Hi! Out of my mind, thanks! - Page 4

[williamsmommy2002]

Ok then, I would try to find the biggest triggers. Hungry, tired, transition, change in plans, sensory stimulation(or lack thereof), difficulty with communiction, difficulty with social situations or even being bored. Then I would work on eliminating that trigger. Then I would ask at school or call local agencies and try to get help for you and your daughter. I know how hard and frustrating it can be to have an extremely spirited child. I think you do want to do what is right for your daughter.

[blessed]

Originally Posted by indiegirl

I felt like the milk/cereal issue was less about soggy food and more about her perseverating on the given topic. It could have just as easily been about the clothes she picked out that day or about our plans for the rest of the day...

I really hope you are able to successfully find a new way of dealing with this when it happens. The methods you're using now seem to be failing spectacularly, and I think at great cost to your daughter's well being and to your relationship with her .

[crl]

I just wanted to comment a bit on the milk/cereal sensory thing. My kid can be completely fine with tags in his clothes, for months. Then, seemingly out of no where, he has a fit about a tag. It seems like if he is under stress from another source, the sensory thing pops back up. I hate cutting the tags out of his clothes because then I lose track of what size he's in and I don't know what size to buy when he needs more clothes/grows out of some. Sometimes I foolishly get stuck on that. But really, what I need to do is believe him and cut the stupid tag out.

In general, for my kid increased meltdowns seem to be either related to increased anxiety (change-related often) or unmet sensory needs. For us, extra time at the park and playing squish can help head things off.

My advice, from a completely non-expert person who is not in your house (so feel free to ignore it), is to find a good occupational therapist to help with the sensory issues. Also, I've drawn a few lines in the sand that others would not have and I feel okay with that so I'm not going to try to tell you not to do that. But I do think it is really important to figure out which ones are worth drawing. For me, I have tried to focus on safety and on things that interfere with daily living. And I try to pick my battles when DS and I both have a few reserves to fight them--so not right in the middle of other changes or illness.

I hope this is a little bit helpful to you.

[WuWei]

Edited out so as not to sidetrack this thread.

Pat

[blessed]

Not so much judging as just reinforcing what *I* perceive as the seriousness of this situation.

I don't agree with OP that this is just some trivial disagreement over milk that everyone is overinterpreting, and that we will all sit back and nod in agreement once she has a chance to make the circumstances around the milk issue more clear. I'm saddened and concerned that this approach is causing serious injury to their relationship and to the child's psyche.

It's hard to work on fixing something if you're stuck on defending away the problem in the first place.

[williamsmommy2002]

Originally Posted by blessed

Not so much judging as just reinforcing what *I* perceive as the seriousness of this situation.

I don't agree with OP that this is just some trivial disagreement over milk that everyone is overinterpreting, and that we will all sit back and nod in agreement once she has a chance to make the circumstances around the milk issue more clear. I'm saddened and concerned that this approach is causing serious injury to their relationship and to the child's psyche.

It's hard to work on fixing something if you're stuck on defending away the problem in the first place.

I do agree with you on this. However I don't think this mother is going to learn how to deal with her child by us telling her how wrong she is over and over. Many of us revert to the way we were parented and need help doing it any other way. This is really true under stressful situations. I have done a lot to get past this issue in my life and my dh is still working on it. We get very angry when we are told that our kids just need more discipline when we know that will backfire anyway. I see this issue as her thinking that that is part of the issue. She doesn't understand how to deal with a ASC child and is asking for help. I agree that it is taking her a bit to get the bigger picture but she was also attacked pretty early on. Granted I didn't see the video so I don't know the full extent of what happened. I just don't think it is fair to just tell her she is doing very wrong and tell her that her dd needs OT or sensory stimulation. I think this goes much deeper than this child having some unanswered sensory needs.

[gaialice]

Originally Posted by indiegirl

Your question about the cereal/milk is a good one. I didn't mention this before, but what happened in the past with the milk is that the kids would ask for the whole cereal-with-no-milk deal and I'd do it, and then they'd eat half as much cereal, not touch the milk and then not be full enough an hour later. Plus, we've just wasted a ton of food. When they eat cereal with milk they eat the amount that fills them and tend to carry that energy with them throughout the morning.

Now, I understand your logic, but I was just thinking:
1) maybe your kids like starting off with a very light breakfast, then have a more substantial breakfast later on. Could this be accomodated in your routine?
2) Why are cereals that they have not eaten, and in which they have not poured any milk, wasted? I am sorry, but I cannot understand why you cannot put them back in the box?

Originally Posted by indiegirl

In the third video, she talks about needing a hug. She will often use me as a weapon, use hugging (or nursing, when we nursed) as in, "Nurse me or ELSE!" or "I need a hug NOW or ELSE!" I have to tell you that I often feel violated by this. I tell her I'd be happy to hug her when she can ask me kindly and calms down.

To repeat my humble playful parenting ideas, how does she react to humour? Like "DD, I need you to stand on your head -- OR ELSE"? "DD I need you to put your head in the oven OR ELSE?" For maximum giggling effect, you can show her exactly how! You know I understand totally that forcing yourself to hug your dd if you feel violated is not good. On many levels not good (like among other things, you should not be teaching her that it is OK to just suck it up and let people violate you "just so that there is peace"). So, why not make light of the situation with something just totally absurd, instead? One of my dds reacts very very well to humour -- the other less so, but she winds up joining in the giggling once it has started.

In fact, these things may seem too stupid, or grotesque, but believe me when you have laughter and humour, your family's atmosphere will just change and it is not very difficult to do... I haven't seen the videos, though, so perhaps there is something that I am missing

[savithny]

Originally Posted by indiegirl

The hug issue: I have no problem with hugging as means to calm down, even when she's physically out of control. I feel violated when she uses the hugging as an "either or" choice. The best I can describe it is that she uses it as a weapon. I have real issues with using my body as a bartering tool or as a weapon but I'm game to give it a try as a means to calming down the storm before it starts, kwim? I'm totally willing to have it be in her toolbox of calming mechanisms and self-advocacy. I have a harder time with it as a directive, for lack of a better word.

Okay, again, I'm speaking from my own experience, which may not line up with yours exactly....

But the problem with saying that you're willing to use the hug to calm the storm before it starts is..... before the storm starts, the hug isn't needed.

I mean its *needed* in the sense that all children need hugs.

But she's not going to demand a hug before the storm starts, because its not until she's in the midst of the storm that she realizes she needs it, KWIM?

Its like you're saying, "I'll give her some toilet paper *before* she goes to the bathroom, but once she's there, I think screaming for toilet paper to clean herself is rude and demanding." But she didn't know there wasn't anyTP until she was already in the bathroom, and at that point, you really need to just hand the TP over so she can get herself clean, and then afterwards, you can have the discussion about "Honey, when you see that there's nothing on the roll, go get some before you sit down."

My kid just didn't have the self-awareness to know that he was on the brink of meltdown until he was older than your DD. Now, at 7, you can see him sometimes stop, and check himself. He'll literally give himself a little shake, and then often he'll go for a comfort object, or switch to coming at me for a hug without going all the way into meltdown mode. But that took a lot of time, experience, and work on both our parts.

[FlowerMomma]

My daughter is going to be 5 in March and when I read your post I could totally relate. It sounds like what I deal with exactly. In fact the other day I got out my camera to video also. I feel like I need proof to show others what I go through at home. No one seems to understand the intensity of it. It's not just a temper tantrum, I am so drained and feel emotionally beat up most of the time, it's hard to function.

Originally Posted by amcal

First, I have to say that I am not familiar with what you are dealing with. But, one thing that struck me was the struggle over milk in the cereal. Personally, and again, I don't deal with what you do, but I'd probably just let her have the cereal or other food choices and avoid the conflict. Clearly, if she wants snickers and M&Ms for dinner, that's not an option but if the struggle is cereal with or without milk, I'd let her have it without to avoid the conflict.

I don't know if you find this, but in my expieriance, if my DD is in one of these moods then we are just going to have the blowup no matter what I give in too. She will just blowup over the next issue or sometimes seemingly nothing at all. It's so frustrating and I feel like I have no control over anything.

[/QUOTE] The same thing with the hug. I know she's demanding a hug but it seems she's demanding it for a reason. Does she need your arms around her to help her calm down? Does she need you to take her to a quiet place so she can get away from stimulation and just calm down wrapped in your arms? I don't know - again, I don't deal with what you do and I can't imagine what you must be going through so please don't take it as a judgement but it just seems like she needs you to hold her when she's asking for a hug.[/QUOTE]

My daughter also uses this kind of behaivor and it seems very manipulative to me, She has been fighting, screaming, yelling and calling me names, then when I send her to time out she starts crying and screaming that she needs a hug. By this point i am so angry and frustrated I really am not feeling like giving her a hug, so I do the same thing and tell her she has to calm down first. I just don't want to reward her for such horrible behaivor. Maybe I should, it just doesn't seem right. I never know how I should handle her and all the expert advice in the world doesn't seem to help. hugs to you. I feel your pain.

[gaialice]

Originally Posted by FlowerMomma

I don't know if you find this, but in my expieriance, if my DD is in one of these moods then we are just going to have the blowup no matter what I give in too. She will just blowup over the next issue or sometimes seemingly nothing at all.

That is very true, unless, after you have "given in" on an issue that was not so important, you yourself really let go of it and move on and really connect to your dc in his or her "love language" -- whichever that may be.

[sbgrace]

Originally Posted by FlowerMomma

I don't know if you find this, but in my experiance, if my DD is in one of these moods then we are just going to have the blowup no matter what I give in too. She will just blowup over the next issue or sometimes seemingly nothing at all. It's so frustrating and I feel like I have no control over anything.

This is my experience too.

Originally Posted by gaialice

That is very true, unless, after you have "given in" on an issue that was not so important, you yourself really let go of it and move on and really connect to your dc in his or her "love language" -- whichever that may be.

gaialice, your response may be true for your child our your experience. There is no possible way you can say that is true for every single child. The generalization is "yes, if it doesn't work though it is because you aren't connecting with/loving your child the way he or she needs" Blech. Maybe you didn't mean it that way. Hint: there may be some congitive differences at play here too.

Actually, the more I read your responses...am I correct in assuming your children aren't even on the autism spectrum. Frankly, I know you are trying to help and I get the playful parenting thing (we do that here) but some of your playful suggestions would send some spectrum or other kids over the edge I think. And might not help if a child thinks very literally/takes everything at face value and doesn't get it. And is resistant to change and put off by surprises. Some spectrum kids don't like that stuff. It is upsetting to me that you can be so sure of your thoughts when you don't have a child that shares the diagnosis of the OP's, right? I would say be very careful about generalizing your experience to everyone else.

For Andrew it isn't really about what he's making it about. Giving in doesn't even help 95% of the time. To me these days (I hear you on the 30 fits) are about something else being out of sorts with my son. He's just volatile. And he's got very little emotional regulation. And it wears on you. Big time. So big hugs from me.

I didn't see the original videos but reading this thread has made me sad. I commend you OP that you keep coming back for help when, especially early on, I feel you were sort of attacked. Side note: lots and lots of parents on this board have posted videos of their kids looking for help. I see nothing wrong with that. And in fact if I had a video of the day my son came in, demanded a cracker, I handed him one, he said no he didn't want it, I took it back and asked if he wanted something else and he said he did want it, I said ok as I handed it to him and he then he threw it down and had a full on meltdown for an hour...I'd post it looking for help too. I've consulted with autism therapists, multiple OT's, doctors, and every important person in my son's life. If there is some unmet need or love language that we're missing with him no one else has been able to pick up on it either. Anyway, seeing video of a kiddo (which can later be unposted of course) can make things clearer.

I wish I had seen the video.

I'm reading the Explosive Child book myself. And I'm working on trying to track triggers in my son (which is hard) to figure out why some days are so rough and other days are ok. I know for us sleep and going too long without food are definite triggers so I work hard to keep him rested (even using melatonin when needed to catch up) and fed every 2.5 hours.

Oh, we feed Andrew applesauce or pearsauce when he first wakes up. That gets his blood sugar up long enough for me to make breakfast. Even as long as it takes to get cereal together and all is too long here. Not every day but many days we have a meltdown over something small if he doesn't get that food first thing. If he won't eat the applesauce (which happens if he's already past that point for whatever reason) I syringe juice. It makes a huge difference in the morning. And it seems like the morning, if it is a really bad, makes for a bad rest of the day sometimes. If you were to check your daughter's blood sugar when she wakes up you might find she runs really low. Or even if she doesn't she may be super sensitive to it.

I've discovered that mentally engaging him (not about the issue at hand but about something else) can snap him out of heading to meltdown if I catch him fast enough. He gets stuck mentally and couple that with volatility; it's a rotten combo. He can fall down (not getting hurt) and instantly go to meltdown. Once he's melting down, if I didn't catch it fast enough, the more I engage the worse and longer it is.

[fluttermama]

Kiddos on the spectrum can be exhausting, mentally, emotionally, and physically. When you are in those situations and needing to stay calm 24/7, keep the house together, maybe deal with other children/work/school/spouse, desperately wanting some sort of peace, it's really hard to think or do anything except work to *stop* the craziness. I can't see the video, but if you are looking for advice or support or just want to vent, know that I am here. I have two kiddos on the spectrum and we're at a good place right now, but I think age five was one of the worst times for me and for us as a family. It does get better, mama. ((((hugs))))))

One thought to add...I think one of the videos was about cereal and milk? Kiddos and adults on the spectrum often need their food separate....no casseroles, cereal/milk, soup combinations...those things can be difficult.

[Kodama]

Reading this has made me very sad for you and your daughter.

I feel sad for you because you sound so frustrated and at your wits end. I feel sad for your daughter because she must feel so misunderstood.

Please do not be insulted by this, but this sounds like something that is beyond a parent's ability to handle all by themself. I highly encourage you to seek out some professional support for you and her beyond the internet even though our little slice of heaven on MDC is a great place to start looking. Hopefully you can learn the right tools for you and her and start healing and enjoying life again as a family.

[williamsmommy2002]

Originally Posted by gaialice

To repeat my humble playful parenting ideas, how does she react to humour? Like "DD, I need you to stand on your head -- OR ELSE"? "DD I need you to put your head in the oven OR ELSE?" For maximum giggling effect, you can show her exactly how! You know I understand totally that forcing yourself to hug your dd if you feel violated is not good. On many levels not good (like among other things, you should not be teaching her that it is OK to just suck it up and let people violate you "just so that there is peace"). So, why not make light of the situation with something just totally absurd, instead? One of my dds reacts very very well to humour -- the other less so, but she winds up joining in the giggling once it has started.

I'm sorry but most kids on the spectrum aren't going to snap out of it if you joke with them. My oldest would in fact meltdown even more. Parenting advice that works on typically developing kids does not work with a lot of spectrum kids. If my child is going to meltdown, they are going to meltdown. There are other things we are working on to not get to that point in the first place and that is how we deal with this. I still wouldn't consider us successful in this whole venture. Parenting a spectrum child can be very stressful and emotionally/physically draining. And yes I know not all spectrum kids are like that. My youngest is very mellow most of the time.

[RedOakMomma]

Originally Posted by sbgrace

gaialice, your response may be true for your child our your experience. There is no possible way you can say that is true for every single child.

To me these days (I hear you on the 30 fits) are about something else being out of sorts with my son. He's just volatile. And he's got very little emotional regulation. And it wears on you. Big time. So big hugs from me.

What she said. Especially the bolded part.

After I wrote last night, I was thinking about it. Have you gotten out (or looked at online) the list of symptomatic behaviors that go along with your child's diagnosis? I know for me, when I look at it, a lot of the weight and frustration are lifted. It's a reminder of "oh, that's right, this is just the way his brain works, and there's not a whole lot I can do about it." Instead, I need to find ways of working with it, and working around it. That takes patience and creativity and a TON of emotional energy (none of which are in high supply in our house recently, with all the meltdowns), but at least the list of autism-related behaviors makes me feel less frustrated with ds1. It's not his fault.

I don't know why that helps me, but it does. Might it help you, too? Especially when the 30+ meltdowns a day are really wearing you out?

Many, many s. This is a weird mix of responders, and some odd sidetracks and bickering in this thread--but please know that there are A LOT of people in the SN forum that are going through very similar lives and experiences...and it's a wonderfully supportive forum.

[wonderwahine]

why fight over milk? ds and I only eat dry cereal, its no big deal. And as far as not eating enough when they dont have milk, so what? so they need a snack later..... who cares? milk is expensive and if its not the good stuff, bad for you.

I know with only my 2 yr old, i would NEVER fight over food a certain way if it ment he would actually EAT!! Some of us don't have the luxury of our spectrum kiddos actually eating anything, milk or no milk. so if ds would only eat cereal without milk one day, then why not?

Theres just so much more to fight over with kids like this, like diaper changes and bath time etc. I can't understand fighting over food

[savithny]

Originally Posted by williamsmommy2002

I'm sorry but most kids on the spectrum aren't going to snap out of it if you joke with them. My oldest would in fact meltdown even more. Parenting advice that works on typically developing kids does not work with a lot of spectrum kids. If my child is going to meltdown, they are going to meltdown.

I was just thinking this too. My kid is not on the spectrum (or if he is, he's either at the ultraviolet or the infrared end?). His sensory issues and meltdowns never "rose to the level of disability" (in ADA terminology), but the bolded is so, so true for my DS too. It's also true of his sister, who in all other ways is very, very different from him (calm, rational, no tantrums).

If you try to turn something into a joke with my DS during a tantrum, he'd go from screaming like in the video to screaming so loudly you'd think he'd barf or pop blood vessels in his eyes. I think, when he was feeling so awful, to make a joke out of his *pain* was just seen as -- really mean. "STOP JOKING!" he'd scream, "YOU'RE TEASING ME!!"

Even now, he and his sister both respond to turning things into a joke, especially if you use the "take something silly seriously or serious silly-ly" humor technique, with very, very, negative responses. "That's teasing," DS told me once, "I don't like it very much."

[Kristine233]

Originally Posted by Brigianna

I understand what you're saying, but I don't quite agree. I would mention that (many of us believe) ASCs and ASC traits are genetic. So if a child has ASC or sensory issues, it's entirely possible and perhaps likely that the mom may have some sensory issues as well. And I'm really reluctant to ascribe symbolic or psychological significance to someone's sensory seeking/avoiding. I know that many of my sensory issues have been intensified by experiences and psychological issues. But it's still fairly corporal at base.

We tend to assume that issues with seeking or avoiding physical contact with other humans is automatically emotional rather than physical, but this is often not the case. Personal counseling is (IMO) a *very bad idea* for dealing with sensory issues. When I was a kid, one of my doctors was fascinated by the fact that I bribed my brother to beat me up. He had this whole theory all worked out about my misplaced attachment and self esteem and all this other stuff, but neglected the most obvious explanation: I enjoyed it. Sometimes a sensory issue is just a sensory issue, you know?

I had to totally laugh at this... When I was 9 I used to "glue" my hands... like cover them in glue and then peel it off when they dried. It was such a cool sensation. My teachers were disturbed by this and everyone was concerned. It started the first of many counseling appointments set by my parents and school. I was a bizarre child by normal standards, I totally admit it, but I was also a cool quirky child. hehe. My Ds is my little carbon copy, if he wants to "glue" his hands I'll help him. Right now the kids like to "tape" themselves. *shrug*

To the OP: I chose my battles wisely. Cereal without milk, no matter the reason, wouldn't be worth it to me. So thats not a battle I'd chose, so I have no help there. I chose battles based on 2 things... will the action hurt him or will it hurt others/or others' property? Everything else is a gray area. We still manage to set rules, but we just enforce them differently than others would.

[Brigianna]

Originally Posted by Kristine233

I had to totally laugh at this... When I was 9 I used to "glue" my hands... like cover them in glue and then peel it off when they dried. It was such a cool sensation. My teachers were disturbed by this and everyone was concerned. It started the first of many counseling appointments set by my parents and school. I was a bizarre child by normal standards, I totally admit it, but I was also a cool quirky child. hehe. My Ds is my little carbon copy, if he wants to "glue" his hands I'll help him. Right now the kids like to "tape" themselves. *shrug*

To the OP: I chose my battles wisely. Cereal without milk, no matter the reason, wouldn't be worth it to me. So thats not a battle I'd chose, so I have no help there. I chose battles based on 2 things... will the action hurt him or will it hurt others/or others' property? Everything else is a gray area. We still manage to set rules, but we just enforce them differently than others would.

Glue on your hands? That's just weird. I don't know that I could associate with someone who did that.



I used melted candle wax.

[Brigianna]

On a more serious note...

I love MDC. I love Mothering Magazine. One of the things I love about both of these is the emphasis on parenting in a way that is mindful and respectful of the child, taking the child's point of view into account, viewing the child's concerns as equally valid to the parent's concerns. This is a different philosophy of relating to the children than the mainstream, and that, in my opinion, makes it special.

To an extent, this could seem to some as judgmental or unsupportive. I don't think it is. Saying "how about looking at this from the child's point of view" is not meant to be condemnatory of the parents. It is meant to offer a perspective that is seldom-recognized in the world at large. For most of us, it's been a while since we were children, and none of us have ever been *our* children. I am grateful for opportunities to see the ways that my children's perspectives may be different from mine, and the ways that understanding these perspectives can improve our shared lives.

I've never been of the opinion that being kind and supportive means never expressing a different point of view. I think we need different points of view, especially as pertaining to small powerless people who may not have the ability to advocate for themselves.