my rant about the TSS worker

[Sharon74]

It is so nice to be able to complain to someone who understands. . . . .

Anyway - We recently started using a BSC and a TSS worker (about 6 weeks.) The BSC is fantastic. She has been making me aware of behaviors that I haven't even taken notice of in years. She is very non-judgemental and great with DS. She is constantly putting choices for his behavior back on him. He actually responds well to her.

The TSS worker is another story. She is new at this. Finished her training with my son. I did mention to the agency that I did not think it was a good idea to give my son a new TSS worker but they seemed to think differently. It seems that she thinks her job is to play games with my son on her phone. Last week I had told him that he needed to pick up his three items from the livingroom minutes before she arrived. She came in and started playing games with him. I reminded him that I he needed to pick up and put away the three items and she said it could wait until they were done. Needless to say . . . it wasn't done. I should have stood firm but did not want to cause problems.

I am done feeling that way.

DS needed to start working on an assignment for school that is due this Friday. When the TSS worker arrived I cut her off when she attempted to engage DS in a game. He was not happy and refused to do the work. The usual nonsense - "I have until Friday, I don't know how to write, I don't understand it, this is stupid", etc. I attempted to get him to do the work by asking him questions that should have gotten him on the right track. (By the way, he is an honor roll student. There really isn't any excuse for this other than a behavioral issue.) The TSS worker just sat there and pretty much did nothing other than make a couple of comments that were not helpful.

After about an hour I had enough. I told him that since he was chosing to not do the assignment he could go brush his teeth and go to bed. He then needed a drink. I told him he could have some water after brushing his teeth, but the brushing would occur first. Then he was hungry - sorry. Then he decided he wanted to do the assignment after all - sorry, time to brush your teeth. I had to practically push him up the steps to get to the bathroom so he could slam the door in my face.

The TSS worker just couldn't believe he would act like that. (Why does she think he qualifies for services, because I don't know how to play games with him???) She just couldn't understand what had gotten into him. I tried to explain that this is him - not every day but often enough.

I am done with her. I am going to call the agency tomorrow and tell them that I will just keep the BSC and drop the TSS. What exactly are they supposed to do anyway? This is my first experience with a TSS worker and while she is very nice, this seems like a waste of our time.

Anyway, I just wanted to vent! Thanks for reading.

 

[Marguerite]

Surely there must be some way to educate her to do what needs to be done? She is anoter pair of hands, after all.

Please tell me - what specifically is a TSS worker? Things work differently here in Australia, it might help me understand better and I might be able to suggest some alternative actions.

Your son sounds a lot like mine - you can't push im to do stuff, you need to led him instead. We're still working on a lot of things but I've found ways that work for us a lot better.

I do agree with you - when any worker arrives, they need to insert at the right point, not just walk in and begin immediately. There needs to be a handover and a completion of previous tasks.

Task-changing for our kids is a huge issue, she needs to learn that this has to be done properly in order to help him learn how to transition appropriately. And I agree with you - if you had set a task and it only needed a few minutes to complete it, she should wait. Perhaps set a limit of five minutes.

A few things you've described, I think you can help with. But you need everybody on board supporting you and working with you.

The biggest thing - at the moment, you're in the driving seat saying, "this will be done now." And he is digging in his heels.

There is a better way and a more effective way. But the first and most important step - get into his head and work out the REAL reasons why he's refusing, at that minute and in that situation. It does change.

The biggest problem is the task-changing issue. To stop doing A in order to begin B is a bigger challenge for these kids. It needs time, it needs coaxing (not pushing) and often what works best, is for you to work alongside him, at least while transitioning.

For example, you want him to pick up three things. So say to him, "I want you to pick up three things. When will you be ready to do this?"
He needs to be reasonable in his response - if he is playing a computer game and doesn't want to leave it, this is understandable but not acceptable (long-term). BUT he does need to be allowed to get to a logical pause point. Once he is reassured that you aren't saying, "stop playing the game permanently NOW," you will get better compliance.
So what you're aiming for in his response - "I'm not quite ready yet, but if I can get this character to the next level I'll be able to leave it for a few minutes. Is that OK?"

Generally a Pervasive Developmental Disorder (PDD) kid who is gaming/concentrating on something/not wanting to be disturbed can sound terse. Do not mistake this for insolence. These kids often sound rude or insolent but don't mean it tat way. It's a facet of teir poor social skills, and if you react with hostility, all you are doing is demonstrating to him how to be hostile.

The next step - "Are you ready to pick up three thigns? Ok, I will help. If I also pick up three things, then between us there will be six things picked up."
If TSS worker shows up early, then she can pick up three things too. That will make 9 things.

With the homework - you need to work out why he is reluctant. having been there so often, a large part of the time the problem is that the task feels too big, at the beginning stage. They feel anxious and the fastest way to ease that anxiety is avoidance. Your job is to help reduce the anxiety and help him get started. The best way to do this is to sit with him and show him how tobreak up the task. I posted in detail on someone else's thread in the last day or so, explaining how I did this with easy child 2/difficult child 2 about ten days ago. She was getting hysterical, aggro and unreasonable about acollege assisgnment, using every argument to justify avoidance. She has even used her level of agitaiton (self-induced) to say, "I'm too upset now to begin work on it." But this is self-replicating and she has to learn to face the fear and not let it grow and get bigger.
What I did with easy child 2/difficult child 2 (because she was at her place, not here - she's a married woman now) was I said to her, "Right now, neither of us know anything about this topic. I will call you back in half an hour. In that time, you do your research online and I will do my research. In half an hour we will talk over the phone and discuss what we have found."

The result - she started, knowing that I was helping (even from a distance). And once she started, she found it wasn't so scary. Simply making a start got her into that direction and she was able to continue. When we talked as agreed, she was already halfway through the work. She's very bright, very capable, but very anxious.

But if I had simply said, "You've got to do it, don't be silly, don't put it off because you will run out of time, you always do," she never would have got started and would have ended up screaming at me. Even more upset, nothing achieved.

And having done the job without too much initial distress, the next time she gets a similar class assignment she will remember that technique, and know it can be done.

Work with the child, support him rather than push. And know that task-changing is a problem, anxiety is a problem, getting started is a problem. Lead, don't push. become his helper, not his obstacle.

I didn't work this all out by myself. I had help. This site, plus the constant advice to read "The Explosive Child" by Ross Greene. It took me a while but as soon as I began reading it, difficult child 3's behaviour began to improve. And I didn't think I had begun to do anything! In reality, what was happening was difficult child 3 sensing a different attitude from me, and he began to respond positively, very quickly. It's not a cure, but it certainly has made our lives much easier.

If you feel you need a TSS worker with a backbone, then make te change. But if there is a chance you could engage this person to work with you as a team and to transition more appropriateely, then you would have made a double victory:

1) You would have a more effective TSS worker; and

2) when the TSS worker goes to other clients, she will be better informed, better trained and more compassionate. She might even pass this on to other workers in her circle of associates.

Let us know how things are going. Do a sig when you can, so we can quickly pick up on your family dynamics without you having to re-type them every time.

Welcome!

Marg

 

[mstang67chic]

When I first read this post I agreed...get rid of her. The more I thought about it though...I wonder if she's trying to build up a relationship first. I'm not saying I think that's what she's definately doing but....wondering.

I would call the office, talk to the supervisor and ask what she is specifically supposed to be doing. Don't say it in an exapserated manner, more of a curious "what kind of things are difficult child and TSS to work on together" type of way. If the supervisor asks why you are asking, simply mention the game playing and ask if that's part of the program. I'm betting it's not but I think you'll get a better response with an innocent tone than a frustrated one. Know what I mean??

Generally though, if TSS is something to improve difficult child's life (I'm not familiar with TSS either) I would give it a good try before getting rid of it. But if it's giving double coverage to an area that really doesn't need that much attention, I would look into other programs or assists.

 

[Sharon74]

Thanks so much for your replies. A TSS worker is a Theraputic Support Staff worker. They work in conjunction with a Behavior Specialist Consultant. The BSC makes up a treatment plan and the TSS worker is supposed to carry out activities that should assist DS is reaching his goals as addressed in the plan.

I think I skipped some info in an effort to make the post shorter. When DS was told he would have to pick the three items up in the livingroom it was not all of a sudden. We had talked about it during dinner and he was in agreement that he would do this. Having the TSS worker arrive is what threw him off.

Same thing happened last night. DS was aware that he would have to work on his essay as we had talked about it the night before, during breakfast that morning, on the way home from aftercare, and again during dinner. Once again, he was thrown off when the TSS worker arrived.

You are right Margurite, having an extra set of hands should be useful, but thus far it has not been. She has been coming for 6 weeks so I think I stuck it out for a bit. She is not doing the things that are in the treatment plan. She is supposed to work with DS on learning figurative language and slang. Not that we want him to be speaking slang, but the BSC stated that he is not understanding all of group conversations when he is with his friends. (He is a very lucky in that he has friends, we would like to help him keep them.) She is supposed to help him self calming and coping techniques. She is supposed to help him with transitioning. There are a few things, I don't have the packet in my hand at the moment.

I have spoken with the BSC and she said that she can continue to come even if I don't keep the TSS worker. The supervisor called me today after talking to the BSC and offered another TSS worker. I told him that I would rather just work with the BSC for now. He said that if I change my mind they could try another TSS worker. When he asked what the specific problem was I told him that this was my first experience with a TSS worker and that I was still not sure exactly what they were suppoed to do and that I wasn't sure that the TSS worker knew either.

I think that if I change my mind I will tell them that I would try another TSS worker if two conditions could be met. 1 - The TSS worker must have experience with children like DS and 2 - The TSS worker must be a male. Problem is DS is highly intelligent and he had her figured out by the third visit. I also think he would do better with a male.

Perhaps I did sort of lose my temper by the time I sent DS up to brush his teeth, but I didn't let is show. I am sure DS knew though, he can read me. When the controlled calm voice and the stiff body comes out he knows he got to me so he needs to see how much further he can push it. All I can say is I wish he knew how lucky he is to have me for a mother. I don't know that someone else would be able to deal with it all the time.

I usually have to sit back and think after these things happen. He is so over it already. You would never know there was a problem last night by looking at him. He woke up nice as could be this morning. Was very cooperative all morning. Went to school and aftercare. He remembered to bring his reading book home today (after forgetting it all week). He did the whole essay assignment during aftercare. He is now out playing with his friends. (I guess I am too soft. He should be punished I guess, but I hate to rock the boat when he is behaving.)

 

[klmno]

I think you are going about all this in a good, sensible way. I like your conditions for the next TSS worker, should you decide to try it again. And I think you did a good thing by letting him play with friends today. For one, our difficult child's need rewards shortly after doing well and it sounds like he did very well today, and secondly, it helps meet one of your goals for helping him keep friends. He proabaly ffelt good about himself today and was happy so he probably had a good, healthy visit.

 

[Marguerite]

PUnishment doesn't work as a rule, especially if it is not absolutely immediate. Yes, he is highly intelligent, but he is very immediate, I'm guessing.

ANd I know it looks like he's trying to manipulate you, but generally that are not. Not in any ways we understand manipulation to be.

Give as much praise as is appropriate and make it unconditional. We often forget to praise, it really works well with these kids.

Good example: "You got your essay done, you worked on it solidly and it's finished. Well done! Doesn't it feel good to know you can play, and that task is finished?"
(OK, a bit risky to try to link it with how good it feels, but it's not quite conditional).

Bad example: "You got your essay done, you worked on it solidly and it's finished. Well done! It was so much easier this way, wasn't it a shame you had to argue about me with it last night?"

The bad example is really pushing home that YOU were right about the argument, and he was wrong. This devalues any praise and alsao make him feel bad again, at a point when he should be enjoying feeling good about getting the work done. He needs to associated success in these tasks with feeling good, not with any bad feelings in there at all, or he will become even more resistant.

When handlnig these kids it should never become a battle between the Forces of Evil (the difficult child) and the Forces of Good (us). It sends a really bad message ono too many fronts.

Instead, we need to help the child use this stubbbornness that they are capable of, as a tool to push themselves.

This is a very different way of handlinng these kids but the advantage is, it can help you skip a few stages. It is what these kids can do (especially the bright ones) and they will still ned help with what they can't. The risk is, that people aorund you, or you yourself, can make assumptions about what the child is capable of, when in fact he simply can't do it all yet.
Example: last year difficult child 3 was studying English (he's had a break this year; it begins in earnest in February). His English teacher is a very smart lady but knows SFA about autism and difficult child 3 especially. Our method of schooling for difficult child 3 is primarily one on one. I requested some lessons for difficult child 3, thinking thta if she worked with him face to face, she would learn to understand him. But she still set questions like, "In this text, what did Jake assume Bob was thinking?"
Now, this is complex theory of mind stuff, a classic diagnostic difference betwwe "normal" people and those with autism. difficult child 3 is learning to overcome theory of mind problems, he can demonstrate now that he does have some level of theory of mind, but it has taken a great deal longer and doesn't come easy. His instinctive response to the question ther English teacher asked, is to say what HE thinks about what Bob thought. Or even what he thought about the situaiton. He would miss that added layer effect to the question.
And this is all to do with social maturity, a problem for people on the spectrum. They do get there but not to the same extent and not in the same time-frame as other people.

There are a lot of misconceptions about autism. perhaps the biggets misconception is tat people with autism don't feel emotions. IN fact, they feel very much indeed, sometimes they feel things even more strongly. Certainly their feelnigs hurt them a grat deal, they can seem over-sensitive.
BUT - they often don't display these feelings in ways we recognise or understand.

A child with a deadpan face can seem scary. You wonder, what is going on in that head? But the child doesn't always show their feelings on their face or with body language. Or maybe the child is smiling and it seems inappropriate to the situaiton (say, at a funeral). But the grief of other people at a funeral can sometimes work the other way, and trigger a public outpouring of gried or maybe a very public tantrum (a desperate "get me out ofhere!" plea).
We took difficult child 3 (four years ago) on holiday to Port Arthur, a famous convict penal settlement from Australia's early colonial history. It is a beautiful place, now. But it has a terrible history. difficult child 3 was not able to understand tat history, but he had picked up a 'vibe" about the place and from the moment we walked in the gate to the moment we left, he was begging us to take him away from there "because something bad is gonig to happen." It was even scaring us - we were wondering if he had picked up on the more recent history of the gunman on a rampage there and hunting people down in cold blood. We had never told him and although there is a discreet memorial, the gunman's name is never mentioned in that area. But difficult child 3 gets anxious for many reasons. He couldn't tell us why he was in a panic, all we could do was keep reassuring him. Next day easy child 2/difficult child 2 wanted to go back there, difficult child 3 was very unhappy for her to go back there and didn't even want to come with us into the car park to drop her off there. We spent the day in a zoo a few miles up the road. He was content there but worried about his sister.

These kids are different in how their brains function and in how they learn. You mention that your son needs to learn figurative language and slang - did he have any language delay when younger? Because that can have a long-term effect on their language in subtle ways. difficult child 3 had significant language delay (in Australia that means an autism diagnosis and not Asperger's, as a rule) and although he now has a vocabulary in the superior range (including figurative language and slang!) he will always have problems with word retrieval and speech dysfluency.

The rason for this, is that when most people are laying down the feramework of language, they are young enough for milions of brain patheays to be readily laid down. By the time someone with language delay gets the knack of communication, they are older and the brain less malleable. Fewer cross-connections are made for each word.

Example: think of the word "apple". What other words and ideas come into your mind? You think of apple tree, apple pie (how they feel, taste, smell), how apples grow, the different kinds of apples, buying apples, tinned apple, and so on. Someone with language delay has to consciously think through these pathways. It takes more mental effort.

These kids are worknig at a much higher mental level, for much longer. It's no wonder they get mentally fatigued and can lose self-control when stressed.

Something that we did to help language development (and build pathways) - we got the hand-held "20Q" game. There's also a tabletop version, also a website. What this does, it is puts in the brain cross-connection betwwn ideas related to a concept. You think of an obsject (or concept) and let the electronic gadget 'guess' what you are thinking of. It is purely a product of programming and electronics, there is nothing eerie about it, although it can seem so. It really does seem like it's reading your mind! But it has helped difficult child 3's language development a great deal. I strongly recommend tem as a fun toy anyway, but a useful tool for any therapist trying to work with someone with language delay. Especially someone who is a good reader. difficult child 3 was a very early reader (hyperlexic). He was reading fluently at 2 years of age. He just didn't understand what he was reading, and was still mostly non-verbal.

Do try to get your hands on "The Explosive Child". I thought I was doing the best I could, I was very reluctant to learn anything else or to read any more books because my head felt overloaded already, and wasn't I already doing all I could?

What I found, though, was a change in mindset in me that suddenly made a lot of my efforts either not needed (the stuff where I was banging my head against a brick wall) or much more productive. And even more amazing, he began to improve, where previously we'd seemed to make horribly slow progress.

My energy levels improved, difficult child 3 became nicer to know (maybe because I was also nicer to know, from his point of view) and it rapidly improved all round from there.

It sounds like your concerns about the TSS were shared by the supervisor.

See how things go with your new system, it may be less disruptive.

Marg

 

[Sharon74]

Thank you Marguerite. I never really looked at it quite that way. I often feel that DS is manipulating me, but perhaps he is not.

When he told me that he completed the assignment I did say something about it would have been easier if he had just done it last night. After reading your post I agree that I shouldn't have handled it that way. I am not sure that I was trying to tell him that I was right, more like I was just trying to make him see that it wasn't worth all of the fighting last night.

DS did not have a language delay, but he did have articulation problems. I was told that this was due to the chronic ear infections he had as a baby. He also stuttered for about a year. Not sure that is related to his problems as my daughter has been stuttering for about a year now and the onset was at about the same age as it was for my DS. DS just stopped as suddenly as he had started. daughter seems to be hanging on to it for a bit longer. However, figurative language and slang have been a problem for as long as I can remember with him. I especially understand what you are saying about the reading lessons. My DS could read fairly well by age three, so I am very frustrated to find that reading is now his worst subject. It seems to get worse each year and I have explained to the school that I believe it is because he is expected to pick up on things that are implied instead of written out. Luckily, the school is wonderful. The reading teacher has been working with DS on this and it seems to be helping. They are also considering testing him for a reading disability even though he is still testing in the proficient range based on what I have told them.

I understood that DS felt emotion much more than he showed emotion long before I had any idea he was "different" from other babies. I just didn't know why. His expression never really "fit" how he was feeling.

I have gradually over the years been adjusting my mindset, but as you know, it is hard. It is even harder when you rarely talk to other parents with similar situations. I did at one time have my hands on "The Explosive Child" but don't know what happened to it. I have tried to more carefully pick my battles, but I get worn down too. I have also found "The Out of Sync Child" to be very helpful. DS responds very well to deep pressure touch when he is upset.

Thank you so much. Reading your post really has helped me to put things more into perspective, especially when I was starting to feel like things were getting out of control.

He always manages to surprise me. He had such a great day today, not one problem at all. I always try to remember these days. The days when you wouldn't be able to pick him out of the crowd. After all, that is how DS wants it to be.

 

[Marguerite]

Unconditional love really helps. Unconditional praise too, even when you're itching to make a lesson out of it- trust me, over time the connection will happen. Often with the really bright kids, those connections are made TOO fast.
Example - we go to the beach. Sometimes I go to the shop afterwards to buy milk (don't buy it before the beach or the milk will curdle in the hot car). ONE day, difficult child 3 asked for an ice cream and although I mostly say no, once I said yes.
Next time and every time after that I go to the shop after the beach - difficult child 3 expects an ice cream.
Every. Flamin'. Time.

Your son sounds like he had some speech problems, but language problems are different. A childwe know was developing normally until a near-drowning accident which left him with cerebral palsy. He lost all speech. He also lost his English (he was bilningual, Spanish/English). As he recovered he began to regain his English skills but doctors assessing him in hospital hadn't realised that he was bilingual, they were asking him to do things in English and his failure to respond, they saw as a sign of severe intellectual damage. In fact, he is fine intellectually.
He still isn't speaking, but is fluent on a computer. He's still bilingual.

difficult child 3 was developing at the same time. In a lot of ways he was more unresponsive than this recovering child. YOu could talk to this child and he would make good eye contact and try to follow your instructions. He would laugh at jokes or a funny face pulled. But difficult child 3 was not as responsive.

When it comes to analysing text for school (a comprehension exercise, for example) difficult child 3 would look for key words to help guide him to the answer. All kids do, but as they get older and these exercises beome more challenging and more subtle, key word searches don't help.

What the child needs now, is one-to-one coaching in finding the hidden meaning. Don't let anyone treat him like a dummy, make it clear to him that it's not his fault.

I hate to blow my own trumpet here, but the best example I can give you is difficult child 3 and his interview. The story was about autism research from an Aussie perspective, but also giving some idea of autism. difficult child 3 was the only high-functioning autistic personally interviewed. They asked him some very curly questions and his answers were from himself, nothing I had ever told him. Although I have gone to lengths to make sure my kids don't see their autism as a defect or a bad thing.

I've posted elsewhere about the interview - there is a link to that story online.
OK, I dug it out
http://au.tv.yahoo.com/sunday-night/video/
and look for "autism solution". I just spotted a link to transcripts, I hadn't seen that before.

I wasn't able to explain to difficult child 3 about his autism when he was diangosed, because his language skills were too poor. He was 8 when I was able to finally instruct him. The school set up a Sixth Sense program (which was brilliant). But meanwhile, I had explained it to difficult child 3 in computer terminology (since he has been using computers since infancy).
I explained to difficult child 3 that if we show someone a printout of a text file, we simply can't tell if the document was written on a Mac or on a easy child. But the computer language and instructions to the computer to actually do the task, will be very different depending on whether you used a Mac or a easy child. And some people have mac brains while oters have easy child brains. No computer type is necessarily better than another, they do different tasks better perhaps but overall, they are all very useful computers. Macs may be the computer of choice for publishers and graphics people while PCs are great for business. Both computer types can do the oter tasks too, however.

In the same way, people are all different and have different skills. The challenge in someone with Pervasive Developmental Disorder (PDD) in any form (I include asperger's and Pervasive Developmental Disorder (PDD)-not otherwise specified as well as autism) is to find the way that THAT person's brain especially learns best with.

I was very pleased with difficult child 3's answer to "How do you feel about being autistic?" He described something he feels he can do, that other people can't.

Similarly, Temple Grandin has said that if she were told that she could wake up tomorrow and no longer have autism, she wouldn't want it. She values the gifts it has given her and will winllnigly put up with the problems.

We have some very distinctive moments in our family, because of the autism. difficult child 3 had some very unusual ways of expressing himself - as a young child he had the car window down but closed it as the car began to speed up. He said, "The wind is poking my eyes."

Or the time both boys were watching our new front-loader washing machine. They were stting on the floor in the laundry, eyes locked onto the window in the washing machine, heads tilting this way and that, over and over. difficult child 1 said, without changing position or stopping, "I don't know why but I find this strangely compelling."

OK, it's not normal, but it;s our life. You can't (and shouldn't) try to turn an autistic person into a normal person, but you can equip them to live in a normal world, and to adapt. But inside - they will always be autistic, always be who they were born to be. They need to know we love them as they are. It makes it easier for them to be who we want them to be.

Marg

 

[Sharon74]

Thanks again Marguerite. I will check out your difficult children interview as soon as I can. It's been a hectic day for me. Not for DS though, he is still doing great today. He even handled a problem with an adult at aftercare and handled it very well.

Well, he goes to his dads tomorrow for the weekend. This is going to make Sunday night, Monday, and some of Tuesday very hard on me (and DS). But when DS returns home I am going to really try and stick to your advice and see if he can bounce back sooner.