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Neanderthal
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24 Apr 2014, 4:26 pm

Sorry, been consumed with work for a couple days. Trying not to get fired . . . . . . that would not be good right now. I am 57 years old and falling apart. :lol: Supporting the family would be difficult were I to get fired right now.

I had actually not looked at the Wiki article. Wiki is not usually my "go to" . . . . . I just do not have much faith in Wiki. :!:

Emoticons . . . . . Don't you just hate them?

In this case though, the article is excellent. To scroll down and see the "treatment" section was a treat. I am aware of all of those techniques, but have never seen them listed in one place.

Our therapist (again, a wonderful person who really seemed to care on a personal level) was working the "Stimulus Fading" technique. Though I seem to think she called it something else, but it escapes me now. Six months of "stimulus fading" and DS was regressing more and more. She would try to get DS comfortable with his sister, then "slide in". He was "on to her" immediately and in defense he would never get comfortable with his sister as he knew that the therapist would "slide in" at any moment. He completely defeated her attempts. I am all to familiar with how that (the defenses) works. I suppose he was "hostile" the entire time and we couldn't crack that shell. In addition, he dreaded the sessions. That was running his anxiety through the roof, effecting his sleep patterns and generally just ruining the lives of the entire family. So we pulled him out. Rats . . . . .

Interesting to see the "Mystery Motivators" spelled out like that. That was exactly how I got him to say "picks" but we did it electronically, sort of like the "Desensitization" section.

The only angle in the Wiki article that we have not worked is the "Self-Modeling" with the videotaped interviews. I can't imagine that we could successfully videotape DS as he is vehemently camera shy. But it is an interesting concept . . . . . . I suppose we could completely violate his trust in us and use a hidden camera. Sorta like we could search his laptop. We could easily do that, and I will admit I have peeked in a time or two. But we have never dug into his favorites or his history. I do not think it is right to do so. How dangerous is that . . . . .

Oh well, back to the thread, TCM, he has not shut down the Youtube account, but if he did he would certainly just open another one and keep it hidden. I have backed down, have not asked him about it for a couple days.

We are very accommodating with DS. Probably too much. His room is his castle. He has Christmas Lights hanging, he has lava lamps, art on the walls, his own recliner. We are welcome in his room, but shouldn't stay too long. If we (Mom or I) stay for more than a minute or two his anxiety kicks in and starts his hand wringing. We know when to back off. It is very clear. He eats when he wants, sleeps when he wants, plays Runescape (probably something else now) for hours. He can escape from the real world into his room, turn on a role playing game and literally become a god. In his gaming, he can rule the world. I have seen video capture of his play. Very confident, even arrogant. TF2 he is a sniper. Unbelievable skills. I believe I understand (just a little) how attractive that is, as in real life he can do none of that.

Ah, I am writing a book again . . . . . I do believe I benefit from writing all of this down, from interacting a bit with the community.

setai, thank you so much for your kind words.

Kortie, yes I have asked him why he shuts us out. No answer to be found. I am certain that he doesn't know the why any more than we do. It seems to be hardwired. But we have to keep trying. If he had the answer, the only person in the world that he could tell is his Sister. She is 20 yrs old (DS will be 19 next month). And she didn't ask for this, it is very unfair to Sister to have this ability to communicate. We encourage her to interact with DS to the point that she resents it at times. What I would give to be able to speak with DS. Speak with, as opposed to speak to. There is a wonderful person in there somewhere.

We ply her for information, but there does not seem to be anything useful in their conversations. He only speaks to her about his interests, asks her to play Melee so he can completely demolish her, that sort of stuff. But I will admit that it is wonderful to pause in front of his room and hear him speak with her so easily. No problems at all, vocabulary is probably better than mine. Pronunciation is spot on, sentence structure, very clear in his wording.

Lately he has been playing his guitar (on headphones, he wouldn't dare let us hear him) and recording some of his music. Working the MIDI controller. Sometime he slips up and leaves something on youtube that we can sometimes find. No musical savant, but it is so . . . . . . what is the word . . . . . wondrous to get those little glimpses into his world, into his mind. His art and his music are a reflection of himself. I treasure it much more than he does, and thus stalk him unrelentingly to download any art or music that I can find. We are very careful, and have never been "busted" downloading his stuff. I have all of it on the cloud somewhere where it will hopefully live forever.

My fingers hurt . . . . . .



Neanderthal
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24 Apr 2014, 4:55 pm

OK, I have known for a while now that DS has a tumblr account and he posts a "Song of the Day". Today's song:

https://www.youtube.com/watch?v=XyHXV0g2kM4

I swear when I first heard the instruments that it was an original, that it was his work. This is EXACTLY what I have been able to hear when I can crack into his music. But no, it is a big deal metal band. Conan? I never heard of them.

My point though is that he could have very well been the artist. This is the sort of stuff he does. A little glimpse into his mind . . . . . and his talent. I will admit that his work is not quite up to that level. Edit: I listened to it again . . . . and DS"s stuff is every bit as good.. Though I can't say that I feel that that work is "good"! ! Where is Jimmy Page or Eddie Van Halen these days?????

Anyhoo, my heart stopped for a minute until I got to the vocals. He does not do vocals. And then researched the link to find that it is Conan.

I am sharing the youtube, not his Tumblr. Don't want to go violating his privacy . . . . . .



Last edited by Neanderthal on 25 Apr 2014, 6:50 am, edited 2 times in total.

kraftiekortie
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24 Apr 2014, 4:57 pm

I'm sorry you're going through this stress. Are you in danger of being fired because you have to spend time with your son? What do you do for employment, if you don't mind me asking.



Neanderthal
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24 Apr 2014, 5:22 pm

Nah, not really family related at all. I am a mechanical engineer.
See my username? I chose that for a reason.
I am in danger of getting fired because I am getting run over by 25 year old engineers with 3-D solid modeling skills. Takes years to learn that stuff and I am just to old to get my head around it.
None of them young SOBs can weld a frame or bend a tube but they can draw pretty pictures. P*****s me off.
Actually I think I am already fired, they just haven't told me yet.
Where is my red stapler ??????



kraftiekortie
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24 Apr 2014, 5:33 pm

LOL...Sorry about that...I hope I didn't upset you. I thought "Neanderthal" meant that you were interested in Early Man. "Neanderthal Man" was one of our first cousins.

I know what you mean. It's a bummer, this technology. It doesn't take into account practical things. I also believe in actually creating things using my own two hands, rather than just be a good, fancy 3D artist. How long have you been with the company?

I have a nephew (on my wife's side) who has a Master's in Mechanical Engineering.

Your red stapler is on the ladder over to your left LOL



trollcatman
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24 Apr 2014, 6:49 pm

Neanderthal wrote:
We ply her for information, but there does not seem to be anything useful in their conversations. He only speaks to her about his interests, asks her to play Melee so he can completely demolish her, that sort of stuff. But I will admit that it is wonderful to pause in front of his room and hear him speak with her so easily. No problems at all, vocabulary is probably better than mine. Pronunciation is spot on, sentence structure, very clear in his wording.


I think he can talk to his sister because he knows it will be a "safe" conversation. She can't order him around like a parent could. He probably feels more confident because of that. Same how he talked when you were installing Team Fortress, in that conversation he knew he was the more knowledgeable person in that area.
It seems that he is too smart now to "trick" him into talking. How much does he know of his own diagnosis? Perhaps you could let him or his sister read the wiki article. Perhaps he does not understand himself why he is not talking.



Neanderthal
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11 Jun 2014, 6:42 am

Couple of months have passed, and a bit of progress. Sort of a long story, but it is relevant in the end.
DS is progressing in his music. He broke a guitar string, so I picked up a set of Ernie Ball stainless strings (researched a bit and found these to be of good quality). We (I) strung up his guitar and everyone is happy. A bit of time goes by and he lets Mom know that he wants a different type of string. Mom gets the link (through DD) and I do some research to find that these particular strings are special for "Drop D Tuning". Wow. Just Wow! I dig a bit of research to find that drop D tuning is something that metal players use so that the first two strings are an automatic power chord. Drops the pitch of the entire instrument. I am so impressed I just about fell on the floor.
It gets better. The little amp that came with his guitar blew up. On the rare occasion he will play out loud with his Sister. Very rarely he will do that and we can hear his work just a bit. Anyway, we want him to have an amp, so I look around and find a buddy of mine has a Fender 100 watt solid state with all sorts of knobs and two 10" speakers. Top of the line, almost professional stuff. Not cheap either. So we get that working and everyone is happy. Big amp, magic strings, I am very proud and happy.
Out of the blue, he mentions to Sister that there is an amp he wants. Really? . . . . I thought we were good on the amp
OK, let me see if I can work this. I ask him to send me a link, AND HE DOES!!. Sent me a link on his Google plus account. Happy dance!! !
I research the amp he wants and bingo, I am again impressed. It is an "Orange" amp out of Texas that is special for the type of music. It is not solid state, but of the old tube design.
Again, he is progressed in his knowledge and understanding of his music to a degree that I am in envy of.
And he sent me a link!! I can't even express how significant that is, though if you have followed this journey I suspect that it is somewhat understood.
Big picture, a small step. But a step nonetheless and something I hope to build on.
:)
Thal



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11 Jun 2014, 7:00 am

That's great! It sounds like his music is the opening you wanted.



thirteenboats
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12 Jun 2014, 5:25 pm

Does your son know that there are people online his age that also have selective mutism? Tumblr specifically has, not necessarily a community of selectively mute people, but the biggest online presence of SM people I have found. This would have been huge for me when I was a teen (I also have SM). Although... at the height of my social anxiety I avoided all types of social networking, even anonymous options.

I put myself in your son's place and I go back to that time in my life where my need for privacy was absolute (some people describe their SM as a fear of being known) .Throughout your posts you have admited to occasionally snooping through you son's things, or crossing boudaries your son has tried to establish, I guess all in an effort to connect. Unfortunately, with SM, this is counterproductive. It tends to only make our anxiety spike, and to make us paranoid and feel unsafe.

I think something you can do for him is make him aware that he can connect with others that are like him, and hopefully this will encourage him to take the reigns of his own mental health. Only he will probably need to feel absolutely sure he is in complete control of the kind of information he makes available about himself at all times (I used to dislike hearing myself even spoken of). This would mean giving him the option of opening up to others but not to you until he feels safe doing so. (So no snooping through blogs/online accounts).

I don't know if you are already aware of this but the more important someone is to a person with SM the less likely we are to be able to communicate with them, so don't be discouraged or think that he will never open up to you, it just has to be on his own time.



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13 Jun 2014, 9:27 am

DW_a_mom wrote:
Neanderthal wrote:

DW, I can recall many instances that I wish I could get a "do over", that I got short with the son, etc. These instances have haunted me, and I am sure that similar demons plague every other parent of an autistic child.


Yes. So many things that everyone tells you "it's nothing," or, "they can handle it," and so on ... and you learn that no, for your unique child it really was a major thing. The sensory issues pervade so much of it, I've learned. And, yes, it rarely is one thing. It's a huge build up. I SAW it happening with my son right before we got his diagnosis; he was literally starting to turn off parts of himself in self-defense to life. We were lucky that the process stopped, we can never be 100% sure why, but it is one of the things that pains me when I see the big divide in the autistic community, and the belief that a high functioning child like mine can't have the same condition as a lower functioning one. I often wonder if so many of these things "trip" in the way allergies do: too much exposure to something the body has difficulty handling, and it starts to react extremely. Someone recently showed me some research that shows this same idea. That doesn't mean we could have done anything to prevent the process, I actually rather doubt there is, but I think there is a lot to learn from understanding how it all happens.

I really hope you find a way to turn the cycle on this one with your child.


DW...I can't follow what you were saying here but it sounds important. Could you possibly explain it in a different way? I would really like to get it.



Neanderthal
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13 Jun 2014, 3:08 pm

Quote:
I put myself in your son's place and I go back to that time in my life where my need for privacy was absolute (some people describe their SM as a fear of being known) .Throughout your posts you have admitted to occasionally snooping through you son's things, or crossing boundaries your son has tried to establish, I guess all in an effort to connect. Unfortunately, with SM, this is counterproductive. It tends to only make our anxiety spike, and to make us paranoid and feel unsafe.


13boats, first post and I am thankful to have seen it. I have had no communication with anyone who is SM, nor any parent of an SM child. Thank you for your insights.

The snooping that I do is part of being a parent. I do not want to have DS surfing the internet without having some idea of what he is looking for or looking at. And I do not mean porn, that is a concern, but probably the least concern. Although DS is technically an adult, now at 19 years of age. More to the point, the hate groups, the insanity that is the internet. Just read the papers. How many horrible things happen to or were committed by misguided youth with unlimited internet access. The shooting comes to mind. That particular one (the shooting) scared the hell out of me. The suicides come to mind. I want, I need to know if DS is treading into dangerous waters.

I am exquisitely aware of the boundaries that I am crossing, and the consequences if I am found out. So far no problem, I have not been "busted". I am willing to take that chance.

And thankfully, I have found nothing that alarms me. DS is a good kid, has a good heart and I feel no threat either to or from DS.

DS was for a time active on Tumblr, was for a time active on Deviant Art. His Deviant Art page was magnificent, with some of his art on the front page, some of his music playing. The background was appropriately foreboding and spooky/haunting. Just beautiful. He had a custom cursor set up as a very small "Grunt" from one of his video games. Attention to detail was off the charts.

Once done, he seemed to lose interest and let it fall into disrepair. Some of the links were broken, when I asked about it he pulled it down. Shame on me for asking . . . . .

He had several communications from the DA community but never replied to anyone that I could determine. His SM seems to prohibit him from communicating with anyone electronically as well as verbally. And to your point, these people were of no importance, that should not be a factor in this case, though I do not disagree with your premise.

His Tumblr account is/was similar, he was posting a "Song of the Day" for awhile. I reference it a page or two back. His last post on Tumblr was "I am leaving Tumblr" and poof he was gone. Unless he has an account that I am unaware of, he really is gone.

To your point though, I will indeed have that conversation with DS, to make sure that he is aware that there are people with similar challenges that are just a click away. Thank you for that, I would have never thought of it in those terms.

Right now DS is wanting/needing a USB microphone. I asked him to pick one out and send me a link. I am still waiting for that communication. I feel I have a 60/40 chance.

Thal



Neanderthal
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10 Jul 2014, 6:30 am

An update. I have had some success with private messaging through Google Plus.

DS did indeed send me a link to the microphone that he wanted. A nice one, and we got it a few days ago. Alas, it would not work (its complicated, something about confusing the drivers) so we returned it. Since, he has lost interest in the Mic and we have not replaced it.

So, taking the cue from 13boats, I went out on a limb and sent DS a link to a Tumblr page concerning SM. I have to accept how extremely risky this is, as DS could so very easily sever the route of contact. Forever. But I accepted the risk and sent him the link. No good though. When I ask him if he clicked it, he says no. When I press a bit . . . . he says no a bit more vehemently. I back off. I do explain that I am only trying to help him understand more about himself. Nope, doesn't want to hear it, feels threatened maybe, I don't know why he is resistance. But he is having no part of it.

Good news though is that I did not destroy the bridge. DS wants a bass guitar and he again sent me a link to the one he wants. Yay!

Side note, the instrument is an entry level Fender. I tried to get him to spend just a bit more money for an intermediate level instrument (Mexican Fender) but he would have no part of it. He seems to be careful with money.

So, I have a tenuous line of communication, so far completely on his terms only. No verbiage, just links so far to "things" he wants for his music.

Of course, I am trying to build on it but must be so very careful that I don't push too hard and lose it.

Yesterday DS had a good day. He had a good attitude all day, played some music with his sister. Went on the front porch and they played flutes! Sort of a joyous noise, not really music. Capped it off spending an hour playing TF2, again with his sister.

Days like this are increasingly rare, as DS is usually moody and reclusive. But now and then a ray of sunshine!



kraftiekortie
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10 Jul 2014, 7:10 pm

I'm glad you weren't fired.



Adamantium
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10 Jul 2014, 8:23 pm

Seconded! Congrats on remaining a provider. And on the ray of sunshine.



Neanderthal
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10 Jul 2014, 9:27 pm

kraftiekortie wrote:
I'm glad you weren't fired.


I appreciate the well wishes, but yep, I got fired. Ten days ago and I am still quite freaked out. 8O

I was in a no win situation, absentee owners that have zero appreciation for the contributions over the last twelve years. What have you done for me lately sort of thing.

Poor pitiful me . . . . . ah, I was self employed the first thirty years of me life. We will be fine.

DS had a pedal malfunction with his guitar stuff this morning, and we had an "almost" conversation about how to fix it. Really, I am starting to think that we are doing a little bit better. I was able to show him how to change the battery, and he stayed interested until we got it going again. Pretty cool.

I will keep these updates going from time to time. Thank you guys for following along.

Bass will be here Saturday! I am so glad he has taken an interest in music. Maybe I will actually hear some of his stuff someday! :)

Thal



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10 Jul 2014, 9:42 pm

That means you've invested wisely. Kudos to you!