Helping an autistic child cope with bereavement.

24 April 2015

Dear friend,

Having a child with autism has certainly taught me to be prepared. But can you ever really be prepared for someone's death? How do you explain death to a child with autism?

For a long time the big lad held the belief that all people died when they reached one hundred. I am not sure where that belief came from but I must admit that I didn't actually do very much to challenge it. Then something happened. My father was very sick and I had to return to England really quickly.

We explained this carefully to the big lad and he had only one simple, clear question.

Is grandad going to die?

Many of our deep conversations come out just before bedtime. Big lad has a hard time getting to sleep when his 'brain is too full'. He often asks me if I am coming upstairs. A cue that he wants to talk something through and one of the few times I can sneak cuddles under the duvet with him. I cherish these moments. I can feel a real connection with him. I can feel him beginning to make sense of this puzzling world he is in.

How is it with grandad? I answer the only way I know how. Honesty. Facts. No emotion. Rather like the amazing nurses at the hospital. I tell him not to worry, he is feeling a lot better!

That week we rang nana. The big lad spoke to her and then I heard:

Nana you are very old aren't you. When are you going to die?

I snatched the phone off him.

Luckily she hadn't heard!

Ok, obviously I still had some work to do!

But actually this opened up the discussion.

We talked about what happens when we get old.

We talked about how long people live.

We talked about changes in hearing, sight, ability to walk, remembering things.

I explained, I prepared...

When people die you don't see them anymore.

Nana died a few months later.

The psychologists have always told us to use situations to explain emotions.

I did not hide my feelings or emotions in front of the big lad!

I did however explain to him why I was sad.

I told him it was ok to cry.

I explained that we would never see nana again and that this made me feel sad.

I explained that it is normal to feel sad at first but that it would get easier and that I would remember the happy moments.

When someone you love becomes a memory, the memory becomes a treasure.

My husbands immediate response was that the children would not attend the funeral. Mine was more measured as I believed that the boys needed some closure. We discussed our options with big lad's psychologist. The compromise that suited us best was that the boys were looked after by one of my best friends during the funeral but that they attend the reception afterwards.

It turned out that I was worrying about the wrong child.

When we arrived at the reception. The little man asked, is nana in there?

He then asked his uncle if nana had looked like this (cue zombie face) when she died.

A few days after the funeral, at bed-time, the big lad asked if we could talk.

Why do people have to die?

What is heaven like?

Is nana still old there?

Is she still sick in heaven?

Will you be old or young when you go to heaven?

If you are a child in heaven how will I know you?

He had obviously been thinking deeply about this.

These are the things that were really worrying him and right up there was being seperated from me.

Another example of how autistic children do make connections, they do feel emotions.

Then he hit me with it.

I don't think that heaven can be the best place because I think this is the best place, with you and daddy and little man, here.

I couldn't breathe...

I wanted to capture that moment, that feeling of love, for ever!

Who was helping who here?

When you teach a person with autism they teach you!

You can find lots of information on the internet about explaining death to children.

When dealing with death and bereavement:
Try to stick to you child's routine
Be clear. e.g. you will not see X again. (Not. X went to sleep.)
Use past experiences e.g. pets dying.
Be prepared for behaviour changes e.g. aggression or rigid adherence to routine.

I found some information for teaching autistic children about bereavement at the National Autistic society website and here:

How to explain death to children and young people...

Below are some more links to information about helping children deal with bereavement.
Talking to children about death.
Helping your child deal with death.
Parents tips, death and grieving.
Helping kids with autism spectrum disorder navigate bereavement.

When you are dealing with your own grief it can be very difficult to answer your child's questions. But it is essential that you do for their peace and yours.

You never know they might end up teaching you a few things too!

I hate Birthday Parties!

17 April 2015

Dear friend,

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.

Trusting, open and unspoilt.

He organises his own play and often arrives home after school with a friend saying we want to hang out. But he is happy to play with his brother or to be alone and he tends to play with one good friend.

In hindsight, perhaps I should have been more proactive? Encouraged the big lad to invite more friends to play after school. Networked more with the mums. But as an expat learning the language, I find this difficult and life is busy... I work and the boys have swim lessons and therapy. Time is short!

There have been several reports in the news and on social media involving autistic children who have had disappointments on their birthdays. These have ended up good news stories with amazing, kind hearted people making the child's birthday one to remember, sports people, police and fire departments have even got in on the act. Amazing stories but...

Why can't we just support each other, why do we need the help of kind strangers? What has happened to our community?

I spend most of my time and energy advocating that my son is treated like everyone else, that he is included, accepted. Stories like this show me that we still have a long way to go!

We assume that people 'get it', understand the challenges faced by parents of special needs kids. But can any parent really understand how it feels to watch your child struggle to do the things that their child takes for granted? Whether that be, make friends, kick a ball, read, write a story or even speak.

Both my kids have had disappointments.

But when you have a child with autism the problem is exacerbated. It is simple he doesn't get invited to many things.

This week the big lad had a massive disappointment as someone that he considered a close friend didn't invite him to his party.

How do you help your child deal with the disappointment of rejection?

When the parents of the party giver are also 'friends' then it hits you hard!

It is more proof that autism awareness does not lead to Autism acceptance even among people you thought were friends.

I am beginning to hate birthday parties because for me they signify, disappointment, rejection, non-acceptance. It is a reminder that my child is different, that he doesn't quite fit in.

I only hope that, people begin to realise that being a friend to someone a little different can be amazing too!

Losing teeth

3 April 2015

Dear friend,

This week we had a major event in our house. The big lad discovered a wobbly tooth!

As a teacher I have never underestimated the enormity of loosing teeth for children:

Everyone needs to hear what has happened and the tooth must be examined properly. It should be placed carefully into a tissue and wrapped in cello tape. Finally it should be set somewhere safe and handed over to the child at the end of the day. It must be treated like a special gift because don't forget, later this will be rested lovingly and excitedly under a pillow in readiness for the arrival of the tooth fairy.

Loosing teeth is one of life's key moments, a right of passage, a sign that our children are growing up. But what happens if the experience scares you, makes you feel unsafe?

I must admit, I love these parenting moments. The bits where you get to swoop in like super mummy and rescue the child in distress. You get to prove you're worthy of the role of mummy. Your child needs you!

But sometimes autism has a habit of interfering with my super mummy performance. It tends to throw in a few curved balls.

Is there blood, is there blood?

What happens if I swallow blood?

What happens if I swallow my tooth?

Well it wouldn't be the first time!

Is there blood?

(Yes there was, but I didn't tell the big lad that.)

Any parent knows the importance of calm and swift action in these situations. However, something strange tends to happen inside a parents brain when they see their child bleeding. It fires off chain reactions in our neural pathways and turns most of us into Mr Bean.
But I can handle a tooth!

I am calm. I examine. I explain. I administer love.

He calms. He listens.

Oh yes, I am Super mummy!

You probably think it is weird so much stress over a wobbly tooth. One small, wobbling tooth!

But this is it...

This is how autism affects your life!

It can make these normal, everyday situations huge and scary.

It throws you that curved ball.

It can make small things seem enormous!

And this experience shows how far we have come. How far the big lad has come.

Because previously it would have been a very different story!

He is learning to be less scared, less panicked by changes and I am learning to stay calm and breathe.

Next stage is to navigate the tooth actually coming out.

God I hope he doesn't swallow it...

He asked me what would happen and I told him it would come out in his poo.

Big mistake?!

Now I have visions of him (or indeed me) searching for that bloody tooth.

Monday 6th April. Tooth update.

No fuss, no drama, no problems.

The tooth came out whilst the big lad was brushing his teeth.

Papa put it under his pillow and the tooth fairy remembered in a panic at 6.15 when she heard the kids waking.

Panic ensued but she made it.

One happy boy!

Our nana

2 April 2015

Dear friend,

When I learned that my nana was dying lots of memories started to tumble into my head and I started to write them down as I didn't want to forget anything. Then I read an excellent blog post by Hands free mama, The life of the party is closer than you think. It inspired me to write this eulogy for my beautiful, spirited Nana. Although this is deeply personal I have chosen to share it as I wanted you all to know what an amazing woman she was.
I was honoured to read this at her funeral.

Our nana. 

Glamour personified:  
never without your Jewellery, rouge or lipstick. 
A cloud of perfume. 
Kisses that smelled of pressed powder. 
And left a lasting lipstick mark. 
Hugs that enveloped you in their warmth and safety. 

You were the party... 

Sleep overs.  
Toffee making.  
Licking the bowl. 
Playing frustration. 
Watching the sullivans on TV. 
Flannels and Palmolive soap.
Tucked up tight in cotton sheets, clocks ticking loudly. 
Nana's magic bag: full of favourite things... 

You were the party... 

Queenie queenie who's got the ball. 
The colour green. 
The smell of fadgies. 
French fancies & battenburg cake.  
Never missing the icecream van. 
Feeding the dog grandad's chop and choc ices.  
Beer mats in shoe boxes and rubber collections kept in a biscuit tin. 

You were the party... 

Jumping on the bus. 
Trips to doggy market and Redcar. 
The club trip to Scarborough or Whitby.  
A plastic bag full of 2ps. 
Tea dances. 
Going down the club.  
Cigarettes kept in a floral purse.  
Housey books and dabber pens. 
Always sweating for one number. 
A pint with a half glass. 

You were the party... 

Late night telephone calls. 
Family Parties. 
Sing a longs. 
Hand written Letters with 5 pound notes hidden inside.  
An open Catherine Cookson novel.
Sunday mornings: Music playing loudly as you cooked the dinner.

You were the party... 

Popping in for a cuppa. 
"I'm in here cock!" 
Heating set to tropical. 
Tv volume on deafening. 
Videos for 50p. 
Family photos everywhere! 
Never forgetting the kids Pocket money.
Purses hid under the unit you had to get out with the fire fork! 
Offering everyone a glass of 'something' at 11.00. 

You were the party... 

What you lacked in stature  
You more than made up for in personality.  
Your energy and vitality shone. 
You taught all of us to live life to the full,
And enjoy every single minute.  

Always a twinkle in your eye!   

You were the party! 

Thank you, nana! 
Thank you for the fun and for the never ending love...

Forever in our hearts,
Catie, Gert & boys x

Photography @My_Dutch_Angle

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