Posted on by bereavedandbeingasingleparent · 70 Comments

Probably

One of the most frustrating thing about autism is that nothing seems to be certain. You can say the same about Dyslexia, Dyspraxia and ADHD. The stock reply to questions seems to be “probably”. It feels a bit like that old beer advert “Carlsberg, probably the best lager in the world ”

  • Is Autism hereditary – probably
  • Are environmental impacts associated with Autism – probably
  • Are Autism and Dyspraxia linked – probably
  • Will the behavioural aspects of Aspergers become more pronounced as he gets older – probably
  • Is his Dyslexia linked to his Aspergers – probably
  • Is ADHD linked to Aspergers – probably
  • Will a coach or therapist help with Autism – probably
  • Is a main stream education the best option – probably
  • Could going to a special school help – probably
  • Would home education be more suited – probably
  • Will the loss of his mum have a long term impact on his Aspergers – probably
  • Will he get any specialist bereavement counselling – probably
  • Would educational psychologist be able to provide a tailored educational programme for our son – probably
  • Will an educational psychologist assess our son – probably
  • Could medication help – probably
  • Could medication make it worse – probably
  • Is Aspergers and Sleep Disorders linked – probably
  • Could the use of a reading Scanning pen help with his Dyslexia – probably
  • Could Occupational Therapy help with Dyslexia – probably
  • Could Speech Therapy help with Dyslexia – probably
  • Could the use of a reading scanning pen hinder any potential reading improvements – probably
  • Will the use of coloured lenses help with Dyslexia – probably
  • Have we now ruled out that coloured lenses will not help – probably
  • Will my son get any additional help during his secondary school life – probably
  • Are we trying every available route to try and unlock his full potential- probably

Probably, probably, probably….

Apart from the definite diagnosis everything else seems to have been on a probably basis. That’s frustrating for a parent as all you want to do is try and find the best course of action for your child. It’s more frustrating for the child as he or she tries to come to terms with life and the future.

But one thing is not probably, it’s not maybe, it’s definitely. When your child has had a bad day at school. When the parent is crying inside with the frustration of not being able to take your child’s sadness and anxiety away. When you need a lift.

The pets never let you down. They are our Ghostbusters our Captain America. Guaranteed to save the day and lift the spirits. They don’t need a proton pack or a shield. Just a few cushions will do the job. What a hero. Son and Dad happy again – probably for the rest of the day.

Posted on by bereavedandbeingasingleparent · 41 Comments

Dear 15 year old me

I’ve been tagged by Mom Life With Chiari THANK YOU

This tag was created by Everyday Magic With Jubilee and Mom Life With Chiari. You can click on the highlighted names to check out more inspirational posts from their blogs. 

The 18th October was Dyspraxia Awareness Day. Here are 5 posts/blogs helping raise awareness.

Dear 15 Year Old Me

Two quick heads up over the next few months:

  • You will play cricket match against Ampleforth College a few weeks before the school holidays. When you bat it will get very dark. A ball will come at you like a missile from the big fast bowler, DO NOT try and hook it ….. just get out of the way of the ball. It will hurt…..
  • You will go to a Youth Club party. DO NOT drink the smuggled in Thunderbird Cider. It’s not big and it’s not clever. A bit like the above cricket, your head will hurt for days.

That new science teacher you have just met, he was a happy sole. Just ignore him when he laughed at you for wanting to become an Astronomer, just like Carl Sagan. Tell the teacher to stick his Bunsen Burner up his backside. Save up the money and buy that telescope.

If you can find two Bunsen burners, save one for the Career Advisor. When you say you want to go to University ignore the rubbish he comes out with about no one from around here goes there. Stick to your guns and go to college. If the so called advisor got his way everybody would have been sent to work at either the Chemical Works or British Steel. Just because you live in a poor area and go to a poor school does not stop you from dreaming. *** By the way, the whole British Steel plant gets closed down in a few years.

When you meet that special person. Seize every minute of every day. Enjoy it. You just never know what fate has in store.

Posted on by bereavedandbeingasingleparent · 66 Comments

Night out

A few weeks ago I was contacted about an old school reunion. Surely this was an excuse for a night out. My first night out since the world changed over two years ago. The old me would have been really excited about seeing some old friends and having a fun night out. How times change.

This potential night out sent shivers down my spine and I agonised over it.

  • Where am I going to find a child sitter. A child sitter my son is comfortable with. A child sitter with experience in autism. I couldn’t come up with one viable option. After our son was born we hardly ever went out as a couple. If we did go out for a night, it was as a family. But as the autism became more prevalent these family nights out stopped. But at least one of us could stay with our son if the other partner wanted to go out – it worked well.
  • Because the venue was over an hours drive away, even a relatively short stay at reunion would have meant an extended period of childminding.
  • How would I react having my first evening/night away from our son in over two years.
  • Would I be able to cope at the reunion. It feels such a long time since I’ve done anything socially like this.

In the end I sent my apologies. I’m sure that the correct approach would have been to go. Yes you can list a number of valid reasons why I should have gone. But was I disappointed, not in the slightest. For the night of the reunion we ordered a pizza delivery and watched the two Paddington Bear movies. It was another lovely night. This is my world until our son is ready to fly the nest. Yes it does have its downsides but it is the biggest privilege I could possibly have. I count my blessings for this opportunity.

Posted on by bereavedandbeingasingleparent · 39 Comments

Model Parent

Sometimes I feel like the worst parent in the world (I’m sure most parents feel the same at some stage). I read some of the tremendously inspiring parenting blogs and then compare it to my chaotic approach. This morning I was reading a blog about Dyspraxia when I realised that I had forgot to put this down on my son’s school health form. So I dug out a copy of the form and confirmed the omission but also noted that I had spelt Aspergers wrong as well. I phoned the school to ask for a new form and they informed me that I had used the wrong form anyway. So they would send out a new form. While they were on the phone they reminded me that I had still not returned another two important forms.

So that went well.

Sometimes life sends you a curve ball that makes parenting an even more difficult job. Seemingly well beyond my modest ability levels.

I’ve been agonising over when and how to have THAT ‘Santa’ conversation with my son. Because of his Aspergers it is something which has to be managed really carefully. Trying to find the right words, trying to find coping strategies for emotional reaction. I decided that the best time was in the upcoming school holiday. I had decided on giving our son a special Christmas project to work on. My idea is that he can plan our Christmas programme. What we do, what we eat, where we go, the decorations. It will be his Christmas.

Seemed like a plan. Unusually for me, a plan that had been meticulously thought out. So now the curve ball. Off the bus comes and obviously distraught son. I hadn’t planned on the R.E. Teacher announcing some choice Christmas facts during her lesson. I had not planned on the said Teacher obviously handling this really delicate subject for some kids with the tact of a rampaging wolverine.

So we quickly headed off to one of his favourite places. With his favourite pet dog. Went to see his favourite wooden sculpture. We drunk some of his favourite drink. We then talked through some stuff and agreed that it was his Christmas his year. His mood has lifted somewhat. His Aspergers planning is starting to swing into action. I think he’s going to be ok.

I am probably not the only parent that is rubbish at planning and organising stuff. But maybe, just maybe like most parents, we find a way of making parenting work.

Posted on by bereavedandbeingasingleparent · 22 Comments

What you see

I went first scanning the world around me for 30 seconds. So what could my mighty mind recall. With my scatter gun memory approach, it was over in a few seconds. I remembered some birds flying overhead, a few clouds, someone cutting the lawn, bit of a breeze, plane flying overhead, a car, a number of cows, think I saw a sheep and a dog barking (not ours). I was quite impressed with myself until my son’s turn. I knew I had lost the challenge when my son’s first words were “17 cows”. The list he came up with was something like:

  • 17 cows,
  • 6 sheep,
  • 7 birds in flight (4 crows, 2 starlings and a bird of prey possibly a Buzzard),
  • 1 bird whistling in that hedge,
  • 2 more birds chirping in the other hedge,
  • breeze
  • 3 aeroplanes, looking at the cloud trails one of the planes has four engines,
  • 1 lawnmowers in the distance,
  • About 15 white clouds,
  • 2 Wasps or Bees buzzing behind us,
  • A couple walking a white dog in the distance near the far gate, which they didn’t close. The dog is barking,
  • Someone has fire on as I can smell the smoke, given the wind direction it might be the farm,
  • 2 cars and probably from the sound of it a bus driving up the road,
  • Next door has the television on, it’s loud
  • plus ‘you tried to put me off by pumping’ – (sorry thought I’d got away with that one).

I was expecting my son to win this observation game. I remember watching a programme by TV nature presenter Chris Packham in which he was talking about his Aspergers. In the programme he demonstrated how much he sensed and detected from his surroundings. It was just beyond my comprehension. Part of me was hoping that our little game would demonstrate to our son some of the positive elements of Aspergers. What it did demonstrate was how much sensory information his brain was having to deal with. When I looked only a few minutes later so much had changed. He’s processing all this sensory information all the time. I get why he likes listening to rock music, it helps block out some of the sensory distractions. I’m not sure what his Headteacher’s would say if I recommended playing Motörhead over the school p.a. system. Anyway as we walked towards the house our son smiled and said “ah the sweet smell of a barbecue or is it the cakes you put in the oven”. What would a Sunday be without burnt to a crisp fairy cakes. Just grand.

Posted on by bereavedandbeingasingleparent · 87 Comments

Not a good word

“Dad what’s an idiotic cretin“.

That’s another question I wasn’t expecting. A tad worried at what might have happened at school or on the web, I asked why.

“I was watching something about the U.K. leaving Europe and that was how one politician described another politician.”

That explains things then. It neatly sums up the level of debate which is supposedly driving our country forward at the moment. Anyway I tried to explain that it was not a good word to use and those so called politicians should know better.

Fast forward a few hours and we sit down to watch some episodes of Spongebob. It’s funny how often random things combine neatly together. The second episode featured Plankton saying to Spongebob

“I thought I’d told you to go away, CRETIN“.

My son obviously now thinks “cretin” is an acceptable word to use as it was used in a children’s cartoon. And I now have the perfect solution to our countries current crisis, let’s put another cretin in charge. Spongebob could be our saviour. The worry is he couldn’t do any worse.

Posted on by bereavedandbeingasingleparent · 29 Comments

Man up man down

I’ve wittered on about a number of subjects but not yet about books. Well let’s change that.

Over the years I’ve lived with depression. I’ve never had suicidal thoughts however after my partner died I did go to some dark places. I can fully understand the path those dark places can lead you down. Crucially for me there is our son – I have to be there for him over the next few years.

In the U.K. depression has been a bit of a taboo subject. You weren’t supposed to talk about it. You were expected to suffer in silence and just get on with it. Even suicide was reported as if it was some form of crime. A few years back I remember telling a friend that I was depressed, his response was “stop being a wimp and pull yourself together”. Thankfully things are starting to change. It’s now becoming socially ok to talk about depression.

Paul McGregor is one of the leading mental health campaigners in the U.K. He has now released a book based around his fight with depression and the impact his dads suicide had upon him. I found the book really thought provoking with many elements of the book striking a chord with me. Although it was an emotionally difficult read, I found the book completely inspirational.

Posted on by bereavedandbeingasingleparent · 35 Comments

Words of Wisdom

“You’re only given a spark of madness. You mustn’t lose it” – Robin Williams

“For all autistic people it mustn’t any longer be about what we can’t do, it’s got to be about what we can do” – Chris Packham

“You’re an interesting species. An interesting mix. You’re capable of such beautiful dreams, and such horrible nightmares. You feel so lost, so cut off, so alone, only you’re not. See, in all our searching, the only thing we’ve found that makes the emptiness bearable, is each other” – Carl Sagan

“When we meet real tragedy in life, we can react in two ways – either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength” – Dalai Lama

“It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village” – Elaine Hall

“It’s so much darker when a light goes out than it would have been if it had never shone” – John Steinbeck

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim“- Vicki Harrison

“You are allowed to feel messed up and inside out. It doesn’t mean you’re defective – it just means you’re human.” – David Mitchell

“We’re out of our comfort zones with depression. I certainly was and whenever I have bad days now I speak to someone to get it off my chest. I have no shame telling that and that’s why I’m here today” – Ricky Hatton

“Once you choose hope, anything is possible.“ – Christopher Reeve

“I didn’t succeed despite my dyslexia, but because of it. It wasn’t my deficit, but my advantage. Although there are neurological trade-offs that require that I work creatively/smarter in reading, writing and speaking. I would never wish to be any other way than my awesome self” – Scott Sonnon (World Champion in Martial Arts)

“There is a time to live, a time to die, a time to laugh, and at no time are the three of them very far apart” – Spike Milligan

“Life is too short to do the things you don’t love doing” – Bruce Dickinson

“When you change the way you look at things, the things you look at change” – Wayne Dyer

“A dog is the only thing on earth that loves you more than he loves himself.” – Josh Billings

“Cats are smarter than dogs. You can’t get eight cats to pull a sled through snow” – Jeff Valdez

“The inner machinations of my mind are an enigma” – Patrick from Spongebob

“Bums to big” – Our son on why the Dodo couldn’t fly. Probably explains why I can’t fly as well.

Posted on by bereavedandbeingasingleparent · 10 Comments

Planet of the Apes

The weather today was wonderful. Warm and still. Countryside filled with fantastic deep colours. Even the dog was almost behaving himself. It should have been a walk to saviour.

Yet a my head was blocking the surroundings out, to busy lost in worries:

– son starting new school, have I got everything ready, I must have forgotten something from the school list, will his uniform fit, will he make friends, will he get bullied, have I got the wrong start day…..

– we haven’t had a holiday in 2 years, I must be a bad parent….

– what happens to my son if I become ill…..

– is it time to have that chat about Santa Claus…..

– am I leaving it too long in getting round to spreading my partners ashes…

– are we spending too much money….. am I working enough hours……

– the lawnmowers broken, can we afford to buy a new one this month….

– did I turn the oven off …. did I lock the front door……

And on and on and on it went. Virtually the whole beautiful walk blocked out by my worries. Then the realisation that I had not spoken to my son in over an hour. Luckily he seemed really happy, walking the dog.

“Are you ok, son?”

“Fine dad”

“What are you thinking about

“What might have happened if the Planet of the Apes was based on a different animal. Currently trying to work out if Planet of the Pugs would make more money than Planet of the Budgies”

……………………………………….

So hopefully I’ve learnt my lesson. Try to live the moment rather than worry about things. There is probably a time and a place for these worries, but it’s not on a beautiful walk.

I missed out on todays Planet of the Apes debate but I’m certainly not planning on missing out on next weeks now booked debate about alternatives to Pirates of the Caribbean.

Posted on by bereavedandbeingasingleparent · 8 Comments

Progress

The hustle and bustle of school summer holidays is something which does not sit well with my son. Aspergers and crowds is often not a good mix. Added to this was the fact that since his mum died, the sight of happy families would often greatly upset him. Reminders of what he had lost.

But now we have some progress. Now when he sees families it often reminds him of some wonderful memories. Memories he loves to share. Good times which make him happy.

Today was almost a perfect setup for him during a walk with the mad dog. Occasionally we came across families playing in the park. Today these encounters prompted memories of holidays we shared together with his mum. All precious and warming memories. No tears just smiles.

But today it often felt like we had the park to ourselves, no hustle and bustle, just the sound of birds. Today no anxious looks over his shoulder at the swirling crowds around him. A boy at ease with his surroundings.

Days like today feel like progress days. Often it seems like you get good days and bad weeks. Dark periods seem to go on forever. But when you do get a good day it reinforces the importance of trying to keep moving forward.