Just another stressy thing

[nerfherder]

Having a good morning, Tuesdays I get an extra half hour to laze in bed, don't have to start Kiddo's breakfast until 6am. Whee.

So I cleaned my little bathroom, thought about what I want to do to brighten it up, that cheered me some. (I'm in a down mood stretch, chewing my legs over June when the trees have little set fruit, the raspberries are starting to bear, the little bush cherries setting fruit, the first strawberries getting ripe... and how will I keep Kiddo on a leash if I can't get the Regional Center to help with a behavioral plan because I haven't filled out enough paperwork or the phase of the moon is wrong or the barometric pressure is all wrong or whatever?

Feeling a bit up this morning - then Blacksmith (who is having medical issues of his own and going to have a nice day waiting at the VA today) told me all the lights were on a couple nights ago at 3am after having turned them all off before bed (he and I usually do this, RN is often busy with the baby and the two older Vikings aren't tall enough to reach the ceiling switches.)

And bam, the headache, and the gut pain, because it was obviously Kiddo who went in to rummage through the house for something or other, which means she snuck out without waking me up (rare) and I have to start locking us in again.

Right, just let go. I *still* haven't figured out how to do that with her. Goat-wrassling helped - moving the babies in and out of the orchard to trim the grass that is. I've got a bunch of stuff to plant today, that will help, and I have to make phone calls, which could go either way.

Yeah, I read the article on detachment. Saying "let go" or "detach" and breathing through and all that can work. Really, it can. But I guess I still haven't figured out how to break that board. At this point it feels like a two or three board break.

 

[recoveringenabler]

In reading your post I could feel that reaction you had, probably many of us can, that realization that they somehow slipped through all the 'safety fences' you've built up around them..............sigh...............Good Lord, I get it. Well, you know we all are striving towards detachment, that is the goal, but along the way, there sure are some big holes we can all fall into, and it just plain sucks, it stinks, it feels bad, we get sick to death of all of it. I say feel all of that, it is what it is, we're human and the feelings are so overwhelming sometimes, it just makes more sense to be where you are, and when you aren't there any more, you can look once again at that whole 'detachment thing.' (Well, we can all lend a hand and help you karate chop those boards...............)

 

[Hound dog]

Learning to detach takes time and practice...........and I think to some extent.........a level of fed up. Know what I mean?? Fed up as in all the effort I put in results little or no change in the situation......and worry ect just makes ME miserable.

I hope you can get some sort of services for her, even if it's a type of respite care to give YOU a break.

Ya know, so many of her issues seem neuro related that whether or not she's ever had a brain injury.........you'd think it would have made a doctor think Oh gee, maybe we should take a look see and make sure there is nothing biological going on here as well. It makes sense to rule out bio causes before jumping head long into mental issues. While she might not have had an injury.......there could be some other issue going on that would show up on an MRI. If it were me, I'd just be happy with a neuro seeing her for an evaluation......cuz I doubt you'd have issue getting that MRI done.

Ruling out is how we discovered Travis' brain damage (although I'd been told he'd "be a vegetable, no one specified brain damage per se). Eye doctor was trying to figure out how he kept losing large chunks of vision........instead of a gradual loss which is what normally happens. I mean it wasn't cuz he wasn't going to the eye doctor (MD, not reg one), he was seeing him every 6 months because we never knew when he'd lose another large chunk. Of all people to start the ball rolling to get the answers.....it was an eye doctor. Makes me chuckle now, but at that time it made me darn mad.

 

[welcometowitsend]

Nerf - It sounds like you're riding the difficult child roller coaster. So hard to get off of it too. And when we do get off for a while they seem to have a way of pulling us back on somehow.

It is so difficult, especially if we don't know 100% what exactly the diagnosis or medical situation is with our difficult child. That makes it much more difficult to draw a line in the sand. It looks like you do have diagnosis for her but I'm wondering if there is something else there as well. I don't know the whole story though so.....

I agree with Hound though. I think I had to get to a point with difficult child where I realized that all the fighting I'd been doing on his behalf was for nothing because he doesn't want any help. He is happy living the way he does. Why? I don't think I'll ever understand. I have to let that go too. So, I have stopped fighting on his behalf for now. You can be sure that if he ever comes to me and seriously indicates that he wants help that I will be there for him to support him and help him along his journey.

Your difficult child still lives with you though and so you're in a different position than I am. I sure hope you can get some services for her that include either something residential or at least respite care for you. You must be absolutely exhausted.

 

[nerfherder]

In a reply elsewhere I noted how much I hate hope.

Well, here's something that might pan out, or might not.

Yesterday I called my mom's local Federation of Jewish Agencies, and talked to her Holocaust Survivor Services caseworker. We discussed the issues she has, the changes she needs, and what we can set up to make her life easier - she doesn't have the energy to prepare food anymore, there isn't a Kosher Meals On Wheels program (spoke to Mom this morning, she's going to be set up with the Vegetarian Meals on Wheels plan.)

So I mentioned (to clarify) that one reason we left her county years ago was the really crappy services for developmental/autistic kids both in school and through the Regional Center. She asked a few questions about Kiddo, developmental level and so on, and said "I'm getting goose bumps here. We're opening a home for Jewish kids with developmental delays out here, there will be room for six."

Have I mentioned how much I hate hope?

So we went back and forth on that a bit, and I started the email trail this morning. Ms. C is forwarding my contact info and what she knows about Kiddo to the program's director, I've forwarded more contact info on to Kiddo's caseworker here, and there's a meeting on the 8th to get started on the Guardianship paperwork and who to contact and who's butt to kiss, and all that.

I told Blacksmith about it, after being in that stressed grinding daze for a couple hours, and he said "You're going to play the Dachau card HARD, right?"

I answered "Oh, you KNOW it."

Sure, it may be gaming the system to squeeze Kiddo in just because of who I'm related to, who we know, what we know, etc - but honestly, I don't care anymore. One of the earliest lessons I got from another parent was "Look. You feel bad for the other kids and the other moms and dads too, and that's empathy. Empathy is good. But caseworkers and anyone dealing with limited funding will try and use that to keep Kiddo from getting as much services as you want, and you have to NOT FALL INTO THAT TRAP. You are your child's best advocate, sometimes her ONLY advocate, and you can't let people talk you into cutting down what she needs because 'other kids need this too.'"

Thank you all for your advice and thoughts. I'll bring up the neuro possibilities at the meeting on the 8th.

But some detail first. When you hear what Kiddo's got going on and think "possible neuro involvement" What exactly are you seeing there? I'd like some details or keywords so I can start digging into the Web and find enough medbabble and psychobabble to play chess with.

 

[InsaneCdn]

PM Buddy and ask her for some "medbabble"... Maybe do the same with Hound Dog (lisa)...

 

[trinityroyal]

A bit of preliminary autistic medbabble and psychobabble to get you started:

"difficulty with Executive Function" -- look up Executive Dysfunction when you're searching.
"problems with Sensory Integration Disorder"
"struggles with Activities of Daily Living (ADLs)"
"flat affect, and registers emotion that seems inappropriate to the situation"
"problems with gaze, eye contact"
"hyper-sensory" or "hypo-sensory" (depending on whether Kiddo reacts more than or less than neurotypical people to whatever stimulus you're discussing)
"earlier diagnosis on the autism spectrum, but I think there's more going on and Kiddo may need a full workup"

Crossing body parts and doing the nekkid chicken liver dance, hoping this all comes together for you and Kiddo.

A bit of Board History:

The nekkid chicken liver dance is something we do to send good juju (prayers, rattling beads, whatever fits with your belief system) to a board member who needs it for whatever reason. I don't remember exactly how it got started, but there you have it. Often, Butter Cricket Soup is served after the Nekkid Chicken Liver dance is complete. (Another long story).

 

[Hound dog]

Trinity helped you with several. I know they can be associated with autism........but they are also often associated with neuro issues.

It's going to sound odd, but the "tip off" that really made me wonder........was that she doesn't seem to have an "off" button when it comes to food. That is beyond impulse control....or lack there of....she just doesn't seem to have it. When it's impulse control the person still gets full eventually. They might regret eating too much, but it's not the same thing or severity. She doesn't indulge in snack foods ......she can't seem to turn it off with anything. Know what I mean??

Also if I remember right in one of your posts you indicated she'd relieved herself outside before (I think it was where she found the beer and dumped it out). That.....specifically at her age......is not lack of impulse control.......that is a red flag there is something that is just not "clicking" that should have clicked with her long ago. Again.....possible neuro.

Many good psychiatrists (who have the time) will at least attempt with symptoms such as hers to rule out any biological or neuro issues so they can be certain of the diagnosis. Because if they think they're just dealing with a developmentally delayed / autistic person.........when they're really dealing with a developmentally delayed / autistic person due to either a Traumatic Brain Injury (TBI) or other brain issue (bio/neuro not mental per se) how you deal with it is not the same. I probably didn't explain that well.........it's late and I've been doing physical labor all day and just walked 2 miles and even my brain seems to be exhausted. lol

Hmm. Let's put it this way.......... If her eating is impulse control you would deal with it by trying to teach self control. While you might not be completely successful.....you'd probably see some improvement. But if her eating issues are neuro related........as in she honestly doesn't get a message to her brain that tells her she is no longer hungry......just attempting to teach her self control would most likely drive you insane and change her behavior very little. Instead supervision would probably be called for. Know what I mean??

Or take this one: Travis' room looks like a hoarder took up residence. I'd like to say otherwise, but I'd be lying. We spent many years of his childhood locked in a battle over him cleaning his room. Clean is not good enough for me, I want it organized/cleaned. I'd send him in to clean. Check on him every 15 mins.......and rarely was their progress made. It wasn't defiance.....although I often wanted to strangle him. He often seemed to actually forget he was supposed to be cleaning. (I didn't truly by that for a very long time. ) The neuro that was trying to explain to me about how the areas of his brain that were damaged affect behavior did it this way..........Let me tell you about Travis (he'd met him once prior to his MRI, didn't really know him) you send him in to clean his room but he never seems to get anywhere and it's a pig stye. Right? I asked him how he knew. Then he explained that Travis is unable to organize due to the area of the brain that was affected. Next he said Travis can't follow more than one or two instructions at a time. (I was gawking at him now) This is because when presented with too much information his brain gets "overloaded" and shuts down to basic function or zones out....which eventually makes him forget the tasks he was supposed to do. From there he went on to describe Travis to me in such detail you'd have thought he knew him his entire life. It was downright spooky.

For years consequences never worked with these behaviors. Due to the reason behind them, consequences never would work with these behaviors. Instead, we had to work around them. For cleaning his room I used to sit on the edge of the bed and give him one task to do at a time like 1 start with the trash then make him stay on task until it was finished and give him a new one until the whole room was done. Whenever I want him to do something I only give him up to two things to do. If I actually have a longer list.......I wait until the two things are done before giving him one or two more. The progress from that point was amazing. Yes, his room is a stye right now, but then I've not had an opportunity to supervise long enough for him to actually clean it all the way either.

I don't know all of your difficult child's behaviors so I can't sit and make a list of all the possible neuro related ones. You could, however, look up cerebral palsy or Traumatic Brain Injury (TBI) symptoms and see if any of what they have listed sound familiar........if they do, add them to your list for the doctor.

You and difficult child are in my prayers. I've got body parts crossed..........and sending positive juju your way.

(((hugs)))

 

[nerfherder]

Pretty beat right now. Thank you both. The day we chose to "process" our first huge batch of bunnies was the day one of our last two pregnant does chose to go into labor. Between that and being the healthiest adult in charge of the kiddos (RN doing a 12 hour shift, Blacksmith recovering from his latest autoimmune reaction) I'm just...wiped. Kiddo was actually a huge help today, she's amazing with the rabbits.

FYI: All things considered, were she neurotypical her executive function would probably be better than ours if it wasn't for the hoarding. She rarely forgets where she put something, whereas I have a memory like a steel...thingy with holes in it, and I have actually seen Perfect Enough Child be unable to find a hairbrush or a tube of toothpaste because I rotated it on the counter 45 degrees while cleaning. And HER room is the pigsty. Kiddo's room would be, if I didn't clean stuff out - but it's hoarding, and she keeps her hoarded stuff organized after a fashion.

Some of what you said applies enough to me that I sort of wonder about lead paint/pipes exposure in my case during my first year of life - Mom and Dad were managing an apartment building built in the very early 1900's. I've wondered this before - my executive function and math skills are not what y'd call good. At all. One psychiatric wondered why I didn't get more Learning Disability (LD) tests when he found my SAT scores were 660 in the English and 440 in the math. That kind of discrepency in scores, he explained, meant something was more than just wrong. I was in community college by then, and there wasn't much point to further tests.

I'll re-read closer to the meeting on the 8th, and let y'all know how things go. Thank you all!

 

[nerfherder]

OK then, an update. We're having a brief cloudburst and I have time to type (weeding, milking, Angel just had her babies a couple hours ago and was so easy nobody noticed - she and her sister Dancer are not whineybutts like the rest of our Boer/Nubian/Nigerian/Pygmy circus!)

From my meeting notes, names and such changed...

Institutionalization - if there's an emergency need for placement, the nearest lockdown facility for kids like <Kiddo> is in Vegas. I have the info to look that place up, make sure she's not going to be put on a Greyhound bus to Sacramento for whatever reason.

Given the family history on <DEX>s side, the caseworker is going to get referral for their psychiatric to do a full evaluation, look for dual diagnoses. Yes, she's autistic. All previous psychiatric evaluations have been focused on confirming that diagnosis. Now I see that was a mistake, what they're going to do (and I was VERY specific about this, even let the tears show up) is look for *anything* that will put her under the Mental Illness umbrella. Even hinted that <DEX> might show mild signs of undiagnosed Schizotypal Disorder, and his first cousin is Schizophrenic, his mom had a whole raft of Anxiety Disorder diagnoses and medications.

I also noted that we have had in-home behavioral intervention which helped with quite a lot, but never had much impact on her theft/pilfering behavior. I signed off on a Release of Records from <The local>R.C. and <Business Name> Autism Services, so they can find out what In Home Behavioral she's already had.

I described in no uncertain terms (also with some of the tears, cracking voice, etc) what lengths she will go to for anything she decides she must have regardless. I noted how similar this behavior is to some of my friends' adult children* who are diagnosed Obsessive Compulsive Disorder (OCD), Bipolar, Schizotypal., and that I'm no longer convinced she's "just" autistic. *(via the Conduct Disorders parent forum, hi guys.)

My final thing... "I'm 50 years old. I have to plan my future. I can't do this anymore." So it is now officially in the notes that I want her placed ASAP, emphasized, hammered, etc.

Once again, a meeting that was mostly vague promises but something concrete may come of it. I keep saying that, I know.

So, I don't know. One thing her old Behavioral consultant hammered in was "Make her sound affected, don't ever be TOO optimistic, you have to bargain and if you're too optimistic, if you're too happy with how she's doing, they will start to taper off services."

 

[Hound dog]

Her old behavioral consultant was a smart cookie. You always take her worst day as your example, always.

Keeping fingers crossed, and keeping you in my prayers as well that something positive comes from this.........both for you and for difficult child.

Did they give you any sort of time frame for when you'd know if she qualifies for services? (I always try to pin em down with a timeframe......Travis was lost in the shuffle too many times, even though I called frequently)

Hugs

 

[nerfherder]

HD: All I was able to get was "I'll call my supervisor tomorrow to get the referral, I'll talk to the behavioralist tomorrow or Friday, and then we just have to wait and see." Yesterday I was not my happiest, these meetings always leave me wishing I could fix my mood by drinking or binge-snacking. Fortunately I know that's a pretty useless response, and I'm better off just making it through the day and getting a good night's sleep.