Editorial Note: This is a revised post that I wrote in September 2010. I post it today because of a heated discussion on the decision to medicate on my "Confessions" Facebook Community Page last night. The decision to medicate your child is an agonizing one. When you feel like your back is against the wall, and you physically feel the pain that your child is going through, you do whatever you can to make things better. I loathe the trial and error process of finding what works. But we did find something that made my son's 1st year in middle school successful and happy. Now half-way into his 7th grade year, we find ourselves challenged agin with his overwhelming anxiety which leads to depression.
Unfortunately, today we are back to the drawing board. It is my hope that people don't judge other parents for what the choose to do with this heart wrenching decision. Personally, I don't really care about judgement. If I did...I would never have written my first post on this blog. I do what I have to do to help my children, to educate others about our journey, and to help parents of children on the spectrum feel less alone.
Here you go...
September, 2010
I haven't written much about little boy Blue lately. The truth is, what has been going on is extremely personal and so painful it's difficult to put down in words. It's bad enough that the thoughts and feelings have been swimming around in my head and weighing on my heart. However -if our journey can help someone, it will not have been in vain. This is our story...
Blue has always been my easy child, even though he isn't really easy. I've seen people with "easy" children and sad to say, sometimes, I envy them. Blue is unique. He is special. He is a brilliant, deep thinker, who asks questions that I would never think of, much less be able to answer. Even when I do, he tells me that I am wrong. Those "easy", ordinary children may be easier to parent, but will they grow up and make the world a better place? Perhaps. My son's brilliant mind, and out-of-box thinking will serve him well in his future. I just have to make sure he makes it there.
He has always been challenging, but in comparison to how difficult his brother is to raise, he is a breath of fresh air. He has a good heart, with compassion for others. He is thoughtful -remembering my favorite flowers and making sure that his father would take him out to get them on my birthday. His brother won't even sing "Happy Birthday" to me, make or buy me a card unless coerced. Blue comes downstairs on Saturday and Sunday and asks everyone what they would like for breakfast. He starts making homemade waffles or pancakes, whether we want them or not. I love that he wants to cook. I would just rather not deal with the mess.
In the past six to 12 months however, this sweet kid can quickly turn into a little venom spitting little monster. That lovely breakfast he's preparing can turn into a meltdown over when to make the eggs. "You guys think I'm stupid! I don't know anything! Just forget it! I'm not eating! I'm not cooking! Just leave me alone! This is all your fault!"
He absolutely loathes the very sight and definitely the sound of his brother. His mere presence in the room can lead to screaming, hitting, and arguing. He has to put on ear plugs so that he doesn't have to hear him chewing, singing or breathing. He wants to control his brother's every move. He doesn't want him "eating up all of our food!" He doesn't want him to bite his nails. Typical sibling issues turn into knock down drag out fights, where it's literally like David vs. Goliath, but Blue is so angry that he doesn't care how big Goliath is. He will go up and just whack, punch or kick him, not thinking about what the ramifications could be of attacking someone twice his size, who is also not exactly known for his self-control. We haven't been able to do things as an entire family lately. If we do it's definitely not going to be fun. In fact, we took separate vacations this summer. It just seemed like such a waste of money to go on vacation to have a horrible time.
His tears have been infinite. His anxiety is like an overgrown garden full of weeds. The fear of storms is off the charts. It has become impairing to the point of his not wanting to leave the house for days on end. He is hiding out in his safe-place at the least little threat of showers. There are days he's hiding when the sun is shining.
We have tried our best to avoid going down the road of medication, but it was becoming very apparent that he could not manage his emotions and anxiety on his own. He is so bright and imaginative, I think my husband feared that somehow his personality would be impacted. There is always a fear and stigma in the back of our minds when it comes to mental health medications. We want to believe that we are strong enough or smart enough to conquer our own problems. The truth is that it is medicine indicates illness. We don't hesitate to treat any physical illness our children have. Why do we hesitate to treat illness of the mind or chemical imbalances? I don't why there is this reticence, but I know that it's there. However when your child in such pain and agony, you feel like you have to do whatever you can to help them.
Blue was evaluated and it was determined that the best option for him would be a low dosage of Zoloft. It is supposed to help with the mood, the anxiety, and obsessiveness that is typical of a child with Aspergers. It was also suggested that we try something else to help him with agitation. I opted out of starting with two medicines. I wanted to go with the one to see how that would help or not. It was a hard enough decision to have him taking anything at all. They did suggest that I keep a close eye on him when he started taking it to ensure that there was no suicidal ideation.
I had plans to go away for the weekend with my husband. We had not been connecting lately. Stress levels in our house were palpable. I had been terribly depressed by watching my sweet child unravel before my eyes while feeling helpless to help him. I was walking on egg shells trying not to piss him off. I was constantly on call for breaking up a fight. I was physically and mentally drained. I needed this trip! I informed the doctor of my impending travel plans. She suggested that we wait until I returned to start the med.
Wednesday night I had a conversation with the boys about expectations for behavior while I am away. Thursday morning, they actually sent me off with a bang. They were talking to each other and getting along great. I felt good about leaving. That is until I got the phone call...
The sun was shining as the van pulled into the airport. I was feeling about ten pounds lighter as I walked through the airport doors -and then the cell phone rings. It's the middle school. Blue is in the office with the school Psychologist because of a paper he has written which says he feels like his life is so horrible he wants to end it. Pow! Punch to the stomach. The wind in my sails stopped blowing, the air was still. My heart is pounding like I just ran a mile, minus the endorphins. I'm standing there like a deer in the headlights in front of security. How can I possibly go through and get on a plane?
"Mrs. W., we've spoken to Blue and he is not backing down about how he is feeling. At this point we are thinking we need to call the county mental health evaluation team to assess him, to see if he needs to go to the hospital. What the hell? He was fine when he said good bye this morning? Suddenly, I remembered, the evaluation process the previous week. They had asked him some very pointed questions about self-harm. He admitted that in anger he has said, "I just want to kill myself!" I always thought it was dramatic imitation of his brother who has shouted such things in the past. In my gut, I knew that neither of them really wanted to hurt themselves. They were in pain and felt helpless. It was a way to express how much pain they were feeling. It seemed to me that those pointed questions got him to seriously thinking about ending his life.
I talked to him over the phone and express to him how much I love him -how much his entire family loves him. I remind him of the support he has there at school -how smart he is and how impressed his teachers are with him. "I know that you're feeling really down right now, but I promise you things will get better. We are going to try that new medicine next week, and it will help you feel better. In the mean time tell me what you need to get you through the day? Would you like to stay with your support teacher in her room today?" I reminded him of the great weekend he had planned with his best friend -giving him something to look forward to.
It takes some work, but after thirty-minute exchange, he seems to feel better and more optimistic. Together, we come up with a plan to get through the day and through the weekend. It was still difficult to go get on that plane. My heart was definitely pulled toward home and my son. At the same time, my husband and I so needed to reconnect, and I needed to rejuvenate, before I lost what is left what is left of my own sanity.
I am a woman on the edge. Like my son's favorite group Linkin Park, sings, "Everything you say to me, pushes me one step closer to the edge and I'm about to break!" I have to take care of myself in order to take care of my boys. I also have to take care of my marriage so that my husband and I can work together to parent them as a team.
I left him in the hands of my capable mother who supported him through a difficult few days. I knew that she wouldn't let anything happen to him. I called constantly to check on him -never receiving any positive news, but he was surviving. My heart ached for him. He passed on the opportunity to go spend the night with his best friend because of the possibility of inclement weather. He then became angry with my mom and himself because he felt sad, lonely and isolated. He felt awful about himself for letting the anxiety control him. I prayed for him incessantly and we both made it through.
On Sunday our flight was canceled, then another one was delayed. By the time we made it to Dallas, there were no more flights coming to Austin. There was no way I wasn't going to be there when he woke up Monday morning. We rented a car and drove three hours to make it home by 1:30 a.m. We started the Zoloft that morning as planned, and though it supposed to take time to build up in his system, he seemed to be in a better mood when he got home Monday afternoon.
I am ambivalent, optimistic and hopeful. One thing I know for sure...this boy is special beyond measure. As I've heard Oprah say many times, "His future is so bright it burns my eyes."
Unfortunately, today we are back to the drawing board. It is my hope that people don't judge other parents for what the choose to do with this heart wrenching decision. Personally, I don't really care about judgement. If I did...I would never have written my first post on this blog. I do what I have to do to help my children, to educate others about our journey, and to help parents of children on the spectrum feel less alone.
Here you go...
September, 2010
I haven't written much about little boy Blue lately. The truth is, what has been going on is extremely personal and so painful it's difficult to put down in words. It's bad enough that the thoughts and feelings have been swimming around in my head and weighing on my heart. However -if our journey can help someone, it will not have been in vain. This is our story...
Blue has always been my easy child, even though he isn't really easy. I've seen people with "easy" children and sad to say, sometimes, I envy them. Blue is unique. He is special. He is a brilliant, deep thinker, who asks questions that I would never think of, much less be able to answer. Even when I do, he tells me that I am wrong. Those "easy", ordinary children may be easier to parent, but will they grow up and make the world a better place? Perhaps. My son's brilliant mind, and out-of-box thinking will serve him well in his future. I just have to make sure he makes it there.
He has always been challenging, but in comparison to how difficult his brother is to raise, he is a breath of fresh air. He has a good heart, with compassion for others. He is thoughtful -remembering my favorite flowers and making sure that his father would take him out to get them on my birthday. His brother won't even sing "Happy Birthday" to me, make or buy me a card unless coerced. Blue comes downstairs on Saturday and Sunday and asks everyone what they would like for breakfast. He starts making homemade waffles or pancakes, whether we want them or not. I love that he wants to cook. I would just rather not deal with the mess.
In the past six to 12 months however, this sweet kid can quickly turn into a little venom spitting little monster. That lovely breakfast he's preparing can turn into a meltdown over when to make the eggs. "You guys think I'm stupid! I don't know anything! Just forget it! I'm not eating! I'm not cooking! Just leave me alone! This is all your fault!"
He absolutely loathes the very sight and definitely the sound of his brother. His mere presence in the room can lead to screaming, hitting, and arguing. He has to put on ear plugs so that he doesn't have to hear him chewing, singing or breathing. He wants to control his brother's every move. He doesn't want him "eating up all of our food!" He doesn't want him to bite his nails. Typical sibling issues turn into knock down drag out fights, where it's literally like David vs. Goliath, but Blue is so angry that he doesn't care how big Goliath is. He will go up and just whack, punch or kick him, not thinking about what the ramifications could be of attacking someone twice his size, who is also not exactly known for his self-control. We haven't been able to do things as an entire family lately. If we do it's definitely not going to be fun. In fact, we took separate vacations this summer. It just seemed like such a waste of money to go on vacation to have a horrible time.
His tears have been infinite. His anxiety is like an overgrown garden full of weeds. The fear of storms is off the charts. It has become impairing to the point of his not wanting to leave the house for days on end. He is hiding out in his safe-place at the least little threat of showers. There are days he's hiding when the sun is shining.
We have tried our best to avoid going down the road of medication, but it was becoming very apparent that he could not manage his emotions and anxiety on his own. He is so bright and imaginative, I think my husband feared that somehow his personality would be impacted. There is always a fear and stigma in the back of our minds when it comes to mental health medications. We want to believe that we are strong enough or smart enough to conquer our own problems. The truth is that it is medicine indicates illness. We don't hesitate to treat any physical illness our children have. Why do we hesitate to treat illness of the mind or chemical imbalances? I don't why there is this reticence, but I know that it's there. However when your child in such pain and agony, you feel like you have to do whatever you can to help them.
Blue was evaluated and it was determined that the best option for him would be a low dosage of Zoloft. It is supposed to help with the mood, the anxiety, and obsessiveness that is typical of a child with Aspergers. It was also suggested that we try something else to help him with agitation. I opted out of starting with two medicines. I wanted to go with the one to see how that would help or not. It was a hard enough decision to have him taking anything at all. They did suggest that I keep a close eye on him when he started taking it to ensure that there was no suicidal ideation.
I had plans to go away for the weekend with my husband. We had not been connecting lately. Stress levels in our house were palpable. I had been terribly depressed by watching my sweet child unravel before my eyes while feeling helpless to help him. I was walking on egg shells trying not to piss him off. I was constantly on call for breaking up a fight. I was physically and mentally drained. I needed this trip! I informed the doctor of my impending travel plans. She suggested that we wait until I returned to start the med.
Wednesday night I had a conversation with the boys about expectations for behavior while I am away. Thursday morning, they actually sent me off with a bang. They were talking to each other and getting along great. I felt good about leaving. That is until I got the phone call...
The sun was shining as the van pulled into the airport. I was feeling about ten pounds lighter as I walked through the airport doors -and then the cell phone rings. It's the middle school. Blue is in the office with the school Psychologist because of a paper he has written which says he feels like his life is so horrible he wants to end it. Pow! Punch to the stomach. The wind in my sails stopped blowing, the air was still. My heart is pounding like I just ran a mile, minus the endorphins. I'm standing there like a deer in the headlights in front of security. How can I possibly go through and get on a plane?
"Mrs. W., we've spoken to Blue and he is not backing down about how he is feeling. At this point we are thinking we need to call the county mental health evaluation team to assess him, to see if he needs to go to the hospital. What the hell? He was fine when he said good bye this morning? Suddenly, I remembered, the evaluation process the previous week. They had asked him some very pointed questions about self-harm. He admitted that in anger he has said, "I just want to kill myself!" I always thought it was dramatic imitation of his brother who has shouted such things in the past. In my gut, I knew that neither of them really wanted to hurt themselves. They were in pain and felt helpless. It was a way to express how much pain they were feeling. It seemed to me that those pointed questions got him to seriously thinking about ending his life.
I talked to him over the phone and express to him how much I love him -how much his entire family loves him. I remind him of the support he has there at school -how smart he is and how impressed his teachers are with him. "I know that you're feeling really down right now, but I promise you things will get better. We are going to try that new medicine next week, and it will help you feel better. In the mean time tell me what you need to get you through the day? Would you like to stay with your support teacher in her room today?" I reminded him of the great weekend he had planned with his best friend -giving him something to look forward to.
It takes some work, but after thirty-minute exchange, he seems to feel better and more optimistic. Together, we come up with a plan to get through the day and through the weekend. It was still difficult to go get on that plane. My heart was definitely pulled toward home and my son. At the same time, my husband and I so needed to reconnect, and I needed to rejuvenate, before I lost what is left what is left of my own sanity.
I am a woman on the edge. Like my son's favorite group Linkin Park, sings, "Everything you say to me, pushes me one step closer to the edge and I'm about to break!" I have to take care of myself in order to take care of my boys. I also have to take care of my marriage so that my husband and I can work together to parent them as a team.
I left him in the hands of my capable mother who supported him through a difficult few days. I knew that she wouldn't let anything happen to him. I called constantly to check on him -never receiving any positive news, but he was surviving. My heart ached for him. He passed on the opportunity to go spend the night with his best friend because of the possibility of inclement weather. He then became angry with my mom and himself because he felt sad, lonely and isolated. He felt awful about himself for letting the anxiety control him. I prayed for him incessantly and we both made it through.
On Sunday our flight was canceled, then another one was delayed. By the time we made it to Dallas, there were no more flights coming to Austin. There was no way I wasn't going to be there when he woke up Monday morning. We rented a car and drove three hours to make it home by 1:30 a.m. We started the Zoloft that morning as planned, and though it supposed to take time to build up in his system, he seemed to be in a better mood when he got home Monday afternoon.
I am ambivalent, optimistic and hopeful. One thing I know for sure...this boy is special beyond measure. As I've heard Oprah say many times, "His future is so bright it burns my eyes."
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