Posted on by bereavedandbeingasingleparent · 88 Comments

The experts

We had an appointment today. Sat in the waiting room with three other families. All three with kids younger than our son. They were happily talking, running around and playing with the provided games. Son sat in the corner basically trying to hide behind a potted plant. This continued up to and during the appointment. Back in the car driving home he was back to smiling and talking about a multitude of subjects.

Since Aspergers became our byword this type of behaviour is common. I remember a Clinical Psychologist saying that it’s likely to be replicated throughout his life. Technically Aspergers is called a life long condition.

Son puts it so much better.

It’s just me. Its who I am.

Yet I had read a blog the other day which basically said Aspergers could be programmed out of people through repetition. It was an illness and as such could be eradicated. The cure…..

One of the subjects we talked about was. How does a Cow see itself. Not as a cow as that is our interpretation. It’s a great question to play with as we will never know the answer. As a result son couldn’t disprove my thesis that a cow sees itself as an actor in a Madagascar movie. Son informed me that about 63% of the worlds cattle population are from India, Brazil and China. He also allowed my random fact that the nosiest cows are from Switzerland – those beautiful cow bells.

Cows have 22000 genes with about 80% of them shared with humans.

I remember reading that cows like to stand either facing towards or away from the magnetic poles.

Apparently in Cow News – a cow walked through a classroom in India today.

Anyway after much deliberation son answered the cow question.

Should really ask a cow about that.

But that’s the secret. Too many humans make lots of assumptions and then answer questions they are not best qualified to answer. So when we talk about Aspergers maybe we should first ask the experts about it. Not the experts but the real EXPERTS. The kids and the adults with Aspergers.

Posted on by bereavedandbeingasingleparent · 85 Comments

Lonely

Two days ago it was 34C and cloudless. Today we are back to jumpers, rain and mist. Again the weather matches my mood.

Today I am missing my partner more than usual. Maybe it’s because we are starting to approach the fateful anniversary. Maybe it’s the weather. Maybe it’s 2 hours sleep last night. One thing it is most definitely not to do with is our son. As ever he is the shining light. The only thing that keeps me going.

So as he is watching ScoobyDoo and the Witch’s Ghost my mind is wandering. Not only am I missing her so much there is something else. I am still enjoying parenting today but I’m not enjoying being a single parent today. Does that make sense?

  • Nobody is there to tell you that are doing some parenting thing right or wrong.
  • Nobody is there to give you a hug.
  • Nobody is there to give you that knowing smile.
  • After son goes to bed nobody to snuggle up with to watch a movie.
  • Nobody is there to share a quiet moment with.
  • Nobody is there is ever to make you a cup of coffee.
  • Nobody to cover while you pop out for that bottle of milk or a bag of flour which you have just run out of.
  • Nobody to calm me down when I am about to throttle the hoover as the belt snaps again.
  • No more holding hands.
  • Nobody to share that special moment together when our son does something magical.

Don’t get me wrong parenting is still the most rewarding thing I will ever do. Maybe I need to write a post about the upside. It is the best gig in the world. Just somedays it’s a bit tougher than usual and certainly more lonely than I envisioned all those years ago.

Posted on by bereavedandbeingasingleparent · 90 Comments

Patience needed

Again a bit of a shout out to the Yorkshire Wildlife. News of my oh so slow mobile phone camera focusing system has got out. Another kindly soul hung upside down long enough for a focus of sorts. Thank you.

As son was happily perched in front of the TV watching a Pokemon movie I took the opportunity to take the pup for a walk. Hence the photo above. It was a short walk, no more than 15 minutes. When I got back home son was not there. Clearly he had gone looking for me. Before I could get out of the door he returned. He has gone looking for me in his bare feet. That indicates the level of the panic attack.

That’s why the school holidays will be based around me and my shadow – or better the other way round. He lets me into his world and that is the coolest thing ever. Now brief solitary dog walks are out then its unlikely we will be separated over the next 6 weeks. I suspect many parents will experience a similar feeling.

Opinions differ on the future. One of his Paediatricians said

“He will eventually grow out of this clinginess. In a few years you will have to face getting your life back on track”

However one of the best clinician I have come across (unusually a caring expert in autism) argued

“He may learn to have a level of independence. However I think the balance of probability is not heading in that direction currently. You should prepare for a life long parenting commitment.” – that was when we had two Parents and two Grannies (now it’s just me)

For me this raises 3 fundamental issues

  • What’s the Plan B if something or when something does happen to me. It’s not a straight forward problem as my brother and sisters are at least 10 years older than me. Practical options are a tad limited.
  • As he gets older the minimal support he gets from the state will disappear. Sadly that’s just how it is. It is not viewed as a priority. Let’s face it – clearly it’s not as important as something like funding tax breaks for the rich. REALLY. As a society we should be better than this.
  • Everyone is different and I have come across examples of wonderful individuals on the spectrum who are successfully keeping down full time jobs. But the evidence suggests that a fundamental problem all too frequently exists. Many on the spectrum struggle to keep down full time jobs. I have seen stats which indicate the Autism unemployment rate can be as high as 85%. Some will be fully dependent on full time help for life. Those parents are unbelievable heroes. I am in complete awe of you and the daily sacrifices you make. I have read a number of Aspergers stories recently of people who have developed levels of independence and who have tried to work. The message was hauntingly similar. Countless jobs started well but they started to struggle with time keeping, office politics, social interactions and multitasking. Office small talk was alien to them and they became isolated. Eventually they became ostracised or the butt of colleague jokes. Employers seemed oblivious to the issues surrounding autism in the workplace. Anxiety and Depression kicked in, sick days started then the job was gone. Cast adrift again in the alien world without any support.

Every person is different. Things can work out well but they can clearly also go badly. I need to get my head around this and start preparations now. This could be a lifetime project. Which brings me to one last thought. Last week someone said to me

“Your still relatively young. It’s such a waste. You just need to get through the next few years then he will have his own life and you can start living yours again.”

Currently that outcome is not part of my plans. Years ago I had personal dreams but now they are gone. They went with my partner. I’m here now to do a wonderful rewarding job and I will give that my best shot. In the end that’s what any decent parent would do.

  • Posted on by bereavedandbeingasingleparent · 67 Comments

    Wow he’s got a funny shirt on

    Dad are you going out in that T-shirt. I wouldn’t be seen in that.

    The look the cow gave me I think indicated a similar interest in my attire. What is so wrong with a bright yellow T-shirt which has a photo of a reasonably well known TV personality on the front.

    Don’t see a problem myself…..

    On the walk we bumped into a family coming the other way. I had a quick chat with them but quickly realised son had pulled his hood over his head and was basically hiding behind a bush. So we headed off promptly. Social interaction just doesn’t come easily for him. Unplanned encounters just freak him out especially if they involve other kids. He hates the thought that people are looking at him. He hates having to make eye contact. He is never sure how close he should stand. He gets anxious when he has to stand still. He is convinced that only a few people get what he’s talking about.

    I could tell this encounter had bothered him. Possibly he was a little embarrassed. He has spoken in the past about being a little ashamed that he could not handle chance meetings more confidently. All you can do is reassure him and tell him to be just himself. Being himself is just perfect. Counselling was having a bit of a positive impact on his confidence but that has dried up now. We work on breathing and anxiety control techniques. Occasionally I try to get him into carefully controlled new situations. The Holy Grail would be a club in one of his interests areas.

    Hopefully one day he will realise that most of us are like this somedays. It’s called being human. But it’s now time to get him smiling.

    “I hadn’t realised my shirt was so embarrassing that you didn’t want to be seen with me. Clearly it’s not a cool look. Good job they didn’t see my Peppa Pig pants”

    Tell me you haven’t.

    I think my smile gave the fib away and he started laughing.

    Do you think they noticed anything unusual about me.

    No too busy thinking what a pillock your Dad looked like. Shall we go home and see if we can find a couple of cider ice lollies.

    I suspect we will be on lockdown at home for a while now. That’s cool. It’s what he probably needs at the moment. And anyway who needs the outside world. We have a trampoline, we have a football goal, we have a DVD player, we have a Peppa Pig DVD (maybe scrap that one), we have jelly and we have our imaginations. What more do we need.

    Posted on by bereavedandbeingasingleparent · 53 Comments

    Garibaldi

    When I was a kid I loved a Garibaldi biscuit. Not had one in years. Sorry rubbish connection but beyond tired at present.

    It’s been one of those days. Constant motion. Housework, Pre School Routine, Work, Dinner, Work. Lots of action, no sitting down yet achieving absolutely nothing. Even the dog walk up the hill lane just seemed to take longer today. The days culmination was forgetting about tomorrow’s school uniform. So panic washing cycle started at 11.30pm. Waiting for it to finish now. Then we are going to crank up the Tumble Dryer to its highest setting – equivalent to splitting the atom. Hoping I will get a semi dry uniform to iron by 2am. It’s been one of those days…..

    Anyway back to my rubbish connection.

    When we went to see Kiss the support act was a performance painter called David Garibaldi. Have to say he is definitely gifted. Frankly it’s just showing off just a bit too much when you can paint Elton John brilliantly, before a Rocket Man finishes and doing the painting upside down. But seriously the guy is a genius.

    “Dad he could do my bedroom like a modern Sistine Chapel during one Spongebob episode. It’s taken you a year and it’s still resembles a building site.”

    I bet Garibaldi isn’t trying to paint a masterpiece at 1am while he waits for what’s left of a school uniform to dry. But maybe the secret is to take the painters approach to time management. Pick a song then try to finish the painting job before it finishes. I wonder if that could work with housework and washing.

    Posted on by bereavedandbeingasingleparent · 75 Comments

    Ricky

    Meet Ricky the newest member of the gang. He’s made an appearance before when he started burying his nuts in the lawn over winter. But now he has started coming for his lunch. Happily feasting next to the birds. He (or she) will be a welcome friendly face going forward.

    We are just over a week from the start of the summer holidays. Six weeks of immersing myself in our son’s world. It truly is a privilege. A wonderful mind trip. Happy parent.

    I bumped into a parent from his current school. They have the holiday mapped out. Immediately they break up they are going to a music festival for the first weekend. Then the kid is going on a football course for the first week. Then they fly out for a two week beach holiday in a popular Spanish resort. They come back and then the kid is off camping with the scouts. A couple of trips to fun parks and family barbecues are then followed by a family week in Paris Disney.

    Asperger/Autism summer holidays can be very different to this. Ours is. For a start we are limited by finances. Our summer holidays are long periods of house lockdowns briefly punctuated with carefully selected trips to places without crowds. This means early day trips to places like Zoos – trying to cram as much in as soon the venue opens and leaving as soon as the crowds start to build. For his favourite zoo that means arriving at 9am and probably leaving around 10.30am. Trips to the cinema will be to the 8.30am screenings. Locations will be carefully planned so that he feels comfortable there. Walks will be in very remote and largely unvisited areas.

    A trip to Switzerland would have been an option (he is comfortable there and the journey is familiar having done it a few times) but we just can’t afford it. Plus he is more comfortable going during quieter periods – April/October. And we haven’t tried it since his mum left us – will it ever feel the same.

    So our summer holidays will be quiet and largely cut off from the outside world. That would worry me in the past. The real danger of becoming increasingly introverted over those weeks and losing any social confidence which I had struggled to build up. This year it doesn’t really bother me. Yes I might become more introverted but its not as if I have a full social diary. Introversion and isolation is the new me. I can focus on our son and see what adventures we can weave – I’m sure Ricky will play some part as well.

    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 · 101 Comments

    Yoga is not good for you

    I thought yoga was supposed to be relaxing. My new Yoga dvd arrived yesterday . So I eagerly tried to open it so I could see my stress levels tumble off me. Unfortunately it had been cellophane wrapped by Superman. Eventually I managed to slice open the wrapping and my thumb with the kitchen knife. Good start to my yoga career.

    After applying plaster to cut thumb put yoga dvd into player and get an error message. Invalid dvd region – note to self seemingly very heavily discounted US disks are discounted for a reason here …. So onto the internet to find the code to unlock all regions on the player. Sods Law dictates that of the 100 models listed for our well known brand of Japanese Player ours is the one that is not listed. After randomly trying codes for many minutes I stumble across one that works.

    The first solid piece of advice provided was to select a cd of some of your favourite music which you can play while following the routine. Do you think Motörhead would work….

    So I started… 10 seconds later the phone rings. My sister.

    10 minutes later we un pause the dvd and off we go again…. 1 minute later the doorbell rings. Do I want to buy some freshly caught Whitby Cod. Every few months the same bloke comes round trying to sell his so called fresh fish. Given we are 40 miles from Whitby I suspect the fish was more likely caught from the local Quick-E-Mart.

    Few minutes later settled on my back in the bridge pose. Maybe pulse starting to fall…. unprovoked dog licking attack to the face …. dog banished to another room, face feeling distinctly tainted.

    2 minutes later we again un pause the dvd…. and 2 minutes later the phone rings and keeps ringing. Another sister.

    15 minutes later we try again…. we just settle into the cat pose when the doorbell rings again. I try to ignore it but then there is a knock at the window. Look up to see the Postman waving. After accepting a parcel for next door I officially give up more stressed than I started.

    That is not what the DVD promised.

    That is not what Yoga promised.

    Posted on by bereavedandbeingasingleparent · 87 Comments

    Soulless

    That pesky grief monster sneaking up on innocent folks again. Should be a law about that. On sorry I forgot our Government ceased being a viable legislative body two years ago. Still we can look forward to Johnson or Hunt now. OMG. One is a self serving buffoon who dresses up outrageous racist comments as free direct speech. A man whose middle name should be dishonesty. The other is a man who forgot which country his wife was born in (supposed to be our Foreign Secretary) and who wilfully wrecked our NHS.

    So no help coming from the Government any time soon then.

    I was having a 50 minute walk – can’t believe how much I miss my runs. Tired but been worse. Then out from a side path a couple emerged. Holding hands and clearly so in love. Suddenly waves of grief and remorse smash me into the ground.

    That was us a few years ago…

    We should be still holding hands today…

    Those days have gone…

    Suddenly I feel very tired, very old and very broken.

    It wasn’t supposed to turn out like this.

    An hour later I’m back at work but basically I’m going through the motions. My heart is trapped in a different year. It’s unlikely that it will be released. I feel soulless, yes that’s the word, SOULLESS. Just an empty shell. Just focus on that one job – give our son the best childhood possible. That gives me a purpose. Something to keep me going.

    Posted on by bereavedandbeingasingleparent · 91 Comments

    Grounded

    Getting older is great for your body. I wish I could have my body from when I was 30. Hang on it was buggered then, just dislocated my shoulder playing football. I wish I had my body from when I was 25. Hang on I had just dented my rib cage playing cricket. I wish I had my body from when I was 20. Hang on I had just cracked my skull open playing rugby. I wish I had Thor’s body from before the Endgame.

    Playing contact sport is basically bad for you.

    Since the world changed I have focused on our son. But that is not completely sustainable. You do need to find time for yourself. If only to help manage stress levels. My anchor has been fitness and home workouts. Thirty minutes a day as a minimum. It worked until I realised I needed to stop myself becoming completely housebound. Couldn’t afford a gym so it was running. Again it worked well. But then the buggered body caught up with me again. So until a physiotherapist can have a look at me I am banned from running and weightlifting.

    So the two things which have kept me sane over the last couple of years have suddenly become unavailable. Hopefully temporarily but you never know.

    So I need to find something – a new anchor. But what? Climbing but that is far too risky and we are short of mountains round here. Cycling and walking would be good options but time constraints limit their appeal. Maybe not a sport then. Shockingly it might have to be a hobby.

    • Yoga – good for stress but I have the balance of a drunk three legged mountain goat
    • Dedicate time for reading – that could work, keep moaning about not reading enough
    • Write a book – possibly a cook or baking book….
    • Astronomy – time at night is a premium plus this is Yorkshire otherwise known as Cloudsville.
    • Birdwatching – another possible option and might meet others (even if they have feathers and a beak)
    • Learn another language – the nearest classes are many miles away and learning languages other than English will probably be outlawed after Brexit
    • Photography – only available camera is on my battered many years old iPhone
    • Gardening – who am I kidding, I am a plant mass murderer
    • Gaming – certainly not stress relieving
    • Painting – even messed up a paint by numbers Mona Lisa
    • Learn to play an instrument – would find a use for that keyboard I bought our son as a present, the one he asked for which apparently was supposed to be a gaming keyboard
    • Knitting – my knitting skills are only matched by my baking skills
    • Tree Shaping – we only have two small trees
    • Extreme Ironing – far too dangerous for me

    So many options to ponder over. I will find a hobby. I have to if I’m going to pull this single parenting gig off. Asked our son and he helpfully suggested

    “Does sleeping count as a hobby”