Wednesday, 25 December 2013

This Year, I DO Approve of Christmas!

This morning, I decided to be very kind to Mummy and Daddy and I let them have a nice lie-in - I even patiently waited until 5:30am before I woke them up!  I know, I know, try not to be too overwhelmed by my generosity.  It's not every baby who's as kind and considerate as I am, but just occasionally, I do like to be nice to The Staff to keep them sweet.  Besides, the longer I stayed in bed, the longer it would be before I had to face the single, worst day of the year - Christmas.  I couldn't help remembering last Christmas and how awful it was, so I can't say I had very high hopes for this one.  

Having brightly wrapped parcels shoved in my face and being told to rip paper even though I'm not allowed to rip paper at any other time of the year.  Strange people filling my house and refusing to leave no matter how much I shout at them.  The Staff insisting on playing jolly, jingly music all day and refusing my politely phrased requests to watch the single best television production of all time (I mean seriously, a day without Timmy Time is just not worth even beginning - don't they get this?).  So as I sat there playing with toys in my bed, I decided to put things off for as long as I possibly could and I watched the minutes tick by.

But eventually, Christmas must come to all of us, so I faced up to it bravely, and decided to confront the day head-on.  I SHOUTED for The Staff and notified them that I WAS AWAKE.  Sadly, they got to me far sooner today than they normally did - they weren't actually looking forward to Christmas were they?  I shook my head in despair and began to marshall the troops.  After a suitable period of giving directions, I had managed to get everyone up and dressed...and then I had to get re-dressed as Mummy did NOT approve of the Christmas outfit Daddy had chosen for me, apparently black trousers and a grey sweatshirt were not festive enough, even if they did match my mood....SIGH.  So we waited some more while Mummy ironed my soft tartan shirt and announced that this was acceptable for Christmas.  Alright already, can we get on with it yet??  What does a baby have to do to get things moving around here?  So, we went downstairs and faced....

The Christmas Tree.

I know, I know, it's a pretty thing, all sparkly and glittery - particularly when viewed during the hours of darkness, which is mostly the hours during which I am awake, but that's just not the point.  To me, it's a symbol of presents.  And I *hate* presents.  But alas, there was no escape...

Mummy pulled a brightly wrapped parcel out from under the tree and Daddy sat down beside me with it.  I took a deep breath and decided to get it over with...if I must...I must.  But then, something amazing happened.  

Daddy pulled off a corner of paper, just enough so I could see that there was something absolutely fascinating inside.  I wasn't quite sure what it was, but I knew I wanted to figure it out.  Hmmm....this might just be worth exploring further....So I ripped and I pulled until I found one of the very best things in the whole wide world!  You see, every time we've been in Asda over the last month, I've spied this toy and tried to pull it off the shelf for a little play. Just once, Mummy made the mistake of letting me have a play to keep me quiet while she did her shopping - this was a very good idea....but it was a much, much worse idea when she decided to take it away from me and put it back onto the shelf.  I had made my ideas about THAT particular idea VERY well known.  But today, as I discovered, Mummy had been very, very cheeky indeed because she must have gone back to the shop on a day when I wasn't with her and bought my favourite toy after all!  And look, here it was all wrapped up in paper for me to open today!  Wow!  

I did get a bit frustrated when I couldn't get it out of the box.  Who on earth wraps toys these days?  I've never seen so many tie-tags, plastic screws, so much tape and wrapping...anyone would think the people who made toys didn't actually want them to be played with!  But finally, MummyDaddy helped me and I was able to play with my new JBC alphabet toy and I surprised myself by realising that I was *actually* happy - even though it was Christmas!  I know, try to contain your shock, it really is extraordinary, but there it was.

However, right there and then, I conceded that one present wasn't *too* bad - but I'm not opening anymore.  I'm putting my foot down MummyDaddy, one did indeed surpass expectations but I shall not be opening any more presents today, and that is final!  

But suddenly, attention was diverted from me because at this point, Daddy lifted his head and sniffed the air, "What's burning?" He asked.  

Both MummyDaddy rushed out into the kitchen where Mummy had been cooking some eggs for her breakfast.  At first they thought it was the eggs burning....but no, it didn't appear to be those...they investigated further...

....and that was when the Very Loud Words I Am Not Supposed To Know started.  In fact, they started *quite* loudly so it was rather hard to miss them if you were, well, anywhere within a mile or so...  Indeed, there was rather a lot of rushing about in between The Words as MummyDaddy tried to sort out the burning, and that's when I discovered what had happened.

Mummy had done something stupid.

Really, really stupid.

So stupid, that it nearly destroyed Christmas (well far-be-it for me to suggest how possible this might have been...)

But thankfully, Daddy helped with the stupid part, or at least the not communicating part...

This is what happened you see:  Last night, Daddy put the turkey, wrapped in it's plastic wrapper into the cold oven to keep defrosting overnight and to keep dogs and cats away from the meat.  This seems reasonably sensible, but the problem was, that he didn't actually *tell* Mummy he had done this - she thought the turkey was in the fridge.  

So when Mummy decided to turn on the grill to preheat for toast to go with her Christmas breakfast eggs........

Well, you get the picture.  

200 degrees worth of picture.

Hence The Very Loud Words I Am Not Supposed To Know.

Daddy even had a tantrum.  That was very funny actually.  Usually it is me shouting and stamping my feet when I'm grumpy, but this time it was Daddy.  I was amazed to discover that Daddy does shouting and stamping *nearly* as well as me!  Then Mummy was shouting at him for having a tantrum and telling him it wasn't as bad as all that, the turkey was only a *little* bit blistered, the plastic came right off and she was *quite* sure there was none melted onto the meat, and no, Christmas wasn't ruined...well, it was really quite funny.  I just sat and watched them and smirked.  I mean seriously, grownups are just sooooo immature sometimes.  

After all, what's wrong with grilled turkey?  Even if it is still wrapped in plastic?  I mean, you're gonna cook the thing anyway!  So it was just a bit ahead of schedule.  No big deal...if all else fails, we can have chicken nuggets for Christmas lunch.  Trust me, no one will ever know the difference.

Eventually, The Staff chilled out a bit and decided the best remedy was another present for me.  Well, I guess I can't fault their basic logic as I should always be the centre of attention, but I wasn't sure about this idea of opening another present.  Still, Daddy sat down on the floor with me, while Mummy kept staring at her screen, and once again, he helped me to see what was inside. 

It was a set of three parcels from Mrs GodMummy, all brightly wrapped with glittery red ribbon.  Once I got going and could see inside, I realised that there might just be more than one nice thing in a present.  MummyDaddy, is it Scoop, Muck and Rolly?   Oooooo!!!!!  They have wheels!  I can roll them about on the floor!  MummyDaddy, this is the best present in the world ever (since the last one of course).  In fact, they were such good presents that they kept me busy for well over an hour.  I rolled them and rolled them and rolled them.

But eventually, MummyDaddy had gotten bored of watching me roll my toys about.  I think they might have opened a few presents themselves in the meantime, but as I'm sure you can appreciate, I wasn't watching *them*.  I was busy.  But then, it happened.  Mummy got one of those big smiles on her face and Daddy pulled out the biggest, huuuuugest, most ginormous present ever in the whole world ever!  This was the one I had been meaningfully thumping for the last few days, but they kept being mean and telling me to leave it alone.  But finally, it seemed that it was time to open it!  Just when I thought I had already opened all of the very best Christmas presents, it was time for this one!  I got so excited, that I just had to dance around and jump and sing.  I was so excited by this point that I wasn't listening when Daddy said this one was from most of my Aunties and Uncles, I didn't really care who it was from, the important thing was that it was here now.  

It took me a few minutes to really notice what Daddy was doing because of my dancing, but I helped him do some ripping and then, I. Saw. It.  Daddy had ripped just enough that I could see the picture on the front of the ginormous box and I froze.  I crouched down and I stared fixedly at that picture.  MummyDaddy, I know this toy, I have this toy at nursery and I love, love, LOVE this toy!  MummyDaddy, this toy keeps me busy for hours at a time when I play with it at nursery!  Is it really the same one?  Has it come here to our house?  Is it a Tower Slope and is it ALL for me???????  MummyDaddy, it's the best present in the world absolutely forever!!!

It took us a few minutes to get it out of the box, but I helped Daddy to tug on it and at first it was quite unstable and kept nearly toppling over on me, but that was because Daddy had to go out to His Shed (the place where magical Daddy tools are stored) to get a screwdriver.  Once he had put the little blue feet onto the bottom of my toy, it got much steadier and I played and played and played.  In fact, I played for so long that Daddy managed to get the turkey lunch ready while Mummy watched me and I was still playing.

At this point, they decided I was having so much fun that it would be good to leave presents at that.  There were loads more under the Christmas tree but that was ok, I didn't mind waiting because I already had the best presents in the world.  Besides, they told me that we're having Second Christmas in a few days when my big brother gets home from wherever else he goes, and so maybe we'll open the rest then.

There were of course other things that happened that day, like Nanny and Grandad coming round but I basically ignored them, then of course there was Christmas lunch which once again, was a definite high point of the day (mmmmm sprouts!), and finally there was nap time which I resisted quite strenuously on the grounds that it was taking me away from my new Tower Slope.  We watched some TV, ate some more, played some more and well, basically, that was Christmas.

But in the end, despite my misgivings, maybe TodayChristmas isn't *quite* as bad as LastChristmas.  I might just give it a go again next long as MummyDaddy come up with more good presents that is...

Happy Christmas everyone!  (And thank you everyone for my presents)

Friday, 20 December 2013

Christmas Miracles....In Unexpected Packages

'Tis the season for miracles, and in our house they seem to have come in rather unexpected packages.

Anyone who reads this blog regularly will know that Adam does not sleep.  In fact Adam does not sleep with such great success that nobody else in our house sleeps either - nor does anyone in our vicinity on the residential college corridor where Adam and I spend half of every week.  It is an exceptionally good night if Adam is *only* up twice.  It's far more normal for him to be up anywhere from four to nine times and, sometimes, to be up for the whole night.  

He is two and a half years old and his sleep pattern is worse than a newborn baby.

I find it mildly amusing that, while pregnant, people were warning me how difficult the first few months would be because of the disturbed sleep - they used the word "months".  It wasn't until after his birth and into his first year that I heard some parents telling me their children had taken years to settle into a more sociable sleep pattern, but most of these were looking at this from the perspective of (now) having teenagers, so while they fully empathised with our situation, even they were past the point of being in regular possession of grey faces and bags under the eyes to rival balloons.

Over his two years of life, we have been given numerous suggestions for what might be causing Adam's disturbed sleep - the first was sensory deprivation and that his dual hearing and visual impairment meant the darkness and silence of nighttime was the equivalent of this because even the ordinary sights and sounds that he may pick up would be significantly reduced.  Then the suggestion was that his asthma and the resultant coughing was keeping him up (this one is certainly and obviously true from the number of middle-of-the-night hospital runs we've done).  But finally, and recently, it was suggested that Adam's delayed social skills related to autism might be contributing to the disturbed sleep.  He may be unable to naturally learn the usual social skills a child develops to understand that when the house is dark and quiet this means his family are asleep and so should he be.  This was the first suggestion the autism might be a factor.

But just this week, during a marathon of hospital check-ups (preplanned because it was the first week of my college holidays so without commuting to Nottingham, it was easy to get around his consultants in one block) we were asked what seemed to be a very simple question by a nurse-practitioner filling in for one of his consultant's who was on sick leave:

"...And how does Adam sleep?" she asked innocently.

By the time I *stopped* laughing and asked for a definition of the word "sleep" she was smiling too.  

She began to quiz us on Adam's sleep patterns, when and how often he wakes up and when she learned that he can be awake and needing us up to every half an hour through the night, most nights of the week, she made the most amazing suggestion:

"What do you know about Melatonin?" she asked.

When we shook our heads, she went on to explain that Melatonin is the natural hormone produced by the body which regulates our sleep patterns and that it is well known that people with autism are extremely likely to produce less melatonin than other people without the condition.  She said that Melatonin supplements are available so long as the individual meets the criteria (as in significantly disturbed sleep on a constant basis) and of course is known to be autistic.  She suggested that we could consider this as an option if we wished and then discuss it with our consultant at our next appointment in twelve weeks time....then she started to laugh as we said:

"Oh no, there's nothing to consider.  Now please.  Preferably yesterday but definitely today and certainly not tomorrow!"

Taking one look at Chris's grey, exhausted face (he's been doing all of the day and night duty for the last three weeks because my broken foot prevents me easily or quickly getting to Adam's room at night) she offered to go get one of the other consultant's who would briefly discuss it with us.  

We then learned that if Melatonin is going to work, then it's going to work quickly and if it isn't going to (because this isn't the root of the problem) then we will also know very quickly.  For this reason, he agreed to give us a twelve week trial of the hormone but assured us that we would know inside three weeks if it was going to help Adam or not.

It took us *at least* half an hour to get to the chemist!

And that night, the miracle began.

After dinner, and as directed, we crushed a Melatonin tablet, mixed it with warm water (not the best solution, yogurt works better as we discovered on the second day) and gave it to Adam.  Admittedly, he was already very tired so it wasn't too surprising that he was starting to nod inside half an hour (the ideal time to give it is an hour before bed).  But here's the thing:

Adam fell asleep at 7:30pm and he slept, without disturbance and without even needing Dumbles until 4:30am!!  

By this point, he was wide awake and bouncing:

"Mummy, Daddy, is it morning yet?  I've had SUCH a good sleep!  I'm quite certain it's time to wake up!  Mummy, Daddy come now please! Right now!  At once!  This instant!  I Am Awake!"

We weren't quite so convinced it was morning as 4:30am is 4:30am no matter how much sleep you've had, but then we looked at the clock and realised it wasn't 10pm or midnight or even 2am as we've come to expect but 4:30!  

Adam had slept for NINE hours!  NINE!

What WONDROUS miracle is this????

So yesterday, I started doing some research. (Yes, I did give my child a drug *before* researching it - in the circumstances, wouldn't you?!) I found the Autism UK website ( where they had published an article stating that:

"Learning to sleep through the night is something all children have to do. But for children with autism, it can often be a difficult and seemingly impossible process. This, in turn, can have an enormous impact on their families. This guide explains why your child may have a sleep disorder, and what you can do to give them, and you, a more peaceful night...

By the age of one year, most children should be sleeping through the night. If after that time your child is regularly unable to sleep or if they have a period of good sleep which is disrupted then this constitutes a sleep disorder. It is important to be aware that all children are likely to have brief periods of poor sleep after illness, during holidays and festivals like Christmas or during periods of particular stress, such as exams or if somebody close to them is ill. After events such as these a normal sleep pattern should be established again within a few days. " Source: Sleep and Autism: Helping Your Child (Autism UK)

The suggestion we had previously received on social cues was included as they said:

"Children with autism may have difficulty understanding why and when they need to sleep. Problems with social cueing - that is learning why and in what order things should happen are common in autism and this may mean your child does not make the connection between their family going to bed and their own need to sleep." Source: 
Sleep and Autism: Helping Your Child (Autism UK)

But then came the key part:

"Melatonin: This is a hormone secreted by the pineal gland which has been shown to regulate sleep patterns in animals. There have been studies conducted which have shown that taking melatonin supplements can help to ward off jet-lag after long journeys. It is also thought that in children with autism, their patterns of melatonin secretion may be irregular so it is not that they don't produce it but that they don't produce it at the right times of day." Source: 
Sleep and Autism: Helping Your Child (Autism UK)

This really felt like an absolute EUREKA! moment (and yes, if I had been in the bath, I would have been tempted to jump out of it...) because this just makes sense. We knew *something* was waking Adam up and despite wondering about any combination of sensory deprivation, social cueing, asthma, nightmares and the desire for the comfort of Dumbles, there just seemed to be something we were missing because no matter *what* we did in an effort to comfort him, Adam was still waking up.

But the first night on Melatonin? Nine hours sleep. The second night? Admittedly there were two wake-ups, one caused by a rogue cat rustling about on the windowsill and the other by an asthma related coughing fit, but after falling asleep at 7pm, Adam stayed in bed until 6am.

Yes, you read that right: ELEVEN hours of sleep.

I haven't had that much sleep in nearly three years!

Do you have any idea how much better we feel today? There is some small part of us that is beginning to feel vaguely human again, and this after just two days.

Is this our Christmas miracle? If so, then Happy Christmas, because this is fantastic and could truly revolutionise our lives. That simple miracle of sleep only seems simple when you can get enough of it.

So, a toast to Melatonin!

And Happy Christmas :-)

Sunday, 1 December 2013

Here we go again...

On Friday afternoon, Adam started dribbling with cold.

By Saturday morning, he started to cough.

By Saturday afternoon, we were giving him inhalers - just in case.

By Sunday evening, he was coughing so much - and so continuously, that he emptied his tummy all over me.

By 2am Monday morning, both Chris and I were sitting on his bedroom floor -

Giving medication...watching...waiting...soothing...holding a small hand as it was pushed out of the bars of his cot, searching for Mummy.

By 4am, I was on the phone to Shropdoc and at their direction, by 4:30am on the way to A&E.

By 5am, a doctor had cheerfully announced Adam was definitely wheezing and Adam was put onto a nebuliser.

In the background, I heard the nurse ringing the children's ward cheerfully saying,

"We have a young man here, who I understand is well known to you, Adam Cheshire...?"

In the background I heard a good natured chuckle before,

"I'll print out his notes and send them up."

By 5:30am, we were on the paediatric ward - again.

Just two weeks after the last time.

"We'll keep him in, just for observation, but we can't hear wheezing, he doesn't seem *that* bad...?  Are you sure it's not just an upper respiratory cough caused by cold...?"

Once again, I explained Adam's history, his symptoms, the fact that a cough is the first sign - not the last.

And that there is a cough....and then there is a cough.

This cough is deep, bronchial, bends him double with the force of it, leaves him gasping for air in between coughs.  This cough is continuous.  This cough is so deep that my baby - my toddler - ends up vomiting from the violence of *just* a cough.

This cough - as I have explained so many times before - is the prelude to my baby going downhill and quickly.  In the past when I have thought this was *just a cough* and have kept him at home, I have ended up on the phone desperately begging for help when it becomes clear it is so much more than *just a cough* and I know my baby needs help...


So no, it isn't *just* a cough.  And no, it isn't *just* a cold.

And yes, as his mother, I do know him best - thank you for recognising that.  Thank you for admitting him *just* for observation...

...observation that lasted for forty-eight hours in the end.

But it was *just* a cough.

And so once again, I move into hospital with my son.

I camp on a hard cot covered in plastic wrap, a thin sheet and a seemingly thinner mattress...and I am incredibly grateful for it because I will not, cannot, leave my son alone in hospital.

In a brief, sudden sort of way, I become friendly with other parents camping beside their own children's beds and we exchange, "...and what are you in for?"

In sadness, I walk beside the rooms containing tiny infants hooked up to wires, machines, monitors - with radios playing in the room to simulate a family environment.  I see tiny babies cocooned in sausage shaped blankets wrapped around their whole bodies to simulate a mother's cuddle.

I watch nurses, rushed off their feet, but taking time out of their schedule to come into those rooms and spend a precious twenty minutes holding, cuddling, crooning to those babies.

I feel so sad when I see their families come in to visit for such short, precious times and I wonder at their circumstances.  I see one young mother trying to alternate between her busy, healthy toddler who wants to play in the nursery and her desperately ill baby in one of those rooms.  I cannot imagine how torn she must feel.

And I make my cup of tea, and try to entice my son into playing, reach through the bars of his cot to stroke his head, hold his hand and - when he will let me - I bring him out to hold him...until he thrashes to be allowed to return to where he is comfortable.

Then it's time for medication.  I distract my son while the nurses wrap a plaster around his finger and toe to take his "Sats" (pulse and blood oxygen levels).  I soothe him while they probe his ear for a temperature.

I hold him down, restraining thrashing limbs and kicking legs while they place his "Spacer" device onto his face and for each of ten puffs of his inhaler, count to ten, smiling, trying to soothe him, distract him...comfort him.  To suggest to him that such a thing is normal and good for him.

While I know it is as far from normal as two-year-old experience should ever have to be.

I hold him on my lap for the twenty minute saline nebuliser - I hold his thrashing body as best as I can, one nurse holds his arms and legs as he kicks, lashes out and another nurse holds the nebuliser onto his face...that was the worst one.

By the end of it, I am apologising for the bruises they are sure to have sustained.

And I am explaining yet again that my son is likely autistic and doesn't know his own strength, doesn't have the social skills to understand his actions.  Simply doesn't understand what is happening to him.

And once again, it breaks my heart.

Finally, a doctor briefly listens to your chest, takes the nurses word for it and says Adam can go home.  With a cheerful smile he says, 

"Feel free not to return.  We'd really rather not see you again....!"

We wait to be discharged.  Hours upon hours upon hours before finally, the medication is delivered from pharmacy, the discharge letter printed and all of this precisely five minutes after Adam has fallen asleep peacefully in his cot....

Not until two hours later is he ready to go home!

I push Adam's pram out into the fading evening light and the fresh late Autumn airs smells strange - there is no disinfectant in the air, no sounds of the institution, no beeping of monitors.  It all feels unreal and I marvel again at how quickly I get institutionalised.

I take you home, treat you to McDonald's - which of course you barely eat as you're not eating much more than fumes at the moment.  But it's ok because at least you're out of hospital.

I take you home and cuddle you into sleep, dosing you with inhalers through the night and watching, watching, watching to make sure you are safe.

Nobody gets much sleep that night....or in the nights following.

This week, we stay home from college as I try to protect you from more bugs that always circulate nurseries as children gather there.  Night and day, day and night, my husband and I take turns to dose you with medication, to comfort through the gasps and coughing and to worry as you refuse to eat more than a mouthful or two a day.

By Thursday, I decide to cheer myself up and hang some Christmas decorations early...and as I am balancing on a step gives way and I fall...landing awkwardly on my foot...

"It will be fine I said, a bag of frozen peas and some elevation will sort it out...."

I know it is more than likely broken, I recognise the pain from a similar injury fifteen years ago but remember that then, my Canadian doctor had to be convinced to X-Ray it because if I could walk, then it couldn't be broken.  After refusing to leave her office, she finally referred me for a non-urgent X-Ray where, four weeks later, they confirmed my foot had indeed been broken...but then sent me away because there was nothing they could do about it anyway.  We don't do anything with fingers and toes they said, just wait.

So this time, already tired from so many fights, I decided it would be fine.  I would be fine.  It would be better in the morning...

The next morning I try to get out of bed and still can't put any weight on it.  Hobbling to the bathroom, I am crying out from the pain and know I need to get it checked.  I cannot ignore this.

One more visit to A&E later, an X-ray and I'm in a plaster cast from the knee down for six weeks.

I cannot drive.  Cannot take care of my son alone because I am dependent on crutches so cannot lift him or rush to him if he needs it, cannot do the most basic things for him from preparing food to changing his nappy.

I am excused from college lectures on the basis of necessity.

My husband has to take unpaid parental leave from work to allow him to care for us both.

He waits on me hand and foot and tries to hide his exhaustion as he suddenly becomes Dad, Mum, Day Carer for me, Day and Night Carer for Adam...all while fighting a cold or bronchial virus himself.  

I keep asking him how he is coping, is he holding up?

"Ask me in six weeks," is his stock reply.

Happy Christmas.  No really.