Trunki with where's wally book, ear defenders, and cuddly toys

The clock is ticking. Operation Holiday has begun, and we have a long list of things to do as part of our pre-holiday planning routine. It is a time when we will need to tread a fine line between routine and a desire to reduce the demands of going on holiday.

As a family with 2 autistics (myself and Eldest, 8), daily routines bring comfort to our day. They are predictable. We like to roll about in these routines like a soft furry blanket, which provides warmth on a cold winters day.

Add to that the sanctuary that is home, a place where we can potter about, and we are lulled into a sense of security and familiarity. We like the familiar, especially when we are cocooned from the world outside, as we can control much of what happens around us.

Any change results in chaos ... new routines take time to bed in and it is painful (literally) when a new routine is required. So holidays are like potentially heading into a category 5 hurricane - unpredictable and threatening to blow everything in the air. No one wants to go on holiday in hurricane season. This is why we need to plan carefully for any holiday that we head off on. If done properly the storm can be avoided.

It is a month, yes a whole month till we fly. Personally, I’d prefer not to think about it, to ignore it until the very last minute.

I want to just turn up and go. I am already struggling with a change in team dynamics at work, which has left me literally grieving for a team member who has left for another job after more than 2 years of working closely together. I don’t like to plan ahead as I find it stressful. It is like a barrage of commands flying at me, dealing with everything that everyone else wants to have in place. This extra planning is adding to an already full workload, and I really wish I didn’t have to struggle with all the different things we need to consider.

But I know this just would not fly (excuse the pun) with Eldest, as he needs time to think things through and get used to the idea of going somewhere new. Gently easing into the idea of it, and feeling comfortable enough to help us plan what we will do on holiday.

Gently easing into the idea of it, and feeling comfortable enough to help us plan what we will do on holiday.

If I am honest, I don’t like flying (especially with the family) and heading off on holiday as it one big stress. Pack, check you have everything, airport, check-in, security, crowds, gate, boarding, flying, landing, baggage, airport, hotel / home, unpack. Corralling the kids each step of the way. Dragging them about on their trunkies (how are they always underfoot), keeping them focused and/ or entertained, and ensuring their volume stays within acceptable limits. Everywhere you go, there are people. In front, to the sides and behind. Surrounded with nowhere to hide, and no chance to breathe. In short, a total nightmare. Why is why the thought of it is enough to wear me out and question whether I really want to go.

But here we are, a month to go, faced with a checklist of things we need to do to help prepare Eldest and ensure that we are as ready as we can be for the routine disruption that comes with going on holiday. This routine has been developed over the years, built out each time we go away. You can read more about this routine in my next post.

The transition into the holiday destination is pretty guaranteed to be bumpy. With so much to consider and many pushbacks to be worked through, the effort required is exhausting, for us and for Eldest. We are literally fighting off chaos.

So why do we do this? It is a question I have asked myself many times and for a long time, we didn’t. In fact last year, after a pretty horrendous flight I promised myself that I wasn’t going to fly with the whole family again. It was just too traumatic for us all. However, the idea of a family holiday is something I struggle to let go of.

We spend so much of our lives at home avoiding going out due to the challenges it brings, that the chance to go somewhere for a week is a strong lure. 

Plus, as a keen photographer, the idea of exploring another country is enchanting. Staying at home I feel like we are missing out. We spend so much of our lives at home avoiding going out due to the challenges it brings, that the chance to go somewhere for a week is a strong lure. Earlier this year I went on holiday with Youngest as I didn’t think Eldest would cope. Having a split family holiday wasn’t great, as it meant our family was divided. This is why I want to try again - to give us a chance to spend time as a family without the distraction of household chores, and give us some respite from our everyday lives.

I know it won’t be easy, which is why putting in all this preparation is so important. It is also why support for autistic travellers is so important to us. It helps to make a challenging situation, a little less challenging and thus a little more possible.

Fingers crossed with a lot of preparation and a little support we will have a holiday to remember, for all the right reasons.

Six months after I was diagnosed as autistic, I had an epiphany on the train as I made my way to work. This is what I hastily captured as a note on my phone as I sat on the train. The past year has been such a big personal journey for me, and I am still working out what things mean for me. The one thing I do know is that I feel much more settled and in control of my life now that I am embracing who I am.

I finally get it. I didn't need a diagnosis to make a change in my life, but it gave me the courage to be open about the things I struggle with and helped to inform discussions around changes that I needed to happen in order to become the person I was meant to be.

I just needed to feel empowered to talk to the people around me. To acknowledge the things I struggle with, without feeling like I am coming up short or failing in some way. To be able to say "yes, I do struggle with this .... now, how do we work together to work around it". This is so different from "I will work hard to change who I am, and try to improve in the future"

yes, I do struggle with this .... now, how do we work together to work around it

I have the language to help me explain to people why I struggle. It is not that I choose to be difficult ... in fact, I want the complete opposite but often can't control it. In the words of Lady Gaga, I was born this way. My brain is wired differently and my ability to cope in certain situations requires a huge amount of effort which people don't see.

It's a bit like breathing as you climb a mountain, the higher you go ... the harder it is to breathe. This is because the air gets thinner and you need to work harder to get the air in. From the outside nothing looks different, you are still a person breathing air .... but you tire so much more easily and your ability to hold a conversation can be impacted.

Climb high enough, and you may need oxygen tanks to help you breathe. Without this help, your ability to function will come to a stop and you will collapse. Even once you descend, you may continue to be impacted for a while as you recover from the lack of air.

This is what it is often like for me in social situations. The complex the situation (large gatherings of people, group discussions, conflict resolution, dealing with differences of opinion), the harder it is for me to function. This can often lead to me losing the ability to hold a conversation, think things through, and if pushed I am likely to become confrontational.

It is a physical limitation, not something I choose to do. I can’t switch it on or off, just like people can’t force themselves to breathe when the air is thin.

Some days I just need a little time to acclimatise, other days I may need an oxygen tank and sometimes I may need to head back down the mountain to catch my breath.

Being true to myself has allowed me to be true to others. To be open and honest. No longer do I feel like the solo mountain climber facing the elements on my own. I now have my support crew who know the tracks of the mountain, can help me plot my journey and are able to step in to support me when I most need it.
Embracing Neurodiversity, building a community of neurodivergent thinkers and allies to drive change

So much can happen in three months. For me the last three months, since I last shared a post with you, have seen me start something new. Something that I am quite excited about. I have taken the bold step and launch a new initiative call Me.Decoded - it is focused on providing a platform for others to share their personal thoughts and experiences, with the goal being to promote Neurodiversity.

It is not just focused on autism (though of course, this is a big focus). Being about Neurodiversity, it also includes dyslexia, dyspraxia, dyscalculia, ADHD, ADD, OCD, Bipolar, Sensory processing disorder and all other neurodevelopmental differences.

The launch of Me.Decoded has been greater than I could have hoped for, and I have had so many people get in touch about sharing their stories and becoming regular contributors to the site. I also shared my own personal story, where I shared parts of my life that I hadn't previously shared publically (especially about my growing up). As with most blog posts that I write, I had my heart in my throat as I pressed publish. I was worried about my mum's reaction to sharing my story and wondered how others would react. Once again, my sharing my story allowed others to feel a connection (albeit virtually) and understand that they are not alone in their struggles.

I cried this week when I was sent a message from someone who said that in discovering Me.Decoded, they had "found a sense of belonging". This is what I think so many people are looking for. To feel understood, and feel like they belong. I hope that as more people choose to share their stories on Me.Decoded, this sense of belonging can be felt by a greater number of people. There truly is a power in the sharing of personal stories.

So what does this mean for Life and ASC? It means that I will not post as often as I have done in the past, but I do still plan to blog. I have set myself a goal of trying to post at least once a month, as there is still so much I wish to say and I don't want to say goodbye to Life and ASC which has been such a big part of my life for the past few years.

I do hope that you will pop over to Me.Decoded and let me know what you think. Also if you, or anyone you know, is interested in sharing your story / thoughts/ or tips for Neurodiversity then please do get in touch.

Two weeks ago my 8-year-old son gave me some insight into his views about autism, when we spoke about an article written by a mum who literally pushed her autistic son to see an Elmo show. After worrying last year about my son saying he was learning to be normal, I was buoyed as I listened to him speak about his autism and his thoughts on the situation described in the article.

Long before I ever heard about Neurodiversity, or received my own diagnosis, I made a decision to be open with my son about his autism. From day one we told him that it was a difference which meant that sometimes he needed a little extra support in the same way that Daddy needed glasses to see.

As someone who was bullied at school for not fitting in, I wanted my son to own who he was. Verbal bullying only works when people say things that resonate with your secret doubts about yourself. It is much harder when you have confidence in who you are.

In our house being autistic is a factual part of who we are, and we often have open discussions about it. We talk regularly about behaviours and triggers, and the need to work through our frustrations in a less challenging and confrontational manner. We push the boundaries of what is possible, and try to work through situations when heightened anxiety gets in the way. When dealing with challenging behaviour, we try to understand the possible reasons for the behaviour and address those. 

This is not to say that I am someone who only focuses on the positives. I am a parent and, like all parents, find that raising a child can test my limits. At times the additional challenges of heightened anxiety, demand avoidance, and challenging behaviour feel like more than I can cope with. There are days when I scream and days when I cry. These are the days when I question “where is the support” and the guidance to get through it. Some things just don’t make it into the what to expect parenting books.

Recently my son refused to continue his weekly swimming lessons because his favourite swim teacher was unexpectedly ill for a long period of time. My son loves to swim, and absolutely loves being in the water. Despite the love of swimming, he refused to enter the pool without his favourite swim teacher. For 6 months we tried every Saturday, with no luck. No amount of cajoling, bribing or enticement was enough to convince him. He point-blank refused and any attempt to encourage him to take part would result in him getting agitated. In fact, he didn’t even want to be in the pool area while his sister had her lesson. It was frustrating as we knew he would enjoy it, if only we could get him in the pool.  We were ready to give up when the teacher came back. That day he was straight back into the pool.

So it was with interest that I found out my husband and son had talked through a recent article in the Washington post where a mum describes how she forced her son into a theatre to watch an Elmo show, knowing that he would enjoy it despite his initial fears. It was a difficult read, as the mum had to literally push her son kicking and screaming while people around her commented and stared.

When I read the article I cried. I recognised the sentiment of “if only we could make it past the curtain, then everything will be ok”. I have been there myself, but the situation described seemed so extreme that it concerned me. All I could think was "why couldn't they have found another way".

In my mind, I saw the scene play out and felt the boy's fear as I read about him screaming and trying to get away as he was pushed towards the unknown. I wanted to take back that moment for them. To have Elmo meet them at the door, and guide the into the theatre whilst entertaining the boy with something that was familiar to him. I wanted the family to have the theatre to themselves so that they could have the time to move forward at their own pace, only moving forward when they felt ok to take the next step.

My son’s reaction was a little more candid. In his view it was torture. Even when told that the little boy eventually enjoyed the experience and was able to enjoy other things as a result of his mum pushing him, he was adamant that the mum was wrong. When asked what the mum should have done instead, he responded “let him do it his way, and wait for him”.

My husband pointed out that the mum felt she was trying to help her son so he could enjoy the same things as all the other children, and felt that his autism was stopping him from doing that. My son’s response made me realise how much he has embraced autism as a part of who he is. He told us, “autism makes you special. You shouldn’t try and get rid of it. My autism gives me fidgety eyes so I can spot things really quickly. I can spot Lego pieces quicker than you can”.

We don’t often get to know what my son thinks as he doesn’t like to talk about his thoughts, so this was a great insight into how he feels about autism. He doesn’t know about the challenges of learning difficulties or difficulties with communication, so I don’t think he can fully appreciate the situation between that mum and her son. Despite that, he has given me something to think about.

For my son, the possibility of enjoyment is not enough to warrant pushing him past his limits when he is struggling with the uncertainty of something new or different. He would much rather pick out Lego with his fidgety eyes, and be given the time and space to get through things in his own way. We will continue to push him out of his comfort zone, but will try to be careful to ensure that we are not taking his so far past his limits that it feels like torture to him.

What a great time of year to celebrate women. With Mothers day and international women's day, I want to take time to recognise some of the amazing women who are doing what they can to change the world. These are definitely women who encapsulate what it means to press for progress.

Over the past year, they have collectively achieved so much in shaping the world around them. I have beamed with pride each time one of them are invited to speak out in the press in order to raise awareness for some much-needed changes. You may have heard them on Radio 4, seen them on ITV's This Morning, BBC's Victoria Derby Show, Sky news, or read about them in all the major (and many local) newspapers.

Welcome to the second edition Neurodiversity notions linky, where you can share and read posts relating to neurodiversity in educational settings and workplaces. This includes Dyspraxia, Dyslexia, ADHD, Dyscalculia, Autism, Bipolar, OCD, Tourette Syndrome, and others.


I can't believe it has been a month since I launch my Neurodiversity linky. So much has happened since then. The big news is that I have buy-in from the Head of my company to establish Neurodiversity at work. I am so extremely excited about the possibilities, whilst being a little (lot) nervous about how it will all turn out. 

neurodiversity - lessons from past change makers

I believe a step change is needed for Neurodiversity, which requires making people stop and think. To think about their long-held views and beliefs, question what is right, and consider what needs to change going forward.

I was reminded of this as I watched David Letterman interview Barack Obama, and again when I  read the articles celebrating 100 years of women being given the right to vote. Since then I have been thinking what change-makers of the past can teach us about getting society to embrace Neurodiversity.

connecting with my autistic son and developing the love I thought would never happen

There is nothing that I have wanted more than to feel loved by my 8-year-old son. Unfortunately, he just didn’t want to love me and nothing I tried made any difference. I was on the verge of accepting that we would never have a loving relationship when everything changed.

For years we have struggled to connect as love is something he measures and he routinely told me that he didn't love me. He loved his Dad, but not me. It hurt, and I feared that we would never have a bond. Even worse, he wanted nothing to do with me and insisted that I didn’t go near him or do anything for him. If I brushed past him, he would physically recoil and try to brush off my touch.

I was an unwanted presence in the house. The person he wanted to come into the house via the back door, so he knew to be excited when Dad got home. No matter how hard I tried, I just couldn't do anything right and I couldn't win him over. Everything that went wrong was my fault, and the praise for anything that I did right was attributed to Dad.

We were always at odds with each other, and I would routinely end up shouting at him in frustration when he refused to listen to me. I sometimes wondered if it would be better if I wasn't in the house, as I worried that my own behaviour was having a negative effect on my kids. Parenting was anything but a positive experience and the lack of love was not bringing out the best in me. I was an angry parent, and my guilt about not having a bond with my son was all consuming. What kind of mum doesn't connect with their son?

Then we found Pokemon. Or to be more accurate, I found Pokemon.
when the uncertainty of holidays for my autistic son threatens to spoil the fun

EuroDisney. The place of childhood dreams,  and the destination for our next family holiday. With just over a week to go, I should be excited. The problem is that I can't stop thinking about our last holiday, and wonder if we are destined to face the same struggles this year.

Our last holiday promised to be a great family break. We found a good deal at a hotel in Banff in Canada. It looked like a castle and the family were excited about the prospect of skiing. We had prepared the children for what to expect and made sure that we took plenty of their favourite toys to play with while we were out there for the week.Unfortunately, the trip was memorable for all the wrong reasons.

Welcome to my new Neurodiversity notions linky, where you can share and read posts relating to neurodiversity in educational settings and workplaces. This includes Dyspraxia, Dyslexia, ADHD, Dyscalculia, Autism, Bipolar, OCD, Tourette Syndrome, and others.

On the first Thursday of each month I will post a new linky asking for people to share any posts relevant to embracing neurodiversity in educational settings and workplaces. I hope it will become the desitination for posts on strategies, challenges, thoughts and advice relevant to supporting neurodiverse needs and establishing cultures which embrace the benefits of neurodiversity.

For those who have not heard of a linky before, it is a way for bloggers to collectively share blog posts on a common topic. It is a great way for fellow bloggers to share their own posts, and for my lovely readers to discover new posts.

Each month I will share one of my own posts and will choose a favourite post from the month before, which I will also share on my Facebook page, twitter feed and pinterest page.

This month, I am sharing my post on the change that I want to make for neurodiversity in 2018. Hopefully this linky will help bring about the changes I hope to see.

I look foward to reading your posts, so please feel free to share your posts (old or new). If you have any questions, please contact me.

The rules

  1. The linky will open on the first Thursday of each month, and will remain open until the last day of the month
  2. You can link up to two posts each month.
  3. Please comment on my host post and at least one other post, including #NeurodiversityNotions in the comments. 
  4. Share your posts on instagram, twitter and pinterest with the hashtag #NeurodiversityNotions. I will reshare items where you mention me (@LifeAndASC).
  5. Include the linky badge in your post, by copying any pasting the html below into the bottom of your post
  6. Please be kind and respectful of each other. If you do disagree with someone, please be considerate in your response. Change can only become reality when we find a way to positively work through our differences. 

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