I'm always trying to fix things and make them a little better, a little easier for the boys. So when Asperger's Dad announces that he is going out to get some ice-cream...I suggest that he take Red with him, to help get his mind off of his plans. Red is starting to perseverate about things not working out. He's getting louder and louder, with each repetitive statement. My husband is looking at me like I have 3 heads. You're kidding me right? Why do you want me to take him again? Oh I don't know maybe a little father and son time. They go...Red continues his rant. Dad even calls in the troops...big brother Slim Shady, to come hang with them for a bit. It's not enough for Red to enjoy the time with his dad and his brother. Instead, he spends most of the the time stuck in perseveration land.
Meanwhile, back here at the Ranch (and by ranch I mean my house which seems to be getting smaller and falling part more everyday) ...Blue is getting frustrated with his Science Project.
"It's too hard! It's just too much information to sort through on the internet. I don't understand anything! Can you just have me excused from it?"
NOT! This apparently is a major grade. We can break it down in to steps and get you some assistance, but not just blow it off. He begins the shut down process and stays mostly funky about it for the rest of the night. He snaps at me. He rolls his eyes at Nana. Nana snaps at him. Oh it's just a barrel of fun!
"It's too hard! It's just too much information to sort through on the internet. I don't understand anything! Can you just have me excused from it?"
NOT! This apparently is a major grade. We can break it down in to steps and get you some assistance, but not just blow it off. He begins the shut down process and stays mostly funky about it for the rest of the night. He snaps at me. He rolls his eyes at Nana. Nana snaps at him. Oh it's just a barrel of fun!
He goes to school the following day and continues the funkiness with his Special Education teacher who is trying to help him. It turns out that he is really much further along than he believes he is. However, he is trying to make it more complicated than it has to be. In his eyes, what he has done isn't good enough and isn't detailed enough. Apparently, his science teacher, you know the person who is grading the assignment...thinks that if he turned it in as is, he would have a 90. But that's not good enough for our mad scientist.
When his special education tracking teacher tries to hold him accountable and work with him to complete the assignment, he refuses to listen to her. He is argumentative and combative...basically, refusing to work and telling her that she is mean and not encouraging at all! When she asks him what she can do better he says, "You can leave!" Really nice!
So I spend World Autism Awareness Day in the Psychiatrists office, trying to process Blue's depression, anger and anxiety. Trying to determine if adjustments are needed in medication or if he is indeed in danger of self-harm, because he has been making statements such as, "Everything is just too hard. That's why I just want to end my life. I can't take it anymore."
It is determined that he is expressing extreme frustration and depression. The Psychiatrist is is less than thrilled that the Neurologist has changed the anti-depressant, anti-anxiety med that she had originally prescribed (which was NOT working and hadn't been for almost a year) but since I was starting to see some glimmers of hope, she decides to increase the number of milligrams he is taking, which is more in line with his weight. This, I hesitantly agree to do. As usual, she also wants to ad an additional medication to the mix (Vyanse to help with focus and his thought process). I take the prescription with the thought that I will go home, research it and decide weather or not to fill it. He's already on 2 that I don't feel all that great about. Have I told you how much I absolutely loathe the medication guinea pig, trial and error process?
I know there is much controversy about giving children psychiatric medication and I do have some ambivalence about it. To say that I have mixed emotions about it, would be an understatement. However, when your child is so anxious that he's exploding daily, or hiding in the bathroom all day because of fear of thunderstorms, when the sun is shining. When his life is seriously impaired by his depression and anxiety, and he can not work to his maximum potential at school, you do what you have to do to help him! I don't give a shit what people think!
It is determined that he is expressing extreme frustration and depression. The Psychiatrist is is less than thrilled that the Neurologist has changed the anti-depressant, anti-anxiety med that she had originally prescribed (which was NOT working and hadn't been for almost a year) but since I was starting to see some glimmers of hope, she decides to increase the number of milligrams he is taking, which is more in line with his weight. This, I hesitantly agree to do. As usual, she also wants to ad an additional medication to the mix (Vyanse to help with focus and his thought process). I take the prescription with the thought that I will go home, research it and decide weather or not to fill it. He's already on 2 that I don't feel all that great about. Have I told you how much I absolutely loathe the medication guinea pig, trial and error process?
I know there is much controversy about giving children psychiatric medication and I do have some ambivalence about it. To say that I have mixed emotions about it, would be an understatement. However, when your child is so anxious that he's exploding daily, or hiding in the bathroom all day because of fear of thunderstorms, when the sun is shining. When his life is seriously impaired by his depression and anxiety, and he can not work to his maximum potential at school, you do what you have to do to help him! I don't give a shit what people think!
He seems to be feeling better as we leave her office. He is definitely in a better mood than he was at school that morning when he was being really ugly to his teacher. This is what I mean by a glimmer of hope that this med is beginning to work. It is a beautiful spring day at about 80 degrees. There is a gentle-breeze in the air. We go have a late lunch, do a little shopping and go to his favorite place on earth...the Apple Store. We have the absolute best afternoon together. He is laughing and even joking around a bit. Something he seldom does with me these days.
We decide to take a leisurely stroll through the outdoor shopping mall. As we are walking, Red calls to remind me that he has a PCP (Person Centered Planning) meeting that starts in an hour. The PCP is basically a personal goal setting meeting to help Red work on his life dreams. I had no idea that he had confirmed the plans for the meeting with our facilitator. I have to rush home to host this meeting. I will have to write details of this meeting in another post.
The bottom line is that I spent World Autism Day, fully engrossed and Aware that Autism is a big part of our family life. It's here to stay. I take care of it. I try not to allow it to dominate our lives. I try to keep it tame, playing in the background, not allowing it to completely take control.
On World Autism Awareness day, there was no time for me to become involved in the debate that's going on in the autism community about how we feel about autism, do we hate it, love it, accept it.
I didn't have time to chime in about what Autism Speaks does or does not do for our kids. I was busy taking care of my family, trying to wrangle the autism in to submission...trying to find treasured moments, putting out fires, or at least keep them to a low smolder.
I didn't have time to chime in about what Autism Speaks does or does not do for our kids. I was busy taking care of my family, trying to wrangle the autism in to submission...trying to find treasured moments, putting out fires, or at least keep them to a low smolder.
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