Sunday, October 28, 2007

Listserve Spies

Okay so last week on the listserve I belong to…Someone posted with a bunch of questions about IEPs and Safe chairs and safe spaces and BIST and all these things that when I read about them I start to feel sick…I haven’t had to deal with any of those things yet but I know it is coming and soon. So I am reading about this poor woman and her apparent feeling of helplessness and confusions and anxiety and fear all together and I am thinking WOW, this listserve is a great place…She is going to get a lot of response and a lot of help and people who know what to do out there are going to support her…and me when I need them…What was the response? The response was from a woman who simply stated…This listerve is not confidential…there are representatives from various school districts who routinely get on this site, copy your e-mail if they contain complaints about the district and share them with the various district boards…Directly following that response was another person saying, yes, its true…It happened to me in my district., one of the board members referenced one of my e-mail during a meeting.
I just don’t even know if I can sufficiently express my shock and disgust. Spies! School District Spies on a pathetic little listserve where people go to self educate themselves about their kids special needs, about services supposed to be proved by the state to help them learn effectively…It would be funny if it weren’t so sick….These have to be the same people who voted for G. Bush not once but twice…I swore never to discuss politics in this blog or religion since it has a tendency to ostracize a portion of the population but it is the most effective metaphor I can think of and I don’t really know if anyone reads this anyway so I’ll use whatever metaphors I want from now on!!! In any case…nothing is sacred anymore I swear…To make this blog easier to swallow…the woman who initially posted with her questions replied that she didn’t give a damn who read her post and that they could feel free to quote her e-mail at any meeting any time…that she is the only advocate her child has and she won’t be bullied by LISTSERVE SPIES! Good for her…


When you are talking to me on the phone this is what is happening to me:
Miles hears the phone ring. Runs with utter delight to the trashcan and dumps it over…If I actually answer the phone he heads up the stairs to the game room where he proceeds to dump all the Uno cards, checkers and dice that he can find over the balcony into the ceiling fan. At this point I am still trying to focus on the question you are asking me or the description you are wanting a comment on….These are serious conversations…Friends needing advice on relationships, jobs or just wanting to vent. Parents with serious health problems or needing help with rides to the hospital or grocery shopping. These are things I need to think about… focus on… and I am running, literally around the house trying to prevent my child from flushing his baby doll down the toilet or running out an accidentally left open front or back or garage door. People know not to call me unless it is serious. They know I will call them for idle chatter when I am on the road or the baby is away with Daddy…. I gauge the seriousness of the phone call…pretzels, marshmallows, red hots or pepperoni? Perhaps a bowl of pickles or a lemon to chew on? I give him a bit of each watch his face alight from hotter than crap to sugarcity…AND I HEAR WHAT YOU ARE SAYING FOR LIKE 5 SECONDS…and it is wonderful….Then the food is scattered and the table overturned and before I even blink he is up the stairs to the bathroom to wash his hands…Which always involves lots of water on the floor and a burned finger or two…Mind you this entire conversation and all activities have been accompanied by either whimpering, whining, wailing or some unbelieving annoying chanting…That is usually DADADADADADADADADADADADADAD and of course he is at work…and when I, Oh, so, silently utter the words “Daddy” and “Work” together it is like his world has ended…the utter despair and, I am not kidding, the anguish, on his face is so heartbreaking that I just have to get off the phone and snuggle him up in my arms and tell him Daddy will be home soon and I am all his for the rest of the day. Please… always…all of my eternal utter remors for the failed phone conversations of late…Remember how much I love e-mail and also please don’t stop calling me it makes me feel human and loved…

Monday, October 22, 2007

Imitation Stage

A new and intriguing string of behavior has recently appeared in Miles. He is starting to imitate ailments that have hit Carrie and I. His first foray into sympathy pain was several weeks ago when Carrie sprained her ankle. After her ankle had been wrapped and the healing was starting to really begin, we had a night away at a hotel while Miles and Zen were being watched by the grandmas. The next day, we noticed that Miles was limping around. It wasn't a slight limp, it was rather profound. We didn't know where to start. Since he can't speak and has a hard time letting us know what has happened, we were at a loss. After his nap, the limp went away and his cover was blown. Yesterday, the same kind of thing happened. I cut my finger pretty badly on a steel lid and had to run off for a band-aid. After coming back, Miles was frantically waving the same finger on his hand. He wouldn't stop until we got a band-aid to seal up his imaginary wound. It's quite intriguing to see your little one imitating your injury to be a part of what you are going through. This is just another unique mix known as Miles as he continues to fascinate me daily with his intrigue.

Wednesday, October 10, 2007

My Fear Exposed Nationally on CNN

I saw one of the saddest headlines on CNN this week. Apparently, some 10-year old kid with Autism was beat up by a group of kids while getting off the bus and another kid video taped the whole thing. When I watched this boy's Aunt, his legal guardian, talking to reporters, she wouldn't even show her face. There was nothing but her shuffling feet and quivering voice over the video roll of the location where this incident happened. I didn't want to watch the segment, but thought I would peek into how badly segments of our society has devolved. This is my biggest fear about my Miles boy. The cruelty of kids, misunderstanding of adults and the general nadir of pockets of our society make me want to keep Miles at home all the time. All kids need to be protected and this poor kid, along with all kids with any mental/physical limitations, need to be protected by us all. And the parents of these kids that committed this horrible act of brutality need to go to an Autism clinic for one full day to absorb the imagery of what their kids cannot comprehend. Then, they could pass it on to their young ones that feel they are mightier than someone else with a mental impairment that is already enough to deal with each and everyday. I'm scared of America sometimes and when I see stories like this I'm afraid of many people and their collective inability to show civility no matter what is deemed normal or abnormal.

Tuesday, October 2, 2007

Coping with Grown Men & Autism

I know I've talked about this before, but I have to delve into the way that I view men dealing with the Autism Spectrum and children in general. It was all tipped off last week when I read the Jenny McCarthy article about her son that has autism. It was a rather insightful article. As it wound to an end, Jenny said towards the end that 'there needs to be a special place in heaven for mother's with autistic kids.' Again, it was with this comment that I feel marginalized by the male race around me. I have consistently made a strong committment not only to therapy, treatment, but to raising my son by spending plenty of quality time with him. I have done this since day one and will continue to do this until the end of my life. But, it's usually viewed as the woman's burden in particular to take care of a child with a disability. Case in point, when I drop Miles off at the ABC Clinic or the times I have spent hours with him during therapy, I never see men. It's always a collection of women that come through the doors to drop off or pick up their kids. And this article about Jenny talked about how the father of her son couldn't hack it and was asked to move out. Furthermore, it went on about how he couldn't get over the fact that she was preoccupied with sex. It's this kind of stuff that is going to consistently view men as father figures in a very weak light. Until there is a more unified waking up of men across all fronts of the parenting horizon, it's going to be viewed as a woman's job to parent. That's rubbish and it chaps my hide that men put so little into the entirety of raising children, especially those with disabilities. Having a child in the autism spectrum should never be something shouldered by one parent .. that's just not cool or right. It's a shared responsibility that requires love to tackle the ills of a mental disorder that takes brain power to heal. More than anything else, I'm delighted that I'm such a huge part of my son's life and see myself as a 'parent' versus being a 'male'. I don't like what the majority of men do these days. The stereotype of a man as a sports addled beer drinker reverted back to Leave it to Beaver days is exactly what happens all too often. At any rate, that's my thought on the matter and Jenny might want to consider that there's a place for everyone that has to heal a child with autism.