Almost perfect

Yesterday was one of those almost perfect days. Everything went to plan. An early walk through autumnal parkland. Stunning colours. Early enough that we had the place to ourselves. No need for anxious glances at strangers. A wonderful wide ranging conversation with no distractions.

If you had one of the escaped Jurassic World dinosaurs, how would you disguise it when you took it for a walk?

Why is the Easter Bunny a rabbit and not a mole or lamb or donkey?

Why do footballers dive?

Can you hear explosions in space?

Who would win a battle between a 30ft T-Rex and a 30ft John Cena?

Is there anything in the world that Bear Grylls wouldn’t eat? Could it be Brussel Sprouts?

How would we cope if numbers had not been invented?

Then a day at home. No phone calls. No knocks at the door. No visitors in the neighbours gardens, A day filled with trampolines, playing ball with the dog, Top Trumps, Lego building, water pistol fights and an old ScoobyDoo movie.

A completely relaxed and contented son. No anxiety. No meltdowns. No worries about fitting in. Just happy and laughing.

I said it was almost perfect. Just two improvements.

I just wish his mum was here to join in. And…

It’s a privilege to spend such quality time with my son. I can’t think of anything else I would rather do. But I just wish one day that I can look out of the window and see our son having a similarly wonderful time …. playing regularly with someone his age. Not having to play with his boring old dad. With someone he can call his best friend. That would be the perfect day.

So fast

Once again in the wonderful, wacky world of parenting you get another curveball question.

Dad I know a man can love a man or a woman or be single … are there any other options”.

I’m sure the response to that question was on page 675 of the parenting manual. I wish……

I don’t know how many times I have heard the line, “kids grow up so fast”. That is so true. What happened to the Teletubby or BananaSpilts questions. What happened to the where does Spongebob live. I could answer them.

Then you look at the pets. It only seemed yesterday when we had two lovely, friendly kittens – who just played with a ball of wool all day. Now they rip the curtains off the wall and are top of the food chain in our part of the world.

Or the dog, once so cute and shy. Spending his time snuggling up to cuddly toys. Now currently caked in mud last seen trying to dig his way to Australia.

Yes I dream of days gone by now. Happier times. Simpler times. Safer times. But as much I dream those days are just memories now. So back to today. Where is that parenting manual, where is page 675, and where is that answer to that question.

Sorry sorry sorry – I suspect this post was just a poor excuse to show some cute baby animal photos.

Halloween

We have some odd pets. This time it’s the big boy cat. For some strange reason as soon as we light the candle, the boy cat has to sit next to the pumpkin. If we move the pumpkin, the cat follows. Last year he did the same. Bizarre.

Halloween can be an odd time for our son. Before the world changed he loved the whole Halloween experience. Making the scariest pumpkin possible. But after his mum died it took on a different meaning. In his eyes it became a transition date. The cross over between the time he associates with death and funerals to the period of happiness and life. Over the last two years the period running up to Halloween has brought 3 major deaths – probably 3 out of the 4 closest family members. The period after Halloween brings fireworks, Christmas and anniversary of welcoming the mad dog into the family.

Halloween has now evolved into a mix of reflection for what has gone and for a celebration of happier times. Hence the pumpkin has now moved from the scariest possible to a sort of party boy. This is no bad thing.

Maybe the cat is waiting for the party to start. Waiting for ‘Trumper’ to start the festivities. I didn’t ask my son why he called this years pumpkin, Mr Trumper. I assume it’s because of the trumpet like thing in his mouth – can’t possibly think of anything else that the pumpkin could be named after….

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.

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.

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.

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.