Parents on the spectrum

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On the subject of school functions: I don't know if this is going to help, but I just accept that they are going to fry my brain. I go in with a firm grip on the little ones, an ingratiating social smile, and the instruction to simply not speak held firmly in mind.

By the time we leave, I've still got a hard grip on the little ones, the social smile has turned into a maniacal rictus, and though I have generally managed to refrain from speaking, all I can see is the door. We get the hell off school property, I park somewhere, get out, and smoke. We drive home the long way (which I realize is not going to work for everyone as I am blessed in being relaxed by driving especially at night as long as the roads aren't big-city congested). Sometimes I have another half-cigarette in the driveway, sometimes not. But by the time we walk in the door I feel like a human being again.

I don't think there's any possible way for an Aspie parent to pull off the perfectly NT routine at a school event. Too much, too many. Too loud, too much to track, too much. But-- you don't have to. You don't have to be Chatty Mom or Friendly Dad. I guess it would be nice, but it's gravy. It helps me to watch and to realize that most of the NTs there are only talking to people in the family groups they came with. Also if you listen to their comments, most of them aren't enjoying the crowd, the heat, and the ambient noise either. It doesn't fry them like it does us, but they're not pleased with the situation or oblivious.

Focusing on "being normal" and all the things you are/aren't makes it harder. Improves nothing and makes it more miserable. Don't waste the energy that you need to be spending on getting through unobtrusively.

All you have to do is show up, get through without major incident, and get out. Then you tell your kid how wonderful they were-- helps if you can pick up a couple concrete details-- and kiss them on the head. Really-- this is what my dad did with me and what I have done with DD11. It WORKS.

In other thoughts...

I don't know about you guys, but conflicting instructions drive me nuts. My MO is comply, comply, comply and then everything will be all right (though I have major problems with cognitive dissonance if I believe I'm complying with something that is wrong, my impulse is to comply anyway while I look for a way to change the situation); it is impossible to fully comply with two or more mutually exclusive instructions.

Right now I have a psychologist telling me to throw the kitchen sink at DS5-- medication, therapy, classroom aide, the lot. OTOH, I have everyone at school and DH telling me that's not necessary and that I'm going to make bigger problems for the kid by overreacting (kindergarten specialist's exact words: "We read the psychologist's recommendations and all went, "No. No, no, no. This is not a good idea. PLEASE don't do this to Buddy."). In their opinion, I should do nothing (or anyway change nothing, as I'm not doing nothing now); DH takes it so far as to say I should stop mentioning any possibility of a problem. My therapist and I are in the middle, thinking he could benefit from a classroom aide (on the same principle as housetraining a puppy) but that's all.

I want to SCREAM. I want to yell at people to make up their minds, that I don't care what page we get on, but we all need to get on the same doggone page. Regardless of the tone it's said in, I know the response to this-- That is the point at which everyone looks at everyone else and says, "I agree. So everyone, get on my page." Then I shut up and start spending all my energy fighting the urge to do a facepalm (offensive) or bang my head on the table (disruptive).

At this point, I'm complying with the school. With a kindergartener, a 5th grader, and two more below school age, I will have to work with them for many years to come. We might as well be allies. I can find a different psychologist-- I want to anyway. I can always interject my opinions later-- like when things continue to progress in an undersirable direction and they end up seeing it my way in six or nine or twelve months anyway. I can have my private little moment of "I told them so" vindication and then get on with life.

But-- how do you other spectrum parents manage to cope with conflicting instructions?? I keep having this image from my intensive therapy days. They were testing the fire alarm, and made a PA announcement telling people to ignore the alarm. The alarm continues to go off intermittently for the next hour (and at this point I should add that Daddy was a pyrophobe who thoroughly conditioned me to get out of any building immediately upon hearing a fire alarm; really-- he was one of those "get-up-at-3-in-the-morning-and-have-a-fire-drill people).

So the alarm says, "Leave." The announcement says, "Stay." I stand in the hallway taking one step toward the conference room, then one step toward the exit. Finally I look at people, say, "Conflicting instructions. Brain frying. Windows has encountered a problem and needs to close. I'm outta here." They are all highly amused; I take my cup of coffee and bagel outside and come back when the testing is complete.

It was humorous. It's a humorous image. But taking my cup of coffee and going outside, as a metaphor, is not a viable way to parent my kids or live my life.

I am happy my daughter is how she is. She is happy. She is growing. She is healthy. She enjoys her life. She has friends. She has interests. She is three. She happens to be classically autistic.

I am happy I am how I am. I am mostly happy. I am pretty healthy. I enjoy my life. I have some friends. I have my interests. I happen to be very aspie.

We connect in a different way than she does with her NT dad. I am happy that we have that.

Why shouldn't someone be happy for how their child is? Sure there are times that are challenging. Sometimes very challenging. I wish that I had had a parent who "got" me when I was growing up. It would have avoided so much trauma. I just dn't buy into the idea that being a parent to an AS child is meant to be some kind of terrible thing. It isn't terrible.

Conflicting instructions is a big struggle for me. I also have the same problem with my kids and the various therapist and professionals and well-meaning relatives. Everyone has an opinion and they all seem valid. So I start out in one direction, then as soon as I hear the other advice I start going in the other direction, and on and on, and I will just go nuts doing that going back and forth, back and forth. Because all truths seem plausible and equal, and that means I have to make a choice. And I am terrible at making choices, whether big or small. But these choices are weighted with our children's future in our hands, and it is daunting. If we don't make the right choice, the child is the one who suffers and then we suffer again by proxy. My husband seems to feel that all choices being relatively equal, you just pick one and if it doesn't work out you can always try the other option. He is much more comfortable in making decisions than I am. But if I leave the decisionmaking entirely in his hands I don't worry any less about the decision, I just feel a tiny bit less guilty if it turns out to be the wrong one LOL

How do you guys do being organized? I have barely enough ability to stay organized myself. I want kids at some point. I am just having the difficulty of finding a work life balance, meeting a good person AND staying in a state that is not chaos. I was told that I have enough work with just myself. I have been getting some coaching, but wanted to know how you all do it.

---

Born without an organizational bone.

I've dealt with the conflicting instruction thing, but my solution to it probably isn't any better. When I'd let in every person's opinion, I wound up so confused about what to do and overwhelmed that I just felt frozen. So now, often, anything another person says goes in one ear and out the other. I do what feels right to me, and other people's help/opinions/life-experience-stories mostly go in one ear and out the other. I know it isn't good, because, well, there are probably moments that I could use the help. But for now, it's better than being in that awful, frozen, "stuck" state every time I have to make an important decision. Before I was like I am now (stubborn, not listening), I tended towards the opposite--to get out of the "stuck" state, I was just going with the advice of whoever had spoken to me most recently. Then, someone else gives me conflicting advice? I'd totally forget about what the last person told me, and go with the new advice.

Me: Which way should I walk to go to the grocery store? Left or right?
Person 1: Right.
Me: *walks right for a block, then bumps into someone else.*
Person 2: You're going to the grocery store? Turn back around, you'd be better off going left.
Me: Oh! Okay, thanks. I'll do that. *walks back the block, and bumps back in to Person 1*
Person 1: I thought I'd told you to go the other way? It really is the quickest.
Me: Oh, sorry! I totally forgot. Let me try that again.
*wash, rinse, and repeat, until Person 2 goes out for a coffee, and I continue on my way, getting to the metaphorical grocery store 4 hours later.*

That worked fine, you know, until I had kids. But, I have strong opinions about raising my children. That's important to me enough that I can't just let other people tell me what is best all of the time. So, now I'm at the other end of the spectrum, where I just make judgement calls myself, and other people be damned. This has spilled over into most of my life, not just parenting decisions. The only exception is if I specifically think, "I want advice about a specific thing, from a specific person, and am going to make myself willing to accept it."

This works out for me, because I am always right. (No, I don't really think this. I just act like I do, ha!) But, my husband? Very frustrated, I'm sure.

hi Guys I already made a post about thinking my dd may have AS but I also think I have a lot of traits as does my dh. I also have problems with organisation which may be more like ADD I am not sure but I know AS and ADD are related. In some ways I am able to cope socially and I quite enjoy many social things like meeting people at work, chatting and small talk even some parties as long as they don't get too loud, but I do not have any close friends and like to spend quite a lot of time by myself, also I've got a lot better at not being too weird now- I had more problems when I was young at school. I don't know if I would get a medical diagnosis but I feel that I definately have enough of these traits to affect my quality of life because so often I struggle with things that seem easy or at least not as difficult to other people of my level of intelligence

Parenting is one of my main concerns because I think of it as being my most important responsibility but I have a lot of struggles related to it, sometimes I feel like the worst Mum in the world. In fact learning more about AS and feeling pretty sure that we are all (dd, dh and I) affected by it to various extents has made me feel a bit better. When you think of the challenges the AS presents I guess I am doing OK, but of course I would like to do better and I think parenting skills can be learned and maybe ways of overcoming the challenges of the AS by alternative methods to the more common ones if these are difficult. I am not at all assertive and I have trouble with discipline. Also I think dd would benefit from getting into very structured routines but this is something I am not good at (unlike a lot of AS people another reason why I think I have some ADD traits rather than AS) my dh is very routine orientated but unfortunately he leaves a lot of the day to day parenting like getting dd off to bed etc. to me. I do try to have routines but these sometime seem to take a lot longer than I want or if dd objects I nearly always give in an let her have her way. So the routine is very variable from one day to the next which sort of spoils the point of it.

I have problems with all the common parenting problem areas. I am just like someone off supernanny it is depressing! Bed time is a big one (usually about 10.30 is when I get dd to sleep), getting dd to do things she doesn't like, getting her to wash and brush her teeth (something I have difficulty managing myself), healthy eating, homework, watching too much TV, that is a big one for us.

Keeping the home clean and tidy is a big challenge for me. I use Flylady which is quite helpful but I have never quite cracked it. I have some hopes that knowing a bit more about why I am having these challenges might help me to see where I am going wrong and I will be able to get better about using the Flylady system to get the house keeping under control.

Looking for thoughts about taking kids on vacation, seeing family.

With a great deal of effort and help, I have learned ways to respond to social problems children encounter in school that leave me with some measure of sanity and appear to help my children. It requires a major effort, but it is generally doable, at least with the really kind people I have steered our family toward whenever possible. And children seem to be thriving, at least I hope so.

But what about dealing with family members who are very civilized, very kind, well educated, but when they see something that they do not understand, politely reject? Does anyone have experience with this? Not referring to the direct nastiness that I have steered us away from, rather the kind if somewhat superficial acceptance during contact which is kept (by them) infrequent, which is accompanied by periodic disapprval of weirdness, or worse, the judgment that I am weird, children are just not well brought up and should be taught to not be weird. And then avoidance because of this perceived weirdness.

I want my children to have contact with family and feel that's really valuable. But I don't want them to feel judged as weird, nor do I want that for myself. And I don't want children to notice this disapproval of "weird" (thinking differently, conversational style) and think it is ok when they encounter it from others.

If anyone has suggestions, that would be wonderful.

Hi everyone,

I'm Aspergers, and have a 5 year old daughter who probably doesn't have Aspergers. It hasn't been too bad to be a parent so far, except for getting overstimulated sometimes. I know that young kids can really overstimulate even NTs sometimes, and my non-AS wife even comments about being overstimulated by our daughter. So with AS it can be espeically tough to endure the overstimulation for me, and I'll get sort of shut down by it sometimes. Our daughter tends to be louder than the average kid her age too, which can make it even more of a challenge.

I think as she gets older it will probably be easier for me to handle. I've always sort of done well interacting with elementary school aged kids or older, but it's been typically harder for me to handle toddlers and preschool kids due to getting overstimulated by them. My daughter is sort of still in the tail end of that preschool age, but I figure it'll be easier when she starts school (mainly because it will train her to actually not be as loud most of the time, lol).

I don't know if this would work for you, but I've always told my kids that everyone has different ideas of how things should be, and we can't control it if someone doesn't like our ideas or how we are, but we can accept them as they are anyway.

I tune out pretty much all the advice I get from relatives about my kids. And time has been proving me right. I can't control what they think or what they say, and I just have to let go of it. It gets difficult sometimes, though. No one likes to be judged. So sometimes it also helps to remind myself of all the ways I think they are messed up that I sweetly ignore.

Oh, and we never stay with family anymore. We rent a house in the area we want to stay instead. Breathing room.

(hope you don't mind me sharing; not sure if I'm AS or NT, but your concerns resonated with me)

Thank you for sharing DW. I was hoping for others to do that. I definitely do the hotel or day trip thing and it helps. And this may sound weird, but I've even discovered it helps to arrange visits to include fun activities and stay in a nicer hotel where things are calm and soothing and people talk nicely to us. I know it's only a bed, and it shouldn't matter much but it really helps me a lot to have a calm environment for the stay.

I do find it hard to pretend, but normally work hard at sweetly ignoring when others judge. Though yes, that gets very hard to do at times. Especially hard right now to pretend everything is fine as there is a family member who feels negatively about us and who is going to be spending time with other family, and leave before we get there. I was told I was welcome to come, but not while she is there, and though expressed nicely, it was made clear that this is because I don't keep her comfortable and happy which is perceived as my not trying hard enough. And that is certainly possible, but I don't have it in me to try any harder than I am now. Also, AS child takes it literally when she makes negative comments toward child and therefore is uncomfortable around her. Though what you suggested about turning others' judging upside down with acceptance may be something I can find a way to make work.

To me, my children are wonderful, smart, sweet human beings so this is very hurtful. Worse than that is my confusion how someone can judge and then write another off, because, yes, I can certainly judge others negatively, but writing others off as less than hurts my brain, and to write off a child is beyond me to comprehend.

I apologize for going on. Children are so precious! And your suggestion makes sense, kind of think that perhaps acceptance by me, by us, perhaps is the only reasonable response. Just difficult to understand and accept so much rejection. And even more so to help someone I love so much through it.

Yeah, I know. I have a really difficult time with one of my husband's sisters. But, really, it is her issue, her inability to see and to deal. I have my issues, I know that, I don't hide them, but I don't expect the world to cower or cater to them, I just ask that they understand I do the best I can and leave it be. But she can't let go and see that. She has so much anger, she piles so much stress onto herself trying to meet her own crazy ideals. I would never want to be her or have her life. She misses out not truly seeing what my kids have to offer and what I could offer. She complains about so many things I could easily help her with, like just giving her some free time by taking her kids for a while (and they do like me), but she can't get there, to the trust. So, its her problem. That is how I deal with it, knowing she has something broken that she just can't get past, and I can't fix it for her.

Your relative shouldn't need you to try harder for her, she should be able to accept that you are just you. That she can't is her problem, isn't it? When people judge like that it is because of their own insecurities and needs. Shoot, we've all had times we've done it, judged someone negatively, but I've never felt right about it. I feel like I'm wrong when I do that to someone, that it comes from an insecurity or weakness in me, so if someone does it to me, then they are the ones who aren't strong enough to be truly accepting.

I agree about the nice hotel, too. Something soothing about being somewhere nice.

Good luck with the trip. Visiting should be nourishing and it is a shame when it isn't.

We always stay somewhere separate as well even when we all travel together. Our son is 3.5yrs old and from previous experience, it's not worth all the well intentioned? efforts to fix his sleeping habits and get him in his own room, potty train him, stop him from jumping up and down, stop him from spinning, get him to repeat a word etc etc over the course of the holiday. We go for activities with the family then retreat to our little haven when it gets too much. My husband and I both have traits and are not the most social anyway so we always give ourselves somewhere to go to get away

Pretty down after seeing my family.

Nothing negative toward my children, but my older child noticed negativity directed at me and asked why I had not steered away from what, in retrospect, could have been predicted as a potentially problematic conversational issue. I missed what she saw in the moment and kept talking about what family brought up, there being no overt sign the issue might irritate, one of those times I think a lot of people can recognize instinctively, but takes me a lot of effort and some luck to analyze someone's exact circumstances. I would never have expected trouble lurked. And it often seems that no one else has any idea the effort it takes me. Worst part is where normally I would continue being sweet and try me best to forget about and ignore, I don't want to confuse Aspie child about social rules or have her see me fail to notice and react appropriately to the temporary unkindness directed towards me.

Definitely very proud of child and impressed by her ability to analyze conversational problems. Though think this kind of thing is why she does not talk more.

We were able to enjoy time away from the adults with the kids. Where everything was much easier. But what to tell Aspie child when she observes mom is unacceptable, however briefly, because of minor conversational errors. Because although I have spent my life listening and learning to analyze and trying to correct whatever people tell me I am doing wrong, I do not want that for my child and I don't agree with treating people as bad because they have a bit less conversational skill.

Sorry to hear that.

Sometimes there are things that we won't be able to teach our children. I've had no problem letting my kids know that I have my own weaknesses and difficulties, but that won't stop me from stepping into situations and doing my best. Being willing to try and accept that sometimes you fail is part of life.

I think I see. There are areas in which I am weak, and I may not be able to teach some things. But teach my children and show them not to be ashamed to be who they are, despite others discomfort and often their pulling away from me, or them, for seeming different. Teach and show my kids I still try and when some people are turned off that I am different it can't become huge. Difficult but I'm trying.

Often lonely, though. As I get older realize not a lot of girls and ladies like me out there. Never knew that till recently. Not finding the awareness of difference easy, not seeing much value in that awareness yet. And I think I will find it enormously helpful if I can find value in this.

I like your thinking, though. Which I think is don't be ashamed to exist and teach my children they should not be ashamed to exist, both directly and by example.

Thank you for that idea that I will try hard to use.

I think some things just are. Conversational cues get missed and stuff happens, but I think we can let go and not be too hard on ourselves. Knowing why the cues might have been missed is a bonus, but stuff happens and then more stuff happens. On to the next one