Preparing My Autistic Child For Life Without Me

 

I lie awake at nights worrying about many things. Things such as money. Have I put the bins out? Some cow who wronged me in 1985. You know? Life. Plus, a few thoughts that I’m not willing to publicize. *coughs*.

One of my fears is a really BIG one.

It’s the fear that one day I will have to leave my autistic son.

Leave, as in die.

I worry about being dead because I know that I will no longer be able to look out for my son and that puts the shits up me worse than anything in this entire world!

The thing is: I’m middle-aged (*weeps*) and my body is starting to let me down, so, naturally I’m becoming aware of my own mortality. This wouldn’t be as much of a problem if I didn’t have a young son who is dependent on me.

Well, it’s your fault for having him late then!

WHOA THERE! I was 38 when I had my son and lots of women give birth well into their 40s nowadays. Plus, I was relatively fit and healthy. Quite simply. I gave birth and my ovaries threw in the towel and it’s pretty much been downhill ever since..

I have two other wonderful sons, but they are grown up and living their lives. I worry about them, of course I do. Most mothers never stop worrying about their children, right? However, they are independent and stopped needing me a long time ago. My job is done. They can change my big girl nappies when I start soiling myself, right boys?

The Boy is different because he’s autistic and here’s where the problem lies – not because he is autistic – but because I am also autistic and I know how hard it is to live in a world that doesn’t understand you.. While I am alive (and compos mentos mentis) I’m here to fight his corner and I have already had a one person cautioned by the police for intimidating my son.

“There’s no bitch on earth like a mother frightened for her kids.”~ Stephen King

If that makes me a bitch? Fine.

I am preparing The Boy for independence. Just how independent his life will be is unclear as he’s still only eight years old, but I know I must push him and put him into situations that will push his boundaries. If I don’t, his world will be very small. The difference is that, being autistic, I know when to push and when to ‘ease off the gas’, as it were.

I also know when to change things that are no longer working..

One such thing is mainstream education. This last year, it’s become a struggle for The Boy, despite full one to one support and the best efforts of all involved. The problem is with the mainstream system, not the school itself. So he is being transferred from mainstream to a specialist school where he will be with other autistic children. Alongside the usual curriculum, he will be taught essential life skills in a controlled and safe environment. In mainstream this wouldn’t happen as the emphasis is on education, not life skills.

The school has 70 pupils ranging from 8 to 18 with class sizes no bigger than 6. In comparison to his mainstream class of over 30 children! So, this should help to lower his anxiety. It’s a fantastic opportunity for him and one which, thankfully, we didn’t have to fight for as it was the only viable option for him. If he was to remain in mainstream, he would have most certainly failed like I did and I can’t allow that to happen. What kind of parent would I be if I did? Nor could I rule out mainstream from the onset. My experience in mainstream was mega shit, but I didn’t want it to cloud my judgment regarding him. The difference is that The Boy has been happy whereas I wasn’t happy. Ever.

As positive as this is, it’s going to be a big change for all of us.

I will no longer walk him to school. He will use the transport provided by the school. Independence wise, It’s a massive step. If he were to remain in mainstream, there’s no way I could allow him to walk to school alone as some of the older children do because he’s too lost in his inner world to be aware of the dangers around him. He’d also copy the knobends who walk across school crossings when the red man is showing. What kind of example to kids is that?!

I want my son to live a full and happy life. I love him, so I have to start letting him go because the job of a loving mother is to let her children go. Even children with severe learning difficulties need a level of independence from their parents – even if it’s just for a few hours a day.

It would be easy to protect The Boy from the world and wrap him in cotton wool, but I would be failing him as his mother. Being too afraid to leave his own four walls because he’s stricken with anxiety or depression is no life at all and I speak from experience here. I grew up undiagnosed with no support and I’ve struggled EVERY step of the way.

I know I won’t be around for ever, so I must prepare him for that eventuality.

The Boy is limited by his diagnosis, but it was vital in order for him to access the support he needs. However, as things stand today he would be refused jobs simply because he’s autistic. Hopefully attitudes will have changed and companies will understand the value of autistic employees in the workplace by the time he is ready to enter the world of employment.

So, in a few weeks The Boy will start a new chapter in his life. I will stand outside our house as he gets onto the school bus and I will wave him off with faked enthusiasm – not because I don’t care, but because I care too much. I will have to call on ALL my acting skills to suppress my overwhelming emotions. As soon as the bus is out of sight I will probably go inside and drop-kick a cushion to the floor. Then I will collapse on it in a flood of tears..

My boy won’t be five minutes around the corner anymore. I won’t be able to walk past the school and wonder what he’s doing. It freaks me out just writing about it. I know I will struggle in those first few months. I will worry how he’s doing? If he’s happy? If I’ve done the right thing? Then I will remind myself that I am a mother. This is my job. His brothers are living their lives and I owe it to The Boy to give him the tools to be as independent and happy as they are.

The Boy is more than my son. He is a human being in his own right and a beautiful one at that. He shines as special children do. I want him to understand the positives of living inside the rainbow, because autism isn’t the tragedy that people imagine it to be. The tragedy is in the ignorance of people who don’t understand autism.

So, on with the journey.

 

 

 

 

 

 

 

 

Autism: When Awards Can Be A Negative Thing…

There was recently a thread on Twitter started by Claire Ryan who tweeted:

“When is giving a child an award at school, not an award at all?” – along with this excerpt about an autistic boy called Jack.

Jack reported being anxious recently in assembly as school were giving out awards. He would sit thinking ‘don’t pick me’. When he was picked he was very anxious and worried about which way to walk to the front of the hall with all people watching him. Jack was able to describe how this made him feel saying “my bones were dust..my brain was mush..if I could curl up into a ball and fall into a hole 50 feet deep”

A thought provoking tweet which stirred up memories of sitting in the school hall DREADING being given an award because of having to walk up to the front to receive it. You could bet your dinner money that somebody would stick their foot out on route to ramp up the humiliation factor and when you crave invisibility this is the LAST thing that you want.

My infants school had a ‘star’ system where children were awarded gold and silver stars for good work/behaviour. We also had black stars, which are sort of self-explanatory. Nobody wanted one of those. I liked the gold and silver stars because they were aesthetically pleasing. I like shiny stuff. What can I say? Maybe I was a cat in a past life. However, I did NOT like going up to the front of the class to receive one because it meant that everybody would look at me so I deliberately underachieved in my favourite subjects in order to avoid it..

For example, I purposely made myself read slower in order to avoid going to the teacher to get a new book. It seemed like I was below average but in actual fact I was an early self-taught reader who could easily read an entire book in a couple of hours at home. I was also reading books way beyond my age group but as far as the school was concerned, I was slow.

Despite my avoidance strategies, I would sometimes forget myself like when I ran a 100 meter sprint in the school sports. I didn’t realise how fast I could run and to everybody’s surprise, including my own, I won the race.

So, there I was, face down on the grass (dying) when I got an overpowering whiff of Paco Rabanne. This could only mean that my class teacher (and head of sports) was close by and sure enough he was standing over me with his mirrored sunglasses on looking like something out of Top Gun.

Actually, this anecdote story predates Top Gun but you get my drift?

He grinned at me.

Temporarily blinded by the glare off his whitened teeth, I gasped ‘Alright Sir?’

‘Well done young lady!’ *pats me on the back but I’m highly-sensitive so it feels more like a thump*

Then came the kick in the metaphorical flaps.

You’re in the athletics team and practice starts Thursday after school.

Shit. Shit. SHIT!!

Didn’t say shit, obvs.

Instead of feeling euphoric as I imagine most other children would – I felt sick to my stomach.

I didn’t want to be in the school team.

I didn’t even like sports except for watching football and Wimbledon. Plus, I did enough nervous sweating at school without having to work one up in my own time. The problem was that I couldn’t verbalise my feelings. I didn’t understand that I could have said no so I found myself turning up for athletics practice and the next thing I knew I was on a noisy coach bound for the local athletics stadium. Can you imagine how sensory that was? I was that anxious, I forgot how to hand the baton over for the relay race. That occasion was for town. Next came running for my county – by which time I was totally stressed out and visibly so. My mum asked me why I was doing it if it made me so unhappy? So I simply stopped turning up. Needless to say, Sir wasn’t pleased.

I don’t hold a grudge. How can I? He had no idea what was going on inside my body and mind as I wasn’t able to verbalise any of it. I suppose from his point of view it just looked like I was messing him about? He misunderstood me but then being misunderstood has been the story of my life.

Then there was the time when I got 98% in my history mock exam..

Teacher read out our scores. She read everyone’s name out except mine. That’s when I started to feel sick because I figured that I had either done exceptionally shit or exceptionally well.

Either way, it wasn’t good.

She read my name (and score) out and looked pleased for me. What she didn’t understand was that it reminded the class dickheads that I was there and that it had been a few minutes since they’d thrown something at my head. Needless to say, any sense of pride was obliterated by the feeling of wanting to die.

That 50ft hole that Jack described? I know it well.

I underachieved on purpose and the main reason was that achievement equaled anxiety.

The majority of replies that came from #ActuallyAutistic people (including myself) were that receiving awards causes distress and anxiety.

This isn’t to say that autistic people don’t want awards. Most people appreciate recognition when they have worked hard on something. It’s the social aspect of it that is the problem. For me, opening my book and seeing a gold star would have made me happy. It would have been enough. Having to face the entire class took the pleasure away and turned it into something very unpleasant. Just as being picked for the athletics team took away my pleasure of winning. For a child to purposely underachieve has a detrimental effect on their present and their future. No doubt Jack’s teacher meant well but despite their good intentions, the child was distressed.

It’s impossible to get things right every time but when teachers get it wrong they really need to learn from it.

The Boy likes to get rewards at school but he doesn’t like going into assembly to receive them. On a VERY good day he will go and get his award but will have to leave immediately. It’s all about gauging how anxious he is and if he is up for it or not on that particular day.

    • The thing with autism is that normal rules don’t apply.
    • Each child is different with individual needs.
    • Some autistic children are unable to verbalise their feelings.
    • An autistic child might be able do something one day but will struggle with same task the next.

To clarify. Autistic children like to feel a sense of achievement but how the recognition of that achievement is undertaken must be carefully thought out or irreparable damage could be done.

Teachers, take note.

Interview With a Pokemon Master Aged 7 3/4

The Boy granted me an interview in return for some Jaffa cakes. What can I say? He’s cheap. So without further a do.. here it is. Enjoy! 🙂

Question: What do you like to do the most?

Answer: You know! Playing Pokemon Moon! Duh!

Question: What is your favourite food?

Answer:. Chocolate digestives. You know that! *tuts*

Question: Who is your favourite person in ALL the world?

Answer: Mum, you know that too. It’s you. *theatrically rolls eyeballs*

Question: Universe?

Answer: Still you.

Question: What is your favourite TV show?

Answer: Pokemon Sun & Moon series.

Question: What’s your favourite book?

Answer: Diary of a Wimpy Kid Double Down cos at the first page Greg says “Hope you creeps are enjoying yourselves”. It’s really funny. *laughs hysterically*

Question:. What do you want to be when you’re older?

Answer: *throws his hands up in the air* Pokemon Master, of course!

Question: What things don’t you like?

*deep intake of breath* Vegetables cus they make my mind go pop, spotty bread, brown chips, black sausages, nuts, lime, black lollipops and Pokemon killing me.

Question: What do you like to wear?

Answer: Pokemon trainer clothes.

Mummy: Which are?

The Boy: Er, shorts and a top with no sleeves, backpack, cap and LOTS of Pokeballs.

Question: Mummy or Pokemon?

*looks shifty* Pokemon. Sorry Mum.

Question: What’s your favourite colour?

Answer: Yellow. YOU KNOW THAT!!

Question: Favourite animal?

Answer: Chicken? Don’t really have one so I’ll say chicken.

Mummy: What about owls?

The Boy: OOH YESSSS, OWLS! *starts hooting*

Question: What’s your favourite place?

Answer: Home. Ya gotta love home. *American accent*

Question: What is your greatest talent?

Answer: Singing and making Mummy laugh.

Question: What do you wish for?

Answer: To be a professional Pokemon trainer.

Question: What makes you nervous?

The Boy: “Shall I tell you what makes me nervous?”

Me: “Please do”

The Boy: “People cutting my hair”.

Question: What makes you smile?

Answer: When Mummy smiles (and my Pokemon)

Question: What age do you want to be?

Answer: Seven. Because I am seven. Actually, I want to be twelve so I can look cool because most people start their Pokemon journey at 11 years old?

So there you have it, folks. As you can see, there is a Pokemon obsession going on and I intend to repeat the interrogation interview every year to see how his likes and dislikes change. Crafty, huh?

Many thanks to The Boy for being a TOTALLY AWESOME Pokemon Master and most magnificent interviewee.

Creative Commons Image Via Pixabay