Wot no Blog?

Sorry!
I had an email with that subject line this morning from Dad, worried about us as I had not blogged. Strangely I had not blogged because I didnt want to worry folk I couldnt speak to.

Yes life has been a tad stressful.
Jonathan's situation has escalated to an intolerable level. His outbursts had increased in frequency and intensity culminating in a terrible day at College on Friday where the last straw was him tering a fire extinguisher from the wall and hurling it across the hallway. Thankfuly noone in the path.

However this is not a situation we can risk escalating at home and college although extremely supportive and helpful do have other vulnerable students for whome they have a duty of care. Besides all that Jonathan is distressed and had lost most tangible quality of life over recent months so it is a situation that MUST be sorted.

A trip to the doctors, became a trip to hospital and a constant repeat of the situation since Easter. Unfortunately most medics are of the opinion that if Jonathan has Down Syndrome then he obviously has challenging behaviours! Jonathan has never displayed chalenging behaviour even when he was a toddler. Yes he has had an occasional outburst of temper directed at something or some situation, but not like we are seeing now. With a temper there is a reason and a required outcome and a period of sulk as the temper subsides. With the episodes we are seeing there is no reason, the only trigger appeared to be a sudden unexpected loud noise. but even that trigger is not always present.
Jonathan becomes totally out of character violent, and throwing what he can reach then clawing at the floor or wall. once he is calmed he becomes listless, lethargic and confused. gradually coming back to his normal demeanour but with no recollection of what has happened but an awareness that something has happened and it is his fault.
He is becoming increasingly anxious in situations that resemble places it has happened. So he now is afraid to go into a cafe, will not sit at the table at home for meals, and over the last two weeks will not sit in the lounge with us in an evening at all.
he has even become anxious about being in Church and chooses to sit in the foyer until people gather there and then he takes himself off to the bus to sit.
At the moment he is spending time sat on his bed on the ward with earphones plugged in to listen to children's TV very quietly but at least it keeps the noises from the ward at bay. he prefers the curtains to be half drawn and was asking for the doors to be shut but that was not possible. So far in hospital he has not had an episode, but we believe that is because he is safe on his bed. Taking hi to outpatients for a scan the other day left him really anxious all afternoon.
We have the cardiologists now agreeing to put an implanted ECG loop recorder in him. Our hope is that this will tell us once and for all whther there is a link between his outbursts and the VT picked up on a previous ECG. We believe that this is the link and that it is his reaction to a feeling he is unable to explain.
Meanwhile we are awaiting a Psycology/psychaiatry report and the Neurologist to come and see him.
It is very worrying.

Of course there is still all the usually aorries and needs to be met at home. School going back has opened a whole can of worms in both schools. I have had to write letters to Joshua and Christina's school about minor and not so minor issues.
Last night Joshua was hit with a huge emotional overload as a result of his homework for RE.
Having not really had a chance to come to terms with his rapid deterioration of vision he was asked to write a time line of his hopes for his future.
Suddenly he is faced with his dreams and aspirations in tatters, no warning and no support. David and I were so not ready for it and had no idea how to support him!

I have spoken this morning to the Care and Guidance manager, but the problem is they just dont get it!
Joshua has suddenly gone blind.....can they not even begin to imagine what that might mean to them? What they would do how they might feel and whether they would then be ready to think about what they would be doing for a living in the future???
ARGHHHH! Some people!

Prayer for us all right now is very much appreciated.