unitedinsite

Month: September, 2014

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.

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FEAR

Now I’m not a big fan of shame. Shame shuts us down and disconnects us. It strangles the loving living breathing energy out of beautiful things. So saying that I am still tempted to call this post “we should be ashamed” I haven’t yet but I probably will because I feel disappointed that on a global scale we act in such a way that I am ashamed of us. Maybe it is disappointed. Maybe I can do with away with shame it won’t bloody help. Let me explain.

I have been listening to LBC a lot recently. I know I know it’s such a BAAaaAad habit because it is designed to escalate, as my wonderful wise psychosynthesis therapist Viv explained today. It bloody escalates me at times, shouting at the radio lol. In general though I have it on when I am designing jewellery for clients, I do this by hand quite painstakingly measured using graph paper and tracing paper and I find it good to have some noise in the background, enter LBC. Most of the time I can laugh, it is funny how opinionated we all are, me included. We are a funny bunch. But there is something painful for me, I have to laugh or otherwise I may well cry. Really.

What the bloody hell am I on. Well I would hope to be on the side of love and good living. These new narratives about Russia and it’s mad, dangerous gangster el presidentay. Yes that nutter who annexes innocent countries we must stop him before he is unstoppable. What do I hear? Fear mongering. Isis oooo people are getting whipped up into a frenzy by monsters hacking heads off, masked animals. This rhetoric just doesn’t feel right to me. Why are we being whipped up again? Call me a paranoid conspirisist if you must but I just see and hear another way for some folk to go ahead and also carry out acts that none us sane and happy and loved up would allow on our watch.

I don’t know who Isis are but I sure as hell don’t buy this strange one sided story we are being force fed. Ok ok I could obviously turn off the radio but I can’t I am transfixed. Again. Again we are called to arms by dubious wierd and slightly mad stories. Weapons of mass destruction hoho we all know that one, don’t get me started. I am started. And i am still way back ten steps behind waving my hands in the air, looking around. who is with me? I am here thinking who the hell are we to say who can and can’t have these bloody weapons? How bloody dare we declare that certain countries can and certain countries can’t! So bloody what if he does? if you put Tony, Sadam and George in a room i am not sure who would appear the most nuts. In bloody furiating. The devastating arrogance. Point your finger and point three back at yourself – never a truer word spoken. Where is the basic self awareness? What the hell are we thinking? Until we stop, really take responsibility for some stupid horrifying choices we have made towards others in the world there will be hatred. Distrust and disgust, I don’t bloody blame them. I would be fucking scared too if I lived in these countries. War on terror! i know who I was more bloody terrified of, pah the whole bloody lot of us were complicit in this one. We are not doing enough to stop these oiled greasy ugly and terrifying machines of words infect us. Not in my name. What a great name for the campaign. Right back in the beginning not in my name. Right back to the know it all arrogance of Europe and the US, the United Nations of arrogance.

Do not get me wrong this nutcase hacking people’s heads off is literally unbearable. Why is he doing it? What does he want and why does he want it? Do I trust the story that this crazy frenzied Islamic army just whirlwinded in from nowhere to threaten us specifically and rampage through the Middle East? That British Muslims, women and children living amongst us are leaving in droves to hack the infidels up? They are monsters, animals, sheer terror to wage war on. They will return blood thirsty. FEAR. I don’t believe in making fear based decisions. There will be no love involved and more generations of us will live the consequences… Fear breeds fear. Let us not respond to this nasty guy beheading people, he is high off the fame andpower we have given him.

Let us not let him, this incomprehensible figure set the global agenda.

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.

Guuuuuud

I’m happy. Been busy making house a home. New lights, brilliant amazing revolutionary dimmers fitted (must be light sensorist) and gardening. Really feel like the house is getting back its soul and feeling loved and warm hearted. There are many things wrong in the world but working hard to make sure something feels good is really worth it. I’m feeling it now. Lots of people in my family especially my brother have helped and planted me a beautiful flower bed : ) I will post a photo.

I have a workshop tomorrow at the school and at home. So happy with how little Canon has been getting on at his first few days in reception. What a complete cutey. Jane from Barnet Beam came today. She is awesome. I feel really supported by her and can be really honest. She told me how it is for some of her families today. I won’t repeat as it was said in an genuine, honest and trusting way but it really made me think how lucky we are. In so many many ways. Firstly that although Canon has meltdowns and they feel awful when they happen, especially in front of unforgiving and judgemental strangers, it is nothing compared to how some people have to cope with some of the extreme symptoms of autism, the violence, the agitation all day every day. There are really saints living amongst us, probably without a dime, a life or a minute for themselves. One day I hope I can help do something more to help. Them and their children. What I don’t yet know but I trust something will become clear.
What I can do now is get bloody grateful. Life can always get way worse and the are horrifying things happening all around me.
Secondly I am so glad I have opened up to reading so many paths and experiences of people living with autism, either themselves or in the family. What an awakening. It’s not black and white quelle surprise. It really needs a lot of conscious thought and self examination. There is not one story to cling to but many many many paths and routes to embrace. I feel more relaxed and empowered to find our way, our truth to a story that I will tell as it has helped me considerably to hear other people’s journey. I will endeavour to not be authorative, fearful and close minded.
I am grateful to have been introduced to ABA at a young age for Canon. I feel it has empowered me to live normally. To treat Canon more normally and to bloody toughen up. I know some dont like it or agree with it but I see nothing but improvements and good things for Canon. He is happily doing things now I was praying he might this time last year. Now when I ask him if he is ok and he is he holds up his little thumb and says guuuuuud. I love him. If he isn’t he says nooooo. I think he is happier, more at ease generally. Today he ran away laughing with four petit filous he had liberated from the fridge as I chased him around the garden. He is happy. We are happier. It’s been a hard painful slog for quite some time. Long may it last.