The Summer Holidays when living with Autism.

To go with the beautiful weather we’ve been having here in the UK in the last few weeks comes the school summer holidays too. Now I know what some of you are thinking and it goes a bit like… “Aaarrrggghhh No, what am I going to do for the next 6 weeks / How am I going to keep my child happy out of the routine of school / Where can we go that isn’t full of people, is safe and secure for my ‘runner’, is not a sensory overload from the noise of other children… “ and the list could go on.

I understand. I’ve been there too and the thought of the next 6 weeks could be enough to throw the whole family into a state of fear and dread. But you know it really doesn’t have to be that way.

Tommy is 8 now and the last 4 years of summer holidays from school I have been in exactly that state of mind, and to be completely honest it does come back into my thoughts quite frequently now as we enter this one. However, I have made a commitment to myself, to Tommy and to the family that I will embrace these school holidays and take the gift of this time I have been given to spend with him and make it count.

So does that change everything? Does just thinking ‘it will be great’ instead of ‘it will be awful’ change anything at all?

In my experience of times when I have made that shift in my thoughts and beliefs in other areas of my life, yes it does make all the difference. It doesn’t necessarily change the options you have about what to do or where to go (although it can help as I will explain later), but it does create an expectation of how things will be and that naturally sets us up for better things to come into our lives (and our school holidays!).

Put it this way. Have you ever thought that something is going to be dreadful and it turns out just as you expected? Have you ever thought (and truly believed) that something is going to be fun and fabulous, and it turns out just as you expected? It happens all the time and it is a natural law of nature that we will attract the things that we are thinking about the most in terms of how things are going to turn out. Some people call this a ‘self- fulfilling prophecy’ and it works like this:

When we think negative thoughts or have negative beliefs about how things are, it creates negative expectations in our mind. These in turn influence our behaviour and we do things that are self-defeating because the part of us called our ‘ego’ wants to be ‘right’ more than anything else. When we go around with self-defeating behaviour we end up getting a poor outcome or result, and you know what? We end up being right about our expectations and our beliefs that it was going to be awful.

Now think about it this way. When we think positive thoughts or have positive beliefs about how things are, it creates positive expectations in our mind. These in turn influence our behaviour and we do things that are self-motivating which in turn results in a great outcome. Again, we end up being right about our expectations and beliefs about the situation.

So tell me. Which would you choose?

Is it really as simple as that? Yes it is that simple, but not necessarily that easy. We are creatures of habit as the saying goes and it is very true. Our lives are governed by the habits we’ve created for ourselves and if one of those habits is negative thinking then this can cause all sorts of problems in all areas of our lives. This can be cured though! All it takes is 21 days of consistent action to form a new habit (and I’ve just thought of another blog post which I will write soon on this very thing). In a nutshell though it’s about practice and re-training (or un-learning).

So back to the thought of the summer holidays and the next 6 weeks before the next school year begins again. I have a choice to make, as do you.

I cannot change the fact that Tommy is now off school for 6 weeks and it is totally down to me to plan this time out. I cannot change the fact that most places where children can go to play, be entertained and use up their energy are not appropriate for him which makes our choices more restricted. What I can choose though is my thinking about it and how we can begin the holidays with a positive expectation which will make the time more enjoyable. Plus, positive thinking comes with a great bonus too. When we expect great things to happen, places to go, things to do, invites and opportunities to spend the time will come to us out of the blue.

So go with the flow. Have a great expectation that the next 6 weeks will be full of fun and fab times. Enjoy your summer.

With love and gratitude

Nadine.

Quality of life. What is it? How do we know when we have it?

Everything we do we do to try to get a good feeling. That is what we ultimately are after as human beings is to feel good feelings.

Many say they strive to be happy – but it is actually the good feeling that happiness brings

Many say they want certain things, like cars, houses and other material stuff. What they are after are the good feelings they believe these things will give them.

Many strive every day to make money, often the more the better. What they are after is the money to buy things that they believe will make them happy and give them the good feelings.

However a few of us know that what really gives us good feelings is simply allowing ourselves to feel good by choosing to feel good.

In the dictionary there are 15 descriptions of the noun ‘quality’ however in this context the one that is most relevant is “A character or nature with respect to fineness, superiority or grade of excellence that distinguishes something”

What comes to mind for you when you think of quality? If we believe what the advertisers tell us then maybe a large detached home, a high-end car and expensive clothes are synonymous with quality. Or does Quality just remind you of chocolate! But can you only have a quality life if you have these things? I don’t think so.

My take on the above dictionary definition is more “the nature of how we live in a way that has a grade of excellence to it” But one person’s definition of excellence can be another’s nightmare. So who says and what defines what is excellent in my life or yours?

For me the quality of my life all comes down to how I am feeling. When I have good feelings I can say I am happy and life is good .When I am not feeling so good that doesn’t mean I do not have quality of life, it just means I’m not feeling good.

Our feelings and emotions are the real currency of what is going on for us and determine our quality of life.

So what makes me feel good and what makes me feel not so good?

Let’s take the emotion called ‘Happy’. Now as we’ve grown up we have learnt some ‘rules’ about what has to happen to make us happy. These have come from our parents, friends and family, educators and all kinds of other people that have had an influence in our life. We have learnt that when these rules are met we can be happy. For example the material things I discussed before may be a rule we have created that puts a condition on our happiness. It’s the “I will be happy when…. syndrome” that many of us believe in and that the marketing that bombards us every day re-enforces. They say, “buy this car and you will be happy”…

But really? In this consumer world it can certainly bring some happiness, but it isn’t really sustainable because you have to keep buying new things to keep that sort of happiness up.

What’s your rule for happiness? Put another way what has to happen for you to be happy?

If I asked you to feel happy right now could you? If you have ever been happy in the past then you know what it feels like, so can you access that feeling right now without anything ‘making’ you happy?

How easy have your rules made it for you to be happy? Just a hint, but if your happiness is conditional on certain things then you haven’t made it easy.

Now let’s take the emotion called ‘Sad’. We will have rules about this too, so what has to happen for you to feel sad? Is it easier for you to feel it than happiness?

If I asked you to feel sad right now could you? Can you access that feeling right now without anything ‘making’ you sad? If your sadness is unconditional then you have made it easy to be feel it more often.

There are many feelings and emotions we can choose from, but are we really choosing them or are our ‘rules’ dictating this for us? Think of it this way. As we grow up we create the script of the life we are playing out. All our experiences are building up this script which defines the role we are to play on the stage (called life). So if we would choose happiness over sadness, but we can only feel sad, it is that script we are playing out and it’s a script that we wouldn’t necessarily choose as it has been written for us by those that influence us.

However, I am not saying that it’s not ok to not feel ok. As a mum with a very challenging son on the autism spectrum my days can be extremely stressful and often start with a lack of sleep. But if I am not feeling ok, then I am ok with that. I don’t beat myself up because I am not full of the joys of spring. I am just ok with not feeling ok and refuse to buy into my script that says I should be miserable.

Ok, lets move on and talk about a chap called Maslow for a minute. Maslow created the ‘hierarchy of needs’ that says that we are satisfied at various levels based on the needs we have met at any one time. At the basic level when our physiological needs are met and we have food, water and enough sleep we can say our needs are satisfied and this can we regarded as a level of quality in our life. However when our needs are met at this level we strive to satisfy the next and hence we move up the hierarchy to meet our need for safety and a roof over our head. Again once we’ve satisfied that we carry on up the hierarchy to get the next level of need met in order to be satisfied, moving through our need for love & belonging, for self-esteem and for self-actualisation. We all meet these needs in different ways, and like emotions we put our own conditions on when each need is ‘satisfied’

So say you have reached one of the higher levels in this hierarchy and overnight you find yourself struggling to meet your needs at a basic level? In trying to satisfy your need for water and shelter would you be as concerned to satisfy your need for a new shiny thing? The thing is as soon as these needs are satisfied again we move swiftly up until the new shiny is the thing that’s required to satisfy us and provide the quality of life we desire (or so we think).

Somehow we have equated this satisfaction of needs in this hierarchy to happiness and quality of life and as we move up we also put more demands and conditions on feeling good about ourselves and our lives.

I believe that the more external conditions you put on your happiness just drives happiness away, and when you remove these you allow yourself to have a good quality of life regardless (to an extent) of your life situation.

What would you prefer? To be happy and loving life with very little or be striving in search of happiness with the next new shiny you want to buy? Let me tell you now, if it’s the latter then you will never get there as the goalposts will keep moving and that isn’t sustainable. You’ll keep telling yourself “It’s ok, I’ll get there!” but you know what… you’re already there and always have been.

Before Tommy was born my husband and I had a typical kind of life, both working and striving to earn more to buy more to be happier. The more we achieved and the more external shiny trophies we were able to buy to prove our success to the outside world the happier we became – well that was what I was led to believe would happen – but it didn’t – and so I thought we needed to strive more, succeed more, get more things because we obviously haven’t got there yet. I know now that we would never ‘get there’ because finding happiness this way is just not sustainable. It’s the sort of happiness that is short lived and only ever creates the need for more and more like an addiction you keep needing that fix to sustain you.

Our world had changed when we had Tommy but his diagnosis rocked our world completely. All the conditions I had programmed into me about what I needed to live a happy and quality life just went out the water. But now I can honestly say, hand on heart, that Tommy has given us the best gift in life, and that is the experience of pure love and wholehearted gratitude for everything we have. He has taught us (and continues to teach us) that our happiness and quality of life comes from within us, not from the outside world.

That does not mean by any stretch of the imagination that our days are all happy, bouncy, fluffy or pink. We have really challenging days with him. He is nearly 9, still in nappies at night, still smearing, lack of verbal or any ‘system’ of communication, is extremely aggressive towards me and we have some sleepless nights. He head butts me, the walls, the floor and in meltdown it is totally heartbreaking to see. He is tall and he is strong and can pin me down and can run much faster than I can too.

But I still say we have a better quality of life than the one we lived before. Purely down to the fact that I can be happy when I choose to be, and I choose to be happy every day. My circumstances, Tommy’s behaviour or anything else for that matter doesn’t need to have a bearing about how I feel. Because I don’t put any conditions on my feeling good, I can feel good often.

Meltdowns, aggression, dealing with all the authorities to get the things we need are all challenging, and if I could wave a wand I would choose not to experience those things. Regardless of these things I can still be happy.

I referred to the gift Tommy has given me earlier and it really is the ability to feel gratitude for everything, to see the beauty when it’s not apparent, to live my life with no conditions on feeling good and to have a quality of life I could only have previously dreamed of.

It takes a mind shift for sure. It takes a lot of un-programming of what I believed to be true. It takes a serious effort to be calm and connected some days. But it is worth it, it can be done and I thank all those on the autism spectrum for showing me a different perspective on life and on the values we hold.

With love and gratitude

Nadine.