Four things my severely autistic son has taught me


Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge but I would learn and gain so much.

 
Then one day my baby was diagnosed with severe autism.

 
Everything I had ever known about parenting suddenly changed.

 
I went from being the teacher to becoming the student and despite my son having no ability to speak he has taught me more than any speaker, any book or any course every could.

 
Here are five things my severely autistic son has taught me about life:

 
1. If you enjoy something, repeat it! 
All too often in life we are told to ‘move on’ or ‘grow up’ or ‘you are too young for that!’ My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on you tube over and over. He presses the same button of the same toy repeatedly and still laughs.

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Isaac has taught me that if something fills your heart with joy never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life over and over again.

 

 

2. Stop worrying about other people!
Isaac has no awareness of others. He is not afraid to get on a roundabout even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or wether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd. Instead he is blissfully content being who he is, exactly how he wants to be.

 

I want to be more like that.

 

Life is not about doing what everyone else is or pleasing others. He is different, and happy to be so, and there is a lesson there for all of us.

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3. There is other ways to communicate without using words.
I talk far too much. Most of us do. Isaac can not talk at all so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, he screams if he is unhappy or scared, he takes my hand to lead me, he finds photographs of things he wants.

 

To most his communication is too basic, too rudimentary, to learn anything from. They are wrong. Speech is not a ‘higher’ level of communication but rather a way to communicate that is actually too easily misunderstood. We can say we are happy yet our body language says otherwise. We can say we love when we actually don’t. My son simply shows me in beautiful and simple ways. They say actions speak louder than words and perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more?

 
4. Don’t worry about the future, just enjoy today!
Isaac has no concept of ‘future’. He lives in the here and now and at 8 is just about coping with the basic idea of ‘first and then’. He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism.

 

He lives in the moment.

 

He eats food and enjoys every item with no consideration for cost or sell by dates. He is as content to eat an out of shape vegetable from a low cost supermarket as he is eating out in an expensive restaurant. As long as he gets to eat he does not care! He never stresses about money or where it will come from neither does he desire anything of any real value. He will play with a coat hanger flapping it for hours without any idea that most would view it as trash. While we may not be quite as able to ‘live for the moment’ as he is we certainly could learn from his care free lifestyle and worry much more about today than the future. First today, then tomorrow could be a motto for us all.

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Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same you tube clip that he laughed at yesterday, and the day before, and the day before that too! He drags me to the cupboard for food and is neither brand aware nor cost aware.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him.

 

He brings me delight every day. He has so much to teach us.

 

He may be severely autistic and non verbal but the world is a better place for having him in it. 

 
People tell me he needs to be more like us. I disagree. We need to be much more like him. 

 

IMG_1466A version of this blog first appeared here

I put him to bed some nights and cry


Loving my son is easy, living with him is not.
Some would say he is controlling, a bully, self centred and aggressive. These would all be correct.
He is also frustrated, anxious, stressed and agitated.
No anger course, or therapy or counselling will help him.
He is 8 and can not speak. He is still in nappies. He has no sense of danger. He can scream for hours, smear, attack and demolish all in one day.
Yet he can laugh a deep laugh that is so contagious he makes everyone smile. He can flap and find utter delight in lift doors opening for hours.
He is the apple of my eye and the delight of my heart but some nights I put him to bed and cry. 
I cry for the life he is missing out on: The lack of friends, the inability to read and write, the fact I have no idea when or if he will ever be toilet trained. I cry because he is misunderstood and judged so much. I cry because he can not tell me anything like how he is feeling or what he likes. I cry because he is so vulnerable and that scares me. I cry through exhaustion having to constantly guess what he wants and why he is so upset. I cry through years of sleep deprivation, lack of support and the stress that something as simple as an open door makes him throw himself down the stairs in distress.
I put him to bed and cry because I do not want him to see my tears. I never want him to feel he disappoints me. I never want him to feel rejected or unloved. 
But I need to let the tears out. Pretending this is ok is not helping anyone.
My son has severe autism and it is very hard. My son has neurofibromatosis type 1 and that scares me. My son is vision impaired and that worries me.
His list of diagnosis and difficulties is comprehensive. He requires 24 hour care and relies on me for everything. He will need care all his life and his condition is progressive and unpredictable.
He brings me great joy but caring for him exhausts me.
Loving him is easy, living with him is not.
I love him more than words can say but I put him to bed tonight and cried.

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Why I cried when my child had a meltdown on a busy train

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Isaac was so excited. He had watched so many trains come and go from the busy platform while he flapped, clapped and laughed at the doors opening and closing and the whistle blow as each train pulled away. He loves trains and even more so when he gets to ride on them.

Our train was due next so I held his hand and gathered up our bags. I knelt down beside him and told him we needed coach B and we would sit at a table. I was unsure if he understood as at 8 he has complex autism, learning difficulties and a brain tumour. I had already prepared him though and just the day before we had been on the same train for the journey down. He had loved that journey and I was sure he would love this one too.

But as I helped him over the large gap and headed for our booked seats on the busy train I had no idea of the huge meltdown I was about to face.

The seats we booked were not where they should have been and instead of a table of four we were instead booked to sit on a row of two with the other two seats behind. No amount of explaining would work and Isaac sat down in the aisle of the busy train and screamed.

He screamed and he screamed. He banged his head and bit himself. He shook and kicked his legs. He could not cope with such a simple change as a different seat. It was awful.

He was scared. I was scared. He was crying, his sister was crying and I was crying inside. It was like a scene from a horror movie with all eyes on the train on me and my son and I had no idea what to do. My son was a danger to himself and others and was causing an obstruction on a busy train that was unable to stop.

I sat on the floor beside my traumatised son and tried to calm him as a member of the train crew approached us. Through the noise and distress of my son and his sisters crying I somehow managed to explain to the assistant what the problem was.

Immediately she did everything she could to help. She checked every carriage on that train for a feee table but there was none available. I tried to see if Isaac would sit on some fold out seats near a window or perhaps even stand at the door. I had told him we would be sitting at a table together and that was all his brain could process. One little change had disturbed him so much his body was in crisis.

And then a stranger offered to help. With tears in her own eyes she came down to where I was and said she could see the distress of my son and would he like her table seat. She was not angry or frustrated, or even annoyed; she showed compassion and gave up her own seat to see my child happy.
I thanked her and we sat at her table and immediately Isaac began to calm down. Everyone was looking at me and I was waiting for a stare or rude comment or cheeky remark. We got none of that. All I saw were people moved by what this lady did and by seeing a child with special needs so upset.

I was so touched but more was to come.

IMG_1108As the train employee returned she handed me a bag. She apologised for the booking mistake, gifted us a whole bag of food from the buffet trolley and called ahead to our destination and booked assistance for us. She then asked what Isaac enjoyed doing and when I said he loves pressing buttons she lead him through the entire train and let him press buttons at doors, toilets and even on her ticket machine.

IMG_1107She turned Isaac’s distress to utter delight. As I walked through the carriage and past the passenger who had give up her seat I looked at her and cried. She too has eyes filled with emotion as she watched my son laugh as the toilet door opened when he pressed the button.

Yesterday I witness kindness on a scale that changed me. I saw not only autism awareness but autism acceptance and compassion. Instead of stares I saw smiles. Instead of rudeness I saw understanding.

My child is not badly behaved or spoiled. He was highly distressed over a simple change that I had no control over. He was told something would happen and that didn’t go to plan. He could not voice what was upsetting him and he was scared we were on the wrong train since we had no table.

I cried when my son had a meltdown on a busy train yesterday because I hate seeing him so anxious and scared, but I also cried at the actions of complete strangers and simple acts of kindness that I will never ever forget.

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I found this bag this morning as I was sorting though our luggage. It reminded me again of yesterday and why I cried when my son had a meltdown on a busy train.

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