I am reaching out to the smartest community on the internet—the only community I know—to help me find the right resources for my son. My very gifted, inspiring, and deserving child. I know this is a long diary—so let me summarize—if you know anyone who deals with twice exceptional or learning disabled children, please read this.
My son is a quiet 15 year old. He is reserved, thoughtful, and intellectual. He is respectful and obedient (for an adolescent male), only showing occasional teenage angst or passive resistance, which can be quickly stifled by an interaction of sarcasm and/or humor, as he welcomes the appeal to his amazingly keen wit. He is neither impulsive nor hyperactive. He is not motivated by reward or punishment, as he appears to adapt to almost any situation without emotion.
My son is socially awkward. Nerdy to the core, tall and lanky, with glasses and wispy blonde hair—he is the poster child for all of us non-jocks and non-cheerleaders who just don’t belong on the cover of seventeen magazine. Aside from that making him my hero, it makes him a target for bullies, as he most sadly found out in our public middle school. Having no idea yet that what makes him nerdy at age 15 will make him bloody brilliant after high school, he lacks confidence.
My son has ADHD-1, inattentive type. For those of you who don’t know, it means that he lacks focus but is not hyperactive. He is also learning disabled (LD) with an extra bonus diagnosis of severe dysgraphia. His verbal reasoning abilities and advanced cognition are off the charts. He is really very brilliant. Unfortunately his working memory and processing speed are also off the charts—in the opposite direction. What that means specifically to us is that he has severe executive functioning deficiencies. He cannot organize tasks, process multi-step directions, has no concept of the passing of time or time management, loses homework, forgets assignments, cannot break down complex tasks into steps, and struggles to translate his thoughts into words (verbally at times, but especially on paper).
My son was always slightly different. He was slow to develop language (around 3) and slow to read (he received remediation in first grade—but has exceled since).
But it was at the start of sixth grade when things began falling apart for my son. Our lives shattered and we have not been able to put the pieces back together yet. As teachers began to shift responsibility for communicating and keeping up with assignments away from me and onto him—we suffered. And sixth grade was the major shift. There had been problems before, but this was truly the point of no return. It took from September until May for us to get the diagnosis, which we had to seek out and identify on our own without the help of the school system. During that time we tried several behavior modification techniques. He had a homework planner that needed to be signed by his teachers. We had a website with homework that was supposed to be updated by the teachers (but often was not). We had a dedicated place and time for him to do his study. We had a reward system and chart showing his progress. We had it all.
At the time, I was adamant that he maintain honor roll. I look back on those expectations and cringe. I am such a bloody fool.
It was a horrific year of conferences with teachers who didn’t care about my child. (teachers who btw put my child in the back of the room with the other D students because sitting your students based on grades with the A students up front is a stellar teaching technique she learned at some conference— Obviously I still harbor serious resentment about that one.)
But at the end of the year, I had a diagnosis. A diagnosis!!!! My problems were solved. Now we know what this is, I thought. And we can fix it. So let’s get to work. I read and read about our new diagnosis. What did my child need? What accommodations would he have to have? What’s an IEP? I called the school during the summer and they assured me we wouldn’t have to go through the IEP process. That my son could get the attention he needed without that. Let’s just call this the first of many mistakes.
We went through half a school year of teacher conferences without the protection of an IEP and then the prospect of all the red tape of creating one. Then, an amazing thing happened. A private counselor where we were taking my son mentioned a school especially for families like us. Could it be?
Yes. Yes it could. So off we went. Small class sizes (no larger than 8), individual instruction, teaching strategies specifically for LD kids, AND an IEP with no hassle. We ran, not walked straight into their arms. Tuition $$$ ? Who cares—we’ll make it work. Does he even have to finish the rest of the week where he is now?
A year and a half later, my son has the grades we want him to have, but never has homework. He is disengaged in learning. When we ask what he is studying in history and ask him what he thinks—he says things that are very frightening. Like—you’re not allowed to talk about what you think. It might offend someone. We begin to pay closer attention to the curriculum and lessons and realize that he’s, indeed, not learning much. Multiple choice and matching are the order of the day. Which I suppose is great if you have dysgraphia (no writing), but not so helpful in preparing you to write term papers in college—assuming you want to go.
We had conferences there with the teachers and administration and are again, not satisfied. The school really is great in compensating for the weaknesses of LD students. But we had grave concerns that he was not being prepared for life after high school.
So we look again for alternatives. This time we end up at another small private school. Here we are absolutely sure he will be challenged to think intellectually, but are concerned that he will not receive the support in organization and executive function he needs. Our concerns turn out to be well-founded.
This is his second year at the school. Socially he is doing very well. Intellectually he is doing very well. Academically he is doing very poorly. How can you be doing very well intellectually and failing academically? Well that’s the beauty of twice exceptional children. He understands the content of his classes. He is reading his material. He is learning. He is listening to the teachers and he gets it. But he doesn’t turn in completed assignments. He doesn’t write down assignments to complete. He sits for hours staring at a blank page, unable to write down his thoughts.
We really like his teachers at his current school, but we are not getting the support for his LD that we need. The administration and counseling staff agree to accommodations even though they have no formal IEP process, but they cannot follow through on them—because the staff has no skills in dealing with exceptional children. Many of the staff have organizational issues themselves. And of course, that’s pot calling the kettle black—and you’d have to know me to know that, but then that’s the point. I’m the one looking for help; I’m not proposing to be the solution.
Some things we have tried…
He has an iPad with a homework app and reminders and scans all of his work so it “can’t be lost” anymore. But it can still be lost…
He has study hall first period so that he can be sure to catch any last minute assignments before they’re due. The school is supposed to help him. But it doesn’t work.
He has mindmapping tools to help him brainstorm and organize his thoughts. It hasn’t helped.
I can’t begin to tell you all I’ve tried. He has gone to a few LD specialists and psychologists, but none of them are reaching him. He won’t TALK to people. He’s so introverted. They can’t tell me what to do, because they don’t know.
I need a specialist. Someone who will take the time to dig into his mind. Not someone who wants to make an appointment for every other week. We are insured—GREAT INSURANCE. And even if we weren’t—I’d pay anything. Someone tell me what to do.
And I’m not so traditional that I need him to be an A student. I don’t need him to go to college. I don’t need him to take a narrow path. I’m ok with an alternative road. But today we pay $20k year in tuition and tutors for D’s and F’s and a low self-esteem. We can’t afford more $$$ , so I need another answer. Surely there’s a better way. Just because I don’t know what it is, doesn’t mean it doesn’t exist.
This is the most resourceful community I know. Please—someone read this and tell me you know someone who can help me.
We live in NC, but I’d travel to the moon to help my son.