The "What's on your mind?" Thread -2017

[Willowy]

and I agree with arouetta. As someone who is a high functioning Aspie=I didn't have the support I needed until my mother pushed buttons to get the school to do something. I was very smart. In fact I was reading by 4. I could add and subtract by 6. I was bored in school and got in trouble for "reading" too much. I used to bring a book and put it in the middle of my text book in 4th to 12th grade and read the book while listening to the lecture-90% of the time same damn stuff I heard over and over. Back then I didn't want to call attention to myself.

So I found school a waste of time. I often jumped ahead and did the next 4 chapters before they were due. I was put into an IEP class and hated it. The teachers talked to me like a baby. You know what my issue was?? Too EMOTIONAL. I hated the kids. I hated the whole thing. I hated kids talking to me-because I have hearing auditory issues and sometimes takes me longer to come up with answers..when the internet came around in the 1990s=I was in HEAVEN. NOW I could COMMUNICATE!

Before I took jobs in the middle of the night and didn't want interaction with people-because I am STILL too emotional. But now the internet unlocked a way for me to meet up with other like minded folks. And now I have the information to work with and deal with my issues.

If school in the 1980s and 1990s utilized more things the students would have gone even farther. I was jealous of home schooled kids=they didn't have to deal with the social interactions that I dreaded. My favorite class was gym class when I could take my frustrations out in sports and art class=I worked with my hands and didn't have to deal with face to face communication..they gave me instructions to create work. And I did. It was the happiest I could be with what I had. I wish I had a real home life like most kids-but I didn't. My parents did the best they could with what they had.

High school was so much better than the other grades. I didn't like the IEP because kids called me hateful junk which only got me in trouble because I had a bad habit of punching people when they ticked me off. Yeah I was one of those. Angry mad all the time. Couldn't wait to be alone. Wore baggy ugly clothes. Looking back-I had a few good teachers but most of them didn't know what to do with me. I just mucked along the best I could.

In fact the one thing I loved the most- school dances-music. I would dance the entire 4 hours and the lights were dimmed and I didn't have to talk. Just sing and dance. I never had many friends and I often danced by myself..I was the freak on the dance floor but seriously when the music is going=it takes over and I move with it...it's like a totally new world..music is what made my life worth living. At least with music blaring I don't have to talk or listen-just dance and enjoy the music.

As far as disabilities I think we can do better. In fact I KNOW we can.

My middle brother and I did go to school for 3rd and 4th grades for me, kindergarten and 1st grade for him, after the youngest was born (to give my mom a break). I was SO BORED. I was reading fluently at 3 1/2 and some of the other kids could barely read, and I didn't want to wait around for people to stumble through the lessons, I'd just read ahead and answer all the questions then go back to my book. I constantly had a book with me and would read whenever I got bored, which was all the time. Fortunately the teachers didn't mind this, because their standard thing was to send someone to the reading corner if they finished early. So that's what I did, all the time. And I tested super high on the standardized tests, which made all the teachers practically hyperventilate. So academically I was OK.

Socially not so much. THE NOISE about killed me. I read through recess. I didn't understand authority hierarchies or playground politics. A person is a person, isn't that what you're trying to teach us? Haha, nope, they say that but don't mean it. They say a lot of things they don't mean. Adults lie to kids all the time. And I didn't believe them and didn't know how to play along. Adults hate that.

I probably would not have done well in high school at all.

I was reading about PDA (Pathological Demand Avoidance, not kissing in public, lol) as an autism-spectrum behavior, and, wow, that's my dad. I have a little of that, but not too strong. But he will just freak out if anyone expects anything of him. That's why he had problems in school. I'm not sure how he managed in the Navy. Probably because he was a machinist's mate and didn't have much contact with the higher-ups. Or because the ritualistic behaviors are clearly outlined so you don't have to guess at what they want. I know his immediate superiors were never very fond of him, good thing Navy men can't be fired by their immediate superiors.

For me, music=nothing. I have no attachment to music at all. I never listen to it on purpose; it just jumbles up as noise in my brain. Everybody thinks that's weird. I think my dad is the same, although he's never said it explicitly. But he has a tornado-safe room in the basement (we call it his Fortress of Solitude) with his gun safes, a TV, and a laptop, and will sit down there for hours with the TV on mute, cleaning his guns and playing on the laptop, in complete silence. And I don't think I've ever heard him listen to music. Maybe it's genetic.

 

[arouetta]

Another option would be to make a nacho run to 7-Eleven.

 

[foxxycat]

Yes I remember in highschool I ate my lunch standing up at the window where we return trays=there was a lady who I talked to every day..I don't recall her name now but I hated the lunchroom. I couldn't stand the buzzing and talking all around me. Now back then we didn't have ear buds..I bet now I would have been fine with sticking my music in my ears but I still didn't like sitting around a room with people staring/talking about me..back then we were not allowed to sit outside under a tree to eat. Which I hated.

Study periods didn't bother me because we were not allowed to talk so it was quiet.

As far as grade school-elementary school- I do remember not understanding how to read expressions on the girls faces.

I wanted to play football with the boys. or Soccer or ride bikes and do tricks on it. I wanted to climb trees and do boy stuff but didn't understand why I was made to play with the girls who gossiped and made fun of other kids. I hated it.

I do remember reading at recess as well..I think I was in 3rd grade..2 girls ganged up on me and tried to beat me up. I whomped their butts and no one ever bothered me again until high school. The girls were afraid of me I found out later...

and my love for cats was discovered at a young age. Going over people's houses if there was a dog or cat that was where you could find me. I stayed away from people...but kitty or doggie? I was all over it...and some music on the radio..country or pop didn't matter to me.

My dad used to do chimney cleaning and often I would coax their cats to come to me..I always behaved and didn't do the screaming and running around thing like most kids. I was happy outside in the sunshine or on the floor with their kitty...I think I was a good kid...I hope I was.

 

[artiemom]

You might be able to buy Revolution online for less than what the vet charges. Try DrsFosterandSmith.com and 1800PetMeds.com

I just saw at the local SPCA is offering pre-orders of their limited quanitity holiday cards. It's twelve cards in the pack, 4 designs, for $25. I think the cards are blank inside. Proceeds benefit the SPCA's programs. I'll buy those and support a good cause at the same time

Is that Angell Memorial? I have to check it out, if it is... but, who am I kidding?? I am broke, financially....sigh.. I just cannot adjust to this lifestyle.. man... it is killing me.. used to have a good income.. now, it is crap... sigh... venting..

 

[Mamanyt1953]

i got to feeling very anxious about madonna last night because she's had some health issues recently. she had lost weight and was having watery diarrhea and crusts on her eyes. i took her to the vet and found out she had hookworms and gingivitis. i felt like i was pretty much awful for letting her get both, and on top of that even with the medication she still has diarrhea..

A little pumpkin in her food may help with that.

And....I forgot the reason I came here to post when I saw all the posts I missed.

I am very low on work clothes at the moment, but I've gotten my hands on bottoms that are more ivory than khaki and now I've got the right color of Rit Dye. I'm going to hit up Goodwill tomorrow for more bottoms, since now I can buy completely white ones and then throw everything in the wash with the dye. But I have a question about one of the bottoms that's pretty close to ivory I already have.

The material felt very strange when I was hemming the legs to my length, almost like a tablecloth, so I looked at the label. It's 45% cotton and 55% linen. I've never worn anything with linen fibers before in my life. Is this something I should throw in the dye bath, or should I leave it the original color and make it a daily wear instead of work wear?

Linen is a natural fiber, and should dye beautifully. Do be aware that it is prone to wrinkling, though.

Haunted Refrigerator Night: 30

I LOVE THAT! I know my refrigerator is haunted! The ice cream disappears out of it OVERNIGHT!

Having a severe developmental disability is not an excuse, it's a reason.

I utterly agree with you. Unfortunately, too often parents, caregivers and teachers allow it to become an excuse, and those with the disability don't perform up to their actual potential. And that's a shame.

Anyone here get weird food cravings?

Nope. Not unless you count green olive with pimento and mayonnaise sandwiches as being weird.

 

[foxxycat]

sounds like you should add baloney to that sandwich... Mamanyt1953

 

[Willowy]

too often parents, caregivers and teachers allow it to become an excuse, and those with the disability don't perform up to their actual potential.

It should not be up to "parents, caretakers, and teachers". Disabled people and neurodiverse people are still people and must be allowed to exercise their autonomy, to make their own decisions. It is not anybody else's right to decide what my "potential" might be. So many neuro-atypical people have emotional problems from being forced into situations they were unable to deal with.

So, while, yes, parents and teachers and caretakers should encourage their kids to expand their horizons, it's a fine line between that and denying autonomy. They should not actively refuse opportunity to their charges but forcing them to do things is not cool either.

 

[arouetta]

It should not be up to "parents, caretakers, and teachers". Disabled people and neurodiverse people are still people and must be allowed to exercise their autonomy, to make their own decisions. It is not anybody else's right to decide what my "potential" might be. So many neuro-atypical people have emotional problems from being forced into situations they were unable to deal with.

So, while, yes, parents and teachers and caretakers should encourage their kids to expand their horizons, it's a fine line between that and denying autonomy. They should not actively refuse opportunity to their charges but forcing them to do things is not cool either.

It might play out a little differently when a disability is involved, not really sure as I have only the one kid and no nieces or nephews, but it seems like that's how it is for all kids. Kids will do the absolute minimum unless forced to expand. How many times have we said "I didn't know my kid could do that" because we never required X behavior that we thought beyond them but someone else did and they rose to the challenge? How many times have we heard "I hate X (food, object, activity)!" but when made to interact with X, whether through encouragement, bribery, blackmail or "one bite and then you can toss it" they find they like it? Growth involves discomfort.

Once you start talking late teens, maybe even mid teens depending on maturity level, then the kid can start to own his or her life and disability and make plans for what to do. There's still a teaching need though, I would not expect a 16 year old to fully understand the implications of being disabled for life and fully understand what is an obstacle to find a work around and what is a barrier that just can't be moved. Prior to that age though parents, caregivers and teachers are the ones that must push. If I and some therapists and some doctors and some teachers hadn't pushed my daughter to the limits of her endurance and even beyond them, she'd be low functioning and in a group home or even a nursing home.

Example - I don't know if they do it now, but back in the day when we were still trying to figure out how to treat autism, we would put peanut butter on our kids so they would experience "sticky" in a safe setting and learn that it's not the danger their senses were screaming that it was. Now? My daughter no longer freaks about sticky and thinks crunchy peanut butter ranks up there with chocolate cake. She still dislikes sticky stuff, and I do too, but exposure therapy desensitized the out of whack sensory system to where she doesn't have a full-blown meltdown when touching the dough for chocolate chip cookies.

Someone telling me how to manage my bipolar disorder, yeah that's annoying. Someone trying to force their idea of treatment on me, that's a removal of autonomy. But I cannot say the same about the little 7 year old girl in a full blown manic episode that was on the floor screaming one day at my daughter's elementary school. Giving her autonomy to manage her own illness and decide her own fate would be a barbaric cruelty. Nor can I say that someone saying my illness needs to be treated, period, is a removal of autonomy. Sometimes even adults can't see where they can push themselves further and a caregiver needs to give a direction and a bit of a kick in the rump to avoid enabling a symptom/behavior that could actually be managed better.

 

[Willowy]

But I cannot say the same about the little 7 year old girl in a full blown manic episode that was on the floor screaming one day at my daughter's elementary school. Giving her autonomy to manage her own illness and decide her own fate would be a barbaric cruelty

There's a line. Somewhere. That's the hard part, is finding that line. Obviously, parents and caregivers need to make treatment decisions for small children. A little kid is not going to decide for themselves to take antibiotics either. But, idk, there IS a line. Punishing/shaming for stimming, for instance. Forcing eye contact (my personal pet peeve. Nay, beyond "peeve"---I HATE it and consider it abusive. I swear I might hurt the next person who tells me to look them in the eye). Most "treatment" for ASD involves shaming people into behaving "normally" so that they won't be embarrassing to their caregivers. Having to suppress your own personality is exhausting and infuriating. I can't even give any advice about how to find that line. But there is a line, perhaps the difference between a life coach and a drill instructor. The life coach ASKS you what you want the end result to be, and helps you achieve it. The drill instructor decides what HE wants the end result to be and forces you into it. I'd prefer to err on the side of autonomy.

As for someone else determining "potential". Let's say someone comes up to you and says "I think you would make a great president. I've decided you have the potential to be the President of the US and I'm determined to see that it happens". You say "but I don't WANT to be president". They don't listen. They keep pushing you to be president and maneuvering your life so that you're kind of forced into it, because they think you have that potential. But that's not what you want!

Just. . .listen. Listen to the individuals. Respect them, their choices and autonomy.

 

[segelkatt]

arouetta Linen is fabulous. I don't know how it will take the dye. But do wash in cold water. I put those in the dryer on low for 5 min then hang dry. Then they don't shrink. Linen is a wonderful hot weather fabric. If I could that's all I would wear. Love linen.

But it wrinkles something terrible. Now linen and polyester mix fabric is wonderful, it has all the advantages of both.

 

[Willowy]

Kids will do the absolute minimum unless forced to expand.

This, also, is not universally true. This is what happens when children are raised punitively and in a forced education mindset. Children who are allowed to exercise their autonomy will do a lot more than adults think.

John Holt is a good author for some thinking on that subject.

 

[arouetta]

Most "treatment" for ASD involves shaming people into behaving "normally" so that they won't be embarrassing to their caregivers.

Uh, no. I've been involved in treatment of ASD since the mid 90s. There wasn't a blueprint for how to help our kids back then, so anecdotal accounts of never before tried treatments were swapped back and forth like booze at a BYOB party. Very, very few, if any, of the things being passed around involved shaming the kids. In fact, shaming was pretty much universally hated. Not much else back then had any sort of group agreement, but you say that your MIL shamed your autistic kid for not being potty trained, wow was there a consensus that positive reinforcement is the only way to go and the kinds of things you can say back to your MIL as you are physically tossing her out of the house. There may have been major disagreements over diets and medications and family issues and immunizations and date nights and sibling roles and so on, but we all knew the only way to reach our children was to make them feel loved and make them feel safe, and that could only be done through positive means.

This, also, is not universally true. This is what happens when children are raised punitively and in a forced education mindset. Children who are allowed to exercise their autonomy will do a lot more than adults think.

If you have a child that has the capability to say "Can I have some milk?" and flat out refuses to learn to politely request milk and instead walks to the fridge and touches it and you open the fridge every time, you are enabling the behavior. Once you know the child has the capability to speak the words (that's important, to know the capability is there) the only way the child is going to move from walking to the fridge and touching it and get to the point where he or she asks the lunch lady for a carton of milk is when you start out by no longer responding to just a touch of the fridge door. That's not punitive, that's the same exact way that parents of neurotypical kids teach manners. You show the appropriate behavior, you model it a few times, and then you quit responding to your child demanding something and respond when the child asks nicely instead.

Nature enforces it too. Do you really think your baby will really go through all the trouble of learning to stand if everything she wants is 12 inches off the floor? Nope, what makes a kid want to get up and go is to get to things not in arm's reach. Nature causes discomfort (the kid can't reach it) and the kid in turn responds by learning and doing something new instead of staying on floor level.

Enabling is a very real phenomenon. You think something horrible will happen if your loved one is expected to do something that you think beyond them, so you make sure the loved one never has to face that. But that means the person will never have reason to grow, to learn something new. If you were, oh, hooked on drugs and someone made sure you never faced the consequences, would you stop? Why bother? If you were hurt and you had to work your butt off at PT to get better but your loved one arranges everything so that you don't have to gain use of the limb back, would you have reason to do the home exercises? Why bother? As a species we get complacent and don't push ourselves until there's a reason to push. That affects everyone, including disabled children.

I did not teach my child to talk. Her speech therapist did. Her speech therapist pulled off that miracle by creating situations where talking was far more efficient than not talking. She didn't take it to abusive extremes by any means, but there was definitely not a coddling of "I know what you mean so I'm going to do what you would be saying without you having to say it." Now? I can't get her to shut up, and many times I have to tell her I need silence....every 5 minutes because that's the longest she can go without saying something. I'd have never guessed she'd be this way when she was 4 and barely using more than a couple words a day and sign language and computer talkers had been a complete failure because it wasn't that she didn't want to talk, it was that she didn't want to communicate. It was achieved by meeting her needs but making it clear that using words would get those needs met more efficiently, along with several of her wants. Not punitive, not abusive, simply a mindset of "You have to do more than grunt and point if you want me to really get that for you."

 

[Willowy]

If you were, oh, hooked on drugs and someone made sure you never faced the consequences, would you stop?

I think there's a difference between cleaning up after someone so that they don't have to live with the consequences of their own choices, and coercing someone into acting "normal". If I've found a way to do something that works for me, I don't want anyone coercing me into doing it their way because they think it's better. But if, say, my way is messier than their way, I also don't expect them to clean that up for me. I made my choice and I like this one better. Deal with it.

I'll use eye contact as my example, since I hate that so much. I find eye contact to be painful and emotionally draining. I have to make a conscious effort to make eye contact and I don't enjoy it. If I'm making eye contact, that means I'm thinking about that and not about what you're saying. If I force myself to "act normal" and make eye contact on a regular basis, I'll just decide I don't have the spoons for it anymore and will avoid going out in public as much as I can. If I pull up my neurodiversity activist mindset and decide that if people don't like what my eyes do they can just jump in a lake, I'll actually go out and interact with more people and, ironically, probably make more natural eye contact because I'm not thinking about it.

If someone forced me to go out in public and put pressure on to "act normal" all the time, I'd probably lose it and end up in a mental hospital :/.

Some things work themselves out. I know a little girl who didn't talk until she was 4 1/2 or so. Her parents are low-income and didn't really think anything was wrong so they couldn't/didn't do anything about it (there are very limited resources in many rural areas). One day she decided to start talking and now you can't shut her up. I'm sure the public school system would have put her in speech therapy but she started talking before she started school so it wasn't anything they did. I wonder how often natural development variations are pathologized.

 

[LTS3]

Is that Angell Memorial? I have to check it out, if it is... but, who am I kidding?? I am broke, financially....sigh.. I just cannot adjust to this lifestyle.. man... it is killing me.. used to have a good income.. now, it is crap... sigh... venting..

artiemom Yes. I get the newsletter by email and there was a link there. It's not on the main web site anywhere (yet). The designs are pretty cute: snowbunny, dog bone snowflake, holiday tree and mouse, reindeer (or maybe a dog with antlers). I'm happy to buy a pack and send it to you. Just PM me.

If anyone else would like to buy holiday cards for a good cause, send me a PM for the pre-order link.

 

[arouetta]

I think there's a difference between cleaning up after someone so that they don't have to live with the consequences of their own choices, and coercing someone into acting "normal". If I've found a way to do something that works for me, I don't want anyone coercing me into doing it their way because they think it's better. But if, say, my way is messier than their way, I also don't expect them to clean that up for me. I made my choice and I like this one better. Deal with it.

I'm thinking of bowing out of this debate. You say forced to act normal. I point out that no, that's not what's happening, what is happening enabling a person to function in society in a way that offers a quality life. You say forced to act normal and punitive. I point out that no, I don't know and never knew of any parent that does that. You say again forced to act normal. I don't know how else I can possibly say that "acting normal" isn't the goal, has never been the goal and won't be the goal of intensive therapy to get a person to the best level of functioning that he or she is capable of reaching. The goal is to keep the kid from growing into an adult that simply can't function at all and is condemned to a mental hospital like they did decades ago and to allow the kid to grow into an adult that can make his or her own way into the world to the best that the disorder will allow, survive and thrive with minimal support needed, and enjoy the world in the process.

For whatever reason you are convinced that parents only want "acting normal" when I can tell you that out of the literally hundreds of parents I networked with when we had no clue what would help our children, and the thousands they in turn networked with, "acting normal" was rarely a stated goal and cause to get one more than one tongue-lashing. And since there was a definite possibility that a parent was also on the spectrum and undiagnosed, you can imagine how unabashed and direct some of those tongue-lashings were. "Act normal" is known to not be a reasonable goal and therefore was never a goal. Never, never, never by parents who grasped the enormity of the situation and the reality of the disorder. Never.

Some things work themselves out. I know a little girl who didn't talk until she was 4 1/2 or so. Her parents are low-income and didn't really think anything was wrong so they couldn't/didn't do anything about it (there are very limited resources in many rural areas). One day she decided to start talking and now you can't shut her up. I'm sure the public school system would have put her in speech therapy but she started talking before she started school so it wasn't anything they did. I wonder how often natural development variations are pathologized.

First of all, if she wasn't in school then the school was in violation of federal law and probably state law as well. For disabled children, schooling starts at age 3. Some states lower the age of public school for disabled kids to 2.

Second of all, I wonder if you have been talking to my mother as she kept telling me (from across the country) that there was nothing wrong with my daughter as I also didn't talk until nearly 5/avoided people/had rituals/etc and I was fine. The day that I laid into her about how no, I wasn't fine, I was mentally ill for darn near a decade without treatment while under her roof, she cried and didn't talk to me for weeks. Serious delays are a sign of something going on, even if the full symptoms don't express themselves for a while.....like my childhood onset bipolar disorder.

 

[Willowy]

Sorry, I didn't mean for it to be a debate, more of a conversation I guess. Just rambling. I'm glad to hear that modern treatment is better than it used to be, hopefully kids who receive that treatment can grow up happier than those in my dad's age range. I'm stubborn and distrusting and when I hear about some treatment protocols I can only think of how much I would have resented that. . .but I may be unusual. Or, hmm, I already know I'm unusual. Extra unusual? Haha.

First of all, if she wasn't in school then the school was in violation of federal law and probably state law as well. For disabled children, schooling starts at age 3.

As I said, the parents didn't think anything was wrong so they probably didn't contact the school. She's 14 now and seems pretty typical. . .did well, socially and academically, in elementary and middle schools. But she decided to homeschool for high school so who knows. I probably passed well at that age too, no way to know her internal/personal struggles. But she wears makeup and cares about clothes and boys and I never understood that much .

 

[arouetta]

Okay, yeah, deep breath on my end too.

I'm sure there were people who withdrew from the online community that had the goal of "normal". And I don't know about these days, I've only stuck my toes in the caregiver waters once in the last decade.

But what I do remember.....when they started talking some of those serious terms, you cry. And then you ask the doctor "How long will it take for her to be normal?" And the doctor says "First, this is lifelong. Take normal off the table. Your kid is never going to be normal. Never. What we are shooting for is an independent and quality life. We are shooting for your child to develop the skills to live on her own and we are shooting for her to have the full range of life as everyone else - family, job, fun stuff. Second, normal is a myth. The term is neurotypical. And your kid is never going to be neurotypical." And then you cry some more.

Then you talk to the therapist and she says the same thing. Independent, quality life. No such thing as normal and your kid will never be neurotypical. And then she hands you reading material, tells you where to get more, and tells you to attend the local support group. She also suggests seeing what is on AOL for online communities.

And then you read the material and you go to the local meetings and you find some email lists to get on. And the parents say the same thing. Independent, quality life, no such thing as normal, neurotypical. And you cry. And they cry with you, and they start telling you how they cope. (And then if you're me and you get the diagnosis of bipolar disorder in the same month as the PDD-NOS diagnosis and you learn both have a genetic component and many of your fellow parents have more than one kid on the spectrum, you get yourself sterilized by the end of the month to eliminate the chance of passing on more troublesome genes.)

And then the helpful treatment suggestions start. You hear about the MMR study that was just published. You hear how the doctor who published the study tied it to intestinal inflammation and four different parents have tried the GF diet to reduce inflammation and their kids act cured as long as they stay on that diet. And these three parents got even better results by going GFCF (no rice on top of no wheat). And someone had their kid tested for an unrelated condition and secretin was used for the testing and it cured him for a month and another injection kept it going another month, and next thing you know a $5 vial of secretin is now $1000 and a black market item with no doctor being sure the parents actually have secretin in the vial as everyone is scrambling for this rare resource. And some therapists believe in Greenspan's floor time while others believe in ABA but in all honesty no one knows if either works. And this and that and this and that. And shortly after each treatment suggestion the arguments start, with the faithful on one side looking for converts and the skeptics on the other side saying "Are you f****** kidding me????"

My daughter's psychiatrist said that we were basically throwing cooked spaghetti at a wall....throw as much as you can and hope something sticks. My daughter's developmental pediatrician said it was flavor of the month club, every month there was another cause and another cure and 90% of it was bogus. (I was asking him about the GFCF diet.)

And then there's the day when your child's speech therapist says that if you want your kid to show appropriate social behavior you have to model it. If you don't, she's definitely not going to pick it up. And you ask what's the issue and the therapist replies "Are you looking me in the eyes?" And you realize you're looking at the toy next to her. And she says that she's never once in the last few years seen you look someone in the eye, and you need to learn it if you want your daughter to learn it. And then you get a slight inkling of why people with autism hate eye contact when you actually feel physical pain in the back of your eyeballs when you look people in the eye. So you start off with the trick that you learned in Debate class back in high school, to look at the bridge of people's noses because it tricks them into thinking you are looking them in the eye, and you promise yourself to pass this trick along when your kid is old enough to understand.

Every time you start thinking the word "normal" the other parents get you straight again, there ain't no such thing and this is lifelong. Then your kid gets to a point where reasoning is possible, well, the reasoning a young child is capable of. So then you start talking about The Rules, since kids with autism are all about rules, and you answer the questions of "why?" with "People are supposed to be nice to each other, that is part of The Rules, and your part in being nice is occasionally giving up the lecture on (interest) and letting other people talk. Your part in being nice is also not bluntly saying 'That's stupid', and we will roleplay an appropriate response to use in such situations." And when they respond with "But that's not the truth!" you respond with "How would you feel if that was said to you?" and when the response is "I'd feel bad" then you explain that other people have feelings too and they would feel that way even if that's not the intent and that's why The Rules exist, so that people can be true to themselves but also be nice to others and help make someone feel good. Because while your kid has the social graces of a tree frog, your kid also has a good heart and just needs help learning to soften their statements. And you role play that, and other stuff, and pretty much any social situation you can think of so your kid is prepared when the situation comes up.

And then one day you realize that you haven't cried in a while, and you haven't thought of a cure in a while, and you are the one that is now telling a scared parent with a new diagnosis that normal is a setting on a dryer and this is a marathon, not a sprint, and that the goal is an independent, quality life.

And then your kid gets older and you start suffering from caregiver burnout so you aren't going gung ho about the new stuff coming out now. You are kinda at a point of sailing smoothly. Years from now you will kick yourself in the behind as you think of possibilities that were missed and how your kid survived childhood with a level of paranoia about bullies that equals your own...and they got you on medicine for your paranoia. But all the years have taken their toll and you just can't do more and more and more, especially when your kid throws the ADHD medicine out and decides to face school without that support and it shows in not a good way.

But your kid's ability to reason is farther along and you can discuss The Rules more in depth and how all social contact is a dance and the most important thing is a first impression. You can't undo a first impression, so look at it like playing Monopoly, X is the goal and Y behaviors during the first impression is a strategy to reach that goal. Then you discuss how people will often meet you halfway, so if you show interest in them, if you follow the social rules, they in turn will forgive your oddities and they will be there to show you when you need help that Mommy can't give. Every single time your kid mouths off or says something mean, you go through the whole "How would you feel if the situation were reversed?" since your kid still hasn't learned empathy unless walked through it, at which point she feels really bad that she hurt someone's feelings....and then three days later you are walking her through empathy again. (I wonder if imaging the tables turned will ever turn into an automatic reflex.) And with all your talk about life being like a board game where you have to decide your goal and plan a strategy to get to that goal and learn the social and communication rules enough to use those in your strategy to attain your goal, you start to wonder if you are providing a primer on how to be a sociopath. And then your kid sniffles when you walk her through empathy again or becomes outraged beyond belief over something that she read in the news that hurt someone else, and you are reassured that you don't have a sociopath on your hands and you talk more about goals and how a goal could be to be a good friend and the strategies and the rules of the game.

And then it all becomes automatic and you don't really think about how your way of communicating with your daughter and her way of communicating back isn't like everyone else. You don't. Because you got yourself sterilized so you have no neurotypical child to compare with.

And you get a crazy psych eval results one day that brings you back to ASD online communities and you see what survived those crazy first days to become the gold standard treatment and what is so long gone and discredited that the new parents have never even heard of them. And some guy sends you a PM about a new experimental therapy that actually has a sound theory behind it, but you go off on how you are done with experimental therapies forever. Your kid was an unwilling guinea pig simply because no one knew what worked but everyone knew how not even trying meant no progress, but they've got ABA now, and as far as you are concerned experimental is one of the worst cuss words on the planet.

And then one day you get into a big debate on a board about cats and you practice walking through empathy for once and you realize the person on the other end got a raw deal in her childhood, that her parents never quite got the lesson of "lifelong" and "independent, quality life is the goal" and then she meets you halfway, which makes you regret your fire in your earlier posts. And you apologize. And you think of all the automatic stuff you are doing with your daughter and that maybe you need to take out a page from way earlier in the history book and actually start talking about life like a board game again and walk through empathy as it applies to her job and role play appropriate responses, this time about more than social situations, this time about life skills as well.

W Willowy I'm sorry for not realizing right off that you didn't have the family meet you halfway. And I'm sorry for my attitude. And thank you for the chance to reflect and realize how I can still help my own daughter.

 

[Margret]

she communicated (to clarify, she never shut up)

Adults lie to kids all the time.

Yep.

Maybe it's genetic.

Very likely. Neither my mother nor I like mint, and it's quite obvious that I inherited the trait from her. It isn't a simple food preference; it's more like mint does the same things to our mouths as the after shave did to the face of the kid in "Home Alone." (I speak in the present tense, though my mother died a year and a half ago.)

Someone trying to force their idea of treatment on me, that's a removal of autonomy. But I cannot say the same about the little 7 year old girl in a full blown manic episode that was on the floor screaming one day at my daughter's elementary school. Giving her autonomy to manage her own illness and decide her own fate would be a barbaric cruelty. Nor can I say that someone saying my illness needs to be treated, period, is a removal of autonomy. Sometimes even adults can't see where they can push themselves further and a caregiver needs to give a direction and a bit of a kick in the rump to avoid enabling a symptom/behavior that could actually be managed better.

I've lost a very dear friend to bipolar disorder; he was on antidepressants for the lows, but they apparently got worse and his illness prevented him from even thinking to ask the doctor for a different or larger prescription. Unfortunately, he was able to think of suicide as a solution.

Some things work themselves out. I know a little girl who didn't talk until she was 4 1/2 or so. Her parents are low-income and didn't really think anything was wrong so they couldn't/didn't do anything about it (there are very limited resources in many rural areas). One day she decided to start talking and now you can't shut her up. I'm sure the public school system would have put her in speech therapy but she started talking before she started school so it wasn't anything they did. I wonder how often natural development variations are pathologized.

My brother the genius was late talking (I don't remember how late - sorry about that) but when he finally did talk he spoke in full sentences. Apparently he was simply unwilling to talk until he thought he could get it right.

Margret

 

[muffy]

MaMany1953:

My mother used to make me either green or black olive sandwiches with cream cheese. She used to work in a restaurant when she was young and that's where she learned to make them.

Muffy

 

[Willowy]

I'm sorry for not realizing right off that you didn't have the family meet you halfway.

I don't think it was family exactly. As I said, my parents aren't neurotypical either. And since we were overseas we weren't around extended family, thankfully (my grandparents would have been terrible for us). My dad is definitely Aspie and my mom has severe ADD or something that looks like it. My dad is anxious around kids (noise, unpredictability) plus he was in the Navy and was gone half the time anyway, so he wasn't involved in our daily lives. He was present (half the time) but not present, if you know what I mean. The detachment only an Aspie man can manage, I think. My mom did the best she could but was raised in an abusive family and never had any support for her issues, so she didn't know what to do most of the time. So if they didn't meet me halfway it was because they couldn't, and who can fault them for that?

She never tried to get any treatment, we just adapted our lives to our issues and muddled through. She didn't push things like eye contact, or trying to stop stimming. That was other people. Teachers and doctors and and "friends" and church ladies and random store clerks, etc. *To my mom* "why do you let him/her do that?" *to the child* "stop that, you're embarrassing your mother!" or "look me in the eye when you talk to me, sweetie". Ugh. I don't have too many complaints about my parents. A few, but who doesn't? I have a lot of complaints about everybody else, though, lol.

But, yes, I've never been on the parent's side of things. Thank you for explaining it so well.

And then you get a slight inkling of why people with autism hate eye contact when you actually feel physical pain in the back of your eyeballs when you look people in the eye.

YES. Seriously, that is so hard to explain to people. "How can it hurt physically, that's impossible?" WELL IT DOES.