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El's Story
Last night I sat through a PTO meeting at my kids’ school. It was the second one I have attended in the 9 years my boys have been going to school. An argument broke out due to a large sum of money that the PTO spent last year on a sign for the school. A woman seated next to me pointed out that I wasn't there so I couldn't comment. I told her that up until this year, I wasn’t able to attend because I have 3 autistic boys who I couldn’t leave. Fortunately for me, my boys are in a place now where I could leave them with their dad or our friends Chris and Joe. They like Chris and Joe. Finding someone who likes them and they like isn’t an easy task. I see them as a godsend after so many years of being isolated from society. She went on to rant, quite loudly, that she works, has a child, goes to school and her husband works so everyone has their thing and I’m no different. I looked at her and said “but you don’t have fucking autism,” I immediately thought of this site.
What I wished I had said to this woman was, “you can leave your child in the PTO provided daycare. You can skip a class and take time off of work. I can’t leave my kids…EVER.”. I would also tell her that I am college graduate who had a great job as an actuary. I had to walk away from a job that was paying more than my husband’s because of my boys. That I can’t take a job now because I have to be available every minute of the day so when, not if, the school calls me, I can be there within minutes to avoid destruction of a room, books, or people. To stay close to my boys, I volunteer at the school as much as possible. So I was reminded last night, of my “warrior within”.
As I mentioned above, things are better now. My boys are now 12, 10 and 8. They are high-functioning autistic. I guess right now I live in the “tween” world of typical and autistic. It comes with its own set of problems. I do venture out into the world with them at times when I’m feeling strong. My middle son who is very sensory messed-up has problems with crowds, smells, sounds, over decorated rooms, waiting for anything, standing or sitting still, and remaining quiet. He also never holds back. Once while waiting for food at a Denny’s, he was losing it. He kept moving and whining. He was getting more and more agitated with each minute that passed. To make matters worse, an older woman sitting behind us turned to glare at him every couple minutes. After the 4th time, my son looked her in the eye and said “what the fuck you looking at you idiot”. He read my mind! What was she looking at! Isn’t it obvious that this child had a problem? What was her excuse? She was just one of a parade of people I’ve encountered in my journey into autism.
Many times when my oldest son would be having a meltdown in a store because the train he was looking at stopped moving, or a picture was moved since the last time we were there, my husband would pick him up and leave. Having an infant with us, it would take me time to get together to follow. This presented to me an opportunity to hear all the comments “they should discipline that child”, “they should stop giving him sugar”, “I would never allow my child to talk or do that in public”. Like I had some control. You can’t control an autistic child like you do a typical one. They are a different breed. These children can go without sleep for days and yet find energy to run full speed through the house destroying things! When my 2nd was 2, he decided he didn’t like the dining room so he broke all the chairs. I was nursing my infant at the time so I was helpless to stop him.
My youngest is perceived as a brat by others and the school. I get the “you must have babied him since he’s the youngest” routine. Are they fucking kidding me?? Baby?? Let me paint the picture. I have a 5 yr old who is autistic and can only repeat words back to me. He also likes to target kids and beat them up for no apparent reason. If I pull him away from the child, he will manage to find him and attack. I had to stay an arm’s distance away from him everywhere we went. Let me tell you, going down a tube slide when you’re 8 months pregnant isn’t a good idea. I know.
My 3yr old sleeps 4 hours a night which of course means I only sleep only 4 hours a night. He’s very angry thanks to medical doctors but that rant is for another time. He gets home from his preschool (autistic school-floortime-no ABA crap) at 2. On the counter I have lined up calming herbs. I go to get him and he kicks me, bites me and head butts me in the face. I had a black eye and a broken lip for 9 months. I carry him in the house, careful not to get my blood on things, and give him the herbs. Sometimes they work, sometimes not. I then have to follow him around to be sure he doesn’t attack my 1 yr old. If I have to go to the bathroom, I lock him in a high chair and go as fast as possible before he figures out how to get out. Either that, or I have to lock him in the bathroom with me. I spend my time from 2-8, when my husband hopefully gets home, chasing and tackling my 3 yr old to prevent him from getting to his little brother. Meanwhile the baby is crying because he’s hungry but I can’t take the time to feed him. My youngest wasn’t babied. He was neglected. It broke my heart to hear him cry knowing I couldn’t go to him. Many times I would collapse on the floor and cry.
Help? What help? I have family less than a mile away, but I constantly hear how they wouldn’t know what to do and my kids would be much happier with their mom. In between this I would hear that I didn’t discipline them and that’s why they’re like this. My sister has accused me of not talking to them which is why they don’t talk. Basically, that as a mom, I was a failure because my kids had behaved this way. I lost all my friends. It wasn’t their entire fault. I couldn’t bring my circus on the road and no one, including my sister, wanted their kids “picking up bad behaviors”. When the diagnosis was finally made (my oldest was 4), the response I got was “It didn’t come from our side”. Just a note, my family is an educated family. The majority are in the medical field. Any wonder why I packed up and moved halfway across the country??
My only friends became my internet friends who knew how to rejoice because their 4 yr old said “juice”; jumped for joy because their son finally looked at you and said “mom”; and cried and laughed with you over the things they did. Typical people couldn’t relate.
My boys are now older and thanks to homeopathy, herbs, supplements, energy healing and some other rather bizarre things we did, they are doing ok. I still can’t go to many places and I am constantly on call, but compared to where I’ve been and many of my friends still are, I’m in a good place. I still lay awake at night wondering what’s to become of them when I’m gone. Autism is a physical, emotional and spiritually draining experience. I love my boys with all my heart and am thankful for the opportunities they opened up to me. I would never be the strong person I am today if I wasn’t constantly battling doctors, schools and people in general for my kids. The people I met on this journey are truly tremendous spirits and I wouldn’t have wanted to miss it for the world. There is a comical side to autism which is what I wanted to write about. However, after last night’s comment, I’m a bit angry. Maybe next time, I’ll be a bit more comical.
webmaster note: Some of these should really be a continuing series. I hope this author will consider that. Thanks for your input!
