Thursday, 21 November 2013

Holding on

Preacher tonight said there are people who feel far away but God is honouring the fact you haven't let go.

"When Satan tempts me to despair
And tells me of the guilt within
Upward I look and see Him there
Who made an end to all my sin
Because the sinless Saviour died
My sinful soul is counted free
For God the just is satisfied
To look on Him and pardon me"

(Before The Throne Of God Above lyrics © Warner/Chappell Music, Inc)

Friday, 8 November 2013

He is still the same...

This week my lovely boy was diagnosed with autism. Or is that diagnosed autistic? See how new I am to this?

I feel like my head is swimming so I'm writing in the hope that writing, as it usually does, helps give me the clarity and steadiness to my thoughts that I need. Because if I'm absolutely honest, I feel a bit blindsided.

It doesn't matter that in fact we have wondered over the years if he might be 'on the spectrum', we have even gone as far at times to say that yes, he has autistic traits but he IS autistic? Turns out it's more surprising than expected.

We went to his paediatric review with no other expectations than to get the incontinence nurse chased up and perhaps the suggestion of some more blood tests to investigate the reason he presents with sensory processing difficulties, speech and language disorders and learning difficulties. The Dr greeted us with the observation that it seems that the only avenue left unexplored at the moment is the autistic spectrum disorder avenue and on reviewing the notes it was clear to her that it would be the logical step. Of course we said yes and left the room so she could set up the room.

We sat in the waiting room while boy-child played in the playhouse and said to each other "no way is he autistic".

A couple of hours later the Dr said to us that our son is complicated and interesting and then calmly explained to us that our son fits the 'triad' of autistic impairments... difficulty with social communication, social interaction and social imagination and she recommended a diagnosis of classic autism, though moderate, with an additional speech and language disorder. She said that from the observations of the health professionals involved in his care and the various reports, that this is correct and actually when looking at his complex needs, autism better describes them rather than "well he has this and that and a bit of that other thing too".

The thing is that actually I had already disregarded autism as a diagnosis. My son, to me, seemed to be interactive and sociable... two things I had thought were contraindicated with autism. The Dr went through the various exercises and tests and explained to us how so many of his responses are learnt behaviours and responses. He didn't have a real grasp of how conversations and interactions really work and was largely disinterested in the person/interaction and tended to focus on the objects of discussion. At home and generally we know that he has a real need for familiarity and routine, he is comforted by it and alarmed by changes. His sensory difficulties we are already very aware of.

Since that day earlier in the week we have not had a lot of time to really think it through and process it which is why I'm writing. As the week has gone on, things have become a bit clearer, some of the Drs observations are making sense and we are seeing the autism... does that make sense? I don't even know what I think and feel about that. I don't even know where to start.

Please excuse me for a moment while I have a mini meltdown...

What is him? What is the autism? Are the two separate? If some of his responses are learnt, are they real? Are they meaningful? They are meaningful to me, to us as a family and my instinct is that that is what is really important but I don't want to miss meeting his needs. What about what other people will think of him - not that I care what they think but I do care how people will act towards him. I want to run away with him and protect him from 'them'. I feel like all the sticks in the marble tumble game have been yanked out, all the marbles have fallen down and I have to start all over again trying to understand, carefully plugging the gaps. And what about the future? Any hope we had that he would 'grow out of it' feel well and truly shot to pieces. What do I do with that?

OK, mini meltdown paused...

Practically speaking not a lot will change for us and boy-child in the short term. He has a full time individual needs assistant which will continue and he is having an educational psychologist review to ensure that all the bases are being covered for him so I feel that he is well provided for in that respect... after all we have fought every step of the way for him. He has his own potential to meet and as parents we make sure he has the opportunity to meet that potential.

He is a beautiful soul and my world is better because he is in it. This is something I can hold on to - he is the same child that walked into that assessment room as walked out of it. I don't yet understand autism and all of its implications though if you watch this space you'll probably travel that road with me.

Wednesday, 10 April 2013

Story Telling - a dancing student midwife

If you have been reading my ramblings for any amount of time then you know that I really can witter on. More recently my writing has been restricted to university essays so I don't write here as much as I would like to but I was inspired of late to come on here and have a bit of a muse.

The thing is, is I come from a long line of witterers, or as I prefer to call us (sounds kinder somehow), storytellers. It's highly likely to be the Irish in me though and I know this apple didn't fall far from the tree that is my Dad.

For as long as I can remember, family gatherings have always, and I do mean always, ended with us sat around a table or cuddled on sofas, telling stories of 'The Family'. Some of them I've noticed have evolved over the years, possibly embellished, possibly just added to as more of us have added dimensions to the story. New stories have crept in and I noticed with pleasure that a couple have crept in which involve my husband (of 11.5 years!) so that can only mean that he really is a part of the family now.

It doesn't seem to matter that the stories are told over and over. It feels to me while we are sharing family and friend memories that we are reminding each other of our connections. Of our shared experiences. Of the reasons why we enjoy each others company. Of sad times when we looked after each other and supported one another. Of times when we laughed so hard we cried... or ended up in A&E (invariably over Christmas but thats another story).

I've noticed my eldest start to join in and listen and laugh along which is brilliant to see because I feel that these stories are part of the glue that keeps us together and makes us stronger as a family (and extended family of wonderful friends) and more stable because we know each other well.

So I have been thinking about storytelling a lot lately, not only in my family situation either but in my midwifery world too. I've discovered that women love to tell their story. In fact they need to tell it. I've listened to women in labout tell me about previous births, about their labour so far, their dramas to getting to the hospital, of choosing names, of family reactions. It's like an unconscious way of making a connection with me, a connection which is essential for trust in pregnancy, labour and birth.

It's an amzing priviledge to be drawn into others stories and it is partly this that draws me to midwifery. It's hard to know sometimes what exactly I can do particularly as a first year, but connecting and enabling women to tell their stories,, being there while they create new ones... and to be a part of their stories forever is extraordinary. One day a woman will be telling her birth story to her family and she'll say something like "And there was this student midwife...".

How cool is that?

'My Dancing Student Midwife'

I have a short story about a student midwife - the CTG monitor I was wearing during my labout with my 2nd son kept slipping and for various reasons the midwife wanted a continuous trace. So the only option was for this student to press it to the right angle on my bump. The only way she could do that as I was standing up, was to stand very close and almost hug me. And I was swaying with my contractions. So what do I remember about that student midwife? She basically danced with me for 3 hours. I'll never forget her and she is part of my story, and my sons story.