Jump to content
Sign in to follow this  
misswissy

Family in crisis! Will anyone listen to me?

Recommended Posts

Hello Everyone,

 

Just found this forum tonight and out of desperation thought I'd post. Hope I don't ramble too much. I have a 16 year old son, who in my unprofessional opinion either has aspergers or maybe just asperger traits. When he was little he would never respond to 'the look' I would try to give him across a room if he wasn't behaving appropriately. He hit the terrible twos and has literally never grown out of them. He has involuntary body movements that presented as eye squinting in primary school and upper body and neck/throat movements since he hit adolescence. He is extremely intelligent academically but will leave school next May without a single qualification to his name. He is very clumsy and his speech can sometimes be slightly difficult to understand as he seems to mumble and slur his words. He finds it difficult to read between the lines of people's conversations, and has very low attention span. All of these things are relatively easy to deal with but our biggest issue is his aggression. He has single handedly brought our family to its knees. The smallest of things sends him into a rage that we just cannot deal with. He has been physicaly violent towards me and his brother and sister and the verbal abuse I take is just too much. He has been a total nightmare at school, with exclusion after exclusion, and I'm just at the end of the road. In year 8 I explained my concerns to the school hoping for a camhs referral. They did two observations on him at which he performed perfectly and they wrote and said they were not pursuing it further. His violence escalated in year 9 and I again asked the school for a camhs referral and also a vibes referral (anger management) both of which were refused. So I went to my GP and told him all of my concerns. He said that because my son maintained good eye contact (which actually isn't strictly true) and that he could engage in a conversation then it was unlikely he had anything on the ASD spectrum, so no referral to camhs or vibes. In year 10 he verbally abused a teacher, punched holes in my walls and went awol overnight. The school then agreed he needed anger management and I got my vibes referral. His agression and violence have just got worse and worse to the point where I am considering kicking him out, but how can I when I am his mum, he has nowhere to go and he's still at school! I went back to my GP last week and still they will not refer him for camhs assessment. Instead they have updated my records to say that I am struggling to cope and may need some support. My son looked at the GP and spoke normally so yet again I was told there was nothing wrong. Throughout, my son has been very depressed and unhappy. I hear him crying in his room in the early hours. He's so unhappy and I imagine part of that is to do with not understanding how he has pushed everyone away from him. What do I have to do to get someone to listen to me? By the way my other two children are extremely well behaved, very motivated in school and have visions of what they want to do when they grow up. But we are all at breaking point. We just can't go on the way things are. Any help or advice would be appreciated. Just realised how long this post is. Sorry!

Share this post


Link to post
Share on other sites

Sending you some of these >:D<<'> >:D<<'>

 

My son is a lot younger so I can't advise but I know someone in the know will come along soon.

 

Youve come to the right place.

 

xxx

Share this post


Link to post
Share on other sites

Hi misswissy,

 

Welcome to the forum and you have my sympathy and I'm sure the sympathy of many parents of teens here. It's tough to get support for adolescents who do not have a label and a long official history of problems and I speak from experience as the parent of a teen who got a diagnosis of AS at 15.

 

VWhat does your son say he wants to do? You say that he will leave school without any qualifications - that seems pretty bleak. What are the school doing with him at the moment, i.e. how are they supporting him? Presumably he's in his GCSE year? Is he involved with the Connexions service? The can help him to explore other options - it could be that a different environment such as FE college might suit him better.

 

If school is the trigger for his stress and aggression, removing him might resolve some of it. You could get him signed off school due to stress and this would enable him to have home tuition.

 

Re diagnosis and mental health services, 16 is an awkward age: caught between child and adult services and in danger of falling through the gap, many services can't decide where 16 /17 year old actually fit. You will find that most services will treat him as an adult capable of making his own decisions and won't do anything without his consent. So any route you go down will require his full cooperation, including exploring the possibility of an AS diagnosis. It's important that he is seen by a professional with expertise in ASD so that you have confidence in the decision. Many people with AS can speak to adults, make eye contact and perform well in tests so that doesn't tell you much on its own.

 

I think you have to keep pestering the professionals, including your GP and making a nuisance of yourself until they listen - it's the only way. Telling them that the stress is impacting on your whole family might help.

 

 

K x

Edited by Kathryn

Share this post


Link to post
Share on other sites

My son is lovely and clever...that is what everybody says because they don't live at home with us. So to get him diagnosed has been an absolute challenge. He is younger than yours but I had been raising concerns from nearly the word go and he was finally diagnosed at 10 when I lost my rag at the GP and refused to leave unless he woud refer us to the paediatrician. I have asked to be referred to CAMHS and got a very long polite letter back saying it was very difficult to parent an ASD child and that I should keep going with the antidepressant and get access to counselling for me. I don't want counselling thank you very much, I want help for my son !!!!! It is not having an ASD child which is making me unwell, it is the lack of support! Fight for it, that's all I can say!

Good luck,

>:D<<'> >:D<<'>

Share this post


Link to post
Share on other sites
My son is lovely and clever...that is what everybody says because they don't live at home with us. So to get him diagnosed has been an absolute challenge. He is younger than yours but I had been raising concerns from nearly the word go and he was finally diagnosed at 10 when I lost my rag at the GP and refused to leave unless he woud refer us to the paediatrician. I have asked to be referred to CAMHS and got a very long polite letter back saying it was very difficult to parent an ASD child and that I should keep going with the antidepressant and get access to counselling for me. I don't want counselling thank you very much, I want help for my son !!!!! It is not having an ASD child which is making me unwell, it is the lack of support! Fight for it, that's all I can say!

Good luck,

>:D<<'> >:D<<'>

 

Blimey, exactly the same thing happened to me, Parent Support arranged councelling for me because I was getting more and more stressed due to being beaten up in the playground by my son every evening after school from the day he started and yet school said he was fine! How frustrated?!

 

In the end, at the begining of last year I sat in a room at school for an hour with The Ed Phyc, Parent Support, the SENCO and my husband and refused to move until he was referred to CHAMS, the Ed Phyc kept trying to tell me I just had to do a reward chart (because they work for her daughter!!) with him and I constantly told her I had been on 3 parenting courses and reward chards don't work with him but only antagonise him further.

 

He was diagnosed last year at nearly 9, I first told the Health Visitor and Doctors that I was worried when he was 7 months old.

 

If you knew me before all this and could see me now you wouldn't recognise the person you see and hear.

 

What I always say is keep a detailed diary. Record everything down to all he tiny stresses, the funny noises, the rage and what started it, record when and why he is calm and what started the rage, everything. Record when he went to bed, if he slept, could he get up in the morning, can he get up at the weekend and not on a school day etc etc etc. My son kicked off over everything, just being asked to but his shoes on was enough for him to lash out of tantrum for an hour. I wrote it all down, I was embarrassed to hand it in to school but that is when they realised that things were terrible - parent support that is.

 

Keep plodding on, do it for your own sanity because in doing something you are being a great loving parent and that shows through your post. Youre here now so we will listen and help where we can.

 

xxx

 

 

Share this post


Link to post
Share on other sites

You might also find it helpful to contact the National Autistic Society and IPSEA.

They should be able to give you some advice about getting a diagnosis locally. From the difficulties you describe, I think it would be useful for him to be assessed by a multi disciplinary team that has experience of ASDs including Aspergers. Because, as you have said, he is not coping or using appropriate behaviour. If you reach the end of your tether and he is thrown out, he has no life skills at all and no-one is working on his behaviour. This sounds like a bleak path that could even lead to prison, and yet you say he is intelligent.

And maintaining eye contact is not a sole decider on whether someone has Aspergers or not. My own son is autistic and the Ed Psychologist states that he can make appropriate eye contact depending on the cognitive load. The more he has to concentrate and think the less eye contact there is. There are also several reasons for lack of eye contact. Some cannot give substantial eye contact because they cannot 'multi-task' in this way. They can talk but not look at you at the same time. Others find eye contact painful. Others tend to use peripheral vision. Others have prosopoagnosia and don't make eye contact because it does not provide them with any information. Some don't use eye contact because it is a 'social skill' they have never been taught - etc etc.

I am sorry you are at such a bad place right now when he is practically leaving school. I do feel you and your child have been let down.

I would push for assessments and a diagnosis.

If he is intelligent and yet not expected to get a single qualification, then the school should have moved him onto School Action, then School Action Plus (SAP). At SAP stage they should have contacted outside professionals such as the Speech and Language Therapist and the Educational Psychologist to assess him to find out what his difficulties are. If he has difficulties with language, and cannot access whole class learning, or demonstrate learning then he is going to find it very frustrating to be all day in school achieving nothing. That stress/anxiety/anger and frustration is going to come out.

Have you looked at the DSM IV criteria for Autism and Aspergers to see if that sounds like your son.

I would write down all his difficulties and talk with the NAS about how to proceed. Start always putting things in writing as this is the only evidence you have that any of these issues have ever been raised or discussed. Then you could put in a written request for a referal to your GP (ie. diagnosis via Health). The other approach is via Education. In this approach you would again list all the difficulties you see in your child (with examples), and send a copy of that into school saying that you are not happy with the lack of progress he has made over the years and that you want the school to contact outside professionals (Speech Therapist and Ed Psych) to assess him. As he is at secondary school, they don't usually have contact with the SALT past primary years unless they have a diagnosis of a Speech Disorder. But I am presuming that he has never been assessed.

Most LEAs also have an Autism Outreach Teacher. You could speak to her for advice, and could also ask the school to contact her. Check if the AOT needs a diagnosis before she gets involved. Ours doesn't need a diagnosis, but they do need school to contact them.

All of this is going to take some time to happen. But I think you do need to start this process because although his secondary school days are nearly over, he could go to college. And he will need to become an independent adult that is able to function in society.

Your LEA should also have a Parent Partnership which you can use for help and advice. They can guide you through the maze of the system and they can also come to school for any meetings you have with them or the LEA and they can give you advice.

 

Share this post


Link to post
Share on other sites

Gosh I don't know where to start. I guess thank you to everyone who has replied. I don't know how to quote from another person's reply but:

 

"My son is lovely and clever...that is what everybody says because they don't live at home with us. So to get him diagnosed has been an absolute challenge. He is younger than yours but I had been raising concerns from nearly the word go and he was finally diagnosed at 10 when I lost my rag at the GP and refused to leave unless he woud refer us to the paediatrician. I have asked to be referred to CAMHS and got a very long polite letter back saying it was very difficult to parent an ASD child and that I should keep going with the antidepressant and get access to counselling for me. I don't want counselling thank you very much, I want help for my son !!!!! It is not having an ASD child which is making me unwell, it is the lack of support! Fight for it, that's all I can say!"

 

Frogslegsl you have absolutely hit the nail on the head. I feel like everyone thinks I just can't cope and I'm a rubbish parent but I know I am a good parent and I dread to think where my son would be now if I wasn't so strong and able to cope. My family just don't get it because he's a little angel for them. They think I've just been too soft which is absolutely not true. Thank god I have two other children who are success stories.

 

Kathryn what you said is so true about that transition between child and adult. My GP said my son would have to make an appointment and come in himself and state what his problems are. Like that is ever going to happen! I feel like the school are no longer interested as he leaves in May next year and they know he is not going to achieve. They are biding time till they can get rid of him. He cannot stick at any job (lasted 3 days on work experience and 1 week on paper round) and going to college is not a realistic option as he cannot sustain concentration in any kind of setting, be that classroom, vocational or whatever. And Sally thank you for your helpful suggestions and insight.

 

I am so grateful for all of your helpful suggestions and I will definitely be following some of them. I am determined to continue to try to get him diagnosed. To give a more balanced view of my son I just wanted to add that he is a very very loving person and absolutely adores me. He hugs me and kisses me and tells me how much he loves me and we have great conversations where he will ask me anything (and I mean anything!). Aggression aside we actually have a great connection and I love him to bits. Just wish we didn't have violent outrage when I ask him to go easy on the ham. I will keep checking in on this forum and let you know how I get on.

Share this post


Link to post
Share on other sites

I would make an appointment with Parents in Partnership today so you can find out what you have to do to get things started.

 

Make a record of all his behaviour from birth and take it with you as they may be interested to see it, it is significant and will help if you write it down so you don't miss anything out when you speek face to face.

 

In our local Secondary School they are piloting keeping the kids in school until they are 18, is that happening where you are? If so you have a couple more years. If not then I would be enroling him on a college course of some sort for next year just so he is still in the Education system for a while longer which will mean you still have access to advice and support.

Share this post


Link to post
Share on other sites

Hi, just wanted to give you some of these, >:D<<'> and glad you found this forum, :thumbs: My son has many great charachteristics too :devil: but its very exhausting having to deal with all you have to deal with alone, :blink: I cant believe the schools attitude, :angry: though I believe what your saying, its just that it makes me soo mad that todays education is not meeting some young peoples needs. :shame:

 

I would recommend these for additional help.

 

Contact a family. :dance:

 

Young Minds :clap:

 

It sounds like your going throw a real rough time who in all the struggles dearly loves her son, your clearly a fighter, :ninja: and I think its a good job he has a mum like you, :party: dont give up on him is all I can recommend, fight all the way to get him the help he needs. :ninja:

 

You dont need dx either to get the support your son needs.

 

Has your son had an assessment of needs from the Social serivces.

 

Contact A family have more information on community care needs.

 

I wish you all the best and it is nice to meet you. :)

 

JsMumxxxx ;)

Edited by JsMum

Share this post


Link to post
Share on other sites
He has single handedly brought our family to its knees. The smallest of things sends him into a rage that we just cannot deal with.

 

Hi Missiwissy,

 

Can't offer any advice sorry - but wanted to sympathise. Our daughter turned 16 in July and your one statement above struck such a chord and we keep thinking surely this can't be allowed to go on. Unfortunately though I'm not quite sure what support if any is available and it does go on and on and on.

 

Our daughter was diagnosed at 12yrs old - and has been seeing CAMHS again for this past year because things escalated again (we've always had aggression issues) - but I have nothing constructive to offer from their input other than they've recently (since Jun) prescribed anti-depressants - and we've just been told this week that the anti-depressants can have impulsive/aggressive side effects - so it's a lose lose situation.

 

When her aggression or self harming has been so bad that we fear for her/our lives we were told by them to call an ambulance and that she would be sedated - unfortunately this then can include the police being involved and the last occasion of her being taken to hospital - the A&E doctor asked why was she there? and didn't we have a plan of action from CAMHS in this situation? they didn't sedate her and just stood back (7 hospital staff) and refused to help my hubby while she was berserk attacking herself - it makes you want to cry..

 

Also during our appt. this week they mentioned transferring/discharging because she is now 16 - so I'm not quite sure how much time you have left for CAMHS input.

 

Take care, chin up,

Jb x

 

 

 

 

Share this post


Link to post
Share on other sites

Hi jb, Thanks for posting. I'm so sorry your having all this trouble. I keep reading your post and shaking my head. I feel for you so much, and think your daughter and you and your family are having even more difficulty than us. I've taken a lot of positives from everyone that has posted for me and feel like I have a few more avenues to pursue now so maybe perhaps I don't feel as helpless as I did. You've already been down those paths though and are still suffering. I believe though that as parents our own mental health is of paramount importance, not only for the well being of other children you may have, but the wellbeing of our AS children. If we break down, the whole system breaks down! I've always been determined to keep my son in my house and under my care until he is an adult regardless of what he throws back at me. Thats my job and I take it seriously. But things are reaching breaking point and we'll see how it goes. I cannot rule out my son leaving our household as much as that would break my heart. But I have other children to consider and my own mental health to consider. Maybe I would be better able to support my son if he lived away from me and I wasn't dealing with him on a daily basis. I don't know. Not sure if you post here regularly but I've found more support here in the last 24 hours than 16 years of friends, family, schools and GPs. You are fantastic to have survived this long, and I hope you find some way through. Good luck.

Share this post


Link to post
Share on other sites
Hi Missiwissy,

 

Can't offer any advice sorry - but wanted to sympathise. Our daughter turned 16 in July and your one statement above struck such a chord and we keep thinking surely this can't be allowed to go on. Unfortunately though I'm not quite sure what support if any is available and it does go on and on and on.

 

Our daughter was diagnosed at 12yrs old - and has been seeing CAMHS again for this past year because things escalated again (we've always had aggression issues) - but I have nothing constructive to offer from their input other than they've recently (since Jun) prescribed anti-depressants - and we've just been told this week that the anti-depressants can have impulsive/aggressive side effects - so it's a lose lose situation.

 

When her aggression or self harming has been so bad that we fear for her/our lives we were told by them to call an ambulance and that she would be sedated - unfortunately this then can include the police being involved and the last occasion of her being taken to hospital - the A&E doctor asked why was she there? and didn't we have a plan of action from CAMHS in this situation? they didn't sedate her and just stood back (7 hospital staff) and refused to help my hubby while she was berserk attacking herself - it makes you want to cry..

 

Also during our appt. this week they mentioned transferring/discharging because she is now 16 - so I'm not quite sure how much time you have left for CAMHS input.

 

Take care, chin up,

Jb x

 

I was told by Social services to phone the police when J becomes violent and aggression on one accasion where he was destroying furniture and in a rage the police was called and when they came they were expecting a big 18 year old but when they saw an 8 year old they couldnt believe it, they then asked me where was our support from social services I said, "oh you, social services told me to ring you guys" he said well lets see what we can do for you and he did a referral back to them, It resulted in additional sessional work and later on a carer for the evenings, though that ended after its service closed, were in consultations again with social services as there is real risk of the police been called again.

 

I would defo put in a complaint to the PALS who sort out NHS issues duty of care, you cant be pushed from one organisation to another.

 

I would defo look at a reassessment of her needs and also look at a transition plan, contact a family are a good body to get more community care situations sorted out, Im in the middle of it all myself.

 

Hope that things improve soonxxxx

JsMumxxxxx

 

 

 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...