The ten types of selfies I get with my son with autism

This is a tale of the very real issue of trying to get a selfie photograph of me and my son. Isaac, aged 7, has non verbal severe autism. Here are my top ten attempts at having out photos taken together. I won’t be offended if you laugh…some of you may even relate!

1. The ‘climb all over mum’ selfie. 

2. The ‘iPad is of more importance’ selfie
3. The ‘screaming’ selfie. 
4. The ‘he did it himself’ selfie.


5. The ‘EEG’ selfie.


6. The ‘spaced out’ selfie.


7. The ‘do you want a piece of plastic toast mum?’selfie.


8. The ‘I’ve just pulled mummy’s glasses off and find it funny’ selfie.


9. The ‘surprise mum from behind’ selfie


10. And last but not least the standard ‘look at the camera and smile’ selfie.


We totally nailed that one Isaac!

I haven’t included the ‘won’t stop flapping so we only get blurry pics’ selfie or the ‘I like to be naked for pics’ selfie or the 3,413 blank screen pics he took before he worked out to press the forward camera button when the phone is on your knee either!

After 2458 outtakes I shall finish with this ‘I just got new glasses so mum wanted a selfie’ one which actually is pretty ok considering.

*Please note no mothers or sons were harmed in the making of this blog.

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Ten signs I dread as an autism parent

I have two children with autism. Some days are wonderful, calm and peaceful but some days my children become so distressed over something and there is very little I can do to calm them down.

This week for example I took my son to the local store with me only to discover his favourite lift was ‘out of order’. It took hours for him to get over that sadly. Then today I had to take him for an appointment at hospital but on our way back to school one of the roads was closed and I had to take a diversion. This change caused so much upset it took three members of staff to support him back into school.

thise are just two examples of how a sign can cause so much upset to my children, even though one of them still can’t read. I try and avoid the following ones as much as possible.

1.
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After today I will be checking websites before trips as this simple red road sign caused so much upset and confusion. Rigid thinking means my son expects to go the same way every time and this is just not allowed!

2.

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Sticking with road signs this one particularly makes my daughter cry! Her sound sensitivity means that even with ear defenders on the noise of people digging up a road is more than she can bear.

3.

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My final road related one is this.

Stopping or waiting is not something either of my children find easy at all. This little light has caused so much screaming, yelling and biting in my family. They may have to learn but the less of these I have in any journey the better off we all are!

4.

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So we did the social story, the now and next board and then navigated the journey only to get there are find this! This one has to be one of the worst signs any parent sees when they have excited, prepared children. Sometimes, just sometimes, Google is wrong and opening hours are NOT as advertised. The fall out from this one is BAD!

5.

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They want one thing for their birthday, just one thing. And all you see is this! Or in my daughter’s case they have a very limitted diet and only eat a certain brand of a certain spread. But the shop shelf has this. This one sends me into as much of a meltdown as my kids!

6.

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Sticking with the food theme. So you stocked up on the few things they will eat but finally you realise you need to restock…and you see this small but terrifying label on the top corner! Run for your life…this is as major as a packet changing in my house! Don’t kid yourself…they will notice!

7.

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Please be quiet? Are you serious? Have you tried to keep any child quiet anywhere, let alone a non verbal child with autism. My children make their presence known and find it pretty much impossible to keep either of them silent.

8.

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This sign is so hard to explain. Unfortunately my children live in the age of instant wifi and can not yet work out why anywhere would not have free instant access to the Internet. Neither of them can understand why apps don’t work in certain places or why they can’t keep watching you tube in the car. We have had lots of outrage over this one!

9.

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Sticking with technology this little red face has in turn made my little darling’s faces turn a similar shade. I have nightmares about this little icon! For those who don’t know this one means you tube has stopped working…in other words the world has ended in my house!

10.

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And finally, you may wish to look away from this one as the sight of it has brought many an autism parent to tears. The meltdowns this has caused can not be counted. Apparently technology should have endless power and energy…rather like they expect me to as an autism parent too.

Looking at these signs has driven my power to less than ten percent too, so I will leave you with my favourite sign ever as an autism parent:

Race you there!

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The day he chose his own birthday present

imageI had waited for this day for many years.

He has yet to tell me what he would like for Christmas or a birthday. He has yet to speak, period. He isn’t able to look through a toy catalogue and mark the things he likes. He has no concept of adverts and no interest in toy shops other than the automatic doors or the lift.

Birthdays and Christmas are therefore hard. We basically guess what he might like based on observation and knowledge of his sensory preferences. Sometimes we get it right. More often than not we completely waste our money on things he never goes near.

If we find it hard how much harder do relatives and friends find buying for a child who never plays with toys?

So at his birthday party this year lots of people opted to give him money. And I totally understood why.

But that left me with an even bigger problem: now we HAVE to do something and get something for him.

I was stuck.

So in desperation I decided to venture into a shop with him. That meant pushing him beyond his comfort zone of the automatic doors at the entrance. It meant picking a time when the shop would be most quiet, not only in terms of people but also in terms of tannoy announcements, music, and noisy technology. It meant risking a huge public meltdown.

I tried to prepare him. It’s not like I can tell him he has birthday money and he can come choose a toy. He has no concept of what a birthday is let alone what money is. I am not entirely sure he even realises what a shop is? So I kept it simple and told him he was coming somewhere special with mummy to get something he would really like.

He loves his mummy does that boy.

So I searched for his socks and shoes and lifted him into the car. At seven this gets harder by the day. I took him to a shop we have been to many times before. The whole journey I kept repeating that today we were going into the shop and he could chose himself something nice. As I glanced at him flapping in the mirror I thought for a moment he may actually have understood me.

I think I was right.

He took my hand. He walked right through those beloved doors and he smiled and laughed and flapped like he had just won a coveted prize.

Then he stopped right where he was. He picked something off the shelf and he took my hand and dragged me to the checkout.

I was so utterly in love with him. I was bursting with pride! I wanted to shout about this magical achievement to the ends of the world.

My son has just chosen his own birthday present!

I had no need to worry about the cost. Or wether he needed batteries. Or even if I needed scissors or a screwdriver to get through the packaging. I never even needed to purchase a carrier bag!

He held his prized possession all the way home in the car, turning it, licking it, and smiling at it.

He knew he had chosen well. And so did I.

I actually wonder why I never thought of this before…

After all surely every seven year old wants a tin of baked beans for their birthday present!

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Just don’t ask my neighbours!

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Most of the time I am happy that people don’t know what really goes on behind my front door. I live in a quiet dead end street in an end terraced house with neighbours either side of me. Ordinarily that would be fine but I also have two children with additional support needs. Between them both they have diagnosis as long as my arm including autism, global developmental delay, neurofibromatosis type 1, anxiety, visual impairment, learning difficulties and a whole heap of sensory issues. One of the twins is non verbal.

Maybe one day I will tell my neighbours some of their issues. But right now I am having fun wondering what they might tell you about us.

The lady two doors down might tell you about the morning she saw me wave my daughter goodbye to nursery on the bus while she happened to look out her window just as my son was running down the street flapping wearing nothing but his red school jumper! If you are going to talk to my neighbours it may be best to avoid that one.

The previous neighbour to my right that moved out last year may not have been a good choice to talk to either. He might tell you about the time he caught my son standing at his camper van licking it clean! Thankfully he sold up and moved out a few months later so I might not hear about that one again.

Mind you the couple and their son who moved in after him may be best avoided too. They would only tell you about the screams they hear from my children most nights like they are being killed. I could tell them I am only cutting heir nails or washing their hair but somehow I doubt they would believe me.

The neighbours the other side are not the best choice either I’m afraid. They could tell you about the time they had friends over for a BBQ and turned around to find my son helping himself to the food while they were all busy chatting. Please, please avoid the wife! She was sunbathing one day and as she looked over her hedge she saw my naked son running along side the hedge with his eyes right up against the bush peering through it. I maybe should tell her he is visually impaired but unfortunately she isn’t, so she probably thinks the naked child requires more of an explanation. She hasn’t been sun bathing as much this year for some reason.

The elderly lady across the road could tell you a good few stories. Like the time she saw us manhandle our child into a taxi and wave goodbye to him and he screamed in sheer horror. One day I might explain it was a different colour car that day and he could not cope with but in the meantime it maybe best to keep your distance. She has also saw us a few time wave our hands in glee as the children left for nursery or school and I have a feeling she thinks we look too happy to see them go. There could be some truth in that some mornings.

When we moved into this street we were reliably informed that it was quiet and that there was very little movement in terms of people selling up. It was seen as sought after. We seem to have pleased the estate agents though as since moving in at least three houses on the street have changed hands. We must be a good influence I think.

I’m quite sure my neighbours wonder why my son always wears the same school jumper everyday. Or why we have so many ‘visitors’ who come for around an hour a time and then go again (Social workers, occupational therapists, speech therapists, physiotherapists). They are maybe suspicious of the plain white van that drops huge boxes to us once every two months (nappy delivery month), or wonder why we get our refuge collected once a week when they are on a fortnightly schedule (that’ll be those nappies to blame again!). If they knew where we were going they may wonder why we take the kids to hospital appointments so often or why if they come to the door it is always locked and the key hidden away (think back to the half naked child escaping). They may wonder why my son never talks to them or my daughter won’t look them in the eye. They may even wonder why they see me regularly carrying six year olds who are screaming and trying to bite me. They have no doubt not seen many parents hang out bedding that is half eaten before or hear a child so distraught because you dared peg an item of clothing out without the pegs matching. If they saw my weekly shop they may even judge us for buying only the same select few things every week. A balanced diet in this house means a biscuit in each hand sometimes!
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I’m not sure my neighbours have heard of autism. But I do know they have heard my children! If you want to find out about me please talk to me and whatever you do…just don’t ask my neighbours!

An autism nativity

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An autism nativity

If everyone in the Christmas story was on the spectrum…

Let’s start with Mary and Joseph. The story goes that they were not married.
Now that is easy to understand if they are on the spectrum! They would not like change for a start. And the social anxiety surrounding planning and attending a wedding would be very daunting for someone with autism. As bride and groom they would be the centre of attention and be forced into a social situation they would find overwhelming. The sounds, smells and traditions would all be so confusing. And then Mary would have the stress of changing her name. So it makes sense to not get married.

An angel appears to Mary and tells her what is going to happen. The angel even tells her what to call her baby!
Perhaps God knew how to lessen her anxiety by giving her a clear timetable of events? First become pregnant, then have a baby boy called Jesus. The angel may not have had visuals but the sensory experience of seeing an angel would sure help Mary to remember the events clearly. God even took away the anxiety of having to choose the name for her child.

Caesar Augustus wanted to list everyone in his empire.
An obvious case of someone on the spectrum needing to list and order. I wonder if he even lined them all up? Numbers were clearly his ‘thing’ and he needed to have everyone just where he wanted them.

Miracle of the Virgin birth.
If you know anyone on the spectrum you will know that sometimes the unexpected happens. Non verbal children can all of a sudden start saying words, a child who has struggled to talk in school suddenly finds the confidence to speak up, a child who has not been able to understand the concept of toilet training suddenly has a breakthrough. Never underestimate what anyone can do, especially someone with autism! Miracles happen every day.

Shepherds were guarding their sheep.
Great occupation for anyone on the spectrum! Simple routine day in and day out, solitary job and with the calming sensation of the noise of sheep, who are by nature very predictable and calm animals. They were right where they always were that night. The predictability is so reassuring for people with autism.

Angels appears to the shepherds.
After introducing a sudden sensory experience and change the first thing the angel did was lessen the shepherds anxiety. They immediately calmed them by saying it was good news they were bringing. Then they outlined a very straightforward sequence of events with enough detail to help the shepherd find the special baby. Perfect example of how to help someone with autism. Calm, reassurance and knowledge of what is ahead.

Shepherds pass on what the Angels had said.
Even after a length of time the shepherds remembered word for word what had been said to them. Exactly like so many people on the spectrum who can relay with confidence exact words from DVD’s, stories or conversations. Perhaps the shepherds even had echolalia, a very common speech issue for lots of people with autism.

Mary kept thinking.
Some people on the spectrum take longer to process things and can think things over for many months or years. Mary remembered what had happened in great detail and, although overwhelmed, could recall details in incredible accuracy, similar to many people with ASD.

The wise men see a new star.
Clearly these men were experts in their field, almost it would seem, obsessional. They knew everything there was to know about astrology in order to notice one different star and understand what it meant. Obsessional behaviour like this is very common with people diagnosed with autism.

The wise men went straight to king Herod.
Well that is protocol and one must always do exactly as the rules state! There was no thought that the king could be anything different. People with autism struggle with social imagination and just like the wise men can often continue doing things the same way they have always been done because they can not ‘imagine’ how they could be done any different.

The wise men give gifts.
Once again they did thing as protocol and rules stated. They could not imagine coming empty-handed. The gifts were given in an orderly and controlled manner even though they were presented to a young child. It was all ‘just so’ as you would expect for someone on the spectrum.

Mary and Joseph did everything God commanded.
They were very obliging, non confrontational and obedient even when asked to do things that made them uncomfortable. So much like my own daughter who is so eager to please and afraid of upsetting anyone.

Throughout the story God is the perfect example of a therapist. He has it all planned and lays out those plans to each person as he feels they need. He gives them daily schedules, sensory breaks (the shepherds travelled through the night in the dark after having seen a bright angel, Mary and Joseph get the comfort and peace of a manger after the difficult journey), and he keeps it all in order.

This may be written for fun but it does make you think. People on the autism spectrum are just ‘normal’ people like you and I, or the shepherds, or wise men. They are all important and they should all be valued by society.

As you hear the Christmas story this coming week please think about the fact that just like Mary and Joseph had a long and difficult journey to Bethlehem, some children and adults with autism will have had a long and difficult December with all the changes and stresses of Christmas. And let’s believe for some wonderful Christmas miracles of love, acceptance and support for everyone with autism, learning delays and disabilities.

Wishing you all a peaceful and blessed Christmas.

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