Why I told my Autistic Daughter There is no Santa

I love the magic of Christmas. I love the way it changes people and they think about others much more. Charities often make more money in December than the rest of the year and children sing carols and cheerful songs at school. Although it is very commercial it can be a real time for families to come together and children can have an excitement and anticipation as they look forward to a special day.

So why would I ruin all that by telling my sweet blue eyed daughter that there really is no such person as Santa?

Firstly I am not advocating this is right for every child. My daughter has autism so I chose to explain there is no such person as Santa for the following reasons:

1. Her literal thinking was causing her so much distress about Santa.

Books, TV programmes and all her friends at school talked about Santa coming down the chimney. We don’t have a chimney and no made up story of magic keys or flying through windows could change the fact that even the song talks about Santa being stuck up the chimney! She took Santa’s grotto as literal too so became very distressed and confused that Santa could be in the middle of the shopping mall, at her school party AND in the North Pole making presents all at the same time? Why did some Santa’s wear glasses and others didn’t? Why would some be tall and thin while others were short and tubby?

There is no enjoyment in the make believe of a story when your child sees everything in black and white and will not ‘play along’ just for the sake of it.

2. Her anxiety over all things Santa was stopping her sleeping.

The very thought that a stranger would enter her house while she was asleep utterly horrified her. Even though the whole story of him leaving gifts for her should have eased that anxiety she was worrying over how Santa would carry everything, wether his reindeer would get too tired or even if she would be forgotten (cheers for that one Peppa Pig!) The very mention of Santa was not exciting my child or making her suddenly want to be on the ‘nice list’, it was in fact causing her to stay awake at night worrying and making her jump every time the door bell rung.

I could not continue to see her so nervous and anxious over something that was meant to be a joyous and wonderful occasion.

3. The social expectations around Santa were all too much for her.

Ok so I know she never had to go and see Santa in his grotto anywhere but when he arrived at her school fair or party she found the whole social aspect very upsetting. Having spent years trying to get her to understand basic social rules such as we don’t talk to strangers and we certainly never sit on other people’s knees all of a sudden she watched in horror as every other child she knew broke all of these social rules just because the ‘stranger’ was dressed in a red suit. Her autism makes breaking any sort of rule horrifying and very distressing so Santa became linked with people doing very strange and confusing things indeed.

4. Her defensiveness and love for her brother was more important that any belief in Santa.

This was the crux for me and the reason I found myself sitting with my daughter on her bed while she cried begging me to tell her Santa was not real. You see my daughter has a brother who has complex needs. He can not speak and has a long list of diagnosis. Part of that means he often has very challenging behaviour for medical and developmental reasons. Her brother had just had a very difficult weekend where he had caused hundreds of pounds of damage to things in the house. He had killed her full tank of tropical fish by pouring bubble bath into the water, yet she still loved him fiercely. So when someone heard about her brother’s behaviour and happened to tell her he would be on Santa’s naughty list and would not get anything for Christmas she hated Santa more than she has ever hated anyone ever before.

So I had to tell her.

Telling my young daughter there is no such person as Santa has been the most magical thing I could have done for her. All of a sudden everything now makes sense to her. She can now reason in her mind how ‘santa’ can be in the shopping centre, the local school and somehow in the North Pole at the same time. She realised that the chimney stuff is all a story and there is no need to fear a stranger coming in her house while she is asleep. She understands why children suddenly want to sit on someone’s knee and tell them what they want for Christmas because the man in red is actually not a stranger to them at all. But most importantly of all she knows without a doubt that her brother will have gifts this year regardless of how challenging and difficult his behaviour can be.

I actually wish I had told her there is no such person as Santa earlier. Now she knows Santa is all made up she is happier and more excited about Christmas than she has ever been before.

She knows she is getting presents, she knows who buys them and she knows how we get them.

For some children with autism the magic of Christmas is actually in finally finding out Santa is not real at all.

Could you Spare a Few Minutes to Make Christmas Special for one Autistic Boy?

Hundreds and hundreds of people all around the world have already joined in. It is a simple ask but something that will be life changing for young Isaac.

Here is why:

Isaac is 9 years old and lives in South Lanarkshire. He is the oldest of twins and he has complex needs. He has a diagnosis of severe autism, significant learning difficulties, he is unable to speak and has neurofibromatosis type 1 which has caused a tumour on his optic nerve and on his brain. He does not play with toys but he absolutely loves lifts (elevators to those in the States).

Isaac does not cope with change. He finds Christmas a huge challenge especially when he can not get the sensory enjoyment of watching and going in lifts. Although he watches lifts on YouTube as his parent I am very aware of the language used in many of these videos and would rather he was not hearing such vocabulary. Every time Isaac is distressed (which is daily) or frustrated or bored he only wants to see or be in lifts.

He loves any sort of lifts. He is a regular at the lifts in the supermarket car park, fascinated by the numbers, the voice saying what level you are at and the excitement of the words ‘door opening’. He loves to press the buttons, watch the doors and watch others getting in and out. This is not a recent thing either as his love of lifts has been ongoing now for over six years and shows no sign of abating.

The problem is on Christmas Day and New Year’s Day it is very hard to find a lift that Isaac can watch or go in as everywhere is closed. Isaac does not understand the concept of closed or have any idea about Christmas. There is no toy he longs for and he has no idea who Santa even is. All he wants is to be in a lift or to watch them. When he can’t he self harms and screams for hours.

Can you help Isaac?

Gemma Bryan, a friend of mine who I have yet to meet, decided to make this Facebook page up in the hope a few people would take some pictures and videos for Isaac that he could watch during the Christmas holidays. Please check her blog out here

The lovely Marc Carter at Little Blue Cup then shared Isaac’s story on his website and Facebook page. His site helps find things for children with autism and other disabilities that they are attached to and need replaced for any reason.

Marc happened to appear on ITV This Morning with Philip Scofield and Holly Willoughby on Wednesday 22nd of November where Isaac’s appeal was aired live. I broke down in tears when Philip and Holly surprised everyone by making their very own lift video for Isaac too.

So what can you do?

Well if you would like to join Philip, Holly, transport for London, charities, cruise companies, housing associations, lift manufacturers and hundreds and hundreds of everyday people around the world it is very simple.

The next time you are in a lift please take a photograph or a short video clip and load to this page. All the clips and photographs will be made into a dvd for Isaac and also loaded onto a special YouTube channel for others to enjoy too. What takes you just minutes will be life changing for Isaac and his family.

Be part of something special this Christmas. Help make Christmas special for Isaac.

Every picture and every video matters. We appreciate every single one of you.

Please spread the word.

Pictures and videos should be sent to HERE

With special thanks to Gemma Bryan and Kelly Kemp from It’s a Tink Thing for helping me admin this page.

The One Thing I Want in Life for My Autistic Son

My son has lots of difficulties in life. He can not talk, he can not read, he can not write. He struggles to join in anything others are doing, preferring instead to flap at lift doors opening and closing or turning hand dryers on and off repeatedly. There is a long list of things I would love him to be able to do including communicate his needs, be more independent, understand what people are saying to him or even use cutlery.

Yet two days ago a photograph sent home in his school bag made me suddenly realise that all I really want for my son is one thing: to be included.

My son attends a school for children with severe and complex needs. Many of his ‘friends’ are wheelchair users, or non verbal or perhaps require to be fed differently via a tube. Some have behaviour challenges and others have genetic conditions or learning delays, but they all have unique and wonderful personalities. The small class sizes and increased staffing are necessary for all of the children, most, if not all, of whom will require support all of their lives.

However his school building is modern and custom built. One of the most remarkable things about the building is that it is shared with another school. This is a new and innovative idea where I live but one that seems to have huge benefits not just for complex needs schools and mainstreams but for schools of different faiths too. The building announces proudly to the community that we are all one and we are all the same even if we appear to others as different.

I have to be honest and say I would rather my son did not have some of the physical and cognitive challenges he faces daily. I wish he could speak, I wish he could read and write not because it would make me feel proud as a parent, but more so because it would benefit him so much. I wish he could attend mainstream school like his sister does because he would be known in the community and have friends locally he could play with, not because I have any issues at all with the challenges he faces. He is loved immensely for who he is but it would be beautiful if he was with his peers much more rather than separated and educated so far from home.

So getting the photograph sent home with him spoke so much to me. The photograph shows my son with children from a mainstream school playing a game. He is being supported not by specialist trained teachers or support staff but by another child. He is being included.

That is what I want above anything else for my son. I want him included as equal in society.

I don’t want him pitied.

I don’t want him ignored.

I don’t want him excluded.

I don’t want him mocked.

He has had enough of those things already.

Yes there are things my child can’t do, but there are things every one of us can’t do either!

The children in the photograph had no need to know the list of diagnosis my son has. They didn’t need training in the latest model of therapy for those with autism or have to have hours of training in physical therapy. They didn’t see a child who can not speak or who is unable to read. They saw a child called Isaac and did what they could to have him join in to the best of his ability.

See my child. See him for who he is and not all the things he can not do. See him as a child who is worthy just as every other child is. See him as a peer.

Please let this photograph help change society. Please let this be the generation who sees people as equal.

Please give me hope that the one thing I want for my autistic son may actually happen one day.

Maybe you can’t include MY son but you won’t have to look far for a child who may also have autism, or a genetic condition or who struggles. Send them that party invite. Encourage them to join in the game. Offer to push them on the swing at the park.

Every act of inclusion is an act of love. I promise you it is worth it. I promise you everyone will gain from this.

Why Has Society Got Such An Issue With Parents Being Carers To Their Own Children?

‘What do you do for a living?’ 

‘I am a carer.’

‘Oh wow. Where do you work?’

‘From home. I care for my disabled son.’

‘Oh, you mean, you are a stay at home mum?’

——

What is the problem with people understanding the fact that I can be a mum and a carer for my own son?

 
Even within the community I am part of (families with one or more children with a disability) some still don’t understand. They see what I do as what every mum would do and to an extent they are right.
The issue is my son’s needs are so great at present that I am unable to work. He has complex needs and is therefore entitled to a benefit for disabled people. Part of that means someone is able to claim a separate benefit to care for him. Why can’t that be me since it is me who is doing that job?
If I were to devote the same hours to caring for my elderly mum, or for my next door neighbour or even a friend I would be seen as noble and brave and most people would be urging me to claim the carers benefit to cover my expenses of taking them to hospital or making them meals or even as token payment for my hours of care. The issue only seem to be when I mention that the person I care for is in fact my own child.
You see people are able to see that caring for someone else necessitates a clear distinction of roles. There is an expectation of a carer to put so many hours in, put the other persons needs first, make sure the person cared for is getting the best services possible and facilitating them to attend places they need to go to. When you give birth to a child there is an assumption that a parent will do all of that for a child regardless.
But there is also an assumption that at some point the child will became more and more independent and the caring side of parenting (the formal looking after side rather than the emotional caring which lasts a lifetime) will gradually fade.

There was a time in my son’s life when I realised that for him this was never going to be the case. It was not a day or even a week but a gradual realisation that the child I gave birth to was not meeting milestones and was never going to live independently in any way. At 9 he can not speak. He has no concept of using the bathroom on his own. He can not open a packet of crisps nor use a knife and fork. He can not dress himself.
His care needs are 24 hours a day 7 days a week. He started receiving his disability benefits at just two years old. I never started claiming anything as his carer until many years later. When he was still of pre school age, even though he never walked  until after 3 and he was uncommunicative with very limited understanding, I still viewed myself as his parent much more than any sort of carer.
When he began school I looked at returning to work either part time or full time. That was the beginning of me realising I was not in any way a traditional parent. The school would call regularly just as his nursery had done previously. His medical appointments totted up quicker than I could keep up. His diagnoses accumulated continually. His development, on the other hand, stalled. Sleep was just a few hours a night while screaming could last much of the day. I sat in so many hospital waiting rooms dreading what doctors would tell me next.
I googled what a carer was:

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. (Www.carers.org) 
I googled what a parent or parenting was:

Parenting or child rearing is the process of promoting and supporting the physical, emotional, social, and intellectual development of a child from infancy to adulthood. (Wikipedia) 
I thought about my child. If parenting is supporting his development from infancy to adulthood I was definitely a parent. But I looked at the roles of carer and realised my child has a life long disability. He wasn’t going to get better and at no point in the foreseeable future would he cope without my support.
I could not get a job because my commitment to him was too high. He could not access after school care and neither could a child minder look after him. Family members could not look after him either as his physical care needs were too high. I finally realised I was his full time carer as well as being his mum. 
I understand that my role is complex. I understand that many would say ‘well surely any mum of a disabled child would do that?’. I see you metaphorically scratching your head trying to figure out if it is right that a mother can be paid to care for her own son.
While you think about it I am wiping dinner from my son’s face. I am holding his hand while he walks, I am lifting him into his car seat and strapping him in. I am watching him through the night as he is wide awake yet again. I am bathing him and changing his continence products.
I can’t wait for society to decide if I am caring: I am far too busy being my son’s carer. 
There is no-one else stepping in to the role after all.
Whether society wants to accept it or not thousands of parents in Britain today are caring for their own children as well as parenting them. 

I am just one of them. 

 

A version of these his article first appeared on Firefly here

Autism: When your child’s obsession consumes the whole family

My son love lifts. He has done for many years now. He watches lift doors open and close on YouTube, he knows every shop in our town and beyond that has a lift, and when he has hospital appointments we HAVE to visit every lift in the entire hospital. 

It is consuming! 

It rules his life: He is drawn to lifts like a magnet is drawn to metal. He can not simply walk on by or use it for the functional purpose of just moving up one floor. No! He has to press every level, every single time. He has to get out at different floors and watch the same doors open and close from every possible angle. He has to flap, dance and giggle at people getting in, people getting out and the repetitive announcements telling you which floor you are at. He has to touch every wall, put his ear to the back and have a fit of the giggles at me preventing him from pressing the emergency alarm…at every single level! 

It is consuming!

I can’t just go to the shop to pick up milk or a loaf of bread because my local supermarket happens to have a life in the car park and two inside the shop. He either can not come with me (which involves a complete meltdown because despite having limited understanding he seems to be able to sense I am going to somewhere with a lift!) or he comes with me and I risk leaving having only made it to the lift! Moving him on is almost impossible. It involves him self harming, screaming, physically dragging him and sometimes calling for backup. It is not pretty. 

It is consuming. 

He loses all track of time in a lift. It is like an entire world to him. He loves the noise, the echo, the shiny walls, the confined space, the predictability, the voice that comes out at just the right time, the buttons he can press, and the feeling of it moving. It is exciting. It is his ‘happy place’ and he would stay there all day every day. I can’t let him do that though.

So I film him so he can watch himself back. I use ‘first and then’ and desperately bribe him to come away. I use timers and warnings. I use visuals and talkers. I could send God himself to rescue him but he still would not care. 

He is consumed by his obsession and nothing will move him on. 

Isaac is loved deeply. We allow him time at his obsession even though his sister would rather stick pins in herself than be at a lift! But what do you do when every family outing, every waking minute on YouTube and every google search (for images as he has no ability to read or write) is all consumed with your child’s obsession? 

There has to be a balance. Isaac has no understanding why he can not be utterly saturated in his own obsession. He has no awareness of the needs of others or that shops even have closing times! He craves the sensory feedback of lifts like you and I crave water and food. To deny him that would be to destroy him. 

So what do you do when you are consumed by the needs and wants of one member of the family? 

It is hard to get the balance right. We have tried the splitting up idea where one adult has the thrilling day of lifts (yes I am being sarcastic!) and the other entertains his sister. That causes resentment eventually. We have tried days without lifts (that was that awful screaming you heard ringing in your ear thousands of miles from me). We have tried compromising (have you ever tried to reason with a severely autistic non verbal 8 year old? It isn’t fun!). We have even tried the seesaw approach of you get a lift and we all get something we want too. That went down like a lead balloon!

There is no ‘little bit’ when it comes to an autism obsession. There is no ‘forget about it’ days. 

It consumes them. It consumes us. 

We are trying to teach our son patience, self control and limitations. Meanwhile he has other ideas…

P.s. I spent so long at a lift today I typed most of this up while watching him! 

His obsession really has consumed me now too…I am even writing about it! 

That is what happens when your child’s obsession consumes the whole family! 

——-

This article first appeared on http://www.autismawareness.com where you can find other great articles and information on autism.
A link to the original piece can he found here.