Devastated - please help!

Post Reply New Topic

I have read the whole thread and I agree, but I think she needs to get professional counciling before these emotions effect her relationship with her son. She will find that AS kids do much of what they do, not out of selfishness, but out of things beyond his control. I was the same way with seeing the world from only my point of view, when I was younger, I could not understand anouthers point of view, but that did not last forever. I learned empathy as a young adult, and now I am taking care of my mom as she has a chronic severe illness, and I put my life, my dreams, my ambitions on hold to be her caretaker. She is well worth it after all she has done to help me.

Jojo

I'm afraid I will have to be blunt here again. The elephant in the room is your children's needs (both your son and your NT daughter). It's not all about you, when you have children you know that you will love them unconditionally, I'm afraid you don't get a medal for just doing that.

Just read another poster's experience describing looking after her three sons with autism. Remember she has three children on the spectrum, you have one.

**I have worked really hard over the years to overcome the social deficits that would hold me back, and help/will help my sons to do the same. I have also worked hard and will continue to work to address the sensory issues and anxiety that sometimes make my or my sons lives miserable. What remains after that are the unique ways that our brains work, which I wouldn't give up for anything. I like being passionate, driven and single-minded when it comes to my interests. I like ignoring pop culture, and not even noticing what "the Jones'" are up to, let alone trying to keep up with them. I like being introverted, and being content with a few good friendships, rather than many superficial, time consuming acquaintanceships. I like not being dependent on other people to entertain, console, educate or inspire me, which it seems most NT's are..**

I hope you can be inspired to do the same.

Goodolddays,

You do need to take time for your daughter and you do need to teach your son that everything can not go his way but you are obviously emotionally troubled by your son and you do not have a good working knowledge of the Autistic mind and dont seem to want to learn.
You really need a wake up call. I have five children. I was married to a man who had undiagnosed Bi Polar disorder and abusive. I had three children with him because I was undiagnosed Aspergers and was not taught to take care of myself, I had to learn the hard way, by being beat up and treated like crap. Not any way to learn, I now have serious anxiety and social issues. My first son had early onset Bi Polar disorder, you think your son is difficult because he has some meltdowns? My son would cut the cords off of anything electric, set the house on fire several times, dig holes in the walls, flood the neighbors yard.....I could go on and on. Then I had this beautiful little NT daughter who would never touch anything and was always "good". Then I had my Aspie daughter, quirky, adorable, and what appeared to me at the time, very selfish. All three of my first children are a mess because I did not understand them. We did not know that I had Asperger's until my youngest was diagnosed. My daughter was not diagnosed until she was 16 and my son not DX until he was 12. My NT daughter had to always be the "good" one because its what she was and its what we expected her to be....I leaned on her, and she helped. She took care of her sister and was a target for her angry brother who wanted to be the good one but could never do it because we didnt understand him and didnt know how to deal with him.
My son is now 24, he has hepatitis C from IV drug use, he has few teeth and has been in Jail and prison off and on since he was 16. He is finally clean and doing well, on the right medication and getting the right treatment....also his hep C is under control. I know how different he would be if I knew then what I know now. My 21 year old NT daughter is still very responsible but rarely speaks to her brother and definitely not her sister ( wont go into that story). She is also in a bad relationship with a drug addict, this was my little ray of sunshine and it hurts me to see her with this guy! My 19 year old Aspie is now also diagnosed as Bi Polar as well but her symptoms to me seem more Paranoid schitzophrenia. She thinks that people are out to get her, rape her, she would scream saying she saw someone standing outside her window and would refuse to leave the house. She now lives with a boyfriend who has schitzophrenia and they live with his family and she seems very happy, they are both happy hermits playing video games all day but obviously they can not live their lives that way forever. Also my daughter still has severe anxiety attacks that someone is coming to get her and refuses to take any medication to help. Anyway, I didnt mean to get so into this . Long story short, I remarried.....I have two younger kids. I have a 6 year old daughter with classic Autism and a son with Asperger's who will be 9 on Friday. I have learned so much from having them.....it breaks my heart that I did not know all these things with my first three. All these strategies and ideas to help them and deal with them. The same techniques would have worked for my oldest (his psychologist thinks he also may have Autism also mixed with Bi polar) and certainly with my aspie daughter. Just being able to understand why they do the things they do. I know one would think that I would just naturally know that but I did not recognize these things in myself, they had to be pointed out to me. So not only did I learn about my kids, I learned about myself.
Im not saying that your son and daughter are going to have as many problems as mine do, I hope not, but you do need to seek out some help and educate yourself about your son. His mind works differently than your daughters and yours. Just learn to understand. He is not being selfish under the dictionaries definition.....its just self preservation. He can learn some empathy and he can learn to control himself and wait his turn, ect. Like I said in my last post, Autistic kids can learn too. However you need to learn to understand him and give your daughter some of your time as well. If you are two parents you can work on this together. Take time alone with both your kids, share your time. Dont give one more time because they happen to have more issues than the other. It may be difficult and yes your son may have meltdowns but he will soon learn to control himself better, if you teach him to do so. He is only 6, if you learn how his mind works and why he reacts the way he does then you can help all of you. Do this as a family.
I used to take my son to a social group a bit over a year ago before we moved to France and there was a Mother who's son had Asperger's and was in the group with my son. We would sit in another room and watch them on a TV monitor. She had two daughters who she had to tell us were so perfect....and then that horrible son who was such a JERK. She would sit there constantly and in front of her daughters going on and on about what a jerk her son was and "look at him, hes being such a jerk"......"I keep telling the doctors he needs more medication".....I wanted to throw my shoe at her head. I had to sit there and listen to that every time. I finally told the therapists and they agreed that she had issues and they could not get through to her either. Some people dont want to do the work involved in helping their kids, they want medicine or some quick fix, especially when they may have another child who is easier. Its the old...."why cant you be more like your sister/brother" type of thing. Your son is different and you say you love him so do the work....learn, educate yourself. Get a therapist to help you, read, whatever works best for you. When I say "different" I dont mean worse....I just mean different. If you son is having emotional problems it make be more environmental than his Aspergers. I know my severe anxiety is more the fault of being emotionally and physically abused by other kids, teachers and my X husband. Maybe your son is being bullied at school which makes his emotional state different. Also you may think that your son does not know that you think differently of him than you do his sister....you're wrong. I always knew my brothers were "better" than me and my Mom will tell you that she treated us all the same, I just knew....I was the problem and I never wanted to be. Im sure your son does not want to be the problem either.

And hows your 'realistic' REAL LIFE approach working out for you currently?

The 'not realistic' approach is what I use..not because I read it somewhere but because its a way that works, and it keeps his and our stress low.

Not trying to be rude but your posts are showing in nearly every sentence your total lack of comprehension of ASD. Either its that or a refusal to accept what you read is correct or applies to your son (which I can accept is a valid view point).

I have a bit to say here and I will probably blather on quite a bit when I make my way to the end of the thread. I just wanted to comment on this.

AS children as teens are a lot more mature than their peers. I think this, at least, you can see the benefit in as based on your comments. Without the social problems at that age, it's almost guaranteed that your child will never, ever have that vacant, superficial "whateevaah" look. Hell, when I rebelled in my teens it was by changing my interest to Philosophy and away from Music... the eloquence, the intelligence, that is as much a part of AS as is the social and sensory issues.

The diagnosis is hard to deal with when you see it in black and white, but I think that you will find just as many ways to be proud of your child as you would if they had different 'NT' strengths.

goodolddays: I will be writing out a reply, but it will be lengthy, and I probably will not be getting it up until later tonight. I have a busy day of court appearances, a birthday party and other kid stuffs.

Wow there were some underlying issues in this thread. All right, I made it to the end. And... wow.

"We also found that the idea that "tantrums should always be PREVENTED" and that "the child should immediately be removed from the situation when a tantrum seems to be approaching" - is simply not compatible with REAL LIFE"

You don't have to do things 'his way' all the time. You do, however, have to understand the difference between his needs and his wants. If he's having meltdowns (read: Meltdowns, not tantrums) then you will have to identify what needs aren't being fulfilled. If he is acting selfish, then it is because he feels that he needs to be in order to survive. Just because a child has AS, it does not make them selfish. Quite the opposite, in REAL LIFE.

(though I've noticed that AS kids often seem very selfish to NTs. From what I've seen I usually find that they are missing contextual clues as to why the AS child is acting that way - NTs not seeing things as important that the child, and I, think are monumental)

I was a low maintenance kid. Lower, even, than an NT child. Exactly because I didn't have the same need for socialization and support that other kids did. Literally, the only thing I needed was a calm, structured space away from other people and clear, explicit instructions. So long as I had that, I could survive and grow. Take that away and I was hell on wheels...

I, literally, raised myself. I had no diagnosis, my family ignored or shunned me, my parents were busy dealing with their own issues and gave me only a minimal amount of attention/support once I entered school. I lucked out and found a very supportive friend in Jr. High who showed me very basic social rules and steered me in the right direction... so I ended up getting a college degree, making out with a spotless and bright career in the military, and now I have a very supportive SO (who I've known for twelve years and has had an amazing career of her own) and am doing my best to help with the beautiful children in my life. Childhood was a living, friendless nightmare for me - but I made it just fine without 'bothering' anyone over much.

My SO has two kids around the same age as yours that I've recently gotten to know. One has AS and one has ADHD. The AS child is the easy one. Quiet, behaved, predictable - so long as his needs are met. They are both wonderful kids, but the non-AS child is the high maintenance one. Not the other way around.

This leads me to think that, either the problems you are dealing with are caused by some condition that runs in concurrence with the AS, or you yourself could very much benefit from finding better strategies to deal with it.

I had a multi tantrum daily Aspie before - I now have a 9yo that can recognise when she's feeling overwhelmed and has strategies to cope. It didn't happen overnight. It did make going out a huge challenge when she was small. Yes, it can be inconvenient... but I didn't have my child for 'convenience'. I learned what her tantrums were about and why she was having them, helped her learn to control them and how we, as parents, could help her avoid the emotional trauma of having them. Each and every tantrum helps to further erode a child's self esteem. He does not know HOW to control them - he needs your help. And the only way he can get that is if you teach him.

Yes, ASD means you need to learn too. There is no magic pill. You have a child who is struggling because he obviously still has not been taught about his own emotions - what they are, why they happen, what they feel like and how to handle them. If he's having tantrums he very obviously has ALOT of emotion - and no idea what to do with them. Do you know if he has sensory issues as well. Very important to know if they are contributing to his episodes because they can be helped, worked with and possibly even acclimated to depending on what is going on with him. He needs to be taught what other kids learn intuitively. And you need to learn how to play detective. If you can identify the causes of his tantrums, you can work towards stopping them. I guarantee you that 'not getting what he wants' is just the symptom - not the cause.

I do agree with others - the picture you seem to have of Asperger's is very - negative. Unnecessarily so. Whomever gave you all of these negative impressions and superficial ideas about what autism is and isn't is, quite frankly, out of their mind. The girl in the video was diagnosed with autism, not Asperger's. She was not verbal as a child. She had extensive intervention and yes, there are some kids who can achieve quite a bit. Just because she 'looks and sounds normal' does not change the fact that her mind will always function differently. She will always think differently. And she will always need to work with her sensory issues. In the official diagnosis for Asperger's it clearly states that children with the disorder are of normal to high intelligence. Whomever gave you the impression that Asperger's equates to mental retardation should perhaps be checked for that themselves.

Chances are you have a very intelligent young man on your hands who needs to learn about emotional regulation. I can only encourage you, again, to reach out to your local school district and get him whatever interventive services they can provide. You are clearly overwhelmed and need assistance. An internet forum can only support you so much. Please reach out locally. I get the distinct feeling you may be suffering from some sort of 'stigma' of having a mentally challenged child. Quite honestly, in this day and age, you need to look past that. Asperger's isn't a 'death of all hope' sentence imposed on your family.

I realize that you are venting and reaching out but everyone here will be quick to point out - just think how it feels to be your son. You may think you do not act out in a negative manner towards your son but trust me - he is most likely alot more sensitive than you give him credit for. Just because he has trouble expressing himself 'correctly' does not mean he doesn't feel, think and react to what goes on around him. As an Aspie he will be quick to blame himself for all of the family's problems and if his family is actually feeling that way, it will be even worse. (Seeing a pattern here?)

It disturbed me quite a bit that you discounted his shows of affection as self gratifying behavior... as if he isn't even capable of feeling affection for his own mother. This is SO FAR from the truth that it hurt just to read those words. I think it may be safe to say that most of what you think you know about Asperger's is total rubbish that needs to be thrown away fast before it stinks up the place! Go to your local library and get any book by Tony Attwood and read it. Click on the link below and read the free online book written by fellow WP member Tracker - and take his words to heart. He WAS your son. He knows much of what your son is experiencing and can give you the inside information both you and he desperately need. There is a sticky thread in the Parents Forum here with recommended reading for both you and your son. Please please please use it.

Asperger's is NOT what you seem to think it is!


Congratulations! Your Child is Strange! by Tracker - CLICK!

Well, I live in Panama City, Panama, Central America. Medicine is not that expensive here. Actually my sister lives in the US and she comes HERE for medical assistance when she has the chance (not emergency), because we have good medical service at reasonable a price. It is expensive. As I told you before we spend more on therapy than in household. Actually we spend more on therapy that in her education (school, transportation, etc.). But it is totally worth it. When we started, she had been kicked out of one school (the school sent us a letter to let us know they will not allow her for the next school year), and we were forced to pay for a helper inside the classroom (just for her) in the new school. That was the school's requirement to accept her. After that school we even moved her to a school for children with special educational needs, because we were running out of options. Six months after she started therapy we were able to get her back to a regular school. A little school, just a few students per classroom, but a regular school. This school year she is attending a regular school, regular classroom with about 30 students, and she is doing great. She does not stim anymore, she does not have sleeping problems anymore (without meds), she does not have problems with stress anymore (without meds), she is less confrontational now, she is starting to control her temper by herself (a couple of days ago I saw her calm herself down for the first time in 11 years), she works at school, she is writing way better, she is making some friends (she still feels awkward and it is still difficult for her, but she is getting better), she rarely have meltdowns anymore (specially NOT at school), she is even starting to take responsibility for her school work (she used to think it was my job to take care of it for her).

I do not what the therapy consist of, concretely. For me, it is like magic. The therapy is just our daughter and the therapist. We are not allowed (because if we are there present she will not behave in the same way she does when we are not around). All I know is the therapist gives our kid tools to do the things she needs to do. They also talk, when needed, but it is not just talking. The therapist also gives us advise on what to do at home, and school, when needed. Before our daughter started this school year, she had a meeting with all her new teachers and gave them strategies to work inside the classroom, in case they needed them (some teachers give her extra time if she does not finish the tests on time, because writing is still a little difficult for her).

Right not we are working together in making our kid more independent, and we are working on that in therapy and at home. The therapist gave us a list of things we need to do at home so she can start being more independent. It is a great help and we are extremely grateful to her.

I have to admit that reading your posts Goodoldays, have disturbed me. But I am a compassionate person, and I am trying to relate to what you are going through. I agree with some of the others that you do need to find a counselor for yourself. Even if it is just for a few sessions that you can let this all out and start to come to terms with your feelings.

Now that you know your son has AS, it is not fair to keep comparing him to your "perfect" daughter. I think you should count your blessings that you have her, but not to constantly be comparing him to her. Your son has a disability. Maybe you don't view it as one because he doesn't look different or have any physical disabilities. Once you educate yourself on what AS is, I think you will understand more. Your son is not an evil child. One of the hallmarks of AS is that they have lack of theory of mind which means that they have a hard time understanding that other people have thoughts different from their own. They have trouble with emotional regulation, they have understanding that others don't automatically know what they are thinking.

You are absolutely right that you should not give in to his every whim to prevent meltdowns. One of the most valuable things you will be able to teach him is flexibility. This is something that does not come naturally to him. But, you have really start to learn how his mind works instead of just comparing him to normal children and being disappointed because he constanly falls short.. Your son does not deserve that.

I can tell that you love your son, but you really need to seek help in accepting his diagnosis. My son is an only child, and I had desperately wanted another child, but was unable to have anymore due to my age. But, my son does require a lot of extra work, so maybe God knew best for us. I truly believe that he could have benefited from a sibling though. A sibling is an excellent way for AS children to learn how to interact with their peers. Your daughter will be fine as long as you do make time for her along the way. When she gets older, she will be able to understand better that her brother is different. And in time, he will mature and learn to handle things better as well.

My advice would be to try to find a behavioral specialist that specializes in AS to start to help you understand why your son has the meltdowns. And continue to read, read, read as much as you can. You are exhausted. You did not know what was going on for 6 yrs, but now you do, so now you are on another journey, and I pray that things will only get better for you and your family with the right help.

If you read all my post you will see I said sometimes I also wish an NT daughter. Yours is only 6. Mine is 11. I have a little more time in this track. I know how difficult it can be. And I am not a stay-in mother. I work from 8-5 and am a mother from 4:30 am to 9:30 pm, and sometimes after hours when she wakes up scared because of something she watched on TV, in the movies, or heard about from someone at school. But what I saying is that it could be worst. You need to embrace the fact that you have a kid with AS and make the best of it. AS wont kill him. He is just a little different an needs some help to fit into our NT world. Which I do not know how fair is after all, because he is not wrong, we just need him to be different because this is an NT society and he needs to adapt in order to survive. I do not think that's fair, but who said the world is fair.



My husband never wanted the have kids. He did not know he had AS by then, but he knew he had a lot of problems growing up, and he was sure if we had a kid our kid was going to face the same problems. Turns out, as always, he was right. We did not have a second child because I did not want to. Because I noticed how difficult it was raising the first one and I knew I was not going to be able to do that again. But if you think about it you do not have children to fulfill your selfish expectations. It just does not work like that. Actually I wanted a boy. And had a girl. I never even dreamed about having a girl. But things are the way they are, not the way you want them to be.



I do not think you are monstrous for thinking you may end up loving your girl more than your son. I think it is only natural. It is a natural inclination. She is easier, she is harder. Who in the world would love pain? I have also found myself thinking "if just my daughter was more like... (fill in the blank with the name of ANY of my nephews)" But then I think "No." She is more intelligent, has a better heart, has that incredible drive, has more quality in every little inch of her self, than them. Not always the easy path is the best. Actually if you read history you will find the best things get out of hard work. We love easy, but easy is not always the best. If you are religious, you should know that God only tests those who can stand the test and walk out becoming better people.



Yes, he is selfish and self-driven. He has AS. And that can be changed. But he needs help to get there. And he needs your help. If you still care at least a little about your boy, you need to start reading about AS and trying to understand what having AS means. Just let me remind you he did not choose to be like that. You had him, so it is part you responsibility that he is the way he is. And you being his mother, it is your responsibility to help him. So you do not like the way he is? Well, then start helping him to change, and not by trying to force him. Believe me, I tried that way and nothing good comes out of it.



That is not true. And it is very sad that you think that way. He loves you. He loves you very much. He loves you more than anybody will ever love you. The love of an Aspie is unconditional. I know sometimes it does not seem that way, but it is. You should stick around and read the posts so you understand. You cannot believe all you read in books, because the people writing those books are NTs, no Aspies. I love the phrase from "The Little Prince": "It is only with the heart that one can see rightly; what is essential is invisible to the eye."



You have two gifts. Two different kids, apparently both wonderful in their own ways. Yes, one is more difficult than the other, but nothing good is for free. The best things in live are those who cost the most. Well, you have to pay. Your daughter does not have AS also? Lucky you! I know people with 4 kids, all in the spectrum. Instead of complaining for having a kid with AS, you should be grateful you have one NT kid and one AS kid. With love and help, he will become a wonderful human being. Sure you would like to be there when that happens.

This is something that one of my friends told me : She said "I am sure God chose you to be his mother for a reason." It takes a special person to be able to raise a child on the spectrum. Yes, we are all human, and none of us are perfect. I know that sometimes I wish things were easier for me and my son, but if someone gave me the chance to trade him for another, NO WAY! Yes, I hope that he will be able to function in society one day, but if he needs my help, I will be there for him until the day I die!

I am struggling not to react, but I hear my own mother in a lot of the post below.

My mother's version of this was something like "Just wait until YOU are a parent, then you will see how hard it is." Now I am a parent. I see - because now I have to handle it, too. I realized that putting the responsibility on my son - the way she had on me -wouldn't fly with my family. I didn't know what was happening, but I said to myself well, if I did this to him, then I will un-do it. I stumbled through parenting, making mistakes, but always searching for answers. It's very hard to be aware you are doing it wrong and are helpless to change it; it makes you want to find someone to blame. I refused: I am the parent - he is the child. I am the one with the resources. He has nothing but us.

I am no saint. I regret to say that I have often "acted wrong" towards my son; I thought parents set the rules and children follow them - and that if a child doesn't follow the rules, he isn't being held accountable. More than likely, this philosophy provided him a bad example that set the stage for his more difficult behaviors. Aspie kids are particularly resistant to "Do as I say, not as I do."

We now have an ironclad rule in our house: if we parents mess up, we go to my son, own up to it, and apologize. I don't care if I'm tired. I don't care if I'm frustrated...I signed up for this when I chose to be a parent.

I'm posting from my phone so I can't write all I otherwise would, nor as well, but I will start by noting I have a very social and non-obvious Aspie, but I wouldn't trade that label for the world, it has been THAT useful getting me an ear from the schools when I need it. Not true everywhere for everyone, of course, but that is how it has played out for us. AS isn't a pathology, it is a different way of being, and the label can be a key to understanding.

Last edited by DW_a_mom on 05 Jul 2011, 9:11 pm, edited 1 time in total.

I'm gonna have to chime in on this too. This a very hurtful thing you are saying about your son. What do you think he would say if he found out you were saying these things about him here?

Sounds like you are reading a lot of "Autistics don't have emotions" crapola. Get this idea out of your head now, it will only cause hurt.

You may be getting overwhelmed with all the info you are reading about ASD's, keep in mind that it may be time to start filtering the info. Consider the sources...there is a TON of garbage out there (especially online!) about ASD's. What exactly is it you've been reading?

My son comes to greet me at the door nearly every day when I come home from work and he is a lot more severely affected than your son (he does not yet speak communicatively) and and there is no way in hell I'd ever think he was doing this for some sort of sensory high.

In case it hasn't been mentioned yet, THE book for you to read will be "Congratulations, Your Child is Strange" written by a member here who has AS and is busy trying to build his life as an independent adult. You will find this book free for download at ASDStuff.com

This isn't the time to debate cultural differences or parenting philosophies. Raising an AS child to a happy, healthy self-sufficient adult requires, REQUIRES, that you understand and adapt to your child's unique needs. That book will get you started.