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Fighting a loosing bettle help pls

mum of 4 boys

Hi I was so relieved when my son was diagnosed with autism and adhd, considering when he was 18months old I asked my health visitor if he was autistic. It has  been a very very long road to diagnosis.

His psychiatrist diagnosed him then refered him to tier 2 cahms, he has recieved no help from anyone but the school since diagnoses. One night he was having a very major meltdown and he was swearing badly at me whilst crying and I think it was tears because he didn't want to be saying these things to me but couldn't control himself. He then started talking about self harm and comiting suicide, I was beside myself with worry and didn't quite know where to turn, I opted to call social care and ask them for help for him, I explained everything to her and whe said.... Oh it sounds awful poor you, anyway its half past 5 and there is nobody in the office I will pass on the message tomorrow. I couldn't believe my ears, she gave me no advice and didn't suggest who to contact. I called the police, the doctors and others I could think of, by that time he had worked himself up into such a frenzy he was exhausted and fell asleep. I spoke to Bucks carers the next day who called social care for me and also his psychiatrist, who informed her that he was refered to tier 2 cams rather than tier 3 because he showed no signs of his autism effecting his mental health. Now I have told her about his suicidal thoughts and his anger and his meltdown and the fact that the following day after a meltdown he suffers with terrible stomache aches and headaches ect. Could you pass on your oppinions as to whether I should be pushing for him to be placed in teir 3 and actually recieve help or was she right to put him in tier 2, and what is the difference between the two. I feel like I am fighting a loosing battle and any and all advice would be very much appreciated xx ty

  • Thank you both for your help, Ihad a look and  have found out we do have a local nas so I am going to contact them on monday, I think keeping the dla seperate its a great idea and one I will take. It is hard to find time for 1-1 with any of my boys, and the others all have their own issues and the youngest two are awaiting an appointment for their own assessments. Life is hard and feels like a constant uphill battle. I am so glad I asked for help here because everyone has been not only helpful but kind and understanding, its has really made a difference to my own mental health just feeling supported not questioned constantly. Thank you to all who have replied. I mentioned my own mental health so I'll explain, I have suffered with depression and anxiety for as long as I can rember and I am currently awaiting an assessment myself as my psychiatrist and I think I have aspergers. xx  

  • I forgot to say my son was on riseridone too, but in the madness of this world, when he turned 18 he had to come of it as it wasn't licensed for adults  for that purpose. that's when he picked up the prozac - Fluoxetine.

    It was my son who asked me to apply for the DLAa. I didn't think we needed it , but it has made such a dfference to him. When things do wrong he doesn't have the guilt of the financial impact to deal with as well as his own feelings. Now we keep it separate I can see just how expensive he is to run!

    One nice thing we use it for is treats to get him out of the house and talking when he is depressed. Its funny what cheers him up - cooked breakfast at morrisons, muffin at M &S . It's hard when you have several children to get time with each of them. I'd suggest you try and get time with just him - the more you can keep communications open the better, but also if you can get 1-1 time with the others - even half an hour here and there it will help them too.

  • Do you have a local autistic society? - mine helped me do the form and we got low level mobility and mid level care. Its work taking the time do do it. If you requested a paper form they backdate any award to the date they sent you the form. I don't think it works that way if you are doing it online.

    We keep the DLA money separate from everything else so it is there to put things right when they go wrong.  I could write a very long list of things that it has pad for. The mobility element goes towards the running costs of his car which he needs to get to college - its like his own little bubble and makes it so much easier for him.

     I've given up with NTs understanding - and to some extent my son has too. We just find ways to make it work for him and s*d everyone else. Unless you walk in our shoes you won't see it how we do.

    I would say yes approach the housing association . My son would not cope with out a room of his own to live in. It gives him calming down space and get away from it all space. Siblings deserve a break too - they have a rough ride and as amum that's really hard to see, when you know you can't do annything about it

  • bananas said:

    Sorry it is so tough so now. My son is 18 diagnosed at 17. We have had the self harm and suicidal thought, but things have got better now.  The things we did were take him to the GP and explain about the suicidal thoughts . They referred us to adult mental health team as he was 18, but once we saw them they said he wasn't bad enough to come under them - but in a positive way - it actually gave him a confidence boost to know he wasn't as bad as he thought. They gave us the emergency phone number and also said A &E will always have a duty psychaitrist too . He has been on the equicvalent of prozac for anxierty for about 6 months, which was working but  they doubled the does when they knew about the depression and this has really helped.

    I understand the playsation thing entirely. Is there any way you could get one just for your son - second hand maybe - I guess you might need a TV too. Do you get DLA - I would consider this a good use of the money as it will help keep him occupied and calm which reduces meltdowns that impact on everyone.

    I hope this have given you some ideas - all I'd say is just keep knocking on doors until you find some help. It's out there , but they won't give it to you unless you tell them in no uncertain terms you need it.

    Keep posting

    Hiya, thanks for your input, I am currently working my way through the form for DLA and am glad you said it would be a good use of the money as this was something we were thinking about doing. Its hard because my friends with neurotypical children do not understand and tell me he his manipulating me and he just wants his own way, which in my oppinion isn't true. Also could I approach the housing association and explain his desperate need for his own space and see if they would consider us for a 4 bed house? xx

  • Sorry it is so tough so now. My son is 18 diagnosed at 17. We have had the self harm and suicidal thought, but things have got better now.  The things we did were take him to the GP and explain about the suicidal thoughts . They referred us to adult mental health team as he was 18, but once we saw them they said he wasn't bad enough to come under them - but in a positive way - it actually gave him a confidence boost to know he wasn't as bad as he thought. They gave us the emergency phone number and also said A &E will always have a duty psychaitrist too . He has been on the equicvalent of prozac for anxierty for about 6 months, which was working but  they doubled the does when they knew about the depression and this has really helped.

    I understand the playsation thing entirely. Is there any way you could get one just for your son - second hand maybe - I guess you might need a TV too. Do you get DLA - I would consider this a good use of the money as it will help keep him occupied and calm which reduces meltdowns that impact on everyone.

    I hope this have given you some ideas - all I'd say is just keep knocking on doors until you find some help. It's out there , but they won't give it to you unless you tell them in no uncertain terms you need it.

    Keep posting

  • crystal12 said:

    hi mum of 4 boys - this sounds awful for you all.   You didn't get any help when you needed it more.  Social services depts have an Emergency Duty Team which is supposed to deal with "out of hours" calls.  I think camhs should at the least be reassessing your son's case.  You can complain to the hospital's PALS service if you don't already know that.  They should investigate your complaint + keep in touch with you. That's the way it's supposed to work.  I hope you don't mind me asking, but could you tell us a bit more about your son then perhaps users of the site could volunteer more suggestions.  Things like his age, type of school he attends, what can really upset him.  bw

    Thank you for your replies, thank you happy days for explaining the difference in the tiers, it seems tier 3 should be where we should be.

    Hi christal12 I didn't know about any out of hrs service, though I assumed there should hve been one. My son is 14, his biggest issues just now are angry ourbursts which are verbaly abusive and have a few times been physicaly abusive toward either my or his dad, these meltdown end in his refusing to go to school the next day and believe me he means it to. He also threatens self harm or suicide because he says he is the one with autism therefore if he wasn't here problem solved. He has a major sleep issue it can take him till 2-3 in the morning to get to sleep and then he is tired next day and often refuses to get up for school and if he does go he is very late. He has an almost complete intollerence of his siblings, he can't stand being around them and won't tollerate them trying to communicate with him, this is a major issue being as I only have a 3 bed house so he has to share with this closest brother who is 12.

    He doesn't socialise or relate to peers at school, he won't go out and socialise he spends all his time in his room. How do I explain his relationship with his pplaystation, to everyone else a playstation is just a games consol, and a time limit should be placed on children's use of it, to my sn the playstation is his way of communication with others, as he goes on games where he can use an ear piece and speak to other players, he has made some friends on there and I think he finds it easier to communicate over the playstation because he has no face to face contact, nor any body language to deal with. The issue here is that he has to share it with his brother so every other day we have very very difficult issues to deal with, anger, meltdowns fights he picks with his siblings. My interpretation is that take away his playststion and you take away his ability to communicate and spend time with others. I hope I am making sense here. He has problems with me specifically and accuses me as being in the wrong for having more children after him, he thinks he should be an only child and asks me what was I thinking having more children. He has 3 younger brothers, 12 yrs 7 yrs and 6 yrs. There are other less major issues which cause anger or outbursts and sometimes we never do find out what caused it. His school put in place all the recommendations made by his psychiatrist and he has great support there, but we need support at home too, and he needs help with these issues which cause him so much distress. I want to get help with reintergrating him (if possible) into the family and encourage him to spend more time with us, but I don't think that would be possible from this angry n stressed state, am I right in thinking that we need to get help for the other issues first. Thanks for reading n helping any more help n advice welcome and needed xx

  • hi mum of 4 boys,

                              you are certainly not alone in your frustration about the help that your child is recieving for the problems hes having at the moment. its absolutley terrifying to think that your child may seriously harm themself, i think it disgracefull that no one  could point you in the right direction of someone who could help you when you and your son  needed it. it seems unfortunatley that a lot of these services which are set up to help have become quite indifferent and lost all ability to empathise.

    CAMHS has a 4 tier system:

    Tier 1: consists of non specialist primary care workers such as school nurses and health visitors working with, for instance, common problems of childhood such as sleeping difficulties or feeding problems.

    Tier 2: consists of specialised Primary Mental Health Workers offering support to other professionals around child development; assessment and treatment in problems in primary care, such as family work, bereavement, parenting groups etc. This also includes Substance Misuse & Counselling Services.

    Tier 3: consist of specialist multi disciplinary teams such as Child & Adolescent Mental Health Teams based in a local clinic. Problems dealt with here would be problems too complicated to be dealt with at tier 2 e.g. assessment of development problems, autism, hyperactivity, depression, early onset psychosis.

    Tier 4: consists of specialised day and inpatient units, where patients with more severe mental health problems can be assessed and treated.

    I would say that you should be pushing for Tier 3

    I hope this helps

  • hi mum of 4 boys - this sounds awful for you all.   You didn't get any help when you needed it more.  Social services depts have an Emergency Duty Team which is supposed to deal with "out of hours" calls.  I think camhs should at the least be reassessing your son's case.  You can complain to the hospital's PALS service if you don't already know that.  They should investigate your complaint + keep in touch with you. That's the way it's supposed to work.  I hope you don't mind me asking, but could you tell us a bit more about your son then perhaps users of the site could volunteer more suggestions.  Things like his age, type of school he attends, what can really upset him.  bw