Rania Z

This discussion topic is asking adults with Aspergers to share what they wished their parents/educators could have done earlier on in life (school years) that would have helped diminish feelings of low self confidence, depression, anxiety, etc. carried on until adulthood. It might send adults with AS in a dark place, but sharing stories would help parents & educators caring for young AS children try to avoid doing/saying something that can be damaging. I am hoping that this would be a positive learning experience - I am in much need of such advice being the mother of a 6 year-old boy with AS, and being a high school teacher as well.

[Updated on 1/3/2010 1:47 AM]

Linda Riviello

I feel that the book "Super Senses" by Dyllan Rafail is a great way to let your child understand what he/she is feeling and that they are not alone. Also a great tool for educators as well as family members, friends and the community as a whole.
This book is written and illustrated by a 12 yr old.

Rania Z

Thanks, Linda... I'll order the book.

rbalogh

Rania,
I recall reading in a earlier post about how to help your son deal with issues of self esteem.
It is an issue so common to our children. They get so frustrated and turn that into a negative judgement of themselves. The tragedy is when that judgement is reinforced by those around him.
one thing that has worked (with my children), is to help him to identify the emotion he is feeling at that time..frustration, fear, anger, sadness, etc. and why it has happened.
He does not understand the nature of his emotional axperience, he literally believes that "because i feel it, that it must be true".
Once he is calmed down:
Help him to understand that emotion is a gauge or tool to use to figure out whether we like or dislike our situation.
Explain to him that he has a brain which works like a race car, computer (whatever metaphor he likes), and like any wonderful new car, computer, etc, he has only started to learn how to use it. He will make mistakes (crash), but that is OK, because that is one of the many ways we learn. Help him identify the feeling, it is real. When it hurts, he has learned something important that he will do differently next time. Help him discover what he has learned (the reason for the emotion), if he needs to do that. Explore different ways to handle the situation.. Then be prepared to repeat the message many times in many different situations. You may not bel;ieve you're getting through, but you are. He will eventually own that message as his own truth.
I hope this is of value, rbalogh

autism momma

I found it useful rbalogh,I have the same issues with my 4 year old.I also had the same issues,only nobdy did anything to help build up my self esteem.I still struggle with this every day.

rbalogh

justin, My one conceern in what I wrotewas that a 4 or 5 year old may not be verbal enough to participate in what i suggested.. Your thoughts?
Roger

rbalogh

justin, I'm sorry that there was no one to help build yoyur self esteem. I was one of the lucky ones. There was some emotional abuse from my parents, but they did much to build my self esteem and help me along, too. It' such a struggle to recover from. I read your posts and I admire you for your strength and courage. How you can go through what you've been through and not have given up is remarkable indeed. The good is that you now have a choice to respond differently with your 4 y.o. and break the cycle of abuse. Roger

rbalogh

justin, if you notice, I often have two responses. The first is the AS response. The second is the one which contains the emotion. The thought and the emotion are not in sync. I have to work to get to the emotional response.
Roger

Jahki Brown

Really clever rbalogh
There is so much valuable information coming forward now, makes you wonder how far it can go, its so exciting because people are starting to own themselves and their own experiences and gain valuable information and instruction on how to do that.
Jahki

Jahki Brown

Rainz
The thing I really hated was being incorrectly interpreted by other people. It sent me into panic and made me feel very isolated
Jahki

rbalogh

Thanks Jahki, I can use this network and dialogues to work on this aspect of myself. I feel excited about that (got it together this time).
rbalogh

Louisa

I wish my parents would have believed me more often. I'm simple-minded and just tell it like it is.

autism momma

Thankyou roger.Maybe,I can wait until my daughter is older,but she does have a large vocabulary.She has trouble with pronouncing certain sounds.She is constantly asking questions.I have one kid that can`t talk,and one that won`t shut up.I`m thrilled,she talks,but sometimes,i`m mentally wiped out,and she keeps talking.Sometimes I tune her out,and she`s like mom,hello,i`m talking to you.She is smart,just seems to have memory issues regarding letter,and numbers.Used to be colors and shapes,but she has improved alot there with EFAs.Constantly asking questions,sometimes I don`t have the ansers.I think,if my mother hadn`t died,my self esteem would not have taken such a blow.I went from being an only child to being one of 7 after my aunt and uncle adopted me.Sometimes I felt,like they didn`t love me like they did there own,and I feel my kids get the same,compared to the other grandkids.I need to let it go,but it`s hard at times.Also,they were catholic,and I couldn`t measure up to the standards with my relationship problems.Moving from one to another.Divorce,and a child out of wedlock.

Jahki Brown

Louise that some thing I still notice is that people who are not really accurate, for what ever reason, in what they say, think other people aren't as well, I also notice, even now, that if some one is thinking or feeling some thing they'll say I'm thinking or feeling it.... bizarre... These days I'm a lot more capable of picking them up on it immediately.

Jason Copeland

Jahki, I know what you mean about being misinterpreted. It still makes me furious, even nearly 60 years later - especially when I put much care into my choice of words to convey my meaning precisely, still the bloody fool NTs can't hear what I say, and project their own agendas onto it. AAAAAAGH!!!

Jason Copeland

Louisa, I wish my parents had believed me once!

Jason Copeland

Rania, thank you for starting this discussion! Choukran!

Jahki Brown

The truth telling thing is interesting. I wonder if its spectrum issues. I can remember my boy practising lying. It was really exaggerated like every thing he did, and nothing I said would stop him, he could be caught red handed doing some thing by a dozen people and deny it. He'd lie just for fun and if it was just as easy and accurate to tell the truth he'd still lie; so in the end I just decided that maybe he was going to be a spy and it would save his life one day. One of his first jobs was as a car salesman so I made a few jokes about that, but a couple of years ago it dawned on me that he was using lying to protect and empower himself and to give himself a private world . As soon as I said that to him I saw his face go all vulnerable like the little boy who first made the decision to use that as a survival tactic, and then he stopped lying. He also stopped the high paying sales jobs and went after work and life style with more integrity to it. The funny thing was even though I knew this about him through his entire childhood my initial response was always to believe every thing he told me even though it was always proved wrong...hmmm.

Rania Z

Yaaaay, Jason! You used an Arabic word - I'm impressed!!! : D

I have some specific questions after reading the responses (which I will keep thanking you all for over and over again!):

1. Can you give me a specific example of being misunderstood? I'm still not sure what that entails... I'm scared to be doing the same with my son, and I'll explain later in this post.

2. Can you give me a specific example of your parents not believing you? What were you trying to tell them? Did they think you were lying? I don't fully understand and would love to know more.

3. My son HATES to lie - even white lies... he also hates to do anything wrong like shout or fight for his rights which subjects him to "accepting" the bullying that sometimes happens. Whenever I try to tell him: "If someone shouts at you or bothers you, it's ok to shout back, otherwise they will think that it's ok to treat you this way." He responds to me by telling me he can never shout or fight because it's wrong. He ends up crying if I persist. Is it futile to try to help him in this way?

I feel like I must be doing something wrong, and that's why this discussion topic is very important to me. These past few months, Seif went from telling me everything that bothered him, to now going to his room, hiding behind his blanket and refusing to tell me what is wrong with him (sometimes crying too). I want to constantly encourage him to open up, but I must be doing/saying something that is making him shut down from even me! He usually does this behavior after we have some guests who tend to pay more attention to his younger sister (1 year 4 months) than to him; I'm sure jealousy has something to do with it.

Anyway, any insight on the above matters would help me see through his eyes.

Jahki Brown

He's right, "fighting is wrong". Very many AS people come through with very high moral codes and understandings along with their massive sensitivity. I think if he makes a true statement then I would agree with him and I would reassure him that he is right, but I would also explain that right is different for different people and just because he knows some thing not every one does because they haven't learnt it yet . I would teach him in that instance and others of the same kind not to judge, and I would make sure that he is not on the recieving end of any bullying until he's modified his attitudes and learnt the skills necessary to protect himself.

It sounds to me that you have a very special boy who needs a lot of support, confirmation, care and protection until he can learn these skills for himself. Dealing with people is very difficult and he seems to be under some pressure to interact and maybe even compete on terms he can't possibly manage, even if your not putting the pressure there. I raised my boy to know he had to learn social ability and people skills, but he was who he was, with an extremely powerful personality and drive to be noticed and he did the rage version of AS... that probably wouldn't have worked for me I was the moral / grief type like your boy.

Better to allow your boy his own special place within the family that his sister can't manage and begin to build a positive sense of self and identity for him on his terms, make sure you find out what his terms are first though, you need to catch him before his self esteem gets too much damage because that is the big danger for your boy along with fear and isolation. I'm not sure what he's experiencing is as simple as jealousy, and I think that if he is coming out with such a high level of moral recognitions he is experiencing more than just social trauma.

Rania Z

Jahki, I liked what you said: "I think if he makes a true statement then I would agree with him and I would reassure him that he is right, but I would also explain that right is different for different people and just because he knows some thing not every one does because they haven't learnt it yet." That's a different way of looking at it that I haven't thought of before. I will tell him this next time. I realize that I contradict myself when I tell him that fighting/shouting is wrong, then tell him to do the very same thing in some instances. I only said that to him because there is a bully at school that physically and verbally abuses him (he was chocked once, pushed, was called a loser & stupid). I just want to be able to give him the tool of flexibility - to know when it's ok to do something like fight back to defend himself, and when it is considered way off base. So far, he is adamant on not fighting for himself. We met each other half way and the way he is coping is to ignore the bully and to walk away when situations start to get bad. i managed to get the school to separate them, but the boy still manages to find his way back to Seif. Anyway, I like the way you make me look at things in a different way and help me put on some 3D glasses. I've been needing this support all along to be able to put myself in my son's shoes and see things the way he does.

Jason Copeland

Salaam Rania. I have very few Arabic words, but I like to reach out to people even in a token way if I have any words of their native language at all. For me it is a way of saying hello and validating people.

My parents basically ignored everything I said, but there is one incident that still infuriates me 47 years later. My unmother had separated from my dad, and unfortunately she had custody of "the child" - me. She received a weekly pittance from him of one pound and ten shillings. One day I read a report in a newspaper that the law on maintenance payments had been changed, making it much easier for the custodial parent to apply to the court for an increase in maintenance from the non-custodial parent. I told her about it, and she replied "What do you know, you're only a child". After I truanted from school for three weeks, the truancy officer found me and I told him about this insult to my concern and care: he told my unmother that I was right in what I said, she applied to the court and obtained a 66% increase in her weekly maintenance payment, to two pounds and ten shillings. The bitch never thanked me for telling her, nor did she apologise for the disgusting insult. Even today, I could bayonet her for that! Well, I would if she was still alive. There were many incidents of her and her sister, the first deputy unmother, not believing me, or insulting me - but that one stands out most clearly in my mind, even at this distance in time.

autism momma

bout your mother Jason.All I can say,is maybe she had the same issues with her owm parents.Maybe that is how she was treated.Maybe she was on the spectrum,or had psychological problems.Still doesn`t take away the pain I know.

Rania Z

Wow, Jason... It's hard not to be able to shake off terrible memories. I wish there was an "erase" button somewhere where you just take away what you've learned and erase the bad experience. My son has very sharp memories regarding stressful times of being bullied in nursery - back to when he was 3 years old. Is this something common with Asperger's - the ability to remember things from long ago as if they were just yesterday? He surprises me sometimes by remembering things from his childhood (whether positive/negative) yet he can't tell me what he did an hour ago! Salaam : )

autism momma

Hello rania;I can remember a lot of things from my past,but my short term memroy is getting bad.The Tv shows I grew up with,I could recite the names of all the cast members,practically from every show.Recognise the faces of the stars,and singers I liked.New the names of the entire channel 7 action news team,but now forget it.I can still recite all the old stuff,but as for the names of the current news team I watch,I can`t name them,I don`t know the names of most of the cast members of TV shows I now watch.New singers,actors,I can`t remember their names and faces.When i was younger,I never forgot a name or face,but now I seem to be face blind,except for faces I knew long ago.Unless maybe I have a photo,and the name right their by the photo.I remembered a lot about when I was 2 and 3 when I lived with my mom and dad,and my grandfather.I confronted my real dad about things when I looked him up at 19.He was amazed that I remembered things from back then.Now,mostly I just remember remembering these things.The memories have faded,or I have a lot of alluminum built up in my brain,and matbe other stuff to.It`s hard to forgive people that treated you badly.I had to much anger,and rage over things from my past,and I finally realised it was eating me alive.I had to let go.Try and forgive.If that makes any sense,jason.

autism momma

One thing I wished somebody would have done,If I didn`t know how to do something in school,I was to shy to say so,or ask for help.Sometimes the teacher would come over and show me,if they noticed me sitting there doodling on my paper.Usually,I didn`t know how to do it,because while it was being explained,my mind was a million miles away.I daydreamed a lot.I would have homework.I would bring my books home,throw them in the chair,and thats where they stayed until it was time to go to school.My dad would ask if I did my homework,and I would say yes.He never asked to see it.It was different with household chores,he asked if you did it,and then went around to check,even running his finger across the shelf to see how much dust was there.He was more concerned if I did my housework,than my homework.My mom had tons of nic nacs,and we were expected to dust and move all of them everyday,Clean the kitchen,and put away any laundry,and clean our room,and vaccuum.My sister and I,either had the housework or kitchen,aand we both had to put away laundry and clean our room.My brothers had the bathroom,and their bedroom.They had to do yard work as was needed.Anyway,i was to shy to ask for help,and so I didn`t get any from my family,they figured it was my responsibility.I did manage to graduate,but I sucked at math,behond division.and I sucked at science.

autism momma

Anyway,I might have done so much better,if anyone had given a damn.

Jahki Brown

Jason
If you run on my theory of how to heal yourself ..You look at the incident , feel the emotion and thoughts, separate the emotion and thoughts from the incident, understand that the incident was a story line already gone and that the thought and emotion is what you live with... thats your true world not the world of stories.... and then you make decisions about the emotion/ thought world you're living in. Try to find the lesson for you within it and then forgive the pain.....This brings forgiveness for the parent(s,) You mightn't like her(them) but but you have understood your own experience and cleared it.
Jahki

Rania Z

Justin, after reading your post, it makes me thankful that my son at least has the courage to say, "I don't understand," or "I can't do it," rather than being too shy to admit that he's not comprehending things. I never looked at it that way; the flip side of things. You guys can't imagine how much you are helping me on a daily basis. It's making me more patient with Seif because I'm beginning to understand things more. He's showering me with more hugs & kisses, too, so I'm loving this even more : )

Rania Z

I read a lot about Aspies being misunderstood by NTs (I'm still not sure what the N and T stand for, but I get the gist of the acronym). Can anyone give me specific examples of being misunderstood; what was said and how was it misconceived? It would help me gain further perspective when it comes to my son.

autism momma

NT stands for neuro typical.Not sure I spelled it right.I have to think about the last part of your post.I`ll see if I can come up with anything.

Jason Copeland

Hi Justin. My mother's problem was that she was brain-injured while still in the womb, and that she was a Geordie (an English ethnic minority), so she grew up in a thuggish culture of contemptuous arrogance toward everybody but especially children. And, she was a self-righteous religious fanatic, abusive, with rigid ideas about children knowing nothing - which was a standard Catholic idea at the time, and one which has helped thousands of Catholic priests sexually abuse children, and other Catholic staff violently abuse children in orphanages around the world.

Rania, I often can't remember what I had for dinner yesterday, and usually I cooked it! Yair, a delete facility would be good, eh.

Jason Copeland

Justin & Jahki: I find that before I can forgive, I need to bring up to the surface the full measure of all the feelings attached to a wound. If I do that, then it starts to fade. That's why cathartic psychotherapy has been so important for me - and it has worked with many, many wounds up till now. BTW Justin, the old theory that Alzheimer's is caused by aluminium build-up has now been discredited - the original results (from only one test, it was) have now been replicated several times, and it was found every time that the aluminium was contamination from laboratory glassware. My mother had Alzheimer's eventually: but she started killing off her memory quite early in her thirties, I suspect because there were too many things she couldn't face, or didn't want to. When she had all her teeth extracted (a common drastic procedure in the 1950s to deal with chronic gingivitis) the memory deficits got much worse, which is apparently a common result of removing all the teeth.

Peace be with ye.

Jason Copeland

Kali my other favourite saying from the English civil war was by the dictator Oliver Cromwell himself. In a letter to the Convocation of the Kirk of Scotland, a bunch of dominies well known for their cold arrogance, he said "I beseech ye in the bowels of Christ, think it possible that ye may be mistaken"!

autism momma

Jason,my mother is caholic also,and I can`t live up to her standards,They are very opionated,and self rightous,so we agree about that.I wanted to laugh out loud,over the holiday,she said something about not buying some kind of beer,maybe Miller,It doesn`t matter,but the reason was becasue they advertise to gays.I thought to my self,are those child molesting preists telling you this.I didn`t say anything,becasue I have never had the courage to go against her.I did a couple of times,but since my dad passed away,and she is elderly,I just let her talk.She thinks everyone should agree with everything she says.

holytoledo

Rania, my child has a very black-and-white, or literal view of the world, and literal interpretation of everything. She likes to understand a figure of speech or expression, however, so I try to take time to explain them to her in detail as they come up. But she'll use this in little power struggles against me, the authority figure. As in when she wants to do something and has to wait and I say "Hold on a minute, sweetie" and she will answer "Hold on to what?" She is VERY SLOW about getting out her ideas because she usually likes to speak them in a complicated, detailed, precise & perfect way. So grown-ups are constantly trying to finish her sentences for her because we're all in ahurry right? And this often ends up being NOT what she was trying to say at all, and this gets her really, really angry & frustrated. She's also expressed being frustrated when people don't believe her. This doesn't even have to be in an insulting or deprecating way as Jason described, it can even be if she has a certain fact in mind that I don't know about, or even MORE difficult for her, is if she is insisting that a certain thing is fact, when I happen to know it's not right (like a math or science or geography fact...), it is really really hard for to accept the idea that she is wrong about something. There is something about being wrong or making a mistake that is so hard for her as an Asperger's child. I'm sure it must be harder than for NT people, because of how extremely anxious it makes her. Maybe a helpful thing, as well as taking time to listen, & being willing to believe what your child says, is to find lots of opportunities to reassure them it's ok to be wrong about something, that making mistakes is normal & leads to learning as I think Roger (?) said earlier. The honesty & truthfulness that is attributed to AS kids is a wonderful gift in many ways, but also brings its own difficulties. Will she hate me when she finds out about Santa Claus & the tooth fairy? I dread the day the truth comes out.

Kali67

Rania,

I think honesty is really important for AS kids, speaking fro myself I was devastated each time I found out that my parents had lied to me. Like Holy Toledo suggests her daughter may hate her when she finds out the tooth fairy and santa claus doesnt really exist. I believe our kids need to know that their parents wont lie to them and when they find out that they do then it breaks all trust.

An example for me of being misunderstood or not believed.

I have always had difficulty with eye contact (I am better now as an adult), some people perceive this to be dishonesty or I am lying because I cannot always look them in the eye and therefore must be dishonest.

With regards to bullying, this is difficult for children and their peers can be so cruel.
I wish my parents had taught me boundries...but my parents had no clear boundries of what was abusive themselves anyway. It would have been helpful to me to identify what is unacceptable behavior and so on. Name calling, verbal put downs, physical violence etc.
Children are so open, they are like sponges, they absorb everything thats being put in and without clear boundries it is difficult to know what not to believe as truth.

Constant positive reinforcement with your children if said often enough will help them identify untruths imposed by others.


Roger what you said about helping our kids identify feelings, wonderful post. Thank you.

Kali

Jason Copeland

Justin, it looks like your mother and mine were cloned in the same factory!

Louisa

Kali, I completely agree about it being important that parents do not lie to AS children. I would much rather have heard about Santa Claus as he really is...a myth with a historical background. Stories are fine as long as one doesn't pretend they are real. I would have enjoyed learning about the way grown-ups like to pretend about Santa, and Easter Bunny, etc., but to find out my parents lied to me was insulting and just reinforced my distrust of my parents.

Rania, I'm trying to think of an example of my parents not believing me. I guess what I remember is not specific incidents but occurrences that happened enough times to leave a general impression, which is that my parents didn't believe me when I told them how I felt and how I experienced life, especially anything in the negative. Things in the negative would get responses of denial or disapproval. Things in the positive or of a light nature would evoke laughter and jokes (especially in the presence of grown-up company). I didn't like being the butt of a joke, especially when I understood it and knew it was perverted. So now that I think about it, most of the worst responses I got were the ones that just flat-out denied my words, making me into a liar. And this still goes on today, so I try not to tell them personal things, especially personal struggles.
It didn't help that I got straight A's in school, because to them that defined me as a complete success in life, and any "struggles" I had were a sign of laziness and poor character because, in their eyes, I had consistently demonstrated through my grades that I could handle "life" very well.
I guess the lesson to be learned here is that my parents held firmly to a belief that 99% of what children say is not true because they have such a propensity to lie and manipulate. I don't think that is true, and I'm sure it's not true of myself. Although, what happened in later years was that I became adept at lying to my mother, and this was from completely giving up that she would ever really "hear" the truth from me. So I lied as much as necessary to keep myself safe and sane. Crazy way to live, and it's sad that it was one of those self-fulfilling prophecies (meaning, she didn't believe I could be believed, and it ended up being true, but only because her belief wouldn't allow for anything else).

Kali67

Louisa when you said
"So now that I think about it, most of the worst responses I got were the ones that just flat-out denied my words, making me into a liar"

This really struck a chord with me. My family did this to me also, I was not allowed to feel anything that was Inconvenient. Anger, grief/sadness these emotions were inconvenient to my parents and they constantly shut me down. I learned to modify my behavior or when possible I would quietly take myself somewhere private where I could feel and not be judged.

This is how we learn to deny our feelings, they become unacceptable, its also how we learn to modify our behavior and stop being ourselves. I spent most of childhood trying to adapt and be what they wanted, most of my teens running on auto pilot in a state of numbness.

Speaking for myself, I would have liked my parents to acknowledge how I was feeling, and not shut me down. I could have learned healthy ways to express my feelings instead of adopting addictions and resorting to self harm.

I don't blame my parents now, I can see they were also conditioned, but I no longer allow my family to shut me down.

Kali

rbalogh

louisa, again, I enjoy reading your posts, so inciteful, and so simply, but eloquently stated.
Children want to be good and to please their parents. Be hones t with them, they'll be honest with you. Disrespect them, be in turn disrespected.....It is such a self fulfilling prophesy!. Own your mistakes and deal with them as a learning experience, for that will elevate you in their eyes, not demean you. They learn to own their mistakes, and not see them as a catastrophy, but part of the human experience, and not linked to self worth.

I never thought about the issues of Santa, Easter bunny, and how some cchildren will feel when they learn that is not the case (lies). What are healthy ways as parents to deal with this issue in our ASD children, and still keep the magic of these holidays alive? I don't know what's best. I'm interested in the thoughts you and any one else following this thread have to share.

autism momma

I have an older daughter,I don`t think she was damaged,in finding out they really didn`t exist.Every child is different,though,some very literal,perhaps if your child is very literal,maybe it`s best to tell the truth.I remember I was crushed to learn that Sants Claus did not exist,but I didn`t blame my parents for lying about it.It was pure magic,and some of the greatest memories of my childhood.I would not trade them for anything.I also have a 4 year old.I hope to make it pure magic for her,while it lasts.Again,every child is different,so there is no answer that fits all.

Kali67

Roger,

I guess we need to question why is it that we need to keep the magic of these holidays alive? especially if we don't really believe in them ourselves.

I guess we could actually do a bit of hunting and gathering ourselves for information. Like, where did these holidays really originate from? Then at least if our children ask then we have some honest information to offer them and not just theories based on tradition.

For example, from my understanding many of these holidays originated from pagan traditions but over time became absorbed by Christianity. Easter originated from the Eostre which was a pagan Goddess of fertility. Her name was derived from the ancient word for spring: "eastre. Hence the symbol of the egg and the bunny.

Halloween also originates from pagan traditions, "All Souls Night" when it was believed that the door between the two worlds was open and the spirits of the dead were free to roam the earth. There appears to be some inconsistency among Christian sects as to how this holiday should be celebrated, for example the Anglican church celebrates this day as "All Saints Day" whereas the Protestant church celebrates it as "Reformation Day" a day where they remember the protestant reformation.

Telling our children where these holidays originated does not necessarily take away the magic in them, we can still celebrate these holidays if we wish, just not support the lie anymore.

Kali

Kali67

Justin,

Thats an interesting point about being too literal. I know I'm too literal and my daughter is too. We have both found it fascinating to find out the origins of many seasonal celebrations. We still buy easter eggs occasionally, mostly because we like chocolate, I used to hide the eggs when she was younger and that was lots of fun for the both of us. Even apple bobbing, during Halloween was a great game for us to play.

I still believe we managed to maintain some of the magic of these holidays, we just didn't fool each other about where they came from

Kali

rbalogh

Kali, I see your point. We need to decide the significance of the holiday and what it truly represents to us. Santa has little to do with the birth of christ. The Catholic Church linked these pagan holidays with thier holy events in order to help absorb those cultures into theirs. It gets so commercialized in the US, it really disgusts me. None the less I put up a tree, but dont get into much of the other stuff. I do make an effort to remind the kids the real signifance of these holidays.

Even though I have AS, I remember believing in Santa and easter bunny, until my older brother told me the truth. I remember being disapointed, but not angry that I was lied to. I think having grasped the concept of make believe really helped. I recall my wife and I really having to work hard to get our son ( age 6) to comprehend this concept and not spoil things for his little sister(age 3).
rbalogh

autism momma

My family was catholic,so santa,was not the only thing celebrated,though we quit going to church years ago.I have a bif family,and we have gathered at the family home for over 40 years for Christmas,Easter,Thanksgiving.Sometimes it`s stressful.Mostly because they family has grown so large.When we all still lived at home,it was always great to be together.The fact that my son is low functioning autism,has added to the stress for me,but I still want us to always gather for the hplidays.I understand,the holidays are not happy times for everyone.I think that is sad,

autism momma

I do agree that it is to commercial.I do not agree with buying expensive gifts.A few toys for the kids is fine.

Kali67

I have a disjointed religious background. My mother Anglican, my father raised as Ratana, which is a pre European belief system among the Maori/Polynesian culture (almost pagan in practice). My parents were not religious, they came from different cultures and even though we celebrated Christmas as a time that families would come together, no one really celebrated it for reasons in which they believed in. I think my extended family used Christmas as an excuse to get drunk, as you can imagine Christmas among the rellies was usually a disaster as a result.

I don't like the whole commercialism factor about Christmas, my sisters are Jehovah's Witnesses and they don't celebrate any of the commercial holidays. As a family we do still get together to spend time with each other, we do this for our mother, we don't buy each other presents. Only birthdays, which is great because it takes the pressure off the family.

I don't think I was angry so much about finding out that santa was a lie. I remember being upset one year because we didn't have a chimney and Santa couldn't come down it to drop off the presents, thats the year I found out he didn't really exist, I was 5. Another example of being literal. I think its just all those little lies our parents tell us that destroy our trust.

Kali

autism momma

As I said,it wasn`t only about santa,It was the family comming together.With a lot of kids,we always had playmates.Playing in the snow,was always so much fun around Christmas,Building snow forts,having snowball fights,Playing king of the mountain on those giant plowed snow banks.Comming in and sitting near the register to get warm,and a cup of hot chocolate.I always baked Christmas cookies.Well not when I was real young.We always got a couple of games that were for the whole family,and would spend the day together playing games,or with our toys.I feel bad for my kids,because my oldest was an only child for a long time.She was around 9,by the time I had my son,and he was sickly,and had behavior issues,Now my youngest is like an only child also.She has my son who is 15,but a lot like her mentaly,but not much of a playmate.She has 4 grown half siblings.We do spend some of Christams Eve at my mom`s,so she has cousin`s and my grandkids to play with.Just no one else here Christmas morning.I didn`t plan on having mt kids nearly a decade apart.It just happened.

Louisa

I told my children the truth about Santa and Easter Bunny from early on. It was not difficult because there were many chances for them to hear and see for themselves what society practices were. I simply explained that pretending that there is a Santa is something that is so fun (for some people) that even when they grow up, they still enjoy pretending that there is a Santa. My children saw plenty of evidence of this. I explained to them that many grown-ups get very disappointed if someone tells their child that Santa is not real because it spoils the "magic" for them and their child. So I warned my kids not to say anything to little children. I told them not to lie, but if in a tight spot, just don't say anything.
Then I explained that Santa was not something I had fun pretending, so it didn't mean much to me, but that it's okay if other people want to play with the idea. I probably told them a tiny bit about the real Saint Nicholas from which the Santa fantasy came.
My kids accepted it all very well and had great fun between themselves imagining the impossible feats Santa would have to accomplish if he were real. They studied this from many angles and really got quite a few laughs out of it. Nobody was much interested in the Easter Bunny. It was a little too weird.

Jason Copeland

Kali I totally identify with your post about Louisa's remarks, and parents being suppressive and stifling. I had the same thing from my abusive unmothers in my first 13 years or so, and then in my teens I started thinking for myself, disagreeing with them etc. That prompted them to start regarding me as out-and-out evil merely because I decided things for myself rather than blindly obeying their fascist commands. Their Catholicism was totalitarian, utterly Nazi. And don't anybody mention forgiveness to me, please!

[Updated on 1/6/2010 9:03 PM]

Jason Copeland

Rbalogh you are totally right on "respect your children if you want them to respect you". The tooth fairy myth didn't bother me, except when they stopped leaving coins on my pillow. The Santa stuff ranked alongside their evil, oppressive religious beliefs as being good reason for me to regard the abusive unmothers with utter contempt, which is the view I have of them still. Peace be wiv ya, dude.

Jason Copeland

Kali my limited understanding is that the chippy rabbi, if he existed, was not born on December 25th - more likely in the month of Scorpio. The Roman Empire moved the date firstly to coincide with the birthday of the Persian god Mithras, since Mithraism was all the rage among Roman army officers; and later they blended the rabbi's Mithraic birthday with the nordic Julfest, to appease the Germanic tribes which gradually became more and more important in the higher power echelons of the Roman Empire.

Louisa

Taking words literally probably caused problems in childhood, but I can't remember examples. I can give an example from my current job, though. One time I was trying to type a document correctly, and asked my boss whether I should word something this way or that. She told a "story" that was supposed to give me a clue, and then told me not to "worry about it." I replied I wasn't worried about it, but I did want to type it correctly. She tried again to tell me a story and then repeated the command to not worry about it. I wouldn't leave it at that because I didn't feel worried at all, but I did want to know what to do, and she wouldn't tell me. We went back and forth one more time, and finally I told I didn't know what she meant and that I couldn't type the document until she told me exactly which option was the one she wanted me to type. By this time, I was quite frustrated and angry, and was yelling at her. Afterwards she pulled me out in the hall to have a private talk. It took some time, but she eventually realized that I was taking her words literally. Up until then, she thought I was being bratty and rebellious, arguing just for the joy of being a pain. As soon as she understood that I almost always interpret words literally, she wasn't angry with me anymore. She said I had the mind of a man. After that, she would just try to relate to me as if I were a man, and we got along much better. By the way, I asked my co-workers who witnessed this event if they knew what she meant by the words "don't worry about it" and they all said yes. They all wondered what my problem was and why was I being so difficult. To them it made perfect sense.

Louisa

This story I posted about my boss and me coming to an understanding of how I take things literally brings back the memory that this was the first time I realized (with her help) that I do take things literally, and that other people do not. It was kind of a milestone.

rbalogh

Theory of mind is the conceptinvolved when we realize the ways othr people see and exprience the world differently then us. It's a fastinating topic. As I read about AS, it was a revelation to me to realize that others percieve the world very differently than I do. The fact that I, a psychiatrist, and a supposed expert on human behavior, couldn't recognize that, astounded me. But with the brain wiring of AS, I literally don't get the mesages which allow me to recognize these profound differences in communication and processing info. We have to learn it, from books,interactions like you had ()Louisa) had with your boss, this network, etc.
Roger

idahobot

jahki, I really relate to your "always believing" what your son told you even when you knew that he was just as likely to be lying. Believing everything people tell me has been one of my traits. Some in my family have caught on to this and will tell the most outrageous things just to see if i will believe it. it has become a big joke. the "how gullible can you be?" game.

Rania Z

Once I realized that my son would take things literally and not understand when we were joking and when we were not - I decided to try to teach him through mini-tests. I started with things that were ridiculous, like when my son would ask me, "Where are you going?" I'd answer, "To the moon." He'd repeat his question and I'd keep insisting I was going to the moon for real. When he'd get agitated, I'd tell him, "Seif, does what I say sound silly?" He'd tell me yes, then I'd tell him, "If it sounds silly, then it's probably not true. It's a silly joke." My husband would tell my son that he was going to go rob a bank (when he'd get money from the ATM machine); Seif again would start to take it literally and then my husband would say the consistent message, "If it sounds silly, then it's probably not true. It's a silly joke." We'd discuss what was silly about it and why it probably wasn't true, etc. We kept doing such things over several months and recently, he shows signs of being able to tell what is a joke and what is not. Sometimes he needs confirmation, saying, "Mom, that sounds silly; it's a joke, right?" I have no idea if that was traumatic for him or not; I just hope it helps him in the long run.

I'm also running through all the expressions like "it's raining cats and dogs" and explaining what they mean so that he isn't puzzled when someone tells him such things. He finds this interesting.

When reading several posts here about not believing feelings and dismissing them... I'm ashamed to say that I have done the same things with my son on several occasions. What I love about this website is that it opens my eyes to what I'm doing wrong, it puts things in the perspective of my son, and gives me clear tips on how to handle things in a smoother way. I've become so much more understanding and more patient now that I know that Seif is not just acting up... to know that he can't help it.

Seif had a meltdown yesterday... I was taking him out for a movie and on our way there, he told me that he was hungry and sleepy and he fell into deep sleep. When I reached the movie theater, I woke him up and all hell broke loose. He kept crying and saying things that were disconnected and didn't make sense at all. My old response (before reading this website) was to say, "Seif, I drove for an hour to take you out so that you can have fun! You want to go home? I'll take you home. You are never thankful!!!" I'm ashamed that I sometimes say such things when he frustrates me. Now I recognize the facts: he is sleepy, he is hungry, I woke him up, he can't help it... I was very understanding despite the commotion he caused. I knew that once he was sitting in the movie theater with a bucket of popcorn and some soda (a treat, since I don't usually allow soda), he'd get out of his meltdown. Sure enough, as he sat down and grumbled, I put in his mouth a piece of popcorn, and SNAP, he was content and himself again.

I think in every other post I write, I'm saying "thank you". What you write is so profound. It has helped a family all the way in Egypt. I'm addicted to the information on this website, and I'm addicted to all of you for being so helpful and understanding.

So, here it is again: THANK YOU!!!!

Louisa

Rania that's a great idea to teach Seif to recognize silly things people say! Sounds like your teaching worked. Also great that your husband also practices this so that he recognizes jokes from more than just one person. You are smart. More importantly, you are so dedicated.

Something I regret with raising my son was that I didn't believe him when he consistently failed to follow my directions. I gave him verbal directions to do something that I considered simple, and it usually involved two or three steps. I lectured and called him a liar and cried, etc. but nothing ever changed. It took me so many years to finally realize that he couldn't follow more than one verbal direction at a time. He would forget the rest, and in forgetting he also forgot that there was ever more than one thing to remember. He would do the first thing I asked and feel satisfied that he had completed the task. Laundry, for example, involved taking the clothes out of the washer and putting them into the dryer. That's the first part. Then set the dryer for 50 minutes. Then turn the dryer on. On a good day, he might transfer the clothes and even set the dryer, but the dryer never got turned on.
I have the same problem with tasks that are unfamiliar to me, and it's incredible to me that I was so unable to understand his point of view when I struggle with the same thing! So many times I wondered if my son was lying to me or being lazy, and I didn't give him the help he needed nor the praise he deserved. Very sad. He knows now, though, that I am very sorry.

autism momma

Other people view the world differently.I guess,thats hard for me to fathom,as well.I guess i`m learning alot on here.Much more so than listening to the news.I supposse if someone lives there life in their own little world,they wouldn`t know much about what is going on elsewhere.I shut it out alot,because it`s to much to handle.

holytoledo

The sense I'm getting from my kid about Santa and the tooth fairy and all those things, is that she's sort of playing along with it, & seeing how far or how long it will go on. I wish I could remember when I stopped believing in those things, I don't think it was a matter of being told the horrible truth, I think I just sort of figured it out at some point, but kept up the ruse as long as everybody else was willing to.... I wonder if there isn't a value in a child finding out their parents have been dishonest, which is, Why should we have complete trust & belief in some outside authority? Are all authority figures deserving of trust? Maybe these early childhood dramas help children to be able to question things the people in power tell them. I think some kids on the spectrum are definitely independent thinkers & will not end up following the lead & doing everything their peers are doing, but there must be many who expect or need to be told what to do. Just like NT people!

Kali67

Jason, thats really interesting I didn't know about the Romans celebrating the Persian God Mithras, I know that the Persians adopted Mithras from the Hindu's or Vedics, Mitra. Had no clue the Romans adopted this god too.

I have another version about Christmas where the Romans celebrated the festival of Saturnalia. This was a week long festival starting from 17 Dec and ending on the 25th.

This week was known as the week of lawlessness, all the courts and authorities shut down and it was during this time that any lawlessness would not be punished. From my understanding the romans committed brutal acts during this time, they would stuff their victims with food, make them commit acts of pleasure and in some cases rape them. The belief was that they were destroying the negative forces by acting these atrocities out on their victims. The Catholic church managed to absorb this festival within their religion but they never really successfully stopped the hedonistic behavior amongst the followers as we still see to day with feasting, abusing alcohol etc.

Pretty brutal, our traditions about the birth of Christ on the 25th have covered all this up.

For some older cultures such as the Egyptians, Chinese and pagan druids all celebrated this period as the winter solstice. Nothing to do with Christs birth at all. I had no clue about the actual date of the chippy rabbi's birth (like that description). I always thought he would probably be an Aquarian, being the water bearer and teacher to humanity, but I suppose he could have been Scorpio.

Kali

Kali67

Rania and Louisa,

I have been reading both your posts and how you have felt guilty for making mistakes with your children. I just want to say that you are both doing a great job with your kids. One of the things I think many parents make the mistake with is that they believe they always have to be perfect. There isn't a perfect parent out there or on these forums and the fact that you are both able to show humility and understanding shows to me that you are both better parents than you give yourselves credit for.

If my parents could just once admit that they lied or made mistakes without making excuses for their behavior I would have had more respect for them. Children aren't silly, its the parents that need to maintain perfection not the children. My father died when I was very young so I was never able to resolve the issues that arose for me with him. My mother is still in a lot of denial but she tries the best that she can. I love her very much, we have had to come through a lot of hardship together to rebuild that trust that was lost. She still makes excuses, she's not good at owning her mistakes, not like the two of you are. I wish she could for her own sake and not mine. I have learned this lesson for my own daughter. I still make mistakes but I have made conscious decisions to own them for her sake and my own.

You are both very lovely and genuine people who want the best for their children, I am grateful that there are parent's out there that care enough for their kids. Keep doing the wonderful work you are both doing.

I'll leave you with a poem from one of my favorite poets, I've posted this before but feel it deserves a place to read again in this thread.

On Children
Kahlil Gibran

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Kali

Jason Copeland

Yo Toledo! I entirely understand what you are saying: but still, for me it would have made a HUGE difference to my life if during my first 16 years I'd had someone, anyone, whom I could trust to tell me the truth, the whole truth and nothing but the plain unvarnished truth, without lies, myths, distortions, omissions and mickey-taking. I'm sure that if I'd had Rania for a mum, giving me conscious training in subtle discrimination, I would have done much better at relating to the humanoids than I did. Choukran, Rania!

Saturnalia! That's the other one that I forgot. I think you're absolutely right to see in that one the derivation of the modern Festival of Materialist Hedonism. Thanks, Kali!
Kali thanks for posting that utterly beautiful pome of Gibran. I've been wanting to find that again, and I've put my copy of The Prophet in a safe place, which is a dumb thing to do at the best of times!

Louisa

Thanks for your kind words Kali. There's a children's song that we listened to long ago where they used the first twelve lines of that poem. It's a great song, sung kind of like a lively spiritual.

Rania Z

Wow... I'm touched beyond words Kali & Jason. For some reason, I'm even tearing! I guess I needed to hear that from someone...

rbalogh

Thanks Kali, One of my treasured gifts from my father who has been gone 18 yrs. is The Prophet. Gibran weaves visual metaphor into beautiful messages about profound truths which never change over time.
No doubt that he was "of the spectrum".
rbalogh

holytoledo

Kali, very wise words, thanks for encouraging the struggling parents out here.
Pagan holidays, I didn't know Saturnalia was connected with winter solstice & the the X-mas season.But the Yule-tide is pagan of course, & assimilated into the new religion of christianity as it swept over Europe & the British Isles. The Yule was also all about "misrule" & turning everything upside down & lawlessness. I think the "blazing yule log" had to do with encouraging the sun to come back. I have to say the solstice has come & gone but our days still seem pretty short (and cold).

Quirky2212

Ranzia - great idea practicing with your son about the jokes. I am going to start that with my son. What a wonderful way to teach.

About the Santa / Easter Bunny / Tooth Fairy... We have gone through that debacle in my house over the past year. My older son (now 12) found the whole thing absolutely hysterical. He wondered about Santa for a couple of years, and when the truth finally came out - he just said - you mean grown ups lie to kids - and he thought that concept was incredibly funny. I'm not sure why, but it was a great relief. My 9 year old, on the other hand, was horrified to find out that we have been lying to him all this time, and said that we should have told him the truth from the beginning, and why would any parent lie to their child, etc...
So, I guess all kids are different.

Quirky2212

I wish that my parents had allowed me to experience my feelings, whatever they happened to be, and helped me to learn to manage the feeling instead of telling me that I was too sensitive and over reactive. This just led to my learning to not feel.

I wish that my family had really listened when I said "I CAN'T" do something. There is a difference between can't and won't - and sometimes even though I was very smart in some ways, there were academic things that I really could not do. People would get frustrated and think that I just wasn't trying.

The worst thing for me was when I was accused of lying. There were many times when perhaps I didn't do something the right way, or I made "foolish" mistakes - but I always told the truth. When people in authority didn't believe me, or accused me of being misleading or dishonest I became enraged. I wish people could have believed what I was telling them.

autism momma

My daughter is sensitive,and often says she can`t do something,even when,I have seen her do something before.I know,that sometimes she is frustrated because she can`t do something.I need effective ideas to handle the situation.I think i was sensitive also,but my parents didn`t handle it in an effective manner.I probably mirror them.I know no other way to deal with it.I need ideas.

Quirky2212

Justin -
Sometimes I am able to do something (complete a task), and at other times - because of level of functioning at that moment - I am not able to complete the same task that I have been able to complete previously. What is helpful for me when I say that I can't do something, especially if it is something that I have done before, is for someone to help me break down to task into pieces. Sometimes it is simply that I am overwhelmed with the whole of the job, and once it is broken down into pieces I can better manage. Not sure if this is helpful or not - but it's a thought.

gyro812

TRUE STORY ONE OF MY CASE STUDIES
What I wish Parents, teachers etc would know
Hi it’s Gyro812 the medicated but dedicated Aspie here again. This is a case study of one of my actual cases a few years ago. I was approached by a Psychologist to help assist him with a boy with Aspergers who would not work in class and the only words that came out of his mouth was Pokémon from the children’s TV series. The boy was also always miserable and the Psychologist was at a loss on what to do for the boy. I run a trust which supports Aspergers children at school and will try to use my own insights to create theories which the Professionals can investigate. In this situation I worked one on one with the boy in a room which was visible to other staff members, but had him on his own which was useful.
I introduced myself to him and he started mumbling about a Pokémon. I told him to stop talking and said hello and again he started telling me about Pokémon. I told him to stop again. I said you really love Pokémon don’t you. He replied yes. I thought back to my childhood and then said , you go home and mention Pokémon and your family run for the hills and your friends run for the hills as well & the teachers they won’t even let you talk about it and so on. Am I right? The boy just stared into space and said nothing. The generous school gave me only half an hour a day with the boy, but I said to him, I’ll tell you what I’ll do. The first ten minutes I see you is your time. In these ten minutes I want you to teach me everything you know about Pokémon so bring your Pokémon book. The last twenty minutes is my time and you have to do your school work and work well for me. Is it a deal? The boy replied yes. After a couple of sessions the boy had caught up with everything we were given and the staff and Psychologist were deeply shocked and wanted to know how I was succeeding. Because I knew the school would not allow a compromise I merely said I must have connected with the child.
I visited the boys Dad and asked him what he did when his son mentioned Pokémon? He said I've tried to introduce him to other interests but I given up trying. I asked how much time do you spend with him with Pokemon? He replied no way I’d be bored to death. I said that’s why you have a very sad child and If you want to help him, then spend time with him and get bored to death. I handed him a Pokémon book I purchased and said if you don’t want a sad child learn it and I need you to make a commitment to me that you will do it. The Father agreed. It was like just over night the boy changed to a happy co operative student completing all his work on his own. Two years later he was highly achieving at school. I hope this will speak to people. These splinter interests take up a lot of the child’s focus, but a common issue which isolates them socially. Aspergers people suffer from terrible loneness. With this boy his will to live.
Gyro812

Jahki Brown

I still tell my 24 year old boy that Santa is real and if he doesn't believe in him he doesn't get his Santa present. I justify it by saying any thing we can think up is real some where. Santa's a concept like every thing else and the proof of his existence is that Santa Presents happen every year, How real does he have to get to prove himself ?...lol...Its not like he can actually deliver presents to all the houses in the world in one night physically, the only way he can do it is in our imagination

Kali67

Jahkie,

In a sense I agree with your version, however, my experience is my parents used Christmas to manipulate me. Okay perhaps this is wrong, but why is it that people wait for this time of year to do something nice for each other. Why can't we just do it without the commercial motivation? There are 365 days in a year and the whole world seems to let the leave it to this one day to do something nice on the 25th? Something wrong with that equation. It loses its magic for me if its presented on a day that everyone expects it. My experience has been the nicest surprises are the least expected. They have more meaning to me, again this is my experience.

Kali

Jahki Brown

Kali
I agree with you, Christmas has been an ongoing nightmare for me and certainly for me and my son it has been so awful because I had no family for him and he always felt that so much., The Santa Claus thing is my sense of humor since it has fallen on me to come up with some thing to try to make it alright for him on some level, The alright thing has been the present. I've mentioned before that my version of parenting was to try to raise a child who felt as if he could cope with any thing the planet can throw at him but I have to say it been a stretch at Christmas, We're alright the last couple of years because his girlfriend provides the family for him and I get to go out to dinner with friends but he still has the same dislike of Christmas as most other spectrum people have, I just haven't encouraged him to be miserable at this time of year because it feels much worse. There's to much energy around, every thing is exaggerated and its probably a lot more uncomfortable not coming up with some thing to celebrate because the sense of not fitting in is really intense and feels awful, I prefer he didn't feel that, but he's an adult now and its up to him. Santa Presents still happen... with a touch of humor to go with them, these days he's aware how hard it was for me to deal with the Christmas thing every year on my own with an only child and he appreciates the present.
Jahki

Quirky2212

Gyros - Thank you for the story. Great lesson.

Jahki - your son is a lucky boy.

autism momma

Thanyou quirky,and gyro for your response.I think part of the problem for me,is I am also overwhemed,and I need her to do something for herseld,because my son can`t do alot,and I have to do so much for him.When she says she can`t,I get a little stressed and overwhelmed.I need to keep in mind that she has some problems also.gyro,I do read to her most everyday,and we watch her favorite shows together.I play dolls with her sometimes.I constantly answer questions for her,because she constantly asks.The main thing that frustrates me,is trying to teach her her letters and numbers.She can`t remember them.I need some creative ideas.These problems pale in comparison to my son`s problems.His seziures seem to be getting worse.I thought it was becasue they gave him the H1N1 vaccine at school,now I think maybe because he split his head open in sept.Had to have staples to close one of the wounds.He had one in the kitchen,and my daughter came running into the bathroom to get me.She wanted to help carry him to the living room.I said he is to heavy for you.He is to heavy for me,I had to drag him into the living room,onto the carpet.Usually he vomits after a seziure,but he didn`t yeaterday.He is usually out for awhile after a seziure,then after awhile,he gets up like nothing happened.Last summer,he had one outside,and I had to pick him up and carry him into the house.Next time,I may have to get a neighbor to help.He is around 5 ft. 95lbs.A limp noodle after a seziure,and dead weight.I`m so sick of watching jim suffer through all this crap.Painfull hearing,no way to communicate.I don`t know if he is any pain or notMost drs don`t give a damn,they only care about money.

Jahki Brown

Justin
I am ongoingly amazed at your strength,... I know this isn't going to help, because you won't want your daughter to fall behind in her school work but I refused to do any school work at home with my boy except when he wanted me to help, I said that was their job and left it at that, Although I did spend a lot of time at the school. Could you contact the school and see if they can get some extra help for your daughter since the work and stress load on you with your son does not allow the time and energy to be picking up the academic load for your daughter. She's obviously a gorgeous little girl who wants to help out with her brother, that's more valuable than academics.I do understand she has to keep up...but I'd be focusing on what her strengths are too, It unbelievable that you don't have better support with your son, I really feel for you.
Jahki

Louisa

Justin tyme, have you tried using songs to teach your daughter letters and numbers? I memorize best with songs. Can you see what's available at the library?
One thing we did for our children was get a little binder and fill it with index cards that have holes to fit in the binder. Then we drew an outline of each alphabet letter, the fat kind that you can color inside. The next card after was blank, and the child would draw a picture of something that began with that letter. So they could color in the letter if they wanted to, and they could choose their own alphabet memory word. We also had various flash cards about numbers, letters, sequences, etc. and they were very colorful and fun to play with.
Another thing we did with index cards was have the child make her own dictionary of new words. Anytime she learned a new word and what it meant (in the course of talking or reading or whatever) she could go get a card and either I would write the word down or she would, and then the meaning, and maybe a picture if possible. This was to impress her with how her vocabulary was growing. We would run through the words every so often to see if she could remember what they were and what they meant. It didn't matter if she couldn't read or spell. The words were often way above the learning level of a four-year-old, but I would either tell her how to spell it or I would write it down. I would read it for her unless she had memorized it already.
One more thing we did was collect alphabet posters and hang them here and there. My favorites were the kind that used a picture of something that has the shape of an alphabet letter, like the side of ladder looks like the letter A. I still have my favorite alphabet poster hanging in my dining room because I think it's so cool.
The main thing was that we followed our children's interests and worked around that. My kids loved books and pictures, so we were always working in that arena. If your child likes something else, say stuffed animals or dolls, you could maybe come up with names for them that follow the alphabet. It's hard to be imaginative and come up with ideas, but if you just mention any idea, even if not possible, it might trigger your child's imagination. Usually I found that our kids didn't want to follow our ideas. So we learned to not cherish our own ideas about things but just mention them so as to get the child thinking on his own. Then when the child came up with an idea, we would support it whenever possible. Many times kids come up with impractical or impossible ideas, and then we just encourage them by saying "I wish" we could do that. Turn it into a game of imagination.
Which reminds me that my kids enjoy playing the verbal alphabet game, especially when we're doing work because it gives them a way to play while working. You pick a topic, like boys names or fruit or animals, and I start with A, so I say an A word in that topic, maybe Alligator. Then you start the alphabet with my A word and add your B word, like Bear. Then I say Alligator, Bear, and add my C word. Each person has to remember all the words chosen previously and add a new word on their turn. I'm sure you know that game.
I am sorry you have had bad doctors. I have too. There are good ones out there though. There really are. You just have to find them.

rbalogh

There were things I wanted my daughter to do which at times she couldn't do. It was rare that it was a refusal. Something upped her anxiety level, something was happening at the same time, perhaps I worded it in a confusing way. Sometimes she was worried about one of her own problems. I really had to watch my tone of voice. She would think I was angry and withdraw into self, when I thought I was trying to give a clear, yet important request. Have you talked with her about what happens to her in those situations? Perhaps she can give you some information to help solve this problem.
rbalogh

rbalogh

Kali, I just noticed something. Your picture with your postings, It has changed! I can see you! Can you tell us what that's about? Roger

autism momma

Thankyou louisa,and rbalogh for your suggestions.I have a hard time comming up with ideas on my own.I think I am more awhere of my tone,since I notice my husband`s tone,which is scarey.All he has to do is open his mouth,and my son is fonforming to what he wants him to do.Many times I can`t get him to do something.I don`t like the way he talks to them at times,and I go off on him.Great idea about the animal alphabet game.I have flash cards,puzzles,and some videos that teach letters and number,but for the most part,she is uninterested.Getting a bit better though.

autism momma

Jahki,I can`t imagine a teacher doing that.Mine let me go early,as it was almost time for the bell to ring.I had pretty compashionate teachers in elementary school.Getting into jr high and high school,I has some men teachers that I didn`t find compashionate at all.Another problem I had,and I`m embarrased to mentioned it,but here goes.I had problems with loose stools,and really bas smelling one at that.I was to embarrassed at school to go,if I had to do no.2.I had this problem up until my 30s.My son seemed to have this problem much worse than me.It wasn`t until I had him tested for food allergys and channged his diet,that this problem cleared up.I decided to elliminate all those foods myself,and problem solved.I did suffer through my childhood with this problem.I was to embarrased to say anything,and my parents made me feel ashamed.I would hide my underware in the attic.My daughter sometimes has a problem,and I will hear my husband yelling at her,and I go off on him.Besides that I always had a problem with an aching neck,and back,which was worse when I had the flu.Often I went to school not feeling very good,and If I had to go no.2 I would hold it,so I was pretty miserable,and it was hard to concentrate on my school work.I was for years always trying to crack my back,because it ached all the time.Now,I use herbs to detox,and the aching neck and back problem are not an issue.If it starts to be an issue,I know I need to detox.Gluten and or dairy allergys can cause loose,and bad smelling stools.I find that I can cheat,at times as long as I use herbs that help with digestion.I always loved chocolate chip cookies and milk,Boy,do I suffer afterwards.Bent over with stomach pains and running to the bathroom a dozen times.Now,I use lactose free milk.Mostly I don`t drink it at all.Every now and then,I have a craving for chocoalte chip cookies and milk.If your child has this problem,and they are made to feel ashamed,over something they have no control over,well it can damage their self esteem.

Kali67

Justin,

something that worked for my daughter when I was teaching her her letters. We would think of an animal she liked then draw an outline of the animal and write the word inside it. Some of the words like snake were easy, we could shape the letter "S" as a snake, this made it easy for her to identify. Also sounding the letters out in each word, she learned to identify the letters in each word as a sound first then we'd put them all together and say the word. Its pretty simplistic, but it worked for her

Another thing we tried was I would draw the letter, then we'd color it in together. My sister taught me my letters this way, teaching me to stay between the lines when I colored. the letter "S" would be surrounded by sunshine, or things she could identify with the letter S.
I would also sing the alphabet to her daily, I used it like it was a nursery rhyme and encourage her to join in. My daughter loved singing so it was never a problem to get her to join in.

My mother used to play this game when we were in the car together. We would read number plates on a car and make up a catch phrase to remember it. For example I can still remember our number plate when I was a kid. HJ7321. The catch phrase we used to remember it was "Harry James was 73 and his wife was 21" I played this game with my daughter also.

I hope this helps.

Kali

autism momma

Thanks Kali for the suggestions.We do sing the alphabet.She can sing the alphabet.The letter she can remember is O and identify the letter that starts her name,but she can never remember the name of it.That is all so far.She can count,she just can`t remember what the numbers look like.

Kali67

Jahkie,

I relate to Christmas being a horrid time of year for you, it is for me also. I can get very depressed this time of year and this year was no real exception. I think its because it reminds me of too many Christmas's gone bad with my father and extended family. This last year wasn't as bad for me, I had no pressure and I didn't celebrate it, but I still felt depressed. Would be nice to get through it just one year being happy.

Kali

Kali67

Roger,

there isn't really a lot in the photo other than I have been feeling introverted over this Christmas break and inverted the photo. I often change my picture to suit how I am feeling. So I guess the photo change is now as it should be and I am feeling less introverted and coming of of my shell again.

Kali

autism momma

I can relate to that,as I have always been introverted.I`m more of a hermit now,then when I was younger.I was more confident in my 20s.Also,I didn`t have a low functioning autistic son.People look at us like we are freeks.It is hard to get boths kids bundled up,load them into the back of the truck.The front seat doesn`t go forward very far,so I have ju,p up,and squeeze in to the back of the truck,jump out.Jump back in.Nothing to hang on to,to get in.Jump back in the back to undue their seat belts,jump back out.To much trouble.I don`t mind in the summer.Still maiting for my husband to fix my van.i`m also not used to driving a big truck.I`m a hermit.

Jahki Brown

Justin
Something that might help, I remember learning some where that there are three basic types of relating to our environment and each other; visual, auditory and kinetic and a person can always learn more easily when its taught using their strongest sense type, so if you can work out whether your daughter relates more strongly to seeing, hearing or touching, you can incorporate that into the learning experience. You can usually pick up where their strength is by their language or behavior eg 'I see what you're saying', 'I hear what you're saying' or they use a lot of 'physical contact'. I'm visual and understand and remember what I see rather than what I hear, as an autistic child I couldn't hear or follow verbal instruction and my own language was impeded and unclear. Also children usually love physical contact as comfort and support when they are trying to do some thing difficult... like learning.... So maybe touch reward and alone and cuddle time. Also tickle or joke or faces depending on what sensory type she is and other aids that contact her sensory type drawing, pictures, taping her voice and replaying it if its auditory, play taps or kisses . Probably trying to make it fun is best because people learn better when they're happy and she probably needs special time with you because your boy takes so much, Maybe a time every day if you can manage it, when its just the two of you.
Jahki

Rania Z

Hey Justin! You may be a hermit from the outside world, but I'm soooo glad you're not a hermit here!!! You've taken me by the hand through a lot of my questions, and I love you for it!

Regarding learning letters and numbers, boy did I have the same problem with my son!!! I'll share with you what Seif's Learning Disability teachers have been doing with him for letters & numbers:

1) They would put sand in a small container and show Seif the letter that he is to trace into the sand. He'd do that several times while saying the name/sound of the letter out loud. They'd also ask him to trace the letter in the air.

2) They would ask Seif to create the letter/number out of salty dough. He loves doing that because he gets to play with it afterward.

3) They'd trace the letter or number on his back & ask him to identify what it was.

4) They asked me to write basic site words on cards, draw a picture to remind him of what the word is, and tape the cards all around my house. I was to show the words to Seif on a daily basis until he memorized what the word looked like as a whole. This could turn into a game eventually, once your daughter remembers the words; you can call one out to her and see how fast she runs to it.

To get Seif interested, I give him small rewards. Every time he collects 10 marbles in his box (a marble means he tried hard, or did well, etc.), then I'd buy him something small. He'd jump over the moon for a marble! :D

I hope that any of the above helps your daughter, Justin. It has helped Seif, but it was a slow process.

Good luck, sweet hermit!

autism momma

Thanks rania.Like I said,I wasn`t as much of a hermit when I was younger.It mostly started after having a low functioning autistic son.He was very sickly,until he was 5 when I figured out he had food allergys.Also he had severe behavior problems,which improved with diet and supps.Looking back I think the seziure meds he was on may have contributed to his behavior problems,and also his being sickly,as I recently found out these drugs lead to vit D deficiency.Also I had to quit my job,because of childcare issues.I find the longer i`m out of circulation,the harder it is to rejoin.I also hate the cold,and it`s been pretty cold here lately.I loved it as a kid,but can`t tolerate it much anymore.I think I get out more when the sun is shinning,and even more on a hot day.I come out of hibernation.Thankyou for the ideas about teaching letters and numbers.I do think the high doses of EFAs have helped,because she used to have this problem with colors and shapes,and now she knows most of them.Thankyou again.

birdman

Years ago, in the 80's, when I was in my 20's, I was seeing yet another head Dr.
I had noticed something for a wile up till then and asked that 'learned man' what he thought. You know, tried to check the 'facts' with him. He was the 'expert' on issues pertaining to my mind he thought right?

So I asked him.

"Doc I watch people on TV and movies and it seems that..... well", I said.
"Could I be autistic?", I nervously asked.
Remember, this was in the mid 80's and less was known then what is not known now about such things as 'spectral disorders'

He looked at me and ... well he..

He laughed and said, "don't be 'stupid' that is just dumb. You cant be that. You are not retarded. That is just your mental illness talking"

That from the man who was supposed to tell 'me' what I did and why and why 'my' behavior needed 'adjustment'
That know little nit wit thought 'he' had the answers. Ha, they play that game of 'we didn't know at the time' but we 'tried' BS

Nice cop out for 'their' ignorance.

Even today there is so little known about AS and how it fits in with everything. Give it time they who get to decide such things will change 'their' rules and classifications again.
Hysterical parents. Desperate kids and adults. Know little or nothing MDs and others.
It can be very frustrating to even know 'who' has accurate information and who is 'projecting' their own ignorance.

In this day and age of self help books and 'lets just all feel good and be well' nonsense aimed an NT's it can be more than frustrating to be misunderstood using the best of all or any possible word constructs.

I find it tragically and sadly humorous that so many people ask the 'experts' even what AS is when those gentlemen themselves argue over what it isn't and is.
I find it even more sad still that more than a few could themselves be diagnosed with, most likely, more than a small bit of AS themselves if they found themselves in a different time or place.
They are to 'busy' for a social life right? They are 'focused' and 'dedicated to their work' right.
See?
It's no wonder they are 'scrambling' to 'reassess' what it even means to have AS.

Dr's and scientists can have it too you recall?
You tell me. What is the the more simple view:
That all AS persons are all very similar or
that 'it' has many variations that affect different people in different ways that is not easily apparent.

Makes you wonder.
I know it makes wonder.

[Updated on 1/18/2010 2:07 PM]

[Updated on 1/18/2010 2:09 PM]

autism momma

I keep hearing people say,get professional help.Yet the preofessionals don`t know squat.Many them selves probably have AS and still don`t know what it is.You are so right birdman.Talking to other that have it,sharing your experience with others,and having them share theirs.That is the best therapy.If a person is having severe reactions to food,severe reactions to the perfume people in the waiting room at the doctors oofice are wearing,and the flourescent lighting is throwing them into a meltdown,what are the professional going to do about it?They havn`t a clue.You wasted 2 hours sitting in the waiting room,trying to control your child,who is having a major meltdown.I spent 5 years and e months going from dr to dr.Even psychiatrists with my son.What did any of them do for him,absolutely nothing.Then there is a deffenence between aspergers and autism,and that just may be the severity of reactions to food,smells,lights,sound,and the ability to deal with all these things asaulting your senses.

autism momma

My parent drug me off to the shrink,when I was 14,and I wouldn`t talk to her,so they finally quit sending me.No way,I would have been diagnosed as autistic.This was in the early 80s.Not that i`m totally againt talking to one now,but I was being forced then,and being forced to talk,just doesn`t work with me,I have to want to talk to you.

birdman

Don't get me wrong I think the psychiatric community can and does work wonders when they have a clue what they are doing.
I do, unfortunately, think they can be, and are, disastrous when they 'get it wrong' as it were.

Surgeons look for surgical fixes.
Shrinks look for psychological answers.
Neurologists look for neurons out of place.
Sociologists seek social solutions.

You get my meaning from my little quips, I hope.

When they are right they can be great.
When they are not they risk doing much more than a little harm to others.

I just wish they could possess more than a dram of open humility and great measure less amount of open apparent arrogance in their ranks.
Recent events in TX in mind.
Understand?

Their egg heads stand a real risk of impressing few and helping fewer if they are not careful how they themselves act and well as being a bit more humble.
They can do real damage if they are not careful.
They hold themselves up as the 'official experts' and people look to them for the 'official' and 'factual' answers.
They can do as great damage to others being in such a position.

Thanks for listening to my rants on this subject.

[Updated on 1/19/2010 4:11 AM]

autism momma

The point is,many of them don`t know anything about ASD.The ones that do know,I feel can be of great help also.

autism momma

I spent 5 years looking for one to help me,and I didn`t find anyone.My point is people with severe reactions to foods,and noise and lights,and smells,are more likely to get help from treating the underlying condition,and psychiatry,and conventional medicine are inefective for treating these issues.

laurelasintree

WOW! It's so weird coming across a link with your own face and thoughts. I am the woman in the first clip, which was posted on You Tube before the website I was interviewed for was launched. I was invited to the launch party, along with the guy in the other clip. If you want to see/learn more about this website, as it covers lots of health related issues, click on http://www.healthtalkonline.org/