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.