1

Oliver the Angel

Sitting in the hotel bar on a warm evening in Corfu I met an angel.
He introduced himself as Oliver and he came over to ask Dylan if he would like a game with him on the pool table once the current game was finished.

Slightly taken aback by the bravery of this young boy who couldn’t be more than 8 years old. I explained that the name of the boy he was addressing was Dylan and that Dylan can’t really speak much.
I asked ‘Dylan would you like to go and play pool with Oliver?’

‘Yah beese’

And that was it. They are off playing pool overseen by Dad (to facilitate communication throughout the game) and watched by me sitting in the background trying to contain the tears of joy and pride both at Dylan for not being scared and embracing the offer of friendship and for Oliver and his parents for being so damn decent and inclusive.

Once I pull myself together I must go over and congratulate them for raising such a beautiful child.

Until then I’ll be watching this x

2

Medical misdiagnosis and mismanagement 

New research shows that autistic people die on average 16 years earlier than the general population and the gap in mortality increases if they also have learning disabilities’ RCGP 2016. 

Shocking.

As a RN influencing health is my life passion and no more so than health promotion.  To influence lifestyle changes and improve the health of a neurotypical nation is near on impossible. Add in sensory difficulties,  cognitive impairment, low financial income and lack of empathy or understanding from professionals and the statement above becomes a worrying reality.

As a parent I am lucky. Dylan is a wholly fit and well child. We only speak to our doctor when we need an official letter writing or a form signing.  He recently had a housing transfer form competed which detailed all GP interactions since birth. There were 4 in total. That’s is. Despite Dylans difficulties he’s a healthy kid!

As happy as I am that he requires so little medical input it has concerned me just how he would cope if he needed invasive or thorough investigation or if he became unwell. 

To target this I bring my medical kit indoors once a week and check all the kids blood pressures, oxygen levels and have a listen to their chests. If Dylan sees others completing tasks he is usually more relaxed with following their lead and his brother and sister are thankfully happy to model this, assist and reassure. 

Dylan has a resting pulse of 115. His blood pressure is often 130/90. His oxygen levels can dip to 95%. This is not normal. Nor sustainable. He finds the examination worrying and he jitters and shakes, visibly uncomfortable with what is happening and nervous about what may follow.  I try my best to reassure him but the fear is too much,  he only truly relaxes once the medical supplies are packed away and the bag is back in the boot of my car.

I have sneaked in when he was asleep and popped my machine on his finger. He has a sleeping pulse of high 70s with 98% oxygen. Much better levels but just goes to show the effects of being examined has on him. How much harder is it going to be for him when feeling unwell, being in a hospital, surrounded by strange machines, strange people, the unknown? 

I can’t directly change the horrifying statistics that report that Dylan could die at least 16 years early but if I can desensitise him to physical examination and teach him how to look after and preserve the health that he does have then it could at least give him a chance? 

0

Summing up

In January 2013 we went to tribunal to fight for Dylan to be home educated using his ABA programme. We funded his programme ourselves and were appealing for the education authority to fund this while Dylan was not at school (there are no local ABA schools). We lost. That time; all the preparation, the assessments, the paperwork, endless photocopying, strict deadlines, various depressing academic scores and grades, heartbreaking details of failure and disabilty. It was relentless and took over our lives for the best part of a year. 

It was a couple of nights before the big day when I realised what all this work was for. All this work and effort was for the tribunal not for Dylan. All this work had no benefit to him at all but was to try and make a point to the tribunal bods. None of who we had ever met, we would never see again and who had little interest in Dylan as a person. 

In realising this I wrote the following in preparation for our ‘summing up’ at the end of tribunal once we had put our case of Dylans needs across to the panel. The sad truth is we didn’t even get to submit it or read it out. It was snowing on tribunal day and the panel wanted to get finished and go home to ensure they didn’t get caught up in the bad weather.  

Tribunal day for Dylan; a years worth of work and stress was over in 90 minutes.
********************************Summing up

Dylan is our son, we are his parents. 

In the last 18 months we have also become his teachers. 

This is not a role that we planned but we have done it and coupled with a suitably differentiated curriculum and a teaching methodology appropriate to his needs he is both improving and learning.

It is this progress that keeps us going. Dylan is able to learn when taught in a manner that recognises and supports his difficulties whilst promoting his emerging strengths. We are ensuring that Dylan receives a positive education.

This is not our job, it is the job of the Local Authority to at least support us with this but instead we are here, at tribunal, pleading for financial assistance for our sons education to continue with their support.

As parents the whole reassessment and tribunal process has been a steep learning curve albeit a valuable one. We have so much more knowledge about Dylan and his needs than before this process began.

The witnesses recognition of both Dylan’s communicative intent and possible academic ability and it being buried beneath his extensive sensory and communication difficulty has left us heartbroken – Our beautiful boy has always been in there and is trying to learn – it wasn’t until we began this process that we realised how much help he needed.

We have highlighted throughout the day how Dylan is improving and learning successfully. He is happier, less anxious and more receptive to learning compared to the previous four years. However, Dylan still has complex difficulties and remains severely behind the academic and social level of his peers.

The proposed provision from the Local Authority has previously been tried and tested for long enough leaving Dylan with his needs unmet and him failing to make adequate progress with his learning. Dylan’s last 18 months using his ABA programme has enabled him to access education and he is learning academically, socially and gaining self awareness. 

For these reasons it must continue.

Thank you for having us here today, to let us come and have a chance at protecting Dylan’s emerging learning ability.

Ultimately, he is our child and we as his parents have to do what he needs.

********************************

This message still rings as true today as it did then.

0

BS

‘The system is awful’ -Mark Small.

 

In the UK this week parent of children with special needs have been furious about posts on Twitter from a legal company gloating about tribunal wins against children with special educational needs. This has developed over the last few days with the company at the centre of the atrocity ‘Baker Small’ appearing to lose a large number of contracts with Local Authorities as the penalty for him running his mouth off on a Saturday night. The effects of his comments which can be seen here (http://www.express.co.uk/news/uk/679875/law-firm-offensive-tweets-disabled-people-apology) have had a profound effect on me this week.

Our Education Authority used Baker Small for legal issues and certainly adopted the ‘winning’ mentality with regard to Dylan’s  education, not a thought for him, his needs or his future; Just the fight, the money saved, the battle won.

In the last few days I’ve felt insulted. Bitter. Angered by the weekend’s tweets by Baker Small who appeared to enjoy the difficult and heart-rending process of special needs support and tribunal.

I then relieved and reaffirmed by the thousands of parents who agree they and their children have- like us- been bullied by their education authority into shutting up and putting up while watching their children fail. I am glad the SEN battle which is often kept behind closed doors is now exposed and the general distaste from local authorities for families with disabled children is out there for the public to see.

Today, I feel sad, sad for our loss.

Sad for Dylan’s lack of support. His isolation that we as parents have caused by removing him from a substandard school place.

Sad for my loss. I’ve worked in excess of 45 hours a week, every single week, for the last 5 years to fund Dylan’s education because the local authority -advised by Baker Small- reckon that the shoddy placement provided by them was sufficient for Dylan’s needs and so refuse to fund Dylan’s ABA. We have paid over £5000 in tribunal costs to try to fight this and have since paid over £2000 a year to fund and maintain Dylan’s home programme.

I feel sad for Dylan’s brother and sister who always seem to play second fiddle to Dylan’s schooling which has dominated our home life for half a decade. For more than half of Grace’s life we have been juggling parental/teacher/advocate roles when we should’ve been dedicating this time to her and her brother.

I feel sad for Dylans Dad who has the absolutely wonderful job of teaching Dylan at home full time but has sacrificed so much in the process.

We didn’t cause this. We’ve been let down by what Mark Small acknowledged is an awful system and this breaks my heart. While fat cats like him are making money out of this failing system there are thousands like us who are paying the price. With our time, with our money and with our children’s lives. 

Gutted.

1

What a weekend!


As parents we work every day and base our working hours around the children; we scarcely have time off together to be as a family. Last weekend we did!

It has always been important to try and ensure that Dylan is involved with outdoor activities as much as possible. I believe it’s been this mission that has been invaluable for him, his siblings and us as parents. There was a time just after he was diagnosed when we knew that he was showing behaviours that were very noticeable and not ‘normal’ But we had no idea how to cope with the questions and stares from members of the public. So we stayed in. We hid and it was a real conscious effort to ensure that we got back out again.  Since then we’ve made sure we’ve always gone on holiday. On an aeroplane. We go to concerts. To the theatre. We go shopping. To the beach. Loud busy places where people notice Dylan. And we deal with it. We smile. We acknowledge the stares like it doesn’t matter and with a carefree ruffle of his hair we move on.

Last weekend was a challenge for us all. We went to 7 hour concert with 80000 people in attendance.  Loud music. Lights. Fireworks. Cramped seating. Nowhere quiet we can take him if it gets too much. A long loud cramped train journey home once he’s had enough.  Guess what, he loved it! We took some ear defenders which he has never used before. I never liked the look of ear defenders and have consciously avoided them. It was a concern that everyday use would result in Dylan becoming more isolated but for an exceptional event like this it was important to give him the option. He did spend some time without them listening to Jess Glynn but wore them the majority of the time. Everyone saw. Who takes a kid to a concert and puts headphones on? The looks felt very public, usually we would smile and walk off, leaving the looks behind and moving on with what we are doing, here there wasn’t that option. We had to sit with the obvious feeling of people looking. There in the middle of a busy stadium it dawned on me that people were looking, but that was just it; these were looks and not stares. I relaxed and enjoyed the day with the family. Dylan was certainly happier having the sensory prediction of the ear defences. Throughout the day/night we used his IPad to give him the choice of staying for the show or going home so we could ensure he was okay with everything going on and we lasted from 3pm till 9pm in the end! Throughout the show he would put them on and take them off. He used hand driers in the toilets which had *always* been a problem.  He used them at points on the train on the way home; they definitely got him through the whole day which enabled to little ones to enjoy the day too.

Sunday was another day out starting with lunch out and then onto Autism friendly showing of Roald Dahls ‘Matilda’ at the theatre. We have attended a couple of these disability awareness shows. Basically you are allowed to get up and make noise through the show without ‘do you know how how much I paid for this ticket and if you can’t be quiet you should leave’ mentality. The hand dryers were switched off in the toilets and there were loads of theatre staff that showed us where the quiet area was if we needed to leave the show midway we could sit in the quiet area and watch the live feed on the screen there. Dylan enjoyed the show and once again reached for the ear defenders due to the loud singing and the unexpected effects. He managed this; he appeared to enjoy it in places. The show was very loud and the acting quite dark in places but everyone enjoyed it before another train journey home.


A long but enjoyable weekend! 🙂

 

1

A Bump in the Road

Dylan doesn’t attend school.

He is home educated using a ‘differentiated curriculum to meet his specialist needs’.

His younger brother and sister attend our local mainstream primary school. Dylan was whooshing off on his scooter on the way home after dropping them off when he hit a bump on the street and tumbled off the scooter and fell on the floor.

Now Dylan is a cutely clumsy kid. He trips all the time and has little spatial awareness but despite this he stumbles rather than fully falling. Today he stacked it; one of those falls that makes you suck your breath in hard. Not nice.

Dylan quickly got up to come back to see me. His face showing the shock at what just happened and not really knowing what to do with himself. He showed me his wet muddy palms and I checked for cuts and bumps to find all was intact. Then, as soon as I was confident he was uninjured we got out the IPad. See Dylan learns in the here and now. It’s no good telling him about something hurting unless he can see it or feel it. He’s mind works too literally to understand the idea that something may hurt. Until it does.

So I leapt at the opportunity for this real time event to expose more language.

‘What happened Dylan? What did you do?’

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“You fell over, did you hurt yourself?”

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Some hand over hand prompting was needed as was some on the spot talk button formation for words that didn’t yet exist but we did it. By being able to talk about what happened he didn’t even cry.

 

Once home we again talked about what had happened with him easily finding the buttons to relay the event of the scooter and his sore hands. He could recall what I was asking, he could remember to navigate the IPad to find his new buttons and he answered me.

All in all, a good morning

 

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1

The ABA way

 

It’s been a busy week. Dylan follows an individualised ABA programme which we meet once a month with his consultant to discuss, review progress and plan further steps. It’s always a busy week, cramming a months’ worth of work, goals, problem solving and achievements into a 3 hour meeting is always going to be a tough feat. It’s lovely to see his consultant and discuss Dylan for 3 hours but the work it generates afterwards is huge. We make our own learning resources, source our own equipment and manage all our own documentation so for a mid-week meeting the ‘jobs to do’ list often continues into the following week!

 

ABA is a method of teaching which is not without its controversy and for that reason I am keen to stress that we use elements of ABA methodology, we break things into manageable tasks to be built on one another. We use positive reinforcement to encourage Dylan and we reward him for his efforts. We use extinction to ignore undesirable behaviours and focus on praising the good behaviours. There is no punishment, no ‘drills’ as may have been in the 1960s or reported of in the media. Our own Local Authority refuse to fund Dylan’s ABA programme as it is deemed worthless as it ‘doesn’t generalise learning.’ It is true that the stages of learning taught are tiny and with many, many components but the skills that are learned can be generalised and can continue to be generalised within lifelong learning. And that’s the thing with education authorities, they can’t see past a person being 16-18 years old. By then the educations authorities job is done and if it’s been done to a good standard then great; welcome to Adulthood. If it’s not done to a good standard then great, it’s not their problem; welcome to Adult services – you’re somebody else’s problem.

 

Dylan is approaching 13. He is able to write his name, he can add and subtract and so it’s time to progress with some life skills. Dylan takes a long time to learn things, mostly because of his incredible anxiety around things that are unfamiliar. Dylan not knowing what he should be doing or what’s expected of him makes his unfocused and can even make him self-harm. Dylan works hard to learn and succeed and the mastered skills he has encourages him to become more confident and focused. Then the learning changes, we move the goal posts set a new task and he is left feeling confused and anxious; that’s Dylan learning. It’s stressful for him! By using ABA methods he is positive in his learning:

 

He hasn’t got something wrong; he just hasn’t learnt it yet,

 

It’s not a mistake, it’s just a correction

 

It’s not us giving him the answers but enables him to see the right way of doing something.

 

It’s not cheating!

 

Throughout Dylan’s time previously in the special needs education system those from his Special Needs teachers to Educational Psychologists gave Dylan tasks that he can’t do, that he hadn’t been taught yet as a benchmark for how capable he is or may become. Until we met Dylan’s ABA consultant we hadn’t met anyone with the understanding that testing him like that is just setting him up to fail. That’s why ABA works for Dylan.

 

Dylan enjoys his life skills; he likes to learn to cook, is getting to grips with laundry and has growing experience of tools and DIY. For one of this month’s tasks he is learning to make a shopping list. He can already push a trolley, pay for selected items with a chip and pin card and pack his own shopping bags – all skills which had to be taught as previously Dylan had no idea when it came to shopping. Each element was broken down, practiced at home in his classroom, moved into practicing in the house, used in the shop with supervision and now he can do this independently with an adult present.

 

 

 

 

It’s taken 6 months but he can use those skills forever.

6

He will be okay

 

 

Everyone’s out in the garden, the little ones are making up a dance routine and Dylan goes over and discreetly knees his sister in the side. It’s not an aggressive move, don’t get me wrong it could knock over a small child but it’s not as violent as it could be. His sister carries on playing – turning a blind eye to her brother’s bad behaviour. Not me.

‘Dylan, come here. Why did you push your sister? Get your Ipad, what’s wrong?’

Dylan gets his Ipad, whining and groaning, obviously not happy and at risk of spiralling, spiralling up and out, up and boiling over into fury, grabbing at himself, the pitch of his whine becoming higher and higher, more strained at his at his inadequate attempt to suppress his feeling, to supress whatever it is that he needs to say, to shout about, whatever it is that’s swimming around in his head causing a whirlwind in his mind with no opening or outlet to be released so it continues to swim and swirl, continuing the confusion, the upset, the fury.

He uses all of his focus for a couple of seconds to block out the confusion of emotions and tenderly pressed the buttons.

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‘Sad? You feel sad Dylan?’ Dylan has never told us how he’s feeling before. We often ask him how he is feeling but he just doesn’t have the words to tell us.

pic2he gently pushes the buttons. Then againpic3

‘You feel angry?’

His little face looks at me, almost studying for a second – Did she? Did she understand me? He looks back at the Ipad and continues to press the buttons

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I feel my throat tighten, choking me ‘What hurts Dylan? Tell me, please?’

He beings to swipe through the buttons, looking intently for the next option that he needs. He glides through the array of pictures that I have clumsily placed on the screens for him. No pattern or purpose to them, just words that Dylan has been exposed to previously and we have feverishly hoped that he would retain and use if he ever needed to. He begins to select more buttons.

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‘Your head hurts?’ I ask and Dylan looks up at me with pain in his eyes, sad eyes and then he find the buttons to continue.

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And there it is. He feels excluded, he wants to play. His aggression towards his sister was because he wanted to play with his brother. I’m astounded but also saddened. Standing there at the back door holding the Ipad. A simple tablet which has just shown me a chink of insight into the personality of my beautiful boy, his feeling, his isolation, his sadness but has also shown me the ability for him to emerge out of it. My eyes prick as his sibling hear Dylans requests and take turns in kicking the football to each other, gently encouraging Dylan to play and share with them. And for the first time ever I feel a sense of calm. He talked; with intent, with purpose and he made things better for himself. I realised then; He will be okay.