Christmas for Autistic Adults: What is it really like?

Three weeks ago my husband received a detailed written report which stated clearly that he was indeed autistic. Of course he always has been autistic but as this is his first ‘official’ Christmas as an autistic adult I thought I would dedicate this special blog to the millions of autistic adults who inspire me, encourage me and motivate me to do the best and believe for the best for my two autistic children always.

I have to be honest and say both my children struggle with Christmas and I wondered if that got easier as a adult.

I asked Lisa how she manages Christmas both as an autistic adult and a parent of two children with autism.

I love Christmas and spending precious time with family. Family that I’m comfortable with. I love the events we have over Christmas but at the same time seeing people I have not seen in a while can fill me with anxiety.

It’s like I try so hard, too hard for it to be perfect. And that’s when my obsessive behaviour kicks in. I have to have everything looking just right. I want to attend so many sensory related events with my close family, the ones I’m comfortable with. When they don’t share my enthusiasm it brings me down.

I like to have set people around me and if they aren’t, it makes me anxious.

So as much as I love Christmas and everything that goes with it, i am often accused of trying ‘too hard’. Trying too hard to organise everyone, and pleasing everyone. I build myself up and sometimes I get overloaded with it all.

Social expectations and anxiety was something Chris from (http://autisticnotweird.com) also touched on too:

As much as I love Christmas Day (and speaking as a practising Christian too), it’s surprising how little I love Christmastime. The day itself is usually wonderful, but it’s preceded by a boatload of expectations- some of which you can’t match, some of which are unclear.

Worst of all is the expectation that everyone MUST be happy in the run-up to Christmas – including those with mental health issues. And not only that, but you must express that happiness in very specific ways. (Even on the day itself, it’s a time when getting drunk at midday is seen as acceptable but if you check Facebook to see your friends enjoying themselves, you’re being “antisocial”.) And having to do a hundred things “because it’s Christmas” has never struck me as a good reason to make yourself stressed- honestly, I’d rather celebrate Christmas in a way that helps me to access the beauty of the season rather than the social expectations. I’m pretty sure that’s what Jesus wants too.

Social events can be a struggle for many with autism at any time of year but the extra pressure of so many events can be overwhelming even as an adult. I love how Nikki from http://www.spectrumgirls2.com describes the after effect of so much socialisation as a ‘social hangover’ as this is something I see in my own kids regularly.

I do love Christmas, I think it’s magical and it reminds me of fond memories when family all got together when I was a child. I must admit I do get very overwhelmed with it all as there’s a lot of preparation required on top of being a very busy parent carer.

I find the shops so busy this time of year, music, crowds, lights and I try and avoid taking my girls into crowded shops as many people don’t realise I’m having my own sensory overload as well as trying to cope with both my girls getting overloaded. I do a lot of online shopping. With events like Christmas fairs, nativities, meals, I will cope during the event but will feel emotionally drained afterwards, I often need to go and lie in a dark room and find it difficult to talk after busy events. I’ve heard this being described as almost like a ‘social hangover’ amongst adults on the autistic spectrum. I do a lot of avoiding if I find something quite heavy going, I’m not keen on the wrapping of presents so I do put it off a lot! One of the more unusual feelings I get every Christmas time is a slight depressed feeling of ‘fear of missing out’ which is something that I’ve only just recently found out about. It’s a feeling that my children are missing out on experiences such as visiting Santa, etc but then I have to take a step back and think that experiences like this are not always positive due to my youngest having a fear of Santa, we have to do what is in their best interest.

Helen from http://www.lifeandasc.com echoed some of those same thoughts:

I love Christmas but in small measured social doses (I prefer to limit social events to 1 or 2 over Christmas). I have a set routine for Christmas . In fact the way we decorate the tree and the meal I cook is the same since I was about 10. The hardest thing for me is present giving – I am bad at keep a surprise or waiting till Christmas to open things. For me the greatest thing about Christmas is the ability to stay at home without having to do much – as I tend to use it as complete downtime.

Surprise presents was something Nigel struggles with too:

I’m not a big fan of Christmas. I find it stressful, it’s hard to do the weekly grocery shop when everything has moved around. The whole pressure to socialise, shops being busy, roads full of traffic and the same old songs every year! I’m glad when it’s all over. I much prefer people to give me vouchers or money so I can buy what Iwant when Iwant it and not have to pretend what they have chosen is anything I even like!

I went on to ask Lee if he had any coping strategies that worked well for him:

Ear plugs/defenders, regular breaks to a quite area that others know are out of bounds (safe area/place) try and know structure of the day in advance like a timetable and also knowing who’s coming.

Which leads me nicely to the hope that Matt had for me:

As an adult I find christmas not to much of a problem to be honest, it makes a good excuse to drink and throw money up the wall lol. When I was younger it was a totally different storey though…

I hated the change of routine, things happening on different days, people turning up, tv programmes being cancelled,being so excited about the presents I was getting and staying up all night being sick and then being sick again when I didn’t get what I wanted and working out there was no such thing as Father Christmas and then feeling compelled to tell every other child I saw!

As I expected some autistic adults actually look forward to Christmas and I really hope that one day what Riko from http://www.dragonriko.wordpress.com thinks will be true for my children too.

I love Christmas and having loads of decorations, loads of presents, going shopping, going to parties and having people around.

As I debate whether to put a Christmas tree up or whether this change will once again be too much for my children I am filled with hope that while they will always have autism they may actually one day love putting their own tree up for themselves.

Thank you to all the autistic adults who not only helped me write this but give me hope daily. I hope by sharing your personal perspectives it helps more people understand and accept you all and makes the world a little more tolerant both for you all and for my children too.

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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.

The extra stress of being a full time carer at Christmas

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If you ask people what jobs never get time off at Christmas and the majority will list those in the emergency services or health service. These are vital services that we all expect to work through public holidays to ensure our health and safety at all times.

But among those working tirelessly on Christmas Day, Boxing Day and throughout the new year celebrations too are full time carers; unsung heroes who sacrifice their own holidays to care for the needs of others, often at little or even no pay.

Christmas for full time carers comes with so much extra stress as services they usually rely on throughout the year come to a halt for the festivities. When day care, special needs schools, home help and respite centres all have times of closure for staff to have annual leave the full time stay at home carer is the one left to pick up the pieces, work longer hours and ensure continuity for the person they care for.

Then you have the fact that pharmacies, GP surgeries, dentists, clinics and out patient appointments all cease for a few days too. For full time carers coping with loved ones with complex medical conditions this not only causes complications but extra worry. Out of hours call centres have often never heard of genetic conditions or have the training to deal with patients who perhaps are unable to communicate. Taking a person you care for who has complex medical and communication needs to an out of hours GP with little to no knowledge of their medical history brings risks and worries for a carer so they often care for someone at home when otherwise they would be able to access medical support. Getting a person who is wheelchair bound or who does not cope with new environments into a clinic they are unfamiliar with presents extra stress and anxiety for a carer who is perhaps already exhausted themselves.

Christmas comes with an expectation of giving to family and friends. For a carer who devotes their entire life to someone else this brings a huge challenge of finding time to do all that is expected as a friend, a mother or sister whilst juggling the continued needs of a loved one. There is only so many hours in a day and the pressure on carers to be everything to everyone can take it’s toll.

Carers are incredible people though. They take on the role of so many professionals without the pay or training. They do physiotherapy, speech therapy, play therapy and occupational therapy without realising. They provide stability of care, reliability of routine, love and attention that no other service or person could provide. They feed, dress, take care of personal needs and befriend some of the most vulnerable in our society at a time when these people are so often forgotten.

This Christmas Day thousands upon thousands of full time carers will be preparing specialist Christmas dinners for someone they love, who for many reasons, is unable to use cutlery or sit at the dinner table with family. They could be providing pain relief, ensuring oxygen is supplied properly or talking to a loved one as they come out of a seizure yet again. They could be changing nappies or pads, dressing wounds or unwrapping gifts for someone else who can not do it for themselves.

They do it out of love. We owe them our love and gratitude too. It may not be our loved one they are caring for right now but one day it could be.

I am one of those full time carers at Christmas and I know the extra stress that this time of year brings.

To all those caring this Christmas know that you too are cared for. I see the extra stress this time of year brings and I care.

I see you care.

Know that I care too.

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This post first appeared here

Five Christmas gifts to give to a special needs parent

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I used to think it was only children who were asked in December ‘what would you like for Christmas?‘. It seems as a parent I still get asked this. I tend to answer like most parents do with a simple ‘oh I have everything I need already thanks’ or the soppy mum variation of ‘my kids are all I could ever want and more.’

Both are true to an extent. My life is very full of smiles, blessings, love and joy but as a full time carer for two children with extra needs life is also very full of other things like hospital appointments, meetings, therapy and endless paperwork!

So what would be good Christmas presents for a special needs parent like me?

How about the following:

1. A listening ear.
We all have our own burdens to carry and none of us are without problems in life, yet so often we become so engrossed in our own busyness we forget to take time to listen to others. Giving me your time to just talk while you listen without judgement or trying to ‘fix’ things is one of the greatest gifts I could get all year round. Come visit me at home while we have coffee, or sit with me in the hospital waiting room. I may seem like I am coping but silently I pray for someone who cares enough to listen to my worries and my struggles. If you can’t physically be with me being at the end of a phone or even letting me let off steam via email or message is such a precious gift. You may not be able to wrap up your ears under the tree but if you could loan me them sometimes that would be amazing.

2. A shoulder to cry on.
Some days are just overwhelming. Some mornings by the time I have managed to get the children safely to school I am exhausted and emotional. Lack of sleep, worry for the future and constant battles on behalf of my children become weary. I, like so many other special needs parents, long for a safe and tender place to cry where we feel free and accepted to pour out our hearts. We need that release in order to gain strength to face another day. We need to let the stress come out in our tears knowing there is no shame in showing weakness. Could you be those shoulders? Will you let me cry without question and hand me the tissues without needing to tell me I am over reacting? That would be a gift that can not be measured this Christmas.

3. An encouraging word.
Few people truly realise how negative the world of special needs parenting can be. Forms ask for things your child is unable to do, assessments focus on your child’s shortfalls, teachers comment on how your child is not hitting targets like the others. Hospital appointments bring news that breaks your heart and even the simplest appointments like the dentist are utterly draining. Then add the guilt that your child can’t talk, or walk yet or play like other children. While other children achieve at sports, or drama or art your child excels more at loud outbursts, screaming endlessly or staying awake all night. Encouraging words are few and far between in my world so a little text, or message or a simple smile goes a long long way to helping brighten my day. An unexpected card saying ‘I care’ is like an oasis in a drought. It is beautiful, precious and priceless. You simply can’t give this gift often enough to a special needs parent.

4. Practical help.
I would never expect anyone else to have to see to my children’s personal needs nor do I expect anyone to be up all night long with them. However, there are some small very practical things though that anyone can do for a special needs parent that can make a huge difference. How about holding the door open when you see them pushing a wheelchair? Or holding the lift to save them waiting longer with a distressed child? If you see them carrying a child into a car seat in the supermarket car park why not offer to take their trolley back for them? These small gestures of kindness mean the world to someone who often feels ignored or invisible. Kindness and practical support never ever go unnoticed to a special needs parent and they restore our faith in humanity. Christmas is an ideal time to make a special effort to help the special needs parent as places are busier, louder and more chaotic than usual but remember a little help all year round would never go amiss.

5. Finally be respectful.
It is so easy at this time of year when the weather is awful and time is tight to just park in that disabled space for two minutes while you just nip in for bread. You may never ever think of doing that at any other time but for me as a parent of two disabled children this is a time when I need those spaces even more so. The same with the disabled toilet. I understand this time of year means most public toilets have queues and you don’t mean to upset anyone. However, these facilities are so precious to families like mine and our loved ones need that space and privacy to have their personal needs met by someone else. We don’t have the privilege of being able to wait. Please don’t push that disabled trolley away in your haste to get to the smaller on at the back. Having a soaking wet trolley may be annoying to you but to those of us who rely on specialist seating for our disabled children having an icy, snowy seat prohibits us from going shopping at all. Your thoughts and respect at Christmas mean a lot.

I realise now I do actually want a few things for Christmas this year. I want friendship, time, love and respect and those are not things money can buy, yet they are the most special and perfect gifts any special needs parent could want not just at Christmas but throughout the year.

Could you give me any of these? Do you know a special needs parent who could do with some Christmas magic? Let them know you care today. It could make this Christmas the best one they have ever had.

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This post first appeared here

What if you can’t be Santa to your children?

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I wandered into the shop happily but walked out with silent tears.The music played ‘Santa Claus is coming to town’ and it was just too much. What do you do if Santa Claus can’t come to your town? What if you DON’T want it to be Christmas every day?

What if you can’t be ‘Santa’ to your children?

I am not sure at what age it dawned on me that all those years of having gifts from ‘Santa’ were in actual fact from my parents, but once you know things change. For some it becomes anger that they were lied to, for others disappointment that life is not quite as fairy tale as they would like it to be, and for some it brings a greater respect for their parents as they realise how much they sacrificed to make them happy growing up.

Then you become a parent yourself and this whole ‘Santa’ thing becomes something altogether different. I must admit I have never made a huge thing of it to my own two children but somehow it just seemed the ‘done’ thing that even on their first Christmas (when they were in actual fact just seven weeks old!) they had something from that man in red.

And so it continued year after year with little thought or reflection. No-one wants to have the only kid who got nothing from ‘Santa’. Friends, family and even strangers spent the last week of the year asking children ‘what did you get from Santa?’ Parents smile smugly as children rhyme off expensive gifts and the entire contents of Christmas stockings to anyone who will listen.

I want my children to be able to do that. I want my children to be happy. But this year I can’t be Santa to them.

Now before you get all upset and feel sorry for my children this is not what this post is about at all. My children are blessed. They are happy, warm, loved and have an abundance of toys and games. They haven’t asked for anything hugely expensive this year nor have they demanded something that is out of stock the world over.

In actual fact they haven’t asked for anything because one is non verbal, they both have autism, and one has significant learning difficulties and developmental delay.

What if you can’t be ‘Santa’ to your children because they have no list yet again this year, they have no desire for toys or games and no idea what Christmas is about?

They would be happy watching glittering lights sparkle sitting on your knee or looking at a book together. They gain value more from the touch of your hand in theirs than a pile of neatly wrapped presents from a stranger who apparently came down the chimney during that night.

I can’t be Santa to my children because they have no concept of him. Sometimes that brings silent tears to my eyes when the world is full of parents rushing about checking off lists and hoping and checking for new stock online so as not to disappoint their child.

My silent tears are not for me though. They are in fact for those very parents, who like so many before them, are desperate to be the best Santa their child could dream of.

I am so incredibly blessed. I am so infinitely content. I can’t be Santa to my children but I get to be mum to them instead. I get to read the real Christmas story to them while they happily gaze at those twinkling lights; I get to sing carols to them while they smile up at me; I get to hear their laughter and joy all the time thankful for their health and happiness for another year. Those are things Santa could never bring.

Parents, enjoy being Santa to your children this year but never forget that your gift of time with your children and your love are things that may not be on your child’s Christmas list this year but those are the things they will remember much longer than any toys or electronics.

We can’t always be Santa and give our children everything in life they desire but that is OK. Opening up the latest ‘must have’ toy may bring immediate smiles but lasting joy and contentment comes from parents who provide all year round not just on 25th December.

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Why I am proud my daughter won’t be in this year’s Christmas play


Maybe I am getting old but it does seem talk of Christmas seems to start earlier every year! We are only just over Halloween and already the shops have festive music, selection boxes and wrapping paper in prominent places!

 
As a trained teacher though there is one place I totally understand preparing early for Christmas and that is schools.There is a presumption that schools and churches will put on an annual nativity play or concert of some sort and the organisation involved in these is tremendous. It takes months of preparation to teach children songs, practice words and prepare costumes. For many children and parents it is the highlight of their year.

 
This year my just turned 8 year old daughter has asked not to be in the Christmas play. 
At first I was bitterly disappointed as Christmas is one of my favourite times of year and both my church and her school put on wonderful shows. But when she told me why she didn’t want to be included I actually cried.

 
I don’t enjoy it at all“, was what she told me.

 
It is my duty as a parent to listen to my children and support them. She has a right to choose. My daughter has selective mutism, anxiety and autism. Being on a stage in front of others, remembering stage directions, song words and wearing itchy costumes is something she finds so stressful. She finds the change of routine difficult and the nose frightening. The thought that everyone is looking at her makes her feel physically sick.

 
I realised I wanted her to be part of it all for all the wrong reasons. I wanted it for me, not for her. I didn’t want her feeling excluded or feeling like she was missing out. In actual fact I was putting her in a situation that made her so uncomfortable and stressed.

 
This year I will watch the church play and her school play and no doubt I will still cry at ‘away in a manger’and beam with pride at little children remembering lines. Instead of watching my little girl perform I will have the beauty of holding her hand as she sits next to me and cheers for her friends. She will sing the songs happily and for the first time I will manage to hear every word as her beautiful voice is right next to my ears. We will laugh together at the fun parts and share the experience in a way she finds relaxing and enjoyable. It will be magical but in a very different way than I imagined. 

 
It took courage for her to be able to tell me something she knew I would find difficult to hear. She knows how much I love watching her do things and she knows how proud I am of her. This year she knows I am extra proud though at the fact she felt she could tell me she doesn’t enjoy being part of the Christmas play.

 
I will never forget her smile and the sparkle in her eyes the night I told her how proud I am of her for not being in the Christmas play this year.

 
It is ok to be different. It is ok to say no sometimes too.

The less they get, the happier they are

imageIt is the day after Christmas Day and if social media were to be believed my children have been pretty hard done by. Except they haven’t.

By society’s standard in the country I live in we are considered to have little income. But in actual fact we are very rich indeed.

This Christmas my children received less than many others. Much of what they had yesterday was second hard or given by family. Yet this truly has been our best Christmas ever.

Both of my beautiful twins have a developmental neurological condition called autism. Despite being seven year old my son is unable to speak and has significant communication difficulties. He can not ask or show me what he would like as a gift at any time of year and only plays on rare occasions with toys suitable for infants. My daughter has zero concept of peer pressure or current trends and instead likes to re-enact things she has seen on TV or a DVD. She likes simple, small toys that she can line up.

So I decided this year to give them the Christmas THEY wanted. I was brought up as one of four children with extended family of uncles, aunts and grandparents and a minimum of twelve people at the table for Christmas dinner every year. I loved it! My children would hate this!

So we socialised less. We had less people here; in fact we had no-one around on Christmas Day at all and we all stayed home.

We ate less. The kids had no selection boxes or sweets at all and instead had some fish bites and chips for lunch and sausages and mash with baked beans for dinner later on. We never even had pudding. Not because we could not afford it but because no-one was bothered.

We were at peace. We were content. The less we got and did, the happier we all were.

imageIsaac loved a simple book. And a toy toaster that only just cost marginally more then the wrapping paper I used to wrap it in! A family member bought him a plastic jar of magnetic letters. It brought him huge joy and despite being described by professionals as ‘own agenda’ and ‘in his own world’, he gave me eye contact and smiles and vocalised to get me to tell him the letters and numbers as he showed me them. An inexpensive item bringing priceless moments of love, communication, connection and education.

imageNaomi had a new DVD and some small characters. But one of the things she loved most was a small game of bowling which she used her new characters to play with time and time again. Turn taking, fine motor control, imagination and maths skills all coming into play in a toy that cost just a few pounds. And together we spent some beautiful time together playing a game of dominoes that cost half the price of a roll of sticky tape bought to wrap the gifts in! Gran bought her a tub of Lego and she helped me make a pencil. That pencil became a magic pencil that wrote letters and passwords all over the house.

A few days before Christmas I came back from a meeting at my sons school to a note through my door. All it said was there was a parcel in the bin for me. When I went to retrieve it I discovered two bin bags of wrapped gifts for my children.image I have no idea who did this but it was such a beautiful act. One box was full of second hand transformer type toys. My son has fiddled with these and my daughter is fascinated by the moving parts. Another gift was a craft set my daughter loves and another was some children’s make up which Naomi says will make her even more beautiful. (I don’t believe that is possible!)

It has been a very simple Christmas, by choice rather than need. The children got less but in doing so we ALL got more. More in the way of quality time with them, more peace, more calmness and more appreciation of the things we so often take for granted. For the first time they were not overwhelmed or pressured and neither were we.

I love Christmas; I always have done. But this year my children taught me the true meaning of it all. Baby Jesus was born in the most humble and basic of circumstances and in our humble Christmas this year we found a closeness and a magic we have not had before. My children showed me that the less they get, the happier they are.

Well apart from love that is! You can never ever have too much love!

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