unitedinsite

Tag: decisions

Is it just me…

I have noticed a few things recently..

The media keeps referring to things but not actually really communicating – to me the layman – what is actually going on…
Isis, Israel, Rotherham, Ebola, Ukraine.
I keep hearing or seeing reports around the crisis in IRaq, the scandal of Rotherham but I don’t feel them connecting with me -why not? Is it just me? Is it possibly the ego of the media wanting to be ahead of the curve so it’s already become a thing- the Rotherham scandal – it’s already being analysed and placed in a context but I am not up to speed and having a hard time finding basic articles that will just tell me what is happening? Or happened. Yes you are very clever, probably way cleverer than me but I dont think I’m stupid so can you just report things properly please so I can understand them? I would like information not always opinions!

Also while I’m on the rant I can feel a real shift in my world, in myself and I see it in others. Intolerance. Intolerance of others, their differences and challenges. Was it always like this? Israelis are greedy, Hezbollah are crazy, Isis are lunatics, Russia has gone mad and China is coming whooohahaha… Everyone is out to get us and we’re f’d so better bomb the nuttiest. The Isis furore is unbelievable. We don’t trust anyone anywhere now.

Syria was fine to mass murder with chemicals but not with knives, that’s it we’re going in. They have those weapons of mass destruction, yes those ones we have, oh and our allies, who have actually used them but we dont like HIM so he cant have them. Oh yes we are a bit f’d but not for the above reasons but because we just can’t play nice even though we learned to at school. Well we did in North London : )

Also political correctness is not cool anymore. Thank God. I have never really approved, its boring, mind numbingly dull, be nice, dont speak you might offend someone. god forbid! they might never get over it. But all we have done is just supress what people think and feel, how can they and us move forward?

AND. Nope I will not state my religion or ethnicity on your form it is not relevant. No I don’t need an interpreter (except when I read or listen to the news ; ) but I can’t find anyone who can work out what is going on either). No black history month is not cool and keeps victims victims. Inclusive history please where we get a good grasp that in every race there has been slavery and exploitation, that we have all behaved unbelievably badly in the past it is not race specific. Lets not keep burdening our children please they don’t need to carry the burden of ancestors long gone.

But let’s teach that there is hope, most of us do not want to treat others unkindly, we are evolving. It is difficult, we are a tricky, prickly, intolerant bunch us humans. God bless us.

What a difference a day makes…

I was full of joy two days ago, happy as a lark. Next day my little bubble burst a bit, the wind definitely out of my sails. I was told that Canon has got a learning difficulty alongside his autism. Whoa what? You mean my little one who is not freaking out at school, saying Canon when you ask his name and saying guuuuuud thumbs up when you ask him how he is. No. Can’t bear it.

The thing is I can see it, I don’t know the difference between autism and learning difficulties but I can see that he is just not really picking up stuff like we thought he might. Colours, names, objects. How any times have we tried to teach him colours? Yesterday as standard… Look Canon yellow car, red car, yellow car, red car (pointing them out) now asking him to copy.. Red car… Red car. Yellow car… Yellow car. Where is the yellow car? He points to the red. He just doesn’t get it bless him. He needs a lot of presentations, “normal” kids need say 5 times to be shown the picture and the name to get it (I am told) autistic children need lots more (I am told) Canon possibly needs hundreds if not thousands. He sort of scrolls through words at any expectation from us or his tutors, an aggravating task he just seems to suck up now just to get the object he desires in that moment, oblivious it seems to why he should need to communicate.

Now I will question everything, think and rethink what and how we are doing everything. Will he be able to stay in school and learn? How will he learn what does he need and what is going to help? More questions no answers.

Oh well nothing has actually changed today except another word or words have entered our life. Our child is just being who he is being. I have had a couple of cries. Life will go on, we will just have to work a bit harder to change the bleaker picture that seems determined to get painted of our magical little boy.

Bloody light

The thing about anything is you can always up your game. Aba is a game changer I think for autism. It might not be everyone’s cuppa but its definitely mine. I get that it might seem inhuman to someone who has not experienced a child slipping away from them to somehow well coax a child like that. My cousin Jane, one of my autism mum heros, always talks about the “ah bless” mentality. Yes that mentality of let them just sit there flapping or running in circles or jumping up and down – it’s making them happy. Well it does not bloody make me happy to see my bright loving wonderful little human troubled. Yes preoccupied, not coping, troubled. See I don’t accept it. Nor should I. Just because we call it autism it’s acceptable. Well it’s not. Perhaps it’s because our son was basically not verbal and still is literally a man of very few words. Perhaps it’s because my son is a big strapping lad who one day would physically be to big for me to handle. Perhaps i dont want to see him walking about with two big male carers when he is 18 because he still totally freaks out when he doesnt get what he wants. Perhaps it’s because I believe something has affected him and that he wasn’t born with it. Perhaps it’s because I believe that helping him understand this world means that he will have more choices later, that he will be able to write a blog (lol) or tell people how he feels. It is vital to me that I don’t leave my son non verbal or unable to communicate. Aba gives me that hope.

But even that journey is a long complicated winding road. My new nectar from the gods Laila (new VB consultant) was that good but we did get a kick up the arse and it hurt. He is so delayed. Mike is still sold on him being cursed. Laila was understanding. Good cos not sure we really know one day from the next right now. But I had lost sight and my eyes were opened today, why had I lost sight of what is possible for Canon? Why was I thinking it was going to be ok for him to be in school every day next year with a TA and just be happy he was there locked in his own world not causing too much trouble.. why the hell would I not fight his corner? It’s bloody not ok he needs more! He is going to need a lot more. We are not going to just survive this Canon is going to thrive. No matter the cost, trust it will come, no matter the work, we can sort it. So today’s light was a bit less like yesterday’s prettier awakening sunrise and more like an overhead striplight tearing you from a nice deep sleep at 4am. Get up get off your arse there is NOTHING more important than helping your son.

Disconcerting days

It has been a disconcerting day and I realise these have become my norm more than the rarity I think I wish they were.
What has me so troubled? Decisions? These come thick and fast and I know they are my downfall. In that I bloody hate making them. WHAT IF…

When I drop the kids off at school Ling comes over, another mum but she knows Canon has autism as she volunteered at his preschool (this will be another post as I really don’t know what I am doing telling / not telling!?!) and starts talking to him very slowly. He ignores her completely and then just looks at her like hes embarassed for her. She probably means well but I wish she would stop as people are clocking her pretty out of character behaviour. I feel ok then I dont feel ok then I feel ok and try to decide to leave it there at ok. It does not matter if people know. It doesn’t. Except it does for lots of reasons.

It matters cos I probably havent quite fully accepted it myself in truth. I still think we can get him pretty normal – you gotta laugh as that just sounds so awful. I mean we can get him back? It matters cos I think maybe its something I did or didnt do right that has affected my baby : ( it matters cos I want him to fit in to this particularly sensible North London academic middle class school. (I know. We really dont fit in anyway even tho sometimes I admit I try ; ))

So after trying to leave it at ok we went to see a nursery up the road for the baby. As soon as we start talking to the jolly old Greek owneress I find myself rambling on about our middle son with autism and are they aware of it with thorough checks for any signs blah blah blah. Mike is holding Sol and I can feel him wanting to headbutt me but I cant stop. I know I have high anxiety about our baby. I know its probably natural and I allow myself to entertain it and share it but I am full of psychobabble law of attraction shite too. What an internal pickle.

Mike is however straight to the point furious he tells me in his thick Lebanese accent I am a f***ing jinx. In his world its quite simple I have super powers to jinx everyone. Dont get him started on his friend Eugene who basically commits fraud and I told him he would get arrested, when this inevitable outcome occurred it was you guessed it my fault the jinxer. Not Eugene the law breaking (but actually really lovely) fraudster. Anyway the nursery was lovely and would you believe it this never happens cheaper so far so good. Oh and the really sweet old owneress told me that my son who is 9 months was fine no autism there. Bless her. 10 out of 10 for effort.

We argued all the way home. I know he just needs someone to blame should the unthinkable occur. If he reads this he might actually self combust (more jinxing). To my defence…. The same week we must have conceived Sol was the first meeting where someone mentioned the autism word. It was me the jinxer incredulously telling the doctor asking us if Canon watched the washing machine spin around (he didnt) that my son did not have autism! To which he replied he would not rule it out. My world crumpled a bit. Cut to the week before I gave birth (10 long months not 9) when he was diagnosed with autism. What a journey of heart breaking denial. I finally cried for that whole week then I gave birth. The next day the jolly midwife comes around and cheerfully tells me both her sons have autism. Arghhh.Please go away. AND suddenly its everywhere – sibling autism. GO AWAY. Dont come back near the jinxer.

Ok back to today, the nursery is a done deal. Great so that wasn’t the indecision bit of the day just slightly eventful in my little world. The decisons are what school to send Canon to, whether to move my older one Rafael the confident pretty cool kid out of a school he is actually quite happy in. Loves his teacher and speaking a bit posher than he did when he started. The noise the lists the pros the cons drrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr my head is filling up. The school special needs coordinator rings me to see if I’ve decided and if I have heard anything from my wayward statement making borough (We attend an out of borough school now that we have moved – part of the reason to move school). Um. No.

I have to cut in Mike has just asked me if I am writing my blob. Yes my blob. That is probably about right.

The school is not the only decision. I have to find a new ABA supervisor as my tutors are threatening mutiny and lets face it I dont really have a clue what we need. I phone Laila – a supervisor that one of the therapists recommends and she is awesome. I want her to fight in my corner. Like a properly energetic organised and efficient positive sounding person. Just exactly the opposite to how I feel. She actually starts to feel like nectar from the Gods as I soak up her get off your arse vibe. Yes maybe I have been missing this in my life. Shes expensive but as she feels like nectar the gods are pouring down the phone line, or through the wifi weird waves that mean we can speak I manage to get her to come see us Thursday. Result. No pressure Laila. But now I’m panicking how to stop my existing programme supervisor a tad prematurely considering I have not even met her but as you can see I’m pretty sold. Indecision. Sigh I should have done this months and months ago. WHAT IF..

I really need to find the off button.

Mike has cooked Basella so I am free to fill in forms, lots of bloody forms for the kids. Then Sol is up fuming, another little tooth is coming and a sore bum. Bless him. We just sit on the sofa he wont have anything else. I cuddle him. After 5 minutes its like forced meditation as I run through my minds contents of stress and anxiety about all the things we have to do, most we cant as we dont have any money left but I like to keep them up front and cosy with all the other worries, problems at work, things I’ve forgotten to do, things I need to do,things I would like to do and things I dont do well. As soon as he seems happier I put him next to the toy basket and scribble off 5 lists. I cant help it.

A friend reminded me a mantra I know well.. when you dont know what to do dont do anything. oh yeah good one : )

My dad comes over. He’s here to watch the footy. We watch Argentina get lucky. The kids run riot. I try to stop Canon running in circles at the end of the garden, i kick the ball to him he says NO then runs off. I do what I always end up doing chasing and tickling him. I dont like him running circles. Bedtime. My dad reads Canon a story. Canon ignores him but he doesnt take it personally. He asks Canon lots of questions that are way beyond Canon as he always does. How are you? What have you been up to? Cant decide if I like this. Its hopeful but its painful.

Staff meeting

I own a beauty salon and today we had a staff meeting. Waffled a lot about maintaining good energy in everything we do, they looked back at me and I wondered if they thought it was cool or whether I would shut up and talk commission. I wish people would be prepared to pay more for a mani or some waxing – breaks my heart not to pay the girls what they deserve. Maybe i just havent got it right. Will find a way, the whole business feels energy zapped and zapping. I know every business feels like this sometimes but it has been a lot of the time recently. Can’t really get it straight in my head, probably something to do with the baby and little Canon probably. And the move. Cream crackered. But need to keep on so big decisions need to be made. Signs gratefully received world.

Going to watch the last episode of my latest marathon The Americans. It’s awesome but I will feel bereft after. Can they please make tv quicker I hate long season breaks.