1. mental illness for people with learning difficulties

    Posted by senaz23 at Wed May 16, 2012 10:04 pm

    i wonder if anyone has experience this. to cut long story short here are the facts
    my son born with down syndrome and also asd was attending mainstream school. he was doing fine. then in 2009 when he was in his last yr of secondary education he was the victim of a serious bullying incident. as a result of this he became depresseed and developing ptstd. unforunately the local child psychiatrist and her team failed to him prpperly thus allowing the situation to get worse. thankfully after 1 year we got a different doctor from a different pct to look after him and he started a new treatment. he started to improve but the situation was dependent from local professionals putting other therapiesin place. unfortunately this was very inadequate. a lot of time when my son was distress and exhibiting severe behaviour issues we were left on our own as there was no services available to deal with him. we even had to call the police on a few occasions and they werre not amused because it was not their problem. the person was sick not a criminal. social services was useless.my son has now transferred to the adult mental team as he is stilll not fully recovered. i recenty ask the doctor what do they have in place to support my son if he become distress during the night or at week end. she gave me a honest answer. there is nothing available to deal with people with learning difficulties who may also have mental issues. so what does existy for these people? i would like to get others point of views

  2. Re: mental illness for people with learning difficulties

    Posted by swissmiss at Thu May 17, 2012 12:16 am

    I had 9 months with my 20 year old son who has ASD and who hardly speaks punching himself in the face unless I held him day and night, not sleeping and maniacally running round the house all night. This was I think a reaction from his father taking his own life [for whom mental health services were totally awful] although for 6 months our son seemed fine. I had to change GP to get a referral to Psychiatry and paid privately to see a Neurologist while Social Services acted as though it wasnt happening. I gave myself to it totally...for months keeping calm and soothing him as best I could hoping they would come up with answers...which they didnt. I put him on ST Johns Wort , agreed this with the Psychiatrist, and after getting the dosage right it helped a little...for a while.
    After 7months we reached a point where we could no longer keep him safe for one more minute due to total lack of sleep. When I say "we" I mean me and his older brother who has Aspergers himself. So I took us to the hospital at 7am and withstood the negative and dismissive response I got. Two days before this I had posted on FB that I couldnt go on [not surprising] and various friends and the PRTC contacted the police in case I was suicidal. I wasnt but human beings have limits and I was getting closer. The result had been that a lovely WPC came and stuck with us for the following few weeks. I had to call the police to stop the A&E staff throwing us out. Because of the earlier contact they were brilliant. After 7 hours of refusing to budge we were sent to take him to a specialist Psychiatric unit for people with LD because I refused to take him to an adult mental health unit. He ought to have stayed there for two weeks of assessment but unfortunately he was inappropriately touched by a male carer [ongoing investigation] and they didnt wash him despite a clear care plan and administered drugs against the care plans orders!!!!!
    So he came home but three days later I had to press the alarm bells as we were still unable to sleep and had to stop him hurting himself all night, night after night. At 4 am I simultaneously emailed his SW, Her manager, the Psychiatrist and the WPC. By lunchtime we had 5 nights of respite in a local care home....a dump scheduled for closure but with really lovely staff. They took lovely care of him and we took him out for a couple of hours every afternoon but he was as relieved as we were to be honest that we had support at last. he still didnt sleep much but the night staff, who have since been axed so he cant go any more, looked after him.
    The WPC still had to fight on our behalf and we finally got a support package. he had two more weekends in respite and then we were allocated Adult Placement support except that the carer decided she wasnt being paid enough and the service has collapsed. However he goes to a brilliant day service 3 mornings where he does computer work and music and he feels better about himself because someone cares a little.
    I decided in the midst of the chaos to take all additives...colourants, aspartame, caffeine etc out of his diet. I also researched and got some good quality vitamins...B complex, high dosage fish oils and chromium to help balance his blood sugar levels and changed his diet to level his blood sugar levels. I tried something called DMg but it didnt seem to help but I got melatonin spray which helps him sleep [sleeping tablets didnt work] and discovered a magical thing called Holy Basil [an ayurvedic herb] which i took first and it really calms and relaxes in a crisis.
    The I decided to buy a weighted blanket...£150 because he is a big man!! I thought anything to sleep...and it works!!!!
    He still gets worked up so we have to make sure he is stimulated and gets enough water as he is worse if he is dehydrated. So by trial and error it is manageable but no thanks in any way to the NHS and virtually no help from SS.
    Mental health services are crap all round..in my humble opinion. LD or not. Failed my husband and a very dear friend who also took his own life.
    I personally wouldnt leave my sons in a situation where they had been abused. They need to feel safe.
    Sorry, dont know if any of that helps. Just our story and experience.
    Karen xx
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