This is a previous post that I revised today. I still feel a lot of this pain. I continue to move through it. A mama's got to do what a mama's got to do...
Imagine hearing your child say "pull the car over on the highway so I can get out and a car can hit me."
Imagine your child having a nose bleed and saying, "Just let me bleed. I want to die."
Imagine the pain of hearing your child say, "My life is horrible!" almost every day.
Imagine the pain of rarely seeing your child smile.
Imagine the pain of hearing your child say, "I don't have any friends at school."
Imagine the pain of hearing your child say, "No one cares about me."
Imagine the pain of hearing your child say, "I just want to laugh like all the other kids...but I can't."
Imagine the pain of hearing your child say, "I don't think I'm going to have a good life when I grow up. I think I'm going to end up in jail, or living on the streets. I don't think I'll ever have a wife or a girlfriend."
Imagine running all over town taking your child to therapists, doctors, counselors, camps, social skills programs, reading everything you can get your hands on about autism and Aspergers --advocating for him at school --only to hear him say, "You just want me to be miserable don't you."
Imagine hearing yourself say, "You have to love yourself before you can expect others to love you" yet feeling deep inside that he may never learn to love himself.
Imagine the sting of the words, "Below grade level" in reference to your child whom you know is highly intelligent, but unable to work to his full potential because of stress, and depression.
Imagine the pain of deciding between stigma and getting the your child the help he really needs.
Imagine talking to a school administrator, or school psychologist -hearing them say, "He may NEVER get it completely."
Imagine the pain of getting the phone call, "The school officer had to be called for your son today."
Imagine the pain of watching your little fish swim in the big ocean called a public high-school, where you know that he isn't equipped to protect himself, even from himself, afraid he'll be eaten by the sharks or swallowed up in the tide.
Imagine the pain of being in high-school and not having one person you can say is your true friend.
Imagine the pain of watching groups of kids hanging out together, laughing and joking, enjoying their school experience, while you wonder aimlessly alone -every excruciating day.
Imagine that there are thousands of unwritten rules that you are supposed to follow -but it's like your in a foreign land and you don't know the language.
Imagine trying medication after medication, with ambivalence because you don'y want to medicate your child in the first place.
Imagine dealing with the side effects of psychotropic drugs, having them make matters worse instead of better. Then trying another and another having it work for a while and then having to start that cycle over again.
Imagine the pain of wondering every single day, if you're doing the right thing. Are you making the right choices for your child?
Imagine wondering if you will EVER see your child truly happy.
________________________________________________________

Imagine hearing your child say "pull the car over on the highway so I can get out and a car can hit me."
Imagine your child having a nose bleed and saying, "Just let me bleed. I want to die."
Imagine the pain of hearing your child say, "My life is horrible!" almost every day.
Imagine the pain of rarely seeing your child smile.
Imagine the pain of hearing your child say, "I don't have any friends at school."
Imagine the pain of hearing your child say, "No one cares about me."
Imagine the pain of hearing your child say, "I just want to laugh like all the other kids...but I can't."
Imagine the pain of hearing your child say, "I don't think I'm going to have a good life when I grow up. I think I'm going to end up in jail, or living on the streets. I don't think I'll ever have a wife or a girlfriend."
Imagine running all over town taking your child to therapists, doctors, counselors, camps, social skills programs, reading everything you can get your hands on about autism and Aspergers --advocating for him at school --only to hear him say, "You just want me to be miserable don't you."
Imagine hearing yourself say, "You have to love yourself before you can expect others to love you" yet feeling deep inside that he may never learn to love himself.
Imagine the sting of the words, "Below grade level" in reference to your child whom you know is highly intelligent, but unable to work to his full potential because of stress, and depression.
Imagine the pain of deciding between stigma and getting the your child the help he really needs.
Imagine talking to a school administrator, or school psychologist -hearing them say, "He may NEVER get it completely."
Imagine the pain of getting the phone call, "The school officer had to be called for your son today."
Imagine hearing a school psychologist or teacher say, "We want him to get this now, when he's still in high school, so that he doesn't end up dealing with the police when he's an adult and they don't care that he has a disability."
Imagine cringing every time the phone rings and you see your child's school on the caller I.D. What did he do now?Imagine the pain of watching your little fish swim in the big ocean called a public high-school, where you know that he isn't equipped to protect himself, even from himself, afraid he'll be eaten by the sharks or swallowed up in the tide.
Imagine the pain of being in high-school and not having one person you can say is your true friend.
Imagine the pain of watching groups of kids hanging out together, laughing and joking, enjoying their school experience, while you wonder aimlessly alone -every excruciating day.
Imagine that there are thousands of unwritten rules that you are supposed to follow -but it's like your in a foreign land and you don't know the language.
Imagine trying medication after medication, with ambivalence because you don'y want to medicate your child in the first place.
Imagine dealing with the side effects of psychotropic drugs, having them make matters worse instead of better. Then trying another and another having it work for a while and then having to start that cycle over again.
Imagine the pain of wondering every single day, if you're doing the right thing. Are you making the right choices for your child?
Imagine wondering if you will EVER see your child truly happy.
________________________________________________________
"All those crazy nights when I cried myself to sleep
Now melodrama never makes me weep anymore
'Cause I haven't got time for the pain
I haven't got room for the pain
I haven't the need for the pain"
-Carly Simon/Jacob Brackman

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 · 121 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