Strange and awkward

[Echolette]

difficult child is in a "trying" mode. I too am in "trying" mode. I am trying to not get overly optimistic about his trying. We have been here before. I try to step back and let him manage things, he falls on his face and squirms on his belly for a while, I refuse to help because "he has to hit rock bottom", right? then he lifts his head and tries one little thing, and I rush in like a tidal wave with "help" (I'm big on the quotation marks tonight) and I wash him and his little tiny effort right out to sea.

But I stopped doing all that a year ago. And started being OK with the stopping doing all that in December, when he was in jail and I found you all.

So this time is new.

He has a job delivering food for a take out place...on a bicycle because he never got his driver's license. Bicycle is presumabley stolen.....but I digress.

He has had the job about a month, that is long for him.

He got himself a case worker. And tomorrow he has a psychiatric intake for outpatient services. Which he scheduled for himself.

And here is where the title of my thread comes in...he called and said, mom, what are my diagnoses?

Oh, difficult child, where to begin.

To be clear, he has heard all of them before, we have not hidden anything. In general he doesn't like to hear that he has Pervasive Developmental Disorder (PDD), and doesn't accept that he has either high functioning autism or schizoaffective disorder. And I, frankly, don't think he fits any exact disorder and lack faith in the long string of diagnoses assigned to him...and yet...there is clearly something neurologically or psychologically wrong with him...

so here we go.

Well, difficult child, you carry a diagnosis of Pervasive Developmental Disorder (PDD) (deep breath, rush in before he can object) and honey, you WERE delayed..you talked late and had delayed fine motor. We know this. So that is probably a fair diagnosis (also we have autism in the family)

And slow processing.

And ADD

Your IQ is high normal.

And bipolar disorder, later changed to schizoaffective. Here he says what??? I never had hallucinations. And I said...you thought you had a whole conversation with the commanding officer at your military academy the day they threw you out, but you were never in his office, you went straight to the infirmary where I picked you up. to which he replied...thats weird.

And I said..and tell them about carrying the axe around lower Manhatten, and getting committed to Bellevue for 6 weeks right before super storm sandy. and he laughed.

And last, I said, you have a performance score of 55.

What is that? he said. and I said...it is a measure of your ability to live on your own and support yourself.

I forget to mention substance abuse, and adjustment disorder...

Anyway, it was an awkward conversation. It is never that comfortable to try to label or summarize difficult child.

It also reminds me in an uncomfortable way how little we or the medical or social structure understand or can help him.

I'll let you know if he follows up with either psychiatrist or case worker.

Echo

 

[Childofmine]

Echo, I am so glad to hear an update from you about what is going on in your life. I hope you had a good trip. I saw one post where I believe you said the trip was mixed. I hope the getaway part was good for you, at the least.

I think we must celebrate any trying that occurs. Theirs to get a handle on their lives, and ours to keep on living ours instead of theirs.

It's okay to be hopeful,Echo. At a distance, for self-protection. I hope your difficult child finds some answers and can take yet another step forward in his life, whatever that looks like.

My difficult child sent me a text on Monday saying he "thinks he has a job." I waited a while, thinking, and then just wrote, congratulations. He wrote back saying, don't get so excited mom, I don't have it yet. I didn't respond.

Maybe this is a step forward for him. I don't know. I am continuing to keep my distance. That is best for me right now.

I actually have greatly relaxed (for some strange reason, and writing that, it is scary). I am continuing to let it go and I am finding that with infrequent, short contact, I can work better at letting go of the judgment that I bring to his situation.

I really want to just accept. what. is. With no expectations, no waiting for the other shoe to drop, no nothing.

The harsh cynic in me says, well, it's going on 60 days. He usually can't go beyond 60 days without getting arrested again. Tick, tock.

The eternal optimist in me says, he's really, actually trying to get a job. Maybe he will. Maybe because we have all stopped, finally, at the same time, he can do something on his own.

The still emerging new-me says, just let it go. It will either work or it won't. Nothing you can do or will do will influence it anyway. He's going on 25. Let him be 25.

I am sure that conversation with him took a toll. I think it is very positive that he called to ask and you did your best to tell him the truth.

Are you reading Living with Uncertainty by Pema Chodron? Very, very good.

Hugs and a good night's sleep to you tonight. Hang in there.

 

[BusynMember]

Echo...what you have told us in your post gives me a real insight into your son's inability to move on.

Echo, if he is on the spectrum, he should be getting disability and help, especially if he has just a 55 IQ in performance level IQ. That is in the mentally challenged range. Even if his verbal IQ is high, performance level, I have found, is more important in life and in the working world.

I can't imagine him being able to hold a normal job without a job coach or other support. My own Autism Spectrum Disorders (ASD) son is way above that in performance IQ. I also want to explain to you that I have a Non Verbal Learning Disability, which is a lot like autism. I have a verbal IQ around 120 and a performance level IQ of 85. That means I always have trouble performing any job, even easy ones. On top of that, I have visual processing AND auditory processing processing problems so I can't learn by listening to directions (they make no sense to me) or by watching (I have zilch ability to remember anything visual). This is common on the spectrum as are additional learning challenges. This would explain why your boy is having such a struggle. I don't think he can do this himself. He really does need to decide to cooperate and get tested for any supports he can qualify for, in my opinion.

By the way, Pervasive Developmental Disorder (PDD) alone is not a diagnosis. Was he Pervasive Developmental Disorder (PDD)-not otherwise specified? That's a moderate form of autism. My son was diagnosed with that because he was delayed in speech and other areas. I can't imagine Sonic being able to figure out how to navigate the world on his own, although he is doing a brave job, but he has a lot of supports too. Adults with autism think differently than typical adults and often have a very hard time figuring out even simple things. They also tend to have impulse control problems. I am the payee of my son or he'd take his money every time he got paid and blow it all on videogames and movies and other fun stuff and he is twenty-one almost! He has a caseworker, job supports, and is going to qualify for housing. His school IEP was very helpful for when he transferred into the adult world. We knew he'd have problems that were NOT due to his personality or stubbornness or anything other than his disability and, to his credit, he tries really hard. But I don't think he could do it all without the supports he has. He feels good about himself because he is set up to succeed and has far exceeded expectations of him when he was young. We were very "on" his autism. And his was more mild so one could kind of pooh-pooh that he had it. But we read up on it and joined an autism group (I'm big on support groups) and we saw how obvious it was that he had it. Life would be very hard for him without the help he's gotten and continues to get (he becomes more and more capable as he learns). Now Sonic has no mental health issues to cloud things and your son does. Maybe he really can't do it himself. So now what?

Well, if it were me, I would offer to help him get supports and disability and offer to be his guardian, which I am over Sonic. That way he won't feel so frantic, if he feels frantic, about trying to figure out a confusing world. Now...and this is a BIG now...if he refuses to admit he has disabilities that impact his functioning and won't get supports, you are back to Square One. It is, ultimately, his decision to acknowledge his difficulties and to agree to be compliant getting supports and following their rules. Doesn't matter what your label is. You have to comply or you can't get helped. Much of your son's troubles may be neurological, but he still has to agree to get the help that is out there for him. And getting disability can take five or ten tries, but he can't give up. My son, because of his IEP and school agreement, kind of just slid into disability and all the supports after he graduated. He is a very happy young man who does 85% of everything by himself, but he'd slip by the wayside if he didn't have help for that other 15% DUE TO HIS NEUROLOGICAL ISSUES.

Not everyone can be independent.

Downs Syndrome kids...would we expect somebody with Downs to leave home, get a job, go to school, find a place to stay on his own, etc? Nope. Well, this isn't that different. However, can a Downs adult refuse aid and help and end up homeless and struggling and on drugs? You bet.

But we can all "see" Downs Syndrome. Mental health issues and autistic spectrum disorder are both invisible disabilities. So sometimes people suffering with one or both do not get help as nobody sees the wheelchair, if ya get what I mean.

I got married just before turning twenty, Echo, because my parents were ready to toss me out and I knew I couldn't make it out there on my own and I have many of the issues your son struggles with. It was a lousy marriage, but it kept me off the streets and I had the chance to get therapy and work hard and try to figure out what was wrong (many things were and are) and worked my tail off to improve. I never did have an easy time keeping a job and often took jobs that were for high schoolers or the illiterate because I could not do two things at once (multi-task) and would get fired from higher level jobs. Don't feel sorry for me. I figured it out and don't feel badly about me anymore. But I am now feeling a connection to your son...that maybe, if he is willing, there is a way you can actually advocate to help him help himself. In the end, I had to find my own treatment options and I had to agree to follow them. I still do.

Total tough love is for the able bodied and those who refuse treatment for their problems, in my opinion. It is also my opinion that there is nothing wrong with stepping in to guide a slightly disabled child toward help and supports, as long as he is compliant, not abusive, and quits the drugs because that will only make matters worse. I feel for you. You have a lot on your plate and I'm feeling empathy for your situation.Your son does not use drugs, does he? That's one less issue, if so!!!!

I am sad for your hurting mommy heart and hope your son is in a frame of mind to accept that he may be one of those people who may need a little help in life, even as an adult. And I hope he is willing to accept it. That's always the big "IF" factor. If he will not, there is nothing you can do.

Gentle hugs. I wish you both the very best. In no way am I trying to tell you what to do. Your post just made me very contemplative and I posted my thoughts...sort of like a free association psychiatric visit. You are a great mom.

 

[Scent of Cedar *]

nyway, it was an awkward conversation. It is never that comfortable to try to label or summarize difficult child.

Oh, Echo! How hard this must have been for your son to hear. My heart aches and rages for every one of us who has been labeled with these strange sounding, terrifying "nature of the disease of this living being" instead of our own names, instead of being known for who we are in our hearts.

You were so brave, Echo, to speak those true words to your child, to stand for him and comfort him through what must have felt like an assault.

I am sorry for your pain, Echo. Pain for ourselves that this happened, at all, and oh, to hear the pain in the acceptance of it for our child....

I have been talking with difficult child daughter about the changed way she is perceived, now that she has psychiatric diagnosis labels affixed to her name, glaring out at her through her medical record forever.

She isn't anything anymore, Echo. A series of diagnoses, a person to be judged and found wanting.

difficult child daughter was told by a nurse practitioner that if she didn't want to have brain damage, why then, she shouldn't let people hit her in the head.

This actually happened.

I can't even believe it.

I am going to find some interesting new information regarding this whole psychiatric diagnosis thing.

I will be back.

:O)

Cedar

 

[Scent of Cedar *]

www.ted.com/talks/eleanor_longden_the_voices_in_my_head

blog.ted.com/2013/08/08/treating-the-diagnosis-rather-than-the-individual-a-numerical-look-at-the-increase-of-disc

Cedar

 

[Albatross]

Oh do I understand that trying to step back thing you are talking about!

I don't know much about anything related to diagnoses, other than to heartily agree that the neat lines of a diagnosis rarely relate to real humans in real life.

But I do think it is great that he scheduled his own intake and wants to go in somewhat prepared. I hope he follows through!

 

[Echolette]

My difficult child sent me a text on Monday saying he "thinks he has a job." I waited a while, thinking, and then just wrote, congratulations. He wrote back saying, don't get so excited mom, I don't have it yet. I didn't respond.

Child, this made me laugh...because it is so exactly what my easy child 15 year old son would do! I swear they set us up to irritate them, then they jump on us, all irritated. You were set up! There was absolutely no right answer to that...but it did make me laugh, and laughing is good, so thank you.

Are you reading Living with Uncertainty by Pema Chodron? Very, very good.

No, the only book I have read of hers is "when things fall apart". I found it a very helpful adjunct to all the books by Thich Nhat Hahn I like to read...I have never found a voice that speaks to me as clearly as does his, but hers is close. I will try Living with Uncertainty too, thank you!

Now...and this is a BIG now...if he refuses to admit he has disabilities that impact his functioning and won't get supports, you are back to Square One. It is, ultimately, his decision to acknowledge his difficulties and to agree to be compliant getting supports and following their rules. Doesn't matter what your label is. You have to comply or you can't get helped.

Bingo! MWM, thank you for that incredibly thoughtful, detailed post. You sound like you have a lot of the same issues as difficult child (NonVerbal Learning Disorder (NVLD), auditory processing too). He does have disability, and I did arrange for him to be in a job readiness program for high functioning autistic people (PPD not otherwise specified, yes), and he went to his junior year in high school at a school for same. He also had IEPs from 4th grade on (spent 5th grade in a school for kids with learning differences that didn't quite match his needs).

So unfortunately the issue is his insistance on not taking his medications (the lithium ability combo does wonders for him, and even lithium alone helps a lot and seems to have few side effects for him...he has been on a lot of medications and is very medication sensitive, so I was thrilled with his response to lithium when they started him on it after a brief hospitalization in a state psychiatric hospital last summer.

But....I have no rights or control over him. His doctors won't speak to me without his permission, which he doesn't give anymore. He refuses to take his medications. He does not go to therapy, and he lost his caseworkers (which took me almost a year to get for him) by skipping appointments..they have to see him once a month or drop him from their roles. So yes, disabled. Yes he would benefit from help. Yes I would help him IFFFF.....he would take his medications check in with a caseworker and see a therapist at least sometimes.

So you are wrong on that one point, but the rest of your post is extremely well taken, and I really appreciate it.

She isn't anything anymore, Echo. A series of diagnoses, a person to be judged and found wanting.

Yes, I see that with difficult child too. He himself, the person, is lost now, at least when in the system. There is no David there anymore, only patient PDDNOSADDBPDSBD. You know.

But I do think it is great that he scheduled his own intake and wants to go in somewhat prepared. I hope he follows through!

Well he didn't. But that is OK. Sometimes it takes him a few weeks to get where he is going. Sometimes he never gets there. Even last night he prefaced it with "if I can get up early enough" so I knew he was preparing an out.

My real worry now is that longer days seem to stimulate manic episodes for him. His twin and I both suffer seriously and notably from seasonal affective disorder, and have to fight off real darkness in the winter (I use full spectrum lights, she uses antidepressants and moved to the southwest)...he doesn't have that so much, but I think the opposite...he has had some impressive flame outs in the spring, so I am hoping he gets himself back on medications before that happens...even he has said he knows that is an issue.

Thank you all for reading and for commenting. It is always nice to have your company on this somewhat lonely journey.

Echo

 

[Echolette]

Your son does not use drugs, does he?

and mwm....ah, but he does use drugs. I think he uses them as a smoke screen...it is much cooler to be a heroin addict than it is to be a "retard", right? He would rather get admitted for an overdose than get fired from a job he can't handle. 'And he does get very stressed about jobs..he is best as something like an offhours dishwasher, no time pressure. I also think it is a way for him to medicate his own anxiety. And last...the people who are drunk stoned tripping or nodding don't look at him funny when he stands too close or talks too loud or uses his hands weirdly...he doesn't feel criticized in that society. But yes, he uses drugs, and he participates in the cycle of selling drugs too..as the phone contact or the look out or any of a variety of things. So there is that as well.

That is the framework where we can't have him have access to our homes (my ex's or mine) anymore. Because his Pervasive Developmental Disorder (PDD)/not otherwise specified makes him clueless about who is a friend and who is not, and he trusts EVERYBODY. Because his drug use has opened doors to people way creepier and more manipulative than he can imagine. Because his grandiosity in the midst of a bipolar mania will lead him to empty our house of all our goods and head off to Sacramento where the woman he thinks is his girlfirend but who tells me she absolutely is not lives. Because in a schizoaffective state of paranoia he carried an ax around lower Manhatten and scared tourists. Because he won't take his medications or see a therapist or stay hooked into a caseworker or even sleep in my house for more than a night or two. Because jail seems like a good option to him when it is cold. Because all that.

Please do NOT think the frustration in this is at you! I love and appreciate your insight, especially coming through the life and genes and neurobiology you have. I feel like you are a bit of a window to difficult child, and I appreciate your generosity and bravery in offering that to me. The frustration is at me, at difficult child, at the world in which I can't tuck him in and make him safe.

Echo

 

[BusynMember]

Hi there. I never took it as an attack against me. It's just that I had sort of an "aha" moment when you said Pervasive Developmental Disorder (PDD)-not otherwise specified and performance level IQ. And many people who are different and struggle DO take drugs and, yes, they are more accepted when they do. I used to want people to think I didn't try in school. I wanted to be known as the girl who doesn't try rather than the girl who can't get it. A good deal of my younger years were spent wondering what the hello was wrong with me and why couldn't I do the same things everyone else did easily every single day. My step up above your son, the only one, is that I was terrified to make things worse by taking drugs or even drinking alcohol so I did neither. I still did not feel like I was the same as everyone else, especially when I'd get fired from easy jobs like McDonalds and as a file clerk or when I could not recognize the face of my next door neighbor if I saw her at some mall because I had very poor visual recollection abilities (and still do), but I did not use anything to make me even dippier (my word for myself). I was good verbally and enjoyed animals and young kids and I still do so I did pretty well, in my opinion, as a mom and pet owner. But I wasn't an organized mom. My hubbies (both) had to do that for me. And I did not remember dates and times well. Again, both had to do that for me. I was not a great housekeeper because I lack the ability to visualize how a house should look so I'd be holding a towel and wondering where it should go and trying to fold it (I have trouble folding things) then stuff wherever it fit. If I had to write a book about my life, I would title it "Confused." I was always confused. Sonic, my Autism Spectrum Disorders (ASD) son, is much more on the ball than I was and am and I think that early intervention was critical and his supports now are invaluable, although he doesn't need that many of them that much of the time.

Having said all that, which was kind of my own type of therapeutic vent at how difficult I found life, your son will not improve in any way if 1/he does not acknowledge that he is different, 2/he does not accept help for why he is different and 3/he won't quit using drugs. I would say #3 has to happen first. You can't do anything if he won't stop. I agree that, as he is right now, he can not live with you. Even disabled adults have to help themselves. Nobody else can do it for them. In every way, I think you are doing what is best for yourselves and your son.

It always puzzled me when people who had differences, such as autism or mental illness, refused to acknowledge the differences, even though it was clear as the day is bright and long that they struggle and would do better with help. Certainly nobody ASKS to be different and more needy, but you have to work with the cards you are dealt. In our family, Sonic is fine with getting services and does his best all the time in every area of life. 36 thinks he is normal, or says he thinks so, except for his anxiety disorder. Uh-huh. Guess what? He isn't doing as well as somebody as bright as he is should be doing and he has totally failed at controlling his temper and anger issues. To get better, you have to admit you need to get better.

I'm glad you posted. I hope for better things in the near future for you and your son.

Thinking of you....

 

[Albatross]

Echo and MWM, I have not thought seen these things that clearly before, about how so much of the self-destructive behavior is rooted in a preemptive strike and why they seem so determined sometimes to create a problem with no solution. How sad for them to be so young with so little sense of belonging.

It confounds me to no end how my difficult child would flat out refuse to take any psychiatric medications because they were "unnatural" but he would drink a pint of vodka or swallow a few unidentifiable mushrooms without a second thought. There's no social life in psychiatric medications, at least not if they are used as prescribed. I guess feeling better isn't enough, really. And to get what they do want is a long, slow climb that they often aren't willing to make. So frustrating. I don't know how to help them break that cycle, just that if they don't want to there is nothing we can do.

Anyway, there sure are a great and perceptive bunch of moms posting on this forum. Thanks for your insights.

 

[Echolette]

If I had to write a book about my life, I would title it "Confused."

I love that.

Once difficult child told me he was going to train-hop to Florida (this is an ongoing plan of his...he is going to train hop somewhere. Wut??? as my teenagers would say? ) I asked why Florida, and he said 'because there are more people like me there'. And I said what do you mean? And he said, 'you know, people who aren't all there'

that haunts me.

 

[Echolette]

There's no social life in psychiatric medications, at least not if they are used as prescribed.

That is true, I hadn't thought of that. What I have thought is that..if he takes his medications he may see his predicament more clearly...20, GED, no social skills, can't even keep his nails trimmed or keep himself clean, socially awkward, slow processing...who would want to look THAT straight in the eye? If he doesn't take his medications....well he whiles his days away smoking cigarettes and pot and chatting with other marginal folks and sometimes if he is lucky he gets manic and imagines he will train hop to a grand life in Florida where he'll play in a band and live in the keys...that has GOT to be more fun. Who would take medications under those circumstances???

 

[BusynMember]

I was lucky to have two excellent, long term friends who knew I was different and liked me anyway.. It was fun to be with me sometimes...I had good humor about myself and was a great friend. I did not want to hang around with, what I considered, losers (drug addicts). Yet I have always had a hard time hanging around with people who care about normal things that have never mattered to me...how much money people have, how good someone else looks, the status of a career, and just basic small talk which bores me to death and which I am not very good at.

I became a loner, but not a lonely loner. Just a loner. I AM close to my hub and Julie, Jumper, Sonic and even 36. They all know I'm strange, but we all laugh about it.

I would have ruined my life if I'd taken drugs. If you have any mental illness or neurological difference, drugs make things worse, and that includes pot (sorry to those who think pot is harmless to all). Pot can actually trigger some disorders that were not active yet, such as schizophrenia and depersonalization/derealization. I have read this and have been told this many times. Depersonalization and derealization, which were my scariest depression symptoms, did not start with pot for me, but pot is often the main trigger to long term D & D. I did try pot. I'm lucky the D&D disappeared on prescribed antideprssants. That doesn't always happen with D & D. It can become chronic and it is very frightening to feel that maybe you and the world are not real (shudder). I wouldn't wish that feeling on anyone, but it's common with depression (a lot of the patients in the hospital with me had depression plus D & D). THat's the first time I knew others felt the same way I did.

I digress...

The most horrible candidates to take drugs are often the ones who take it and are then unable to quit and everything deteriorates. Drinking is nothing to sing about either if you are mentally ill or neurologically different, even if you only do it moderately.

Our difficult children don't see that. Sadly, some parents don't see it either and don't try to tell their "different" adult children that other people may be able to do this or that, but that it will make them worse. Not that they will listen to us, but, hey, we can say it once...we can try. It's better to start very early, as soon as ya know the child is neurologically or mentally different.