Why do we have to label our children?

Posted by: whereditgo

Why do we have to label our children? - 03/15/15 07:31 AM

I am dealing with issues, and need help understanding. Why do we have to label our children in order for them to get them the help they need. I have 4 kids, one with Down Syndrome who received her diagnosis a couple of days after birth. She is also the only one not in the gifted program. The other 2, who are extremely creative, and considered very bright, had to have a diagnosis in order for them to complete the work they didn't finish during class, at home or after school, rather than being punished during recess. I have one that due to awesome teachers has escaped from being labeled, until this year in 10th grade. It is not that we were not aware, we were reassured that although it would cause difficulty, there wasn't a test for it, and that teachers can easily spot it and offer suggestions for their class. This has been the case until recently. His issue? Dysgraphia, which we have always called "Doctors handwriting". An issue that has been blatantly obvious, needs a diagnosis so he can have an alternate means of showing his work in algebra 2. I am having trouble with this because even though a diagnosis exists now, and I'm sure he will have no difficulty receiving it, is it necessary. My children can not be the only ones this is happening to. My concern is that there is no such thing as normal, and we all have weaknesses. Kids already struggle with being different, while trying to fit in. My parents use to console me and reassure that there was nothing wrong with me, but I have to tell my children the opposite. I am struggling to understand how this diagnosis, at this time, will help, rather than hurt.
Posted by: Tinker

Re: Why do we have to label our children? - 03/15/15 07:53 AM

The reason I would encourage you to go ahead and get a diagnosis now is that it will be required in order to receive accommodations during SAT / ACT testing. This is one thing that I did not consider for my own child and her test scores reflected it.
Posted by: JonLaw

Re: Why do we have to label our children? - 03/15/15 08:23 AM

Originally Posted By: whereditgo
Why do we have to label our children in order for them to get them the help they need.


Because you are dealing with bureaucratic systems that need labels.

That's pretty much it.
Posted by: ljoy

Re: Why do we have to label our children? - 03/15/15 09:00 AM

What Jon said.
Every time I try to put my square-peg DD12 into the round-hole public school, we end up with a new round of testing to prove that there's something wrong with her. When she leaves, the need for diagnosis magically disappears.
Posted by: indigo

Re: Why do we have to label our children? - 03/15/15 09:56 AM

Originally Posted By: whereditgo
My concern is that there is no such thing as normal, and we all have weaknesses. Kids already struggle with being different, while trying to fit in. My parents use to console me and reassure that there was nothing wrong with me, but I have to tell my children the opposite. I am struggling to understand how this diagnosis, at this time, will help, rather than hurt.
Diagnosis merely names the weakness so that appropriate supports and accommodations can be made while the child is in school, so that the child is not deprived access to a full education. It does not mean that there is something "wrong" with an individual, it merely names the weakness and also helps point to known work-arounds, supports, accommodations, and helps the individual learn to compensate for this particular weakness if it is one which may be carried through life. Knowing that others have the same weakness can help a child understand that they are not alone in their struggles, but rather they are in good company and can still achieve success.
Posted by: polarbear

Re: Why do we have to label our children? - 03/15/15 10:25 AM

whereditgo,

Dysgraphia isn't "doctor's handwriting". Please understand, I have relatives who are doctors (several), relatives who aren't doctors and have sloppy handwriting, and a ds who is dysgraphic.

Why do we need labels? We need diagnoses, not labels. We can think of them as labels, or we can think of diagnoses as a way to describe and define to other people what the issue is that is causing a challenge. Why do other people need to know *what* is causing certain behaviors? One example you mentioned above was a child who is punished for not completing a written assignment during class by being held in from recess. Another example is a child who doesn't score as high as they are able to because their slow handwriting prevented them from completing a test that is timed. If a teacher was going to arbitrarily decide that they'll let student X have extra time on a test because he has slow handwriting, then what does that same teacher do when the parent of student Y asks for the same thing, but the teacher doesn't think student Y really has slow handwriting and just wants extra time to go over the test and try to get a better grade? This is basically what has happened with SAT/ACT testing over the years - the diagnosis is necessary because there are people who will request accommodations who *don't* need them.

That's one reason diagnoses are needed and one way in which they are used. It's also what you'll probably see pop up as the *first* reason when you ask around on forums like this. JMO, I think it's an important reason, but not *the* most important reason. The important thing, from my perspective, is understanding *why* handwriting is slow or sloppy or whatever. It's important to understand why our children struggle with a behavior or to complete a task or whatever it is that is keeping them from being able to function to their ability inside or outside the classroom.

So back to the idea of "doctor's handwriting". Yep, doctors seem to have sloppy illegible handwriting (although there is one dr in my family who has beautiful handwriting). Plus often I think that the "sloppy handwriting" is simply happening with drs because when we see them write, they are in a hurry writing a prescription as the last thing during an appointment, their brain has headed on to the next patient they'll be seeing and no one is expecting them or asking them to write neatly. Dysgraphia isn't the same thing as "sloppy handwriting". Dysgraphia is a neurological condition in which there is a disconnect between the brain and the hand that causes a person to not develop automaticity in handwriting, which is very different than "sloppy" handwriting. Anyone can have sloppy handwriting, whether or not you know how to form the letters. For most of us, forming letters becomes second nature after just a bit of instruction and practice. For a person with dysgraphia, it takes a *lot* of practice, and automaticity sometimes never develops. For instance, my ds (15 years old, having been through handwriting OT and countless years of practice in school, can not remember how to write in cursive and will tell you that he "likes writing numbers better than letters because there are only 10 numbers to remember how to draw"). He has been through spells (particularly after handwriting OT and after learning how to write cursive) where his handwriting was very legible. His 5th grade teacher was constantly trying to tell us he wasn't dysgraphic because his cursive writing was so neat and easy to read. His handwriting now is nowhere near that legible, but fwiw, I have heard of dysgraphic students who do develop legible neat handwriting.

What truly dysgraphic students don't typically develop the ability to compensate for is the impact of dysgraphia on working memory. While a dysgraphic person is using handwriting all of their working memory is used up simply by figuring out how to form each letter. There is nothing left over to think about spelling, punctuation, grammar, etc, and the really big impact is in the ability to get their thoughts. Most dysgraphic will have a notable difference in the quantity and quality of their "writing" if you compare what comes out with handwriting vs a verbal response.

Which brings us around to the whole idea of why does a diagnosis matter? I mentioned understanding the root cause of what is causing an observed challenge. If a child was dysgraphic, for instance, and if every teacher that child had thought, ok, I"ll give him more time to finish his work, or I"ll do my best to try to read what is written and not count off for handwriting, that may seem like "enough" but it's missing the point. The child has missed out on the chance to learn how to use accommodations which will let him/her communicate fully, which eventually is going to cause both frustration for the child and most likely cause them to fall below where they could be in school due to their true potential.

Most importantly, diagnoses give the people with the challenge an understanding of why something is difficult for them. It may seem like you're saddling your child with an uncomfortable label, but ultimately it's the *challenge* that causes frustration and possibly loss of self esteem, not a label that's attached to it. The diagnosis/label provides understanding. Pretending it doesn't exist by not giving its "label" won't make a challenge disappear and won't make other people not notice that there is something "different" about a child.

Last thing, your ds is a teen now and in high school. It's not easy trying to help a teen accept that they might have a challenge or be different. The thing is, not everyone gets diagnosed when they are young, but it doesn't mean they haven't lived through years of wondering why their handwriting is "slow" or why they struggle with getting their thoughts out or why they feel different from other kids. I'll end with the example of a relative of mine who *isn't* a doctor, but becoming a doctor was her dream. The thing is, she's dyslexic, and she compensated so well for so many years in many ways without a diagnosis that she was able to go all the way through college with amazing grades and professors who loved her and recommendations galore for med school, but she always ran out of time on the verbal portions of standardized tests. She didn't get into med school because of that, and by the time she, as a young adult out of college finally realized that she could get a diagnosis, she also was no longer in school and also didn't have the $ for a private diagnosis.

polarbear

ps - one other reason for a diagnosis - by the time a student is in high school (here), the school staff expects them to be advocating for themselves, not having a parent step in when there is an issue. Having the diagnosis and understanding it makes it much easier for my ds to advocate for himself.

pps - I wrote everything above specifically about dysgraphia - I am not sure if your ds has actually been diagnosed, or it's being assumed he's dysgraphic? If he hasn't been diagnosed, I'd suggest you pursue a diagnosis either through the school or privately asap. He won't be able to get extended time etc on the ACT/SAT without it, and even with a diagnosis at this point in time it might be tough. The ACT/SAT sites request documentation showing a history of accommodation, so you may want to go back and get written letters from teachers in the past who have accommodated and who believe he needs extra time.
Posted by: polarbear

Re: Why do we have to label our children? - 03/15/15 10:25 AM

Originally Posted By: indigo
Originally Posted By: whereditgo
My concern is that there is no such thing as normal, and we all have weaknesses. Kids already struggle with being different, while trying to fit in. My parents use to console me and reassure that there was nothing wrong with me, but I have to tell my children the opposite. I am struggling to understand how this diagnosis, at this time, will help, rather than hurt.
Diagnosis merely names the weakness so that appropriate supports and accommodations can be made while the child is in school, so that the child is not deprived access to a full education. It does not mean that there is something "wrong" with an individual, it merely names the weakness and also helps point to known work-arounds, supports, accommodations, and helps the individual learn to compensate for this particular weakness if it is one which may be carried through life. Knowing that other have the same weakness can help a child understand that they are not alone in their struggles, but rather they are in good company and can still achieve success.


ITA to everything indigo said smile

polarbear
Posted by: polarbear

Re: Why do we have to label our children? - 03/15/15 10:32 AM

Originally Posted By: ljoy

Every time I try to put my square-peg DD12 into the round-hole public school, we end up with a new round of testing to prove that there's something wrong with her. When she leaves, the need for diagnosis magically disappears.


ljoy, I think most of us with high ability children, children who have no challenges as well as children who have some type of challenge, find that fitting our kids into public school is far from ideal and often quite difficult. Public school is, by necessity, designed to educate a large number of individual children to an average goal with limited $. Very few kids actually find an ideal "fit" in a public (or private) school, and most parents have to settle for less than ideal with any brick-and-mortar school. That has *nothing* to do with whether or not a child has a disability, which is a much different thing than trying to find the appropriate educational environment that meets a child where they are intellectually and allows for maximum intellectual growth.

The ironic thing about public schools and children with disabilities is - they are *often* the best place to be because they are required by law to provide appropriate accommodations and instruction to children with disabilities.

I probably haven't explained this well, but as a parent of two children who are both intellectually gifted and also have disabilities, it's simply not the same thing as saying "my child doesn't fit here therefore I should test for a disability". My kids' issues extend outside the classroom, outside any classroom, and they don't go away just by finding them a gifted classroom or better overall intellectually challenging classroom.

Hope that makes sense!

polarbear
Posted by: Cookie

Re: Why do we have to label our children? - 03/15/15 10:43 AM

The other option is getting the fun labels of "s/he is so smart if only s/he weren't so lazy (unorganized, slow, defiant, distracted, unmotivated, etc.)". If people don't have a name for a problem then obviously the child just isn't trying hard enough or putting in the effort.
Posted by: DeeDee

Re: Why do we have to label our children? - 03/15/15 11:00 AM

Technically, they don't need a diagnosis to get services through the public schools under the "response to intervention" model: only documented need. Unfortunately, most schools don't follow this process properly.

I would say that you can see labels as a "bad thing" (marking a lack of some kind) or you can see them as a means for understanding strengths and weaknesses. DS told me that he was very relieved to know there was a name for the things he struggled with-- that it wasn't a moral failing, but something that came from how his brain was made.

Do you object to the "gifted" label as well as to disability labels?
Posted by: JonLaw

Re: Why do we have to label our children? - 03/15/15 11:12 AM

Originally Posted By: DeeDee
Do you object to the "gifted" label as well as to disability labels?


Gifted is a particularly bad word to use as a label.
Posted by: Mom2Two

Re: Why do we have to label our children? - 03/15/15 11:49 AM

Education is about fighting immediate fires, so you need to have a fire going to get help. The label creates a fire.
Posted by: bluemagic

Re: Why do we have to label our children? - 03/15/15 12:23 PM

I fought this myself when my DD20 was in 2nd grade. I didn't see the need to 'label' her. She was a sweet, lovable little girl. She was a bit young for her grade and not quite keeping up the pace with the other kids, but she was learning and she was happy. And at the time in the lower grades her elementary school was helping every kid that seemed to be struggling. What pushed me over the edge was noticing that our school budgets were shrinking. So as others say it's bureaucracy. The only one to guarantee that she continue to get services was to get her labeled.
Posted by: ndw

Re: Why do we have to label our children? - 03/15/15 03:39 PM

Labels are actually very important to provide a precise language of discussion which contributes to understanding, intervention and research. "Labels" differentiate and this can be very important because a symptom or sign can be caused by a variety of underlying problems which require different solutions. A medical example is talking about raised blood sugar. That is an imprecise description of a circumstance. It is very important to determine if the problem is being caused by islet cell failure, insulin resistance, related to medication or underlying sepsis as a few examples.
Poor handwriting can be due to a neurological problem, a vision disorder, motor disability etc. The labels are more precise ways to describe the issue at hand, there is often an attempt to relate the disability to a cause and this assists both with recognition of the fundamental issue and the interventions required to assist. An accurate diagnosis, with its label, also helps if there are known secondary issues that might be attached to a disorder which are yet to present or be recognised as they can be monitored for presentation. Ultimately it also helps in identifying different categories of disability to research more about the underlying problem.
Value judgements attached to labels are a separate issue. That is better overcome by education and exposure than denial of diagnosis.
Posted by: ljoy

Re: Why do we have to label our children? - 03/15/15 04:58 PM

Originally Posted By: polarbear
Originally Posted By: ljoy

Every time I try to put my square-peg DD12 into the round-hole public school, we end up with a new round of testing to prove that there's something wrong with her. When she leaves, the need for diagnosis magically disappears.

...I probably haven't explained this well, but as a parent of two children who are both intellectually gifted and also have disabilities, it's simply not the same thing as saying "my child doesn't fit here therefore I should test for a disability". My kids' issues extend outside the classroom, outside any classroom, and they don't go away just by finding them a gifted classroom or better overall intellectually challenging classroom.


I do understand. In our case, DD needs more time for everything. Lots more time. In our schools, she manages perfectly average to slightly below grades if she works three times as long as the other kids, so we have to prove that this is actually a disability so she can be accommodated. We have to demonstrate below grade level performance. Outside, the teachers see how much she struggles and are able to give her the time she needs without the labels; the disability doesn't go away, it just stops requiring a label.
Posted by: Wesupportgifted

Re: Why do we have to label our children? - 03/16/15 05:16 AM

I just think of it as how humans handle or process information; we categorize, classify, compare, say it is more like this and less like that in order to have a way of communicating our understanding to date. The labels are not the endpoint; it can be a helpful beginning to a solution for a plan or approach or next step, etc.

I find the printing / handwriting issue fascinating; it is sometimes an issue for us, too. Maybe our brains move faster than our hands? We keep thinking, in the future, it may be a non-issue. Presumably, we could be so much more productive if what we are communicating is at the speed of thought rather than hand.

Gifted kids tend to 'get labeled' right at the beginning of social activity simply because the largest group in the middle always point out our differences, might bully us, and try to assimilate us into the bigger group; in adolescence, it is called peer pressure, but even as adults there are pressures to conform to ways of behavior.

As far as I know, in any society, the percentage of intellectual types is always less than the other roles people might play in groups. Maybe in some way, it is natural (by natural design) that if everyone was a more cerebral type it would not benefit groups overall, even though it might mean less labeling.
Posted by: cmguy

Re: Why do we have to label our children? - 03/16/15 07:46 AM

Originally Posted By: JonLaw
Originally Posted By: DeeDee
Do you object to the "gifted" label as well as to disability labels?


Gifted is a particularly bad word to use as a label.



I much prefer "asynchronous".
Posted by: polarbear

Re: Why do we have to label our children? - 03/16/15 08:21 AM

Originally Posted By: ljoy
Originally Posted By: polarbear
Originally Posted By: ljoy

Every time I try to put my square-peg DD12 into the round-hole public school, we end up with a new round of testing to prove that there's something wrong with her. When she leaves, the need for diagnosis magically disappears.

...I probably haven't explained this well, but as a parent of two children who are both intellectually gifted and also have disabilities, it's simply not the same thing as saying "my child doesn't fit here therefore I should test for a disability". My kids' issues extend outside the classroom, outside any classroom, and they don't go away just by finding them a gifted classroom or better overall intellectually challenging classroom.


I do understand. In our case, DD needs more time for everything. Lots more time. In our schools, she manages perfectly average to slightly below grades if she works three times as long as the other kids, so we have to prove that this is actually a disability so she can be accommodated. We have to demonstrate below grade level performance. Outside, the teachers see how much she struggles and are able to give her the time she needs without the labels; the disability doesn't go away, it just stops requiring a label.


ljoy, I'm sorry - I misunderstood what you meant before - I thought that you meant that "outside" the things that seemed to be an issue at school disappeared, when instead you were referring to the need for the label.

Originally Posted By: ljoy
the disability doesn't go away, it just stops requiring a label.

I still believe having the "label" has been very helpful for my 2e kiddos outside of just getting accommodations at school. Dysgraphia/DCD/dyslexia are issues that impact them in areas of life outside of school, knowing what the diagnosis is makes a difference in how you approach accommodating and remediating, and each of them appreciates understanding what their diagnosis is. Sometimes getting *to* the correct diagnosis is a long journey - it definitely was for our dyslexic dd... but having it has still been extremely helpful in understanding how to help her. So I guess I'm not sure how you get to that point without having the label?

polarbear
Posted by: DeeDee

Re: Why do we have to label our children? - 03/16/15 08:24 AM

Describing reality precisely is, in general, a useful problem-solving tool. First you have to know what's going on, before you can know how to move ahead. Having precise words for challenges and strengths is, for my family, part of that.

(We don't say "gifted" either-- we like to be precise.)

Our experience is like Polar's.
Posted by: Dude

Re: Why do we have to label our children? - 03/16/15 08:40 AM

Originally Posted By: ljoy
What Jon said.
Every time I try to put my square-peg DD12 into the round-hole public school, we end up with a new round of testing to prove that there's something wrong with her. When she leaves, the need for diagnosis magically disappears.


Indeed.

The factory model of education requires taking round pegs and pushing them through the correctly-sized holes. But because we're talking about highly-variable individuals, even the most conforming pegs are best described as round-ish, and the education factory just selects the best-fitting hole, and pounds the peg through with as much effort as it needs.

Because we know there are enough pegs for which the round holes are a complete disaster, the workers have been provided with a handful of other shapes... square, oval, star, etc. The pegs who "fit" into those holes are even more variable than the round ones, but that's okay, we can just use bigger hammers.

Pegs that are square (gifted) and starred (LD) at the same time make workers frantic, because one peg can only go in one hole.
Posted by: blackcat

Re: Why do we have to label our children? - 03/16/15 10:27 AM

If there is no label, then schools/teachers tend to see the weaknesses as laziness, oppositional behavior by the child, or whatever, (and penalize the child accordingly) rather than a disability that needs supports and remediation. So a child with dysgraphia, for instance, can improve if they are given assistance with writing, and they will need modifications in the classroom. Some good teachers recognize the disability without it being labeled, and offer assistance, but I think this is the exception rather than the norm and you need to work with each individual teacher and explain it to them, and hope that they comply with your suggestions. As more and more teachers become involved with the child, it's not exactly an ideal situation. With a 504/IEP/label, it's right there in black and white. Child has X, you need to do Y.
Posted by: Platypus101

Re: Why do we have to label our children? - 03/16/15 11:38 AM

There have been a few recent posts addressing the pros and cons of labels (below), so I'll stay off my embrace-the-label soap box (especially since polarbear always says it better!). But to echo comments above, I can't resist adding that:

1) DD8 has blossomed with her labels (dyslexia, ADHD-I) and targeted remediation. Her teachers recently could not say enough about her extraordinary new confidence, cheerfulness, willingness to try hard things and take on risk, and just general radically-improved attitude.

2) Her school and teachers - who have always been lovely and supportive and have tried hard to help - nonetheless treat her quite differently now that they explicitly recognize disability and anxiety-driven behaviours, rather than seeing it as non-interest and oppositional behaviour. Now that they're trying to fix the right problem, she is far more willing to accept help. Suddenly, they can see how hard she is trying, and also how the stress of being unable was causing her to push people away when they're trying to help her. Also, her report card suddenly reads like dyslexia 101: a child who excels at understanding and oral contributions but struggles with reading and writing. Previous reports simply described a mediocre performer, missing both highs and lows - and really, missing the child entirely.

giftedissues.davidsongifted.org/BB/ubbthreads.php/topics/208379/Re_What_to_share_with_DS_regar.html#Post208379

giftedissues.davidsongifted.org/BB/ubbthreads.php/topics/210357/Re_Do_we_tell_DS7_he_is_dyslex.html#Post210357
Posted by: HowlerKarma

Re: Why do we have to label our children? - 03/16/15 11:58 AM

Originally Posted By: JonLaw
Originally Posted By: whereditgo
Why do we have to label our children in order for them to get them the help they need.


Because you are dealing with bureaucratic systems that need labels.

That's pretty much it.


Yup.


You have three options when your differences leave you so far from normative experience that you cannot participate in certain life (or educational) activities the way that others without those difference can and do-- often without even thinking about the task much.

1. Avoidance Change your environment or the tasks required of you-- limit yourself to mitigate the difference, in other words.

2. Acceptance Accept that you will not be able to do the things that those around you are doing-- accept poor performance and access as your lot in life, and work as hard as you can to make up the difference on your own, without asking anyone for anything.

3. Advocacy Seek ways to compensate or mitigate particular barriers within the normative environment so as to allow your access to be more similar to those who are normative-- usually this will involve some kind of formal or informal arrangement so that the method of the life activities in question may be modified somehow.


Yes, everyone has quirks, limitations, and differences.

Not everyone sees a clear need to use choice 3 for every one of them-- but sometimes that is a difference in how large the difference is, how important an activity is to an individual, etc.

This gets to the heart of what constitutes "substantially limited" when determining whether or not a person is afforded protections under ADA, actually. Advocacy requires a label, because it's about rights, not largesse. Largesse is fickle when you're dealing with people. Rights are far less so.

smile
Posted by: Aufilia

Re: Why do we have to label our children? - 03/19/15 10:08 PM

There have been so many good answers in this thread, I have been hesitant to add more, but: a label is a description of a pattern of behavior. In the context of the original question, it is shorthand for a particular pattern of weaknesses which are known to be helped by certain types of accommodations. You could forego the label and let everyone who meets your child have to rediscover for himself or herself what those patterns and remediations are, but that's a slow and inefficient process full of frustration and try-and-fail. It directs people to the right paths to reduce or eliminate fails painful, time-wasting, and unnecessary fail cycles. The label keeps everyone from having to reinvent the wheel, or at least helps everyone in delivering new and better wheels.