This sounds a bit like how it was before my son was tentatively diagnosed. He knew he wasn't performing to the level he felt he could (he was well aware of how smart he was in many respects), and the disconnect, plus the social issues, was forcing him inwards. I was actually stunned when the school principle told me she thought she knew what it was; I had to press for the name. Like many people, I had assumed those on the spectrum didn't feel emotions, and I have a highly emotional son.
A lot of the behavior issues you describe can result from the frustration of not being understood. You daughter may be bored at school, as well. If my son had been held back from learning to deal with his social immaturity he would have FREAKED. Some school skills he was behind on, quite a bit, but others he needs to race ahead with.
For him, the disconnect between ability to function and what goes on in his head is a major source of frustration. He wants to write long novels, but the physical act of writing is literaly painful for him. He wants to read complicated books but he can't sort out big words on paper yet. And so on.
I suggest working with your daughter on the assumption that she does have Aspergers and see how that plays out for you. Read, read, and read! Run imaginary stories with your daughter to see if you can find clues into what she is thinking and feeling that she may not be able to tell you directly. Work on monitoring her sensory stimulation, but work to keep her mind moving with things that interest her.
Try to sort out when she resists because she is being stubborn (like all kids can be) v. when she resists because there is a real roadblock. When it's the later, she will have to do it on her own time. Pushing just makes everything worse. When it's the former, rewards can be used as motivation.
If she will accept your presence in the classroom, spend some days seeing what goes on and how your daughter handles it. If she can't (my son would just run to me), you will have to find more subtle ways. I used to help out with parties, sort papers that were to be sent home, and so on, so that I could see what my son was doing. I also used to spy on recess, so I could see if he was being teased or if other issues were occuring.
If the school hasn't dealt much with Aspergers, they probably don't know how to deal with a child like your daughter. Don't assume they know. Do the homework yourself and check in with the teacher regularly. Just picking your child up everyday at the classroom door gives you huge opportunities to know what is going on.
My son gets pull outs from regular class for help with writing, reading, and spelling. He gets occupational therapy to work on muscle tone in his hands and upper body. He goes to a weekly lunch bunch to work on social skills. He sees a counselor every two weeks or so to discuss things that are upsetting him. He's graduated from speech, but he spent a year working on what is known as pragmatic speech, learning to effectively and succintly say what you mean, since listeners rarely have the patience for a round-about speech. None of these were available through the school until he was officially qualified for special education.
An older child at our school who is also Asperger's shared an aid for 1st through 3rd grade with a high functioning austic child. She had a lot of experience with spectrum disorders and could remove him from the classroom when the stimulation was too much, knew how to help him cross the barriers on reading, etc. After 3rd grade the child "graduated" as he became able to accomplish these things on his own.
Children with "light" Aspergers, I believe, can't really be diagnosed until they start elementary school. So many of the indicators can be normal in pre-school age children. There were issues with my child all along, but it wasn't until K and 1st grade that I KNEW something was going on. It was breaking my heart seeing my bright and sociable child struggle with so much. Getting the tentative diagnosis was a difficult term to take, but it answered so many questions. My son now accepts himself as he is. He doesn't expect to be like the other kids, and his teachers don't expect him to be. Just taking the burden of expectations off makes so much difference. Plus, he knows that many great inventors had Asperger's, too. Before he got the tentative diagnosis, he had decided he wanted to be an inventor. So, knowing about people like Bill Gates, it's a real inspiration for him.
Best of luck to you and your daughter in finding the keys.
My son didn't mind the diagnosis process at all. Now, it may have seemed less alien since it was done by the school, but I also think it helped that he fully understood what was going on. My son knew full well that he was "different" and that he was having difficulties he didn't expect to, and we told him that all this was to help us figure out how he thinks, and to help us figure out what he needs, so that he won't have to be so frustrated any more. He WANTED an answer to his problems, and so he became a willing participant in the process.
My NT daughter is more of a perfectionist than my son is, but I can see how it would be a very difficult combination, to have a child be Asperger's AND a perfectionist. As I think more about it, I do think the two are often connected ... my husband, for example. He won't do anything unless he thinks he can do it "right."
It seems that most Aspies develop very intense interests. It doesn't really matter what the interest is, it's the intensity that is hallmark. So, your daughter not wanting interruptions during movies, and remembering lines, could be an indication of Aspergers.
My son has had difficulties with friendships. Basically, he locks into an idea and can't let go of it. Other kids like to free associate more; he wants to stick with what they've started (unless he gets frustrated). Him and I have talked a lot over the years about learning to "bend." We've also talked about taking turns choosing play; that he can't expect everyone to always buy into his vision. It isn't that he is bossy, although it can seem that way, it's that he always has something in mind and he can't let go of that idea. My answer to that has been to arrange most of his playdates at our house. I can usually intervene before the kids get too frustrated with each other. Or, if nothing else, I can see where the conflicts come from and discuss it with my son later. Some of his friends we limit to outtings with a set plan, so that the two don't have to negotiate play. We're all just going where I say we're going, and my son has already bought into the plan.
It isn't so much that he wants to control things and choose everything, as it is that he needs things to go as he expects them to. He looks ahead for everything that is going to happen in his day and makes assumptions about what the experience will be like. If it varies, he gets upset. I believe this is a very common Aspie trait, the need for things to be as expected, as well as the need to form a vision of what to expect in advance. By giving my son very complete and honest information up front, including all the variables, we can help him cope with almost anything. He's a true hero at times, really. As long as no surprises have been sprung on him. And, even then, if we can talk through it well enough.
My son is different from your daughter in speech patterns, but what I see in common is the apparent inconsistency: a child very good at some things, and very weak in others. I think that is a common Aspie trait, as well. What isn't universal is what the strengths and weaknesses are going to be.
Anyway, good luck getting it all straightened out. Talk to her. She is probably far more in tune with her situation than most adults would give her credit for.
Berit, I think you should rely on your parental instincts. Personally, I believe that the best way to deal with Louise's concerns is to remain as open with your daughter as possible. My son may not have understood exactly what a psychiatrist was, but that was OK: he knew this was a person who was going to talk to him for quite a while, ask a lot of questions, and try to see if he could figure out how my son thinks. Not that anyone can ever really KNOW how someone else thinks, but some people are trained to try. My son could grasp all of that. At age 7.
My son, like your daughter, is very young in some ways, and very grown up in others. I've learned not to ever assume that there is something he cannot grasp. We talk about everything. If it becomes apparent a concept is beyong him, I just hug him, tell him it's OK, not to worry about it, he'll figure out what I was talking about when he's ready.
I know that everyone has different experiences with special education and the evaluation process, and we are probably unusually fortunate, but my son has seen nothing but positives come out of his tentative diagnosis. He is so much happier now that he "knows," and now that the adults around him "know." He does not see Aspergers as a negative, and he never explains it to anyone else as a negative. He knows it is what makes him different, but he also knows it is his gift, and the reason he can think such amazing things.
As he gets older and kids around him change, maybe he will view all this differently. But, I hope not. We are in a district known for it's excellent special education and acceptance of diversity. He can choose places like that his whole life, as far as I can tell, and write off those who can't accept him as the exceptions. I will prepare him for that, when the time comes for him to understand the broader world isn't always like our lovely little pocket.
He recently got put on a soccer team that was completely wrong for him. I had a few pretty bad days worrying about how that happened and if my trust in the other adults around me had been missplaced, actually. But, my son trusts that we will fix it. He accepts that we might not, but he trusts that we will. And, it turns out, my worries were wrong and it was a mistake, so it probably will get fixed. This is my son's experience in life; people give him what he needs. I know, there are teens here who think that I shouldn't be keeping my child from the wolves, because it isn't realistic, but how can a mom NOT protect her child? He needs this, now, while his wings grow. And they ARE growing, in his own space and his own time. He is, at age 9, starting to acquire a lot of independence and responsibility ... I am so proud of him!
Lol, sorry, I digress ...
I found the diagnosis to be a good thing. I am sorry that Louise had a bad experience. But, as I said, I think that her concerns can be dealt with.
One thing I do recommend, is asking upfront what all the downsides are to the process and having notations in his file. I found the professionals I was working with to be pretty blunt about it, but the clincher was discovering that parents in my district are trying to get perfectly normal kids classed as special ed so they get more time on tests, which gives them an edge in getting better test results. I thought that was way too funny. BUT, the long term point is, the entire discussion gave me very good insight into how my son would be viewed in this district, and what the long term pro's and con's might be. Getting something put in someone's permanent file always takes a lot of thought.
I have found I am actually choosing, mostly by inaction, not to formalize the diagnosis, however. I don't seem to need a doctor's opinion to get my child services in this district, and I guess I feel like I have more flexibility for the future by not having that finality in my son's records. That's why you'll see me often use the word "tentative" when I refer to my son's diagnosis. We only have the evaluations made by the school.
Personally, I found the evaluation process educational by itself. Stressful, yes, but very insightful.
OK, got to get back to work. Hope something in here was helpful!
I have been hurt 1000 times more by my mother's 'parental instincts' trying to do me good than by the collective attempts of many people to hurt me. 'Parental Insincts' don't actually exist, you are just guessing around. The more able your child is to understand, and process situations and articulate what they want, the more informed your guess is.
I have to admit it is true that not all parents have good instincts. And when they act poorly on bad assumptions, a lot of harm can come. I wish I knew more about your parents, but I don't, so it's difficult for me to understand exactly what mistakes got made and how.
But I believe in Berit. I'm encouraged by the insights she has posted, her willingness to explore, and her intent to be open with her daughter. I wouldn't tell her "rely on your instincts" unless I was getting a sense that she was actually in tune with her child.
No one can ever really know, of course. And all parents make mistakes. Dozens of mistakes daily, actually. But we can't let the fear of those mistakes keep us from inaction. If we do, we aren't doing our job.
You can only ask us to do our best. Our INFORMED best, of course, to the practical extent we can become informed.
Taking action helped my child. Your parents taking action did not help you. Berit is listening, gathering information, and will make an informed choice. That, hopefully, will be the right one for her child. None of us can know for sure, of course. But I DO know that all this discussion here is an important part of the process.
Berit, it is quite common for adults without knowledge on Aspergers to assume it's all behavior problems. And, actually, to some degree the visible behavior issues can be mitigated with strict certain discipline techniques. But, the larger goal, of helping your child find her way in this world and be happy, that takes more. People like my father had miserable childhoods. Sure, he grew up into a successful adult, but he was still basically unhappy, and transferred a lot of issues onto his family. To me, that is what dealing with the behavior but not the cause gets you. Someone who can function but is miserable. You and I want more for our children, don't we? If we can succeed, I have no idea. But, darn, I'm going to try!
I am happy to talk with you more, berit, maybe in email or PM, but I stopped using any IM or chat a long time ago. It's bad enough that I'm addicted to forums! I found letting the other stuff into my life was far too disruptive for me. I'm not very organized or scheduled to begin with, and that stuff made it worse.
I'll send you an email addy as a PM.
Debbie
Louise18, I don't think anyone has ignored you. You information is very useful and I haven't forgotten it. I have, even though it wasn't originally addressed to me, given it a lot of thought for if I made the right choice and for use in guiding future choices.
What you aren't seeing is the gray. I know you can't, you actually sound like my son, once he's stated his case and come to realize he isn't winning me over 100%, he just works harder at it. But all the information does find a place, and there is use to having been a 5% or 10% influence (not that I am saying your percent is that low, it's just an example), even when you hope for more.
I can't come on everyday, either. Our family just returned from 3 days out of town, and now I have a huge work deadline coming up. Most of my limited free time in the next month should be with my son, don't you think?
I can think of at least 50 people who know me and what is good for me better than my mother does. For any progress to be made in society NT parents are going to have to start accepting that, particularly in the case of aspies, parents do not always know best. THAT IS NOT A PERSONAL ATTACK ON YOU, THAT IS JUST A GENERAL FACT.
I am sorry that this is true between you and your mother, but it is not true between all mothers and children. No one knows my son better than my husband and I (and I'll give my husband the edge there).
I wonder, though, how different it might be with a daughter. My 5 year old NT daughter and I are already butting heads over so many things. There is a whole different dynamic between mothers/daughters and mothers/sons. I have less confidence that I know what is going on inside her head ... but, then, she is also the consumate actress, affecting whatever she thinks will get her the results she wants. Or, at least, that is how she seems to me ... I love her dearly, and I'm sure she will be just fine, but her manipulating side really gets to me.
Right now, I confess, I am finding my 9 year old Aspie son far easier to parent than my 5 year old NT daughter.
I wonder how much of that comes from age, how much from gender, and how much from Aspie v. NT.
Louise, I know you are geniunely worried about how the evaluation process will affect Berit's daughter, but I can assure you that my son was not harmed by it. Whether you would choose Berit to be the one to make this choice for her daughter or not, she IS the one who has to make it. She has to decide if her daughter will react like my son - which was fine, or like you - which was not. Given the current school situation she has with her daughter, I wouldn't wait, either. If her daughter is going to have issues with the process, it won't be better in two years, not that I can see. All waiting accomplishes is the opportunity for the daughter to maybe be able to tell her mom, "no, I don't want to do this," assuming that was ever true. If the daughter is on board with the evaluation process, waiting will have cost 2 valuable years to frustration that never needed to exist. I find that a high price to pay for being extra sure your child is OK with it. Berit and I are NOT like your mom. My son was fully informed in the process, and in this discussion we have advised Berit to be the same. That alone is steps ahead from where you were when you were evaluated. Is it the right answer? I can't say. But neither can you. We can only trust that Berit will use the information we both gave wisely and without bias.
Don't stop sharing with us on this board. But do try to accept it when we don't choose to agree with you.
Since I have a year to convince you, maybe we should cool of a little on this topic and discuss strategies which you could implement in the meantime. It will get us away from you feeling harrassed, and maybe give me more information and give you more confidence in my opinions as we can find some common ground.
Is there any major problem we might be able to try and come up with solutions to?
I like this offer, even if it isn't really to me. I was thinking up a whole bunch of observations and comments on your longer post but, honestly, I'm not sure it would get us anywhere.
I know bias will come through when one talks to one's child, but I certainly try to keep from happening. I can't do more than try.
I hope you won't take this the wrong way, but I smile seeing how much your persistence reminds me of my son. When he's right, he's right, dang it, and I had better listen!
I don't have the same force of assuredness behind my opinion, as you have behind yours. Only time will tell if I've made the right choices with my son, I've said that all along. But I do believe I have. He is in so much of a better place, especially at school, than he would have been if we hadn't gone through the process. His feelings on it may change, and he may someday hate me for it ... shoot, once he's a teen it will be his duty to find SOMETHING to hate me for ... but I hope that when he is all done growing up we will both be able to look back and say I did more right than I did wrong.
I had the best mother in the world growing up. I didn't think so when I was in High School, but sometime during college I started to figure it out, and when I found out all that she knew about my missadventures but had had the grace to hold her tounge about, well, then I was sure.
Not everyone is so blessed. I have plenty of friends who still refuse to talk with their moms. Moms are human beings. No more, no less.
Berit, your house sounds like Hitler's Germany.
I think it is fairly obvious that the benefits versus disadvantages a psychological diagnosis of aspergers is something that the person themself is best place to make as no-one else has the self-knowledge to know themselves that well.
If you truly think you should just make all your child's decisions without them then I give up. You are a lost cause, and I truly truly pity your child. I think you have proved yourself to be either a) a pragmatist or b) totally uneducated about philosoph, which is even more of an argument why you shouldn't be allowed to make a decision on your child's behalf where philosophical considerations come into it.
I rather knew that the way Berit worded her post would get to you. But, when it comes to describing the job of a parent, she is basically right.
Don't assume that her saying it is her job to make decisions for her child means that she won't consider the feelings and concerns of her child, nor that she won't try to figure out how her child feels about it.
I consult my son all the time. How he feels has enormous influence on my decisions. But, yes, they remain MY decisions. I know quite a bit that he doesn't, and I am charged with the job of using that information to benefit him. It's my job, not his.
My kids know I have the final say. They know they have a voice, but they know that I'm in charge. That is the way it's supposed to be. If the kids were in control they'd eat themselves sick on junk, destroy the house, not do a shred of homework, and would never make it anywhere on time.
It does sound rather unpleasant from the other side, though, doesn't it?
But, seriously, and I know this because I'm a rather lax parent, kids are happier when mom is in charge. They really are.
Louise, I don't know if you'll see the point to this story but, hopefully, you will.
I have a dear friend who worked 15 years as a very exclusive nanny. She had a masters in child psychology, and was the perfect Mary Poppins in every job she took on.
I remember talking with her, before she had gotten married, about a mutual friend of ours with a young child. The mutual friend was having difficulty scheduling an outing we all wanted to do, because of issues with her child, and my nanny friend, of course, had all the answers.
We just smiled at her. We knew it would all be different when it was HER child. We tactfully did not tell her so.
Five years later the former perfect Mary Poppins gave birth to twins. And started calling me for advice about, well, everything. Seems that being mom instead of nanny changed everything.
We all, of course, see things from our own unique perspective. And that has much to do with where we've been in life, and where we have yet to go. I know it always sounds condenscending to be told that you can't understand something because you haven't been there yet, but I've come to accept there is quite a lot of truth to it.
Of course I wonder what decision my son would make if he had all my information. But I have a handicap there ... I don't have all HIS information, and try as I might I never can have it. If every decision that needs to be made must become an exercise in reading his mind, we'll never get anywhere. Among other things, I simply don't have that kind of time. My life is INSANE when it comes to time, and I mean INSANE. You have no idea; you can't have any idea, you've never lived in my shoes.
You have a lot of anger at your mom. I can't say if that will ever go away. Some parents do make all the wrong decisions for their child, and some parents are just lousy people. I don't know your mom, so I don't know if any of that applies. But I do know that I am not your mom, and so seeing my actions through glasses tainted by your view of her will, I feel, always be inaccurate.
No one here means to be condenscending towards you. Your opinion matters, or we wouldn't keep trying to explain ourselves.
Point taken. Just note that we parents (or is that we less-Aspies?) have a tendency to speak in generalities and digress from the issue at hand.
I guess I'm in a different position. We went through that part, interviewing with a psychologist, when I had no idea it was Aspergers. Plus, it was someone at the school my son knew and already trusted. I'm fortunate that I don't have to go beyond the school psychologist. But I really do believe that my son would be on board with it if I did have to. He could so clearly see he was different, and currently he really enjoys knowing there is a reason why. He also likes being in such great company, with famous scientists and inventors.
Age is definitely a factor. You were diagnosed at an extremely self-conscious age. I would recommend avoiding that space of years with this kind of thing. Which leaves it to earlier, or later.
I don't have many certain answers. But your determination and stick-to-the-facts nature remind me of my son. And my husband, just a bit, actually. I adore it. Sorry if that sounds wierd, but when you raise an Aspie child, you become endeared to these things. I'm not seeing you as a child, of course, don't confuse that. Berit is seeing the parallels, too, I think, which is why she posted as she did. It's tough to see where that's coming from, if you aren't in our shoes, I think, however, so I won't be surprised if you totally don't get what we thinnk is so sweet. Just accept it, OK?
Sorry you tought I was being patronising,Louise, cuz I was not. I was being truthful. Well I guess I donīt feel welcome here and am going to leave this forum. There has only been one single person who has treated me nicely,And thatīs DW. Others have just been on my case all the time mocking me, calling me Hitler and all kinds of bad stuff and I donīt need that. So sorry to bother you with my existance and have a nice life.
Yeah, my post was incredibly mocking. I can totally see how someone would get that from it. -_-;
She may not have gotten that far, Elanivalae.
And she certainly isn't the first parent to come on this board and feel this way. Very few stay. It really saddens and frustrates me. If people want the parents to understand the children, they need to take a second and try to understand the parents! Not speaking to you, Elanivalae, just in general.
And THIS parent (Berit) was probably more Aspie than NT. Interesting that even she couldn't feel welcome ...
You make some interesting observations, Louise.
Maybe two boards would work ... that will be for admin to decide, of course. But it's nice you are trying to find the middle ground.
I guess I assume that if I can't get along with everyone here, then how can I expect to get along with my own child, as he grows and changes? So, if I get it wrong, I try to figure out where. If people seem harsh, I try to find a way to soften the discussion.
But, I do have an advantage at home. I can tell him, "stop, we're done with this!" and he has to listen :wink: . But, long run, it's probably better to know how to work it out ...
So ... I guess, it's complicated. What goals the forum should have with respect to parents that come here. But, then again, we parents really aren't this site's mission ...
I'm rambling ...
Well, I have a work deadline and it's insane so I'd better get to it or I won't be home tonight until after the kids are asleep. They would hate that.
You make some interesting observations, Louise.
Maybe two boards would work ... that will be for admin to decide, of course. But it's nice you are trying to find the middle ground.
I guess I assume that if I can't get along with everyone here, then how can I expect to get along with my own child, as he grows and changes? So, if I get it wrong, I try to figure out where. If people seem harsh, I try to find a way to soften the discussion.
But, I do have an advantage at home. I can tell him, "stop, we're done with this!" and he has to listen :wink: . But, long run, it's probably better to know how to work it out ...
So ... I guess, it's complicated. What goals the forum should have with respect to parents that come here. But, then again, we parents really aren't this site's mission ...
I'm rambling ...
Well, I have a work deadline and it's insane so I'd better get to it or I won't be home tonight until after the kids are asleep. They would hate that.