It's good to take a deep breath and a day or two of rest before you write something...especially when you're angry. I'm still not exactly happy, but I had a fabulous weekend. I had a day of rest with my best friend and my god-child --to include shopping, a few hours relaxing at the spa, dinner out with cocktails, a nice chat and dozens of laughs at the expense of our crazy life challenges. We also enjoyed a girls sleep over at the Four Seasons Hotel (her favorite) and a lovely Sunday brunch.
Sunday afternoon our family had a wonderful gathering with friends. We collaborated on a delicious, ecclectic meal, wine, desserts, music and dancing. Grandmas and grandkids danced to Al Green. Forty-something year-old adults pulled out old-school rap songs in reminiscence of younger days of partying, sans the responsibility and worries that come along with having children, and bills to pay.
I used this weekend to distance myself from the big pow-wow, non-ARD meeting last week at Red's school. It has taken me a few days and glasses of wine to help digest everything that happened or didn't happen in this meeting. I came out with some small...very small victories for Red, but I'm not done yet. There is always more work to do -seeing as he is definitely a work in progress with ebbs and flows, highs and lows, peaks and valleys.
For those of you who are not familiar, ARD is an acronym for Admission, Review, Dismissal. Basically, this meeting is to put together a plan for the year for your special needs child's education. This includes establishing an Individual Education Plan (IEP, with goals and accommodations as needed. In many cases there is also a Behavior Intervention Plan (BIP).
The reason I am calling this particular meeting a non-ARD, is because we did not accomplish any of the objectives like changing his IEP or BIP. First of all -they only scheduled an hour for the meeting. Really??? An Hour? What do you think we can accomplish in an hour other than a basic run-of-the- mill, in and out, rubber stamped, superficial meeting?
They really didn't want to talk about the incident which occurred two weeks ago which in my opinion brought us to this point. Talking about this incident and changing his plan would of course take more than an hour. In fact, they didn't seem to see how the incident that took place was intricately woven and connected to the changes that need to be made to his plan.
I realize that Red's behavior during this incident was scary-looking to other students, and totally inappropriate. Did it need to be addressed? Of course. Did there need to be consequences for the behavior? Yes -natural consequences. Natural consequence: you freak kids out with your behavior, don't expect that they will want to continue to be friends with you. You yell and scream in the hallways -don't expect that you will be able to roam the hallways without supervision. Don't expect that saying I'm sorry...will always be enough. Some people could care less that you're sorry, especially people who are not really your friends in the first place. They are teenagers. They do not understand or care that you have special needs.
Does he need to understand that this kind of behavior is unacceptable? Definitely. Should his consequences have included signing an Administrative Directive in the presence of a police officer, without the presence of one of his parents? I don't think so. Is he cognitively aware enough to understand the implications and ramifications of signing this document? No. Have they seen his test scores, evaluations or watched how slowly it takes for him to process information? Well they got a glimpse of this in the meeting.
Did he make it to a "safe place" without assistance, force or coercion from an adult? Yes he did. Once an adult in authority began talking with him, he immediately calmed down and apologized for his "angry" behavior and words. Did he know that he was wrong? Yes. Was that enough to stop him from acting impulsively? No.
The small victory that we came out with, is that the document he signed does not go in his permanent record. Supposedly, it will be destroyed at the end of the year. They can not release this document or anything in his records without my permission. Although, I still wonder what would happen if his file was subpoenaed by a court of law. I plan to get an answer to that question. (See...that's why writing is so cathartic. It helps me think.) The document is being used more as a disciplinary contract to concretely let him know that this behavior is unacceptable and that he needs to stay away from the students that he "freaked out".
The whole ordeal and the way it was handled, still leaves a bad taste in my mouth. It feels like the way it was presented, criminalizes autistic behaviors. The other thing that I'm still regurgitating is the fact that I had given them fair warning of his mood and thought process just 3 days before this incident, and yet enough precautions were not put into place to prevent it from happening. Where was the administration when they had been asked to keep a more "watchful eye" on Red just days before? No one at this meeting could answer this question.
I know this isn't a perfect world -and Red has a tendency to present his very best self to the adults there at school. The problem is when he gets away from those adults, and finds himself in a stressful situation, he can react the way that he did.
I am his mother. I know him better than anyone. I get to see the good, bad and the ugly much more so than anyone else. So when I tell you -you need to keep a watchful eye on him, you have to trust that. Now -they know. Unfortunately, he is the one who is paying all of the consequences. The good news and additional small victory for Red, is that the next time I tell them that he needs a more watchful eye than usual -THEY WILL ACTUALLY LISTEN!
There is more work to be done. I will be going through his IEP and BIP and will work with the staff to make the necessary changes. I requested a current Functional Behavior Assessment so that the BIP is appropriate to deal with his current behaviors. We will have to come together again to have the real ARD-Meeting to make appropriate changes.
One of the things I noticed in the meeting was the downplaying of the BIP. One person stated, "This is just a piece of paper. We don't take this out and read it every time we deal with Red. We are a team of human interaction and response." To that I say -well that's all wonderful and good. So why do we even have a BIP? Because when the shit hits the fan -you better have something in writing to make sure that your child's best interests are protected. Staff members come and go...teachers vary from class to class. When in doubt, they should be referring to these documents, in writing to make sure they are doing what they are supposed to do for the child.
All things happen for a reason. These bumps in the road happen to teach us something. I have learned that you can not be passive when it comes to educating and advocating for your child. You can not be afraid to ruffle a few feathers if it means that things will be better. I am not done ruffling or working out the kinks.
Of course there are three sides to every story, my side, their side and the actual truth. They have to write their own side to the story. I have to write my own truth. Hopefully, somewhere in the middle where the natural truth lies, RED will benefit from our work together.
Keep reading to see our work in progress.

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Chillaxen with my God-daughter |
I used this weekend to distance myself from the big pow-wow, non-ARD meeting last week at Red's school. It has taken me a few days and glasses of wine to help digest everything that happened or didn't happen in this meeting. I came out with some small...very small victories for Red, but I'm not done yet. There is always more work to do -seeing as he is definitely a work in progress with ebbs and flows, highs and lows, peaks and valleys.
For those of you who are not familiar, ARD is an acronym for Admission, Review, Dismissal. Basically, this meeting is to put together a plan for the year for your special needs child's education. This includes establishing an Individual Education Plan (IEP, with goals and accommodations as needed. In many cases there is also a Behavior Intervention Plan (BIP).
The reason I am calling this particular meeting a non-ARD, is because we did not accomplish any of the objectives like changing his IEP or BIP. First of all -they only scheduled an hour for the meeting. Really??? An Hour? What do you think we can accomplish in an hour other than a basic run-of-the- mill, in and out, rubber stamped, superficial meeting?
They really didn't want to talk about the incident which occurred two weeks ago which in my opinion brought us to this point. Talking about this incident and changing his plan would of course take more than an hour. In fact, they didn't seem to see how the incident that took place was intricately woven and connected to the changes that need to be made to his plan.
I realize that Red's behavior during this incident was scary-looking to other students, and totally inappropriate. Did it need to be addressed? Of course. Did there need to be consequences for the behavior? Yes -natural consequences. Natural consequence: you freak kids out with your behavior, don't expect that they will want to continue to be friends with you. You yell and scream in the hallways -don't expect that you will be able to roam the hallways without supervision. Don't expect that saying I'm sorry...will always be enough. Some people could care less that you're sorry, especially people who are not really your friends in the first place. They are teenagers. They do not understand or care that you have special needs.
Does he need to understand that this kind of behavior is unacceptable? Definitely. Should his consequences have included signing an Administrative Directive in the presence of a police officer, without the presence of one of his parents? I don't think so. Is he cognitively aware enough to understand the implications and ramifications of signing this document? No. Have they seen his test scores, evaluations or watched how slowly it takes for him to process information? Well they got a glimpse of this in the meeting.
Did he make it to a "safe place" without assistance, force or coercion from an adult? Yes he did. Once an adult in authority began talking with him, he immediately calmed down and apologized for his "angry" behavior and words. Did he know that he was wrong? Yes. Was that enough to stop him from acting impulsively? No.
The small victory that we came out with, is that the document he signed does not go in his permanent record. Supposedly, it will be destroyed at the end of the year. They can not release this document or anything in his records without my permission. Although, I still wonder what would happen if his file was subpoenaed by a court of law. I plan to get an answer to that question. (See...that's why writing is so cathartic. It helps me think.) The document is being used more as a disciplinary contract to concretely let him know that this behavior is unacceptable and that he needs to stay away from the students that he "freaked out".
The whole ordeal and the way it was handled, still leaves a bad taste in my mouth. It feels like the way it was presented, criminalizes autistic behaviors. The other thing that I'm still regurgitating is the fact that I had given them fair warning of his mood and thought process just 3 days before this incident, and yet enough precautions were not put into place to prevent it from happening. Where was the administration when they had been asked to keep a more "watchful eye" on Red just days before? No one at this meeting could answer this question.
I know this isn't a perfect world -and Red has a tendency to present his very best self to the adults there at school. The problem is when he gets away from those adults, and finds himself in a stressful situation, he can react the way that he did.
I am his mother. I know him better than anyone. I get to see the good, bad and the ugly much more so than anyone else. So when I tell you -you need to keep a watchful eye on him, you have to trust that. Now -they know. Unfortunately, he is the one who is paying all of the consequences. The good news and additional small victory for Red, is that the next time I tell them that he needs a more watchful eye than usual -THEY WILL ACTUALLY LISTEN!
There is more work to be done. I will be going through his IEP and BIP and will work with the staff to make the necessary changes. I requested a current Functional Behavior Assessment so that the BIP is appropriate to deal with his current behaviors. We will have to come together again to have the real ARD-Meeting to make appropriate changes.
One of the things I noticed in the meeting was the downplaying of the BIP. One person stated, "This is just a piece of paper. We don't take this out and read it every time we deal with Red. We are a team of human interaction and response." To that I say -well that's all wonderful and good. So why do we even have a BIP? Because when the shit hits the fan -you better have something in writing to make sure that your child's best interests are protected. Staff members come and go...teachers vary from class to class. When in doubt, they should be referring to these documents, in writing to make sure they are doing what they are supposed to do for the child.
All things happen for a reason. These bumps in the road happen to teach us something. I have learned that you can not be passive when it comes to educating and advocating for your child. You can not be afraid to ruffle a few feathers if it means that things will be better. I am not done ruffling or working out the kinks.
Of course there are three sides to every story, my side, their side and the actual truth. They have to write their own side to the story. I have to write my own truth. Hopefully, somewhere in the middle where the natural truth lies, RED will benefit from our work together.
Keep reading to see our work in progress.

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