Saturday, 26 November 2011

Communication: A Special Saturday Post

Prior to having little H, I taught children with autism for many years, some severely autistic, non-verbal children amongst them.  I have been asked countless times “Will he ever speak?” and whilst no-one can know for sure, with each passing year the chances decrease, though I have known a child who spoke his first words at the age of 11.  I learnt that there is so much more to communication than words, it is a highly complex process.  One child I taught had a vast vocabulary, yet had no idea what the words meant.  He was echolalic, simply repeating phrases he had learnt.  Whilst many times he used words appropriately – “Good morning” for example, it was impossible to have a conversation with him.  He simply didn’t understand.  He was no more able to communicate than a non-verbal child despite appearing to be at an advantage.  Words to him were sounds and held no communicative intent. 

There are so many stages that a typically developing child goes through before they use words effectively to communicate.  First they must realise they need to communicate, that people don’t automatically know their thoughts - I taught many very able, verbal children with autism who still struggled with this concept.  Young babies communicate initially through crying to express hunger, tiredness and discomfort and mothers can often differentiate between the different types of cry and work out what their child needs.  This communication quickly progresses, and even whilst still very young, babies begin to learn the subtleties of turn taking in conversation and will babble in response to a parent, beginning even to use some intonation in their sounds.  Eye contact is also a key feature in communication, verbal or otherwise. 

There are many forms of non-verbal communication; eye gazing, that is looking towards a desired item, pointing, taking a parent to an item or placing it in their hands – with for example something that needs to be opened – are all effective ways of communicating desires without speech.  Then there are the more obvious, recognised methods of non verbal communication, such as PECS, Sign language and Makaton. 

There are so many methods of communicating, that I often thought parents placed too much emphasis on verbal communication and speech.  Yet now as a parent I know how desperately you want to hear your child say “Mum”.

As a parent I have heard myself ask “Will he ever speak?” and been devastated by the response.

I cling to the hope that Little H will one day learn, but in the meantime we support his communication in other ways.  His vision is poor so Makaton or other basic sign language isn’t really appropriate.  Even if it were, he has very little controlled movements so would be unable to use the signs himself.  His elder brother, Cheeky (now nearly 3) used baby signing when he was younger.  I’d like to clarify, I’m not a ‘hippy Mum’ or anything, but he was having such terrible tantrums – I mean, banging his head on the floor in frustration kind of tantrums – because I couldn’t understand what he wanted that it seemed only fair to give him some tool of communication before his speech developed.  It worked amazingly well and I was interested to see that even when he began speaking at around 13 months, that he would revert to signs when tired or anxious, once repeatedly using the sign for ‘finished’ when he was scared on a boat trip, despite being well able to talk at this stage.  It is sad then, at nearly two years old, his younger brother is nowhere near achieving the level of communication that Cheeky had at 9 months.  Instead, we use something called ‘on-body signing’.  It’s a signing system for children with visual impairment and moderate to severe developmental delay.  They can feel the sign as they are said, so are not relying heavily on vision as with other signing methods.  It’s quite simple – the sign for hello is shaking his hand, goodnight is tracing your fingers down his face – as if encouraging him to shut his eyes.  We also use objects of reference – everyday items that he can hold, and hopefully see, that indicate what will happen next: a nappy when I’m changing his bum, a wet flannel at bath time, keys when we are going out.  I also try and use song to indicate time of day as he loves music.  We have a ‘Good Morning’ song Cheeky and I sing each day when it is time to get up and I use the same lullaby each night at bed time.  I am not sure how much of these cues Little H is aware of or picking up on but hopefully with time he will begin to recognise the pattern.

And how does Little H communicate with us?  Well, bless him, he has THE most wonderful smile which indicates he is happy, and a right cheeky chuckle that makes us all laugh too.  When in pain or discomfort he cries and when hungry he has this funny little tongue roll thing but I think that might be involuntary.  It is a shame that he is currently being NG tube fed as his most effective and intentional communication so far has always been when eating.  He very definitely will turn his head away and push his tongue out if he doesn’t want something – as if to say “There is no way you are putting THAT in my mouth Mum!”  He also makes a funny shouty noise if I’m not feeding him fast enough as if to say “Come on Mum, I’m starving!”  It’s hilarious because it’s a really cross sounding shout too.  It’s a shame that nothing else so far has elicited the same level of intentional communication but hopefully after the winter, if his health starts to pick up and we manage longer than a week between chest infections then we might be able to start feeding orally again.  At least I know though that he has the capacity for intentionally communication though and that is a start.

And maybe, just maybe, one day he’ll be able to look me in the eye and say “I love you Mum” but until then, we’ll keep working on the other methods.

Friday, 18 November 2011

Reasons to be cheerful ... 1, 2, 3 ... A Special Saturday Post

This week’s theme for special Saturday is things we are grateful for.  I think it does us all good to every once in a while to consider the positives in our life.  So, in a break from my usual tales of woe and melancholy, I’m attempting a more upbeat post, reflecting on the things in my life that make me happy.



1.     I am truly blessed to have two beautiful, wonderful sons.  Especially considering it was only four years ago I was told I would be unlikely to ever have any children and then told to make the most of my first pregnancy because it was the only one I’d ever had.  Honestly! 
2.    I have a fantastic husband who loves me and I him.  We have been through thick and thin together – the illness and deaths of one parent each, seriously ill siblings, infertility and the subsequent gruelling tests and treatments, the endless tests and investigations we’ve been through with Little H, little H’s diagnosis (or the lack thereof) and the fear and devastation caused by his epilepsy – and yet we can still smile and laugh together.  We don’t get to go out together any more (who on earth would look after Little H for us?) but we are closer than I ever thought possible, bonded by the shared love of our two beautiful boys.
3.    ‘Cheeky’ is an amazing child!  I doubt a better big brother for Little H could be found.  With only 14 months between them, things could be so much more difficult if he was any other way.  But he is compassionate, caring and considerate.  Not the typical traits of a ‘terrible two’ year old.  He adapts easily to the changes forced upon him – the sudden ‘sleepovers’ at Granny’s when we’re in hospital again, the cancellation of plans because Little H is too sick to leave the house again.  He never makes a fuss.  He just accepts that this is the way it is and gets on with.  I thank my lucky stars for him.  Cheeky is a miracle – the child I was never supposed to have.  Fertility treatment had been stopped because I wasn’t responding.  Scans showed nothing was happening and I was booked in for invasive surgery and further investigations.  After my pre-op, when I’d booked the time off work and geared myself up for the operation, just days before I was admitted to hospital, I took a pregnancy test ‘just in case’.  It was positive and it turned out I was already 8 weeks pregnant!  I still can’t explain it, I’d been having scans!  But he arrived at such a crucial time in my life – my father was dying of lung cancer and this unexpected baby brought a ray of hope to an otherwise very difficult time in all our lives.  Cheeky kept me going after my dad, his namesake, died just four weeks after his birth.  He was a reason to get up in the morning.  Through the dark and difficult times with Little H, Cheeky has remained my shining light.
4.    I am grateful that Little H came to our family.  When I think of all the other families in the world he might have gone to, I realise how different things could have been.  There are so many horror stories in the news about children abused and neglected by their parents.  I dread to think what would have happened had Little H gone to a family like that.  I doubt he would be here now.  I know our vigilance and persistence has kept him alive.  I know there are occasions when we have saved his life.  I thank God then, that he came to us and not to someone who couldn’t give him the level of care he needs and deserves.
5.    Following on from that, I am glad that my past experiences have helped me be a better mother to Little H.  I have worked as a therapist for children with Autism, supported families of children with special needs, and been a teacher in an autistic specific special school, all prior to having children.  The knowledge and skills I gained in these roles has helped to ensure I can access all the support Little H needs.
6.    I am also grateful that, although it is difficult, I have been able to give up work to care for Little H at home.  I genuinely don’t know what I would have done had that not been possible.  I can not think of any appropriate childcare that could provide for him and I doubt I would have been able to do a day’s work anyway for worrying about him.  I don’t doubt I would have had a nervous breakdown from the stress of it all.
7.    I have a great family support network.  My mother, father in law, brothers and extended family all do whatever they can to support us.  In particular they all do their best to ensure that Cheeky doesn’t miss out because his brother is ill.
8.    And last (but not least) I am eternally grateful for the wonderful friends I have met through facebook and twitter.  They have provided immeasurable support and understanding through some very difficult times and have shared and delighted in the successes and achievements along the way.

Sunday, 13 November 2011

Six months on from an epilepsy diagnosis

Last night, a nurse in the high dependency ward told me I had changed so much in six months. Have I? I thought back. Just six months ago we didn't know the reason why our son stopped breathing and went blue once a week. Six months ago, four EEGs had come back normal and we had taken to videoing these ALTEs (apparent life threatening event) as the staff in A&E referred to them, in desperation that someone would know what they were and what to do. Six months ago we hadn't had the diagnosis that would change our lives.  

Prior to diagnosis we had first been told 'it's nothing to worry about it'll never happen again' (the first time he stopped breathing), 'it's because he is unwell, he will grow out of it', 'it's a breath holding attack' and 'the strongest human urge is to breathe-he'll be fine'. After weeks of it happening time and time again, we were told that they didn't know what was happening and because of his complex needs there was a strong possibility he wouldn't start breathing of his own accord. We were trained in basic life support and we tried to carry on living our lives. 

We even went on holiday. God if we realised then what we know now we would never have taken that risk. We were visiting family in Ireland, who live out in the middle of nowhere. It's an hour to the nearest city and in turn the nearest hospital. As luck would have it, on the day he had what has been his worst seizure to date, we were visiting relatives who lived next door to a paramedic! Seven minutes in he finally started breathing again. Seven minutes might not sound long but it was an eternity. You can not begin to imagine the shade of blue he had turned in that time. The 20 minute ambulance ride, with blue lights and sirens, which followed also seemed to be an eternity, but nothing in comparison to the 45 minute car journey my husband had to make not knowing whether his son would be dead or alive when he finally reached the hospital. We vowed never again to be more than the 10 minutes away from a hospital that we are used to. And months later, after diagnosis, our paediatrician confirmed that it simply wasn't safe for us to go anywhere that was any distance from a hospital. We have not attempted to leave the city since!

When the diagnosis of epilepsy finally came, I expected to feel relieved. A name. A reason. A known enemy. And more importantly, something that could be treated. But in reality I was scared. If it was epilepsy then it meant it would keep happening again, at least until we'd got it under control with medication that is. Little did I know how devastating epilepsy could be. Little did I know that I was nowhere near scared enough!

It's not like on the telly you know? Its not all flashing lights and convulsions. My son simply stops breathing. No twitching, no jerking. Nothing. The only other outward sign is that his pupils dilate. And of course that he turns white, then grey, then blue, then navy blue and sometimes purple. Not just a blueish tinge around the lips, his whole face and body. We have since discovered he desaturates very quickly. For those not familiar with the ridiculous amount of medical jargon that is now part of my everyday language, this means that he has little or no oxygen in his blood. This lack of oxygen quickly prevents his heart from working properly and it starts to slow down. He basically begins to go in to cardiac arrest. I genuinely never realised epilepsy could be life threatening. I doubt I would have wished so hard for a diagnosis if I had realised just how dangerous it can be. 

Of course, treatment is an option. Initially we were given a 50% chance that his seizures could be controlled by medication. Not the best odds I thought but a friend pointed out that before diagnosis I would've jumped at a 1 in 2 chance that he would never stop breathing again. So I perked up a bit. But this wasn't what I'd expected. I thought you could take medicine each day and that would be that. Sure, maybe a couple of attempts to find the right medicine or combination of medicines but not this; powerful drug after powerful drug being gradually introduced with sometimes devastating side effects, then slowly weaned back off them whilst gradually introducing a second. Each time losing your son for days, sometimes weeks, at a time to a drug induced haze while his brain and body adjusted to the powerful anti-epileptics, at one point, the effects of which were so severe that he lay completely lifeless in the high dependency ward for two weeks, hooked up to oxygen and tube fed. It took him a further month or more before he could hold his head up again. He is still being tube fed after not regaining the ability to swallow safely. And after all that taking its toll on his tiny body, we reach the label: 'medically intractable' –that’s epilepsy that is unlikely to ever be controlled successfully by medication. So that's where we are at now- 'the drugs don't work' as they say and we're waiting to start a trial on a ketogenic diet that may (or may not) help to control his seizures.

It is hard to believe that has all happened in six months. That six months ago I didn't have this horrendous diagnosis of 'life threatened' hanging around my head, making me scared to leave the house. six months ago I didn't have to cart oxygen and a bag and mask and midazolam with me everywhere I went and my house didn't resemble a hospital ward with sats monitors and oxygen tanks and syringes and tube feeds. Six months ago I hadn't had to resuscitate my son at the side of a dual carriageway while cars drove past or bag and mask him at a friend's house after dinner. Six months ago I hadn't received booklets from well meaning nurses detailing how I could plan for his funeral. 

So yes, I imagine I have changed a lot in the last six months, but really, is it any wonder?