Light it up blue

I haven't written a post in months. I haven't had the heart to do it. In January, Jordan's psychiatrist said (after a huge explosion of rage) that he needed to be hospitalized in a Psychiatric hospital that has a special ward for children and adults with developmental disabilities. She said that it would be best for him, because he needed a major med change and they could do it there safely since he could be monitored closely, and she didn't know how to help him anymore.  His new med had already stopped working. Hmm, she's a psychiatrist that specializes in treating adults with autism...anyway.  He had never been away from home before, without us. We spent 7 hours sitting in our local hospital's emergency room/psych area, waiting for his involuntary commitment form to be approved. He had a bed waiting for him in the psych hospital at 3pm. The local hospital basically let us sit in an empty 4x4 room, with nothing to drink or eat for over 7 hours. The doctor hardly checked on Jordan. The second shift nurse didn't even check in on us. She ignored Jordan for almost 4 hours, until my husband started pitching a fit on the doctors. You see, he and Brett were in the waiting room this whole time. Our hospital was to transport Jordan to Pittsburgh (where the psych hospital is) and I would need a ride home, and we live 2 hours away.  We didn't get to Pittsburgh until 1:30 am. We spent 6 hours in that waiting room, despite his bed waiting for him upstairs. He didn't check into his room until almost 7 am. We had all been awake for almost 24 hours, our nerves were fried, and we had to leave our child with strangers. It was the hardest thing I've ever had to do. And I will NEVER do it again. He wasn't even seen by a doctor for almost 3 days, because he checked in on a weekend. No changes were made until he had been there for 5 days. And they only added a medication for anxiety. The care he received in this hospital was deplorable. He wasn't showered. He didn't change his clothes daily. He wasn't even wearing his own clothes, underwear included.  My husband questioned them every single day about this, and we were lied to, every single time. He didn't wear any socks, and walked the halls barefoot. Two months later, I'm still treating his feet for the fungus he picked up. He didn't brush his teeth. I know this because after he came home, I wanted to give them a good cleaning. Blood literally poured out of his mouth. I gave him a thorough scrubbing when he came home. He smelled like stale urine, and his rear end had dried feces on it. He looked and smelled terrible. He was there for 18 very long days. He was quickly discharged when our insurance stopped paying. He wasn't helped to the degree we were told he would be.  And I will never forgive myself for putting him there.




 Yes, the medication has slightly helped his anxiety.  But he is still miserable most of the time. He still beats himself with a force that is unimaginable. He beats his head off the floor, punches walls, and himself.  His body shakes and writhes with tics constantly. I can't imagine the pain his body is in every day from this. And I'm still trying to find someone to help him. He has an appointment with another psychiatrist this month. I gave the new doctor his basic story, and he was definitely intrigued, but offered immediately to try and help him. I know he won't be cured. All I wish for him is peace. With his life, with his body.




Today is World Autism Day, as well as the day to Light it up Blue for Autism Awareness. Our house has blue lights shining outside. Brett wore an entirely blue outfit to school today. I am glad that there is an attempt to make the world aware. At our house, we are all too aware. We live it 24-7-365. And despite trying to make people aware, you can't teach compassion. People are still going to be assholes. We are still going to be stared at in the grocery stores, at parks, at the mall, and everywhere else we may go. People are still going to be extremely insensitive and say stupid shit to you. And people are going to ignore you, both family and friends. My kids don't look any different from yours. But they are different in so many ways. Many of the events this month discuss statistics, symptoms, and treatments. The thing is, that isn't what life with Autism is about. There is no glamour. At 21, people with Autism age out of our system.  If you want to know what Autism is all about, come spend a weekend at my house. I'll give you a crash course. It can be ugly. It can be awful. It is painful and sad and depressing. We certainly didn't choose this life. For whatever reason, this was the life that was given to us. We deal with it the best we can. Some days, we do better than others. We aren't perfect. And if you don't want to be more aware of this disability that affects a ridiculous number of people, so be it. But be kind. The looks and comments hurt. Still, after all these years. And remember- you aren't perfect either. We just have the courtesy to keep that to ourselves, rather than pointing it out to you.