How Are You 'Judged'? - Page 2

[AnalogWife]

Originally Posted by Fay

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.

OUCH!

I think I might not be sensing a lot of judging because I don't socialize much and when I do, it's not often a topic, I rarely bring it up. I skirt questions about DS's conversational skills, I fluff out activities that we do. I confess that one draw to the preschool I chose was its less SN-sounding name. I find I mostly bring DS's dx up with someone I feel is truly "motherly"--like, someone who is motherly toward me, someone I can trust. OR with gay male friends, these are the people I converse with most naturally, and ones who also know social hardships, that sort of thing. They don't know a heck of a lot about ASD or raising kids, but they are the best listeners I've found in my life.

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.

There's a definite possibility that we'll someday try the GFDF route, but we're not yet there, and if we started today I'd know that DS would haaaate it, and what good is that? He eats healthy, as his mother I'm deciding that's good enough for now.

[Lisa1970]

I have not had issues a ton. It was more before diagnosis because it was not like I could tell people he has this issue. Since the diagnosis, I have not had troubles. Except last weekend when DS had a meltdown and a mom of a teen boy say it and told my teen son that I was a bad mother. But outside of that, I have not had much for issues.

[beachcomber]

Originally Posted by NightOwlwithowlet

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

Oh. My. Gawd. This is so totally the truth!

My autistic DD has made amazing progress this summer. But then, this is the first year we've had her in any kind of therapy. Dx'd in August and in OT, SLP and play therapies since April for which we paid out of pocket (I'm impatient and refused to wait until she got the "official" Dx).

ANYway, since her therapies started, we've had family members question her Autism Dx. Really, so the PHD, MD Ped and SLP ALL misread her during 3 days of intensive assessment?! Or I get told that I should have seen all this sooner and had her in therapy for her gross/fine motor delays and social problems YEARS before. Not like I didn't try, folks. I took her to our GP regularly but she was always just within the outside range of the milestone she was late on. Or she was just "shy" or "careful" or whatever the label was.

[NightOwlwithowlet]

I might have been a little harsh when I posted that. My harshest critic is myself. I feel somehow any issues my kid has must be my fault.

Now that DS is older and doing much better than any specialist or expert could have guessed, it's easy for people to forget how far he has come. Anyone who has met him in the last 2-3 years looks at us like we are crazy if we mention his former diagnosis. People who have known him all along tend to forget and assume he was misdiagnosed (unless they see old videos). Very occasionally someone like my mom, will remark what an amazing job we have all done, especially DS.

[heatherdeg]

Originally Posted by NightOwlwithowlet

Now that DS is older and doing much better than any specialist or expert could have guessed, it's easy for people to forget how far he has come. Anyone who has met him in the last 2-3 years looks at us like we are crazy if we mention his former diagnosis. People who have known him all along tend to forget and assume he was misdiagnosed (unless they see old videos). Very occasionally someone like my mom, will remark what an amazing job we have all done, especially DS.

This is our situation, too. In fact, there are about 2 people on the Earth (his first therapist who is now a family friend, and my dearest aunt who spent a LOT of time helping us) who truly remember how serious it was. And even then, my aunt missed quite a bit.

But people truly believe we're lying when we talk about where he was when they see him now. In their minds, that's simply not possible. You don't recover from that level of problem. As a result, it only comes up in the context of trying to help other parents whose kids are where ds WAS. Otherwise, I just look like a moron.

[RiverTam]

Originally Posted by heatherdeg

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.

Yep.

It goes the other way, too. My son was screened for an ASD and it was ruled out. He received a diagnosis of Mixed Expressive Receptive Language Disorder. We really struggled with his DX. A friend decided to rip into me because she decided that DS didn't have an ASD diagnosis because we are "afraid of the diagnosis."

I didn't talk to her for six months. I later found out that other friends agreed with her.

<sarcasm> Yep. I'm afraid of the diagnosis. That's why DS has seen our pediatrician, a psychologist, a developmental pediatrician, and two separate speech language pathologists. I'm totally sticking my head in the sand. That's me. I think I'll take him to some more professionals for assessment in order to avoid having him diagnosed. </sarcasm>

[AFWife]

Can I just give to all the mamas on this thread? Wow. I'm sitting here openmouthed at the ignorance that you all deal with all the time.

[LauraLoo]

Originally Posted by RiverTam

<sarcasm> Yep. I'm afraid of the diagnosis. That's why DS has seen our pediatrician, a psychologist, a developmental pediatrician, and two separate speech language pathologists. I'm totally sticking my head in the sand. That's me. I think I'll take him to some more professionals for assessment in order to avoid having him diagnosed. </sarcasm>

Oh wow! That really rings a bell with me. We went through *years* of working with ds who was speech delayed, had poor eye contact, SPD, and toe walking. And if you are reading this, you are probably saying he must be on the spectrum. Except that he wasn't. We had done all of the due dilligence -- consulting with our pediatrician, seeing a pediatric neurologist, and finally because the school wouldn't get off our backs about being in denial about the "real" problem with ds - that he was on the spectrum but we wouldn't believe it, we paid out of pocket for a pediatric neuropsych. eval. when ds was in K. The neuropsych. officially put it in writing that our ds was NOT on the spectrum. It was so bad with the school, that our pediatrician offered and went to our school meeting to represent us and make sure that the neuropsych's eval. was not misinterpreted in any way.

Yup -- I get the whole, you must be a parent in denial look and treatment. sigh.

BTW -- 2 years later we finally figured out what his overall issue was, and that was severe vision issues that required 9 months of vision therapy to correct. DS is a totally different kid today.

[heatherdeg]

Originally Posted by RiverTam

<sarcasm> Yep. I'm afraid of the diagnosis. That's why DS has seen our pediatrician, a psychologist, a developmental pediatrician, and two separate speech language pathologists. I'm totally sticking my head in the sand. That's me. I think I'll take him to some more professionals for assessment in order to avoid having him diagnosed. </sarcasm>

Yeah... that's MY OWN BROTHER. In his eyes, we were taking ds to so many professionals (even traveling from NJ to MD to go to Kennedy Krieger where they specialized in ALL types of disorders so we could get to people who knew what they were looking at) because we were desperate for someone to FIND something wrong with him and get a DX.



I pointed out to him that it was quite the opposite: that we kept looking for someone to say he was fine (or at least say WHAT was wrong with him exactly).

He had never considered that possibility.

Seriously???

[small_rant]Unfortunately, his wife couldn't be convinced of this possibility and only ever saw me as someone who could potentially be closer to my bro than her--so I had to go... and we are on "e-mail as needed for exchange of death information only" status with my bro. [/small_rant]

[~cassie]

I am judged in a different manner, I suppose. Not by his actions, but by mine. I find many people want to excuse my son's behavior, as if his speech delays impair him from being responsible for his actions. He is not impaired in any way, just has delayed speech, and I will get some of the nastiest looks when I dare to discipline my deaf child.

On another note, I did use to judge my sister. Her son is Bipolar and I have never been able to spend much time around him b/c of his actions, to others, to my children, to his parents, etc. If only my sister would discipline him when he did certain things. But then he got the diagnosis, and it explains a lot. I probably still judge my sister b/c she is opposite and me and doesn't discipline how she needs to, and instead uses the Bipolar disorder as an excuse most of the time. Maybe that is me judging again?

[AnalogWife]

How do the conversations come up?

My entire family lives in the same county and we see e/o fairly regularly, I have yet to tell them DS's dx (he's 3, he got the dx last April.) My father and stepmother have asked about him, and I turned into the iciest lizard-tongued bitch to ensure that they'd never ask again. How do you throw a diagnosis like this to people who just don't understand and will judge you? My father is one thing, I mean, it's his grandson and he probably deserves to know, but in the early days he pegged me as "overprotective" like it was a bad thing so pretty much, that was it. I felt as though I didn't get his 100 percent support and respect, and anything short of that wasn't worth our little family (me, ds, dh)'s trust in serious matters. He's the one who will say "oh, you don't believe that do you??" and I don't want to invite those kinds of trials into my life. He also comes with this horrible wife who I KNOW would jump all over ds's autism and claim it as her own, I can hear it now, her being some sort of autism expert with her sewing circle friends, her fellow churchgoers, her priest, telling them all about "my autistic grandson! my autistic grandson! autism! I'm an expert on autism! Because of my autistic grandson!" and lawd help me, I will never be the one to hand her that opportunity.

My bro and sil respect our privacy. Sil's a nurse and certainly suspects something is up, but also respects that I am a diligent mother and the fact that DS is in preschool answers everyone's questions about how much in denial I might be. Preschool = AnalogWife knows there's a problem and is dealing with it. Now lets all sit back and enjoy this child as he is without going into controversial business-talk.

My other bro, I don't see as much, and he has a way of pointing out aspects in my life that I try to pretend that no one sees ("Your new house looks like a doublewide! What?? Why are you hitting me?? It does! There's nothing wrong with doublewides!") and one day 9 mos before his dx DS moved in a funny way and bro says "Whoa! He's freaky!" and I wanted to die. He doesn't say it in a malicious way, he's just calling it as he sees it. He would accept the dx as matter-of-fact and carry on with his life without giving us much grief.

I suppose I do have a "judgment" story, I have a friend whom I only know online, but we "know" each other, you know how it is, lots of friendships have been formed on online communities...on FB one day she suggested a homeschool option because she became aware that I was sending DS to preschool rather than homeschooling like I always wanted to, so I finally private messaged her just to let her in that the choices I make these days are mostly because DS has Autism. She shoots back "boy, the way you say "he has autism" makes it sound like it's the end all/be all of existence," and that I didn't have to listen to doctors who don't know anything and that I never had to not homeschool my DS, yada. I was livid. Just more proof as to why I don't tell people who can't handle it.

[RiverTam]

<i>How do the conversations come up?
</i>

I have conversations with friends and family about what's going on in my life. DS1's dx was part of what is going on in my life.

If you don't have those conversations with friends and family, good for you.

I'm a little more extroverted, though, and that isn't going to work for me.

Plus, the speech issues were obvious to anyone who was around DS at home or school or on a social ocassion. It's not like it's a big secret. Most people know something is quirky about him. I can tell them the truth about what the deal is, or they can make up a story about what the deal is, but they know there is something going on.

[faithsstuff]

I just want to say that all of you mamas are wonderful. I am so sorry you have to deal with these situations and judgements while doing the best you can.

[Linda on the move]

I think it's very isolating to not to talk anyone about what is really going on in my life. I kept my DDs dx a secret for a long time, but in hindsight, that was part of my denial. I'm really open about it now, which is an issue in my marriage, because my Dh still has a lot of denial.

I find it hard to be friends with women who have similar aged kids who are neuro typical because we just don't have anything in common. My few friends either have a sn child, or they are older women whose kids are grown, or they never had kids.

We don't have much extended family so I'm no help on that. My DH is an immigrant so I never have to deal with in-laws, and my parents are on the other side of the country. My only sibling once said to my dd "I wish that you were different than you are, because it would be so much more fun for the rest of us" so I don't see her anymore. (This was because my extended family took a ski trip together and we didn't go because the whole thing would have been a nightmare for my DD)

[AnalogWife]

I don't consider myself to be in denial. I genuinely believe the point of view I have comes from an undiagnosed social disorder as a child, my intuition tells me that DS will be disserviced if his mother isn't prudent with information about him, that if it gets into the wrong hands it could cause him to hear or to believe untruths about himself, to get judged unfairly.

I just want to say that all of you mamas are wonderful. I am so sorry you have to deal with these situations and judgements while doing the best you can.

ITA, and thanks! I owe a lot to MDC, it was one tough response I once got in the Toddler Forum that justified my suspicions and directed me where to get help. I'm also grateful to the Autism pioneers before us, and to those who are vocal about their plights, I can't be one of them but I sure as heck read them and watch them. Good for me.