Mindset against help for special needs

[Kitty]

Labels do help. Mine are ADHD, anxiety, and Tourette Syndrome. People like labels, and I'm not just talking about doctors. I'm especially happy with my Tourettes label, it helps people understand why my shoulder and head jerk to the left sometimes for no apparent reason. I don't feel damaged by my labels, and neither do my parents. The labels get me the help I need. I don't see them as any different than my asthma diagnosis.

Also, I really hate it when my issues are cute and quirky when people are happy with me, but a character flaw when they're not. That's the damaging part, I think, and just one more reason for me to hate Jenny McCarthy. Autism did not take away her son. ADHD did not take away Kitty, and neither did Tourette Syndrome.

An attitude I find especially damaging is the identity as mothers that women must have. A woman's identity is all about her kid status. If a woman doesn't have kids, nothing she says regarding kids matters (and indeed, nothing else she does matters either, because she isn't a Mommeigh). Before the pee stick even dries, a woman becomes her kids. She must live vicariously through her kids, because it's her kids who reflect her. If they're well-behaved, making good grades, etc., then she's a good mom. If something's wrong, even if it's not her fault, she's a bad mom. A lot of mothers are people who can't take criticism, so they delay intervention because they're so afraid of it, and that's definitely Chavs's problem. She doesn't want to hear that she's doing something wrong, even if that's not the case. And that's the case with AD's mom too.

^Another reason I don't want kids.

[Rosa]

I think some people just have a gigantic mental block against meds, for whatever reason. Also, some people think that if their kids are "labeled" (ie, diagnosed) they'll face more difficulty than if they just ignore the problem.

Yes! I have met more than one person who feels like the answer is "more spankings!" but medication is wrong and somehow cheats the child out of experiencing the world (including the more spankings, I guess.)

And even more parents who are all "well I'll try 85 intrusive things that require me to totally control everything my child touches, wears, hears, or sees, because I don't want him to be stigmatized by being on a medication." Like being the kid who can't wear synthetics (because Mom thinks static electricity causes depression) or eat anything not mom-approved because it might have wheat or red dye, isn't at ALL stigmatizing.

[jenny_islander]

This is why I think homeschoolers need much stricter oversight. I know some who do a fabulous job, but it is just too easy for a kid to fall through the cracks. (If I knew a 12 yo who couldn't read I'd call CPS and report the parents for educational neglect.) I understand milestones vary, but if my child could not read by 8 she'd be having a full physical, psychological and educational evaluation. I know there are other ways to teach and learn but reading is so essential I cannot understand why her parents didn't make an early effort to help her. What is worse a label or wasting years she could have been reading? So much of my own body of knowledge is there because I loved reading.

I think my local HS system is just about ideal. My daughter is registered through the school district and eligible for all school programs, but she learns at home. I have an account in her name with the same amount of money the school would spend on her if she were going to class. I decide how to spend it--anything except religious material is covered, with some additional restrictions (hip hop class is covered as her PE credit but I have to buy her dance shoes, for example). Any non-consumable items, such as the pottery wheel I bought with school funds, become property of the school when I no longer have a student at home. The school maintains a free warehouse with remaindered schoolbooks, extra art supplies, etc., that I can pick up for free, and also microscopes, etc., that I can check out. And if she turned out to have her father's dyslexia, I would have been able to bring her in for help.

All I have to do is make sure she can pass the same standardized tests as anyone else, starting in third grade. I explain what subjects I plan to teach and what materials I will use at the beginning of the year and submit 3 progress reports. Everything else is up to me.

[Mama Mia]

In fairness to the parent who was the topic of the original thread... I don't think it is abnormal to have an initial gut wrenching reaction when you are first told that your child might have life-altering "issues".

As a parent, I think you generally go along and deal with it and work through it.. but it is hard emotionally when it is first pointed out that there might be a problem.

As a parent I think you generally start with the mind set that you want the world to be easy for your darling, gorgeous, brilliant, sweet, funny baby -- and it can be very heart wrenching when challenges occur. An initial reaction of denial or anger or sadness isn't unusual.

[Austin]

In fairness to the parent who was the topic of the original thread... I don't think it is abnormal to have an initial gut wrenching reaction when you are first told that your child might have life-altering "issues".

As a parent, I think you generally go along and deal with it and work through it.. but it is hard emotionally when it is first pointed out that there might be a problem.

As a parent I think you generally start with the mind set that you want the world to be easy for your darling, gorgeous, brilliant, sweet, funny baby -- and it can be very heart wrenching when challenges occur. An initial reaction of denial or anger or sadness isn't unusual.

Thanks for filling us in on that.

[bananacat]

I think that even though it's generally accepted that childhood mental and developmental problems are biological, a lot of people still have that feeling that it's at least partly due to bad or distant parenting. I can understand why people like to believe that because it's comforting to believe that if you just love and hug and breastfeed and cosleep with your kid enough, they won't have any problems. Unfortunately, that mindset can also cause a lot of unnecessary guilt when things don't turn out perfectly. The mother probably feels that at some level this is her fault, but it really isn't.

[Rosa]

As to some of these parents, fundie or not, they somehow believe that the issue is about them.

I'll tell you, the diagnosis is still flimsy and varied, but as a person with an ADHD label with a partner who has no label but has every. single. trait. that has pointed toward "autism spectrum" in my son, in a lot of cases it *is* about us. There is not one behavior that kid has that neither of us has.

I'm okay with it, I have had a long time with my label & I'm okay with it (and have found it helpful in a lot of situations - tools for adults with ADHD have helped me an awful lot.).

But my partner grew up in a family where nothing was labeled or diagnosed. Everything was fine, fine, fine, fine. Bipolar? TOTALLY NORMAL SHUTUP. Some sort of crippling social anxiety/anxiety that causes angry outbursts when things go wrong? WHAT THAT'S JUST HOW SOME PEOPLE ARE. Total inability to function socially? Well some kids are just weird. Schizophrenia? Oh he was dropped on his head as a baby, it's a shame, too much booze.

Some of the adults in his family are now medicated and much, much better than before. But his emotional response to any sort of talk of mental illness was to just shut down totally. I seriously watched him say to a professional who was evaluating our son "No there's no mental illness in my family." I corrected him and said, wait, what about your bipolar parent? "Oh yeah, one of my parents is bipolar." "So how did that affect you growing up?" "Not at all, everything was fine, totally normal. I mean, sometimes she slept for a few weeks and we didnt' see her at all, and when she is down she calls me crying and begging me to still love her, but it has no effect on me."

So hearing that some things he does himself are indicative of high-functioning autism? Freaks him out a LOT. And then he feels like a failure as a parent for not fixing the kid. And then he feels bad for thinking about himself. It's just a terrible thing, and he has had to work through it himself because (of course) he'd rather die than see a therapist.

I'm just glad we started the process in kindergarten and not when the kid was in high school.

[bananacat]

So hearing that some things he does himself are indicative of high-functioning autism? Freaks him out a LOT. And then he feels like a failure as a parent for not fixing the kid. And then he feels bad for thinking about himself. It's just a terrible thing, and he has had to work through it himself because (of course) he'd rather die than see a therapist.

Does he have any family of OCD? This sounds like the type of thought process I go through a lot and it's because of my OCD. And it's certainly possible to have both autism and OCD. It is a shame that he won't see a therapist though, because they can make such a difference.

[emmiedahl]

I don't know this for a fact, Rosa, but I imagine that OCD can cause some autism spectrum-like behaviors. Just speaking from personal experience. I know I shut down completely when I am in obsessive mode.

[browncoatslytherin]

i agree, labels can definitely help teachers/doctors/etc. so they can know where to begin to help you. as many of you know, i have mental issues, but this time i'll use a non-mental illness for my illustration.

i had issues with math my whole life, but since i went to a christian school that wasn't very good [not to say that all christian schools aren't good, just the one i went to] my teacher just thought i didn't try hard enough. later, when i was in college, i was officially diagnosed with dyscalculia, and since i finally had a name for all my troubles, i was able to get the help i needed. though, you know, i haven't heard much talk about dyscalculia, i think because not many people are aware of it. perhaps i should start a "ask a..." thread pertaining to this...

[Rosa]

Thanks, you guys. There's a person in his family I would totally hang and OCD label on, or social anxiety, or SOMEthing. But he's not the designated crazy person (that's the one with bipolar) so the family story is his behavior is totally normal so shhh. As the person with bipolar gets more and more history of not being the crazy one, because of good meds & management, she's shouldering less and less blame for all the crazy in the family, but since that all happened after my partner grew up and moved away, he's still pretty stuck with "the response to anything going wrong is to hunkjer down and control everything until the crazy is over."

But that overlap of behaviors - could be ADHD, could be Aspberger's, could be anxiety issues (that was temporary - when I was having layoffs at my job, kiddo was acting anxious. Surprise!), could be sensory integration - is right where both of them are. Only the one in school is getting evaluated/labeled/treated, though. My partner had to get to "functional" all on his lonesome, no extra help.

But what I'm saying is that I can totally see how TW would just freak the fuck out over any sort of professional intervention, and make up some rationalistic bullshit to cover the freakout, because it's saying both her main role (stay at home mom) and possibly herself is abnormal, and in need of fixing.

Most of us have someone in our life who will say, you know, get over yourself and see this through (in our cases, the school sure pushed us to seek help). I'm not sure we've seen any evidence that TW's husband or parents have the attitude towards kids that you love them even if they're not perfect and you change your theories if they don't fit reality.

[Austin]

I'll tell you, the diagnosis is still flimsy and varied, but as a person with an ADHD label with a partner who has no label but has every. single. trait. that has pointed toward "autism spectrum" in my son, in a lot of cases it *is* about us. There is not one behavior that kid has that neither of us has.

I'm okay with it, I have had a long time with my label & I'm okay with it (and have found it helpful in a lot of situations - tools for adults with ADHD have helped me an awful lot.).

But my partner grew up in a family where nothing was labeled or diagnosed. Everything was fine, fine, fine, fine. Bipolar? TOTALLY NORMAL SHUTUP. Some sort of crippling social anxiety/anxiety that causes angry outbursts when things go wrong? WHAT THAT'S JUST HOW SOME PEOPLE ARE. Total inability to function socially? Well some kids are just weird. Schizophrenia? Oh he was dropped on his head as a baby, it's a shame, too much booze.

Some of the adults in his family are now medicated and much, much better than before. But his emotional response to any sort of talk of mental illness was to just shut down totally. I seriously watched him say to a professional who was evaluating our son "No there's no mental illness in my family." I corrected him and said, wait, what about your bipolar parent? "Oh yeah, one of my parents is bipolar." "So how did that affect you growing up?" "Not at all, everything was fine, totally normal. I mean, sometimes she slept for a few weeks and we didnt' see her at all, and when she is down she calls me crying and begging me to still love her, but it has no effect on me."

So hearing that some things he does himself are indicative of high-functioning autism? Freaks him out a LOT. And then he feels like a failure as a parent for not fixing the kid. And then he feels bad for thinking about himself. It's just a terrible thing, and he has had to work through it himself because (of course) he'd rather die than see a therapist.

I'm just glad we started the process in kindergarten and not when the kid was in high school.

I really just meant that when our children have delays or problems, we have to consider that our children are not mere extensions of us. When parents make the issue about them, they seem less likely to be able to accept interventions. It is always difficult news to hear, and I'm not blaming parents for having strong reactions, but I just think that has to take a back seat to what the child needs.

I agree that it certainly can be about us (the parents) in that there are familial traits in play. It wasn't until our son was DX'd that my husband realized that he had struggled in school in the exact same ways, only the nuns didn't know what to make of it and he just had to work very, very hard to even get average marks. School was very difficult for him and he felt like a failure a lot of time during his childhood, and I know he was lonely b/c he didn't have time for much beyond schoolwork that took him hours longer than other kids. A lot of things make sense in retrospect.

[Rosa]

Oh totally. I just think your approach to parenting is quite a bit more mature & considered than ThatWife's. Practicing a little bit of self-reflection and personal growth while also doing whatever you can to help your child seems pretty much 100% unlike her idea of what being a parent means.

[bananacat]

Labels can be helpful even if you don't need help or if there simply isn't any help available. It's great to have a diagnosis instead of just believing you're lazy or stupid. It took a few years for my hypothyroidism to be diagnosed, and during those years I often thought I was just lazy, and plenty of other people thought it about me. Luckily it's an easy disease to treat, but I was so desperate for a diagnoses that I would have been glad to have any label at all, just so I could tell people that it's not about being lazy.

[jenny_islander]

Fundamentalist parenting "experts" teach parents to move right on past "What did we do wrong?" and blame the child. "Rebelliousness" is the explanation for children not behaving according to plan. So children who have a problem that needs help from a real expert are lectured about character or "chastised." Remember, Lydia Schatz died after being "chastised" exactly as Michael Pearl advised, until she had "no breath left to complain," for the "rebellious" act of repeatedly mispronouncing a word in a language that was foreign to her. And I have seen a toddler "chastised" with a wooden spoon for the "rebellious" act of not doing as her mother said when she was really temporarily deaf from an ear infection.

ETA: Actually, for most parents, it's more like "This kid ain't right, gotta make him/her right with God by making him/her obedient to me" AND "Ohmigod, ohmigod, what did I DO, I am a BAD PARENT" at the same time. Because a good fundamentalist parent wouldn't have kids who keep on writing backwards or being shy or whatever. Following the child training expert's system is supposed to prevent that. Except for the part where human beings don't work that way.

[ems]

As to some of these parents, fundie or not, they somehow believe that the issue is about them. When we were dealing with this stuff with K in elementary school, in talking to other parents who were at the special ed meetings, etc., I was often horrified at some of their attitudes. Yes, I get the labeling thing, and would not want "emotionally disturbed", for instance, but at some point, why is a "label", such a big deal? I remember saying in frustration to one woman, who was bitching about the school refusing to service without a diagnosis and she didn't want a DX because that would mean a label, blah, blah, that they could "label" my son a purple alien if it meant he could get the proper services on a frequent and regular basis. She wasn't very friendly to me after that :D

I think a lot of the fear of labels is related to the stigma that mental/developmental disorders have in our society. I personally think that "labels" (as in diagnoses) are helpful things. The problem is when a person becomes reduced to a label rather than a full person. But for physical problems, I think most people aren't as resistant to labels. I mean, who would be like, yeah, I have a fever, achy throat, etc., but I don't want a doctor to go and "label" me with the flu? Or for a chronic condition - yeah, I won't worry about getting a label for excessive thirst, tiredness, other diabetic symptoms and have to end up taking insulin? In the fundie community, yes their are the people who are extremely skeptical of any type of conventional medication, but for more mainstream people I think it is the stigmatization factor that prevents them from getting help/intervention.