Gifted Issues Discussion homepage Forums Twice Exceptional When did this happen for your kid?

When did your 2e kid start saying

"This [task/assignment/situation] is [difficult/impossible] because of my [insert diagnosis here]"

Instead of

"I [can't/don't want to] do this [task/assignment/situation] because it is [boring/too hard/too easy/stupid]"

Just curious.

During first grade DD developed migraines so we ended up doing a lot of neurological testing. It was amazing to me that every single doctor - both in patient and out patient - insisted on talking to us about all of this with her in the room. I would hand her my iPhone to play with but of course she still heard every word. After this instead of just saying "my hand hurts" while writing she would say "I have a fine motor deficit" or even "my fine motor deficit is making my hand hurt."

During second grade she has grasped that she is "crazy smart" (our words) and she "learns differently". When she recently missed a day of school to spend the day at the 2E school we are trying to get her placed at her friends asked where she had been. Apparently she said to them "Well, you know how I learn differently." "Oh yeah!" "Well my parents found a school for kids that learn the way that I need to learn." "Great!" (We told her to leave out the "crazy smart" part when talking to the other kids because they could interpret it as an insult. She got that 100% too.)

Interestingly as she started internalizing "I learn differently" more her headaches, stomach aches and other somatic complaints dramatically decreased.

Pemberley- Fantastic!

Immediately upon diagnosis at 6. He would read things and try to overhear. He wanted answers as much as we did and he is very open when adults ask him to do something or criticize him when he can't do what they ask. He's really an incredible little advocate for himself. Sometimes I think he's more brave and unashamed than I am. Never would have intentionally put him in that spot but he feels empowered by diagnosis and explains things with simple clarity to the dumbfounded adults.

Spin off questions -

So it sounds like getting a diagnosis helped with self advocacy.

How did you handle the pre-diagnosis time?

I have about 4 months to go. At this point I would take "my hand hurts" over "I don't like this". When I ask the follow up question "why?", I might get "my hand hurts" or "I think this is boring and want to play". All of which are probably true.

Did you talk about what you think is going on? I have been hesitant to do that in case I am wrong.

Like putting out fires. :-/ One improv after another.


Actually, we did develop a fairly firm family strategy about this. I wouldn't use a diagnostic name unless one has been offered AND you are convinced it fits. But we do name/label all difficulties, referring mainly to how we think it feels. Like this:

"I see that this writing job is feeling difficult for you right now. Let's make a plan. Would it be easier to do it for 5 minutes, take a break for 3, and so on till it's done?"

"Right now you're feeling frustrated. Let's take a moment and take a breath."

"This homework doesn't feel like fun to you; but I think you'll be able to get it done very soon, and maybe you'll want to do X afterward."

"I think you're feeling dissatisfied. What don't you like right now?"

"Does that hurt?"

HTH,
DeeDee

KJP - can you refresh my memory as to age and issues your child is dealing with?

We have long discussed things with DD in terms of people being different. We live in an area with every conceivable religion, culture, nationality, lifestyle, etc. From the time she was little we explained "Different people believe different things and that's ok" to explain differences in dress, holidays, etc. That was a natural lead in to "Different people are good at/have trouble with different things." DH used himself as an example and told her "People like you and me have to learn things in a different way." He also explained "Most teachers go to school to learn to teach a certain way and that's fine for most kids. But people like you and me have to learn things differently. Luckily some teachers, like Mrs. Wonderful Spec Ed teacher, go to school to learn how to teach the way that you and I need to learn. You're so lucky to have her. When I was in school I didn't have someone like Mrs. Wonderful Spec Ed teacher so I had to figure it all out myself." This explanation has helped enormously! I can't emphasize enough what a difference it has made.

Last year I posted here about DD and I watching the Disney channel when one of their young actresses, Bella Thorne, came on doing a PSA about having dyslexia. I was terrified about how DD would react but she was thrilled. That was the first time she realized that there were other people experiencing the same thing. Prior to that I was afraid to label or discuss much about the LD issues. As she gets older we will get into more specifics but for now the "learns differently" seems to be enough.

I'm kind of anti-diagnosis at the moment as the school is seeing DS as being remedial because of his ADHD. So, when he daydreams because he's bored, they think he's zoning out because of his ADHD. (Sometimes he does, but sometimes he's actually BORED). What do they do? Make the work easier, which disengages him even further. It SUCKS. I regret disclosing the diagnosis.

Pem, He is five. At this point my theory is that he is a gifted dyslexic with a connective tissue disorder and a strong creative streak.

The reasons I think this:

Gifted - 99.9+ WPPSI last year

Dyslexic - FIL is dyslexic, numerous letter and number reversals and inversions, will read "was" as "saw", will read "seat" as "chair", "hop" as "jump", etc. He has an assessment with the Eides, authors of the Dyslexic Advantage in Oct.

Connective Tissue Disorder - specifically Ehlers Danlos Syndrome (EDS). I have it. He has a 50% chance of getting it from me. He has many symptoms. My geneticist has referred him to a geneticist at our local children's hospital. He'll be seen in Sept. EDS could be causing the dysgraphia, dyspraxia, SPD type symptoms for which he has been in OT the last year.

The odd silver lining with the EDS is that the school accommodations are similar to dyslexia. Extra time, frequent breaks to stretch and walk around, a scribe, oral exams, etc. are all listed by the national foundation as accommodations to consider.

As I understand it, working with schools on accommodations for a gifted dyslexic can be a problem. Especially if the student is meeting the school's standard but not their own potential. I have even heard of some schools refusing to admit dyslexia exists.

EDS is very rare but real and a demonstration of the impact is shocking. EDSers were the contortionists and side show freaks of old time carnivals. I think a demonstration of the following would convince even the most skeptical school admin. that accomodations were necessary:

easily dislocate every finger
lay his fingers along the inside of his forearm (try it, I think most people would have to break a wrist to do this)
rotate his hands 360 degrees (try right palm flat on table and keep turning clockwise until the hand is back where it started (arm will look like wrung towel))
hyper extend his elbows
maybe dislocate his shoulders

That just covers the parts that might be involved in writing.

Before anyone thinks I am torturing the poor kid, this is how these demos usually go:

DS: Mom, can you do this?
Me: Where is your elbow? Bend it for a sec so I can see which way to go. Yep I can do it.
DS: Can not bendy people do it?
Me: Probably not. Lets ask dad.
DH: What?! (Shielding eyes) No, no, no that is painful to see and very not normal. Please everyone put their limbs back in their normal positions.
DS and Me: (shrug and laugh)

It doesn't hurt. I discourage him from testing his limits too often but every little kid is curious about their body and his is just extra interesting.

Pretty crazy stuff huh?

KJP, I am waiting for the geneticist appt to have the children checked for eds hyper mobility type and my diagnosis changed from BJHS to EDS. I thought I already was diagnosed type3, but apparently not, and apparently by the wrong sort of dr anyway, I have all the other problems that suggest EDS over BJHS.

We are not as bendy as you, but my 6 yr old had to wear a custom made brace for learning handwriting, still needs big chunky pencil grips (so do I) and will need to move on to typing very young. She had a lot of reversals too, in reading and writing, but they've resolved pretty easily and I really don't think of her as dyslexic, maybe because I have a gifted child that took 3 years to learn the alphabet....

We are having real problems both with figuring out ourselves, let alone getting school to have a clue, what to do about my 11yr old with regards to things like class bush walking excursions, endurance swims in swimming class (once a term instead of normal lessons), teacher encouraging her to try out for regional soccer club (she blatantly doesn't meet the criteria, but even if she did we'd never want her to play a sport like that at a high level and risk a bad injury young)... It is very hard figure out the right line between not wanting to underestimate or discourage a "can do" attitude v. setting her up for failure, injury, etc. and the common sense approach of "walk until you've had enough and the call to be picked up" results in her standing out like even more of a sore thumb....

The kids with overt disabilities get cheered on by the whole school as they do their best at sports day, as it's so obviously impressive for a child with a problem walking to do what they can. Looking normal, being able to do stuff some of the time, but not others, it's just a recipe for being teased.

Wow MumOfThree, sorry your family is dealing with this too.

I guess I am looking for advice on how to help him become a successful self-advocate and not an excuse making whiner who thinks he can get out of doing something he doesn't WANT to do because of his disabilities.

I think you acknowledge that the struggle is real (even if it's in his mind, it's real). But also say when a task is required, vs. when it's optional, and why. We distinguish "gotta-dos" from "wanna-dos."

Disability is part of the regular conversation around here; we talk about why something is extra hard, as well as why it's worth the effort.

We also tell our kids, "In this family, you do the right thing, even when it's hard." That doesn't leave much room for excuses.

DeeDee

KJP, I think the answer to this question is going to be very child-dependent,mas well as a function of how far along in the journey you are re understanding exactly what's going on with your child when they have an exceptionality. It's also going to change with age simply because mst children, challenged or not, become more able to describe what they are feeling as they get a bit older. It's a little bit like learning how to talk - until our children have words, they cry or tug on it leg or stomp their foot or whatever to get our attention and to attempt to communicate what they feel or need. Once they have words it takes a few years for them to put together the pieces of understanding what words describe how they feel as well as a few years of learning what communication works best. When my dysgraphic ds was the same age as your ds he used to stomp, scream, bite his teeth, tear up his papers and throw them across the room. When my totally nt dd was your ds age she whined when something was wrong, but she didn't launch into an explanation of what was wrong. If I could guesstimate based on my small sample of a family, I'd guess that within the next year you'll see your ds become more clearly expressive of what he's feeling -if his hand hurts when he writes he may start to tell you that for instance.

Once you have a diagnosis, you can start explaining the why to him, as well as start to ask him specific questions about how it's impacting him that you might not be thinking about now. You'll both become more aware of how he's feeling and as. You lead, he'll see the example of how to explain. Role-playing responses also seemed to work really we'll for kids I knew when they were between 7-10 years old, so you could give him a response then practice it with him when he's not stressed out so that it will eventually become automatic when he is stressed out.

If I had to answer this question for my ds, the first answer would be at it changes - he was diagnosed at 8, and once I knew what was up and explained it to him, his outbursts etc disappeared, but he still refused to do work he wasn't able to do and I had to ask him specific questions to understand If refusal to do work was dysgraphia-related. He also wasn't ready to tell a teacher at school that his hand hurt or he couldn't do something etc because of his dysgraphia. By the time he was 10-11 he was beginning to talk quite a bit about it with me in order to understand himself better. Now that he's 13, he explains himself to me and he can relate something that's going on to his homework ect to his disabilities as well as tell me no, this isn't dysgraphia etc. he is still very reluctant to discuss it with is teachers, but I suspect that's a combination result of having an expressive language disorder, seeing teachers as authority figures, and sometimes simply wishing it wasn't his reality. He's a kid who absolutely doesn't want to stand out or be different - yet even that I see changing this past year as he grows into his teen years.

My advice is to be patient, this will pass. I also wouldn't tell him yet, for instance, if reading is hard its dyslexia or if twist hurts its dysgraphia - I'd wait until you have a diagnosis to tell him a diagnosis/reason. Instead when he tells you things like that, or when you ask and he answers yet, empathize with him and let him know you are working on finding answers and help for him. You can tell him he has the appointment in October etc. - I'd just be hesitant to tell him the why yet, simply because when our ds was struggling just prior to diagnosis, the "why"s being tossed around turned out to be very incorrect.

Best wishes,

polarbear

My now 15-year-old son did not have a correct diagnosis until recently but he would tell me that he found things harder because his hands hurt and he did not have the endurance that other kids had when he was very young. When doctors and other "experts" would not listen to us I wondered if I was wrong and that my child just needed to try harder, so I told him "try harder." I wish I had never said that. I am a homeschool mom and that is what he tells me when I don't get things as fast as he does. I don't think he will ever forget.

The only thing I remember him saying that he didn't want to do was coloring and crafts and he would still say that is boring.

Sorry to be so long-winded on this, KJP, but another thought occurred to me - when we're dealing with huge things like unravelling our children's learning challenges, sometimes we need to just step back a bit and realize, hey part of this behavior may simply be his age, and I can deal with it that way. Explain to him whining doesn't work, ask him questions about how he's feeling etc.

The cause for his behavior may be a learning challenge, but the way the behavior plays out and how to deal with it are what you'd do with any nt child acting that way.

pbear

Yeah-- as a teacher (and later as a parent, though my child's problems are not LD or LD-related)... it's my experience that it is WAY better to approach things with an attitude of "how can I do _____"

rather than accepting "I can't because {label}." I really do not like statements like the latter at all; they are seldom factually correct, when you get right down to it. Sure, "I cannot walk" is correct for some mobility challenges, but "I can't keep up at the park" probably is not.

Sometimes this requires a mindset shift. One may have to step back mentally;

what is the fundamental nature of this activity/task?

what does "participation" look like? Meaningful participation/inclusion?

how important is it to me?

is there a way to meet my needs in a low-impact/hidden way? How?

In our family we say--

Everyone has reasons (for whatever it happens to be at the moment). Reasons can't be used as excuses, though. Nobody cares about your excuses but you; they're a lot more sympathetic to the reasons when you leave the excuses part out.

While that sounds a bit harsh, the bottom line is that if your reasons are so overwhelming that they alter the activity/task, then maybe you need to find a different activity, or a different WAY of doing it. In an educational sense, that kind of thing requires an admission that a disability DOES mean some inherent barriers to full inclusion, and may always do so. If it's a one-time thing, then extraordinary measures are probably fine... but if it's to be a regular part of your life going forward, you have to find fairly low-impact ways of flexing to meet your needs without impact to others. (This is on our radar because we so frequently DO require the active cooperation of others, so we have to weigh how much of that is reasonable to ask.)

Accommodations are supports, and they are intended to help BRIDGE or SCAFFOLD work-arounds that we use in adulthood. At that point, we are expected to 'own' our differences and advocate for what we actually need from others, and quietly go about doing the rest for ourselves. Or-- and this is the hard one to accept-- to come to terms with the fact that some things are NOT possible because there isn't a truly feasible way around the limitations.

This self-management includes things like-- if you have an anxiety disorder, using self-calming strategies in increasingly stressful settings until you are proficient at them... bringing earplugs or an MP3 player if you have a problem with auditory distractibility, etc. It also includes notifying others, asking for alternative format materials, etc.


My work as a parent is to teach my DD that set of self-advocacy skills in a long, slow arc. Some things, we ask for because of her AGE and MATURITY... and those things will eventually fade. I make it clear that I expect those things to fade. We talk about the work-arounds that SHE will need to employ, and I model those things for her so that they are familiar.

Practice makes perfect, right?

My other kind of random thoughts about this-- because my family is much like Dee Dee's I think, in our philosophy about disability:

The early adolescent years are VERY hard, because with greater demand on self-advocacy as an age-appropriate thing, you are also seeing a direct collision with challenges to their own self-acceptance and construction of their emerging adult identity-- they are simply uncomfortable in their own skins a lot anyway-- and disability makes it a thousand times worse.


As a mom, I have the heart-breaking job of convincing my DD that she has to accept that her life is harder than most people's, but that this is NO reason to feel sorry for herself (even if underneath it all, I still feel angry sometimes or sorry FOR her struggles). I'm awfully proud of her for managing it better than I do, honestly.

I openly celebrate my daughter's self-advocacy. As much or more than her academic successes, if that makes sense. We celebrate those steps toward independent management, and point them out when they happen. I don't know if that is right or wrong, but it is something that we do by instinct.

YES. Here too.

DeeDee

Thanks for the support. Hearing from the BTDT crowd helps.

To help us figure out what accommodations he needs and how they should be implemented, his OT is going to spend an hour in his class each week during summer school. The summer session has about a 4 to 1 student teacher ratio and only lasts six weeks.

Hopefully the time spent over the summer will set him up for a good start in the fall.

DS7 can still get teary eyed about it being harder for him, or not wanting to do it. And I have to say the fact that his teacher and OT work together is SOOO helpful - for homework it's up to him whether to write or type - he types the writing type assignments and writes the math, although even that can lead to melt downs as he can't get past curving his writing around the edge of the page rather than starting on a new line when he get to the end - it's like he needs a typewriter return!!!

But what I have found has distracted him or matured his attitude is being able to apply his analytical and science strengths to try to understand what happens - so language has really helped. He describes it as seeing it correctly in his brain but that when it comes out his hand something is missing, like some of the letters take a different route and don't always get there!

It is such a process -and Lori I am with you - I regret so much ever having pressed him to just work harder at it - and to do your best - when his best was such a struggle.

DeHe

I really think this is awful. I mean, I can see why one can't send a child to some other room in a doctor's office, while the doctor speaks to the parents. My child tends to internalize things a lot -- I think it will hurt him more than help him, to hear a doctor analyzing his weaknesses in front of him, within earshot.


CCN, can you elaborate more ? Do the accommodations they give help ? What sort of support/accommodations do they provide (other than easier work, which seems counterproductive) ?