We are creating a sensory room for the children! we had always plannd on utilising the area outside the kitchen window for Rosie's sae area. We originally pland on using the brick buildings that were orignally there, however these proved to be to dirty to clean up and would take to much lining and reroofing to be a viable plan. Then came the OT's recommendations and the councils architect looking out for somewhere to build something we dont want. The plans are drawn for Jonathan's room and the new bathrom right on the area planned for Rosie's area. Te architects plans actually do not even take into account the fact there are two brick buildings in the way!
We had decided to knock those buildings down to make a clear area...deck the area and then put a wooden building there for the sensory room. David worked the plan for the deck so that it incorporated making the acccess from the kitchen to the sensory room more or less level...bringing the level of the back porch up to the kitchen floor and making that into a far more useful space! We put a shed without windows 12 ft square onto the back end of the dec level with the playhouse...it looks lovely. We put dampproofing underlay down and laid carpet tiles on the floor then rang the man from www.orthodocs.com Robert came and measured up the room and quoted us for padding the floor and the walls and we arranged for the work to be done....and so today was the day!
Joshua and Christina and David and Robert all worked solidly all day long...stopping for a drink occasionally and a quick lunch
and by 5 pm the room was transformed. 
Mean time I was trying to get through the mountain of paperwork, hindered by paperwork that had not been returned...everyone wants original documents sending to prove different allowances, oppinions, diagnosis...but then they all forget to send them back and when I need the forms again for somthing else I have to chase and request and often apply for replacemens as the originals have been lost, destroyed forgotten about...ARGGHH. so after several phone calls I am now still waiting for proofs to send out to oher authorities andhave achieved very little in the way of diminshing the paperwork pile.
Next I tackle the form to request information held about us by Social Services. we are in the middle of a complaint against the local Authority, children's services dept. And the District Council. The Local Government Ombudsman has taken on the district but has askd us to take the Local Authority part through to their 3rd Stage Review Panel...in doing his I need to get information about a meeting I was unaware of happening, a Professionals Meeting. It is referred to in the Stage 2 investigators report...I have to write a report for the panel members to review before the date of the panel. I cannot complete that report until i am certain of what this meeting actually discussed or the conclusions it reached. I now need to get copies of proof of identity! More ARGGHH!
I get as far as I can with the above and turn to the wheelchair services battle. see post on 22nd January. Ihav spokn ith the Peadiatrcian who assured me she had written but had not used a form as she was unaware there was a form...she would look into that! feeling that 3 weeks was long enough to leave that without chasing again I rang them to find out what was happening. I need to confess I was not at all surprised really to find that nothing had happened! So the whole discussion ressumed and I managed to refrain from shouting but made it plain I was not at all happy. They would discuss it with the other lady and maybe get in touch with the Peadiatrician again. i put the phone down and then picked it back up to talk with the peadiatrician's secretary. I outlined the story and told her to expect the wheelchair services to contact her. She said she would have a chat with the Peadiatrician in the meantime. A short while later the wheelchair services rang me back to tell me they had faxed a form through to the peadiatrician....i am not holding my breath but maybe...just maybe we will get a referal to the seating clinic ithin a year of my first call????
Ok so that argument over and I am working out what next to look into when the phone rang again....it was the orthopeadic surgeon's secretary...Mr A has not yet heard from Mr G and anyway he has handed Eve's Spine to Mr G so will not be doing anything about the bracing. ARGGHH again...Mr G told us he would prefer Mr A to do the bracing as he was more local and could kep an eye on other developments. Secretary will cntact her counterpart and hopefuly something will happen whilst Eve is still breathing without too much problem???
Whilst all this is going on this afternoon, Rosie is bing very demanding...so much of the conversation is punctuated with me dealing with something problematic for Rosie. By 3 pm I knew I was not going to survive the evening unsupported so rang friend from Church who was here by 4 pm to take over Rosie watch. PHEW. Our usual carer had the first part of half term off to be with her daughter then requested compassionate leave for today and tomorrow as her Dad is very unwell...please pray for him and her at this time.
So the room is looking beautiful...the paperwork looks untouched...Rosie is in bed and I am done in!!!
I was looking for pictures of the garden before we started the work but can't find it just yet...I'll look and maybe add tomorrow!
This was before the playhouse was built in the very beginning. You can just about make out the brick buildings in the distance!
Oooh nearly forgot...amidst all the frustrating phone calls this afternoon my heart skipped a beat when I took one from the hospice! We are due to go monday to friday...realising this was a call from them I felt sick....thinking they were about to cancel us....quite the contrary...would we like o go in on Sunday instead of monday???? would we ever??? So respite comes 24 hours soner than expected...must remember to cancel transport for Monday!
I do not know what the future holds but I am glad I know who holds the future!
We had decided to knock those buildings down to make a clear area...deck the area and then put a wooden building there for the sensory room. David worked the plan for the deck so that it incorporated making the acccess from the kitchen to the sensory room more or less level...bringing the level of the back porch up to the kitchen floor and making that into a far more useful space! We put a shed without windows 12 ft square onto the back end of the dec level with the playhouse...it looks lovely. We put dampproofing underlay down and laid carpet tiles on the floor then rang the man from www.orthodocs.com Robert came and measured up the room and quoted us for padding the floor and the walls and we arranged for the work to be done....and so today was the day!
Joshua and Christina and David and Robert all worked solidly all day long...stopping for a drink occasionally and a quick lunch
and by 5 pm the room was transformed. Mean time I was trying to get through the mountain of paperwork, hindered by paperwork that had not been returned...everyone wants original documents sending to prove different allowances, oppinions, diagnosis...but then they all forget to send them back and when I need the forms again for somthing else I have to chase and request and often apply for replacemens as the originals have been lost, destroyed forgotten about...ARGGHH. so after several phone calls I am now still waiting for proofs to send out to oher authorities andhave achieved very little in the way of diminshing the paperwork pile.
Next I tackle the form to request information held about us by Social Services. we are in the middle of a complaint against the local Authority, children's services dept. And the District Council. The Local Government Ombudsman has taken on the district but has askd us to take the Local Authority part through to their 3rd Stage Review Panel...in doing his I need to get information about a meeting I was unaware of happening, a Professionals Meeting. It is referred to in the Stage 2 investigators report...I have to write a report for the panel members to review before the date of the panel. I cannot complete that report until i am certain of what this meeting actually discussed or the conclusions it reached. I now need to get copies of proof of identity! More ARGGHH!
I get as far as I can with the above and turn to the wheelchair services battle. see post on 22nd January. Ihav spokn ith the Peadiatrcian who assured me she had written but had not used a form as she was unaware there was a form...she would look into that! feeling that 3 weeks was long enough to leave that without chasing again I rang them to find out what was happening. I need to confess I was not at all surprised really to find that nothing had happened! So the whole discussion ressumed and I managed to refrain from shouting but made it plain I was not at all happy. They would discuss it with the other lady and maybe get in touch with the Peadiatrician again. i put the phone down and then picked it back up to talk with the peadiatrician's secretary. I outlined the story and told her to expect the wheelchair services to contact her. She said she would have a chat with the Peadiatrician in the meantime. A short while later the wheelchair services rang me back to tell me they had faxed a form through to the peadiatrician....i am not holding my breath but maybe...just maybe we will get a referal to the seating clinic ithin a year of my first call????
Ok so that argument over and I am working out what next to look into when the phone rang again....it was the orthopeadic surgeon's secretary...Mr A has not yet heard from Mr G and anyway he has handed Eve's Spine to Mr G so will not be doing anything about the bracing. ARGGHH again...Mr G told us he would prefer Mr A to do the bracing as he was more local and could kep an eye on other developments. Secretary will cntact her counterpart and hopefuly something will happen whilst Eve is still breathing without too much problem???
Whilst all this is going on this afternoon, Rosie is bing very demanding...so much of the conversation is punctuated with me dealing with something problematic for Rosie. By 3 pm I knew I was not going to survive the evening unsupported so rang friend from Church who was here by 4 pm to take over Rosie watch. PHEW. Our usual carer had the first part of half term off to be with her daughter then requested compassionate leave for today and tomorrow as her Dad is very unwell...please pray for him and her at this time.
So the room is looking beautiful...the paperwork looks untouched...Rosie is in bed and I am done in!!!
I was looking for pictures of the garden before we started the work but can't find it just yet...I'll look and maybe add tomorrow!
This was before the playhouse was built in the very beginning. You can just about make out the brick buildings in the distance!Oooh nearly forgot...amidst all the frustrating phone calls this afternoon my heart skipped a beat when I took one from the hospice! We are due to go monday to friday...realising this was a call from them I felt sick....thinking they were about to cancel us....quite the contrary...would we like o go in on Sunday instead of monday???? would we ever??? So respite comes 24 hours soner than expected...must remember to cancel transport for Monday!
I do not know what the future holds but I am glad I know who holds the future!
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