As I stated in my blog My Life With Autism, we had a hard road to get to a diagnosis. Times they are a changing though, and people are getting better about recognizing the symptoms. I now live in a community with many options for early diagnosed Autism. Of course, as I mentioned before, they seem to stop caring after your child hits those tumultuous pre-teen/teen years. I am hoping to change that, but for now, back to our story...
My son was hospitalized for a week to stabilize him with new medications, meds that he would be starting for the first time. If I could fast forward and see how long this process really takes, I would have laughed at the doctors who think a week in a hospital will do the trick! My son was put on Risperdal. I freaked out a little bit, at first, when I read that it was commonly used to treat Schizophrenia. It is also commonly used to treat other disorders, including some of the more unsightly symptoms of Autism. When my son came home, he was new and improved! I told him to do something and he actually smiled and did it. No fights. No tantrums. He just did it, and then he had the nerve to ask "is there anything else?" I'm thinking Stepford Wives, or in this case children, maybe Invasion of the Body Snatchers. I don't know what's gone on here, but there seems to be some sort of magic involved. My son just did something after being told, while smiling, and then asked if he could do anything else? Wow! Talk about miracles!
Before I tell you how short lived this miracle was, I need to tell you how my son responded to it. I have always worried that psychiatric medicines would make him not himself. I had experience with my step-daughter's mom overdosing her on ADHD meds and she was a zombie on them. She literally would sit around my house as a child and all but drool on herself. Her mom didn't think anything was wrong with that, since it kept her kid quiet, but I was very disturbed by the effects. So, here I am faced with giving my son meds, and worried about him becoming something other than himself.
I sat him down and had a real conversation with him. I remember writing about it on my Facebook at the time, because I felt it was the first real conversation I was able to have with him. I asked how the medicine made him feel, and aside from hungry, he said he liked taking it, because it gave him that little something that made him stop and gave him time to think about what he was doing before he did it. In technical terms the medicine works to stop impulsive behaviors, such as yelling no, running away, even screaming. He was able to take a step back and tell us, "I need to go cool off before we talk." YAY! That was our miracle. The first of many tiny ones. The medicine worked, my son wasn't a zombie, life was good... almost.
One of the perks of the medicine was being able to see my son's sense of humor. He has an amazing grasp of things and is super funny. It is a trait that was lost in the misery of his disability. Seeing him laugh regularly at age 11 was amazing. Even more amazing, was that he was starting to grasp human emotion and concepts such as empathy. My first real hug from my son came around the same time. There were awkward hugs too, at inappropriate times. There were hugs that lasted too long, or squeezed to tight, or just felt weird. But - they were hugs - initiated by my son. That was the second tiny miracle. I am a huge fan of random hugs with my kids, and now I get them back from him as well.
I won't go into the details of my family's inner turmoil at this time, only to say that it was explosive, emotional, and life changing. I felt as though we were finally making great strides in my son's progress only to have them hampered by other things that were going on. My husband and I split up and having nowhere else to go at the time, I moved to South Carolina with my family. Change is not easy on children, especially children within the Autism Spectrum. While my son had been in somewhat of a decline due to the heated emotions in our home before the separation, he went into a tailspin with our move. The defiance was back, with a vengeance, the moods were worse than ever, and to top it all off he couldn't stay focused on school work long enough to write his name on the paper, let alone attempt actual work. Part of this was an ongoing problem with ADD/ADHD, which his doctors still had not started him on meds for. The other part was because the Risperdal actually causes ADHD symptoms as a side affect. This is where you pull your hair out as a parent. What do you do? Are the side effects worth the benefits of the drug? Sometimes I thought yes, other times I thought NO WAY!
Along with the Risperdal, which he was now taking 2 times a day, he was given Clonidine (which is a heart medication for adults). In children, Clonidine (small doses) helps with moods. And so it did. I was also told to give him 2,000mg of fish oil pills a day. Studies have shown that increased Omega 3s found in fish oil pills help improve symptoms for people suffering from issues like my son was. I encourage everyone to read about Omega 3s because they are a "super food." They help with your metabolism, heart, cholesterol, inflammatory diseases, the frontal lobe, memory, focus, & moods. This is a SMALL list! It expands exponentially. Anyway, so he takes those three pills every day.
It's not enough because, after a while his moods were uncontrollable again. He would cry at the drop of a hat. He was failing nearly all his classes, including science - which was always one of his best subjects. My son was melting down time and again. These melt downs effect our entire family. He will cry, scream, flail about, and it's all someone else's fault. Our family was being beaten down by one boy's tantrums. Day in and day out. It's exhausting. I can't leave the house without having at least him with me at all times, because no one else can handle him. I have become a prisoner to my son. Imagine no nights out. Imagine never having that stress relief of being able to sit back and enjoy a movie with friends, a dinner, coffee... It's not easy and his dad would not take him to give me a break either. So, I've been stuck for the better part of a year with no time off from this nightmare. He's been stuck with me too, and we pretty much resent one another from time to time. I'm being honest here. Yes, it is possible to resent your child. It is possible to hate the lot you've been given, to curse the gods (whichever ones you pray too - if any), to throw in the towel in your own mind over and over. It is possible - I have done it. And then I start all over again the next day. I can't tell you the number of times I have packed my bags and headed out on my own, abandoning my responsibilities in order for one peaceful night! I do this in my head, of course. These are my daydreams - sometimes! Then I get right back up and keep living the same responsibility laden life I have.
So, after tearful conversations with my son's therapist he was placed on Depakote, along with everything else, for his mood disorder (bipolar is now among his rather lengthy list of things that he has been labeled with.) Three months. That is how long we tried the Depakote. Three months in which we saw ZERO positive effects from it. By then, my son was in 7th grade. He scraped by and passed out of 6th grade somehow. I actually argued the fact that he should be moving on, but he managed to pass, not by much, everything except math. So, off to 7th grade and within the first 3 weeks of school this year, I was receiving calls from the school. We needed a conference because not only was my son not doing ANY work, he was sleeping through the first half of the day. That was the Depakote at work. That stuff had to go. And it did. It was replaced by Vyvanse for my son's ADHD.
WOW! Vyvanse - an amazing little pill! An expensive little pill, but well worth it. My son is not a zombie - which was my biggest fear about ADD/ADHD meds. My son is wide awake, alert, and attentive. Within 2 days of him taking Vyvanse I was getting calls from his teachers. "Whatever you have changed, keep doing it!" "He's wide awake in class now!" "He's doing his work!" "He's making "A" grades!" The best part was my son coming home, actually talking about class. He still doesn't do his homework at home, because he claims he needs more help than I can give him - of that, I have little doubt. My son's grades last year were like this: science - 69; math - 50-60s; ELA - 60-70s. This year he has a high B in almost all his classes. I'm talking 90-91, with exception of ELA which is in the 80s. Writing is his severe learning disability, so that is to be expected. And still, 80s are a huge accomplishment because it's the highest his grade has ever been in that class - EVER! That is an amazing turnaround. On top of those grades comes the most important thing. My son has his confidence back.
Things are not perfect! They will never be perfect. We are still trying to find a way to deal with the mood swings and tantrums that come with them. I don't know if new medicines will be needed, and I hope not because he takes enough of them. But I will tell you this, there was a HUGE difference in my son when the medicines were added. The worst side effect to date has been the increased appetite, and even that has balanced out. My son is not a zombie, because he has a parent and a medical professional who monitor to make sure he isn't taking too much medication. He has a great sense of humor, and is becoming an amazing student - finally! Without the medicine the potential to do well was just not there. Well, let me rephrase - the potential was there, but it was locked up and blocked from him. I don't think medicine is for everyone, but I do know that fear of the unknown is what holds a lot of parents and children back from going that route. Medicine for these conditions has advanced dramatically from the days of the zombie-children! My son praises his medicine. He came to me with a huge smile on his face when he held that first progress report of the year! I CRIED, because the words out of his mouth were priceless. "Look mom, I'm really smart like the other kids!" I had to tell him, "you've always been smart like the other kids, it was just hidden away for a while."
On the darker days, I look to those fabulous moments of triumph. I remember that first hug from my son because he knew I was sad and that it would make me feel better. I remember the look on his face when he brought me that progress report, and I know that there is hope! Whether it is achieved through medical, therapeutic, and/or other ways - there is always hope of something better for your child, no matter what difficulties they have to overcome. I try to remember those things in our darker moments and it is not always easy. Our lives will never be described as easy! One day, maybe there is hope for easier, and that is what keeps me going. So, here's my word to the wise for those of you who have read these blogs and don't have to deal with this. When you see that frazzled looking person out at the grocery store, or that kid who won't stop screaming, give them a smile instead of your disdain. That small thing in their day, can make the difference between packing those bags and throwing in the towel and making it through another day! I have been that person in the store going, "my child would never behave like that in public." I ate my words when my son came along. You never know what hand you will be dealt, so count your blessings, be thankful, and smile instead! :) We all have our bad days, but even our worst days may not compare to someone else's!
My son was hospitalized for a week to stabilize him with new medications, meds that he would be starting for the first time. If I could fast forward and see how long this process really takes, I would have laughed at the doctors who think a week in a hospital will do the trick! My son was put on Risperdal. I freaked out a little bit, at first, when I read that it was commonly used to treat Schizophrenia. It is also commonly used to treat other disorders, including some of the more unsightly symptoms of Autism. When my son came home, he was new and improved! I told him to do something and he actually smiled and did it. No fights. No tantrums. He just did it, and then he had the nerve to ask "is there anything else?" I'm thinking Stepford Wives, or in this case children, maybe Invasion of the Body Snatchers. I don't know what's gone on here, but there seems to be some sort of magic involved. My son just did something after being told, while smiling, and then asked if he could do anything else? Wow! Talk about miracles!
Before I tell you how short lived this miracle was, I need to tell you how my son responded to it. I have always worried that psychiatric medicines would make him not himself. I had experience with my step-daughter's mom overdosing her on ADHD meds and she was a zombie on them. She literally would sit around my house as a child and all but drool on herself. Her mom didn't think anything was wrong with that, since it kept her kid quiet, but I was very disturbed by the effects. So, here I am faced with giving my son meds, and worried about him becoming something other than himself.
I sat him down and had a real conversation with him. I remember writing about it on my Facebook at the time, because I felt it was the first real conversation I was able to have with him. I asked how the medicine made him feel, and aside from hungry, he said he liked taking it, because it gave him that little something that made him stop and gave him time to think about what he was doing before he did it. In technical terms the medicine works to stop impulsive behaviors, such as yelling no, running away, even screaming. He was able to take a step back and tell us, "I need to go cool off before we talk." YAY! That was our miracle. The first of many tiny ones. The medicine worked, my son wasn't a zombie, life was good... almost.
One of the perks of the medicine was being able to see my son's sense of humor. He has an amazing grasp of things and is super funny. It is a trait that was lost in the misery of his disability. Seeing him laugh regularly at age 11 was amazing. Even more amazing, was that he was starting to grasp human emotion and concepts such as empathy. My first real hug from my son came around the same time. There were awkward hugs too, at inappropriate times. There were hugs that lasted too long, or squeezed to tight, or just felt weird. But - they were hugs - initiated by my son. That was the second tiny miracle. I am a huge fan of random hugs with my kids, and now I get them back from him as well.
I won't go into the details of my family's inner turmoil at this time, only to say that it was explosive, emotional, and life changing. I felt as though we were finally making great strides in my son's progress only to have them hampered by other things that were going on. My husband and I split up and having nowhere else to go at the time, I moved to South Carolina with my family. Change is not easy on children, especially children within the Autism Spectrum. While my son had been in somewhat of a decline due to the heated emotions in our home before the separation, he went into a tailspin with our move. The defiance was back, with a vengeance, the moods were worse than ever, and to top it all off he couldn't stay focused on school work long enough to write his name on the paper, let alone attempt actual work. Part of this was an ongoing problem with ADD/ADHD, which his doctors still had not started him on meds for. The other part was because the Risperdal actually causes ADHD symptoms as a side affect. This is where you pull your hair out as a parent. What do you do? Are the side effects worth the benefits of the drug? Sometimes I thought yes, other times I thought NO WAY!
Along with the Risperdal, which he was now taking 2 times a day, he was given Clonidine (which is a heart medication for adults). In children, Clonidine (small doses) helps with moods. And so it did. I was also told to give him 2,000mg of fish oil pills a day. Studies have shown that increased Omega 3s found in fish oil pills help improve symptoms for people suffering from issues like my son was. I encourage everyone to read about Omega 3s because they are a "super food." They help with your metabolism, heart, cholesterol, inflammatory diseases, the frontal lobe, memory, focus, & moods. This is a SMALL list! It expands exponentially. Anyway, so he takes those three pills every day.
It's not enough because, after a while his moods were uncontrollable again. He would cry at the drop of a hat. He was failing nearly all his classes, including science - which was always one of his best subjects. My son was melting down time and again. These melt downs effect our entire family. He will cry, scream, flail about, and it's all someone else's fault. Our family was being beaten down by one boy's tantrums. Day in and day out. It's exhausting. I can't leave the house without having at least him with me at all times, because no one else can handle him. I have become a prisoner to my son. Imagine no nights out. Imagine never having that stress relief of being able to sit back and enjoy a movie with friends, a dinner, coffee... It's not easy and his dad would not take him to give me a break either. So, I've been stuck for the better part of a year with no time off from this nightmare. He's been stuck with me too, and we pretty much resent one another from time to time. I'm being honest here. Yes, it is possible to resent your child. It is possible to hate the lot you've been given, to curse the gods (whichever ones you pray too - if any), to throw in the towel in your own mind over and over. It is possible - I have done it. And then I start all over again the next day. I can't tell you the number of times I have packed my bags and headed out on my own, abandoning my responsibilities in order for one peaceful night! I do this in my head, of course. These are my daydreams - sometimes! Then I get right back up and keep living the same responsibility laden life I have.
So, after tearful conversations with my son's therapist he was placed on Depakote, along with everything else, for his mood disorder (bipolar is now among his rather lengthy list of things that he has been labeled with.) Three months. That is how long we tried the Depakote. Three months in which we saw ZERO positive effects from it. By then, my son was in 7th grade. He scraped by and passed out of 6th grade somehow. I actually argued the fact that he should be moving on, but he managed to pass, not by much, everything except math. So, off to 7th grade and within the first 3 weeks of school this year, I was receiving calls from the school. We needed a conference because not only was my son not doing ANY work, he was sleeping through the first half of the day. That was the Depakote at work. That stuff had to go. And it did. It was replaced by Vyvanse for my son's ADHD.
WOW! Vyvanse - an amazing little pill! An expensive little pill, but well worth it. My son is not a zombie - which was my biggest fear about ADD/ADHD meds. My son is wide awake, alert, and attentive. Within 2 days of him taking Vyvanse I was getting calls from his teachers. "Whatever you have changed, keep doing it!" "He's wide awake in class now!" "He's doing his work!" "He's making "A" grades!" The best part was my son coming home, actually talking about class. He still doesn't do his homework at home, because he claims he needs more help than I can give him - of that, I have little doubt. My son's grades last year were like this: science - 69; math - 50-60s; ELA - 60-70s. This year he has a high B in almost all his classes. I'm talking 90-91, with exception of ELA which is in the 80s. Writing is his severe learning disability, so that is to be expected. And still, 80s are a huge accomplishment because it's the highest his grade has ever been in that class - EVER! That is an amazing turnaround. On top of those grades comes the most important thing. My son has his confidence back.
Things are not perfect! They will never be perfect. We are still trying to find a way to deal with the mood swings and tantrums that come with them. I don't know if new medicines will be needed, and I hope not because he takes enough of them. But I will tell you this, there was a HUGE difference in my son when the medicines were added. The worst side effect to date has been the increased appetite, and even that has balanced out. My son is not a zombie, because he has a parent and a medical professional who monitor to make sure he isn't taking too much medication. He has a great sense of humor, and is becoming an amazing student - finally! Without the medicine the potential to do well was just not there. Well, let me rephrase - the potential was there, but it was locked up and blocked from him. I don't think medicine is for everyone, but I do know that fear of the unknown is what holds a lot of parents and children back from going that route. Medicine for these conditions has advanced dramatically from the days of the zombie-children! My son praises his medicine. He came to me with a huge smile on his face when he held that first progress report of the year! I CRIED, because the words out of his mouth were priceless. "Look mom, I'm really smart like the other kids!" I had to tell him, "you've always been smart like the other kids, it was just hidden away for a while."
On the darker days, I look to those fabulous moments of triumph. I remember that first hug from my son because he knew I was sad and that it would make me feel better. I remember the look on his face when he brought me that progress report, and I know that there is hope! Whether it is achieved through medical, therapeutic, and/or other ways - there is always hope of something better for your child, no matter what difficulties they have to overcome. I try to remember those things in our darker moments and it is not always easy. Our lives will never be described as easy! One day, maybe there is hope for easier, and that is what keeps me going. So, here's my word to the wise for those of you who have read these blogs and don't have to deal with this. When you see that frazzled looking person out at the grocery store, or that kid who won't stop screaming, give them a smile instead of your disdain. That small thing in their day, can make the difference between packing those bags and throwing in the towel and making it through another day! I have been that person in the store going, "my child would never behave like that in public." I ate my words when my son came along. You never know what hand you will be dealt, so count your blessings, be thankful, and smile instead! :) We all have our bad days, but even our worst days may not compare to someone else's!
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