Is it full of variety?

Are you able to jump up and go our whenever you want?

What’s that evening class like?

And did you see that film?

Of course not

When you look at the daily round of your life, and if you were feeling low, might there be words like

• repetition
• boring
• can’t bear it
• same old same old
• repeat

Are you tired of seeing that Thomas the Tank Engine video for the 400th time?

Are you tired of not being able to leave the house without a baby sitter, even though your “child” is grown-up?

Are you tired?

Is this what you expected?

I have to confess, I found the sheer drudgery of living with autism (even in the most “exciting” years…) really quite hard to deal with.  Yet in this world, it is hard to complain when we have enough to eat and a place to sleep and if we live in a country where autism is at least seen as a disability rather than abnormality…

So what to do  now

There is the outer and the inner.

The outer is enlisting help, making time for yourself, being inventive with games and so on. 

The inner is finding acceptance, motivation, transformation…

Find creativity within the repetition

Can you “reset” your internal reaction so that each time your child wants to see the same video, its OK and you avoid that slight sinking of  the heart?

Can you celebrate your child each time they achieve their small victories so that you feel that joy too?

How about when you feel a sinking inside you had a way of feeling better, in the moment?

Knowing you are OK

Most of all, it’s important to know that you are OK, to celebrate yourself  for doing the best that you can.

I made a video about this, just a couple of minutes.  Do watch it.

How do you deal with the same old same old?  What are your tips for living a joyful life with autism?

Sometimes it is tempting to moan.

And bitch.

And complain.

Don’t!

However, it is important to move that negative stuff away- all the stuff we want to moan and bitch and complain about.

It doesn’t do to hide it  or come over all false brightness….

So what to do?

Express.

Release.

Clear.

But in a “held” and controlled way.

What do I mean by that?

Clearing the shade

Everything (and I use absolutes with care) has a dark and a light side.

Think about it.

If you are angry the dark is the distress your anger can cause but the light is that your anger is serving you- it may be a “righteous anger” that spurs you on, or it may be a message to yourself that you need to take time out.  If you stay in the dark by feeding the anger with self-righteousness or by repetition, then you don’t get to feel better, only angrier.

You might sneer at your husband or shout out your kids or not return that phone call from your mother.  (Anger becomes resentment really quickly).

If however, you can own your anger, express it in a safe way which does no harm, then you can learn its lesson and (using the example above), either harness its power to make necessary changes or give yourself a break.

Same with guilt.  Stay in the shade with your guilt and you only get guiltier and that’s ugly.  That’s the dark side.  Own it, witness  it and it stops being the bogie man under the bed and releases power you didn’t know you had.  That’s the light side.

Would you rather live in the shade or in the light?

Putting on the light

The light bulb can’t be on and off at the same time.

The truth is, there isn’t a grey area and yet we are complex human beings.  When we are in the middle of something it all seems mixed up.  But

when you start identifying parts it all gets easy.

When you break down things into parts it stops being overwhelming and starts to be doable.  You can start putting on those light bulbs one by one.

For example, if you are angry, there’s the anger and there’s the trigger.  Clear the anger and you are able to look at the trigger clearly and do something about it.

For example, to take an example from my own life, I used to get triggered when my ASD daughter wouldn’t (note the language here) hold her head in such a way that the shampoo wouldn’t run into her eyes.  The fact is, the way she feels her body doesn’t include really being able to tell her neck’s angle!  Just too difficult for all sorts of reasons!  I knew my irritation was unreasonable but it kept coming up when it was washing hair time…not nice for either of us.  And of course I felt guilty for getting irritated with something that she really had no control over.  When I cleared my anger in a safe way (ie not at bath time and not with her), it became clear that its real cause wasn’t that my daughter wouldn’t hold her head properly (!!!!) but that I didn’t want her to be hurt.  The irritation came from love.  Well, that made sense to me and since then, because I wasn’t in the shade at bathtime, it has become perfectly easy and fun.

This example is so tiny, yet that is why I used it.  This is everyday stuff.  This was such a small irritation that I never even thought to mention it to anyone, ever, yet it affected an everyday sort of activity.

Think about what can happen when we stay in the shade with more important stuff?  Ugly.

So clear your shade

Check out this post and it tells you how.

Or get in touch with me and we’ll talk.

Light or shade? your choice

or who think there is no hope

or that there is hope but it seems a long time in coming

who are tired

who are depressed

This is for you

All those hours of research

the special menus

the reading of blogs such as this one

the cajoling

the patience

the learning of new skills (and that’s just you)

the finding yourself in a club to which you didn’t apply

it’s worth it

We all know that fully embracing what it means to be a special needs parent can help us grow.  We discover new ways of seeing the world.  We learn to be more tolerant of difference.  We stretch and learn and do things we never knew we were capable of.  And sometimes that’s enough.  We accept our children as they are and we love them and that is enough.

And then they grow!

not upwards or outwards but internally, learning those skills which are so hard won

the conversations of more than one loop

the catching of a ball

a dry night

a test passed

“I love you”

And then they grow some more…

This morning, my girl, my big 18 year old girl, invited me and her step-dad to a magic show. She has been to see three circuses this summer, so she was full of inspiration.  She won a colourful baton at the fair so she had her prop.  She has been asking all sorts of  “is this real or pretend” questions, these past few weeks, so I knew her mind is whirring…

But this surprised me

Her magic show comprised her singing and dancing and twirling…moving her baton in a cross-patterning way through and around and across in a way I have spent hours practising with her but never seen her spontaneously do.  She threw herself on the floor and used my elliptical trainer to get herself high.  She used her whole body all around her.  She matched her movements to the song, from Pocahontas to the Blue Danube. She curtsied and bowed to the whole audience all around her, real and pretend. She brought it all together in a neuro-surge of growth and she loved it.

And so did we.

So I am celebrating

all those times I wondered if it was worth it but carried on anyway

all that money I still have on my credit card

all the education that seemed wacky and worked

or seemed sensible and didn’t

all that playing

all that pretend

and all those jigsaws

even the jigsaw we are doing today

it was worth it

it is worth it

and everything you are doing is worth it too

Do you load that washing once too often into the machine?

Do you live your life on auto-pilot?

Have you lost some creative spark?

I know when my children lived at home I used to get overwhelmed with the sheer amount of stuff to do.

And of course the only practical way to do  a lot of “stuff” is to do it on auto-pilot.

This works for loading the machine, folding the laundry, doing the shopping, cleaning the house….

What happens when you parent on auto-pilot?

Auto-pilot is helpful for household tasks but what happens when you parent on auto-pilot?

Do any of these scenarios seem familiar?

• your son isn’t doing his shoelaces up again and you sigh again
• your daughter has smeared poo again and you shout again
• your husband forgot to put out the trash again and you made that snide comment again

OR

• your son isn’t doing up his shoelaces again so you do it for him again
• your daughter has smeared poo again and you go away and cry again
• your husband forgot to put out the trash and you cut off a bit more again

We all do auto-pilot.  They are called habits.  We need habits.  You need habits.

Habits can kill – beware

A strong statement but let’s look at habits of mind and behaviour…

It’s one thing having a habit about how to do the laundry.  That is useful.

But if you have a negative habit, a habitual reaction to the stresses in your life, (and we all do), then it only solidifies over time.

A casual cutting off from connection with your loved one in the early days of your relationship can become hard bitterness two decades later.

A small irritation when things don’t go your way can become inflexibility in all areas as time goes by.

A touch of “it’s not fair” as a child can become a real problem if you take that victim mentality into adulthood.

The good news is we can change these habits of mind

Often times our sense of identity seems solid, “that’s just the way I am”.

We don’ t realise that we are making choices all the time.

Every time we get a negative feeling around our child, or ourselves, or our partner, or anything….we are making a choice.  It’s a choice driven by our beliefs about how life is, which we have built up over time in response to life as we have experienced it.

But those beliefs are not set in stone, and they don’t take decades of psycho-therapy to sort out.  They are right there, in our heads.

The first step is to listen to what our minds are telling us.

• “it shouldn’t be like this”
• “this is too had”
• “Things will never be OK”
• “I have to be an angel”
• “I’ll never get to rest”

This is huge.  HUGE.

When we really get the stories we are telling ourselves about how life is….well, don’t you want a happier ending?

Don’t you want a change in the endless repeats?

Don’t you want freedom and hope over being driven by the same old loops?

Of course you do.  And you can.

Why not take a quiet moment and think about what your mind is endlessly spinning…

(Watch out for the odd sock)

That is when it gets really interesting…

We don’t talk about sometimes hating the “baggage” they bring with them (I just noticed censoring myself writing, “Sometimes hating our Child” – too much, too harsh, too open to misinterpretation).

We talk about supporting our Child: we will do whatever it takes.

We don’t talk about sometimes being so tired of our caring role we want to throw it out of the window.

We talk about giving our all.

We don’t talk about having run out of things to give.

We talk about understanding their behaviour as a clue to their needs.

We don’t talk about how their behaviour is simply sometimes too much, driving us crazy.

We are dry.

We are tired.

We would like to be an Angel, but today the Devil has the upper hand…

We want a moan.

We need to complain.

And sometimes, some of us do- over and over…It feels so good that  sometimes we even get attached to the role of the suffering parent…there is a payback in the admiration of other people, “Oh I think you are marvellous,  I don’t know how you do it…”.  It makes sense of the hand life has dealt us.  We can put on that identity like a cloak.  Special Needs parent/Special Parent. Thank you very much.

The problem is…

Moaning with no context, with no realization that we are moaning,  goes nowhere except to increase  negativity.   Moaning and complaining feeds on itself.  Being a victim becomes a beautiful place. one without responsibility – “Oh you poor thing..”

And not only you,but your child suffers too.

But I know you don’t do that .  I know (and I am not being ironic)  that the people who read this blog are good people doing the best they can.  You are doing the best you can and that includes not indulging in a moan fest…

And…But…

Sometimes it is good to let it out,  to give voice to the negative, to speak our exhaustion and our judgements.  Sometimes it is good to say, “This is too much”.

Because when we acknowledge the reality of  how we we are feeling in any given moment, it gives us a chance to move on.

Instead of telling ourselves off – “Oh, I shouldn’t be thinking this.  I am meant to be a great Mum,” why not say, “This is how I am feeling…..”,  really know that it is OK to be feeling that, and move on.  Let it go.

Readers of this blog know that I use a wonderful tool called EFT to do this….it is  a way of  “telling the truth”, clearing the negative and so being able to move into the positive and creative action.  Perhaps I could say it is a completely healthy way of having a moan!

The difference between being inside a moan and acknowledging a negative is the difference between healthy and unhealthy parenting.

The first is like an overgrown garden, full of weeds with no light for the flowers to reach the sun.

The second is a garden where we  clear  the weeds, so that the flowers, our children, can be nourished and thrive.

We will always have negative stuff going on.  There will always be weeds. The trick is to recognize them and clear them.

Then your flowers can grow…

So he summoned the wise men (the wise women were in the hills  gathering herbs) and asked them, “How  can I find the most beautiful jewel in the world?”  And they answered, ” First you have to decide what you call beautiful…”  “Well of course it will be the biggest, shiniest jewel and I will know it when I see it.”

So they told him to journey far and wide, along rivers and up mountains and to keep his eye on his goal and  he would be  sure to find what he most desired.  And he set off with a merry heart, looking forward to giving his bride his prize.

One day, as he travelled,  he caught sight of a lovely glade of bluebells in the woods, gleaming purple in the dusk…”No”, he thought, “They are not beautiful enough.”

Another day, he spotted some irises by the river bank. “Oh no, these are not beautiful enough…”

And so he went on….Once he heard the laughter of children as he passed them playing and once he saw a young man carry the load of an old woman  and once he saw the bloom on a fresh apricot..but he could not find his jewel.  Nothing was big enough or shiny enough.

After many years he grew weary.  He had travelled enough rivers and climbed enough mountains.  He decided to go home and marry his bride.

But when he returned he found his bride had tired of waiting for him and had  found another.

“Why did you not wait for me?” he said, “I went to get you the most beautiful, biggest, shiniest jewel in the world!”,”

“Ah,” she said, ” I know you meant well.  But while you were  travelling the man I married looked in my eyes and said, ‘Here is the most beautiful jewel in the world’ and he gave me bluebells and the laughter of children and fresh apricots…”

So the Prince went to his wise men and was angry, “Why did you send me out into the world when all along what I wanted was right here?”

And they said, “We told you you had to decide what you called beautiful…”

And the Prince pondered, and resolved never again to miss the laughter of children or the bloom on a fresh apricot.

I just made a transition.   I rearranged my bedside “things” – my book, my clock and so on – by the side of a new bed.
Yesterday I came back to Turkey where my husband lives. So there was the transition of flights, trains and taxis.
Before that I was two weeks at home in Scotland. I had the transition back to hands-on Mum when I brought my ASD daughter home for a long weekend away from her Care Home. My focus shifted right back to jigsaw puzzles and meal times on the dot.

Before that was the transition of her going to live in the Care Home, only home for 10 weeks a year (that was the biggest one!)
Before that was the transition from mainstream school to homeschool…

from both children at home to one at home..
from regular diet to special diet…
from paid employment to self employment…
from single to married…
from pre-diagnosis to post-diagnosis..
from married to divorced…
from before children to after children…
from city to country…

And in all of these huge huge transitions a transformation was required…an adjustment…

I had to rewrite the story of who I am.

I had to find a way of becoming the person the new situation required so I could be my best possible self.

Of course, we all have this learning, whatever our life circumstances. And yet, being the parent of an ASD child requires certain disciplines of transformation. As our children dig deep into their need for predictability, we are required to become more and more flexible.
We have to hold the overall picture while being able to adjust on a constant, daily basis.
We have to see the journey to the butterfly while our children are still in chrysalis, and know that the butterfly is already there.

And we have to do that for ourselves too. To be able to make the big transitions means we have to be happy with everyday flexibility. To allow our children to grow and emerge means being able to do the same for ourselves, while at the same time creating a safe, predictable home…

The big transitions are not easy.  Letting my daughter go was at the same time the best and the most heart wrenching thing I have ever done.  (I am not saying this answer is for everyone,  it is right for my daughter).

So how can you make transitions easier for yourself?

I believe it lies in the way of finding the balance between the security of the everyday and the willingness to be flexible.  And to practise small transitions so that the big ones are easier.

So if your child is going to change schools for example, you have a protocol in place to try and make it easier for him.  You take him on visits, you show him the new route and so on.

How about you do the same for yourself?

You practise small transitions to make the bigger ones easier.

So if your child is going to a new school with all the attendant anxieties that brings, why not try seeing it as a “practice run” every time you leave him with someone else for example.  That might be with someone or at a place you already feel secure, but if you say to yourself, “this is about leaving him with someone else and it’s OK”, you are laying down muscle memory to help you when it is not so easy.  You have practised.

Even if she is going out into the garden on her own, (or another place where you are pretty sure she will be safe and you feel totally OK about it), practise feeling this as a transition, a letting go.  Being aware that you are at one end of a spectrum yourself- the parenting spectrum, where you have responsibility for both keeping your child under your wing and nurturing their growth.

If you then notice your small anxieties and deal with them, it helps prepare you for the bigger ones.

I remember leaving my daughter at a respite centre for a weekend for the first time, as practice for her before going away for her two week “audition” stay at the Home.  I realised that it was just as much a practice for me.  I was beside myself with anxiety.  I sat in the car and tapped and brought down my anxiety to a place where I could enjoy my own weekend.

So my advice is retrospective!

I realised afterwards that I could have made my life easier by doing what I am suggesting above.  But I had been so caught up in making sure everything was OK for my daughter I hadn’t taken the time to notice what was going on for myself.  (I don’t think I am unique in this!)

If I had taken the practising back even further to see that all separation from me, even to another room, was on the continuum of allowing her to grow up and make those transitions herself…

And there is always the familiar to help us make those transitions – the stuff on the bedside table – to help root us when all around is change.

Change happens.  We know that.

And change happens for your child, even though she does her best to make it predictable.

Security and flexibility…both are needed.

So baby steps.  Small steps.  Everyday steps.

So that when the big changes come, you can ride the wave and not be drowned…

I live in Scotland and (very occasionally) I am lucky enough to see a man in a kilt as everyday wear…one of my daughter’s school teachers always wore a kilt which I thought was incredibly romantic (he was a good teacher too) and I sometimes see the grandfather of a local ASD girl swirling proudly around town, bandy legs on show for all the world to see.

So when I had a vision of tartan, which I did, I knew that it probably came to me because of where I live, but also that that there was a deeper reason.

This vision of a tartan came to me as I was thinking about how we live our lives as parents of autistic children.  I always pay attention to the pictures in my head as there is often a real message there.  What on earth could tartan have to do with that image I had of all the things we have to do?

And then I got it.  It is in the pattern.  The overlapping threads…

I saw how the tartan could be a metaphor.  How one thread of your life is connected to another thread and to another and they are all woven together to make the pattern.

How if you pulled one thread out the whole fabric would unravel.

And how each is vital to the whole.

Does your life feel like a piece of tartan?

Probably not.  Probably it feels a whole lot messier and complicated, but that sometimes it might feel as if it were about to unravel.

And if it does, this is what I suggest.

Just pay attention to one thread at a time.  Yes, life can be overwhelming, but trying to sort it all out into a clear pattern all at once can be even more overwhelming…

Take a big picture view of all the threads which feel in danger of unravelling- for example, helping your child accept more foods, having time to go out with another child, a date with your spouse, working a protocol with a teacher – and just focus on one thread at a time.

It sounds so simple.  Do one thing at a time.  But often times we pay lip service to that while still trying to do it all…

One thread at a time

The beauty of focussing on one project to focus on for a specific time, for example a week, is that it frees up head space as you let go of dealing with all the other threads at the same time.

It’s not that they go away.  You just allow yourself the freedom from the expectations and in that freedom you are more likely to achieve your goal with what you are focussing on.

Then you can move on to the next one.

Of course, life isn’t tartan and of course, the threads of your life are interwoven tightly and you have to be and do several things at once.

But if there are several threads in danger of unravelling, why not give yourself the luxury of plaiting them back, one thread at a time?