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*sigh* DH is maybe finally getting it?


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#1 Sdel

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Posted 08 February 2018 - 03:58 PM

So, DD10 "cut" GS's hair.  DH is flipping out over it.   It'll be easily fixed with a few quick snips and GS is still young enough that he isn't particularly aware of it.  I personally think Dh is making a mountain out of a molehill of this one issue...but whatever.  Although he's finally pissed off enough at her behavior to see the lack of social thinking behind it.  Yay?!

 

For at least two YEARS I've been telling him something is off and I suspect autism and he's blown me off.  He isn't interested in helping me discipline, bedtimes, routine etc. because he doesn't want to have them affect him or have to put out the effort to enforce it.  If she isn't supervised DD is just plain destructive.  If she's mad at you, she's destructive.  If she's not being "entertained" she's destructive.  You really have to go to a 9 and be in her face before she seems to recognize you seriously mean what you are saying.....and then she just tries to argue that "she was going to do it, you just wouldn't let finish doing what she was doing to avoid doing what you wanted"....*sigh*

 

The man who wouldn't even let me go to the public school for LD testing is now suddenly deciding maybe we need to rethink public school.

 

Yes, she's spoiled rotten, because half the time he is undermining my attempts at structure, routine, and discipline.  That is half the problem, the other half is I think she's just plain old exhausted.  She refuses to sleep.  But of course, I can't send her to bed early even though she's climbing the walls because that is "cruel".

 

 

Sorry, just venting.

 

Stefanie


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#2 OneStepAtATime

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Posted 08 February 2018 - 04:16 PM

:grouphug:

 

Get an evaluation.  Find a way.  And counseling as a couple may help.  She is 10 but she will soon be hitting puberty.  Things can really, really, really shift during puberty, and often not in a good way.  Find out what is happening so you can help her.

 

FWIW, DH did not want to see the elephant in the room with our kids, either, and I will regret forever that I let him talk me out of evaluations for years.  My children have two parents.  Only one of those parents was actually truly raising our children and it was NOT DH.  Red flags were everywhere and my mommy radar was clanging but I let him (and my mother) influence my decisions strongly.  It was a mistake.  He absolutely should not have had the lion's portion of say so in getting our kids evaluated.  He was not and never will be the primary caregiver.  I let him have too much influence over my decisions regarding what was best for our children and I harmed them by doing so.  Don't let yours do the same thing.  Find a way.  Get evaluations.  Find answers.

 

And hugs...


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#3 Sdel

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Posted 08 February 2018 - 04:54 PM

I've actually tried to do two evals.....one's thing was ADHD and they basically ignored anything that couldn't be twisted to fit ADHD.  The other one psych did the same thing.  Her thing was brain trauma in extreme premies.  Lucky us....DD was a 28 weaker.....but she also wanted to twist everything to "brain trauma" and ignore anything else....

 

DH hasn't ever stopped me....but he hasn't been supportive.  He's made it very clear that even if I got a dx he'd consider it a kind of Munchausen by proxy; me doc shopping until I got what I wanted.

 

I'm just really pissed off at this particular blow up from him.  He's grounding her from a specific activity (it's one night a week) for 4 weeks.   Which is fine...for what it's worth.  The reason I'm mad is because if I tell her that she can't go to this particular activity if she can't settle down and stop being destructive/picking on us/calm down and he'll (in her hearing) liken it to cruel and unusual punishment because he doesn't think it's appropriate to not let her go to her "primary socialization activity".

 

I think autism.  She's got the genetic background for it.

 

Stefanie


Edited by Sdel, 08 February 2018 - 04:55 PM.


#4 freesia

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Posted 08 February 2018 - 05:01 PM

I'm a bit confused.  Are you saying that you have evaluations, but you think that it is more?

 

In some ways, the exact diagnosis doesn't matter. What matters is finding strategies to help you raise and educate your dd.

 

It sounds to me that your entire family would really, really benefit from Family Therapy--preferably CBT based.  No matter what the diagnosis, that would help.  You are absolutely correct about getting hold of this before adolescence.  She needs to control her destructive impulses--whether she is NT, autistic, ADHD or whatever.



#5 freesia

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Posted 08 February 2018 - 05:02 PM

I've actually tried to do two evals.....one's thing was ADHD and they basically ignored anything that couldn't be twisted to fit ADHD.  The other one psych did the same thing.  Her thing was brain trauma in extreme premies.  Lucky us....DD was a 28 weaker.....but she also wanted to twist everything to "brain trauma" and ignore anything else....

 

DH hasn't ever stopped me....but he hasn't been supportive.  He's made it very clear that even if I got a dx he'd consider it a kind of Munchausen by proxy; me doc shopping until I got what I wanted.

 

I'm just really pissed off at this particular blow up from him.  He's grounding her from a specific activity (it's one night a week) for 4 weeks.   Which is fine...for what it's worth.  The reason I'm mad is because if I tell her that she can't go to this particular activity if she can't settle down and stop being destructive/picking on us/calm down and he'll (in her hearing) liken it to cruel and unusual punishment because he doesn't think it's appropriate to not let her go to her "primary socialization activity".

 

I think autism.  She's got the genetic background for it.

 

Stefanie

 

Try to focus on the good.  At least she is experiencing a consequence for her behavior.

 

i am very concerned about teh Munchausen by proxy comment.  This is another reason I think you need Family therapy.

 


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#6 PeterPan

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Posted 08 February 2018 - 05:17 PM

It sounds like you're saying the consequence isn't appropriate because it isn't instructive. That would be typical for someone who isn't getting what is going on and decides to swoop in with some huge NOW YOU'RE GOING TO LEARN kind of consequence.

 

Personally, I would find an exceptionally nice way to stop it. Like you don't tell the child, make his favorite dinner, get him calmed down and in a really good mood (ahem, it's valentine's), and you say btw, I think that consequence is too delayed for her to get the cause/effect, whatever, and that you think we ought to have THIS other consequence instead. There needs to be an instructive consequence, but a dc who is not getting cause/effect isn't going to learn from something that isn't making it really clear anyway. Most people make consequences that rely on inference. So then the dc is just going to be angry about the thing that got taken away and not get WHY or learn from it.

 

Yes, undiagnosed disabilities tear apart a marriage.

 

It's not diagnosis seeking to want explanations that make sense and answers that work. All you want is answers that work. Right now your dd is getting no intervention for self-regulation, nothing, and she's having significant, scary behaviors. She's requiring more support than your dh is acknowledging, and it sounds like it's leaving you exhausted and frazzled. It's pretty reactionary of him to say oh put her in the ps. You could, sure. I'm just saying that's a copout, because he's saying you're the problem rather than saying there IS a problem. 

 

There is a problem, so figure out a solution. Stop looking for the diagnosis and find what you NEED. Start making happen the interventions you NEED, and work backward from there to get the diagnosis. Sometimes, when you find the provider you need for the services to solve the problem, they can help you find the pysch, etc. you need.


Edited by PeterPan, 08 February 2018 - 05:18 PM.


#7 Sdel

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Posted 08 February 2018 - 05:25 PM

I'm a bit confused.  Are you saying that you have evaluations, but you think that it is more?

 

In some ways, the exact diagnosis doesn't matter. What matters is finding strategies to help you raise and educate your dd.

 

It sounds to me that your entire family would really, really benefit from Family Therapy--preferably CBT based.  No matter what the diagnosis, that would help.  You are absolutely correct about getting hold of this before adolescence.  She needs to control her destructive impulses--whether she is NT, autistic, ADHD or whatever.

 

I have one WISC from the ADHD person, that is now about 3 years old.  According that that person the scores only indicate ADHD, can't indicate anything other than ADHD, and I guess she completely ignored the autism screening that got a check mark for 80% of the question rated at 3 - 5?!?  I didn't get the results of that one other than a bar graph that boiled it down to 85% of behaviors for ADHD.  According to other autism moms, her scores showed an NVLD profile.

 

I didn't even pursue evals with the other psych because she was clear she'd already decided what hole she wanted DD fit and wasn't going to be open to anything other than that hole.  Same problem as the last one.    

 

No diagnosis, no treatment.  That's how it is.  I'm already had to pay for ST out of pocket and now I'm doing OT, but that is mostly limited to addressing handwriting and not much else.  She can only write 4 words/minute.  I don't have it in the budget to pay OOP for everything.  

 

My personal shortlist: Autism, ADHD (but meds don't really touch her attention issues), CAPD, Dyslexia, Dysgraphia, and potentially Dyscalculia.

 

Family therapy.....HA!  Hasn't done crap for anyone in this family yet.  And we've done residential placement for one kid.  Even I'm not 100% on board with that one.

 

Stefanie



#8 Sdel

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Posted 08 February 2018 - 05:56 PM

It sounds like you're saying the consequence isn't appropriate because it isn't instructive. That would be typical for someone who isn't getting what is going on and decides to swoop in with some huge NOW YOU'RE GOING TO LEARN kind of consequence.

 

 

There is a problem, so figure out a solution. Stop looking for the diagnosis and find what you NEED. Start making happen the interventions you NEED, and work backward from there to get the diagnosis. Sometimes, when you find the provider you need for the services to solve the problem, they can help you find the pysch, etc. you need.

 

 

I'm saying the consequence isn't appropriate, not because it isn't instructive, but that I think 'the crime' wasn't really that bad and it's two days after the fact.   She cut off a couple of locks of my grandson's hair and both of them say "he asked her too".   I think it's a totally normal "sibling" occurrence for something like this to happen at least once.  I'd be okay with making a bigger deal of it if it was an ongoing problem.  He's been ranting and raving at her off and on about how she committed some huge crime of violation against his body and identity.      

 

We do have this issue of her lack of respect for personal boundaries, but when it's important he never wants to be bothered to actually intervene.  

 

Stefanie



#9 Ausmumof3

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Posted 08 February 2018 - 06:00 PM

Ugh would suggesting a logical consequence like "help pay for the hairdresser cut" help? It's hard when approach to discipline is totally different.
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#10 freesia

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Posted 08 February 2018 - 06:03 PM

So, you are saying that you want an appropriate dx so you can access therapies?

 

What are you looking for/ hoping for to help with the destructive behavior?

 

I am sorry that therapy hasn't helped.  Was it Cognitive Behavioral Therapy?  It sounds like there is a lot of unhealthy thinking going on in your house right now and CBT helps target that.

 

It would be optimal to get on the same page as your dh.  If not therapy--do you have a pastor or other person in your life who can help you communicate better?



#11 Sdel

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Posted 08 February 2018 - 06:15 PM

Ugh would suggesting a logical consequence like "help pay for the hairdresser cut" help? It's hard when approach to discipline is totally different.

 

No.  He's made it clear he's going to double down and make this a personal vendetta.  When I brought up that he's nixed me on this punishment for other things and asked him he could see why I felt a little undermined his only response was "So, you've been mad at me for the last 2 months."

 

He's like this with other things too.   We've been having a similar dynamic over one of the cats.  She is known to pee on clothes left on the floor.  It's like if he puts his dirty clothes in the hamper somehow the cat has won.  It doesn't matter how many times I beg him to put his clothes in the hamper because I'm tired of having to spend an hour searching the house for his clothes when it comes time for laundry.  He doesn't care about how it would help me, he just feels he's entitled to throw his clothes all over the house and "not have the cat pee on them."  

 

Seriously, he's been largely non-supportive, but I don't feel like he's been actively picking fights and undermining until recently.  It's been less than a year since his mother died....I've been trying to have some grace and chalking some of it up to that.

 

Stefanie


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#12 Sdel

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Posted 08 February 2018 - 07:04 PM

So, you are saying that you want an appropriate dx so you can access therapies?

 

What are you looking for/ hoping for to help with the destructive behavior?

 

I am sorry that therapy hasn't helped.  Was it Cognitive Behavioral Therapy?  It sounds like there is a lot of unhealthy thinking going on in your house right now and CBT helps target that.

 

It would be optimal to get on the same page as your dh.  If not therapy--do you have a pastor or other person in your life who can help you communicate better?

 

Yes.  I see a lot of theory of mind, social thinking, rigidity, anxiety stuff.  She *can not* let go of things and she hates being told "no" or attempts to reel in the dysregulation.  I personally think the destructive behavior is part exhaustion, part sensory overload, part ADHD (won't wait for help/instruction so she ruins the activity doing the wrong thing with the materials), with a little bit of revenge thrown in. What part it is depends on what time of day it is.  She's usually fine in the mornings and destructive in the evenings. 

 

We've had 5 family members receiving some version of therapy over the years.  Some of it was CBT, some family therapy, one was a residential locked down facility.  Sorry, once you've had a kid be allowed to lie and make odd ball derogatory claims and be supported in doing so by the therapist you don't tend to want to go back.  The problem with therapy is people lie.  It only helps those who are actually open to changing their behavior and does nothing for those who don't see their behavior as a problem, or worse, manipulate the therapy for their own purposes.  And sometimes, the therapist just makes things worse.  BTDT, not interested in it again.  

 

Stefanie


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#13 kbutton

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Posted 08 February 2018 - 07:19 PM

I am so sorry. Bad therapy is worse than none. Our family therapist would totally get what you are talking about. If you want to share your geographic region via PM, I can send you a link if you are near her.

 

It sounds like your DH has some issues of his own--he seems very blind to theory of mind. 

 

Have you read any books about being married to someone with ADHD or autism (or if it's bad enough, narcissism)? The dynamic you have going on with your DH sounds like things in this book and maybe more too...https://www.amazon.c...L70_&dpSrc=srch

 

Also, our therapist found this book interesting (it's written to therapists): https://www.amazon.c...APP7XMACYMDE6GT

 


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#14 Sdel

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Posted 08 February 2018 - 07:38 PM

I am so sorry. Bad therapy is worse than none. Our family therapist would totally get what you are talking about. If you want to share your geographic region via PM, I can send you a link if you are near her.

 

It sounds like your DH has some issues of his own--he seems very blind to theory of mind. 

 

Have you read any books about being married to someone with ADHD or autism (or if it's bad enough, narcissism)? The dynamic you have going on with your DH sounds like things in this book and maybe more too...https://www.amazon.c...L70_&dpSrc=srch

 

Also, our therapist found this book interesting (it's written to therapists): https://www.amazon.c...APP7XMACYMDE6GT

 

He probably does have some sort of ADHD/rigidity issues himself; his family has a tendency towards autism.  He's not a narcissist, and usually we don't have this much issue.  It probably doesn't help that all three of my step kids have their issues with the youngest being a narcissist/sociopath.  Even when we were dealing with all that crap, it didn't feel like this.  I really do think some of it for DH is recent grief that he isn't really processing.    

 

FWIW, he did come back and apologize.  He understood what I was saying when he'd issued that particular punishment after giving me grief about me using it.  But we still disagree on if this is a molehill or a mountain.

 

Stefanie



#15 Sandwalker

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Posted 08 February 2018 - 07:43 PM



I'm sorry you're going through this.

I would start with the sleep issue. At ten years old, she needs to be in her room with no screens at X:00 (whatever time you guys decide) and not to come out until morning unless to use the bathroom (and she can have a cup to get water with if thirsty). I'd allow her to read and write, and have a set time when you or dh go in and tell her sweet dreams and lights out! And have a set waking time, too. No sleeping in till noon (teen years upcoming!!).

The second thing I'd do is feed her healthy, healthy foods, give a multi vitamin and extra vitamin D, maybe a B complex if she doesn't hate it. No dyes in food, no added sugar or high fructose corn syrup foods in the house. (Dh can suck it up.) I'd have lots of fruit for her.

Third, I would read to her as much as I could. If she is fidgety, she can knit, sew, or draw while you read. I wouldn't make her handwriting a priority since she struggles at this time, but I'd have her keyboarding daily. If the only screen available to her has a physical keyboard, she'll learn to type fast.

Fourth, I'd give her tons of physical affection, and share laughs with her. Tell her funny stuff that happens and don't be afraid to laugh (it's contagious and good for her).

Hang in there.

Edited by Sandwalker, 08 February 2018 - 08:31 PM.

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#16 PeterPan

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Posted 08 February 2018 - 08:23 PM

About the vitamin D. It's involved in methylation and when we ran genetics recently my ds turned out to have a defunct vitamin D receptor gene. Methylation issues are SUPER COMMON in autism, and vitamin D is part of that. We put my ds on niacin to bring down his methyl levels (which we know are high for his mix, not saying you should do that) and the vitamin D to stabilize it. Wow, huge, huge, huge changes. So much of the aggression and destruction and volatility is gone. The D is really key for stabilizing him, totally miraculous. So it sounds way too simple, but it's not crazy. Run the genetics and see, kwim? 

 

As far as your dh and the grief, well he can't process it if he doesn't know he's feeling it. ASD involves a lack of self-awareness. So he doesn't realize how he feels, so he can't even begin to process it. Personally, I would assume he's on the spectrum and treat him as such. He's either kissing it or all the way there.

 

No, the talk therapy sounds worthless for you right now. Bringing in a BCBA, that would be huge. Solving physical problems (D, methylation, etc.) would help. We've had some significantly rough patches, and for us no ONE THING was the answer. Like we needed the ABA *and* the methylation work *and* this and that and more. For somebody to say well a BCBA bringing in ABA/VB would solve the behaviors, well that's not acknowledging that my ds really needed some physical help to get there. 

 

On the dysregulation and behaviors (you said she ruins an activity, for instance), does she have a place to go to take breaks? She needs to take breaks. Enforced breaks. Breaks before she gets that uncalm. We worked for a year on how to take breaks, because for everyone to stay safe and calm and not have behaviors like that, we need to realize we're going yellow zone, realize we need a break, be able to say I need a break, and leave and go to your break space and then return.

 

That break thing took a long time for us. When we started, one incident and ds would be gone, toast, for hours. Now he's like 90 seconds. But we worked on it hard, a long time. And we didn't go for the gold on breaks all at once. It was in steps, like we're actually going to tell you you need a break and physically escort you to the break space. Later tell you you need a break and you go do it. He would bolt from the room and we ignored that part, working on language, till eventually he could maybe use his language. You can use visuals. You can model it yourself by saying Mom needs a break and going and taking a break. 

 

That's your ABA/VB kind of stuff a behaviorist can bring in, helping you problem solve. If you can get one you like, someone you can talk with, it would be worth your time/money. It would cost less than your unhelpful family therapy, and the person could actually be in your home, seeing the issues for themselves. 

 

Fwiw, on the hair, we have a gig in our house that everyone does it ONCE. Like you probably did it as a kid, I did, etc. We just said Hey, you've had your once, now don't do it again. Kids are curious. Because, honestly, of all the things to blow up a marriage over, this is so not the best one. Like really, let it be something major. The hair thing is just normal kiddishness, honest. Kids do that. As long as they only do it once, we're good.


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#17 Sdel

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Posted 08 February 2018 - 08:27 PM

 

 

 

I try so hard to do all this stuff.  This is the most frustrating because DH sabotages it.  He doesn't see it that way, but he does.   Between her fighting any of my attempts to help her regulate and his apathy I can't seem to win.

 

Sleep - He doesn't feel she needs a bed time so he won't enforce one and if I put her in bed she's making excuses to come out of her room to stay awake for hours.  I'll put her in bed at 8 and every 20 minutes there is some thing that will cause the world to end if she isn't allowed to do it until midnight.  It doesn't help that the whole time he's commentating about how I'm being mean putting her to bed "too early".

 

Food - He's already made it clear he won't "deprive" her or himself.  He won't keep the junk out the house because he wants it.  If I don't buy it, he'll go out and do it himself.  Not only will he not agree to not give it to her, he won't even help enforce her not just grabbing it by herself.  Both kids already think nothing of just raiding the panty for candy and crap without asking and no respect for meal times.  I have to threaten her to get her to take her ADHD pills already (and I'm unconvinced they help).

 

Fidgeting - she doesn't just fidget, she destroys.  Not only that, fidgeting doesn't actually seem to help, it seems to make things worse and she can't tell you one thing you just read while she was fidgeting.  She really does work best if she isn't allowed to fidget.  It's like whatever she is doing ramps her up sensory-wise.  Hopefully the OT can help us find things that don't amp her up.

 

Stefanie


Edited by Sdel, 08 February 2018 - 08:32 PM.

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#18 PeterPan

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Posted 08 February 2018 - 08:28 PM

My ds had horrific behaviors with losing, so what we did until it got better (like up until a bit ago, hahaha) was to tell him ahead of time the plan. Hey, we're going to play, and I love playing with you. If you go yellow zone or do things that are scary or start to lose your cool (insert whatever behaviors), I will feel scared and need a break. You'll need a break, but I'll need a break. And I want to play with you, but I'll need a break. So if you want to play, I need you to stay cool and take a break when I say we need a break so that we can all stay green zone and feel safe and play together. And if we need a break, that's cool too, because then after the break, when we're both green zone again, then we'll get to play again. So if we go yellow, we take a break, no matter what. Deal?

 

And that's the conversation we would have, every time. Any activity. Talking through what might happen, how we'll know if we need a break, taking breaks. *I* say I need a break if he doesn't agree he needs one. Any pretext, pre-emptively. Just call break and say you need to go to the bathroom and fall in for 5 minutes, kwim? Don't let it get to where the dc is red zone and having those behaviors. You break before. You control it when they're not able to control it for themselves, then they get used to being green zone and accept it, and eventually they learn to do it for themselves.

 

Look into Zones of REgulation by Kuypers. First step in changing your lives. 

 

If you want a laugh, it worked really well for ds. He's actually really good now about taking breaks and can handle losing. I, on the other hand, am horrible about losing. Like he actually points it out. I need someone to do ABA on me...  :lol:


Edited by PeterPan, 08 February 2018 - 08:30 PM.

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#19 Sdel

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Posted 08 February 2018 - 08:30 PM

About the vitamin D. It's involved in methylation and when we ran genetics recently my ds turned out to have a defunct vitamin D receptor gene. Methylation issues are SUPER COMMON in autism, and vitamin D is part of that. We put my ds on niacin to bring down his methyl levels (which we know are high for his mix, not saying you should do that) and the vitamin D to stabilize it. Wow, huge, huge, huge changes. So much of the aggression and destruction and volatility is gone. The D is really key for stabilizing him, totally miraculous. So it sounds way too simple, but it's not crazy. Run the genetics and see, kwim? 

 

 

Would this also be involved in MS?   I have a cousin with MS.  No idea where it came from.  DH has two nephews on the spectrum.

 

Stefanie



#20 PeterPan

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Posted 08 February 2018 - 08:33 PM

I went through 23andme.com for the basic testing, ran the raw data through promethease and KnowYourGenetics.com You'll probably find all kinds of fascinating stuff. There's some funky overlap in conditions, yes, and I'm not sure they know entirely why. But yeah, might be something to do, something that could give you actionable information. I was reading that 90+% of kids with autism have methylation issues. Like it's very likely to turn up something actionable for you.

 

I'm not saying that instead of behavioral help, because I'm all for behavioral help, in-home, plunk out the dollars, sell your cat and get there. 



#21 PeterPan

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Posted 08 February 2018 - 08:58 PM

Sleep - He doesn't feel she needs a bed time so he won't enforce one and if I put her in bed she's making excuses to come out of her room to stay awake for hours.  I'll put her in bed at 8 and every 20 minutes there is some thing that will cause the world to end if she isn't allowed to do it until midnight.  It doesn't help that the whole time he's commentating about how I'm being mean putting her to bed "too early".

 

Food - He's already made it clear he won't "deprive" her or himself.  He won't keep the junk out the house because he wants it.  If I don't buy it, he'll go out and do it himself.  Not only will he not agree to not give it to her, he won't even help enforce her not just grabbing it by herself.  Both kids already think nothing of just raiding the panty for candy and crap without asking and no respect for meal times.  I have to threaten her to get her to take her ADHD pills already (and I'm unconvinced they help).

 

Fidgeting - she doesn't just fidget, she destroys.  Not only that, fidgeting doesn't actually seem to help, it seems to make things worse and she can't tell you one thing you just read while she was fidgeting.  She really does work best if she isn't allowed to fidget.  It's like whatever she is doing ramps her up sensory-wise.  Hopefully the OT can help us find things that don't amp her up.

 

Stefanie

 

Does he have insomnia? Or maybe he's just really a late owl or has no sense of time? All that would be pretty common in spectrum (and humanity, but especially spectrum). Enforcing an early bedtime like 8pm does not help her sleep better. He may have memories of suffering with that as a kid. I sure do. So yeah, I'm crazy lax on bedtimes, but I know what it feels like. If your dh is identifying with your dd and thinks she feels that way, his take makes sense. Now if your way actually WORKS, like if she goes in at 8 and is asleep within 20-30 minutes, fine and dandy. But really, she may need more support to get there. There could be more flex. That vitamin D, done earlier in the day, could help with her melatonin levels. She may need really consistent routines and a longer calming routine. She may need a lot of sensory to help her body wind down. If someone has trouble regulating their body, going to bed abruptly really does feel cruel, honestly. He may just be telling you what it really feels like. 

 

On the food, I would stop arguing over it. If they're binging, switch them to Vyvanse, which is on-label for binge eating and can cut down excessive grazing. If you up the good they eat, it will counteract the bad. Give her fiber gummies and move on. It sounds like they're hungry a lot. They may have low oral tone or not realize how hungry they are until an impulsive moment when they're finally FAMISHED. If you talk with nutritionists, they want you eating 6-9 small meals a day. So if your kids are not respecting the 3 meals thing, then switch them over. It's really ok. 

 

It sounds like you've never felt what this stuff feels like. Honestly, the stuff your dh is saying is legit. That's really how it feels. You may need to change what you're serving to work better for their sensory if they're not eating at meals. For instance, it drives my dd BATTY that I eat so much soft stuff. Like just my bent? It will be ground meat and soups every day. Every single day. She's like oh my lands give me a ROAST. She came home and cooked a meal and I couldn't even touch it. I chop my salad super fine and she likes it in huge pieces, artfully arranged. It's actually painful for me to try to eat that. We're totally opposite for our needs. You could literally be cooking foods that are tasty but just horribly uncomfortable to eat, so they don't eat much and then are hungry later and eating junk.

 

I would assume the autism in both your dd and dh and then start making changes that would be obvious if it were autism. I would assume there's something to what your dh is saying and not assume he's only a donkey's butt. Some of this stuff is actually solvable sometimes. Maybe he really is part of a donkey, but there could actually be something to it.


Edited by PeterPan, 08 February 2018 - 09:00 PM.


#22 Ausmumof3

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Posted 08 February 2018 - 09:15 PM

No. He's made it clear he's going to double down and make this a personal vendetta. When I brought up that he's nixed me on this punishment for other things and asked him he could see why I felt a little undermined his only response was "So, you've been mad at me for the last 2 months."

He's like this with other things too. We've been having a similar dynamic over one of the cats. She is known to pee on clothes left on the floor. It's like if he puts his dirty clothes in the hamper somehow the cat has won. It doesn't matter how many times I beg him to put his clothes in the hamper because I'm tired of having to spend an hour searching the house for his clothes when it comes time for laundry. He doesn't care about how it would help me, he just feels he's entitled to throw his clothes all over the house and "not have the cat pee on them."

Seriously, he's been largely non-supportive, but I don't feel like he's been actively picking fights and undermining until recently. It's been less than a year since his mother died....I've been trying to have some grace and chalking some of it up to that.

Stefanie


My dh isn't the worlds best hamper user either.

I stopped picking up after him. Also ds11. I still help the younger ones out.

When the five am morning comes when there's no socks a few times and the answer is all washing that was in the laundry basket is washed they get better. You just have to train yourself to ignore the problem for a while.

Only if it's a hill to die on.

I have a cat that's a jerk about litter box use and it causes conflict here too. I took her on before I got educated about the wildlife damage from outdoor cats and now I feel too guilty to have an outdoor cat but I am sick to death of cleaning up cat pee. I won't be having another cat after this one.

#23 Sdel

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Posted 08 February 2018 - 09:26 PM

 

 

On the dysregulation and behaviors (you said she ruins an activity, for instance), does she have a place to go to take breaks? She needs to take breaks. Enforced breaks. Breaks before she gets that uncalm. We worked for a year on how to take breaks, because for everyone to stay safe and calm and not have behaviors like that, we need to realize we're going yellow zone, realize we need a break, be able to say I need a break, and leave and go to your break space and then return.

 

That break thing took a long time for us. When we started, one incident and ds would be gone, toast, for hours. Now he's like 90 seconds. But we worked on it hard, a long time. And we didn't go for the gold on breaks all at once. It was in steps, like we're actually going to tell you you need a break and physically escort you to the break space. Later tell you you need a break and you go do it. He would bolt from the room and we ignored that part, working on language, till eventually he could maybe use his language. You can use visuals. You can model it yourself by saying Mom needs a break and going and taking a break. 

 

 

Breaks usually result in an argument and then a tantrum.  Hours of it.  She flat out refuses them until she gets to the point where she breaks down to tears.  The more insistent I am, the more she fights.  Tried the time out chair at two and three......6 hours before she'd sit the 2 minutes.  Usually she'd spend 4 of those hours sassing you.  When she was two you had to strap her down in the car seat and drive around for about 2 hours to get her to nap.  You would think she was having a seizure by how hard she would buck against the straps.  But it was the only way.  She would run across the living room and throw herself head first into the couch, repeatedly, if you didn't strap her down and drive her.  Even at 9 months she'd have to fight against some kind of restraint before she'd finally break down and go to sleep.

 

Even now she won't sleep until you can some how get her to shut up and be still.

 

She ruins activities not by her behavior per se, but because instead of waiting for instructions she's gone a head and say; tied all the strings together in a knot instead of waiting to use them for how they are supposed to and now there is no more string to use and she can't finish.  Or she'll cut something wrong because she won't wait for instruction.  Or she'd dumped all the sand out and mixed it all together on the table instead of waiting to fill the jar layer by layer.  That kind of thing.  She'll just grab and mess with things instead of following instructions.  She actually handles group activities pretty well.

 

Stefanie



#24 Storygirl

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Posted 08 February 2018 - 09:27 PM

I'm sorry things have been so rough. Have you talked with the doctor about exploring a different ADHD med? There are many options, and we found that some worked dramatically better for DS than others. Guanfacine and Clonidine are two that often make people sleepy. DS is never tired during the day, but when we tried guanfacine, he was sooooo tired; it didn't work for him. Now he takes Clonidine at night; it was added to his med regime for a specific purpose, but an added benefit is that it helps his sleep. Taking a stimulant during the day and guanfacine or clonidine at night is not an uncommon combination for people with ADHD.

 

Since you aren't sure the meds are working, it is worth talking to the doctor about trying another type or adjusting the dosage. Another option might work better for her.


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#25 PeterPan

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Posted 08 February 2018 - 09:49 PM

That's stuff school could take on. It wouldn't really solve home, but if you just want it solved, there you go. For us, that wasn't stuff I was able to break through on my own. Maybe in theory I could have, but we brought in outside help for a lot of hours a week (10-20). That was ABA for us. 

 

I'm pretty pragmatic these days. Like this is what needs to happen and somebody needs to do it and it doesn't matter who does it. If you bring in someone, fine. If you can do it yourself with the counsel of a behaviorist, fine. If you want to chug her off to school and let them do an IEP and sort it out, fine. Just saying that's some pretty extreme stuff and that it doesn't change without help. 

 

Not a fun stage. What do you want to do to change it?



#26 Sdel

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Posted 08 February 2018 - 10:08 PM

Does he have insomnia? Or maybe he's just really a late owl or has no sense of time? All that would be pretty common in spectrum (and humanity, but especially spectrum). Enforcing an early bedtime like 8pm does not help her sleep better. He may have memories of suffering with that as a kid. I sure do. So yeah, I'm crazy lax on bedtimes, but I know what it feels like. If your dh is identifying with your dd and thinks she feels that way, his take makes sense. Now if your way actually WORKS, like if she goes in at 8 and is asleep within 20-30 minutes, fine and dandy. But really, she may need more support to get there. There could be more flex. That vitamin D, done earlier in the day, could help with her melatonin levels. She may need really consistent routines and a longer calming routine. She may need a lot of sensory to help her body wind down. If someone has trouble regulating their body, going to bed abruptly really does feel cruel, honestly. He may just be telling you what it really feels like. 

 

On the food, I would stop arguing over it. If they're binging, switch them to Vyvanse, which is on-label for binge eating and can cut down excessive grazing. If you up the good they eat, it will counteract the bad. Give her fiber gummies and move on. It sounds like they're hungry a lot. They may have low oral tone or not realize how hungry they are until an impulsive moment when they're finally FAMISHED. If you talk with nutritionists, they want you eating 6-9 small meals a day. So if your kids are not respecting the 3 meals thing, then switch them over. It's really ok. 

 

It sounds like you've never felt what this stuff feels like. Honestly, the stuff your dh is saying is legit. That's really how it feels. You may need to change what you're serving to work better for their sensory if they're not eating at meals. For instance, it drives my dd BATTY that I eat so much soft stuff. Like just my bent? It will be ground meat and soups every day. Every single day. She's like oh my lands give me a ROAST. She came home and cooked a meal and I couldn't even touch it. I chop my salad super fine and she likes it in huge pieces, artfully arranged. It's actually painful for me to try to eat that. We're totally opposite for our needs. You could literally be cooking foods that are tasty but just horribly uncomfortable to eat, so they don't eat much and then are hungry later and eating junk.

 

I would assume the autism in both your dd and dh and then start making changes that would be obvious if it were autism. I would assume there's something to what your dh is saying and not assume he's only a donkey's butt. Some of this stuff is actually solvable sometimes. Maybe he really is part of a donkey, but there could actually be something to it.

 

 

Sleep - No, DH works nights.  He likes to stay up later at night, but he doesn't have problems going to sleep.  I like to stay up later at night too, but that doesn't work too well for having to be up in the morning for our responsibilities.  I don't make them sleep at 8, but I want them in their rooms and quiet from 8 on.  Lately, If I don't get 12 hrs I'm not functioning and the screaming means I can't relax enough to get to bed on time.  My biggest issue is that DH lets them scream their heads off and run recklessly through the house slamming doors even while I'm trying to wind down for sleep.  Because that is what they do from about 4 pm on.....nothing but scream, bicker, fight, make messes and whine at me and generally act like tired toddlers act.  Occasionally they'll go outside for more than 2 minutes, but a lot of times they just whine about my suggestions and go on screaming, bickering, fighting, and making messes.  Trust me, he isn't identifying with her....he's just being lazy.  He has no problem abruptly throwing her into her room and demanding she go to sleep once she starts annoying him enough....but he's perfectly fine with her staying awake all hours and pestering me.  

 

Honestly, it makes my life run more smoothly for her to sleep in until 10am, but I really need to be able to get up at 6.  In order to do that she has to be quiet and leave me alone so I can actually go to bed.  DH won't make them go to bed, but he also won't put his foot down to keep them quiet either.

 

She doesn't have oral texture issues and his are easy enough to address by cooking every veggie separate from the meat.  She eats just fine and always has.  She's just your typical 10 year old who'd rather have cookies and candy than fruits and veggies combined with a lack of concern for obeying me.  She's generally argumentative about everything, so she'll tell you she doesn't want something (anything except the junk), but if I put my foot down at meal time she doesn't have a problem actually eating it.  The problem is that I flat out don't want her eating the stuff.  I really don't want it in my house right now.  My family has horrible allergy and GI issues (I'm starting to suffer the GI issues) so I really want/need us to start addressing diet.  

 

Stefanie


Edited by Sdel, 08 February 2018 - 10:55 PM.


#27 Sdel

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Posted 08 February 2018 - 11:05 PM

 

Not a fun stage. What do you want to do to change it?

 

Honestly, what I need the most is DH to actually step in or stay out of the way.   If he's going to take over and "let me rest" he actually needs to take steps to keep the kids from bothering me and not be too busy playing on his phone. 

 

I'd really like a diagnosis or something so we can get some real therapies and not this crappy patchwork.  Hopefully after a couple of months OT will start helping.

 

Stefanie



#28 Sdel

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Posted 08 February 2018 - 11:07 PM

 

 

Since you aren't sure the meds are working, it is worth talking to the doctor about trying another type or adjusting the dosage. Another option might work better for her.

 

The meds work, until the sensory overload kicks in.  I get a good 1.5 hours on it.   After that, she might as well not even be taking it.  

 

Stefanie



#29 Storygirl

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Posted 08 February 2018 - 11:27 PM

I wouldn't consider 1.5 hours of the meds being in effect "working." Sometimes people can be misdiagnosed with ADHD, when the behaviors are actually caused by something else. Or the current medications are not effective. Because someone is already prescribing meds, it can be a good place to start by working out a different dosage or type of medicine. Because you can accomplish that much faster than getting new evaluations and diagnoses.

 

I can't tell by your response if you have adjusted the meds yet or not.  It took trying about five meds and quite a few months before we found what worked best for DS13. Our pediatrician worked closely with us for a good period of time to figure it out.

 

I think the issues you face go beyond adjusting the meds, but I think it gives you a starting place.

 


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#30 PeterPan

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Posted 09 February 2018 - 12:24 AM

Yeah, 1.5 hours might be the meds kicking in. Something is very off there. And the sensory will sometimes even IMPROVE on meds, not the reverse. But that 1.5 for meds to kick in, look it up. My dd is considered really atypical, because hers are obvious in 30 minutes. For many people it's 1-2 hours.

 

Why are you needing 12 hours sleep? Not that we want to discuss your health, but I'm just saying maybe head to a doctor or alternative person and see if it's solvable.


Edited by PeterPan, 09 February 2018 - 12:24 AM.


#31 Sdel

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Posted 09 February 2018 - 01:01 AM

Yeah, 1.5 hours might be the meds kicking in. Something is very off there. And the sensory will sometimes even IMPROVE on meds, not the reverse. But that 1.5 for meds to kick in, look it up. My dd is considered really atypical, because hers are obvious in 30 minutes. For many people it's 1-2 hours.

 

Why are you needing 12 hours sleep? Not that we want to discuss your health, but I'm just saying maybe head to a doctor or alternative person and see if it's solvable.

 

 

The meds are the short acting.  In and out in 4 hours and usually kick in after about 30 min.  She can tell when they are working.  On a good day she can get 1.5 hours of effect in before she starts losing it.  She loses it more slowly, but she does eventually get out of control and then the second dose doesn't appear to kick in at all.  The days where the sensory/sleep issues start off bad neither dose seems to take effect.  Every med has been like this.  

 

As for me, I had mono in my 20s and never fully recovered from it.  I got the flu in September and have just felt off ever since.  I have quite a few symptoms of chronic fatigue and/or fibromyalgia, but they are mild.  I also have severe allergies to practically everything that saps my energy at times.  Seriously, if I don't get that 12 hours, I'll crash hard sometime in the afternoon or early evening.  FWIW, I am also sensory and most of my issues affect my ability to get to sleep. 

 

Stefanie



#32 Heathermomster

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Posted 09 February 2018 - 08:26 AM

So, DD10 "cut" GS's hair. DH is flipping out over it. It'll be easily fixed with a few quick snips and GS is still young enough that he isn't particularly aware of it. I personally think Dh is making a mountain out of a molehill of this one issue...but whatever. Although he's finally pissed off enough at her behavior to see the lack of social thinking behind it. Yay?!

For at least two YEARS I've been telling him something is off and I suspect autism and he's blown me off. He isn't interested in helping me discipline, bedtimes, routine etc. because he doesn't want to have them affect him or have to put out the effort to enforce it. If she isn't supervised DD is just plain destructive. If she's mad at you, she's destructive. If she's not being "entertained" she's destructive. You really have to go to a 9 and be in her face before she seems to recognize you seriously mean what you are saying.....and then she just tries to argue that "she was going to do it, you just wouldn't let finish doing what she was doing to avoid doing what you wanted"....*sigh*

The man who wouldn't even let me go to the public school for LD testing is now suddenly deciding maybe we need to rethink public school.

Yes, she's spoiled rotten, because half the time he is undermining my attempts at structure, routine, and discipline. That is half the problem, the other half is I think she's just plain old exhausted. She refuses to sleep. But of course, I can't send her to bed early even though she's climbing the walls because that is "cruel".


Sorry, just venting.

Stefanie

I’m very confused. Your 10 yo daughter cut your grandson’s hair? What does the term GS mean?

Edited by Heathermomster, 09 February 2018 - 08:28 AM.


#33 PeterPan

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Posted 09 February 2018 - 08:33 AM

Or maybe GS is godson. Grandson would be gds I think. 

 

The meds are essentially a dopamine uptake inhibitor, so when they wear off the dopamine levels are lowering, creating a temporary rebound effect that is worse than when you started. If you're taking meds twice a day, you're going through this cycle over and over. It's actually very unhealthy, and we've had threads in the past where we've looked at the shocking increase in juvenile bipolar diagnoses and the correlation with the rise of use of stimulant meds. So putting her on an XR med, something like vyvanse or concerta, would give you more stable levels and stop this. If she's dosing twice a day anyway, it would be a logical solution. Right now her levels are literally going up and down, which is causing problems. Vyvanse has the most stable delivery system, but I would go for the XR version of whatever she's already on. 

 

Yeah, I used to have CFS, MCS, food allergies, adrenal fatigue, all that junk. It's hard to work on your own health when you have a lot of other stuff going on. 

 



#34 kbutton

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Posted 09 February 2018 - 05:43 PM

Yeah, 1.5 hours might be the meds kicking in. Something is very off there. And the sensory will sometimes even IMPROVE on meds, not the reverse. But that 1.5 for meds to kick in, look it up. My dd is considered really atypical, because hers are obvious in 30 minutes. For many people it's 1-2 hours.

 

Why are you needing 12 hours sleep? Not that we want to discuss your health, but I'm just saying maybe head to a doctor or alternative person and see if it's solvable.

 

If you are ramped up all day from overstimulation from your family, it also takes longer to recover, lol! I have to have TWO HOURS of downtime to get decent sleep, so I totally get that.

 

My kids' meds are working in about half an hour at the most. 

 

The meds are the short acting.  In and out in 4 hours and usually kick in after about 30 min.  She can tell when they are working.  On a good day she can get 1.5 hours of effect in before she starts losing it.  She loses it more slowly, but she does eventually get out of control and then the second dose doesn't appear to kick in at all.  The days where the sensory/sleep issues start off bad neither dose seems to take effect.  Every med has been like this.  

 

As for me, I had mono in my 20s and never fully recovered from it.  I got the flu in September and have just felt off ever since.  I have quite a few symptoms of chronic fatigue and/or fibromyalgia, but they are mild.  I also have severe allergies to practically everything that saps my energy at times.  Seriously, if I don't get that 12 hours, I'll crash hard sometime in the afternoon or early evening.  FWIW, I am also sensory and most of my issues affect my ability to get to sleep. 

 

Stefanie

 

You really need her to be on some kind of extended release. I also know multiple people taking full more than one full-dose XR med at a time, and I think one of those people takes 2 full doses in the AM and then 2 more in the afternoon. Some people's ADHD is truly off the charts! 



#35 exercise_guru

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Posted 10 February 2018 - 12:29 AM

It sounds like you have a lot going on. I have on child that can unravel the whole house It doesn't sound the same as what you are describing but we too have a break place. Everyone is alowed a break place and a chance to get back into green.

This year I told everyone we would work on social thinking and better comunication.

I have a technique from them that is something like "if you define the expectation you can eliminate 80% of the unwanted behavior"

Try to think of something small you could maybe achieve and work on that. Define the expectation.

You spouse has similar issues to your daughter which is why he can't spot it. One way to get her evaluated would be to let her try school and so the eval that way.

BTW you said your dh works nights. That is the worst on someone and hard on relationships. I have lived that. It brings out the worst in people. I have no idea how you can homeschool while he is sleeping. I hope you find s me strategies that work

Edited by exercise_guru, 10 February 2018 - 05:13 PM.


#36 Storygirl

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Posted 10 February 2018 - 11:50 AM

Sdel, I can understand how tired and frustrated and overwhelmed you are. I want you to know that even though you feel alone at home, that you can find support here on the LC board. The posters here have really been helpful to me.

 

Here is why I have great empathy for you: DS13 has NVLD, ADHD, SPD, ODD, dyspraxia (lots of fine motor troubles), trouble sleeping, and issues with social skills. From what you have written, I suspect those same things apply to your DD. DS also has learning disabilities in math and reading comprehension, and Tourettes. ASD was ruled out by his first neuropsych, but only with an incomplete screening. We most likely will seek a more complete autism screening soon.

 

We had DS's initial evaluations done just as he was turning 10. He had exhibited issues for his whole life, but that was the age that it all came together and was super overwhelming at home and seemed impossible to manage without help. I was exhausted and at my wits' end. That is fairly common with NVLD, by the way -- many kids are first diagnosed around fourth or fifth grade.

 

It's also not surprising that your psych did not diagnose the NVLD, because it is not in the DSM. Many psychs follow the DSM exclusively, so if it is not in there, they don't acknowledge that it exists. If you have not already, you can find a lot of information about NVLD online.

 

I am fortunate to have a supportive husband, but otherwise, I deal with many of the same issues that you are. Others on the LC board do, as well. If you keep posting here, you may find a community that can offer you some emotional support, as well as posters who have found ways to address some of the issues that you face and may have good suggestions to offer.

 

:grouphug:


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#37 Mainer

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Posted 10 February 2018 - 04:11 PM

I really connect to what you said about your DH feeling entitled to leave his clothes on the floor without having the cat pee on them. Sure, maybe... but since the cat WILL pee on them, you have to move them if you want them un-peed-upon!  My DH says things like that too.... like in an ideal world things should be like X, but he can't accept that we don't live in an ideal world. Instead, he just gets mad when things aren't ideal. You're not alone!

 

 

 


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#38 Sdel

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Posted 11 February 2018 - 01:34 PM

I do plan on coming back to the thread...but when it rains, it pours.  

 

We are putting the dog down tomorrow.  This is DD's dog, and the last of my "pack", so it's tough.

 

Stefanie



#39 Storygirl

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Posted 11 February 2018 - 05:58 PM

:grouphug: :grouphug: :grouphug: