Friday, 27 November 2015

Toilet Training

Adam came home from school with the most extraordinary news yesterday, while his teachers were changing his nappy, they thought he might just need a wee.  So they stood him in front of the school toilets, and obediently, he did so.  

For many children, beginning to understand their bodily functions is a normal and natural part of life that can happen as young as 18 months old.  But for a child with autism, like Adam, this level of understanding does not come naturally and, for some disabled children, it never comes at all.  There are plenty of children in Adam's school that remain in nappies up to and over the age of ten years.  Adam himself is nearly five.

For the longest time, Adam has shown absolutely no awareness of, or interest in, his bodily functions.  Toilet training simply wasn't a possibility and we had resigned ourselves to him remaining in nappies for an indeterminate period of time.  In this, we are immensely grateful that the NHS provides larger size nappies, free of charge, for disabled children as it is not possible to buy them in shops.  

But this message, sent home from school was the cause of so much joy and, never ones to push our luck, we decided to try him on a potty before his bedtime shower - and low and behold, success again!  

This means that we can now begin the next challenge which might just lead to some more development and maybe even eventually the tiniest bit of independence for our son.  In agreement with his teacher, from next week, Adam's school will begin to work on toilet training him and will guide us through the process of doing this with an autistic child.  It will mean new Makaton signs, new printed symbol cards to help him visually understand the process, and of course a great deal of patience as nothing in the world of autism comes quickly.  But this is a step we take with a great deal of excitement because it is one we honestly believed might never come.

Today is a good day.  :-)

Sunday, 15 November 2015

A Sad Day

Duchess
Yesterday was a very sad day for us, as it was the day we said goodbye to our dog, Duchess.  After many months of discussing it and going back and forth, we finally decided with very heavy hearts that we simply could not give her the home she deserved.  The decision reminded us, once again, of the cost of autism.

When we bought Duchess, she was an absolutely beautiful puppy and we very carefully chose a Newfoundland because of the incredibly gentle reputation of her breed.  We knew she would become one of the largest dogs around but were perfectly happy with this, as we've always had large dogs.  We were very hopeful that a gentle dog would be able to make a bond with Adam and be a source of comfort and companionship for him.  

Sadly, this was not to be.

As the months passed, it became clear that Adam was not bonding with Duchess.  She tried to be friendly with him, to encourage him to play, but he appeared overwhelmed by her puppyish enthusiasm and despite our best efforts to prevent it, he would regularly lash out at her.  He would kick her, slap her, punch her and even attempt to dig his fingernails directly into her eyes.  Duchess was so gentle that she never made any sort of aggressive move towards him, she simply tolerated his treatment of her.  We tried many, many times to teach him to be gentle with her but, as in so many areas, we simply could not make him understand.  In an effort to protect Duchess, she ended up spending a lot of time either in the garden or locked behind the gate in the kitchen until Adam went to bed.  We were so conscious that it simply wasn't the life we wanted to give her or the life that she deserved.

But we loved her and we didn't want to give up.  We kept hoping that Adam would become used to her, would stop mistreating her and that, at the very least, he might ignore her if he wouldn't bond with her.  There was just one day in the summer when something clicked in Adam's head and he spent a good hour playing with her in the garden.  She bounced around him and he laughed in delight...but then the switch flicked again and it was as though the moment had never happened.

It's not a pretty sight,
struggling to breathe
Added into the mix, both Adam and I have had many asthma attacks during this last year.  Even though I'm a lifelong, chronic asthmatic, I haven't had health problems this severe for a very long time.  But in the last year, I've been in two ambulances, A&E twice, signed off work for a total of two months and it's gotten to the point that the doctors had no more medication to give me - I was already on the lot.  Eventually, I wondered if I might be allergic to Duchess - despite never reacting to any of our previous dogs - and so I asked the doctor to run tests.  These confirmed that I do indeed have a "level three" allergy to dogs, which on a scale of 1-6 is only really moderate but with a severe underlying condition, it made me stop and think.  And, over the last six to eight months, as Adam was on more and more inhalers and nothing was actually stopping the wheezing and coughing, it prompted me to have a conversation with his class teacher. What she said was sobering.  She told me that every single day, Adam arrived at school wheezing but that throughout the day, his breathing cleared.  He always came home in good health.  She asked me whether there might be anything in the home environment that Adam might be allergic to...?   It didn't take long to put two and two together.

Eventually, after many conversations and even more tears, we made the heartbreaking decision that we needed to find a new home for Duchess.  Thankfully, with the help of my sister, we found her a loving family on an eight-acre horse farm who were looking for a new dog to replace their beloved pet who had died a few months ago.  From the moment we introduced Duchess, it was clear that she would be absolutely treasured and would have a fabulous life with them so we are very grateful to have found what we very much hope will be Duchess's "forever home".

But that didn't make yesterday any easier as we said goodbye to our big, furry friend.  And even as we watched her jumping for joy and gambolling like a tiny puppy around the pastures, we cried many tears.  It seems strange to say that the house seems quiet now, as we do after all have an autistic son who is never quiet unless he's asleep but there is an absence and we are very aware of it.  Both of us feel as though we've failed in many ways because we've never, ever rehomed a pet in all our years of having cats, dogs, guinea pigs and even fish, they have only ever left us for "the great kennel in the sky" as we gently call it.  But however hard and painful this decision has been, we also know we've given Duchess a chance at having the life she deserves with a family who will absolutely adore her.

But that knowledge doesn't take away our sadness at losing our friend.
Our last walk together

Saturday, 7 November 2015

NHS Maternity Review


"We will do everything in our power to make sure that what happened to you, 
does not happen to anyone else." 

Professor Sir Cyril Chantler, 
Deputy Head of the NHS Maternity Services Review

Yesterday, I drove to Manchester to participate in the NHS Maternity Services Review.  The session was facilitated by Bliss and Sands, the stillbirth and neonatal death charity.  Mothers who experienced either the death or serious illness of their babies before, during or soon after birth were invited to participate.  

It was a highly emotional day and many tears were shed as the women shared their harrowing stories, pain, trauma and memories of an experience that is widely believed to be beautiful but for far, far too many women ends up being quite the opposite.  

I went to share my story of the complications around Adam's birth including a pelvic split paralysing me from the waist down and Adam's life-threatening infection with Group b Strep Meningitis.  Even though I have shared his story many times, and always been quite open with the pain and grief of this experience, doing so again, still reduces me to tears.  

It would, perhaps, be easier to be private with his story, to file it away and focus on the beautiful boy who, thankfully and miraculously, survived.  But Group b Strep is preventable, it doesn't have to keep happening.  It can be stopped - if the NHS choose to start making women aware of the dangers of the infection and testing for the bacteria.  

So if, by sharing my story and Adam's story, I can make even a small contribution to the push for change in the NHS, then it is worth every single one of the 200 miles and every single tear it takes for me to tell it, no matter how many times I have to do so.

The good news is that, while the women's stories were many and varied, I was not the only one who shared an experience of GBS.  One woman came to the bereavement session because she had paid the ultimate price for not knowing she carried the bacteria.  Professor Sir Cyril Chantler made it clear that he very much wants the current situation on GBS testing to change and that he will be strongly encouraging the team to make recommendations in the final report in this area.

As he, and Baroness Julia Cumberlege left the meeting, Cyril thanked all of the women for their courage in participating and said those very moving words, "We will do everything in our power to make sure that what happened to you, does not happen to anyone else."   He sounded quite choked up.

I hope and pray that he succeeds.

In the meantime, please would you take a moment to participate in pressing for change?  

You can complete the online form to share your ideas on what needs to change here:  https://www.engage.england.nhs.uk/…/nhs-matern…/consult_view

You can also add your name to over 200,000 people who have signed Fiona Paddon's petition on change.org here:  https://www.change.org/p/nhs-provide-tests-for-group-b-strep-to-prevent-any-more-avoidable-deaths-of-newborn-babies

You could also write to your MP and ask them to support GBS testing on the NHS.  

Thank you


Thursday, 13 August 2015

Tabby McTat

Two nights ago, I captured a video of Adam doing the most amazing thing: reading aloud.  Now whether or not he is actually reading the words, or just remembering the pattern of the story and knowing when to flip the pages based on the pictures, I honestly don't know.  But either way, for a child with this many disabilities and particularly such an extreme language delay, this is truly incredible.

Remember that although Adam is four years old chronologically, behaviourally he is around eighteen months old and in terms of language development, his child psychologist very recently put him at around twelve months old; there are so many things he cannot do, particularly around communication....and yet he can do this.

Adam's favourite storybooks are virtually all written by Julia Donaldson and while he's moved through most of her library, his current favourites are The Smartest Giant in Town, Squash and a Squeeze and the story he reads in this video, Tabby McTat.  This book tells the heartwarming story of a busker and his cat who are separated from each other after the busker's hat is stolen and he is injured giving chase.  Despite mutually searching for each other, the busker and his cat cannot find each other and so Tabby McTat finds a new home with two ladies named Prunella and Pat.  Despite his happiness with his people and the advent of a wife and kittens, Tabby McTat misses his Busker and one day goes on a journey, searching for him.  

The story is told with Julia Donaldson's trademark blend of rhythm and rhyme and I believe it is this that "works" for Adam - even when he cannot make out the precise words, he remembers the rhythm of the story and seeks to mimic the exact intonation in which we read it to him.  At first you could be forgiven for not knowing what he is saying considering his speech is so blurred, but if you know the words of the story, some of which are:

Tabby McTat was a busker's cat
with a meow that was loud and strong
The two of them sang of this and that
And people threw coins in the old checked hat
And this was their favourite song:

Me-eew and the old guitar
How perfectly, perfectly happy we are
Me-eew and the old guitar
How perfectly happy we are*

...then you will be able to start picking up what he is saying.  The original video was around six minutes long and because there are a fair few places where he's just mumbling, I've just picked out the parts where you can tell what he is saying and have added subtitles to make it clearer.





Now I'll be the first to admit that this isn't going to be a Pulitzer award winning speech anytime soon, but for those of you who know the struggles Adam has faced in his development and the uncertainty we still live with about his future development, then you will perhaps understand why I find this to be so exciting.  

The one thing we should never lose is hope.


*Words taken from "Tabby McTat", written by Julia Donaldson, Illustrated by Axel Scheffler, Alison Green Books, 2010

Friday, 24 July 2015

Second Guessing

Yesterday, once we got home from the chemist, Adam was still screaming in his carseat.  For this reason, I quickly dumped our bags in the front hall so that I had both arms and all my strength available to get him into the house.  In the seconds before I opened his car door, I took a deep breath, willing myself to relax and make sure I was capable of helping him into the house, instead of losing my temper and making him come into the house.  He had at this point been screaming for an entire hour so it wasn't unreasonable that my patience was getting rather frayed.

This second of centring myself allowed me to open his door and hold out my arms to him (even though he was still strapped in for his own safety) and say, "Adam, would you like a cuddle?"  He screamed again but then looked at me, with tears streaming down his face, and his next scream was just an infinitesimal bit quieter.  So I said it again, "Adam, would you like to come to Mummy for a cuddle?"  Still sobbing, he at least took a breath in between his screams and this was enough cue for me to feel I could unbuckle his harness and lift him into my arms.  The moment I did, he screamed again, but this time he buried his face in my neck as he did so.  This simple gesture was a turning point.

Adam wrapped his legs around my hips and through his sobs, reached for the car door making it clear that he wanted to close it.  With some trepidation I said, "Adam, would you like to help Mummy with the door?"  He tugged on the door so I added my hand to his and we closed it together.  His sobs reduced slightly and he reached for the key fob in my hand, trying to press the automatic lock button.  I allowed this and then said, "Wow, thank you for helping Adam!  That was such good helping!  You helped Mummy, yay!!!!"  Adam has always responded to praise and this was no exception; his sobs turned to hiccups and he allowed me to hug him close, still very much on the edge but finally calming.

I lifted his head to make eye contact and said, "Adam, would you like a Dumbles?  Would a Dumbles help?"  He looked at me, not saying anything but at least he held my eyes - another step.  So I said again, "Adam, if you come into the house with Mummy, we can find a Dumbles and see if it helps you feel better."  There was no response but that was actually good because if I had suggested the wrong thing, he would have started to scream once again.  

I limped inside, carrying Adam in my arms and gently placed him down on the settee.  He arched his back, just on the verge of screaming again so I crouched down in front of him, found his eye contact and said, "Adam, Mummy is going to get you a Dumbles ok? Dumbles."  Adam's back relaxed just a tiny bit and, taking that as my cue, I went into the kitchen to find a dummy.  I heard a loud crash and a scream from the lounge and rushed back in to find Adam had jumped off the settee, swiped all of his skittles off his toy box and was turning, looking for something else to throw.  

I walked over, took his hand and said, "Ok Adam, would you like to come with Mummy and we'll find a Dumbles together?"  He allowed me to lead him into the kitchen where I offered him a yellow dummy, which he refused but accepted a blue one instead.  We then continued holding hands as I grabbed his drink from the fridge and some dry cheerios from the cupboard.  Offering them to him I said, "Adam, would you like to eat?"  

Without a word, he turned and ran into the dining room, tugging on his chair.  I lifted him into it and, as he dove into his cheerios, the tension finally drained out of his body and my son relaxed.  Realising he'd been hungry, I then rushed between the kitchen and dining room as quickly as I could with a sprained ankle to turn on the cooker, check on him, throw in some chicken nuggets and chips, check on him, grab a plate, check on him....you get the idea.  You see, he's not supposed to be left alone in his booster seat, but with only one of me, I had to do the best I could.

Eventually, with a belly full of child-friendly convenience food, the meltdown was over.  

Thank goodness.  

I sat at the table with my son, nursing a cup of tea (that great British cure-all!) and took some deep breaths.  

An hour or so later, with Chris finally back from work and available to help, Adam had been showered and changed and, as he watched Baby Jake on the iPad, my own tears flowed.  

There is always a cost to dealing with meltdowns, in the moment I react and get through it because I have to, it's afterwards that I have the "luxury" of breaking down, finally able to express how desperately I wish I could have done something differently, maybe reacted better, maybe even been able to use one of the strategies the various professionals have taught me as a way of trying to get through to my son and stopping the meltdown sooner.  

It's at this point that I always second guess myself, wonder if what I did was ok, wonder whether or not I could have done it better.  Helped Adam, and helped myself, coped in the face of the autistic storm in a more constructive way.  Every single time Adam has a meltdown, I always wonder what I could have done differently.  Every. Single Time.

And yet, I know it's not my fault that the meltdown happened; it's not like Adam gives me notice:  "Mother, just to make you aware, I plan to have a full on meltdown in approximately five minutes time.  Kindly be prepared with your best strategies, I believe "social stories" or "now and next cards" would be the best method on this occasion.  Thank you."  Of course that's the whole point and that's why it's so hard; the change is lightening fast and there is no warning.  As I've written before, in a split second, the moment between one heartbeat and the next, Adam can explode.  A calm sunny child happily riding in his pram one second and a screaming, thrashing tiger the next.  

Sometimes, like today, I'm able to realise danger points ahead of time and do my best to prepare him.  Today, we stood in the rain outside the car, with Adam still strapped into his pram and I pointed first to his door, then to mine, saying and signing, "Adam, you may do one...two.  Then, chair.  One, two, then chair."  I emphasised it at least three times as his eyes followed my signs and only when he responded with, "One, two, chair" did I even consider undoing his straps.  The fact that he then continued by saying, "three, four five!" gave me some concern (is that the number of doors he wanted to open or was he just counting?), but by then I was committed.  

Helping Adam walk out of his pram, I held his hand tightly as he opened first one door, then the second.  But at the moment I said, "Now, chair!" he collapsed to the ground once more.  But I picked him up, refusing to take no for an answer and strapped him into his carseat.  Thankfully, today this was possible and he allowed me to do so without screaming.  It was a quiet journey home.  

But what was different, really?  Ok, I tried to prepare him with the steps we would be taking, but he still got upset anyway.  Was he just in a different mood today?  Maybe he had fewer triggers during the day?  Maybe I was calmer because I had prepared myself for a repeat of yesterday?  I have no real way of knowing.  But still, the second guessing continues as I try to plan every moment of my interaction with my son in an effort to avoid or minimise the effect of the autistic storm.

Will it always be this way?  I don't really know.  Maybe he will grow calmer, maybe I will get better at coping, or maybe this is just going to be my life and the only difference will be his increasing size and strength. Nobody can tell me what the future holds, all I can do is hope and pray for the best...and always reflect and try new ways of coping.

Thursday, 23 July 2015

One Hour

This afternoon, outside the doctor's surgery, there was a woman collecting for Marie Curie Cancer Care.  She watched as we pulled up and parked in a disabled space close to her and, as I opened my door and Adam's piercing screams reached her, her expression looked stunned.  She watched - while trying not to make it obvious that she was watching - as I got out of the car, went to the boot to get Adam's pram and set it up.  I looked quite calm.  

Then I opened the rear door of the car and, as this revealed Adam's screaming, sobbing face, she looked quite concerned.  Understandably so.  She watched, while not watching, as I wrestled Adam's screaming, thrashing body out of the car and struggled to strap him safely into his pram and wiped his tears before limping into the chemist.  Adam kept screaming, his body contorted as he thrashed against the pram's safety harness.

What this lady didn't - and couldn't - have known is that Adam had already been screaming and thrashing for half an hour.  I picked him up from nursery in a sunny mood but the usual meltdown started when I wouldn't let him open all of the car doors.  It had taken me twenty minutes to even get Adam safely strapped into his carseat as he screamed and screamed and screamed.  All of the usual offerings of his favourite CD's had been met with screams and as we drove slowly home. the car vibrated with the ear piercing, mind numbing screams that echoed from the backseat.  

It would (perhaps) have been easier simply to drive home but in fact, Adam had run out of one of his asthma medications and so a stop at the chemist was essential.  As I limped inside, wishing my sprained ankle had already healed, Adam continued to scream.  The pharmacist, who knows us well, came out to greet us and even she was concerned asking if Adam was alright.  I had to shout to reply that he would be fine but couldn't summon the energy to explain the car door scenario.  She filled Adam's prescription and we slowly walked back to the car.  

As I opened the doors, the Marie Curie lady watched - more openly now.  After a moment, she hesitantly approached me and offered to help.  I smiled, thanking her and explained that Adam has autism and so he wouldn't accept a stranger's help.  She replied that she hadn't wanted to just stand there and not offer to help - which was very kind of her.  

But then, that comment, the one that is always hard to take.  First, innocuously, "But he really is lovely and sweet," she said.  I smiled in agreement and then she said, "So will he grow out of it?  You know, be ok when he's older?"  

In the background, Adam continued to scream.  

I was polite, explained that Adam was infected by Group B Strep Meningitis at birth and, as a result, he is disabled.   No, he won't "grow out of it", yes, life is hard sometimes (an understatement on occasions like this) but I hold onto the fact that he is alive, when no one expected him to be.  She smiled and said that he was a beautiful little boy and so tall....as he screamed and thrashed in the background.  I smiled too, knowing she meant well and fully intended to be kind and compassionate, then I turned back to Adam to begin the ten minute process of wrestling him into his carseat so we could drive home.

Over the next ten minutes, I was smacked across the face (turn the other cheek is quite literal for me), I was kicked, my shirt was ripped and my sons nails raked across my face leaving red marks.  My ears were ringing from his screams.  I wrestled him into his seat because I had too, but I also wiped his tears and told him I loved him.  

Finally, he was safely secured and as I got into the drivers seat, I rolled up the windows enclosing Adam's screams within the car.  As I started to drive away, Chris responded to an earlier text message saying simply, "Do you need help?"

Do I need help.  Some days there were no words to answer that.  I tugged up my ripped shirt and slowly drove home with my son's screams echoing around me.  

One hour of a life with autism.  

 http://www.gbss.org.uk/why-guess

Tuesday, 21 July 2015

Containing a Tiger

Sometimes, living with Adam is like trying to contain a tiger.  When he's having a good day, he's an absolutely beautiful little boy who delights in cuddles, his favourite toys and spending time with Mummy, Daddy or George.  On these days, it's easy to forget that this isn't the whole picture - or maybe it's a kindness that the brain allows us to focus on taking every moment as it comes.

The other part of the picture is that of a child living with autism who teeters on the edge of meltdown much of the time.  Adam can quite literally transform from a happy, sunny child who is chattering cheerfully to a screaming, thrashing, violent boy in a heartbeat.  Sometimes the reasons are obvious, sometimes they are not.  

At the moment, Adam's current obsession is a desire to open all of the car doors before he climbs into his carseat; we will not however allow him to do this for obvious safety reasons but this means he will open his own car door and then instantly collapse to the ground of the parking lot, and in the midst of his tantrum, will be thrashing his way under the car, hitting or scratching us and screaming so loudly it hurts to be near him.  Any attempt to pick him up, keep him safe by preventing him from thrashing his way under the car or containing him to prevent him running around the car or across the parking lot is an exercise of brute strength.  To endure one of these episodes in a public carpark is to become the object of stares of horror, and sometimes of judgement, from others in the vicinity.  The looks say, as clear as day, 'what a naughty child! Why aren't those parents stopping him from behaving that way?!'    If only it was that simple.

Just yesterday, driving home from nursery with Adam screaming and thrashing in his carseat, my stepson shouted to me that he wished we had soundproof glass in between the front and backseats.  Adam's screams were so piercing that it was painful to be in the car with him.  But as all other attempts to calm him had failed and we had already spent over half an hour in the carpark trying to calm him down, our only option was simply to drive and hoping Adam would grow calmer with the motion of the car.  It was one of the many days on which I was immensely grateful for the special needs carseat that keeps Adam safe and secure in a five-point harness from which he cannot escape.  But still, his own brother wishes for soundproof glass in the car.  I quite understood what he was saying, and yet it was also a heartbreaking comment.

Arriving home, my stepson escaped on his bike as quickly as he could (with my blessing!) in order to escape the noise and I was left to, quite literally, manhandle Adam into the house and try to calm him as best as I could - it took an hour and a half and every strategy I have before Adam finally screamed himself out.  With a currently sprained ankle, this was no easy task.  And all of it was over not being allowed to open car doors.

But the reasons for these meltdowns and tantrums can be as many and varied as you can imagine - they can ensue because Adam is hungry, thirsty, tired, overstimulated, hot, has not gotten his own way, someone else has opened a door before he could get to it, a light was too bright, his toy wasn't working.....I could go on and on.  The point is that I never know, from one minute to the next, whether I will have that beautiful, sunny, cuddly child who melts my heart or the child whom I struggle to contain as I try to avoid being hurt in my effort to keep him safe.  At the moment, I am just about capable of physically containing Adam and/or carrying him at need.  It won't be long before I am pushed past the limits of my strength and I have no idea what I will do then.  

And yet, in the midst of the very dark places, there are also some very bright spots.  This child of mine who remains in nappies at the age of four and can barely communicate his needs is also capable of singing the alphabet, counting to thirty, reciting the days of the week and the months of the year.  He can do simple maths and is at the moment regularly heard singing in his usual blurred voice, "one add one is two, one add two is three..."  When I arrive to collect him from nursery he charges across the room and jumps into my arms, and even though he has to be prompted to say, "Hello Mummy" he still knows who I am and is delighted to see me.

Life with autism is mercurial, often incredibly difficult and even heartbreaking; it can be physically painful and result in numerous injuries inflicted on me by my own child and require almost impossible to describe levels of patience...and yet at other times life with Adam is filled with the innocent joy of simply being a mother and having a small boy crawl into bed with me first thing in the morning (is 4:45am morning?) to snuggle into my shoulder and tug on my arm until I wrap it around him to snuggle him close.  Walking with Adam is a journey indeed.

Saturday, 6 June 2015

"Special Carseat Aids Adam Travelling"

In the last couple of weeks, we have received the fantastic special needs carseat, funded by the Morgan Foundation and Newlife.  Adam had very nearly grown out of his old carseat and was also quite capable of escaping from it, so this seat makes all the difference!  It can hold Adam in a secure, five point harness until he weighs about seven stone so it will last him for a long time to come.

This week, The Shropshire Star featured the story:

The Shropshire Star

Monday, 27 April 2015

A Life-Changing Purchase

When you have a child with additional needs, you make all sorts of adjustments and adaptations to your life.  Eventually, these become so routine that they feel normal and you stop really noticing them...except at certain moments when you see or experience something poignant that can make you wish that life could be different.  Or perhaps when you experience a moment when you realise that without these adaptations, your child would be in danger - then you become aware of them once again.  This is particularly true when an adaptation that was working, malfunctions or breaks.  There is a moment when you wonder, what on earth do I do next?!  

Two weeks ago, part of Adam's highchair broke, meaning it was no longer safe for him to use.  While it may surprise you to know that he has still been sitting in a highchair at the age of four, this is because he's physically capable of sitting, but cognitively is unable to understand why he should sit.

When we had previously tried to stop using a highchair, mealtimes became an absolutely brutal battle that generally ended up with one or both of us in tears and Adam refusing to eat at all.  Helping Adam understand the need to sit requires a great deal of patience and an adult who can remain beside him encouraging him with speech and sign every few seconds.  In a professional environment this is fine because the teachers get their meal breaks at other times, but in a family environment when his mealtime is also our own, it becomes very stressful.  

The simple solution, keep him in a highchair, with a small seatbelt on it, had been perfect - he was absolutely content in the chair (on a good day, meltdowns not withstanding!) but that simple element of being strapped in, with a tray in front of him, prevented him easily getting out of the chair (if he really tried, he could undo the straps, but only on a bad day) and helped him to understand the boundary that this is mealtime, at mealtimes we sit down and we stay sitting down until we are finished.  We knew he was at the weight limit of the chair but when I had approached Occupational Therapy, they said they couldn't help us.  Because Adam was physically able, he didn't qualify for an SEN highchair - those are only for children who can't sit up.  So we kept him in his ordinary retail chair for as long as we could, knowing we were on a limited timeframe.

Then, it broke.  Now what?  We were at a loss.  We had tried booster seats previously, but they didn't help (Adam had a meltdown every time we tried to get him to sit in one) and sitting on an ordinary chair just wasn't the right option for a peaceful mealtime.  We were back to square one so I was onto Google, trying to find a solution.  

First, I found "Crelling Harnesses" in the UK (http://crelling.com) which design support straps for physically disabled children and also provide "houdini harnesses" to prevent children with autism from getting out of seatbelts in cars.  I bought one of their wheelchair harnesses as they are designed to provide support and to keep a child in place.  It was a pretty heavy duty thing as it's designed to help a physically disabled child to stay upright so it wasn't perfect, but I figured that in the absence of anything else, I could adapt it to use on an ordinary dining table chair.  I hoped it might mean Adam could sit on "a big boy chair" but still have the support and encouragement he needs.  Their service was excellent and I received the harness in 48 hours but the harness itself was indeed too heavy duty - the waist strap is fine, but Adam hated the shoulder straps that come with it as he couldn't move at all in the chair.  We've adapted it to remove the shoulder straps and so just use the waist belt and Adam is getting used to that, but there is still a downside as the chair he is sitting in does not have arms so he can slide his little legs off the side.   Once (and thankfully only once!) he tipped the chair over while trying to get off it - thankfully we were right there to catch him.  I think if I could find a "captains chair" which has arms that would keep his legs on the chair area and prevent this.

But still, I kept searching for an alternative...

Then, I came across "Children's Harnesses By Elaine" (http://www.childharness.ca)  This is a small business run in Ontario, Canada (so I was biased to like it already!) and it's owner, Elaine, handmakes a wide selection of incredibly creative harnesses for children with special needs.  The basic part is a harness that goes across the child's chest with straps under their arms and around their back (see photos below).  At first glance, it's not too different from other harnesses you can buy in children's supply stores except that it doesn't come with a cuddly toy or rucksack attached to it (something that may be cute, but can be very irritating to an SEN child) and the major difference is that this harness is strong - it has a 500lb weight capacity metal o-ring on the back, reinforced stitching on all of the seams, and an industrial strength snaphook for the walking reign.  All of the fastenings are on the back of the harness so Adam cannot reach them and so cannot undo them.  What all of this means is that when Adam is wearing this harness, he cannot get out of it, it will not snap - if he decides to "do a runner" this harness will allow me to hold on to him and keep him safe.  That's step one.



Adam wearing a "Children's Harness by Elaine"

The harness includes a number of attachments (sold separately) to help make life easier.  One of these is a special strap which allows you to clip two small loops to the back of a dining room chair to help an SEN child stay in a chair at mealtimes.  This is easily moveable (for an adult - a child cannot) and so it is easily transportable and can travel with you, wherever you may take your child to eat.

Then comes the best bit - attached to the harness is a walking reign that can be any size, but comes as standard at 5'8" (Elaine will custom make whichever size you request if you want it longer or shorter - I bought one at 3' and another at 5'8") and this reign can either finish in a hand loop for the parent to hold, or to a hands-free belt that the parent wears around their waist.  Once the harness is attached to this belt, the child is free to walk but cannot get away so they are safe.

Elaine has thought of everything - she even sells a custom made sweatshirt for chilly days with a small opening (specially reinforced) in the back to allow the loop of the harness to go through it without needing to remove it from the child.  I bought the sweatshirt in bright red but there are all sorts available.  It also means that, if you wish it to be so, the harness can be virtually invisible.




Because both the harness and parent tether are custom made, size is not an issue - whatever your measurements, or those of your child (even if they are a disabled adult!) a harness can be made to fit.  The huge benefit to this is that the harness can grow with Adam as Elaine understands that physical size does not always indicate ability or understanding.  Even if I chose to purchase an ordinary retail harness, it would only expand to the size of a large toddler because most retailers assume that a child grows out of the need for a walking reign or harness - but of course in the case of SEN children, that does not apply.

As I was browsing Elaine's website, I also came across another brilliant little thing - a medical warning label for the car.  I'm not a fan of those "baby on board" stickers because too many people just think they're cute and even though they were originally intended to inform the emergency services that a child was in the vehicle in case of a car accident, I don't think many people use them that way now.  But heaven forbid, if we ever had a car accident and I was not able to communicate with the emergency services, how would they know about Adam's disabilities?  Not being physically disabled, it's not immediately clear.  Adam does wear medical alert bracelets, but what if he had a meltdown when they tried to remove him from the car?  Or what if they tried to communicate with him, not knowing about his autism?  So this sticker, which I've placed under the windscreen where a tax disc used to sit, would give all of the information that was needed in case of emergency:


Front of alert sticker, visible from outside the car.

Back of alert sticker, only visible inside car or when removed.

Of course, I hope it's never needed, but it's peace of mind - and if it was needed, it could help the emergency services give Adam the care that he needs and cannot ask for.  The sticker also comes with an unintended benefit - I regularly receive "funny looks" (and sometimes angry ones) when I park in disabled spaces, despite having a blue badge displayed.  Some people seem to expect that I should be physically disabled, or expect to see me putting Adam in a wheelchair.  On a good day, when he is willing to walk, I often receive judgemental looks that very clearly say, "Why does SHE need a blue badge?  She's clearly not disabled...."  But already in a just a few days, I have seen a few people's eyes slide from the blue badge to the yellow sticker and that's the end of that.  It's not what they're intended for, but every little helps!

Considering I was making an international order, I expected to have to wait for it but I was very pleasantly surprised when Elaine replied to my email on the same day, and having hand made the harness and tether, posted it from Canada just three days later!  Royal Mail had it in my hands exactly 7 days after I placed the order.  The quality of the product is superb and the service was excellent.

Now after all this explanation, why is this purchase life-changing for me?  It's just a harness...isn't it?   Well aside from the benefits of being able to use it at mealtimes, which I've already explained, there's the other massive benefit - and this is the life-changing bit.  On the condition he's in a good mood and is prepared to do so, Adam is physically capable of walking but he has absolutely no sense of safety, risk or danger so he can take off at the drop of a hat and he's fast.  He has no conception of why he should stay with us, that sense other children have of needing to stay close to their carers is simply not present in Adam.  If he did take off, and I shouted after him, there is absolutely no guarantee that he would hear me - but even if he did hear me, he would be unlikely to comprehend the instruction or understand how it should affect his actions   

For this reason, anytime we're outside, Adam needs to either be holding one of our hands (and we need to be constantly alert for the moment when he snatches his hand away to run) or he needs to be seated in his special needs pram (and this is particularly helpful on the days when he won't walk because he is now big enough that I struggle to carry him).  But while I love holding my son's hand for the purpose of affection, eventually it would be nice not to have to hold it all the time - or to be afraid of what will happen to him if he breaks free.  Eventually, as he gets older and bigger, he's not going to want to hold my hand all of the time and then what?

Purchasing this harness - despite it meaning that I receive some funny looks as some people clearly wonder why I have my son on a lead - means that Adam can now have the freedom that most other children his age take for granted.  He can walk beside me on the pavement, he can walk from the front door to the car without holding my hand, and most incredible of all - on Saturday he could walk beside me while I did the grocery shopping and he had the freedom for the first time in his life to not need to be strapped into a shopping trolley.  In his own little way, he even helped me with the shopping, choosing the vegetables he wanted me to buy (and at one point a jar of fish paste...oh well, we can't always get it right!) and I was completely relaxed because I knew he was safe.  I could use both hands for the shopping and to control the trolley and he had the freedom to walk beside me.  On this occasion, he was very calm which was a blessing, but on the days when he decides to take off, the harness would stop him so this means that I can relax and no longer need to be constantly scanning for danger or on alert for the moment when he "snaps" and tries to take off.

These few moments of freedom are something Adam has never in his life experienced, outside a contained or fenced in environment.  Other children can walk beside their parents outdoors, or perhaps have the freedom to "run to the next lamp-post and wait for mummy" and I have often envied those simple freedoms but Adam cannot do this, for his own safety.  But with this harness, my son is safe but free.  It is truly the best piece of SEN equipment I have ever bought.  

If you happen to be in a similar situation, with a special needs child or adult who would benefit from such a harness, please do visit Elaine's website:  http://www.childharness.ca  It is well worth it and I highly recommend both her product and her service.


Elaine's Logo

Tuesday, 14 April 2015

"Dink!"

Adam is making some really exciting steps forward in communicating what he wants and asking for it.  Up until a couple of weeks ago, Adam showed no ability to tell us when he was hungry or thirsty or to show us what he wanted to play with, other than dragging us over to it (or screaming if he couldn't find it).  If I offered him a drink (speaking and signing the word) or the opportunity to eat, he would sometimes repeat it back to me, but he couldn't take the initiative to ask me for it in the first place.

But last week, completely out of the blue, Adam came over to me and looked like he was concentrating on something.  I watched him and waited until suddenly, he looked up at me and said, "Dink!"  At first, I wasn't sure what he had said as it was quite blurred but then he repeated it and when I said and signed back to him, "Adam do you want a Drink?" (putting a strong emphasis on the key word) he got all excited and repeated "Dink!"  When I gave him a cup of his milk/smoothie drink, he absolutely guzzled it down.

Then, a few days later, when I was picking him up from nursery, one of the workers told me they had been playing outside and Adam ran up to her saying, "Red!" At first she didn't know what he was referring to but then he tugged her towards the cupboard where the toys are stored (he normally completely ignores it) and once she was standing in front of it, he said, "Red!" again.  She looked inside and saw that there was a red trike visible behind a blue trike.  So she asked him, "Adam, do you want the red bike?"  He got all excited and started shouting, "Red!  Red!  Red!"  When she pulled the trike out of the cupboard, he climbed onto it and happily played for the next half an hour.

A couple of days after this, I was standing in the kitchen and getting Adam's dinner out of the oven, just before leaving for a meeting.  Adam left the lounge where he had been watching TV with his Dad and came to lean against the baby gate, peering up at me.  He watched me for a minute and then said, in a questioning voice, "Eat?"  I turned to him and said, "Adam, are you ready to eat?"  He gave me a big grin and repeated firmly, "Eat!" before running back to the TV.

On another evening, I was sitting at the table with Adam as he ate his dinner and he leaned over, grabbed my hand and tugged it towards his ear.  He pressed my hand against his hearing aid where I noticed that the pipe which connects the hearing aid to the ear mould had come loose.  I quickly reattached them saying, "Mummy fix!" 

In one final example, Chris told me that Adam had been playing on the trampoline in bare feet.  After a while, he sat down and his feet caught his attention.  He sat there examining them.  He looked at the sole of one foot, which was very dirty.  Then he turned his foot over and examined the top of his foot, which was clean.  He turned his feet over a few times, carefully examining the difference and then finally, pushed his foot over to Chris.  Adam didn't say anything, just offered his foot, but that simple moment of self awareness is huge - and it's new.

Each one of these events are quite small and simple.  For some, they may seem unremarkable because by the age of four, most children can speak in full sentences and easily convey what they want and need.  But this is not the case with Adam, up until now he has never been able to tell me that he is hungry or thirsty or that something is "wrong" in his world, he generally just starts crying, screaming or throwing toys and I have to run through a list of possibilities asking him each one until I find the clue - a slight moment of calmer behaviour, a moment of eye contact or very occasionally, a repeat of the word I have offered to him.  

So for Adam to understand what he wants or needs and then to be able to communicate it to me or to other adults caring for him is absolutely extraordinary.  It's a huge step forward.  There are of course still many things he cannot do - for example, any sense of "wet" or "dirty" to indicate the need for a nappy change is still absent - but these small steps indicate huge progress and they are so exciting.


Friday, 27 March 2015

My Beautiful (Vulnerable) Boy... (Age 4)

It was Adam's birthday, and I was racing down the A5 at speeds much higher than I'm prepared to admit publicly, following a phone call from the nursery manager saying my son's temperature was 41.8 degrees.  They were following emergency procedures and had stripped off his clothing, given him Calpol and two members of staff were sitting with him until I got there.  If his temperature had gotten any higher, he would have been in an ambulance.

I don't speed often, but a phone call like that on a day when I was at a meeting an hour's drive away from the nursery and speed compliance goes out the window...

It was ironic really because every year previously, Adam's birthday has been a very difficult one for both Chris and I.  We always want to celebrate our son's life and we cannot help but remember that his birthday is also the anniversary of his near death.  Both of us have, on many occasions, wondered how long it will take for the trauma to fade enough that we can just celebrate our son's birthday without looking backwards.  That morning had been the first birthday on which I woke up not feeling traumatised or on the edge of tears.  I can't say I was particularly impressed when my dear son decided to start his fourth birthday celebrations at four in the morning, but I was actually happy - and very aware of that fact.  

It felt like a good place to be, we gave him a "biiiiiiigggg huuuuuggggg" (his latest phrase, from Teletubbies) and helped him to explore his new "dark den".  For those who are unfamiliar with these, a dark den is basically a big blackout tent filled with sensory lights.  The idea is dual purpose - it provides a calming, dark place to help an autistic child calm down during a meltdown but in play purposes, it also allows him to explore with his senses - to experience different types of light and explore what light means.  In other words, it was an ordinary birthday morning, exploring presents and new toys.

Adam had been sick, having come down with a temperature on the previous Sunday, so we had kept him off school on Monday and Tuesday but he wasn't showing any other signs of illness, other than very broken nights - but those aren't unusual in his world.  With such limited communication skills, Adam can't tell us if he's feeling ill or if anything hurts so all we had to go on were visible symptoms and energy levels.  By Tuesday, he was bouncing off the walls and clearly completely bored of being at home, so on Wednesday, with a normal temperature, we decided to send him back to nursery thinking he would be fine.

That phone call plunged us both into panic mode and as I raced home from Oswestry, Chris raced back from his office in Stone.  Very unusually, that day, both of us were nearly an hour away from him and cursing that fact.  

By the time I got to nursery, Adam had fallen asleep in a pram but I was very grateful to see two members of staff sitting with and monitoring him, one of whom was the nursery manager.  As I held my hand over his chest, I could feel the heat radiating off him - clearly the thermometer had been accurate.  Standing in the nursery, I rang the doctor who asked me to take his temperature again - thankfully, it had dropped slightly but it was still 39.1 so she instructed us to give him neurofen as well and to bring him in.

This was a very hard moment for me because it was by then 1:20pm and I was leading a school Easter service at the church at 2:15pm with 200 children and over 200 parents.  I had no choice but to take Adam home where Chris was waiting, give him all the instructions he needed and go back to work.  I gave my mobile phone to our verger, asking him to signal me if Chris rang.  It was a horrible moment of desperately wanting to be with my son, but knowing I had a job to do.

By the time I got home, just after 3pm, they were back from the doctors and Adam was asleep on Chris.  By the time the doctor saw him, Adam's temperature had dropped to a nearly normal 37 degrees and, despite a complete examination, the doctor couldn't find anything wrong with him - ears, throat, chest, all normal.  

Unfortunately though, the doctor made an offhand comment to Chris (possibly not realising our history) that really shouldn't have been made.  Expressing his surprise at how high Adam's temperature had been, the doctor said, "Did you know that egg white cooks at 42 degrees?  The brain is made of the same basic material...."  I hope - I really hope - that he didn't realise Adam had neonatal meningitis and that, one of the many symptoms of his illness was an extremely elevated temperature or that the CT Scans taken in NICU showed brain damage as a result of the inflammation of his brain.  If he did realise that, then to say that such a comment was insensitive would be an understatement.  He's a good doctor, but we're new to the surgery, so even though all of Adam's notes are on the computer, I hope he just made a mistake through not knowing us well enough to realise the effect of what he was saying.

However, in the absence of any other symptoms, all the doctor could suggest was Calpol, Calpol and more Calpol and to ring if Adam's temperature rose again.  So Adam slept...and slept, and slept and slept.  3pm until 7:30pm, briefly waking to lie lethargically on my lap before going back to sleep at 9:30pm.  Anyone who knows us, or has read this blog over time, will know how unusual this is for Adam - he doesn't react to illness by sleeping, so that much deep sleep was incredibly worrying for us.  As a result, while he slept, all of my ability to cope and to hold it together abandoned me - I went to pieces, unable to stop myself from reliving the trauma of neonatal intensive care, of watching my son "shiver" with extreme fever and once more wishing I had known then what I know now about Group B Strep and so had been able to prevent my son's life threatening illness...and near death.  

Chris mopped up my tears, held my hand and ordered me to ring Wendy, even though it was out of hours.  We checked on Adam every few minutes.  Finally, allowing ourselves to sleep, the night was brief as Adam woke up at 2:45am and refused to go back to sleep until 4:30am.  We were both utterly exhausted and very much in survival mode.

Needless to say, now two days later, Adam is thankfully much better and it really must have just been a childhood fever, likely from a mysterious virus.  He's still having medication, now coughing so inhalers too, but is back to his usual energy levels.  Yesterday afternoon, he even came up to me and, for the first time ever, looked up and said hopefully, "School?"  

So this morning, I've sent him back to nursery after a long conversation with his teacher, and I'm confident that she will ring if he doesn't seem strong enough to be there.  

Four years old, and clearly still as vulnerable as ever.....as am I.

Sunday, 15 March 2015

Potential and Promise: Mothering Sunday

If you look around our churches, the images of motherhood you will find are really quite beautiful.  The most common ones you will see are of Mary and Jesus.  Typically, Jesus is either peacefully sleeping in his little manager or calmly sitting on Mary’s knee gently smiling and both of them with beautiful halos around their heads.  It’s such a peaceful scene… 

...It makes me wonder where I’m going wrong.   

Because one thing I can tell you for certain is that peace, gently holy smiles and halos definitely don’t figure in our house. 

In fact, if I’m completely honest with you, there are some days when I could quite cheerfully strangle my little cherub.   Days when he’s pushed every single button I’ve got…and then found a few more that I didn’t even know I had. There are days when I finally lose my temper and shout at him.  And then as his little face crumples, tears pour down his cheeks and he bursts into heartbroken wails because mummy is angry….my heart just melts and I feel so guilty.  I crouch down, sweep him into my arms and sign and say, “Adam, I’m sorry, Mummy was wrong.  Mummy loves you.”  

Many of you will know that my son is disabled.  Hearing impaired, visually impaired, autistic, asthmatic, developmentally delayed and with severe behavioural issues.  Some of you will know that my first ever mother’s day was spent in neonatal intensive care, sitting beside my son’s incubator, still not knowing whether he would live or die. To say that motherhood hasn’t been straightforward for me would be an understatement.

For me, motherhood is defined by two key words:  Promise and Potential.  You see, no matter how difficult some of our days together may be, I Promise to extend absolutely unconditional love to my son.  It doesn’t matter how much extra care he may need, how many mistakes he may make or how long he will depend on me, my promise to love him is written in my heart and wrapped around every fibre of my being. 

Then there is the other word – Potential.  Having a child with additional needs means that my language and expectations have changed.  I don’t necessarily dream of my son going to university or getting a fabulous job, I dream about my son being able to hold a conversation with me, or being able to cope with life without screaming, thrashing meltdowns.  No one really knows what potential my son may have, but one psychologist recently told me that he will only ever reach one quarter of his expected developmental age.  If he's right, then that means that when my son is 40, he will have a developmental age of 10.

Promise:  I will love my son, no matter what. 
Potential:  Who will my son become?  How will he develop?

In our Old Testament reading today, we hear about another story about Promise:  “I will make with you an everlasting covenant, my steadfast, sure love for David.”  Covenant is another word for promise but it is one that is greater, stronger, and goes deeper.  A covenant lasts forever.  This passage is talking about King David, the man whom Jewish history has long since regarded as one of the greatest kings ever to reign in ancient Israel.  History looks back at the story of David’s life and sees his success, his legacy.  But there were many times along the way when it seemed as though David would never really amount to anything.  From humble beginnings, he made many mistakes.  But for this reason, the story of David’s life is also bound up with potential.  If you had seen where David’s life began, you could never have imagined where it would end. 

You see, David wasn’t born in a palace, far from it.  David was the eighth and youngest son of Jesse and they lived in the humble town of Bethlehem.  It was his job to tend the family sheep and tending sheep was reserved for the LEAST esteemed member of the family or the servant with the LOWEST status.  Sheep are smelly; they’re not particularly bright and there is absolutely nothing glamorous about taking care of them.

But, just as a mother who sees her child and loves them unconditionally, God looked at David and saw Potential.  The mothering side of God said, “it doesn’t matter where you are now son, what matters is where you will be.”  So one day, God speaks to the prophet Samuel and tells him to follow his directions to find and anoint the new king of Israel…and God leads Samuel directly to David…the least likely king in history. 

Throughout his life, David experienced some incredible highs – he fought the giant Goliath and singlehandedly saved the Israelite army, he reconquered Jerusalem and he led the Ark of the Covenant into the city.  But David also experienced some incredible lows, he spent years hiding and running for his life.  He was determined to have Bathsheba as his wife, no matter what the cost – so he murdered her husband.

If God really can be described as a mother, then there must have been times she put her head in her hands and sighed, “OH David!  WHAT have you gone and done NOW?”  But, God loved her son and God had made a promise – an everlasting covenant of sure and certain love for David.  And, like any good mother confronted with a child who has gotten themselves into a monumental scrape, God still saw the potential in David.  In the end, David remained king over Israel until his death at the age of seventy and he ruled for forty years.  Out of the 150 Psalms in the Bible, 77 are either written by him or dedicated to him.  And through it all, God stayed by his side, as committed as a mother is to her child.

So, you’ve heard part of my story.  You’ve also heard part of David’s story.  I wonder – what is your story?  What do you bring with you this morning?  For you, is Mothering Sunday a straightforward celebration of being a mother, of having a good mother?  If so, I wonder if you can see the echoes of a mother’s unconditional love in the way God cared for her son, David.  Perhaps, your story, like mine, may be a touch more complex – perhaps your experiences with the idea and reality of motherhood are joined together with pain.  Perhaps your story may include the pain of a human mother whose love was flawed and left you with scars.  Perhaps your story may include the desire to mother, but this remains an unrealised dream and so today, brings the pain of disappointment.  Perhaps you have held a child in your arms…and perhaps you’ve also said goodbye and so today awakens grief.  Perhaps your own mother is now held in God’s arms and so you are here to remember and pay tribute.

No matter what your story is today, I hope you can see in David’s story a description of love, and of promise.  I hope you can see a God who loves all of her children…including you and a God who cares about the joys as much as the hurts and seeks to hold them in her loving arms.  Mothering Sunday can be a very complex one for many people but no matter what your story holds, I pray you may be able to consider another element of our bible reading this morning:

“Ho, everyone who thirsts, come to the waters, and you that have no money, come buy and eat.  Come buy wine and milk without money and without price.”  This verse describes an incredible love and an incredible promise that is extended to all of.  You cannot buy God’s love, because it is available free of charge.  You cannot overuse God’s love because it has no limit.  God the mother sees the potential in every single one of you.  God the mother holds your story in her arms.  And God the mother promises an everlasting love…to you.


So today, whether you are here to give thanks for human mothering, or whether you need to cling to God’s mothering, let us join together in and offer a prayer for mothers everywhere. Amen.