I remember sitting in small meeting room as a Doctor and a Psychologist talked through Aspergers. How would it effect the future and parenting. A word that kept being mentioned was COMORBIDITY. Aspergers frequently co-exists with other additional conditions. It all depends on the individual. Sometimes you can work on one piece of the jigsaw, other times you have to look at the bigger picture.
Dyslexia, ADHD, Dyspraxia, OCD.
But the single most life affecting word
Social anxieties, health anxieties, anxieties.
It’s a constant struggle for Hawklad. The struggle is much harder during a pandemic. More anxieties all around him. But it’s not just about focusing on covid fears. As he briefly gets on top of one anxiety, another one takes over. Last night he struggled with
– infection fears,
– wider health fears,
– fears about touching surfaces and objects,
– return to school anxieties,
– anxieties about random lights in the sky,
– unexplained noises,
– eating anxieties,
– pet anxieties,
– school work,
– meeting strangers,
– life in general.
It’s a constant struggle. Reassuring, trying to manage the environment, talking. Some things the parent can help with but it’s Hawklad’s battle. Somethings need input from experts like Psychologist. Somethings just need a bit of help from life. Some fears may come and go, some fears may be overcome, some fears may become stronger, new fears may appear. It could be a life long battle for him. Over time let’s hope he can develop a range of techniques and strategies to help him manage his own anxieties. The parent is getting older. Soon what support he does get will vanish from the experts. In the UK adults are expected to ‘just get on with it’. That’s Britain for you.
Homeschooling and intermittent power cuts don’t really dovetail together, ever…. It’s always a good sign that you reach the official school closing time meanwhile in homeschooling land Hawklad has only just finished the first lesson.
So after well over two years an annual health and education review is being organised. An online review and actually a rather intimate review. I remember back to when Hawklad was 8. These reviews were ticket only events. Hawklad, The Head Teacher, his Teacher, a Teacher from his future school, a representative from the local education authority, the Lead Physio, a Speech Therapy expert, a Child Psychologist, an Opthalmologist, a Paediatrician, a Specialist from the local school outreach team and me…..
Fast forward to 2021. The review is pay at the gate. It’s the Head of Inclusion from the school, a representative from the local authority and me. Even Hawklad is refusing to attend 😂. His one support service left, his one last support person is on leave. All the other services have been cut although the need is still there. Yes changed but still there.
This sums up a lot of the support to children on the spectrum in this country. Children are lucky to get any support in the first place. If this eventually arrives then the support drifts away as the teenage years approach. Older teenagers and adults get NOWT.
Hawklad has always struggled with his fine motor skills. It is a condition frequently accompanying Aspergers and Autism. With Hawklad this materialises itself in clumsiness, difficulty grasping objects and not being able to ride a bike . But the main issues relate to struggling to use scissors, cut with a knife, using a keyboard and with handwriting. He grasps his pen too tight and the control is very disjointed.
For a few years he received some physiotherapy to help with this but eventually when he hit 13 the service was removed as he was deemed to be above the need threshold. The assessment was carried out by a professional who had no never met Hawklad and was completed within 10 minutes. I had been warned that this would happen as a cost saving measure. The test involved a few random simple ball catches, standing on one leg, a few hops and drawing a line that keeps within an outline. He failed a couple of tests but was asked to repeat until he successfully completed the test. Basically keep going until he passes and then he is above the care threshold. AND guess what the service can be removed.
He has been without support for over a year now. I’ve noticed that he’s starting to increasingly struggle again with some basic grasping skills. So it’s time for trying to do our own DIY fixes. Bouncing and catching balls. Exercises to try and relax his muscles. AND best of all Lego building.
But it’s becoming an increasingly common feeling. Trying to provide support and therapy which surely should be coming from professionals. Certainly not from an unqualified muppet Dad. Sadly I’m not the only untrained parent in this position.
It’s Autism Awareness week. It does feel like it should be Autism Awareness Week every week, every year until we finally start to make some real progress. Let’s not kid ourselves as we have are only just starting down that road.
This years theme is centred around inequalities. Inequalities that have become even more stark and exposed during the pandemic.
I tell you what is unequal. Bridge building. It’s always up to the autistic person to try and build those bridges. Our society, our institutions and too many of our communities are not interested. They see Autism through inaccurate stereotypes. Something to be ignored or brushed under the carpet. We’ve all experienced that approach. Individuality is frowned upon. People need to be forced into set moulds and templates.
Yesterday I was listening to the words of a really wonderful, unique and brilliant teenager. He was talking about his struggle with autism. His daily fight with inequalities and ignorance. Why was it so hard for people to understand. He was saying that every day he heard so many false stereotypes. But in fact he had a sense of humour, he liked having fun, he liked having friends, he had feelings, he cared. He was as valid as an individual as anyone else.
That lad wasn’t different he was UNIQUE. We all should be. It’s a better world for that.
This is my favourite place to put my hot drink mug. Just the right size. Nice height. Views over the farmers fields. It was kind of the people who built the house to put this here all those years ago.
Sometimes you just have to do things yourself.
I remember having a conversation with a leading clinical psychologist just before she retired. She told me about the UK Health Service and its approach to kids like Hawklad. She was so disheartened. Increasingly parents have to fight for any support. The Government (this government) are intentionally making it more difficult to access public services and receive support. The view from the top is that it’s not the responsibility of tax payers to fund these things. It’s down to the individual. The more you can afford the better the service you can secure. The psychologist warned me that as soon as Hawklad became a teenager the services which have been secured will start to ebb away. Reviews by ‘independent’ managers will suddenly find him just above the support threshold and he will be removed from the support list. When he gets to adult life she said the support would be completely gone.
Hawklad turned 13 this year so where do we stand…..
He hasn’t seen a Paediatrician in two years (was supposed to be every 6 months). He has dropped down the priority list and is at the wrong end of the waiting list.
Zero help from school on his dyslexia. The NHS is prevented from providing any support as it has to come from Education budgets now.
Zero help with his Aspergers. The psychologist was not replaced when she retired and the service is on hold (4 years now).
Zero help with his ADHD as he was reassessed as being above threshold.
He did receive physio therapy help with his dyspraxia. He was due to start a programme to help with his writing and keyboard difficulties. But two weeks before the programme was due he was seen by an Independent assessor (never worked with Hawklad before). After 3 quick tests which lasted 4 minutes he was assessed as being above threshold and the service was withdrawn.
Grief Counselling still officially waiting…
The last support he has is an anxiety counselling service. But sine his last wonderful support worker was moved on, the service has started to dwindle away. No idea when the next support session will happen. He’s unable to venture out of his house ot touch objects due to his anxieties BUT as he is not in physical danger then he is classed as a low priority.