Going to the doctors to ask for help

[Mandapanda]

Hi

 

We are off to the doctors this morning to let them know how things are with our youngest. Don't know that they can do much, it would depend on him wanting to get help. He won't see anybody, even family or friends, and rarely goes out. Before when we went to CAMHS they wouldn't come out to see him, even though the School Nurse and Advocacy asked them to.

 

His sleeping is very erratic and doesn't stay in a routine for long. His eating is very rigid and limited, although he knows he should eat heathily and wants to try. He won't shower or wash his hair, but washes his hands obsessively at times. He doesn't even get dressed during the day (when he's awake!). He knows he should exercise but doesn't even want to go for walks, he worries about getting hot and insects. He paces up and down in his room to get some exercise and goes up and down the stairs a lot. He no longer watches TV with us, he'll watch stuff on his computer, or that we've recorded when we're out. He won't eat in the same room as us.

 

He's not suicidal these days, and is much more reasonable about noise most of the time.

 

I'm probably going to have to work 10 miles away soon, so won't be able to pop back at lunchtime to feed him. He won't make his own food so will just eat crisps, biscuits etc if I'm not there. He worries about germs a lot.

[lindy2017]

Hi

 

We are off to the doctors this morning to let them know how things are with our youngest. Don't know that they can do much, it would depend on him wanting to get help. He won't see anybody, even family or friends, and rarely goes out. Before when we went to CAMHS they wouldn't come out to see him, even though the School Nurse and Advocacy asked them to.

 

His sleeping is very erratic and doesn't stay in a routine for long. His eating is very rigid and limited, although he knows he should eat heathily and wants to try. He won't shower or wash his hair, but washes his hands obsessively at times. He doesn't even get dressed during the day (when he's awake!). He knows he should exercise but doesn't even want to go for walks, he worries about getting hot and insects. He paces up and down in his room to get some exercise and goes up and down the stairs a lot. He no longer watches TV with us, he'll watch stuff on his computer, or that we've recorded when we're out. He won't eat in the same room as us.

 

He's not suicidal these days, and is much more reasonable about noise most of the time.

 

I'm probably going to have to work 10 miles away soon, so won't be able to pop back at lunchtime to feed him. He won't make his own food so will just eat crisps, biscuits etc if I'm not there. He worries about germs a lot.

Hi, I dontknow how old your son is butmy 12 year old is similiar just dx with aspergers month ago he loves his pc doesnt go to mainstrealm full time only 5 hoiurs in nurture unit with his tutor....germs noises lights traffic when he does go out food issues etc....i can understand how you feel..lindy

[Sally44]

My son is also the same.

He was in school until 10 months ago, but anxiety was causing physical symptoms of vomitting, nervous cough.

 

He now struggles to swallow his own spit because he thinks it is full of germs he has "sniffed" into his nose. He handwashes to the extent he now has an allergic reaction to soap - or the GP says it maybe due to stress.

 

He doesn't like to go out. If we get him out he wants to be somewhere away from other people. Does not want people looking at him. He often stims when watching TV and does not want us to watch him doing that.

 

He gets no exercise, other than me getting him out the house twice a week for a walk.

 

ClinPsych and CAHMS are involved, but they are just talking to me rather than seeing him.

 

He only manages one or two hours a week in school. He is with a teacher in the store room and he refuses to go into the playground.

 

At home he is often afraid to sleep on his own. This had initially improved, but since the LA have arranged for his 2 one hour school sessions to be in his former school, this has returned to needing to sleep with his dad and I am having to sleep in his bunk bed, or on the settee.

 

Like you I am tied to the house 24/7.

 

Some days you just cope. But others I wonder how we are going to continue like this indefinately.

 

My son was also threatening self harm and suicide. Thankfully that seems to have stopped.

 

What would I advise .... this is what I am thinking of doing with my son.

 

We are using social stories for his worries about being infected with germs. We will continue with that, and I may try to find some video content on line to explain how our bodies fight infection. At the moment he is worred about contamination, but now also worried about being allergic to washing his hands!

 

I am waiting to hear from our recent Educational Tribunal if we got the placement we asked for. That placement does have ClinPsych and CAHMS that go into the school every week. And they work with the teachers to deliver a programme and adapt things to help the children with their fears and obsessions.

 

I am also going to ask ClinPsych about medication. I think that he needs to get proper sleep, and his fears need to be reduced with medication if we are even going to get him back into school. I would hope that that would be for months and that we could then begin to reduce that medication.

 

If we don't get the placement, then I am going to ask the same thing about medication, but I will also ask them to do some actual work with him. If they cannot come to your house, then he may need medication to reduce his anxiety so that he can get out the house to see them - or there maybe some argument you can use that they are not meeting his needs if they are insisting that he goes to them, when he is medically so unwell that he cannot achieve that.

 

An OT programme would help, because sensory integration therapy helps the child achieve a calm and relaxed state which they have to be in to even access learning. But I know it is impossible to get that unless you get a special indepdendent placement that provides that as standard [are you able to go to tribunal for such a placement, it seems obvious that he is not coping at all where he is currently supposed to be].

 

My son has recently [yesterday] talked about a place we visited some years ago [Crich tramway museum], and he has said he wants to go again. This is the first time he has ever asked to go anywhere, so we are going this Friday. So if your son has any interests or obsessions that you could use to get him out the house [but try to make it a place or situation with not many people around]. That might motivate him?

 

You need to make it very clear how this is affecting you and other family members. It could cause you to become ill and could and does break up families. We've been close a number of times. You could ask for a referal to SS for support. I am still working on that myself. They are supposed to support families and carers, but they don't. They may assess you regarding child protection issues and once they establish that your son is okay, they may try to leave you with it to cope. That is not right. But you may even need to involve an organisation or even a solicitor to try to force SS to get involved. You could do with some respite, and someone to spend some time with your son so that you can get out the house.

 

Like you, I have times when I have to leave my son alone. But I could be charged with child neglect if he hurt himself during those times.

 

Write down everything he is struggling with, and how that is affecting your family and leave it with the GP when you visit. Don't try to stop yourself crying. Don't be brave.

 

You may need to seek an alternative placement, with his anxiety and difficulties accessing his current school and a need for specific therapies that he would only get in such a special school environment being your argument.

Edited October 25, 2011 by Sally44

[Sally44]

Just wanted to add that my son was not washing himself, or changing his clothes. He was going days in the same clothes, sleeping in them too.

 

But this has improved somewhat. He isn't sleeping in his clothes, but I have to remind him to get undressed. He is having a bath once a week but I have to apply alot of pressure and threats to get him in water.

 

Your son may have full blown depression now, as well as an Anxiety Disorder [if those have not already been diagnosed].

 

Let us know how you get on.

[Mandapanda]

Hi

 

Thanks for your thoughts Lindy and Sally.

 

My son is 15. We have been through CAMHS before but didn't really get the help he needed. They did help me understand him better which was very useful.

 

He wouldn't take medication, it's hard enough for him to eat and drink anything new/different. He had really bad hayfever at one time and did take Piriton liquid for a while. Then they gave him a different one and he wouldn't take that and then wouldn't take the Piriton either When we saw a Consultant my son said he would take tiny tablets - as soon as we came out of the room he said there was no way he was taking them. He doesn't like to admit that he's 'scared' of taking/doing things, but that's basically what it is - it's anxiety. I think he does need medication to get him started on the road to recovery but don't think that's likely to happen in the near future. I'm on antidepressants myself, and wish I could have had them when I was a teenager.

 

We had a long chat with the doctor. She listened carefully. She said she couldn't guarantee that CAMHS would be more responsive this time, but I know that many of the staff have changed there since we last went, and friends have had a better time there with their young people. Also they would be focussing on helping him cope with life rather than anything to do with school due to his age (the Home Education Inspector pointed that out, we hadn't thought of it). There is absolutely no question of him ever going back to school.

 

I felt much stronger and more able to explain properly what is going on and why, and my husband came with me and agreed and backed me up etc.

 

We do think he is still depressed although not as overtly as before. We have recently met a young man who has overcome similar difficulties, and when he was at his lowest he didn't want people watching him eat and didn't want to be with people etc - so maybe that isn't a fixed feature of my son's problems but a symptom of depression - I do hope so (IYSWIM!).

 

The problem with going out is that he has to want to go enough to overcome his anxieties. Most things we suggest he says he's 'not interested in that sort of thing anymore' - convenient We occasionally get him to the cinema (why did Harry Potter have to finish ). He has said he's worried about being bored, but again I think that's his clever brain coming up with a 'reasonable' excuse for not doing things. We went to the Science Museum (and had to stand all the way on the crowded train) - a huge effort for him, and it was a complete let down to all of us, which only confirms to him that it's not worth the effort.

 

Sally it's sad that your son is having these problems, but you are amazing at working out the procedures and fighting for what he needs. It's just a huge shame that what is 'supposed to happen' in schools often doesn't, and it's also a shame that every single person has to go through that fight. No one is able to blaze a trail, or open doors for people that follow them. The schools treat everybody completely separately and differently, mainly as a way of controlling their budgets, I believe. If parents could group together and confront a school it would have much more impact.

[Kathryn]

Hope you get some proper help from Camhs this time, Mandapanda.

 

We do think he is still depressed although not as overtly as before. We have recently met a young man who has overcome similar difficulties, and when he was at his lowest he didn't want people watching him eat and didn't want to be with people etc - so maybe that isn't a fixed feature of my son's problems but a symptom of depression - I do hope so (IYSWIM!).

 

Your situation reminds me so much of my daughter at a similar age, Mandapanda. She barely left her room, let alone the house, for two years, and like your son, she would only do something she really wanted to do, otherwise the anxiety was too great. In her case, it was anything to do with Star Wars! She wouldn't eat with us and although there is a nice field right outside our house, I couldn't even get her to go for a walk as she couldn't cope with the noise of barking dogs. Germs were also an issue, so she couldn't eat in restaurants or use anyone else's toilet but our own. She had various other obsessive rituals as well. That severely restricted our outings. For the sake of our younger son, we had to try and do normal things, but there was no question of going on holiday with her, so we left her at her grandparents' while we went on the occasional short holiday - the only other place she felt secure. She was highly anxious most of the time.

 

I think a lot of this was due to depression and at the time we thought it would go on forever, but it didn't. She eventually recovered more and more to start seeing friends again, cope with the demands of college, and now she is at university, as I've posted elsewhere. It was amazing to see how the OCD symptoms disappeared as she got better in other ways. So hang in there, and it's important you look after yourself as well, because, quite frankly, the whole situation can just drag you down. A job helped me and I hope it helps you too. It's just refreshing to be known as yourself, not as mum of X and talk to other people besides health professionals! Regarding lunch, would he eat a sandwich and fruit if you left it for him? Or is there someone local who can pop in and make sure he's OK?

 

K x

[Mandapanda]

Hi Kathryn

 

Regarding lunch, would he eat a sandwich and fruit if you left it for him? Or is there someone local who can pop in and make sure he's OK?

 

If only. He will only eat freshly prepared food - he has Weetabix with butter on for breakfast which would keep perfectly well wrapped in foil in the fridge, but he refuses to try it. I think he worries about food going off - he's obsessed with sell-by dates etc. He doesn't eat bread or fruit. He has cheese on crackers for lunch.

 

Our neighbours would keep an eye from a distance, but he wouldn't see them - he would probably blockade his door if he knew someone else was coming in.

 

We haven't been on holiday for about 4 years. My in-laws who he was close to have passed away, but he would never even go and stay with them anyway. My husband and I have managed a night away on a couple of occasions (fairly local), leaving big brother in charge, which has been good for us.

[Sally44]

Unfortunate that you all made the effort to go out and it was not worth it!

We went somewhere similar [might even have been the same] and it was as boring as watching paint dry.

Had a similar experience at Cadburys. I expected to see how chocolates were made etc, instead all they did was give you lots of free products. The best thing was some of the entertainers in the play area!

 

We've had fun this evening with my son. He wanted to go to the loo, but the downstairs toilet seat has come off [and not been replaced yet], so there is no way he will sit on the actual toilet because of worries about germs. The lightbulb has gone out in the main bathroom and so he won't go in there because it is too dark. And the only other toilet is in the loft conversation ensuite, and he won't go to that one because he is too scared. But when finally faced with those options or wee himself, he decided to go downstairs after I had cleaned the toilet basin.

 

A number of years ago I started giving my son liquid fish oil or vitamins. Then I graduated onto the tiny pills, which he was able to swallow. So I am VERY fortunate in being able to get medication down him in tablet form. Infact it is easier than liquid medication which often made him vomit. I don't know if your son would tolerate some kind of liquid vitamin or chewy vitamin, and then try to graduate up to some kind of tablet form. Maybe you could sell the idea to him by saying that it gives your body all the vitamins it needs to stay healthy and fight germs??

 

I really don't understand why CAHMS cannot come out to you. The Psychiatrist came and did a home visit to us. She managed to get him out of the house and go for a walk with her. She used a certain technique [cannot remember what she called it - something like intensive interaction, but not that - where she took all the responsibility for decision making, but in a way that actually made him take the decisions. Rather like treating my son like a tour guide and saying "I really want to go to xxxx, but I don't know the way". And so my son would say "I know where it is." And she would say "Can you take me there", and he did. She made it look so easy. But obviously she has years of doing this. What she said was that because he was 'helping her' it took the decision making and anxiety off him doing it for himself. But obviously she isn't able to live with us! But what she did say was that an adult using those types of techniques would enable my son to do things without the emotional stress and anxiety because they would take that responsibility from him. And then would gradually get him to take the responsibility for those things back for himself.

 

Have you spoken to anyone at MIND? I find it very surprising that the very people that actually need the professionals are denied access to them because they are too ill to be able to go walk into the CAHMS building to meet the psychiatrist in the comfort of their office! I'm sure there must be a way around this and I would get clued up about it before any meeting with them.

[Sally44]

I don't know if the National Council for Independent Living might be able to give you some advice. They did tell me that SS were acting illegally by refusing to assess myself as a carer and refusing to access my son. They told me who I should write to and what I should say - unfortunately I have to get back to them and tell them that it did not work and see what the next step would be.

 

You maybe entitled to direct payments to find someone who you could gradually introduce to your son as someone who could both come into the home whilst you go out, or could work with him on doing some of the things he would like to do. I know you are saying at this stage that he is not capable of going out, or of meeting anyone new. But by the time this was set up things might be different and he might be so bored that he would be prepared to try something - even if it was another person playing on the computer with him.

 

http://www.ncil.org.uk/ This is the link to their website.

 

I just wanted to add that, as you've said, this is about preparing him for adult life. There are so many things he will need to learn to do eg. shopping for food/clothes etc. Unless he is going to be a hermit with services bringing everything to the door for him [probably the option he would go for!]. And due to his age, I think that SS need to be aware that he is there and needs some support from them.

 

I also wonder to what extent his grandparents deaths have affected him? And I wonder if any of his fears have sprung from their illnesses and subsequent death and what the future holds for him?

Edited October 25, 2011 by Sally44

[Mandapanda]

Thank you Sally, you always give very constructive suggestions.

 

My friend's husband is coming to sort out our internet soon. We have wanted Aw to meet him - he also originally wanted to be an Astrophysicist and is a different sort of scientist now. I am hoping that because it will benefit Aw that he will meet and interact with him in order to get his internet connection sorted.

 

Thank you for the link to ncil - I hadn't heard of them. We went to the GP because I didn't think it was right to just carry on in our little house with no-one else knowing what is going on. We were referred to SS before but they said they couldn't offer anything...

 

We actually had 4 bereavements in 5 years - the first being my sister (leaving Aw's cousins without their mum, which played on his mind as he already had separation anxiety with me), and this all had a huge impact on him. He was having a home tutor when my mother-in-law passed away (the closest adult to him after me and his dad) and he couldn't face it at all after that. People said "life has to carry on, you still go to work so he should still do his lessons" but it simply was not possible.

 

I don't know how we can claim any benefits when we have no professionals to back us up. Our family doctor is very dismissive - we saw a different doctor this week.

 

I do picture him in a tiny flat, living on his own, internet shopping (or getting me to bring shopping ) However we have seen and heard success stories of young people overcoming similar problems

[lindy2017]

Just wanted to add that my son was not washing himself, or changing his clothes. He was going days in the same clothes, sleeping in them too.

 

But this has improved somewhat. He isn't sleeping in his clothes, but I have to remind him to get undressed. He is having a bath once a week but I have to apply alot of pressure and threats to get him in water.

 

Your son may have full blown depression now, as well as an Anxiety Disorder [if those have not already been diagnosed].

 

Let us know how you get on.

Hi, My 12 year old son is the same about his clothes and sleeping have to remind him alot to change them and have to wash his hair when i do get him in the bath after alot of talking.....lindy

[Sally44]

I think you are in the situation you are because all the agencies that are supposed to help are just doing their best to get out of being involved.

 

I know that I haven't go anywhere with Social Services yet, but that will be my next project and will post on how that goes!

 

I have an older sister and she did have SS input for some time when she initially moved out of the family house, so it maybe that from that point of view, you get them involved when he wants to do that. BUT they should be doing something now.

 

Everyone is entitled to Direct Payments, speak to the NCIL and see what they advice you to do. If you follow the procedure, and still don't get any response, then you may need to consider involving someone such as an advocate to get SS on board. I have used an organisation called Network81.org before. They are a charity and will go with you to meetings, and help prepare paperwork etc. So they do support you individually. But their service is not for free. They do charge, but alot less than a solicitor.

 

What did the GP say? Have you asked for a referal to Clinical Psychology? They could refer onto CAHMS if needed.

 

You would want them to do some work with him on his anxiety and probably also about death and grieving. You may need to initially go to these meetings on your own. But ask them to do home visits. You can also visit PALS at your local hospital and ask them what to do IF home visits are refused again.

 

I know alot of this involves writing letters etc. So you'll have a good use for the computer when it comes. Set up a file and keep copies of everything.

 

I know you mentioned about your son doing a paper round. But how you've explained things, that seems way too far in the distance. I dont' think he would cope with the anxiety regardless of it being early in the morning with no-one about. He would still have to go into the shop. He might still have issues with meeting people at the door. If he were capable of doing it, he would have done it by now.

 

Maybe start with him doing some small jobs around the house for payment. My son does things like emptying the dishwasher for 50p a go.

 

Lots of praise for good stuff. Maybe he could start off a scrap book of things he likes to do and which make him feel good [could be photos of the past, pictures, things he would like to see or do]. That might help you and him focus on some goal and that he would want to achieve.

 

Try to give his day as much structure as you can. Too much time on his hands doing nothing in particular is just time that he can be thinking and worrying about stuff. Things like asking him to read a page of a book and then come and tell you what has happened [can't remember if he can read?], that would help his learning and also his social communication etc. I apologise if i'm telling you stuff you probably already know and do.

[Chantilly Lace]

Hi Mandapanda,

 

I am on the forum for my elder son with AS, but the description of your son is very similar to my younger son. He was bullied at school and I was so relieved when he left as I thought he might cope better with the world outside. He got a few GCSEs and then did a year's music course at college as he loved playing guitar. He applied for many jobs afterwards but was unable to get one. He spent a year in his room playing computer games and watching TV. He didn't get into pyjamas but slept in his clothes and only took showers when we pestered him to.

 

Apart from one friend he saw very occasionally, he had no other friends. He hated summer because it meant flies and other insects would be buzzing around, so he wouldn't even go into the garden. I managed to get him on a painting & decorating course (I had insisted that he went on a college course taster day and he chose that course). He goes 3 days a week and the other days he is back in his bedroom.

 

I had a heart to heart with him a few months ago and he told me he had panic attacks when he was walking around the town. I took him to the doctor who referred him to a psychologist. He was diagnosed with severe anxiety and depression and he is now on a cognitive therapy course which he says is helping him. Maybe to all those who have a son/daughter who stays in their room all the time, this could be the reason? Its worth a thought..

 

Sandra

[Mandapanda]

Hi all

 

Thanks for your replies.

 

We have received an appointment, but of course it is for us to go there, even though we told the doctor we rarely can get him to leave the house. They sent questionairres for us and him to complete, I'm not sure he'll even do that.

 

I feel sick, I don't know how to broach the subject with him. We want him to have help for his future but don't know if he is 'ready' for it yet.

[caci]

I don't know your son's background, but if you have only recently taken him out of school, maybe he needs longer to de-school, before he can face the world ?

 

Most Home Ed groups talk about needing about a month of de-schooling, for each year a child was at school, and much longer for kids with any type of SEN, or who had problems at school.

 

On that basis, a child who was at school until their early teens would need at least a year.

 

With our son, he was 12 when I de-registered him. He has SEN and had huge problems with school, so I am assuming he will need 2 - 3 years of being at home before he can begin to cope with the world again.

[Kathryn]

It's good that you have an appointment, at least, and can get back into the system even if you have to go on ypur own. Maybe this time they might come to you? In our area there was an outreach team and I don't know what I would have done without them as my daughter would not have left the house to see anyone either.

 

K x

[lindy2017]

Hi Mandapanda,

 

I am on the forum for my elder son with AS, but the description of your son is very similar to my younger son. He was bullied at school and I was so relieved when he left as I thought he might cope better with the world outside. He got a few GCSEs and then did a year's music course at college as he loved playing guitar. He applied for many jobs afterwards but was unable to get one. He spent a year in his room playing computer games and watching TV. He didn't get into pyjamas but slept in his clothes and only took showers when we pestered him to.

 

Apart from one friend he saw very occasionally, he had no other friends. He hated summer because it meant flies and other insects would be buzzing around, so he wouldn't even go into the garden. I managed to get him on a painting & decorating course (I had insisted that he went on a college course taster day and he chose that course). He goes 3 days a week and the other days he is back in his bedroom.

 

I had a heart to heart with him a few months ago and he told me he had panic attacks when he was walking around the town. I took him to the doctor who referred him to a psychologist. He was diagnosed with severe anxiety and depression and he is now on a cognitive therapy course which he says is helping him. Maybe to all those who have a son/daughter who stays in their room all the time, this could be the reason? Its worth a thought..

 

Sandra

Hi, My son stays in his room loved his pc chats to people and plays interective games helps people with IT problems sometimes sleeps in his clothes have to talk him into getting bath or shower.....says the water is sore on his skin he has soem eczema...has anxieties about going out has to be on his terms school is a no no fpr him has home tutor ....he doesnt have any friends ....sees his cousins when thye have a famiy party but gets anxious about that .......has meltdowns ....lindy

[Mandapanda]

I wonder how many people are in this situation in this country? It's very sad, and obviously a hidden problem.

[Mandapanda]

Hi all

 

We have an appointment with CAMHS next week but they won't come to the house. She said they don't offer therapy for young people at home. I said what would you do if someone had agoraphobia and she said 'if they wanted help they'd come to the clinic'. I know other people who have had home visits from the same CAMHS Team so don't know what to do. It's so frustrating.

[Sally44]

Sometimes if you ask them to put what they are saying in a letter to you, they back down.

 

It seems ridiculous. Have you spoken to PALS at your local hospital? They are kind of the Parent Partnership equivalent in the NHS. They helped me understand and challenge some decisions the Trust were making about my son. They might be able to help you challenge this decision.

[Mandapanda]

We went to CAMHS and actually the lady was really nice and seemed to be taking it all much more seriously. We were better prepared this time as I had typed out everything about his eating, going out, washing (or not ) etc. She's coming out to our house next week and has talked about getting the Intensive Therapy Team involved to possibly do CBT. Sounds promising.

 

He actually completed the questionnaire they'd sent which we didn't expect, and had admitted to having anxieties and fears, so that was great to give to her. I had told him the doctor wanted it completed as he hadn't seen anyone for ages.

 

I've told him today that as a follow-up to the questionnaire he did the doctor has asked a nurse to come to our house next week and ask him a few questions. I've left it at that as don't want to make a big deal of it. I suspect in a few days he'll ask me when the person is coming. Here's hoping

[Sally44]

I'm glad they're coming.

Hope they do CBT, or some kind of counselling.

 

You can also ask for some family therapy so that you all know how to help with anxieties etc. I'm waiting for ClinPsych to arrange this for me and son. CAHMS said we needed to be taught some techniques because I felt that presently we were just keeping the lid on his anxieties and although we might contain one aspect, it simply caused another symptom to appear - so nothing was really resolved.

 

Ask for CAHMS and Therapy Team to put their advice in writing to you. This might be useful in other situations whether educational, or seeking support, or DLA etc.

[Mandapanda]

Well she came. Aw had gone to bed and was asleep so I'd tried to wake him before she came. She came up to his room and I tried to get him up but he just pulled the quilt over him and crossly shouted 'I don't want to, that's final' and kept telling me to leave him alone. In the evening when he came down he didn't even mention it, so I'm not sure if he was properly awake and even remembers it. I'll try and talk to him this morning.

 

I feel really sick and ill. She talked about hospital admission although said they 'probably' wouldn't do it forcefully. I believe he would want to kill himself and would never trust me again if he got taken to hospital. I don't know how they would keep him there or keep him safe.

 

They are much more bothered about his OCD symptoms that I expected, although when I wrote it all down I could see much more of a pattern that I was aware of. I'm really scared things will go out of my control and it could make things much worse.

 

Mj came down and talked to her about Aw (although he was very defensive when I first mentioned it - think he thought I was trying to get 'help' for him too!).

 

My husband is getting time off to come when the Psychiatrist comes next week as I know I'm not strong enough to cope with it all.

[Mandapanda]

Psych came and is really taking things seriously. Writing it down and talking it through has made us acknowledge just how bad things are. Hospital is a last resort but I think we're prepared for it if it comes to that. He didn't see the Psych even though I begged him in tears. After she went he stayed up till 8.30pm, tried some cod, and got his own cake - I'm hoping he'll start doing stuff now to avoid hospital.

[Mandapanda]

When we explained to Mj about what had happened and what the plan for Aw is, he said "I don't want him to get too much help, I want him to do it because he wants to" - ah bless!!

[Sally44]

If he were to be admitted have they told you where, is it ASD specific or has expertise in that area?

 

What would they DO there eg. medication, CBT other therapies available?

 

Find out what his, and your rights as parents are to accept/refuse whatever is offered.

 

Could he be sectioned?? Again does that require your consent etc.

 

Could he attend as a day patient?

[Sally44]

Also talk to them about your fears eg. your son not trusting you again. That you are afraid he might harm himself. If he was admitted how would they keep him safe and in the building.

[Mandapanda]

At the moment we don't know any details about what hospital or treatment. She said it's not a crisis situation as it's been going on for a while, so they won't be admitting him 'tomorrow'. She said they would be the baddies and would make it clear that they were the ones making him go to hospital. She said they have dealt with other children like him.

[Sally44]

I think it is also worth talking about the fact that as he has an ASD he does have problems with social behaviour.

 

So whereas another child might agree to come downstairs because someone had come to the house, a child with an ASD might just refuse - and not necessarily because they are more depressed than the other child.

 

I just wanted to add that because I have had professionals pick up on my son's behaviour as to whether it was due to depression, OCD etc and actually it is "normal" behaviour from an ASD perspective. Does that make sense?

 

And sometimes their behaviour is due to anxiety rather than depression, but the behaviour can be similar. And anxiety is supposed to be the main emotion experienced by those on the spectrum.

 

You know what is different about your child or how he has deteriorated and what is normal for him.

Edited January 9, 2012 by Sally44

[Mandapanda]

Someone from the Intensive Therapy Team is coming tomorrow. We've talked to Aw about it but he says he 'will get better' and will 'flatly refuse to speak to them'.

[Mandapanda]

OK the guy came and Aw pretended to ignore him but didn't shout or slam doors. He came again today and again Aw pretended to ignore him (after taking his headphones off!). We thought great!

 

However after the guy went Aw came down and kicked off about him going up to his room and said he doesn't want to talk to anyone and doesn't want him to come again. He accused us of insulting him and saying he's "too pathetic" to sort himself out. He went up to his room and kept stamping on the floor, so dad went up and talked to him. He's quiet now but I can see things are going to get much worse before they get better.

 

The i2i guy said he would probably need a hospital admission even if he started to engage, as his difficulties are so entrenched.

[Sally44]

Is he on any medication for his anxiety or depression?

 

For our son, the Clinical Psychologist will not even work with him UNTIL his anxiety is reduced because she says he will not engage in that stressful state. Plus he is fearful of germs and contamination and that involves other people coming into contact with him. I think my own son would have a problem with a stranger going into his room ie. what has he touched, was he clean, has he put germs all over my room??

 

My son is now on a mild sedative, and has just started on Prozac for the OCD fears etc.

 

If your son wants to get better himself, can he talk to you about HOW he is going to achieve that?

 

And a couple of visits from this person is not alot. There are children who need to be introduced to someone over weeks before they will start to interact with them.

 

Does this service have any ASD experience?

[Mandapanda]

Aw won't take any medication. He has major taste and texture issues. It's hard enough to get him to eat food. He only drinks water so we can't hide anything either.

 

He is so entrenched he believes he can get better himself but has no idea how to and really is just protecting himself from anything he doesn't want to do or is unable to do.

 

They are putting the referral forward to admit him as soon as possible. Whilst it's frightening, we feel it is the only thing to do as he will not change his behaviour in the home environment. We can't go on like this and he won't allow us to try over weeks, he is so adamant and angry about it.