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.

 

 

 

 

 

 

 

 

Hello, It’s Me..

Everybody remembers the last conversation they had with a loved one before that person died.. It doesn’t matter if the conversation was in person or via the phone. It was those words, spoken or unspoken, that stay with you.

Princes William and Harry were holidaying in Scotland with their father when they last spoke to their mother. Diana was in Paris but she always found time to speak to the two boys who were her life. On the 30th of August she phoned her sons. William and Harry remember this last conversation as being too brief because they were eager to be doing other stuff. They were behaving as young boys do. They were not to know that in a few hours time the mother that they loved so much would be dead. That last phone call haunts them and I understand it because I too am haunted by my last phone call with my mother.

Death.

Death is tricky. Sometimes you get prior notice that he’s coming for a loved one. If death is inevitable, then surely this is the best scenario because nothing is left unsaid? The living can carry on comforted that they got to say goodbye and the dying can let go knowing that there is nothing left to say. That’s the kind of death I want. To leave on my terms. However, Death so often takes our loved ones without warning. There is no opportunity to tell them one last time how much you love them. They are simply – gone.

Death gave no warning about my mother.

The last time I spoke to Mum was the night before she died. I’d been in hospital having a procedure done under general anesthetic and I’d not been home long before she phoned to see how I was. I was woozy from the anesthetic and I just wanted to sleep so I fobbed her off and told her I’d speak to her the following morning. That was the last time I ever spoke to her. How could I know that she would be dead before I woke up the next morning?

Mum hadn’t been ill, except for a “bit of a tummy bug” which she’d mentioned in passing that week. The ‘bug’ turned out to be Bronchial Pneumonia. If she was suffering, nobody knew, because she didn’t say anything. She didn’t ‘do’ illness. Illness was an inconvenience which interfered with hair appointments. She couldn’t be done with it and in the end her stubbornness was her undoing.

What happens in these circumstances is that you replay that conversation over and over in your mind. You don’t remember the other conversations you’ve had with that person. You just remember those last words. You rewrite the script or at least you try to because you feel cheated or guilty or both. You feel like you are the worst person in the world because of that last conversation. You’d give anything to be able to go back in time and do it differently. To this day, I don’t remember if I told her I loved her. Normally, I would have, as I had ended every other phone call, but I was semi-sedated. I most probably did because I ended every conversation the same way. The problem is that it was often like reciting the Lords Prayer, as in, something that you say without actually thinking about it. You know?

My mother was no longer at the end of the phone but that didn’t stop me dialing her number. I needed to hear her voice and I knew where I could find her, for a little while longer, at least..

Hi, it’s me, I’m not here at the moment but leave a message and I’ll get back to you.

I lost count of how many times I rang number Mum’s number to listen to this message. Even though I knew that the phone was ringing out into a house which was no longer a home, it didn’t matter because it was still her voice and it comforted me.

Given the chance, our last conversation would have been very different. Then again, there is a belief that things happen for a reason. What if I was to go back and hear something in my mother’s voice which alerted me to the fact that something was wrong? What then if I was to intervene only for the outcome to be that for the rest of her life she was frail and dependent on others? If you knew my mother you’d understand how much she’d have hated that. As hard as it is to lose someone, if we look hard enough, we will see a blessing in some form. Sometimes we just need to look at things from their perspective instead of our own.

It’s unrealistic to treat every conversation as if it’s the last you will ever have. Life gets in the way and with the best will in the world there are always going to be occasions where we have to cut conversations short. However, no matter how brief a conversation may be, there is always time enough to say the only thing that really matters.

“The news of life is carried via telephone. A baby’s birth, a couple engaged, a tragic car accident on a late night highway – most milestones of the human journey, good or bad, are foreshadowed by the sound of a ringing.” Mitch Albom ~ The First Phone Call From Heaven