"...To You Out There in Normal Land"

Spasticus Autisticus is a song of genius, another doff of the cap to Mr Dury.  It was last aired at the opening ceremony of the Paralympics which was just perfect. Mr Dury was asked to pen a song in 1981 for the International Year of The Disabled Person.  He found the whole concept to be patronizing so he wrote a protest song instead:

https://www.youtube.com/watch?v=UKnBgJG9A8E 

Here is a great interview where the man himself explains his reasons for and the reactions to his song.

https://www.youtube.com/watch?v=LSo9OErEmM4

For the last 2 or 3 years now I've sat on our local Autism Partnership Board as a parent carer and always been dismayed at the lack of people with Autism around the table. The Board is chaired by a Councellor and we recently had a new Chair appointed.  Still dismayed by the lack of input from people with Autism and the general apathy of organisations who attend it to organise any working groups or consultations with autistic individuals, I decided to organise one myself.  The new Chair was very encouraging and enthusiastic about meeting them.  I got together a group of young adults with autism, many of whom I'd known since they were kids as well as some of my young mans band members.  I just wanted the new Chair to hear their experiences, their reality, from them.  I've been trying to be their voice at the board but thats not right.  One young man in the meeting said "for years I used to sit in meetings at school about me and my Mum would tell them what I needed, fight for me and explain the difficulties that I had. Don't get me wrong I'm really grateful that she did but to this day I struggle to speak for myself because I haven't had any experience of it"  Guilty as charged.  Yep, I've done that, over and over.  

This time last year we were in and out of A & E.  I carried a growing plastic pocket containing his notes and his Autism Passport.  Autism Passports are a way of communicating a persons condition and their needs without awkward and repeated verbal explanations. My son hates them, he thinks people should "just know because Autism is not rocket science" but still I have to shove it under their noses.  The majority of staff take the time to read and understand, some just don't have the time and some just don't think they need to.  A nurse and fellow parent brilliantly suggested that a symbol should appear on the individuals computer records which would alert staff.  Not rocket science.  There's alot of talk about awareness training and indeed that's part of the Autism Strategy set out by the government under the Autism Act 2009. There's alot of talk.  But, as with education, why isn't it a chunk of practitioners training and generally integrated into all that they do??  To insist that practitioners take time out of their immense work loads and attend an hour long awareness training session, may help but it needs to go much, much further and its not mandatory unlike the rest of their medical training.  Not important enough.

In the general media at the moment there is an awful lot of talk about equality. I've heard so many people talking about the rights of individuals and they quite rightly mention LGBTQ, race, gender and religion BUT NOT DISABILITY. I've shouted at the telly quite alot this week. The word retard is used in films, fucktard being very popular at the moment, and seems to be absolutely fine. But its not and so is a whole host of language that is being ignored.  Disability hate speech, hate crime and discrimination needs to be head line news.  Yesterday I got a letter from the DWP stating that they stopped my sons ESA payments over a week ago. He gets income related ESA, but they have said he hasn't paid enough national insurance so they're stopping it. I'm not quite sure how he is supposed to have been paying NI when he hasn't been working, the tribunal was less than a year ago. What kind of fuckery is this?  And Esther McVey said this week that it was ok that families would be 2000 pounds a year worse off as difficult decisions had to be made.  These are not difficult decisions these are cruel. 

Groups like Autistic UK who are run by Autistic people for Autistic people are growing and teaching "normal land" about ableism.  I'm learning a lot and its changing my perceptions and making me question my own views and behaviours.

I'm not quite sure where I'm going to go with this blog, my young man is finding his voice in Punk music, his fellow band mate wrote the lyric "Pay day is today, fuck all came my way"  A local peer to peer support group are now represented on the Autism Partnership Board. My voice needs to be quieter because "You can read my body but you'll never read my books" - I need to start reading.

"There ain't half been some.....

"Clever bastards"
"Probably got help from their Mum"
"(who got help from her Mum)"

https://www.youtube.com/watch?v=PPvRsLWlDXw 

First nod to the genius of Mr Dury

Just as things were beginning to settle down with my sons health condition we had our first appointment with his new haematologist. All went well. The second appointment took me by surprise.  "We think this was a transient illness, we need to increase the days between injections, gradually decreasing the number he has, and hopefully stop them altogether" Over my dead body.  She could see the shock and terror on my face and so could my young man.  Then she said "If you can't cope with this we'll have to get someone else to do it"  Don't push me.   I didn't rise to my anger, instead I asked what had happened to the neutrophil killing anti bodies and how could the diagnosis suddenly change from Autoimmune Neutropenia to "a transient illness".  She sat and explained that there were no longer detectable antibodies in his blood samples, that all possible tests so far had been done and had come back negative and my sons case had been fully discussed by a range of experts on a multidisciplinary panel.  Game changer.  I nodded and said "ok then"  "what can I do to reassure you?" she asked "You can't, I just have to trust you" I said.

She was right, a lifetime of study and knowledge under her belt had qualified her to make a bold decision to "test my theory"  My son is now injection free and so far he is  holding normal levels of neutrophils. She has my trust.  She now admits that when she saw myself and my young man in those early visits we were both still in trauma and that I need the facts first before making important decisions.  She has explained that, although they can't say for sure, they think a virus caused his bone marrow to become suppressed, possibly the B19 human Parvo virus. Myself and my son are both part of the 100,000 Genome project at Kings just in case there is an underlying genetic reason why he was more susceptible to the virus. This makes absolute sense for me from a Mum point of view as I've nursed him through some illnesses before that have hit him hard, he always seemed more susceptible to illness and at times he needed antibiotics to fight them off. 

With all this in mind I felt confident enough to leave my young man in the care of my wonderful Mum  What am I going to do without her?  and get way for the weekend to a science and music festival. There on the programme was a talk by an expert Immunologist called Daniel M. Davis. I found myself queueing for his talk.  I was gripped.  He explained the wonders of the bodies immune system so I bought his book; The Beautiful Cure. Signed copy.  Stranger things 

It says:

"But one of the especially wondrous things that Neutrophils do for our defence is that they shoot out a sticky web, or net, made from strands of DNA and proteins, to capture germs moving by. Think Spiderman, but on a minuscule scale of cells and germs. These webs contain antimicrobials which kill the captured germs"

So cool.
 

Uni finished some time ago and son did well, but due to his illness with too much to squeeze in and get up to speed on in so little time, he has some resits to do.  The Uni have been amazing, their knowledge of reasonable adjustments, willingness to meet regularly with me and keep the lines of communication open and flowing have been refreshing and welcome. He's now practising hard and hoping to pass.  Then on to his second year.  Crossing everything. He recently explained to me that he see's all the notes on the bass fret board as colours and that's how he learns.  This is a form of synesthesia, common in people with Autism.  He doesn't learn in the normal way so notes on stave's and timing signatures are a little abstract to him.  Square peg, round hole, as always.

Working in true partnership with health and education takes openness and trust from both sides.  I'm lucky to have found this.

Meanwhile, we watched War of the Worlds at the weekend (the Steven Spielberg, Tom Cruise one)  and the last monologue made my son laugh;

 "From the moment the invaders arrived, breathed our air, ate and drank, they were doomed. They were undone, destroyed, after all of mans weapons and devices had failed, by the tiniest creatures, that God in his wisdom put on this earth, by the toll of a billion deaths, man had earned his immunity, his right to survive amongst the planets infinite organisms. And that right is ours against all challenges, for neither men live nor die in vain." 

"The martians died of Sepsis" said my young man joyfully.

I'm still reading and learning, I may have to read the book twice.
The enormous amount of work and people who contribute to solving the immune systems never ending complexities in the hope of providing new cures for cancer, autoimmune diseases, Sepsis and much more are not often talked about.  The scientists devoting their lives to finding these are my new heroes and so they should be for all of us.   

"Clever Bastards"

 

"Just when I think I'm winning"

"When I've broken every door, the ghosts of my life blow wilder than before" "Well I'm feeling nervous, now I find myself alone"  "The simple life no longer there"

https://www.youtube.com/watch?v=wOW4-oWnDPw

I can remember listening to Japan's Ghosts over and over again on my cassette player in my bedroom back in the 80's.  All those minor chords, the lyrics and I probably did fancy David Sylvian a bit.

On the way back from our most recent visit to Kings College Hospital after another round of blood tests and discussions my young man said to me "I want to find out more about how the brain works, how lyrics can express our feelings"  Then that evening on TOTP2 Mr Sylvian caught me cold and I understood what my young man was trying to figure out.

Music, poetry, literature, art and dance are the real therapies they are how we find a common cause, a kindred spirit, a collective voice and relate to each other.

My son is now driven, he's found that spark and he's off. Back at Uni, no more admissions.

January did come around too fast accompanied by flu season and the NHS in crisis.  I was on full alert with anxiety at a level that was exhausting.  We'd had our flu shots and I'm so glad we did.  Lifesaver, quite literally.  We were lucky enough to see the top consultant at Kings.  Autoimmune Neutropenia was diagnosed.  My young man has rogue anti bodies that kill off his neutrophils, how or why this has happened no one yet knows.  For now he has to have injections every other day to boost his neturophil counts and keep his body ahead of the game. "You can put this behind you young man and get on with your life now' said our home town hospital consultant.  Just like that. No. You can't.  5 episodes of Sepsis in the space of 3 months is traumatic and the anxiety my young man has been left with is epic.

But there he is, following his passion. I'm full of admiration.  Life is not that simple either.  Injections everyother day that have to be kept in the fridge and given in the evenings, trust me that makes life difficult.  The thought that if you miss one young man could end up having Sepsis again keeps you living on the edge.  So I'm runing around after him with cool boxes and antiseptic wipes trying to get him to rehearsals and gigs and support sessions but gradually helping him to be independent again and deal with all this by himself.  That's going to take awhile because on top of all this he still has Autism. The ghosts of my life. But he won't be stopped, he has a lust for life that is contageous but exhausting.

Meanwhile, where was I in all this, where have I gone? When I find myself alone As a parent you hear alot of talk about codependency. I heard it recently on a programme called The Hunted. On it was a young man with Aspergers running from the hunters. (he outwitted them and won btw)  One of the hunters described the relationship between himself and his mother as codependent.  My blood began to boil because believe me as parents we want to pull away, we desperately crave our own lives and opportunities but our young people need extensive and quite often intensive support and I say this very loudly NO ONE HELPS.  For high functioning individuals on the autistic spectrum fit no criteria for support from a local authority.  There just isn't the money.

But just imagine if I could go to Uni, if I could get a job,if I could feel independent.  I could add to the economy, give back, be part of something again.  Instead call me codependent and the one to blame.  The simple life no longer there. 

Today my young man travelled to and from Uni on his own, came home and showed me a video uploaded by a fellow student of him playing The Clash with a group of them.  He looked so happy.

Perhaps my work here is done?  

Broken every door.