Merry Christmas

25 December 2017



Structure

20 December 2017


Dear friend,

Yesterday he asked me; Mum where is my timetable?

It is December. This is a month full of change. It feels like almost nothing remains the same.

There is a tree in the house, there are lights and decorations. New clothes and food. People visiting. More social functions to attend. Special evenings at school.  The list is endless...

Having autism at Christmas time can be enough to make him want to hide away, to retreat into his computer world.


I am mindful of this need to retreat and we allow him to do that when he needs to...

But I also want him to be part of the celebrations.

I do not want my son to hide away. I do not want his experiences or opportunities to be limited.

I have to trust my instincts and I have to listen to my boy.

So we make a timetable and we plan our time over the holiday period. We keep surprises to an absolute minimum.

Our Christmas will be just as special but perhaps, less busy, more structured.

Yesterday he asked; Where is my timetable?



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 Week #37

19 December 2017

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 will be the final #PointShoot of 2017. I will be taking a little break over Christmas but I hope you can all join me again on 9th January and I look forward to seeing all your gorgeous Christmas snaps.

A huge thank you to all of you who have joined in #PointShoot this year.


This week's featured post comes from memeandharri


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#PointShoot Week #36

12 December 2017

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 Susan K Mann


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Losing my shit!

8 December 2017

Dear Friend,

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.



I very rarely open up to any of my friends or colleagues or even family.

Why?

Because it feels disloyal to my son. It feels like I am letting him down, loving him less, failing...

The conflicting emotions rattle around inside my brain making me feel sick with worry and guilt.

Really the problem is I love him too much. I feel it all too much. I want to shield him too much.

I need to let go... But that isn't an option because for now I am his advocate, his voice, his anchor.

Yesterday I lost my shit and that's ok!


This is for any parents out there who have also lost their shit. You are not alone!

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 #35

5 December 2017

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 Four Acorns.


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One moment in time with Kerry Jordan

1 December 2017

Welcome to one moment in time, a guest posts series, where bloggers share the stories behind special or significant photographs. Welcome to Kerry Jordan from Crazy, Messy, Glorious. A huge thank you to Kerry for taking part, I love getting to know my fellow bloggers better and I love how we are going International with One Moment in Time too. It is super exciting that blogging can open the world to us like this! Now over to Kerry...


Our beach photos are my favourite. They're rare, because we don't get much beach weather here on the East Coast of Canada. The bright sunlight and uncluttered landscape is a mamarazzi dream. Also, my husband and the beach look great together. He used to be a surfer, ya know.

This photo, though. It really soothes my soul and here's why.



Our daughter was born with hip dysplasia which means that her hip joints didn't form properly during pregnancy. She had surgery at one and a half. When other kids were doing tummy time, she was in a cast from her chest down. All that worry and fuss, the scary hospital stays and the lack of mobility formed her personality. At six, we're struggling to love the surliness out of a very anxious and pessimistic little girl.

Still, it's not hard to count the blessings that came from this. Our prayers were answered and that painful time in our lives was brief. Our daughter's legs are just about normal now and she's active and plays sports as well as other kids her age. Seeing anxiety take over all our lives pushed me to get help to face my generalized anxiety disorder. That's life changing for all of us. Living with uncertainty, trusting that we will get through bad times, and not letting fear make decisions for us are all lessons that my husband and I took from this experience. The number one thing that grew out of all this was our compassion. We're learning to love ourselves and each other when it's hard.

When I look at this photo, besides being thankful that our daughter can walk on the beach, I'm struck by the symbolism. Standing on an endless expanse of shifting sand and water, Daddy and daughter practice tossing a big yellow happy face. She catches it. It's awkward and she staggers forward, before heaving it back with all she's got. It's about giving and taking. It's deliberate, not effortless at all. Every time she throws the ball, Daddy has to chase that happy face and bring it back before the waves carry it away. When she throws that ball and we catch it, oh the joy! Such a simple thing, yet so heavy with grace and love.

You can read more from Kerry at: BlogTwitterPinterest.


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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Blanket statements

29 November 2017


Dear course leader,

Yesterday you told me that all autistic people should be in mainstream education. 

I could feel the tears prick my eyes and catch in the back of my throat and although I wanted to challenge you on this I couldn't as I knew I was going to lose control of my emotions. I did not want to do that in a room full of my peers. Now I feel sad, angry, disappointed that I missed the opportunity...

I missed the opportunity to say that I think you are wrong! 

You can not make blanket statements about people with autism. You can make a statement based on your child, your experience but you can not talk for everyone!

It seems strange that I am disagreeing with you, especially as I fought to keep my son in mainstream education. I strongly believed that I was right to go against the professional advice and leave him in his primary school after diagnosis.


We were lucky, we had an amazing school with a very supportive head and Special Needs team. My son was in a relatively small class with children who accepted him from the start and he loved it. He also received excellent additional support.

But now it comes to looking for a secondary school, our choice is simple...

The best place for our son is a special school for children with autism.

Do not think we have reached this decision lightly. Like every step we have taken on this autism journey it has come with deep thought, contemplation, discussion, professional support, sleepless nights and I am certain the appearance of more grey hairs.

We have made this decision based on what is best for our son, at this moment in time.

We have visited a few secondary schools and asked about their care programs for children with autism. All of them advised us to take our son to a Special school for autism because they could not guarantee the level of support he needs.

Today we began the process. We filled in the initial form for entry to secondary. My heart beat just a bit harder as I added my signature. There is a lot riding on this, my sons future...

And sadly we are not guaranteed a place!

Butterfly with coloured jigsaw pieces pattern with text
Yesterday you told me that all autistic people should be in mainstream education.

I missed the opportunity to say that in our experience you are wrong!

You can not make blanket statements about people 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 but many carers are faced with this dilemma. 

More autism awareness posts...

#PointShoot week #34

28 November 2017

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 my lovely friend Mackenzie Glanville



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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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How to reduce Christmas stress

22 November 2017

Dear friend,

Our rose tinted memories of wonderful Christmases past, often lead to unrealistic expectations. We get caught up in the need for a perfect tree, perfect dinner, perfect presents etc all contributing to an overwhelming feeling of stress. Christmas takes a lot of work. 


Just mention the word Christmas in October and you can will see some people visibly wince. According to the Stress Management Society, one in 20 people considers Christmas more stressful than a burglary, and over half of Britons will have had an alcoholic drink before lunch on Christmas day – to try to cope with the stress.

There are many demands on your time but remember that it is your holiday too. It is completely reasonable that parents want to relax and enjoy being in the moment with their family. After all isn't that what Christmas is all about?




Talk: Make sure that you have conversations with your family and friends about everyone’s expectations of Christmas well in advance. That way you can make compromises that suit everyone. Don't be frightened to say; NO!

Planning: Be careful not to plan too much!
Advent calendars can help kids with the lead up to Christmas and we also use a month calendar with key events noted so that we can cross off the days.

Parties: Christmas parties and extended time with family and friends is special and should be treasured but some children may need support.
Encourage children to socialise initially but have a survival kit to take with you. (This could include a book, music, computer game/ipad, drawing pad and pens) Give your child a timescale e.g. We will leave at 8, but be prepared to leave earlier if necessary.

Decorations: Don’t go overboard on decorations: keep them out of kids bedrooms entirely.
If you are away for Christmas (hello my EXPAT readers) then why not focus on one area of your home or on one thing e.g. the tree.

No Bribery: Remember some kids take things very literally: Autistic parents do not have the advantage of 'neurotypical' parents who can use an element of blackmail to ensure their kids are good before Christmas. The big lad had a lot of stress around being good (as in his eyes he hadn't been good enough) and this lead to several sleepless nights. Many 'neurotypical' kids also find this pressure too much.

Routine: Stick to your normal routine as much as possible. Try to build in some quiet time before bed. But be prepared that kids may not be able to sleep on Christmas Eve, relax the rules a little and let them stay up a bit later.

Shopping: Set a budget and stick to it! Take a list and check off as you go along.
If you hate the Christmas rush then the kids will, leave them at home with a friend/relative.

Gift giving: The anticipation of a day when you get lots of new stuff can be totally overwhelming. Some children find it too stressful having presents under the tree and some children find too many presents overwhelming. Writing letters or making wish lists helps. You can also stagger your present opening. Set up some gifts so that they are ready to play with.

Food: A traditional Christmas dinner is a lot of work and many people are choosing to eat out or eat on Christmas Eve instead so Christmas day is free to relax. Why not share the work by asking guests to bring a dish?

Exercise: Get out of the house. Exercise reduces stress and keeps family strife to a minimum.

Relatives: We all have those annoying relatives who were obviously perfect parents. Nod and smile sweetly, or better still change the subject when they start to give you advice. Say, Can you excuse me for a minute, walk away and don't look back...

Breathe!

Have a stress free Christmas!



This is a revised post.


#PointShoot Week #33

21 November 2017

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 TippyTupps



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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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Hope

17 November 2017


Dear friend,

Yesterday he asked me: Mum I am going to the school for autism aren't I?

The question made me freeze in my tracks because I don't have an answer.

I want more than anything in the whole world to be able to say Yes! But I can't...

We attended the open evening at 'the school' the second one we have attended this year (we are so desperate to show our commitment). We watched the same promotional video and I tried hard to sink into my stool as I felt the tears prick my eyes.



Everything seemed to be taunting me; small class sizes, specially designed building, trained staff, purposefully developed timetable, split playtimes, homework support... I could go on.

You don't need to sell your school to me. We can see that for our son, this is the perfect learning environment.

But... next comes the hard bit. There are only 55 places.

I look around the hall frantically trying to count how many people are here. 200-250 adults (half that because most are couples) and we have around 100 children. It isn't hard to see that there are not enough spaces, lots of families and children are going to be disappointed.

The questions roll in, thick and fast. You can hear the desperation in some parents' voices. I can't even ask my question because I just can't focus and I stare at hubby in shock (and pride) as he does.

We must fit the criteria for the school, we must sit in the catchment area (thank god we do) beyond that the future for our son is based on being picked out of a hat.

Almost every day he asks me: Mum, I am going to the school for autism aren't I?

What can I say? I'm sorry son, we don't know yet. It depends if your name is drawn or not. No, all I can say is we hope so...

I can not put into words how stressed I feel.

Autistic children need to know what is happening. They need stability, structure, reassurance to make them feel safe. This system we are stuck in does not provide that.

Quite simply this system is failing our kids.

The right kind of school care for your child does not seem like a lot to ask for! Surely all children deserve the best education for them.

I want more than anything in the whole world to be able to say; Yes son you are going to the school for children with autism! But I can't guarantee anything, I can only hope...




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 but many carers are faced with this dilemma. 

More autism awareness posts...

#PointShoot Week #32

14 November 2017

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 Oh Pretty City.



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The one with the mobile phone

8 November 2017

Dear lady,

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.

In most of the photos I take of my big lad he has his trusty mobile in his hand.

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.
Butterfly with coloured jigsaw pieces pattern with text

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

His trusty mobile has enabled us to get out as a family and explore new places.

I don't pretend to be a perfect parent, I am a real one! I am not living my life to please others I am celebrating it for what it is.

I will use whatever tool possible to connect my son with the real world and reduce his anxiety. You see my son has autism.

Yesterday I heard you talk about us. I heard your disapproval but I don't care because I know that being a parent is the easiest thing to have an opinion on but the hardest thing to do...

Enjoyed this post then read more autism posts here...




#PointShoot week #31

7 November 2017

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 Mummy Here and There.



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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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Flying with autism

3 November 2017

Dear friend,

A year ago, I was prompted to write a blog post and an email to Schiphol airport asking for assistance for autistic fliers. A difficult experience flying alone with the boys had left me feeling disappointed and asking the question; Who deserves priority?

Whilst patiently cueing for passport, I watched priority travelers whizzing through their separate section...
We waited while people, who should know better, jostled for position...
I don't want to highlight my boys disability. I just want to reduce his stress (and truth be told mine too). How hard would it be to make invisible disabilities a priority?
Surely we have got our priorities wrong when only those who can afford to buy the best treatment get it?


Much to my surprise I received a telephone call from customer support services and spoke with a really lovely man named Kees Hoekstra (father to an autistic daughter) who took on my complaint but also went further. He has worked very hard to improve the flight experiences of people with autism at Schiphol.

Kees introduced me to the DPNA code and we were the first Autistic family to try it out last year. (You can read about our experience here.) As an EXPAT family we are regular fliers and have used the DPNA code several times over the last year.

How is support for autistic fliers working a year later?




It is worth noting that different airports have different systems and it is important to visit their websites and find out what the rules are.


KLM: Schiphol airport: There is no information on the Special assistance page of the KLM website (or on the Schiphol website) for invisible disabilities but the DPNA code can be used. At least 48 hours before the flight you must ring KLM Cares and asked for the DPNA (Disabled Passenger Needs Assistance) code to be applied to your flight.

On the morning of your flight you must present to the assistance desk at Schiphol.  The member of staff will ask what type of support you require. Be clear, do not just ask for Autism support but be specific e.g. We require help through the queues particularly at security. You will be allocated a member of staff who will take you to your gate.

If you speak to the staff members at your gate, they will ensure that you can board the plane first.

On return to Amsterdam we have experienced a few teething problems. Firstly there wasn't an assistant waiting for us in the terminal but more recently the cabin crew have asked if we require assistance and have arranged someone to greet us. During the last flight the crew weren't sure if we should take the bus to the terminal or not which resulted in a long wait.

Newcastle airport has worked with the North East Autism society to improve their services for autistic people. Autistic passengers can download an Autism Passport. You must present yourself at the assistance desk but can then proceed alone. At Newcastle all staff are trained to recognise the passport and then fast track autistic passengers through the priority lanes and the queues at security. You must keep the passport visible (hold it up). You are advised to get to the gate early so you can board first.

Leeds Bradford Airport together with Leeds Autism services have produced a guide for autistic passengers. At Leeds Bradford they use lanyards for passengers with invisible disabilities. All staff are trained to recognise the Lanyard and (as at Newcastle) passengers use the fast track system to bypass all queues. If you speak to the staff members at your gate, they will ensure that you can board the plane first.


I am absolutely delighted to see airports adopting these changes as they are making a huge difference to people with autism and their families. In my son's words...

 Mummy I really don't like the airport it is just too busy and noisy but staying out of the queues is so much better, I feel a lot less stressed!

I would love to see all airports adopt the lanyard or passport system. I prefer to have a visible identification method for invisible disabilities as we have had some other passengers make comments or stare at us when we have bypassed the queues because they don't realise why. Being able to hold the passport in a noticeable way (wave it at rude people) can encourage them to be more patient.

Having an identification method also means we don't need to rely on waiting for staff to arrive or worry about how our son will deal with a stranger assisting him (although all staff have been amazing!) We can go at our son's pace through the airport but using the fast track/priority routes so the queues and his stress are significantly less.


Thank you to all of the people who have worked hard to set up these systems and make real changes for autistic passengers! I am so glad I wrote that email a year ago because our experience of flying is so much better! 


One Moment in Time with Amy from Mothers Mind

1 November 2017

Welcome to one moment in time, a guest posts series, where bloggers share the stories behind special or significant photographs. Thank you to Amy from Mothers Mind for joining me this month. 


This photo is probably one of the most precious things I own, it is the last photo taken of my Dad before he passed away. This was Father’s Day 2008; my Dad had just returned from golf and was putting together the bird table I had bought him. The bird table now has pride of place in my own garden.




When this photo was taken my Dad was being treated for Pancreatic Cancer, he was 6 months into a palliative care plan that seemed to be effective, the tumours were shrinking and his pain was under control. I can remember the conversation in the garden when this photo was taken - we were waiting for my sister, her husband and their 3-month old daughter to arrive, my parents were making plans for a holiday in September, talking about going to Spain to stay in a friend’s apartment.

We had hope.

Less than five weeks later my Dad passed away.

My love for this photo is not just because it’s the last one taken of my Dad, it’s because it captured a moment of hope during the darkest of times.


Thank you so much Amy for sharing such a deeply personal story with us and I just loved your beautiful message of hope!

You can read more from Amy here...

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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