Annoying things people say about your ASD/ADHD dc's behavior...

[PeterPan]

Today was a new one that I'd like some help interpreting, and then you can throw out your own.  The person said they figured his problem was homeschooling and that's why they were against homeschooling (no shock, this happens) and THEN the kicker... They said Well if he's backward...  

 

Like REALLY???  Someone just looked at my gifted, loving, bright, shockingly talkative, generally nice unless he punches you or ignores you, adorable freckled 6 yo and said he was BACKWARD???  In this day and age?

 

So one, do other people on the planet still use such an archaic expression, and two does it even describe a certain category of people, and three have you ever had this happen to you?

 

Backward??  Just socially backward.  Not ASD or a social delay.  Nope, you're backward, like some pathetic plebe character that's the butt of jokes on tv or something.

 

I don't know.  My dc is the most FORWARD, in motion, going child I know.  How anyone can call him backward is beyond me.  Is backward sort of the like the R word and something that was casually used years ago that isn't appropriate now?  Or is it still appropriate to some categories of kids?  I assume it means shy, awkward, slightly dumb, socially inappropriate in an unintelligent sort of way...  My ds is inappropriate, but he's just going to lecture you like a professor or be in your face and give you The Finger.  He's never backward, awkward, gawky, etc.

[FairProspects]

I think in part what you are noticing is that you have crossed the threshold of age/behavior tolerance. People are generally tolerant of young children who act inappropriately because it is assumed they are still learning. People expect different behavior out of school age children and when they do not act appropriately in social situations, the differences are *obvious*. Now of course, some people just have not learned manners, and no backward is not the correct word, but I suspect this person was using that word to describe socially inappropriate behavior for age. You know the reason for the behavior and are working on it, but the rest of the world will not get it because they behavior *is* different and there is very little tolerance for difference of social behavior in children in many situations. Sometimes you have to be ok with that, and sometimes you might find it better to share that dc have special needs and the expectations should be adjusted for them. The years you are in were some of the hardest IMHO for those differences. I don't find the need to share to be an issue much anymore - partly because ds has matured & learned more appropriate social behaviors as he has experienced a wider variety of settings and partly because the older you get the more variance is tolerated in general. I'm sorry that happened to you!!

[OneStepAtATime]

Yeah, what FP said.   :grouphug:  :grouphug:  :grouphug:

 

We've had some moments.  Either because we homeschool or because the kids are dyslexic are usually the issues.  

 

One woman, in front of DD, went on and on about how cruel and misguided I was to homeschool my child and how would she ever learn to function in society? We were at a vet clinic and the woman wanted to know why DD wasn't in school.  DD smiled politely, explained she was homeschooling then proceeded to talk to the receptionist about our animal and the care that it would need.  She had just spent about half an hour taking a behind the scenes tour with the veterinarian because she wanted to learn and the veterinarian, in front of this woman, had encouraged DD to come back again for more behind the scenes lessons at our next vet appointment (we have a LOT of animals so they see us pretty often :) ).  Lady totally missed the great learning experience DD was getting, or how well she was handling talking to the receptionist or how she was handling this lady rudely and loudly talking about how awful homeschooling is.  All she saw was the poor deprived kid that wasn't getting any socialization.  Okaaaay....

 

We were at a church party a few weeks after the dyslexia diagnosis and the husband of DD's Sunday School teacher was asking about DD not reading from the bible in Sunday School anymore.  I explained that she was dyslexic, reading from the bible in front of the other kids was exceedingly stressful and it was also very counterproductive to the remediation we were starting.  DD wandered by at that point.  He asked, in front of her, if she could be "cured" or "fixed" or if she would always be incapable of learning.   :ohmy:  :thumbdown:

[Crimson Wife]

I'm dreading the day when my little one stops looking like a preschooler. She's small for her age and has a baby face (runs in the family) and so people tend to assume she's younger than her chronological age. I hate, hate, HATE when people ask me how old she is because I can't lie to them.

[PeterPan]

Yeah, what FP said.   :grouphug:  :grouphug:  :grouphug:

 

We've had some moments.  Either because we homeschool or because the kids are dyslexic are usually the issues.  

 

One woman, in front of DD, went on and on about how cruel and misguided I was to homeschool my child and how would she ever learn to function in society? We were at a vet clinic and the woman wanted to know why DD wasn't in school.  DD smiled politely, explained she was homeschooling then proceeded to talk to the receptionist about our animal and the care that it would need.  She had just spent about half an hour taking a behind the scenes tour with the veterinarian because she wanted to learn and the veterinarian, in front of this woman, had encouraged DD to come back again for more behind the scenes lessons at our next vet appointment (we have a LOT of animals so they see us pretty often :) ).  Lady totally missed the great learning experience DD was getting, or how well she was handling talking to the receptionist or how she was handling this lady rudely and loudly talking about how awful homeschooling is.  All she saw was the poor deprived kid that wasn't getting any socialization.  Okaaaay....

 

We were at a church party a few weeks after the dyslexia diagnosis and the husband of DD's Sunday School teacher was asking about DD not reading from the bible in Sunday School anymore.  I explained that she was dyslexic, reading from the bible in front of the other kids was exceedingly stressful and it was also very counterproductive to the remediation we were starting.  DD wandered by at that point.  He asked, in front of her, if she could be "cured" or "fixed" or if she would always be incapable of learning.   :ohmy:  :thumbdown:

:svengo: 

[PeterPan]

FP, I hadn't thought of it that way.  You've given me a lot to chew on.  As a weird sort of question, does a grade adjustment slow down some of that, or is it more just that people see a certain size/age of child and just have expectations?

 

Did you have a pat phrase or a way you handled it?  

[OneStepAtATime]

I'm not FP but I do think a grade adjustment can help a bit IF the grade comes up before the age question. There are always going to be people who act ignorantly, though, so I think we just have to accept that these situations will arise upon occasion.  

 

I feel sorry for kids that are big for their age, though.  (Not saying yours is).   If you have a child that is large for their age,  I think people are just going to have higher expectations in general and much earlier.   My cousin and I are only 6 weeks apart but he talked much, much later than I did.  He was also a lot bigger from birth.  He was pressured about the lack of speech from the time he was really small.  He was given a lot more expectations for behavior at an earlier age than I had, too.  Mostly, I think it was because of his size.

 

A dear friend of mine has twins.  Boy and girl.  The boy has been smaller than the girl for nearly all of their lives but the difference in size when they hit middle school was huge.  She reached 5'8" when he was still closer to 5'3".  They looked YEARS different in age.  People, including the rest of the family.  always treated the girl as if she was much older than the boy, including expectations for behavior and output.  It was actually more detrimental to the boy than the girl, IMHO, because people just seemed to assume he was not as capable compared to his sister.  The sister also ended up with a lot of pressure, though, since she was just assumed to be older and more developmentally advanced.

 

I do tend to think some people judge boys more negatively than girls for behavior that is not what they are expecting for a certain age range.  Boys tend to develop more slowly with regards to social skills and yet they get blamed for "bad" behavior quite a bit.  At least that was my observation when I was assisting in classrooms.  

[Crimson Wife]

FP, I hadn't thought of it that way.  You've given me a lot to chew on.  As a weird sort of question, does a grade adjustment slow down some of that, or is it more just that people see a certain size/age of child and just have expectations?

 

Both, I think. I much prefer getting asked what grade my youngest is in rather than her age, because people tend to react more positively to hearing "she's in kindergarten" to "she's 6" even though it shouldn't make a difference.

 

[OneStepAtATime]

Come to think of it, my nephew, who is actually two years older than DS, gets a lot of flack when people find out how old he really is.  He is small for his age and has a baby face and a bit of a lisp.  People usually assume DS is older.  They tend to cut nephew slack for some of his more immature reactions to things...until they find out what his real age is.  If age doesn't come up, behavior challenges usually aren't as much of an issue.

[kbutton]

My cousins are very tall for their age, and they do get flack for it. They were the kids who were the size of preschoolers at age 1, and it's enormously hard to look at them and not think they they are older or should behave differently even when you know (except when they are in a same-age group). 

 

I'm sorry. People like to find reasons to comment on odd behavior, and homeschooling, of course, explains it all, right? I've seen some horrible behavior from neurotypical people, including some who seem to think they are the pinnacle of manners and refinement. In fact, I've seen people use manners to snub people in a socially acceptable but overt way. I think that's backward.

[PeterPan]

Both, I think. I much prefer getting asked what grade my youngest is in rather than her age, because people tend to react more positively to hearing "she's in kindergarten" to "she's 6" even though it shouldn't make a difference.

 

Right now ds *blends* in with a K5 class socially but academically is crunchy.  If I call him 1st this coming year, he's academically not what you expect but seems to fit in socially, in general, en masse.  So I think over the long-haul we'll need a grade adjustment at some point to make the academics work out, but for *right now* he could be grouped for social by grade.  I've been thinking about it for things like sports where they want to know grade.  But if you say a dc is 1st grade in a social setting (at a party, whatever), that definitely communicates something about what kind of behavior they should be starting to have.  

 

I'm saying K5 was the great age.  It's this next step I'm not looking forward to.  I'm not sure it has a perfect solution and I sometimes get very protective.

[PeterPan]

My cousins are very tall for their age, and they do get flack for it. They were the kids who were the size of preschoolers at age 1, and it's enormously hard to look at them and not think they they are older or should behave differently even when you know (except when they are in a same-age group). 

 

I'm sorry. People like to find reasons to comment on odd behavior, and homeschooling, of course, explains it all, right? I've seen some horrible behavior from neurotypical people, including some who seem to think they are the pinnacle of manners and refinement. In fact, I've seen people use manners to snub people in a socially acceptable but overt way. I think that's backward.

So true!

[Desert Strawberry]

I have gotten a lot of "but he's smart ?!?"

Uh yeah. He has processing/developmental/speech problems (3 different kids). He's not retarded. 

With my first, I tried to explain. Now I just roll with it. If they notice my kid is different, I will explain. If not, whatever. I don't hear too much about it anymore.

[Desert Strawberry]

I have noticed that size is a factor. Oldest was Very Tall, spoke very well, and looked much older and more mature. People were a lot harder on him. He looked like a first grader when he was three.

Gem is little, talks baby talk, still wears pull ups and generally seems young. He's six. No one ever questions his babyish behaviors. He looks more like a three or four year old than a big six year old.

[OneStepAtATime]

I must admit I am sometimes guilty of this as well.   When DD was about 3 we were in a mommy and me type group.  One of the parents had an older daughter as well.  She was taller than her mother and looked to be about 16.  The little ones were sliding on a slide at the park.  She was playing with them and was doing a great job of keeping them all entertained.  The kids wanted her to slide down the slide with them.  She did.  She hit the bottom pretty hard and bruised her bottom a bit.  She started to cry.  She ran to her mother for comforting.   I was thinking she was behaving kind of babyish.  Turns out she was only 10.  She was just REALLY tall for her age.

[Targhee]

Not appropriate (the "backwards" comment).

 

However, people are terribly inappropriate.  We have come a long way as a society at recognizing physically handicapped individuals, accommodating, and including them in the main flow of social life.  We are no where near that for kids with mental/neurological issues.  Hopefully that day will come too.  

 

As far as comments, yes I have had many unkind or thoughtless comments - even from teachers.  The hard thing I think is just expectation - you see a kid, a certain size, with no obvious physical handicap, and then they do something socially atypical of a kid that size. Because you were expecting more mature/appropriate behavior than you witnessed then the child must be either willfully/morally inappropriate or "backwards."  That's where small size comes in handy.  However, even with small size (I have an 8 year old that looks about 5.5 or 6) if they have advanced speech for their age/size it is almost the same as being taller (they are seen as older, and held to the standard of an older kid).  My tiny 8 year old, who probably has the strongest social skills of my three with ADHD but is still behind nuero-typical kids, is verbose and makes sharp observations.  As soon as she opens her mouth people make assumptions about her total maturity (including social) and expect her to behave like a 10 or 12 year old  :glare:

 

I don't feel like I can change anyone else, and I don't have anything good to say (because I am afraid if I open my mouth the anger I feel will come out).  What I can do and have become so much more intentional about is being loving and accepting of who is in front of me, and teaching my children to do the same.

 

[MomatHWTK]

Ladies, I say this with love- get used to it.  You can be proactive.  You can surround yourself with supportive people and you must come up with appropriate non-emotional responses to people who say truly ignorant things in front of your child.  But, get used to it.  Your child is going to stand out.  Yes, you can hide behind age for awhile.  We did that too.  But in hindsight, it was kind of pointless.  There comes a time when that doesn't work, and then if you've been hiding you may find yourself unprepared. 

 

The fact is, if you are like us, you have a quirky child, or a disabled child, or a child to which the R word applies.  People are going to notice and wonder what is going on with that child.  Far better, IMO, that they see you being proactive and aware than assume that you are in denial or simply don't discipline your child.  FWIW, when my sister was growing up the R word was the medical term and I actually had to ask my child's doctor what the correct modern terminology was to describe her.  There was no insult to it, just fact.  I can't even remember the new speak, though out of courtesy to others I don't use the other phrasing.      I would guess someone using the term backward is trying to describe the situation in a polite way.  It is not an insult to describe what is true.  A child who doesn't get social cues and respond appropriate for their age is behind in social skills development, yes? 

 

Listen, I know, our children are wonderful, fascinating, brilliant, fabulous, wonderfully and fearfully made.  But, they are still quirky or shy, limited or "behind."  It is what it is, own it.  Love the child, have no embarassment.  Get past the feelings of disappointment and frustration for your child's sake.  Work every day to recognize that the perfectly justifiable protective instinct that you feel may translate to your child as embarrassment or disappointment.  Little eyes are watching and they care a lot more about what you think than about some stranger. 

 

So, to "backward" I would say:

 

Oh, that part of his condition. He doesn't always get social cues.  Plus, his little brain works so fast that he sometimes doesn't slow down to process what it going on right in front of him.  But he is so smart. I love listening to him talk about science or the Bible.  He does great as long as he talking to intelligent adults. 

 

To "never learn" I would say:

Of course she can learn.  Her brain doesn't process written words correctly.  My goodness, people were learning long before there were books and will be learning for many years to come using all kinds of formats.  Besides, you've seen her read, she is just uncomfortable doing it in a crowd.  So, unless her only future options are to grow up to be an "out loud reader" she'll be just fine. 

 

To the "not socialized" I would say: 

I'm not really too concerned.  I've seen her interact with others and she does just fine. Besides, if she spent all day with kids her own age she'd act just like them and that would drive me bonkers!  We're OK with her having a different path otherwise we never would have chosen to homeschool. 

 

 

Now if you are catching the trend here, IMO, information is power.  You don't have to be rude to make someone aware of their own ignorance.  ;)  Own your choices, own your child's uniqueness, and enter the world confident and proud that you are doing the right thing.  :grouphug:  Power to the mommies! 

 

ETA:  OhE, I reread your post about the group activities.  I will admit, those never worked for us.  As the kids got older they got more "kid-like" and the adults did not monitor the situation well.  Normal teasing, etc. that kids experiement with at that age was devastating for DS.  After a few tries, I quit trusting adults to handle the situation. I of course, spend my whole life on high alert for social interactions gone bad so it was stunning to me that the the adults in charge totally didn't see it or never did anything to intervene. 

 

I would try to stay with him to supervise, but found that my own anger and frustration would get the best of me.  I can't be the person I want to be around other children while also being responsible for protecting my own.  So we did opt out of social settings for awhile. I understand the desire to make sure your child gets what he needs.  I highly recommend working with trusted therapist to see that it happens. But also be aware that other kids are always going to do what you'd wish or expect. 

[Targhee]

Ladies, I say this with love- get used to it. You can be proactive. You can surround yourself with supportive people and you must come up with appropriate non-emotional responses to people who say truly ignorant things in front of your child. But, get used to it. Your child is going to stand out. Yes, you can hide behind age for awhile. We did that too. But in hindsight, it was kind of pointless. There comes a time when that doesn't work, and then if you've been hiding you may find yourself unprepared.

 

The fact is, if you are like us, you have a quirky child, or a disabled child, or a child to which the R word applies. People are going to notice and wonder what is going on with that child. Far better, IMO, that they see you being proactive and aware than assume that you are in denial or simply don't discipline your child. FWIW, when my sister was growing up the R word was the medical term and I actually had to ask my child's doctor what the correct modern terminology was to describe her. There was no insult to it, just fact. I can't even remember the new speak, though out of courtesy to others I don't use the other phrasing. I would guess someone using the term backward is trying to describe the situation in a polite way. It is not an insult to describe what is true. A child who doesn't get social cues and respond appropriate for their age is behind in social skills development, yes?

 

Listen, I know, our children are wonderful, fascinating, brilliant, fabulous, wonderfully and fearfully made. But, they are still quirky or shy, limited or "behind." It is what it is, own it. Love the child, have no embarassment. Get past the feelings of disappointment and frustration for your child's sake. Work every day to recognize that the perfectly justifiable protective instinct that you feel may translate to your child as embarrassment or disappointment. Little eyes are watching and they care a lot more about what you think than about some stranger.

 

So, to "backward" I would say:

 

Oh, that part of his condition. He doesn't always get social cues. Plus, his little brain works so fast that he sometimes doesn't slow down to process what it going on right in front of him. But he is so smart. I love listening to him talk about science or the Bible. He does great as long as he talking to intelligent adults.

 

To "never learn" I would say:

Of course she can learn. Her brain doesn't process written words correctly. My goodness, people were learning long before there were books and will be learning for many years to come using all kinds of formats. Besides, you've seen her read, she is just uncomfortable doing it in a crowd. So, unless her only future options are to grow up to be an "out loud reader" she'll be just fine.

 

To the "not socialized" I would say:

I'm not really too concerned. I've seen her interact with others and she does just fine. Besides, if she spent all day with kids her own age she'd act just like them and that would drive me bonkers! We're OK with her having a different path otherwise we never would have chosen to homeschool.

 

 

Now if you are catching the trend here, IMO, information is power. You don't have to be rude to make someone aware of their own ignorance. ;) Own your choices, own your child's uniqueness, and enter the world confident and proud that you are doing the right thing. :grouphug: Power to the mommies!

Thank you for a helpful reminder.

[Storygirl]

Elizabeth, I'm sorry she said that to you. I would have been livid.

[Crimson Wife]

One thing I've also noticed recently that makes me angry is that people treat DD significantly better if I apologize for her not responding appropriately to them talking to her if I blame the hearing impairment rather than the autism. It's like night and day- with the physical disability, I get sympathy but with the developmental disability, I often get treated like she's simply being a brat. She can't help the way her brain is wired any more than she can help how well her ears work.

 

After having spent a week at the parent-child workshop for the deaf & hard-of-hearing and seeing the (younger) neurotypical D/HoH kids, it became absolutely crystal clear to me that DD has special needs beyond just the hearing impairment. My DD actually had more speech than most of the other kids, but they were much more adept at using non-verbal communication both receptively and expressively. There was one little girl who had almost no speech but who was able to hold a non-verbal "conversation" with me better than my DD can using speech. It was a rather frustrating experience for me but valuable. If anyone in the future tries to claim it's all just the hearing loss, I can now say with certainty that it's not. Even if the doctors could fully restore her hearing tomorrow she'd still have SN's.

[Lecka]

I think it helps to have a secure, confident demeanor, too.  

 

I think when you are having an embarrased posture/demeanor, there are people who pick up on that and think they are going to "helpfully" get in your business.

 

Acting confident and somewhat nonchalant, moving on in the conversation as if it is a non-issue or just some obvious thing there is no need to discuss -- these are things that help me.  

 

But if anyone has read things where they say that kids who are more obviously impaired instead of just coming across as poorly behaved, get treated better?  I think we are in that category.

 

I worried a lot about what it would be like when my son got big enough that he would no longer pass for just a large toddler.  

 

And -- I think it was easier than it was before.

 

I think this is partly that I held my head up and decided that I was going to be one of those women who carried it off and had an obvious love, care, respect, and blase acceptance of their kids.  I see women like this and I totally check them out and view them as role models.  

 

I will also look back at people like "what is the problem?"  Not in a rude way, but like a "this look could stay neutral or turn rude" way (in my mind lol).  And I think they are looking to me, to see if I am going to look embarassed, or needy, or unconfident.  

 

And if I look like I have it under control and I am handling it -- then I think people accept that and I come across that way.  

 

But what is messed up is it takes time to develop that demeanor, so I think people get these comments when they have newly diagnosed kids and could really benefit from not having to deal with comments or looks!  I have heard this from a few other people.  

 

I have had some hard moments, but it is not something where I feel like "I hope nothing is said, I hope there is no look" before I go out.  And, I used to feel like that.  Now it is not something I am thinking about that much.

 

I also had it pointed out to me, to make sure I don't shut myself off from conversations that might turn out to be nice, just b/c I want to avoid conversations that might not be nice.  And -- that is something I try to think of, too.  B/c there are a lot of nice people and I prefer to focus on them and think of nice comments and gestures that people make, too.  (But again -- b/c it is obvious, so I get that.)  

 

[prairiewindmomma]

Social impairment comes in a variety of forms....including a lot of people lacking empathy and tact. We've heard all of what you heard and more.  ITA with the advice to kindly educate others to help shape their opinions.  IME, the older an adult is, the less understanding/awareness/empathy there is. 

[Lecka]

OMG the older adults who say "there were no children like this when their children were young!"  B/c they were not allowed in the same class as your kids?  B/c they were bussed to a different school?  B/c their parents hired a babysitter instead of taking them to church?  It is church where I hear this.

 

It makes me sad b/c maybe there were fewer kids, but it was not zero, and those kids were somewhere.  

 

I think if they thought about it, they would realize they did know about kids, but they didn't know them b/c they weren't at church or interacting with their kids at school.  But it does not occur to them.  

 

I think it is sad and thoughtless.  

 

I also think my son might not have been labelled "autism" in the past, I think (just a personal opinion) that he would have been labelled as MR in the past, and is part of the reason for intellectually disabled decreasing statistically and autism increasing statistically, that is thought to account for part of the rise in diagnosis rates for autism.  

 

I have never said anything back, b/c they are nice people and attempting to be well-meaning, and they succeed more and more -- they seem like they have all gotten through putting their foots in their mouths, and now it is old news and they can ask how school is going and stuff like that.  

 

But he is the "first" for them, and for younger people, he is not the "first," so it is not some "new, unusual" thing.  

 

I have also found that parents who have a child older than Kindergarten, even if younger kids are not that age, are a lot better, b/c they have been around and are used to their being a variety of kids around.

 

But those kids, in my town, are mostly not in daycare, and not in most pre-schools.  They are only at 3-4 pre-schools, and none of them are church pre-schools.  So until their kids are in public school, their kids have never been somewhere with a child with any kind of difference.  But then they are, and it is cool.

 

I didn't put this together until later, but I can remember some moms being very cool, and in retrospect they had an older child, and they would have made some comment about it.  They will have known an older child who had gone to my son's pre-school, even though when their own oldest child was in pre-school, they did not know anyone from that pre-school.  

 

 

[kbutton]

I think this is partly that I held my head up and decided that I was going to be one of those women who carried it off and had an obvious love, care, respect, and blase acceptance of their kids.  I see women like this and I totally check them out and view them as role models.  

 

I will also look back at people like "what is the problem?"  Not in a rude way, but like a "this look could stay neutral or turn rude" way (in my mind lol).  And I think they are looking to me, to see if I am going to look embarassed, or needy, or unconfident.  

 

And if I look like I have it under control and I am handling it -- then I think people accept that and I come across that way.  

 

But what is messed up is it takes time to develop that demeanor, so I think people get these comments when they have newly diagnosed kids and could really benefit from not having to deal with comments or looks!  I have heard this from a few other people.  

 

I hadn't really thought about it this way, but I've seen moms that are like you. I think I am getting there.

 

The hardest part was having an UNdiagnosed 2e kid, and then to get a spectrum diagnosis at age 9. Lots of years of people undermining my confidence. It was ugly. I was demoralized. I was often considered unfit or the source of the problem.

 

Anyway, I am more motivated to come across as confident--thanks.

[Arcadia]

As a weird sort of question, does a grade adjustment slow down some of that, or is it more just that people see a certain size/age of child and just have expectations?

:grouphug:

My kids are judged by size which means that people expect a lot more from my big for age DS10 than they do for my small for age DS9.

 

When they realize that DS10 is only 10 and not a 7th or 8th grader, they lower expectations to what they think is norm for a 10 year old boy.

 

People had made comments on my DS9 when he is behaving "immature". They think he is younger than he is. They think more socialization would solve it and tell me to sign him up for lots more extra curriculars since we homeschool.

[Targhee]

I hadn't really thought about it this way, but I've seen moms that are like you. I think I am getting there.

 

The hardest part was having an UNdiagnosed 2e kid, and then to get a spectrum diagnosis at age 9. Lots of years of people undermining my confidence. It was ugly. I was demoralized. I was often considered unfit or the source of the problem.

 

Anyway, I am more motivated to come across as confident--thanks.

When my first child was DX as 2e ADHD I was a hot mess of sad and overjoyed - for *years* I knew something was up, but was told "every kid does that" and "he seems perfectly fine to me" and "you just need to _____". I got this even from my DH, who was working 80 hr weeks and didn't really see it. I knew something was not going right, so if it wasn't the kids it must have been me, right? :=(: The DX was a validation to me of my parenting abilities. I'm still, three years later, working on building my confidence and overcoming self-doubt. One day I will walk tall, be be the direct, diffusive, in control mom.

[Lecka]

I think I do pretty good, but I go into a bit of an act sometimes, of talking in a nice way to my son but it is also "I am talking to him in a way that shows I am talking to him like I would a younger child."  A couple of times I have taken a couple of board books or lift-the-flap books, just b/c -- it will be easier that way.  If you take a 6-year-old who is good-looking and well-developed but you are carrying a board book or lift-the-flap book for him, nobody is going to think anything of it when he says or does something, b/c they will already have a clue.  

 

I think I hide behind that sometimes, but sometimes I just need to take my son somewhere with me, and it is an easy thing for me to do.  And they are books he likes, even though he likes other books that would look more age-appropriate, too.  I am maybe not doing that anymore, b/c now that I am more conscious, it seems like a crutch for me?  But I would still do it in a pinch, I think.  I have times I just want things to be easy and I don't feel like dealing with it, and I also can easily turn over flaps with him while I am doing something else at the same time, so it is just easy for me all-around.  

 

I still can think specifically of moms I want to be like, though.  Moms who own it and don't seem like they care at all!  Moms who are so warm and it is obvious they are so close to their kids.  Also moms who just seem like their kid is just their kid and they come across really unconcerned.  And moms who look happy and like they are just enjoying their kids.  

 

I see dads, too, where I think "wow, they look like they have such a close bond."  The kids will look so happy to be with their dads.  

[Lecka]

Separately I feel a burden, at times, to model for other people how my son is.  Is he someone who is warm and likes to laugh?  Well, I should be warm with him and notice funny things with him.  

 

Is he someone who is friendly? Then I should be friendly with him.

 

Is he someone who likes to notice things?  Then I should notice things with him.

 

B/c I do think people may have a lot of questions and then they are going to look at me and take cues from me.  

 

I think it is important for me especially with kids, b/c they will look for a minute -- it is important for me to be sending "this is a nice, fun kid" signals.  

 

I do not want to give off "this child is difficult" vibes, or "this child is not engaged" vibes, b/c that is not going to do anything for my son.  

 

But I also do not worry about it so much any more, b/c a) he is doing better, and b) I have found kids are better than I thought they would be.  

 

I used to worry about kids getting put off, but actually they are not put off if they know him.  If they are kids from his school, they are not going to quit saying hello to him even if they have greeted him and he has not answered back, b/c they know he has autism.  

 

I had a conversation with a little girl about this, that she started, that we randomly saw somewhere "he doesn't always say hi, he doesn't always play with me" etc, and her dad was *completely mortified,* and I had to be like "it's okay, she is a really nice kid, she is really nice to my son."  But it was killing him that his daughter was saying stuff like that, and I was just like "yeah, he doesn't always answer, but he is doing better and better, and I know how much he likes playing with you, maybe he will feel less shy in a minute," stuff.  He thought she was being really rude, b/c he didn't know my son was the boy in her class with autism.  I think he figured it out, if not his wife could tell him when he got home.  

 

And again -- I have read/heard this is easiest for kids like my son.  Kids who are perceived as "just rude or bossy" or "cries and gets upset over tiny things" do not get as good of a reception as my son, I am afraid.  It is not fair.  

 

Also I think it can help that he has siblings, so when they are there too, other kids can see that his siblings are not paying any attention to certain things.  

 

But I am feeling better about all of this, b/c he is a known quantity now.  I was a nervous wreck before he started Kindergarten.  He was "known" and loved at church and in my family.  Neighbors do not care for him much.  I really didn't know how school would go, and I was a massive nervous wreck.  

 

But I feel like he has got a decent reputation/impression now, that is okay and can only get better over time -- so I am not worried about it.

 

At this time last year, I was ill and would have stomach aches and trouble sleeping.   

[Lecka]

Oh, and I had a lot of self-doubt before my son was diagnosed, too.  I feel for you ladies who had to stay in that self-doubt place for so long.  It was not a good time, I had a lot of "I don't knows" and I felt like I was trying to do a good job but I didn't know if I was doing a good job or not.  And why are there people whose kids just walk along next to them?  How do they get them to do that?  I wanted to just ask people, "how do you get your kids to walk along next to you like that?"  But I knew, b/c my daughter walked along next to me, and I was not doing anything different with her.  I just thought maybe there was something I was doing wrong that it was so hard.  

 

It was not a good time.  

[MomatHWTK]

I totally understand all the fears and still have them. :grouphug:   I have to pep talk myself frequently.  With an older child, meltdowns become not only socially unacceptable, but may prompt someone to call the authorities.  So I guess I've reached a point where educating others is a necessity. 

[samba]

Hi OhE,

I had something reasonable to say in response to your post but then I read the other replies and saw this:

 

I have gotten a lot of "but he's smart ?!?"

Uh yeah. He has processing/developmental/speech problems (3 different kids). He's not retarded.

 

Now I have nothing helpful to say because I need to go process this response and the feeling behind it.  Now I'm livid.  So sorry to hijack...this is our reality.  I just can't believe it's here on a special needs board.

 

[OneStepAtATime]

I hadn't really thought about it this way, but I've seen moms that are like you. I think I am getting there.

 

The hardest part was having an UNdiagnosed 2e kid, and then to get a spectrum diagnosis at age 9. Lots of years of people undermining my confidence. It was ugly. I was demoralized. I was often considered unfit or the source of the problem.

 

Anyway, I am more motivated to come across as confident--thanks.

Yes this was a biggee for me. DD struggled so much with sequencing and a sense of the passage of time that even potty training was a challenge. Even DH felt it was my fault that our DD was still trying to potty train at 3 1/2 and everyone else's child seemed done by 2. It wasn't true but it seemed so and I got blamed. Then DD seemed really academically unready in 4k to move on to kinder and I got blamed again. We switched schools and repeated 4k. Better but still struggling. I got blamed again. I was not working with her enough. I was working with her too much. I picked a bad school. I was too indulgent so she had become mentslly lazy. I was too tough with her and it caused her to shut down. The list went on of all the unsolicited and conflicting advice I was getting. It caused me to second guess a lot of decisions and is one of the reasons I waited so long for evals.

[PeterPan]

Lecka, so am I taking your comments there to mean that it's actually *more* effective to use your own demeanor of calm acceptance (I'm on top of it, I know it's happening, why are you making a big deal of it) than it is even to use the labels?  I really hadn't thought of it that way, hmm.

 

 

Social impairment comes in a variety of forms....including a lot of people lacking empathy and tact. We've heard all of what you heard and more.  ITA with the advice to kindly educate others to help shape their opinions.  IME, the older an adult is, the less understanding/awareness/empathy there is. 

 

Yes, this is part of what happened.  

 

Lecka, yes, that's a good point that kids with differences were more hidden and now they're mainstreamed and integrated as much as possible.  Even gifted kids with differences were put in self-contained classrooms, simply because of a disability, while now they would be mainstreamed and supported. And you're right, I've gotten STELLAR support from younger moms.  It's just older people who want to label with archaic terms.  And maybe I'm just gonna have to be straight about it and not apologizing.  Because our road has been bumpy, I feel like I have to apologize.  So maybe the real response was "It's not backward; it's autism."  It's just not a label we've been using much, partly because we've had so many split opinions from psychs, partly because you don't meet him and go OH LOOK, there's the kid with autism.  But when people are really with him, after a while they're like what's up, why does he do this and this and this and this... and they start to get frustrated.  He just has this really astonishing verbal ability that seems to cover over things for a while.  It's only when people are with him more that they need an explanation.  So then they go through the little christian checklist: your kid is bad, you're a bad parent, or oh check you're not bad because you have a label, oh except if that label is one of the excluded labels, but autism, check, that's an ok label.  

 

I think that turned into personal rant, sorry.  I'm just saying it's very awkward to go out and use the autism label out of the blue when people don't SEE it happening.  Now when you wait and something HAPPENS and you go yes, he's been diagnosed, we know and we're working on it, THEN they go oh yeah, I can see it, wow I'm sorry.  But when it's that in-between land and he's just being really odd (like yesterday he was hyperfocused on his gun and walked away from the person who brought him a gift) well then they just go oh he's backward.  Grr.  

 

Fwiw, he's so fast and so stuck, like yesterday, I didn't call him back and make him spend more time on the gift.  It would have done no good because he was really fixated on trying out his new scope for his bbgun.  It's not like you could just pull him away from that without a meltdown.  So maybe Lecka will have super tips on that, lol.  When I CAN get him pulled back to pay attention, I do.  He did come over and thank the person (with prompting) and enjoy the gift a minute, but then it was zip zoom right back to his new scope and trying it out.  And when it's that fast and that odd, it raises eyebrows.  But it's not like I did NOTHING and didn't even TRY to have him respond to the person.  It just wasn't that calm, socially typical response a person expects.  He was right back to his thing.  And that's also being kiddish, of course, lol.  

 

Kbutton, yes, and I think it's, ironically enough, the christian community that is the most nasty about this!  Because of course if our kids don't behave right, it's OUR fault as parents.  It's all about us and were we controlling them enough and teaching them enough and forcing them enough and...  Status is having well-behaved kids who line up and can be taken into stores without breaking things.  Not, my child is loving and kind and learning gentleness, even if he is quite full of life.  Nope, in our circles the gold standard is quiet compliance.  And for your kid to diverge you have FAILED as a parent.

 

Arcadia, yup, that's the stunt the school tried to pull too, implying homeschooling caused autism symptoms in my kid.  I get that from relatives too.  Nevermind that I have a 16 yo that is clearly healthy socially, loving, giving, and outgoing.  And when I started putting him in a LOT of stuff at the Y and creating a LOT of extra chances for social learning, yes he has made progress.  But it has involved lots of prompting and removing prompts.  He's not shy, but he couldn't self-advocate, didn't know how to initiate, wasn't noticing people were talking to him, wasn't responding.  None of that is my FAULT or the fault of homeschooling.  I think it's really predicated on the tacit thought that if you would put your SN kid in the system, the SYSTEM would do better at raising your kid than you would.  And to the extent that we don't know all these categories of issues, that could be true!  But from the perspective that love covers it, that human dedication covers it, that CONNECTION to humans and the time spent pouring into someone matters, this can be good.  But when people come at it from the perspective, unspoken, that we are harming our kids by refusing to put them in the system that's a really hard one to beat.  The system does some things really well and some things not so well.  

 

Targhee, people do that "oh, everyone does that" mess even when you add ASD to your mix.  It's really astonishing, honestly.  Like it raises my eyebrows.  Like really, you really think I just told you my kid has an ASD label because he's totally in the realm of typical for every parameter???  Or, what's more fun is when the person's dc isn't diagnosed and they go Oh yeah, but that was just what my (insert name) did too...  And you just sit there chuckling, like yeah there's a REASON for that...  ;)

 

Lecka, on the question of owning it, I find it easy to own it when he's doing well.  It's when he's having a problem in a situation and is melting down or struggling with compliance that I have a problem.  Then you're frustrated and getting the looks and trying to calm him down and use methods.  But when he's calm, oh yeah we own it.  Thursday we walked around the big pool that they're going to try him in for the big kid swimming class, and you know those lifeguards had to be looking at us like WHY is that crazy woman touching the water with her kid while she's fully dressed and are they going to jump in and why are they walking around the pool so slowly... and we just owned it, like I knew why we were there and what we needed to do and we're owning it.  Because I agree, when we're confident and ok the people around us can be.  But in the meltdown moments, it doesn't feel so confident and ok.

 

Also, I like your sneaky clues idea.  That's interesting.  Have to chew on that in case that's ever useful.  I think there are sneaky clues though, when you think about it.  Like I just figured there would be this MAD RUSH for the changing rooms we use, because of course there would be boys needing to change.  Turns out there isn't, even though there are 40+ kids changing at the same time.  Apparently the other boys in his class use the boys' locker room, where we use the SN/handicapped/family changing rooms.  There are only 2, so I figured oh yeah all those 6-7 yo boys who can't go change themselves will be waiting in line.  (And if you know me, I HATE to wait, like I'm insane about it, like I'll show up 2 hours early so I don't have to wait.)   So I guess when you're taking your 6/7 yo boy into the SN changing room when all the other boys go to the boys' locker room and change themselves, that's a clue to people.  

 

Yes, I've been surprised at how much other kids at the Y will initiate play.  Everywhere we go, whether we're waiting for swim classes, at the b-ball gym just hanging after or early, at the outdoor pool, kids come up to him and initiate play.  It really blows my mind.  I didn't know kids were friendly like that.  And GIRLS come up too!  That totally cracks me up.  It's not even just boys.  I think they think he's cute, but maybe they're just really friendly.  But I'm saying almost every time we are just around, kids initiate something.  It's why I make so much effort to go, because he's getting a TON of interaction and learning experiences.  Sometimes I tell them he didn't notice you, try again, and then of course get him to notice their overtures.  Sometimes I prompt him.  Sometimes now a little nudge can get him to notice.  

 

I don't know about the needing to be the way I want them to see my kid thing, mercy.  Like if I'm already interacting with him in a certain way, then I don't *mind* if they see us interacting that way.  But we're separate individuals.  He is who he is.  I don't mind who he is, but I can't just turn on something.  I don't mind when people turn on their artificial interaction voices for kids, but I don't do it myself.  I know it's considered a socially typical thing to do.  When I worked in K5 I made the effort, but I was getting PAID to, mercy.  So I guess I'm not sure how to frame that that.  I guess you're saying you feel responsible for framing how people view your dc, and I figure he's a separate individual who is who he is.  Don't know on that one.  But maybe I just get there a different way?  I take toys, and now that I realize kids will initiate play I try to watch for their looks.  If I see them looking at the toys, I ask them if they are wanting to play too.  So it's just a different way of getting there.  But I can't make him come across as something he isn't, kwim?  I just try to mediate.  But I suppose what you're saying is the ABA people taught you a better way of approaching it?  

 

Yes, ds comes across as very controlling/bossy in play.  I haven't figured out yet what to do about it, and it's highly problematic.  I try to tone him down, but it's something where I need some better tools.  It's one of those problems that has gotten shoved to the back burner where you try to structure it out because you haven't got a better way, sigh.

 

Yes, I sleep ok, but I feel like it's constantly on my mind, much like the apraxia used to be.  It took us a number of years to get the apraxia to this stability place where I felt like ok, we have this under control, I don't have to be so constantly feeling like I'm not doing enough.  Now I'm back to the same place of constantly overwhelmed by here's another thing undone, another thing not done, another thing you didn't eval or look for.  It's making me go bananas. I'm just constantly on, thinking about it, feeling behind and like I'm not doing enough for him.  If he were in some official program, you'd just go oh, that's the program, I'm working their plan, and you'd stop.  (I think?)  But when it's all on you, it's always I didn't do enough, there's still more to do.

 

MomatHWTK, yes (see my eyebrows going up!), we had a meltdown that was so bad people were hearing it through masonry walls and commenting on it days later.  It was in a public place, and I really thought that was going to get some official call in or something.  (It was screaming, punching, etc. because we used a different bathroom.)  At that point, it was SO nice to be able to come out and say "He's been diagnosed with autism, we know, we're working on it."  Sigh.  Because yes when it's bad it's horrid.  But most of the time you say stuff and people are like "No way, can't be!"  That was why we got the extra evals with the autism expert, because we just felt like there was something more unexplained and that only calling it ADHD was not getting us there.  Even the ps psych said the same thing, that our case was very complex and that our explanations (from the first psych, who was hack and gave us a cursory, ridiculous explanation that didn't hold water) wasn't complete.  

 

In our culture, it would be easier right now to come out and say you're gay than to come out and say your kid has autism.  Seriously. And yet both are sort of coming out of the closet.  And I think we're just in the process of owning it and figuring out when to say it and when not to say it.  And with older people, the term doesn't even HELP because they don't know what it means.  Like they literally have no clue.  But you say it with younger parents and Lecka's right they just totally back off and get it.  

 

 

 

Hi OhE,

I had something reasonable to say in response to your post but then I read the other replies and saw this:

 

I have gotten a lot of "but he's smart ?!?"

Uh yeah. He has processing/developmental/speech problems (3 different kids). He's not retarded.

 

Now I have nothing helpful to say because I need to go process this response and the feeling behind it.  Now I'm livid.  So sorry to hijack...this is our reality.  I just can't believe it's here on a special needs board.

 

 

I just wanted to make sure you knew that someone was saying that an outsider did that to THEIR child.  It wasn't that they were saying that here on the boards about my child.  They were saying someone came at them like that, just like this person (IRL) said my kid was "backward" rather than acknowledging the proper medical terms like social delay and ASD.  And yes, it makes us angry, because these terms are perjorative and hurtful to kids who ALREADY HAVE ENOUGH HURT.  Or maybe our kids don't hurt?  I don't know, I just feel really protective on that, like you really better not hurt my kid.  And yet I suppose it will happen, and I suppose people will talk behind our kids' backs and spread things and say things and it will eventually come around to our kids.  So I suppose the real answer is to teach them resilience, their own value and how we measure their worth (as created individuals, because they are loved) rather than letting outside gossip define them.  

 

Oh OneStep, this is SO true!!  My head SWIRLS with the contradictions I've gotten over the years, with people saying I'm too permissive, people saying I'm too harsh, people saying I should intervene aggressively and early, people saying I should stop freaking out and just wait...  And I DO think a huge chunk of being OPEN to their arrows (which they are, poison arrows aimed at our hearts) is when we put down our shield of knowing we're doing what's right, that confidence that, to the best of our ability, we're pretty sure we know we're doing what is right, and our faith that, if we continue to do right by our kids, it will work out in the end.

 

 

 

[prairiewindmomma]

I think we live in a society where we need to name things. If someone is different, we feel the need to "name" that difference. I think that's partly why so many of us feel relief with diagnoses come--we can "name" the differences we are seeing between our child and other children.

 

I chose to share a label this week that we hadn't shared before. It was really interesting to watch the reaction of the people I shared it with. In some ways, it was like they were reviewing everything they knew about my kid through that lens, and then finally they could grant "acceptance" of my child. They could accept my kid's areas of "lack" because they could label them.  

 

There are times when my children's behavior is "socially inappropriate".  I think, for myself, I have just kind of had to blow up some of those rules and march on knowing that this was how God created my kids, and even if xyz never changes, they are perfectly beloved and I need to view my kids through that same lens.  So much of our focus can revolve around targeting behaviors and changing interactions and sometimes I wonder if we are doing these things because our child needs that or because we do.  

 

I think most kids are aware WAY before their parents think they are as to how people view them.  Think about babies---you know how some people are baby magnets---babies know they are welcome there and can feel safe and secure. Whether our kids have the ability to talk about acceptance or not, I really believe they are all getting vibes from others.  

[PeterPan]

I think we live in a society where we need to name things. If someone is different, we feel the need to "name" that difference. I think that's partly why so many of us feel relief with diagnoses come--we can "name" the differences we are seeing between our child and other children.

 

This is really profound.  Thank you.

[Crimson Wife]

 

Fwiw, he's so fast and so stuck, like yesterday, I didn't call him back and make him spend more time on the gift.  It would have done no good because he was really fixated on trying out his new scope for his bbgun.  It's not like you could just pull him away from that without a meltdown.

 

Trying to say this gently and to be helpful rather than criticizing you, but one of the things that was eye-opening when we started ABA was having the BCBA point out all the ways I was unintentionally reinforcing behaviors I wanted to stop. In an attempt to avoid meltdowns, I was doing things to reward DD for the nonfunctional or inappropriate behaviors.

 

In this situation, I would tell my DD that she needs to play with the new gift now and then the BB gun later. If she resisted, I'd set the timer on my phone for 5 minutes and that when the time was up, she could have the gun back. If she has a meltdown, so be it but she's not going to get the gun until she has calmed down and played with the new gift for 5 minutes.

 

It can be difficult during the "extinction burst" to put up with the meltdowns when you're stopping the unintentional reinforcement, but it's worth it in the long run. My DD has a LOT fewer tantrums and noncompliance than she did when we started ABA. I was just in the ABA team meeting and the BCBA was laughing about how DD's typical response now to being asked to do something non-preferred is a big dramatic sigh and muttering  "fine" like the instructor is putting some horrible burden on her.

 

[Wheres Toto]

When ds was younger I used to dread every time we were going to be out of the house around other people.  Especially homeschool events where we spent extended time around other kids.   I felt like I needed to be on top of him every second to address behaviors and help guide him.   I found homeschoolers to be extremely judgmental and some of the worst for comments.

 

He's much, MUCH better now but if you see him with other kids you can tell he's still socially awkward.  

[Lecka]

Skipping to the bottom a bit, but yes, I think my demeanor and attitude is number one.  

I think that in some situations, sharing a label can come across as defensive or as "I owe you an explanation."  Why do I feel I owe an explanation?  B/c I feel like "I am feeling like I should owe people an explanation."  

 

I have gotten parent training about how to stay calm, how to have a neutral facial expression.  I have had advice to think about something else (something relaxing) and then take a break later.  Or pick something and look at it.  

 

I also just went to a lecture -- and it was about how just as a person, you will have an emotional response, and so you should relax/de-stress later.  You can't keep from having an emotional response.  But you can have strategies to minimize how emotionally involved you get.  It is really, really easy to get emotionally involved and for that to make it more difficult for your child (and then that makes it more difficult on you).  

 

I also copy people that I think come across as classy, calm, warm, and just unconcerned and without a need to explain themselves.  

 

If there is a need to explain, then that is fine.  But there is not an onus or burden placed on me by society, that I have to go around explaining my son and my parenting techniques to random people.  

 

It's not that I avoid the diagnosis when it is going to be productive, useful, informational, etc, in ways that will benefit me or my son.  I just don't feel like "I had better explain he has autism" b/c -- if I care, then maybe I don't need to care so much.  Maybe I am better to come across like "I have got it under control" than "I have got to explain."  It depends on the situation and my mood.  But I think I am better off giving a non-verbal message than a verbal message in many, many cases.  The non-verbal message is so powerful.  

 

As far as when I am modeling how to treat my son ----- this is really just when he is looking disengaged.  When he looks disengaged ,it can be off-putting, and people may not know whether to try to engage him, or if they should leave him alone.  I think I can give a lot of clues that say "engage him" or "he is not as disengaged as he might look," and I think it is helpful, and I like to do it anyway.  

 

I have personally seen someone and thought, even though I know better, "he looks pretty disengaged," and then if I see his dad come in and give him a hug and start talking to him a warm way, then I will have a different view of that child.  And -- I pretty much totally know better on this now.  But not very long ago -- I did not know any better at all.  So I think it is just nice of me to do things, natural things I would do anyway, but things that also send out clues.  "I love my child, we are close, he is somebody who is giving me a lot of joy in my life," etc.  I think it is nice to have that view of a child who may be looking kind-of distressed/disengaged and know that is not the whole story for that child.  

 

But that is something I have struggled with some, b/c I have found myself wondering what kids are like when I have seen them look very disengaged, and I have wondered "is he always like that? is he even paying attention to what is going on around him?"  Which I am ashamed of now b/c I know better.  But I have wondered it from a place of not knowing.  

[samba]

I lost my very long reply.  Lucky for you guys ;)

 

Not to keep harping on it BUT...

 

I think I read the exchange correctly...an outsider said "he's smart?"  Board member replied (in her own head, I suppose) "Um, yeah, he's not retarded."

 

That is what I find so offensive.  This hierarchy of special needs.  Frankly, I'm sick of hearing how someone's 2e kids is smart.  WHO CARES?  I expect the outside world to be clueless, not fellow SN parents.

 

Prairiemomma said:

There are times when my children's behavior is "socially inappropriate".  I think, for myself, I have just kind of had to blow up some of those rules and march on knowing that this was how God created my kids, and even if xyz never changes, they are perfectly beloved and I need to view my kids through that same lens.  So much of our focus can revolve around targeting behaviors and changing interactions and sometimes I wonder if we are doing these things because our child needs that or because we do.  

 

Thank you, prairiemomma.  You said this perfectly!  :hurray: 

 

Most of the time I just behave with my child the way I want others to.  I pretty much never feel the need to explain anymore but my child is almost 14 and diagnosed at birth, so I've had a long time to get over looks, stares, rude comments and feeling embarrassed or awkward (but it still happens).

[Lecka]

Separately, I went to a parent support group meeting a while ago that has stayed with me.  There was a new, young mom with a newly diagnosed child, who was struggling with comments/looks when she went out.  The facilitator for the group said "oh, some people make note cards, that say their child has autism, and pass them out to people."  

 

But myself and two other people there, said we thought it was a bad idea, we would never do that.  

 

We all had strategies of "praise your kids in someone's face" (a mom who had someone made a comment about her son in line at a grocery store, and she responded by saying how proud she was of how he was waiting), look confident, ignore people, focus on your kids, focus on the moment you are having with your kids, etc.  

 

None of us were focusing on "how are we coming across" or "what explanation do we owe to random people."  

 

The young mom was also not confident in stepping in to guide her son in some ways that were appropriate, and that was also inviting a lot of comments.  She needed to step in and handle things more effectively.  Which is easier said than done, but we talked to her a lot about that, too.  And when I saw her again -- she said it was much better.  But her confidence had been down, and unfortunately that is a green light to some people -- they think they need to step in and give some advice, or step in and intervene in some way.  She was letting their be situations where she should have intervened proactively (and honestly -- in a really obvious way -- like she was letting her son bump into kids and not acknowledging it in any way, and it needed to be acknowledged.... I think she may have been letting her son cut other kids in line to avoid dealing with a tantrum).  But she was just really overwhelmed and did not know what to do, we have all been there.  

 

But I am not someone who thinks I should be handing out cards to people, and I have a high opinion of the other people at the meeting who agreed with me.  

 

The facilitator who brought it up, just said she had known other people who did it, and it worked out for them.

 

So I am not against it, at all, I can see it working for people and for situations.  

 

It is just not the direction I am going.  

 

I do think it is nice to have as an option, though, I think options are good!

[Lecka]

"Most of the time I just behave with my child the way I want others to."  

 

Yes, this.  

 

And sometimes this means I *don't* need to intervene, explain, step in, etc.  Sometimes my behavior is sending a message: "everything is cool, everything is fine."  Maybe it is not socially appropriate, but I can send a message "everything is okay."  I don't have to send a message "it is not okay and I am going to step in to intervene or explain."  Sometimes I need to do that, sometimes I don't.   

 

Sometimes it is sending a message "I love this kid, he is great," or "I am proud."    

 

 

 

[PeterPan]

Crimson, that makes sense, thank you.  We have an RTI eval scheduled soon.  I don't know that that's *exactly* the same thing (obviously it's not), but it's our first step toward something more in that community where the intervention is actually ASD-specific, rather than just being generically used by a variety of kids.  I'm sort of waiting to see if they laugh us out and say we don't need to be there.  :(

 

Anyways, I'll definitely think about that.  Runs in my mind Lecka also said something equally brilliant.  Lecka has been counseling me privately to work on behavior, and we HAVE been working on behavior, yes.  I think sometimes, well I don't know.  I think to me it's just how he is and I don't go through these little ticks of that's how he is but it's not the behavior we want so you better change it.  Sometimes that happens and sometimes it stays in the land of that's just how he is.  And that may be me.  So it's when someone ELSE notices it and comments on it that there's the oops, kwim?  

 

So if I think in terms of generically (is he doing what is socially expected), that's less than concrete than looking at it as preferred/non-preferred.  And you're right, what he WANTED to do was stay stuck on his thing and coming over wasn't PREFERRED.  And to a lot of people that just reads as disobedience.  But it's more like come into my world, hold on, it's only 2 minutes and the thing will be there when you go back to it.  And he can understand that now or at least try to comply with it.  We've been working on getting some behaviors that maybe he doesn't quite *understand* yet but he could *choose to comply* with.  We're getting some of that, but it's a work in progress.  So maybe stepping up our game on preferred vs. non-preferred is a good next step.  

 

Lecka, that made sense, thank you.  And you're right, if we slip and get out of control or over-emotional in it, it really does escalate. I appreciate your explanation of bridging how others see your dc and letting them see the side of him that you know is there.  That makes sense.  And that's a point that I'm going to have to chew on, that I don't OWE anyone an explanation.  I hadn't thought of it that way.  

 

 

 

 

[Lecka]

I believe there are times when you sabotage yourself and make yourself weaker by owing other people an explanation.  

 

There are times you do owe an explanation.  But most of the time -- nope, don't owe an explanation of any kind.  

 

You are sending a message just by feeling you need to explain.  

 

I have noticed -- people whose kids are older and have been diagnosed longer -- they are giving information out on their own terms and in their child's best interest and in a way that works for them.  

 

They are not giving out information b/c "oh no my child was really loud, what will people think, I had better explain."  

 

You do not need to explain.  You can just pull it off, and then voila, you have pulled it off.  

 

I am totally inspired by seeing what other people can pull off!  Why shouldn't I pull it off too?

 

Just put on your confident demeanor and own it!  

 

You are allowed to own the bad parts, too.  You do not have to feel like "oh wow I have got something to apologize for here."  

 

I mean -- sometimes you do need to explain/apologize.  

 

But you don't need to explain/apologize for your general existence and presence!  

 

You can be like "ha ha, sometimes he is loud, we don't have to worry about him getting lost, do we?"  I mean, it is an option.  You have a lot of options.  Being diagnosed is GOOD, but it doesn't mean you have to tell people.  I know it can seem like that -- but it is not.  It is just one of those things, at a certain point.  It is what it is.  You can make a joke if you want, it is up to you.  

[PeterPan]

I lost my very long reply.  Lucky for you guys ;)

 

Not to keep harping on it BUT...

 

I think I read the exchange correctly...an outsider said "he's smart?"  Board member replied (in her own head, I suppose) "Um, yeah, he's not retarded."

 

That is what I find so offensive.  This hierarchy of special needs.  Frankly, I'm sick of hearing how someone's 2e kids is smart.  WHO CARES?  I expect the outside world to be clueless, not fellow SN parents.

...

Most of the time I just behave with my child the way I want others to.  I pretty much never feel the need to explain anymore but my child is almost 14 and diagnosed at birth, so I've had a long time to get over looks, stares, rude comments and feeling embarrassed or awkward (but it still happens).

Samba, I've met you and know you're an amazing, dedicated, devoted mother who works hard for your kids.  I'm sorry this kind of pecking order of SN, where maybe some kids are better than others, some kids are worse than others, or that we just compare, has hurt you.  I never asked you what your ds' label is, because to me it didn't matter.  I don't know if the R word applies.  I have an adult cousin, now deceased, who was called R by us growing up because that was the term then.  Now, all these years later, my aunt (his mother) is VERY particular about that term and does NOT like it.  MANY people showed up for my cousin's funeral, and I think we can all say IQ does not equate to worth or value as a human.

 

I'll also just acknowledge that there isn't as much talk about ID on the boards here and that it is probably a lonely place with few answers.  I think though that loneliness and challenge is something ALL people here can identify with, no matter what the label.  And I agree it's important for us to be very careful.  I must have been very oblivious not to catch that a term was being used in an offensive way, and I apologize.  

 

I've been writing back channel, trying to get my own head straightened out, because I was comparing (oh, that bad word again) my ds with other kids with labels and asking why my dc was weaker on some things when his label wasn't as "severe" to me (that pecking order again).  I don't know if it's humanity or what, but I think we do that.  And it's a place of grave humility when you're able to own things exactly as they are and be very content.  I appreciated that when I met you, because it was very evident to me you had that or at least attempt to live it even if you don't always feel it.  

 

But yes, the comparison thing is rough.  It hurts others when it comes out, and it hurts ourselves by destroying our contentment.

 

 

[Crimson Wife]

That is what I find so offensive.  This hierarchy of special needs.  Frankly, I'm sick of hearing how someone's 2e kids is smart.  WHO CARES?  I expect the outside world to be clueless, not fellow SN parents.

 

I'm sure you didn't intend it to come across this way, but that's kind of mean. I'm sure it is challenging to have a child with ID, don't get me wrong. But if that's all that is going on with the child then it's a lot easier than having a child with behavior issues. A friend of mine has a daughter with Down Syndrome who is the sweetest, most compliant, eager-to-please little girl I've ever met. Yes, she has ID and will most likely wind up doing a life skills diploma for high school and some sort of menial job as an adult. But she's got the social interaction skills that will allow her to successfully hold a job so long as that job is within her cognitive capabilities.

 

Contrast that with a 2E child on the spectrum. One of 8FilltheHeart's adult children has Asperger's and has succeessfully completed high-level university science & math courses (can't remember if he earned a degree or not) but is really struggling with the transition to employment. This is the situation that those of us with young 2E kids worry about. The intellectual capability is, if anything, a drawback because it means the child is likely to get bored with a routine, menial job. But the social skills aren't there to handle the typical intellectually-stimulating job.

 

Until you've walked a mile in our shoes, don't judge us.

[MomatHWTK]

I have an older sibling who is "mildly mentally retarded" as they called it 40 years ago.  As I mentioned upthread, I think we are supposed to say "developmentally delayed" now? I'm not sure.  My sister uses the term herself and will tell you "I know what I am.  I'm fine just the way I am, if someone has a problem with that, that's their problem not mine!"  I have a son with an above average IQ but several other issues.  I don't distinguish the two so much to establish a pecking order but because it really is difficult to wrap one's mind around the 2e situation. 

 

I know when I emphasize how "smart" my child is, it is because that combination smart but unable to access that smartness is a totally different animal than what I had known with my sister.  It isn't better or worse than any other disability, it's just different.  For instance, my sister cannot do higher math.  It is just not going to happen.  So, a little consumer math, teacher her to use a calculator correctly, ask for help counting change, etc. were educational goals for her.  My 2e can do algebra in his head.  He could do great things in math, but not if his other issues prevent him from ever being willing to work any problem on paper or work more than 2-3 problems a day before having a meltdown.  I face a totally different set of educational goals and issues for him.  So of course I'm going to mention it, and of course I care.  If I can't get him past his issues, then I've not helped him reach his full potential.  Just as if my mother hadn't worked hard to show my sister how to use a checkbook, my sister wouldn't have reached the level of independence that she has. 

 

Also, I think the complaint about people not recognizing the child's abilities- whatever they are, is because it limits our children.  This applies to delayed children and 2es (I am so sorry I really don't know the correct terminology.)  Growing up, adults would often assume my sister couldn't do anything and step in right away to help.  This really frustrated my parents because she couldn't learn if she wasn't allowed to try. KWIM?  With my 2e, it is troublesome when people want to talk down to him because of his social behaviors.  IMO, the response of the 2e parent is to assumptions made, not any desire to establish a pecking order.  The parent isn't saying "Well, at least he's not X." They are genuinely saying, "This is a different condition, it's not X!" 

 

 

Finally, I think many of us are so focussed on our own child's needs that we do forget about anyone else.  It isn't intentionally being insensitive, but just the general incapacity to think about everyone and everything while facing our own issues.  I mean, I'm sometimes a little jealous of all of the folks whose kids can eat ice cream.  And don't get me started on how wonderful having a pet is for kids with ASD.  DS can't have a cat or a dog.  (We do have a rabbit now, but I was very nervous to try it.)  So we compare, we see where we are.  How else can we learn from one another?

 

Nonetheless, I am reminded to be more cautious with my language.  When I talk to my DS about his condition, I do compare him to his aunt and explain the areas where they are similar and different; not better or worse, just different.

 

 

On a totally separate note, way before we were dealing with the ASD, etc. DS had food allergies so severe that he had to be on a specialized forumula-only diet until age 3.  He also was and still is deathly allergic to dogs (among other things).  I was a MESS.  The whole world was my enemy and I spent a substantial portion of my time outraged by all the dogs, peanuts, dairy... people brought everywhere.  I didn't convey my message well at all.  And the responses- so many people from homeschoolers to churchgoers pretty much thought we should just stay home rather than ask them to change their precious menus.  Yeah, I still have issues.  So I have learned from the school of life- the outrage just wears me out and doesn't change the other person.  We are 13 years into dealing with DS' allergies and several years into dealing with his other issues (which I also didn't handle well at the beginning).  I have cried in public more than once.  So when I say "get used to it" I understand that it will take time.  I think Lecka has explained well what is involved in "getting used to it."  Don't sweat the small stuff.  Give yourself time to get over the big stuff.  Try to give people the benefit of the doubt when you aren't sure of their intention and forgive them when you are sure their intentions aren't the best. 

 

Caring for our children takes way too much brain power to waste any on people who really aren't important to your life. KWIM?  And if the important people don't behave, avoid them until they do. ;)

[samba]

Crimson,

My longer reply that got deleted had a lot of disclaimers about what I meant...

 

1. My child has an ID but that's not all.  BUT it's the only one people can see and they attribute every thing he does, doesn't do, can and can't do to his one visible disability...even professionals.

 

2.  I do not fault people who bring up the intelligence of their 2e child with respect to looking for appropriate services, accommodations, advice.  I know it's a complicated world to navigate without one clear path.  But that is true of all of our children.  One is not easier or better or more manageable.  My frustration is with people who have this need to make sure the world knows that their kid is smart, above all else...as if it IS better.

 

So, I apologize if I came across as insensitve.  I have a fairly thick skin and am not easily offended.  I thought my meaning would translate.  It did not.  I am feeling especially frustrated right now.  A new special needs coop is starting within our normal coop.  I thought it would be a perfect fit for my ds.  He was turned away because he has too many SNs.  Ouch. 

 

I really didn't want OhE's op to become all about me.  I rarely vent and rarely visit the board anymore and I chose an inappropriate time to do both.  Sorry.

[PeterPan]

... I am feeling especially frustrated right now.  A new special needs coop is starting within our normal coop.  I thought it would be a perfect fit for my ds.  He was turned away because he has too many SNs.  Ouch. 

 

Oh my, that hurts!  I'm starting to realize how fringe my child can be too, even among kids with similar labels, and that's sort of isolating, like you thought you were on an island WITH someone and now you're not.  I just can't believe they're not going to try to make it work though.  That's just whack.  Like REALLY??  I've met your boy.  He can go into a situation and behavior properly.  Nuts, he's way ahead of my ds on that, lol.  So that is just whack and discriminatory.  Sigh.  

 

But you know what I think?  When they leave us out, THEY lose.  I hope you can renew your courage and find new, special things to do this year to replace the lost opportunity and connections you thought you were going to have.  Is there a developmental disabilities board or some vocational training or something like that you could connect to to get new opportunities?  

 

And mercy, don't apologize for participating!  I opened the thread up.  Divergent is good.  I more wanted to chat than anything.  I like hearing about your experiences.   :grouphug: 

[PeterPan]

I don't want it to seem like I'm just picking sides or anything, but yes, Crimson, I do identify with what you're saying.  The confusion of this, how someone can be SO functional and yet so NOT functional at the same time, is very scary.  Our society has paths for people and plans and resources and they work especially well if you fit the expected or typical criteria.  But once you say my ds is gifted but he's just as likely to come up and lick you or punch you as act appropriately and today he has a path and there's no getting him off it (because he told us his plan for the day and that IS The Plan for the day) well it's just mind-boggling.  And I think it's our fear because of course we're ALL worried about our kids and wondering how it will turn out.  Nuts, even moms with kids with no labels do this to a degree.  

 

I worry way too much.  Not even so much as an esoteric worry, because I DO think things will work out well in the long run and be ok.  I believe that, or at least I choose to believe that.  But I feel overwhelmed with all the things to do, the contradictory advice, the new problems every time you turn around, the things you could try, the problems, the realizations of things you're not doing.  And I think the 2E (or I say 4E for my ds because I stopped counting and I like the sound of 4E) makes it more complex or more guilt-tripping because you're always pounding against this realization that what you did was never enough, that it will never BE enough, that he never WILL attain what he could have been or should have been, that no matter how hard you work on any day it wasn't good enough.  And of all the strains and common experiences, I can acknowledge that might be a difference.  There's an extra guilt or sorrow or grief there.  

 

Yes, I think grief.  So then maybe that's the healing for the 4E, looking at the peace other people have found (with however many Es they are dealing with), and saying wow, maybe it's time I got to that place of peace too.  I don't think *I'm* there yet, that's for sure, that place where I say this is what we're doing and it's good enough.  

 

Just to take it around full circle, I think when we acknowledge our grief and fears and work through them, we can identify with other people who have those grief and fears, whether it's from 1E or 7E or some totally OTHER thing.  It's a process common to humanity.

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

 

Ran out of likes.

 

Parenting is tough.  It is tough because we care.  We care deeply.  And there is no one right way that makes the path a perfect path that smooths everything out.  So it becomes very hard to navigate and there are all different kinds of hard, even within the same family, even within the same kid.  We just have to keep loving them, keep taking care of ourselves, and continue the journey.

 

Best wishes everyone.