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Tag: Parenting

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.

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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.