Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Thanks Flo Social crappy services are coming today at 3pm two of them, to discuss my options!!!! although they never answered my questions in last two letters perhaps today te will!! will let you know. did i tell you we are getting ZERO help with Amelie, no respite what so ever....possibly our own fault, but when she had the serious arrest at xmas we said we would not accept carers anymore only a qualified nurse they could not accomodate us, they are too thin on the ground, i think they thought we would change our minds after a while, but we have stuck to our guns....carers are great to entertain your child, stimulate and play, do their bottoms, etc........but they have no confidence in suction especially passing catheters down to her nose to get the crap up off her lungs and so this is no good to us, it means you cannot go out and relax, when we have tried this she is struggling when we get back crackling and full of green secretions, they were wiping her nose with tissues and not suctioning her. will let you know todays outcome. Also i have won an award for adult learners,my tutors at college nominated me, i am going to salford university in may to get my prize, buffet and presentation....so chuffed. love les x > > > > > > Lesley- > > > Remember that Aubrie didn't get her aids til age 3 yrs! She has > > severe loss > > > in one ear, mild-moderate in the other. One thing Judith > > Bluestone said at > > > the HANDLE training is that there are no " critical " developmental > > periods. > > > Rather they are " optimal " . It's not that you won't ever get the > > skill if it > > > doesn't come at the " right " time, it just will come easier and more > > > eloquently if you do. At a later time, it may take longer or be > > less > > > strong. Does that make sense? So you know you want to get it > > going as soon > > > as possible. But you also know that asap doesn't mean right now > > given all > > > the other life-threatening stuff you are managing. It'll be ok. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Thanks Flo Social crappy services are coming today at 3pm two of them, to discuss my options!!!! although they never answered my questions in last two letters perhaps today te will!! will let you know. did i tell you we are getting ZERO help with Amelie, no respite what so ever....possibly our own fault, but when she had the serious arrest at xmas we said we would not accept carers anymore only a qualified nurse they could not accomodate us, they are too thin on the ground, i think they thought we would change our minds after a while, but we have stuck to our guns....carers are great to entertain your child, stimulate and play, do their bottoms, etc........but they have no confidence in suction especially passing catheters down to her nose to get the crap up off her lungs and so this is no good to us, it means you cannot go out and relax, when we have tried this she is struggling when we get back crackling and full of green secretions, they were wiping her nose with tissues and not suctioning her. will let you know todays outcome. Also i have won an award for adult learners,my tutors at college nominated me, i am going to salford university in may to get my prize, buffet and presentation....so chuffed. love les x > > > > > > Lesley- > > > Remember that Aubrie didn't get her aids til age 3 yrs! She has > > severe loss > > > in one ear, mild-moderate in the other. One thing Judith > > Bluestone said at > > > the HANDLE training is that there are no " critical " developmental > > periods. > > > Rather they are " optimal " . It's not that you won't ever get the > > skill if it > > > doesn't come at the " right " time, it just will come easier and more > > > eloquently if you do. At a later time, it may take longer or be > > less > > > strong. Does that make sense? So you know you want to get it > > going as soon > > > as possible. But you also know that asap doesn't mean right now > > given all > > > the other life-threatening stuff you are managing. It'll be ok. > > > > > > Michele W > > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley- Congratulations on your award. You certainly deserve the recognition! However, your family deserved some needed support/respite too! Argh! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley- Congratulations on your award. You certainly deserve the recognition! However, your family deserved some needed support/respite too! Argh! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley- Congratulations on your award. You certainly deserve the recognition! However, your family deserved some needed support/respite too! Argh! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Lesley, Just got this so gues you are either in the middle of the visit or you are just about done. Will be interesting to hear what options they suggest. I can't believe you are getting absolutely no support! If I were you, I would go for the direct payments option. That way, you would be able to train someone to care for Amelie and know it would always be the same person or couple of people. Recruiting can be a bit of a pain but I am sure you would find someone sooner or later. I am afraid I don't have a huge amount of faith in the privately commisioned carers Social Services now provide. They use care agancies who employ people with little or no experience and pay them minimum wages so there is also a motivation issue. Keep us posted on this one as I almost feel like taking up the mantle on your behalf. You must be sooooo frustrated! Of course the unfortunate thing is if your local authority does not do direct payments for children, so here is hoping. A lot of L.As say no employing a relative but under the circumstances, I would hope that they would appreciate this is exceptional as they do accept exceptional circumstances. On the lighter side of life, I am thrilled about your award! With all you have had on your plate, I am impressed that you even continued on the course never mind winning a uni place and an award to boot. Revel in the glow of this and in advance, enjoy the big presentation. Smiling in congratulations........ Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 What an afternoon.... first of all everyone came 20 mins early, the house was in chaos, school hols etc, i was just tucking into lunch, so they sat down and waited for me to finish, i apologised and said must eat it now never get chance otherwise in the meantime Amelie was a little star, she slept for a while and her sats monitor alarmed the whole time, she tends to role her tongue to the back when asleep and with lots of positional moving you can sort this out, but the two ladies ( one the manager) sat and looked on, at one point her sats were 91 in two litres so i gave her ambient 2 litre plus through a mask, then the milk pump started messing around and alarming...not charged up !! in between suctioning , that was three rackets of noise not to mention the noise of the oxygen converter, then the three other girls were on form running riot chasing Fleur all giddy, I was asked about why i declined help from a non qualified carer and i said well would you leave her with one!! trained nurse or dont bother!!, more questions like how do you get any sleep... i said look at us we dont sleep....i said we had been neglected by the authorities, and i was very annoyed, they said yes we know we have two letters from you, thats why we are here to help!!! At one point the lady asked how often do the machines alarm in a typical day...i relied always and al through the night, which night time is the worst...she looked horrified and said it was already driving her mad!!! i think i put our case across, i said we are not just dealing with a disabled child..charge is so complex it is not fully understood and this is part of the problem, on the whole they agreed that the panel who gave the first decision can not relate to the real life scenario, and so hopefully they will go away and revise this and they said sooner rather than later, as we have had no help since last November and that was three hours per week. so Flo we shall see if social services can sort this mess out, watch the Chan clan space!! love Les x Amelie and all > > Lesley, > Just got this so gues you are either in the middle of the visit or you are > just about done. Will be interesting to hear what options they suggest. I > can't believe you are getting absolutely no support! If I were you, I would > go for the direct payments option. That way, you would be able to train > someone to care for Amelie and know it would always be the same person or > couple of people. Recruiting can be a bit of a pain but I am sure you would > find someone sooner or later. I am afraid I don't have a huge amount of > faith in the privately commisioned carers Social Services now provide. They > use care agancies who employ people with little or no experience and pay > them minimum wages so there is also a motivation issue. Keep us posted on > this one as I almost feel like taking up the mantle on your behalf. You > must be sooooo frustrated! Of course the unfortunate thing is if your local > authority does not do direct payments for children, so here is hoping. A > lot of L.As say no employing a relative but under the circumstances, I would > hope that they would appreciate this is exceptional as they do accept > exceptional circumstances. > > On the lighter side of life, I am thrilled about your award! With all you > have had on your plate, I am impressed that you even continued on the course > never mind winning a uni place and an award to boot. Revel in the glow of > this and in advance, enjoy the big presentation. > > Smiling in congratulations........ > Flo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Hi Lesley, They couldn't have picked a better time to call. I'm sure they now realise just how difficult things are for you all. It's not just looking after Amelie (which is a mammoth task in itself) but you have to be able to have quality time with Darren and the girls. Well done for sticking to your guns. We are only now getting round to applying for respite for Jack and I honestly can't believe how easy it has been. The lady from the Children with Disabilities team has been to see us and is recommending 4hrs per week. We are going down the Direct Payments route(which was recommended by her) as we can employ someone who we know and trust and who knows Jack. Hopefully it will work out fine. Good luck Hugs Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Good luck Elaine. We did the direct payments thing last summer and it worked out really well. We are now looking to start proper recruiting. Last year, we were lucky there was a young woman we went to sign classes with who was able to work with us over the summer. Although we too have been given 4 hours per week for , the young woman is off to uni in Sept so we really have to start proper recruitment. We will use Sense as they have many experienced volunteers with sign skills and they also have the intervenors. Luckily, we can use the young woman while we recruit. You are lucky to have someone available who you trust. You will really find having an extra pair of hands or time out whichever you choose will be such a HUGE help. We tend to use the " extra pair of hands " as Elly is usually involeved in whatever the activities are and it works a treat as most workers are happy to help with either of the girls. We have been doing this now for about 3 years. Before direct payments, the local deafblind team sort of lent us their workers who were paid for the extra work by Social services. Flo > > Hi Lesley, > They couldn't have picked a better time to call. I'm sure they now realise > just how difficult things are for you all. It's not just looking after > Amelie > (which is a mammoth task in itself) but you have to be able to have > quality > time with Darren and the girls. > Well done for sticking to your guns. > We are only now getting round to applying for respite for Jack and I > honestly can't believe how easy it has been. The lady from the Children > with > Disabilities team has been to see us and is recommending 4hrs per week. We > are going > down the Direct Payments route(which was recommended by her) as we can > employ someone who we know and trust and who knows Jack. Hopefully it will > work > out fine. > Good luck > Hugs > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Good luck Elaine. We did the direct payments thing last summer and it worked out really well. We are now looking to start proper recruiting. Last year, we were lucky there was a young woman we went to sign classes with who was able to work with us over the summer. Although we too have been given 4 hours per week for , the young woman is off to uni in Sept so we really have to start proper recruitment. We will use Sense as they have many experienced volunteers with sign skills and they also have the intervenors. Luckily, we can use the young woman while we recruit. You are lucky to have someone available who you trust. You will really find having an extra pair of hands or time out whichever you choose will be such a HUGE help. We tend to use the " extra pair of hands " as Elly is usually involeved in whatever the activities are and it works a treat as most workers are happy to help with either of the girls. We have been doing this now for about 3 years. Before direct payments, the local deafblind team sort of lent us their workers who were paid for the extra work by Social services. Flo > > Hi Lesley, > They couldn't have picked a better time to call. I'm sure they now realise > just how difficult things are for you all. It's not just looking after > Amelie > (which is a mammoth task in itself) but you have to be able to have > quality > time with Darren and the girls. > Well done for sticking to your guns. > We are only now getting round to applying for respite for Jack and I > honestly can't believe how easy it has been. The lady from the Children > with > Disabilities team has been to see us and is recommending 4hrs per week. We > are going > down the Direct Payments route(which was recommended by her) as we can > employ someone who we know and trust and who knows Jack. Hopefully it will > work > out fine. > Good luck > Hugs > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Good luck Elaine. We did the direct payments thing last summer and it worked out really well. We are now looking to start proper recruiting. Last year, we were lucky there was a young woman we went to sign classes with who was able to work with us over the summer. Although we too have been given 4 hours per week for , the young woman is off to uni in Sept so we really have to start proper recruitment. We will use Sense as they have many experienced volunteers with sign skills and they also have the intervenors. Luckily, we can use the young woman while we recruit. You are lucky to have someone available who you trust. You will really find having an extra pair of hands or time out whichever you choose will be such a HUGE help. We tend to use the " extra pair of hands " as Elly is usually involeved in whatever the activities are and it works a treat as most workers are happy to help with either of the girls. We have been doing this now for about 3 years. Before direct payments, the local deafblind team sort of lent us their workers who were paid for the extra work by Social services. Flo > > Hi Lesley, > They couldn't have picked a better time to call. I'm sure they now realise > just how difficult things are for you all. It's not just looking after > Amelie > (which is a mammoth task in itself) but you have to be able to have > quality > time with Darren and the girls. > Well done for sticking to your guns. > We are only now getting round to applying for respite for Jack and I > honestly can't believe how easy it has been. The lady from the Children > with > Disabilities team has been to see us and is recommending 4hrs per week. We > are going > down the Direct Payments route(which was recommended by her) as we can > employ someone who we know and trust and who knows Jack. Hopefully it will > work > out fine. > Good luck > Hugs > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > Quote Link to comment Share on other sites More sharing options...
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