lorryw
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Can I suggest you take a look at www.disboards.com, they have a section about travelling to Florida (particularly Disney) lots of information, also info about Disney Disability Access Service Card. Have fun!
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Hello Jeanne, Im so sorry Glen is going through a rough patch. If its any consolation we are ( very strangely! going through almost identical issues with our lad. He had a seizure last August and we withdrew him from his care home. He had never had a seizure before and the hospital consultant felt it was the amount and combination of medication he was being given. We brought him home and started to look for somewhere new for him to live. This proved very difficult, mainly because Social Services were keen for him to have an individual budget and for us to find services ourselves. He is now 28 and we have tried so many different options, none of which have made him content He was fine for the first 6 weeks and then became aggressive towards us. Looking back I feel this was following the first visit by a social worker. To cut a long story short he had huge meltdowns everyday and we could no longer cope with him. We asked for help and were told to contact the police! We explained he had autism, severe learning difficulties, non verbal but we were still pointed in the direction of the police. He is now in a new care home and things are becoming even more fraught. Like Glen he is refusing to wear day clothes (he hides them) and will not go out. He only sleeps every few days and is very aggressive. He used to love his television (he watched cartoons and holiday videos) but turns it straight off and also turns off any television that is on. He has caused considerable damage to the home and they are at a lost as to what to do, as are we. The medical professionals seem totally out of there depth and he was even discharged by the learning disability nurse a few weeks ago. His GP has visited several times attempting to get a blood test but because he won't co-operate it is still left undone. We are so sad for him and feel we have let him down but don't know what to do to make things better for him.
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Thanks for all the recent posts but the original post was from 2005, several beds ago!!
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Hello Jeanne, I hope Glen has a happy day, be kind to yourself!
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Hello, I think your social worker will arrange this for you. I would contact her/him and ask for some advice. How is Glen (and you) doing these days? Loraine
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Great News Jay starts his news school next monthx
lorryw replied to JsMum's topic in General Discussion
Brilliant news! Its just what you all need. Good luck Loraine xx -
Sorry to hear you are having such a tough time. Do they have a parents support group or something similar? It would be great if you had someone who had been through a similar experience to talk this through with. Its very difficult to get a proper picture of what is actually going on over the phone. I know its difficult but you are already very stressed and distressed, perhaps your care manager could "field" the calls. They must have armfuls of assessments/information/medical notes etc to refer to without having to worry you.
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Dreadful people! They should all be fired, if they were poking fun at people because of race or religion there feet wouldnt touch the ground. I do sometimes wonder about the people who inhabit this planet.
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Its a difficult call to make. My friend and I both have sons with autism and severe learning difficulties. Both men are now 25 and we are in our 50's. Knowing what to do for the best is a nightmare for us. I know my son is happy to live at home with us but I dont have the energy anymore and neither does my friend. Our main sticking point is our other halves who are both shocked at the thought of sending our lads "away" I just want a bit of a "life" before I claim my pension. Good luck Jeanne, Im keeping everything crossed for you!
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I hope everything calms down for you , you have been to hell and back. The lack of help until things reach crisis is jaw dropping but sadly seems to be the case with so many families. Look after yourself. love Loraine
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Hello Jeanne, Can I suggest you take a look at the challenging behaviour foundation at www.challengingbehaviour.org.uk. They have a wealth of experience and the website is full of information and advice. They have sections about transition, housing options and an online magazine. Good luck!
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Hi Mumble, I have a close friend who has a severely autistic brother in law. He is about 60 now and has lived in residential care since the age of seven. His parents had very little to do with him and following his Mother's death my friend gently persuaded her husband and the rest of his family (all 8 of them) to become involved with his care. They have had several visits to the care home and he has visited them with carers. My friend has a severely autistic son and she was amazed how similar he was to his uncle. Her brother in law is now included in a family who he is probably unaware of, but is now once again part of.
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That sounds brilliant! He sounds happy and in good hands.I have been hoping that this would work out for you and Glen Love Loraine
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We had a letter yesterday from the ILF explaining that my son's funding will be withdrawn in 2015. He is autistic with severe learning difficulties and behaviour issues. The ILF is awarded to those recieving higher rate DLA and Social Service care. We and many others are very worried for the future. Local Authorities are reducing services to the absolute minimum and removing help to save money with no real thought to the future.