Link soars

Today was Link’s first day on medication at school. I informed the teacher ahead of time and asked her to watch for any differences. After school was over she called me to tell me how amazed she was. Link did every assignment as fast or faster than any of the other kids. In math he even asked for more work to do. A different teacher even commented that Link seemed really happy today. And Link talked. It was contained to appropriate talking times, but during those times he chattered. I observed the same thing over the weekend. Link is now talking two to four times as much as he did before. It’s like the dam which was blocking the flow of his ideas has burst and now they can flow out in words. Or perhaps it is like a prisoner who has been set free. He was trapped in his own mind, overwhelmed by the simplest of tasks. Today he had an upset here at home and in order to resolve it I had to use tactics that I’m more used to using on Kiki. I didn’t have to talk slow or repeat myself to make sure he understood me.

These changes in Link are close to miraculous. Via medical intervention he has suddenly become the person we all felt he could be, but wasn’t. And yet I am wary. The shackles are off and he is flying. But he is flying so fast and so high that I’m afraid of a crash. I’m afraid to trust that this new person will stay. What if this new brilliance is a temporary effect and he will have to go back to how he was? I don’t want first hand experience of the Algernon effect. Also everything in life has a cost. This new Link is brilliant, what are we giving up? It is possible that we are only giving up things that we don’t mind losing, but I still need to identify what they are. I need to know the emotional/psychological cost. (The fiscal cost is going to be $90 per month if our insurance doesn’t help cover it.) One cost could be an emotional dependence on the medication. Link loves who he has been these past three days. I still need to make sure that he learns that the medication is only allowing him to access his intelligence, not providing something he otherwise wouldn’t have.

I am afraid, and hopeful, and relieved, and happy. Link in flight is a beautiful thing.

22 thoughts on “Link soars”

  1. I honestly don’t remember what, if you said, Link has.
    For me, I’m bipolar but wasn’t diagnosed till I was in my early 30’s. My family and I ALL knew that there was something wrong with me.
    I love being on my medication. I was lucky we found something that works well. I’ve been on it for 6 years now. I am emotionaly dependant on it, yes. Everyone who takes their meds the way they should is emotionally dependant on it. I wouldn’t trade it for the who I am without my medication. I do not like that person.
    Yes, there is always things you give up. But there are things you gain. With me, the ability to not rage, to think clearly, to be able to resist impulsive behaviors far outweight the tiredness, the sometime lethargy. From what I can tell, those really are the only side effects. I’m happier. And yes, he’ll fly high, but if mom and dad stabilize his flight, then he won’t crash, but keep flying higher and higher without his wings melting from the sun.
    *smiles* Or Schlocks plasgun.
    I’m glad to see that he’s doing well. With your help, he’ll continue to do well.

  2. I honestly don’t remember what, if you said, Link has.
    For me, I’m bipolar but wasn’t diagnosed till I was in my early 30’s. My family and I ALL knew that there was something wrong with me.
    I love being on my medication. I was lucky we found something that works well. I’ve been on it for 6 years now. I am emotionaly dependant on it, yes. Everyone who takes their meds the way they should is emotionally dependant on it. I wouldn’t trade it for the who I am without my medication. I do not like that person.
    Yes, there is always things you give up. But there are things you gain. With me, the ability to not rage, to think clearly, to be able to resist impulsive behaviors far outweight the tiredness, the sometime lethargy. From what I can tell, those really are the only side effects. I’m happier. And yes, he’ll fly high, but if mom and dad stabilize his flight, then he won’t crash, but keep flying higher and higher without his wings melting from the sun.
    *smiles* Or Schlocks plasgun.
    I’m glad to see that he’s doing well. With your help, he’ll continue to do well.

  3. Hooray!

    It’s stories like this that make me wish medication could fix me.

    But seriously, this makes me SO HAPPY. That is WONDERFUL, both for you and for Link.

    And maybe, just maybe, it means that things do work out, that struggles do come to an end, or at least a middle. That there are moments of conquest in life when you finally come to a place where you can see real progress. And for someone who is stuck in a place where progress seems very far away if not non-existent, that means hope.

    🙂 And maybe try not to worry so much. Sometimes we just have to let good things be good things. (I’m such a hypocrite sometimes, I astound even myself.)

  4. Hooray!

    It’s stories like this that make me wish medication could fix me.

    But seriously, this makes me SO HAPPY. That is WONDERFUL, both for you and for Link.

    And maybe, just maybe, it means that things do work out, that struggles do come to an end, or at least a middle. That there are moments of conquest in life when you finally come to a place where you can see real progress. And for someone who is stuck in a place where progress seems very far away if not non-existent, that means hope.

    🙂 And maybe try not to worry so much. Sometimes we just have to let good things be good things. (I’m such a hypocrite sometimes, I astound even myself.)

  5. I’ve been meaning to type this since your last post, where Chalain was jumping up and down excitedly. In fact, this started off as a reply to one of Chalain’s comments in said discussion thread, so please forgive any references to posts there. I also wish to note I tend to be very cagey about the specifics of my condition and medications in publically accessable places due to habits from my youth, so while I may be vauge here do be aware I’m more than happy to give details in person – in fact, if you have any questions or queries, I’d love to help with them. Anyhoo, the post itself!

    I’ve been meaning to write and comment on these matters for you for the last several days, both from my personal perspective and from my biochemical perspective (Which comes from being a biochemist who does a lot of reading in his spare time, along with talking to some extremely talented professors in university, heh), but I’ve honestly had trouble putting pen to paper past the ‘writers block’. A thousand things to write, only one pair of hands, and thus /none/ of them get written…

    …I note this is a classic ADD trait. Heh.

    What I will say is that when I was going through primary school, I was consistently struggling in many areas socially and academically (In my case, my weaknesses were language) whilst simultaneously extremely bright and talented in others – but my weaknesses were severe enough that they were considering holding me back a year in the hopes that I’d then be ready for high school once I was a year older.

    The NZ system for ADD diagnosis was, back then (“Before it became popular”, if you will) extremely thorough, careful, and cautious. In the end, they even did MRIs that came back with so much brain activity they concluded I was either ADD or an epileptic that should’ve have had seizures already. So, on the basis that it probably wasn’t the latter, and my normal (behavioral, etc) symptoms fitted the former, they put me on the pills.

    I was about 10, and remember thinking when the doctor was explaining I would be taking this daily, possibly for many years, that I hoped they didn’t work because the thought of taking pills on a regular basis? Augh!

    And then I took them.

    I was attending a small (30 kids total), rural school with two extremely skilled and experienced teachers. Every day, before morning tea break we had ‘creative writing’ (Writing practice, effectively). We had to write an acceptable amount before moving onto other activities, and then at 10AM we’d go out for morning break. Now, I’d never once gotten to play the activities. In fact, 3/4 of my morning breaks were at least partially spent indoors finishing my writing, because the teachers simply would not let me leave until it was done (Of course, the moment everyone else left to play outside – 90% of my distractees, if you will – the writing was done doublequick. Funny that…).

    The first day I took the medication, I remember sitting in class, and writing my creative writing – a full page, the generally accepted requirement. I was then bored, and there wasn’t going to be any activities to do yet, so I got more bored. And so, I looked around the room, saw a few lines on a blackboard written in an unusual grammatical structure, and whilst pondering this and rolling it over in my head, I proceeded to write a poem. It was half a page long (written in a consistent rythmn and rhyming scheme) and written on scrap paper, because I didn’t want to ‘mess up’ my creative writing book with something that wasn’t strictly classwork! So then when the next activities were getting ready, and we thus had to take our work up to show the teacher we were done, I was halfway down the cue, with a full page of creative writing, and “Oh by the way Miss, I got bored and so wrote this too.”

    …I recall my teacher nearly having a heart attack. *giggle*

    [cont]

  6. I’ve been meaning to type this since your last post, where Chalain was jumping up and down excitedly. In fact, this started off as a reply to one of Chalain’s comments in said discussion thread, so please forgive any references to posts there. I also wish to note I tend to be very cagey about the specifics of my condition and medications in publically accessable places due to habits from my youth, so while I may be vauge here do be aware I’m more than happy to give details in person – in fact, if you have any questions or queries, I’d love to help with them. Anyhoo, the post itself!

    I’ve been meaning to write and comment on these matters for you for the last several days, both from my personal perspective and from my biochemical perspective (Which comes from being a biochemist who does a lot of reading in his spare time, along with talking to some extremely talented professors in university, heh), but I’ve honestly had trouble putting pen to paper past the ‘writers block’. A thousand things to write, only one pair of hands, and thus /none/ of them get written…

    …I note this is a classic ADD trait. Heh.

    What I will say is that when I was going through primary school, I was consistently struggling in many areas socially and academically (In my case, my weaknesses were language) whilst simultaneously extremely bright and talented in others – but my weaknesses were severe enough that they were considering holding me back a year in the hopes that I’d then be ready for high school once I was a year older.

    The NZ system for ADD diagnosis was, back then (“Before it became popular”, if you will) extremely thorough, careful, and cautious. In the end, they even did MRIs that came back with so much brain activity they concluded I was either ADD or an epileptic that should’ve have had seizures already. So, on the basis that it probably wasn’t the latter, and my normal (behavioral, etc) symptoms fitted the former, they put me on the pills.

    I was about 10, and remember thinking when the doctor was explaining I would be taking this daily, possibly for many years, that I hoped they didn’t work because the thought of taking pills on a regular basis? Augh!

    And then I took them.

    I was attending a small (30 kids total), rural school with two extremely skilled and experienced teachers. Every day, before morning tea break we had ‘creative writing’ (Writing practice, effectively). We had to write an acceptable amount before moving onto other activities, and then at 10AM we’d go out for morning break. Now, I’d never once gotten to play the activities. In fact, 3/4 of my morning breaks were at least partially spent indoors finishing my writing, because the teachers simply would not let me leave until it was done (Of course, the moment everyone else left to play outside – 90% of my distractees, if you will – the writing was done doublequick. Funny that…).

    The first day I took the medication, I remember sitting in class, and writing my creative writing – a full page, the generally accepted requirement. I was then bored, and there wasn’t going to be any activities to do yet, so I got more bored. And so, I looked around the room, saw a few lines on a blackboard written in an unusual grammatical structure, and whilst pondering this and rolling it over in my head, I proceeded to write a poem. It was half a page long (written in a consistent rythmn and rhyming scheme) and written on scrap paper, because I didn’t want to ‘mess up’ my creative writing book with something that wasn’t strictly classwork! So then when the next activities were getting ready, and we thus had to take our work up to show the teacher we were done, I was halfway down the cue, with a full page of creative writing, and “Oh by the way Miss, I got bored and so wrote this too.”

    …I recall my teacher nearly having a heart attack. *giggle*

    [cont]

  7. [cont]
    I’m not saying the results will be nearly so dramatic, nor would I suggest one expects results so swiftly – though in this case, they do seem to be. But I went from being potentially held back a year to being an accelerant student by the time I hit high school at age 13, partly because my primary school teachers had forced me to do my work instead of letting me fall through the cracks at primary school…
    [They’d known I was intelligent all along, and given I’d had the same two teachers for several years, they’d watched and learned and grown to know me, and when they’d seen that intelligence they’d refused to let it go to waste. The end result was that while I missed an awful lot of break times, when I did finally get the medication I’d needed, I had the foundation education I needed to skyrocket.)

    I’ve been on the stuff for over half my life, now. I still forget to take it, I’m still not addicted, and other than the known and deal-with-able sideeffects (Appetite suppressant, stimulant effect meaning an evening dose will keep me awake past bedtime), I’ve gotten neither addicted nor affected by the stuff. Given it’s a genetic origion for my family (Trust me, I have examples), I never grew out of it. But at the same time… it’s not really a problem either. I take the pills (I note my medicated dose has been the same level [When accounting for the fact I’ve doubled in mass since I started on them] since the very beginning when we stabilised my needed dose.), the world hits crystal focus, four hours later I take another one or just sink into blissfully ignorant scatterbrainedness. …Not that I’m ignorant, it just feels that way by comparison. 😉

    If you want my opinions, experience, or even perhaps some of the scientific basis behind a lot of the logic in what is going on and how Ritalin, at least, will affect it, please feel free to let me know. (If all else fails, Chalain can poke me pretty easily, though Howard and I have emailed, too.) I’m also able to provide personal & observed-in-my-family advice on very-long-term regular/daily-stimulant use [I have a tendancy to not bother on weekends where I don’t need to study, so not strictly daily, but], if the little guy ends up on Ritalin/Rubifen/methamphetamine-based-medications and liable to be so for an extended period of time. I’m also more than happy to detail the general idea of how things panned out for me over the first few weeks, if you’d like to hear them – it’s funny, because it was so many years ago, yet my feelings from the time are still pretty clear, mostly because it had been such a shock. Given the aforementioned instinctive caution in public places (Mostly because I came from a poor area where the medication was actually quite valuable on the street, so Secrecy Was The Key), I won’t detail them here, but I’m more than happy to share my personal experinces in case they’re of any value to you for the weeks or months to come.

    I think Chalain mentioned the concept in another comment somewhere. The results may or may not be so spectacular over time, nor should one expect them to be so. But what the medication did, for me, was free me from my shackles. It let me start telling my brain what to do, not the other way around… And these days I’m at university, studying both Biochemistry and Computer Science. And I’d study more if there were enough hours in the day, too.

  8. [cont]
    I’m not saying the results will be nearly so dramatic, nor would I suggest one expects results so swiftly – though in this case, they do seem to be. But I went from being potentially held back a year to being an accelerant student by the time I hit high school at age 13, partly because my primary school teachers had forced me to do my work instead of letting me fall through the cracks at primary school…
    [They’d known I was intelligent all along, and given I’d had the same two teachers for several years, they’d watched and learned and grown to know me, and when they’d seen that intelligence they’d refused to let it go to waste. The end result was that while I missed an awful lot of break times, when I did finally get the medication I’d needed, I had the foundation education I needed to skyrocket.)

    I’ve been on the stuff for over half my life, now. I still forget to take it, I’m still not addicted, and other than the known and deal-with-able sideeffects (Appetite suppressant, stimulant effect meaning an evening dose will keep me awake past bedtime), I’ve gotten neither addicted nor affected by the stuff. Given it’s a genetic origion for my family (Trust me, I have examples), I never grew out of it. But at the same time… it’s not really a problem either. I take the pills (I note my medicated dose has been the same level [When accounting for the fact I’ve doubled in mass since I started on them] since the very beginning when we stabilised my needed dose.), the world hits crystal focus, four hours later I take another one or just sink into blissfully ignorant scatterbrainedness. …Not that I’m ignorant, it just feels that way by comparison. 😉

    If you want my opinions, experience, or even perhaps some of the scientific basis behind a lot of the logic in what is going on and how Ritalin, at least, will affect it, please feel free to let me know. (If all else fails, Chalain can poke me pretty easily, though Howard and I have emailed, too.) I’m also able to provide personal & observed-in-my-family advice on very-long-term regular/daily-stimulant use [I have a tendancy to not bother on weekends where I don’t need to study, so not strictly daily, but], if the little guy ends up on Ritalin/Rubifen/methamphetamine-based-medications and liable to be so for an extended period of time. I’m also more than happy to detail the general idea of how things panned out for me over the first few weeks, if you’d like to hear them – it’s funny, because it was so many years ago, yet my feelings from the time are still pretty clear, mostly because it had been such a shock. Given the aforementioned instinctive caution in public places (Mostly because I came from a poor area where the medication was actually quite valuable on the street, so Secrecy Was The Key), I won’t detail them here, but I’m more than happy to share my personal experinces in case they’re of any value to you for the weeks or months to come.

    I think Chalain mentioned the concept in another comment somewhere. The results may or may not be so spectacular over time, nor should one expect them to be so. But what the medication did, for me, was free me from my shackles. It let me start telling my brain what to do, not the other way around… And these days I’m at university, studying both Biochemistry and Computer Science. And I’d study more if there were enough hours in the day, too.

  9. You know, I’ve always been Very Much Against Taking-A-Pill-Everyday-For-The-Rest-Of-One’s-Life.

    Reading this entry, and the comment Reiver posted, the only thing I could vaguely compare it to in my experience was the first time I put on my glasses and walked outside. I remember vividly being able to see the leaves on the trees. I hadn’t realized you were supposed to be able to see things that sharply, that clearly. And I have no problem whatsoever with wearing glasses/contacts for the rest of my life. Pondering this memory, and my aversion to lifelong drugs, I delved deeper into that aversion. I realized my general line of thinking is that my body knows better what it needs than the quacks who call themselves doctors. But obviously this is wrong for at least one set of organs.

    Hence, it’s quite possible that my body could be wrong on more than one organ. So, sure, taking pills to right what my body’s gotten wrong is … less despicable to me, now.

    (I note, I never much cared if *other people* took drugs every day or even every hour. I have just always hated the idea of putting myself on medication forever: it just seems like I should be able to DO something myself to fix it, ya know?)

  10. You know, I’ve always been Very Much Against Taking-A-Pill-Everyday-For-The-Rest-Of-One’s-Life.

    Reading this entry, and the comment Reiver posted, the only thing I could vaguely compare it to in my experience was the first time I put on my glasses and walked outside. I remember vividly being able to see the leaves on the trees. I hadn’t realized you were supposed to be able to see things that sharply, that clearly. And I have no problem whatsoever with wearing glasses/contacts for the rest of my life. Pondering this memory, and my aversion to lifelong drugs, I delved deeper into that aversion. I realized my general line of thinking is that my body knows better what it needs than the quacks who call themselves doctors. But obviously this is wrong for at least one set of organs.

    Hence, it’s quite possible that my body could be wrong on more than one organ. So, sure, taking pills to right what my body’s gotten wrong is … less despicable to me, now.

    (I note, I never much cared if *other people* took drugs every day or even every hour. I have just always hated the idea of putting myself on medication forever: it just seems like I should be able to DO something myself to fix it, ya know?)

  11. I’m so pleased to hear how well things are going for Link. I hope there is no crash; just a smooth transition into steady flight.

    It strikes me that you have a very good basis for understanding and relating to Link’s experience. Your thyroid medication does for you on an emotional level what Link’s medication does for him on an intellectual level.

  12. I’m so pleased to hear how well things are going for Link. I hope there is no crash; just a smooth transition into steady flight.

    It strikes me that you have a very good basis for understanding and relating to Link’s experience. Your thyroid medication does for you on an emotional level what Link’s medication does for him on an intellectual level.

  13. I understand the desire not to talk about this stuff in public. We’ve not been talking about Link’s challenges in public for years. I did not want to label him or embarass him. A couple of realizations changed this position. I realized that if we medicate him without telling anyone we are sending the message that this medication is a secret and the cause of it is something to be ashamed of. Instead we are trying to send a message that the ADD is part of him the same way that blue eyes are part of him. ADD is a useful descriptor, but it is not all he is. We can better send that message if the people around Link are as matter-of-fact as we are. By being open I help the people around Link come to terms with medication.

    Another consideration was the realization that my experiences with Link will actually be useful to people. There may be a parent out there who is going through the same sort of process and could use the knowledge that they are not alone. I know that there are people like you who have useful experiences which can help me. If I never say anything, then no one benefits from the struggle that we’ve been going through.

  14. I understand the desire not to talk about this stuff in public. We’ve not been talking about Link’s challenges in public for years. I did not want to label him or embarass him. A couple of realizations changed this position. I realized that if we medicate him without telling anyone we are sending the message that this medication is a secret and the cause of it is something to be ashamed of. Instead we are trying to send a message that the ADD is part of him the same way that blue eyes are part of him. ADD is a useful descriptor, but it is not all he is. We can better send that message if the people around Link are as matter-of-fact as we are. By being open I help the people around Link come to terms with medication.

    Another consideration was the realization that my experiences with Link will actually be useful to people. There may be a parent out there who is going through the same sort of process and could use the knowledge that they are not alone. I know that there are people like you who have useful experiences which can help me. If I never say anything, then no one benefits from the struggle that we’ve been going through.

  15. Thank you for sharing your experiences. They’re really helpful to me as I try to map out possible futures for Link. It’s nice to have some truly successful ones to look at.

    Right now we’re doing several weeks of Metadate which is a slow release version of ritalin. He takes the pill each morning. These several weeks will form a baseline from which we can tweak the system. I expect that we’ll end up a system like you or Chalain has where he sometimes takes the medication and sometimes does not.

    I don’t know how often I’ll be posting about this. I’m posting alot right now because it is new and scary, but if you have thoughts about anything I post please do share them. If you don’t want to post your thoughts in public, feel free to email sandratayler at livejournal.com.

  16. Thank you for sharing your experiences. They’re really helpful to me as I try to map out possible futures for Link. It’s nice to have some truly successful ones to look at.

    Right now we’re doing several weeks of Metadate which is a slow release version of ritalin. He takes the pill each morning. These several weeks will form a baseline from which we can tweak the system. I expect that we’ll end up a system like you or Chalain has where he sometimes takes the medication and sometimes does not.

    I don’t know how often I’ll be posting about this. I’m posting alot right now because it is new and scary, but if you have thoughts about anything I post please do share them. If you don’t want to post your thoughts in public, feel free to email sandratayler at livejournal.com.

  17. The glasses comparison is very apt. It really describes how Link has suddenly been in focus these past three days.

    I also hate the idea of taking pills every day for the rest of my life. I’ve had to come to terms with that emotion because I’m on daily doses of thyroid medication for the rest of my life. I hate that forgetting to take my pill changes who I am. I hate feeling dependent on a pill to stay capable. I think that’s why it took me more than 5 years to even consider medication as a possibility for Link. I was fairly certain that Link had ADD 5 years ago, but I spent years determined to find any solution except medication.

    Then I realized that I was in essence putting Link through hours of eye exercises, headaches, and squinting. Making him suffer all of that is wrong when there are glasses available.

  18. The glasses comparison is very apt. It really describes how Link has suddenly been in focus these past three days.

    I also hate the idea of taking pills every day for the rest of my life. I’ve had to come to terms with that emotion because I’m on daily doses of thyroid medication for the rest of my life. I hate that forgetting to take my pill changes who I am. I hate feeling dependent on a pill to stay capable. I think that’s why it took me more than 5 years to even consider medication as a possibility for Link. I was fairly certain that Link had ADD 5 years ago, but I spent years determined to find any solution except medication.

    Then I realized that I was in essence putting Link through hours of eye exercises, headaches, and squinting. Making him suffer all of that is wrong when there are glasses available.

  19. Heh, when they first put me on Ritalin they hadn’t even come up with the slow release stuff. It didn’t work for me due to pure logistical reasons (I’d been on the short release stuff for years, I know how it affects me already – Especially the ‘wears off in 4(6) hours bit – and I’d rather have to take one kind of pill more often and run the risk of forgetting midday doses, than have to juggle two kinds, and/or be stuck with only slow release in my pocket at lunchtime, when I realise I forgot to take anything that morning…), but my brother uses that and finds it’s a big help, as he lacks the organisation to remember more than once a day. (It also saved him taking any to school, which is a blessing in saving-complicatedness around here – it’s technically a class A restricted drug around here, so the paperwork gets a pain for that kind of thing.)

    Same stuff, different delivery method. 🙂

  20. Heh, when they first put me on Ritalin they hadn’t even come up with the slow release stuff. It didn’t work for me due to pure logistical reasons (I’d been on the short release stuff for years, I know how it affects me already – Especially the ‘wears off in 4(6) hours bit – and I’d rather have to take one kind of pill more often and run the risk of forgetting midday doses, than have to juggle two kinds, and/or be stuck with only slow release in my pocket at lunchtime, when I realise I forgot to take anything that morning…), but my brother uses that and finds it’s a big help, as he lacks the organisation to remember more than once a day. (It also saved him taking any to school, which is a blessing in saving-complicatedness around here – it’s technically a class A restricted drug around here, so the paperwork gets a pain for that kind of thing.)

    Same stuff, different delivery method. 🙂

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