Saturday, November 05, 2016

Published Saturday, November 05, 2016 by

An unexpected moment - seeing my autistic Son think of someone else

social communication and autism - making progress

This morning my Son floored me with an expected moment, a touching gesture of kindness towards his sister that left me speechless.

To many this would not be such a big deal - an older brother thinking of his younger sister. To us this is huge.

The party dynamic

Despite always having enjoyed his birthday parties, last year's birthday party was disastrous. In the run up to the party he refused to talk about what he wanted, all I knew was that it had to involve paw patrol. So I spent weeks making a paw patrol cake, and arranged a pizza making party with some friends he had not seen in a while (he had moved schools). Most of the day was spent under the table refusing to talk to any of the invited guests, and he complained for weeks about me getting the party wrong (turns out paw patrol & pizza just don't belong together).

Over the past year he has struggled to form friendships at his new school, and in social gatherings he spends his time with Dad rather than trying to engage with the other children. Engaging with other kids is just not high on his agenda, even though he says that he wants friends.

This year, I decided not to push the party agenda .... but kept checking in with him to see what he wants to do, just in case he changes his mind. Until this week, he was completely disinterested and had not desire to invite anyone from his school.

Agreeing to a party

Today was different. When I asked whether he wants to invite anyone from school to his party,  he rattled of a number of people from his year. He even agreed when I suggested that we invite his whole year (there are about 15).

We then got to talking about his cake (Lego city) and some of the things he wants to do at his party.

It was more than I could have hoped for, and then he floored me.

Extending the invitation

He asked his younger sister if she would like to invite her two closest friends to his birthday party.

His thinking of someone else and asking them what they want, is a big leap forward for us. After years of him seeming disinterest, and telling people what he wants them to do (rather than asking), this is a glimmer of hope that he is starting to consider the people around him.

I would have hugged him, if he would have let me. Instead I smiled quietly inwards, a smile that has lasted all day.

I hope that this is something that continues to develop for him as I know he wishes he that he had friends, and this has been something that got in the way of that.

Party time

I now have 3 weeks to find a venue, invite his class and sort out a party that will find the balance to meet his expectations without being overwhelming. Let's just hope we are more successful this year.


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Sunday, October 30, 2016

Published Sunday, October 30, 2016 by

If autism were a cake - working out the recipe

autism is more than one diagnosis


Recently I was asked about my son's autism diagnosis, which quickly led to a discussion about how getting his diagnosis was not down to a single event or point of view - there was no one diagnosis that covered all of his needs.

Getting a diagnosis involved discussions with school about his observable difficulties, meeting with experts who each provided their professional opinion, and making our own judgements based on our increased understanding of autism.

To date we have had input from over 16 professionals, teachers, SENCOs and support workers who have each observed, written reports, noted difficulties, and suggested support strategies. I have two lever arched files filled with reports, letters and logs detailing everything that has been discussed and noted to date.

It was only by combining these different insights, trying out the suggested strategies to see what worked and providing our personal insights from daily life with our Son, that the professionals involved have been able to form a fuller picture of his particular needs and his diagnosis.

It was a bit like trying to figure out the recipe for a cake.

Now I am no baking expert, and won't be entering Great British Bake Off (on BBC or Channel 4), but it did get me thinking of the many ways that trying to get a diagnosis was like trying to work out the recipe for a cake.

So here goes ...

Working out the recipe

The search for the right recipe starts with the cake.

You need to understand the cake before you can start to thinking about the recipe. An understanding of what it looks like, the texture and the taste helps you judge when you have got the recipe right. Just think about what often happens in the technical challenge when people are asked to bake something that they have never some across before. 

You need to understand the person before you can begin to understand what their needs and diagnosis is.

This was one of our biggest challenges when getting a diagnosis - it takes time to understand a person and the reasons for their observable behaviours. Professionals only have limited time to make their observations, and the reasons for observable behaviours can be complex and varied. This means that is is not always easy to determine the diagnosis.

Is it a Cake?

First you need to make sure that the cake is indeed a cake.

Sometimes there can be differences of opinion about what is or isn't a cake. McVities ended up in court to contest that Jaffa cakes should be classed as cakes, so that they wouldn't have to pay tax. Sometimes a judgement call is needed to make the call between what is a cake and what is not. 

One of the main challenges in diagnosing autism, is that the cause of observable behaviours can also be put down to other reasons. Autism can often be missed or misdiagnosed. In some cases parenting can be blamed, or indicators are linked to other conditions including dyspraxia, dyslexia, Attention Deficit Disorder and Social communication disorder.

Working out whether it is autism or something else is key so that the right support is considered to meet your child's needs.

Key Ingredients

The first step to working out the recipe is to think about the key ingredients.

Cake's typically include several key ingredients of cakes - including flour, eggs, butter and milk. The variety comes from how you mix these ingredients together, and the additional ingredients that you include in the recipe. However, there are exceptions - you can make gluten free cakes without flour, egg free cakes and oil based cakes which don't require butter.

There are some difficulties that those on the spectrum will usually have. This includes social communication and social interaction difficulties, with restricted & repetitive patterns of behaviour which limit/ impair every day functioning. (source: NAS).

Other difficulties may include learning difficulties, over or under sensitivity to different stimuli (incl. sound, touch, taste, smells, lights, temperature, pain), limited ability to use their imagination and a lack of theory of mind (the ability to understand that other people have their own thoughts).

The criteria used by professionals to help diagnose autism are listed in DSM-V, however there needs to be a level of judgement when trying to come up with a diagnosis.

As with cakes, there are exceptions to the rule. Not everyone with autism will have all of these difficulties, and there are those who meet some but not all of the autism diagnostic criteria.

Cake Varieties

Once you haven the key ingredients identified you need to think about the the cake variety, as this can help you identify some of the additional ingredients to include and the techniques to use to bake the cake.

The list of cakes is endless - Mary Berry's ultimate cake book has over 200 cakes! And then you have the different ways that you can make the same type of cake, where you can use different techniques for mixing the ingredients to get different results.

Even with the same cake recipe, the end result can be different each time you make it. This is due to the fact that other factors such as the ingredients and oven used can have an impact on the how the cake turns out.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. 
--National Autistic Society

Autism is classed as a spectrum disorder as it can impact people in different ways, which means that the characteristics can vary from person to person.

There are numerous labels for autism including Aspergers, Pathological Demand Avoidance, (PDA) Pervasive Development Disorder, High Functioning Autism (HFA), and atypical autism. These days the label Autism Spectrum Disorder (ASD) is typically used for everyone on the spectrum (source: NAS).

Even with all these labels it can be difficult to find a description that fits, as autism means something different for each person on the spectrum. Despite this, understanding which label(s) fits the most helps to identify which support strategies are most likely to work in supporting your child.

Family recipe

Where the cake is a family favourite, you can get the recipe from other family members.

In our family it is chocolate biscuit cake (though I do question whether it qualifies as a cake) - there is no family gathering that doesn't feature chocolate biscuit cake. Over time the recipe may evolve, Not everyone in the family will adopt the recipe, and it may even skip a generation. I have not yet tried the family recipe myself, though I am sure the time will come when I am asked to make it.

Autism is believed to be due to neurological differences, with strong genetic components (see research autism for more details). Just like the family recipe it can be passed down from generation to generation, with siblings of autistic children twice as likely to have autism (source: NHS).

This doesn't mean that everyone in the family will have autism, and those that do may have very different challenges from each other.

Professional insight

Baking is an art - from knowing which brands to buy for the best quality, to knowing how to judge when it is mixed enough, and how to get a level bake on your cake. These are the things that you can't know just from reading a cook book.

There is nothing like spending some time with a professional who is able to advise you based on their experience, and can offer you guidance on some of the finer points of your recipe and the techniques that you can use to get the best results from your baking.

Even with this advice you may need to tweak their suggested recipe to account for personal taste, and your own equipment (mixer, oven, cake tins) which is slightly different to those that the professionals use. After all, how many of us have a kitchen to rival that of professional bakers.

There is so much information out there, and in the beginning it can be difficult to know what does / doesn't apply to your child. Professional insight can really help you to understand more about your child's needs and the techniques needed to support them. 

It is through the many professionals that we have found out about social thinking, dealing with demand avoidance, how to handle transitions, managing anxiety and improving self-regulation. In many instances we have had to tweak the advice to meet our individual needs, however it has been key in helping us to make the progress that we have.

Decorations

When thinking about the cake, you also need to think about the decorations.

Cakes can be served with minimal decorations, like Victoria sponge, or topped with more decorations than a showstopper challenge. Often it is the decorations which distinguish one cake from another.

Autism can often occur with other other conditions including dyspraxia, anxiety, ADHD, learning disabilities, sensory issues, and obsessive compulsive disorder. For many people, autism is only part of the story. This is why it is not just about getting one diagnosis - in many circumstances you need a diagnosis for each of the different conditions that they have. 

Perfecting the recipe

Perfecting a recipe can take years as not all cakes are the same, different types of ingredients can affect different cakes in different ways, and some ingredients can be pretty hard to spot. Then there is the time required to perfect your backing techniques, and develop your bakers intuition to know when you

After two years we are still working out the finer details of our Son's autism recipe, but we think we have identified the main ingredients and are confident that in time we will be able to perfect the recipe to help him.

Our current understanding is that he is has atypical autism, with demand avoidant behaviour, social communication and self-regulation difficulties.

He struggles around other children his age, and does not do well with routine or transitions. He is a very logical thinker, of above average intelligence, with advanced language development, and an over active imagination (that he often gets lost in). When anxious he will increasingly try to control the world around him, becomes sensitive to noise, seeks out sensory input via touching different textures, and tries to get vestibular input via running around and jumping on/ off our furniture.

Cake wise - I would described my son as a marmite cake!* Slightly unexpected, somewhat unusual and completely changing the way we think about things.


* not your typical cake, but oh so yummy (you can try it for yourself here)
Spectrum Sunday

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Saturday, October 22, 2016

Published Saturday, October 22, 2016 by

Getting an EHCP - the process, useful links and parents stories


It is just over a year since we got our EHCP, and my Son is now making great progress with the additional support that has been put in place to meet his needs.

It definitely was not an easy journey. This was largely due to the constant uncertainty, trying to pull a huge amount information together & make sense of it all, and the rollercoaster of emotions as we progressed through each stage of the EHCP assessment progress.

You can read about our journey here:

Whilst researching what we needed to consider when going through the EHC Needs Assessment, I came across a number of links and parents stories which provided us with valuable insights. With a bit more time on my hands, now that the required form-filling has slowed down, I thought it would be good to try bring them together.

Hopefully this saves someone else a few hours (weeks) of surfing when they are trying to get their heads around the process and what is needed.

Support & General Resources

First things first, this is definitely a journey you don't want to face on your own as having support and guidance from others can really helps you keep going when things get tough. 

Here are some of the organisations which we found helpful when we were going through our journey. 
  • SOS!SEN - web resources, advice line, workshops, one-to-one advice sessions, advice clinics
  • ISPEA - web resources, advice line, tribunal support, training
  • SEND IAS - web resources, independent support, reviewing documents, attending meetings, providing advice
  • National Autistic Society - web resources,  Education Rights helpline

An overview of the EHCP Process 

Below is my view of the EHCP process, with key things to consider as you move through each of the different stages. This is not exhaustive, and is intended to help signpost you to the different things that you may want to find out more about.

A big thank you as well to the lovely team at Bucks SEND IAS who have worked with me over the past few months to ensure that my overview of the process was accurate.

overview of key considerations for getting an EHCP (education, health and care plan)



Here is the collection of resources I have found, and which I have tried to align to each stage of the EHCP journey. Do let me know if you know of anything else which I could add to the list.

The EHC Assessment Process


Inform


Request


Assess


Draft


Finalise


Appealing your EHCP


Reviewing your EHCP - Annual / Emergency Reviews

The process doesn't end when you get your EHCP, here are some of the links I have found which make reference to annual / emergency reviews (an emergency review follows the same process as annual reviews).

Legal Q&A

If you still have questions, then reach out to one of the many organsiations which can provide you with support (see above). For common questions, here are two FAQ which I have been able to find. 

Other parents stories

When we went through the EHCP process, the one thing I wanted was the personal insights from other parents who have been through a similar experience. Here is a collection of some parents stories who have faced the EHCP assessment process. If you have a story that you would like to share (published or unpublished), then do get in touch and I can add you to the parents stories.

  • Various families have fed back their experiences and thoughts of what it is like to go through the EHC assessment process on the ehcp journeys website 

Final thoughts

The EHCP process is daunting, tough, and at times the stress & pressure can be overwhelming. With everything that is going on, it is so easy to become isolated and to feel like it is you vs. the system. 

For those going through the process, or about to start the process, know that there are many options out there to help support you each step of the way. You got this!

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Saturday, October 15, 2016

Published Saturday, October 15, 2016 by

High & dry - nappy free after almost 7 years


So a little thing happened in the past 2 weeks - we are nappy free - after almost 7 years.

Six months ago we were regularly having accidents during the day, and getting dry overnight seemed like an impossible dream. The day time accidents were particularly frustrating, as it seemed like Son just didn't care and was making no effort to try to avoid them.

We raised our concerns about the daytime accidents with our paediatrician. At the time we were told to wait until we were able to reduce his overall anxiety levels (it was in the midst of the school exclusion battles as a result of his negative behaviour, largely due to anxiety). She felt that his brain was so overloaded with everything else that the signal to say "Hey, we need to go to the loo" was not getting through.

The paediatrician was right - as soon as the anxiety reduced, so did the daytime accidents.

Watching TV can still cause some issues, as Son can't tear himself away from the TV when it is on. Knowing that this is an issue, we have a rule in the house that you can't watch TV until you have been to the loo. We also keep an eye on him and look out for the signs that he needs to go. As soon as we see him squirming, we are quick on the pause button so that he can take a break. Some days he even presses pause himself.

Getting dry overnight has been bigger struggle and a long time coming - at first we tried everything we could think of :

  • Going cold turkey (a week of wet beds and a very unhappy child quickly put a stop to that)
  • Reward charts (made no difference)
  • Insisting on going to the loo before bed (cue massive battles and a refusal to go)
  • Midnight trips to the loo (grumpy boy in the middle of the night & tired parents meant that didn't last long)

Eventually we gave up trying, as it just created too much tension and involved too much effort from all of us. It was like a guilty secret - guilty because we had just stopped trying to change things.

Recently I came across ERIC, a charity which can help children with bowel & bladder issues. They have some great resources, and I realised that we weren't the only ones having difficulty. This gave me renewed resolve, and I began to consider getting a bedwetting alarm and seeking further professional advice (by consider I mean I mentally made a note to look into it if things didn't change).



Turns out that in our Son's case, he just needed time. Two weeks ago we forgot to put pull-ups on before he went to bed. In the morning he was dry. Realising that the time had come, we worked with him him to try more nights with out his pull-ups.

At first it was a bit like taking away a favourite comforter and he resisted, insisting that he was not going to bed without his pull-ups. We continued to gently, but firmly, encourage him and he started to agree to go without more frequently. Today I will be throwing out the pull-ups.

When I say a little thing happened in the last 2 weeks - I meant a HUGE thing. There were no great celebrations or shouting from the rooftops about out Son's latest achievement, however at home we are quietly pleased, with mini fist pumps all round

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Monday, September 19, 2016

Published Monday, September 19, 2016 by

On his way to being an independent writer - after 2 years of resisting


overcoming a resistance to writing, a major step forward for my son with autism

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Saturday, September 10, 2016

Published Saturday, September 10, 2016 by

A meltdown, a broken door, and the realisation of the progress we have made

autism and meltdowns, reflecting on the progress we have made in reducing the frequency of our son's meltdowns



What do you do when your 6yo kicks in your door, as a result of escalating frustration because they were told they can't have the iPad?

This happened when my Son was with our childminder recently -  I was gutted when I got a photo of our broken door and a voicemail telling me what had just happened. Even so, it reminded me of how far we have come as it has been a couple of months since we last experience a meltdown.

Imagine being in an emotional state that you can't get out of, where you are so worked up that you are no longer in control of your actions. You are beyond listening and your brain is just screaming NO.

This is a meltdown - a state that many children with autism experience, often as a result of anxiety from an underlying trigger.
At its worst we were experiencing meltdowns 3-4 times a week.

Meltdowns have been one of our biggest challenges for the past couple of years, and has often resulted in damage to the house and toys or lashing out at people close by. At its worst we were experiencing meltdowns 3-4 times a week. Every day seemed to be filled with challenging behaviour and I didn't feel like I could cope with looking after our Son.

So what changed?

We are more aware of the situations that are likely to cause anxiety and how to avoid them, he is now in a school where he can get the support he needs, and we have also have got better at  managing his anxiety using several strategies to avoid meltdowns

I am thankful that we can now largely avoid getting to this flashpoint by managing his anxiety 

As for my son, we calmly spoke later about what happened and talked about what he could do differently when he is feeling that way. He is now taking on small jobs in the house to 'pay' for the door.

Now I just need to work with the childminder to help her understand more about what is likely to trigger meltdowns, and what strategies she can try to use to avoid situations like this in the future.
Spectrum Sunday

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Tuesday, September 06, 2016

Published Tuesday, September 06, 2016 by

Hopes for the school year ahead

THE NEW SCHOOL YEAR IS A TIME FOR REFLECTION & GOAL SETTING

Our relationship with school could be described as rocky.

A year ago we faced the start of the new school year without a school, and three months later there was an emergency EHCP review and a request by the new school to move our Son to a special BESD (Behavioural, Emotional and Social Difficulties) school.

This year we have a school, and I have been thinking about my hopes for the year ahead.

My hopes for the year ahead include:
  • Staying at the school: after 3 schools in 2 years, I really hope that we will finish the school year in the same school that we started
  • Building school relationships: we have learnt the hard way how difficult things are when you don't have the schools support, this year I want to build strong relationships with the school so that we can collaborate together to support my Son.
  • Making a friend: my Son desperately wants to make friends, however his difficulties with social communication and interactions means that he struggles to make connections with his peers. Making a friends is one of my greatest wishes for my Son.
  • Writing a paragraph: writing has always been a struggle as my Son has always resisted any attempts to get him to write. He is capable of writing and has written simple sentences, he just chooses not too. I am looking forward to reading his first written story, as he has a great imagination. 
  • Less negotiation: any request to do something is usually countered with an attempt to negotiate the request, and a good dose of resistance & avoidance. Less frequent negotiation will certainly make my daily life a little easier. 
  • Some consideration:  emotional self-regulation and theory of mind are two key areas that we are focusing on to support my Son's needs, any progress in my Son's ability to self-regulate his emotions and consider other people's points of view will be a major milestone for us.

Fingers crossed, this year our school relationship is a little less rocky and lot more positive as we build on the progress that we started to make at the end of last year.
My Random Musings
Diary of an imperfect mum
Spectrum Sunday

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Saturday, July 02, 2016

Published Saturday, July 02, 2016 by

Realising that talking and communicating are not the same thing


autism and communication

Finding out our Son has communication difficulties at the age of 5, was a surprise. How could our son, whose vocabulary was advanced for his age, have an issue with communication?

He understood what words meant, used them appropriately in sentences, and we often thought he spoke like a mini adult based on the phrases that he used.  He had no issues with talking, and to us he did not come across like a child who had communication issues.

He had no issues with talking, and to us he did not come across to us like a child who had communication issues
What we didn't realise was that he was speaking at us rather than with us, and he was only engaging in conversations that he was interested in. You might wonder how we missed that, but he was our first born and we just put a lot of his mannerisms down to cute quirks.

Reading the speech and language therapist's report was tough, as we learnt of all the difficulties that the had picked up on. This included:
  • slow language processing speed unless he is following his own train of thought
  • tendency to be literal and inflexible in his understanding of language, struggling to see the world from different perspectives
  • not reading and interpreting non-verbal messages accurately, and is not able to use non-verbal communication effectively
  • limited ability to infer or predict information or to understand thoughts and feelings of characters involved in storylines
  • trying to impose his own will on other children rather than negotiate with them
  • difficulties in turn taking and making relevant contributions to discussions

In summary he has a social communication disorder affecting his social interactions with peers and adults, his understanding of himself, and his social use of language.

a social communication disorder affecting his social interactions with peers and adults, and his understanding of himself and others and his social use of language
Suddenly so many things made sense:
  • his not always responding to people when they spoke to him or called his name
  • his changing the topic if we asked him a  something that had happened, or his thoughts / feelings
  • his shouting out and growling at other children on playgrounds and soft play
  • his getting upset when playing football, as he thought the other kids were fighting with him
  • his disappearing into an imaginary world, pretending he is in a superhero film whenever another boy his age is around

With up to 93% of communication being non-verbal (according to Professor Mehrabian), an inability to correctly interpret or use non-verbal communication properly has a major impact on our son being able to understand others or make himself understood.

An additional challenge is that people assume that his ability to communicate is better than it is, as he is so articulate and comes across as intelligent. They don't realise that he has communication issues which makes them less understanding when there is a communication breakdown.

Appreciating that being able to talk and being able to communicate are two different things has shifted our own understanding. We realised that whilst he may have a great vocabulary there is so much more that he needs to learn before he will be able to truly communicate with those around him. 

being able to talk and being able to communicate are two different things
At school he was introduced to Social Thinking, a set of tools aimed at helping children develop social skills. As a superhero fan, he enjoyed the stories about Superflex and the unthinkables, and we now encouraging him to be a social detective to figure out what others are doing or plan to do.

With social skill building integrated into his school day, he is slowly learning about turn taking, appropriate use of voice and participating in group activities. He is making progress, but has a long way to go.

Last weekend we were reminded of his communication challenges when a friends son asked him to play. There was complete disinterest. It was if the boy wasn't there, and my son completely blanked him as he stood waiting for my son to respond.

After a few minutes of silence, I asked the boy about the superheroes that he liked. Suddenly there was a spark, and a connection was made. It was like my Son had suddenly been given an in, and he started to ask the boy more questions about lego and superheroes - his two favourite topics. For the next hour I watched as they played together. It wasn't exactly a flowing conversation between them but it was a start.

I don't know whether he will ever learn enough to have a two-way conversation with people around him, but I do know that through him I have learnt a lot more about what it takes to communicate.

Communication is a two-way process, which means that it is as much about us learning to communicate with him as it is about him learning to communicate with us.


My Random Musings
Sons, Sand & Sauvignon

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Thursday, June 09, 2016

Published Thursday, June 09, 2016 by

Autism and Anxiety

The faces of autism anxiety

Anxiety has the ability to transform or immobilise a child. It can result in behaviours that are extremely difficult to manage, and even more difficult to understand.  My 6 year old Son's anxiety at school resulted in him being physically isolated from the other children at school due to his frequent lashing out at others, and he has been 'moved on' from 2 schools in less than a year.

So you can imagine how I felt when his new teacher said that he had settled in really well and was a completely different child from the one whose difficult behaviour was described in reports from his previous schools. 

After a year of at least one significant behavioural incident a week (usually involving kicking or biting), we have now gone more than 4 weeks without a single incident. 

Not only that.  

He is playing on the playground with his peers and sitting with the others at lunch time. No more physical isolation from the other children. He now seems content to be around others, and has a chance to practice his social communication that he has been receiving support on. Who knows - he may even make a friend.

He is completing most of his school work each week after previously having refused to pick up a pen on most days, though he does still try to negotiate how he goes about this. And the question of him having ADHD has disappeared, as he has shown that he is able to focus on his work when necessary. 

You could say that this overnight behavioural change is a miracle, however we know better. It is down to one thing - understanding and addressing his underlying anxiety

Over the past year we have experienced anxiety in many ways including meltdowns,  refusing to take a taxi to school and challenges with eating out, and the day to day challenges associated with PDA.  Each time we have been able to find a way to address the anxiety, and this has made a significant change to the behaviours that we have experienced. 

Anxiety is a normal part of children’s development, but children with autism spectrum disorder (ASD) can experience anxiety more intensely and more often than other children.

What we learnt about supporting a child with anxiety

So what have we learnt? Here are my thoughts based on our experience, and the advice we have been given. 

Be understanding

Realising anxiety is the likely cause of behaviours can be a game changer!

It involves changing the way you parent and how you react to situations. This can be tricky, and potentially even hard to accept when someone first suggests it. The trick is being there to support and help your child deal with their anxiety - even if it means putting up with challenging behaviour.

Miriam Gwynne wrote a great article about what it is like to parent a child with autism, her post really highlights how much understanding and patience is required when your child is battling with anxiety.

Learning to recognise anxiety and the likely causes is key to understanding. Anxiety can present itself in many different ways including:
  • Refusal to do something
  • Always trying to take control of a situation
  • An inability to talk
  • Aggressive & challenging behaviour
  • A fear of everyday situations
Trying to identify anxiety triggers can be tricky, especially if your child is unable to express what they are anxious about. This can mean being a detective, and working it out by looking for common patterns of behaviours. It can also mean trying different things, to see what might work. 

The following links all contain great information that can help you develop an understanding of anxiety in children: 

Once you have an understanding of anxiety and what your child's triggers are, it becomes much easier to spot when they are becoming anxious. This is turn allows you to act early, before things become an issue.

Help your child to recognise the signs of anxiety

Another key part is helping your child to recognise and talk about their emotions, so that they can work out when they are starting to get anxious. This can help them to do something before it becomes too much for them to handle.

Young minds has a great overview of what anxiety feels like, that you can use to help explain what anxiety is. I also really liked this image from Anxious Toddler about the signs of anxiety.



We also found that using a Feelings Thermometer really helped our Son to express how he was feeling on a 5-scale rating and what he should do when he is at each of the different levels. He is also learning that he needs to say when he is starting to feel Orange - this allows us / his teachers to act early to address the anxiety or remove him from the source of the anxiety so that we avoid a full on meltdown. This is still a work in progress, but he is getting there.

Being able to recognise how they are feeling, and knowing what to do when they are starting to become anxious can make such a difference in managing anxiety levels.

Find ways to reduce the anxiety

Over the past year we have had many recommendations from calming tents & chill-out zones, to controlled breathing and counting to 10. In the end we found that reading a story and lego building are really good at helping our Son de-stress and unwind.

For some ideas, you can read about how interests can be used to calm down anxious children, along with Mindshift's tips for helping to de-escalate behaviours linked to anxiety

The story of Elliott really brought this home how much of a difference this can make - reading the post you can see his transformation from a trashed classroom to beautiful works of art as PDA strategies have been used to reduce his anxiety and he has found painting as way to calm down.

Prepare for potential stressful situations

We have found that it is best to be are aware of a potentially stressful situation, and to try and prepare for it ahead of time.

We now think about potential anxiety - how to minimise it, and what we will do if things don't go to plan - as part of planning for everything that we do as a family. We will also talk through any new situations with our Son, and try to involve him in the planning process so that we minimise the potential of him reacting to something that he is not sure about.

To understand more about what this can involve, read the post from The Little Feather who talks about how they planned for anxiety to ensure a successful holiday with her daughter.

Take care of yourself

This has possibly been the hardest thing for us, I was so focused on needing to be there for my Son that I felt guilty to take time out for me. This meant that I didn't have the energy or patience to be there for my Son in the way that he needed.

TalkSpace has 5 great tips for parents to manage your own stress. I also really enjoyed reading the Happiness project, which encouraged me to create my own Happiness projects. This has really helped me to reconnect with myself, which in turn has helped me become more resilient in facing the challenges of dealing with anxiety triggered behaviour.

Finding support

Young minds have a great selection of resources (for parents and children) to help with childhood anxiety, as well as a support line for parents who are concerned about their children.

Other support organisations include Anxiety UK and Mind.



Sons, Sand & Sauvignon

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Friday, May 20, 2016

Published Friday, May 20, 2016 by

Maintaining my mental health & relationships


Imagine ....

Your Son was diagnosed with autism a month ago by a child psychiatrist. You are trying to find out what autism is (and isn’t), you are chasing to get appointments with the paediatrician as well as several other therapists whose opinion you need (Occupational, Speech & Language, Educational).

With 2 weeks to submit your parental views to convince the LA that your Son needs an EHC needs assessment, you have been called into school for the third time in a month to discuss his challenging behaviour. They want you to agree to a reduced time-table which you can't support as you both work (it’s not illegal as they are an independent school), and they believe you are “lucky” they are being “nice” and not talking about exclusion. 

Then you get a work email that you need to migrate your email. What do you mean I need to migrate my email? Cue breakdown. 

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Sunday, May 15, 2016

Published Sunday, May 15, 2016 by

Community Support & PDA awareness

pathological demand avoidance - the importance of support for parents

What an amazing week this has been for us. It was PDA Awareness Day which I supported with a coffee, cake and chat day along with raising awareness via my blog and social media.

There was a definite increase in PDA related posts and tweets online during the week, and I have had many conversations explaining what PDA is (and what it isn't). I am so excited to see this happening as it means that awareness is growing - I do hope that soon we will see PDA being recognised in the diagnostic criteria

On a more personal level, this week was all about community and connecting with the support communities around me.

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Tuesday, May 10, 2016

Published Tuesday, May 10, 2016 by

PDA Awareness Day - 15 May

PDA day raising awareness pathological demand avoidance

It is just over a year since we were told that our Son, then aged 5, has Pathological Demand Avoidance (PDA) – which is characterised by the need to resist everyday demands due to an underlying anxiety of not being in control.

Since then he has been moved on from 2 schools, asked to leave his child-minder and his only friends have been the teaching assistants at school as he was kept isolated from the other children at school as his behaviour was too unpredictable and he would frequently lash out at his peers.

At home we have had some epic meltdowns – which can last for hours. Looking around the house you can see the scars that these have left – the curtains pulled down in our stairs, the series of broken TV remotes and night lights, the ripped up books/ magazines / paper, the shattered vases & scented candles, the family portrait no longer hanging on the wall.

Despite this I think we have been incredibly lucky.

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Saturday, May 07, 2016

Published Saturday, May 07, 2016 by

Trying to get things done with Pathological Demand Avoidance (PDA)

demand avoidance parent strategic get things done


Can you imagine trying to get two kids under 7 out of bed, dressed, fed and ready to head out of the house without ever asking or telling them to do any of these things? 

This is a challenge that we face every time we want to head out as a family (in fact pretty much any time we want our Son to anything). 

For our Son, aged 6, who has a form of autism known as Pathological Demand Avoidance (PDA), the simplest everyday requests can lead to anxiety and resistance. The more you insist, the more he will resist. 

This means we've had to think of ways to get him to do things, without specifically telling or asking him. 

Over the past year we have tried many techniques, with varying degrees of success (and frustration) - the most effective of these has been the phrase "Last one to the car gets the rotten face paint".

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Monday, April 25, 2016

Published Monday, April 25, 2016 by

Our strategies for eating out - with our son under the table

autism challenging behaviour and eating out

I am a food lover and enjoy nothing more than heading out to a restaurant for a family meal as a special treat.

This is not always easy as restaurants can be a perfect storm when it comes to our Son (6 years old), and the experience can quickly turn from a pleasant meal out to a full-on challenge of all our parenting skills.

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Tuesday, April 12, 2016

Published Tuesday, April 12, 2016 by

Identifying with Alison (the A-Word) - a bully or a desperate mum?

being a tiger, and fighting for your child with autism to get them support.

The A Word has divided our household or more to the point Alison (Joe's mum) has my husband and I each taking different views about how she has reacted since receiving Joe's diagnosis of autism.

My husband took a disliking to Alison in the very first episode and this has dislike has increased with each episode, whilst I have identified with a mum who is fiercely protective of her child and wants to do everything in her power to help him despite now knowing what help it is that he needs.

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Monday, April 04, 2016

Published Monday, April 04, 2016 by

Reflecting on watching the A Word (Ep 2)





Following on from watching the first episode of The A Word, I was keen to see how the story developed and how I would feel about the developments in the story.

This week we saw the family reacting to the diagnosis, and working out what is means for the young boy and themselves. Once again I found myself relating to the story, and reflecting on our experiences.

In particular there were two themes that I identified with - dealing with social isolation, and finding the right education setting.

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Saturday, March 26, 2016

Published Saturday, March 26, 2016 by

Dealing with bad days - and the guilt of not coping

there are days where I loose it - these are followed by quickly by guilt

Whilst I have come to understand more about PDAmeltdowns and the anxiety which drives much of my Son's behaviour, there are days when the frustration of trying to get him to do simple things becomes more that I can cope with.

Times when it all gets too much, when I snap and yell back - this is immediately followed by remorse, tears and an overwhelming sense of guilt for not having retained control of my emotions. Recently I had one of those days.

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Thursday, March 24, 2016

Published Thursday, March 24, 2016 by

Reflecting on watching The A Word


This week the BBC aired the first episode of The A Word. A 6 part family drama about a young boy who is diagnosed with Autism, and his family. In the first episode we see him being diagnosed (rather quickly, but I guess they need to make some adjustments for TV), and the initial reactions of his parents and their immediate family.

For the past few days I have been trying to work out how I felt about the programme - reflecting on our own experiences which were (are) very different to what happened in the show, and trying to think about what people who don't have personal experience of autism will take away from the show.

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Sunday, March 06, 2016

Published Sunday, March 06, 2016 by

An unexpected mothers day

a positive mothers day

I didn't have high hopes for mother's day this year.

My Son spent his last birthday party sitting under the table refusing to interact with his party guests, Christmas day was marked with extreme levels of excitement levels, and Valentines day "was cancelled for everyone" by my Son during a full-blown meltdown when I stuck a heart on his hand-made card the wrong way round (I went landscape rather than the expected portrait) after he asked me to help him finish the card for his dad. 

With this in mind, I didn't make any plans for mother's day as I didn't want a day filled with anxiety due to the additional demands that these types of days can bring to our Son. What I didn't know was that the family has other plans. 

What I didn't know was that the family had other plans.
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Saturday, March 05, 2016

Published Saturday, March 05, 2016 by

Autism & challenging behaviour - why I wished it was my poor parenting



Dealing with challenging behaviours, triggered by anxieties that we are only beginning to understand, has been one of the more difficult aspects of living with our Son's autism.

Many of the suggested strategies for children with autism have had little impact, and with the threat of another enforced school move we have been desperate for further assessments to provide further insight into his needs before things get any worse.

Having managed to secure an initial assessment with CAMHS, we were relieved when the mental health practitioner agreed to put our case forward to their team however there was one comment made that I can't stop reflecting on ....

I can see it is not due to inconsistent parenting

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Saturday, February 27, 2016

Published Saturday, February 27, 2016 by

Facing my concerns about transferring to a special school


autism special school and facing our concerns about leaving mainstream

The past few months have passed by in a blur as we prepared for an emergency review of our Son's EHCP and a request by his school for him to be transferred to a special school, as they feel that despite best efforts they are unable to meet his needs. 

Finding the right school to meet all of his needs has been the biggest challenge for us, as identifying the school is down to the parents and you are not given much advice or direction on where to look.


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Saturday, February 06, 2016

Published Saturday, February 06, 2016 by

Diagnosed with autism - One year on


It is exactly a year since the week it was confirmed that my Son likely has autism, and I started my blog and posted my first entry about the week we found out.

Reading back on my first blog post I can see how far we have come in the past year in understanding his needs, and yet we still face many of the same questions around how best to support him going forward.

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Friday, January 29, 2016

Published Friday, January 29, 2016 by

Roald Dahl stopped our Son refusing school transport


What should be a simple journey - 15 minutes - to / from school in a taxi had turned into a daily battle as our Son's behaviour steadily got worse each time he climbed into the taxi.

We knew enough to realise that this was a sign that our Son was anxious however we struggled to understand what was causing so much anxiety, and the longer we took to find out the cause the worse things became.

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