It's the things parents of NT kids take for granted

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aurea
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12 Apr 2008, 5:43 pm

This is a long rant.....just thought I'd warn you all now. :wink:


My 9 year old AS son J woke up Friday morning and came out to me crying. He didn't want to go to school. Apparently every Tuesday and Friday his class has sport and all the kids have to run laps around the park next door. J's feet,ankles and legs are really sore, still sore from Tuesdays efforts (I knew they were sore on Wednesday but I didn't know why or that they were still sore). I suggested I talk with his teacher and that he just walk it, NO! his legs are to sore. J has gross motor difficulties and orthodic inserts in his shoes, his ankles turn in one much worse than the other. I tell him I will tell his teacher no running until his ankles have been looked at again by the podiatrist. NO! He apparently (in his head) has to do this because he has to be in the top five so that he can compete in the inter school sports, but according to J he is to dumb and stupid and can't run and all the kids will tease him, he doesn't want to not try and stay at school during this time because he will be made to do school work and that hurts his brain and its hard and so on and so forth. In the end I gave in, he stayed home.

I took him out looking for new shoes, ones that may offer more support, ones with laces. I have made an appointment with his podiatrist to have his orthodics looked at but it will take a few weeks.

Something as simple as buying new shoes is a major event. J will reluctantly tolerate the shopping centre for half an hour to an hour tops before he starts to get over aggitated, stims, crys etc. I can't just go and buy any old off the rack pair of shoes.

The first trip out for shoes resulted in J trying on many pairs of shoes, nope no good, toes to tight, others got kicked off with no explanation execept NO I dont like them they hurt. the tongue in some shoes bothered him, the stiching in others bothered him, the heel depth was no good it hurt, the list goes on. My older son was with us he was trying to be helpful but was obviously getting annoyed to, he was embarressed because I was untying pairs of shoes and had piles around me ( I'm sure security was called to watch us at one stage) every shoe had to have his inserts fitted in before trying, J was stimming madly, making vocal noises, touching everything, refusing to look, refusing to co operate. By the last shoe stop J tried on a pair of shoes and said yep these are good. Hooray! we could all now go home.

The next day I carefully stick the velcro stickers to the insides of J's new shoes so that his orthodics dont slip. I put J's new shoes on his feet, Hmmmmmmm these shoes are miles to big! J likes them because none of the seams can annoy him, but I tell him he can't wear these because he feet will slide around in them.
I can't return them because I've stuck the velcro stickers in them now.

So it is now day 3, 3 entire shopping centres later and still no shoes that fit right.

It would be so nice to be able to just go by myself and buy my 9 year old a new pair of shoes, or even have him with me try on one or two pairs without having him roll on the floor, burst into tears, sing at the top of his lungs, or talk and make games out of the shoe tags and hangers. It would be nice not to have security follow me because we arent acting normal, it would be nice not to have strangers give us filthy looks, it would be nice not to have sales people even after you have explained to them that the shoes have to be just right due to orthodics and sensory issues not to try and hard sell crap shoes and tell me he will adjust, NO he wont!

I get so frustrated when I think about what my family has to do to do the simplest things, but then hearing from NT parents with NT kids tell me that they dont think there is anything much wrong with J. No? They have no idea of the amount of work that we all put in to get him to where he appears to fit in as well as he does. We don't do this for them, we do this for him, for his mental health and wellbeing.
The shoes was just one example, buying a pair of pants, that took my family and my sister more than 3 weekends to buy just one pair that he was comfortable in, and many pairs that he now just wont wear. Reading is another hot issue at the moment.

J appears to read extremely well, better infact than his 18 year old brother. If J likes the book it gets read so fast, faster then I can read. If he doesn't like it he wont read it at all. This has been an issue with his homework readers. He picks his book at school then wont read it at home. I spoke with his teacher about it, she is fine with him reading his own books from home as long as he brings them in to show her, she isn't worried about his reading. Im not either its his comprehension that bothers me, his teacher thinks its good, I'm not so sure. Its more complex than normal, whilst J can read really well, he can even retell what he has read almost word for word, for most this would mean that he is comprehending I would assume if the kid can retell what he has just read. Nope you take the words in the book away from the book and he is questioning what those words mean.
Most parents of NT kids (I thought I was one of them) assume that if your child can read and retell what they have read then they have comprehended it, in J's case I don't think that is so, and I don't know what I can do to help.

The list of things that parents of NT kids take for granted goes on as you all know. 8O I'm fine with all of J's differences, what I'm finding so frustrating is the complete lack of understanding from friends and family. Just because he APPEARS so normal doesn't mean that his brain is normal, some of the differences are extremely subtle, some appear to be the results of a pandering parent., some appear to be just bad/naughty behaviour. People need to look at the whole picture, they need to start listening. They need to have an open mind. They need to keep their uneducated opnions to themselves.

Aspergers is not some made up word that means that there is so little wrong with them that they aren't or hardly autistic at all.
Aspergers is an autistic spectrum disorder it is nuerological, he can't turn it on or turn it off at will.
It is complex.
It effects his entire life.
It isn't going away, he wont grow out of it, we cant cure it.
He is extremely interesting, he thinks out of the box, he cant be made to fit in a "normal" box.
J is J, I wouldn't want him changed.

Anyway sorry guys I just had to get some of that off my chest. :oops: Sorry if it didn't make sense. I am just so sick of defending myself and my son, I'm tired of explaining aspergers to uneducated narrow minded people who belittle his dx. Im sick of people saying its not autism, I agree J is no rainman, but his struggles are real and mostly well hidden for self preservation.

Thats my rant. Again sorry. (ps till next time lol :wink: )



krex
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12 Apr 2008, 7:18 pm

They are looking for a "cure" for autism but should be looking for a cure for the stuipidity and "lack of theory of mind" of some who currently have no DX.

I'm sorry you are having to deal with this stuipidity and lack of empathy. I am greatful that you at least know what is going on with your son. I am 44 and my parents had no idea why I was "so weird". So I am glad that at least you have taken the time and have the compassion to understand your son :D That will make so much difference in his quality of life. All of us have to keep trying to educate the public (the media is certainly not helping the situation).


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Triangular_Trees
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12 Apr 2008, 8:33 pm

Quote:
The list of things that parents of NT kids take for granted goes on as you all know. I'm fine with all of J's differences, what I'm finding so frustrating is the complete lack of understanding from friends and family. Just because he APPEARS so normal doesn't mean that his brain is normal, some of the differences are extremely subtle, some appear to be the results of a pandering parent., some appear to be just bad/naughty behaviour. People need to look at the whole picture, they need to start listening. They need to have an open mind. They need to keep their uneducated opnions to themselves.


I can't stand how there are so many nt's that know you can't have a problem if you are aware of what that problem is.

You know you can't make eye contact. Well then you have to be able to make it. Otherwise you wouldn't know that you couldn't do it.



Willard
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12 Apr 2008, 9:30 pm

I know it's endlessly frustrating, but I commend you on going so far to understand and accept your son's differences. Having grown up in an era before parents and educational systems even knew such a thing as AS existed, I know very well the experience of being treated as if your differences are simply some sort of attitude problem. I even see examples of that same sort of judgementalism and intolerance in threads on this very site, by posters I can only assume have not yet had enough life experience to understand how it's going to affect them when they actually hit the workforce and have to sink or swim. One can only hope that with time, and a good PR campaign, we can bring some kind of comprehesive understanding to the world at large, that a disability isn't always accompanied by a visible physical deformity.



sinagua
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12 Apr 2008, 9:38 pm

aurea wrote:
Just because he APPEARS so normal doesn't mean that his brain is normal, some of the differences are extremely subtle, some appear to be the results of a pandering parent., some appear to be just bad/naughty behaviour.


This definitely describes our life with our Little Bird. Family members always think we're either too hard on him, or not hard enough. Folks, ya can't have it both ways! ;) A lot of things appear to be just naughty behavior, and even as educated/informed as his father and I are, even WE sometimes have a great deal of difficulty ascertaining which is which. (AS kids are certainly capable of naughty behavior, after all.) It can be extremely frustrating. :?



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12 Apr 2008, 11:02 pm

aurea wrote:
I am just so sick of defending myself and my son, I'm tired of explaining aspergers to uneducated narrow minded people who belittle his dx. Im sick of people saying its not autism, I agree J is no rainman, but his struggles are real and mostly well hidden for self preservation.

Thats my rant. Again sorry. (ps till next time lol :wink: )


Aurea .... I agree 100%.

I had a little giggle at your comment about security following you because it happened to us this morning.

We were meant to meet my sister at the airport at 9.00am .... she was 20 minutes late. This might be no big deal, but to my Aspie sons who were stressed about being at the airport in the first place it was a HUGE dea.

So they were stressed and my 9 year old starting saying loudly, 'My book is a bomb. Giggle Giggle" and my 8 year old started saying loudly, "I can't wait to see the bomb blow up an aeroplane".

My husband and I tried to stop them from talking this way.... but they were so stressed they wouldn't/couldn't stop.

Within about 2 minutes the security guard with the sniffer dog came over and was having a good sniff around us!

Helen



mom2bax
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12 Apr 2008, 11:45 pm

:salut: i salute you and all the wonderful efffort you put into your son. i know it's got to be hard and you know that you are doing well and doing all you can, and if other people don't see that then whatever, but it is still frustrating.
i applaud and salute you and send you ((hugs)).



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13 Apr 2008, 6:09 am

I totally get the shoe and trouser problem. Although my son doesn't need inserts there are almost no shoes which are alright, and yes, ( after creating similar massive piles of shoes all around us!! :) ) we almost always end up buying big, so he looks like he's wearing boats. One problem is that they never seem to be wide enough for the length, so he has to get longer ones just so the sides of his feet don't feel "squished" too hard/rubbed etc.

And trousers can't have fixed waistbands, have to be elasticated, and softish, which for boys means almost the only alright ones are joggings. Girls I notice get to wear these things , soft and elasticated, so we looked at some but all have some girly "device" or colours which would make him even more conspicuous. :(

Thank god he doesn't go to school. The pressure is so enormous there to wear the "right" stuff etc.

ref: aching ankles/legs after school exercise. I had that as a 12-13-14 year old. I wonder now whether it was that not enough warm up time is provided for those with motor issues. Because I often ended up hardly able to walk after certain sessions. Whereas now I know I need to be gentle on myself. Perhaps it is part of motor stuff to need more warm up time. :?: I "bounced" aswell; was called "kangeroo", but I didn't understand what I did that was different at the time.

Good luck. :)

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13 Apr 2008, 9:21 am

sinagua wrote:
aurea wrote:
Just because he APPEARS so normal doesn't mean that his brain is normal, some of the differences are extremely subtle, some appear to be the results of a pandering parent., some appear to be just bad/naughty behaviour.


This definitely describes our life with our Little Bird. Family members always think we're either too hard on him, or not hard enough. Folks, ya can't have it both ways! ;) A lot of things appear to be just naughty behavior, and even as educated/informed as his father and I are, even WE sometimes have a great deal of difficulty ascertaining which is which. (AS kids are certainly capable of naughty behavior, after all.) It can be extremely frustrating. :?


So true and so frustrating! We have even been criticized by the same person for being both too indulgent and too strict! In the same conversation!

What gets my goat is the implication that we haven't tried to teach our kids something (i.e. basic social skills). As in a teacher saying, "L doesn't seem to know that saying 'I hate you' or calling names isn't ok. Have you ever discussed this with him?" Yup, pretty well every day for the past 6 months, lady!

My sons have a different approach for shopping trips. They will say yes to just about anything just to get out of the store quickly. Yes, yes, yes perfectly comfortable, I like it, it's fine, let's go! Then we bring it home, they wear it once or twice (so we can't return it) and realize that it is bothering them in some way, so it has to be discarded. We have a closet full of rejected clothes. :roll: My youngest sister has William syndrome and many of the same sensory issues. My mom never takes her clothes shopping. She buys her a whole bunch of clothes/shoes from a store with a really good return policy and then has my sister try them all on at home. She keeps whatever works and returns the rest, that way my sis avoids the stress of shopping and has a comfortable environment to take her time trying on the clothes/shoes. I think I may start doing that for my guys too.



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13 Apr 2008, 10:37 am

I still struggle with this, and I have a Master's in English and have worked in various disciplines in related fields. I taught English at the junior college, was a proofreader and currently work at the library.

My problem is, I don't drive a car, I don't consider myself an especially brilliant conversationalist, although I know what I'm talking about, and make embarrassing, stupid mistakes. Sometimes I think that if people could see how clumsy I am in daily life, they wouldn't believe I was intelligent.

I am not stupid. I learned English when I was six years old (my first language was German), read well above grade level in school, understood it, learned Spanish in high school, attaining a straight A average (although I can't speak it conversationally). People must get frustrated and think, "If she can do this, why can't she do that?" I often ask it of myself.



sinagua
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13 Apr 2008, 12:18 pm

aurea wrote:
My sons have a different approach for shopping trips. They will say yes to just about anything just to get out of the store quickly. Yes, yes, yes perfectly comfortable, I like it, it's fine, let's go! Then we bring it home, they wear it once or twice (so we can't return it) and realize that it is bothering them in some way, so it has to be discarded. We have a closet full of rejected clothes. :roll: My youngest sister has William syndrome and many of the same sensory issues. My mom never takes her clothes shopping. She buys her a whole bunch of clothes/shoes from a store with a really good return policy and then has my sister try them all on at home. She keeps whatever works and returns the rest, that way my sis avoids the stress of shopping and has a comfortable environment to take her time trying on the clothes/shoes. I think I may start doing that for my guys too.


Oh wow, I think you just made me realize what went "wrong" the other day with shoe shopping. :(

I thought our needs were pretty basic - a pair of slip-on shoes for my son. It was ridiculous - we ended up having to go to three or four different places, and one of them ("Old Navy," btw) smelled so awful chemically (don't know if it's a cleaning product they're using or what, but my son was almost gagging the moment we walked in, and I was having issues, too - we practically ran to the shoe section, saw they didn't have what we wanted, and ran out of the place holding our hands over our mouths and noses - curiously, the store was filled with shoppers, none of whom seemed to notice the stench :? ). We finally ended up at the mall and I found a pair of black Nike slip-ons that did meet our basic requirements, and the boy said "Yeah, they're good, they're fine, I like them, okay let's go home now!" and I happily, gratefully bought the shoes and we went home.

Those damned shoes have sat, unworn, in his closet for a fortnight. He still wears his old slip-ons, which are nearly falling off his feet with raggedyness. They are the kind of shoes Dickensian street urchins would wear - I feel SO embarrassed! I'm not too picky about what he wears, but I want him to look basically clean and well-kempt. I ask him why he hasn't worn his new shoes yet. He shrugs, not even looking at them. Says they're half a size too large, which is true, but still - they look awesome! And his old ones are so dirty/raggedy! He said the shoes aren't really what he wanted. He wanted some brown slip-ons, like he used to have a year ago. I ask him if he's ever going to wear the black shoes. He says "Maybe." That always means "no."

I nearly lost it, angry at the wasted money and effort. But I realized that he was probably just overwhelmed by the whole experience and being dragged to four different stores and just wanted it to be OVER. And I can totally relate to that. So what if I "wasted" twenty bucks on shoes he'll never wear? Me losing my cool on him isn't worth twenty bucks.

Anyway, thanks for helping me to understand what happened, and how to keep it from happening again. I love the idea about buying his clothes ahead of time, bringing them home, trying them on there, and then returning whatever he doesn't like.

p.s. Oh and AMEN to being told you're too strict and not strict enough, in the same conversation, by the same person!! ARGH! :evil:



Binarycow
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13 Apr 2008, 2:55 pm

Well, I can't speak about having AS children, but I do know how the sensory issues are with clothing.

What I do, when I find clothes I like, I buy five or six of them.

I have five pair of the same shoes. (Luckily, I'm grown, so I won't grow out of them)

Maybe if you find a shirt he likes, buy a couple in different colors, etc...

sinagua, you mentioned your child is still wearing his old shoes.... Maybe you can try getting another pair of them (larger size if necessary), The exact same kind. He might take those over a new kind, because its what he's used to.



puppylove22
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13 Apr 2008, 3:01 pm

hi i am 16 and am i all ready a parent , i had a stupid one night stand and know have a 3 month old baby



sinagua
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13 Apr 2008, 4:08 pm

Binarycow wrote:
Well, I can't speak about having AS children, but I do know how the sensory issues are with clothing.

What I do, when I find clothes I like, I buy five or six of them.

I have five pair of the same shoes. (Luckily, I'm grown, so I won't grow out of them)

Maybe if you find a shirt he likes, buy a couple in different colors, etc...

sinagua, you mentioned your child is still wearing his old shoes.... Maybe you can try getting another pair of them (larger size if necessary), The exact same kind. He might take those over a new kind, because its what he's used to.


Weird, because I actually do this myself. If I find a shirt, or a skirt, or pair of pants, whatever, that I like and fits me well and feels good, I'll buy two or three, in different colors, but sometimes the same color. I do this with shoes as well. If you look in my closet, you'll see six different colors of the same v-neck t-shirt, four or five of the same skirt (different colors), and shoes.



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13 Apr 2008, 4:27 pm

Ah, the shoe catastrophe. I remember it well, though I was on the other end of it. My mother finally gave up even trying to purchase shoes that tied because if one shoe was the slightest little bit tighter than the other, I could feel it and would spend up to an hour adjusting and re-adjusting until they felt right. Even then, they often didn't and the agony and frustration of it would bring me to meltdown. I can wear them now without any issue. Thankfully I have "outgrown" many of the overwhelming number of sensory problems I had during childhood. Like others, I also buy items of comfort in numbers!

I often looked around at other children during school and wondered how they did it like nothing. Shoes with laces, sweaters over turtlenecks, corduroy pants and jeans! What left me most vexed, however, was how people managed to wear underwear when the mere thought of it created sensory overload for me.

My mother often asked, "What the hell is wrong with you?" though she never actually made any move to find out. At least you know, and you are doing so much for your child. It isn't easy for you or for him, but it beats not knowing and pretending it will all just go away, like generations before us. Both of my children are on the spectrum, and it is a challenge - though thankfully their sensory issues are not as bad as mine were.


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