A journey of healing

I wake up to the burning sensation in my stomach.  I clutch it, curling into a ball.  2am. I close my eyes, willing myself to breathe in, breathe out.  Please, brain, don’t go into overdrive tonight.  Breathe in, breathe out, breathe in, breathe out.  I feel the rise and fall of my burning abdomen. What […]

View from a bed

I’m in bed.  Recuperating from a hysterectomy. I have a way of downplaying things that happen to me.  I tend to speak about seemingly big things like they aren’t big things at all.  I think if I do this I am in effect minimising the magnitude of what has happened to me. I downplayed my […]

Autism + Siblings {It’s not always pretty}

Autism + Siblings

It was Miss J’s birthday a couple of days ago.  22 years.  Where on earth does the time go?

In the lead up to her dinner at a local Thai restaurant, I found myself reflecting on being a mother to her and what it was like for her to grow up in our household.

We try so hard as parents not to screw up our children.  We so desperately want them to remember their childhood with fond memories, all warm and fuzzy of what an amazing time it was.

It wasn’t for her.

Master J has autism.  We didn’t know he had autism.  We were told it was ADHD and that with proper behavioural management his unbelievable outbursts and rages would improve.  They never did.  And Miss J was usually caught in the crossfire.

Just let him watch the program he wants, Miss J

Don’t annoy him like that Miss J

For goodness sake, don’t sit in HIS chair, Miss J

Like any child on the spectrum, Master J had sensory issues.  He needed to control his environment to manage those issues.  None of us knew this.  We were just acutely aware of the rages.  Things flying across the room, walls being punched, the kicking, the biting and the screaming.  We, meaning I, would do anything to avoid it.

And Miss J copped the brunt of it.

I am still angry.  Angry that the misdiagnosis not only robbed Master J of early intervention which would have given him a much less anxiety-driven life right now, but also a better childhood than Miss J got.  She deserved so much better.

You love Master J more than me!

The words slapped me in the face.  How could she say such a thing.

You always let him have whatever he wants.  You always make me give up everything.

I denied it, of course, unable to face the reality of it.  Looking back, it was true.  Not the I loved him more than her part, that is absolutely not the case, but the part about her having to give up everything, that’s true.

Miss J has mentioned her childhood a couple of times recently.  She is dating a wonderful guy who also has a younger brother with autism.  They have been comparing notes, supporting each other in what is very often a lonely existence for siblings of children with autism.  It has clearly brought up some unresolved issues for her.

At the birthday dinner it came up again.

Mum loved you more

Damn straight, Master J responded (this is a usual response for him to a range of things)

I had to step in.

I don’t love either of you more than the other.  I love you both the same.

Nah mum, you know you love me more.  Master J said.

I don’t J, I love you both equally.

Well, it didn’t feel like it, Miss J said, he got away with everything and I got nothing.

My heart broke.  A thousand times.  I could never give back to her that was so rightfully hers.

I had a dilemma.  I wanted to deal with it, right then.  I needed to acknowledge her pain, yes, in front of everyone.  I needed to let her know that I understood.  But Master J was there too.  I didn’t want him to be left feeling like he was a bad person for what he had put her through.  But the reality was he hadn’t put her through it at all.  I had and Mr C had.

I know it was hard Miss J.  It wasn’t easy.  Dad and I did all we could to avoid Master J’s outbursts and rages and that meant you missed out on so much.  I know it affected you so much.

I felt so awful saying this in front of Master J.  I was so torn, as I always have been, between his very special needs and the very natural needs of his older sister.

The trouble is that we didn’t know that Master J had autism, we had no idea.  We had no idea how to cope and so we did the best that we could.  It wasn’t enough sometimes, but it was the best we could do.

Master J went very quiet.  Miss J just looked at me.

It just wasn’t fair Mom.

I know Angel, it wasn’t.

Mr R, the boyfriend piped in how awful it was for him too, growing up with a brother on the spectrum.  He used the word ‘horrendous’ and whilst I knew he meant it in the best possible way, to support, to show solidarity, I shuddered.  Master J by now was very quiet.

But you know, Miss J, there were a lot of good times too.  Like how you and Master J would dress him up in your outfits.  I have some wonderful photos of Master J in your dresses and even a bikini.

Burn them!!! Master J cried and we all laughed.

Plus, despite it all Miss J, you were so protective of him, loved him so much.

Still do, she said.

Dad and I should have, could have done things so much better, love.  We just weren’t armed with all the facts.

The conversation needed to end, so Mr C changed it and the evening continued as usual.

That night, at home, I worried how Master J had taken the conversation.

Did you think we were saying you were a bad person?  I asked him.

A bit.

We weren’t Master J.  You are an amazing person.  But your autism, when you were little, meant your ability to communicate was impaired.  This caused you to not be able to communicate what you needed and so you would rage.  Miss J often caught the brunt of that.  You have autism, that is a fact, but it is how Dad and I handled it that was at fault, not you.

He nods.  I know he is processing.  His self esteem is so fragile, so very fragile.  Please god do not let it be broken.

Mr C says he is going to speak to Miss J further about this.  It is clearly an issue for her and we need to let her know how very much she is loved, how we are aware that her childhood was not easy, but that as parents we did the best we could.

And that is the crux of it, isn’t it?  We try so hard to do the right thing, with the information we have to hand at the time.  When I was pregnant, feeding had to be 4 hourly and nothing else, now attachment parenting and on-demand feeding exists, with baby led weaning.  It all feels so foreign.

All we want as parents is to bring up children that are relatively happy, and able to contribute to society in a way that is meaningful for them.  I think – I hope – we have largely achieved that.

Miss J and Master J are incredibly close.  Miss J is a young mum who is fighting very hard to live life on her own terms.  They both have incredible sense of justice and cannot abide any injustice in the world.  I could not be more proud.  And since I am their mother, I am exercising my right to take some credit.

Being a parent is hard enough.  Mistakes are okay.  And it is never too late to put things right.

Much love,

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Know thyself

I’m studying for all the wrong reasons.  I know this, yet I bury my head in the sand and pretend I don’t know, pretend that I love it and can’t wait to hold that degree in my hand.

I’m lying.  Truth is I am hating it.

I’m doing it because I need a sense of achievement.  My sense of self worth is inexorably tied into my sense of achievement – I have not achieved anything ergo my self worth is shite.

I am studying so I can say I have got a degree.  The truth is whilst I enjoy absorbing new information very much, I totally abhor the process of studying – the endless readings, the cramming for an exam.  My stress levels just simply do not cope.  And why don’t they cope?  Because unless I am getting a distinction, I don’t feel like I have achieved anything.  A pass, or credit is just not cutting it.  It’s a vicious cycle.

On a rational level, I know this is crazy shit.  There is plenty I have achieved but ask me to list them and I cannot.  Anything that comes naturally to me does not feel like an achievement since I have not had to work for it.  That feels like cheating.  An example of this is my writing.  People tell me that they love my writing but I don’t feel like it is an achievement because I just boot up the computer and write.  I don’t craft, hone or do much else.  I edit a bit.  That is it.  Honestly, what you see here is just me on the page, directly from my heart.

People tell me what a wonderful mum I am, how patient I am with Master J and the behavioural challenges that come with his autism, how well I handled becoming a grandmother way too early (by our standards these days, not by the standards of 50 years ago).  I don’t feel that is an achievement.  I am their mother.  It is my duty to be the best possible mum I can be for them – and there have been times when I have failed miserably.

I am a recovering alcoholic.  There were times when my drinking totally impaired my judgement.  Like the time I let my 16 year old daughter go to another party with her two friends that were in my care with people I did not know.  It didn’t end all that well and those two girls’ parents still think I’m bad news.  I cringe at that night, and am grateful that it didn’t end up much worse.  And I thank the universe for my sobriety today.

I have this need to be seen as a good person, an accomplished person, someone who has some other defining definition than wife and mother.

I am studying for those reasons and those alone.  And they are the wrong reasons.  Unsustainable in every way.

Yet, if I walk away, I am a failure again.  I have yet to finish a course – a string of incomplete courses trails behind me, all attempts to ‘find myself’.

I am stuck.  Unable to move forward.  I have no place.  No niche, no passion, no special gift.  I am just me.  And I have no fucking idea why that is not enough.

Simplicity.  It is something I crave.  I have lived a life of chaos and I am tired.  I want to bow out.  I want some peace of mind.  I want to be okay with just me.  I am tired of trying to validate the very air that I breathe.

I cannot do this any more.

Steven Covey said in his book “The seven habits of highly effective people” that we all have scripts, handed down to us from our upbringing.  If we have been handed a bum script, he says, we have the ability to tear up those scripts.  Our fate is in our hands.

I am really struggling to tear up my script.  Truth is I really like being a wife and mother, but because I was ‘brainy’ at school there was an expectation I should do something academic.  I went to university when I left school, doing science, which I hated and dropped out.  I have systematically dropped out of everything ever since.

Don’t study, you might say.  Well, that is all well and good, but I don’t think I have made it in the parenting arena either.  I avoid Mummy Blogs for this very reason.  I cannot stand those wonderful photos of carefully baked goodies and meticulously decorated party rooms, or the x/52 photographs of their younger ones, highlighting everything I feel I never was.

Honestly, parenting was difficult for me.  I love, nay adore, my children and have a great relationship with them now, but as they were growing up, I found it somewhat draining, largely because I wasn’t really ready to have them when I did.  I had yet to find myself, and now I was being asked to guide another human being.  It was tough.

But my value, my core value, of being a stay at home mum was strong.  I had grown up with that and wanted to do the same for my children.  And subliminally it was expected I would, despite my apparent academic prowess.

Except I sucked at it.  Hated housework, and cooking.  Loved crafting.  Could do that for hours.  Sometimes I forgot to give my kids lunch because of it.  I bench marked myself against my mom who was a domestic goddess.  In my eyes, I failed miserably.

So I started doing courses – to fill a void, to help me find my place in the world, to find something I could say belonged to me and at which I was REALLY good.  Nothing could hold my attention for very long.

Then I found blogging.  I love blogging, but honestly, it’s a competitive world out there this blogging thing.  My god, how competitive it is.  I don’t stand a chance.  No niche, no special talent, so no hope of any financial independence.  But I love writing.  Just to connect.  Just to say to the world, “Look at me, flawed in every way, but I am here, doing my thing. And that is okay.’

I’m desperately trying to tear up the script, to be okay with who I am.  I cannot give up.  I cannot stop until I find my peace.  I just don’t think this studying thing is it.

Signing out,

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I have a dream

Have you got a dream?  A dream that is so big you worry that you may never achieve it?

I have one.  It has been with me for quite some time now.  It stemmed out of my love of books, and especially book clubs.  Book clubs are way too thin on the ground for my liking.  I’m not talking about online book clubs, though they certainly have their place.  I’m talking about book clubs where people meet in person and get to talk and connect and laugh and cry and share.  Books, words really, have an amazing way of bringing people together.

The power of words to connect should never be underestimated”

Yes, about the dream.

My dream is to own a bookshop – a risky business in this world of online books and living in a country where hard copy books are incredibly expensive.  But I don’t care.  It’s my dream.

This bookshop will be unlike any other.  In it will, of course, be lots of books.  But it will also run book clubs, poetry evenings, author events.  It will run philosophy evenings where people can come and debate the meaning of life.  It will have a coffee shop, that brews amazing coffee, that encourages people to grab a book and just be, just for a while.  There will be a “donate-a-book” section so that people who cannot afford books will still have access to them, because who of us doesn’t have books in our shelves that we are simply never going to read again, and some we have never read at all.

Location will be key.  Think sanctuary from the hustle and bustle of life.  I’m thinking a couple of meditation evenings thrown in for good measure.

There will be big leather seats that envelope you as you settled down to read those words, and escape to a world that enthralls.  A roaring fireplace is a given for those wintery days and nights.

Is it too much to imagine a space for classes on calligraphy and letter art, permaculture, paper art, wordsmithing and more?  I think not.

I like to escape to this dream every now and again.  I imagine my shop, full of people, absorbing words.

I, of course, got the idea from a book.  A couple of years ago my husband bought me a sony ebook reader.  The first book I downloaded, whose name can you believe it eludes me right now, was about a woman who had divorced her husband and decided to move down to the coast.  There she meets a man (of course) who owns a second hand bookshop filled to the brim with books he had been collecting over the years.

I wasn’t so much interested in the love fest as I was about the book shop and the stories that it told of the other characters of the book.  It was a hub, a meeting place, where people came to belong.  And that is what I want, my own sense of belonging, and to give other people that sense of belonging too.

Of course, I have absolutely no idea how I am going to get this idea off the ground.  Apparently, it is a very risky business, this bookshop thing.  Nevermind.  I’ll keep working on it.  I have the name and the domain name, you know, just in case.

What are your dreams?  Make them as big as you possibly can, because, you know, you are SO worth it.

Much booky love,

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