Hard to Deal

I have read alot of your posts, and I can really relate. I have a 9 yr old son who has been diagnosed with aspbergers, OCD, and a few others. I have been on the roller coaster of meds, and psychyatrists, etc. It seems like an everyday struggle. I noticed early on my son was different. When he was a baby he only wanted me, any one else touched him he'd scream. He was always so organized, and not very affectionate. I just pushed it off as his personality. When he was diagnosed I denied it. No Not My Child. I read everything I could get my hands on. I finally came to terms the professionals were right. I fought meds as long as I could, but when he started school, oh school has been a real fight. K-1 the school was sure that the diagnosis was a joke and he was just a behavior problem, he was home more than school because they refused to deal with him. 2nd grade he spent 2/3 of the school year home and while fighting the school system , I decided to switch schools. He was held back and repeated second and is now in third grade. Its always the same routine , new teacher, go over everything with her , the calls about his random outbursts, and explainations about how they cant deal with the episodes. It seems evry one says they understand and then when they have a small tantrum, its forgotten that that is a product of the disorder, and some how you feel lost. wondering what else you can do, will they ever lead normal lives, are you failing them. I love my son more than life, I get so overwhelmed though . He has an older brother and a younger sister, and they fight alot, which siblings do but with him its a different level of fighting. He gets angry and tells me he hates me and  tells me to shut up. He hates to be hugged or kissed. and weight issues the meds have caused him to go from a average size to 145 lbs. in 1 1/2 yrs. and he is so weight obsessed. He hates his weight and cant understand the time it takes to get where he wants to go, he wants to lose it now, and thats it. I know this is alot of mumbling, but as any parent knows its hard to raise a child, but when you have a child with Aspbergers it seems to triple the hardness. Every thing is new. How to discipline them, what do they truely understand about what they did wrong, as in my son he is always sure he did nothing wrong , its always some one elses fault. I just want to help my son but I wind up feeling more and more like im failing him.How do you get past that blame when out bursts seem to keep happening? How do you know if your really helping them?

[Sally44]

As your son has a couple of things going on making his difficulties more complex it is going to be really hard to find any mainstream school that will understand him.  As you've said, I got the same.  They 'say' they know about autism/aspergers.  The best one is when a teacher says they have experience because 'they once had a pupil with Aspergers'.
I would recommend you get in touch with the National Autistic Society in your country to find out what your son's educational rights are.  In the UK they also have a list of schools that have more experience/expertise in autism/aspergers than your typical mainstream school.
Do you think the medication has had any benefit to your son at all?
Alot of the 'behaviour' will come about because of his difficulties dealing with day to day situations in school that will cause frustration, anxiety and stress.  Look at the teachers and their attitude to his diagnosis along with the learning environment as a whole as to whether it is the right one for your son.  For example if he has problems with noisy classrooms and lots of children, then he may need a much smaller school with smaller class sizes.
I personally, would rather move my child to a school where he can cope without medication rather than medicate him so that the teachers in a mainstream school have an easier time dealing with him.  There is also no knowing what the long term effects of these medications can have on our children.  As you have said, the medication has caused the weight gain that is now affecting his self esteem and behaviour.  In an ideal world, in a school that he enjoyed going to, do you think he would need medication?
And the harder he finds it at school, the more attitude and anger you will get when he walks back through the front door.  He can't bottle it all up for ever.
When he explains something to you from his point of view of why he isn't wrong, does it make sense to you?
There are things like social stories to teach concepts through a story.  And you will already know that alot of stuff they have to be taught because they don't pick it up automatically.  If they could they wouldn't have the diagnosis.  They can also have varying difficulties with Theory of Mind.  Google it to see what it is.  But if you have difficulties with ToM, you are going to find it hard or impossible to see another person's point of view.  You could try a 'lets pretend' scenario when he cannot see another person's point of view and tell him to pretend he is the other person and then give him all the information the other person has that brings them to a different decision.  Sometimes, when they are presented with all the facts they can see the difference.  Some things just have to be taught as a rule eg. taking turns, sharing.
I know it is hard.  And I completely understand the 'new teacher' and going through the whole life history again, and again, and again.
Your son shouldn't be spending so much time out of school.  That is why you need to find out what your legal rights are.  If his current school cannot cope with him then you may find you have a legal right to start looking at Private schools and the State will be forced to pay their fees.  Afterall it is not your fault if your State does not have enough provision for children on the autistic spectrum.  And usually, by law, if the State does not have that provision you will have the right to get a place in a Private School.
This may involve appointing a lawyer or finding an advocate and getting private reports.  That is what I am doing at the moment.  My son's educational tribunal should be sometime January 2009.  I am attempting to get him into a Private School.  In the meantime I have moved him to another mainstream school in our city, because his previous one was useless.
If that turns out not to be a viable possibility, use the NAS to find out about schools with experience in autism and also get in touch with parent support groups in your area and find out where their children are going to school.

[MaryannesMom]

I can so relate to everything you are saying.  My daugther had a terrible time at our local public school.  The special ed teacher did not understand her at all, and would lock her in a 10 x 10 room up to 4 times a day!  She would run out of school with no shoes or coat in the winter, just to get away.  Then the principal would suspend her for 3 days because she left school.  How the hell can they suspend a kid for their disability?!  We moved her to another school in our intermediate school district (the next town over) that has a classroom that works really well for her.  The kids are rewarded for their GOOD behavior, earning tokens that they can use to buy things (time on computer, video games, snacks, etc.)  It is also run by a teacher and aides that understand my daugther and really connect with her.  The teacher brings her dog in 3 days a week, which the kids love.  The teacher also plays video games with them, or whatever their faviorite thing is, she will get involved in it with them.  Of course the goal is to teach the kids to get their behavior under control and then get them back mainstreamed in the regular classroom.  I honestly do not see my daugther ever being mainstreamed, unless every single teacher "gets" her, and tries to connect with her on her level and her interests.  We held her back this year so she could stay in this wonderful room, but I have no idea where she is going to go next year.  You are right, it is a constant struggle, you never know if you're doing the right thing, and everyone on the outside is sure that you must NOT be doing the right thing!  Just know you are not alone.  Hopefully that helps.  :-)  Take care.

[SueNYC]

Get an advocate.  Make a paper trail.  When the school makes a complaint you need to were a letter to the teacher and cc the principal ever single time.  Our lawyer practically cried for joy when we handed him the stack of letters - it is called contemperpus evidence.  School administrators seem to develop amnesia when they are questioned about your child.  Ask for a Functional Behavioral Amalysis - watch school officials groan - they have to do it.  And then ask them for a neuropsych - they may so no - until you tell them that you will ask for an impartial hearing to pay for one.  Don't get frustrated - just put them on the hot seat.  After awhile - you start driving the dialogue - not them.

[Mozartcowgirl]

i am 37 years old.  I have had aspergers all my life..  my relationship with my mother.. and step father.. and biological father.. was very strained.  i dont know if it was me.. or my parents.. but.. it was certainly strained.. and i grew up feeling very alientated from everyone.  my mother at times i can recall.. was a very loving woman.. and i can also remember her being VERY frustrated with me.. i fought alot with her and to this day i have no idea if it was all me.. all her.. or just a bunch of us together at the same time..lol.. when i was a kid.. i saw everything VERY differently.... and i still do.. i still have affection issues.. i LOVE my children SO much.. i shower them with all the affection i have in my body.. my 18 month old son is showing signs of aspergers... i took him in to the doc.. and he agrees.. very high functioning..highly independant.. some vocal things going on ... extreme intelligence.... ect etc.. well.. it hurts.. it really does.. when he pulls away from me.. i now see a tiny glimpse of the frustration i am sure that my mother felt.  i try to just remain aloof about it.. he can  be very loving at times.. but in a different way... his own way.. i am praying that school isnt a huge thing for him.. I have 5 other children and have been a constant advocate for them.. but.. they never exhibited aspergers signs....

in school i was put in a solitary classroom... my mother made sure i only ate the right kinds of foods.... i was made fun of......... i was a loner... in a way.. i liked it.. and in another way.. i was very bitter.  its hard to be aspergers.. you live in your own world.. and dont get how others live in theirs.  

i still struggle to this day.... its so hard being a parent with a child who has aspergers.. and its difficult being that child.

you need to bring out his natural talents.... work with that.... i am very musical... my mother saw this.. and i was given every opportunity to show my feelings in this way... i went on to teach classical theory and piano.. so that can be a really good outlet...

boredome is a HUGE problem with those with aspergers... our minds are going so fast all the time we become very angry... frustrated.. and tend to take things out on those who do not deserve it.. half the time our thoughts are so jumbled we ourselves do not understand the anger we are feeling... we feel dissconnected.  

try your best to not openly show how pissed you get.. believe me.. i know its gotta be hard.. but try not to .  it just makes your son that much more frustrated as well.. because its VERY difficult for him to understnad how to talk to you  about his feelings when he himeself doesnt understand them  

I am sure he loves you.. so very much.. its just in his own way.. and i am sure.. that if you are having a hard time seeing that.. you will one day.... you will...

it took me years and years to talk to my mom.  and even more to talk to my father...
it will happen.. just let him discover his own path..

[Sally44]

I was interested in your comment that 'boredom' is a big problem.  My son is 7.5 years, diagnosed with ASD.  He too complains that school is (a) boring, and (b) too difficult.  My understanding of this is that, yes he is bored, but that the school is not differentiating his work in a way that he can access.  What would your advice or suggestions be?

[MaryannesMom]

I agree that boredom is huge for someone with AS, and that is why I think many Aspies are into the computer.  There they can access a constant flow of information, without having to deal with being socially correct.  When I hear that a parent doesn't allow their AS child to be on the computer (because they are obssessed with it), it drives me nuts.  Sure, time can be limited, but I think it is very useful for them to use it.  I can see the difference of my husband growing up with AS and not having computers (so he was constantly in TROUBLE), and my daugther, who has the computer.  She has so much knowledge that she has gained this way.  People say, "Don't you worry about what she may find online?"  The funny thing is, with AS, they are very rigid about what is appropriate (right and wrong), and she will not go places online that are inappropriate for her.  (We know, we check her history.)

[Sally44]

I too find it frustrating sometimes because as parents we are so much more up to date with how our children function.  Then you get involved with professionals who are years out of date, or worse still have no idea or have their own agendas.  
I have been saying for years that just because my son has autism does not mean he doesn't want to socialise.  He wants to but doesn't know how to.  There seems to be this preconceived idea that they are okay to leave them alone and not expect very much from them.  I think Aspergers children do better because they are much more verbal.  If your child also has a speech disorder then they are happy to leave them 'cutting and sticking' in class for years.  Yet I can have conversations with my son about climate change, the power of gravity etc.  No wonder he gets bored at school!

[Mozartcowgirl]

Get him in an aspergers group.. with people his age.. and .. even those ABOVE his age... if you feel that he wants to interact with younger children with aspergers.. then by all means.. do that as well.. i LOVE working with those who are younger like me.. because i get them.. and .. they are FAR more mature then "normal" people their age.  

i play HUNDREDS of games on line... i buy alot of games for the computer... i read like a squirrel on meth.... i rock all the time.. because the other half of my body is still bored... i have an immense movie collection .. and like to watch only according to date last watched... when i was younger.. i ran.... alot... my mother tried to keep my brain going.. so.. we had our own library... thousands upon thousands of books.. which kept me very very busy.. but .. like all things.. i became bored once i was done.

my parents became VERY angry.. here were all these things they had provided.. and i .. in my wisdom.. got through it all.. was done.. and was left asking them.. is there more?
my chidren .. ( 6 of them) keep me busy.. but.. they are getting older.. and far more independant.. and they go to bed early. and i am done with my homework by at least 7.. so.. i get really bored... house always clean... zane doesnt want me to interact with him alot.. i think i overstimulate him.. and he likes to do things on his own terms.. so.. i feel a bit left out about that..

hm... things for your son to keep him busy... what is YOUR schedule? are you able to take him to museums? planetariums? man those are so cool..!!! we have a planetarium here that i could live in.  

what are his talents/? does he like music? models? astrology? anthropology? science?

does he collect anything? what is precious to him?

sally.. . i was reading your post.. and oyu are right... we do like to socialize.. but.. not the type of socializing that normally goes on.. i still to this day dont understand the way people socialize.. man.. it really irritates me... i in no way wish to offend ANYONE here.. and you have to remember that i have aspergers.. im just older.  we dont know how to socialize the way others do.. we can socialize.. really.. we can.. but just  not the way others do.. when  i lived in NC.. i met with others with aspergers.. we socialized... .. got alot of strange looks when we went out.... people thought we were aliens.. but.. it was fun.. and the attitude we always take is.. we arent concerned.. we are better than you.. we think higher .. faster.. and much more intelligent than most normaliens... hey.. thats just aspergers.
when i was little... i used ot lay in bed at night.. and imagine my brain.. as a huge train company network.. my tracks didnt go through the tunnel.. they went above the tunnel.. my tracks were 4 fold.. not 2 fold..... i didnt use coal.. i used nitrous.. i had no conductor.. i had hundreds.

think of a person with aspergers this way.  and maybe it will be easier to understand their way of thinking...  

today.. i think of this still. but now there are stacks of computer geeks running around.. not silently knowing what each other is doing.. like the Borg.

i cant stop my brain.. the only time it slows.. is when i take a pill at night to force it to slow down.  its very irritating.. that i have to sleep.. this bothers me alot.. seems so useles... so wasteful when i could be doing other much more productive things.. but.. on the outside. i know i have to sleep.  while my mind is still  in tip top shape.. my body is faltering and really pissing me off.  i have to comprimise.  boy does that get to me.

i have to say this... please do  not take offense to it.. anyone... b ut... those with aspergers ARE smarter.. in many different areas.. that does not make us better.. that just makes us more in tune to certain things.. like... climate change.. or the power of gravity.. many of us aspergers just "feel" things differently.. our bodies are more out of touch with some things.. and more " in touch " with others.. i used to think that i was dropped off from another planet.. and stuck here.. someday they will pick me back up. LOL  

anyway.. take care you guys..

[Mozartcowgirl]

I would also like to say... that we also think of the things that "normal" people dont.. like.. opening a gum wrapper... and saying. hey.. did you know that aluminum is actually bad for you ?  and so and and so on and so on.. when i was in college... my professor thought it was the neatest things that i did a paper on the incidence of female urinary tract infections and how it relates to men.. ( in a nutshell.. men have penises.... they urinate... some sit down.. penis touches rim.. are they at work? where are they? at home? who cares.. penis touching rim of bowl.. contact with bacteria made....go home to wife... get frisky... enter vagina with bacteria from rim of bowl.. scrape ureter with bacteria.. hence.. whammo.. honey..  i think i have a bladder infection. )  men do number 2 when they have to... common knowledge.. do they always keep their members from touching bowl rim?? hmmmm... dont  think so.

anyway.. i think those with aspergers just feel certain things deeper.. we  see into things more.. and though it can very irritating to many.. to us.. its knowledge that everyone should already know.  

just wanted to add that.

[MJIthewriter]

I like your posts here.  Sorry I've been neglecting this forum lately. I agree with the comments about socializing on the net. I read that 50% of communication is nonverbal.

If you're not in tune with nonverbal communication, that means you're missing 50% of the conversation. On the internet we don't have all the nonverbal stuff... So everyone functions with the 50% handicap. It levels the playing field.

Another thing... I have a hard time hearing people. I believe I have a central auditory processing problem. When people talk to me I have to put a degree of effort into hearing them depending on the background and whether or not they have an accent.  I'm sure people with accents are hard to understand for a lot of people, but add that to someone who hears background noise on the same level, it can get annoying.

Usually I have to have people repeat what they say... The first time it goes over my head if I am focused on something.

----------------
Another thing. I don't understand this with myself, but I was reading on the DAN/Autism Research site about some autistic people not getting the same "reward" in their brain for communicating with people that non autistic peopel have.  That may be true to a degree with me...

Usually when people talk I feel like I'm being interrupted. These can be well meaning friends.  Just I feel annoyed... I push it aside if I can, because I don't like to hurt people's feelings..  I get the same feeling on the phone...

But chat on the internet, then I feel comfortable talking. In fact I enjoy the conversation. I guess it's not that I don't get reward communicating, it's how...  Another advantage is I get to read peoples words and, reread. I can edit my own posts before posting.  I cna plan out what I'm going to say. It takes me longer, but I believe the payoff is a deeper, more thought out response.

People seem to wonder where I get my insight from. I wonder it too... I think it's like Mozartcowgirl mentioned, when you feel deeper and reflect over your thoughts multiple times, it helps build a deeper understanding. Another thing is when I read other people's comments I tend to spot patterns.
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About school: I was mainstreamed in the public school system. Elementary school was hell (at recess especially) but it got better in in middle and high school.

One thing that helped was to get connected with autism advocates. I find Autism Network International a good one to look into.

[MJIthewriter]

I meant my post for more than Mozartcowgirl btw. Everyone, including lurkers feel free to read it.

[Mozartcowgirl]

of course you did.. because you already knew what you were going to say.  thats how i roll.  

ha! some asperger humor there for you.

[Mozartcowgirl]

i meant that last comment for MJ.. everyone else can read it though..LOL

[MJIthewriter]

I posted something but deleted it, realizing I had no business posting something that occured earlier.

I notice when I get upset with something, it seems like no matter what I do it _won't_ go away. I can talk to several people, but have little to no effect on my emotions.

Then it dawned on me that my story this last day or two is a lot like the times I used to get excited talking to someone about something... They'd have to go, but once I had the train started, I couldn't put on the breaks... So I would find another person to pick up where I left off...

When soemthing upsetting happens the emotion just repeats in my head...like as if it just happened...

It dawned on me, maybe this is another form of echolaia...  I wonder... Sally, what do you think?

[Mozartcowgirl]

im not sally.. but i have to say something about this...

i used to have a really hard time.. ok wait.. i still have a hard time letting anything go.  if i feel its wrong.. i stand firm.. long after others have "let it go"  

i can play things from 1984 that still feel the same emotionally to this day.  
i can remember night time..  1971....being held by my mother.. in our red volkswagon 4 door....being very hot very sick...my parents arguing over whether or not i was  as sick as my mother believed me to be... my father did not want to take me to the docter.. and my mother did.. i can remember looking into her eyes.. and seeing the fear on her face... i knew i was very sick.  she saved my life.

i have never forgiven my father.  i am still angry.

i need validation.  i better get it.. because i know i am right.. i need to hear that what emotion i am feeling is the exact emotion i am supposed to be feeling. that it is correct that i am feeling it.. and .. while others may let it go .. i cannot.. because i have not yet been given that ticket.. and..  because it has not gone to t=other peoples head so that they fully understand why i am feeling the way i am feeling.  i feel like when i try to talk to others. .. they really dont listen... they seem like they are.. but i can tell that they arent.. it drives me crazy with my children sometimes.. but that is par for the course... i suppose.. but when an adult does it.. i just end up looking at them like they are complete morons.  and .. well.. its not fair that I should have to dwell around people who cant get their **** together.  

i am the same way MJ.... i tend to constantly have others repeat things for me.. to the point of frustration.. i repeat myself.. alot.. i go through the same thing.. over and over and over and over.  i dont know why .. maybe i am attempting to leave a mark on my brain somewhere..  

im so sick of my instructor telling me.. sandra.. stop asking me that question... IT IS WHAT IT IS>.  my thinking is .. NO>.. its NOT.. there is far more to it.. and i am not going ot let it go.  sigh

[MJIthewriter]

I was digging up some burried treasure (an old vocational evaluation) and it was interesting to see what has stayed the same and what has changed since I was 18.

The COPES (Career Orientation and Placement Evaluation Survey) put me as investigative, independence and aesthetic,

The investigative part and the need to know "why" showed up... I had a good laugh because I mention that so many times... If I don't know _why_ then I'm left confused. If there is any thing that really upsets me, it's being confused.  I don't take confusion well at all...

If I can't find a reason, then my mind may make one up... And if my mind makes one up I'm still not happy because I know it's not THE thruth...  I guess part of coping with autism is to have to accept that "why" that my mind makes up to be enough for some things, just so I can move on to the next point...  I guess that's where most people "generalize"  Autistic people don't like generalizations, at least as a general rule I believe.

Another thing I found was this particular evaluation the Myer-Briggs (MBTI) identified me as an INTP. I find it interesting because OI took another either in jr. high or in highschool and came out as an INFP.  Presently in any test I've taken I come out as a moderatly strong INFP..

I'm not surprised though because I see and identify myself with both personality types. Both strengths and weaknesses tend to ring true with me. I think the autism and being out of touch with people's emotions likely pushes me more into a thinking type than a feeling type.

Without autism, I'd probably be an INFP, but with it likely makes me more INTP.  But that's just a guess...  I have a feeling that autism and being an IN type personality occur quite commonly. If you look at the personality profiles, a lot of it rings true with autism and the traits associated with autism but likely to a lesser degree.