Thursday, 25 December 2014

All I Want for Christmas is....

It's a familiar phrase that knocks around at Christmas-time, coupled with a few musical variations on the theme, "All I want for Christmas is...."  (My two front teeth?  You?)  Or how about, "I'm dreaming of a white Christmas?"  Most of us seek that perfect Christmas that has become part of our cultural expectations - a little bit of snow (but not too much!) just so things look festive; family and friends around us (who most definitely are not arguing!)  Excited (but not too excited) children who adore every present that has been given to them, at least one of which is absolutely perfect and just what they always wanted.  And of course, there is the essential huge roast dinner with all the trimmings that at least one member of the household has spent hours cooking (not to mention shopping for and preparing) so that everyone one else can fill themselves up to the point of bursting.  For others, all they want for Christmas is that perfect festive celebration, whether that's at a party, a beautiful church service or a carol concert, it's all part of the package that most of us have come to expect.  This is what Christmas means in our culture.

This year, I have of course already learned to put aside certain of the usual expectations surrounding Christmas with children as, for Adam, this is just another day with no particular significance.  But there were other things that I have been very definitely looking forward to - albeit with some degree of trepidation.  This is my first year as ordained clergy and so I knew it would be my first experience of being run ragged throughout the month as I celebrated all of the carol services, nativity plays and other special events that run in churches at this time.  I knew it would culminate with a very busy but very special week as there was the Carol Service on Sunday, all of the Crib Services on Christmas Eve and followed by my personal highlight, Midnight Mass, which is my absolute favourite service of the year.  I hoped my energy would last through until Christmas Day when I was down to preach in two of our churches and had pre-warned my family that they might have to elbow me awake during the turkey dinner.  

I was nervous about the energy levels required, but also really excited because this is a special time and I love every minute of it.  I was well up for the challenge - or so I thought.  But then, as always it seems, complications occurred.  Last week, Adam brought a cold home from nursery which triggered his asthma.  He then graciously shared his cold with me and this triggered my asthma.  The last time I had a severe asthma attack was around five years ago which landed me in hospital for a week but because it's been so long, I absolutely wasn't expecting it.

By Sunday, if I'm honest, I should have been in hospital but I was being stubborn.  If I just have enough medication, I WILL get over this and I will be fit for Christmas Eve and Christmas Day - or at least, I'll get through them and then have the luxury of collapsing.  Sadly, it wasn't to be.  Calling in sick on Sunday was just the start as, after two days of home treatment with everything the doctor could throw at me, I was in such a bad state that on the evening of 23rd December, my husband rang an ambulance.  One blue light transfer to hospital and that was the end of my Christmas clergy plans.  Four nebulisers in a row and a massive 70mg of steroids and I was finally allowed to go home, albeit well armed with a home nebuliser and dire warnings about coming back if I needed to.  I've also been signed off work for a fortnight and have no option but to sit at home.  Boo hiss.

To say I have been disappointed would be the understatement of the year.  While some clergy have quite likely been crying with exhaustion, I've been crying over not being able to participate in my favourite services of the year.  I've been intentionally trying to focus on being able to spend far more time with my family that I had expected this year and counting those blessings but, to be perfectly honest, it's been hard.  All I wanted for Christmas was to be happy, healthy and busy - very busy!

But then I stopped to think about it and wondered why we have such clear and certain expectations about what makes for a perfect Christmas?  After all, the first Christmas was hardly without complications.  A woman, pregnant before marrying her fiancĂ© and who wasn't even the father of her child, in a culture where this was completely unacceptable.  A woman, insisting that actually, God had made her pregnant and an angel told her so (seriously Mary?  delusional much?  the village gossip must have been incredible!) Then, nine months pregnant, an arduous journey on foot or maybe with the assistance of a donkey only to end up in a crowded town reliant on the hospitality and help of others while giving birth - something else that didn't quite work out as planned.  A brief interlude for some amazing moments of visiting as shepherds and magi confirmed the identity of the baby and then, fleeing for their lives into another country to escape the rage of a murderous king.

Not *quite* the picture perfect Christmas that our contemporary nativity scenes routinely depict.

And as I thought about it, I realised that actually, Christmas isn't about *starting* with light, wonder and happiness and just having a gorgeous celebration because we've come to expect it.  Christmas is about *starting* in darkness, uncertainty and facing the future with courage, despite the fear.  Christmas is about having some moments of inclusion, but plenty of exclusion too.  Christmas is about a very dark world that desperately needed light.  And it's really about us choosing to remember that into that dark world came a light in the form of Christ, the Light of the World.

So, this year, even though I'm sitting on the sidelines and don't get to do many of the things I wanted to do, actually, I'm not alone.  My family are around me - perhaps a rather odd mix of characters and changed expectations, but they're here.  No, I can't do the job I absolutely love for a couple of weeks, but then breathing is rather non-negotiable and I don't particularly want to end up in another ambulance any time soon.  And, while this may be just another day for Adam, we did choose to give him two presents last night and he really enjoyed one of them (while ignoring the other and pushing it away) so we'll see how he gets on today.

In other words, this Christmas may not be perfect or have turned out in the ways I expected it to, but that doesn't make it a bad one.  In the background as I write, there are two children chasing each other around the house and giggling, there's a pile of presents waiting to be opened...sometime over the next few days, and a turkey is still waiting to be cooked later on.  It may be yet another round of "Sleeping Bunnies" on television instead of festive tunes and it might not be quite the day I had planned, but it is what it is and it can still be a happy Christmas.  Choosing to celebrate Light instead of worrying about darkness - that's what it's really all about and that's enough.

Thursday, 18 December 2014

The Question

I am being asked The Question every day, often multiple times a day.  It is always asked with an eager smile, a friendly outlook and hugely well meant by everyone who asks it.  And so, I respond in kind - with a friendly smile and a conversational outlook.  But without fail, my response always causes confusion, disappointment and, in some cases, discomfort for those who have asked.  But for me, The Question and the Conversation that follows hurts every single time. 

The Question goes like this:

"I suppose your little one must be looking forward to Christmas?  He must be very excited!"

And my answer, without fail, though always with a gentle smile, is this:

"No, I'm afraid not.  Adam doesn't understand what Christmas is.  He has no understanding of what this day means and so no, he is not excited or even aware that Christmas is coming."

In turn, the response often goes like this:

"Oh, but surely he will enjoy his presents!  Children always love presents."

And my reply:

"No, unfortunately presents are very stressful for Adam.  It's a facet of his autism you see.  People with autism often need routine, for things to stay the same.  If something new is introduced, they must prepare for it, practice and their parents must help to manage their stress over the unexpected.  If a present is given to someone with autism, it's often much better if the present isn't wrapped or at least, it's only one present at a time so they can adjust to having something new."

Many people then ask whether or not Adam will "grow into it, perhaps in a year or two?" They need to know that, one day, we will fit into the expected pattern, one day, Adam will behave as they expect a child to do.  One day, we will have a "normal" Christmas.  

This conversation is happening every day at the moment.  Every single day.  And the thing is that the people asking the questions truly and genuinely mean well.  They are happy and excited themselves, or at the very least, they want to share in the joy they presume I must be feeling at this season.  Because of course there are really two times in life when Christmas is expected to be deeply joyful - one is when we are children ourselves and the other is when we have young children around us and so can share in their joy.

But few, if any, people who ask this question understand that it hurts me - and they absolutely do not intend to hurt me or to be unkind in any way.  Many are truly shocked by my response and struggle to understand.  They cannot know that while I absolutely, unconditionally love my son exactly as he is, that I still feel very, very sad that he cannot share in the joy of this season.  And, because I am surrounded by children who are experiencing Christmas in "the normal way" - with excitement, anticipation and fun - I feel sad for Adam and I feel sad for myself, his father and his brother because for us, Christmas cannot be the way it is for many people.  And no, it probably never will.  Oh, I understand that the myth of the perfect Christmas is in many ways a myth sold to us by Hollywood and that many people find Christmas to be difficult for as many different reasons as there are people, but this is a reason I never expected.  All of the ingredients would appear to be there - a tree, presents, young children, it's the perfect recipe....except that, in our case, it's not.

Most parents understand that for the first year or two, Christmas is more for the parents than the child because they are just too young to understand.  But there does come a point at which most people expect that there to be a level of understanding, development, excitement and enjoyment.  Adam, unexpectedly, enjoyed his first Christmas and so did we.  As the symptoms of his autism became more obvious, it also became clear that he hated his second Christmas.  This year, so far at least, he is just oblivious but next week, things could go either way.  It's a very poignant thought for me.

Adam's disabilities have completely changed our lives in ways we never expected.  Each time we come across something new, it takes a period of adjustment and it often hurts as we learn to accept that things are different now.  They're not necessarily bad, they're just different than we might have expected.

I can't help thinking that, this year and probably for many years to come, we're celebrating Christmas in Holland.


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. 

The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. 

And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... 

...about Holland.

Are you struggling with Christmas and how to help someone with Autism cope with it?  If so, there's a fantastic article on the website of the National Autistic Society and you can find it here:  Ten Ideas for a Happy Christmas

Friday, 12 December 2014

A Week of Contrasts

This week has been one of contrasts and, as I wrote on Monday, Adam's first Nativity performance was incredibly touching and beautiful to watch.  It was delightful to see that Adam was among his peers and included for who he is, not what he can do.  I am so glad we had that experience as his second nativity performance was completely different.

This one was with his mainstream nursery, where Adam spends his afternoons, and here the differences between Adam and other children were just huge.  Just to be clear, the staff tried to include Adam in the performance; he was cast as a star and given a lovely costume to wear.  He was included in some of the rehearsals, but for others, had to return to nursery when he became upset.  The staff also talked to me on three separate occasions as they tried to work out what they needed to do in order to help Adam to be a part of the show and to seek my permission to allow him leave the hall if he became too distressed.  They made certain that Adam's support worker from The Bridge would be there to help him and they were keen to take on her ideas as they wanted to include Adam.

But, as I discovered, the simple reality is that expectations of a performance in a mainstream nursery are completely different to a special needs nursery.  The abilities of the children are completely different and so, while Adam was entirely among his peers at The Bridge, here he stood out as the child who struggled.

As we gathered in the hall, waiting with other parents for the show to start, one mother sitting in front of me was saying to the man next to her (a grandparent maybe?) that her child was so excited about this performance, that she had been asking over and over again whether or not Mummy was going to be at the play.  Her mum had assured her she would be there and was clearly sharing the excitement and joy with her companion.  But as I listened, I was struck by the difference between her child and mine because Adam has no comprehension that he might be practicing for something special and even if he did, he cannot convey that to me.  

So I waited and watched as the children were led in and I immediately noticed a key difference. At The Bridge, each of the children were led in one by one with a member of staff helping them on an individual basis, where at this performance, all twenty or so of the children were led in by three members of staff.  The children were then encouraged to sit on the benches in front of all the parents and to wait for the show to begin.  While there was of course some squirming and bobbing up and down, for the most part, the children could manage this.  But as I looked around and smiled at the adorable angels, shepherds, Father Christmas's and other miscellaneous characters, I noticed Adam on the far end of the bench.  He was staring around, completely disoriented having been woken early from his nap and while immensely cute in his little star outfit, it was clear to me at least that here, Adam was different.  His support worker quietly sat by his side with her arm around him and helping him to stay on the bench but where that small element was normal at The Bridge, here, Adam was the only one to need such assistance.

Then came a very poignant and really rather upsetting moment because one of the little angels noticed her mother and called out in a piping little voice, "Mummy, I want a cuddle!" The parents looked on indulgently and smiled at her cuteness, but unfortunately her mother refused her a cuddle and motioned her to stay seated on the bench with the others.  The little girl burst into broken-hearted sobs and I felt so sad for her.  Of course, this mother was just doing her best and thought it was right to encourage her child to remain part of the group, but I really was struck by the difference between nurseries in that at Monday's performance, the children who needed their parents were encouraged to seek comfort.  On this basis, there ended up being multiple parents seated at the front among the cast, cuddling their angels, shepherds and kings but actually, I am convinced this just created a rich sense of belonging and participation for everyone.  Sadly, that small gesture of the mother refusing to comfort her little girl created a real feeling of discomfort, particularly because the child continued to sob through most of the performance.  Her mother looked around at the other parents more than once, clearly feeling embarrassed by her daughter's reaction but I just wished she would simply go and offer the cuddle and help to calm her child.  I felt genuinely upset for the girl and whispered under my breath, "Oh please go cuddle your angel!"  I was two rows back so I know she wouldn't have heard me but it just seemed so sad to me that her mum was more worried about what others might think than that her child was in distress.  

Then, as the play started I realised that all of the little three and four year olds had clearly been practicing very hard because they all acted, danced and sang the five or six songs in clear little voices, and we could understand the words of their songs.  Of course, they were each encouraged and reminded by the nursery staff when to move and one of the staff read the story aloud but I was struck by the incredible communication skills the other children had.  One little girl had the starring role as "whoopsy daisy angel" and she was just adorable, skipping around saying her lines and even singing a little solo.  I was struck by how simple communication seems to be for a majority of the children and, even though I wish I didn't, also couldn't help but be struck by how impossible such a task would have been for Adam.  It was a moment when I really noticed that things other parents may take for granted in their own children's development are just not coming as easily to my beautiful boy.

After a few moments, it came time for Adam's part.  It was a very simple moment when one of the nursery staff attempted to pull up the headpiece of his star costume over his head as his support worker led him to the front of the room with three other children.  All he had to do was to stand at the front for all of two minutes, maybe less, but that simple action of being asked to move when he wasn't ready to do so and having a very well meaning adult pull something onto his head that he didn't like triggered a complete screaming meltdown.  His lovely support worker tried so hard to help Adam but as she sat on the floor with him in her lap, he screamed and thrashed as she struggled to keep him from banging his head on the tile floor.  The other children glanced at him but didn't pay too much attention because, I suppose, they are actually quite used to Adam's struggles and expressions of distress.  

One his small little part was finished and Adam's worker led him back to the bench, he was still incredibly upset and sobbing so I got up out of my seat, walked to the front and knelt behind Adam.  I remained kneeling behind him with one arm around his waist and with the other, rubbing his upper arm for deep, comforting pressure while his support worker rested her hand on his leg.  I sat and watched as all of the other little children sang, danced and acted and they really were just so incredibly cute.  But unfortunately, Adam was unable to participate anymore so he just stared around the room and continued to quietly sob for most of the rest of the performance.  His support worker kept attempting to interest him in various toys she had brought in his little distraction bag and finally, Adam's attention was caught by a little toy train.  Now perfectly content, he lay down on the floor and retreated into his own private world, playing with his train and track as the performance continued around him.  

I scooted back towards the other parents, still visible and sitting in reach if he needed me again, but also able to watch the children perform.  It was beautiful to see the other children do so well and yet also really quite poignant to watch my beautiful boy, having retreated into his own private world, and so isolated from the events going on around him.  On Monday, it was very clear that Adam fit in.  He was with his peers and it didn't matter if he needed to play with a toy because he wasn't the only one who needed to do so.  It didn't matter that he couldn't speak or sing because no one else did - the head teacher narrated and signed the story and the parents sang the carols.  On Monday, it didn't matter that Adam needed to have his worker sit by his side because all of the children had a member of staff sitting with them.  On Monday, Adam didn't stand out in any way, he was just part of the group.

Unfortunately, on Thursday, despite all of the efforts of the staff to help him, it was just clear that they simply don't have the resources, training or skill to allow Adam to blend in or to shine in his own right.  At first, I felt very sad about this fact and the ways in which disability can isolate my son, but then, I looked at his gorgeous little face set off by his sparkling star costume and I just loved him.  Once again, I felt so incredibly grateful that even though this is not the place where Adam fits in, that there is a place where he does.  This nursery do genuinely love my son and they really do their best, so I am certainly not knocking that.  Nor am I in any way worried about what my son cannot do because this doesn't really matter to me, what's important is who my son is and how much I love him, just as he is.  

But on Monday, I was moved to tears by the beauty of an inclusive performance that celebrated every child in that setting and catered a performance so that it was beautiful and touching.  No parent or child needed to feel isolated because every child played an equal part and was equally supported.  No child stood out as anything other than beautiful.  But while there were of course many beautiful and adorable moments on Thursday's performance, and I was truly impressed with the skill and abilities of the children, it was still very poignant to me because my child could not participate on an equal level.  

Disability can bring true and deep joy at times when it does not separate my son from others, and disability can also trigger genuine sadness at moments like these.  But one fact remains wholly and entirely true - my child matters and I love him just as he is.

Monday, 8 December 2014

First Nativity

Today was Adam's first Nativity performance at The Bridge.  I had no idea how it would go but Chris and I were both joking that it would be absolute chaos.  I feel ashamed to admit that but it's true.  We assumed that because The Bridge is a special needs school and that all of the children have severe and profound additional needs, that the performance would be chaotic - cute of course - but chaos.

We were completely and totally wrong -

 - and I am delighted to acknowledge just how wrong we were.

The performance was beautiful on so, many, many levels.

As it started, the Deputy Head told us all that some of the children would find the experience to be hard - wearing costumes instead of their usual clothing would, for some, be a very uncomfortable experience.  For others, entering a hall crowded with parents would be overwhelming.  But each child was going to be encouraged to take part and given the choice as to whether or not they felt able to.

Then, she began to sign the Nativity story - I think it was BSL rather than Makaton but as I don't speak that language, I wasn't entirely sure.  Just that alone was immediately so touching for me because it instantly spoke of inclusion.

Then, as the story continued, each one of the children were gently led in by a member of staff.  This was the moment that I started to understand how special this performance was going to be.  The very first character was the angel - and he was in a wheelchair, with a seizure helmet on his head and in a beautiful costume.  The member of staff walking with him was truly cherishing him, slowly walking down the aisle and encouraging him to have his "moment" without apology.

The child who is profoundly deaf, nearly blind and cannot sit up unaided was also an angel.  His teacher paraded him around in a big circle for the angels dance and took her time to make sure his mum could take plenty of photos.  The child with Downs Syndrome who needed to come down the aisle on her tummy, pausing for long breaks as she decided if she could make it to the front was encouraged step by step by her teacher who helped her every inch of the way.  

The child with severe autism who peeped into the hall and immediately crouched down into a ball with his fingers in his ears and his eyes screwed shut as he coped with the sensory overload was given all the time he needed.  After a long period of time spent at the back, he was able to slowly inch down the aisle on his knees, literally one inch at a time.  And I was in tears, so incredibly touched, as I saw his teacher on her knees beside him, also inching down the aisle exactly the way he was, one inch at a time.  She had all the time and patience in the world because he clearly wanted to participate - he wasn't leaving the hall although he would have been welcome to do so if he had needed to - he just needed to take his time and that was fine.

When it was Adam's turn - and His Majesty was very aptly cast as a King - he walked down the aisle, hand in hand with his teacher as they negotiated who would hold his distraction toy and who would hold the King's present.  When he got to the front and took his place on the chairs, head down and busily playing with his toy, his teacher quietly sat beside him and helped him to play so that he felt able to stay.

A vast majority of the children were calm and able to participate but for those who were struggling, if they caught sight of their parents and ran to them, that was absolutely fine.  We were just encouraged to cuddle our children and then help them come back up to the front and to sit with them as part of the cast.  When one of the siblings became distraught because she wanted to go see her brother at the front, her parents allowed her to do so and once she had said hello to him, the Deputy Head very gently picked her up and cuddled her as the performance continued and she slowly calmed down.

I was wiping away tears for so much of the performance and, of course, part of it was because my little baby was in his first play (and any parent would get a bit weepy at that!) but it was so much more than that.  It was about the way every single child was celebrated and cherished just the way they are.  There was no need to be different, no pressure to participate, just a whole hearted celebration of the fact that every child matters.

And as I sat there watching, unbidden, the thought came - God is celebrating this moment, dancing around the throne and saying, "these are MY children too and I love them.  I created them and they are so special to me."  

There was a time when I felt sad that Adam was being sent to The Bridge because it is a school for children with profound disabilities - and you don't choose it, you are sent - but I have long since come to feeling so privileged that we have a place like this on our doorstep.  Today was one of those moments.  

Every child matters and every child is special - and that was abundantly clear.

*P.S. I would love to show you some of the beautiful photos of the performance so that you could see how special it was, but while we are allowed to take photos for our own use, there are very strict rules preventing us from publishing them online so forgive me if this post is unaccompanied by pictures.