Need opinions please

[bilby]

Hi,

My autistic son is now 21 and suffering with what seems a lot like post-traumatic stress syndrome from ongoing experiences he suffered from the non-supportive attitude of a support worker he had for a short while back in 2005.

He is now anguishing over the mere thought of running into that support worker whenever he goes out because of an experience where he was confronted with him while his support worker talked with the ex-support worker for about half an hour while they waited for a train.

Other support workers all like this fellow and think he's wonderful and can't understand why my son could possibly have ever had a problem with that worker and can't understand why he is still suffering (they use the word obsessing) over it all this while later.

I myself had negative experiences with this worker (each time I tried to express my concerns to him about how he had handled things and openly criticised my son he just denied he had said or done those things) and just last week I saw him coming in the opposite direction to me when I was on my own and my natural instinct was to turn and walk away from him, and I had the freedom to make this decision. I'll add that even on this occasion I was not impressed with something that he did to one of a group of clients he was greeting (he didn't appear to be working with them, just ran into them), where he went up to a client in a wheelchair and clasped his hand around their chin and jaw area and shook it hard in response to something this young fellow had said to him and I saw the look on the young fellow's face was one of annoyance in reaction.

Yesterday, on my son's behalf and request, I asked the support worker he was about to go out on community access with to allow my son the same freedom to make the decision to avoid this support worker and not be made to be exposed to him when he was in their care, because in recent weeks there have been a lot of near-misses where the old support worker was coming as they were going and when my son expressed his concern about meeting up with him, the worker told him that he was worrying over nothing and that he was a nice man and a good man and very caring. She told this to me when I voiced my concerns on my son's behalf yesterday, and I replied that I understood that was her experience with this man but it had not been our experience with him.

What do others here feel about this.

Am I doing the wrong thing? Are the support workers right? Should my son be required to interact with this man when in the community - forgive and forget?

I was about to complain about this support worker back in 2005 when he was replaced by another worker so I didn't follow through at the time.

Opinions please ...

Thanks.

[mc4_a]

Your concerns need to be addressed. If he admitted being wrong, then everyone could move on. The problem is he doesn't see it as a problem and the other support workers do not either.

This seems to be a situation that needs to be escalated to the management. You need to have time to sit down with someone and detail your points out. Point out as many direct examples of inappropriate acts as possible.

The story about the kid in the wheelchair is concerning. If you did that to a normal person that would be considered assault.

[bilby]

Thanks for replying with your thoughts and observations.

I don't believe this guy will ever admit those things that he did as there were no witnesses.

I believe my son completely though.

[Lara]

G'day bilby! You don't know how happy I am to see you post. Miss you heaps!

I would go on your gut feelings. Your son had problems with this worker and you express concerns with the worker as well. There must be some reason why your son feels this way. I don't mean to make light of this, but also wanted to mention that sometimes my son expresses negative feelings about someone because of something that might not seem very important or even rational to someone else... e.g. their beard, or something like that. Sounds as if it's more serious than that in your son's case with this worker.

Years ago my son had a great little playmate and they would spend a lot of time doing things that interested them both, but in the end my son refused to spend time with him... turned out that the father of the boy was a fairly raucous and physical person and used to laugh really loudly and pat my son on the back very hard. He actually was a very nice man, but he was overly physical and used to get in other people's space.

Apart from avoiding this worker which is going to cause continued distress anyway by the sound of it, or taking everyone else's word for him being so wonderful, I was wondering if there was some other way of working through the situation, like with a mediator... something that actually involves the worker and yourself perhaps, but that might be really uncomfortable for you as well. I've come to the conclusion with my own son that although it might not always be clear to all the other people around him, if he's concerned so greatly about something then there is cause for worry.

[Lara]

P.S. Is this worker employed by our State???

[bilby]

G'day Lara (((((((HUGE HUGS)))))))

Yes, my son too does have strikingly similar reactions as your son which I acknowledge and always take into consideration before over-reacting or judging anybody and make many allowances for exactly that possibility, but yes, this was more serious.

I think he has been left feeling betrayed and powerless because the guy just denied every instance that my son or I brought up with him, and then all of a sudden he was replaced.

This fellow is certainly hard-working as he seems to be everywhere, and I've been made aware that he is indispensable to the Agency as they are short of male workers.

I hadn't realised until recent weeks how profoundly this had left my son affected.

I also acknowledge that there will indeed be an "obsessional" component.

[bilby]

P.S. Is this worker employed by our State???

He was/is employed by an Agency funded with State funding.

[Lara]

I've gotta go for now. Running out of time this morning.
Just wanted to quickly add, if he's employed by government and you had made official complaints in the past, you could contact the Ombudsman to help sort out the situation... however, if no formal complaints have been tabled that would not be possible as far as I know. Plus, I *think* off the top of my head that there is a 12 month period of time since alleged instances have occurred in which to contact authorities or Ombudsman.

sorry if that's not too clear, but I gotta rush.
take care of yourself there. (((bilby)))

[bilby]

Thanks for taking the time and effort to respond before you go Lara - much appreciated.

Hope you're not late.

I'll now be offline for a few hours, but promise to come back later.

Thanks Lara and mc4a

[lisa6wks]

Bilby,
Regardless of what anyone else says about this carer, your son should have the freedom to decide if he doesn't like and doesn't want to be around a person, just like anyone else. Perhaps the person meant no harm, perhaps he did, only your son knows how he feels about the experience and I really don't see any reason why he should be subjected to dealing with someone he doesn't like. As a matter of fact, his new carer should stop disagreeing with him and just respect his opinion. It must be very hard to constantly be at the mercy of someone elses wishes.

Lisa

[bilby]

Thanks for adding your thoughts Lisa ... very true ~ I think that his feelings of helplessness of back then in 2005 resurfaced when the current support worker didn't allow him to express his feelings.

Yes, it must be very frustrating to literally always be at the mercy and under the influence of others, and I include myself in that equation - which is why I decided to post here as to how others felt about my handling of the situation as it stands at the moment.

Interestingly, he does not feel that I need to pass on the same message to the other support worker who has him sometimes, so he is not totally "obsessed" about it all the time.

[Isabelle]

My son was sending messages to all and more to me and I didn't react with enough confidence on him. He was so distraught at that man, that his very scent would make him nervous and would cry. Of course, I was told that the man was wonderful and doing his best for my son, it just my son was suffering from a "mood disorder" or from SAD or whatever else....

At the end he must have felt betrayed and abandoned. That man was openly negative of my son, angry, he was grabbing, tackling him, pushing and pulling him and then saying to the doctor that my son was doing all that.

If that man is so wonderful he should work with everybody else but your son. Your son has the right to choose who care for him, who can be his friend.You know how your son behaves when he likes someone, stand by your son.

There is not "obsession" on your son's part, don't believe on their explanation that your son "attachment to someone is not healthy". Our children needs consistency. They need people who are consistent in their personalities, always cool, calm, collect, building trust, rapport, has sense of humour...

He must have a reason to dislike that man.

[bilby]

Thanks Isabelle

It is so very hard to know which way to jump once they are considered adult (which is 18 here) and the parents are told that they are no longer supposed to speak on behalf of their adult son or daughter ... but what are we to do once we establish beyond doubt that there are problems that are being ignored and their concerns are just dismissed as unsubstantiated.

Well, so far it doesn't seem like I'm totally doing the wrong thing or that we're completely over-reacting either.

Thanks to all who've replied so far.

Just adding that I don't mind constructive criticism either - all thoughts and views are welcome. I try to see the big picture and everyone's side of the story.

(((((((HUGS))))))) to all!

[tgrimes]

Yesterday, on my son's behalf and request, I asked the support worker he was about to go out on community access with to allow my son the same freedom to make the decision to avoid this support worker and not be made to be exposed to him when he was in their care.....
.
Bilby -

My opinion is you have to get a good idea of how much anxiety this really is.
What exactly is he saying about a possible encounter? What are his posture changes when he talks about it? Does he look like a caged animal the closer you get to the place, or the more he talks about it? If he's not to that point yet, maybe just talking him through it will help. Make sure he knows he doesn't have to like everyone he socailizes with. You never know what he could be thinking 'the rules' are.
You can ask things like "what do you imagine is the worst thing that can happen when you meet up with counselor X"; or, "what do you think you would do if 'x' said hi to you" or ask about how he rates it on a scale of one to ten in comparison to other unpleasant situations, you might be surprised.
Personally, based on what you said I think he is avoiding hearing about himself in a third person way, as if he was reading about his life, but he was actually there. You might coach him on how to avoid that kind of (train station) situation in the future. Ask him if he wants control of that instead.

Anyway, if he is to the point of near panic over it, then of course you can shelter him from this person if you feel it is causing too much anxiety. No one needs to traumatize their kid just to make others happy. It doesn't matter if the person or thing he is scared of is 'good' or not.
Then he still can work out the fear, and desensitize without the 'imminent threat' of a real encounter for now. So if he feels he has to avoid this person for a while it should be fine.

I think it's a reasonable request you are making of them - they can handle it.
They are better equipped to 'just deal with it' than he is, so there's your argument if they give you any guff.

[tgrimes]

.... Our children needs consistency. They need people who are consistent in their personalities, always cool, calm, collect, building trust, rapport, has sense of humour...
.

Isabelle, sheesh, my kids would be lucky to have a MOM that fit that tall order.

[bilby]

The anxiety level escalated over the last few weeks and especially over the last week when there were a few near misses of meeting up with that old support worker.

Previously he would only bite his hands when remembering bad experiences with him, but that has escalated to his biting all the way up to high up on his bicep muscle area. His hands were a bloody mess.

During the last encounter at the train station, my son said that he handled it by walking away from his current support worker and the old one when they were talking and he hid out of view under the stairs leading up to an overhead bridge crossing over the tracks. He did this when they started talking about him. He said he felt that they knew he was there but did not come after him.

After reading your post above, I asked my son what he would do if this situation were to happen again and he replied that he could throw himself down onto the track if a train were to come along ... so I no longer feel any guilt or confusion as to whether I did the right thing yesterday.

So the level of anxiety is now extremely high and we obviously have a lot of working out strategies and ways of reducing and managing this and I honestly think that avoidance is the only option at present initially.

Thanks for your insightful posts everyone.

[Lara]

As a matter of fact, his new carer should stop disagreeing with him and just respect his opinion. It must be very hard to constantly be at the mercy of someone elses wishes.Lisa

Ditto! Couldn't agree more.

[Lara]

Hadn't seen your last post as we posted almost at the same time.
Yikes, bilby. That's a huge worry what's he's just said to you. Obviously this is a very BIG issue to your son.

I'm just curious as to why your son actually comes in contact with this worker still? Does he work for the same agency still but is working with other people there?

[bilby]

He is with the agency my son's funding is with.

When they met at the station that time which was toward the end of last year, the old support worker was with another client who my son said was in a wheelchair and they were all waiting for different trains that were going in opposite directions.

Over the last few weeks there have been several near-misses where my son may have met up with him and his client but didn't end up doing so. On these occasions when my son expressed his relief that he had avoided his old support worker, the current one said that he shouldn't worry about things that happened in the past and that nothing would have happened if they did meet up with him because he was a good man etc. etc.

It seems that the old support worker's current clients like doing the same sorts of activities and visiting the same sorts of places that my son does.

[Lara]

Just wondering if you have any ideas about what you're going to do about the situation...

Is there another support worker who is more neutral and open about discussing the problem?

[bilby]

Oh Lara ... what a shock that Billy Thorpe has left us :( He was always such a dynamo!

I don't think I can talk to the support workers any more than what I did the other day about this because I don't want to lose them because amazingly there are a LOT WORSE out there.

I will probably have to contact the Manager of the Agency now because I am thinking of mixing things up (changing things around) and may drop one day and have 3 days per week @ 4 hours instead of 4 days @ 3 hours per day. This way he would be able to go further afield and out of the range of where he is likely to run into that guy and also be able to do more varied activities. I suggested this possibility with my son and he seems ok with it re: the radical change in the status quo. I may also suggest he does some bus travel instead of train travel, which is consistent with broadening his experiences too. He has always had a train obsession and avoided buses. I would change back if I felt he found it too stressful though - bus drivers can be complete *****'s sometimes, whereas on trains you don't usually have to deal with that problem.

He's off today and tomorrow so I have some time up my sleeve to work this out before Friday.

[Isabelle]

Isabelle, sheesh, my kids would be lucky to have a MOM that fit that tall order.

LOL :D In reality is not a tall order when you love your child.

We are our children role models. So, for instance, if you lose your temper at.... something, anything and you see your child reacting same way to something similar, you quick learn that he is imitating you.

From MY OWN experience when my children were young I was a sergeant, when I saw my behaviour being repeated on my dd like a mirror, it stopped me on my tracks. I CHANGED red faced :o :o

Then I observed those teachers who were successful in connecting with my autistic boy and I learned from them.

A child, NT or autistic, learn from all of us. They are MIRRORS or monkeys.

I have seen excellent caregivers that didn't get angry with the disabled, didn't take personally their tantrums or "anxiety attacks". They were there to calm them down with soothing voices, which is far better than pills. Didn't make psychiatric disorders out of their behaviours. I have seen it all. Bad caregivers, good caregivers. Increased use of drugs to cover the lack of qualified personnel and because more money comes to them if described the autistic as "complex", "difficult", "dangerous" and so forth. And I am sure the manufacturers of drugs are not too far behind......

[bilby]

Yes I can attest to the calm and consisitent method working far better even going back to when my son spent 2 years at the autistic centre and regressed, yet improved more in the first 2 weeks at the local developmental unit than he had in the 2 years at the autistic centre, yet at the developmental unit there was a higher ratio of student to teacher and the teacher was under 5 feet tall and never raised her voice or restrained or barked out orders. I too learned a lot from her.

[tgrimes]

bilby -
Is there any way that your son might participate in a role play over this, so he can defend himself against a future similar situation? Suppose you told him you were going to act as one of the workers, and then you would interact nicely with him, but at some point turn and act as if you were talking about his 'file' with another person, and at that point he was to say, "I am right here, I can hear you talking about me"
If he is scared to risk role play of that situation even with you, then he will at least understand that he really needs to work through this somehow. If he says okay, then great, you need to show him how to do it without running under the couch. If he can do this at the train station... he will totally conquer it.
I think what he is afraid of here is a serious but common problem, it happens all the time with special needs teachers, I think they don't see any harm or capacity that it causes pain.
Even moms do this when they are discussing something about their child on the phone and the kid hears them and gets unnerved.
Anyway, I just feel your son is the one that needs to have the capacity to stop this occurrence right quick, and when he is empowered with that, he will not fear that worker anymore.
Does this make sense or is it way off track?

[milivica]

Bilby, I'm sorry I didn't post sooner, and I'm posting now recalling what I read originally when you posted...I really felt enraged, not just mad or something, that your son would have this forced upon him. For me at his age, that would have been a HUGE HUGE HUGE deal.

When his worker person is with him, he needs to be ON HIS SIDE, and if for instance, his worker or aide or what ever his title was to say run into his own mother on the street, and it made your son uncomfortable, he needs to talk to her later. He is being paid to be WITH your son, not with others, his FULL attention to the well being of your son is the only important thing - that is not to say others that your son would enjoy shouldn't be involved.

If I were your son at his age, I think would feel incredibly indescribably anxious at all times perseverating (even when I didn't look like I was thinking about it) at the future prospect looming over my head of my aide running into someone I did not like and gabbing with him with me stuck there and facing the prospect of that bad man trying to talk with me...I would feel my aide was being disloyal to me by liking someone over me that had been bad to me, and that would totally confuse me. Your son is not even asking he not like the guy, just don't hang out with him and talk. Also at your son's age I think I'd have felt that if you like that bad person AND me, you must like him INSTEAD OF me and he has tricked you and/or taken you away from me, again I have failed at being liked. I dunno if your son feels like that or thinks that, I just think anyone working with him should NOT put him in a position that is so uncomfortable for him. That's totally unreasonable. If your son has to talk and interact with that ex-support worker, then the current and ex-support worker should shove a cactus up their arses during the social interaction, then forgive and forget when the plant is removed.

Sorry but I just feel angry anyone would suggest your son should forgive and forget, when I am around a person that has done me wrong again and again, and see them accidentally (but don't even interact) I feel like I'm being emotionally molested cause I recall the bad feelings I had. And ya know what, folks that suggest others 'forgive and forget', well, if the shoe were on the other foot, I bet a zillion dollars there'd be no forgiving, no forgetting, and no forced social interactions.

[tgrimes]

Yeah, but then he just continues to have the rage when things are unfair. He needs control, right?

[tgrimes]

Mili -
Okay, I'm reading this again and wondering if you think he was upset that the workers were talking about him, or more because his key person for the day was unexpectedly 'stolen away' for a while and he was being ignored?
Which would make you feel worse?

[bilby]

mili - I think you've nailed very well how and what he's feeling and explained why. I'd say you're right too that he's been thinking of it even when I haven't even realised it. I think what will tip him over the edge is if they have a near-miss at the beginning of a community access outing (so far luckily it has been near the end and mostly at the very end just before being brought home).

I think grimesy (reminds me of that episode of the Simpsons) is on track too that it would be great if he could somehow have some better way of reacting than to walk away and hide. That must have been just awful that day. His heart must have been in his throat the whole long time ... waiting to see if they'd come after him and what they'd say to him if they did.

Even my stomach and whole abdomen has been tied up in knots lately with anger and frustration.

They say that anger is really fear and hurt.

[milivica]

Mili -
Okay, I'm reading this again and wondering if you think he was upset that the workers were talking about him, or more because his key person for the day was unexpectedly 'stolen away' for a while and he was being ignored?
Which would make you feel worse?

I'm having trouble separating the two since they were talking about him WHILE he was stolen away and being ignored. I would guess it was WHO took him away, or rather WHO his support worker WANTED or CHOSE to go to, an ex-abuser that was now posing as a good guy, whoooo, to top it off was saying MY NAME on his lips.

If I try to imagine myself at 21 in his position, I'd feel no matter what I was in a no win situation. I think leaving was a very appropriate action under the circumstances, to keep himself safe from hearing their words and from the feelings they would cause and so the betrayal he may have felt wouldn't be in his face. I don't like people talking about me at all even when it's positive, it feels 'exposing' or vunerable or something. Like it's ok to say "Ask Lisa about your fish, she'll probably know" but I don't like "Lisa's really good at building things", for some reason the first comment feels safe and the second feels like I'm exposed, like now there's some expectation of me that I'll screw up. I never too much though about it so don't know why. Vince too dislikes me talking about things that commonly would be considered just fine to talk about (he says it's private) yet he'll answer the door in his underpants or talk about the size of his huge turd to a stranger.

It's only been in about the last 10 years, I can 'handle' having a friend who also likes other people in front of me. Long ago, I felt like if you talked to or noticed anyone else in a positive way INSTEAD OF me, you were not a true blue friend, not loyal, and I just had no interest in the person anymore. Same if they were even one minute late to something we were supposed to do. And this was just friends, not guys. I had extreme expectations of people, because they were expectations I measured what a friend is by...you cannot manually measure what a friend is. It's a feeling that comes in time based on long term treatment of one another (or something like that). But, with no internal RDI type skills such as being able to share emotion, I had this sort of manual scale of what a 'real' friend would and wouldn't do. And I never ever broke those rules myself. If I was so lucky as to actually make a friend, and we were supposed to meet at say the park the following day, it was all I thought about till that time, probably would arrive a few hours early, and would be CRUSHED if they didn't arrive exactly on time or before. Arriving even a minute late was grounds for dumping the new friend with an explanation about tardiness, leaving the poor person probably totally confused and thinking I was just making that up and didn't like them for some other reason.

God that was long. Geez did I even answer you?

Bilby, again, I just feel so bad for your son dealing with that. Is there some 'polite' phrase you could arm him with, that he could repeat, so he feels he could shield himself from this guy with words? Like "I'd rather not talk today" or what ever people say that is polite AND renders the other person with no choice but to leave you alone. Something he can repeat if need be, no matter what the response. I hope you can find some way to make him feel armed or empowered to shield himself and be safe from the guy. Even if he could just 'play dumb' and keep repeating "How are you today" over and over no matter what the guy says. Imagine knowing you will face an emotional molestor from your past, that will try to engage you and others as if everything was okey dokee....what would you say? Tell your son to say that, explain it like how a chess game is played, it's a strategy...bad guy says 'hi' and that is his move, your son says "Bye!" with a big smile, the smile makes the bad guy confused and that is your son's move. Well your son has my heart on this one, hey, maybe he should try my strategy (although I swear I don't do it on purpose) just talk continually and nonstop no matter how hard others try to stop you :o .

[peglem]

Bilby, When you talk to the agency, can you avoid the debate over whether his feelings are reasonable or not? It seems like they just need to take at face value that he does feel this way and respect his feelings. As far as strategies for dealing with this- he expressed his feelings and desire to avoid this person, which for my child would be major enough. But, that should be enough and who he associates with should be up to him, just like it is to the rest of us.

[Lara]

Hi bilby,
Just wondering how things went for the rest of the week there.
Also just wanted to mention the weather system sitting off the coast. Hope you're reasonably prepared there in case of it coming south which is what some seem to be predicting. Tomorrow will tell us more.
OK, well I hope you all have a good weekend there and that this business with the worker is getting sorted out for your son.