Friday, 9 March 2012

Embracing denial

*WARNING there is a shockingly awful gag at the end of this blog*

So, yesterday was the review meeting with the Boot Camp team where we met with representatives of Occupational Therapy, Physiotherapy, Speech & Language Therapy, specialist Dr's and nurses and the Consultant. The purpose of this meeting was for them to share with Sister in Law and I what has happened, what they are planning and what they are aiming for in terms of goals for Jake.

Needless to say, this was not the easiest way to spend an afternoon and I am glad that Jake is not aware of some of things we discussed; it is tough enough for those of us that love him.

The headlines are that Jake is both dyspraxic, which is related to thinking and doing and dysphasic, which is related to language. What this means is that he can make automatic movements, but not planned ones (which makes rehab very challenging as he freezes when he is asked to do something). When he finds words he still makes no sound and they are often the wrong ones (expressive dysphasia) and they are concerned that he has limited understanding of what is being said to him (receptive dysphasia). His processing of information is very delayed and they are being very cautious in their assessment of what he will achieve physically. Currently he is unable to consistently swallow and so is still very much dependant on his feeding tube.

There are lots of other elements to Jake's issues, but those are the biggies. Gutted.

And then, and then...we go and sit with Jake...

Now, at this point I think it would be useful to share something from that previously referred to, fun read 'Head Injury; A Practical Guide'. Apparently there is a model to describe the 'stages of the family's emotional reaction'. Of course there is.

Stage 1; shock, panic, denial 'Please God, let him live'
Stage 2; relief, elation, denial 'He's going to be fine'
Stage 3; hope 'He's still making progress, but it's slow'
Stage 4; realization; anger, depression, mourning 'He's not going to get back to his old self'
Stage 5; acceptance; recognition 'Our lives are now very different'

The thing is I think I'm stuck at stage 3. I have definitely experienced the emotions of stages 4 and 5 and yet I keep heading back to hope.

Anyway, back to yesterday...and then we go and sit with Jake; and it's like we were talking about a different person in the review meeting. He was so alert and engaged. SIL has bought him an ipad and they had a basic, silent, but perfectly reasonable exchange about it (we're getting very good at lip reading) and then spent some time playing with it together. I'm not suggesting he picked it up and starting using it, but he was following everything SIL did and was able to scroll down the screen.

So both SIL and I came away with the view that Jake has not yet decided to invest his effort in the Boot Camp team to the degree he does with us and, with the determination he shows us every day, will continue to exceed their expectations.

Essentially I have decided to reserve judgement (which is code for 'ignore') big chunks of what they said because I don't think they've got the measure of my Jake yet...either that or I'm actually stuck at stage 2, which is fine because I hear Egyptian cruises are quite nice :o)

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