Well the first try on the medication with Blue didn't go so well -big surprise. I hate Psychiatry and the whole trial and error bull that goes along with it...especially when it comes to my child! But when your child is unraveling before your eyes, feeling helpless and suicidal -you're willing to pull out every possible tool from the toolbox to try and fix it. You just have to be agile, play very close attention and stay in very close contact with the doctor.
This past weekend was just a barrel of fun. I watched him go from a pretty fun-loving kid into his angry,"Blue" alter ego in a matter of moments. It was a beautiful, sunny, quiet Sunday morning.We had a lovely, leisurely, family Sunday brunch planned at a local seafood restaurant. My mouth was watering in anticipation of a long casual meal that would be followed by a lack of Sunday dinner cooking. (NOT!) Instead we had to corral our little boy back home. He decided to run away because his life is so horrible.
"This is all your fault! You're not making it any better! Why is this happening to me? Why does God hate me?" This started over a weather report of rain that was over 300 miles away and had a zero percent chance of coming to our area. I don't know if he heard that part, and he certainly didn't believe me when I said it.
Nothing was right for the rest of the day. I think he finally sat down and watched a movie with his Dad later that evening. However, the rest of us all remained the enemy until bedtime. We were on lock down -no family fun to be had.
Monday morning was met first with a 'parents appointment' with the boy's therapist. A 45 minute session that one of the parents showed up 30 minutes late for. No -I was not that parent. It was the one who needed the appointment the most who showed up late. How did I get two difficult children off to school, drive all the way downtown to meet a friend for breakfast and return her cell phone that her baby girl had slipped into my purse a few days earlier, and still make it to the appointment on time?
"Well -I do have a job you know."
Yes -so do I. Unfortunately, it's not of the paying kind.It does however have a fair share of grunt work!
"But you put this appointment on your calendar a week ago," I reply.
"That doesn't stop the phone from ringing," he says calmly.
"But it should have stopped you from picking it up," I say trying not to sound as highly pissed as I am.
"Well -what did he say (meaning the therapist) that was new?" Wow!
In other words -did I really miss anything important?
After that appointment, I took a little "me time"to decompress at TJ Maxx -the best therapy of all. I found a bottle of "DKNY Be Delicious" because I am -delicious, therefore I deserve this. I walked around for an hour before I could decide if I should spend $30.00 on the $50.00 bottle that I've been wanting since like 2 years ago when I ran out of it. Yes -it did make it home to my vanity.
At 1 p.m. I high tail it over to the middle school to pick up "Blue" for his appointment with the Pediatric Psychiatrist. On our way to the appointment, he told me about a video he watched about children in Africa at school. A light bulb went on for him. He assessed, "Those kids don't have hardly anything, but they are still happy. Americans are really spoiled! We have everything and yet people still complain -like my brother, he's never happy with what he gets. I want to figure out a way to make things more equal for everyone. I have to find a way to change the world.” This alone –made my day. Watch out Barack Obama!
Once we arrived at our appointment, Blue very eloquently told the doctor exactly what has been going on for the past two weeks since we saw them last.
"I thought I was doing better, and then I realized it wasn't the medicine that was making me better. It was just me. Somehow when I got home after school, I didn't feel better anymore. By Friday, I really felt worse. I started drawing on my body where I wanted to cut myself." Heartbreak. Of course, that was the end of that trial with Zoloft. We were given a new medication to try. I am not thrilled about this prospect, but you gotta do what you gotta do.
After we left the doctor, the day was so beautiful. The sky dazzled a hypnotic blue. There were zero clouds, and it was a sweet 75 degrees. We just didn’t want to go home and be between four walls when we could be out absorbing the sun. Off we went to our favorite outdoor shopping area –The Domain where walked and talked. He stopped into his favorite store to browse. That would be the Apple store.
Just as we are contemplating stopping for a bite to eat, my cell phone rings. Home…I ignore it. That usually means my son who wants to bug me about something unnecessary. The message is from my mom.
My husband is in really bad shape and needs me to take him to the doctor. Mind you –he’s been sick for going on two weeks. He was scheduled to leave town again the following day. I had insisted that he see a doctor before the trip because he has had this congestion for so long. Good thing he had that appointment scheduled for that evening. He came home with a high fever, body aches and the whole shebang all over again.
This meant I was off -back across town to pick up my husband for my third doctor’s appointment of the day. As it turns out, he has the flu. There would be no flight the following day. He would have his butt in bed, recuperating, like he’d been refusing to do for the past two weeks. I stop to get his medicine, Gatorade, soup and ibuprofen. I will be playing nurse Ratched for the next couple of days. All while playing Psychiatrist, Therapist, Driver, Cook and Maid.
Flippantly –my 22 year old son says to me last week, “Maybe if you got a job outside of the house…Dad wouldn’t have to work so hard.” I wanted to slap him back into the future where he would have his own difficult children…and maybe he would catch a glimpse of how much it takes to raise them. THIS IS A FULL-TIME JOB! I have three children to care for (including my husband). I add my 71 year old mother that mix. I am responsible for taking her to the doctor, dentist, grocery shopping, and to get her hair done (which is much more often than I get my own hair done mind you.)
Just call me nurse Ratched running the crazy ward –only I’m a lot nicer, at least most of the time.
Not the expert mom with all the answers...the mom who can't stop looking for them.
Wednesday, October 6, 2010
Nurse Ratched
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Comments by IntenseDebate
Posting anonymously.
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.
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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