Daughter in Crisis-Don't know where to turn for help

Post Reply New Topic

Mama to Grace -

It's been forever since I've been here, for some reason I felt the need to check in and now I think I know why.

I don't know where to start, so I don't write a novel, cause I don't have time for that right now. For the moment, let me just say;

Always saw huge similarities between ds and grace.
Ds had explosions when small, which I now know we're expressions of anxiety
I pulled him out of school end of grade 5, to homeschool
Best decision ever
Once we allowed a complete reset, with no anxiety for a while, everything got better!
This year, he wanted to try public school again (because the anxiety was so distant, he was ready to try)
Tried and had terrible panic, withdrew again.
He has residual anxiety from the panic, I'm hoping that with a little down time, he will be "reset".

We tried an anxiety intensive program (didn't work). Anyway, during the program, ds said something I thought was really profound - "they are always talking about me like I'm such a mess. I'm not a mess until they start in with that". I then said, well, if you had to do all of the things considered "normal" how would you be? And he said "a mess. But why do I need to do everything normal?"

Right now, we aren't even worrying about school structure at home. My son is super smart. When pushed, he withdraws and learns nothing. If I leave him alone, he is an incredible sponge. When leaving him alone, if you speak with him, you may think he's quirky, but you'd never think he's got any disorder which would leave him unable to function. He's smart and engaged. When living in a state of anxiety, people would view him as clearly handicapped.

For now, we are just leaving him to do his own thing, hoping that he will buy into exercise (at the moment he won't). We will enroll him in a community college course about one of his interests, just to get him out of the house (but that's not until fall).

The bottom line for us.....

Let the anxiety reduce, and everything gets better. At that point you can slowly add in stressors.
Only one med has made a difference, propolanol. This is a high blood pressure med, which reduces the adrenaline surge around anxiety. (It does nothing for thinking, just the physical manifestations).
It will be ok

Kailuamom-it is very helpful to hear of someone else that understands what we are going through. I think what you are saying makes sense, and at some point I am going to need to make the same decisions it sounds like you have made. It gives me hope that this anxiety can be reversed. THANK YOU

Having ridiculously bad allergies right now so very hard for me to focus, but I still want to try to contribute if I can.

First, I am so sorry...I can really see my daughter wearing these shoes one day. She sounds very much like your daughter (she is 9). Does not "look" autisitic. Functions surprisingly well at first with some mutism, then gets worse as times goes on. Perceives things as negative by default. Gets anxiety, has a hard time "letting go" of negative incidents. Gets upset when I try to help her understand her feelings, social interactions, why things went wrong, how to make things go right, etc.

I have scanned most of what has been written, but I may have missed some things. If so, I am sorry for repeats.

First, I agree with momsparky that you have to get her to let you label her emotions for her. This will not be easy, but if you can find a time to talk about it when she is not upset, perhaps you could have some success. My daughter and I had such a conversation once, and I explained to her why I was trying to talk to her about unsuccessful interactions (that was her "thing"). We agreed that we would first meet her needs, then she would allow me to meet my "need" to try to help. For her, she just wanted me to listen to what happened and ONLY understand things from her perspective and feel bad for/with her. So, even if it is very clear to me that she misunderstood someone else's perception, at the beginning of the conversation, all I can do is recognize her feeling of being terribly wronged, of the other person being 100% at fault, etc. This is VERY hard for me. But, after I do that, and she feels comfortable that I have sat in her pain for a while, THEN she will honor my need to try to help her learn a new way to manage. I know I am rambling...that is not your issue...the point I am trying to make is try to work with her to find a way to get her to recognize that it would be of benefit to her if you could help label her emotions. Find out what she needs you to do for her first. Because one of the keys for my son was for him to first label the emotion correctly. Then we could work backwards to try to find the "precursors" so that he could implement preventative strategies. I don't know if I am making sense. It was like we had to get him to correctly say "this is fear." Then, we could start to talk about what was happening right before "fear" so that we could start to recognize when those things were happening. Then once he could recognize that the things that lead to "fear" are happening, then we could start giving concrete things to do to redirect the "cycle."

Regarding IBS. I have it. It is miserable. And emotional turmoil and stress definitely make it worse. And the emotional turmoil and stress IS all in my head. The emotional turmoil and stress IS psychological. But the pain it causes is NOT. This is one reason why I suggest you try to stick it out withe the biofeedback. I have worked in a biofeedback clinic before and have seen results that are nothing short of striking. Regarding the breathing thing, here is what I have to offer: My son, moreso than my daughter, automatically defaults to a very literal interpretation of language. If he is sick, stressed, etc, it is very hard for him to move past this initial interpretation sometimes. Telling your daughter to breathe from her stomach is ludicrous because of course no one breathes from their stomach. It is impossible. She is getting hung up on that, and for as much as we might hope that any grown human would be able to figure out what the problem is and change the analogy, sadly, many very bright people...just do not get it. I will share the analogy that helps me with "stomach" breathing. The first thing is to establish the analogy of lungs being like a balloon. That is not so difficult for people with literal interpretations to do. To stomach breathe, the image that I use is that ALL of the air needs to go to the bottom of the balloon before ANY of the air can be allowed in the middle and top part of the balloon. In "normal" breathing, most of the air is "targeted" to the middle of the balloon. Some might get to the bottom just by randomly floating there, but it is different than in "stomach" breathing (call it something different...maybe even ask her what makes her remember to fill the bottom of the balloon first), because in stomach breathing you are consciously trying to fill the bottom of the balloon first. As an aside, hyperventilating only fills the top part of the balloon. If she hyperventilates when she has anxiety or has shallow breathing, it may help her to visualize her "balloons" and focus on making sure her air is getting further down.

I don't know if this will help your daughter at all or not. But one thing that helps me with anxiety is to understand that the physical sensations you feel are meant, from a biological standpoint, to alert you to physical danger...to prepare you to run or fight. When I start experiencing the physical feelings of anxiety, I tell myself that there is no reason for me to run or fight. There is no bear. No fire. No immediate danger. And that my body is misperceiving the situation, so it is time to turn on my brain and ignore my body. I focus on logically evaluating the situation, almost as if I was Data or Spock. All the while, devoting a part of my brain to keep saying "your body is wrong." It's weird. I know. But it works for me.

Stay strong. You will find your way through this.

I studied judo from about age 8 to age 17. My mother studied Tai Chi when she was around 60. I think it has a lot of fluid movements. In a zen way of merely allowing it to happen, I think it helps to connect you with both your body and your immediate environment.

With a variety of sports, I have learned from a mix of both group lessons and individual lessons. I think this probably changes over time and is highly personal to the individual.

When I was in my mid-30s, I took up rock-climbing in the gym. It's not just a matter of putting my foot on a foothold. It's putting a specific part of my foot on the foothold. Even in my middle years, this helped me connect more with my body. And recently, sharing with a new friend that I sometimes have knee problems on hikes where I'm descending in elevation, well, she has a background in dance and she showed me on the stairs how to go toe first and roll into the rest of the foot. And she described dance as helping a person become more aware of their muscles. So, I'm still learning.

I notice you have a difficult time with the concept of anxiety/stress causing stomach pain or other digestive discomfort. It doesn't mean that is all in her head the stomach pain is real. But stress/anxiety can cause that I have PTSD and Generalized Anxiety Disorder with my aspergers and it constantly causes that kind of thing for me, reducing the stress much of the time helps a bit. Also I'd be careful with assuming this comes from a place of anger, sounds like she's very afraid of the world around her and feels threatened....it can look angry but underneath she is likely very afraid and doesn't know how to handle it and has probably developed the defensive/angryness as a defense mechanism because she feels threatened.

Also if the current psychiatrist thinks she shouldn't have been prescribed that anti-depressant why is she still on it? There are drugs designed specifically for anxiety so not sure why they'd start with those meant for depression. I have found many anti-depressants make me more anxious...except the current one I started called mirtazapine which is a very irregular one with more sedating effects whereas most have more stimulating effects. Mood stabalizers and atypical anti-psychotics they also sometimes use for depression/anxiety just turn me into a boring zombie. For the anxiety specifically though I take valium. So perhaps she needs a medication change if the one she is on is not helping, not to mention if its not helping there is a good chance it could be making her worse which she may not be able to communicate to you. Did she seem to get any worse after starting that medication?

And her school keeps her in a room alone all day to listen to headphones all day with no school work or activities to do every day...till she gets sent home? That would do weird things to anyone psychologically, does she even get recess or is she literally in there all day aside from using the bathroom? That definitely needs to be addressed...if you haven't already because that's not any way to deal with her anxiety.

Again, I'm so, so sorry this is happening to both of you. Hugs.

When I came to WrongPlanet, DS was in a not dissimilar state of anxiety/anger/fear etc. (He was mostly able to leave the house, but didn't have physiological symptoms to manage on top of everything else.) We tried lots of stuff but I think the thing that really finally worked was time and development.

I know how you feel - know that you are doing everything you can for your daughter, and even though nothing seems to work, I think on some level she knows and appreciates that even if she can't express it. I remember being entirely tied up in knots with worry over my son, to the point that it was hard to breathe.

I can also say - having been something like this as a teen myself, but without parents who cared enough to figure it out - I did get through it, too (and I did have both IBS and, once I hit puberty, endometriosis, though not as bad as your daughter.)

When I was her age, I spent most of my time sleeping - I'd come home from school, hit the bed without changing out of my uniform, have to be dragged out of bed for dinner, then I might possibly do homework or might watch TV but more likely I went back to bed and slept until morning when I had to be dragged out of bed again - often still in my school uniform which I didn't have the energy to change. Since I did homework on the floor in my room, I spent a lot of time lying with my face on the floor "drawing" in the carpet with my finger - I was so depressed that I couldn't even raise my head.

Some of this was about abusive parents and not neurology, but I do have a sense of how it's possible to just not have enough mental energy to get through a day. It's hard - I don't know what we can tell you at this point, other than seeing what your professionals say (maybe a second opinion?) and very gently trying to nudge her towards help...

And it sounds like your daughter could very much use some positives right now:

maybe a local board gaming group, which I understand is becoming a bigger thing,

maybe the alternate history website, kind of a political website but at a higher plane. Some profanity, especially in chat section but a lot better than most sites.

------

When I was struggling with OCD as a teenager, and probably every case is different, if I could get out of the house, I could feel better for a while. I still needed to decompress and have alone time when I came back.

http://www.naturalhealthadvisory.com/da ... -yourself/

Please familiarise yourself with Gaba deficiency signs and symptoms as it affects a significant number of children on the spectrum. All parents of ASD children need to know about this. The research is pretty solid.

I'm skeptical of research reports that don't link the studies themselves. It's not too hard to track down the source studies - my personal criterion for a "good" study is whether or not there is bias from the funding source, a large sample size, and if there are good scientific controls like preventing placebo effect, etc Here is the study your site probably references, it has a sample size of 13 people and was paid for by a Japanese manufacturer of supplements, including GABA: http://www.ncbi.nlm.nih.gov/pubmed/16971751 (they did, at least, control for placebo, but there isn't enough information here to be conclusive.)

GABA is a neurotransmitter (meaning, we all have it) which is involved in inhibition and stress - so yes, it's not unreasonable to assume it is part of the issue. Many of the medications prescribed for anxiety, like anticonvulsants and drugs like Ativan, Valium, etc. affect GABA in the brain.

That said, there is a study showing that the body prefers to manufacture its own GABA, and oral supplementation doesn't affect GABA levels. Here's an animal study that tracked oral supplementation with radioactive isotopes that shows the supplement doesn't cross the blood-brain barrier: http://www.sciencedirect.com/science/ar ... 087190013X

There is definitely a role that chemistry plays in helping people on the spectrum with various different symptoms - but it is really important, considering how delicate our brain chemistry is - particularly as children - to make sure that interventions are well-tested and will do no harm. I am uncomfortable with remedies that don't have good science behind them - the stakes are very high.

I agree with you on the science behind supplements.

I emailed the GI Doc and told him we'd like to wean off this med and possibly try another or just use some pain meds in the meanwhile. He replied that he's now like to run more tests. Stool and possibly scope. Don't know why he waited this long to do that, perhaps he was trying to flush out a psychological cause for the pain, which makes me a bit leery of his methods. She was taking 25 mg of the meds and I stepped her down to 20 mg per day last Wednesday night. This Wednesday I will step her down to 15-I am doing this without the GI Doc's blessing.

Meanwhile, my daughter had a panic attack last Thursday and actually calmed herself down. Really amazing progress with that, as she had not been able to do that in the past. She escalated herself into that attack because we had to leave the house to go somewhere and she was having a lot of anticipatory anxiety about that. She escalated, had about 10-15 minutes of attack, then calmed down with a fidget. I didn't think there was any way we were going to get out of the house that day but we did, and I see that as progress.

She has been eating a little better. And yesterday was a good day as well. It is notable that last week I met with a possible coop tutor/teacher and told Grace next year we would probably homeschool and she did not need to worry or even think about having to go back to the school. So that may be helping her anxiety levels.

All this makes for a pretty good Mother's Day.

FANTASTIC! Congratulations, that's no small thing! Happy mother's day!

I agree with your suspicions about the doctor - are you able to get a second opinion? It's not like people with mental health issues don't have physical health issues as well - you would think the order would be to rule out physical issues BEFORE mental/neurological issues, since they're so much easier to treat! Grrr.