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!

Times like these.....

You learn, you learn to give and give again. You learn how to hold on to your anger, hide your tears, smile and say its going to be ok when no one will tell you it will.

This year has been an anxious, stressful, high speed car chase with so many twists and turns but with a goal, one sparkling golden hope. University for my young man and we got there. We battled for support at college that wasn't happening due to an 8 month wait for an uptodate EHC plan, he got it and achieved a merit in his course. Four hours of practise and hard work every day meant he passed his level 8 bass guitar. A frantic last minute APEL submission secured his place. He was there. A university student. Floating on cloud 9. Disabled Student Allowance granted and support heading his way.

We allowed ourselves a moment of pride and celebration.  All those years of fighting for support and the appropriate aducation seemed worth it. This outcome had exceeded all our expectations.

Neutropenic Sepsis is scary, I'm not going to explain, google it.  I'd never heard of it until a month ago.  One week before the start of Uni the first bout hit my young man. He recovered and after three days in hospital he was discharged. He made one of the Freshers week events and the first week of Uni. He's not resident, he's commuting.  Social interactions and independent living skills are not sufficient enough yet to cope. We will work towards living away from home and living with other students bit by bit.  I rented an appartment close by the University for the first few days so I could be close to the student support people if needed and so he wouldn't run himself down with the travelling and could recover. Close shave. The first week had been a success.

Then he got really ill. Back in hospital again.  This is getting more serious.   No neutrophils. How I hate those little shits.  Canula's; how my young man hates them, and blood tests and scans. But you'd expect that but not a Bone Marrow extraction. Never that. Screaming, no one should scream like that and no parent should have to hear it from their child and hold them down. Then so much worrying. You learn to only think positive not to even consider the worse.  It's going to be ok. Discharged and well and back at Uni waiting for results.  I drove him there and back not wanting to leave his side.  The dog got some very long walks by the seaside, he was happy.

Then he got really ill again. He started to panic and worry "Whats wrong with me?" "I'm not going back to hospital" Swearing and shouting and tears in A & E and then another canula and antibiotics.  But then test results. No sinister underlying reason, healthy bone marrow. Breath again.

So after another four days in hospital we're home again with a diagnosis of Severe Idiopathic Neutropenia, an outpatient appointment at Kings, daily injections to get those little neutrophils to work and more antibiotics. I'm scared and I can't show it but more than that I'm so angry, rage at the unfairness. Why? and why now? After everything. Young man is massively anxious about having another bout and can't understand why this keeps happening.  He just wants to be at University.

Oh and we've got his Employment Support Allowance tribunal this Tuesday.  No idea if we're gonna make it.  We've waited 7 months and now we may have to postpone. All in all he's been to three assessments this year plus and assessment by an educational psychologist so that's four in total. The Ed Psych report was so important for support at college and University but so far it hasn't persuaded the DWP to change their minds.  There is much more I could say about all that but I haven't got the energy.

Right now we're living day by day and only allowing positive thoughts and hopes. It's times like these you learn the true value of everything you hold dear.

The Dark Side

I went to a festival recently, yes I managed to have 3 whole days away from my caring role whoop, whoop!  Jodrell Bank is an observatory in the amazingly beautiful Cheshire countryside.  I used to pass by it often as a kid when we went to visit cousins up north. I was told that it's radio telescopes sent signals into space and it listened for a response.  So eary, so otherworldly and so mysterious.  So when the chance to camp right under them, dance all weekend to music and learn about space came up, well it couldn't be denied.

Walking back to the tent one evening a friendly fellow struck up conversation with us and said his band was playing before Darth Vaders talk the next day. I mentioned that I went to school with his daughter, for a moment he imagined I had somehow been schooled alongside princess Leia and he got very excited until I mentioned that her name was Rachel and she was very normal and nice. We went to see Darth Vader's talk, he was very sweet, if a little forgetful these days and responded to one little girls question with "Yes Darth Vader does like my little pony" to a huge round of applause.

So we wondered around the observatory and all the stalls and it was full of children and then there it was, a pang I hadn't felt in a very long time.  All these children so fully engaged, making things, carrying out experiments, playing, asking questions and I said to my partner "The boys would have loved this when they were younger" and then I thought and did a reality check and remembered all the trips to science museums, observatories, exhibitions and play activities that we'd just about scrapped through with our nerves in tact. How we'd weathered the looks of disgust from other parents, looks of confusion from other children, broken up fights, made apologies and eventually given up and gone home.  And there it was; the sense of loss and I felt the grief of it all over again.

I meet parents with young children who are going through it and experience it everyday. I once had a bit of an argument at a talk I was giving about the process of acceptance where a parent said that grieving for the child you didn't have was not good for the child so therefore the parent had better suck it up and get on with it.  I disagreed and said I would never deny a parent the validation of their loss and not sit with them in it until they were able to move on. Feeling guilty of greiving well that just adds to the raft of emotions that a parent has to bear.

Back at the festival we headed for the bar to numb it all for a bit and enjoy the rest of the weekend. And we did, Hawkwind were pretty awesome and so was the weather.

Today I read a post about grief and it took me back to that feeling again.  Then I got a message from my son to say he'd failed his grade 8 bass exam and all was dark and gloomy for a while until he came bounding in saying he'd got it wrong and he'd passed. Phew! afternoon of tears and tantrums averted and all was sunshine again.  The he appeared at the patio doors paying his guitar, he was looking at himself in the reflection and admiring his mohawk. I laughed at him and told him he was looking good.  He came in and gleefully told me he had learnt bar chords on the guitar and started to explain to me all about them. I asked a few questions about notes on the fret board and his knowledge just blew me away (and went straight over my head) My son truly is Rainman sometimes, his ability to learn the patterns of notes and scales so quickly is amazing.  He's taught himself guitar in a matter of months, transferring his knowledge from the bass.  He still can't take 10 from 100 though or work out how much things cost.

We may not have had a "normal" life, it may not have been the easiest but I know all there is to know about Battersea Powerstation, all the names of the engines in Thomas the Tank Engine, I can build extrodinary lego models, make a sonic the hedgehog outfit in a matter of hours, complete Luigi's mansion with my eyes closed and give you a tour of the Bluebell Railway. I can also tell you what's its like to be in a minority, battle an unfair system, what should be in each section of an EHC plan (and what should not) and what the inside of number 11 Downing Street and the Houses of Parliament look like. But most crucially I can also tell you to stick with it, to go with it, to sit with it and to never give up because one day, like my day today, it will be absolutely worth it.

A Guilt Trip by Gaslight

Gaslighting is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or members of a group, hoping to make targets question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the target and delegitimize the target's belief.

A guilt trip is a feeling of guilt or responsibility, especially an unjustified one induced by someone else. Creating a guilt trip in another person may be considered to be psychological manipulation in the form of punishment for a perceived transgression. Guilt trips are also considered to be a form of passive aggression.

I know my son has a disability, a professional, fully qualified, employed by the NHS, Clinical Psychologist first broke the news to me when he was 6yrs old. Then a professional, fully qualified, employed by the LA Educational Psychologist said he had SEN that needed supporting via a statement.  Then all of a sudden civil servants employed in an education department in a local authority started telling me that wasn't the case. What eh? But........

"Oh no" they said "You see that type of disability is being over diagnosed..........you're a single Mum hmmmmm no father around hmmm.........it must be a struggle for you to discipline him"

"And the seizures?" I say "Did I cause those as well?"

"what those febrile convulsions" they reply "try not to overheat him, make sure he gets some sunshine......."

No, no I shake it off re read the lengthy reports all the Ed Psych's and Clinical Psychologist have written and go back and tell the civil servants that I want to take the advise of the Psychologists and find a specialist placement for him.

 
"What's that?  I ask  "No places? All full? So what now? His head teacher said they were damaging him in his current school and that he needs a specialist placement" 

"Well all the special schools are already full of children that really need them." reply the civil servants.

No, no I shake it off and I go and find a specialist independent school and take the civil servants to tribunal. Tribunal - that place where all the very qualified legal people make decisions based on the law, and they said I was right and that he must go to the independent special school.

A few years later and I'm at a parents group meeting other parents who have had a diagnosis of a disability for their child and for some reason one of the civil servants has come to talk to us about how the SEN system works. The parents there tell her that the LA don't have enough special schools and explain how they've had to go the independent schools. She says;

"Do you realize how much independent schools cost?" "This is taxpayers money that you are taking away from other children with disabilities that need services. The trouble with parents like you is that you demand a Rolls Royce service"

The parents hang their heads in shame, except me I know what she's up to. So I raise my head and I say;

"We are tax payers too, I wanted my son to go to a cheaper maintained special school but they were all full. I'm not banging on your door demanding money I just want and education for my son that meets his needs"

The other parents raise their heads.

But no wonder we are all loosing our marbles. This really is an abusive and toxic system. Stories of civil servants telling parents that if they haven't got the evidence then they won't be believed and when they do get the evidence it's an exaggeration in order to appease the parents need for diagnosis for their child rather than face their own failings in parenting..........Terms like psycho social are used as reasons for parents believing their child has difficulties. Labels like Munchhausen by proxy all add to the gaslight.

I got through it..... just. Now I'm facing it all over again with the DWP. Tribunal bundles have arrived and we are just waiting for an appeal date, once again I have to prove  that my son has a disability and needs the support of ESA whilst he is a disabled student not able to claim universal credit or work without support.





We are taken on these trips all for the sake of saving money, cuts and lack of funding. My role and the role of experienced SEN parents is to pull other parents away from the gaslight and off of the guilt trips and show them the truth and how to get justice.

Whoever wins this election needs to understand that this is abusive, this is toxic and this HAS to stop.

The Woman and The Snake

Once apon a time, well actually last week, a woman, who was gardening, came apon a snake.

Not smooth and slipperly but dry and parched on dirt that hadn’t seen a drop of rain for a week.

She picked it up and found a cool and shady place, she sprinkle it with water and splashed it on it’s face. She left it lying in a pool and placed a rock beside it to bask apon when it had had its rest.

Next day, still no rain, she went out to hose the flowers and out of that cool shady place slid the snake, who smiled. Surprised that snakes could smile she smiled back and then it spoke;

“why did you help me?” it asked

“you were almost crispy” she replied “of course I had to help”

“But I’m a snake” it said

“And?” she said puzzled

“I thought you wouldn’t trust me not to bite”

“Why would you do that?” she replied

“Because of that poem”

“What poem?”

“The one about the kind hearted woman who got what she deserved by helping a snake”

“got bitten?”

“Yes, after she’d helped it” replied the snake

“But why would it do that?” asked the woman

“Why wouldn’t it?” said the snake

“Well said the woman, when I was little I was told that snakes were slimy and cold and not very nice but I decided to find out for myself so I went to a petting zoo and asked to hold a snake.  It was warm and smooth and it liked being held. It’s handler told me all about snakes, that snakes only bite to kill what they need to eat or to protect themselves and that not all snakes bite anyway.  Snakes don’t eat people they only eat mice and small creatures.  A snake did once bite my father but that was when he walked into the undergrowth to take a pee, he stepped on the snake and peed on it so that was kind of understandable.  My Dad said it was just like a bee sting and that both of them had lived to tell the tale, he didn’t hate the snake”

“I wish the world had never heard that poem” said the snake “now no one trust us and no one wants us around, they fear us for no reason.  It’s put my friends and family in danger.  Some young snakes are now getting angry about it and have started talking about actually biting people”

“That’s crazy” said the woman

"I know" said the snake, "I hope it doesn't happen"

The snake sat down next the woman and shook its head.  The woman looked at the snake and shook her head. 

“Why doesn’t it rain” asked the snake

“Global warming” replied the woman “But that’s a whole other story…….”

Reference: https://www.youtube.com/watch?v=Qu6_2hFTw74

Not disabled enough

We currently have two university places on offer to my son.  That is a sentance I never thought I'd ever type.  But it's completely true.  "To be a good bass guitar player you must practice for 4 hours a day" is what it says in my sons bass tuition book. And so he does.  For 4 hours, no more, no less, every day.  For the sake of our sanity we bought one of those cabin things and put it way down at the bottom of the garden, next is the sound proofing.  He sits with ear protectors on and the bass amp up all the way "because I like to feel it Mum" and practices studiously.  His amazing memory means he retains all the informtation which is then cemented in with the continued overlearning he does.

At my sons recent ESA (Employment Support Allowance) assessment, the last question the assessor asked him was to take 10 from 100.  He couldn't do it and refused to answer.  We left with my son calling himself an idiot and reeling from the experience.  The assessor sat in front of his computer, asking each question.  My son didn't understand the questions and the assessor looked puzzled at my sons responses. The assessor looked at me for an interpretation but I refused, he was there to assess my sons ability to function without support. All I explained to him was that my son has difficulty understanding complex verbal questions due to receptive language difficulties which is part of his Autism and perhaps if he thought about wording his questions differently it might help.

Due to a broken heart, my son was dreading Valentines Day this year  (he's considering The Undateables)   I was dreading it too as it was assessment result day. I was laying out my sons clothes for the day and cleaning the bathroom up after him when my phone rang.  "unfortunately your son does not qualify to continue to receive ESA"  Apparently you need to "score" 15 points at the assessment to qualify, my son somehow scored nil point. So no more ESA and no Mr DWP he can't get universal credit as he's still in full time education and yes heading towards University.

I am beginning to feel like all my knowlege and all the professional assessments of my son are worthless.  I am still waiting for an updated EHC plan from our SEN department, nothing I seem to say has any impact and is ignored.  The lack of support at college recently led to a huge meltdown which his father experienced for the first time.  It shook their relationship and both are dealing with the fallout of it.  The college are now being supportive and putting in as much 1to1 staffing as they can afford.  They are not a specialist college but have a general ethos of tolerance and understanding towards difference. He will hopefully now be better able to cope because of the support they have put in place and the understanding he gets. So why does the DWP think these are things he won't need in the work place???

Unless the DWP or the employer are prepared to put support in place the chances of failure in the workplace are huge.  I can confidently say this because I've been the one that's had to pick up the pieces and fight for support for him for the last 13yrs.  But right now I don't feel like anyone believes me.  I've made it all up in order for my son to get 50 quid a week.  Scrounger, benefit monkey, fraud, lazy etc etc are all the things I feel myself and my son are being labelled right now.  Perhaps I should just step away, withdraw my support, stop fighting and let the system take over.  George Osborne and Ian Duncan Smiths great vision was to empower disabled people into work.  Maybe I should let them take the reigns and empower my son, anyone got their number?

Meanwhile this sketch is the only way I can explain the system to my son, its visual so it helps.

Enjoy!

https://www.youtube.com/watch?v=fMVu-dXX5JA