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Tag: autism aba

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.

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Autism

My wonderful cousin Jane sent me ths article this evening and it really inspiref me and made me laugh and cry with recognition, hope and despair and grief.

http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?module=Search&mabReward=relbias%3Aw%2C%7B%222%22%3A%22RI%3A13%22%7D&_r=1

Wow what a day can I just say. I haven’t seen the boys much as I was out all day after dropping them at school and when I came back they were all asleep which thank goodness is a rarity for me as I feel slightly disconnected especially after reading an article like this.

It has bought up so much stuff for me. I am still somewhat taken a back at people’s assured grasp on autism. Some comments really do defy belief. After reading lord knows how much on the subject I know I don’t bloody know. I know I am doing well with it now, Mike is doing well (well I know he still says Canon is cursed but apart from that …) and Canon is doing really well. I know this I am in a better place but I also know what the journey to here for us has been. I think it possibly might be unexplainable on one level as it sounds quite dramatic and a bit hmmmm highly strung which I do accept to be an outside perception, I know I have thought that sort of thing about parents too. Genuinely. But my experience of absolute fear, panic and devastation at seeing my gorgeous son completely disengage with us and life has led me down a different path of life..

To a different dimension. Comparible but more profound than my three natural child births (pain that makes you see life a bit differently, a bit more vulnerably) and my mums look of complete terror when she was taken into a private room at the hospice knowing she would die there (which she did a few days later) All of theses experiences were totally beyond me, out of my control and pretty hard to bare.

My sons autism was regressive so the most terrifying element I think is the fear of this unknown destination. When you realise your child is no longer saying any of the words he once said freely or happily, his eyes firmly fixed on some point firmly about at least half a meter from your own and behaviours undeniably strange – running in circles humming, stuffing the bed sheets in his mouth and squirming on the floor for hours if left to his own devices, screaming the house down, panic stricken cries if you left his sight for a second, all night humming blah blah etc.

Anyway it might not sound like much to some people but WTF. Literally what the fuck is goi g on, has happened, what should we do and where is this going? I’m pretty hardy and it flummoxed me for quite some time.

If someone tells you their child is autistic you don’t need to fix it by telling them what you (just really don’t) know. I can take it actually but I’d rather I didn’t have to. It’s not an easy journey as many aren’t but in our little world this has been one epic unexplained and unresolved experience that has weathered our souls and wearied our bodies. Please try to extend wherever you can to us parents who are hell bent on helping these wonderful, gorgeous, challenging, bright and extraordinary children reach their potential. Be gentle on our varied beliefs on the wtfs- why,what,how,when’s and our stage of grief. We need you to see us, hear our cries but most of all meet our little ones – they are all our children after all.

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.

EEG please

After seeing this a few months ago I am on a mission to get us an EEG.

http://www.ted.com/talks/aditi_shankardass_a_second_opinion_on_learning_disorders

She is my new favourite person. She answered her email. Well I did email the same email every day for three weeks and it was a generic response but still..

It’s true. They diagnosed a life long neurological condition based on an hour behavioural assessment? No EEG for autism.

No nothing for that.

Oh and while I am on the subject might as well have a rant about these same people that diagnose from behaviours then turn their nose up at behaviour based interventions. (ABA). Weird.