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

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The day he chose his own birthday present

imageI had waited for this day for many years.

He has yet to tell me what he would like for Christmas or a birthday. He has yet to speak, period. He isn’t able to look through a toy catalogue and mark the things he likes. He has no concept of adverts and no interest in toy shops other than the automatic doors or the lift.

Birthdays and Christmas are therefore hard. We basically guess what he might like based on observation and knowledge of his sensory preferences. Sometimes we get it right. More often than not we completely waste our money on things he never goes near.

If we find it hard how much harder do relatives and friends find buying for a child who never plays with toys?

So at his birthday party this year lots of people opted to give him money. And I totally understood why.

But that left me with an even bigger problem: now we HAVE to do something and get something for him.

I was stuck.

So in desperation I decided to venture into a shop with him. That meant pushing him beyond his comfort zone of the automatic doors at the entrance. It meant picking a time when the shop would be most quiet, not only in terms of people but also in terms of tannoy announcements, music, and noisy technology. It meant risking a huge public meltdown.

I tried to prepare him. It’s not like I can tell him he has birthday money and he can come choose a toy. He has no concept of what a birthday is let alone what money is. I am not entirely sure he even realises what a shop is? So I kept it simple and told him he was coming somewhere special with mummy to get something he would really like.

He loves his mummy does that boy.

So I searched for his socks and shoes and lifted him into the car. At seven this gets harder by the day. I took him to a shop we have been to many times before. The whole journey I kept repeating that today we were going into the shop and he could chose himself something nice. As I glanced at him flapping in the mirror I thought for a moment he may actually have understood me.

I think I was right.

He took my hand. He walked right through those beloved doors and he smiled and laughed and flapped like he had just won a coveted prize.

Then he stopped right where he was. He picked something off the shelf and he took my hand and dragged me to the checkout.

I was so utterly in love with him. I was bursting with pride! I wanted to shout about this magical achievement to the ends of the world.

My son has just chosen his own birthday present!

I had no need to worry about the cost. Or wether he needed batteries. Or even if I needed scissors or a screwdriver to get through the packaging. I never even needed to purchase a carrier bag!

He held his prized possession all the way home in the car, turning it, licking it, and smiling at it.

He knew he had chosen well. And so did I.

I actually wonder why I never thought of this before…

After all surely every seven year old wants a tin of baked beans for their birthday present!

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My Christmas miracles

imageI believe in miracles.

But the reality and daily grind of life can shatter that belief until it feels like miracles only happen to others. Then I witness a moment; a tiny fraction of time, and that belief is restored once again. Those moments often happen when we least expect it and in the normal everyday occurrences, so we need to be watching and waiting and believing. Sadly too often I am overwhelmed, exhausted and so busy I almost miss those moments of beauty right in front of my eyes.

This last week though I have noticed two miracles with my son. Nothing huge like starting to speak, or new physical skills like kicking a ball or jumping (stuff other seven year olds do without even thinking!) or even independence skills like showering himself.

No to most parents of seven year olds my miracles would seem trivial indeed; unmentionable, so run of the mill they would be taken for granted.

But one thing that happens when you parent a child with additional needs is that you learn NEVER to take anything for granted!

I had taken the children to a Christmas party. The fact we even got inside the door could be classed by some as a miracle. The fact my son was no longer wearing his red school jumper this year (he wore nothing but his school jumper for two years everyday) could easily be noted as a miracle. In many ways that was something I never thought I would ever see. The fact he climbed onto the bouncy castle and enjoyed the vibrations while everyone else jumped was amazing. These are all massive achievements for my son. He never joined in dancing or games and wandered around very much still in his own little world. But that was ok.

He ate when the food was offered and he never had a meltdown or attacked anyone and he was smiling and happy. I could end here as these are all massive achievements for us.

The Santa came.

He has no idea who Santa is. He has no concept of Christmas. So I just held him on my knee while the other children got excited and waited eagerly for Santa to give them a gift. He moaned and squirmed a little with being held but seemed to watch in his own little way. As an adult I knew at some point his name would be called. But how would he know that?

“Isaac” said Father Christmas with his usual smile and excitement.

I was just about to take my sons hand and drag him up. But before I could move he stood, he looked right at that man in red and he walked right up to him, took his gift and brought it right back for me to open!

imageHe responded to his name! He took a present from Santa! He watched others and figured out what was expected!! I am so overcome with pride about those things.

Not that long ago he had no idea what his name was. He would not go anywhere he had not already been to before. He never watched other children. He would not have had any idea what a present was, especially if it was wrapped.

But this weekend I had my Christmas miracle.

And later this week I have another one too. He is only going to be Joseph in his school nativity play! He is part of it! He has a role! And to whatever degree he understands he will be acting out that role. It is what seven year olds do. But something I never dreamed I would see.

In case you did not know, my son has classic autism. He is still wearing nappies and unable to speak. He has Neurofibromatosis, a genetic condition that can cause learning difficulties and delay. He can not read or write or count. He can not dress himself. He is very much in his own world. I worry what the future holds for him, and the many hundreds of others like him in this world.

But miracles happen all the time. And this Christmas they have happened to me.

Keep looking and one may just happen to you too.

When an angel captured love

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Do you believe that dreams can REALLY become true?

I do.

Many years ago I visited a friend’s house and my eyes were instantly captivated by a large family photograph mounted on their wall.

‘Wow’, I thought, ‘I would just love to have something as amazing as that of MY children one day.’

Fast forward twenty years and that dream has always remained with me. But the challenge of ever having that dream come true seemed to get slimmer every year. Yes I had the children, but taking an everyday picture of them both was a big challenge let alone getting them into a studio! Eye contact was an issue, understanding instructions another issue, posing impossible, and the bright lights and flashes a trigger for sensory overload and seizures. Beautiful professional photographs just one of the many things families like mine with ‘special’ children have to sacrifice at times.

But then I met an angel.

She read on my Facebook account how I was so emotional and grateful that one of my children’s schools had gone out of their way to allow my children to have a school family photograph taken. When your twins are separated by 14 miles in their education and one school does not even have school photographs taken you realise how this simple act could mean so much to me. What seems a ‘normal’ occurrence to most families became a real act of kindness to me.

Then an angel replied with seven simple words, ‘I can do one better. Call me.’

I spoke to the angel about my children. Did she understand how hard this could be? Would my children even get out the car on the day? Was she aware they have poor balance and co-ordination and would be unable to pose? Did she know my son could scream the entire time we were there? What would happen if my daughter would not smile due to her anxiety? I was as anxious as my children. Would my dream be about to become a reality? Would it be possible to capture love on a camera?

With the skill, patience and dedication you can only get from an angel my children not only coped but they SHONE!

I had a dream over 20 years ago and that dream has come true. I met an angel one day. She thought she was photographing my children but in actual fact she captured love in its purest form. She took two children who find life challenging and she found their beauty and personalities. She transformed everyday moments into priceless memories. She gave my son a voice when he has no ability to speak. She gave my daughter confidence that can not be measured. She took an everyday family and made us feel like we were royalty.

Do you believe dreams come true? My dream came true the day an angel captured love:

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Sometimes angels have names. This angel is called Amber Northfield Studio Boo.She took my dream and she made it come true. I can not thank her enough.

Now which one do I put on my wall?