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Tag: aba

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 Рmore 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.

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.

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.

Nouse

Nicky Nouse. We were saying goodnight to all Canons animals tonight and I am not having it tonight. He refuses to say Mouse. Or Micky Mouse. So I say Mmmmmmmmmmmouse. Nouse. Ok Mummy. Mummy. Mmmmmm. Mmmmmm. Mouse. Nouse. Grrrr. After 10 mins I’m irked. What’s the problem? Is he doing this sort of on purpose? He used to say mouse I’m sure. He can say mmm. Quelle problem? I’m confused – my natural state of affairs – but trying to be instinctive. My instinct says that he might be doing this on purpose. So I say ok Micky is leaving, he gets anxious I’m splitting him off from the rest of the entourage. He says Micky I smile and say mouse and he says nouse. Hmmmm. Rafi pipes up from the top bunk poooooor Canon. Just to add to my inner turmoil lol. So I say that’s it Canon Micky Mouse is off. Canon crys, rafi pleads and then magic… Mouse. Long and drawn out. Determined not to hear the dreaded nouse again and ruin the achievement. I high five Canon. Yay. Tuck him and Mick in bed and run. Now lying in the bath finally sort of relaxing and typing me blog. iPad flashes 5% battery. Course. Kids. So that’s all folks : )….

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.