parent needing support

[BBBee]

saw this thread and thought you might be able to help.

BUMP

Her situation sounds trully awful. I really hate this. How can someone be so cruel to another human being is beyong me.

Just bumping as I cannot give her any advice, don't live in Ireland and don't know enough about autism. Hopefully someone can give her a hand.

Hello and thank you to the kind people who have welcomed me as I only just found this website and would appreciate any advice or just a chat, in paticular I would like to thank BBBEE.

I am a single parent Mum to a 16 year old who has Aspergers, he was only diagnosed last year, was always a handfull but so good at school, was only at home he was a nightmare, physically and verbally abusive to me in particular, after I left marriage he was badly hurt physically and emotionally by his Dad, he took an overdose of sedatives and I found him lying on the floor and got him to casualty where he told the psychiatrist exactly how he was going to try it again and again until he suceeded, I was taken into a side room and told there were no child beds for him and told what to write, that I take full responsibility for his safety, I did say at the time that I found it a disgusting pressure to put on a Mum but there was no alternative but to take him home, there has been hardly any sleep had since then because he never says anything he does not mean.

I have attended many meetings in an attenpt to get him help as he has not left the house in over 2 years, cannot sleep at night so he sleeps all day, suffers badly from what he perceives as excess noise so we walk on egg shells to keep him calm, any attempt to talk to him about our circumstances has him flip and retreat, I hardly see him as he rarely comes out of his room, I do go lie on his bed but it depends on mood he is in whether I am welcome or not, if he could just give me a kind word I would be happy, he never washes, every 6 weeks I manage to convince him to get in shower, he wears the same clothes day and night, sleeps with his shoes on, will only eat chicken but if anything upsets him will refuse to eat at all, I love him so much, I will not give up on him, I have become a thorn in the professionals side as I am demanding help but still none has arrived and I am bone weary and sick of coping with all of this on my own with no break and no adult company, I love my child but I hate my life.

I would be very grateful for any advice anyone may have.

xxx

Hello and nice to meet you.
sorry I can't help as dd has cp. but there are a lot of people on here who are wonderfull and will be able to offer you advice and a shoulder.

bumping this for you myhandle.

Hi Myhandle, glad you've found us here.

It really is a situation that you shouldn't have to be facing on your own, and I am so sad that you've been through all of this with so little help from the professionals and support teams who should have been there for you both.

On the other thread, I had asked if you had been in contact with the Irish autism support groups at all. I wish I knew a lot about support in Ireland, but alas I don't. Is there any sort of respite care available over there? I'm guessing 'not a lot'?

What you write about your son seems to be typical of a lot of lads who don't get support at the worst of the teenage years. He's finding the world and any changes totally overwhelming, and without the right help to get through it, he's doing what he can: Retreating to a safe place.

Has he tried earplugs or headphones to help cancel out any noise, can I ask? If you're able to tell us more about what you've tried or not tried, that would help. Otherwise, just keep talking, and we'll keep listening and doing our best to support you.

I'm on the autistic spectrum myself, my hubby is, and I have a son who's dyslexic, so there's been plenty of opportunity to know how it feels as a carer as well as someone with a disability. It's not easy.

If you can, do one nice thing for yourself every day. It's something I was taught. Even a tiny thing - painting nails, reading a magazine, having a few mins in the bath, watching a good tele program, anything that gives you that little bit of breathing space and works for you.

Keep talking with us?

Thank you Amber,

Yes I am in touch with Autism over here but as they have had no other like my son, they have not a clue what to do, they did visit home but he stayed beind door and would not show his face to them, they started off by "you know how worried your Mum is" I was furious, I knew as soon as they left he would give it to me with both barrels as he presumed I had got them in, because of his "attitude" they said he was too aggressive for them, he wasn't, simply told them to "fukin fast forward or I'm off" he was still behind the living room door, when I went mad at them, they explained that they see children at young age and help guide them through to my son's age and they had never come across this before, they also said that because of overdose they assumed that the psych team would be dealing with him and psych team presumed that Autism were helping, all bloody nonsence as I would be on the phone to both every Monday morning and wait for a call back that never came, only when I started roaring about going public did they get their fingers out and have me forwarded to social work, took them 3 months to come up with a meeting and only 2 out of stated 13 professionals turned up, I now have to wait till they type this up and then advertise for someone to train up, I firmy believe they are wasting time until he is 18 then he is out of the picture completely, they do not know what to do so they do nothing, but I will not give up and they know it.

I also recorded all conversations I had with them and informed them afterwards as I was sick of the lies and promises, they treat me so differently now.

Yes he uses ear phones constantly on low as sound, even two people talking at once has him flip, he is 6ft 2 and built like a brick shed house so when he blows he really blows.

He has insomnia but unless he lets the doctor see him which he wont she will not prescibe anything to him as he swallowed all the xanax he had previously, I have tried relaxation music and asked if he would try massage, accupuncture etc but he investigates everything before making his choice which is normally no.

He has huge IQ, is now self taught and built his own computer, I am not in the east bit worried about his education.

I found a residential place many miles away that specialises in Aspergers Syndrome, 24 hour round the clock care but powers that be ruled it out with out finding out anything about it, they only have extreme cases like my son's but the cost is astronomical and they refused funding out right, my argument was that mental health for either me or eventually my son would cost them much much more but the hard hearted Basta*ds are only out to save money whilst driving the latest car.

I wear my heart on my sleeve, have now such a big mouth, have photographic memory for all that affects me emotionally so god knows how much longer I can stay sane, its like head butting a brick wall, the letters I have sent to get help should have had me locked up by now as I am like a dog with a bone.

Whenever I ask him what does he see in the future he will just say "don't think about it" any personal emotional talk has him retreat and get verbally aggressive.

He does want to do open university courses but does not want to read all the instructions on how to apply etc, it bores him he says.

The consultant psych wrote that best place for him is at home but he does not live this life, said he will come out of it eventually, I doubt he even remembers my son's name, he has now left, I wish I had the chane to tell him what I think about him, the fecking eejit.

Thank god I found this site, I am on dial up so don't get on as much as I would like but have ordered broadband.

Thank you all

xxx

Thank you Amber,

Yes I am in touch with Autism over here but as they have had no other like my son, they have not a clue what to do, they did visit home but he stayed beind door and would not show his face to them, they started off by "you know how worried your Mum is" I was furious, I knew as soon as they left he would give it to me with both barrels as he presumed I had got them in, because of his "attitude" they said he was too aggressive for them, he wasn't, simply told them to "fukin fast forward or I'm off" he was still behind the living room door, when I went mad at them, they explained that they see children at young age and help guide them through to my son's age and they had never come across this before, they also said that because of overdose they assumed that the psych team would be dealing with him and psych team presumed that Autism were helping, all bloody nonsence as I would be on the phone to both every Monday morning and wait for a call back that never came, only when I started roaring about going public did they get their fingers out and have me forwarded to social work, took them 3 months to come up with a meeting and only 2 out of stated 13 professionals turned up, I now have to wait till they type this up and then advertise for someone to train up, I firmy believe they are wasting time until he is 18 then he is out of the picture completely, they do not know what to do so they do nothing, but I will not give up and they know it.

I also recorded all conversations I had with them and informed them afterwards as I was sick of the lies and promises, they treat me so differently now.

Yes he uses ear phones constantly on low as sound, even two people talking at once has him flip, he is 6ft 2 and built like a brick shed house so when he blows he really blows.

He has insomnia but unless he lets the doctor see him which he wont she will not prescibe anything to him as he swallowed all the xanax he had previously, I have tried relaxation music and asked if he would try massage, accupuncture etc but he investigates everything before making his choice which is normally no.

He has huge IQ, is now self taught and built his own computer, I am not in the least bit worried about his education.

I found a residential place many miles away that specialises in Aspergers Syndrome, 24 hour round the clock care but powers that be ruled it out with out finding out anything about it, they only have extreme cases like my son's but the cost is astronomical and they refused funding out right, my argument was that mental health for either me or eventually my son would cost them much much more but the hard hearted Basta*ds are only out to save money whilst driving the latest car.

I wear my heart on my sleeve, have now such a big mouth, have photographic memory for all that affects me emotionally so god knows how much longer I can stay sane, its like head butting a brick wall, the letters I have sent to get help should have had me locked up by now as I am like a dog with a bone.

Whenever I ask him what does he see in the future he will just say "don't think about it" any personal emotional talk has him retreat and get verbally aggressive.

He does want to do open university courses but does not want to read all the instructions on how to apply etc, it bores him he says.

The consultant psych wrote that best place for him is at home but he does not live this life, said he will come out of it eventually, I doubt he even remembers my son's name, he has now left, I wish I had the chane to tell him what I think about him, the fecking eejit.

Thank god I found this site, I am on dial up so don't get on as much as I would like but have ordered broadband.

Thank you all

xxx

MyHandle, you are a real fighter!
These people seem to have just given up on your son. I think maybe your idea of going public the way forward, get them into action. I just wonder how your son would react to all the attention?
Keep strong.

Hi Tiny,

I told my son about the residential place and he read up on it and said don't know, maybe, which was great as normally it would be a no, he asked me about the area, was there a college there etc which was his first sign of looking towards his future, yes he would hate it at first, probably hate me too but I know it would turn his life around, the Managing Director came to house and gave me full run down of the place, the structure etc, my son would thrive there as he loves structure and routine, he knows where he is then, its just at home with me that he thinks he is the boss.

I did contact the media, still in contact with them but as powers that be are being seen to do something they want to wait and see what they come up with.

Son will go mad if I do go public, is extremely shy which he covers up with aggression, when he finds things very tough he will barricade himself in his bedroom so I cannot get in which makes me freak out as I need to see him to make sure he is ok, my fear is if I do go public it will tip him over the edge and the blame will lie with me, I don't know if I could live with that.

It absolutely infuriates me that this can happen in this day and age, if I gave birth to a child and kept it at home for over 2 years without taking it out or it seeing no one in all this time I would be locked up for cruelty, how they can just leave us to it is beyond me. Think its only my anger that keeps me going, he is a lovely kid, does not smoke, drink, bash old ladies, is capable of great things accademically but is just left to rot.

Think I shall be getting on the phone tomorrow and lambasting a few people, i no longer care about me but he does deserve better than this.
xxx

Yes, he does deserve better. So do you.

I applaud your sheer determination to make a difference despite everyone else doing so little.

I'm better at coping when I know exactly what I need to do and what's going to happen. With your son extremely unwilling to talk with anyone face to face, I wonder about using alternatives - might sound strange, but would written notes, text messages, emails to him, even pictures rather than words, help him, I wonder? I can cope a heck of a lot better in writing than I can face to face.

That's a great idea and will put it into practice.

Had long chat with him today about our options and the final one of me going public, said he would slit my throat then his own, looks like thats blown out of the water then. He does not mean it, thats his way of telling me don't dare, never will get used to hearing such things come out of his mouth though, used to have me in tears but getting tougher to it.

xxx

That residential place sounds fantastic! And it is great that your son seems open to it. I wish you could find a way of getting the funding.
I can totally understand why your son doesn't want to go to the media, it is difficult enough just being a teenager (I really didn't enjoy it!), and he is having to deal with so much more than others.
He sounds like a very clever boy.
I have no idea how you can get funding, hopefully someone more knowledgeable can help. Don't forget to let us know how you are getting on.
xx

Hi Everyone, wanted to give an update on my boy. We had computer crash so not been online for ages, never rains but it pours eh!

Today was first day of help in the house, young man a student ( told he had a degree but is in his last year at college)my son 16 yrs would not engage at all, refused to come out and even meet him or talk thru bedroom door to him, young man stayed 20mins then left saying be back on Wednesday, when I asked Autism professionals who had set this up why he would be returning I was told that it will take very long time and he would (my son) engage eventually. It has taken me a year to get this far and after 26 months of son refusing to come out of room, the race is on to see who gets the straight jacket first or so I keep telling the professionals, also found out today that there is a parents support group one Wednesday a month, no answer as to why I was not told before as I have asked often enough, jeez I am so damn frustrated, tired, angry, fed up, I want a break, a work life, a social life and a sex life ha ha, any life outside of these four walls would do.

A new psych was installed so I went to see him, lovely bedside manner, understands completely how I feel (no he bloody does not as he does not live my life nor my son's) I gave him the benefit of the doubt as he was so friendly and warm mannered, he prescribed risperdal which my son took for a week and the difference was remarkable until he investigated the brand name and went ballistic at being prescibed an anti-psychotic, returned to psych to give him feedback and to try something different as son wants meds for anxiety and insomnia, came home with seroquel and the sh*t hit the fan with son, said they are for schitzophrenics and bi polar and not recommended for under 18's due to high risk of suicide and the latest is me, his mum is wanting him to kill himself, god I cried for hours over that, he is very abusive verbally anyway and some days I can take it and others I cannot, I almost walked out the door never to return as thought what is the point, Autism prof spoke to psych today on my behalf as I rang him 3 days in a row due to what he prescribed before he would take my call, he reiterated that they are more sedative than anti psychotic but son within rights not to take if he did not want to (like I am desperate to have him on medication ) he then told Autism professional that it was not ethical to prescribe for child he has not seen (completely forgetting that within 3 weeks he has prescribed 2 different types of anti-psychotic ggrrr) without seeing my son.

Phew thanks if your still with me here.

My son is telling me what he needs, he will not see anyone so the circle goes on, I am a crap parent for not helping him get the right meds so he says but he will not leave the house to be prescibed anything

My head and heart is all over the place, I am too close to this to think straight, spent another day after his abuse crying my eyes out and now know that this is stress overload, can someone please help me see the wood from the trees so I can make a plan of action on his behalf as this cannot go on for much longer, I am in a jail here with no time of for good behaviour and getting desperate.

Many thanks

Anne xxx

Hi, I missed your earlier posts. You are so right, how can this be happening in this day and age? I can't think what you can do that you aren't doing already, well done for keeping going. Is anything happening about the residential place? It's desperately sad that they are leaving a young lad stranded in his room and not giving you any help at all.

Would he reconsider the Open Uni stuff if you offered to do the application forms?

Hi Seuss, nice to hear from you and yes he wants to do Open U course but still undecided as to which he wants. He has been in bed for 20 hours now, is not talking to me hope he wil be in better form tomorrow.x

It must be so frustrating - for both of you. I was thinking about your situation whilst trying to get my own ds (8yrs, ASD) to sleep and still couldn't think of something you haven't already tried. I think you are right and they are just trying to lie-low until he is 18 and not their responsibility. The residential place that came out to see you - would they be able to give you any advice or contacts? Hope tomorrow is a better day for you both. Take care.

Hi Seuss, thank you for thinking about my situ, unfortunately the funding for residential place which specialises in teens who have withdrawn completely with AS costs far too much for the health board here, they have quoted cost to be 20,000 euro per month but to my mind if all else has been tried and failed since he was 14 and now they have employed a student at 8 euro per hour, it tells me this is all down to money, if I had been receiving carers allowance which I do not even get (4 month waiting list here to process and would have been helpful if they had told me earlier I was entitled to it) I could have been saving this up to try and get expert help.

On a brighter note a solicitor has contacted me and offered his services for free and will contact me once he has read son's file I put together, but has told me the mere fact that the powers are now trying (after 2 years) may mean nothing can be done, will wait and see.

Thanks again and I appreciate you writing, just wish I had gotten the diagnosis much sooner.

x

You and your son seem to have been COMPLETELY let down by everyone - I can't beleive no one told you about carers allowance for a start! So much depends on money, which area you are in etc. If a resi place that specialises in teens who have withdrawn completely isn't the ideal place for your son who do they think it's for??? At least if the people mis-handling your case know you have a solicitor on the case they might pull their socks up a bit - I hope so anyway. Sorry gotta go - children are raiding the fridge. Take care.

Hi myhandle, just wanted to say hello to you, you sound like a fantastic mum to your boy. I have 2 young children, dd1 has aspergers and a very high IQ, Dd2 has Autism and no speach, my girls are still very young (4.8 and 2.7) but the help we are getting here is great. It makes me sick to think of what you and your son are going through, your son deserevs the help he needs and you deserve a break and help to cope with your son.

Please take care and keep fighting.

Hi Marne, Hi to you also, yes I know the help and support back home is far more than can be got here and wish to god I could come home, even just for the family support.

I am waiting on a solicitor getting back to me and hope he can hopefully persuade the powers in charge of the purse strings that even 4 weeks of intensive therapy at the specialised residential place would help my son come out of withdrawing phase, will never understand how they can put money before a child's quality of life, something stinks here.

Take care

Anne