"Zachary is such a bright child. I have to tell you, he was one of my favorite students."
I had run into Andrea on the way out of the school this morning. I'm grateful that I stopped to run in and put lunch money on the boys' accounts. Instead of teaching first grade this year, she's interning for her principalship. Zachary loves Andrea.
"I spoke with Ms. D last year after we tested him for AIG, and told her that he is so clearly gifted, with his reading and math skills. He's just not on second grade level. It's such a shame that his medicine wasn't working. M. said she was going to make sure not to lose track of him."
I am trying not to cry with gratitude in front of this woman. After the last three months, I've come to feel like every interaction with the school is a battle.
"I'm going to work with his teacher and share with her some of the modifications I used with him. She's new to teaching second grade."
She's also been out for a week with the flu. Which means that terse email I sent two days ago asking about the lack of communication and if my child's needs were being met makes me a true Asshole Parent.
I mention that I am trying to get a 504 for him (again), and ask about the denial last year.
"We didn't need one last year. I've worked with so many kids like Zachary. Even when the meds wore off, I was able to use modifications to help him. All children with disabilities are covered under 504, but not all have modification plans. The problem is, it either has to be affecting his grades and impeding his learning, or impeding the classroom. Last year, that just wasn't the case. He's just too smart."
I stand there, filled with pride and pain. I explain my frustration with this, and everything I've been told by educators and friends (none of which work at our school, unfortunately).
"I'll be working here through December. I'll see if I can help with the 504 process. He needs that so teachers that don't know how to work with children like him can get through to him. He's a special case. I'll see what we can do to make sure we're meeting the law."
I am covering my nose so that I can squelch the tears.
"He's a special case. He's on such a higher level. He often does his own thing, but he needs to be challenged. I know he's frustrated by his lack of focus. I'll speak to his teacher."
I offer out my email address and we say our goodbyes. It is all I can do not to jump for joy and break down into tears. I was so relieved to hear something positive about my child. And yet I am still eternally frustrated at the way this disorder complicates our lives.
In other news, I managed to get an email to the Exceptional Children's Parent Involvement coordinator for our county. Which means I have someone from outside the school who can help me navigate the legal waters of this Neverending Saga.
All in time, I suppose.
If life is a song, then this blog is about the second verse - life after divorce, with three silly boys, and me learning to be me again.
Contact Me: the2ndverse@gmail.com
Contact Me: the2ndverse@gmail.com
Thursday, October 22, 2009
Tuesday, October 13, 2009
How Much if Not Enough?
Yesterday I received a call from the pediatrician's office. The angel on the phone informed me that the prior authorization for Middl'un's Vyvanse had finally gone through, and was ready for pick-up at the pharmacy. I thanked that angel profusely, and felt a few moments of elation - I'd finally beat the insurance company. After six months of purchasing and trying their pre-ordained list of ineffective generics, we were able to make the case for a newer drug.
When we picked up the prescription yesterday afternoon, Middl'un was interested to see what color pills he would be taking the next day. He and I oohed a bit over the pretty blue-green and white color, and then I put them away.
As I stood in the kitchen this morning, a cup of milk in one hand and a pill in the other, I wondered if perhaps I had an unhealthy amount of false hope in this drug. Watching him take the medication, I had the familiar feeling of doubt and tension in my gut. If this doesn't work, I thought, I'm going to fall hard. It is such a tooth-pulling exercise to get new medications, and dosages, worked out for him. I've been emotionally exhausted for the past month.
And of course, there's always the concern for side effects, for the potential damage to his heart. There's the ever-present thoughts dwelling on whether or not it is right or wrong for us to alter the chemical make-up in his brain. If it were antidepressants or insulin, you wouln't think a second thought, would you? My brain reels and rehashes the same arguments.
Despite sending four emails in the past three weeks, I have not heard anything back from the teacher. I sent on a paper note today informing her of the new medicine, and asking her to please give me feedback on his behavior over the next week. I am concerned by the lack of communication from her end. I know from the counselor that the Section 504 process can take up to 4 weeks of observation before they even call a meeting on it, so I'm not riding the bit too hard - but it would be good to have some acknowlegement of having received my emails. I'm wondering if my intentions of being the Asshole Parent are backfiring.
Speaking of his behavior, I've been thinking a lot about the school's point of view in this. I have to stick up for my son. I realize that his problems there are probably two-fold. They stem from his disability, and the fact that he also has a stubborn, independent streak a mile wide. Sometimes I wonder if I'm ascribing the right behaviors to the right issues, myself. Sometimes I wonder what is and is not in his control. As I explained to a friend yesterday, my hope is that treating the disability and learning to work around it with him will help resolve some of the anger and stubborness, too. I'm afraid the school thinks I'm only making excuses for him.
I do hope, as Christi commented the other day, that if/when the medicine works, they will notice the difference, and understand what is and is not within his control. That was an eye-opener for me in the beginning, when the Concerta started working and he was a completely different child. Well, still Middl'un with a lot of pep and bounce, but he could sit and hold extended conversations with me. He could finish his homework in 20 minutes. He didn't feel the need to walk around constantly or swing his arms wildly and bash his little brother in the head.
I have so much hope riding on the next two weeks, and hoping that the Vyvanse will work. Cross your fingers, please.
When we picked up the prescription yesterday afternoon, Middl'un was interested to see what color pills he would be taking the next day. He and I oohed a bit over the pretty blue-green and white color, and then I put them away.
As I stood in the kitchen this morning, a cup of milk in one hand and a pill in the other, I wondered if perhaps I had an unhealthy amount of false hope in this drug. Watching him take the medication, I had the familiar feeling of doubt and tension in my gut. If this doesn't work, I thought, I'm going to fall hard. It is such a tooth-pulling exercise to get new medications, and dosages, worked out for him. I've been emotionally exhausted for the past month.
And of course, there's always the concern for side effects, for the potential damage to his heart. There's the ever-present thoughts dwelling on whether or not it is right or wrong for us to alter the chemical make-up in his brain. If it were antidepressants or insulin, you wouln't think a second thought, would you? My brain reels and rehashes the same arguments.
Despite sending four emails in the past three weeks, I have not heard anything back from the teacher. I sent on a paper note today informing her of the new medicine, and asking her to please give me feedback on his behavior over the next week. I am concerned by the lack of communication from her end. I know from the counselor that the Section 504 process can take up to 4 weeks of observation before they even call a meeting on it, so I'm not riding the bit too hard - but it would be good to have some acknowlegement of having received my emails. I'm wondering if my intentions of being the Asshole Parent are backfiring.
Speaking of his behavior, I've been thinking a lot about the school's point of view in this. I have to stick up for my son. I realize that his problems there are probably two-fold. They stem from his disability, and the fact that he also has a stubborn, independent streak a mile wide. Sometimes I wonder if I'm ascribing the right behaviors to the right issues, myself. Sometimes I wonder what is and is not in his control. As I explained to a friend yesterday, my hope is that treating the disability and learning to work around it with him will help resolve some of the anger and stubborness, too. I'm afraid the school thinks I'm only making excuses for him.
I do hope, as Christi commented the other day, that if/when the medicine works, they will notice the difference, and understand what is and is not within his control. That was an eye-opener for me in the beginning, when the Concerta started working and he was a completely different child. Well, still Middl'un with a lot of pep and bounce, but he could sit and hold extended conversations with me. He could finish his homework in 20 minutes. He didn't feel the need to walk around constantly or swing his arms wildly and bash his little brother in the head.
I have so much hope riding on the next two weeks, and hoping that the Vyvanse will work. Cross your fingers, please.
Saturday, October 10, 2009
How Do You Fight the Feeling of Being Completely Helpless?
Middl'un got written up at school again yesterday. He was first trying to finish the homework from the night before in class. And then he was reading his own book, instead of the textbook.
The teacher made a point that she asked him to put away his own book six times, but he didn't do it. Therefore (in her eyes), he chose not to do it.
And I am conflicted. Obviously, I wasn't there. He could have told her he wasn't going to do it because he didn't want to. I don't know.
But I can ask Middl'un to do something six times at home, and he won't do it unless I stay right on top of him to complete the task. Annoying and frustrating as hell, yes - but it's not always a matter of choice on his part. A lot of the time (especially lately!) it's a matter of the fact that he forgets as soon as the question is over - even if he hears the damn question. (Heh. I just noticed that the write-up says he argued with her that she only told him once.)
So anyway, he has two days of ISS now.
I'm so sick of reading these notes. Do they not understand what ADHD is?
I'm so sick of being unable to help him, at feeling so crap and ineffectual as a parent, because nothing I do works. No pep talk I give him or discipline I dole out is effective at helping him, here. It's not just about his choice to succeed, and I find myself slamming my head into the wall over that as much as the teachers.
In good news, we saw the pediatrician Thursday afternoon. The teacher finally provided us with her input, which seemed like a very dark review of his behavior. It was enough to convince our pediatrician that the medicine wasn't working. After some extended time talking to the insurance company, we're trying to get an authorization for coverage for Vyvanse. We also decided to start on a middle dose, given the severity of Middl'uns issues and his current dosages. Luckily we got a coupon to help cover the cost of the first co-pay, which I think is fantastic given the amount of money I've wasted on medicines that don't work. I'll figure out if the prescription is actually covered on Monday.
I also asked for (and received) a list of counselors in the area. I'm almost reluctant to start making those calls... I have a few concerns about the expectations for treatment there. As a single parent, I'm limited to the number of times a week I can miss work - not to mention the way that co-pays add up. I've sort of hit my frustration peak, however; if he needs it, he clearly needs it, and I'll have to make sacrifices elsewhere.
I just wish I could fight this feeling of being completely helpless. Today I've struggled, and he's been hard to get along with. Some of it is his inability to focus, and some of it is his ability to be a total stubborn-tail. I imagine if my mother were following me around and nagging/reminding me to do the same task hundreds of times, I might be disagreeable, too, though. The alternative is to let him do his own thing, which seems neither productive nor progressive for him.
I wish I knew the magic tricks. For the longest I thought it might be that I needed to find his "currency" - the things he valued the most and would work the hardest to keep and maintain. By manipulating his currency, I could have him work towards rewards and have consequences for inappropriate behavior. Anymore, I'm somewhat scared that the "currency" isn't the issue, but that it's something more dark and elusive beyond our control. It's when I consider that darkness, the true depth of his disability, so to speak, that the surge of helplessness, anxiety, and fear rise up in me. What if I am not enough? My pushing and redirection and encouragement can't help him in the classroom, as I'm not there. I can't be there to tell them him to remember all of his notebooks, nor can I remind him to keep his voice down, or to stay in his seat. Sometimes I'm so frustrated myself, I worry my anxiety and irritably will backfire on all the positive things I'm trying.
I realize that part of my fear here is that this disorder is far beyond my control. That no matter how much time I invest or love that I have, I cannot take away his suffering, and I cannot make the world accept him as he is. I cannot make the school automatically understand that his impulsive outbursts, his daydreaming nature, or his need to constantly walk around are a product of his nature. I cannot force him to wake up and realize that he has to work around his disability, too. That is something that will hopefully come in time for him.
But not having that ability to completely help him... and not having that control over the outcome - that terrifies me. Especially when I want the very best outcomes for him and his brothers. I know I haven't set them up for the easiest life. I know that they've had to deal with much more than many children their age. It is hard not to be wracked with guilt when I can't reach him, when I can't "fix" him. (And simultaneously, it is hard not to be wracked with guilt when I consider his disability, his nature, as something that needs "fixing".)
Years ago, I saw a counselor to try to help me get back on track with my parenting, which was suffering under the weight of both divorce and a heavy depression. She once told me, as I cried in her office over my weaknesses as a mother, that "this is all there is", and that I had to learn to work with, and focus on, what I had - and not what I didn't. To work in the moment, and to quit obsessing over the outcomes.
I wish I knew the easy way to let go of these inward struggles. I keep telling myself that this is all there is - and that we will work with it. I will keep pushing him to succeed. I will keep trying to be supportive. I will focus on helping him in the here and now, to the best of my abilities. And I won't give up on him. I can't.
The teacher made a point that she asked him to put away his own book six times, but he didn't do it. Therefore (in her eyes), he chose not to do it.
And I am conflicted. Obviously, I wasn't there. He could have told her he wasn't going to do it because he didn't want to. I don't know.
But I can ask Middl'un to do something six times at home, and he won't do it unless I stay right on top of him to complete the task. Annoying and frustrating as hell, yes - but it's not always a matter of choice on his part. A lot of the time (especially lately!) it's a matter of the fact that he forgets as soon as the question is over - even if he hears the damn question. (Heh. I just noticed that the write-up says he argued with her that she only told him once.)
So anyway, he has two days of ISS now.
I'm so sick of reading these notes. Do they not understand what ADHD is?
I'm so sick of being unable to help him, at feeling so crap and ineffectual as a parent, because nothing I do works. No pep talk I give him or discipline I dole out is effective at helping him, here. It's not just about his choice to succeed, and I find myself slamming my head into the wall over that as much as the teachers.
In good news, we saw the pediatrician Thursday afternoon. The teacher finally provided us with her input, which seemed like a very dark review of his behavior. It was enough to convince our pediatrician that the medicine wasn't working. After some extended time talking to the insurance company, we're trying to get an authorization for coverage for Vyvanse. We also decided to start on a middle dose, given the severity of Middl'uns issues and his current dosages. Luckily we got a coupon to help cover the cost of the first co-pay, which I think is fantastic given the amount of money I've wasted on medicines that don't work. I'll figure out if the prescription is actually covered on Monday.
I also asked for (and received) a list of counselors in the area. I'm almost reluctant to start making those calls... I have a few concerns about the expectations for treatment there. As a single parent, I'm limited to the number of times a week I can miss work - not to mention the way that co-pays add up. I've sort of hit my frustration peak, however; if he needs it, he clearly needs it, and I'll have to make sacrifices elsewhere.
I just wish I could fight this feeling of being completely helpless. Today I've struggled, and he's been hard to get along with. Some of it is his inability to focus, and some of it is his ability to be a total stubborn-tail. I imagine if my mother were following me around and nagging/reminding me to do the same task hundreds of times, I might be disagreeable, too, though. The alternative is to let him do his own thing, which seems neither productive nor progressive for him.
I wish I knew the magic tricks. For the longest I thought it might be that I needed to find his "currency" - the things he valued the most and would work the hardest to keep and maintain. By manipulating his currency, I could have him work towards rewards and have consequences for inappropriate behavior. Anymore, I'm somewhat scared that the "currency" isn't the issue, but that it's something more dark and elusive beyond our control. It's when I consider that darkness, the true depth of his disability, so to speak, that the surge of helplessness, anxiety, and fear rise up in me. What if I am not enough? My pushing and redirection and encouragement can't help him in the classroom, as I'm not there. I can't be there to tell them him to remember all of his notebooks, nor can I remind him to keep his voice down, or to stay in his seat. Sometimes I'm so frustrated myself, I worry my anxiety and irritably will backfire on all the positive things I'm trying.
I realize that part of my fear here is that this disorder is far beyond my control. That no matter how much time I invest or love that I have, I cannot take away his suffering, and I cannot make the world accept him as he is. I cannot make the school automatically understand that his impulsive outbursts, his daydreaming nature, or his need to constantly walk around are a product of his nature. I cannot force him to wake up and realize that he has to work around his disability, too. That is something that will hopefully come in time for him.
But not having that ability to completely help him... and not having that control over the outcome - that terrifies me. Especially when I want the very best outcomes for him and his brothers. I know I haven't set them up for the easiest life. I know that they've had to deal with much more than many children their age. It is hard not to be wracked with guilt when I can't reach him, when I can't "fix" him. (And simultaneously, it is hard not to be wracked with guilt when I consider his disability, his nature, as something that needs "fixing".)
Years ago, I saw a counselor to try to help me get back on track with my parenting, which was suffering under the weight of both divorce and a heavy depression. She once told me, as I cried in her office over my weaknesses as a mother, that "this is all there is", and that I had to learn to work with, and focus on, what I had - and not what I didn't. To work in the moment, and to quit obsessing over the outcomes.
I wish I knew the easy way to let go of these inward struggles. I keep telling myself that this is all there is - and that we will work with it. I will keep pushing him to succeed. I will keep trying to be supportive. I will focus on helping him in the here and now, to the best of my abilities. And I won't give up on him. I can't.
Wednesday, October 7, 2009
After 11 Years, You'd Think I'd Have Learned How to Frost a Cake
Eleven years ago today, my life changed forever. He's gone from a 4 lb, 6 oz crook-of-the-arm nugget to a rather large, handsome, if not slightly awkward boy (but what 11 y/o isn't?)
Last night he was calmly reading on the couch while his brothers ran around in circles.
Meanwhile, I made this darling masterpiece:
Really, I know it needs to be submitted to Cakewrecks immediately. But that's kind of why I love it. It's MY cake wreck. Don't worry, we're having a family-only party. ;)
Last night he was calmly reading on the couch while his brothers ran around in circles.
Meanwhile, I made this darling masterpiece:
Really, I know it needs to be submitted to Cakewrecks immediately. But that's kind of why I love it. It's MY cake wreck. Don't worry, we're having a family-only party. ;)
Monday, October 5, 2009
Is that Advocate or Asshole?
I'm not sure I ever envisioned this blog as the ranting post of my child's ADHD struggles, but such is the flow of life lately.
Last Friday, I got a call from the school around 10:00 am. It was the (new) principal, and my Middl'un was in trouble for disrupting class again. This time Middl'un was placed on the phone, where he attempted to whisper his offenses to me in the quietest possible voice.
"You HIT someone?" I sat at my work desk, staring at a spreadsheet that was quickly blurring under the frustration and embarassment I felt sliding up my spine.
Mumble mumble whisper mumble.
"You BIT SOMEONE?" My voice cracks a little. OMG, my child bit someone else. Did it break the skin? What is going ON?
NO!!!! Mumble mumble mumble!!!
"You... spit?... on someone?" I half-breathe a sigh of relief (while still properly horrified) and launch into a 7 minute lecture on the disgusting and vile habit of spitting. I revoke the weekend bowling reward. I promise toilet bowl scrubbing.
I then speak with the (new) principal, who informs me that this is her first interaction with my darling. She goes into great detail about how she walked down to the classroom to find my son trying to glue a crayon back together, rather than focus on the assigned task.
I launched into my prepared and rehearsed dialogue. Middl'un has ADHD. His medication is not currently working for him. We're working with a pediatrician. I met with Vice Principal and His Teacher last week.
I can hear the sigh washing through her voice like a wave. She seems in a hurry to get off the phone. I imagine my son is probably climbing her desk or otherwise distracting her.
It's hard to accept this reality.
Very hard. I spent much of the rest of Friday morning trying to suck back my pride and my tears. And then I decided to don my wits and take action.
I called to confirm our doctor's appointment for the week.
I called the insurance company, where I was cut off. (I called them back, which was a feat, given my mood). I demanded a list of medications that they will approve/cover/provide mail-order scripts on (saves money!). I ended up printing out an email of generics that will likely make my pediatrician laugh out of her socks - but here's to having information handy for her!
And then I started researching, again, modifications for the classroom. I emailed the teacher, apologized briefly for my child's disturbances, and then reminded her about my Section 504 request. I asked about the daily progress reports we discussed setting up two weeks ago. I offered to send her materials and make a template for the daily progress report myself.
I've heard nothing back.
Okay - so it's Monday. I'll give her another day. I may accost the counselor for her email. Is it okay to ask the principal for hers, as well?
I printed out several articles with suggestions for classroom modifications. I resisted the urge to highlight them in bright yellow or pink (I don't want to completely insult her). I read them carefully to check for any crackpot approaches and violations of IDEA. I wrote up a kind letter explaining that I hoped these might present some new ideas to help Middl'un to focus and play along nicely. And I am bundling it all up to go to school tomorrow.
Yes, I'm becoming theAsshole Parent Parent Advocate. I realize the school bureaucracy moves at about the same pace of health care reform, but this is not going to be the public option. They are not going to forget about him, or write him off as a "problem child" this year. I am going to remain on their rears as often and as hard as it takes to get Middl'un the protections he so obviously needs. At the rate we're going, he'll be expelled by Christmas.
The truth of it is - it's good for me to take this role. Not just for Middl'un, but for me. Rereading the materials and the suggestions and the motivators and the modifications - it helps to remind me, on those days when my kid does something really fucking frustrating (such as spitting on another student), that there is more to this than a "problem" child.
And of course, it also means that I'm working to do as much as I can to ensure that our family runs smoother, and that Middl'un is set on a path to integrate successfully into society. If it means more counseling, or revising his meds, or hanging out at the school every morning until I catch the school psychologist on her way in - then that is what I will do.
He deserves it. Spit and all.
Last Friday, I got a call from the school around 10:00 am. It was the (new) principal, and my Middl'un was in trouble for disrupting class again. This time Middl'un was placed on the phone, where he attempted to whisper his offenses to me in the quietest possible voice.
"You HIT someone?" I sat at my work desk, staring at a spreadsheet that was quickly blurring under the frustration and embarassment I felt sliding up my spine.
Mumble mumble whisper mumble.
"You BIT SOMEONE?" My voice cracks a little. OMG, my child bit someone else. Did it break the skin? What is going ON?
NO!!!! Mumble mumble mumble!!!
"You... spit?... on someone?" I half-breathe a sigh of relief (while still properly horrified) and launch into a 7 minute lecture on the disgusting and vile habit of spitting. I revoke the weekend bowling reward. I promise toilet bowl scrubbing.
I then speak with the (new) principal, who informs me that this is her first interaction with my darling. She goes into great detail about how she walked down to the classroom to find my son trying to glue a crayon back together, rather than focus on the assigned task.
I launched into my prepared and rehearsed dialogue. Middl'un has ADHD. His medication is not currently working for him. We're working with a pediatrician. I met with Vice Principal and His Teacher last week.
I can hear the sigh washing through her voice like a wave. She seems in a hurry to get off the phone. I imagine my son is probably climbing her desk or otherwise distracting her.
It's hard to accept this reality.
Very hard. I spent much of the rest of Friday morning trying to suck back my pride and my tears. And then I decided to don my wits and take action.
I called to confirm our doctor's appointment for the week.
I called the insurance company, where I was cut off. (I called them back, which was a feat, given my mood). I demanded a list of medications that they will approve/cover/provide mail-order scripts on (saves money!). I ended up printing out an email of generics that will likely make my pediatrician laugh out of her socks - but here's to having information handy for her!
And then I started researching, again, modifications for the classroom. I emailed the teacher, apologized briefly for my child's disturbances, and then reminded her about my Section 504 request. I asked about the daily progress reports we discussed setting up two weeks ago. I offered to send her materials and make a template for the daily progress report myself.
I've heard nothing back.
Okay - so it's Monday. I'll give her another day. I may accost the counselor for her email. Is it okay to ask the principal for hers, as well?
I printed out several articles with suggestions for classroom modifications. I resisted the urge to highlight them in bright yellow or pink (I don't want to completely insult her). I read them carefully to check for any crackpot approaches and violations of IDEA. I wrote up a kind letter explaining that I hoped these might present some new ideas to help Middl'un to focus and play along nicely. And I am bundling it all up to go to school tomorrow.
Yes, I'm becoming the
The truth of it is - it's good for me to take this role. Not just for Middl'un, but for me. Rereading the materials and the suggestions and the motivators and the modifications - it helps to remind me, on those days when my kid does something really fucking frustrating (such as spitting on another student), that there is more to this than a "problem" child.
And of course, it also means that I'm working to do as much as I can to ensure that our family runs smoother, and that Middl'un is set on a path to integrate successfully into society. If it means more counseling, or revising his meds, or hanging out at the school every morning until I catch the school psychologist on her way in - then that is what I will do.
He deserves it. Spit and all.
Thursday, September 24, 2009
"So what's going on at home?"
It seems like such a simple question, but sometimes it feels so very loaded.
One of the most difficult things I encounter, as the parent of children with disabilities, is that I frequently internalize their disabilities as bad parenting on my part. If the boys are unfocused, loud, or running around in a tailspin, it's because I (deep breath):
In other words, I can kick myself 500 times a day over the fact that they are not like their peers, that they struggle with school, or that they have awkward social relationships. And it really doesn't help when random strangers (or even well-meaning family members) throw out those same insinuations. And it's completely counterproductive, especially when you're working your tail off to try to maintain a modicum of calm and patience and keep things running smoothly, even if noisely.
So if you're reading this, and you're a parent of a child with a disability - take a deep breath for a moment. You're doing the best you can, with the resources that you have.
Yesterday I had an early morning meeting at the school. It was planned with Middl'un's teacher, as our Beginning of the Year Pow-wow and my insight into how school is going. Unbeknownst to me, the Vice Principal decided to attend, since Middl'un has a history of referrals to the office (and indeed, had received one that week).
This meeting was hard for me, because it's hard to hear about the struggles your child is experiencing at school. It's hard to hear the frustration in the teacher's voice as she describes my son's inability to stay on task, and his occasional open defiance to complete the tasks.
I try to offer out Middl'un's perspective, and be a voice for him - he's a frustrated child. He can't stay focused to finish his tasks. He catches half of a conversation here and there, so he can't keep up with his friends. He gets frustrated if you interrupt his train of thought, and has to start over and repeat himself, getting more angry if he can't get the words together to get the thought out. He is frequently told he's doing the wrong thing. He's frequently told he hasn't finished X, Y, or Z as his friends have. He's impulsive and often acts out without thinking about the consequences. He denies responsibility because he often misses the connection between his actions and the consequences. He has a hard time reading others' emotions. He is not rapidly embraced by the world for these uniquities, either - of course he's going to be frustrated - and even angry - at times.
I'm not condoning his defiance or his outbursts - but I do want them to understand where this is coming from, so we can head it off and work through it.
I feel like the Vice Principal is scrutinizing my every word, trying to figure out what it is that's Really Wrong™. I explain about how rough kindergarten was for everyone...how 1st grade went well while Middl'un was on Concerta, but how things fell a bit at the end of the year when its effectiveness wore off... and how here we are, at the beginning of grade 2, how our summer went. How we manage his ADHD with medication (when it works!), what modifications and tricks I try to shorten his homework time. I get lots of detailed questions here - what happens when he doesn't comply? What happens when he does? What discipline works with him?
It's hard, because I don't have easy answers for them, either. We've been struggling with this for years. It feels like nothing I can do is right, especially when these two adults are looking at me for the right answers, for the best way to manage my child, a child I'm afraid they consider a large inconvienence given that his presence sucks up so much of their time in meetings and considerations.
My meeting eventually takes me to the counselor, because I am trying, once again, to reinitiate the Section 504 process to provide some protections for my son (and help get him some modifications in the classroom that will work). And the first question out of her mouth is, "So, tell me, what's going on at home?"
I'm sure she's only asking to figure out if he acts the same way with me as he does with his teachers. At the same time, the question brings back up my own tears of frustration. Because it always feels like here we are, being judged by our differences, by the fact that our family is not comprised completely of perfect, straight-A, easy-going children who soar through social interactions and spelling quizzes. That something must be *wrong* with us, wrong with our family, my parenting, or our resource network.
Of course, given the scope of Middl'un's struggles right now, it's obvious that we aren't perfect. That routines and medications and approaches need tweaking. The difficulty here is that it's hard to feel this is a team effort, when it seems like everyone else is readily looking for your faults.
So.... deep breath. I am doing the best I can, with the resources I have. And damnit, we will succeed.... in time.
One of the most difficult things I encounter, as the parent of children with disabilities, is that I frequently internalize their disabilities as bad parenting on my part. If the boys are unfocused, loud, or running around in a tailspin, it's because I (deep breath):
- am not strict enough
- am too strict
- don't feed them the right foods
- don't get them to bed at the right time
- don't spend enough quality time with each of them
- don't read to them enough
- am a single parent
- don't work them with enough on their social skills, manners, and tell them how to build relationships
- discipline unfairly
- discipline inconsistently
- forgot to follow a set routine
- forgot to plan ahead
- don't have the money
- am a lousy parent.
In other words, I can kick myself 500 times a day over the fact that they are not like their peers, that they struggle with school, or that they have awkward social relationships. And it really doesn't help when random strangers (or even well-meaning family members) throw out those same insinuations. And it's completely counterproductive, especially when you're working your tail off to try to maintain a modicum of calm and patience and keep things running smoothly, even if noisely.
So if you're reading this, and you're a parent of a child with a disability - take a deep breath for a moment. You're doing the best you can, with the resources that you have.
Yesterday I had an early morning meeting at the school. It was planned with Middl'un's teacher, as our Beginning of the Year Pow-wow and my insight into how school is going. Unbeknownst to me, the Vice Principal decided to attend, since Middl'un has a history of referrals to the office (and indeed, had received one that week).
This meeting was hard for me, because it's hard to hear about the struggles your child is experiencing at school. It's hard to hear the frustration in the teacher's voice as she describes my son's inability to stay on task, and his occasional open defiance to complete the tasks.
I try to offer out Middl'un's perspective, and be a voice for him - he's a frustrated child. He can't stay focused to finish his tasks. He catches half of a conversation here and there, so he can't keep up with his friends. He gets frustrated if you interrupt his train of thought, and has to start over and repeat himself, getting more angry if he can't get the words together to get the thought out. He is frequently told he's doing the wrong thing. He's frequently told he hasn't finished X, Y, or Z as his friends have. He's impulsive and often acts out without thinking about the consequences. He denies responsibility because he often misses the connection between his actions and the consequences. He has a hard time reading others' emotions. He is not rapidly embraced by the world for these uniquities, either - of course he's going to be frustrated - and even angry - at times.
I'm not condoning his defiance or his outbursts - but I do want them to understand where this is coming from, so we can head it off and work through it.
I feel like the Vice Principal is scrutinizing my every word, trying to figure out what it is that's Really Wrong™. I explain about how rough kindergarten was for everyone...how 1st grade went well while Middl'un was on Concerta, but how things fell a bit at the end of the year when its effectiveness wore off... and how here we are, at the beginning of grade 2, how our summer went. How we manage his ADHD with medication (when it works!), what modifications and tricks I try to shorten his homework time. I get lots of detailed questions here - what happens when he doesn't comply? What happens when he does? What discipline works with him?
It's hard, because I don't have easy answers for them, either. We've been struggling with this for years. It feels like nothing I can do is right, especially when these two adults are looking at me for the right answers, for the best way to manage my child, a child I'm afraid they consider a large inconvienence given that his presence sucks up so much of their time in meetings and considerations.
My meeting eventually takes me to the counselor, because I am trying, once again, to reinitiate the Section 504 process to provide some protections for my son (and help get him some modifications in the classroom that will work). And the first question out of her mouth is, "So, tell me, what's going on at home?"
I'm sure she's only asking to figure out if he acts the same way with me as he does with his teachers. At the same time, the question brings back up my own tears of frustration. Because it always feels like here we are, being judged by our differences, by the fact that our family is not comprised completely of perfect, straight-A, easy-going children who soar through social interactions and spelling quizzes. That something must be *wrong* with us, wrong with our family, my parenting, or our resource network.
Of course, given the scope of Middl'un's struggles right now, it's obvious that we aren't perfect. That routines and medications and approaches need tweaking. The difficulty here is that it's hard to feel this is a team effort, when it seems like everyone else is readily looking for your faults.
So.... deep breath. I am doing the best I can, with the resources I have. And damnit, we will succeed.... in time.
Tuesday, September 8, 2009
Why This Road is Exhausting.
Today was the start of another frustrating week.
For those who haven't been playing along, two of my sons have ADHD. Oldest is on a pretty even keel, and deals with distractibility and a lack of focus - but he can pretty much hold his own. At almost 11 years old, he understands his issues, and we've been able to find ways to work around his biggest productivity killers. He also uses Concerta, a common ADHD drug, to help manage his symptoms during the school year.
Middl'un, on the other hand, is battling hyperactivity and distactibility. Without medication, he's frequently off on another world. A loud, chaotic, run-around-jump-off-of-furniture-impulsive-to-the-max world. We struggle a lot with school. That's probably an understatement.
Last year he used Concerta for much of the year, and it worked beautifully up until March, which it lost its effectiveness. Since then, we've been playing the New Drug Game, which involves bribing a doctor, sleeping with an insurance agent, and a full assault by the pharmacist every time we come asking for a new stimulant.
So the '09/'10 school year starts, and I learn pretty quickly that the drug that helped us survive summer (Adderall) isn't really helping him much in school. He can't focus to complete achool assignments. Homework, which is often a worksheet and a short story, takes two and a half hours.
After some discussion with our doctor over the phone, we decided to try giving him a new dose of medication in the afternoons as a "boost" to help with homework. I ordered the medicine last Thursday. Unfortunately, it wasn't ready until after 5:30 today... which means he won't have it for school tomorrow.
I went by the school and picked up the forms so that he could have medication administered at school.
I got a note from the teacher that he is "trying, but can't seem to complete his in-class assignments". I wrote her back and told her homework was much the same. I wasn't sure what else to say. "I'm working on it." "Yo, life is hell here. Gimme a few weeks please?" "What, you can get him to complete part of it? YAY!"
With that note, I don't know if the new prescription (which is just more Adderall, in the afternoon), will do much good. Of course, I'm dreading going to the pharmacy tomorrow, because I forgot to check with the insurance company (stupid me!) about the extra dose, and they'll probably deny it JUST LIKE THEY DO EVERYTHING. And then I'll have paid a copay for two new prescriptions that MIGHT NOT WORK, and this will make me cry because I'd rather save the money for Christmas.
Add to this that Middl'un is already objecting to taking more medication. Because he thinks he can do it on his own. But I watch him on days without any medicine, and that child is like a pinball machine. I try to explain that I'm trying to help him succeed, and he doesn't care. I swear, he just wants to be defiant over everything.
I should add that on Monday, he and I snuggled on the couch together to watch bad cartoons. It's not all bad. (But son, please know that while I love you, I hate Bakugun.)
Tonight, we sort of made it work. I gave him my iPod while he worked on his homework. No Mozart on there, but it appeared to keep him stimulated enough to calm him down. (I think it was VNV Nation, actually.) Littlest worked on his homework beside him, and Oldest was sent to his room to read. It mostly worked, except he got hung up on a problem about counting to 1,000. Middl'un is a little obsessed with math and numbers... so yeah, THAT took a while.
The doctor called this evening and wants a new evaluation done on him. I believe it's just to compare how he's doing on these medications, but when she first mentioned it I panicked a little. Sometimes I'm afraid the pediatricians don't believe me when I explain the issues, or I tell them what we've tried. I paid to have a full evaluation done by a psychologist, so I'm always defensive when someone questions the diagnosis. Add to this that it will likely be an ordeal with the school (if I recall, the teacher has to get permission from the principal to fill out the forms), and I'm ready to burst into tears again.
I don't know if you understand why this is so hard. I love my sons like crazy. I would do anything to help them succeed. I sacrifice minutes and hours and evenings and days trying to teach them to focus, trying to help them keep their head above water at school, trying to help them manage their social skills and their way around. I help them make up calendars, remind them about assignments and folders and buy extra lunchboxes so that when the first is inevitably left behind, they'll still have something to carry.
And sometimes it's just exhausting. I'm waiting for the pay-off. Sometimes I've had it up to THERE with the latest impulsive bump or bickering or the newest melt down or the fact that I've steered someone back on task for the 15,463rd time in an evening. I've gone through reams of paper because the child is a perfectionist - a distracted, unfocused perfectionist, which is about the cruelest personality I could wish on someone, I think. I've put up with being screamed at when he hits a melt down of frustration - for he, too, hates that he can't complete things. I'm tired of the insurance companies and their stupid managed care which limits our options. I'm tired of the school, who decided that because my child was doing well-enough when his medication was working, that he didn't qualify for a Section 504/IEP. (And of course, when his medication quit working, we're back to square one.)
I get tired of explaining to friends and family that we won't be coming to a party or event, because my ADHD child can't handle it and would have a meltdown. I get tired of putting off trips to the store, because I know the stimulation of the all the people and lights and advertised cheap CRAP will just create a nightmare for us. I am tired of the countless ADHD books that I have read, all promising some cure in a matter of days, and they all give the same exact advice. I get tired of people who assume I'm just doing something wrong, that I don't discipline correctly, that I'm too lax with him, that he just needs quality time/a good strap/the right diet/a set routine/a calm environment/the right "talk"/etc.
I get tired of constantly having to reroute our lives around this disability. I am tired of the struggling and I am tired of not having something THAT WORKS.
I didn't expect parenting to be a cakewalk, but some days I feel like ADHD is this monstrous wall that we keep slamming up against. I have (had?) all these lovely fantasies of what parenting would be like. My children would be well-mannered and quiet bookworms (just like I was!), and we'd watch the Science Channel and Discovery for our TV time, and they'd prefer violins to anime any day.
Okay, so I was setting myself up for failure - but living with a child with a disability is learning to live with their constant struggle. It can be disheartening and it can be inspiring (especially when they "get it"). And somedays - today - I'm just exhausted by it.
I wish I knew the magic words/actions that would make his life easier. Sometimes this journey hurts.
For those who haven't been playing along, two of my sons have ADHD. Oldest is on a pretty even keel, and deals with distractibility and a lack of focus - but he can pretty much hold his own. At almost 11 years old, he understands his issues, and we've been able to find ways to work around his biggest productivity killers. He also uses Concerta, a common ADHD drug, to help manage his symptoms during the school year.
Middl'un, on the other hand, is battling hyperactivity and distactibility. Without medication, he's frequently off on another world. A loud, chaotic, run-around-jump-off-of-furniture-impulsive-to-the-max world. We struggle a lot with school. That's probably an understatement.
Last year he used Concerta for much of the year, and it worked beautifully up until March, which it lost its effectiveness. Since then, we've been playing the New Drug Game, which involves bribing a doctor, sleeping with an insurance agent, and a full assault by the pharmacist every time we come asking for a new stimulant.
So the '09/'10 school year starts, and I learn pretty quickly that the drug that helped us survive summer (Adderall) isn't really helping him much in school. He can't focus to complete achool assignments. Homework, which is often a worksheet and a short story, takes two and a half hours.
After some discussion with our doctor over the phone, we decided to try giving him a new dose of medication in the afternoons as a "boost" to help with homework. I ordered the medicine last Thursday. Unfortunately, it wasn't ready until after 5:30 today... which means he won't have it for school tomorrow.
I went by the school and picked up the forms so that he could have medication administered at school.
I got a note from the teacher that he is "trying, but can't seem to complete his in-class assignments". I wrote her back and told her homework was much the same. I wasn't sure what else to say. "I'm working on it." "Yo, life is hell here. Gimme a few weeks please?" "What, you can get him to complete part of it? YAY!"
With that note, I don't know if the new prescription (which is just more Adderall, in the afternoon), will do much good. Of course, I'm dreading going to the pharmacy tomorrow, because I forgot to check with the insurance company (stupid me!) about the extra dose, and they'll probably deny it JUST LIKE THEY DO EVERYTHING. And then I'll have paid a copay for two new prescriptions that MIGHT NOT WORK, and this will make me cry because I'd rather save the money for Christmas.
Add to this that Middl'un is already objecting to taking more medication. Because he thinks he can do it on his own. But I watch him on days without any medicine, and that child is like a pinball machine. I try to explain that I'm trying to help him succeed, and he doesn't care. I swear, he just wants to be defiant over everything.
I should add that on Monday, he and I snuggled on the couch together to watch bad cartoons. It's not all bad. (But son, please know that while I love you, I hate Bakugun.)
Tonight, we sort of made it work. I gave him my iPod while he worked on his homework. No Mozart on there, but it appeared to keep him stimulated enough to calm him down. (I think it was VNV Nation, actually.) Littlest worked on his homework beside him, and Oldest was sent to his room to read. It mostly worked, except he got hung up on a problem about counting to 1,000. Middl'un is a little obsessed with math and numbers... so yeah, THAT took a while.
The doctor called this evening and wants a new evaluation done on him. I believe it's just to compare how he's doing on these medications, but when she first mentioned it I panicked a little. Sometimes I'm afraid the pediatricians don't believe me when I explain the issues, or I tell them what we've tried. I paid to have a full evaluation done by a psychologist, so I'm always defensive when someone questions the diagnosis. Add to this that it will likely be an ordeal with the school (if I recall, the teacher has to get permission from the principal to fill out the forms), and I'm ready to burst into tears again.
I don't know if you understand why this is so hard. I love my sons like crazy. I would do anything to help them succeed. I sacrifice minutes and hours and evenings and days trying to teach them to focus, trying to help them keep their head above water at school, trying to help them manage their social skills and their way around. I help them make up calendars, remind them about assignments and folders and buy extra lunchboxes so that when the first is inevitably left behind, they'll still have something to carry.
And sometimes it's just exhausting. I'm waiting for the pay-off. Sometimes I've had it up to THERE with the latest impulsive bump or bickering or the newest melt down or the fact that I've steered someone back on task for the 15,463rd time in an evening. I've gone through reams of paper because the child is a perfectionist - a distracted, unfocused perfectionist, which is about the cruelest personality I could wish on someone, I think. I've put up with being screamed at when he hits a melt down of frustration - for he, too, hates that he can't complete things. I'm tired of the insurance companies and their stupid managed care which limits our options. I'm tired of the school, who decided that because my child was doing well-enough when his medication was working, that he didn't qualify for a Section 504/IEP. (And of course, when his medication quit working, we're back to square one.)
I get tired of explaining to friends and family that we won't be coming to a party or event, because my ADHD child can't handle it and would have a meltdown. I get tired of putting off trips to the store, because I know the stimulation of the all the people and lights and advertised cheap CRAP will just create a nightmare for us. I am tired of the countless ADHD books that I have read, all promising some cure in a matter of days, and they all give the same exact advice. I get tired of people who assume I'm just doing something wrong, that I don't discipline correctly, that I'm too lax with him, that he just needs quality time/a good strap/the right diet/a set routine/a calm environment/the right "talk"/etc.
I get tired of constantly having to reroute our lives around this disability. I am tired of the struggling and I am tired of not having something THAT WORKS.
I didn't expect parenting to be a cakewalk, but some days I feel like ADHD is this monstrous wall that we keep slamming up against. I have (had?) all these lovely fantasies of what parenting would be like. My children would be well-mannered and quiet bookworms (just like I was!), and we'd watch the Science Channel and Discovery for our TV time, and they'd prefer violins to anime any day.
Okay, so I was setting myself up for failure - but living with a child with a disability is learning to live with their constant struggle. It can be disheartening and it can be inspiring (especially when they "get it"). And somedays - today - I'm just exhausted by it.
I wish I knew the magic words/actions that would make his life easier. Sometimes this journey hurts.
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