Should parents have to "change" things for us

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I read alot of posts and I notice how alot of you talk about doing things differently for your AS son and I realized I never got any of that in my childhood. My parents (my dad and stepmom especcially) made me (and still make me) do many many many things that stress me out, for example when I was younger they made me try to learn how to ride a bike (still can't) for about 4 straight summers even though it was clear that A) falling constantly was stressing me out B) it was clear that I had real bad problems with motor control and C) it was making me the perfect target for the neighborhood kids to make fun of even if I was older then almost all of them (5 against one balances that out real quickly).

And theres plenty more things like that in my past but like still now whenever I go over there they insist on dragging me to the store (granted its because me and my youngest bro sometimes fight (but then again what bros dont)) even though I say time and time again that the noise is too much especcially during peak hours when they insist on doing it! (This also is one of many things that they do that they just shouldnt.) Also I should note that I didnt have this diagnoises thoughout much of childhood though thats hardly an excuse considering they can see differnces as good as the next person. So heres my question... is it too much to ask that Parents make some consessions for us so we dont end up locked in our rooms for a week trying to recover.

first let me say that i empathize with you about your parent's lack of respect for your troubles....my parents are quite clueless and dysfunctional~always talked right over me & decided what was best for me, regardless of what i said or did to refuse.....
to get to your question~ i think that sometimes it's good to push your child to try & attempt that which they feel they cannot do. sometimes there is success~of course, sometimes there's not. i think it's up to the parent to be aware when their child is overstimmed, frustrated and just not able to focus or simply uninterested....of course it would be better if parents were aware before the child was overstimmed and frustrated. my expectations for my son have changed since his dx...that's not to say that i have lowered my expectations~just changed them. so many things just don't really matter anymore~i used to worry about how he only got a B in Math...heck, now I'm just happy that he's going to class without meltdowns.

You remind me so much of my own son when I read your post. It is a hard balance to strike as a parent of an Aspie... In my own experience, I do make concessions because life is hard enough with my son, that I don't need to create more stress for him. But, as I say that, I also want to expose him to new things that may be a bit out of his comfort zone to develop interest and help him with navigating new situations. As a parent, I have been on the receiving end of other people's judgement (parents of nt's and non-parents) questionning my logic and whether the outcome forces my son to become too dependent on me. My only goal is to see him fulfill his goals and to be able to succeed in this world that can be very foreign to him.

For instance, my son wanted to try to be a part of the summer swim team a year ago and so we got all signed up and went to the first practice. We made it to the door of the natatorium and he looked at me and said, "No way..." I really struggled at that point if I should make him go or not. But, when I really looked at his stressed breathing and posture, my heart broke for him and new he simply wasn't ready and that was okay. Maybe we will try this Spring. I hope your folks realize that you are a real blessing to them and what you bring to the table is unique and offers so much to learn from. Best of luck to you and remember, your parents are probably neuro typical and we don't always get it right the first time or even the first couple of times.

Yeah I dont have any problems with pushing your kids to your limit but theres alot of things I just never will be able to do (ride a bike (well I might be able to learn now but back then when I could stay on it for more then 5 seconds you think they would stop making me try for hours at a time) or going to the store (which yeah of course Ive done before but afterwards I felt so overstimulated that I just wanted to spend all my time in my room, which is pretty impossible over there as my room has never had a door so I just got more overstimulated) and when my parents dont even considering changing one lil thing for me (though they do my bros but thats an entirely different story entirely) it just makes me so frustrated.

Since I have alot of sensory issues also - I can usually understand what may be a trigger for my son and I know that sensory-wise there is little to do to get over that. My husband doesn't like that I try and avoid things like crowded malls or stores and busy restaurants. The problem though is that people who don't experience this stuff really have no clue how much it effects you. Over and over again people act like it is a psychological issue not a physical one.

However, I also feel that parents can not let kids run the household. There have been times out of necessity that I would tell my son we have to stop at the store even if it's crowded and that we are going to see how fast we can be. Just by acknowledging his feelings and giving him the game plan that sometimes helps and then following through be grabbing what we need and getting out of the store and not dawdling. So, maybe instead of pushing the word nudge would be better. However, like on some occassions - if he grabs his ears and screams and says the baskets are making too much noise than I usually don't try. Hey - I prefer to avoid this stuff myself.

So, I don't think parents should turn the whole household upside down to completely accomodate one person - but I think being considerate of each other is what family is all about.

Perhaps I should have said make adjustments for us and not change things... sounds less extreme. And yeah any clues about what will happen would help me too (told parents as much still wont do it, not that there the type that know half the time.) Part of my problem is I will sometimes go to retail stores and malls which I can handle as by myself I always have a mission in mind and my parents cant get that if I can take my mind off the noise and stuff I can deal with it 100000 times better.

Generally I shop with a purpose in mind - the mission - and like to complete that as soon as possible. I can clear through a store in minutes especially if they have a U-SCAN - I LOVE those things. No cashier to deal with and no one touching your groceries. My husband on the other hand likes to go and look at just about every item in the store and goes back several times to the same aisle. If he takes too long I usually take our son out to the car and we listen to the stereo or take a walk outside if it is nice.

Our son was't diagnosed until he was 10, and up until that time it was hit or miss trying to figure out where we could and couldn't take him, and above all why?? We'd never heard of Aspergers, I knew of Kanner's autism of course, but that wasn't ever a thought.

I remember one trip vividly, he was 8 or 9 and needed new underwear for school. We went to Kmart (god as my witness) and we were standing in front of the men's underwear (he's a big boy - at 11 he stands 5'5", 170 lb, wears a man's size 11 shoe). My son was having a meltdown because he wanted the kind with FTL on a grey band, and all my husband could find in his size was ones that said Hanes on a white band. Son was having none of it. We were attracting a crowd. I found some that said "fruit of the loom" on a white band. Nope. Son kept hollering "FTL grey band" and at this point he was covered in tears and drool. Not good. I turned to the crowd and said "you can all walk away now, we're just rehearsing for the Rainman remake, Thunderboy". I have no idea where that came from but people started walking away, still shaking their heads.

Now we know a *ton* more, certainly not everything, but have so much more information and understanding of what happens to him and why. He keeps it together during school very well, and so when he comes home he is permitted to go to his room for an hour, he spins on his chair to "let it all out", does his homework, plays some video games. By 4pm however he has to come out, because he has chores, vaccuming, empty the trash, that kind of thing.

I do push him, to a certain extent, because I know I'm not going to be here to clear a path for him always. He may have to live alone, buy groceries, wash his clothes, etc. I want him to be self-sufficient, and be able to handle himself. However, if we are going to change the routine (going somewhere different for dinner one Saturday night for ex) we give lots of prewarning and countdowns.

I think that this has begun to work. About six weeks ago I had to leave from work to the ER, I actually went home and my husband drove me to the ER after the kids got off the school bus. My son was pacing at first, needing to get home, it was 3:30 and he needed to be in his room right then, not at a hospital. However he didn't meltdown or cry, or even handflap. I finally told my husband to take the kids home to eat since I was clearly going nowhere for hours (turned out to be a pinched nerve) and when they came back at 8pm to get me, son was as happy as a lark, even though he'd normally be watching an hour of tv then.

I think it's important to keep him from doing what comes naturally to him, which is to crawl further and deeper into himself, but as gently and carefully as possible. Of course summer break is nearly here, talk to me in August!!

I don't exactly know that crawling further and deeper inside is necessarily the issue. I think the main thing is that many people on the spectrum don't like change and tend to react by withdrawing out of necessity to feel safe and deal with overloaded sensory systems. They need to do that to regroup sometimes. I don't particularly like change or surprise- and that is something that I just learned to accept is probably my natural reaction to it. But I don't have to let that feeling rule the day or get discouraged if I first feel that way. As long as you have time to process your options, ect and have an "escape route" planned for new situations it makes things easier or at least more acceptable. Don't know if I am phrasing this right (lol). That is why pre-planning outtings helps but you need to remember to include alternatives too if things change. I learned that with my son recently - we were having great trips to the library because I had gotten him into a routine - but forget to remind him of some of the alternatives in case part of the routine needed to be changed. And on one trip the snack machine was broken so that part of our routine was effected and meltdown ensued. Now I try and make sure to go over beforehand (each trip)that if the snack machine is broken we can get a snack someplace else or if a playroom is being used we can skip that part. So, including flexibility into the schedule (in the form of options like plan B) is important too.

The devil is in the details, and it's always the Plan B that gets me! Somehow it's that ONE eventuality I hadn't planned for that happens!

Right now, we are working on loosening up his rigidity (if possible) in other areas. For instance, we love to take "mini-breaks" of one or maybe two nights away from home. Being a state employee, I get a decent discount on a room, and we can get out of this small town where we live.

Generally our son enjoys these jaunts, he loves the car ride, and as always there's the standing promise that if he sees a train museum and it's open, we will stop.

However, the only way my son will wash up is to take a shower, and he will not take a shower anywhere but in his very own bathroom at home. He will not even shower in the master bath in our home, which was a real nightmare when the kids bathroom sprang a leak that was a week in the fixing.

One night isn't sooo bad, we've discovered some heavy duty "body sprays" for boys. But he needs to shower at school next year for gym, and the mere mention of it sends him into a frenzy.

See if you can get him into the last gym class of the day, thats what I always did, may not be the most sanitary thing in the world but it seemed to work.

I don't know how flexible his school might be - but maybe this is something you can get a letter from the psychologist or have it written into his IEP that he can avoid the shower part if he is not ready. To be quite honest - I did not even take gym class in high school even though it was a state requirement. I did not have a formal diagnosis of Aspergers - I had a major depression before high school and was extremely anxious. They decided that gym was too much for me and I'm sure it would have been - I only had one or two classes and I couldn't handle it. I got an excemption every year and in my senior year agreed to fulfill the requirement by being the teachers aide. It was a small school and by that time I was considered such a freak the gym teacher just left me alone and I just used the time to read (lol).

He has no problem with gym class, he takes it everyday now, it is a daily requirement here. And I *want* him to be able to shower somewhere other than just ONE place on planet earth. I realize that showering in the middle school locker room probably isn't the least psychologically damaging place to start, but it puts a real damper on our ability to travel beyond a few hours away (and where I live you have to go at least 5 hours to get somewhere that is, well, somewhere!) when he clings to the walls for dear life and screams like we're skinning him alive if we try and get him to shower elsewhere. He can't tell me what the problem is, and we've only lived in this house for 4 years so it's not the only shower he's ever known. Matter of fact, the first year we were here, we went to Dallas for a solid week, during which time he showered in the hotel shower. So this is something new, and I guess we have enough *old* rules and rigidity that I want to keep new ones to a minimum.

He likes taking showers, he takes long ones, he even filled the tub one night last week and took a soak So he has no problem with getting clean, it's just where he does it.

Could it be an OCD type thing? Is he able to respond at all about why he will only shower in his shower at home? Maybe he thinks it is gross to share a shower with someone else. He might not even know what is bothering him about this or he might be too embarassed to say what it is.

But with the school showering requirement - maybe that part could be postponed until he gets a better handle on it. You don't want him doing that in the shower room at school - even if has had had plenty of meltdowns in class this would be something his classmates might wonder about and tease him over. Also, he might not have problems with gym class now because this is not a part of it - but if he knows showering is a requirement he might not want to go to gym or even school if he has that much of an aversion to it.

We are going for an overnight in May, and I guess if he won't shower then in the hotel, I probably need to give it up for now.

He can't seem to verbalize to me why he won't shower elsewhere. And by elsewhere I mean even in the master bath in our home, it was a tough few days when there was a leak in the kids bathroom!!

He doesn't seem to have an aversion to dirt, or display any kind of OCD behaviors, so I'm not really sure what the cause is. I'll just write it off as another one of his quirks.

I might be able to add some insight into the shower issue from my own experiences, and why I have the same aversion at times, and why they may bother him.

The showerhead. Some "foreign" showerheads are not very comfortable because they may spray water forcefully, or scatter it all over the place. I like to have a spot in the shower I can stand in where the water doesn't touch me.

Water temperature: He may have been either scalded or frozen by poorly regulated water...likewise the valve in the shower may have been hard to adjust, resulting in an uncomfortable suprise.

confined space: some showers just feel cramped, especially if the lighting inside is a bit dim, and the ventilation is poor. Clausterphobia can build up quickly in a warm, cramped space like a shower stall!

Noise: Some showers and bathtubs have plastic liners. I can't stand the sound of the water hitting these. I prefer my cast iron tub and the ceramic tile walls because they dampen the noise of the water hitting them. One of the things I was also very fearful of as a child was the exhaust fans in bathrooms. I would turn on the lights and come running out if I heard a loud fan spool up! Public showers can also be very noisey as voices, and other noises reverberate on the hard surfaces.

cleanliness: Something that definitely bothers me. I like to have a perfectly clean shower. I can't stand putting my feet on a slimey floor, or seeing hard-water stains on the walls of the shower. This is especially a problem when dealing with public showers, and why I have had an aversion to using showers at the gym.

Water quality: This can bother me even to this day. Water that has a bad or unusual smell really gets to me. Likewise if the water has an unusual taste. (yes, I sometimes get shower-water in my mouth while showering!) "Foreign" towns can frequently have unusual water qualities, as the source of water, and the treatment methods are different than at home.

Architecture: The appearance of some bathing facilities can sometimes be a little daunting. Although I've learned to appreciate some of the older architecture, walking into the bathing facilities of older buildings can still be fearful to me to this day. I'm not sure why, they just look daunting. (Think of the bathroom in Harry Potter's "Goblet of fire")

Hope these ideas help!