"Don't Push me cuz I'm close to the edge. I'm trying not to lose my head." --GrandMaster Flash
When I'm the midst of hell...it's difficult for me to write about what's going on. Emotions run high...perspective is off kilter, my insides ...tide up in knots.
I have to keep moving...keep living, continue to take care of my family without losing it completely. I am still the center --the brains that make all of the parts move through the universe, whether I feel up to it, physically and mentally or not. This may mean that small details are forgotten. Everything may not get done, but the important stuff that absolutely has to happen gets taken care of. Children will be fed, medicines dispensed, doctor and therapy appointments maintained. Homework will be assisted, carpools will be driven. Fights will be refereed. I have to make it all happen.
I am forced to write things down sometimes in multiple places. I set reminders on wall calendars, cell-phone alarms and to-do lists. Otherwise...forget about it. We'd all be lost.
I really think my pay grade should go up for all of the work that I find myself doing. I should be paid as a doctor, a nurse, a pharmacist and medical research assistant. In the past week I have researched more about medicine than I care to remember. I have come to learn that you can not just trust the professionals. That is sad and kind of scary. What did parents do before the age of the internet? Their kids probably ended up in mental hospitals because they couldn't figure out what the f*#@ is going on. Sometimes the problem is the medication that's being subscribed. Instead of helping, it is making matters worse.
So we're going through the god-awful medication changes again with Red. Behaviors have been erratic. Anger, depression and mood swings have been challenging and nerve racking. It's really not a pretty scene when your child has grown into the size of a grown man, but still has the mind of a little boy. He is 16 and going through all of the hormonal changes of puberty. He is longing for the things that a typical 16 year-old longs for...yet, he has no idea how to get there. Not to mention, he has the maturity of about a 12 year-old.
After the cursing out teachers and making verbal threats episode at school, I decide to take him out of school for a few days, until we can see the doctor again and get him to a little more balanced place. He is home with me for 3 days of pure fun.
We see the Neurologist. He puts him on a new med that I actually agree with --Invega It is a new form of risperidal that is in an extended release formula and is known for less side effects. It should help Red with his moods. As usual...I am hopeful. Of course, I am also...desperate.
Hubby and I meet with the school staff. I find out that there have been some behaviors that are making another student, shall we say 'uncomfortable'. Great! I'm freaking out about this. This is a reoccurring issue that we have been dealing with since middle school. I'm thinking if he doesn't get this behavior under raps...sooner or later we will end up with legal bills on top of everything else. Of course there are a number of behaviors that we have to change if he will ever be able to live out in the real-world as an adult, without his mommy to protect and advocate for him. I can't even explain how much this makes me sick to my stomach with worry. He is 16! I will not always be able to protect him from the world...or even from himself!
This most recent behavior means we are going to have to take the cell phone away so that he is not barraging people with phone calls and text messages. We are going to have to take Facebook away from him for a while...as he is continually putting these inappropriate messages out there...sharing way too much information. Laying this serious guilt-trip on his friends at school. Basically, he is attempting to put the state of his mental-health in their hands. 'If people would be better friends to me...then I wouldn't feel so depressed,' is the gist of what he is saying.
He says he doesn't want them to feel sorry for him. But obviously, what he wants is attention...however he can get it. What he doesn't understand is how this is making other people feel and what thoughts they are having about him. There goes that Asperger's mind-blindness. He is laying this guilt trip out there which makes people who are trying to be a friend to him feel like, 'If I don't call, message and be there for him 110%, then he may hurt himself.' What teenager can handle that responsibility? And furthermore...why should they have to?
During this meeting with the school special education staff, we come up with a game plan that will keep Red safe and out of trouble, without totally confining him to home or one area of school all-day. They will be keeping a very watchful eye on him until things settle down with these med changes.
In the midst of this sh*# storm, I do get a small blessing. I don't know if it was God, the medicine or both. When I have the conversation about the cell phone and Facebook with Red, he agrees ...on his own, to disable his Facebook account for a while. He also agrees to delete certain phone numbers from his phone so that he will not be tempted to text message. What's more...he doesn't even seem to get depressed about it. I thought this was going to be a major fight. It was so civil and mature, I was totally caught off guard...in a good way.
So despite all of the knots in my stomach, headaches, and sleepless nights, we made it through the week from hell. The only thing I actually forgot to do during the week was to take Blue to his Art lesson.
Oh...and I never made it to my 'play hookie day'. I haven't been to the movies in an absolutely sinful amount of time. Having grown up in Los Angeles, I am usually an avid movie goer. Hopefully, I will see a few of the Oscar picks before the actual Oscar ceremony. The movie I really want to see is "Extremely Loud and Incredibly Close" but then again...I can see that live and in living color, right here in my own home.
 |
| GrandMaster Flash |
I have to keep moving...keep living, continue to take care of my family without losing it completely. I am still the center --the brains that make all of the parts move through the universe, whether I feel up to it, physically and mentally or not. This may mean that small details are forgotten. Everything may not get done, but the important stuff that absolutely has to happen gets taken care of. Children will be fed, medicines dispensed, doctor and therapy appointments maintained. Homework will be assisted, carpools will be driven. Fights will be refereed. I have to make it all happen.
I am forced to write things down sometimes in multiple places. I set reminders on wall calendars, cell-phone alarms and to-do lists. Otherwise...forget about it. We'd all be lost.
I really think my pay grade should go up for all of the work that I find myself doing. I should be paid as a doctor, a nurse, a pharmacist and medical research assistant. In the past week I have researched more about medicine than I care to remember. I have come to learn that you can not just trust the professionals. That is sad and kind of scary. What did parents do before the age of the internet? Their kids probably ended up in mental hospitals because they couldn't figure out what the f*#@ is going on. Sometimes the problem is the medication that's being subscribed. Instead of helping, it is making matters worse.
So we're going through the god-awful medication changes again with Red. Behaviors have been erratic. Anger, depression and mood swings have been challenging and nerve racking. It's really not a pretty scene when your child has grown into the size of a grown man, but still has the mind of a little boy. He is 16 and going through all of the hormonal changes of puberty. He is longing for the things that a typical 16 year-old longs for...yet, he has no idea how to get there. Not to mention, he has the maturity of about a 12 year-old.
After the cursing out teachers and making verbal threats episode at school, I decide to take him out of school for a few days, until we can see the doctor again and get him to a little more balanced place. He is home with me for 3 days of pure fun.
We see the Neurologist. He puts him on a new med that I actually agree with --Invega It is a new form of risperidal that is in an extended release formula and is known for less side effects. It should help Red with his moods. As usual...I am hopeful. Of course, I am also...desperate.
Hubby and I meet with the school staff. I find out that there have been some behaviors that are making another student, shall we say 'uncomfortable'. Great! I'm freaking out about this. This is a reoccurring issue that we have been dealing with since middle school. I'm thinking if he doesn't get this behavior under raps...sooner or later we will end up with legal bills on top of everything else. Of course there are a number of behaviors that we have to change if he will ever be able to live out in the real-world as an adult, without his mommy to protect and advocate for him. I can't even explain how much this makes me sick to my stomach with worry. He is 16! I will not always be able to protect him from the world...or even from himself!
This most recent behavior means we are going to have to take the cell phone away so that he is not barraging people with phone calls and text messages. We are going to have to take Facebook away from him for a while...as he is continually putting these inappropriate messages out there...sharing way too much information. Laying this serious guilt-trip on his friends at school. Basically, he is attempting to put the state of his mental-health in their hands. 'If people would be better friends to me...then I wouldn't feel so depressed,' is the gist of what he is saying.
He says he doesn't want them to feel sorry for him. But obviously, what he wants is attention...however he can get it. What he doesn't understand is how this is making other people feel and what thoughts they are having about him. There goes that Asperger's mind-blindness. He is laying this guilt trip out there which makes people who are trying to be a friend to him feel like, 'If I don't call, message and be there for him 110%, then he may hurt himself.' What teenager can handle that responsibility? And furthermore...why should they have to?
During this meeting with the school special education staff, we come up with a game plan that will keep Red safe and out of trouble, without totally confining him to home or one area of school all-day. They will be keeping a very watchful eye on him until things settle down with these med changes.
In the midst of this sh*# storm, I do get a small blessing. I don't know if it was God, the medicine or both. When I have the conversation about the cell phone and Facebook with Red, he agrees ...on his own, to disable his Facebook account for a while. He also agrees to delete certain phone numbers from his phone so that he will not be tempted to text message. What's more...he doesn't even seem to get depressed about it. I thought this was going to be a major fight. It was so civil and mature, I was totally caught off guard...in a good way.
So despite all of the knots in my stomach, headaches, and sleepless nights, we made it through the week from hell. The only thing I actually forgot to do during the week was to take Blue to his Art lesson.
Oh...and I never made it to my 'play hookie day'. I haven't been to the movies in an absolutely sinful amount of time. Having grown up in Los Angeles, I am usually an avid movie goer. Hopefully, I will see a few of the Oscar picks before the actual Oscar ceremony. The movie I really want to see is "Extremely Loud and Incredibly Close" but then again...I can see that live and in living color, right here in my own home.
Logging you in...
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
diyalabs6192603 11p · 192 weeks ago
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Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago