A Glimpse into our Autism: 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.)


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Week in photos #10

27 November 2017


Dear Friend,

Welcome to my Photo series #PointShoot. A look back at our week in photos. I love capturing the ordinary moments and special times with my camera, looking at our life through a lens gives me a clearer focus.


The word of the week has to be germs. Poor hubby started off first and then rather kindly passed it onto everyone else. Big lad was sent home from school on Thursday and Little Man on Friday.

Poor hubby had to take over the care even though he was sick because I had parents evenings this week. Typical!

This week also saw my rebrand. I felt the blog needed a change of name to match my new focus. I am happy to announce that Diary of an Imperfect Mum is now Spectrum Mum. After more than 3 years of blogging, Imperfect Mum just didn't seem to sit well anymore. There are still a few things to iron out, including my redirects but despite all the hard work I am glad I made the move.

We had a quiet weekend to help the boys kick those germs. It enabled me to get some jobs done at home and to make the Surprises with the boys for their Sinterklaas party at school. Little man wanted a cat and big lad a Nintendo Switch. It was a challenge for my meagre crafting skills but they turned out well. (I'll add a picture soon.) I also managed to get some Sint/Christmas shopping done online.

On sunday morning I awoke with a really sore throat but was determined to get out for a walk and the beautiful sunshine and clear blue sky made me feel tonnes better.










Happy Days!

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.

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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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Week in photos #9

20 November 2017

Dear Friend,

Welcome to my Photo series #PointShoot. A look back at our week in photos. I love capturing the ordinary moments and special times with my camera, looking at our life through a lens gives me a clearer focus.

This week has been tough, really tough... I lost all motivation at the start of the week and needed a boost to get me going. Big lad had a few problems at school that required sorting out quickly (Kids can be so mean) but we are very lucky to have a supportive head. 

On Wednesday we attended the open afternoon at the secondary school we want for Big Lad. He loved it! Now we have to hope that he gets a place... It is really scary to think that your child's future rests on being drawn out of a hat. 

The working week flew by as usual and I was happy to see Friday arrive for a bit of peace, relaxation and family time.

Saturday started with a bump as we slept in and had 5 minutes to get our little man to football. We also had an exciting day because of the arrival of Sinterklaas in Holland. First we watched on the television and then saw him arrive in our village on a double decker bus. The boys and I snuggled up in bed together and watched Strictly, on Saturday night, which was bliss. 

On Sunday we headed out for a bit of beach therapy, it was a windy day but the sky was beautiful and the boys loved splashing in the foam. We finished off our weekend by leaving out our shoes for Sinterklaas...






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A Glimpse into our autism: 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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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 pictures!










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Week in Photos #8

13 November 2017

Dear Friend,

Welcome to my Photo series #PointShoot. A look back at our week in photos. I love capturing the ordinary moments and special times with my camera, looking at our life through a lens gives me a clearer focus.


It was a great start to the week. I had a little blog makeover with a new theme from Fearne Creative Design. I found them on Etsy and the service was excellent and really fast! I love the new look it is so clean and easy to navigate. I took the opportunity to reorganise the blog and refocus on the things that I am really interested in. 

I turned into a house mouse at the start of this week as I spent most of my time cooking, cleaning and also doing some work at home, only venturing out to walk the dog. I have been enjoying the cosy Autumn evenings.

On Wednesday afternoon we managed to squeeze in a beach walk. It was a beautiful afternoon and really quiet, ideal for little man to take over the dunes, rolling down and running up over and over again. He came home looking like a sand monster.

I can't believe we have completed the 3rd Week of half term, it is flying by! We have even started to use the C word at school.

The word for the weekend was celebrate as we had two birthday parties to attend. It was great to spend time with family and friends. The wine flowed and there were plenty of laughs. In between the celebrations we visited Leiden and a Christmas show. Happy days!






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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Instructions: Select all code above, copy it and paste it inside your blog post as HTML


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!







Instructions: Select all code above, copy it and paste it inside your blog post as HTML

Week in Photos #7

6 November 2017

Dear Friend,

Welcome to my Photo series #PointShoot. A look back at our week in photos. I love capturing the ordinary moments and special times with my camera, looking at our life through a lens gives me a clearer focus.


We've had a week of sickness, hubby has one of those irritating coughs, my endometriosis has been really playing up and little man had tummy pain and had to have an afternoon off school. It reminded me of my dad, as when my brother or I were sick, he always arrived home shouting "Bring out your dead!"

We got over the illness only to be struck by an emotional tidal wave as events prompted us to have the Father Christmas discussion with little man. There were lots of tears as well as anger, recriminations and huge disappointment. I was left feeling totally deflated by the end of another era, this growing up lark is happening far too quickly for my liking!

I was quite happy to celebrate the end of the working week with a glass of baileys...

This has been one wet and miserable weekend here but we haven’t let the weather dampen our spirits. We managed to fit in two walks by taking shelter under the forest trees. We spent Saturday night with our friends. The wine flowed and it was a really ‘gezelig’ evening. The Autumn ambience has really set in and on Sunday afternoon we took full advantage by turning up the heating and snuggling under a blanket catching up on Strictly and the amazing Blue Planet.








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! 


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