Forest meet trees

[slsh]

Sorry I've not be around much - trying to orchestrate hospital discharge, medication changes, medication followup, tracking down lab results, and desperately to get thank you into Residential Treatment Center (RTC) and our options are running out. I've been a faxing fool and an emotional puddle, LOL. On a positive note, I finally got Residential Treatment Center (RTC) #3 and it's affiliated hospital to acknowledge that their "HIPAA requirements" of thank you's signature before releasing info is in fact a violation of state law, and therefore a violation of HIPAA. Small victories.

Having obtained records from Residential Treatment Center (RTC) #3, I was a bit shocked to read psychiatric evaluation from 4/2007. Mad at myself for not requesting it then, reading it then. In no way, shape, or form is current placement appropriate and that is evident from reading report.

But about the forest - I guess I had kind of forgotten that my son is *severely* disabled. I mean, he's got some very serious problems in terms of coping skills and thought processes.

Those trees - the daily grind with him. husband and I have gotten so caught up in the day to day stuff - hygiene, school, AWOLs, etc - that I think we really lost sight of how these relatively little issues really are not a matter of simple defiance. They are part of the big picture and are totally tied into his underlying illness.

That's not to give him a pass on it at all. He still needs to do these things. But we have to help him learn to do it in the framework of his thought processes, which is tricky.

The most amazing (and I think right on) section stated essentially that thank you's outward appearance of being able to cope with normal daily stresses is a facade. He needs more time and energy to understand information in his environment but even with that, his effort will be too inefficient to process everything so he focuses on 1 or 2 bits of information. Anything involving emotions completely flips him out.

And all this is on a purely emotional basis because cognitively, while scores are scattered, he is at worst "average" with some spikes into very advanced skills.

Just wanted to share my contemplative thoughts this morning. I don't know why I'm surprised at these reports. These have been issues forever. He speaks so well and presents so well, that you would expect him to get from point A to point B without a problem. But the basic problem is that he cannot do it and it's not purely volitional. It's just so doggone hard to remember that when you're talking about brushing teeth, you know?

 

[tiredmommy]

Sue,

Your post sends shivers up my spine as the parent of a highly adaptable difficult child. She "passes" as a easy child for lack of a better word because all seems good on the surface. Scratch the surface and POW! You can start to immediately see her struggles.

I hope you and husband (and thank you's team) can help him understand A to B, hygiene and connect the dots. These are sorts of things are the frame work to a more normal life.

 

[Fran]

slsh, we were told when difficult child was 15 that his challenges were 2 fold.
If difficult child met you,due to relatively high level of articulation and vocabulary, he will be judged as more capable than he really is. He hides his disability well.

If he is assessed purely on evaluations, he would be thought to be unable to function. He said that we suffer the danger of overestimating difficult child and underestimating difficult child. It's difficult to keep things balanced.

I don't know about you but I am so sick and tired of hygiene conversations I could just scream. I saw difficult child on Friday. I asked why his hair wasn't combed? He lost his brush. So for 3 months he hasn't brushed his hair!!!!! So my question is "what do you do about a lost brush?". He knows the answer but didn't know how to initiate the question. Add that he doesn't really care and you have a young man who looks ratty.

It sounds like you suffer some similar issues with thank you.

 

[house of cards]

"That's not to give him a pass on it at all. He still needs to do these things. But we have to help him learn to do it in the framework of his thought processes, which is tricky."


Boy did that hit home with me.

 

['Chelle]

Your post gave me a bit of a lightbulb moment thinking about my difficult child. He's fine, witty, articulate as long as everything goes along on an even level. Talking with him you wouldn't think he had any problems, adults actually enjoy talking to him one on one, he can converse quite well. I think then people expect a lot from him, even I think I start to expect things from him. However, add any kind of stress or change into it and he has problems going from A to B, and that's when meltdowns happen.

It's a tricky balance between expectations and capability in difficult children.

 

[everywoman]

And is just isn't fair, somehow----my difficult child looks and talks like he is fully functioning----until you get below the surface---and then you know that somehow the neurons just aren't clicking somewhere in that brain of his. It just makes me so sad....

 

[Star*]

Slsh,

So when you figure out HOW to convince a group of people in a court of law (PO, PD, DA) and allow them conversations WITH your son and he is so well versed, articulate etc. And then you throw in his pre-GED test scores (forget the test name) and he scores a 2nd grade math level, an 8th grade English level), list all his hospitalizations, medicines, interventions, placements, and they still tell you he is JUST DOING THIS BECAUSE HE CAN CHANGE - there is nothing wrong with him and now the PO says "It's all in your head, I know crazy you are not crazy."

I just want to jump up on a conference table - pull my pants down, shake my fanny, swing from the lights, make monkey noises, itch my armpits, bounce up and down a few times, have a banana, and then pully my pants up, crawl down off the table and then say "WHAT? - I have no problems it's all in YOUR head. oh and ps. I KNOW crazy -:crazy1: and he qualifies."

Care for a banana? Cause I can't seem to make anyone understand our position with Dude EITHER. Besides - I love bananas.

But when you figure out a better way - let me know - will ya?

Hugs -
(had you thought about therapeutic foster care?) probably have.

 

[Fran]

slsh, if you get an opportunity to get the book "Thorn In My Pocket" Go to Chapter 9. Temple Grandin's mother actually says "they can't see the forest for the trees". It's a very good chapter for getting a handle on what happened and why our kids snowball as they age.

 

[slsh]

Yep, hygiene is killing me. I think part of my frustration is if he runs out of cigarettes he can carry through and go to the store. But if he runs out of toothpaste or loses his toothbrush, he's utterly clueless about what to do with that. The thought of picking up toothpaste with his (illegal) cigarettes is completely alien to him. Being negative Nelly, I picture him someday in an apartment (hopefully), not paying the electric bill, and spending his days literally as well as figuratively in the dark because I honestly don't think he would connect the dots enough to solve the problem. I used to think if he couldn't internalize this stuff, maybe we could just train him to "get it", do stuff by rote. That's been a bust too so far.

He's so afraid of failure that he fails before he even tries - somehow, that lessens the disappointment for him. It's completely out of the realm of possibility in his mind that he might actually succeed at something. It's heartbreaking, really.

Star - psychiatric reports and a lot of highlighting pens. Underline every statement ever made as to difficult child's emotional disabilities, his faulty reasoning and impaired reality testing.

 

[Wiped Out]

Sue,
This post really hit home with me even though my difficult child is so much younger. Last year when we visited with the neuro-psychiatric. after he finished difficult child's evaluation. he said difficult child's relative strength is his vocabulary. He said it was a good bad thing. People will expect more of him than he is capable.

My difficult child is really bad with the hygiene thing now> I shudder to think where he will be in a few years.

 

[Loving Abbey 2]

Thanks for posting this...I really needed to be reminded of this!!

And what is the deal with hygiene?!?! OF all the things they refuse to do or forget to do, it's has to be hygiene!!

 

[Hound dog]

He speaks so well and presents so well, that you would expect him to get from point A to point B without a problem. But the basic problem is that he cannot do it and it's not purely volitional. It's just so doggone hard to remember that when you're talking about brushing teeth, you know?

Sums up life with Travis in a nutshell.

He's going to be 22 and I still have to stop once in a while to remind myself of this simple fact of life.

((hugs))

 

[Marguerite]

I've been having conversations with difficult child 3's correspondence teachers about the problems he is having in some subjects, trying to make the social leap towards 'normality'. He simply can't do some of the more subtle tasks they want from him. In English he can define every word in the text he is given, but ask him to explain what the entire passage means and he's totally lost.

He seems very bright. In some subjects (the more concrete scientific ones), he is. But it's a facade. So many people see the high-functioning and think "high functioning = not very autistic at all". But in fact, the level of functioning can be independent of the degree of autism. You can have a profoundly handicapped Aspie with a worse prognosis than a mildly affected full autistic.

On the Pervasive Developmental Disorder (PDD) scale, difficult child 3 scores moderate. And yet he can do a number of tasks better than his Aspie older brother, who scores as mild.

I think difficult child 3 summed it up best back when he was 8 and he said, "I'm getting better at pretending to be normal."

He's now 6 years older and he's brilliant at it. But it doesn't MAKE him normal.

Marg

 

[nvts]

But about the forest - I guess I had kind of forgotten that my son is *severely* disabled. I mean, he's got some very serious problems in terms of coping skills and thought processes.

Those trees - the daily grind with him. husband and I have gotten so caught up in the day to day stuff - hygiene, school, AWOLs, etc - that I think we really lost sight of how these relatively little issues really are not a matter of simple defiance. They are part of the big picture and are totally tied into his underlying illness.

That's not to give him a pass on it at all. He still needs to do these things. But we have to help him learn to do it in the framework of his thought processes, which is tricky.

The most amazing (and I think right on) section stated essentially that thank you's outward appearance of being able to cope with normal daily stresses is a facade. He needs more time and energy to understand information in his environment but even with that, his effort will be too inefficient to process everything so he focuses on 1 or 2 bits of information. Anything involving emotions completely flips him out.

And all this is on a purely emotional basis because cognitively, while scores are scattered, he is at worst "average" with some spikes into very advanced skills.

Just wanted to share my contemplative thoughts this morning. I don't know why I'm surprised at these reports. These have been issues forever. He speaks so well and presents so well, that you would expect him to get from point A to point B without a problem. But the basic problem is that he cannot do it and it's not purely volitional. It's just so doggone hard to remember that when you're talking about brushing teeth, you know?

Hi! I know that you know waaaaay more than me, but I swear to all that is good and holy, these sound so much like aspie/autistic tendencies. I don't know, but most of us with kids with AS deal with their way of thinking which is to not follow the point A to B to C to D method. They kind of go C,A,B and who care's if I get to D! Toothbrushing, straight clothes, etc. just aren't important.

Sorry if I'm overstepping, but your descriptions made me smile because I see pieces of my difficult child 1 and 2 in the thank you continuum!

Beth

 

[slsh]

Beth,

You're not overstepping at all. I've thought for years there's a component of Pervasive Developmental Disorder (PDD) in here somewhere. Bipolar has just been as good as we're going to get because he's missing some of the diagnostic criteria of AS/Aspergers, particularly the social skills. The very best fit I've ever found was multiplex developmental disorder, which unfortunately is only a research category. But it sure fits my kid to a tee.

 

[trinityroyal]

I've thought for years there's a component of Pervasive Developmental Disorder (PDD) in here somewhere. Bipolar has just been as good as we're going to get because he's missing some of the diagnostic criteria of AS/Aspergers, particularly the social skills. The very best fit I've ever found was multiplex developmental disorder, which unfortunately is only a research category. But it sure fits my kid to a tee.

Sue, it sounds like you're describing my difficult child. He is an aspie, but according to the forensic psychiatrist that we've just started working with, he also scores high for mania and depression and more than likely falls somewhere in the bipolar realm as well. (Poor difficult child. Sigh.)

Like so many of our children, my difficult child speaks and presents very well at first, but he's completely incapable of functioning independently because so many pieces are missing. husband and I have come to the realization that he will likely need 24/7 support for the rest of his life.

difficult child IS capable of doing so many things for himself. When I really started to analyze what he can do vs. what he can't, it all boils down to seeking pleasure and avoiding grief. Nothing else matters to him. Loss of privileges, rewards, consequences...none of it matters. Only pleasure and pain.

So, we have been working with psychiatrist, therapist and Residential Treatment Center (RTC) to reframe all of his therapeutic goals along those lines.

For example:
difficult child likes his own stinkiness, so he doesn't wash for days on end. The last time I was at his Residential Treatment Center (RTC), his whole unit smelled like it had dead bodies in it. This was from difficult child's BO. He had nasty skin growths caused from filth and we had to throw away some of his clothes that were unsalvageable because of the smell. We arranged with his Residential Treatment Center (RTC) to schedule a bath in hot water and bubble bath every day. difficult child started sitting very still in the water, so as not to get clean and lose the stink. So now, the Residential Treatment Center (RTC) staff go in with him and watch him bathe. If that doesn't work, they will wash him. In this case, we have made the grief for not bathing so high that it outweighs the pleasure he gets from being stinky.

We are working through every one of his maladaptive behaviours along these lines. It's brutal hard work, but it seems like the only way to make it make sense to him.

 

[KTMom91]

So many of these posts sound like Miss KT. She is so great at passing for normal, so people look at me like I'm the problem (my mother included), but her logic is so bizarre that I wonder how she will function on her own.

 

[Marguerite]

Trinityroyal, you said, "...we had to throw away some of his clothes that were unsalvageable because of the smell"

Unless the clothes are also rotting (we've had that) you don't need to throw them away because of the smell. We've developed a technique that works. I've written about it here before, but we are currently using it A LOT, with both difficult children very stinky at times and both sharing the same room.

What you do - our kids are told to put their dirty clothes in the laundry. I sometimes (often) have to chase them up to make them do it. When clothes are really stinky, the kids are told to put vinegar on them, especially on the stinky parts. We used to splash it on, we now have a spray bottle full of vinegar, that is kept in the laundry. Nothing flash - the cheapest, most industrial-grade generic vinegar you can find is best. It doesn't matter if it dries on the clothes, the vinegar is still there.

Then if necessary, you pre-soak the clothes. NOT hot water or you will 'fix' the smell in the clothes. Nothing hotter than hand-warm. If it's really bad, repeat the vinegar and pre-soak.

Then cold wash. Not hot. If necessary, wash again.

Another important rule - don't wash difficult child stinky clothes with anybody else's. Change his bed and wash his clothes with his bedding. If necessary, soak the lot in vinegar first, then pre-soak.

Hey, the worst that will happen is the fabric will fall apart. And if you were going to throw the stuff away anyhow, what does it matter? At least you stand a chance of not having to buy new stuff to replace what you threw away.

I stumbled on this technique years ago when I was playing Prince Charming in a local pantomime. The drama club properties person gave me a black dinner jacket, previously worn in a play about an escaped bushranger. The bloke who had worn the jacket was a heavy chain smoker who never washed and never wore deodorant. His role had required a lot of running around in an Aussie summer under hot lights, then lighting several dozen cigarettes while he waited offstage for his next run past. I visited the man's house once and I'm not kidding, you could barely see the far wall of their living room, through the pall of smoke. The walls were streaked yellow with nicotine.

The properties person handed me the coat on the end of a stick, said "Get it cleaned if you want, we'll pay for cleaning. But if they say they can't clean it, or you feel that you can't wear it even after they've had a go, we'll understand and happily buy a new jacket."
I chose not to send it to the dry cleaners because with the chemicals they use, so often a stain or smell gets permanently trapped instead of cleaned out. I figured if they were going to throw the coat away anyhow, I may as well experiment.

We made an interesting couple of discoveries:

1) It worked. I had to change the pre-soak three times and wash it twice, but it worked. Absolutely no trace of a smell (no BO, no stale cigarettes), other than a fresh clean sunshine smell from drying on the clothes line.

2) The coat actually wasn't black, it was dove grey. The colour of the rinse water was unbelievably revolting. Then the props person found old photos which proved - yes, the coat WAS dove grey originally.

For most clothes if you do this semi-regularly, you won't need repeat treatments each wash. Once will be enough.

easy child 2/difficult child 2 has taken this treatment further - BF2's car wass delivered to us by his parents. It smelt badly. Cigarettes plus BO. So easy child 2/difficult child 2 has spent the last two years slowly deodorising the car - she sprays vinegar around it, she cleans every bit she can reach, she's soaked the ash trays in vinegar, and the car now has lost its smell (apart from her ultra-sensitive nose). It lost the BO long ago, the cigarette smell took longer, perhaps because you can't put an entire car's contents through a washing machine.

Vinegar works because it starts to chemically break down the molecules causing the smell. it breaks down protein chains and kills the bacteria associated with the smells.

Marg

 

[trinityroyal]

Marg, thanks so much for that information. I am going to pass this on to the Residential Treatment Center (RTC) and get them to incorporate it into difficult child's program. He is responsible for his own laundry so this will help with the natural consequences of not washing his body.

The clothes we ditched were unbelievably stinky, but they were also chewed through the neck, scribbled on with permanent marker and ball-point pen, etc. I stopped replacing difficult child's torn and stained clothes a while ago, because he persists in chewing and drawing on them, but in combination with the smell, I just couldn't cope.

Great advice. Thank you.