Saturday, 26 September 2015

Senior School. Serious drama. For me not him!

Inexplicably I find myself as the mother of a 10 year old. Even more inexplicably I find myself looking at senior schools where apparently I am meant to send him next September. Surely he isn't old enough for this! He's barely eating solids... walking... talking... oh wait... Time marched on and this is happening despite me.

It transpired I can no longer ignore the fact that he is growing up at an alarming rate. We received leaflets from school informing us of the open days coming up and that we not only need to visit them but also make a decision about which school he will attend by the 30th October. My head is currently a swirling hotpot of a million questions and worries about making the wrong decision and I hope you're not expecting a moment of clarity at the end of this blog post because you'll be disappointed!

I had fairly romantic ideas about the decision making process. I would look at the Department of Education website and Ofsted reports and it world then of course present me with an easy decision to make. My son would naturally be bowled over by the facilities etc and it would be job done. 

So I looked up the 3 schools which are the reasonable options given logistics etc. The first date was probably from my point of view the middle one in the desirable stakes. VERY poor GSCE results though they're ditching their headteacher. Poor history of dealing with bullying. Great sports facilities, close enough to walk or cycle. Good SEN results. His best mate is definitely going there.

He walked in and loved it immediately. Doh.

We still have two schools to visit. Top choice  (for me I might add) has excellent GSCE results and by all accounts good facilities etc. Smart uniform and really excellent reports of student attitude etc. It is 2 towns away so he'd need to get a school bus to get there. That would be a major pain with after school clubs. 

Bottom choice (again for me) is a school in the next town. No idea if there is a school bus or public bus. It is placed at the top of a very deprived area with lots of social issues. Last year results were terrible but they also have a new teacher who took her last school to 'Outstanding'. It's am academy and has had plenty of money chucked at it to develop its facilities. Some parents I know who had similar concerns about it to me, visited the other night and fell in love with it, as did their kids.

My son is, to his credit God love him, saying he wants to see all of them before making his decision and he is being so grown up about it. Apparently not agonising and waking up in the night thinking about it (what just me?) so it's just me having vaguely childish tantrums about results and options and opportunities. At the end of course the final decision is with him... slightly tactical of course - if I tell him where he's going and he hates it then it's my fault. Let him go where he judges best and if he loves it then he's happy, I'm happy, the universe is happy... and if he hates it then Mum can save him. I hope.

And it IS frustrating that not all schools offer the same... why can't it just be that it's just the 'feel' of the school is the only factor because all kids will have the same opportunities to reach their potential wherever they go? The education lottery is now open and at the moment it very much feels like my son's future is going to be influenced by the roll of the dice. I can do all I can at home but I'm not a teacher and certainly can't get him through his GCSEs if his school appears unable.

So here we have it, my angst filled blog post with no moment of clarity or pithy conclusion. You'll have to wait until we've visited the next two... or for his results in 6 years to discover whether he wins the lottery or not.


Thursday, 16 July 2015

"Electrifying" ~ That's my boy!

Those of you who have been walking with me for a while know a little about my lovely, special boy-child. We received his yearly school report this week and I wanted to share with you what a joy it was to read because as much as we love him and know him, and know what an amazing treasure he is, there is something wonderful about hearing it from others. 

He doesn't make the academic progress in line with his peers but we have been fortunate to have a teacher who agrees with us that these are not the important measures of progress in our son. She recognises his ear for music, his leadership skills and his creativity in dance and movement. She called one of his recent performances "electrifying" and has sought out opportunities to enable him to shine, thus increasing his confidence. 

We have watched our boy-child grow this year  into a thoughtful, funny, charismatic, creative 7 year old and it has been a delight to see. He seems unfettered by our worries about his future and he sees little in life that can't be conquered by a cheeky smile and quirky hand gesture. 

His physical, sensory, speech and developmental difficulties continue to be a challenge, particularly as the gap between his (excellent) progress and his physical age increases, and we have lots of questions and decisions to make as we go on, no doubt but right now he is supported and we are filled with confidence again that he will meet HIS potential. 

Things have changed for us as a little family; we accept that we aren't the easiest family to accommodate and we've subsequently chosen to surround ourselves with people who 'get it' and accommodate us anyway, who don't make decisions for us about whether the activity or day out is okay for him - not asking us to things because you think he won't like it is not cool (just for the record). He might surprise you... He surprises us every day. I can't say in complete honesty that I'm untouched by these things, because I'm only human (and I'm allowed to have a whinge on my own blog ;) ). Disappointment in people is heartbreaking.

Inevitably my update about boy-child covers a spectrum (slight pun intended) of rough and smooth. This week though I feel like his report carries a considerable amount of mileage  and I'm so proud of him. 


Sunday, 26 April 2015

Dissertation... the end and the beginning.

I recently finished the bulk of my dissertation and while it would be true to say a great sigh of relief was heaved as realisation set in that it was over, it would also be true to say that more has happened here than a document being completed.

The dissertation has loomed large as third year approached, and I do mean large. The essays up to now have been 1500, 2000, 3000 words and they have seemed long enough, so 8000 words seemed like a mountain. While it has been quite a climb and the going has been pretty rocky at times, the journey has been amazing and I've learnt something about myself which was surprising. I absolutely loved it.

Maybe (hopefully) my mark will be decent but honestly even if it is terrible (gulp) I'll be grateful because the process has opened my eyes to research and how to start looking at it in a new way. I'll admit to previously including references in my work without taking some responsibility for ensuring what I was quoting was, to my limited and novice eye, credible and useful. Learning how to critically analyse has been... wait for it... pretty cool. And now I honestly can't get enough of it. I read as much as I can and everything I read brings up more questions and I wonder what it would be like to carry out research of my own, to contribute in some way.

So right now I feel like I am on the verge of something, like I might even know where I am going. Like the dissertation I am prepared for this to be a process but the relief now is in knowing that this is just the start.

Sunday, 22 February 2015

Aspiring to hair nirvana

On the 24th December 2014, after a month of dithering I washed my hair with shampoo and conditioner for the last time. For the love of hair why????? I hear you say.... well I struggled with an irritable scalp for years and went through more brands of shampoo than you could shake a leg at, each brand getting progressively more expensive in my quest for scalp and hair nirvana. Finally I took to the t'internet and found that a hair revolution has been quietly taking place without me noticing it. 

People were throwing out their chemical shampoos and conditioners with wild and, dare I say it, joyful abandon. They were swishing their thick, manageable and shiny hair around in the manner of a proud arabian horse. 

Now I had heard what I thought was a myth about hair starting to spontaneously clean itself if it's left long enough and truth be told I was not convinced. Images of dreadlocks and greasy locks sprang to my (now apparently ignorant) mind and if I was really honest with myself I really liked that lovely clean smell after my hair was washed. But something had to change and perhaps desperate times called for desperate measures. 

So I started to read. It turns out that hair is quite capable of maintaining it's own micro ecosystem so to speak. While shampoo does clean your hair it does also shear away the good protective oils in your hair. This makes your scalp react by producing extra oil which in turn makes you feel like you have sufficient grease on your noggin for an all day breakfast. So you wash your hair and the cycle continues. There are also far loftier reasons for trying the no shampoo method which include less chemicals on your body and in the environment, less waste and less cost to mention a few.

I discovered that by allowing your hair to self regulate the amount of oil produced it does eventually reach a balance and although that waiting period does vary between people, you will eventually have hair that stays looking good for longer, with longer between washes which is always a bonus. 

My Nan as I was growing up used to tell me that Apple cider vinegar (ACV) essentially a cure-all and if you knew my Nan you'd understand this was completely standard. She also is a great believer in the power of bicarbonate of soda for.... well pretty much anything.  It seemed the majority of people who'd gone shampoo - free (or "no-poo") were using these things to 'wash' their hair. And we do wash our hair... you do realise that right? 

It took a month for me to work myself up to it and when I finally took the plunge this is what I did.
Mixed 1 heaped teaspoon bicarb of soda in with a cup of warm water. Wet my hair through then poured it over my hair and scrubbed it in for slightly longer than I would massage in shampoo. Rinsed it thoroughly. Then poured 2 tablespoons of ACV over the lengths of my  (very long, very thick) hair. Left for a minute or so and rinsed. Always balance your bicarb with an acidic rinse such as ACV, lemon or distilled white vinegar to avoid damage.

I won't lie, the smell in the shower initially was not great but it faded and when I came to dry my hair it went completely. I then used a little coconut oil on the ends and for a little shine over the lengths.  My scalp was still in a state of bliss 3 days later which was usually the time I want to shave it all off. 

I had heard worrying accounts of 'transition' but I think I got off fairly lightly with little grease however this might be because I regularly went 4 days without washing my hair (because the shampoo would irritate my poor head) so perhaps it had less to do. I did get a bit of a waxy residue and I'm reading that I need to adjust the amount of bicarb of soda so I'm in the midst of that currently. In the meantime to banish the waxy feel I've been doing an egg and lemon mask and honestly it's a miracle worker! Mix an egg yolk with the juice of a lemon, put it on your hair after you've wet it with as cold water as you can tolerate, leave it on for 10 mins then rinse throughly with cold water.

Don't use this mask warm or you'll end up with an omelette on your head. I'm not kidding.

I alternate ACV with a honey and lemon rinse which is lovely. Smells nice too. I've got some essential oils on order to make a spray to give my hair a nice smell because it doesn't smell of anything!

So I'm 60 days in and my hair looks healthy and strong, my scalp looks great (even allowing for the day I made an omelette on my head) and I find I look at food in a different way now. For example there is an avocado in the kitchen and I've heard it does wonders as a conditioner...


Wednesday, 3 December 2014

Nice NICE Guidance and sucking eggs

I haven't updated this blog for a little while but it seems fitting to break the fast with the wonderful news today that NICE guidance has finally been updated to reflect the evidence surrounding birthing at home, one to one midwifery care, delayed cord clamping and minimising separation of mother and baby.

You can view the updated guidance here:

http://www.nice.org.uk/guidance/CG190

While I am over the moon at the update I can't help the feeling that this is a little like teaching Grandma to suck eggs and actually most of this is good old fashioned excellent midwifery philosophy already but it would seem churlish to point this out at length.

What is key however is that while much of it is midwifery wisdom - what midwife will argue that one to one care and keeping mother and baby together needs new research and evidence to inform our practice with this - it is not yet in the public forum. Women have been scared out of having their babies at home and this latest guidance lays it out on a plate.

"If you are having your second or subsequent baby, and you are 'low risk', that is to say that you and your unborn child are healthy and you have had normal previous births, then giving birth at home is a safe option for you" (NICE CG190. My paraphrase)

It is interesting to note that the Guidance also points out that practitioners should not disclose personal judgements or views (1.1.9) about the woman's choice of birth place. I'm saddened that it needs to be laid out so explicitly. Presumably the 'haters are going to hate' (I'm talking about you 'Dr' Amy Tuteur) but it is exciting to have the updated evidence to hand, to be able to signpost women to the information they need to make an informed choice and this is at the heart of midwifery.

Monday, 5 May 2014

Dear Baby X

Earlier this year I observed an autopsy of an infant girl. This is my response to the encounter. There are no identifying comments in the text.
 
My assumption is of cot death though of course this is not diagnosable at point of autopsy.
 
I lost my own brother to cot death when I was 5 years old. I remember him vividly and I remember his absence in our home just as clearly. Our lives were never the same again; his loss is still felt now nearly 30 years later. Seeing Baby X brought so much of the pain back into stark focus and I wondered if the mortician had treated my brother so kindly and with such respect. I hope so. I wrote this letter because I was shocked by the violence of my feelings. I was literally knocked sideways by the strength of them and they seemed to have no resting place. I started to write the letter in my head and began to find some peace as I acknowledged her life and paid my respects. I can't bring her back to life, I can't heal the pain of her parents but I can lay to rest my own feelings. She matters and that is what my own heart needed to know.
 
 
Dear Baby X,
 
I wanted to write to tell you about the last time I saw you… the first and last time I ever met you. I have to confess to being unprepared for such a significant moment in my life but I want you to know that you changed my life and I will never be the same again.
 
I started to feel nervous as I got changed into scrubs to enter the mortuary, doubting the wisdom of coming but there was no going back and before I knew it I was walking into the room where you lay. I was first drawn to your sweet little face, long eyelashes resting gently on your rosy cheeks, for the life of me I would swear you looked asleep and my instinct was to pick you up and wrap you up warm because Baby you looked too cold on that table. Your hands were laid by your sides, fingers gently curled as if they had just let go, I imagined reaching out and your fingers grasping my own.
 
The tubes and needles used to try to bring you back to life were still there, evidence of the battle to save you and bring you safely back to your Mummys arms where you belonged, but also a reminder that it wasn't possible. Everything had been done but it wasn't enough and you had already gone.
 
The mortuary technician was so gentle with you and though you can't feel it any more, he was careful not to hurt you. He told me the story of your passing and I thought about your family and my heart hurt with their pain of losing you.
 
The procedure itself was hard to watch but I stayed with you and thought of the life you were meant to have, of the potential in your little body and in your face which looked so ready to smile and giggle. I imagined the happiness you had already undoubtedly brought to your family and the memories they will be holding on to, and though it may take them a little while to smile again, when they do it will be because they remember you.
 
When the time came for me to leave, I knew I was leaving you in good hands. That your body would be respected and treated with dignity, and returned to your Mummy so she can say her last goodbyes.
 
Most of all I wanted to let you know that you matter more than you'll ever know. I am… was a stranger to you and your family, but you touched my heart and I am grateful for you.
 
Yours,

Wednesday, 30 April 2014

Six months in... Autism not Autistic

We are nearly 6 months into our sons diagnosis with autism and I do feel we are still on the steep end of the learning wedge. I feel there is so much I don't yet know and there really is a lot of conflicting information out there and while I generally feel I can pick my way through it, what is becoming increasingly apparent is that while autism is a THING, it is not a thing firmly wedged in a box. Yes there is the triad of 'impairments' but there is a range within those too. So you have multiple spectrums within the spectrum. So this post is a bit of a collection  of the information we have gathered along the way as well as a record of how we're feeling and coping too.

We don't tell lots of people about his autism, mainly because the people who matter already know, but also because of the lack of understanding we have already encountered. Many people hear 'autism' and assume the person will be non-verbal, unable to make eye contact and hand-flap all day (stimming) but while these are certainly some characteristics on the spectrum, they are not every child.

We decided fairly early on that in terms of language, and the power we give the word autism in our lives, it wasn't going to dictate. Our son HAS autism. He ISN'T autistic. This is an important difference to us because it reminds us that his autism doesn't define him and though it is a part of him and part of what makes him the unique, wonderful and challenging person he is, it is not all he is.

SALT

Alongside the autism he has a pretty profound speech and language disorder primarily affecting his receptive language (what he can understand) and to a lesser extent his expressive language (which is improving largely due to the intensive therapy he receives). Early on he was diagnosed with verbal and oral dyspraxia which is a disorganisation in the messages between his brain and mouth/language centre, then a phonological disorder has subsequently been diagnosed and it is similar in that it means the person has difficulty organising speech sounds. He appears to stutter sometimes but its not a true stutter (so his SALT says anyway), just that his brain is thinking ahead and has to catch up, again its a disorganisation.

Sensory Processing

Before the autism came sensory processing disorder. I say before because his paediatrician says that autism better describes his range of difficulties, inclusive of the sensory issues. Sensory Processing however looms large in our minds all the time because it is how we make sense of the world and for him, well he doesn't have the luxury of making those automatic thought processes we do all day, every hour, every minute. He can cope reasonably well with noise. He can cope reasonably well with a light touch. He can cope reasonably well with a frantic activity happening in front of him (ie his brother jumping up and down, or the TV etc). What he can't cope with is all those things happening at once, its literally too much for his brain to make sense of at one time. We think of it like layers, too many layers of sensory input makes him anxious and frustrated and he generally responds by either becoming aggressive or withdrawn, though we are seeing more of the physical behaviour these days.

School

He is still in a mainstream school and has a fulltime Individual Needs Assistant (INA). He has a statement of educational needs from the local authority though the title of this will change later this year. Not that anyone has really told us much about it. We feel as though his needs are largely met in the school at the moment, mainly helped by the fact he goes to a special facility two mornings a week for SALT and his INA is brilliant. At the moment we feel very strongly that we don't want him to go to a mainstream comprehensive/secondary school and this is because while children at primary age are generally very inclusive and we have no issues with bullying etc, teenagers (bless them), often can't help themselves, its the hormones and my son doesn't have the capacity to understand this. He dances to his own tune and expects everyone to be nice and lovely and if I can try to protect him from this, I will. Also I don't have the confidence that he would be supported to be the person he can be, rather than held up as failing to achieve when measured against the national curriculum. Of course this is all early days and he is in year 1 at the moment so I'm open to the fact that it is a while away.

Well that's all for now, bit of a long one, thanks for reading if you made it this far :)