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 been over 5 years since I sat down in a restaurant….. That’s as rare as a start to the morning like the photograph above. That’s as rare as my football team winning something. Oh hang on the last time that happened was 1969. So hopefully not that rare….😂😂😂
A bit like my so called football team and silverware, the next restaurant trip is not looking particularly imminent. Hawklad isn’t keen. I can’t think of the last time I went with my family to eat out. Maybe a couple of picnics or a garden bbq before the world changed. It’s well over a decade since I went for a meal with a friend. The height of culinary excellence with friends has been limited to the very occasional grabbing a bag of crisps on the way to see my team get beat again. And the other side of the family is understandably very much more distant now.
But here’s the thing. I’m not missing the food. I’m much happier with a bag of chips , sat on a sea wall and fighting off the mad seagulls. I’m not in a mad rush to expand my social circle again. Do you know what I miss about restaurants. That feeling of being grown up every so often. Having to smarten myself up, even combing my hair…. To sit properly. To feel like I’m doing stuff that other people are doing.
That probably makes no sense at all and anyway it’s not happening anytime soon.
We are trying something different this week. A new way of trying to manage Hawklads anxieties. At present they can consume his thoughts, consume his day. They just seem to spread out and spiral out of control. Well let’s see if we can try and contain them a bit. This week when he gets an anxious thought then he makes a note of it and then immediately tries to distract himself. We now have a 30 minutes slot each day in which we discuss the anxieties he has made a note of. Talk them through.
Let’s see if this helps contain his anxieties. Helps him recapture more of his day.
Hawklad has been looking for a marker in the sand. Something to aim for which is solid. To him all the attempts to build bridges back into the wider world has to lead to something.
Yes school could be that. A return to the classroom. But he’s still not convinced that it’s right for him. Is he better off learning outside the school system. Plus it’s not a definite marker. It can be delayed. If the bridges aren’t ready say at the start of September, then maybe October might work.
Well now we have a solid marker.
One of his favourite bands, The Darkness are playing some gigs in December. So we have bought tickets to see them in quite a small standing only venue. A definite date which is far enough away to allow for steady progress. A true test of his progress. We can leave it to the last minute to decide if he’s ready. We can even get to the venue and Hawklad can see what it feels like. If he’s uncomfortable then we can just grab a pizza and come home. He’s seen them twice already so it won’t be a disaster if he doesn’t manage it this time.
You kind of assume that your country is geared up to support its young people. That they matter. Well they should matter and countries should be geared up. But this is Britain, where support and mental health services have been under funded and in recent times cut back. Britain which has a Government that wants to return to ‘good old Victorian values’. Britain where children are only seen in terms of future economic value. In Britain where support is frowned upon by those in charge. In Britain where children taking time off in the immediate aftermath of a significant bereavement is described by the Government as ‘extended holidays’.
In 2016 Hawklad lost his granny and mum within 6 weeks of each other. A traumatic experience for anyone but for an 8 year old with Aspergers, it’s an emotional maelstrom. But here’s the thing. Sadly he won’t be the only child in this position. But where’s the support. Schools are not set up to cope. In Hawklads case the school cared but where clueless. The specialised education services in the area had been effectively closed down to meet savings targets. I approached his Doctor who just referred to child mental health services. He warned that they had a backlog of cases. That was all the Doctor did. Hawklad was already on the waiting list for Aspergers support.
That was it for over a year. No support. Left up to me, someone who was struggling already. How do you start to help someone when you are broken.
Finally we got to see the Child Mental Health Team. They worked on anxiety issues but no bereavement counselling, no Aspergers support. Luckily his dedicated worker was wonderful and she did try but it was not her area of expertise.
Fast forward to 2021 and Hawklad still has not had any bereavement counselling. Taking a wider view. He had some help with a physiotherapist but that was cut. He started speech therapy but that service was cut. He has had a few months of Aspergers related support but the specialist retired and was not replaced. He has had no dyslexia support. He does get some support for anxiety but that is patchy.
AND he is one of the lucky ones in Britain….
It has to be better than this for all our children. THEY ARE NOT JUST ECONOMIC RESOURCES. It won’t change here under this Government, it will only get worse. BRITAIN is BROKEN when it can’t care for its children.
Meet my new Garden Helper. She hasn’t quite worked out that green waste goes directly into the brown bin….
I must admit that was just about beyond me today. Should it go in the green or brown bin, the recycling containers or the compost heap….. I’m clueless today. Lack of sleep and the second vaccine doesn’t help. So today was a struggle. Trying to stay awake, trying to think, trying to work, trying to be a parent. Today was hard work. Very few smiles. A survival far.
But at 12.40am I’m still here. I’ve not burnt the house down. Not crashed the car. Ok I did drop the mobile and cracked the screen. But I got through the day. Now tomorrow is almost here. New start. New hope. Another chance.
Maybe me and that cow can even figure out the recycling ……
Apparently Hawklad missed 6 exams last week. That’s a whole lotta exams missed in just one week. On the bright side, Hawklad did complete 5….. 5 out of 11 is almost a pass.
Hawklad completed those 5 exams because the teacher or teaching assistant emailed him the paper. In the 6 he missed something didn’t happen and I just can’t put my finger on what didn’t happen…. Can you.
What happens next is anyone’s guess. The teachers are now tied up in the year above mock exams. It’s another mess. We bury will be so glad to see the back of this school year.