Help - son has become a recluse

[frances-mary]

Has any one out there any advice on what I can do next.?

 

Tristan is 14 (diagnosed with aspergers when 8)and had been struggling in mainstream education.

He has now taken to his darkened bedroon, won't go to school, He has no social contact and his eating and sleeping pattens are now totaly disrupted.

He refuses all help offered (child & family thaerpy and councelling) I have made doctors appointment for him but he refuses to go to them.

 

I have no power or influence over him and he is just abusive and sometimes viiolent when I try.

 

ANY suggestions gratefully recieved

[bid]

Hi <'>

 

It does sound as though your son is very depressed. I know my son's anxiety and depression escalated out of control at about the same age, with the growing realisation of how 'different' he was compared to his peers, combined with changing expectations at school.

 

Can anyone from CAMHS or another AS specialist visit him at home? You could also contact your Autism Outreach Team.

 

I really do sympathise with you. My son was out of school for 6 months, but then we were lucky enough to get a place at a residential special school for AS. He desperately wanted to be with other youngsters 'like him', so he was very happy to go and he's made brilliant progress.

 

Do you mind me asking if your son self-harms? This was a big problem for my son, but since he's had the right support this has stopped, as has his need for medication.

 

Good luck...I know a few other members have had this sort of experience too, so hopefully they'll be along soon with more ideas.

 

Take care,

 

Bid <'>

Edited June 23, 2005 by bid

[baddad]

Hi frances mary -

Haven't any advice to help Tristan, I'm afraid, but i would advise that you make sure everyone who needs to be aware is fully aware of the situation... This is not something a parent should have to manage without support and there could be personal repurcussions if i.e. social services/schools/LEA's are not fully informed and involved.

Totally agree with Bid, that if the mountain won't come to mohammed then... They may not like it, but if they can't or won't come to him then they can't really criticise anything you might do, or apportion blame if the situation should escalate. That said, your son IS a minor, and that means that, like it or not, you do have parental responsibilty and you may have to apply some unwelcome pressure. I'm not under any illusions about how hard that might be, but sometimes 'tough love' has to be a starting point to get the other kind back on track.

Very best

BD

[bevalee]

Hi Frances-Mary

 

The very same thing happened to my son at 14. He couldn't cope any longer in mainstream school. He was also very abusive.

 

He had to see a psychiatrist who diagnosed him with severe anxiety/depression which had turned into school phobia because of his AS.

 

Have you thought of looking at specialist AS provision for your son? My son started a specialist AS school in April this year, it was a long fight but he is enjoying it so much and is in school full time now. And has improved already.

 

Have you consulted your GP or your local Camhs?

 

I do hope things improve, i know how you feel <'> <'>

[frances-mary]

Thank you so much for taking the time to reply. I just feel so lost at the momment and don't know where to try and get help from next.

excuse my ignorance but what is CAMHS thats a new one on me.

 

I was intested that 2 of your children were in special schools. I have contacted 3 that I know of but all required a statement and to be recomended by the education authoirty. Tristan does not even have a statement (although I am fighting for one at the mommet I have been told by a parent support goup that it is going to be very difficult to get) Tristan has also indicated that he would rather die than go away to school.

 

I do realise that at 14 he is only a minor but I have no idea how I can force him to do anything he takes against. I have driven him to the GP but he will not get out of the car. I have had the consultant Psychartrist come round on a home visit ,as Tris wouldn't go to them. He cleverly gave them all the answers they wanted and after they had left become so violent I had to leave the house for my own safety.

 

Thanks for being out here I feel less isolated knowing others do really understand

[oracle]

Hi Frances Mary,

 

It sound to me as if your son is very depressed. This happened to us with our son David when he was aged 12. I personally feel that he had a breakdown. Baddad is correct no one should have to deal with this alone but we did because the services were dreadful. CAMHS stand for Child and Adolesence Mental Health Services. Some are excellent but I would certainly advise that whoever tries to help your son through this MUST know a great deal about autism and what they are doing. Professionals who do not can make things worse. The only way to be sure is to ask or to find out who the experts are in your area.

 

David lived in a darkened room for two years. He would not leave his room to eat or drink. He would not speak to us. He wrote messages on his walls. He stared at his walls and he could go for 72 hours without sleep. This was mainly because he could no longer cope and did not want to go back again. He never did. In the end I promised David he would never have to return and stuck with it. The hardest thing is to get back was the will to do anything. It took us two years to even begin to do this but we were alone. The professionals gave me advice that I knew was totally wrong for David. David also refused to go anywhere and see anyone. He even threw out his clothes and binned his shoes so that he could no longer leave the house.

 

David was very abusive and also violent and I learned the hard way that sometimes it was best to walk away and give him the space he so badly needed. I also learned not to be a doormat. Depression is dreaful but not an excuse for having a go at your family your every waking moment. But there is a very fine line between space and excluding yourself from life. So I did not give up on him and slowly we turned a corner and began on the road back to life.

 

Has your son any interests? Could you try and use these to regain his trust and communications? I did things with David that I hated just to see a spark of interest flicker in his eyes. Age also plays a great part here well it did with David. There was no magic wand but we did get through this dreadful time. And David is now as happy and out going as I believe he will ever be. He loves to go out with his elder brother and his mates and has even taught himself football so that he can join in with the coversations. He is a wizz at Pub Quizz's and love to eat out. He is 18 next month.

 

This may all appear to be immpossible for your son at the moment but I would like to give you the hope that it can happen. It did for us and believe me we lived a living nighmare for three years.

 

Carole

[florrie]

I am so sorry to hear of your difficulties withy your son and my sympathy really goes out to him as he seems to be suffering a great deal.

 

My son also had a breakdown at the age of 12 and became both withdraw and violent, and I had to take him out of school, his education plan had been inappropriate for his needs, when he came out for good he improved but he went to an alternative school where he could follow his interests, this was paid for by a charity.I found out months after he came out of school how horrifically he had been bullied by gangs of older children, stealing his lunch money everyday and being physically violent to him. He wasn't able to communicate this and withdrew and became violent as a result.

 

I'm not saying this is happening to your child, but there is almost certainly a problem that you need to find out what it is, my son also won't attend a doctor or anything , it is very difficult.

 

I really hope you can find out what is making him so unhappy

[bluejean-genie]

Hi

my sympathy goes to both you and your son.

I found CAHM's a great help when our 13yr old began to closet himself in his darkened room refusing to go to school or to go out. CAMH's referred Nat to an educational centre for children unable to go to school and he is attempting to go in again this next week (fingers crossed) Nat now has a youth worker who sees him every week to support him. The Chartered Psychologist has said it will be a long slow process but things will get better.

[bid]

Hi again

 

My PP lady also told me I would never get a statement for my son because he was coming up for 15.

 

Luckily I had just found this forum...I listened to the fantastic advice and support from the people here and ignored her...the rest, as they say, is history!!

 

Even IPSEA were doubtful...but I felt I had nothing to lose by giving it my all because my son had literally nothing.

 

I'm so grateful to the people on this forum <'>

 

It was a huge battle, but he went from no statement and out of school (self-harming, mental health probs with no future) to 6 months later a very good statement and a place at a residential special school for AS.

 

PM me if you want details of his school.

 

Bid <'>

[Tez]

Hi,

Another one who can totally relate to your experience. My 13 year old AS son is very depressed, started self harming, doesn't go to school, lives and eats in his bedroom where he refuses to have the curtains open, won't speak unless it's in a funny made up language of signs, sounds and made-up words and generally refuses to leave the house.

 

I have found that things have slowly improved since he's been out of school. I have now promised him that he will only return to school when he is ready, even if that means deregistering him and home-schooling. I lose count of how long it's been but I think that it's been about 8 weeks now apart from one brief disastrous attempt at a phased return. Things are no where back to "normal" but they are improving. He attended a Scout Camp last weekend and stuck it out only calling me 3 times to go over and reassure him. He is slowly beginning to communicate again and we occasionally see a smile.

 

CAHMS have helped by backing his absence from school on medical grounds and locally they are quite influential in persuading the LEA to issue statements. I do sympathise with your problem but I don't think that there are any easy answers. Some people find that a short course of medication helps as long as it's not used long term or to cover up the fact that your child isn't coping. Everyone has different views on this and I think you just have to listen to medical opinion but make your decisions based on instinct.

 

Having read through others posts the recurring theme seems to be that school is the cause, sort out the schooling problem (if only!!!!) and the rest seems to fall into place.

[asereht]

Frances -mary

my son is almost the same as yours. He is the same age. I have pm'd you.

 

T

[Suze]

Hi Frances Mary and all other parents who have ,or are suffering with their teens in this way.It seems to be a big problem for them when they hit their teen years by reading some of these posts. My son had a bad episode when he was six but things have been on an even keel since then (apart from the usual problems). I hope he can cope with the times ahead it seems so much harder for them to cope... <'> <'> <'> <'> <'> <'> <'> <'> <'> , to all them mums and dads and kids.

[bevalee]

Hi Francis Mary

 

My son was 14 before he got a statement, actually nearly 15.

 

With the mental health problems he had and the AS/ADHD, i was also told i wouldn't get a statement. So don't give up! <'>

 

My son goes to the same residential school as Bid's son, and its a wonderful place for him.

 

He didn't want to go away to a residential school either, but when he visited the school he couldn't wait to start!

 

Lots of <'> <'>

[Kathryn]

Hi Frances-mary

 

I feel I have to add my voice to this thread - the situations are so familiar!

 

My daughter is 16 and is slowly recovering from a breakdown which began about this time last year.

 

Since October she has been unable to attend school, and went ino a severe depression which peaked in January.

 

For about three months she didn't speak at all, couldn't dress or wash herself, had frequent rages and never left the house. She couldn't and wouldn't engage in any kind of therapy, and there were in any case few professionals who could grasp what was going on.

 

During this time we have been battling to get a statement, which is imminent, and we hope she will go to the same school as Bid's son and Bevalee's son It has been (and still is) a long hard fight but I don't regret going down this route which I did against the advice of many (she was "too old" etc etc..).

 

She is much improved: yesterday she left the house on her own for the first time in eight months (walked to the library).

 

My daughter has also refused to see various professionals, so I sympathise: so far she has rejected a psychotherapist, an occupational therapist and art therapist - not without reason I have to say . She hates being "analysed"! (even children with ASD can suss people) and she likes the social worker best as he can talk endlessly about Star Wars!

 

I'm sure the right person will come along who can genuinely connect with your son and help him, but it is very frustrating in the meantime.

 

Don't give up, as Bevalee says. Loads of people will tell you what isn't possible. Don't listen!

 

K

[Hectorshouse]

Reading this made me cry!

 

Why do our children have to suffer so much, Frances-Mary, you are not alone and neither is your son.

 

It breaks my heart when T locks himself away, talking to himself for hours, telling me he wishes he as dead, never been born etc ... I know about teenage angst, but AS angst is dreadful, I lost my husband to depression, and I'm damned if I'm going to lose my son that way as well.

 

HHxx

[Tez]

Sometimes things seem very bleak, particularly when you're in the middle of dealing with a crisis to which there are no easy answers. Knowing what a difficult time my son is having, his Deputy Head thought that it might be helpful to meet a former pupil of his with AS who he'd helped through similar difficulties to my son's.

 

"M" started having real difficulties in Year 8 which culminated in Year 9 with him being unable to force himself through the school gates. With help, and with finding a school placement and Mentors that are right for him "M" is a different person. He sits on the National Youth Council, he has just completed his GCSEs and hopes to go to a residential college in September to do 5 A Levels, he has assisted his former Parent Partnership advisor in establishing a youth facility for youngsters with AS and is just generally a happy, successful teenager. This hasn't been achieved without difficulties, there were many wrong moves and stumbling blocks along the way but with perserverance he has regained his life.

 

"M" did say that none of the measures that ultimately helped him would have had any success if he hadn't had a 6 month complete break from school, a sentiment that I know is shared by Carole, and which I know is also true of my son.

 

Meeting this boy and his father certainly gave me hope for the future. If my son is as happy as this boy in 2 years time I will believe that all my efforts will have been worthwhile. I wish you could all have met him so you could all see what is possible given the right environment and support.

Edited June 28, 2005 by Tez

[frances-mary]

Thank you so much to every one who has responded to my plea. I had never used the forum before but in the last few days it has become my life line.

I will take your advice and I intend to fight for Tris.

The thought that other children are suffering in the same way fills me with such sadness and yet I must be honest it has also filled me with such hope - I just didn't realise we wern't alone......

The problems are still the same but the isolation isn't.

 

Thank you

[CarerQuie]

Please keep fighting for Tris;you'll get there in the end.xx

[lynyona]

hi frances mary nice to meet you. My son hardly ever leaves the house and his statementing worked the other way round he was statemented with special needs at 8 years old and it wasnt until he was about to leave school at 16 that i got someone to listen to my concerns that there was more to his behaviour etc than special needs.He went to a special school from 11 as he wouldnt have coped in mainstream education.When we had the appoinment to see the school dr for his last medical i expresed my concerns and he referred us to a clinical psycologist from camhs and we waited nearly 18 months for an appointment which thenm followed on the assessment she had to come to the house as she knew that it was easier for him to be in his own home environment.A month before his 18th birthday we got the results of the assessment.Yes he was on the autistic spectrum he got the results in the test that would be expected from a 7 1/2 to 8 year old.I myself think he is more like an aspie and it was the best thing i ever did finding this forum as it as been a wonderful sounding board and listening ear and cannot believe all that i have learned since being here.But as for support from other quarters it is now non existant at 19 years old so we just go on through the groundhog day process but keep pushing for what you thinks right for your child maybe if i had done earlier the support might have been better than it had been. lynn

[Alli]

Frances-Mary

Some very sound advice has been given. I hope things go better for you.

Alli