A Glimpse into our autism: Voice

5 December 2018

Dear friend,

Last night I couldn’t sleep. This time I wasn’t laid awake worrying about one of my boys, something I said wrongly, what to make for dinner tomorrow or the washing I forgot to take out of the machine. I was actually thinking about an exchange on social media.

I proudly display the following quote on my blog:
“Don’t be afraid to tell your story because your voice is important and your story is unique” Meredith Levitate

But this exchange left me wondering if my voice was important or indeed relevant...


In the 4 years since I started blogging a lot has changed.

The autistic community is demanding acceptance and challenging the deficit model. It feels like autism has finally come of age, along with a wave of children who were diagnosed as being autistic.

Autistic people are strong and capable self-advocates shouting from the rooftops about what it means to be actually autistic. Fighting the stereotypes, demanding to be recognised as neuro-divergent and not less and for basic rights to good health care, education and access to services and activities.

There is a welcome shift in thinking towards a more inclusive society that celebrates neuro-divergent people. We are seeing a massive movement towards real change. Starting at the person rather than at the cure.




Writing started as a sort of therapy for me. A place to open up about my concerns and to share experiences. It made me feel less isolated at a very difficult time when I felt like I was drowning in my emotions.

It is an indictment of mental health provision for parents of autistic children that so many have to turn to an online world for help.

I hope that anyone who has read my blog knows that I have always approached my writing from a place of love. That I want acceptance and understanding for my son. I don’t want to change him. I want to challenge the stereotypes and provide a positive space for parents of children with autism.





I am open to learn and to engage in healthy debate. But I am extremely uncomfortable with the extent of the negativity, towards parents of children with autism.  Lately, I have witnessed several extremely aggressive exchanges on social media and some very intimidating behaviour.

A few weeks ago, an autistic person challenged my thinking and questioned my right to speak about autism on a social media platform. They demanded that I '...stay out of...'  certain hashtags.

I took on board their comments. It caused me to re-evaluate, to change some of my language, think more carefully about the hashtags I use and also make it clearer on my social media profiles that I am the parent of a son with autism and not a mum with autism. All positive changes.

But the experience played to my insecurities...

Has my voice grown weary?
Do I have the right to share our experiences?
What will my son think?
What do I want to achieve?
Are autism parents 'watering down' the voices of actually autistic people?
Are autism parent blogs becoming obsolete?


Last night I couldn't sleep. Is now the time to stop?





A huge thank you to everyone who has supported me over the last 4 years. I wish you all a very happy Christmas. 
I will be taking a Christmas break, having a good think and hope to be back in the new year. 


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.

More autism awareness posts...

#PointShoot December

4 December 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 Month's featured post comes from @myrealfairyblog



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A photograph is the pause button of life.



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Photo Diary November

3 December 2018

Dear Friend,

I love capturing the ordinary moments and special times with my camera, looking at our life through a lens gives me a clearer focus. Here I take a look back at some of my favourite moments from the month. 

 Now over to my photo diary... Happy days!


This month I am grateful for
  • Saturday afternoons exploring the stunning city of Leiden
  • A family trip to the cinema to watch the new Fantastic Beasts movie
  • Papa taking the boys swimming so that I could have a lazy Sunday morning
  • Beach walks and sunny days
  • Family evenings, snuggled up watching TV
  • Mother-in-laws that make dinner when you are feeling sick
  • The kindness of colleagues
  • Games of Monopoly and Battleships
  • The sparkling lights in Leiden lighting up the dark nights
  • Sinterklaas arriving in Holland
  • Bike rides
  • The boys putting out their shoes for Sinterklaas 
  • Starting the Christmas shopping
  • Warm hats and wooly scarves and cups of hot chocolate with whipped cream
  • Cuddles from my dog




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Parenting a tween

28 November 2018

Dear friend,

Life has been a bit hectic lately. I’ve started working more. We’ve had new routines to get to grips with, big lad started his new secondary school, little man’s been struggling to come to terms with Opa’s death. We’ve been stuck in the merry-go-round which is our life going through the day-to-day just getting on with things, you know, like you do, just keeping on going.

Occasionally things happen to bring you back down to earth with a big bump. I guess that’s what’s happened now because the last couple of weeks, when illness knocked me off my feet, it gave me time to think. Pressing the pause button has enabled me to recognise that I’m feeling stuck.

My safe and cosy family bubble has changed. It is like I went to bed one night with my family and woke up the next morning living with another. Okay maybe I’m being a tad dramatic. But living with a pre-teen is pushing me to the limit.

 

As I hear the words; Oh my God how embarrassing, I’m not singing to Sinterklaas, coming out of my son’s mouth I question my parenting skills. Now that his belief in Sinterklaas is over, have I built a lasting memory, have I given him the best childhood I could? Did I do enough, make it fun enough, was I enough?

Shopping trips are boring and going into the city can’t compete with a Fortnite tournament with friends.

Every day begins with the question; What are we doing today? And then; Do I have to come?

I dangle a carrot in front of his nose; Let’s go to the zoo, have dinner at your favourite restaurant, go and see that movie that you wanted to watch. I’m desperate to keep the connection alive. Only to be brought crashing back down to earth with one simple question; How long will we be?

When he deigns to come along, he is with us but at the same time not. Focusing more on the world held in his hand, tapping away expertly on his mobile phone.

I’m left mourning the days when, we jumped in the car and headed off on weekend adventures. It didn’t matter what we did as long as we did it together. Now we are stuck in arguments. I’ve heard myself yell; Put the bloody phone down, are you part of this family?

I’m hurting from the rejection. With every barked, angry retort my best by date is looming. I can feel my parental shelf life dwindling like a bargain item in the supermarket.

I am also confused by the conflict of interests I’m feeling. Whilst I am mourning the end of family time as we knew it, I am also delighted that it is happening. I wanted him to have friends, to have independence, to have a ‘normal’ life. In the early days of his autism diagnosis I could never have imagined this moment. I am proud of his rebellion.

Nobody tells you when you become a parent that it’s all consuming. When they are small you are their world. They need you, want you, can’t live without you. But equally no one prepares you for the time when you are not. Did you know that they grow up?

What will this new parenting phase mean for me? I want to be a good mum. I am prepared to put my feelings aside to give him more of the freedom that he craves. But that doesn't mean I won't miss what we had, won’t miss being needed.

I am an imperfect mum but I love unconditionally. I hope that is enough! 

A Glimpse into our Autism: The label

21 November 2018

Dear Friend,

Yesterday she asked me why I labelled my child...

It hit a raw nerve.

The dilema, to label or not to label, started when we began the diagnostic process. Family and friends were quick to offer support and advice, most of which was meant to reassure but actually often lead to heated discussions as well meaning people told us;

There’s nothing wrong with that kid or he’s as bright as a button or don't label him too early.

I put their reactions down to embarrassment or denial; like autism was something to be ashamed of or that they believed he would grow out of.

Autism is not a label it is a diagnosis. Would people have had the same reaction if my son had been diagnosed with an illness or a visible disability? Would you tell someone not to use the term diabetic or downs syndrome?





I can honestly say that I did not begin chasing a diagnosis but that nursery and preschool nudged us in the direction of professionals because our son was having significant difficulties and we needed help. I simply could not ignore my son's needs.

I am sick of hearing the unsolicited advice; You don't want him to be defined by his label. Of course, I don't want my gorgeous boy to only be known as the boy with autism. I agree that we need to see the child before the diagnosis. But he is autistic...

If we hadn't accepted the autistic diagnosis then surely we wouldn't have been accepting our son for who he is?

Yesterday she asked me why I labelled my child...

I didn't. He was diagnosed with autism.


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. 

20 signs that you are addicted to blogging...

17 November 2018

Dear friend,

In celebration of 4 years of blogging I wanted to reshare this tongue in cheek post about blogging. A huge thank you for all of your support over the last 4 years! 



20 Signs that you are addicted to blogging:

  1. You go into a panic when you don't have wifi
  2. Your iphone/ipad/macbook is always within reach
  3. You check your twitter feed last thing at night and first thing in the morning
  4. Every conversation is blog fodder
  5. Your house work routine is sporadic (related to the post your working on)
  6. You have a detailed linky list
  7. You take your camera everywhere and even have a mummy photo pose
  8. Your kids make comments like - Mummy take my photo on the seal, that will be good for your blog
  9. You have even got your kids involved in blogging
  10. You constantly have a blogging narrative in your head
  11. When not blogging you are reading other people's blogs
  12. You mentally blog and then kick yourself for forgetting the brilliant snippet you had created...
  13. You wake in the middle of the night and go downstairs to write because you've remembered the idea you mentally blogged earlier
  14. When talking about your friends you qualify with 'my blogging friend'...
  15. You know more about your online friends lives than your 'real' ones
  16. Your real life friends don't understand half the things you say (linkies, tribes, Klout, DA) it's like you are talking another language
  17. You check your page views/followers/klout/DA religiously
  18. You can't go on holiday before scheduling everything
  19. You have a laptop shaped indent on your thighs/Carpal tunnel syndrome from holding your phone. 
  20. Your blog is your home page

Are you an addict too?

Are there any signs I may have missed?

This is a revised post 






Encouraging children to write

14 November 2018

Dear friend,

Want to help your child at home with their writing but not sure how.  There are many easy activities and things you can try to support your children without being too heavy going. The worse thing you can do is force your child to write if they really don't want to. It should be fun! Here are a few simple things you can do to promote a love of writing at home. 

Encouraging children to write


1. Read together!
Read read and read some more. The best activity to improve writing is reading. If your child reads good books, they will be a better writer.

2. Talk about their drawings. 
This is the beginning of story telling.
Label the drawings as they tell you about them (check first as some children don't like you to do this!)

3. Use lots of different materials.
Foam, chalk, paintbrushes (various thicknesses), aquadoodles, a variety of pens, pencils and paper, draw on the shower door etc 

4. Make writing or mark making a game or use games
There are numerous games and puzzles that help children with spelling while increasing their vocabulary including crossword puzzles, hangman, word games and anagrams.

5. Make Books. 
Turn your child's writing into books. Act as scribe for your child.



6. Be a good role model
Make sure your child sees you writing

7. Write for real purposes together
Shopping lists, letters, birthday cards, thank you notes, messages, have a chalk message board in your kitchen. Send e-mails to relatives or friends.

8. Encourage keeping a journal
Become a mini blogger or reporter write photo stories or recounts of days out.



9. Connect writing to your child's passion. 
Write a report about a favourite animal, game, character, Skylanders figures.

10. READ!!!

Yes I know I've already said read but it is so important that I am saying it twice. 


This is a revised post.



Over Protective

7 November 2018


She told me I was
Over protective.
I listened, I heard, I tried to explain
but she did not listen...

We fought for this appointment
We waited for an eternity...
The anxiety crept into my throat
Strangling my vocal cords.

I am mum, mummy, mama.
It is my job to protect,
To worry about my son.
Isn't it?

I sought specialist help
I attended every appointment.
I challenged the ignorance of those
Who only ever saw the negative.

I cried tears of frustration
behind closed doors
when he was struggling
to do what his peers found easy.

I fought for early diagnosis.
I fought harder when the diagnosis came.
I educated myself about autism.
I became the reluctant expert in my child.



I ignored the whispered slights at the school gate.
I calmed him after unkind words from friends.
I held his hand when he wasn't invited to the parties.
I listened night after long night when he couldn't sleep.

I reassured when he didn't want to be different,
I encouraged as he picked himself up again and again.
I cheered as he made new friends
I applauded as he exceeded all expectations.

I challenged the deficit model.
I failed to accept people
telling us what he couldn't do
And made them see what he could.

I battled against the stereotypes
And confronted the false beliefs.
I taught him that he is enough,
Autistic doesn't mean less.

I am proud to be overprotective,
I have earned my stripes.
I asked for help not judgement,
We won't be back...




#PointShoot November

6 November 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 Month's featured post comes from susankmann.



Feel free to grab your featured blogger badge!





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A photograph is the pause button of life.



Link up your pictures!






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Photo Diary October

5 November 2018

Dear Friend,

I love capturing the ordinary moments and special times with my camera, looking at our life through a lens gives me a clearer focus. Here I take a look back at some of my favourite moments from the month. 

We have packed lots into October with beach days, zoo visits, a trip to Amsterdam, Leiden, bowling and I even dashed over to the UK to see my parents.

 Now over to my photo diary... Happy days!




  • A huge highlight of October was getting to see the Pandas at Ouwehands zoo. Little man had a presentation on Pandas at school so we took him to do some hands on research.
  • Saturday afternoons in Leiden, enjoying the Indian Summer with a drink on the terrace.
  • Beach time. Anytime spent at the beach is my favourite time.
  • Sharing a beautiful sunset.
  • A fabulous, fun filled morning bowling with my boys.




  • Walking Nova at the dunes, check out that amazing sky!
  • A morning with Rembrandt, Van Gogh & Vermeer at the Rijksmuseum. 
  • Exploring the stunning grachten in Amsterdam. 
  • Photos on the I Amsterdam sign.
  • Drinking cider in an Irish Bar. 
  • Halloween fun




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My Sunday Photo

4 November 2018

The energy we put out is the energy we get back!




Enjoyed this post? See more My Sunday Photo posts here...

I'm bored of the working mum debate

31 October 2018

Dear friend,

It has been a time of huge change for us as a family. Big lad started his new secondary school and I took on an extra day at work. We have all been busy finding our new norm.

Working more wasn't a decision that I took lightly. I wanted to keep my caring responsibilities at home but I wanted to put more energy into a career I love and reap the financial benefits too. I struggled with the idea of working four days. In all honesty I worried that it signified a shift in my priorities. What effect would it have on our family? Would the boys cope? Would I?

Maybe because of this inner turmoil I noticed more press attention and read a number of blog posts championing the cause of stay at home mums. Most giving highly persuasive well-put arguments that were difficult to challenge. But many that left me with a sense of guilt or shame that I am still not quite getting it right!

Do you ever get the feeling that, you are damned if you do and damned if you don't? I'm bored of the working mum debate.



Let's not forget that women have fought to have more equality in the workplace. We proved that we are competent and capable of taking on the roles traditionally delegated to our fathers.  More women are working. Today, over 70% of women aged 16–64 are employed (53% in 1971) and the majority of mothers work (74.1%).

On the face of it we have made fantastic progress. But the UK has dropped from 9th to 26th place in terms of gender equality. It seems we haven't made a crack big enough in that glass ceiling yet and support for working women remains 'woefully inadequate' according to the King's College London.

I have friends who work full-time, part-time, work from home, are CEOs, stay at home mums, stay at home dads. I love and respect them all. Many women (and men) have made sacrifices for their families whether that was giving up careers, missing out on their child's first day at school, making financial sacrifices or not being home every night to tuck their kids into bed. Each and every one have made the choice that works best for them, their families, their unique set of circumstances.

The crux of the problem for me is, whilst I am able to slip into my dad's company brogues I haven't actually managed to give up my mum's responsibilities. As a teen of the 80's I was sold the idea that women could have it all (I could be the boss in the workplace and still smash it at home).  It has taken me 20 years to realise that to have it all I need help, whether that is flexible working hours, hiring an au pair, having a cleaner or relying on family.

Why are women still arguing amongst ourselves? Whilst we are debating who has made the right choice aren't we failing to get the point. It is a personal choice.

Let's stand together and talk about the issues that really matter and that will make a big difference to women; equality of pay, representation of women in top roles, affordability of child care, flexible working hourstax on sanitary products (tampon tax), higher cost of women's personal care products (the pink tax), zero hour contracts etc

Stop making working mums feel guilty. It is all about finding a balance that works for you. I don't know if this balance will work for us. But I know that I want the support of my sisters (not their judgement) whilst I work it out.





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My Sunday Photo

28 October 2018

This was her magic, she could still see the sunset even on the darkest days...⠀



How to raise bilingual children

24 October 2018

Dear friend,

Raising your children to be bilingual seems to be quite the 'in' thing to do at the moment. I have read many articles championing the benefits of being bilingual and there has been research stating that being bilingual can help to ward off dementia but raising bilingual children wasn't a lifestyle choice for us it was a natural progression.

I am English, my husband is Dutch and we live in Holland. My son was born only one year after I moved to Holland and whilst I imagined I would be fluent in Dutch, the reality was I could order a sandwich and say thank you and that was it.

The choice was clear, I would speak English and my husband Dutch. But was it that simple? Yes & No!




I was lucky because working in an international school gave me a great bank of practical knowledge and experience and I badgered colleagues for help and advice and read books they recommended like Colin Baker's: A Parents' and Teachers' guide to Bilingualism and Steiner: 7 steps to raising a Bilingual child.

My Tips for Raising Bilingual Children:


1. Have a plan
Have you heard people say; "Kids are like sponges and they soak up language." It is a Myth. Yes given the right tools and when exposed to language from an early age children will grow up and acquire family languages but this can not be taken for granted. Our plan was One Parent One language but hubby and I have always spoken English together.  We have chosen to continue speaking English at home as it is the minority language for our boys so by speaking it together it increases their daily exposure.

2. Do your research
Family members and friends may want to give you their advice or opinion. We have had people tell us we are confusing our kids, they will mix up their languages and that we are making it harder for them or they'll have a speech delay.  Do your research, know the answers. Nod and smile.  Most of the time these people mean well but don't actually know what they are talking about. 

3. Be consistent
Don't make it easy for your children to switch from the minority language to the majority language. Our oldest son is autistic and he keeps us right! He will ask why are you talking dutch to me? He needs the consistency and has told me I don't sound like mummy when I speak Dutch.



4. Take Time
To learn a language you need time and how much exposure time is up for debate with some researchers saying you need 30% exposure time to become bilingual. For me it depends on your definition of bilingual. Pre school the boys were exposed to more English as they spent most of their time with me. Since beginning school we have had to think about exposure more, English has definitely become the minority. The boys have switched to speaking more Dutch together.

5. Think about Resources
Have lots of resources in the minority language. Our home is full of English books (probably more than Dutch) we have UK television , music and video games. We regularly Skype with UK family and friends. When the boys were younger I took them to an international play group and we spend time with English speaking friends. We go back to the UK for holidays. Language camps can also be a great idea.

6. Be tenacious
You may be given bad advice from 'experts' stick to your guns.
When my son was diagnosed as autistic we were told to bring him up as a monolingual. We ignored the advice. Special needs children can be bilingual, the language problems they have in one language will appear in the other but that won't stop them! I believe being bilingual has improved my sons understanding of the world as he has two frames of reference.



7. There is no wrong language
Sometimes my boys speak to me in Dutch. I never make a big deal of this. There is no wrong language in our house. But I am just consistent in my answer. I continue in english.

8. Don't mix language confusion with code switching.
My boys sometimes pinch a word from one language to use when speaking another as it just fits better.  The best example of this is the Dutch word "gezellig" a word that has no direct translation but encompasses Dutch culture (think Hygge). It is not because they are confused it is because the word fits better!

9. Think Long Term
Despite working in an international (English speaking) school, we sent our children to a Dutch language school. We did this because we thought long term.  We plan on staying in the Netherlands for the rest of their school life so wanted their educational language to be Dutch.

10. Be proud!
Tell your children how proud you are of them. Be enthusiastic!
Hubby and I are really proud of our boys. We love it when people comment or ask questions (polite ones of course). . The big lad wants to learn Spanish next.




This is a revised post...



My Sunday Photo

21 October 2018

“Believe me, my young friend, there is nothing - absolutely nothing - half so much worth doing as simply messing about in boats.”

― Kenneth Grahame, The Wind in the Willows


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A Glimpse into our Autism: Jealous?

17 October 2018

Dear Friend,

Yesterday she asked me:
Are you jealous?
The implication was that I was jealous of her 'normal' child.

This shocked me to the core.
I am not envious. I don't wish that my son was like hers.

My family mean everything to me. I love my boys unconditionally and I do not compare them with anyone else. They are simply and beautifully unique!




Perhaps this is more about narcissism than jealousy? Facebook is full of proud parents boasting of their children's achievements, the internet provides a huge platform for our self gratification.

I admit that I tend to avoid Social Media at report time, when the status updates can be an uncomfortable reminder of my own child's difference. But I am not jealous of another child's success!

I know that everyone faces challenges, regardless of what their Facebook profile shows
We all show what we want the world to see.

To covert what someone else has you must first be disappointed with what you have.

How could I ever be disappointed with my boy? Our successes may be different but they are every bit as significant and maybe even more hard fought.

My sons amazing strength of character, belief and tenacity make me immensely proud every single day.


Jealous does have a different connotation. It can also mean fiercely protective of one's rights or possessions.



As the mum of a special needs child I do feel jealous when:
  • My children are excluded
  • Parents assume their 'normal' children are 'superior'
  • People lack patience or understanding

Yesterday she asked me:
Are you jealous?

Why should I be?

I do  not consider your child to be 'better' than mine?

Autistic doesn't mean less.

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. 



This is a revised post.

My Sunday Photo

14 October 2018

If History were told in the form of stories it would never be forgotten...

Helmsley castle

Check out more My Sunday Photo posts here...

Growing pains

10 October 2018

Dear friends,
do you ever look at your children and think, Oh my goodness, where is the time going? I do. I have a major conflict of interests. Stuck between wanting to freeze time to keep my boys 'little' and being excited about the things they are yet to achieve. This poem is my response to the unforgivable habit of growing up. 

Growing Pains

I need your help! 
I am experiencing terrible growing pains,
It only seems like two sleepless nights ago 
That you were tiny babies, 
Looking up at me with wonder in your eyes. 
I was your world...

I am sorry,
I did not always appreciate these days.
The multiple, minute, repetitive moments that filled them
Made it sometimes
Feel like forever.

I am sorry,
Sometimes I felt lonely,
I was afraid that I was getting it wrong,
I wasted time waiting for the next milestone to come
And I wasted energy comparing your path with others.

But most of all I am sorry that
I didn't realise how with each milestone
You were moving further
And further
Away from me...



I wish with ever fibre of my being 
That I could experience one more time how...

Your tiny, soft foot fit in the palm of my hand.
I could carry you in one arm (resting you on my hip)
Your first words were spat out with pride and determination.
You pulled funny faces as you experimented with new foods.
Your warm body curled into me in bed with your feet flat against my side. 
You only covered your excited face during games of Hide and seek.
You squealed go faster during bike rides to the duck pond.
Holding your tiny hand in mine made me feel safe.
I had to rush my shower because you needed me.
My pockets were always full of your special finds. 
Going to the toilet became a group outing.
Your little face appeared at the window as I left for work.




I failed...
In the business of our lives,
To spot the tell tale signs that
Things were changing.
In my blinkered
Rush to get life done,
I missed the signs that
You were outgrowing me.

But I can't fail to notice it now... 
It hits me right between the eyes, every time I look at your long legs.
It weighs me down, when I try to lift you up.
It cuts deep, every-time I offer my hand and you decline.
It makes my tummy flip, when you refuse face painting or dressing up.
It saddens my soul, when there's no-one at the window to wave goodbye.
It cripples my confidence when you utter the words; 'Oh Mum, embarrassing."
It fills me with sadness, when you have nothing to tell me.
It says I told you so, every-time you dash out of the door without a kiss!




Now it is me who is looking at you
With eyes filled with wonder,
Who wants to ask you all the questions,
Who wants to follow you
And snuggle at your side.

Please cut mummy some slack,
Give me that occasional squeeze,
Tell me about your day,
Let me call you my baby,
Hold my hand.

Know that you will always be my world
Even when I'm no longer yours!





This is a revised post.

Pockets reference - you must read the post by occupation mother. 


My Sunday Photo

7 October 2018

The only way to be sure of catching a train is to miss the one before it.




A Glimpse into our autism: High Functioning

3 October 2018

Dear friend,

Our big lad recently started secondary school and has also made the shift from mainstream to special school. It gave me a great sense of peace over the summer holidays to know that he would be moving into an environment that is set up to understand and support children with autism. But then...

Do you think they will find him 'too normal' at this school?
He is not what I expected at all. He's really good isn't he? He is really friendly and communicative.
Yes but he is different than the 'others' you can't tell by looking at him.
I thought he was really high functioning.

To hear this from people we know and some we love shocked me.


Big lad doing a Fortnite dance on the summit of Roseberry Topping.

Our son has always been lost in this no-man's land between being 'too good' for specialist support and 'not good enough' for mainstream.

High functioning children with autism are often left out of the support scenario because there is not enough funding. We are used to fighting for the help that he needs. By moving into the special school system I hoped that the fight would become easier.

People like the linearity of a scale, we like to put things in boxes or to see where they fit and make comparisons.

Verbal, articulate people with autism are often placed at the top of the scale and labelled as high functioning whereas Non verbal people with autism are often placed at the bottom and labelled low functioning.

But...

Autistic people can not be put neatly into a box or applied to a scale because autism is a spectrum disorder.

To use labels like 'normal' or 'high functioning' is not helpful to us because it belittles the difficulties that my son faces every single day. People assume that he won't need many or any accommodations because he is high functioning or looks or acts normal.

Functioning labels are not an accurate representation of the help that an autistic person needs.

High Functions does not mean, doesn't need any help!







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. 

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