alma

We have two sons aged 9 and 6 who've never been to school. We parented conventionally til DS1 was about 4 when we were looking for alternatives to school, discovered unschooling, then radical unschooling and have never looked back.

The reason we were looking for alternatives at that time was that DS1 was clearly not ready to leave home. On the odd occasion we had tried a crèche (eg an hour at the gym) it had become clear he was desperately unhappy. He has a number of difficulties, and, by age 4, had acquired a few labels/dx.

We have tried to make home as safe a place as possible for him to be, as we believe his intense anxiety and stress is a barrier to learning and he has, in many ways, flourished. Part of helping him feel safe has been to do as he asks wrt his, to us, irrational fears. Let me give a couple of typical scenarios 1) I prepare one of the few foods he will eat. He will then wash his hands up to the elbows, sit down, and begin to eat (with his hands, not cutlery). Inadvertently, DH might pass by "too close", and DS will scream that he cannot now eat his food. Or 2) DS will ask for a drink and I will bring it to him. As he takes it he'll ask "Where did you get this glass?" (the cupboard) "Is it clean?" (yes, it's straight from the cupboard) "I want a glass from the back of the cupboard". These two examples are to do with food, but there are other issues to do with clothing, going to the toilet and more.

A couple of years ago we saw a family psychologist for while, but he didn't really feel he could help.

Recently DS2 has started to resist accommodating some of DS1's irrational (though rational to DS1) requests, and this has led to some intense meltdowns on the part of DS1.

We feel stuck between supporting DS1 in feeling safe at home and, at the same time, supporting DS2 to not have to be party to irrational rituals etc. DS1 is not happy with his "anxieties" as he calls them, and would like to change things, but we don't know how to help him. We have talked to him in a number of ways (magical thinking, primitive brain etc). We have the option of being referred to professionals again but are concerned that their methods are rooted in mainstream ideas, and we don't want to put ourselves in a position where we're clearly not coping but at the same time saying "Yes but …" to the offered support.

Does anyone have any ideas as to how we can help DS1 tackle these challenges?

Thanking you in advance,
Alison
DS1(9) and DS2(6)

Sandra Dodd

-=-Recently DS2 has started to resist accommodating some of DS1's irrational (though rational to DS1) requests, and this has led to some intense meltdowns on the part of DS1.-=-

When I stayed with Alison's family last summer for a while I had a really great time, but I didn't understand one of the older boy's rules at first, and that was if you touch fruit you have to wash your hands. I was getting a tour of the garden, from the boys, and I touched something to ask what it was, and he said I had to wash my hands now. I thought it was advice for my own future health, which was fine, and I figured I would wash my hands when I got back in the house, before I ate, but it was more than that. He wanted me to wash them (I think) before I touched anything else in his house.

Because I was company and a foreigner, he cut me some slack. :-)

I think maybe, Alison, you could talk to him about how he might take care of things when he's grown and has his own place. When he has his own kitchen, how will he keep track of which glasses are cleanest? In a curious way, I mean, to get him to analyze what he's thinking and why. If his own thoughts are spinning, he might not be analyzing which parts of them are the most important, and which parts of them are unreasonable in light of the realities of living with other people.

My oldest, Kirby, had the habit lots of oldest kids do of making the rules, calling the shots, and telling other kids how to play. When one of the other kids had a birthday, I would coach him to remember not to take over. When he went to someone else's house and he wasn't the one, single guest but there would be a group, I advised him to only manage a little bit of the activities, or to make suggestions he was willing to have ignored, so other kids could get a chance.

The phrase I used a couple of times (on the side, not in front of other kids) when he seemed particularly hyper and overly controlling was "Don't breathe more than your share of the air."

Maybe you could tell him he's been controlling his brother for six years, and how would he feel if his brother got to make all the decisions for the next six years? Maybe a long discussion, maybe just that one question. It might help him to think about it.

He's getting old enough to get his own food and to wash his own glasses. Maybe, at least sometimes, saying "I don't know how clean it is. Do you want to wash it to make sure?" would help. Maybe he's controlled you long enough, too. I don't suggest to stop immediately, but to gradually move toward making his preferences his own problem and not so much the whole family's. He might not feel so strongly about it if he has to get up and do the work himself. Or maybe he's not really thinking about how much others have done to accommodate him.

If he were balking, maybe you could say that you really don't mind giving him the safe haven of home, and the privacy and special environment that can be (reminding him school wouldn't allow for him making so many rules, and really wouldn't make a move to try to get the other kids or even the teacher to follow them), but that you're not willing to sacrifice giving his brother a home environment in which he, too, can make choices and live in the ways he would like to.

Your oldest boy doesn't get to tell everyone else in the family how to be, act, eat, wash, etc. You did him a favor while he was too young to do those things, but he's older now, and the situation could potentially start to be amended.

Maybe 'the scientific method' would help too. He could experiment with something and see how he handles bending one of his own rules. Or maybe ask him to explain the why of one thing or another, and in his analysis of why he wants this or that, he might start to find ways to untangle what he's created.

My cousin (who lived with us) used to "have to" walk back home the say way she went, or she said she would "tangle her string." I wanted to walk to town one way, and home another, or at least on another side of the street, but she had to go on the same side of each tree or bush, cross the street in the same place we had before, etc., for a couple of years. It wasn't fun for me.

Sandra

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BRIAN POLIKOWSKY

When MD was 3 years old he would meltdown when people would touch his toys, not always and not with everyone or every toy.
I had to them wipe his toy and he would be OK.
He was really particular about wiping his toys clean or not letting us touch them sometimes.

Then at 6 he went  was into washing his hands. He washed them so many times during the day and for longer and longer, that they got chapped them they started cracking and bleeding. I had a very mild soap for him and a moisturizer cream he used but still they got really bad in the dry winter.
He just , on his own, outgrew his anxiety I think.

I did respect them but what I did not do is let it rule others in the house.
If he wanted to wash his hands every half an hour it was fine but he could not make me or his sister wash our hands just because he was washing his.
I never complained, or said anything negative about it. I did make him see that washing so much was what made it bleed and got him mild soap and moisturizer ( on in the bathroom one in his computer desk) I also kept a hand sanitizer in my bad and in the car.

 
Alex Polikowsky

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BRIAN POLIKOWSKY

"I did make him see that washing so much"

that did not sound really well. I meant I explained to him how and why washing his hands so much and so often were making them dry out and bleed.
Alex


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Bun

Hi - When my son Li was younger, he used to want or need specific things done or not done so that he felt comfortable and at ease. When we honored and respected his wishes that he wanted and needed things to be done differently from others, I think he truly felt understood. Feeling understood and respected might have been a stepping stone in becoming more comfortable with some things that most others felt at ease with.

ie. I recall explaining aloud to his sisters(one older and one younger) that we needed to be quiet so Li could use the bathroom - he had a few things he always had to do before using the bathroom and needing absolute silence was one of them. It was tricky though as his younger sister was only about one year old at the time and very young children can't always be quiet for periods of time. Plus, he wanted me to be nearby. But...I tried. I tried to stay close and quiet. I explained to his sisters within earshot of him how important is was to be as quiet and respectful as we could. We did this every day. Sometimes more than once. I noticed a change in him after he heard me explaining this to his sisters - maybe because he realized we were making an effort and we did care and he and his needs were important.

Things didn't change in a short period of time. It took years. We gave him the space and time he needed to deal with whatever it was and I think because we took him seriously, he didn't feel like he was being judged or that he should be doing or not doing something else. We didn't handle this perfectly all the time. But the more we did, the better we all felt and and over time (sometimes a long period of time), he grew and changed and got more comfortable and sometimes overcame challenging things.

Laurie

Chris Sanders

Zoe (almost 14) started having intense anxiety when she was eight years old. Her worries interfered with her being able to do the things she wanted to do. She went from being an extremely social little girl involved in many, many clubs and activities to being almost homebound. She also got chapped hands, had trouble sleeping, and requested accommodation by her family for her many peculiar rituals and reassurance from her worries.

Over time her dad and I were able to sort out what was going on and by accommodating her whenever we could, we were able to gain her trust that we would do what needed to be done for her to feel safe. We tried to never force her to go anywhere she felt uncomfortable about, we often took two vehicles to family outings so that if she suddenly decided she needed to leave, one of us could take her home while the rest of the family could continue. We didn't take any family vacations at the peak of her anxiety (for about two years.) Knowing that we were listening to her needs and would take her requests seriously, she began to relax some -- to not always be in a heightened state of alert and ready to fight or fly. Once she was able to relax, she was easier to reason with and we talked about her worries -- what they were and how they made her feel physically. She told me that when she touched something that her brain told her it would contaminate her hands and that her hands had the physical sensation of being cold, until she washed them. She also told me that she didn't like having so many worries and wished she could make them go away.

We tried to accommodate her as best we could but we were also cognizant that her worries shouldn't impose on her brother's life if we could avoid it. Fortunately, being an older sibling, he was often understanding and sweetly accommodating to her but there were times when we felt we needed to step in and help her deal with her anxieties while letting her brother continue with whatever it was he was wanting to do.

One technique that she used to help reduce hand chapping, was to only wash the palms of her hands. This worked only when she felt it was a minor contamination. If she used the bathroom or touched something particularly disturbing (sitting on a strange floor and putting her hands down where lots of people have walked for instance) she washed her entire hands and up the arms a ways. We used Lansinoh - a medical grade lanolin made for breastfeeding mothers - with white cotton gloves at night, to help her hands heal.

I also bought this book: http://www.amazon.com/What-When-You-Worry-Much/dp/1591473144/ref=sr_1_1?s=books&ie=UTF8&qid=1318511113&sr=1-1 and we read it together and she did some of the exercises in it and practiced some of the techniques for gaining control over her worries. Rarely, but still on occasion, I coach her through these techniques when she gets particularly anxious. The book sits out where she can easily find it.

Over time, as she has matured and with our patience and understanding, she seemed to gradually grow out of a lot of her worries. She now enjoys lots of socializing and activities like dance and art classes and drama. She does still have a tendency to worry but her life is not dominated by her them. We've also learned that for her there is a direct correlation between between being hungry or overtired and increased worrying for her so we try to pay careful attention to making sure she's got food available and while she has autonomy over her sleeping habits, we do talk with her about whether or not she's been getting enough sleep, especially when she's more anxious.

Chris

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BRIAN POLIKOWSKY

Those were great ideas for hand chapping Chris. Wish I had thought of them.   We did get gloves for MD and that really did help. He really was into washing the top of his hands round and round.
All this reminded me that he has been really picky about drinking. He always thinks something fell on his drink and  will stop drinking and want a new drink. What I did is just get him drink bottles so they are closed up and nothing can fall in them and he feels good about them again. He would look inside a glass for a long time trying to find something that fell in his drink. With the close bottle he feels confident nothing could have gotten inside and is OK drinking it.

 
Alex Polikowsky

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Chris Sanders

On Oct 13, 2011, at 9:25 AM, BRIAN POLIKOWSKY wrote:

> Those were great ideas for hand chapping Chris. Wish I had thought of them. We did get gloves for MD and that really did help. He really was into washing the top of his hands round and round.
> All this reminded me that he has been really picky about drinking. He always thinks something fell on his drink and will stop drinking and want a new drink. What I did is just get him drink bottles so they are closed up and nothing can fall in them and he feels good about them again. He would look inside a glass for a long time trying to find something that fell in his drink. With the close bottle he feels confident nothing could have gotten inside and is OK drinking it.
>
>
> Alex Polikowsky

There were/are lots of other things we did/do to help her -- I keep hand sanitizer with me and she is satisfied using that if she can't get to a sink & soap; She uses her foot to flush public toilets; I do not keep refrigerated leftovers longer than 72 hours. And something that I think is important, we don't point out any lack of worrying to her. What I mean is, if I realize that something in her environment may be potentially contaminated/contaminating but she doesn't notice or think of it -- I keep my mouth shut! Also, don't go see the new movie - Contagion - lol!

She used to avoid watching any new TV shows or movies for fear there would be throwing up in them. She likes me to pre-screen movies as much as possible and I use the website kidsinmind.com for that. It has very detailed factual information about scenes that may be considered violent and/or gory in addition to profanity and sexual content without revealing the plot. For TV shows, she prefers to watch new-to-her shows by herself so that if there is a gross scene, she can react (or not react) in private. She often will share TV episodes with us that she's already seen and knows are not disturbing. She mostly uses Netflix for TV show watching. One exception is the TV show Glee. She asks us to preview it for her each week and then she watches it online when it becomes available on their website the next week. We enjoy the show too, so we're happy to watch it when it comes on.

I realize that these accommodations may seem extreme to some but they're very much improved from where we were just a couple of years ago and she is so much more relaxed and happy with her life, getting more confident and willing to try new things more and more all the time!

Chris

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alma

Thank you for the replies.

I feel we have been as accommodating as possible, for a number of years, in all the sorts of ways mentioned. But he hasn't grown out of it, it hasn't got easier and shows no signs of shifting.
We have believed that accommodating and therefore his trusting us was appropriate. In the early years we found that if we dealt with one issue others popped up in their place, so after a while decided to stick with the ones we know. Unfortunately they have become very fixed for DS.

It may sound like he's a controlling tyrant in the family, but it certainly isn't about any desire/need to control on his part. He is all too aware of the negative effects on the family and often expresses his gratitude that we understand what it's like for him. He does feel as strongly when he has to get up and do it himself, but I then worry that I am not being kind and loving towards him. He will rush around with wet cloths and/or wear disposable gloves. It is definitely not about laziness or bossiness for him. It is about fear (which he actually knows is irrational), and it is about needing to avoid things or develop rituals to make him safe. He wishes it were different.

He is quite certain that he will never travel abroad once his passport runs out next year (most of our family is abroad) since he will never take his hat off in public (you are not allowed to wear hats in passport photos). He has worn the same hat for several years and says that he feels as if he were naked without it. In desperation I even tried to bribe him by saying I would buy him any lego set he wanted if he would walk into the toyshop without his hat.

He certainly expects to live alone when he is older (this has come up from time to time) and cheerfully tells us that having a wife and children will be his brother's job! Any suggestion that his dreams or ideas about the future might involve him having to tackle his fears sends him away from those dreams/ideas rather than towards tackling the fears.

Sometimes his reactions are more severe than others, and I will definitely look for any hunger/sleep connections. I have also ordered the worry book that's been suggested.

I have two specific questions
1) Is it helpful to him to refuse to accommodate him, or will it damage his trust/security?
2) How can we balance his need to feel safe with his brothers need to live without catering to his brothers irrationality? How have you managed this in your family?

Thank you,
Alsion


--- In [email protected], Chris Sanders <iowaunschoolers@...> wrote:
>
> Zoe (almost 14) started having intense anxiety when she was eight years old. Her worries interfered with her being able to do the things she wanted to do. She went from being an extremely social little girl involved in many, many clubs and activities to being almost homebound. She also got chapped hands, had trouble sleeping, and requested accommodation by her family for her many peculiar rituals and reassurance from her worries.
>
> Over time her dad and I were able to sort out what was going on and by accommodating her whenever we could, we were able to gain her trust that we would do what needed to be done for her to feel safe. We tried to never force her to go anywhere she felt uncomfortable about, we often took two vehicles to family outings so that if she suddenly decided she needed to leave, one of us could take her home while the rest of the family could continue. We didn't take any family vacations at the peak of her anxiety (for about two years.) Knowing that we were listening to her needs and would take her requests seriously, she began to relax some -- to not always be in a heightened state of alert and ready to fight or fly. Once she was able to relax, she was easier to reason with and we talked about her worries -- what they were and how they made her feel physically. She told me that when she touched something that her brain told her it would contaminate her hands and that her hands had the physical sensation of being cold, until she washed them. She also told me that she didn't like having so many worries and wished she could make them go away.
>
> We tried to accommodate her as best we could but we were also cognizant that her worries shouldn't impose on her brother's life if we could avoid it. Fortunately, being an older sibling, he was often understanding and sweetly accommodating to her but there were times when we felt we needed to step in and help her deal with her anxieties while letting her brother continue with whatever it was he was wanting to do.
>
> One technique that she used to help reduce hand chapping, was to only wash the palms of her hands. This worked only when she felt it was a minor contamination. If she used the bathroom or touched something particularly disturbing (sitting on a strange floor and putting her hands down where lots of people have walked for instance) she washed her entire hands and up the arms a ways. We used Lansinoh - a medical grade lanolin made for breastfeeding mothers - with white cotton gloves at night, to help her hands heal.
>
> I also bought this book: http://www.amazon.com/What-When-You-Worry-Much/dp/1591473144/ref=sr_1_1?s=books&ie=UTF8&qid=1318511113&sr=1-1 and we read it together and she did some of the exercises in it and practiced some of the techniques for gaining control over her worries. Rarely, but still on occasion, I coach her through these techniques when she gets particularly anxious. The book sits out where she can easily find it.
>
> Over time, as she has matured and with our patience and understanding, she seemed to gradually grow out of a lot of her worries. She now enjoys lots of socializing and activities like dance and art classes and drama. She does still have a tendency to worry but her life is not dominated by her them. We've also learned that for her there is a direct correlation between between being hungry or overtired and increased worrying for her so we try to pay careful attention to making sure she's got food available and while she has autonomy over her sleeping habits, we do talk with her about whether or not she's been getting enough sleep, especially when she's more anxious.
>
> Chris
>
> [Non-text portions of this message have been removed]
>

Sandra Dodd

-=-He does feel as strongly when he has to get up and do it himself, but I then worry that I am not being kind and loving towards him.-=-

I don't think you should say "Because you're old enough, I'm never going to do that for you again," but saying "Because you're old enough, I'll do it for you sometimes, but you should start doing it for yourself" seems reasonable.

-=-He is quite certain that he will never travel abroad once his passport runs out next year (most of our family is abroad) since he will never take his hat off in public (you are not allowed to wear hats in passport photos). -=-

I've heard that orthodox Jewish women who are required to cover their hair have often (in the U.S., at least) gone with wigs, so they technically covered their own hair, but it still looked like hair. That might be a possibility, though it might be illegal if it doesn't look like his own hair; I don't know that sort of technicality with passport photos.

-=-1) Is it helpful to him to refuse to accommodate him, or will it damage his trust/security?-=-

It's harmful to his brother for you to NEVER refuse to accommodate him. If you only had one child, you could focus on him, but his younger brother isn't his mom.

It's not a never or always question. It's a "he's getting older" question.

Gradually from birth the time and attention a mom spends with and on a child diminishes until what they do is really none of our business. You're somewhere on that continuum. But because your younger son is younger, probably you should be spending more time with him, more attention to his needs, than his older brother's, if not already, pretty soon here. Or at least thinking about it, or being willing to.

That graph might help a little. Or not. :-)
http://sandradodd.com/howto/

Sandra




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BRIAN POLIKOWSKY

You say this:

"I feel we have been as as possible, for a number of years, in all the sorts of ways mentioned."

and then this:

"In desperation I even tried to bribe him by saying I would buy him any
lego set he wanted if he would walk into the toyshop without his hat.

He certainly expects to live alone when he is older (this has come up
from time to time) and cheerfully tells us that having a wife and
children will be his brother's job! "

-=-

So maybe there has been more pressure than you realize in your and your husband;s part to fix him even if you did try to accommodation him.
Why would a child so young be thinking and talking about how he is going to live alone in the distance future? That raised a red flag to me that he has heard that if he does not change no one will ever put up with him and he will be all alone.
So maybe  he is getting from you all this fear that his future will be bleak and lonely if he does not change now. It does not give him the opportunity to relax, grow and change.
He may always be peculiar about things and even eccentric. That does not guarantee he will never meet a partner that will love him for who he is and live a happy life together.
There is a really good movie I saw years ago:
"As Good as it Gets" where he is someone that struggles with many ODD behavior. IT is a great movie, not for a child as there is some violence but for you it may help you a lot.


Alex Polikowsky

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Sandra Dodd

-=-Why would a child so young be thinking and talking about how he is going to live alone in the distance future? That raised a red flag to me that he has heard that if he does not change no one will ever put up with him and he will be all alone.-=-

I don't think they have pressured him, but I also think that it's TRUE that if he doesn't change he might need to live alone. That's true of people with much less extreme oddities.

I think every childs think about how he might want to be as an adult, at least sometimes. And I think every parent probably has at least fleeting thoughts of "what if I'm not around until he's grown?"

There are curves--the parents getting older, the child growing up--and at some point those curves meet and cross (IF all involved are lucky), and at that point the parents' advice isn't going to be the primary factor/assistance. He might stay with his parents. He might end up helping them out, and inheriting the house (I have no idea about laws or house prices in the UK, I'm just talking about f'rinstances). He might end up logicking himself out of all this, or maturing in his nervous system in some way that will make him more comfortable with his own sensations and fears.

There are things kids are full-on terrified of that they work out, in their own ways, as they get older or puberty comes along. Fear of the dark, fear of the closets, of the space beneath the bed, or of dogs or strangers or loud noises. Some kids might not get over those until they're 18, some when they're 8. I think that's a normal range for physical (biochemical or whatever) maturity and for cognitive practice and maturity.

Marty (22) is in the room and says he's always been afraid of mystery (of spooky darkness, and that someone might jump out of the dark). When he was 18, he and Holly went to Florida and there was an offer to take them to the beach. Marty didn't want to. He said the ocean scared him. He was fine to swim in Elephant Butte Lake (out in the middle, in and out of a houseboat), and in the Blue Hole in Santa Rosa (over 300 feet deep, he thinks).

Now that he's older, he says, he's not afraid of being in at the edge of the ocean (he did a surfing lesson in San Diego two years ago), but the idea of being in the middle of the ocean where he doesn't know what's below him and it's big enough to sink a ship scares him.

In Marty's case, he needs to not join the navy. And I'm not sure how he would feel about intercontinental travel. He had talked about going to India with me last year.

So Marty figures 18 is arbitrary. :-)

I'm still a little afraid of public transportation, and I'm 58. :-)
I grew up in a town without a taxi, bus, nothing. Moved to a small city (Albuquerque) with city buses and nothing more.
I'm not afraid in a fear-of-0thers or fear-of-equipment way. I'm just afraid of the awkwardness of not knowing what I'm doing. It's part of perfectionism, maybe. I avoid activities in which I'm incompetent.

I'm afraid of Japanese soup, but not afraid it will get me in the dark. I just don't order it in restaurants. :-)

I'm making light of this only to put it in context. Fears, whether rational or not, are personal and people will get over their fears the same personal and individual ways they learn about history, geography, math, music, art, cooking, butt-wiping, shoe-tying, games-playing. Or they won't.

Sandra



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BRIAN POLIKOWSKY

"I don't think they have pressured him, but I also think that it's TRUE
that if he doesn't change he might need to live alone. That's true of
people with much less extreme oddities."

Sure . Isn't he 8 or 9 years old ( maybe I am wrong and he is older) . So I was envisioning this very young child.
When I was that age I was not afraid of spiders, sometime later on, around 11 or so I became really really afraid of them.
Like I cannot even deal with fake rubber ones. Today I am still afraid but since having kids I am a lot braver then before and will even catch them in a container to release them outside ( the bug vacuum works great too)
I do not remember worrying when I was older about how it would be when I grew up and was afraid of spiders. I did hear " What are you going to do if there is a spider in your house and your mom or dad are  not there to save you ?"
I really was paralyzed by my fear of spiders and they can be big in Brazil

Does he want to change? Does he want to not be like that? What does your son say about this all?




 
Alex Polikowsky

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Meredith

"alma" <almadoing@...> wrote:
>> He is quite certain that he will never travel abroad once his passport runs out next year (most of our family is abroad) since he will never take his hat off in public... In desperation I even tried to bribe him by saying I would buy him any lego set he wanted if he would walk into the toyshop without his hat.
*******************

Why should he take his hat off in a toy shop? That sounds like you're thinking in terms of desensitization or teaching him to go hatless so he can get a passport photo. Better, if he Wants a new passport, to brainstorm ways to do that. Maybe, as Sandra suggested, a wig or some other partial head covering - cover the back maybe for comfort? Or think in terms of a something like a trip to a doctor to get stitches - not fun, not something you Want to do, but you can plan to do something fun afterwards, or bring a security object along, or find a distraction for the process.

>>Unfortunately they have become very fixed for DS.

Take the word "unfortunately" out of that sentence - take it out of your thinking. Consider his rituals and needs as facts, real life limits to brainstorm around. It could help to imagine that he has an obvious Physical disability and think about how you'd help him. If he had to wear a hat because he had a serious scalp condition, you wouldn't be trying to get him out of the hat, for instance.

> 1) Is it helpful to him to refuse to accommodate him, or will it damage his trust/security?
**************

Re-ask yourself that question with a big physical disability in mind. If he was blind, would you refuse to read to him? If he was quadriplegic, would you refuse to open a door for him?

> He certainly expects to live alone when he is older

Is that a bad thing? My brother lives alone. He just turned 40. He has a good job and a hobby he enjoys, he has friends and stays in touch with family. Living alone isn't a terrible thing.

>>Any suggestion that his dreams or ideas about the future might involve him having to tackle his fears sends him away from those dreams/ideas rather than towards tackling the fears.
***************

Stop making those suggestions! He's hearing them as "you'll never do it, give up now." Feed his enthusiasm and his dreams. If He worries about tackling his fears, assure him help will be available. You're pointing out his limits - pointing right smack at them and saying "the trouble with your plan is this". Instead, help him see beyond his limits by not mentioning them before he does. He's not oblivious to his own problems! He doesn't need to be told he'll have obstacles to face, he needs to know those obstacles don't define who he his.

---Meredith

Meredith

Sandra Dodd <Sandra@...> wrote:
>> There are things kids are full-on terrified of that they work out, in their own ways, as they get older or puberty comes along. Fear of the dark, fear of the closets, of the space beneath the bed, or of dogs or strangers or loud noises.
*******************

And there are things adults are terrified of that they do anyway. My mother was terrified to fly and worked for years at a job which required her to get on a plane once a month. A girlfriend of mine was over this afternoon and told me for the first time she has huge anxiety around getting lost while driving. She said for the five years she lived in New York state, she drove to work and home every day with the directions in one hand so she wouldn't miss an exit. I'm terrified of heights and I work on scaffolding now and again - sometimes I'll sit at the top and take a lot of deep breaths before I can take that first, mind-whitening swing over the edge to climb down, knowing I've done it before and will do it again, but still scared every time.

---Meredith

Chris Sanders

>
> I feel we have been as accommodating as possible, for a number of years, in all the sorts of ways mentioned. But he hasn't grown out of it, it hasn't got easier and shows no signs of shifting.
> We have believed that accommodating and therefore his trusting us was appropriate. In the early years we found that if we dealt with one issue others popped up in their place, so after a while decided to stick with the ones we know. Unfortunately they have become very fixed for DS.
>
>
He may or may not grow out of it, but I've heard many times about kids his age being very fearful and then gradually becoming less fearful as they get older. It happened with my daughter. She didn't start feeling less fearful until she was 11 - 12 years old. I think that her maturing development along with her growing trust in her father and me were important factors in her improvements. As she grew older, she was better able to see how she could reason herself past her fears. This didn't start happening until she wanted it though. She told me that she didn't want to be so worried anymore and that she wanted to be able to do things that her fears were preventing her from doing -- mostly social things. That is when we read that book. I never pushed her to use the techniques in that book. I didn't even buy it until she asked me to please help her with her debilitating fears. Several times after we read it I reminded her about the techniques she'd learned and I sometimes talked her through them when she wanted me to. We also reread the book together several times. I think the key was SHE wanted to change herself.

When your son wants it for himself, he will be more receptive to the suggestions in the book. As he gets older, if he gets very unhappy about his fears and feels they are interfering with what he wants to do, he may ask you for more help. If you feel like you need more help, it's okay to see a professional. I told Zoe that I would do whatever I could to help her as much as she wanted. I told her that a therapist might be able to give us some useful ideas and she asked me to arrange for us to see one together. We saw a woman (MSW, LISW) who practiced Play Therapy with children. She allowed me to stay in the room with them, and Zoe played some, but mostly she preferred to talk with the therapist about what was going on in her life and how she was coping with her fears and frustrations. The therapist never applied any labels to Zoe as far as I know -- she may have made a diagnosis for insurance purposes but she never told us. She mostly encouraged Zoe to keep doing the things that worked well for her, she made some suggestions to Zoe about ways to cope and she listened and reflected back to both of us what we told her. My confidence was buoyed because the therapist told me that she thought that everything I was doing was right on.

>
> I have two specific questions
> 1) Is it helpful to him to refuse to accommodate him, or will it damage his trust/security?
>
A lot of the books I read about Obsessive Compulsive Disorder suggested parents and teachers refuse to accommodate or reassure the child. On a couple of occassions I tried not accomodating her requests but then saw Zoe's anxiety increase and she would become frantic and desperate. A desperate, frantic child who doesn't trust their parent to keep them safe -- can be very dangerous. There were two occasions when my refusal to accommodate her requests resulted in her attempting to flee the scene (near public roads far from home) without me. I regret those incidences. When Zoe's anxiety levels were so high, there was no reasoning with her, whatsoever. When she did not trust me she would not tell me what she was afraid of and she would not follow my directions even if it was a serious safety issue. I had a hard time understanding what triggered her sudden fears for awhile. However, once I was able to gain her trust again, through consistently accommodating her requests, no questions asked, for a period of weeks at least, she began to relax, trust that I would help her feel safe no matter the situation, and she started to open up to me. The more I thought about it, the more I came to the conclusion that her ability to deal with her fears and eventually decide to take control of them, would be greatly inhibited if she were in a frequent state of high anxiety. My goal then, was to allow her to feel as little stress as possible for as long a time as she needed. I wanted to stop the flow of whatever chemicals were flooding her brain all the times she was so anxious. I suspected that allowing her to return to a near constant state of calm and relaxation, would result in her being better able to do the work she would need to do to conquer her fears. I couldn't see how it would hurt.


> 2) How can we balance his need to feel safe with his brothers need to live without catering to his brothers irrationality? How have you managed this in your family?
>

My husband and I worked it out so that one of us could almost always take care of her needs so that her brother didn't have to be impacted by them. Her brother is six years older, so it was easier for him to understand and be patient during the times when we were focused on her, than it would be for a younger sibling. When she used to insist that he wash his hands or she tried to dictate to him what he could or could not eat based on her own fears, I would say to her that it was okay for her to make those decisions for herself but that she couldn't make them for other people. Then if she couldn't calm down about it I would usually remove her from her brother's presence and stay with her until she was calmed down.




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Sandra Dodd

-=-As she grew older, she was better able to see how she could reason herself past her fears. This didn't start happening until she wanted it though. She told me that she didn't want to be so worried anymore and that she wanted to be able to do things that her fears were preventing her from doing -- mostly social things. -=-

Just as with reading, or riding a bicycle, though, the wanting it isn't enough. They need the desire AND the ability (physical, emotional, mental/logical/whatever-happens-in-brain-or-mind).

It looks to me from a few cases I've watched of kids growing to adulthood that Asperger's is something people can grow out of or learn to deal with as teens, if they're haven't been tortured by other kids at school for twelve years while they're growing up. They might never be politician-quality interpersonal geniuses, but they will have learned how to get along with other people and to interpret situations and expressions in their own way, with help from loving families and friends. It's just not going to be something they are born with, or figure out by the time they're ten years old.

Some things take more time for some people.

We accept it for walking, talking, balancing, drawing and reading. I think it's true of emotional things as well.

Sandra

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Sandra Dodd

-=->>Any suggestion that his dreams or ideas about the future might involve him having to tackle his fears sends him away from those dreams/ideas rather than towards tackling the fears.
***************

-=-Stop making those suggestions! He's hearing them as "you'll never do it, give up now." Feed his enthusiasm and his dreams. -=-


Although it's not an exact parallel, I learned something from my (now-grown) kid, Marty, that might be good in such a situation. He suggests saying "That would be cool!"

That suggestion came from me expressing my frustration and dismay that one of our favorite friends would say "I'm coming to your house at 3:00" and never showing up, or "I'll be there after practice," and never showing up. Whether vague or specific, he was as likely not to come over as he was to come over. And I always waited or planned around it, while Marty was much more casual and didn't always stay and wait (when the offer was made directly to Marty, because the guy was friends with three of us kind of independently, different interests). I have another couple of very enthusiastic, unreliable friends. So I was asking Marty how he stayed happy in those situations. He said when the promise/offer/deal was first made, he would think of it as a maybe, or as the person imagining an ideal they might not even remember. And he said he would respond "That would be cool!" If it happens, great. [If it doesn't no problem--the unspoken part.]

Sandra

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Robin Bentley

> It may sound like he's a controlling tyrant in the family, but it
> certainly isn't about any desire/need to control on his part. He is
> all too aware of the negative effects on the family and often
> expresses his gratitude that we understand what it's like for him.
> He does feel as strongly when he has to get up and do it himself,
> but I then worry that I am not being kind and loving towards him. He
> will rush around with wet cloths and/or wear disposable gloves. It
> is definitely not about laziness or bossiness for him. It is about
> fear (which he actually knows is irrational), and it is about
> needing to avoid things or develop rituals to make him safe. He
> wishes it were different.

It sounds a bit like he's gotten the message that what he does and how
he feels is wrong. That it's a huge effort for you all to be
"accommodating". I'm wondering if you could accept him as he is
without reservation, then perhaps he could relax. Right now, it seems
like he's agonizing over the trouble he's causing you.

What Chris wrote about their family's experience with helping Zoe
should help. I know Zoe on this end of her fears and what Chris and
Rick did was exactly what she needed.
>
> He is quite certain that he will never travel abroad once his
> passport runs out next year (most of our family is abroad) since he
> will never take his hat off in public (you are not allowed to wear
> hats in passport photos).

You are allowed if you have a medical reason to do so. Have you
researched the possibilities there?

> He certainly expects to live alone when he is older (this has come
> up from time to time) and cheerfully tells us that having a wife and
> children will be his brother's job! Any suggestion that his dreams
> or ideas about the future might involve him having to tackle his
> fears sends him away from those dreams/ideas rather than towards
> tackling the fears.

Stop making suggestions, as Meredith pointed out.

He is who he is today. Projecting what problems his future will hold
doesn't give him much hope, does it?

I think of an unschooling mom whose daughter died suddenly at the age
of 9. Too many parents focus on their kids' brilliant or horrible
future, based on what's going on right now. What if the kids don't
have a future? Be with your son now, where he is and help him live to
his best ability today. He really wants your help and wants to trust
you.
>
> I have two specific questions
> 1) Is it helpful to him to refuse to accommodate him, or will it
> damage his trust/security?

See everything that Chris wrote most recently.

Would it be helpful to you if your husband refused to accommodate you
if you had serious fears, irrational or not? Do you think that would
encourage you to "get over it" or would those fears remain more
entrenched?

> 2) How can we balance his need to feel safe with his brothers need
> to live without catering to his brothers irrationality? How have you
> managed this in your family?

Again, Chris's writing is helpful.

It's your responsibility as parents to help both of them, in the ways
they need. Whether the fears are rational or irrational makes no
difference - they just are. I wouldn't even discuss "irrationality"
with your younger child.

If your eldest son had cerebral palsy or something else that took a
good deal of your time and attention, your youngest son might feel
left out then, also. But finding ways to meet both of their needs (ie.
one-on-one time with the youngest; arranging for friends to come over
for him; dad being more involved with him; and more) is what you'll
need to figure out, as parents to both of them.

Robin B.

Sandra Dodd

-=-Would it be helpful to you if your husband refused to accommodate you
if you had serious fears, irrational or not? Do you think that would
encourage you to "get over it" or would those fears remain more
entrenched?-=-

This a giant "it depends."
If I had fears that kept Keith from taking a shower or going to work, it wouldn't be good for him to accommodate me directly himself. He might need to accommodate me with drugs or professional help.

I have a friend who can hardly do #2 (take a poo) anywhere but at his own house. Sometimes he just needs to. He NEEDS to get over that, or find tricks or tools to help, or he can either not ever travel or go to work, or he risks his health.

He has other anxieties, and occasionally takes drugs for that, and benefits (by his own account) when he does. Sleeps better, thinks more clearly.

-=-It's your responsibility as parents to help both of them, in the ways
they need. Whether the fears are rational or irrational makes no
difference - they just are. I wouldn't even discuss "irrationality"
with your younger child.-=-

I might not use that word, but I would not pretend that rational and irrational were equal.

-=-If your eldest son had cerebral palsy or something else that took a
good deal of your time and attention, your youngest son might feel
left out then, also. But finding ways to meet both of their needs (ie.
one-on-one time with the youngest; arranging for friends to come over
for him; dad being more involved with him; and more) is what you'll
need to figure out, as parents to both of them.-=-

This is true. But cognitive therapy isn't going to cure cerebral palsy. It might, at some point, help untangle fears (whether they were rational or not).

Sandra

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Chris Sanders

> Just as with reading, or riding a bicycle, though, the wanting it isn't enough. They need the desire AND the ability (physical, emotional, mental/logical/whatever-happens-in-brain-or-mind).

It seemed to me that the desire came along with the ability. It seemed developmental. I don't see how the ability can happen without the desire. Practicing the techniques which I suppose are a form of cognitive therapy, are difficult and intense at times, not something a kid would likely be able to endure without wanting to.

Chris

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alma

Thank you all for this discussion. I realise now that part of the problem was that DH and I were concerned that

1)We were causing these problems to become entrenched by accommodating DS1s quirks way beyond what would be possible in any mainstream life.
2)We would miss a `window of opportunity' to deal with this issue. Instead I see we were missing that, just as with reading etc, the real window of opportunity will come from him as and when (or if) he is ready.
3)That we would need to sacrifice the needs of one or other child.

I think our concerns have led us to lose confidence and become (and show) our frustration and exasperation with jumping through the many irrational hoops DS1 creates, especially since DS2 has shown strong resistance at times.

I think we need to relax again in supporting DS1 while being extra creative about the impact on other people, especially DS2. I really appreciate your jogging my thinking on this one.

I remember Sandra saying somewhere something along the lines that one should not compare one's child with same age children in school but rather with how your own actual child might be were s/he in school.

Alison
DS1(9) and DS2(6)


--- In [email protected], Sandra Dodd <Sandra@...> wrote:
>
> -=-As she grew older, she was better able to see how she could reason herself past her fears. This didn't start happening until she wanted it though. She told me that she didn't want to be so worried anymore and that she wanted to be able to do things that her fears were preventing her from doing -- mostly social things. -=-
>
> Just as with reading, or riding a bicycle, though, the wanting it isn't enough. They need the desire AND the ability (physical, emotional, mental/logical/whatever-happens-in-brain-or-mind).
>
> It looks to me from a few cases I've watched of kids growing to adulthood that Asperger's is something people can grow out of or learn to deal with as teens, if they're haven't been tortured by other kids at school for twelve years while they're growing up. They might never be politician-quality interpersonal geniuses, but they will have learned how to get along with other people and to interpret situations and expressions in their own way, with help from loving families and friends. It's just not going to be something they are born with, or figure out by the time they're ten years old.
>
> Some things take more time for some people.
>
> We accept it for walking, talking, balancing, drawing and reading. I think it's true of emotional things as well.
>
> Sandra
>
> [Non-text portions of this message have been removed]
>

alma

Thank you all for this discussion. I realise now that part of the problem was that DH and I were concerned that
1)We were causing these problems to become entrenched by accommodating DS1s quirks way beyond what would be possible in any mainstream life.
2)We would miss a `window of opportunity' to deal with this issue. Instead I see we were missing that, just as with reading etc, the real window of opportunity will come from him as and when (or if) he is ready.
3)That we would need to sacrifice the needs of one or other child

I think our concerns have led us to lose confidence and become (and show) our frustration and exasperation with jumping through the many irrational hoops DS1 creates, especially since DS2 has shown strong resistance at times.

I think we need to relax again in supporting DS1 while being extra creative about the impact on other people, especially DS2. I really appreciate your jogging my thinking on this one.
I remember Sandra saying somewhere something along the lines that one should not compare one's child with same age children in school but rather with how your own actual child might be were s/he in school.

Alison
DS1(9) and DS2(6)


--- In [email protected], Sandra Dodd <Sandra@...> wrote:
>
> -=-As she grew older, she was better able to see how she could reason herself past her fears. This didn't start happening until she wanted it though. She told me that she didn't want to be so worried anymore and that she wanted to be able to do things that her fears were preventing her from doing -- mostly social things. -=-
>
> Just as with reading, or riding a bicycle, though, the wanting it isn't enough. They need the desire AND the ability (physical, emotional, mental/logical/whatever-happens-in-brain-or-mind).
>
> It looks to me from a few cases I've watched of kids growing to adulthood that Asperger's is something people can grow out of or learn to deal with as teens, if they're haven't been tortured by other kids at school for twelve years while they're growing up. They might never be politician-quality interpersonal geniuses, but they will have learned how to get along with other people and to interpret situations and expressions in their own way, with help from loving families and friends. It's just not going to be something they are born with, or figure out by the time they're ten years old.
>
> Some things take more time for some people.
>
> We accept it for walking, talking, balancing, drawing and reading. I think it's true of emotional things as well.
>
> Sandra
>
> [Non-text portions of this message have been removed]
>

Sandra Dodd

-=-I remember Sandra saying somewhere something along the lines that one should not compare one's child with same age children in school but rather with how your own actual child might be were s/he in school. -=-

If both your kids were in school, the older one might likely have worse problems, and the younger one would be hearing from others what they thought about his brother's nervous habits and reactions. But the younger one would have long stretches of time where he wasn't where his brother could tell him what to do.

I think you're in a good place. :-)

Sandra

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