Due to family history, I have a child at higher risk of certain disabilities: mood disorders, borderline personality disorder, ADHD, and autism spectrum conditions. Even if I don’t have a child who is disabled enough by these conditions to qualify for a diagnosis, they may have subclinical symptoms.
So there’s sort of an interesting question, which is how– as a parent– you deal with knowing that your child is at elevated risk of having one of these conditions.
My philosophy as a prospective parent has been affected by the principles of universal design. Basically, it is much easier and less expensive to design things ahead of time with the needs of disabled people in mind, rather than to retrofit a building or an object which was designed without thinking about disabled people. Think about architecture. If you’re planning for disabled people ahead of time, you can incorporate a ramp into the original blueprint and build it along with everything else. If you wait until the first person with a wheelchair wants to use your building (or until regulations require you to let them in), then retrofitting is probably going to be really expensive, result in an ugly and awkwardly positioned ramp, and require you to close the building for six months for construction.
I think there’s a similar thing for parenting disabled children. Parents of disabled children often grieve the loss of their expectations and hopes for their child. In some tragic cases, the parents become bitter and angry at their children for not being the children they wanted, in some cases going so far as to accuse the children of ruining their lives. Discovering a child is disabled involves a major reworking of a number of aspects of family life, whether that means setting aside time for physical therapy with your child each day, learning techniques to manage your emotionally or developmentally disabled child’s meltdowns, searching for wheelchair dance lessons, or simply shuttling your child from appointment to appointment.
There’s also a cost for the children. Children with many disabilities– particularly invisible disabilities– may go undiagnosed for years, in which time their needs are not accommodated, they aren’t learning the skills they need to succeed as disabled people, and they may acquire toxic shame and anxiety that follows them for the rest of their lives. In some cases, a lifelong disability may not be diagnosed until the person is an adult, in which case they’ve gone through their entire childhood without appropriate accommodations or support.
Universal design for parenting doesn’t mean assuming that all children are disabled: of course, even in families with a history of disability, many children will be abled. But it does mean parenting in a way that would be good parenting whether the child is disabled or not.
For instance, I’ve mentally prepared myself for the prospect that my child is disabled, including forms of disability I might otherwise have a particularly hard time dealing with (such as intellectual disability, the child being nonverbal, or violent meltdowns). I’ve talked to my husband about disability to make sure we share the same values, the same way I would talk about other parenting issues like discipline or education or screen time. My children are at risk of childhood-onset depression, so I’m taking the perhaps unusual step of proactively taking them to psychological checkups. Hopefully, they will feel comfortable talking about their symptoms with a therapist, even if they don’t want to bring them up with a doctor. (Of course, I am not going to look at my children’s therapy records; since children have no legal right to confidentiality, it’s particularly important for parents to be conscientious about allowing them their privacy.)
There are also some accommodations I can implement without a disability. I can make a particular effort to validate my children’s feelings, because invalidating environments tend to exacerbate symptoms in children with a genetic predisposition to borderline personality disorder. I can proactively teach emotional regulation skills. If it seems like my child might benefit from social stories or visual schedules, commonly used to help autistic children, I can use them. I can purchase toys that help develop fine and gross motor skills, which autistic children are particularly likely to have trouble with. I can have a daily routine, which helps children with ADHD and autism. I can avoid shaming my child for forgetting or losing things, which leads to the comorbid anxiety that causes so many problems for adults with ADHD. I can try giving children clear instructions (“put your toys on the shelf,” not “clean your room”), which helps children with ADHD remember things.
Naturally, I haven’t done universal design for parenting for every conceivable disability. For instance, there is a step outside my front door, even though this would be inaccessible for a child who uses a wheelchair. I haven’t learned ASL, even though Deaf children with access to sign language have higher academic performance, and have no intentions of raising my children bilingually in sign and English. That’s because both of those would be fairly costly for me– I’d have to move, I’d have to learn a new language– and I have no reason to expect my children are any more likely than average to be Deaf or use wheelchairs. But I think if your child has an above-average chance of having certain disabilities, it’s worth it to be prepared.
Alex Page said:
‘since children have no legal right to confidentiality’
Uhhh…
That’s… really bad.
Seriously, why the frick not?!?
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ozymandias said:
At a certain point, it makes no sense for children to have a legal right to confidentiality. As an extreme example, my six-month-old does not understand the concept of “confidential” and does not have any receptive or expressive language, making this hypothetical right pretty useless to him. While a six-year-old might benefit to a degree from confidentiality, they can’t have the degree of confidentiality that an adult has, because they can’t pick up their own medicines from the pharmacy and might have difficulty reporting their own symptoms.
Of course, this is extended to teenagers, which is just bonkers.
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Paperclip Minimizer said:
It’s not that way outside the US. (Source: I had to see psychologists as a child and fortunately had a right to confidentiality.)
WTF USA
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Alex Page said:
Yeah that’s all fair enough, true. My mind just leapt to cases where a total lack of right to confidentiality would obviously be awful, such as teenagers/psychiatrists, etc.
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Sophia Kovaleva said:
@Paperclip Minimizer
What country was that, and you do you know the specific regulation that guarantees children (starting at what age?) the right to medical privacy? My understanding is that in most countries, legal guardians can request access to medical records of minors (sometimes with exceptions, such as gynecological records sometimes starting being private at the age of 16), but obviously I don’t know the details for every single country.
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Lambert said:
UK medical law considers 16 year olds competent to do their own thing.
Below that age, children can sometimes consent to certain medical stuff being done, on a case by case basis.
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Paperclip Minimizer said:
@Sophia
France, and I was specifically told I had a right to privacy and my parents couldn’t know what I said to my therapist.
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Paperclip Minimizer said:
Off-topic question: What’s with the capitalization of “deaf” ?
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professorgerm said:
It’s similar to the capitalization of Black in some contexts. Treatment of people that use ASL as a separate culture rather than as a descriptor.
Source: https://www.nad.org/resources/american-sign-language/community-and-culture-frequently-asked-questions/
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Paperclip Minimizer said:
Capitalizing “Black” is popular in the alt-right, so this is a weird comparison. Why the do we have to capitalize words when referring to culture ? Do we have to say “Nerd culture” now ? And culture isn’t even the context of Ozy’s post !
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gazeboist said:
On the one hand, capitalizing races is so sketchy I’ve started leaning against capitalizing continents (and to a lesser extent countries). On the other hand, milk is famously popular in the alt-right.
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Paperclip Minimizer said:
@gazeboist
Stop being obnoxious. When someone say X is popular among Y, this mean that X is more popular among Y than baseline. This is what I meant, this is what everyone mean by this.
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ozymandias said:
[modvoice] Don’t call people obnoxious.
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Paperclip Minimizer said:
I’ve *never* seen “black” or “white” capitalized outside of the alt-right or human biodiversity blogs.
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Paperclip Minimizer said:
@ozymandias
sorry
this blog should have an edit button
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gazeboist said:
In my experience, “White” is distinctly alt-right/HBD, while “Black” is more of a horseshoe phenomenon. While this is I think the first time I’ve seen “Deaf” on its own, I’ve run into “D/deaf” quite a bit in the general disability rights sphere.
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Paperclip Minimizer said:
@gazeboist
In what context is “black” capitalized outside of the alt-right or human biodiversity writing ? Do you read a lot of black nationalist writings ?
“D/deaf” sounds like a weird kink.
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Deiseach said:
I’ve *never* seen “black” or “white” capitalized outside of the alt-right or human biodiversity blogs.
I have, and in the types of places that are not alt-right but on the opposite curve of the horseshoe. It’s all context-dependent; I think it started off in the same vein as 70s Black Power etc., was used in theoretical/political contexts to emphasise the unique and separate Black culture/ethnicity from mainstream American, and was then taken up by the kind of allies, would-be allies, and would-be woke progressives so that it disseminated out into wider use. Some people can be very touchy about whether you refer to them as “Capital Letter whatever versus small-letter whatever”, I’m going to take it you’ve never seen the eye-clawing about “trans*” versus “trans”? That last amused me greatly because it was two different Woke Progressives lecturing the normies on what usage they should be using; one person instructed all us great unwashed that we should refer to “trans*”, then the other leaped in, in a show of Woker Than Thou, to lecture them on how “trans*” was a slur and had been used by undesirable types in the past, and only the pure unvarnished term “trans” was at all acceptable, if you used the asterisk-version you were a horrible transphobe!
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tcheasdfjkl said:
@Paperclip Minimizer
I’ve definitely seen “Black” capitalized by people in social-justice-friendly spaces using it to describe *themselves*.
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sconn said:
If you think that’s bad, try figuring out whether to say “autistic” or “with autism.”
(My son …. um …. fits those descriptions. But he’s not old enough to have his own preference so what do I even say???)
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Julia Wise said:
Some basic baby sign is something a lot of families of typically-developing kids find helpful (and may be especially helpful with certain disabilities.)
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Aapje said:
Asymptomatic physical checkups don’t seem worth the cost and may harm health on average, especially the intensive kind. Asymptomatic psychological checkups are different, but not necessarily better, given that psychiatrists seem less competent at healing/helping people than other doctors. So I wonder if that is a good idea.
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Sophia Kovaleva said:
Wouldn’t learning/teaching ASL also a good accommodation for people who are non-verbal some of the time, and also people who have auditory processing issues? I haven’t gotten around actually doing that, but I have thought way more than once than knowing it would actually be useful for me.
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Paperclip Minimizer said:
What does “toxic shame” mean ? I can’t find any scientific source on this, only self-help pseudoscience.
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gazeboist said:
At least in an ADHD context, I believe Ozy is referring to rejection sensitive dysphoria and similar anxiety patterns that emerge as a consequence of a distinct, underlying condition (as opposed to a more general anxiety disorder).
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Paperclip Minimizer said:
I don’t understand. How is comorbid anxiety supposed to be reduced by universal design ?
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Deiseach said:
How is comorbid anxiety supposed to be reduced by universal design ?
I imagine the idea is that a ‘normal’ child may forget or lose things through carelessness, lack of attention, being distracted by something more interesting, etc. Being scolded for this will help prevent it happening again. A child with a specific problem will be prone to losing/forgetting things, and being scolded won’t help there since they are not doing it ‘deliberately’; all that will achieve is to make them feel ashamed and anxious (and probably get into routines of obsessively checking and re-checking that they have/done everything they are supposed to).
By identifying at the start that the child has needs, and setting the environment up to cater to those needs, and altering behaviours on the parts of parents/caregivers from scolding about forgetting/losing things to giving clear instructions in a calm and patient manner, you then help the child and don’t plant the seeds of anxiety over something that is not very much within their control.
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Paperclip Minimizer said:
I get the shame part, but why the anxiety ?
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ozymandias said:
In my experience, many people with ADHD have chronic anxiety due to their childhood experience of being randomly punished all the time for things they had no idea they were doing wrong. (Sometimes their adult experience as well.)
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Paperclip Minimizer said:
Oh, do you mean social anxiety ? I can get why people with ADHD could be socially anxious about it. I don’t see why they/we could be anxious about it for nonsocial reasons. I’m asking because some people on the /r/slatestarcodex subreddit seem to be confused about this too.
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Paperclip Minimizer said:
(Er… giant trigger warning for ableism in that /r/slatestarcodex thread.)
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tcheasdfjkl said:
@Paperclip Minimizer
Chronic shame about failing at things can lead to anxiety about failing at things. Like, if the consequences of losing a thing aren’t just “you have to replace the thing” but also some flavor of “this is evidence that you can’t handle your life”/”you are a Bad Person now”, then there’s a lot more fear attached to the possibility that you might lose something. Yes, some of that fear is social – you might be scared to admit it to others when you lose a thing for instance – but to the extent that you’ve internalized a moral system in which losing things diminishes your praiseworthiness, the fear can just be about your own judgment of yourself.
(I’m a person with ADHD who has struggled with both the shame and anxiety and felt absurdly grateful in response to that particular line in Ozy’s post.)
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gazeboist said:
@tcheasdfjkl well said. In my experience it’s all one negative emotion, and whether that emotion is best characterized as “shame” or “anxiety” has more to do with where I am in relation to the task than with any inherent facts about the task.
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gazeboist said:
(the anxiety is a semi-rational prediction of future shame, essentially)
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Paperclip Minimizer said:
@gazeboist
PREDICTIVE CODING IS EVERYWHERE
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Deiseach said:
If you are concerned about, or are preparing for, things such as your children being non-verbal, I don’t know the American situation but there is a simplified sign language system used in Ireland called Lámh (Irish for “hand”) which is designed for children/persons with non-verbal, delayed verbal development, or communication difficulties. It’s a limited set of signs, there is a starting basic version, and it is learned by young children with additional needs (which includes children on the autism spectrum), children with Down’s Syndrome, etc.
If you are getting your children assessed, then I will presume the therapists can tell you if there is a similar programme in the US and if it would be suitable/necessary. Again, I don’t know how Early Intervention services/programmes are set up in California, but I’m sure there is a system in place, and if there were any signs at six months that your child had developmental difficulties your doctor would be recommending you to them?
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sconn said:
I feel like my parenting has been pretty well prepared for whatever my kids might have, with a few exceptions. I didn’t have a lot of expectations, I treated my kids’ “failures” as just something they were still learning rather than something to punish, I acknowledged they would meet milestones at their own pace. But after I found out my oldest has autism, I did wind up having some regrets. I wish I had “followed the child” a little bit less and worried a bit more about milestones. For instance, if someone suggested that maybe my toddler was a bit uncommunicative and standoffish, I would say “it’s his personality, I’m not going to try to make him be something he’s not.” But in retrospect I kind of wish I had made an effort to engage him more and play more cooperative games. You don’t need a diagnosis or official therapy to work on your child’s weak points. (And, of course, their strong points! Because none of this is meant to say you don’t jump right in to your child’s latest obsession or let them be themselves.)
As a result, my 4th kid is getting a lot more coaching to meet those milestones. When she didn’t make eye contact at 4 weeks, I played peekaboo a lot anf tried to catch her eye till she got it. When she didn’t respond to her name, I played games where I used it a lot till she caught on. It feels weird and tiger-mommish, but I figure if she’s NT it’ll do no harm, and if she’s autistic or delayed the extra practice can only help.
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ethicalfairtradefashionability said:
I feel like being aware and alert for your child is huge. If I would’ve had someone looking out for me and signals, I may have learned coping skills much earlier!
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