Saturday, November 05, 2016

Sunday, October 30, 2016

If autism were a cake - working out the recipe

Saturday, October 22, 2016

Saturday, October 15, 2016

Saturday, September 10, 2016

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

Tuesday, September 06, 2016

Hopes for the school year ahead


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

Saturday, July 02, 2016

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

Thursday, June 09, 2016

Friday, May 20, 2016

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. 

Sunday, May 15, 2016

Tuesday, May 10, 2016

PDA Awareness Day - 15 May

Monday, April 25, 2016

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.

Tuesday, April 12, 2016

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.

Monday, April 04, 2016

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.

Saturday, March 26, 2016

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.

Thursday, March 24, 2016

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.

Sunday, March 06, 2016

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.

Saturday, February 27, 2016

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.

Saturday, February 06, 2016

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.

Friday, January 29, 2016

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.