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.

Tuesday, 25 November 2014

Does It Really Matter?

Tonight, I read a story from the Huffington Post on Facebook called, "Dear Parents with Young Children in Church" and I loved it.  I thought about the number of times Adam has made noise in church and I've tried all sorts of tricks to quiet him (keeping his mouth full of food is a good one!) and I also thought about the number of times he wouldn't be "shushed" - primal scream during the sermon anyone?  

Yup, I'm the mother of that child.

But as the article continued, I felt a little bit sad because it said:

"I see them learning. In the midst of the cries, whines, and giggles, in the midst of the crinkling of pretzel bags and the growing pile of crumbs, I see a little girl who insists on going two pews up to share peace with someone she's never met. I hear a little boy slurping (quite loudly) every last drop of his communion wine out of the cup, determined not to miss a drop of Jesus. I watch a child excitedly color a cross and point to the one in the front of the sanctuary. I hear the echos of "Amens" just a few seconds after the rest of the community says it together. I watch a boy just learning to read try to sound out the words in the worship book or count his way to Hymn 672. Even on weeks when I can't see my own children learning because, well, it's one of those mornings, I can see your children learning." (Huffington Post)

The reason I felt sad was because, as the mother of a child with autism, I wondered if this was really true for him.  When Adam is in church, is he really learning?  Is he really building the foundation of faith?  Or is he just reacting to an unfamiliar environment while reminding me that he doesn't acquire social skills in the same way that other children learn them?   

I "reshared" the article anyway, because actually I think it's very important - children are and should be welcome in church, even (or especially) with the noise and chaos that follows in their wake.  But I still felt a little sad and I couldn't quite shake the reasons for that.

A little while later, it was bath and bedtime and as Adam happily recited the alphabet with his little foam bath letters, and then the numbers 1-10 before diving around in the water to pair up numbers and make 11-20, I watched him and I couldn't help but smile with sheer love for him.  Once dressed in soft fluffy pjs and snuggled up in bed, we read the current favourite, "Charlie Cook's Favourite Book" by Julia Donaldson and then, as he lay sleepily on his pillow, I softly sang the hymn from Compline, otherwise known as Night Prayer.  The words are ancient but the tune is soft and mellow so it makes a perfect lullaby:

Before the ending of the day
Creator of the world we pray
That you with steadfast love would keep
Your watch around us while we sleep

From evil dreams defend our sight
From fears and terrors of the night
Tread underfoot our deadly foe
That we no sinful thought may know

Oh Father that we ask be done
Through Jesus Christ your only Son
And Holy Spirit by whose breath
Our souls are raised to life from death

But then, I heard a small thread of humming.  I turned my head and saw Adam staring at the ceiling, sleepily sucking on Dumbles.  And I realised that as I sang, he was humming along with me.  He didn't quite have all of the notes right, and when I stopped singing, he stopped too - but when I started again, so did he.

The Compline Hymn was written in the seventh century - this means that, although the words have been modernised over the years, the hymn itself is around 1,400 years old.  And my three year old son, who struggles to communicate, to understand the world around him and to even begin to understand it, can hum it.  

Next time I wonder if it really makes any difference when I take my little boy to church, or make elements of faith a daily part of my routine, remind me of this moment won't you?  

Friday, 31 October 2014

A light somewhere inside the tunnel

Finally, after weeks and months of being told "no", there is some light inside the tunnel - and I'm delighted to be able to say so.  After it became perfectly clear that nothing was going to be easily or swiftly resolved with Transport, I received a call saying that an agreement has been reached to fund a 'breakfast club' arrangement for Adam.  

In other words, Adam's mainstream nursery, ABC, have managed to arrange for a dedicated member of staff who will come in for the 7:45-9am slot.  She will give Adam his (second) breakfast and will then take him across the building to The Bridge (either walking or in the special needs pram that is now on loan from The Bridge for his use) for the start of school at 9am.  The Council will fund this member of staff and the cost of the breakfast club to ensure that Adam arrives at school safely and (hopefully) in a settled mood.  

It's not a permanent arrangement as it has only been agreed up until Christmas on the basis that they still hope to reach a resolution with the Transport team but it's a huge start.  From my perspective, it means that from next week, I will be able to arrive at work on time for Morning Prayer, as I am required to do, and I will be able to be confident that Adam will be safely cared for and transported to enable me to do this.  Of course, the battle is not over because there are only two months until Christmas but at least it buys some time and I am so grateful for it.

In the meantime, I have also received - and forwarded to the Council - a letter from one of Adam's paediatrician's in which she *very* clearly supports the need for Adam to be transported in a carseat. After detailing all of his disabilities, and the challenges these pose to him and to anyone caring for him, she says:

"Adam, as a result of his Autism, can display very challenging behaviours because he often does not understand the situation he is placed in socially or because he becomes frustrated or anxious.  Adam has also been observed to be extremely active and difficult to contain.  His behaviours can include physical aggression in the form of hitting, screaming and kicking.  

In conclusion, I feel Adam's complex medical needs are such that he theoretically could pose a risk to the other children as well as to himself if he is not appropriately restrained when travelling on the school bus.  Whilst he is still only 31/2 years old, he has the mental age of more like a child of 2 years, and who because of his Autism and sensory difficulties cannot understand the world around him, he can respond with unpredictable behavioural outbursts to any perceived changes or things he does not understand.  Hence it seems most appropriate for him to travel in a minibus seated in an appropriate sized car seat that will ensure his safety and that of the other children.  I would have extreme concerns about him being seated using only an adult seatbelt that I believe he could squirm out of and particularly when he becomes more animated and physical during the times he is hyper stimulated because of his sensory problems and Autism.  I would advise that you undertake an individual risk assessment for Adam, if you have not already, with regards to transporting him safely on school transport."  (Emphasis mine)

I was absolutely delighted to read this letter because it is a very true and accurate summary of Adam's needs and the safety risks associated in transporting him.  While I do believe I have always been making a strong case in favour of using a carseat to transport Adam, with this letter, I now genuinely believe the Transport team cannot ignore it, because to do so would be to ignore medical advice, and from the paediatrician who specifically deals with - and is an expert in - Adam's autism.  To even consider ignoring such advice would place them in a very precarious position.

We now have another professionals meeting scheduled, based on the fact that the one directly with Transport failed to resolve the situation and I will keep you updated with what happens.  

And yet, the one final question that is lingering in my mind is to ask where the bulk of the costs now lie:  if the Transport team had agreed to purchase a suitable carseat in the first place, this would have cost anywhere up to around £300 for an ordinary one suitable for Adam's age.  If the decision had been taken to purchase a special needs carseat then this could have cost as much as £900.  Each of those are of course significant costs.  But.  At this point, how much has it already cost in staff hours spent in multiple meetings discussing this situation, in more staff hours researching other alternatives, more staff hours in putting those alternatives in place even on a temporary basis and still more to cover the next phase once that arrangement expires?  Then there is the cost of funding the Breakfast Club, paying the wages of the staff member who will be looking after Adam, every day, five days a week for at least two months.  

Now, ultimately, this IS the cost of looking after a disabled child - it does take staff time, different solutions and different paths towards funding; BUT does the cost that has now accumulated in dealing with this situation really compare to the cost of simply purchasing a suitable carseat in the first place?  Does the cost really compensate for all of the stress that both I and Adam's Dad have faced, along with the stress Adam has faced with the changes to his routine, all of the time that both of us have lost at work and the pay that Chris has lost in unpaid leave to attend these meetings?  

Longterm, while I AM grateful to have been offered an interim solution, has it really been the best, most cost-effective one?  I genuinely hope this is something that will be noted in the Council's files as they consider the way this situation has been dealt with.  What is it that is all too often said, "lessons will be learnt from this" - will they?

Wednesday, 22 October 2014

...And still, nothing is resolved

Today, we had a meeting at Adam's school with the Transport Manager, Nicola, a representative from the Council, Karen, acting as a mediator and also the Headteacher, Heather.  This meeting was arranged because Transport did not attend the last one on 11th October - if I'm trying to be very gracious about it, then let's just say there were misunderstandings as to whether or not they needed to.  

During the meeting, Nicola demonstrated two different types of "harness" options, and described a third, each of which are designed to keep escaping children in their seats on a bus.  This is particularly relevant for children with cognitive disabilities, including autism, which prevents them from understanding the consequences of their actions.  It was certainly interesting to see these options as they may be something we might need to consider in the future, when Adam is older and heavier if escaping remains an issue for him but each of them hinge on the child sitting in the ordinary bus seat.

Nicola also made it abundantly clear that she is not, under any circumstances, prepared to offer Adam a carseat and that no child over the weight of 18 kilos ever will be offered a carseat on the buses.  When I reminded her of an earlier conversation between us, she conceded that a 25 kg carseat had once been provided for a specific child with "floppy baby syndrome" who was unable to sit up independently, but insisted this was a special circumstance based on that child's disability.  She also said that information I had received from a number of other members of staff who have told me that it was possible to provide carseats for children over 18kg's was incorrect.  Her opinion is that only children she would class as babies (under 18kgs) need a carseat on the buses.  Nicola also said she has now issued a transport wide order removing ALL booster seats from the buses because she believes the only purpose in a booster seat is to allow a child to look out of the window.  She will not concede any safety benefits to a booster seat on a bus.  When Chris challenged her on this removal of booster seats, saying that he has seen two separate children on buses in the last week riding in booster seats, both of whom are larger and older than Adam, she said this is contrary to her instructions and that these booster seats will be removed.

Nicola also insisted that the service provided by transport is a "bespoke" service which meets the needs of each child and that she cares for the children on transport as if they are her own.  She explained that the transport system has (thankfully) never had an accident and therefore is very safe.  She also described the various emergency procedures that are in place to deal with medical or behavioural emergencies.  However, it seems is clear to me that the service is only bespoke so long as what is requested falls within her very narrow categories of what she is willing to offer, and does not include either carseats or booster seats.  I struggle to see how she is valuing the children as her own if she is unable to respond or adapt to a parents simply stated request that a young and profoundly disabled child should be transported in a carseat.  She also said she believes I am very over-anxious about Adam's safety because he nearly died at birth and acknowledged I may believe her to be entrenched in her opinions. When asked what procedures are in place to appeal her decision on carseats, she at first said there are none but eventually accepted that Karen will be in contact with details of the appeals and complaint process (part of which I have already triggered a number of weeks ago when submitting a complaint to the council and also writing to my MP seeking his help).  An ombudsman has been mentioned.

In the end, as things began to go distinctly downhill, Heather brought the meeting to a close identifying that we were, once again, effectively at a standstill.  If Adam is to be transported on the buses, then I want him in a carseat and Nicola is not willing to provide one.  Various other options are being explored by a number of other departments in the council including Children's Specialist Services and Family Connect which include:

- The possibility of funding and/or offering staff to Adam's mainstream nursery to allow him to attend there before moving on to The Bridge, although even if this was an option, it would be time limited as Adam "ages out" of nursery by next summer.

- The possibility of finding and/or funding a specialist childminder who might be able to care for Adam in their home around The Bridge's school hours.

- The possibility of retaining a specialist agency carer who would come to the house to "cover the gap" between when I need to leave for work and school opening and who would also transport Adam to school (and if this were to be the case, then I presume I would be allowed to provide a carseat for this).

I can't help wondering how much any of these options will (or are) costing the council, including the time spent by various members of staff in these meetings and how this compares against the cost of a carseat.

In essence, nearly two months later, there are still no solutions.  There are various options being explored and I am grateful for Karen's work in attempting to work through these, but two formal meetings, various individual assessment meetings and extensive telephone conversations and we are still no further forward in terms of any concrete solution.  There will now be another full professionals meeting scheduled at Adam's school after half term at which we will (hopefully) find out if any of these possibilities can actually be offered, as opposed to just explored.  I will once again be writing to my MP to update him on the situation as he has kindly expressed an interest in it and has already written to the council on my behalf, who assured him they were dealing with the situation.

What else can I say?  I'm tired.  Frustrated.  Confused as to why the provision of a carseat for such a young and profoundly disabled child seems so impossible and yet, not willing to give up.  As I said in the meeting, for me, Adam's safety comes first and until and unless I am absolutely convinced he is safe, then I will not bend.

Monday, 29 September 2014

A Transport Update

I've had quite a number of friends asking how things are going with Adam's transport situation and whether or not anything has been resolved.

The short answer is not yet.  I'm still doing the school run each morning, and so missing Morning Prayer, but thankfully my training incumbent is being very kind about it.

The slightly longer answer is that the Disabled Children's Team have been digging away behind the scenes and are trying to unearth sources of funding for Adam's nursery hours and to find a resolution with transport.  I also sent a detailed letter to my MP, Mark Pritchard, asking for his help and have so far had a basic response letter and a personal voicemail from him saying that while the situation is a complex one, he is working to resolve it.  Similarly, the Shropshire Star are also likely to do an article on it.  In other words, I've got quite a bit of support and that feels very helpful.

A meeting has been arranged at The Bridge in a week's time which will gather all of the professionals involved in the situation, along with representatives from the Council to discuss it.  

Hopefully, there will be a resolution soon and I will of course update when I know more.

In the meantime, I did have one very good piece of news last week.  Adam has long since received the caring component of Disability Living Allowance because of the 24/7 care he needs from us, but he had previously been turned down for the mobility component.  I appealed this decision, on the advice of other parents in similar situations to our own, making the case that while Adam can walk/run/jump/climb, he is not able to do any of these things independently because of his autism, hearing and visual impairments.  On this basis, he needs constant supervision, we regularly need to perform lifting/carrying and other tasks like coping with his meltdowns and that this is far more care than a non-disabled child of his age would require.  With this and the supporting letters from the raft of professionals involved with our case, the appeal has thankfully been granted and Adam has been awarded the mobility component at the higher rate.  This now entitles us to apply for a blue badge, a motability car, and a disabled tax disc.  All of these things will make a huge difference so it has been a very bright spot in the week and I am grateful for it.

Friday, 12 September 2014

The Nightmare Continues - and gets worse!

After the nightmare that was the transport situation yesterday, I really didn't think it could get any worse.  I was completely and utterly wrong.  

This morning, the bus arrived and I walked Adam onto it, cheerfully encouraging him that it was time for the bus.  We got as far as stepping up onto the platform and I froze.

"Where is his carseat?!" I demanded abruptly.  

This was the first time I was anything other than polite with them.

"The response from the passenger carer was, "We've been informed by the office that he doesn't need a carseat.  It's perfectly safe for him to sit on the bus seats, using our seatbelt."

"He's three years old!" I snapped.

"The office says he does not need a carseat," she replied.

"There is no circumstance in which my son is going to travel on this bus without a carseat.  That is not acceptable," and I marched Adam off the bus before having to contain him as he melted down and behind us, the bus drove away.

On my knees in the middle of the driveway, with my arms wrapped around my thrashing, screaming, flailing son, I told him I loved him, that he was safe, that he was still going to school, it would just be a little bit later on - again and again until I could get him into the house.

I rang Adam's Dad at work and through my tears and anger, told him what had happened.  He was appalled and immediately rang the Transport Office, where he was told that someone would ring him back when they got into the office.

In the meantime, I did my best to occupy Adam in the garden by blowing bubbles which is something he is normally very excited by.  On this occasion, he just stood and stared blankly, not showing even a flicker of interest.  Adam simply cannot cope with changes to the routine he expects.

Eventually, it was time to go to school and so we drove - with Adam securely strapped into his carseat!  When we arrived, Adam was restless and upset and once the staff came out to collect him, he once again melted down.  I said and signed to him, "Goodbye Mummy" and gave him a huge hug telling him I loved him before handing him over to one of the TA's and I listened to his screams echoing down the corridor as she took him to his class.  I then asked if I might speak to one of the head teachers and was very grateful to be seen by the Deputy Head immediately.

Explaining the situation, she confirmed what I already knew, that Transport is not under their jurisdiction but that they would gladly ring on my behalf as a way of adding their weight to the situation.  At that moment the Headteacher popped her head in for other reasons and was beckoned in to also hear the story.  She too offered to help and explained that although I had already spoken to the Transport Manager yesterday that they are under a service contract to the Local Authority.  With my permission, she then rang the LA, explained the situation by way of introduction and put me on the phone to re-explain.  This manager promised to contact Transport to find out what was going on and that she would ring me back.

The Head's were incredibly kind, supportive and plied me with tea while offering as much information and support as they could.  As I was leaving the school, the LA rang me back and said that having spoken to the Transport Manager, they would not be providing Adam with either a carseat or a booster seat because the law on buses is different to that of cars and he doesn't need one.  She continued to say that they believe it is very important to encourage a child's independence and to treat them as their peers until it is proven that they need otherwise and that my demand for a carseat was discouraging his independence.

I firmly stated that I had heard what they said of the law but that I disagreed and there was no circumstance in which I was going to agree to my three-year-old, profoundly disabled son, travelling for an hour a day on a bus with no carseat of any kind.  I also stated that it was unacceptable to intimate in any way that they knew what was more appropriate for my child than I do and that he would not be travelling on transport until or unless this situation was resolved.

Returning to the Headteacher's office, I updated her and she then listed a number of further options they could pursue on my behalf.  She told me that there are a number of parents at The Bridge who, because their children cannot be safely offered Transport, are instead allowed to make mileage claims in order to bring their children to school.  She said this was a reflection of the profound needs of the children attending this school and that if Transport could not meet Adam's safety needs, that I should be able to make similar claims.  I was very surprised that such an option was available, but agreed that she was welcome to pursue it on my behalf and I thanked her for her help and the various other suggestions she had also made.

Returning home, I updated my husband and then around an hour later, my phone rang.  It was the Transport Manager again and she started the conversation abruptly saying, "I've received a mileage claim application from The Bridge School.  I'm ringing to inform you that I will not be paying you mileage, we have offered you Transport that is completely legal and safe for your son and if you choose to turn that down, that's your choice."

The conversation went downhill - rapidly - from there.

I firmly replied saying that she was not offering safe transport for my son, suggesting that it was appropriate to take a three-year-old child in a bus with no form of carseat at all - despite earlier promises to the contrary - was neither safe, nor acceptable to me.

She insisted that he is too big for a carseat and that as "a strong, sturdy boy" he does not need one; she insisted that a booster seat provides absolutely no safety protection at all and is purely intended to raise a child up so they can look out of the window, something that is not necessary in a bus with their larger windows.  She insisted that they have no legal requirement to provide a carseat and that they are doing the right thing by Adam in encouraging him to be independent enough to sit in a seat on his own.  She insisted that I had never been offered a car seat in the first place or that if I had been, that the representative had given me incorrect information.  She insisted that she is "a transport professional" and it is her job to know what is and is not safe for children.  She notified me that Transport have an excellent safety record and have never been in an accident and that even if they were in an accident, the bus is so much larger and higher than other vehicles that it is not possible for passengers to be harmed in any way.  

It went on and on and on.  I argued with her, I firmly notified her of what I would and would not accept.  She even said, "Do you really think I would be having this conversation with any average parent in Telford, offering to pay them mileage to take their own kid to school?!"  At one point, my anger turned into tears as I tried to explain to her that if I am protective of my child then it's actually quite understandable considering I had watched him on life-support and waited as he nearly died.  Her response was to snap at me, "You have no idea what my background is, your son does not NEED a carseat and I will not be offering him one.  You can either choose to accept my offer of transport as it stands or you can turn it down, otherwise we're at an impasse and I will be taking him off the transport list."  I told her I would be writing to my MP and her response was to tell me to send them that letter and she would respond with all of the reasons why the offer they were making was both safe and legal and I could add that to my files.

Needless to say, we ended up at that impasse and the conversation eventually ended.

A further conversation with Adam's school and now, the Disabled Children's Services are investigating, the Local Authority will be receiving a complaint and are again involved and I will be writing to my MP seeking his help.  In the meantime, Adam will not be taking the bus!

During a lengthy conversation with the Disabled Children's Team, she said that the law may be different on the buses, but the Council have long-since committed to treating children in the same way as they would in cars and so providing suitable carseats - particularly for vulnerable and disabled children!  The school have now written a letter detailing the extent of Adam's profound disabilities and are fully participating in and supporting this investigation.

Horrendous does not even describe this ongoing situation.  

All I wanted was for my son to take the bus to school.

Thursday, 11 September 2014

The Bus Nightmare

Unfortunately, Adam taking the bus seems to have rapidly developed into a nightmare.  

I will freely confess that I am *very* protective of him (I think quite understandably!) and one of my "hot issues" is car seat safety.  When I was still pregnant, through the help of a good friend, I did a lot of research into car seats and eventually bought a special rear facing seat from Sweden that would continue to hold Adam until he weighed 25kg, or around age 4-5.  I now know that it is much MUCH safer to keep a child rear facing until their spines and necks are strong enough to cope with the impact of even a small collision.

All of that to say that, for me, turning him forward facing is actually a big deal and not something I have wanted to do before he's 25kg.  But when we made the decision to put Adam onto the transport buses run by the council, I had no option.  They only provide forward facing seats and, using the catch-all phrase of 'health and safety', they wouldn't allow us to provide them with a carseat.  However, we were assured that he would remain in a properly restrained child car seat (albeit forward facing) until he was 25kg.  At the moment, he is only just about 20kg.

When the bus rolled up on Tuesday, they had an child car seat fitted and ready for him.  But as the attendant was strapping him into it, I noticed one of the straps was twisted around - in a five point harness, this is a definite danger issue so I straightened it.  She didn't appear to notice.  I took a photo of him (which I have not shared because he was crying after bumping his face as I previously wrote about) but it wasn't until looking at this photo after the bus had left that I realised his *other* strap was also twisted - she hadn't noticed or straightened that and neither had I.  Thankfully, there were no bus accidents that day, but if there had been, this would have been the difference between a little bump and potentially serious injury for my son.  It's a big deal.

Yesterday, the bus rolled up and he was strapped into the seat and I noticed that this time, the three point seatbelt was being used instead of a five point harness, but she had left the section across Adam's tummy so loose it was at least four to six inches away from his body.  If there had been an accident, this would have allowed Adam to slide right out from inside the seat belt and again, risk serious injury.  Because I noticed this, I tightened it.  But as I stepped away, I noticed that Adam was in a different seat - no longer was it a child carseat with the five point harness we had been promised, it was just a highbacked booster seat typically used with older preschoolers.  I pointed it out and queried the change and she said they had issues with the previous seat "fitting".  Not knowing what that meant, I asked her to clarify and so she rang her supervisor and put me onto her.  I was informed that in fact, the first seat they had used was only rated to take an 18kg child so he never should have been in that in the first place and this was the only other option.  I wasn't happy but I also know that if Adam sees me becoming upset, then this triggers a meltdown because he is very sensitive to emotion and doesn't understand why Mummy might sometimes be upset.  I also know that if I had taken him off the bus, he would have had a meltdown as he is not able to cope with change like that.  

Despite not feeling happy about it, in a difficult situation, I allowed him to stay on the bus but once he had left for school, I had a perfectly polite but lengthy conversation with the Transport Manager for the Council.  She explained to me that in fact, the laws are different for buses and while children under 4'6" or around 12 years of age are required to use a carseat in a car, when travelling on a bus children over THREE are not required to use any kind of carseat at all!  She explained that simply in providing a booster seat, they are actually exceeding the law.  I was shocked and horrified.  A bus is still a moving vehicle, travelling on the road, why on earth are the laws so different?  She also confirmed that they would not allow us to buy and provide the bus with a carseat....for health and safety reasons.

I was really, really not happy (to say the least) and had a lengthy conversation with Adam's dad about it last night.  We decided that we needed to give this a chance to work and I possibly need to relax my protective stance over "my cub" just a little bit and so long as they provide a booster seat, we will consent to him travelling on the bus (which is what I had agreed with the Transport Manager).

So this morning, the bus arrives.........

.....and there is NO carseat AT ALL.

They expected him to sit on the ordinary bus seats, in an ordinary seatbelt at the age of THREE.  Worse still, the passenger carer insisted the message she had been given by the office was that I had consented to this.

How on earth does trying to BUY the council a suitable car seat and being refused translate into agreeing that he doesn't need one at all?!

Horrified does not even come close to my reaction.  And so, I was on the phone to the office again.  They also insisted I had agreed to Adam not using a carseat and said the only option was either him travelling as he was, me taking him off the bus and taking him to school myself or them sending out a separate bus just for him sometime later in the morning with a seat fitted.

I was FURIOUS and while entirely polite with the bus staff, made it perfectly clear this was not an acceptable situation.  I removed Adam from the bus and then, as it rolled away without him, had to cope with a complete screaming, thrashing meltdown from him as he didn't understand what he had done wrong to be taken off the bus.  Once I managed to wrap myself around him enough to get him into the house, it was full on containment procedures to help him come to terms with the situation.

An hour later, I took him to school and, because he was being walked away from me instead of having already endured the very difficult situation of 'goodbye Mummy' at bus time, another full on meltdown occurred requiring the specially trained school staff to surround and contain him in the hallway.  I walked away from my son with tears in my eyes as he screamed and thrashed on the floor, desperately reaching out to me.  Taking him into school myself meant that I could not attend Morning Prayer (and for those who don't know, as an ordained minister in the Church of England, this is a requirement for me) but thankfully, my Training Incumbent was very understanding about it.

At 9:01, Adam's dad was on the phone to the Council demanding answers...he received a verbal apology and was assured we would receive written confirmation that this situation would not recur and that *at bare minimum* Adam would be transported in a high backed booster seat with *no* exceptions.  We have not yet received this confirmation but I trust it will be coming.

We have both agreed that if this situation is resolved tomorrow - and stays resolved - then Adam can travel on the bus, if not, Chris will be altering his working hours to allow him to transport Adam to school each day.

This is not the smooth transition I had been hoping for!

Wednesday, 10 September 2014

Tesco Mum of the Year

I am delighted to say that I have this morning received an email from Jane Plumb to let me know that they have finally received the necessary permissions from Channel Five allowing them to post the full six minute video played during the awards ceremony for the Tesco Mum of the Year.

This video includes other contributors that were edited out of the broadcast version (like Jane's son Oliver explaining why he nominated her for the award, along with Jane's sister expressing her support for the work)  It also includes a longer segment of my interview, recorded while I was still at college earlier this year.  (Those who have followed Adam's story will know that his diagnosis of autism has since been confirmed, but at the time of recording, that wasn't yet the case).

So, if you wish to watch the complete video, please do so by visiting the Group B Strep Support YouTube page here.

Please do share this video or other information on how easily Group B Strep can be prevented with pregnant women or those considering having babies and do support the work of this fabulous charity.  You can find any information you need on their webpage at

Tuesday, 9 September 2014

The School Bus

Today was a big new "first" for all of us - but most especially for Adam.  The new term started for The Bridge (his special needs nursery) and this year, for the first time, we're trying to see if he can cope with travelling on the school bus.  Our local council provide an entire fleet of special transport buses that work with The Bridge but up until now, I've been able to take Adam into nursery myself.  This year, as he is in a new class, school doesn't start until 9am while I start work at 8:30am so I had very little choice other than to try.

It seems such a huge step though to bundle my little boy onto a bus, ask him to go with two strangers he's never met before, and trust that he will arrive safely at school - and hopefully without having a massive meltdown in the process.  Needless to say, I was pretty tearful when I woke up this morning...

We normally leave the house at 7:30 (when Adam is going to his mainstream nursery) but his school bus was coming for him at 7:55.  Even though Adam cannot communicate particularly well, he is very attuned to the timings of his routine and if anything is out of place or out of order, he starts to become agitated.  At 7:30 came and went, Adam started to pace, to throw his toys around, to scream. It was clear that he knew something was different and he didn't like it.  By 7:45, his Dad attempted to cheer him up and distract him by playing a chasing game around the main floor of the house.  This prompted huge giggles until precisely 30 seconds before the bus pulled up outside of the front door when Adam tripped and fell, smacking his face directly into his little toy keyboard.  His glasses went one way, his hearing aids the other and he ::screamed:: - quite understandably!  

This was not quite the start to a new experience I was hoping for!  

However, with the bus outside the door, we had very little option so while doing our best to cuddle and comfort him, Adam had to be put onto the bus - albeit with attempts to encourage excitement by pointing out the bus and telling him he was allowed to have a very special ride.  However, being buckled into a strange car seat (forward facing for the first time - gulp!) and being buckled in by a woman he didn't know, did not go down well.  Adam was clearly both confused, upset and still hurting.  Having Dumbles to suck on and Ninky Nonk in his lap did help, but he was still sobbing as I had to walk off the bus and leave them to drive off which point I burst into tears...  

Of course I rang school at precisely 9:01am and was cheerfully informed that Adam was absolutely fine and happily playing outside so I can only trust that he did calm down at some point on the trip, but it won't be until tomorrow morning (when we get to do it all again!) that I can ask the driver and passenger handler how it went.

Friday, 5 September 2014

The Power of Love

This weekend, St Andrews Church is full to overflowing with absolutely *stunning* flower displays celebrating "The Power of Love".  This morning, I had a sneak peak before the show opens, these are just a few of the displays:

Of course, no photo can possibly do justice to the talent and effort of some of the top flower arrangers in Shropshire, so do come and experience it in person.  

Admission is just £4 for adults, £2 for older children and free for under 12's.

There is also a country food fair in the grounds, entertainment for the children and demonstrations throughout the weekend.

Opening hours are 10am - 5pm today, Saturday and Monday and 1pm - 5:30pm on Sunday with Choral Evensong at 6pm.

For more information, please visit:

All funds raised will go towards the repair of the church sandstone.