The Sign Says Don't Walk

My son loves Rain Man. There are a few films he can watch again and again; Hot Rod, all of the Cornetto trilogy and both Inbetweeners movies.  But Rain Man is his favourite.  It's a bond between us too.  If he farts in the car I say "Rain Man did you fart" he giggles and says "Yeah" in his best Dustin Hoffman voice.  He's an incredibly good mimic.  If he's being inflexible with something he's wearing or wants to eat then I lead him into the Kmart sketch by saying "Of course this is not my underwear" We both end up laughing and he gets my point, sometimes changing his choices but other times we both know its not possible but can laugh. Just take a break. It's a film that's helped him have an insight into his own diagnosis and he recognises himself in a lot of it. 

It's also a film that divides some of the Autistic community.  It's fair to say it presents a some what out of date stereo type and could lead to just understanding one narrow representation of  Autism.  It gives one story, one example.  Yes it is of it's time and thankfully terms like "Idiot Savant" are now not used and yes an Autistic actor should be cast instead of Dustin.  It does, however, give examples of how the world we have created is experienced by Autistic people and how that impacts on those trying to care for them. Some understanding

I haven't posted in a while as things have been too difficult. I've been battling to get him services, its been over 2 and half years now.  Covid has not helped and has had a big impact. It's increased waiting times and made communication with agencies even more difficult.  As he's over 18 services mostly insist on speaking to him directly, this presents major problems.  A service provider may insist on calling or emailing him directly to arrange meetings and appointments. He rarely responds so they then take him off their list which means all the time I've spent fighting to get him the service is fruitless unless I then contact them myself and try and explain and rearrange.  Some services get it and allow me to set up a meeting or appointment so that I can remind him and make sure he picks up the phone, emails or signs into virtual sessions. So then he's there engaging, all good you would think but no.  

Just like Charlie Babbitt us parents/carers develop a way of communicating with our loved ones.  He understood that if the sign says don't walk Rain Man would stop whether its appropriate or not. We understand that they may not be in pain at the moment you ask so will say they're ok but that doesn't mean that next week they won't be in so much mental pain that they can't function. So if you ask are they ok and they say yes its not appropriate to take a service away from them.  We understand that they may want to live independently and say that they can but that doesn't mean its possible without support. My last conversation with a professional was madness. My son had told the professional that he wanted to live independently and did not want "carers" Their view was as this was his wish they wouldn't be providing support.  I had to try and explain Autism and how it affected him. "Have you ever tried leaving him on his own" was their response.  Great safeguarding, well done.   I shouldn't have to do this.  Services should do so much better. No my son is not Rain Man he presents so much more able.  Yes he can drive, yes he can play a musical instrument, travel on a train by himself and order a takeaway. He can even go out, get legless, have a good time and find his way home but life is so much more complex and so is Autism. 

https://www.youtube.com/watch?v=E3dC71OAhcs

He'll be anyone's friend if they offer friendship. He'll give them money if they ask and keep giving them money if it means they'll be his friend.  He'll take drugs to please his friends and be part of their group. Whatever it takes.  If a "friend" tells him that people without jobs on benefits are scroungers and a waste of space, he'll feel ashamed and a failure and push himself into trying to achieve something that is so difficult he ends up in crisis. If a "friend" tells him his lack of progress is because of all the foreigners he'll agree just to please them. He won't see that his lack of progress is down to the fact that no services to meet his needs are being commissioned in his community and he won't believe me over a "friend" because disagreeing with me won't make me walk away.

Rain Man is of its age but has society moved on? Care in the community is more often than not neglect.  I had a commissioner once ask me if Autism was still considered a disability. Of course I directed her to the definition under the Equality Act.  It seems now though that as the achievements of Autistic people are celebrated and recognised it blinds some professionals to the difficulties they have. Or could it be it gives them a convenient reason to deny support. Hmmmm I seem to be on their merry-go-round again. 

So the question; does Rain Man want to live with Charlie Babbitt or stay a Wallbrook? Well my Rain Man wants a bit of both. He wants us both to visit him in his own flat and take care of him whilst he lives the best life he can. 

And me, what do I want?  3 million dollars or I'll except a bit of respite and an end to the endless madness. 

Brits

 

There you were just being you

Loaded down with so much more

Just being you

 

If only they had tried

If only they had tried

 

Wrapped in chains they adorn but you still feel

Patched up, held together, zips and pins

Held together

If only they had tried

If only they had tried

 

There they are, but you're not there

Admired and rewarded, look like you

But you're not there

Left behind

If only they had tried

If only they had tried

#AutismAcceptance

#AutismCreativity

Now make this a song

Take everything

Structure

I haven't got a song for this one, the music has stopped. The day I tried so long to prevent, put off and postpone finally came.

The first days of school for my son and I were hard, gradually the excitement and hopeful anticipation of all things school ebbed away and it turned into a place of rejection and isolation for us both.  Two years in mainstream were two years too many, they did damage but the specialist schools that followed, although sometimes somewhat imperfect and experimental, at least gave him friendship and acceptance and also gave me support and friendship too.

University was a punt. Son had done so well in mainstream college the year before, even sleeping over with a new friend in Brighton once a week.  Seeing him perform at The Old Market at the end of the year was quite possibly one of my most perfect days.  I was worried about Uni but the door was open and son wanted to go.  You all know the story of the first year, the trauma of his illness in the first few months certainly didn't help but he passed.  I was really worried about the second. Then after the first term the pressure was starting to show. Social isolation and rejection were really kicking in,  both in real life and on social media. We met with the Uni who again were great and we tried to limp on for another few weeks until son could take it no more. He has deferred his course for now.

My son’s mental health has been at the heart of everything I've tried to do for him. Building resilience in a mainstream world is something I've tried to help him with in the last couple of years as he'll always have to be part of it in his adult life. But there is only so much resilience that anyone is capable of without expert help and support.  I sat next to him at the GP whilst he explained how he was feeling and watched him complete a questionnaire which showed just how much he was suffering and in pain. That was the day I had always dreaded.

One of the things the GP asked about was what he was going to do with his days now.  It had only been a week, he was still coping with the decision he has made so couldn't even begin to answer the question.  I said I knew the importance of structure and that I would be around to help him with that.  What this actually means though is another day I have been dreading, the end of education and the transition to work and adult autism services.  Ensuring structure in his day, friendship and a sense of purpose.

I used to sit in meetings with other parents who had been battling for years and whose children were adults.  I was full of fight and passion and focused only on education. I used to listen to the older parents but not properly, I just couldn't cope with looking that far ahead. My work with the NAS, however led to my involvement in the Autism Act which was the first step in ensuring services for Autistic Adults who fell through the cracks in local authority services. We all know that adult social care is chronically underfunded and the focus is mainly on the elderly but there is a tsunami of young adults heading towards the social care system who don't meet the restrictive criteria but who desperately need services. My son is one of them. I'm already seeing the huge gaping holes in systems and services and I'm part of my local Autism Partnership Board trying to change things. But as one councillor recently said "The wheels of local government move more slowly than a glacier on grass".

So I'm asking if you can help me push that glacier along a bit by filling out the NAS questionnaire below which is following up on the Autism Act and putting pressure on the powers that be to meet statutory requirements and fund services properly. There is very, very little in our local area. Structure??    Hmmm how so.

https://www.autism.org.uk/get-involved/media-centre/news/2019-01-24-autism-act-survey.aspx

"...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.

Some you win....

The tribunal service upheld our ESA appeal. Young man was not well enough to attend and it wasn't the right environment for him to be in, sanertiser gel aside. Normally I would have overprepared beforehand.  I would have reread everything, gone over current cases, written notes and slept well. All four cylinders. I stumbled in full of exhaustion and nerves having glanced over the tribunal bundle an hour before.  The panel were incredibly kind but very thorough. No Mercy. They asked me lots of questions and wanted lots of examples and explanations.  They knew about my sons recent hospital admissions, they couldn't take it into consideration in the case but they did seem to be sympathetic to my brain fog.  Afterwards I sat in the waiting room whilst they deliberated and I thought I had let him down. Tears of relief came with their verdict and I quite rudely fled the room before they could see, saying thank you so much, thank you.

A week later we were back in hospital.  The battle to get seen within an hour at A & E was harder, they were overstretched and I had no choice but to be pushy.  The wards were full and nurses were stressed, I had to be pushy to make sure my sons drip was working properly, to make sure his bloods were done, his water was topped up and he had pain relief when he needed it. All the staff, the doctors, the nurses, the care assisstants and the cleaners treated us with kindness and expertise but they rushed to each patient and I could see that the prospect of something being missed was real. I stayed late until he was stable and comfortable and no more could be done, then I could go home and get some sleep.  A treatment programme was discussed with more regular injections and prophylactic antibiotics, which I was happy with but our discharge seemed too reliant on the new programme and too rushed. Young man was anxious and so was I.  He wanted to get back to Uni so I journeyed down with him. The sky went red, the dog got more walks but we were unsettled.

 

Birthday! what now, so soon, 20 years old, no longer a teenager, a university student, a life changing health condition. He had birthday blood tests which showed his neutrophils to be sky high, wow!  We were over the moon and told to lay off the booster injections for a couple of days.  He had a great birthday, meal out with friends, choccywoccydodah cake, new DM's, blue tooth speaker etc.....Then late Monday evening I called an ambulance. Turns out a sky high count of neutrophils can mean an infection. What's going on?

When we arrived we were taken to a new unopened part of the hospital which was a resus unit. It was quiet and new and the staff were amazing.  Once young man was stable I was told that there was a bed crisis, we'd have to stay in resus all night.  The lovely nurse found me a spare trolley to sleep on and even searched for a pillow for me.  Such kindness.  The next day an isolation room was found in a ward where old ladies recovered from hip surgery. As we walked up to the ward I asked the nurse when the new A & E wing would be open, he said March but that what they really needed was more beds.  A 6'3" autistic, neutropenic punk with a 4 inch mohican was quite a shock to the old ladies but for some of the staff a welcome change.

My young man likes to ask people where they come from and what their favourite music is, it helps him to be less anxious.  So he asked all the staff he met in A & E and all the staff in all the wards.  I can tell you that they came from The Philippines, Spain, Portugal, Italy, South Africa, Ghana, Poland, Rumania, India, Pakistan, Jamaica, Somalia and Liverpool.  One nurse with a head scalf happily discussed why Terminator 2 was far superiour to Terminator 1, which my son totally agreed with . Not many liked Punk but alot did like Reggae. What we definately saw was humanity, caring and humour.
 
I ran up and down the hospital talking to the heamotology ward, stayed late again to make sure meds were given and drips were working and jumped up and down when his viens got infected from the canula.  We were moved to another ward and then finally to the heamotology ward where he was safer, phew.  We stayed for the weekend this time, my brother bought his bass in so that with an adaptor, an app and some headphone he could practise for a bit.  Watching I'm a Celebrity on ITV player was a god send and we managed to fight off the boredom.  But I was glad that they were taking their time.  New antibiotics and regular injections every other day with no gaps until his blood levels were back up, then we were discharged and continued on with this treatment.  Its been 20 days since we were last in hospital.......

Kings wanted a second Bone Marrow aspiration done.  Can't go through that again. We journeyed to Denmark Hill and were relieved to find heavy sedation waiting.  Young man slept through it. Then on to CT scan which was quick frankly a walk in the park. What are they looking for?  So now we wait until Jan when we get the results.  I'm putting massive amounts of distance between us and January right now.  Savour the break, no more fighting, pain or trauma and no more being pushy. I'm just looking foward to plain old boring life for as long as possible.

Happy Christmas, especially to the underpaid nurses in the NHS. May 2018 bring you a payrise!