Sunday, April 3, 2016

Enough, just accept it.


I have had a tough few days. It’s not the fact I was solo-parenting my kid, in a different place, whilst he was getting used to the hormonal roller-coaster called ‘Puberty’. It’s not due to the permanent anxiety trip I am on — if it’s not selling this house, or buying another, it’s secondary schools and trying to find ways of keeping my son’s (and my own) friendships alive when we move. It’s not the aches and pains of getting older.

It’s my attitude that I have been fighting to change. I am altering my mind-set and in that time of self-analysis I don’t like what I see. I realise that I am my own worst enemy.

Today is World Autism Awareness/Acceptance Day. Over the last few weeks, in the build up to the month of April, I have become to realise that I am not as accepting of autism as I should be. It might seem a bizarre thing to say — I have a child who was diagnosed with an ‘Autistic Spectrum Disorder’ at the age of five. He was deemed autistic when he was born, and at the age of eleven he is still seen as autistic. Like all parent’s who have children that at some point have been given this clinical diagnosis, you could say I should be a champion of autism acceptance. However, I am not sure I am.

The mental tug of war I have been having with myself is the fact I have been championing awareness and not acceptance. I have spent my time educating everyone around me about how it feels for my son to have autism, that I have been restricting his ability to say it himself. I have been battling everyone in his name, but I have been using the banner ‘AUTISM’ and not under the banner of his name. I love him and all his quirks, but I have perhaps not been as accepting of his quirks I should have been. It has only been in the last few months I may truly been seeing the child before the disability.

So here is me, changing my thinking. To start I am going to change my language. My son, who I will call D, doesn’t have a condition or a disorder, he has a personality.. His personality is funny, silly, unstructured, moments of breath taking genius interspersed with periods of goofiness. He loves Minecraft and building computer games. He wants to be a scientist or a ‘Youtuber’ when he grows up. Or he might be a florist he hasn’t decided. He wants to live in an orange house, that is built into the ground, with a lab and a games room and he doesn’t want to get married to anyone — in fact he wants to live alone with his best friends visiting, but only if they go away again. He loves wearing skirts and he loves jeans. He loves all creepy crawlies, including the ones you rather he doesn’t. When we move he wants to move into the house with lots of ‘hidey-holes’ and he wants a quarter of the garden to build a huge ‘bug-hotel’. He is not a fan of busy crowded places. He loves to be squashed and tickled. He loves wrestling you. He likes to touch everything, and he hates certain smells and he doesn’t mind telling you. He hates squishy food especially banana, but he loves the fact he freaks out the waitress at the restaurant because he asks for carrot sticks instead of the chips. He has his friends and he loves making new ones. He likes school but only when they do the subjects he likes and if they stick to the timetable. He gets angry when he thinks you are being unfair and he always likes to get his own way. Normal eleven year old really.

Nowhere in that description -in talking about his personality- does autism have any part of it. I have to keep reminding myself of fact. If you want to talk about his autism do it in reference to his personality and not as a condition or a disorder. He has an Autism Spectrum Personality. He is not broken, or needs to be fixed. He is not upset about his personality, he is proud of it. What upsets him, is when you don’t honour his personality — but isn’t that the same for everyone on this planet. When you don’t honour someone for the way they are, you are being disrespectful.

When we were away this week, we went to ‘Techniquest’ in Cardiff. There they have a display in which a plastic ball get sucked up and then released into a series of seven inter-connecting tubes. Eventually the ball will drop into a vertical tube after following one of a series of probable routes. Due to the statistics and probability,  the result is that a perfect ‘Bell’ curve is created in the experiment, with a larger amount of balls falling into the middle tubes, and then smaller amounts falling on outer edges. Anyone who knows anything about statistics, (I did do some limited statistics analysis in college, all forgotten) will know that the ‘Bell Curve’ and standard deviation is how most of the people can be determined to have … well, pretty much anything due to probability. Professor Simon Baron-Cohen, from Cambridge University is a leading researcher and he specialises in autism. He refers to this ‘Bell Curve’ and highlights that when you are talking about autistic traits, everyone will have some. You have a violent reaction to certain smells, well that could be counted as an autistic trait. You get confused by party conversation, that could also be an autistic trait. You like deep hugs because they make you feel better? are you autistic? When people refer to others in hushed conversation and make the supposed insult, ‘He’s a little bit autistic’, they fail to realise that they are in fact correct. What they also fail to realise is that you could also be referring to themselves.  What we have to remember is that we are ALL a little bit autistic — this statistical analysis also allows for people who have NO autistic traits. I have yet, to meet one. What we need to remember instead, is that what we actually have in this world are ‘self-regulating’ autistics, and ‘non-self-regulating’ autistics.  Self-regulating autistics, are those who understand their limitations but have been able to create tools or practise techniques that allow themselves to cope with their limitations. With their tools and techniques they can go out into the world and do what they want and need to do. They rarely need help to function in society. ‘Non-self-regulating’ autistics are either unable to understand their limitations, or because their limitations are so overwhelming, there are unable to create tools and techniques to regulate their responses and so they cant do what they want to do, or do what they need to do. They need outside help. These are the 1-100 you see quoted in the paper.

Again people forget, that we label someone as ’autistic’, they are only ‘autistic’ in our society. Because they don’t follow OUR rules, we count they as having a disorder or having a condition. However, as anyone with a child who has the diagnosis, you can bet your life-savings, if your child hits an instant friendship with someone; if they reciprocate in conversation, actions and behaviours, then that other person is probably on the further end of the bell-curve as well. This weekend -before our trip to techniquest- we went to the Doctor Who Experience. D had his headphones on and his weighted backpack and with deep hugs he was coping with the crowds. Then during the tour, he helped another child fly the TARDIS, and the child - who I shall call B- fist-bumped D and D reciprocated. For the next two hours, D and B walked around the experience talking, playing and having a great time. They responded to re-direction when it was needed and although quirky in their play, they were not causing any one else issues or distress. As it turned out B’s Mother had three boys with an autism diagnosis, B was just one of them. When D asked B’s mother to have lunch with us, there were seven of us around a table. Those with a diagnosis, made the majority of our party, but there was not one issue between them. They talked, bickered in sibling angst, ate, laughed and to all intents-and-purposes, it was the same dinner many families would have experienced. However, that was because we were operating on their social constructs and NOT forcing the children to ours. We didn’t tell them to sit forwards at the table after food, because we knew it was easier for them to chat if they faced the opposite way. We didn’t batter an eyelid if one of them needed to be squeezed or had their headphones on. We honoured their regulating behaviours despite seeming to the outside world that they were inappropriate. They all understood why each were behaving like they were and there was no angst, just acceptance.

It’s easier when I am out and about, and D displays some regulating behaviour which people would count as strange, to use the phrase, “he’s autistic” as a way to stop the stares. Every time I use that phrase, I inwardly kick myself (which unfortunately is quite a bit). I hate using it. I feel like I am saying ‘I am sorry, he’s broken’, when in fact I don’t believe either of those things. It’s a way to stop the stares and the judgements, because its easier for D to do what he needs to do to cope, if people think he's broken to do it. It’s stops them thinking I am a bad parent, or that he is a bad kid. By saying, “he’s autistic”, I am making them aware of D’s personality, but I am not making them accepting of it.

There was a recent yougov poll which showed that 99% of the UK population had heard of autism. Thirty-three percent of people knew of someone with the condition, yet when we talk about the outside world only four-percent had a friend with autism and only three-percent worked with someone with autism. Everyone is aware of autism, they just aren’t accepting of it.

Enough already. We no longer need ‘Autism awareness’ as such — you have all heard of it. You have seen children with this diagnosis in shops and parks and restaurants. You have tutted when you saw them, or you have thought, “Poor parent, It must be so hard”. Stop tutting… we are not bad parents. Stop feeling sorry for us. There is nothing wrong with our child; all that is wrong, is your perception of our child. We all have our quirks and idiosyncrasies. We all have little habits that some find strange or repulsive. We all like and dislike different things. Do I go around and ‘tutt’ when you eat a marmite sandwich? Do I feel sorry for you because your child doesn’t like vegetables and will kick up a fuss if he is offered them at lunch? Is it wrong for me to think, “Poor parent, it must be so hard… did you see their kid? They won't use the blue crayon”? Yes it is wrong! So stop judging us and my kid!

I am going to go from this point on and I am not going to give you detailed explanations on why my kid does what he does. Well I am going to try for starters. I will tell you if there is something you can do to make his life easier, if he asks — can we have a quiet area? Can we reduce the crowds? Can we have some space so he can twirl? But I am not going to offer a deep long induced monologue on how he feels, he can speak for himself. I am not going to engage with you whilst I am giving him the deep hugs or strokes he has asked for. He wants them so he can feel calmer, what does that have to do with you? Accept it. I am not going to take off his headphones in the restaurant and I will sit in silence as he eats, because he needs me to do that so he can finish his food. Accept it. I will allow him to twirl and then hide because its a way for him to relieve his stress. I won’t stop taking him to shops, or coffee shops or parties, because it makes you uncomfortable. Accept it.

Accept him.

Wednesday, March 2, 2016

Prepping for the fight -- what round are we on now?

When your little bundle gets handed to you after birth, you are tired, emotional and perhaps a little daunted by what the next twenty years or so will hold for you. Most of us know in that haze of chemicals and hormones that we will have to protect this little being against a lot of what this world has to offer.

You are prepared for the fight. You resign yourself to the usual battles; poop-filled nappies, terrible two’s, school teachers, other parent’s, grandparents, the other kids in class and that very snotty lady at the checkout in the grocery queue. You know there will be sleepless nights as your child navigates the creek of childhood, with only a inflatable crocodile and a bag of illicit Oreo’s to help them; (yes, we all know we shouldn’t give out Oreo’s, but if it gives us a moments peace, then let them have the blasted cookies).

After a while, your -frankly naive- idea that the school bully is the worst that can happen, you are told you need to ditch the parenting manual they initially gave you and told “Your kid is ‘special’ wing-it”. You are left to travel the parenting version of the creek, and you only wish it smelt of poop and the hint of a paddle.

Advocacy, is the most important job you will have to do as a parent — even more so when you child has Autism (or in fact anything that places them outside of the very small, very finite, definition of normal). It’s the hardest and most daunting task you have to face.

As soon as your child begins the journey of obtaining a label, your game has to step up. You will spend the rest of your life fighting — and not for the cool stuff like the front row of the school play. You will have to fight for basic things; essential services that are open to everyone else it seems.

I am not going to sit and document the entire fight I have had to get D what he needs; it’s over eight-years and no-one has the patience to read the whole damn saga (I also don’t have enough alcohol and its only one o’clock in the afternoon). I will re-live the last six months though, and that’ll be enough to send anyone to the therapist. Get behind me though, my couch has already been reserved.

Next year, D goes to secondary school, (or junior high, or middle school, or whatever the place eleven-year olds spend most of their time, when its not in front of a computer playing Minecraft). He has a diagnosis and a “Education, Health and Care Plan” (EHCP), which is the new fancy word for a “Statement of Educational Needs”. This is a legal document that means the Government (and the local authority/school board) have to provide extra money and services to facilitate his education. It gives us, as parents, certain rights to name schools and extra power to obtain the services our kids needs. Yeah, I am wiping the tears of hysterical laughter too. As Douglas Adams would say, “This never happens”.

As in many countries, ‘Austerity’ and ‘Governmental Fiscal Restraint’ has meant that those who are unable to vote or make their voices heard over the shouting of business and banking, lose out on services. Child mental health and disability is one of the big losers. At a time, when more children are requiring help due to an overstretched education service, those ‘ring fenced’ budgets to help the more vulnerable are whittled away. Already we have seen grants and loans to help disabled children and their carers being stripped bare. We have seen schools struggle under the weight as more children, require more help with less money. Budgets are being slashed more comprehensively than a “Friday the 13th” movie.

Parent’s already at the limit of their “Advocacy” powers are having to push themselves further — to the point of breaking.

D is currently in an Enhanced Resource School (ERS) which has a dedicated ‘Autism’ unit attached to a mainstream school. This allows the children to have one-to-one or small group teaching when needed, but still the interaction with mainstream peers. It works and in the primary school setup, this has helped D extensively, not only with his academic levels, but his social-emotional health. His school is amazing and the work they have done with him has been phenomenal. I have nothing but praise and admiration for what they have done with the children in their care.

In the academic year of 2014-15, (D’s Yr5), I spent a long time researching Secondary Schools to find one suitable for my son D. It’s not an easy feat in South Derbyshire (look for the centre of the UK for those wondering where the heck that is). The options are limited and are literally unsuitable for the growing number of academically-able but high-need children who cannot access mainstream lessons due to transitional, social-emotional, and sensory integration issues. The two options we have open to us, are “special schools” that cater for high-need but lower functioning children quite often with poor communication issues, OR children who have fewer difficulties, have educational levels on-par with their peers and who can integrate into mainstream classes without disruptive behaviour. Even in this day-and-age with our “supposed” acceptance of neuro-diversity, it seems as if our only option for children outside of these academic-educational boxes, is a cupboard somewhere out of the way: the children’s educational development ignored and the schools primary role is that of glorified babysitters so that the government’s legal requirement has been fulfilled, until the children can be palmed off onto other services as adults.

My search within a thirty-plus mile radius of our home located only one school that could accommodate D and fulfil his needs adequately. This school is on the cusp of the area we were looking at and would require an hour-long car journey (each way, every day). The other schools, felt his academic levels were too high, or that his autistic traits were too intense; as one ERS autism unit told me, “He’s too Autistic”. How can a child be “too autistic” for an autism unit? Yet, we had found ONE school. This may seem like the end of the advocacy train, right? We have found only one school that can meet our child’s needs; the proof we have that this school is the only one that meets his needs; it’s in the same school board district (despite being an hour away); D has a legal document stating his extra needs and the school boards duty to fulfil them; and we have followed due process. What more do we have to do?

Yeah, you would have thought after all this time I would remember the ‘Elephant in the room’ — the big, smelly, mud-encrusted ‘Elephant’ called Derbyshire District Council Educational Authority.

To be fair to the SEND department of the DCC-EA, this is not a disaster of their own making — well, okay entirely of their own making, some responsibility for a lack of forward planning has to be laid at their door. (Last time I looked, six children with educational needs in Year 5 WILL become six children with educational needs in Year 6 and consequently six children with educational needs at secondary school if there is no geographical shift. Makes sense, right?  And I flunked my college maths courses).

At the beginning of October, we all placed on our forms, (as dutiful parents), the list of schools we wished our child to attend. It was the same form all parent’s of 10-11 year olds had to fill in, we just had a shorter list of options - one. I did however have a LONG list of reasons why we couldn’t chose the other schools. We chose the school that was unfortunately furthest away, so we made the hard choice to move closer so D didn’t have to deal with the excess travelling.

At the end of October, our current SENCO mentioned to us in an off-beat manner that county had identified a lack of services for our academically-able-but-high-need-children, and they were going to open a new Autism unit at the local secondary school for September 2016. Fantastic, amazing, our hopes and figurative prayers were answered. We braced ourselves for the onslaught of information and documentation.

Tumbleweed. Nothing.

In January, I chased up the new unit: I called social-workers, caseworkers, the school, local inclusion officers. Nothing. I provided a list of basic questions to the SENCO and head-teacher to the school hosting the “new” unit and they were unable to provide any information. This unit was meant to open in September and they couldn’t even tell us how many children would be in the unit and where the unit would be.

The week of the 22nd February, we were invited to “see” the new unit. Currently it’s a mainstream computer room. Next door to mainstream classrooms. Backing onto the Kitchens. With fluorescent lighting and antiquated fan heating. Not far from the girls bathrooms. There were no safety locks on the doors and easy access to an outside carpark and the rest of the school. There were no architect drawings that had been promised, just a powerpoint slide and a lovely set of idea’s. It became apparently clear that this would be the room the children would be using in September — except they probably wouldn’t. They would be in another room with children coming in and out all the time. In September, the children in the unit would be in a classroom with other children whilst building work went on … next door.

Now, I may seem like I am nit-picking. What’s the big deal? These are children that have to wear ear-defenders most of the time. They can tell which store the uncooked chicken was brought from just by the smell and they become distracted by the shadows changing on the classroom floor. They bolt and run if they become overwhelmed and have no safety-awareness when it comes to traffic.  Trust me, these kids could not cope with flickering lights, smells of poop and dinner and the clatter of teenagers moving in and out the classroom next door every hour (even if the building work was finished). When they couldn’t cope, they would run out into the car-park, unable to determine the danger.

Later, that week, we had a successful meeting with the local authority on the 26th; a group of parents talked to one of the senior people in the inclusion team. We talked about how the new unit suggested was unsuitable on a sensory and safeguarding level. How there appeared to be no long-term planning for the unit and uncertainty on how the KS4 curriculum would be taught. We thought of idea’s on how this issue could be solved, but that’s all they were… idea’s. As parent’s it was not our calls to make. We could provide solutions, but it was county who would have to make it happen.

On Monday 29th February, we discovered, the new unit would not be open for September but would be a year late. This one option -unsuitable as it was- was no longer open to us.

There are two legal deadlines which apply to ALL school districts in the UK. All education authorities should have provided a school place to pupils with an EHCP/Statement by the 15th February. ALL school places for secondary schools should be provided by the 1st March.

Of D’s friends, (of which there are five in his unit with an EHCP moving to secondary school), only one has been given a school place by the authority, and that is to a school that have already said they couldn’t meet his needs. Let’s say the parents going to tribunal is a given.

Today is the 2nd March, a day after the second legal deadline by which all school offers should be in place. I contacted the education authority on March 1st, and still our preferred school has yet to be discussed at panel and places allocated.

It’s a mess. For us, it’s a big emotional and financial mess. Because we do not know if our only choice of school will be able to offer our son a place, we have made a decision. We have placed our house on the market and reserved a new build house with a completion date of July, closer to the school. We had no choice. We could have waited till the authority had made a decision but by that time we may not have been able to sell our house or buy another before September. This gives us a few more weeks to allow county to make a decision and still be prepared either way — to stay or to go. I hate this. I hate that we have to put our family through the upheaval of a move just so he can go to school. We aren’t talking about parent’s moving so they can go to a ‘better’ school -one with higher academic results or better university outcomes- we are moving to an area so our child can come out of school and be a valuable member of society. A school that will not make him become a basket-case living on benefits for the rest of his life. A school that will give him a chance at getting a job and life-skills so he MAY be able to live without us — live independently. Is that really so much to ask?

Many people, when you mention you have a child with high-functioning (which just means intellectually on-par) autism, will think of “Rain Man” or ‘Sheldon’ from ‘The Big Bang Theory’. The socially awkward and strange people who have huge intellectual gifts for maths or music, or drawing. It’s not that at all. This rapidly increasing group of people are just like us, with the same intellect, but neurologically they are wired so that what we are able to see and filter, they cannot. They may well become IT specialists or programmers, but no-more so than the rest of the population. However, these children are falling into the gap of education. They are not being given the opportunity to become an IT specialist or in fact, anything else, because they are not given the right teaching environment to find out what they are capable of. They are either placed in an environment that can challenge them academically, but that is so chaotic, they cannot process the information admidst the general clamour of normal classrooms, OR they are placed in the calm environment of a special school but are not given the work that can challenge them. This has to stop. Not just in South Derbyshire, but in Derbyshire and the UK as a whole. These children deserve better; they deserve the opportunity to give back financially and socially to the community that supports them in their early years, by being the most productive members of society they can possibly be.

Am I really asking for too much?