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Its not about me…

I have met quite a few mothers of boys who have very recently had an ASD diagnosis. I have given my number keen to reach out myself – afterall I am new to the journey too having received a diagnosis for my son just under two years ago. I find myself faced with entirely different scenarios from chats with these mothers, which maybe should not surprise me but it does.

Some seem absolutely fine, no issues, no tragedy in their eyes, no signs of sleepless nights anguishing the past and regretting choices, sleepless nights spent online reading homeopathic blogs from India or dietary advice from.. well just about everywhere, Sleepless night getting fired up from American fighting talk Warrior mom, Let me hear your voice style books and blogs, sleepless nights watching endless diagnosis or cure youtube videos or fruitlessly wading through in-depth medical jargon about the studies into autism or the myth of autism or the epidemic of autism or the MMR link or the leaky gut, sleepless nights AFTER reading blogs by autistics and feeling racked with guilt over the unaccepting useless mothering a wonderful child. I will stop the sleepless night stuff you get the picture. They seem fine, just gonna crack on with what the local authority (such a ridiculous term for a group of people that administer provision) and are just well – cracking on – no problem here.

Who are you and why the hell am I not like you?!?

Tellingly though pretty much all the mums say this or a version of this: “I just care about him, I don’t care about myself” even the ones with tragedy in their eyes.

Hmmm now I have heard this once too many times. I DONT CARE ABOUT MYSELF. Surely that is not great whichever way we look at it. Upon some intense self examination – a rather exhausting, sometimes disabling ocd habit of mine – I think I cannot honestly say that ever again. I think it was all about me spectacularly in those early days, possibly still is – my fears for the past, the future, the present. My battles with the local authority and in my own head about what course of action to undertake. My life plan changed. My day to day completely altered. My patience tested. My thoughts and assumptions blown apart. My world views radically altered. My nights and my brain. Me me me. My lovely son was generally sleeping soundly and living his life in the moment. He seemed absolutely unhappy a times which was of course acutely unhappy to see for us.

I dont particularly judge myself for this selfish-ism – I am interested that I can really lay no claim to many a truly unselfish act thus far.  I would like this not to be true of course but I have just laid before my own eyes the evidence of this very fact.

I remember the early days after I had my first son, who I was up anxiety alley with bless him, and the all the new physical demands on me. One evening after I had tried to get him to sleep after hours and endless hours of rocking and pacing, I put him still determinedly wailing down in his basket, walked out onto our balcony raised my eyes to the black sky and cried “I just cant do this” and I felt the sky answer me back with a gentle but firm “its just not about you anymore”. Amen. I saw the light and went back to rocking my son. I have always remember those words and they have helped me a lot raise three kids with no help, no mothers, mothers-in-law, sisters or aunts nearby to take the kids regularly which has been no picnic in the park everyday. These words help me soldier through the bad times, the dreary monotonous and thankless tasks and the feeling that you are missing out. But this completely selfless assurance surely misses a) the truth (read above) and b) the absolute epic saint task that it would take to really not consider your own feelings. ever.

I have – I should say – categorically thanked God many a time that it was no longer all about me. What a hell-hole I was in when I had way to much time and inclination to think about just me.

No more shame please. Its not about me while i am busy catering but when it is thats cool too – even if it is sleepless bloody nights…

“Honour the autism”

An autism specialist advised me today that we must “honour the autism” in a review meeting. We were having a long drawn out conversation about my son and an impending behavioural plan in the school. I was fully launched into a bit of a rant about why they were rewarding a tantrum on carpet time by letting him play with his beloved Lego.

“…but we must honour the autism” she looks at me searchingly. I open and close my mouth.

That shut me up. I am stumped.

I finally rally after a very long awkward pause. Six eyes penetrating. I’m not sure I want to do that I say hesitantly. A million things whirring around in my head. I know it sounds awful somehow but I buoy myself on with cries of “it’s the truth, the woman is being honest (me) at least even though she feels judged. I would do anything to honour my son but no I don’t think I want to honour the autism.

Its made me think a lot. It’s made me quite cross. Then it made me sad. I put on a brave face but cried all the way home.

What the hell is this autism that we attach to a person? I didn’t want it attached to my beloved son and yes I would like to unattach it if I could but apparently it’s a part of him and it’s not going away. Yes I hear you… it’s not going away.

Do I love it or fight it? Is it my son, part of my son or inflicted upon my son?

Yes I know that me not loving this autism in my son is offensive to those living with its label. I hate that maybe enough to shut up for good except something’s instinctively not bloody ok about it for me. Maybe I am shallow and narcissitic and cannot bear to contemplate my sons life being different from mine, I can see that as a possibility. I’ve been guilty many a time of worse human idealising and frankly crazy behaviour so believe me I know it’s a strong possibility and I could happily accept to move forward but it’s a hard pill to swallow for a parent. It brings fear for the future and anxiety about the past and the worst – failure in the present. Failure to meet my son where he is at.

Actually I can only talk for myself and not much has happened before in my life that makes me question life so much as this journey. Not a harrowing suffering death of a parent, overcoming an eating disorder, birthing three children, businesses launching and failing blah blah. I am very aware that a lot of people are very sure of exactly what they are talking about. It’s pretty amazing just how sure I assure you. I just wish I could choose one of them to believe in and relinquish my captaincy of this ship out at sea.

Just when I think I might be getting somewhere – forming an opinion, a direction, sure that we are doing the right thing, something is helping, is working – I get dumped out at bloody sea again and have to try and navigate myself back to the safe shores of sanity…

To my boys

Not sure why but I felt the need to write this letter to my sons today in case something happens to me.
Hope its not tempting fate…

The things I have learned in my life so far are quite simple and I want you to know them.
In no particular order…

Your truth is the only thing that matters, how you feel and what you think define who you are.
Share your truth, it is beautiful even if it feels ugly to you.

Do not wish you were something else, something better. You can only be you.

Do not ever be the victim. Always know your role and choices you have in your life. If you make a bad choice change it or find a way to make it count. Never ever construct a sad story for yourself as that is what you will live.

If you veer away from your essential goodness – God given to us all – and make mistakes simply ask for forgiveness, share your mistakes but most importantly forgive yourself. Everyone makes mistakes do not let it ever defeat you. But please try to recognise it and not do it again ; )

Get up every day determined to do your best. Go for it.

Never give up and never give in.

Ask for help and support when you feel alone and not great. We all need reminders and we all need hugs.

Always shine brightly, never be afraid of your own beauty, light and goodness. Your successes. Enjoy yourself literally. You get one life – go for it.

Keep people close to you who inspire you and challenge you.

Definitely keep people close who make you feel really good about yourself.

Whatever you do find the magic in it. Find a purpose to it. Do it with passion.

DO NOT WORK. Make a living doing what you love.

2+2=4 only in maths pretty much everything else makes no real sense…

Remember we are on a ball floating in the black abyss – its crazy, magical and weird.

Laugh always. At everything including yourself. Us humans are a funny bunch.

Don’t forget to dance. Like a madman. Dance it out : )

Never lose the naughty twinkle in your eye. You were born with it I assure you and my God I love it.

Look yourself in the eyes in the mirror and give yourself a wink.

Learn the language of the soul, of the eternal and of the universe – it has no words. Just a shared, sometimes painful condition. We all live it. Never be afraid of it. Read the alchemist often.

Always be kind and compassionate whenever you can.

The darkest hour is that before the dawn. Things shift and the light always seems to come back.

What goes up must come down – dont take drugs or drink too much.

Keep it simple.

Always be grateful for what you do have.

Sometimes a bit of money can solve a problem – keep some saved to throw at these particular problems.

Keep your eyes on your own plate – do not worry about what other people are doing.

YOU CAN ONLY CHANGE YOURSELF. Its annoying but true I’m pretty sure of it.

Never see pain and look the other way. Move towards it and touch it in whatever way you can.

Be generous always. Extend yourself to others. Show people that you care.

Actions speak louder than words. Empty barrels make a lot of noise

Food is a wonderful nourishing gift when someone is suffering

Come from love not fear

Life is a magical gift. I have no idea why it happens but it does

Look after each other always

You are the coolest funniest loveliest boys I have ever known. I love you and I’m with you all the way.

The arrogance of ignorance

I haven’t wanted to write in this blog for quite a while now.

I have been on a bit of a journey both mentally and spiritually since my son Canon was diagnosed with autism a few years ago. I have been seeing my own psychosynthesis therapist for over 10 years  who helps me so much and is my weekly place where I am met properly and can feel that glorious connection to everyone and to our life. But I have no real contacts in the autism world with regards to a more spiritual connection or in relation to my own process of it – more of a how to help our kids angle.

I have found it so overwhelming, the myriad of different angles and opinions one encounters both online and off it about the how, whats and whys of autism. I am now feeling quite disappointed at the world in general I think and as someone who was already a bit suspicious at how the world is run and managed I have really crossed a line that I cant quite come back from. It has led to some quite magical experiences on one hand – seeing things so differently – but has also mostly left me quite tired and depleted too. Viv my wonderful therapist describes me as entertaining a real dark energy, the shadow world. I watch lots of “conspiracy” videos and feel instinctively that there is a real darkness in power in our world. The autism experience and disappointing recent world events have kind of heightened this sense in me and awakened me to some dark energy.

Alongside this I also very much hold that it may well be my fault – not in a victim way I would hope but in a genuine I wish things had been different way. This unsurprisingly is depressing but is not something I feel very willing to let go of as it might be the truth. I really don’t know what has happened to Canon and why or what will happen and there are times when that seems to be ok and times that I feel on shaky ground. I don’t accept any current framework yet. The more I read and research autism the less I know and feel sure of – a kind of arrogance of ignorance scenario, now I’m not so ignorant to what it is I feel very unsure and less opinionated. We do ABA with Canon which is very divisive in the community it seems but I feel it has given Canon and us the gift of communication again so I stay with it but is it my ideal? Probably not? I did not vaccinate my third child – again very divisive – I felt there was no choice.

As I am writing I’m desperately trying to think why autism would bring all this shadow stuff up or a darkness and is it just me who feels that? Its quite subtle. It seems that this unique condition has so many different mind boggling angles from treatments, causes to cures. Then of course there is how it presents – so individual and unique – but in general as a possible block to love – which typing that I welled up – without love and connection I struggle to see a life worth living? Or a life of happiness?

Not that my life is the bloody sound of music. I know I can choose today to try and come from love not fear but whats the point when I look up and out at the world that behaves so badly. It feels like a cop out somehow. Eyes on me own plate and dont think about the darkness.Dont think about the problems of others.

Isnt that the whole problem that we are all too busy to notice or really care to stop things done in our name but in no gain to us? And certainly to cause pain to others? To stop our leaders acting like bullies in the playground? An eye for an eye? We wouldn’t accept it in the playground but we do on the world stage.. just crazy.

The arrogance of ignorance – I like this saying but I’m afraid I cant seem credit it. It seems very apt. I am educating myself out of both ignorance and arrogance as much as humanly possible.

This is not a life

“This is not a life” my partner is forever holding his hands in the air and remonstrating the world, although it feels like he is talking to me. I usually roll my eyes with disgust. So dramatic, annoying, selfish and self pitying. Yuck. Not my cup of tea.

Except… I felt like this several times over the last few days.

Halloween was planned and sorted. Outfits bought, pumpkins carved, sweets stocked up. I packed all the kids up and had a little mission to do before we picked up the eldest play date to go bowling. I need to return a monkey to our speech therapist that Canon had liberated the night before. Ok so far so normal, my first used to liberate items regularly when he was 4 (I took it very seriously then). I needed to go to the bank and grab a coffee. What was I thinking? The meltdown started in Starbucks, carried on down the road and crescendoed outside WHSmith where I had to wrestle him several times to grab back the chocolate Gruffalo. I coped ok at first but as we did the long walk down a busy high street with the whole street staring at us ( he is loud) I started to feel really angry. This melt down was about chocolate. I had bought him a kinder egg to start what a mistake. He wanted more, grabbing at it in Starbucks and just screaming from beginning to end. No I will not just keep buying him chocolate to shut him up for an easy life. No that is not how I raised Raf and will not be how I raise any of them. ARgh.

I always have this horrible feeling after his meltdown. Guilt, anger, regret, sadness. I often have a cry when I manage to get away from everyone’s accusing cold and judgemental stares. I did in the car. Canon still screaming, baby Sol screaming now freaked out and my eldest confused and upset but trying to act cool. It always feels like my fault. Shoulda woulda coulda.

Anyway so far so not great. I arrive to pick up Rafs mate properly red eyed to take them ALL bowling. Oh yay. Can’t wait.

Bowling was not too bad though with juggling the baby and trying to encourage, strike that, make Canon take his bowling turns. I think he must not hate it as he does partake mostly willingly and there is not much he will partake in at all so… Anyway it doesn’t go to bad. I even have a game of air hockey with Can in the arcade. A proper first. Whoo hoo. I ignore all screaming for chocolate and stupid vending machine toys ( whoever invented this shit can we make suffer please?) We go home I make pizza. Canon has ABA, the baby has a sleep and Raf is happy messing about with his friend. I make pumpkin soup too. Keeping the dream alive. Doing great. Get everyone dressed. I am a witch, fitting for my day. We are going to our friends house to go as a group. I forget to take photos. : ( It’s all too crazy.

i should have just lit our candles and taken the kids around our neighbourhood. It was all a bit of nightmare really. I couldn’t really keep up with them all with the baby in his pram and 4yr old Canon in his superman suit. Refused everything else completely except that, but he looked fab. He hardly got to do any trick or treating as we got so far behind. I should have stopped and taken a bit of control back bless him, he was happy chomping through some of the sweets he had oobviously liberated (hmmm again) from their house before we set out.. After an hour and half we finally got to Jonathan Ross’s house (he always goes all out at Halloween which is lovely) which was crazy busy so Canon hated it. And then we traipsed to someone else’s house at super speed. I knew we were in trouble again. I can feel the hard times coming now, there were tons of people, dogs, doors ringing. The baby is not asleep and crying. Canon is starting to get agitated and Raf is hyper. They are offering me a glass of wine, I laugh. Errr no love. I am up anxiety alley, my kid is about to rip down all your decor and has just handed your dog a toffee apple, sorry, the baby is climbing up the stairs. Argh I need to go. its 8pm. We are about 2 miles from my car. To top it off the kid whose house we are in has practically just pushed Canon down the stairs and there is an energy to him I am not feeling. Turns out he had taken our kids sweets, dunked one in the shower. I say to my lovely friend I have to go, no no stay she is insisting, we will all go together soon. I tell her firmly I need to go. All three kids are not ok so they decide to all leave, I feel a bit bad but so glad to be out in the fresh air heading home. Canon bless him is up the wall, running, shouting, hitting and completely unaware of roads. Someone pushes the pram, someone holds the baby who is still crying whilst I chase Canon. I feel like crying again. I am knackered.

Finally home. It takes a while to get them settled. I have a bit of a go Raf, which was a bit mean, about defending Canon. The older boys were not nice to him and he didn’t defend him. Whilst I accept Raf is not going to wait and include him, I don’t accept that he doesn’t stick up for him. He cries which confuses me as I didn’t see it coming, excellent work love.

I went to work on Saturday until 2 then watched Spider-Man with the kids, sort of whilst baby chasing and cooking etc. I decide we should all go out to watch the fireworks at Ally Pally, well on a nearby hill as we don’t have tickets. As we are waiting Canon trips on something, bangs his head on a rock and there is blood. I am no good with blood. Mike tells me it’s ok but I take him to hospital where he gets glued up ( I had no idea they used glue now!.? Anyway thank god as the nurse told me he would have had to be out for them to stitch him up as he was very agitated in the hospital). I get into bed and I think to myself this is not a life as the baby cries waking up. He’s teething.

i do it all again today, this is my life. I am lucky in so many ways but I am knackered. I need to take a month off and regroup, make better choices. Yeah right.

As long as he is happy…

Well as long as he is happy… This is said to me often about my 4yr old son Canon who has autism. It grates on me. It misses just so much, boxes up our experience with a bow and gives it back to me tidy, nowhere to go. Conversation finished. Superiority established. Wow.

I think i probably would have said it before I had experience parenting my son. Bare with me with this because I’m working this through. Someone i really love and respect said it to me this week and because I was safe I became impassioned. No I cried, that is not enough. It’s not enough for our children to sit vibrating in the corner, spin round the room, grind their teeth staring at nothing humping the floor all day (yes my son can do all 3) everyday because this is our son and we want more. He is happy as Larry checked out and oblivious to us. You wouldn’t say as long as he’s happy if he were on a class A or if he had another physical disability. There is something I feel about the word autism that invites dismissal and patronising behaviour. To the autistic and the parent. It’s interesting. Maybe we think its the parents fault, it might be and we’ve read articles to the myriad of reasons as to why it might be. To the autistic we presume complete incompetence or savant. Its confusing. AND. My experience is all the in between.

I get that the most important thing, the best thing in life is being happy. Maybe he will be happy or maybe he won’t. Somehow though what I hear when you say that is no hope. He is beyond the normal ups and downs, so disabled that he is going to smile through life and not feel the journey like me, the agonies and of course the ecstasies.

As long as he’s happy.. This is what I actually hear:

Why are you speaking? Lets stop. I’m not interested.
Back to the important things…
God forbid you tell me it’s hard you selfish woman.
It doesn’t matter what he does.
It doesn’t matter what he learns.
Let him sit in the corner rocking all day.
I don’t see your struggle to work out this unplanned journey at all and frankly I don’t care.
I don’t see you’re effort to understand and help your child because its so simple.
I don’t see the epic journey you have made from victim, through fighter into loving acceptance and trying to presume complete competence for a child no one else really cares about or thinks capable of much.
I don’t see the epic journey your child is making trying to adapt to the world they don’t understand day after day after day.

What i really hear is that you don’t care to know more.

Exploring the magical…

“Yes you can have it all but it will be messy” Nora Ephron.

I love that quote. Hallelujah ain’t that the truth. My truth. Or possibly more apt for me right now is you can try and have it all and it will be messy. My children, whose needs come before my own (what a relief), making a living doing what you love – that’s a blessing slowly coming to fruition, the heart in the home (daily work in progress) and a relationship 10 years old yesterday that’s sadly passed unmarked, uncelebrated because its not a priority and you are both tired. Awww. A fantasised life that’s not your reality explored, agonised and shelved again today. Dreams of a magical existence dragged down to the un magical feeling present.

Is wanting to feel the magic of the world as much as humanly possible completely unrealistic or really sensible? Does what go up always have to come down? It sounds a sensible option to me but it isn’t very realistic and completely incompatible with the daily grind, the drudge of life. I find it enough to just remember to will it – the magic I mean.

Remembering to be vulnerable, be truthful, be generous and most of all see it in those that have lost sight of it will keep it alive in my heart. To keep looking for it passionately. To see the magic of our existence and experience as a beacon of hope in front of me at all times or as much as possible.

I will remember that tonight and be grateful for all the magical things that have happened in my life. I will be grateful that I can entertain having it all. I remember those that can’t feel magic and wonder tonight. Me included but it’s always there I know that so God give me the will to feel it.

What is freedom?

There are things you should do and things you shouldn’t. It depends where you are from what these are probably but some are possibly universal. Instinct should never be ignored, how many glorious things are lost because we are trained away from even knowing let alone following our instinct. The fear is us being feral. Who wants feral children or adults? Like animals? Better than zombies so me probably. It’s a fine line – tricky to navigate. When does one push through and extend out of saying what you are meant to say, what’s safe, tried and tested. Everyone has got so good, so right on, it’s lovely but argh say what you feel, be who you are. So boring. Maybe it’s just in my little life right now this feels really relevant.

My kids don’t really roam free. Where to? we live right in the middle of London. They don’t even want to go out alone. I did when I was 8. I did all sorts of crazy stuff but I had a rebellious older brother which probably helped. I’m going to make my eldest walk to the shops on his own. Tomorrow. This is ridiculous. They don’t knock about, run wild and free without an adult nearby. So sad. So safe.

I don’t worry. They are safe ferried around by me. So instead I worry about money, mortgages, careers, love, blah blah and none of us are free.

Our lives aren’t getting free-er (is that a word?) they are getting more fearful and lonely in every which way you look at it. I’m on duty in this house, I am duty bound to make my kids roam free. I am also challenging myself to speak the truth, my truth, my feelings and sense. It’s epic. For me anyway. Trusting my instinct and going for it. Taking the risk.

One life and all that.

Tomorrow I am going to say to my eldest son – speak from the heart and speak your truth. Never feel afraid it’s all you have and if you don’t value it no one else will. Eleven if you get in trouble at school. Gasp.

I want to feel freer, lighter and abundant. I want it for my kids. It’s a work in progress, it will involve life changes. Good. Start tomorrow.

Sing it loud

I watched my little boy, with his fellow class of 8 year olds sing this song in the local church and it made me well up…
It was a bit like this but better because it was my son singing with all his little heart:

Finding perfection

Love this post on love…

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