Posted on by bereavedandbeingasingleparent · 79 Comments

The tree of hope

Three years ago I was trying to get my head round organising my partners funeral. At the same time I was trying to empty my mums house and wrap up her loose ends. My head was completely spinning. I was in full zombie grief mode.

One family personal trauma doesn’t stop the world from spinning. It carries on regardless. So I was immediately faced with continuing the application for our sons Education Health Care Plan. Sat bewildered at my partners desk trying to find on my own the words for the final application form. The words came so easy when it was two minds. Now the one failed me. Then the black pen stopped working. Couldn’t find another and the form had to be completed in black on the pain of ……

So I set off to the shops to buy a pen. But quickly I was lost in a sea of grief and unanswered questions. An hour later I found myself at a random garden centre. Clearly a good choice for stocking up on pens. I wandered around aimlessly looking at plant after plant. The cctv must have been focusing on me as I was clearly not acting like your ordinary shopper. Then I came across a sad looking tree. Actually more like a snapped twig. The label said ‘discounted Pear Tree due to damage’. I felt sorry for this broken life form pushed to a dark corner of the store. Now no more that an afterthought. It felt like me.

So I went in looking for pens and came out with Groot (Marvel Universe).

Over the next three years Groot has grown and is now about 5 feet tall. Looks surprisingly healthy. AND this year for the first time it’s produced pears. Just FOUR pears. But it’s not the fruit crop which is important here. It’s something completely different. It’s HOPE. When personal tragedy strikes your whole world is turned upside down. It will never be the same again. You move from creating memories together to replaying memories in isolation. But you can’t live your life in those memories. Life has to go on. In my case life did go on. Yes I miss her dearly. Yes sadness always feels just round the corner. Yes I’ve become increasingly isolated from society. But life has gone on. Sons Education Health Care Plan was approved. I’ve changed careers. Progress has been made with Dyslexia. The house no longer feels like a funeral parlour largely down to the addition of a barking mad dog. I’ve increased the range of foods I can destroy. And Groot is thriving. That gives me hope.

Posted on by bereavedandbeingasingleparent · 62 Comments

Dyslexia we are on your case

The dog is happy. His friends are back in the farmers field. And yes I still haven’t moved the shovel from last months gardening. And yes I still haven’t removed the two old Catherine Wheel fireworks from the fence. Wonder what the Guinness Book of Records listing is for the most old Catherine Wheels on a Yorkshire Garden Fence is.

Last night we had been talking football. Namely clubs which go out of business. Son was struggling with the economics of the process.

Dad. Basically with the billions and billions of pounds generated by football how can a great club like Bury be allowed to go out of business. It’s the economics of the madhouse. The rich get richer the poor get poorer.

Can’t disagree with him. Football is just a reflection of our society. Someone bleeds an asset dry then discards it. The person with money moves on leaving a scene of desolation behind for others to live with.

Dad which other clubs have gone out of business. Don’t worry Dad I will google it. How do you spell business.

Within a couple of minutes son is doing a pretty awesome job of reading out an article. Yes he was getting some of the words wrong. He had to ask me to read some words like ‘Maidstone’ and ‘Aldershot’. But I understood fully what was in the article.

He’s found a way of getting by. He can now read pretty accurately about a third of the words. Another third he can get part of the word correct which allows him to guess the rest of the word. And as long as he understands what the subject of the text is then he can guess the remaining words – fill in the blanks. It works. In his eyes he’s moved from can’t read to can ‘sorta’ read.

I fully realise that he is unlikely to have enough trust in the people around him in the classroom to demonstrate this at school. The teachers won’t have the flexibility to exploit this educational opening. But at least now rather than just guessing what text means he can have an educated guess. Even that will help his self esteem. It’s progress. Self achieved progress.

Posted on by bereavedandbeingasingleparent · 79 Comments

To be or not to be

A beautiful delicate flower. Unfortunately it has decided to grow directly on the mad dogs preferred route to his watering zone. Given the unruly speed the four legged wrecking ball hurtles down this path it’s not the ideal environment for delicate beauty. Will it survive. Will it be crushed to a pulp. Who knows.

The new school year is looming. Will we start. Will we home educate. With all the emotions swirling around the house currently it’s not the easiest time to focus on crucial matters. But it’s decision time.

As our health service points out – The school system is failing our son. No additional support is provided in terms of his Aspergers. In terms of Dyslexia it’s the bare minimum. The assumption is that he can’t read, never will read and he will be shown how to use a reading pen for the final exams. Set low exam expectations and anything achieved is a bonus. Let’s be clear that’s not all the teachers. Some do see the potential. Unfortunately his biggest supporter has left this summer. It will be illuminating to see if the school move him up to higher sets this year. His effort, his behaviour, his results clearly highlight the correct answer. A number of teachers have also recommended that course of action. But kids with dyslexia are often just bottom classed.

Yet the evidence suggest that the school system is wrong. The Doctors continually state that it is far too early to give up on the reading. The work they do demonstrate much promise. A kid who has been written off now can read the subtitles which appear on movies. He can read text messages. Today he read a 2 line subtitle and only got one word wrong – minority. He’s achieved that progress without school help.

He needs a tailored approach to development. But to be fair the schools hands are tied by government policy and cutbacks. Tailored education does not happen unless you can afford to go private. Private like the entire Government has enjoyed. Home Education currently allows the parent to tailor the approach. You can develop an approach that best suits the individual. Unfortunately the government is keen to stop this as well.

The major obstacle to home education is having one parent. It’s trying to home educate and trying to bring in sufficient income at the same time. I just can’t make the numbers stack up. I just can’t find enough hours in the day (& night).

The bottom line is that I currently just can’t home educate and balance the books. Home education is the right option but it’s also currently an impractical one. So much frustration. If we still had two parents then it would be doable. It just feels like our son is being penalised again for something outside his control. That makes me angry. Very angry. What’s the line – you wouldn’t like me when I’m angry. Hopefully I don’t turn green. That anger fuels the desire to find a way. Our son deserves that. He deserves at the very least a parent who tries.

So in two weeks our son will return to school. Hopefully to a much improved education. But if it continues to fail then we will just have to find a way.

Posted on by bereavedandbeingasingleparent · 74 Comments

Coordination

Beauty in the sky masked evil intentions. Twenty seconds later a successful bombing run covered my car bonnet. Not so beautiful. The one hand giveth; the other hand taketh away.

Basically I have knackered my body up. Medical advice was to rest the right side for a couple of months. No running. If you play football in the garden – don’t use your right foot to kick. That’s a bit of a problem. During my sporting career the left leg has been a bit of a spectator. It is used for standing on and just getting in the way. Nothing else. So since a toddler I have been completely right footed.

So this garden football season was approached with trepidation. The first attempts confirmed the fears. Absolutely useless. Even the frequent cow audience clearly most unimpressed with my attempted kicks.

But a couple of months later and….

With one hand giveth.

The left leg is like a magicians wand. Better than the right foot ever was. Complete ball control, pinpoint passes, power, curling shots into the top corner of our small net. It just shows that with practice what you can achieve.

But with the other hand taketh.

Now the right side is a little less painful I’ve started using it again and just maybe I could be a natural two footed footballer. Guess what. The right foot is now completely useless. Can’t use it. All my hard work has basically switched me from being completely right footed to completely left footed.

Maybe my brain can only cope with one usable leg.

Son struggles to tie shoe laces. He also can’t use a knife and fork at the same time. He just can’t coordinate two limbs simultaneously. It’s a bit like riding a bike. Son can peddle but not at the same time as steering or braking. If he turns a corner he can’t peddle. He did manage to learn to swim but it doesn’t come naturally. It’s either using his legs or using his arms – not both at the same time.

He has been diagnosed with Dyspraxia which often goes hand in hand with Autism. The bottom line is coordination does not come naturally. We have been doing some exercises to work on this. Jumping on a trampoline and catching at the same time has been our single most fun exercise. We have seen some improvements for example he has developed good catching skills. But things like shoe laces are probably going to be life long issues. We realise this. The main reason we do coordination exercises is to help with his Dyslexia, other improvements are bonuses.

Maybe you just have to accept and work with how your body is setup uniquely for you. Make the best of it. We all can’t be brilliantly coordinated like birds. To fly, aim and poo at the same time. That’s beyond me.

Posted on by bereavedandbeingasingleparent · 57 Comments

Brevity

If I tried to describe these two photographs I suspect I would waffle on for two or three paragraphs. Vibrant colours. summer, natural, wild, rugged, course, memories, wildlife, whistling wind, pastel greens, deep reds, rebirth, life cycle, arcadian , sustainable farming, ruminative, pain of war…..

And when I asked our son his description would be

“Flowers in a field”

You get the picture I waffle and he speaks with brevity.

It was an interesting power struggle at school this week. English was all about informal forms of communication. In particular how to write postcards when on holiday in Spain. Clearly the teacher was looking for postcards in the style of Wordsworth, Keats or Shakespeare. Encouraging the use of words like Majestic, Glorious, Wonderments, Shining, Gleaming, Culturally Enrichments, Golden, Redolent, Effulgent.

Son clearly was in a different narrative time zone.

1st Attempt. Hi. In Barcelona, look it up on the internet, Goodbye

2nd Attempt. Hi. In Pretty Barcelona. It’s got a great football team, Goodbye

3rd Attempt. Hi. Still in Barcelona it’s better than Madrid, Goodbye

Final Attempt. Hi. Barcelona is still in Spain and it’s still better than Madrid. Will phone you on my mobile so not sure why I’m sending a postcard. Goodbye

Luckily the teacher could see the funny side. She could also see the impact of Aspergers and Dyslexia here. To him a stunning deeply evocative blood coloured red flower is in fact a Pentas lanceolata. His bottom. line is let’s just get to the point and less words mean less Dyslexia struggles. Can’t argue with that.

Posted on by bereavedandbeingasingleparent · 46 Comments

Eyes wide open

It’s amazing what you find when you open your eyes.

Another application for additional support. This one was a long shot. Additional funding to provide some specialist support in school for our son. Turned down.

Same line. He already has funding (the maximum available with an Education Health Care Plan) which allows him to take up his place in school. The funding goes into the general support budget which funds the school wide teaching assistant system. Plus he’s doing so well without support.

The fight goes on.

Then speaking with his Doctor. Son is now starting to become too old for many of the health programmes focusing on autism.

The fight goes on.

It feels like the agencies have signed up to support our son while he is in school or college up to the age of 25. The agencies provide virtually no support now. They will continue to provide virtually no support up to the age of 25. Then they can officially provide no support after that….

Ultimately the agencies are just following Government policy and funding decisions. The current government sees austerity and cutbacks as essential for health and education. Yet they are happy to provide funding for tax breaks for the better off and bungs to Northern Ireland Unionists to keep themselves in power.

Nothing is going to change any time soon.

So the fight goes on. But one day the government will change and hopefully we will get one which governs with eyes wide open.

Posted on by bereavedandbeingasingleparent · 53 Comments

The squirrel needs to wait

Today I was planning to write about a squirrel. But at the last minute I’ve changed my mind. Maybe tomorrow…

The Guardian (one of the UK’s better newspapers) ran an article today about autism.

It’s upsetting’: the autistic music fans being shut out of gigs

Its a really interesting read and covers some really important issues facing those on the spectrum. If you have a spare couple of moments I encourage you to read it.

One thing the article is spot on about is that as you get older the support systems fall away and you seem to be left to sort yourself out. It’s so frustrating. You spend years fighting to get your kid diagnosed. If you succeed then you again fight to gain access to services. Hopefully you do get access and then suddenly your kids are getting to an age when the system decides to cut them adrift. It is just wrong.

The article got me thinking about our circumstances. Why does our son enjoy rock concerts yet often struggles in other crowded events. Having talked it though with our son I think we can almost answer that now

  • We only go to venues he knows and feels comfortable with. If we have to go to a new venue we go to see it in the daylight. If you speak really nice to the venue admin they will often accommodate a pre visit to allow you to acquaint yourself with its layout
  • He loves the drama, the noise, the lights. It’s a short fix of sensory overload on the same level as a scary rollercoaster ride. He controls it. If he’s not happy he knows that we can just get up and leave.
  • He loves the way you can wear whatever you want, do whatever you want to your hair, dance, sit, stand, sing, shout, drink, eat – yet no one seems to care. No pointing fingers. No funny looks. No questions. He feels like he can fit in there.
  • It’s so noisy. Too noisy to talk much. He is relaxed as he knows no stranger will talk to him. He still has an element of isolation.
  • He likes the thought that he is doing something which many of the other kids at school don’t do. It’s his hobby.
  • And finally let’s not forget that he just loves listening to Rock Music

Another point the article raised is whether you consider autism as a disability. Because of his diagnosis he is listed in the UK as disabled. Son hates that. He is clear – Autism is his personality not his disability. He does talk about dyslexia being his disability. His invisible disability. One which people see when they want to and ignore when he needs help.

Whether you want to call it a disability or not for me that’s up to personal circumstances. It’s called a spectrum for a reason. Everybody is different. It’s unlikely you will find two specific diagnoses which are the same. The article is right about access. It’s at best patchy and yes some simple changes can open up opportunities for more people on the spectrum. But it is difficult. We went to a Autism friendly hour which our local Toy-r-Us ran a few years ago. It was much more inviting and yet our son did point out that

“If they want to make this completely Autism friendly they should allow us to book slots so we get the shop to ourselves without anybody else here”

One final point. The article talked about earplugs. They are essential but please manufacturers, given my unfortunate incident with one, can we make them edible….

Posted on by bereavedandbeingasingleparent · 69 Comments

Roses

The rose I bought for my partner just before she left us has sprung into life. Wish she was here to see it.

I finally shamed myself into sorting out the garden jungle. Maybe not immaculate but certainly almost passable. Suddenly we have flowers and roses. I had forgotten how many roses we bought before the world changed.

I remember the day we finally got our son’s medical diagnosis signed off. It was a bit of a journey to the Hospital so we stopped off at a garden centre for something to eat. They had an offer on roses and I bought one – think it was the deep red one.

We didn’t know for sure that we would get things signed off. Had so many false dawns. The diagnosis journey had been a nightmare and beyond frustrating. Finally we were lucky and came across a really good Consultant.

He added to our son’s medical record official confirmation of Aspergers, ADHD and DCD. When I asked what the hell DCD was the Consultant smiled and said something like this

“Its the new fad abbreviation and current hip term for Dyspraxia. If it’s OK I’ve used Aspergers rather than Autistic Spectrum. We are supposed to stop using the term Aspergers but not on my watch. I suspect it will always stay as Aspergers on his medical record. If it does change it really won’t have any impact. It’s just Semantics. He is also Dyslexic. In the old days I would have added that to his medical record today but I am not allowed to now. The diagnosis has to come from Education now. Unfortunately that is like getting blood from a stone. It’s a disgrace”

He explained that you can get Dyspraxia on its own but normally it normally coexists with other conditions. Frequently with Aspergers and Dyslexia.

Today he is sometimes listed as having Aspergers and sometimes Autism. Sometimes he has DCD sometimes he has Dyspraxia. At least we have agreement on the wording for ADHD. Whatever the terminology the various strands interlink and makeup who our son is.

Six years later and we are still fighting Education on the Dyslexia diagnosis. That is the one strand which we see as a limiting factor. It holds him back. The good Consultant has retired and our fight goes on.

Posted on by bereavedandbeingasingleparent · 102 Comments

Parent worries

Something has been nagging at me all day. Just can’t get it out of my head. Even the two cows couldn’t shake the feeling.

I picked son up early yesterday from school. We had a doctors appointment before we set off for Manchester Arena. As we walked out of school we passed his class walking in the other direction. Half of the class completely blanked our son even though he said ‘Hi’ a few times to them. But that might have just been me my presence – that’s what I am trying to convince myself.

The bigger worry is that a few of the kids did speak to him. One kid asked if he was going home. When our son said yes the kid replied with a really sarky comment. Then as we walked on I heard a couple of other rather unpleasant comments directed at our son from some of the other kids. These were also greeted with much laughter. I really hope our son never picked up on these. Luckily I think he did miss the meaning.

I realise school is a bear pit some days. But…

I had hoped he was slowly starting to fit in. Maybe I was deluding myself. That thought feels like a dagger to the heart. Yes it could just be just normal playground antics which have been going on for years. I remember as a kid getting the ‘specky four eyes’ comments. Many of the other kids got far worse. But it is a worry. Pointless speaking to school as they say he is fitting in well with a number of friends. The school does seem to count friends as anyone who sits next to our son in a lesson – regardless of whether a teacher has instructed that child to sit next to him or not.

Just going to have to try and make this weekend even more fun for him.

Posted on by bereavedandbeingasingleparent · 54 Comments

Says it all really

Had to complete another report today about our son. It’s amazing given the number of reports we have had to do that they don’t ever seem to get any easier to write. Maybe it’s just me. Anyway today’s report featured some interesting questions

When did you first realise your son or daughter may have autism?

That’s an interesting question as I don’t think we ever had that one eureka moment when we suddenly realised he was on the spectrum. It was more of a drip feed type of realisation. If we are looking for one point then maybe when he was 5 and the first medical professional said that we should start the process of getting an official Aspergers diagnosis. One confusion – when we started the process Aspergers and Autism were listed as separate life long conditions. Now most agencies have dropped the term Aspergers. Son quite likes the idea of having a condition which doesn’t officially exist anymore.

What initial behavioural signs led to your belief that your son or daughter had autism?

Strangely we didn’t have a checklist of symptoms to work from back then. We didn’t have a clue on what we were supposed to look out for. It’s only when you look back that you see the clues. In our case we had several apparently independent clue strands that we should have brought together and bagged under a heading ‘potential Aspergers’.

  • Repeatedly lining toys like cars and animals up in perfectly straight lines
  • Initial slow development of speech
  • But when speech started a sudden extensive vocabulary developed but with underlying problems with pronunciation
  • Flapping hands when excited or laughing
  • Not able to sit still
  • Fixation on specific objects or toys
  • Delayed walking and crawling
  • Excessive clumsiness – that might be my genes….
  • Refusal to wear socks and shorts

But what confused things was that up to the age of 4 he had no problems with making eye contact. Plus he had many many friends. He loved playing in groups. He did have sensory issues relating to his hearing but they were being examined as a specific ear issue. He has never shown any sign of a lack of empathy.

It was only from the age of 5 that his symptoms seemed to heighten and suddenly combined with becoming completely withdrawn from the rest of the class. Rather than being in the thick of play he would stand completely by himself. Additionally his specific ear issues were ruled out and the focus moved to looking at sensory overload. Yes he started to fall behind at school but that was probably the initial impact of dyslexia.

How well do you feel the education service has supported your son or daughter?

They only left 3 lines to answer this question. I asked our son and he said that 3 lines is more than enough to write ‘PANTS‘. So that is exactly what I wrote. I suspect I might go back to this and elaborate a little more but part of me hopes that I stick with the original response. Says it all really.