Raising understanding of autism through blogging

12 April 2018

Dear Friend,

I started blogging with no agenda. I hadn’t read blogs and had absolutely no idea what I was getting myself into. I just needed to write … My brain was filled with questions and thoughts that needed a space to grow. Through blogging I found that space and started to breathe out again. 

Then something amazing happened - people started to comment. Other parents reached out to me. People told me that I’d helped them learn more about autism. Other autism parents reached out to me, other bloggers, friends, colleagues… people were reading my words. 

Raising awareness felt good, it felt like I was doing something, achieving something.

I never dreamed that three years later I would still be blogging but I will continue for as long as I feel I am raising understanding...




In honour of World Autism Awareness Month I am re-sharing some of my most read  posts...



A Glimpse into our autism: Losing my shit!

Yesterday I lost my shit.

One minute I was feeling uncontrollable anger and the next I was crying at some ridiculous meme on Facebook. I just couldn't get a handle on my emotions at all.

Lately it feels like I have been engulfed by the weight of my responsibilities.

Quite simply the world is not set up to deal with the needs of children and parents with autism.

Everyday we face some kind of battle whether it be, finding the right school, fighting against bullies, facing stereotypes, feeling rejection, dealing with negative behaviours or handling judgement... and it never stops.

I am always going to worry about my son, his issues are never going to disappear.

A child with autism grows up to be a tween with autism then a teen and an adult with autism. The autism won't vanish with age.

Sometimes dealing with this knowledge can be all consuming. But I never say that out loud.

Read more...

I wrote this post at a time when I felt totally overwhelmed by what we were facing. We were fighting to get our son into a Secondary School for autistic pupils, he was having problems at school with bullies and we were battling against the system to try and get him help. The post went viral, it obviously struck a chord with a lot of parents. 


How to explain autism to siblings

How do you explain autism to children? Lately we have come across this issue in our own family as our youngest son (aged 7) has wanted to know more about his brothers autism. He has always heard the word 'autism' at home as we talk openly with our eldest son about his issues. But thanks to a caring teacher we recently found out that our youngest was struggling to understand what autism means and was feeling a sense of care and responsibility towards his brother (read more). We needed to explain what autism is.

We have always been open about autism but before now (under 7) we felt it was important to keep things simple. Things we told our son:
  • Your brother has a busy brain
  • Your brother sometimes gets a full head
  • You are safe
  • Your brother loves you
  • You are not autistic
  • You can’t catch autism

Initially, this was enough but the autism discussion needs to be an ongoing one because as our son has grown so have his questions. 

Read more...

The majority of my blogs are based on our personal experience. My youngest son was struggling to understand his brother's autism. I did some research and spoke to our Dr to get information about how we could help him. I wanted to share this with my readers. It is important to remember the emotional needs of the siblings of children with disabilities too. 


To the lady who criticised my son for using a mobile phone

Yesterday I heard you talking about us. I heard your disapproval and I felt your judgement.

Look at that young boy on the phone, isn't it terrible?

Initially it made me feel small, ashamed, like a bad parent because to be honest part of me agrees with you as I do wish that my son wasn't on his mobile phone at the beach. I would much rather that he was enjoying the beautiful scene before him than staring at a Pokemon.

But please don't judge my choices without understanding my reasons.

You look at my son with very different eyes...

I see a gadget that connects me to my son.

I see an aid that connects our son to us.

I see a tool that takes the focus off the things that cause him anxiety.

I see a family out together, relaxed and enjoying a walk without their son constantly asking when are we going home?

I see a family enjoying a drink, in peace  and a boy happily playing.

I feel a boy who struggles with anxiety becoming more confident.

I hear a shy boy actually chatting with the waiter (a stranger) about which Pokemon he has caught.

I feel his enthusiasm and use that to make a connection with him by sharing his passion.

I feel proud of a boy who has started to play out on his own, call for friends and make new friends too.

Far from stunting his social development having a mobile has actually expanded it.


I am not very good at confrontation and always think of the perfect response after the event. This post was my answer to a comment I overheard at the beach one Sunday afternoon. 70% of autistic families still feel socially isolated and 50% don't want to go out because they are worried how people will react. (TMI Campaign Report) I hoped that this post would show people how we can easily jump to conclusions or make snap judgements about people that are unfair and can leave families feeling alienated. 


A Glimpse into our autism: Holidays


Yesterday he asked me:

Why am I like this?

He came downstairs after bedtime and stood uncertainly in the doorway. I could sense his anxiety.

I swear I felt another chink appear in my already battle scarred heart.

I didn't need to ask what he meant. The week had been filled with many small instances of confusion, anxiety and mislaid moments.

At half term we lose the familiarity that a day at school brings, we lose the structure and enter into unknown territory. We go back to walking a tightrope but negotiating the wobbles that appear on the path becomes harder because of the holiday.
A trip to the UK, on an aeroplane, staying in a different house, different bed, staying up late, going out for dinner, visiting people, shopping etc adds to the chaos. What for us is a holiday filled with fun, to him is a time filled with anxiety.

He cried, his head was too full, we had done too much...


Read more...

This 
blog is part of my Glimpse into series, short letters that explore the impact autism has on our family on a day to day basis.  All the Glimpse into posts are based on personal experience. Here I explored how a lack of structure during the holidays can have a massive impact on my son. 


Why I hate Birthday Parties!


Birthdays are a wonderful time. A day to celebrate, to feel special, to show people you care. Magic moments spent with family and friends. Balloons, bunting, presents and cake. In Holland birthdays are a huge deal, traditionally celebrated with a Dutch circle party.

Since having kids my love of birthday parties has turned to dread and fear. It is not family parties that fill me with dread but other children's.
What do you do when your child isn't included? 

Every child is different. Not every child can be the popular one and as a teacher I get that. 

I am not a helicopter mum, hovering around my children, organising play dates every day, pushing to make connections, to forge friendships. I want my kids to make their own way to choose their own friends. But as a mum I find it hard to see how anybody wouldn't love my little darling, wouldn't want to be their best friend, wouldn't want them at their party.

How do autistic children contend with party season?

Let us first dispel this myth that autistic people are loners who do not want friends. 

For the big lad the opposite is true. He thinks that everyone is his friend. What a great attitude to have. 


Read more...

One of my first posts and it remains one of my most read. Why I hate birthday parties describes the disappointment I felt when my son was not invited to a friend's celebration. It demonstrates how upsetting it can be when those closest to us fail to really understand or accept our son's autism.


Thank you to everyone who has read my blog over these last three years. Thank you for all of your comments and a huge thank you to anyone who has shared one of my posts too. Each and every one of you are helping to raise awareness, understanding and acceptance of autism. I am very grateful for your support and kindness. Together we can and will make a difference!



Check out more of my Autism Awareness posts here.

I read a brilliant post from my blogging friend Ann over at Rainbows are too Beautiful, that inspired me to write this blog. Check out Ann's Autism Awareness posts here.






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