Special skill

26 April 2018

Dear friend,

Yesterday I was asked, What's his special skill?

I felt myself blush and become tongue tied and mumbled something about him having a great memory and being a visual learner.

The truth is that my son doesn't have a special skill (that we know of).

I understand why some people might think that.

Many of us have been brought up with the view of autistic people as 'mad professors' or 'autistic savants'. You know the types, the university lecturer who can solve complex mathematical equations yet can't fasten his tie, make eye contact or drink coffee without spilling it down his shirt or the 'rainman' who can tell you the day you were born on from your date of birth or draw a city perfectly from memory but struggles to function in everyday life.

There is something fascinating about genius that draws you in. People with a gift are amazing, interesting and special. Stories of genius awaken the curiosity.

But having an autism spectrum condition doesn’t guarantee any specific talents. In fact only around 5% of autistic people are considered savants.



My son is of average intelligence (according to school) he is below average (according to an intelligence test: I hate intelligence tests but thats for another day) and uniquely intelligent (according to me).

The truth is that he has a disharmonic profile. In some areas he is actually way above average, in some areas average and in others below.

A diagnosis of autism means only one thing: you’re autistic.

The story of the autistic genius is a stereotype and the problem with stereotypes is that they are a single story of autism. There are many many stories of autism...

Autistic people are all different, just like everybody else!

Yesterday I was asked, What's his special skill?

My answer should have been;  Aways being himself...





A glimpse into autism is a series of short letters that explore the impact autism has on our family on a day to day basis. Disclaimer: this is our experience not all autistic people are the same.






#PointShoot Week 53

24 April 2018

Do you love making photos of your family? Do you like to record the everyday memories you are making? Then #PointShoot could be the linky for you. Come and share your photo story posts with me. 

You can share days out snaps or a fun, special, or touching moment from your week. It can be one photo (including Instagram posts) or a series of shots with words or without.


This week's featured post comes from View from the Beach Chair.



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A photograph is the pause button of life.

We are open from Tuesday 6 a.m. until Friday 6 a.m. (so there is plenty of time to link up.)


Link up your weekend pictures!








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Secret

19 April 2018


Dear Friend,

Yesterday you asked me why I felt the need to tell people that my son has autism?

My initial reaction was panic and I babbled back a response about safety, openness, etc

Afterwards I felt mad, really mad!

I shouldn't let these questions push me off kilter, I should be a better advocate for my son and for myself by now!

I have always wanted people to see my son for who he is not for what he has.

I do not wear my son's autism like a designer handbag (as one psychologist has ridiculously claimed) but neither am I ashamed of it!



Having autism is not a secret.

Having Autism is not something to be ashamed of!

I never want my son to feel like he has to hide his autism or conform to certain rules.

I want my son to be himself, completely...

I can not separate my son from his autism.

Autism isn't an add on, it is an inherent part of his identity.


I disclose my son's autism when it is necessary or helpful.

I disclose for his safety and his comfort.

I disclose because I accept my son for who he is. 

I disclose because I will never be ashamed of my boy!

And yes, I disclose because sometimes I need support too.


Yesterday you asked me why I felt the need to tell people my son has autism...

I ask you; Why not?



A glimpse into autism is a series of short letters that explore the impact autism has on our family on a day to day basis. Disclaimer: this is our experience not all autistic people are the same.

#PointShoot Week 52

17 April 2018

Do you love making photos of your family? Do you like to record the everyday memories you are making? Then #PointShoot could be the linky for you. Come and share your photo story posts with me. 

You can share days out snaps or a fun, special, or touching moment from your week. It can be one photo (including Instagram posts) or a series of shots with words or without.


This week's featured post comes from Queen of Collage


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We are open from Tuesday 6 a.m. until Friday 6 a.m. (so there is plenty of time to link up.)


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One Moment in Time with Mission Mindfulness

13 April 2018

Welcome to one moment in time, a guest posts series, where bloggers share the stories behind special or significant photographs. I am over the moon to be able to introduce this week's featured blogger the fabulous Hayley from  Mission Mindfulness blog. Her brilliantly put together, thoughtful posts always leave me feeling inspired. She is a wonderful, kind person and a really supportive blogger too. Thank you so much for joining me!




Just another badly taken photo of me and the hubby at a party pre-kids? Well yes. And no.

It was in the days before Insta and 'selfies' so there is a lack of self-consciousness about how and where we posed.

But there is also a lack of self-consciousness because we were on top of the world that day. We didn't care for others opinions that day. I won’t ever forget how I felt. 2009 had been a tough year but early in 2010 we had something to celebrate.

Not only were the hubby and I celebrating my brother-in-law’s 30th Birthday, but we were also celebrating our own personal victory that night. Keeping our news close to us. Keeping our news between us so as not to burst our own bubble of happiness.

You see if anyone had been paying attention they may have noticed that I wasn’t drinking at that particular party. And this was unlike me.

The reason I wasn’t drinking? Well I’m sure you’ve guessed already. I was pregnant.

I’d only found out that morning. I’d done a pregnancy test hours earlier and it was positive. After nearly two years of trying to conceive and over ten years of being together, we were expecting our first child.

You hear it often but it had happened to us… we had been taking a break from thinking about starting our family. Preparing ourselves to have some medical help later in the year. And then it happened. Unexpectedly. Spontaneously.

Nine months later we were blessed with our beautiful baby boy. Our eldest child who became a big brother to our miraculous twin girls.


So yes this is a badly taken photo. But it’s a badly taken photo of a couple who can finally see the future they had dreamed of, right in front of them.



Do you have a special photograph and story you would like to share? Then I would love to hear from you!




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If you would like to join in One Moment in Time please DM me. I am looking for new guest posters now!


More from One Moment in Time...


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.






#PointShoot week 51

10 April 2018

Do you love making photos of your family? Do you like to record the everyday memories you are making? Then #PointShoot could be the linky for you. Come and share your photo story posts with me. 

You can share days out snaps or a fun, special, or touching moment from your week. It can be one photo (including Instagram posts) or a series of shots with words or without.


This week's featured post comes from Sensational Learning with Penguin


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A photograph is the pause button of life.

We are open from Tuesday 6 a.m. until Friday 6 a.m. (so there is plenty of time to link up.)


Link up your weekend pictures!







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Life lessons of an autism parent

5 April 2018

Dear Friend,

I am mum, mam, mummy, mama, mother however you want to pronounce or say it. I am the female parent to my children. It can be relentless, frenetic, exhausting, a world full of school runs, lunch making, cleaning, washing and juggling commitments. But it is an amazing job to have, I would argue the best in the world! 

To be perfectly honest Motherhood hasn't quite been the trip that I expected. When we were thrown the curve ball that is autism it quite frankly knocked me off my feet. But several years later, I know that actually, being a Spectrum Mum has taught me many positive life lessons for which I am extremely grateful! 



Unsplash Photo Janko Ferlic

Life Lessons


Prioritise: Pick your battles. Don't sweat the small stuff. As a perfectionist this is difficult but I am learning what is really important in the scale of things and sometimes choices have to be made e.g. wearing sweatpants V smart trousers,  special V 'normal' school, trying something new V eating pizza again.

Expect the unexpected: just when you think you know how the big lad will react he surprises you. I can tie myself in knots trying to protect my child but the unexpected response is sometimes a blessing. I have learned that I cannot plan for every eventuality. I can not always be in control.

Keep a positive attitude: my son approaches every new challenge with a smile on his face, full of fun, enthusiasm and mischief. A positive attitude helps you cope more easily with the things life throws at you.  

Accept help: at big lad's last review meeting there were ten people present. Over the last 6 years he has seen many therapists, psychologists and Drs. He accepts the help without question. We are learning to open up and ask for help too. Asking for help is not weakness, it is a strong person that acknowledges their vulnerability.

Take time out for yourself: after a long day at school the big lad needs time out. For him this is usually gaming. I am learning to take time for myself. It is too easy to ignore our own needs and prioritize others.

Forgive & Forget:   The big lad is incredibly loyal, a friend is a friend, no matter what. Give people the benefit of the doubt and accept them for who they are. No judging, no recriminations. Everyone makes mistakes.

Be yourself: there is a massive amount of pressure on us to conform, to follow the majority, to fit in. It takes a huge amount of courage and self belief to go against the majority to stay true to yourself. Autistic children have no falseness about them. He is not striving to fit in, to be normal, he is only striving to be himself!

Challenge yourself: step outside of your comfort zone. Do things that you didn't think you could. Try new things. But mostly challenge those stereotypes and don't be limited by others' expectations or beliefs. Reach for the stars and never accept the words can't or won't. 

Lighten up: It is easy to get caught up in the negativity surrounding a diagnosis of autism. But it isn't all doom and gloom, in fact autism can be really funny! 

Celebrate the small victories: Very often we are so busy trying to conquer a big goal that we forget to acknowledge the small victories along the way. Autism teaches you to celebrate every small step on the ladder to greatness no matter how small the victory what matters is you are heading in the right direction. 




Persevere: it amazes me how resilient my big lad is. Learning to ride his bike, using a knife and fork, climbing the frame at the park, learning to swim, it may take longer but he always gets there. He never gives up!

You are the expert when it comes to your child: I listen to the advice of Drs, Psychologists etc and I take on board what they say but I am the expert when it comes to my son as I know him better than anyone. Professional advice is not always right! Go with your gut. 

Love Unconditionally: I wasn't prepared for the overwhelming, all encompassing, crippling love that you feel when your child is born. There are times when I feel that the strength of my love is being tested by the big lad but as the saying goes, you always hurt the people you love the most. Being a parent has taught me the real meaning of unconditional love: choosing to love someone for who they really are.


What has being a parent taught you? Let me know in the comments. 



This is a revised post that was originally published in February 2015.


Check out more autism posts here.





#PointShoot Week #50

3 April 2018

Do you love making photos of your family? Do you like to record the everyday memories you are making? Then #PointShoot could be the linky for you. Come and share your photo story posts with me. 

You can share days out snaps or a fun, special, or touching moment from your week. It can be one photo (including Instagram posts) or a series of shots with words or without.


This week's featured post comes from Hayley at Mission Mindfulness.



Feel free to grab your featured blogger badge!





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A photograph is the pause button of life.

We are open from Tuesday 6 a.m. until Friday 6 a.m. (so there is plenty of time to link up.)

Link up your weekend pictures!

We have a lovely supportive community here which I am proud to host. I hope we continue to support each other to keep it that way. Please remember to follow the rules and comment on the required posts. Thank you!








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Autism is...

2 April 2018

Dear Friend,

My son had to give a presentation at school and he chose the topic Autism.

He never fails to surprise me!

We enthusiastically started our research for the topic but that soon changed. The reaction we both had to the available materials was quite surprising and shocking.  My son was very upset by one particular video we watched and stated,
I hate autism...


Whilst I understand that the information has to be 'real' and 'honest' for any autistic person or parent the information about autism can be scary, depressing even.  Many resources we found focused too much on the deficits or the extremes of autism.  Where is the wider spectrum represented?

How could we turn this around?

Together we attempted to write our own 'real' and 'honest' yet hopeful version of what autism means to my son. We hope you enjoy it!



Notes:
Slide 2: We will begin with a Quiz: Please look at the 5 questions and give an answer of true of false. Save your answers as we will return to these at the end.
Slide 6: Select the green link for a video: Autism and the senses.
Slide 7: Select the triangle to watch the video. (I added Dutch subtitles for the class)


The morning of the presentation, I don't know who was more nervous? I was really frightened that he might be overwhelmed or get upset. He woke up with a sore throat and needed some of mummy's magic medicine to get him going.

But... I am very pleased to say that he did it and he reported with a huge smile on his face that everyone clapped and chanted his name when he had finished. He also got an 8.5/10 from his teacher. One Proud boy and one very proud Mummy!



I am filled with pride but not at the 8.5/10, don't get me wrong that is amazing! But that this boy who hated being autistic and cried everytime we used the word autism, who only saw the deficits, who has had counselling to help him come to terms with his Autism. Has come so far that he can stand up in a room full of his peers and say, I have autism, this is me! 
 
Having Autism doesn't put limits on your life, attitudes do. Let's challenge those stereotypes!



If you would like to reproduce the slides or use the presentation in English or Dutch please contact me. 




This is a revised post.

Photography @My_Dutch_Angle

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