His eyes were glazed, he was not himself. He was not the boy that I know and love. Things didn't get any better in the days that followed this massive meltdown. Everyone in this entire house was on egg shells for days. We all took turns leaving the house to get some relief from the incessant talking, arguing and complaining and screaming. I wish I could play a tape of this huge 200 pound boy screaming like a rock star -only there was no musicality. We all prayed that he wouldn't get wound up each evening as we were all winding down with extreme fatigue.
For months I've been frustrated with the medication process. The trial and error. Adding this, taking away that. Nothing making things better, some making things worse. The last medication change seemed to make him more agitated than ever. I wanted a clean slate. A clean canvas to paint on, to add each color one layer at time until we had just the right mix --the work of art that I know he can be. I wanted a clear picture of what is really going on inside that body and that mind of his. Is this Aspergers? Is there something more? I wanted answers. I wanted something to help him, to help all of us. I wanted a miracle. To find it we would have to do something drastic.
I didn't want to make these changes in a hospital setting, yet I was too worn out to fight the inevitable. When the aggression became physically dangerous, when there was damage to our home, threats to my younger son and physical posturing towards me...I knew I had no choice. When the raging late at night put all so on edge that we could not sleep a wink all night. I realized...something had to give. We all have the right have peace in our home. We could not allow one person's mental issues to hold us all hostage.
Who ever thought I would have to make such a torturous decision? It certainly is not a part of any dream I have for my children. Of course I never dreamed that high school would be a place of pain and anguish for my child. I just assumed I would have a "Cosby" family full of happy children, whom I would love, nurture and push to their highest potential. None of that dream included therapy and medications during their adolescent years.
He couldn't talk his way out of this one. This time, the doctor and an evaluation team made the decision to put him in a safe environment so that we could make the necessary changes to his medication to help him.
I kept my head held high as we walked through this process but my body and my brain were a scrambled mess. I had to keep moving through it and keep moving through the day's details. Soon the emotions and fatigue would catch up with me.
A few weeks ago...I dreamed of a white padded room. I think then I knew, if something didn't change soon, that is where I would end up.
To be continued...
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