Friday, 30 October 2015

Conversing about broken gingerbread men

We don't really do Halloween in our house.  If you've read 'Rocky reality: Autism and imagination' then you would understand at least one good reason why trick or treating is not a great idea. No, the closest I'll come is decapitating and chopping the legs off gingerbread men for David.

David is a very cunning little boy.  If you didn't know any better, you'd think that he didn't know very much at all.  After all, if you ask him to point to his head, he'll probably ignore you and continue playing with his cars.  But that doesn't mean he doesn't know what you are saying or know where his head is.

There are various reasons why any child, but particularly ones like David who have ASD, won't follow directions.  They may lack the skills to carry out certain tasks, have difficulty processing words or quite often in David's case, lack motivation.  As following instructions is fairly important in terms of functioning in society, being able to do as you are asked is considered a life skill. 

Getting a child with autism to learn this can be difficult.  Some people advocate Applied Behavior Analysis (ABA) programmes or methods for children with autism.  We have found that David responds well to motivation and in this case, gingerbread.

Truth is I'm not chopping up gingerbread men as some strange Halloween ritual but as a way of interacting with David.  It wasn't long after we had gingerbread men in the house that David learned he could use Makaton and his single syllable words to request a 'biscuit man'.  Using PECS have really helped David with sentence formation too.  A few days ago when I pulled out a broken one I offered him a pair of gingerbread legs and he signed 'I want' and pointed to his legs. 

Offer David any other broken biscuit and you are likely to get a crying child. The biscuit is not right. It's broken, it's just wrong. But this seems different.  And it's wonderful that David is able to recognise the parts of a gingerbread man. It means he's using his imagination.  

And it's always good to find another thing that David will communicate with us about. So mostly, I'm going to spend Halloween offering a few legs, arms, heads and possibly bellies to David in exchange for him signing which he wants. I might even munch a few myself. 

External Links included
The Makaton Charity Homepage - Makaton uses signs and symbols to help people communicate. 
Communication Matters - PECS (Picture Exchange Comunication System)

Thursday, 29 October 2015

Our terribly truthful child

Are we the most fortunate parents in the world? Our eldest son is 7 years old and he has never told me a lie. Never.

This doesn't mean he has never done anything wrong. Anthony will freely admit when he has been naughty and understands about the 'naughty step'.  He will offer up his guilt upon the first request of 'what happened here' and will even explain if he did it on purpose or if the event was actually an accident. Anthony has been diagnosed with ASD since he was 4 years old. He has always been literal and taken what he is told and sees as fact, which has proved difficult at times such as interpreting what is real and what is fiction on the television for example.   

Initially we thought he may have difficulty with thinking forward to the consequences of him being truthful and so saw no point in deceit. But there was a short while when Anthony would claim he didn't want to tell me something because he thought I'd be disappointed in him so I know he can think ahead.  At the time I assured him that no matter what he thought, I always wanted him to tell me the truth and he seems to have stuck to this.

But it's not all cheery cheery.  Anthony has wonderfully mocked some of my cooking as 'not being as good as normal', regularly declares I'm not being very nice to him when I'm helping other siblings instead and has mentioned to several relatives that they will mostly likely die before he does.

Today is the first day of the half term holidays that the whole family will be able to do something together.  Anthony has been very excited about his father not going to work.  However, yesterday he also confirmed that the main reason for this is not because he will get to spend time with his dad.  Instead, Anthony is looking forward to spending time with his dad's phone.  The Marvel Champions game has not been downloaded onto any of our other devices because they are on different accounts so Anthony can only play it when his dad, and therefore his dad's phone is at home. 

I sigh and then smile. Lucky Anthony.  A short while ago he also confided that he totally loved his dad and that his dad was his best friend.  And that was a wonderful truth to hear. He'll get to spend a few days now playing The Marvel Champions game sitting next to his best mate.  And of course, I'm the most fortunate mother in the world.

Our blog - A little bit of obsessions in action
Our blog - Anthony's first experience of guilt

Wednesday, 28 October 2015

Issues when Anthony's always aloud

Some people are aware that individuals with autism can be sensitive to loud noises so might be confused by our son Anthony.  Although better at school, in most environments Anthony himself is extremely loud.  He seems to operate at maximum volume all the time, and whilst this might be a bit annoying, it also makes it difficult to tell when Anthony is distressed or needs help because when he shouts for it, he's not actually any louder than normal.

Read the updated post here

Monday, 26 October 2015

Rocky reality: Autism and imagination

Storm trooper

We were so pleased when Anthony started using his imagination. It was something we absolutely encouraged. Suddenly Anthony was Tree Fu Tom, Ironman and then Anakin Skywalker. We recently watched the new Star Wars trailer. We watched and waited for the same questions, the questions we've taught Anthony ask so he is able to understand that the movie is not real.

Friday, 23 October 2015

Hyper-what else?

Anthony has been tip-toe walking for as long as I can remember.  Whether it's running, jumping, climbing or walking, and whether it's at school, home or in the garden, Anthony does it on his toes.  We buy the toughest school boots available.  He bends them all and goes through the ball of them by the end of each term.  Anthony is very sensory seeking and it's long been thought that he enjoys the feeling of pressure this puts on his feet.  In the summer we took him to a trial trampolining class and noticed he wasn't able to point his toes up when they were stretching - in fact it didn't look like he could do it at all.

Thursday, 22 October 2015

Complications when kids are ill

We are fortunate that our kids aren't often ill. Looking after little ones when they are a bit poorly is typical mother work and it's not that different when they are on the autistic spectrum, it's just sometimes a bit come complicated.  This post is by no means graphic but if you don't like reading this sort of stuff, better stop now. Read the rest of this updated post here->

Wednesday, 21 October 2015

Final straws on a pile of worries

Final straw for the camel

Many kids with ASD have 'triggers' for major meltdowns. Or at least that's the way it seems.  It was long ago that I figured Anthony couldn't possibly have as many 'triggers' as it appeared.  Everyone has days where things seem to be stacked against them and we have a 'what else could possibly go wrong today' feeling. 

Tuesday, 20 October 2015

Tearful transition turns out ok

Everything in life has an intrinsic value.   Some things are more important to some of us than others. Some value family, some health, some money. My six year old autistic son values routine.  Routines keep him safe.  Routines ensure things happen right.  Sometimes I'm blown away by the impact a tiny change can have. David has always struggled with transitions.  Sometimes it's easy, sometimes it's difficult and sometimes it's a disaster. This post has been updated, read it here.

Monday, 19 October 2015

Identifying normal repetitive play

toy tea set

I have been watching Jane repeat the same play sequence whenever she is presented with a tea set.  Jane has two older brothers with autism so she is more likely to be on the autistic spectrum than another little girl who has no autism in the family.  I'm watching to see if this play might indicate that she has a lack of social imagination. 

Difficulty with social imagination is one of the 'triad' of impairments that leads to an autism diagnosis. Our social imagination lets us understand and predict what other people are going to do or how an unfamiliar situation may turn out. Some children with autism find imaginative play very difficult and others can use their imagination but because they find guessing the next step in a social situation difficult, they prefer to act out the same scenes each time.  

However, children also learn through repetition. Practising new words and skills is part of being a toddler and should be typical as Jane is nearly two and a half years old.

Jane has been repeating a game we have shown her about making a cup of tea.  Pouring the tea from a teapot into a cup and bringing it to an adult. She then asks them to drink it, asks if they are finished and then takes the cup away.  Here are some things I've noticed and engaged in that indicates to me this might be normal play.

Jane's routine is usually functional, which means things can be used for what they are.  However, Jane can also use substitution in this routine.  This means if presented with a tea set without a teapot and presented with another object, for example a jug or bowl, Jane is happy to pretend this is the teapot.  If there are no substitutions, Jane can also pretend she is holding a teapot, and this is using her imagination too.  Beyond, this Jane was quite happy to bring me a coffee instead and when I said I was hungry, she offered me a piece of cake. This shows she can cope with, think about and engage in changes to the play sequence. To my delight this was cooked in an imaginary microwave in the bookcase.  And as I'm handed my cake, it's obvious that Jane is having fun. A few minutes later she's left the activity and come to watch the television.

However, I could be concerned if Jane appeared anxious or extremely focused during the tea routine.  I would note if she was upset by changing it or unable to have intervention in the play. I'd also be concerned if Jane was unable to finish her routine without getting upset or persisted in only playing with this set, whether she was enjoying it or not.  I can also look for a specific type of repetitive behaviour called 'stimming' which tends to be a sensory adjustment.

Repetitive behaviours, obsessions and routines can limit a child's participation in other activities, cause stress or anxiety.  However they can also lead to enjoying special interests or help someone stay calm or cope with a situation like David does. I'm likely to continue to monitor Jane's progress with watchful eyes.  For now, it looks like I'll be enjoying imaginary cake.

External links
Ambitious About Autism - Repetitive behaviours and stimming
NAS - About autism

Friday, 16 October 2015

Talking to other mums - dinosaur and kitten chat

It can be difficult to talk to other mums about your kids when your kids have additional needs and theirs don't.  It's not that I have difficulty talking about my kids.  It's just almost impossible to talk about my boys without mentioning that they are on the autistic spectrum.   Conversations just fizzle out or become difficult because the other parent and I have very different experiences and we struggle to find common ground.  It's like they are bringing up kittens and I have dinosaurs.

Take for example this week at a playgroup.  Now that my boys are both at school I've been trying to enjoy quality time with Jane at regular playgroups.  We couldn't attend 'normal' playgroups with my boys as it was too stressful for me, the boys, other kids and the other mums.  Now it's just Jane and I during the day, I've been back in the playgroup rota.  Sadly a study early this year found that nearly a quarter of new mothers felt isolated.  Playgroups are great.  Along with other things, they provide a way to get out and meet other mums.  I'm not with my dinosaurs today, so surely I'll get some regular kitten conversations?

Within minutes the question arises, "Is Jane your only child".  I reply that I also have two boys at school.  "Oh really, that must be a handful(!), which schools?"  And that's it; the answer means the conversation is about the boys and their ASD. Then despite me asking about their kids the conversation stops.  Sometimes it feels like I should just wear a badge "I also have autistic kids - there, now let's talk about something else".  

It turns out that talking with others isn't just something that my autistic sons have difficulty with.  I recently went mad on a SEN chat forum as a way of connecting with others who understood. But the good news is that I do get to have adult conversations, often it's with the volunteers running the playgroups and, you've guessed it, other mums of kids with additional needs that are there too.  There are also SEN parent activities and most of all with our loving family and friends. These guys are all comfortable with my dinosaur/kitten chat and are happy to roar and purr with me appropriately.

External links

Thursday, 15 October 2015

Theory of mind - double rainbow and breakfast

Understanding why your child does something is important for all kids. Why did you pull her hair, not do your homework or even why are you so tired today? For neuro-typical kids I'm often told straight away - she took my toy, I don't like my teacher or I'm feeling a bit ill.  Often in children with autism all you have is clues.  This may be because like around 25% of individuals with autism your child is non verbal but it can also be because they don't understand they need to tell you.

'Theory of mind' is being able to attribute 'mental states' such as beliefs, desires, pretending, knowledge, etc. to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own.  My eldest son for example has a unique application of empathy in this post because he finds this difficult.

To help me through the day I often have to understand that it's not just that my sons see the world differently - it's often that they assume I see it like they do, with all their knowledge, emotions, intentions etc too.

This morning, like most mornings, David stood by the bed and clearly signed 'breakfast'. This is great.  It used to be that when David was hungry he would sit down at the kitchen table or by a snack cupboard and wait.  This was not David's way of communicating with me - he didn't understand he needed to tell me he was hungry.  He knew he was hungry so as far as David was concerned everyone knew.  Eventually he would become frustrated and now, just like this morning, David communicates mostly in sign to tell us when he wants something to eat such as meals, food items or drinks.

I think David has developed a basic level of the Theory of Mind which helps him function better in these situations.  He has learned to communicate his needs, but this doesn't necessarily mean he understands the Theory of Mind.  My older son, Anthony, communicates quite well but that doesn't change what he perceives. 

This morning Anthony informed me (again) that he had seen a double rainbow on the way to swimming yesterday.  His father was taking him to his 1:1 swimming lesson while I was at home caring for the other kids. Due to the way Anthony processes light he tends not to look at rainbows (follow by blog to see a post on sensory processing soon) so asked me about what it looked like.  Naturally I had little to offer as I was at home.  Anthony found this confusing.  He knew there had been a rainbow so why didn't I?  Even when I explained that I was in our house and couldn't see the sky, Anthony suggested I should have looked outside to see it.  He was still assuming that l had the same knowledge as he so I had known it was there.

Despite explaining that no one had told me about the rainbow so I didn't see it the conversation fizzled and we moved on.  Fortunately I didn't need to guess my way through any other confusing situations or conversations.  Anthony put on his coat, David finished his breakfast and along with Jane and I, we got into the car to set off for school.

Wednesday, 14 October 2015

Autism and misunderstandings of empathy

My son often appears unsympathetic. He has difficulty recognising his own feelings. But on Monday he astounded staff at school with his excessive empathy.

Today is Wednesday and I was, until the school drop off this morning, fairly unaware of what an eventful day Tuesday had been. Anthony is seven years old and attends a mainstream (regular) school but is supported in his class and throughout the school day by a Teaching Assistant (TA), or Learning Supping Assistant (LSA) full time.

Like many children, Anthony is not very good at telling his parents what he did at school on any day. Even if he does discuss activities, I often find his discussion disjointed and difficult to understand. This week he had mentioned that he had become angry at school but he wasn't angry anymore. This is not unusual for Anthony; he can become angry over very small issues, particularly if he is over stimulated. It turns out he was talking about one of the 'Tuesday events', two of which I'd like to briefly share as Anthony's wonderful way of empathising.

Empathy can be broken down into understanding what others are thinking or feeling, sometimes known as 'cognitive empathy', and 'affective empathy', being able to respond to that with an appropriate emotion. According to some studies, individuals on the autism spectrum may experience one or both of these areas, not being able to figure out what people are feeling or what to do about it.

Children with additional needs are sadly at higher risk of bullying. This can be for many reasons and you can follow my blog as I will undoubtedly cover this topic in the future. On Tuesday two boys who were three years older than Anthony started to bully him in the playground. As it should be, this was noticed by staff, some of whom were quite emotional due to the nature of the bulling. But what happened next surprised them all. Anthony didn't want to tell any more staff at the school because he didn't want the bullies to be in trouble and he didn't want them to become sad.

Anthony has been picked on before. Often this is due to him not understanding what's happening in play. One day a spitting game with boys became a spitting at Anthony game. These few incidents have always been dealt with very well and quickly. Anthony has understood that the children were not being nice anymore and were being naughty. But on Tuesday Anthony was far more concerned with the feelings of others than himself. He was concerned that the bullies would be sad because they were in trouble, that their parents would be disappointed in them, or that they might get sent to the Headmasters office. What a wonderful example of caring for others above yourself.

On the same day, a child in Anthony's class was telling a friend that a boy had hurt his arm falling off a swing. Anthony misunderstood the conversation and thought the boy had broken his classmates arm. Anthony immediately got very angry and had to be taken out of the class and the classmate had to come and explain that their arm was OK. The little boy that had hurt his arm was OK. The little boy had fallen off a swing - no one had hurt anyone. However, Anthony had jumped to the defence of his classmate with such conviction it took a while before he could be sure all was OK. He was so over whelmed that it took time before he could even 'hear' what was being said to him. Anthony may not have got either of the 'parts' of empathy right here.

We talk to our son about bullying and about helping himself to calm down when he gets angry. But, despite his odd behaviour in both situations, I was very proud of his actions.

External Links
Bullying UK -Advice if your child is bullied because is disability or special needs 

Monday, 12 October 2015

A ray of sunshine - autism at the playground

It was a pretty day in the playground.  The family had a higher adult to child ratio than normal and so I was able to give all my attention to David.  Then something amazing happened - for about a minute he didn't need me there.  

Now for a child with autism this is nothing unusual.  David can happily play on an iPad without looking up or needing actual attention for an hour and can in fact refuse assistance on a regular basis.  But this time it was different. He didn't need me to interact with him because he'd started to interact with another child.

The word 'interaction' comes from Latin 'inter', meaning between or among, and 'ago' meaning to do or to act––any “action between” is considered an interaction.  That's back and forth. 

For David this is difficult.  He is 4.5 years and like 25% ( or so of people with autism he is non verbal for the most part. His verbal skills are limited to single sounds, most of his communication is through a loose version of Makaton sign language that we have learned.  Throw in that he doesn't understand, or in most cases care, about what others are doing or saying and it makes 'interaction' quite difficult. Nevertheless, today sunshine illuminating his face he did it.

David stood and then took turns, first spinning another little girl and then when offered the seat was spun in a teacup. I was mesmerized. The rest of the playground were completely oblivious to the excitement I was containing. Most mums, just like the one of the little girl, can take their kids to the playground and expect them to play with other kids without help or often without any parental awareness.  But this was a first for David and me.  My eldest, who is also on the autistic spectrum, still needs assistance with social interactions.  In this case, I was soon needed as an interpreter but that didn't matter - I was interpreting an interaction with another child of similar age. 

The lovely little girl was perceptive "why doesn't David talk", "I want to show you, why aren't you looking at me David?" 

A quick chat later and the she declared, "Well, David finds talking difficult but he is very good at climbing and I find climbing very difficult". 

They played until the little girl had to go home. And David, the rest of the troop and I walked back to the car in the sunshine.

Share your joyful moments of interaction with me, I'd love to hear about them. 

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