It has been a long time since I last wrote a post for Life and ASC, and so I have decided that the time has come for me to officially close down the blog.

This blog helped me get through many difficult times, and connect with some amazing people who have been a real support on our journey.

Before closing down the blog, I wanted to write one last post to say thank you to everyone who has followed me on Life and ASC.

I have not decided what I will be doing with all of my historical posts, so for now the top posts will remain available from the blog. I am also transferring the posts where I have written about my own experiences of being diagnosed as autistic to Me.Decoded through which I continue to write as a neurodiversity advocate.

In you are interested in continuing to follow me on Me.Decoded, you can sign up here.

Thanks again.

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.

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.
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.

to effectively manage behaviours you need to understand why they are happening

Addressing behaviours is often like solving a mystery. Just focus on the behaviour and you will likely end up frustrated, hoarse and defeated. Try to work out the reasons behind the behaviours, and you have a greater chance of successfully reduced the unwanted behaviours.

I have previously written about dealing with my son's challenging behaviours which often left me feeling overwhelmed, and the questioning of whether our parenting was to blame. I searched for weeks on end for answers on how to stop a variety of behaviours including biting, constantly shouting, meltdowns, refusing to co-operate and not paying attention in class.

No matter what we tried the behaviours got worse. Our son refused to listen and life became increasingly difficult. The lowest point came the day that he was found holding a cushion over a classmates face. I was mortified and concerned that my son was beyond help, as nothing we said made any difference and we felt powerless to change his behaviours.

Something had to change. We had to change.

Understanding more about anxiety and meltdowns, helped us to reframe our thinking and move away from thinking that we needed to discipline the behaviours we wanted to stop. It was a leap of faith, and one that many people around us didn't agree with. After all, you don't want to let children get away with "naughty behaviour". Just think of how much worse they will get without being disciplined.

Let's stop for a minute and think about what we were trying to achieve. We were trying to stop the behaviours. Discipline is just one way of trying to achieve this. In our case, disciplining negative behaviour and rewarding positive behaviour wasn't working. Our son didn't seem to be in control of his actions, it was as if he was permanently in a state of "fight or flight". Trying a different approach does not mean that we are ignoring the behaviour, is just means that we are trying to find a more productive way of addressing it.

So we started to ask why.

With each new incident, we tried to understand more about what was happening. What were the events leading to the incident? Were there any common factors prior to the incidents? Could our son have sensory issues? Could our son be anxious?  If so, what could be the source of that anxiety? Did our son have the skills to effectively deal with challenging situations?

We began to build a picture of where the real issues were, and were able to identify the triggers which would lead to negative behaviours.

This included:

  • Sensory and proprioception issues
  • Social communication difficulties
  • Difficulty adjusting to uncertainty & unexpected change
  • Over-stimulation in social events
  • Challenges with seeing something from another person's point of view
  • Emotional self-regulation & impulse control
  • A need to feel in control
  • Limited understanding of the impact his actions have on other people

By spending time working out and adressing the underlying reasons, we have been able to address the behaviours which have largely disappeared and we are no longer in the state of high alert that we were once in. This has taken us years to understand, and there are parts of the picture that still aren't clear but we are getting there.

We now look out for early warning signs. As soon as I start to see the signs, I take a step back and try to figure out what has changed. Often it is something quite obvious like an impending holiday or birthday, where my son is struggling to manage his excitement or is struggling with the uncertainty of what to expect. Other times it is less obvious and we spend weeks trying to work it out. Focusing on trying to understand the reasons has boosted my own resilience as I no longer feel powerless to change things, and know that when things get difficult it will pass as soon as we identify the reason.

Interestingly, my son is not the only person that I use this approach with. I have noticed that I am increasingly using this approach at work. If someone becomes increasingly difficult or confrontational at work, the first thing I do is to try work out why. As a project manager whose job it is to bring about change, this has helped me to work through challenging moments and to look beyond the immediate problems to identify the true issues which are preventing us from moving fowards.

Dealing with challenging behaviours is still not easy for me and I still have moments when it all gets too much, however focusing on understanding "why" has helped me to cope and to feel more in control. After all, you need to understand where someone is coming from before you can point them in the direction you want them to go.

You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers.

Your views

Leave your comments below.

Do you struggle with challenging behaviour? How do you work out the hidden reasons? What strategies work for you?

removing anxiety linked to surprise gifts for birthdays and christmas

Last year, I asked myself whether we should remove the surprise of gift giving for birthdays and Christmas. Gift receiving was becoming increasingly difficult, as the uncertainty of the gifts and the wait to open presents was more than Eldest could cope with. This year we tried a new way - no surprises and presents were handed out over 7 days.

What a difference it made, both for my son and my sanity.

Last year

Mummy, Daddy .... can you tell me what my birthday present is? Is it a Power Ranger ? Is it black? Is it red? Does it have a mouth? Just tell me!

We were asked this every day, with increasing frequency, in the weeks leading up to my Son's 7th birthday. Always the same questions, always in the same order.

The questions started just after 6am when he woke us up with the first question of the day and continued until bedtime at 8pm - which he tried to delay with another round of questions. The unknown presents had become all-consuming, and we could almost hear his brain whirring as he tried to find out what he would be getting.

Saying no to Christmas fun
His behaviours were a clue of his inner turmoil: running from one end of the house to another for no particular reason, jumping on & off the furniture, making repetitive whirring noises, talking to himself and constant fidgeting. It was like he was stuck in overdrive, and there was no way to slow him down.

The anticipation was unbearable, and three days before the big day we could hold out no longer as we knew that everything was becoming too much. We let him open some of his presents early, however it was still not enough to calm the storm. As each present was opened there was a whoop of delight when he saw something he like, or a "are you kidding me" when we got something he didn't want.

We thought that having the presents would help to calm things down, as there was no longer the tension of not what was going to be happening. But like all storms, things need to run their course before it you can restore calm.

That afternoon, there were howls of frustration when the presents didn't work as planned (they were transformers, which required some skill in turning them into the different forms) and a growing sense of unease.

By the end of the day, we were exhausted and his behaviour had deteriorated to an all time low. The meltdown that evening was epic, and I vowed that something needed to change as I doubted we would be able to survive another day like that again.

This year

Mummy, remember that I don't like surprises.

It was the second week of December and I had barely had a moment to think about Christmas. Remembering last year and his most recent birthday where we asked him what he wanted ahead of time, but didn't quite get it right as he still struggled with the anticipation of not fully knowing what he was getting.

I decided we needed a different approach. Armed with my laptop, we sat down and browsed the Amazon website together. We agreed up front a total budget, and that all presents bought would need to be wrapped up and put under the tree and opened on Christmas morning. We also agreed that any presents given by other people could be opened before Christmas, two per day. This way, we didn't have to deal with all the surprise presents together.

For an hour we sat going through Amazon, selecting presents and putting them in the basket. We learnt about the value of some toys (such as the £400 power ranger megazord which turned out to be a collector's item and was a definite NO), and together we found a present that he really loved.

Dad's chosen gift - can't beat a Yoda air freshener!
Things also took an unexpected turn, when I commented on the price of one of the toys he really wanted he got up and disappeared. Moments later he returned with his treasured piggybank and emptied out his savings from the year, offering to help pay for the toy that he really wanted. Talk about mommy guilt - how could you say no to an offer like that. I tried to convince him that he didn't need to help pay for his Christmas presents but he was insistent.

Eventually, we agreed that we would use the money to buy a gift for his sister. After that, we were on a roll as he helped me choose gifts for his Dad and his grandparents. Each of the gifts chosen showed him thinking about the other person and what they might like. My little pony for his sister, Starwars for his Dad, a bangle for Nannie and a book grandad. This was a first - in all his years I have never seen him show consider other people's likes or buy them presents.

As the presents arrived in the house, Eldest would open the parcel and then help wrap the presents before putting them under the tree. There was no questioning each day, and no constant questioning about what he was getting or when he could open the presents. This was a much calmer approach, however I did wonder how long he could last with knowing that his presents were under the tree.

Three days before Christmas, we allowed him (and his sister) to start opening presents from friends and family. Each morning we opened a present, and half the day was spent playing with the present. By Christmas morning we had opened half the presents, and had already had great joy from the presents we had opening. It was certainly much less stressful for all involved, as we were able to spread the joy and there was a less frantic approach to ripping open each present to see if we loved / disliked it before immediately moving onto the next one.

Operation Ho, Ho, Ho

On Christmas eve, Eldest stayed up and help us wrap up the stocking gifts and ate the mince pie that had been left for Santa as part of what he called "Operation Ho, Ho, Ho". He stopped believing in Santa almost 2 years ago, after literally guilting his Dad into telling him the truth. Now he is part of the Secret Santa club, which is is a keen member of. The purpose of the club ... to keep the Santa dream alive for everyone who hasn't worked it out - especially his younger sister.

With his alarm set for 7am, it was an early start to Christmas as he came in telling us it was time for Christmas and present opening. The final round of present opening was as calm as it could be with 2 kids opening a pile of presents. Each present opened was followed by a "fantastic" and there were no moments where we felt like we needed to batton down the hatches.

By all accounts it was a great success, and definitely the way forward in our house. Eldest got the presents he wanted, and we got a Christmas morning to cherish and remember. Who knows, next year we might even sort out the family dinner and post Christmas backlash after days of heightened social demands.

A calmer Christmas

What we learnt

So what have we learnt? Here are my tips to removing the stresses of present receiving

  • Agree on presents and timings of present openings ahead of time. If possible, involve them in the present choosing
  • Spread the word. Let other present givers know what presents are wanted
  • Timing it right. Working out the best time to open presents can make a big difference, especially when around other people. As much as possible we avoided present opening in front of other people, as often the first reaction to a present can change over time. We also try to chose times when we don't have to go anywhere, and eldest is calm. Present opening in a hurry, or when we are about to go out always seems to lead to challenges for us. 
  • Spreading it out. The best thing we have found it to spread out the gift opening, otherwise the excitement/ dissapointment of too many presents in a short time can lead to emotional overload. By spreading out the present opening, we were able to help eldest self-regulate his present opening
  • Plan for calming activities. After each bout of present opening we planned for calming activities including Lego building, cataloguing Pokemon cards or reading favourite books. Quite often this was linked to the present opened, as we planned some presents specifically as onces that we knew would help calm down Eldest when he got worked up.
  • Enable siblings to open their presents separtely. One of the biggest challenges we had this year, was Eldest wanted to take over Youngest present opening and presents. He struggles when she gets something that he is also interested in, and will often try to take the toy off her. Next year, we will be working out how Youngest can open some of her presents separately so that she doesn't immediately need to defend it from her brother. 

Have you had strategies that worked for you? If so, I'd love to know for next year. Please let me know in the comments below. 

Something wondrous happened recently. I was sitting staring at a blank page, thinking about what to write for my annual performance appraisal when Eldest walked in wanting to know what I was doing. His advice not only showed me how much he has learnt about what it takes to engage other people in the past year, it also helped me get a start on my self-assessment.

lego superhero art of the brick exhibition

Lego, superheroes and an autism friendly session. You couldn't have found a more perfect exhibition than Art of the Brick for my 7-year-old son to go see.

The exhibition, which is being hosted in London near Waterloo and is advertised as the worlds biggest Lego exhibition, is a collection of Lego DC Superhero characters which runs until early September with another autism friendly session at the end of August. 

I was so excited when I first read about the exhibition and even more so when I received an email from Autistica that they were having an autism friendly session at the end of each month.  And we were not disappointed.

It was everything we could have hoped for and more. The family loved it. It was interesting, calm and well laid out.
even superman wondered about being normal #autism

Recently my 7-year-old son mentioned that he was "learning to be normal", and this broke my heart. Since he was diagnosed with autism at the age of 5 we have chosen to be open with him about autism and what it means for him.  Hearing him talking about learning to be normal is the complete opposite of what I had hoped for.

Shortly after his diagnosis, we explained to him that his brain thinks differently and that sometimes he needs a little extra help in the same way that some people need glasses to help them think. We wanted him to grow up to not feel ashamed or embarrassed, it is who he is - no big deal.

As a family, we face many challenges as a result of his challenging behaviour. This we address by learning how to best support him, and working out his needs so that we can work with him (and school) to develop the skills he needs to learn. Whilst I wish away the challenging behaviour every day (especially the moments when I am at my wit's end), I have never wished him to be normal.

For the past two years, he has viewed his autism as a superpower. He will often talk about his autism eyes (he is good at picking out details) and his autism brain. In fact he was so self-assured that he once told me that autism people are special and his autism is very autismy.

You don't understand autism people. Autism people are extra special, and my autism is very autismy
-- Eldest (aged 6)

Is his statement "learning to be normal" the first sign that he is starting to think differently about what autism means for him? Or could it be that he is starting to become aware of the perceptions of the people around him?

In Man of Steel, Clark Kent struggled at school with sensory overload and the knowledge that he was different. Are we heading for a moment when, just like Clark Kent, he will start to struggle with who he is and what it means for him?

We can't control the world around him and we can't stop people making comments. We can't hide him from the rest of the world or wrap him up in a bubble. We also can't make him see his autism as a positive, despite what other people say. So what can we do?

As I wondered about this, I came across another great insight from Brene Brown in her book  Daring Greatly. It was the chapter about parenting. In the book, she talks about children's shame and how parents can help reduce their child's shame through normalising. This means showing them that they are not alone in their struggles and highlighting having faced similar challenges.

As I read through the chapter, I realised that my goal was not about teaching my Son how to ignore name calling or feeling different. It isn't even about me trying to make him feel better, or have a chat about being normal. After all, what is normal?

It is about helping him to normalise his autism.

He is not alone. We need to show him that there are many other children and adults who also have autism and even more people who struggle with the thought of being different. We need to ensure he is able to meet other children with similar profiles and interests to himself, and help him to make connections when possible.

Highlighting our own challenges. We need to be open about our own struggles. The times we have been hurt by things other people have said about us, or have struggled to fit in. We also need to talk about our own challenges with managing our emotions, coping with unexpected change and accepting another person's point of view.

If we can successfully support him through the challenges he will undoubtedly face and show him how others have been in a similar position, then maybe he will continue to embrace his autism as his superpower and will not feel the pressure of needing to learn to be normal.

For us autism is normal, and one day I hope that my Son will feel that way too.

Spectrum Sunday

Powered by Blogger.
Back to Top