Have you/your kids gone threw this to?

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aurea
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03 Jun 2011, 3:47 pm

Last night J (my 12 yr old) heard me talking on the phone with my brother about J's tooth paste issues. He heard me say I think it may be sensory issues.
This made J upset, he very loudly stated "I don't have sensory issues, why do you say I have sensory issues?"
I explained to him why I thought he had sensory issues, I repeated back to him some of the past things he had said to me about tooth brushing. He denied having said that foaming tooth paste makes him feel sick.
We talked about other things like crowds, he has complained about noise volume, smells, lights etc etc. He denies all of it or has his own reasoning for it. We talked about how he wont wear certain clothes because his skin feels itchy. In the end, I didn't know what to say, so I apologized to him for getting it all wrong, told him "ok you mustn't have sensory issues, no more complaining about your clothes and you can start using toothpaste again and brushing properly or there will be consequences.".

This then led to him crying and telling me he was sorry for making me mad, I told him I wasn't mad, I was just trying to help. If he doesn't need or want my help that's great.

He then tells me that I say he can't do stuff, and this makes him feel bad about himself. (must admit this one made me feel sick, gawd I don't want to be the one making him feel bad about himself). I asked him what stuff was he talking about because I think he is very clever. He couldn't tell me what stuff it is that I said he couldn't do. I did say to him, the only thing that I have said he couldn't do was his homework, and if it's making him feel bad by my saying he couldn't do it then I was truely sorry, and he needs to start doing it then. I then went on to say, that I think he is clever enough to do the work, but I only told school that he couldn't do it because it causes him to much stress. He tells me he is not clever at all.
Talking about the home work led to the use of the word "meltdowns" he told me that I keep saying he has meltdowns about his homework, and he says he doesn't have meltdowns ever. I described to him what had happened the last time he'd brought homework home and what he'd done, and I said maybe meltdown isn't the best word, his are more like an internal shut down or self directed meltdown. He looked at me quizzically and said "Oh, you do get it. I thought that you were saying that I get angry and shout and scream like C does. Yes, when I'm upset I wanna hurt myself because I think I upset everyone else and I don't want to do that. I think I did something wrong". I explained to him that I know he doesn't have the external angry shouting screaming rages that his friend C has, when i use the word meltdown, I use it because I see it as his system is over loaded and stressed and he can't take anything more in and he needs to release some of the pressure. I know that his meltdowns or shutdowns or what ever he wants to call them are all internal and directed at being angry and upset with himself. It has been very rare for him to hit out at anyone else, what he used to do but hasn't done in a little while is bang his head on the wall, smack himself in the head and try to harm himself. We talked about the use of the word "meltdown" for a little while, he says he pictured meltdown as being like a nuclear reactor going off and causing maximum external chaos and destruction which is similar to what his friend C does. I told him what I thought meltdowns were and that I believed they had several different meanings but ultimately , if you compared your self to a computer it was like a system over load. He seamed satisfied with this answer.
He then told me that he thinks I think he is a let down and defective in some way. (I so badly wanted to cry, when he said this). I then tried to reassure him that I don't think he is defective at all. In fact I think he is bright, interesting, caring, kind,loyal and one of the funniest persons I have ever met, I am really proud of him I would never want any other child. I told him I love that he does think a little differently to other people, but that's not defective, that's unique. I then asked him to think of a pack of Pokemon cards, and how much does everyone want the rare Pokemon. He said yeah everyone wants the really rare ones because they have special abilities and there's not many of them. I said well you (J) and your brother are my rare Pokemon cards. I'm very proud of both of you and I'm really sorry if I made you feel bad, i only ever wanted to understand and help both you and your brother, but I am human and I make mistakes. If I ever do anything that makes you feel bad or that you don't agree with or like you are allowed to tell me, I can't fix it or stop it, if I don't know.
I don't know what to do now. I don't want J thinking that I think he is defective or incapable. I see him struggle with some things, like the tooth brushing, his severe aversion to a lot of clothes particularly air dried clothes, his anxiety in crowds, shopping centers and other strange settings. I see and feel the anxiety over the home work. These are just a few examples of where I see the struggles. What am I to do? I have tried to take the pressure off him, but now he seams to think that I think he can't do stuff. I'm tempted to just back off completely and make no allowances, but I don't want to set him up for failure or rub his nose in it.
He is obviously growing up and trying to be more independent which is fantastic.
What am I to do? I kind of feel like I'll be damned if I do and damned if I don't.

Please help. suggestions, advice, commiserations, aspie view points.


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youngest 12yrs =dx'ed ASD, ADHD,OCD,GAD and tourettes.


DW_a_mom
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05 Jun 2011, 4:04 am

Reminds me of the situation with my daughter (the probably not AS one). She can't STAND me talking about her, especially her weaknesses, and she really struggles with the concept of how one can be loved and accepted if they are not perfect (she's my perfectionist), to the point of taking any remark about an imperfect (to her) trait as basically a criticism.

Perhaps the thing to do, which I have not been successful at, is to not talk about them, or their struggles. Some kids seem to need to have that kept private; something they sort out alone in their heads, with input from us only when asked.


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Benbob
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05 Jun 2011, 6:11 am

I remember when I was a kid I hated people treating me like I was some kind of textbook social outcast. I think I took it as an insult being lumped into a category and treated as such (I even refused to watch children's television because I found it patronizing). Or maybe he is just tired of feeling different from the other kids.


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Annmaria
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05 Jun 2011, 7:15 am

Hi aurea

I/he goes threw this everyday, my son gets to a point where he treatens to commit sucide and this is on a daily basis. If he behaves in a way that might get me angry or challenging this is also constant, which I really try not to, he will then ask me if I hate him now, I reassure him that I dont over and over, this pattern is constant. He will mention on a number of occassion that he will kill himself, when he was younger he is 12 now he always wanted to die. He will tell me everyday that I hate from the minute he opens his eyes. He will also want to know how much I love him, which I reply bigger than anything in the world, he likes this but will also dismiss it.

If his mood gets really low, which hasnt happened for a while now thank god, I would have to take him to the local services. When he gets into this dark mood I am so scared, and he is on watch. He has told me that he thinks we would all be better off without him, that he causes to many problems and I would be happy to see him dead.

My heart is broken, he also thinks that I love everyone more than him, I know siblings go threw this, but no matter what I say, he still believes this.

What I think is that he feels because I am his mother, that I should know how he is feeling, whats upsetting him, I should be the one to fix it, while he has got a point, we all know I can try and make things better but I can't change everything.

School, homework is a nightmare.

He just wants everything to be the way he likes, doesnt understand why its not and why I cant make it happen.

Annmaria



draelynn
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06 Jun 2011, 11:22 pm

Nobody enjoys having their flaws pointed out.

If he is making comments or acting out in ways that you believe are sensory related - don't talk about sensory issues. Just have a conversation about what it feels like and why he feels the way he does. then drop it. If he doesn't want to talk about if- okay - you know where to find me if you do. I'd be glad to help if you want me too. Even if it is sensory related - so what - you'll still treat his difficulty the same way whether it has an official label or not. He's more than old enough to discuss different ways to handle his quirks with you when he is ready to address them.

I know I'd probably have a nuclear meltdown on someone if they picked apart every little quirk I had and tried to put into a neat little category. I'm sure they hear enough about what they are doing wrong in school - home is supposed to be the soft spot to land. ASD kids are different - so what? If we keep treating them as 'different' they are going to feel different. They are going to be looking for their own differences and be harder on themselves for not being able to change - because that is what everyone around expects. Being so overly self critical on a daily basis is a sure recipe for depression and anxiety.

So - he hates toothpaste. Okay, so do lots of people, thats why there are alternatives to foaming toothpaste. Perfectly 'normal' people have issues with this too. Itchy clothes - the same. It could be detergent, the dyes or perfumes in it, it could just be certain fabrics - whatever. Lots of people have issues with clothes. Air dried clothes ARE scratchy. Kids need to hear more about how other people share their differences. We have got to build their self esteem and pointing out flaws does not do that for anyone. If we blame every little thing on 'autism' they are very quickly going to learn to hate being autistic. Our kids are who they are. We need to start there first - supporting the kid - not the autism. If every conversation is centered around autism then it may be time to take a step back and reevaluate the approach.

My daughters after school routine involves the same questions every day. How was school - good. Sometimes it's - I don't want to talk about it. Both tell me alot about her mood and how to proceed. Good days we dig deeper. Sometimes we hit on something interesting, sometimes it just a plain boring day. She's getting the idea that we have no clue what she does all day and we want to know more. After school is homework time - we took 3 years to get to this routine. Snack and drink are waiting and homework begins. My daughter used to have meltdowns at homework time. Many of her issue revolved around a dip in blood sugar and the stress of her day. Setting up the homwork routine involved intense negotiations with a then 8 year old and an handshake agreement that this would be OUR new routine. We put it into action and enlisted the schools help to make sure she gets her afternoon snack in school to help combat the blood sugar dip. It took a few weeks of reminding her about our deal but she realized as soon as her homework was done, she could go disappear into her favorite game, tv show or whatever she wanted to unwind. And we let her. She gets as much alone time as she needs. Sometimes its the entire night. That's fine. We check in now and then - sneak a hug in there occassionally. Sometimes she'll come find us. It all works out. she has had precious few meltdowns in over a year.

Meltdowns are not always about overload - they can also be about running on empty energy reserves. It takes alot of mental energy to navigate the ordinary day. All those things normal people take for granted takes mental effort on our kids part. When they have too much going on, its like a computer freezing up becasue it doesn't have enough memory to continue running so many open windows. They need to shutdown some windows to free up the energy to keep at it. If you watch their behavior from this point of view - you can see these 'running on empty' meltdowns coming before they occur - and prevent them. Stims, personal interests, alone time, - my daughters new favorite, deep pressure using an exercise ball - all these things help a kid rebalance and regain or keep control. Trying to stop, limit or end these things is as good as guaranteeing meltdowns in the future. Much of what school interventions do is ask kids to eliminate their coping mechanisms and then they wonder why the meltdowns get worse...

At some point, we gotta let a kid be a kid. If my kid stims and talks incessantly about Pokemon - so be it. She's studied and mastered no less than eight games and can tell you stats for hundreds of Pokemon. That kind of skill will serve her well later in life when her interests grow up a bit. She is not a defective NT - she is a perfectly normal Aspie. She just needs permission to be who she is and not forced into a box that she isn't.



angelwife27
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07 Jun 2011, 1:38 pm

I agree with draelynn. It sounds like he is struggling with his "deficiencies" which tend to get pointed out by peers. My son was bullied at school because of his quirks and when he started middle school, especially grades 7-8, it got much worse. After one of his "meltdowns", I had a frank discussion with my son. I found out that he felt like everyone, including his parents, were always pointing out his faults. I felt horrible. We were riding him pretty hard at that point. I told him how much I love him just like he is and that his parents would always "have his back". I made sure that he knew we are always on his side and just want to help him. But I also told him that I needed to be able to talk about things with a support person. Parenting is not easy and all parents need support. I told him that I may complain about his behaviors or quirks, but that those were just things we needed to figure out how to deal with. If I need to vent or discuss something about him, I make sure I'm in another room where he won't overhear.

I made sure he was excused from all school Pep Rallies because they hurt his ears. I got the school to allow him to chew gum in class because it helps him concentrate. During gym class I made sure he could wear cotton sweat pants instead of the nylon/polyester shorts. We still cut the tags out of my son's clothes and he's 19 now. I think of these things as sensory issues but it's really just because my son is my son. We all have these types of issues, some people are just able to cope better. My NT teen son only wears cargo pants because of the way they fit his body.

So if your son does not like foaming toothpaste, get a different kind. Maybe try some travel sizes or ask the dentist for samples. But discuss this with your son first. Just explain that he needs to be able to comfortably brush his teeth and that the two of you need to work together to find something that will work for him. It may give him some sense of control if he is involved in finding solutions to some of these issues.



aurea
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07 Jun 2011, 3:50 pm

J and I have since had a talk regarding how he feels.
I think looking back at the whole situation, it blew up and was made much worse because I didn't know at the time, but he'd had a really bad day at school with a maths test that he just couldn't do, and he was starting swim lessons that night with a brand new swim instructor (his previous instructor had been with him through all his dx's and she was like family he'd had her for 5 years).

I'm not trying to make light or excuse my part in his feeling bad about himself at all, I just think everything else added to the whole situation.

J is always asked, "what can I do to help you?" I try to never assume anything or impose what I think he needs on him. I ask him first, can I speak with XXX and ask their advise, they may have a good idea that we haven't thought of? This time I didn't ask, my mistake.

Other peoples issues/difficulties are also talked about in front of J including my own, he just never seams to hear them. That's ok though I do get that.

After having spoken with J I get the impression that he simply thought "why would my mum want a child that isn't perfect". I have since told him again, no one is perfect, every one has things that they don't necessarily like about them selves, things that they find difficult, things that they'd like to change. I also explained to him that his difficulties simply have a name attached to them, that doesn't make him any more defective (using his word)than any one else.

J also thinks (as do most people at some stage in their life) that every one else has a better life than himself. He thinks people without aspergers can do anything and never have any worries. I'm trying really hard to get it across to him that no one is perfect, and every one worries about something at some stage. It's difficult though to get him to see this.

Thanks everyone who responded, I'll just keep plugging away.


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youngest 12yrs =dx'ed ASD, ADHD,OCD,GAD and tourettes.


fourbas
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17 Jun 2011, 6:16 pm

I don't really have any advice for you, but I can sure sympathize. My son is 18 now. When he was younger and would do something socially inappropriate, whether we told him or whether he figured it out on his own, his reply was always (in a loud voice) "I'm sorry, I'm sorry, I'm sorry, I'm sorry". Over and over and over. It broke my heart every time. Pointing out anything, made him feel like a total failure, and still does sometimes. I'm still torn between trying to take the opportunity to train him when he does something inappropriate and trying to preserve his self respect and dignity. Fortunately, he has excelled academically and he takes great pride in this. I think this has really preserved his self-respect. If he didn't have these academic successes to rely on, I'd hate to think what depths of depression he would be in. I've always tried to speak very plainly about his condition with him, so that he knows that he has these social areas in which he will face struggles. (Knowledge is power.) But it's a fine line to walk between hounding him all the time about every little thing and just letting him be who he is and learn on his own. I heard in a management training class at work, that you should always start with the negative and end with the positive. For example, if I say " You're really smart, BUT what you just did was wrong" The compliment at the beginning is completely wiped out with the BUT. I've tried to always follow a criticism with a positive encouragement. I guess time will tell if what I'm doing is helping or hurting.



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17 Jun 2011, 7:23 pm

I think most children with AS are acutely aware that they are different and it can be a stuggle existing in a world that is not designed for you. As an adult I've come to realize that most of my troubles with AS are only troubles in the context of an NT environment. Raising a child with AS is a bit like raising a fish out of water. The fish needs to be kept wet; this is seen as a disadvantage by those who are not fish (yet if it were a fish raising a human in the water, the human would need to be kept dry most of the time, which to a fish would be a big disadvantage). But if the fish didn't realize they were simply in the wrong environment, they grow up thinking they are a defective human....

When your son overhears you talk about his "issues" on the phone you reinforce the concept in his mind that he is a defective human, not a fish out of water. Let's pick a trait that is an intrinsic property of you....the way you sit perhaps. Let's say everyone notices this and for some reason, it matters to them and it's a big problem. People whisper about the way you sit but also deny anything is wrong. Your parents talk about how to fix this, and you overhear your mother talking about this problem to people on the phone. But what if it wasn't just the way you sit? What if they also had a problem with the way you stand. What if they had a problem with the way you interact with people? The fact that perhaps you really don't like cod liver oil when everyone else loves cod liver oil and doesn't understand why you hate it so much. Though no one has come right out and say it, you start to get the impression that everything about you is wrong, and then how do you feel about yourself?



draelynn
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17 Jun 2011, 9:56 pm

Chronos wrote:
I think most children with AS are acutely aware that they are different and it can be a stuggle existing in a world that is not designed for you. As an adult I've come to realize that most of my troubles with AS are only troubles in the context of an NT environment. Raising a child with AS is a bit like raising a fish out of water. The fish needs to be kept wet; this is seen as a disadvantage by those who are not fish (yet if it were a fish raising a human in the water, the human would need to be kept dry most of the time, which to a fish would be a big disadvantage). But if the fish didn't realize they were simply in the wrong environment, they grow up thinking they are a defective human....

When your son overhears you talk about his "issues" on the phone you reinforce the concept in his mind that he is a defective human, not a fish out of water. Let's pick a trait that is an intrinsic property of you....the way you sit perhaps. Let's say everyone notices this and for some reason, it matters to them and it's a big problem. People whisper about the way you sit but also deny anything is wrong. Your parents talk about how to fix this, and you overhear your mother talking about this problem to people on the phone. But what if it wasn't just the way you sit? What if they also had a problem with the way you stand. What if they had a problem with the way you interact with people? The fact that perhaps you really don't like cod liver oil when everyone else loves cod liver oil and doesn't understand why you hate it so much. Though no one has come right out and say it, you start to get the impression that everything about you is wrong, and then how do you feel about yourself?


Why does this make my think of Dr. Suess's Sneetches?