We have never had any real support or respite. In Lincolnshire where we lived we constantly had assessments but then they tried to do everything to wriggle out of helping..claiming Autism isnt a disability, not having any services to offer, lost paperwork, change in personnel constantly so you couldnt pin them down and then after Hubbies first suicide attempt..he was away critical care and rehab for 4 months and then had no feeling below his waist which meant he couldnt stand or walk and he needed help with bowel care, washing, dressing, turning in bed, skin care and going out....I was told that was my duty as a wife just as it was my duty as a Mother to care for my boys and to get on with it.
So we muddled on caring for ourselves which meant our eldest had to help me and didnt manage much more than a voluntary job.
After he died we couldnt stay in the house where it happened and moved to Southend into Mum & Dads empty home which hadnt sold and have been here for nearly two years now.. We didnt mean to stay this long but the grief and youngest sons behaviour meant we couldnt think or plan and I still am struggling day to day with anxiety and panic attacks. I now find myself virtually alone with my boys. friends and acquaintances have pulled away. Perhaps they think I am a disaster?
Last May I contacted our GPand SS for help. The GP was unhelpful so we changed GP and I paid privately to see a Psychiatrist and a Neurologist to try and get our youngest urgent help. Months later both failed to help. I had an emergency stress induced hospital admission in July and SS refused to help leaving our eldest to cope alone with his brother hitting himself day and night with only an elderly friend staying overnight. The SW eventually turned up 2 days later after I pushed and pushed from my hospital bed...I couldnt move with pain...walked in..asked severely Autistic youngest if he was OK..he said "Yep!" and she left without talking to eldest or our elderly friend. her manager said that was what he asked her to do! Now he says perhaps he didnt realise the full extent of the problem at the time? PMSL So I had to discharge myself against medical advice and at risk of dying to take oral instead of IV antibiotics and sit on the sofa talking them through it.
We had a visit in August from community mental health nurse for LD..he listened for 2 hours and the said all he could do was put him on a waiting list to see an NHS Psycho. We saw one in October who listened for another 2 hours and then said he doubted son was Autistic or LD and he referred him for psychological assessment. All came to a head in January. I was really low by this point..grief combined with isolation and lack of support and son leaping about the house nightlong punching himself in the face till he bled if I didnt hold him [he is extremely strong] and on top of the same all day and no sleep. The psychologist rang to make appt to do the assessment to try and deny his LD or Autism and told him I couldnt go on..posting same on FB. He reacted, FB friends reacted.....police were called in case I was going to top myself and possibly them. result was a WPC then supported me and phoned SS and LD mental health demanding help for me. Two days later we folded. I went to A&E at 8am because we hadnt slep for days and coudltn keep him safe. They were rude and aggressive and tried to throw us out. I called the police to help and after they ascertained that A& E were the problem not me they got me the help.7 hours we sat it out and he was referred to a LD mental health unit. he was there one night and when we visited next day told me a carer had touched him on his thighs and said some stuff so we had to bring him home..with the psychos approval.
After that we had three short spells of emergency respite...3 days FOC and rest we had to pay for at £170 a night. DPS were approved but son has savings his grandad gave him over the years which he has to use to pay first until they run out. Adult Placement support workers came and went...either not happy with the pay or couldnt understand why he mustnt have artificial additives to eat or drink...management refused to tak to me to resolve. The SW started spreading it about to everyone including the day centre he was going to that I was unstable and they started treating me oddly which meant I couldnt talk to them..son picked up on it and started playing up due to the tension this caused and hitting himself more which meant they started saying they couldnt keep him safe either. So now we had no day services.. they refused to stop him if he started hitting himself which to my mind is inhuman. I spoke with the SS manager and he wasnt interested.
I went to our GP...twice in one week...to try and get help and was dismissed..told to find a carers group and then that I was to blame for not giving him medication the psycho had prescribed which even the psycho knew had made him worse. One GP told me it was because he should have it 3 times a day..it was prescribed for once a day which I showed her and the psycho never said to increase it then another told me it was the last medication son should have as it was contraindicated for Autism!!!!
By the way..he had the psychological assessment in February which confirmed he is Autistic and has an LD! It said he needed Speech and Language Therapy to help him express himself verbally but I was then told he wouldnt be getting it...referral wouldnt be accepted. I insisted it was a diagnosed need and was then told he was on a closed waiting list!
My response to the second GP was to say "What do you want me to do? Jump off the pier?"...and walked out. We were at our wits end. Eldest son decided to take us out for our tea and while we sat trying to keep youngest calm..had to go outside several times and calm him..and eat....police helicopters were up looking to see if i was jumping off the pier! We then went to A& E to see if they could help and the police rang me on my mobile and came to offer support and make sure we were safe..the lovely WPC from January came as well. They had to bully the NHS to help and the help was an emergency respite placement at our expense again and some stronger sleeping tablets.
The suddenly we found ourselves being overrun with attention. The psycho told me youngest son would be under a CPA [Care Pathway Approach] and that he would now be getting Speech therapy [I had just made a private appt for it which they werent happy about they said?] and an OT. The problem with this was that it was less about the SLT and more about nosing into our lives and risk assessment. My eldest withdrew as he didnt like it at all. I persevered but wasnt comfortable. meanwhile we were still struggling. When I asked for help in crisis..having to be on call 24/7 and hold youngest to stop him hitting himself up to an hour at a time...they started questioning my mental state as though i was to blame or the focus of their attention rather than them being there to help my son. We had a terrible weekend with him a few weeks back and when I asked them to help on Monday they started talking in that funny voice they have when they query your mental state...eldest son firmly told then that it wasnt Mum with the problem but his younger brother..they told us not to move, that they were coming and were going to take both my sons into respite care. We ran. All day.
We came home at night and within minutes the police were knocking at the door. I called our elderly friend who knows everyone in this area..and he told them we were OK but really didnt want to have to parade ourselves in front of them. They backed off. We feel so vulnerable and threatened and unsupported.
The next morning the SLT and OT turnd up on our doorstep unannounced..they stayed all day and came back the next day. They reassured us we are not under threat. All they offered was a specialist Autism respite home...now £300 a night...a specialist support worker..£30 an hour..and all to come out of sons precious savings which his Grandad gave him for his longer term security. It is an insult that they expect me to cope alone for ever on £58 a week and then pay this money for any help. In the end my eldest said he couldnt cope with their making him feel threatened and we had to ask them to stop. In the middle of it all Mum had an accident and we discovered appalling care in her home which is under safeguarding investigation ...she nearly died...so emotionally stressful on top of all this...and I had to make them not send her back and investigate properly and find her a new home!
So now, here we are, alone, no family, no friends, no SS, no LD. They had a meeting last Monday to discuss us. I asked if we could attend and was told not. They said it was to discuss how they might help us. I contacted them afterwards to ask what they had decided and they refused to say but simultaneously they made a referral for psychiatric treatment for me! I was furious. I spoke extensively to the psycho who made the referral...he grovelled and apologised and tried to shift the blame. How dare they blame me?
What do I do now? There will be loads of rubbish on our medical notes which on top of all the lies and misinformation surrounding hubbies death...crisis team denying I asked them to help when I repeatedly begged them to keep him safe...inquests are a farce..I was told that I couldnt see their reports before the inquest in case they wanted to change their minds????? Then having had to engage a solicitor at great expense the coroner sent them home before I got to speak and I couldnt question them. Everything to do with NHS and SS is crap.
The only good thing is that our youngest son has virtually stopped hitting himself. perhaps the grief has eased? then there is the self help we have had to find in the midst of all of it. Supplements..I paid to see a nutritionist...and Holy Basil which calms wonderfully..him and me in a crisis...weighted blanket [£150] which helps him sleep a bit better though many nights he climbs into my bed so I dont rest properly still. All the input such as it has been from SS and LD has either failed us or actively harmed us. They have done nothing to help...at all.
They whitewash over their failings and then they blame us.I am full of so much anger and grief. What can I do? If I complain then I will be attacked again? I cope and yet I get no credit and all the blame.