The alarm sounds off...he crosses the room to turn it off and crawls back into bed. I enter the room a few minutes later he is dead to the world...back into a deep slumber. I tap him gently, "Good morning...today's the field trip. Time to get up."
"I changed my mind. I don't want to go." His eyes are still closed as he speaks in a drunken slur.
"Well...that's not really an option. Come on wake up." His eyes do not budge.
"Can I have a hug?" I ask. His eyes flicker. Hmm...I have his interest. He still loves a hug from his mama. This actually gets him to open his eyes slightly.
"I need help to get up," he says as he reaches towards me.
I take his hand. There is no way that I can really help lift his enormous body. He pulls himself up and gives me a hug. I scratch his back and his scalp briefly, trying to give him sensory stimuli to help him wake up. Finally...he is awake.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I've been in stress and panic mode for the past three weeks really. Having him change campuses within the district was put on the table in our last ARD/IEP meeting. The word change and Aspergers teen within the same sentence is a recipe for explosion and disaster. The very thought of this possibility has had him on edge for the past 2 weeks. This tension and being on edge looks better than it did last spring where he would have been screaming and aggressive...so I'll count my blessing for that.
We finally have the big ARD/IEP meeting yesterday. He walks into the room full adults, administrators and teachers and immediately lets everyone there know he definitely does not want to go to that other school and all of the reasons why. He punctuates his thoughts with, "That school is ghetto!" Of course he has no idea what "ghetto" really is. Because this suburban school is definitely not that. It is his home campus...the school that his older brother graduated from. Last night I ask him, "So does that mean your brother is ghetto...because he played football and graduated from there?"
"Uh...no. HE isn't. But a lot of kids there are."
Of course this is his own quirky perception along with a few extremely negative comments coming from a friend. Does this friend go said school? No. Does he even go to high school? No. So how does he know how "Ghetto" this school is? He doesn't...but of course, he has Red convinced.
The meeting totally sucks! The ARD/IEP Coordinator is rude and abrupt. She starts off by letting us all know how little time we have to get this done (less than 45 minutes). The special education teacher races through the FBA (functional behavior analysis) and testing results so fast I couldn't see straight. Of course, I interject with several questions that I'm not sure were ever answered to any level of satisfaction. My husband is sitting there basically, Mr. Happy-go-lucky schmoozer that he is. He does ask for them to step up and get Red some reading supports. We are not happy with his academic progress at all. At the end, the Coordinator abruptly tries to end the meeting while the Special Education Lead from his home campus is still trying to speak. I want to reach across the table and slap her.
I leave the meeting not agreeing to anything. I sign that I was in attendence but do not fully understand everything that was presented. I have 5 school days to get back to them with any changes that I want. Boy do I want changes! I am so done with this school...and last night after a pretty good sales job on my part with Red, I think he may be done as well.
Stay tuned...I don't want to say right now exactly what our game plan is because I don't want to jinx anything. Let's suffice it to say...things are looking up and I am hopeful.
"I changed my mind. I don't want to go." His eyes are still closed as he speaks in a drunken slur.
"Well...that's not really an option. Come on wake up." His eyes do not budge.
"Can I have a hug?" I ask. His eyes flicker. Hmm...I have his interest. He still loves a hug from his mama. This actually gets him to open his eyes slightly.
"I need help to get up," he says as he reaches towards me.
I take his hand. There is no way that I can really help lift his enormous body. He pulls himself up and gives me a hug. I scratch his back and his scalp briefly, trying to give him sensory stimuli to help him wake up. Finally...he is awake.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I've been in stress and panic mode for the past three weeks really. Having him change campuses within the district was put on the table in our last ARD/IEP meeting. The word change and Aspergers teen within the same sentence is a recipe for explosion and disaster. The very thought of this possibility has had him on edge for the past 2 weeks. This tension and being on edge looks better than it did last spring where he would have been screaming and aggressive...so I'll count my blessing for that.
We finally have the big ARD/IEP meeting yesterday. He walks into the room full adults, administrators and teachers and immediately lets everyone there know he definitely does not want to go to that other school and all of the reasons why. He punctuates his thoughts with, "That school is ghetto!" Of course he has no idea what "ghetto" really is. Because this suburban school is definitely not that. It is his home campus...the school that his older brother graduated from. Last night I ask him, "So does that mean your brother is ghetto...because he played football and graduated from there?"
"Uh...no. HE isn't. But a lot of kids there are."
Of course this is his own quirky perception along with a few extremely negative comments coming from a friend. Does this friend go said school? No. Does he even go to high school? No. So how does he know how "Ghetto" this school is? He doesn't...but of course, he has Red convinced.
The meeting totally sucks! The ARD/IEP Coordinator is rude and abrupt. She starts off by letting us all know how little time we have to get this done (less than 45 minutes). The special education teacher races through the FBA (functional behavior analysis) and testing results so fast I couldn't see straight. Of course, I interject with several questions that I'm not sure were ever answered to any level of satisfaction. My husband is sitting there basically, Mr. Happy-go-lucky schmoozer that he is. He does ask for them to step up and get Red some reading supports. We are not happy with his academic progress at all. At the end, the Coordinator abruptly tries to end the meeting while the Special Education Lead from his home campus is still trying to speak. I want to reach across the table and slap her.
I leave the meeting not agreeing to anything. I sign that I was in attendence but do not fully understand everything that was presented. I have 5 school days to get back to them with any changes that I want. Boy do I want changes! I am so done with this school...and last night after a pretty good sales job on my part with Red, I think he may be done as well.
Stay tuned...I don't want to say right now exactly what our game plan is because I don't want to jinx anything. Let's suffice it to say...things are looking up and I am hopeful.
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