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.

 

 

 

 

 

 

 

 

Richard and Jaco: A Life With Autism

I watched BBC One’s Richard and Jaco: Life With Autism last night.

As a parent, I am able to identify with Welsh actor Richard Mylan’s fears for his son’s future.

As an autistic person, I understand Jaco’s world.

My son will be eight this year but does not have the ability to mask his autism as I have been able to do. Like Jaco, his autism is obvious. He wandered in while I was watching it and saw Jaco wearing his headphones. He said “Look mummy, that little boy looks like me!”

Richard impressed me with his desire to understand his son’s world even though it’s impossible for people to truly understand what they don’t experience themselves. However, Jaco is a lucky little boy to have Richard as a dad and the love he has for his son is a beautiful thing to see.

You get a view of what life can be like with an autistic child like Jaco. He reminds me so much of my own little boy, as in,visibly uncomfortable with environmental stimuli but happy in his world.

In order for him to learn more about Jaco’s future, Richard went to meet various people on the spectrum. First he met Alex Lowry who is a motivational speaker and trainer on autism. An animated man, he is obviously passionate about what he does.

Although Jaco started secondary school and was happy, Richard was interested in finding out about special schools. In one such school he met two teenagers who had been tasked with the job of showing him around. One boy told of the bullying he’d endured in mainstream school culminating in a broken arm and the other told of being ‘kicked out’ of school for being ‘naughty’. Both struggled in mainstream but both spoke highly of the special place where they are understood and most importantly, happy.

Then there was Edward who is severely autistic and in residential care. He is a young man who is happy in his own world and who has a great support network. He, like every other autistic person, does not know what ‘normal’ feels like. All we know is our normal. Ed has an amazing memory and can tell you what day your birthday was on when you were born in a matter of seconds. He is a fascinating person.

Ed’s mother by her own admission has taken a leap of faith in allowing him to live independently but said, “You have to let your kids go don’t you? You have to let them grow up and be independent”.

Bottom line is yes, we do.

The person who struck me the most was the young man who Richard visited in his workplace. This man was literally living his dream of doing admin. Yes, admin! The job that so many people loathe. Yet, he was happier than a pig in muck sorting through all the letters and stuff. What’s more, he is a valued member of the team and according to his boss, contributes to the happy and relaxed atmosphere of the office. What choked me up was when he said to Richard, “If I didn’t have autism, I wouldn’t be as special.”

Richard said “So you see it as a positive thing?”

With eyes that twinkled (and bloody good eye contact thank you very much) the young man replied, “Yes. autism is a very special thing and whoever has it should be proud of it”.

I am proud of who I am and I want my son to be proud of who he is too.

The Boy and I have the same problems but we react very differently. I am an autistic person raising an autistic child and I know how important these next few years will be for him. I can’t sit back and do nothing because he will be a teenager before I know it. I have to prepare my son for a life without me and I have to do it now. I can’t guarantee that his secondary school experience will be as positive as his primary one but I will be watching closely and if he’s unhappy, I will have NO problem in placing him in a special school, especially after seeing how happy those lads were.

My passion comes not only from being his mum but also my years of suffering in mainstream. I know, without a doubt, that I would have been happy in a special school tailored to my needs. With the confusion and crowds removed, I would have thrived instead of having just about survived. However, my time has long since gone. It’s my son’s time now..

I want him to have a relationship. To be able, not only to work, but to be appreciated for his contribution to society. Ultimately, I want him to be able to live independently of us. Don’t get me wrong, I dread the day coming when he no longer needs me but that’s also the day I’m aiming for. It’s what every parent aims for. Sadly, some people are too severely affected for total independence to be an option.

More than anything else in this world, I want him to be happy and to embrace his differences, not hide them as I have done.

We, as parents, do the best we can for our children. We give them the tools they need to survive and they take what they’ve learned out into the world. With autism, the work starts earlier. It has to. Richard Mylan knows that. I know that. Most autism parents will understand that. Another thing that unites us all is the fear of not being here for our special children so we do the very best we can while we are still around.

Thanks to Richard and Jaco for a glimpse into your lives and for helping to spread awareness.

Richard and Jaco: A Life With Autism is on BBC iplayer for one more week. Well worth a watch, folks.

Spectrum Sunday