Parenting mindset/values

[SFisher]

I’ve found that really need a clear mindset and value system in order to advocate and find providers and services for my neurodivergent child.

Anyone else?

I’m curious what resources, books, people, etc have helped you to construct your mindset and values regarding your child and their needs?

This is something that will always be evolving, but I’m looking to grow in this area.

thanks!

[Lecka]

I think writing out values and priorities really helps in making decisions.

 

What are the top values?  What are the most important goals/priorities?

[Lecka]

These are hard to come up with and take adjusting, but it makes decision making so much easier.  

[Lecka]

For values for me holistic/whole child and “what I want childhood to look like” were what I looked at first for childhood.

 

I did have values around what I want childhood to look like that helped me with balance, my personality is to do too much I think, so I would want to make sure I was providing balance.

 

A balance between adult-led and child-led was important too, special needs kids can miss out on enough child-led time, but need more adult-led time, too.  
 

High structure was basically a requirement for several years.  
 

Trying new things and looking at what really is working goes a long way, too.  

[Lecka]

I read a lot of parenting memoirs, a lot of autism parent memoirs.  

[SFisher]

 

2 hours ago, Lecka said:

parenting memoirs

The memoir reading is intriguing.

my son is 2e, so 2e memoirs or 2e parenting memoirs could be helpful to me.

The only twice exceptional memoir I can think of is this:

Square Peg: My Story and What It Means for Raising Innovators, Visionaries, and Out-of-the-Box Thinkers https://a.co/d/gB1Curj

It’s the personal experience of a 2e person, not a parenting memoir. I haven’t read it yet. 

this book is close too:
Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities https://a.co/d/3R9pZrQ

This was a little bit of a memoir and manifesto … by David Flink who has dyslexia and adhd and is quite accomplished.

I’ve listened to interviews with Todd Rose and Scott Barry Kaufman, they have some relatable childhood experiences.

Anyone know of more 2e memoirs or 2e parenting memoirs? Or maybe 2e people who speak/write about their experiences?

Edited March 6 by SFisher

[Lecka]

Some special needs parenting memoirs are not marketed as 2e, but turn out to be 2e.  
 

Besides parenting memoirs, maybe books by adults who had similar struggles as a child.  
 

Off the top of my head, I know Andrew Solomon mentions it in Far From the Tree, which is a big book about special needs parenting.  It’s also what he chose to write and it’s not representative.  But I do like it.  
 

The author mentions in the introduction, that he had dyslexia and his mother tutored him, he felt different as a child, if I remember correctly.  
 

I think I have seen more of interviews with adults who had dyslexia and being asked about how it affected them in childhood, I don’t know where I’ve seen it, but I have seen it.  

[SFisher]

36 minutes ago, Lecka said:

Besides parenting memoirs, maybe books by adults who had similar struggles as a child.  

Yes, I have actually read quite a lot about disability and parenting disabled kids. It has been helpful and informed my parenting values and perspective. I would say these have mostly been kids with visible disabilities. 

Your responses are helping me whittle down what I’m looking for more precisely at the moment.

My son presents mostly as gifted, or sometimes as average. The disability isn’t obvious. People often interpret his deficits as being uncooperative, defiant, procrastinating. He often works around deficits, in intelligent/creative/unusual ways. 

So I want more knowledge/perspective on things like

invisible disabilities

masked disabilities

compensated disabilities

and how to advocate/parent for these less obvious disabilities

 

[Lecka]

Maybe ADHD?

[hepatica]

This is such an interesting topic! I am currently writing a book about my experience as a parent homeschooling three dyslexic children, but I am fascinated by the question of mindset that you pose. Sometimes I wonder if my book is more about twice exceptionality than dyslexia. The mindset was such an evolution for me. I started with my first child not really believing there could be a problem. She seemed so bright and capable how could she possibly be struggling to read? Eventually disbelief turned into some sort of acceptance and that turned into a certain doggedness about fixing the problem. The disbelief returned as I realized my second and third children were also dyslexic. By the time I got to evaluations and accommodations and advocating in high school I think my mindset had turned into determination and almost bullheadedness. Books like The Dyslexic Advantage, and gathering and studying all the very jagged neuropsychological test results really turned my mindset from one of fixing the problem to one of advocacy, and fixing the world. And that is where I have landed two decades later. So mindset, for me, was a real evolution and my mindset varied as different tasks were required (teaching my kids to read vs interacting with the larger institutional structures of education so that they could apply to college etc)

A couple of memoirs that I have found interesting: The Electricity of Every Living Thing, by Katherine May; A Thousand Ways to Pay Attention, by Rebecca Schiller; Everything You Ever Wanted, by Jillian Lauren; Raising a Rare Girl, by Heather Lanier (this one is about a child with a rare disease but she tackles societal ideas about disability so well). I also have loved novels by Angie Kim, Miracle Creek, and Happiness Falls, which have neurodiverse kids and their parents at the center of the story. 

The question of masked or invisible disabilities is so complex and I think wildly under-appreciated. I have struggled so much with schools that want to discontinue accommodations when a student hits the average range. It has been a constant push to argue that students who want to take AP courses still need their accommodations. 2E kids can be completely lost and invisible without constant advocacy. I also found the invisibility of dyslexia to be a real challenge. It showed up as struggle only in certain settings. Students can seem super intelligent in class discussions etc and that leads teachers to think their challenges are not real, that they are just lazy or uninterested. I felt, all the time, as a parent that I had to be the one educating all the teachers my kids came in contact with. 

[SFisher]

4 hours ago, hepatica said:

The question of masked or invisible disabilities is so complex and I think wildly under-appreciated.

Thanks for your response.

We are on a similar path and I relate to much of what you said. Although, you are a few steps ahead of me parenting kids older than my own. 

4 hours ago, hepatica said:

The Dyslexic Advantage

I also read the dyslexic advantage. My kid is not dyslexic but I loved the approach to mindset. Dyslexia is a clustering of strengths and weaknesses… not just a deficit. 
 

 

4 hours ago, hepatica said:

Raising a Rare Girl,

 

I just read this recently. Because I’ve read a lot of disability parenting stories, a lot of it seemed familiar. But, I did like the aspect that the child had a lesser known diagnosis and how that affects how they communicate and relate to other people. 

 

4 hours ago, hepatica said:

2E kids can be completely lost and invisible without constant advocacy. I also found the invisibility of dyslexia to be a real challenge. It showed up as struggle only in certain settings. Students can seem super intelligent in class discussions etc and that leads teachers to think their challenges are not real, that they are just lazy or uninterested. I felt, all the time, as a parent that I had to be the one educating all the teachers my kids came in contact with. 

This is where I’m at right now. It’s a particular situation that I don’t find many relate to.

I would love to read your book when you finish. I hope you will consider touching on the 2e/invisibility pieces of your experience, I don’t think that there’s enough out in the world.

Another piece I’m getting my head around is that I am told my son’s disabilities can be overcome… one of them has the possibility of improving with therapy/training and time/maturity. The other one most of the experts think he’ll be able to work around/compensate for. So, he is disabled, but maybe not always. Or maybe always. Or always disabled but efficiently working around? Or approaching things completely differently because he must. You can see why I am exploring mindset/values, I don’t quite have my head around it. 

[SFisher]

15 hours ago, Lecka said:

 

Maybe ADHD?

 

My son is gifted, has APDs, written expression disorder, deficits in working memory and writing fluency. He presents as mostly gifted and the disabilities as mostly masked/compensated/invisible. 

I’m not likely to find a lot of resources with the same combo of diagnoses… but would relate to 2e, gifted, writing disabilities that are not motor related, auditory processing differences, invisible/compensated/masked disabilities, kids who’s disabilities are interpreted as defiance/bad behavior.

[Lecka]

I think you would get some of that from ADHD materials.  

[Lecka]

The most common 2e materials seem to be focused on ADHD or autism, and they are both very broad.  They market more broadly because that’s where the numbers are, I think.  

[Lecka]

I think ADHD and autism materials both could have overlapping issues with what you are interested in, as well, they are both just huge with kids having overlapping issues.

 

But I don’t think there’s a lot out there for learning disorders specifically — but then ADHD or autism materials can include learning disorders because they are so common.

 

Either one might address the issue of “not trying on purpose” or “not behaving on purpose.”  

[hepatica]

3 hours ago, SFisher said:

My son is gifted, has APDs, written expression disorder, deficits in working memory and writing fluency. He presents as mostly gifted and the disabilities as mostly masked/compensated/invisible. 

I’m not likely to find a lot of resources with the same combo of diagnoses… but would relate to 2e, gifted, writing disabilities that are not motor related, auditory processing differences, invisible/compensated/masked disabilities, kids who’s disabilities are interpreted as defiance/bad behavior.

I wrote about my middle daughter a bit here (towards the middle of the essay). She has written expression difficulties that are not motor related (she is in art school now, excelling in ceramics and printmaking so definitely not a motor issue). She really struggled in high school with the comments teachers would make about her handwriting as carelessness. She is 20 now and it still brings tears to her eyes. Definitely a 2E kid. 

I expect there are a good number of these kids. They read as bright, but lazy or disinterested, performing in the average range, which, given their cognitive capacity, is significantly underperforming. Without constant advocacy, they don't get the support they need. 

[SFisher]

15 minutes ago, hepatica said:

I expect there are a good number of these kids.

Thanks for sharing what you wrote.

In response to your writing: My current pet peeve is when adults, teachers, therapists tell my kid to “focus”. And it happens a lot. I even catch myself saying it at times although I know it’s an incorrect reaction (derogatory? disrespectful?) to what is really happening. It’s like engrained in my subconscious that if you aren’t able to do something it’s because you’re not focused. Working at weeding that out of my system. 

I agree that there are a lot of 2e kids out there. Probably a lot of them are not diagnosed. And there’s an infinite number of combinations of gifts/disabilities. I am trying to get at the fact that I don’t need to find examples that exactly match his profile to gain useful approaches to mindset…

 

[SFisher]

1 hour ago, Lecka said:

 

I think ADHD and autism materials both could have overlapping issues with what you are interested in, as well, they are both just huge with kids having overlapping issues.

 

Thank you.

[prairiewindmomma]

https://brightandquirky.com/starthere/

I wonder if this would be helpful for you. It's all for 2E kids.   I don't have a membership to her coaching program, but I listened to her free summit for years and years. Not every session was helpful for me, but she offers such a smorgasbord of presenters during her conference days that there were often many, many helpful talks for me. 

2023 was all about screens. https://brightandquirky.com/screen-time-mental-health-summit-evergreen/  I actually skipped that one. 

Look at the list of speakers for 2022.  Most of the speaker bios list the books they've written. https://brightandquirky.com/summit-2022/  I would say that these people have shaped a lot about how I think about my 2E kids.  So far, I'm hitting 4/5 on neurodiversity of some sort, and one of the things that I've had to reckon with is how these patterns are in our own family histories and how those have shaped us. Like, at some point, I needed to take a wide lens view of what was going on and really be the parent that my kid needed rather than try to shape my kid into a mold.  A therapist telling my kid to focus would irritate me.  A therapist helping my kid realize when they've disengaged so that they can monitor themselves and realize when they need to tune back in so that they can self regulate is helpful.  It sounds like there may be a gap there---you're finding people trying to put on external controls rather than empowering your kid to manage themselves.

 

[Lecka]

There is a lot out there for teaching self-monitoring of executive functioning skills….

Executive function skills (like focus) are a big theme for ADHD and for autism….. this is the kind of thing where things overlap and executive functioning is independent of ADHD and autism, yet there is tons of stuff on it wrt ADHD and autism…. And some by itself, too, but there just seems to be more of a market for ADHD and autism.  
 

I am out of date on current resources, but it’s so important to teach kids what it means to focus (what are the things that go with focusing) and how to do it on their own….

 

In autism they will tell you a verbal prompt (aka verbally saying to do something) is the worst way to teach kids to do something, it can even lead to waiting around to be given the prompt!  It can promote dependence.  This can be an issue in autism so there are tons of strategies to try to avoid learned helplessness caused by overhelping (aka helping in ways that turn out not to promote independence).  

 

Edit:  other prompts can be visual, written, or something like making a hand motion or tapping on a table… it can also help avoid getting too wordy or being distracting in of itself.  “How not to be overstimulating” is a big theme in autism but it’s really broad to a lot of kids, too.  

Edited March 7 by Lecka

[prairiewindmomma]

Pondering this a bit, as I reflect over my parenting journey….. I think one of the things I have learned is to think kid-first. I started along this parenting journey thinking parenting was just super hard. Then I realized that other parents didnt have it as hard, and I began to see differences between my kids and theirs which led to testing and diagnoses and therapies and this whole thing that kind of took all of my attention and energy for a long time. We kind of hit this crescendo around 2015-2017 and I ended up starting to put kids into school because I was just burned out and everyone was struggling. Coming out of that dumpster fire, I realized a few things:

1. Be mom first. In all of the hats we have to wear, no one else can be mom. Lots of people can be teachers or therapists. Our kids fundamentally must be loved and accepted by mom, and they need to feel that deeply.

2. Dont forget their strengths. We spend so much time in remediation that we can lose sight of the whole person.

3. Neurodiversity has some basis in functional brain differences. Not everything is fixable—and I would argue especially that is true around adhd. Building up executive functioning skills helps compensate, meds help function in some areas, but there are real and lifelong differences and anyone who tells you otherwise is lying. My kids have made real and lasting progress in a lot of academic performance areas and in a lot of interpersonal and intrapersonal skills but they are never going to be not 2E. 
 

4. i made a list of functional goals for my kids (which included some academic things) way back in 2008(?). I was just going off of the list for my kid who is about to graduate. We hit 18/20, and should be at 19/20 in the next few months. Dh and I were guided in a lot of decision making by those goals, and it helped us pace a lot of work we needed to do with our kids. We looked at what our kids need for adult life. So often we get caught up in the little details of academics without the big picture of what adult life will require of them. I needed to let go of my ego and my wants and refocus. This kid isnt going to college, and is going into the trades instead (despite a high high school gpa) and it causes me personal anxiety because of my own hangups. He’s ready to take charge of his life though, and it’s time for me to continue to step back. I started stepping back a while ago—and we all should—our kids should take on as much responsibility as they are able to, no matter their abilities, because we honor them as individuals with agency.

[SFisher]

1 hour ago, Lecka said:

other prompts can be visual, written, or something like making a hand motion or tapping on a table

In many ways my son is focused… but in certain situations his auditory processing makes him appear that he isn’t listening. He’s listening, it takes extra effort to process what is said and hold on to the info.

We know reading and visual prompts work for my son. I need to work on advocating for adults around him to use these. He comprehends at an advanced level and speaks well. That combo of strengths/weaknesses is confusing for people communicating with him. I have to learn how/when/how much to advocate for him and also teach him to do it himself. 

[prairiewindmomma]

FWIW, if he is under 12, I would take on the behavior discussion with all regular teachers, therapy providers, etc. One of my mantras is "Seek first to educate"---I share the relevant diagnosis, what my kid experiences, how behaviors can be misinterpreted, etc.  If I see another flareup, I ask questions like, "I'm curious, I saw an interaction in which xyz happened. What was your take on that?"  I'm not defensive, and sometimes I have learned helpful things from that, but I really don't tolerate providers shaping my kid's worldview that they are behaving badly when the problem is with the provider, iykwim.  My kid shouldn't internalize that they are a bad person who doesn't listen when the problem is that their ears and brain don't work together.  It's like yelling at a kid for not following the directions on the chalkboard when they can't see the dang chalkboard. It's stupid, and harmful.

The vast majority of kids seek to do the best they can in the circumstances that they are in. If something has gone wrong with younger kids, it's because they don't have enough of the right supports in place to help the succeed.  

[SFisher]

1 hour ago, prairiewindmomma said:

I realized a few things

This is really excellent. Thanks for sharing.

I’d be curious what types of goals you had on your functional goals list?

[SFisher]

1 hour ago, prairiewindmomma said:

FWIW, if he is under 12, I would take on the behavior discussion with all regular teachers, therapy providers, etc.

Thank you. The APDs are a new diagnosis and he has been criticized/disciplined for behavior since he was 3. I’m sure we misinterpreted behavior at home some of the time, but the behavioral criticism/punishment at school has perpetually been too much and was crushing him. I put the kibosh on punishing him for not writing/writing slowly early this school year via diagnosis/advocacy/504. Now my brain is putting together past experiences and the APDs. And figuring out what people need to know. It’s not easy to explain. And it presents very subtly b/c most of the time he can compensate. Very often interpreted as not paying attention, not caring, or defiance. 

 

1 hour ago, prairiewindmomma said:

My kid shouldn't internalize that they are a bad person

This is exactly the problem I’ve been trying to address since he was 3. Even if you have no idea why a person is behaving a certain way, there’s no reason to make them feel like they are “bad”.

[prairiewindmomma]

46 minutes ago, SFisher said:

This is really excellent. Thanks for sharing.

I’d be curious what types of goals you had on your functional goals list?

Here are a couple of them, with the subgoals around those:

 

Around the goal "to manage one's own medical life"

1. being able to fill out an intake form including understanding what it meant

2.  being able to advocate for oneself in a medical appointment given ones medical situation

3. managing medicine refills, and filling out a pillbox appropriately (honestly, still a work in progress with a couple of mine--the refill part)

4. keeping track of one's own medical history (I highly recommend a phone list of medicines and doses along with the doctor who assigned them if their medical life is complicated)

5. booking appointments (ie learning how to use the MyChart portal since phones are challenging for my kid with APD)

 

Around "prepare inexpensive meals that sustain health and nutrition"

1. learning a variety of healthy and inexpensive recipes

2. learning how to shop effectively (pick produce, calculate price per oz, etc.)

3. learning how to meal plan based around what they will actually make and eat in a nutritious way--figuring out a grocery list from that

 

None of these are one and done things.  We have to ingrain the behaviors deeply down enough so that when they are stressed and tired the default is to be able to do the thing.  The thing about adult life is that it seems to hit all at once, and you are managing so many different tasks at once.  For 2E kids, it's so easy for things to fall apart in an area and just not happen....you begin early and often and then keep building.

 

 

 

[Lecka]

My eyes have really been opened… there is very little you have to hand write.  
 

I am volunteering with a refugee family…. The wife was signing medical forms with a plus sign before she learned to write her name.  
 

Earlier this week I was at an appointment with her and in the waiting room, a man said he forgot his eyeglasses and office staff read him the form and filled it out for him. 
 

I have been having her fill out what she can on medical forms even if it’s so slow…. 9/10 when she hasn’t filled out very much of the form, they don’t care if she finishes it or not.  
 

So do I want people to be able to fill out forms?  Absolutely.  But I’m a lot less worried now.  I used to say “what if someone’s hand was in a cast, and they couldn’t write…”

 

My son with poor handwriting is one who is good at typing, even though it took him longer to learn to type.  Once he learned to type, it solved 95% of his problems.  

[Lecka]

I agree all of the medical advocacy and adulting are so important!!!!!

[prairiewindmomma]

A good chunk of the population is either illiterate or functionally illiterate. You can get by almost everywhere with a signature. That said, when you are complicated medically you need to be able to do more or have an advocate with you.

My state offers full medical translation services because it is so important. They meet you at the front desk for your appointment so they can help with intake forms.

[Lecka]

I agree about needing to be able to handle complicated medical issues or taking an advocate.

I have one who is still working on this, and in this case it’s part of a whole situation where it wouldn’t be great for him to move away from family support right now.  
 

But, he doesn’t want to move away from family support.  
 

It definitely doesn’t just happen, he’s so much better but “provide a succinct summary of any relevant information that I would need to know, since your last appointment” is an expectation and it’s not easy.  
 

Our state has got medical translation required by law…. In practice the university medical system and the hospital system have it.  A lot of specialists don’t.  The primary care I take the volunteer family to, does have it.

 

But the reality here is that not every medical office has it even though it’s required…. 
 

They also seriously do not have in-person translation, it’s either by phone or it’s a video call on an iPad…..  In person would be so much better.  

 

 

 

[Lecka]

I think the medical stuff is the most complicated when there’s a situation where everything points to someone going away to college, but they aren’t managing their medical stuff and need a lot of help…. I think then it’s not an option to say “just don’t go away yet.”  
 

That’s not even getting into, a parent thinks something is important and the young person doesn’t care.  I have definitely heard that taking ownership during the earlier teen years and into high school is supposed to really help with that.

 

Neither of those are particularly my situation, though, it turns into a metric where it’s just not being met in our situation, but turns out to be okay, but we are working on it.  
 

But I don’t think it’s a metric somebody can just not meet and — act like it’s no big deal and go on with other plans like there’s not this elephant in the room.  

[Lecka]

I actually think it was a mistake (unrealistic) for me to try to push a child in the area of medical appointments and prescription refills, with an arbitrary “do it by age 18,” but it’s turned out he accepts my support.  
 

But I think it’s an important issue, because it either limits how independent someone can be, or puts them at huge risk of receiving inadequate medical care.  

[Lecka]

I am probably seeming cryptic — last year I had a 17yo receive a medical diagnosis 3 months before turning 18, in the Spring of his Senior year.  
 

A year later we are still figuring it out to some extent, and it took me about 6 months to feel like I knew the kind of information to look for and consider relevant, let alone my son.  
 

So it’s a different situation than having more time to hand it over, but things are going well.  
 

Edit:  on the other hand he has had a high level of buy-in and ownership and speaking for himself, from day 1, because of his age.  He has been treated as someone about to turn 18, or already 18, since day 1.  

Edited March 8 by Lecka

[prairiewindmomma]

In my state, once 15, kids have their own medical rights to seek care and rx. My access to their medical portal is shut off and I either have to have them sign release forms of go at it entirely on their own. Even insurance EOB info is redacted. 
 

You’re right, it’s an issue you cant force, and I have a different kid who still needs a lot of support, but it’s something we actively work on always. 

[kbutton]

23 hours ago, SFisher said:

I am trying to get at the fact that I don’t need to find examples that exactly match his profile to gain useful approaches to mindset…

Focusing on 2e helped me understand the problem of kids getting easily dismissed and all the other trappings of 2e issues. Once I had an idea what 2e this or 2e that could look like though, I benefitted greatly by knowing more about what those same issues looked like in the general population. Without knowing how some issues looked “unmasked” as an extrapolation of what my kids’ issues would be if they had more difficult presentations, my kids both would’ve flown under the radar for language issues, and all of their problems would’ve been blamed on ADHD or some other issue. Language issues are assumed to be obvious early or not present. It’s only recently that you can even get adequate testing for older elementary kids and teens. It’s considered so fundamental that kids would not be able to do xyz without abc in place. Well, my kids were all, “hold my lollipop and watch this.” I found out that many kids have splinter skills, but 2e kids kind of specialize in them (as do kids who might have lower IQs but really good life skills—those kids have many of the same identification and service problems as 2e kids.

On a related note, I found it super helpful to know more about the history of special education and lack thereof. There are course corrections taking place in education that make more sense in that overall trajectory. It also helps conceptualize how differences have been viewed over time. For example, dual diagnosis/multiple diagnosis was not allowed until relatively recently. Difficulties were subsumed under the most comprehensive condition. That’s such a huge difference now! Who got services when and why feeds into so many things currently. Some of my info on this is from podcasts, some from my education training (I took all the secondary Ed classes in the sequence to be a teacher but changed majors prior to student teaching), and some is from interacting with informative professionals (some 2e themselves) that I know via family connections or as my kids’ tutors and intervention specialists. 

One principal I try to follow is not throwing out the baby with the bath water—kids with exceptionalities can still be stinkers, and sometimes it’s mixed up being a stinker and lacking a skill. Also, many supports can be a crutch instead of scaffolding if it’s being used as a way to not have to remediate something that could be remediated, or if it’s used in isolation without proper skills in place. Or sometimes, kids do have major issues with writing but still do better with a concrete touchable planner! Sometimes needs contradict each other.

17 hours ago, SFisher said:

. And it presents very subtly b/c most of the time he can compensate. Very often interpreted as not paying attention, not caring, or defiance. 

We found that much was dismissed as ADHD, and even once my older son’s language issue was identified, the very specialist that pointed it out started intervention at too high of a level  (2e hits again), and the resulting chaos was labeled as a behavior issue. Fun times!

17 hours ago, prairiewindmomma said:

  We have to ingrain the behaviors deeply down enough so that when they are stressed and tired the default is to be able to do the thing.  The thing about adult life is that it seems to hit all at once, and you are managing so many different tasks at once.  For 2E kids, it's so easy for things to fall apart in an area and just not happen....you begin early and often and then keep building.

Along these lines, it’s so easy to put the cart before the horse by accident.

I think it is important to know what can be remediated and should be remediated vs. accommodated, and that is a hard balance. Sometimes you take turns doing both for the same skill as the kid matures and has uneven skills with changing demands.

[prairiewindmomma]

Yes, the jaggedness of the 2E sword…..rarely do you get synchronous development. We see a pattern in some of ours where we get regression in an area when new skills are developing in a different area. The remediation/accommodation balance constantly changes!!

[SFisher]

15 minutes ago, kbutton said:

We found that much was dismissed as ADHD

This is a perpetual thorn in my side.

Have any favorite 2e resources to share? I’ve consumed quite a few, I think I have the broader concepts but am looking for more nuance now. 

[kbutton]

48 minutes ago, SFisher said:

This is a perpetual thorn in my side.

Have any favorite 2e resources to share? I’ve consumed quite a few, I think I have the broader concepts but am looking for more nuance now. 

Not much that is recent. I also look more for articles, and I’ve moved on to college preparedness stuff—FB groups, webinars on preparing for college with a disability, etc. 

[kbutton]

Another mindset thing…the comparison game is a trap; however, it can be a good way to demonstrate to professionals why you are concerned. Gifted kids are standard issue in my extended family; I can honestly describe what non-2e gifted kids look like to drive a point home. It comes in handy when I hear stuff like, “well, all boys that age…” No ma’am. Not all boys that age. Here is your appropriate comparison group of you’re going to insist that he doesn’t need xyz support. You can’t cherry pick. Either he’s not gifted (and they have reams of testing), or he is affected by his disabilities. You can’t straddle that fence without some splinters.

[prairiewindmomma]

@kbutton, if you haven't come across it yet, look at the disability resource offices of the schools your kid is looking at and see if they have a specific list of cognitive and academic testing that they accept.  Ours is requiring a recent (within past 3 years) evaluation, and they have a list of tests that they accept as demonstrative in addition to a medical statement from the primary care doctor.   Since it can take months to get in on a waitlist for testing in some areas, you'll need to plan ahead.

I highly recommend doing recent testing before doing College Board accommodations also if your kid isn't on a current IEP/504.  The wall of documentation seems to be higher for mom submitting accommodations rather than a school doing it--I have kids in public school and others in homeschool and it's wild to compare side by side.

 

[kbutton]

51 minutes ago, prairiewindmomma said:

@kbutton, if you haven't come across it yet, look at the disability resource offices of the schools your kid is looking at and see if they have a specific list of cognitive and academic testing that they accept.  Ours is requiring a recent (within past 3 years) evaluation, and they have a list of tests that they accept as demonstrative in addition to a medical statement from the primary care doctor.   Since it can take months to get in on a waitlist for testing in some areas, you'll need to plan ahead.

I highly recommend doing recent testing before doing College Board accommodations also if your kid isn't on a current IEP/504.  The wall of documentation seems to be higher for mom submitting accommodations rather than a school doing it--I have kids in public school and others in homeschool and it's wild to compare side by side.

 

Thanks!!!

Mine is a sophomore in a private school with an IEP (leading to a scholarship) through our local district. He’s getting an updated eval this month from a private educational psychologist. I’m hoping this will last for college as his ETR doesn’t actually expire until fall, but the local career center wants it tucked up before he transfers in the fall, and we are considering a gap year.

He received College Board accommodations last fall submitted by his private school (in a big hurry because I didn’t know they didn’t automatically do it for IEP students and they didn’t put it in their list of parent to-do’s) prior to taking the PSAT for practice. The local public school district administers the ACT, and even as a homeschooler, the district submitted accommodations for my older son who was homeschooled but had an IEP with them.

Do you know if college board accommodations have to be re-submitted every time you test?

[Lecka]

On the issue of things being dismissed, I think “what is the goal” is really important.

 

Originally I was more justice-minded and wanted what was fair.

 

I would think about “what if this issue was not present” and make that my standard.

 

Now it’s more like, are things working out.  Actually working out — not at the expense of self-esteem.  
 

But I also think there’s an opportunity for kids to come up with their own solutions and work-arounds, or just the way they want to manage things, and I have got a lot more respect for that now.  
 

I have also found out “my hill to die on” may not be my child’s hill to die on.  I have to advocate cooperatively with them or we will not be on the same page.  To a great extent I have to get on their page.  

[SFisher]

6 minutes ago, Lecka said:

I also think there’s an opportunity for kids to come up with their own solutions and work-arounds

My kid is 10 and new to having a 504. He’s really awesome about coming home and telling me if something seemed off/not supportive, then I can encourage him to talk to the teacher or I can step in if needed. I’m pretty happy about this awareness because I think he’ll be able to self advocate more and more.

He has written expression disorder and a writing fluency deficit and approaches writing so differently. He had persistent d/b reversals, and started using cursive “b”s to keep them straight. So his handwriting is all print with cursive “b”s. He figured out how to turn on all of the spelling/grammar support on Google docs and knows how to use keyboard commands to check grammar recommendations and voice to text (figured out while at school). He also writes out of sequence… so he might write all of the topic sentences in an essay first. It’s like he sees the big picture first and slides all the pieces into the framework. It’s very out of the box. I can only imagine how this will evolve. 

[PeterPan]

On 3/7/2024 at 3:49 PM, prairiewindmomma said:

Then I realized that other parents didnt have it as hard

Truth.

On 3/7/2024 at 8:05 PM, SFisher said:

the behavioral criticism/punishment at school has perpetually been too much and was crushing him

And he's still enrolled there?

On 3/7/2024 at 10:24 AM, SFisher said:

I’m not likely to find a lot of resources with the same combo of diagnoses… but would relate to 2e, gifted, writing disabilities that are not motor related, auditory processing differences, invisible/compensated/masked disabilities, kids who’s disabilities are interpreted as defiance/bad behavior.

You're going to go in circles trying to look for a blog, a role model, whatever. All these people writing books are writing THEIR stories, which aren't YOUR story. 

So I agree with @prairiewindmomma. Just look at your kid. That's it. Now I do like professional trainings to know what I should be advocating for, but in general just look at your child. 

You stop and you ask

-what would it take to make this good?

-what would it take to make my dc NORMAL in their world?

Think about that. What if disability did not exist (because it's just a Sneetches term anyway) and what if the things they need to do were NORMAL? What if we just normalized it and said oh yeah that's just the way he does things (using assistive tech, using this or that). What if we removed all the restraints that said how schooling or high school or whatever "has" to be done and did it some totally other way? 

A number of years ago a brave mom from this board told me to come visit her and told me about her dc. She told me cautionary things and I realized that no matter what, no matter how hard I tried, the outcome was probably going to be very rough. It's just the reality of the mix. And I decided, and this is just me, that if the outcome was going to be very rough no matter what, that I might as well do something SO out of the box, SO different, SO normalizing to his world, SO empowering, SO positive, that if ALL THE OTHER THINGS WENT WRONG, at least something was right. At least we'd have mental health. At least we'd have a positive outlook. 

There are a lot of things I can't change, but I can change:

-chemistry

-access to real life experiences

-quality of intervention

-time to do things that need more time

-negative voices

There's a book by Snow on Teaching Your Child with Love and Skill and this video by the lady from Signing Time.

 

[prairiewindmomma]

On 3/8/2024 at 3:38 PM, kbutton said:

Thanks!!!

Mine is a sophomore in a private school with an IEP (leading to a scholarship) through our local district. He’s getting an updated eval this month from a private educational psychologist. I’m hoping this will last for college as his ETR doesn’t actually expire until fall, but the local career center wants it tucked up before he transfers in the fall, and we are considering a gap year.

He received College Board accommodations last fall submitted by his private school (in a big hurry because I didn’t know they didn’t automatically do it for IEP students and they didn’t put it in their list of parent to-do’s) prior to taking the PSAT for practice. The local public school district administers the ACT, and even as a homeschooler, the district submitted accommodations for my older son who was homeschooled but had an IEP with them.

Do you know if college board accommodations have to be re-submitted every time you test?

The details are in the letter you received listing the accommodations. It lists what the accommodations are per test and how to receive them. Note the language re: contacting the test admistrator. My kid brings his documentation letter with him even when prior arrangements have been made because it can be chaotic contacting who is “in charge” that day.

[SFisher]

…

Edited March 10 by SFisher

[hepatica]

I do not think it is a useless to try and find resources that share a similar story. Sometimes it is impossible to look only at your own kid, because we as parents don't know everything we need to know. We have to learn too. Sometimes, when you have these kids whose struggles are invisible (meaning we cannot easily see the cognitive jaggedness that is creating their struggles) you can begin to think you are crazy. You know your kid. You know how bright and curious and engaging they are. Yet you are trying to convince their teachers that their refusals are the result of neurobiological differences and not bad attitude or bad behavior or lack of effort. Even today, most teachers do not understand this. And, as parents, we worry. And we question. And we struggle to understand as well. Having resources from people have experienced similar struggles is very reassuring. 2E kids get overlooked and labeled as lazy or disinterested or unfocused all the time! The biggest mindset shift for me was to always think, "what kind of education does my really smart child deserve?" "What kind of education does my dyslexic kid deserve?" If the school has never had a kid with accommodations take an AP course that is just evidence that they are missing these kids, not evidence that it can't be done. 

[Lecka]

(in a public school)
 

I felt like that with getting a typing accommodation for AP testing…. It’s not that it was hard, but it just seemed like they barely thought it came up.

The teachers told me very early in the year, they could let him type in class but he would have to have a 504 plan (is this the right number lol) and contact the counselor very early in the year.  And we actually had testing saying dysgraphia, because we had taken him for private testing back in 4th grade, that was enough for the counselor (plus writing samples and teachers saying he had trouble in class if they didn’t let him type when they were supposed to be writing by hand).  
 

I was definitely feeling like — how many kids got missed on this?

 

 

Edited March 12 by Lecka

[SFisher]

I just read this article about pathology vs neurodivergence paradigms in respect to gifted/2e kids. This is the sort of thing I want to read more of in regard to parenting mindset:

https://www.giftedlearninglab.com/neurodiversity 

[hepatica]

36 minutes ago, SFisher said:

I just read this article about pathology vs neurodivergence paradigms in respect to gifted/2e kids. This is the sort of thing I want to read more of in regard to parenting mindset:

https://www.giftedlearninglab.com/neurodiversity 

This is an excellent article! Thank you!

Here's an interesting philosophical/social theory take on the neurodiversity paradigm that argues dyslexia only exists because of the normative practices and assumptions of literacy (what he call "lexism).

I also wrote about this yesterday in the context of the increasing move to RTI in schools and the move away from cognitive testing in the definition of dyslexia.

My children (eventually) found it very empowering to think of their dyslexia as a sort of superpower (Percy Jackson style). There is a recent strand of push back against this neurodiversity as empowering movement which I find troubling.