How Are You 'Judged'?

[AnalogWife]

I hear SN/ASD parents say it all the time, how they are judged all the time. We got our dx in April and I still don't know if I know what this means. I'm wondering if I'm judged and don't detect it? What are the ways that SN parents/you are judged? TIA

[buttercup]

I think on occasion depending on how my children act, people develop a perception of my children and of my husband and I. But, you get use to it. You have to. I always use the opportunity to educate people about autism you make a comment or attempt to assist if there is an outburst.

[Kristine233]

I understand the feeling when my kiddo acts up in public. The "looks" people give because his behavior is a bit odd and they don't understand why I just can't stop him. That doesn't have anything to do with the diagnosis though because those people don't know the diagnosis.

Those who do know the diagnosis have been far more understanding and I haven't felt judgment from them.

[fairejour]

Nothing I do is right. No matter what choices we make, someone thinks we are wrong. Also, if my daughter isn't doing perfectly, if she is delayed in ANY way, no matter the cause, it "proves" that we have chosen wrong and our daughter is "failing" because of our decisions.

[AnalogWife]

Thank you, this clears some things up for me.

I think I understand the in-public thing. TARGET comes to mind, but I make such little eye contact with others as it's going on that I wouldn't notice many looks.

Originally Posted by fairejour

Nothing I do is right. No matter what choices we make, someone thinks we are wrong. Also, if my daughter isn't doing perfectly, if she is delayed in ANY way, no matter the cause, it "proves" that we have chosen wrong and our daughter is "failing" because of our decisions.

Who says these things to you??? What kind of choices are they judging here?

[Linda on the move]

Originally Posted by AnalogWife

Who says these things to you??? What kind of choices are they judging here?

one example -- several people have said that the problems my DD has are because we use to homeschool. She has asperger's and they feel her lack of ability (or even desire) to interact with peers was caused by homeschooling. Other people feel that her problems coping with the outside worlds are because she attends school. If only we would pull her out, she would be fine.

the who is non-professionals in our life -- neighbors, casual friends, extended family, etc.

[earthmama369]

I alternately get the impression that I'm either coddling ds or being too hard on him when we're out in public or in playgroup/class situations. I'm pretty open about the fact that he and I both have SPD and I'm pretty confident about how I handle his needs and behavior. I know his triggers, I know what he responds to, and I know which boundaries he needs. People are entitled to their own opinions, but they don't know my child the way I do, so I don't attach much weight to to their opinions in that kind of situation. Honestly, the same goes for friends and family. I know they mean well, and if something they say resonates, I'll take it into consideration, but in general I don't worry too much about their opinions because they don't live with my children 24-7, so what they see on a limited basis will resonate differently with them than it will with me, when I slot that one experience into the bigger picture.

[heatherdeg]

Originally Posted by fairejour

Nothing I do is right. No matter what choices we make, someone thinks we are wrong. Also, if my daughter isn't doing perfectly, if she is delayed in ANY way, no matter the cause, it "proves" that we have chosen wrong and our daughter is "failing" because of our decisions.

Originally Posted by Linda on the move

one example -- several people have said that the problems my DD has are because we use to homeschool. She has asperger's and they feel her lack of ability (or even desire) to interact with peers was caused by homeschooling. Other people feel that her problems coping with the outside worlds are because she attends school. If only we would pull her out, she would be fine.

the who is non-professionals in our life -- neighbors, casual friends, extended family, etc.

When we got a dx of "red flags for the autism spectrum" (by a leading researcher on infant detection of ASDs--and we SO WERE NOT looking for that, it's just where we landed) it was that we were being fleeced by drs. jumping on the bandwagon of the "diagnosis du jour" and if we believed them, then we were just unthinking idiots looking for attention because "he looks fine". Like the posters above, never from the professionals. Just the countless "friends", relatives, acquaintances and otherpeopleatbirthdayparties.

The list of what I'm doing wrong is END. LESS. My son is now 6-1/2yo (7yo in Jan.) and our journey started when he was 9mo. He's gone from not making any noise, eye contact or knowing you were in the room to being red-flagged for Asperger's with an ADHD dx and some gifts (specifically reading light years beyond his age). He WAS in daycare/preschool and we've homeschooled him since he was 4yo (kind of a misnomer--we do what he wants to do). He's very articulate, still makes almost no eye contact and is very polite. But I'm still doing everything wrong. When he was a baby and very delayed, dh's gma told me that ds was profoundly delayed because I nursed him past the age of 9mo and was giving him sour milk. Yes, seriously. Now, he speaks more maturely and can interact with adults more appropriately than most kids his age--so my homeschooling him is a problem because "he's weird" and "doesn't act like kids his age". Really? How many of them do you know outside of my kids (because generally, these are relatives that have zero exposure to kids ds' age).

[fairejour]

Originally Posted by AnalogWife

Thank you, this clears some things up for me.
...
Who says these things to you??? What kind of choices are they judging here?

My daughter is Deaf and there is a HUGE controversy about spoken language vs signed language. At first my daughter got ZERO benefit from hearing aids, so we vigorously pursued a signed language path, she was extremely involved in the Deaf community and her only language as American Sign Language (in spite of 4 years of speech therapy, she had no understandable spoken language skills at all). At age 5 she received a cochlear implant (which is more accepted than it has been in the past, but some Deaf community members still shun it) and got great benefit from it. We have now changed her to a spoken language program and she has gained 4 years worth of spoken language in less than 22 months. We continue to use ASL as needed and are active in the Deaf community but we believe we need to focus on spoken language right now and help her reach her potential in that area.

She is behind in language (obviously) and her reading is behind as well. Deaf people believe that she is going to fail using spoken language because deaf kids CAN'T be successful with spoken language alone and she is going to end up with linguistic and cognitive deficits because she was confined to a language that she did not have 100% access to. Oral advocates believe that we waited too long to push spoken language harder (even though we always spoke and did therapy) and she gravitated to ASL because it was "easier" for her. They believe that we missed her "window of opportunity" to learn fluent spoken language and that she will always function in English as a second language. They believe that she is doomed to never learn to read well because ASL and English are so different that she won't gain a reading level better than 4th grade.

Unfortunatly, they all have research to back them up, and on bad days, I believe both sides are right

[dakotablue]

Not a special needs parent, but I used to work with children on the spectrum. People felt the need to be more open with me since I wasn't a parent.

Annoying comment I got quite often was that my kids were just being brats. There was nothing wrong with them and many said they just needed a good spanking. This was usually from strangers in stores or other parents at the school.

That is so far from reality its ridiculous, but its how some people view these kids and parents absolutely feel (and are) judged. Also, I came across a few 'professionals' that blamed parents for issue the kids were having. Also, untrained staff had lots of opinions.

Sometimes they were right, but not really. I had a 7 year old not potty trained who could have be trained earlier, but instead the parents had focused on communication and put all of their energy into that. Seriously, I agree with that choice of priority.

And sometimes they were parents who did their best, but need to live and just can't deal with the tantrum for a red car issue.

Yeah, SNP are judged and sometimes more harshly than other parents, but defiantly more openly.

[Emmeline II]

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Edited by Emmeline II - 11/16/10 at 1:31pm

[HealthHomeHappy]

It's been easier since I now have a NT second child. I suspected my daughter had ASD at 12 months, but when they're that young it really *looks* to most people like I just didn't interact with her enough or coddled her too much. It's taken me about 4 years, but I'm pretty good at ignoring the judgement and objectively deciding if this is someone we want to be around anyway or not. When she was younger I wasn't so sure about myself and I took the judgments personally.

I get judged about everything too

Because she eats a special diet
Because there still are diets that I haven't tried

Because I 'give in' to SPD stuff
Because I discipline her for what she's capable of

Because people think that she doesn't have ASD and I'm using that as an excuse
Because people think that there's 'more' than ASD and I should look farther

Because I spend a disproportionate amount of the family's resources on one child
Because I let $ hold me back from doing some things that may help her

Because I try different therapies (OT/PT/ST/biomedical) and am changing things often
Because I try to stick some things out and see if we can push through a difficult place in her development and see if things improve

I guess it does just come down to what works for your family. I do different things at different times, based on what is working for her or what I can physically do. I stopped trying to explain things to people, I just say this is what we're doing right now. I do try to acknowledge what other people are saying, and tell them I'll keep it in mind for later but right now we're doing xyz.

[AnalogWife]

Thank you for these replies. I've just watched Autism: The Musical for the first time so it's more apparent to me the actual role I hold in the community/world as a parent of a child with special needs.

Unfortunatly, they all have research to back them up, and on bad days, I believe both sides are right

How could you not, you are definitely caught in the middle, I know it's not easy and I want to thank you for providing those details.

heatherdeg---you obviously handle the situation better than I ever would, I find in my life that my family is the most judgmental and it makes me bonkers.

dakota blue, thank you for your input, special thanks re: the language v. diaper story.

Yeah, SNP are judged and sometimes more harshly than other parents, but defiantly more openly.

That's a statement I'm not taking lightly, lots to think about tonight...thanks all.

[heatherdeg]

Originally Posted by AnalogWife

heatherdeg---you obviously handle the situation better than I ever would, I find in my life that my family is the most judgmental and it makes me bonkers.

Realize that we're 6 years into it, and it SUCKED, AND we have actually estranged ourselves from a SIGNIFICANT portion of both families because the issues with our son were seriously just the last straw. And we don't regret it. The ones we're still in contact with have this quiet self-righteousness that they were right because of how ds is today. Ya know, he's no miracle child or anything... we didn't work our arses off... I was just wrong and looking for attention. Two months ago we moved 800 miles away and really--I couldn't be happier.

But it was a living hell for too long when we were still involved in all of it. Holidays are different and that was a huge adjustment, but it works. You'll get there. Someone's either going to tick you off badly enough to cross the line, or do something that makes dealing with their nonsense well worth it. I hope those chips fall for you sooner rather than later.

[Fay]

Well, we don't have much contact with our extended family since our special needs child was born. Our kids have 13 aunts and uncles who do not call, write or visit. I have not seen my mother in over a year (but she's visiting next month, and I'm excited about that!).

But the judgement that hurts the most comes from other parents whom I meet in my local natural parenting groups. As soon as they find out about DS1's autism, they start questioning me...basically to find out what I did to cause his autism so that they can avoid doing it to their kids. I explain that autism has multiple etiologies, and some kids are born that way. That is not the answer they want to hear.

[NightOwlwithowlet]

DS was orginally diagnosed with PDD-NOS and that diagnosis has morphed over the years, at eight years old, he is now considered to have ADHD, mild SPD, and is gifted in some areas.

To sum it up; I'm responsible for his delays and any progress he has made is luck or he was misdiagnosed to being with.

[Kristine233]

Originally Posted by fairejour

My daughter is Deaf and there is a HUGE controversy about spoken language vs signed language. At first my daughter got ZERO benefit from hearing aids, so we vigorously pursued a signed language path, she was extremely involved in the Deaf community and her only language as American Sign Language (in spite of 4 years of speech therapy, she had no understandable spoken language skills at all). At age 5 she received a cochlear implant (which is more accepted than it has been in the past, but some Deaf community members still shun it) and got great benefit from it. We have now changed her to a spoken language program and she has gained 4 years worth of spoken language in less than 22 months. We continue to use ASL as needed and are active in the Deaf community but we believe we need to focus on spoken language right now and help her reach her potential in that area.(

I think this is amazing! Way to go!

Honestly, she is going to use what works for her and I think its great that you are giving her the resources to use both, she'll be ahead of the game in many instances because she will have both skills. Don't let people persuade you to stop doing what you are doing, you know your child best and your encouragement means more than any of their "research".

[Kristine233]

Oh, I will say we did have judgment from 1 person post-diagnosis, my MIL. She was convinced it was just lack of discipline and we were over reacting. I did damage to him with my lack of rules and follow through, lol.

When she moved near us I asked her if she was interested in helping out by being his PCA (because even if she thought I was BS, she was wonderful with him). The honeymoon period wore off and she was treated to his true side full-force. She apologized to me and became one of his greatest advocates and now informs others that Autism is a real thing and not the cause of lack of discipline.

[Linda on the move]

Originally Posted by Fay

But the judgement that hurts the most comes from other parents whom I meet in my local natural parenting groups. As soon as they find out about DS1's autism, they start questioning me...basically to find out what I did to cause his autism so that they can avoid doing it to their kids.

This really resonates with me. I HATE it when people try to make themselves feel safe by figuring out what I did/am doing wrong.

I also hate it when people imply that if we only did X, everything would be OK. My personal pet peeve is dietary. Have we tried being gluten free? Do we eat organic? Have we tried taking dairy out of her diet? What if she went vegan?

My DD has a ton of sensory issues that show up in her food preferences. She also has low muscle tone. We've tried different things, and none of them made any difference. They just made her miserable and angry, which didn't really help. She likes mac and cheese, and so I make her the healthiest mac and cheese and can and leave it at that.

And no matter what I do, my kid isn't going to look like an athlete. That's just not how she is.

[heatherdeg]

Originally Posted by NightOwlwithowlet

DS was orginally diagnosed with PDD-NOS and that diagnosis has morphed over the years, at eight years old, he is now considered to have ADHD, mild SPD, and is gifted in some areas.

To sum it up; I'm responsible for his delays and any progress he has made is luck or he was misdiagnosed to being with.

You live my life except mine is 6-1/2 and not SPD.