatever combination of child development stages led to this 'no Sunday roast zone' we had entered seemed to pass. And to my absolute delight our autistic five year old was actively interested in the return of our Sunday dinner preparations.

I don't think twice when Jane wants to 'help' me sweep the floor or do the vacuuming. My husband may not believe it but I do these jobs at least once most days. Jane has been 'helping out' for at least a year and she's only two and a half years old. It's because she is interested in interacting with me and her environment. She is not stressed by the noise of the vacuum cleaner or anything else on the house. We've been baking together for at least a year too. But it's not the same for David.

David has been diagnosed with ASD since he was three years old. Sometimes he cannot, and other times he may decide not to, interact with the world around him because he finds it too confusing or because it seems pointless. Let's face it; lots of people prefer to play on their IPads than engage in an actual conversation with someone. As David's verbal skills are very limited, I'm hardly surprised he is sat on the sofa while I'm peeling potatoes on the floor. One after the other the cleaned potatoes from the colander are peeled over a large bowl and then placed into a big pan to on the hob later.

 Jane has already asked what I'm doing a few times and after being satisfied that the game of flying to the moon she is playing is better than my activity, I'm left alone for a few minutes. Then David comes to sit opposite me. His first task is to investigate the potatoes. They are all emptied out of the colander and checked over before going back inside. David then looks at me for a bit before turning over and looking at me through his legs. This is one of the ways David likes to look at the world. Then as I'm finishing peeling a potato I use Makaton to sign 'potato'. He jumps up and hands me another one from the colander. "Thank you" I sign and say. But my grin is far more than a 'thank you' smile.

David returns to play with his IPad but spends the next 15 minutes guarding the colander from any would be thief and almost to the second, jumping up and handing me potatoes until they are all gone. Each time I am thrilled.

After I'd finished making the rest of the Sunday Roast, I started on pudding - rhubarb and pear crumble. David wonders into the kitchen and sees me measure out the ingredients for the crumble. I'm beginning to break up the butter and crumble it into the flour and sugar just like my mum taught me. Then David leaned up onto the counter and stuck his hand in the bowl to feel the texture and see what I was doing. Again I use Makaton to ask David if he wants to 'cook'. He seemed interested, so I immediately brought the bowl down onto the floor and David and I shared the bowl while he copied me pushing the butter through my fingers and into the flour and sugar.

This type of shared attention is so rare. It requires an interest in people, activities and a preparedness to share them with someone else. This is really difficult and new for David as it means seeing things from another person's point of view.

Honestly, if there had been nothing else to do I'd have peeled potatoes and made crumble all day. The crumble proved to be more fun than handing over potatoes and David was a bit disappointed when I finally needed to pour it over the fruit. And despite his valiant efforts, he didn't have roast potatoes or crumble for dinner as neither is yet in his acceptable food repertoire. But I saw a little boy excel himself. And I saw hope for independent living skills in my son. What a great Sunday roast I had this week.

Links
Our blog - Racing Clouds - David's Delight

External Links - Communicating and Interacting

Thursday, 19 November 2015

Favourite Friday: Anthony's two minute silence 11 Nov 2015

If you've read 'Anthony's always aloud' you'll know that our seven year old son with ASD is always on maximum volume. His whole being is set up to move about and make noise. He is constantly balancing his sensory system and moves about so much he's currently also being assessed for Attention Deficit Hyperactivity Disorder.  This is also in recognition that he has difficulty focussing, listening to instructions and remaining on task. But on Remembrance Sunday he stunned his whole family by coming back from his club with a reward for being the quietest and most respectful during the two minute silence. Read more...

We've introduced 'Favourite Fridays'. Each Friday 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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Please note this post has been amended to include notes on how to help children on the autistic spectrum cope with world event's following the Paris attacks last week.

Our mummification mishaps - autism and dressing up at school


Anthony's school topic of this term has been the Ancient Egyptians. Anthony's class have been busy writing about pyramids, discussing Pharaohs and making paper mâché mummies. The highlight was a dress as an Egyptian day and workshop yesterday. Or at least, I think it was.

Anthony is seven years old so has got used to the idea of going to school sometimes in either his 'normal clothes' or something else. As a child with autism we initially took a lot of time to prepare him for a change in his routine like coming to school in different clothes. Now we can give Anthony a days notice that it's a 'special' day at school when he can wear 'normal clothes' or a costume. Anymore than a days notice and Anthony can end up focussed on this change to his routine instead of the activities of the day.  It's probably a bit like the distraction that can be caused by knowing you have a test coming up. 

We used to ask Anthony what he'd like to dress up as.  We've come to realise that this often adds pressure to the day. Anthony finds making decisions very difficult so we'll make suggestions. This relieves some of the pressure and unpredictability in the outcome for him.  More often than not Anthony would be glad of the suggestion and this is what I had expected for Ancient Egyptian day.

During the explanation of Egyptian Day on the way home from school the night before, Anthony suddenly declared he'd like to go as mummy. I was delighted that he had expressed an opinion. However, it meant I'd have a come up with a mummy costume. Usually we'd try out Anthony's costume to give him time to adjust and know what to expect. So, I got out clothes I thought I could adapt and showed them to Anthony and let him know I'd add bandages to them for the morning. I spent a good chunk of the night sewing white ribbons onto clothes. 

In the morning everything went as normal until it was time for Anthony to get dressed. His face dropped, he looked hot and his eyes became all glazed. "There aren't enough bandages on the trousers mum," he said. 

The morning routine is fairly regimented. The routine is consistent and avoids down time distractions so there isn't a lot of time for things like fixing fancy dress costumes. As I looked at Anthony I could see the panic on his face. His costume was not what he expected. It's not the same as Jane being disappointed that her snack is a banana instead of an apple like she'd wanted.  It's a completely different level. It's like a fear of things not being right. Sometimes we can help Anthony deal with this fear but looking at him I could tell this wasn't the best course of action. As part of his routine, Anthony gets dressed before breakfast so has to have his breakfast fully clothed on school days.  Given this, I told Anthony I'd fix his trousers after he'd eaten. As Anthony made his way to the breakfast table he calmed down "Thanks mum, 10 bandages would be enough."

Time was of the essence.  Obviously I'd run out if white ribbon, and the actual bandages from the medicine box were useless. As I began just trawling through washing for a clue I remembered we'd recently torn up an old white work shirt for cleaning cloths. Three safety pins later and Anthony was back on course again.  He was very excited and extremely bouncy.  It would have been easy to assume that this indicated he was all set for the day but I know different.  His excitement and bounciness could indeed be part joy at the fun that was lined up for the day.  However, I suspect he was also coping with the nerves and anxiety at the differences it would mean. 

We are really delighted that Anthony can take part in these activities at school.  Every time he copes with something new or a change to his routine is a chance for him to develop and use strategies to cope with it.  This type of skill could really help him when he gets older and allow him to be independent. Anthony seemed thrilled after school. He wanted to keep his costume on all evening and we had to get changed back into it even after his swimming lesson.

As for decision making, we are still working on that.  We have an appointment next week with some professionals to help Anthony with strategies to make decisions himself.  Despite his apparent keenness on his mummy costume, Anthony collapsed this morning because he changed his mind saying he wished he gone into school as a Pharaoh and not a mummy.  As he was still coping with yesterday, it's just as well we have that regimented morning routine to keep him focused.

Links
Our Blog - Disastrous at decision-making

External Links
NAS - Routines and  change

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Wednesday, 18 November 2015

Racing clouds - David's delight

Today is a bright and blustery day.  But, generally it's been particularly stormy over the last few days.  There's been a lot of grey skies, and at night there have been some high winds. As I'm stood waiting to collect David from his school yesterday, I'm sheltering between a wall and a large minivan. It's not too cold but the sudden gusts seem pretty chill some. My squeaking son gets brought to the gate and while I'm huddled up and face down, he's bright eyed.  As I pick him up, he is extremely happy. We always encourage him to say goodbye to his teachers.  As I go to encourage his eye-contact with the teachers I see he's loving the weather. In fact for a few moments its almost impossible to stop him looking at the clouds.

In 'Sporting red plastic belt accessories for the holidays' I wrote about how both our autistic boys, Anthony aged seven years and his younger brother David aged five, are sensory seeking with relation to the sense of touch. They are hypo-sensitive or under sensitive to touch and so seek it out as a way of balancing their sensory system.  They are also both hypo-sensitive with their sense of sight. This means they seek visual stimulus. For example Anthony might wiggle his fingers near his eyes and David likes to look at objects from odd angles. It makes their visual experience more interesting. Some people with autism use this as a way of calming and balancing their system.  Some trains of thought also believe the intensity of the stimulation is  enjoyable.

We can all imagine something we 'like' to look at. The pleasure of a beautiful painting maybe, baby animals, autumnal trees?  But if you are one of the people that loves to watch as the leaves are blown off the trees to the point of not being able to look away, then you might get the idea.  Possibly you enjoy looking at beautiful flowers?  The best part of a bunch of flowers for me is the smell.  I could stand and breath in beautiful smelling flowers for at least a minute.  And that's probably the closest I come to this feeling of sensory satisfaction.

David was intensely watching the clouds.  It was only as I looked up at them that I saw how lovely they really were.  They were a variety of shades spanning  everything between periwinkle and ash blonde.  And I became aware of how fast they were moving.  It was like watching the people who walk on the travellators in airports. And I thought, how beautiful. David literally squealed with delight.  And then with a little more encouragement he looked back, waved goodbye to his teachers and skipped away with me.  

Once I'd retrieved the rest of the children it occurred to me that of the 1400 children and adults that were at the school at that moment, my son and I could have been the only two people to have enjoyed the sky right then.  In that moment, there was nothing that David found more enjoyable than to breadth in the sky. In some ways I wish I'd had more time to look at them with him.  My son may see the world differently to other kids but what he sees is amazing.

External Links
NAS - Sensory

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Tuesday, 17 November 2015

Why my chatterbox goes to Makaton classes


Jane is only two and a half years old.  She's doing great.  Coming back from her new nursery, where the teacher described her as Little Miss Independent, Jane can tell me about her day and what she wants for lunch.  She started talking earlier than her older siblings.  In fact, she started talking a lot earlier than her siblings.  That's why after we've had whatever compromise we came to for lunch, Jane and I are going to a pre-school singing and signing class. 

I've been going to Singing Hands classes for years, well before we had our beautiful little daughter. We started going when Anthony's speech seemed delayed. As is often the case with siblings, when his younger brother David was born he also came along for the ride. At this point we had no idea that by the time David was five years old, Makaton sign language would be his primary means of communication. 

Initially the only noises David made sounded more like bird calls than any kind of speech sounds at all. Following various sessions at the speech therapist we started two forms of AAC. Alternative and Augmented Communication either replaces (alternative) or works alongside (augmented) speech. Makaton signing supports speech. It's not like British Sign Language where people can communicate in audible silence; Makaton is only used along side words. And this is how David uses it.

Jane though can't stop talking. Most of the time she uses a good sentence structure too. I don't know whether going to Singing Hands helped her talk early. Or maybe it's because she got a lot of second hand therapy as she spent a lot of time with David and I before David started full time school this September. She definitely enjoys the classes though and I think it was quite good at expanding her vocabulary.

What I do know is that there's a much greater chance of her being able to communicate with her brother if she picks up Makaton too. Going to the classes sometimes means we don't go to the playground in a sunny afternoon or that we'll have to put off baking a cake.

One thing's for sure though. The first time I see Jane and David communicating in a way that's not just a game of rough and tumble tag, I'll have a massive smile on my face. 

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Monday, 16 November 2015

Are my Children in Need of someone better?

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Friday, 13 November 2015

Favourite Fridays: Freezing during Frozen - Makaton in action 3 Nov 2015

It might be starting to get cold outside by that's not why I'm freezing.  Nor am I upset by a scratched disc acting up or poor streaming of what must be the favourite song collection of many young girls. I'm not upset at all.  I'm having fun whilst repeatedly freezing my body during a Disney's Frozen song because it's making my son talk. Read the full post ...

We've introduced 'Favourite Fridays'. Each Friday 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, 12 November 2015

Disastrous at decision making

boy trying to climb


A report released today by the Kings Fund reports that mental health patients are at risk due to budget cuts. I've been listening to Radio 5 Live about it. It occurs to me that many people may not know that quite a few mental health conditions are comorbid with autism - that is that they are common occurring conditions. Phobias, depression and bipolar disorder are often described with autism, in fact 70% of people with autism experience some type of mental health issue.  Studies have shown that in individuals with autism about 30% have Obsessive-compulsive disorder (OCD) and anxiety disorders in children with ASD has been reported to be anywhere between 11% and 84%. 

Our son Anthony is seven years old and was diagnosed with ASD three years ago. As he has developed and grown we have noted that some of his issues are not simply ASD and he has a few comorbid conditions.  We have recently been referred to the Children's and Adolescents Mental Health Services (CAMHS) for an Attention Deficit Hyperactivity Disorder but more because we found him becoming anxious about making decisions or decisions he had made.  It wasn't really until we were referred to CAMHS that we considered he could actually be suffering from a form of anxiety.

Anthony can have difficulty making the most basic of decisions.  Do you want to go to the park; would you like vanilla or strawberry cream, would you like to sit in the front seat or the back seat of the car?  Anthony just can't decide and he very quickly becomes very anxious about it. His voice becomes short and he seems to sort of shake.  Imagine having to make all these decisions for your child because they can't cope with it.

Anthony and the other kids from his class at school get sent home with reading books.  When they have finished with the book they take it back to school and swop it for a new one.  Last night we finished a book and asked Anthony if he would like to take it back to school to get a new one OR keep it and re-read again.  This simple decision completely floored him.  Pressing him for a decision only makes the situation worse.

Anthony can also regret decisions he made years ago or decisions that were made for him.  Out of the blue he'll cry and say that he was 'wrong' and he did want to go to the cinema and not the playground.  On investigation he'll be talking about a decision he made months ago.

We are due to see CAMHS next week to help him and us provide strategies to help him with this.  In the meantime, we are trying to give Anthony notice of when he's going to have to make a decision. Time to process what it is and help him by talking through his worries and about repercussions of his decision to relieve anxiety he may have about this. If you have any experiences we'd love to hear them.

Links
Our Blog - Hyper what else?  Anthony's comorbid conditions

External Links
This post has been shared with the My Discombobulated Brain

Wednesday, 11 November 2015

Anthony's two minute silence

If you've read 'Anthony's always aloud' you'll know that our seven year old son with ASD is always on maximum volume. His whole being is set up to move about and make noise. He is constantly balancing his sensory system and moves about so much he's currently also being assessed for Attention Deficit Hyperactivity Disorder.  This is also in recognition that he has difficulty focussing, listening to instructions and remaining on task. But on Remembrance Sunday he stunned his whole family by coming back from his club with a reward for being the quietest and most respectful during the two minute silence.

Anthony attends an extra learning club two times a week.  It's a mainstream club but the staff there are very aware of his additional needs.  We send Anthony here to give him a chance to repeat some of the learning at school.  As routine works well with Anthony, we usually go at the same times each week, Thursday directly after school and when the club opens at 10 o'clock each Sunday. These tend to be quieter time of the week and give him the best opportunity to be focussed and get extra help if he needs it.  The sessions last an hour with a 15 minute break.  It's more school work so as you can imagine it's not always a very popular activity.  He has struggled a few times recently and we have been encouraging him to 'do his best' with a reward regime.  A good week (including the time at his learning club) gets a reward. This includes his three areas to focus on; doing good listening, good sitting and good working. Last Sunday was Remembrance Sunday which falls on the second Sunday in November.  A two minute silence is held at 11am to remember the people who have died in wars.  And so it was that at 11am on Remembrance Sunday Anthony was at his club.

At just after 11am, my husband went to collect Anthony and at 11.30am he walked in with a big grin.  "Mum, I was very good today," he said. He told me that he had been given an extra reward at the club for being the quietest during the two minute silence. I could barely talk myself. I was stunned. How? Wow! Well done, I thought.

Unfortunately it's also a bit difficult to understand from Anthony exactly what happened and how he managed to stay quiet and still. Communicating difficulties is just one of the traits of his ASD. His father explained the significance of the two minute silence to him using simple language to help him understand.  However, it's difficult for Anthony to understand some concepts via just talking.  This is why we do things like take Anthony to the Imperial War Museum in half term and look at pictures in books.  We also explained about our family members who serve/d in the forces. Whilst he was possibly more motivated by his potential weekly reward and remembering his areas of focus, I'm still amazed that he managed to follow instructions to be, and then actually follow through to being still and quiet. I'm even more thrilled that he's gaining a greater understanding of Remembrance Day and how to act in situations.

Remembrance Day or Armistice Day, marks the day World War One ended, at 11am on the 11th day of the 11th month, back in 1918. It's just after 11am, and I'm full of hope that Anthony will have been able to show his respect again at school today as he did on Sunday. And hope that in the future he will be able to grasp the true meaning of the day.

Links:
Our Blog - Issues when Anthony's always aloud

External Links
Additions: Explaining the pain in Paris to your autistic child
Autism Speaks - Explaining a tragedy to a child with autism

Guide: What is Remembrance Day (CBBC)
NAS - Sensory system
Ambitious About Autism - routine

Tuesday, 10 November 2015

The hope I see in the kind acts of children

Performance has always been difficult for Anthony.  The pressure of a spectacle, the potential of failure and the large number of people are a lot to cope with.  We've always been very proud of Anthony's effort to participate in his class performances but I've noted that it's not only his increased ability to cope with summer concerts and Christmas plays that gives me hope for his future.  It's the actions of the other children too.

Anthony's difficulties with performance stem from the various aspects of his conditions.  Like most people with autistic spectrum disorder (ASD),  Anthony can see the world as a mass of people, places and events which he struggles to make sense of, and which can cause him anxiety. Like many other people with autism, Anthony copes using routine and is concerned by changes to this. He can be worried about making mistakes to the point of not being able to move on, sometimes grieving over mistakes or decisions months later.  Social situations, people and being in the spotlight can make him uneasy. 

In addition to this, Anthony has sensory processing difficulties meaning he could be caught out by loud noises, bright lights or being uncomfortable on a wooden bench.  Anthony is also being assessed for Attention Deficit Hyperactivity Disorder.  This is because he struggles to pay attention and can't stand or sit still for anything longer than a few minutes. Given all this, it's easy to see why participating in a 30-45 minute performance at school is a challenge for him. He has taken part in all the class performances since starting at school and to our delight has become more comfortable with this over time. 

During this year's school summer concert, Anthony went onto stage with his whole class to sing a song about the sunshine.   Despite knowing all the words to the songs and being able to sing them on his own, whether that be in the car or whilst jumping on the trampoline, it's too much for Anthony to think about to join in during the actual concert.  We were delighted to see him join in all the actions and could see his enjoyment in the participation. The song finished and a few members of his class played out a short dialogue at the front of the stage.  Anthony started to fidget a little and started to look around for something else to focus on. The children finished their dialogue and the class started to walk in lines off the stage.  Anthony looked about, unsure of which way to go or follow and that's when it happened. One of the last girls on the stage turned to follow the line.  On her way she gently took hold of Anthony's hand and carefully led him off stage.  Thank you little girl.

Last week was Anthony's class assembly.  The whole school and parents of Anthony's class watch as they report via songs, examples and stories on what the class have been doing during the term.  Anthony had two lines.  One he knew very well and the second he found a bit more difficult.  He made a little mistake in his second line and we were very proud to see how he was able to cope with this and correct his error without becoming upset.  A few years ago, he would have really struggled with this incident. Towards the end of this performance, all the children held up identical models they had made during the course of the term.  Anthony, having completed his solo parts, had by this point lost a bit of focus and was looking around, a bit panicky as all the children started to do something.  But the little girl who sat next him picked up his model and gave it to him.  She then gestured to Anthony to hold it up and he did.  Thank you little girl.

These two little girls give me hope.  Our other son, David, is in a specialist ASD unit attached to a mainstream school.  We don't know how Anthony or David will develop or how/if they will be able to live, work and operate in society in the future. One thing is for sure, in these two little girls I saw the kind of care and respect that will only help our sons in that endeavour.  

External Links
NAS - Routines and resistance to change
NAS - The sensory world of autism

As featured on:

The Twinkle Diaries

Monday, 9 November 2015

Understanding autistic siblings - it's starting with sleep


Many kids with autism have sleeping difficulties.  We've been dealing with them for many years.  In '5 tips to get more sleep when you have autistic kids', it seemed that one of the hardest things to deal with when you have autism in the family is exhaustion. There are many suggestions for helping kids with autism sleep. Sensory aids such as weighted blankets, routine changes or in some cases melatonin supplements.  Our son David was diagnosed with ASD when he was nearly four years old. I can count on one hand the number of nights he has slept through the night. But it's not just David and I that suffer from a broken night's sleep now.  It's also our youngest neuro-typical daughter, Jane.

Thursday, 5 November 2015

Preparing for fireworks with our autistic kids

Loud noises, bright contrasts, sudden changes of direction and usually lots and lots of people.  While being in an unfamiliar place, open to the elements and in the dark.  None of this bodes well for our family with autism as we approach Fireworks night. Here are our do and don't ideas for coping.

Do set the scene - let's make sure the kids know what we are doing. We can use Makaton or visual pictures of fireworks and point and label them when we see or hear them in other places.  Go to a 'late' display, one that's towards the end of the week. This gives opportunities to see and hear fireworks just days before the actual event.  Our eldest is also helped by knowing what day and time when he can expect to see them. If it's possible visit the site of the display a few evenings before.  It won't look the same but at least the route/place may be more familiar. Doing this prior to the night gives our family the chance to process what fireworks are before experiencing them on the night.

Do prepare for coping with sensory overloads - Every child is different, and every child with autism is different. Loud noises can be reduced by ear defenders and you can get some good ones for kids.  Other children may prefer a 'blocking out' noise.  Headphones playing favourite songs might help.  Our younger with ASD, David, will hold the IPad to his ear.  This blocks out the noise of not only the fireworks but all the babbling people. Anthony's comment that inspired this blog's title "Rainbows are too beautiful. I just can't look at them." relates to visual overload.  Individuals with autism often experience senses differently.  Anthony could wear a skipped hat, so he could easily block out some of the fireworks sights if it becomes too much for him.  You don't have to be close to enjoy the fireworks - we watch from a distance.

Do prepare for stress - Take with you whatever relieves stress for your child, a chew toy, a fiddle toy or a large variety of snacks.  Make the experience as comfortable and stress free as possible.

Don't forget safety - Some kids may be able to take in a simple safety briefing. We can use simple PECS cards with crosses on them about what not to do.  If we were to take David outside, it would have to be in a buggy as we couldn't risk him running away in the dark or in a crowd of people.

Don't create pressure - We never worry about leaving somewhere if it's not working for us. Despite the time and thought gone into preparing and getting to the fireworks display, there is no pressure for the kids to have to deal with it or wait it out.

What does this mean for us? A few things.  For the last few nights I've been pointing out fireworks when we've been near displays or heard them outside the home.  I've talked to David about the fireworks display picture he made at school. We've let Anthony know we can go to a fireworks display tomorrow.  We have decided to try to go to a display Anthony has seen before. We will be taking Anthony's ear defenders, and at least one if not two full charged IPads for David. We will aim to get there a little early. We will have a large box of flapjacks in the car.  Did I mention the car? We will most likely be watching from a parked car.  When we bought our car, little did we realise how useful the panoramic glass roof would be for watching Fireworks.

And after all the planning if we don't get there, we leave after a while or stay till the end of the display, we know we've given the kids the opportunity to see the Fireworks if they would like to.  We can always go home and watch fireworks or something else on the television instead. 

External Links
NAS - The Sensory world of Autism
Makaton - Fireworks symbols and signs
Communication Matters - PECS




Taking an 'Are you on the Autism Spectrum?' test

word autism

Every now and again, there is a test published to help the reader see if they might be on the autism spectrum.  Often they coincide with an article on the subject.  Last year published research showed that parents of autistic kids often have autistic traits too.  Most times that I see a test like the one in The Telegraph online yesterday, I can't help but fill it out or at least peruse the questions.

Wednesday, 4 November 2015

Such small achievements that no one else notices - Autistic Anthony Skiing


Anthony needs extra help to participate in a lot of activities.  When he was diagnosed with autism aged 4, we started to understand why Anthony found some things difficult.  Why he had to put the coloured pencils back on their box in the same place, why he didn't seem happy with surprises on his birthday and why he couldn't focus in a nursery full of other children, loud sounds and bright lights.  But that has never meant he can't try something new.

Anthony is helped all day in a mainstream school by a dedicated teaching assistant. He has learned to cope with being in a class with 29 other children.  We did try him at some mainstream clubs, like an after school running club, but found that he didn't really want to participate in them.  It's not that Anthony, didn't like running, just he found it difficult as part of a club.  Often we've arranged for Anthony to have a one-to-one support or lesson for new things he'd like to try.  This and our preparation has meant he can do things.  He goes karting, is currently learning to swim and this week, had his second skiing lesson.

Look, Anthony, the seven year old with ASD and those hypermobile legs is going skiing at a local snow centre. But that's not the achievement I'm focused on. I know Anthony can slide down a learner slope with the occasional fall. What I'm proud of, no-one else noticed. 

Our ski lesson was due to start at 1.30 and was going to be with the same disability guide that Anthony had for his first lesson, a guy called Rick. However, there was a last minute complication and due to this a replacement instructor came but due to the short notice was going to be late. Laura, the new instructor came at 1.50. She had not been able to contact us to say she was coming or late. 

Anthony had not been prepared for any of this. Within minutes of arriving he was asking, "Where is Rick, where is he ?" I could hear the anxiety in his voice. "What time is it, I don't want it to be late."  
Anthony struggles with change. Unpredictable things don't feel safe.  I distracted Anthony by taking him to get his rental gear. We got him dressed and got his boots on. This was the systematic preparation he was expecting. During this time I reassured him that it was ok if the lesson did not start exactly at 1.30. He would still ski as he expected. Then Laura arrived instead of Rick.

She introduced herself to me and before she spoke directly to Anthony, I got down on my knees infront of him and held his hands. This gave him some focus and comforting pressure as I told him that Rick couldn't come and Laura would be helping him for the lesson - everything else would stay the same but someone else would be helping him on the slope. 

No one noticed that Anthony calmly put on his ski gear. No one noticed as he looked at his feet and flicked his fingers while be coped with the change.  No one noticed the pause as he processed a different person, and as he worked through all of what I was saying to him. No one realised the extra time he took to walk around in his boots or to answer questions was anything other than a child having fun or not listening to an adult. But I did. 

As he did one last circle round the bench  to 'make sure his boots' felt right. I knew he was making sure he felt alright. He told me Laura looked a bit like his swimming instructor, then took her hand to go out onto the slope. 

External Links
Racing with Autism - Amazing story and appeal of Austin and his karting

As listed on:

Life Unexpected

Tuesday, 3 November 2015

Freezing during Frozen songs - Makaton in action

It might be starting to get cold outside by that's not why I'm freezing.  Nor am I upset by a scratched disc acting up or poor streaming of what must be the favourite song collection of many young girls. I'm not upset at all.  I'm having fun whilst repeatedly freezing my body during a Disney's Frozen song because it's making my son talk.

As you may know, David was diagnosed with Autistic Spectrum Disorder (ASD) in 2013.  He is now five years old and has made good progress. He communicates using a mix of verbal sounds, PECS and Makaton. We have found that Makaton allows us to communicate in different environments or in new things where we might not have our PECS set up.  'Gap filling' is one of the classic ways to help kids with speech delay talk.  'Twinkle twinkle little.......' and then hopefully your child fills in the gap/blank and says 'star'.

Before David started school we used to attend Singing Hands classes.  The organisation uses Makaton as a communication aid for young children. David often found it difficult to focus during the session but afterwards we found he would be very interested in the same rhymes and songs and we now use Makaton sign language everyday.  His attention has improved and he can now watch some full length movies including Disney's Frozen. He loves the songs, but I was pretty sure he was just enjoying the music. I'm not allowed to sing along as I think it's too distracting for him. 

But, yesterday when we'd finished with the television I started singing one of the song's 'Love is an open door'.  My Makaton is not bad, and when I saw David's interest I was able to sign my way through most of the song.  David stood watching.  We came to the chorus and I stopped just before the word 'door', and David spoke.  And then he did the biggest grin.

Honestly, nearly every time there is this type of connection I get the same joy as when his younger sister, Jane, said 'mummy' for the first time. I'm still not allowed to sing when we have Frozen on the television, but I'm allowed to sign and I hope that it might be giving him more understanding and a greater connection with it and therefore the world around him.

External Links
See the sign for door - Singing Hands sign Wheels on the Bus on YouTube

Part of:
The Twinkle Diaries

Monday, 2 November 2015

Being a couple while being parents to our autistic + kids


I spend a lot of time talking about the autism in the family via the kids and mostly via our two boys who have a diagnosis with ASD along with a few co-morbid conditions.  Truth is as much as I love my kids, their condition often affects the whole family.  Having kids with additional needs can have significant impacts on some relationships. 
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