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

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