lorryw
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Posts posted by lorryw
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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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Brilliant news! Its just what you all need.
Good luck
Loraine xx
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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.
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Good luck Jeanne,
I will think of you on Monday morning and keep everything crossed.
Take care
Loraine x
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Hello stranger,
Lovely to hear from you, sorry you are having such a tough time at the moment.
I cant believe your baby is almost 3! Hopefully things will improve for your little ones.
Take care and lovely to hear from you.
love
Loraine xx
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The respite is for you. Why on earth did they have to ring and tell you he had hit someone? It is over and dealt with and you can do absolutely nothing about what happened, except sit and fret and worry.
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Hello Jeanne,
I totally sympathise. My sons social worker has been off sick since August but it wasnt until I emailed a month ago that we were told. We have been waiting for several months to see if our local authority will accept a care proposal from a local company. We have been trying to get something sorted for years and are on our knees.
I am not cross with my sons care manager, she is a lovely lady and we wish her well, just the system. It seems that all her cases have just been allowed to back up which is very worrying for all concerned.
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Hi Jeanne,
Wasnt the assessment suggested when you and Glen were having a tough time a few months back and it was seen as the best option?
From what you are saying that "moment" has now passed and Glen sounds a lot happier and starting to enjoy his new opportunities at the FE unit.Personally if he was my lad I would seriously consider what a spell at a hospital for a mental health assessment would achieve (just my opinion)
Loraine
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Hi Paula,
I very rarely post on here anymore but your post hit a nerve.
I do know exactly how you feel. Nothing I can say will ease how you are feeling at the moment but my thoughts are with you.
Be totally honest with social services and tell them exactly how you feel. We spent years putting on a brave face and never admitting (even to ourselves) how things really were.
Try to be kind to yourself.
love Loraine
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Oh what lovely news and a gorgeous name.
Congratulations and have fun!
love Loraine
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Perhaps its a privacy issue.
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We have just returned from a short break. Turned on the computer and saw we had 300 unread messages. They are all "unable to deliver". My sister rang and has had 2 emails from me advertising viagra!
I am not sure what to do or why and how it happened .
Any help/explanations gratefully recieved.
Thanks (a bit worried about using the flipping thing now)
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Oh I am so sorry to hear about your poor dog.
What a dreadful shock for you. Is it possible to get a second opinion, just to make sure. A different vet may have another opinion and treatment option. Is he insured?
We had a similar situation a couple of years ago. Our little beagle suddenly developed a lump on her leg. We thought it was a nasty insect bite but it was cancer, She had the lump removed and lived on for several more years.
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It is very difficult to know what to do for the best. Your son sounds very similar to my lad and I am still not sure wether restraint is the best option. We have had some horrendous sessions where our son ran through the house screaming and banging his head on walls etc. We sought help from our local CAHMS and even showed a video we had made and were told "oh it must be very difficult for you and we do admire how you cope" We were offered absolutely no help other than a learning disability nurse who was out of her depth so we just got on with it.
Have you trying contacting the challenging behaviour foundation, www.thecbf.org.uk. They are excellent and produce DVDs (free to parents) on a variety of issues including dealing with self harm.
I know how distressing this is for everyone (particularly Glen). Hopefully he will start to feel the effects of the rispiradol in a couple of weeks. Our son was prescribed this last year (0.5mg a day) after a distressing period and this seems to have helped.
Good luck.
ASD and Orlando
in General Discussion
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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!