Tuesday, August 14, 2007

Mattel Toy Recall

How many recalls must there be before Mattel says they have to raise the prices of their toys because they are going to have ALL their toys manufactured in the US where these laws are more seriously enforced.

Clearly China does not care about who dies as a result of their lack of quality control.

We insist on low prices. This is what we get.

It is next to impossible to refuse to buy anything from China. At Walmart virtually everything comes from China (so they say.)

We must be willing to pay more and have less things in our life.

I know this presents the greatest hardship to people on disabilities who live on a measley fixed income as it is. So we also have to insist on spending more of our taxes on programs such as SSI and SSDI.

We in the US have the right to believe that the goods we buy in our stores are safe. Where is the quality control?

I cannot boycott all goods made in China, but I sure am going to try to boycott them to the best of my ability.

Saturday, August 11, 2007

More sunshine

Today my friend said her first words since going into her coma 3 weeks ago. She said the name of her fiance. She doesn't remember she has a baby daughter. She doesn't remember the days of the week, and she can't feel her legs. And she has no idea what happened to her to get her in the hospital. But she is responsive. She feels pain. And she is getting better, albeit slowly.

Depression is a scary thing and should not be ignored. If a person says there life is too hard and they are doing things like not eating and cutting themselves and getting so drunk they don't remember what they did - those are warning signs to pay attention to. Don't be like my friend who decided one day that driving her car into a tree was easier than the life she was living. It isn't now and I doubt it ever will be. She has a very long road to whatever recovery she accomplishes.

Tuesday, August 07, 2007

Today was good.....

Silly day. Did mostly nothing. But did it without a schedule. Without consideration for anyone else. Did not feel once I should be a good example. Felt no guilt for talking on the phone to my friend for several hours. And now I am going to read - perhaps read all night - and tomorrow sleep all morning. A life alone. It feels good.... for a few days.

Monday, August 06, 2007

Lonely until

Yesterday my son went to camp. This morning my lover left for home. Today I am lonely. SO I will blog.

I won't miss Teddy tomorrow or the day after - as I will have settled into my solitary life. But today the house seems so quiet. No TV set on. No questions about what we are going to have for dinner or do tomorrow. No unnecessary lights on. No announcements of where he is going or that he is back. No one to feed the rabbits. No one to remind me to eat. Just me.

I don't get the chance to be lonely often. I sometimes think of Teddy and me being attached at the hip. I support him in the work he does. He supports me in the work I do. We enjoy doing the same things. I have to know where he is at all times. I never get to stop being responsible - no matter how independent he becomes.

I do get breaks from him. 4-5 hours in the summer when he goes to the pool or during the school year when he goes ot school. But the only time we are away from each other for more than a few hours is when he goes to camp for a week in August and December.

Rich is here when he leaves - so the first day Teddy is gone is rather blissful. A day where Rich and I can be alone with each other. We make love for hours on end without any concerns. We go to a wonderful romantic restaurant and I don't have to feel a bit of guilt for leaving Teddy home alone with his pizza. I feel more free than almost any other day of the year.

But than as is typical, Rich leaves and the silence without Teddy gets so loud. Today I miss Teddy. Today I feel a loss. Today I worry if he is having a good time and if he is fitting in. Today all my fears about a young man with Down syndrome going to a camp for teenagers without disabilities being OK are on alert. Today I worry. Today I miss the men I love. Today I blog.

Tomorrow I read uninterrupted. Tomorrow I play music all day. Tomorrow I cook with ingredients Teddy doesn't like. Tomorrow is mine and mine alone. Tomorrow will be wonderful!

To my friend Peaches!

H A P P Y ---- B I R T H D A Y !

A bit of sunshine...

A person I met thru my message board has had a very very hard time of things lately. His girlfriend inspired my post about the whether people with psychiatric labels like Borderline Personality disorder should parent. Since that post things with her got much worse.

This young woman drove her car into a tree. She has been in a coma now for over 2 weeks. She broke many bones - some so badly they were removed. There is no way of knowing if she will recover and if she does what she will be like.

But this post is not about her, it is about her 7 month old daughter and her daughter's Dad. I have become very close to him. Worrying with him. Fearing the worst, wondering what the best could be. I have tried to help him help his daughter - who of course has no way of understanding why her life has been turned upside down. I have tried to support him wherever it is he needs to be as it fluctuates from moment to moment. He says he thinks of me like a mother - and I think of him like a son.

So when social services picked up their baby last week because he had no proof he was the father I cried. It was as if they snatched my son out of my arms. I remember all too well when my son was my foster child the tenuous hold I felt I had on him. I lived in fear that one day the foster care agency would say they had decided he needed a 2 parent home. I wanted what was best for him - but I felt in my heart I was what was best.

Today I also cried. Today she was returned to her father. They apologized and said they made a mistake. The midwife contacted them and evidently said the magic words. I feel as if my granddaughter is back home where she belongs. Sometimes there is a bit of sunshine where before there seemed to be none.

To Silly Man

I know you read this blog. So you can come here and read this over and over because I never tell you often enough how much I love you. I never say often enough how much I appreciate how much you care about my son and his future. I never say often enough how patient you are with him and what a tremendously good influence you are on his life. I can't know how you put up with me when I have my fits of despair, but you do. You hang in there with me and are still there when I emerge with regained composure. You love my body which I do not love myself. You make me feel like no one else in the world can. I cannot imagine my life without you. Everyday is better because of you. Weekends with you here are like my own little piece of utopia. My life changed the day you reentered it and waited patiently for me to notice you there. I can never ever communicate in words how incredibly significant it is to me that you love me.

Friday, August 03, 2007

Blogs vs Message Boards

In love. Is being in love when you feel pissed, but instead of being pissed you blog? Has blogging become my own personal therapy tool? Could we become a kinder, gentler world if we blogged instead of wrote messages on message boards?

I read numerous message boards. Several seem to thrive on adversarial communication between its members. It almost seems as if without controversy they have no reason to exist. I was going to say message boards are topic driven but blogs are not- but that isn't true. Perhaps the difference is that message boards are intended to be democracies where there is never any intention of a blog being one. The reason people often post to a message board is not to agree with a poster, but to disagree.

A blog is a "one man show". One person writes it and the community it creates may not be required to agree, but it seems to me that bloggers are much more about find the commonilities between its community than in finding it differences. There seems to be an attempt to educate people to come around to your way of thinking rather than bash them over the head with your perspective.

But maybe I've just had a run of bad luck with message boards and find blogs than are more compatible to my way of interacting with the world.

Disability Carnivals

If you like reading blogs and need more inspiration than what a blog roll provides - try reading a disability carnival. A carnival is similar to what you find in the forward of a book or an introduction to a journal - it gives you a tease - so you want to read more. A blog carnival gives you a little snippet of a blog related to a theme. The theme is decided upon by the blogger and they cull the net looking for blogs to cite.

Zephyr aka Arthritic Young Thing assembled a bunch related to the topic of sexuality and disability. She cited the disabled soapbox - even though the topic she made note of didn't relate to sex. (I haven't blogged much about sex -that is going to have to change soon.)

SO read you first carnival! Here's the link!

Thursday, August 02, 2007

Which disability is worse?

That is one of those nonsensical questions that seems to get asked a lot. Well last night I didn't decide which was worse, but I sure got a dose of what my (unacquired) tolerance is for certain behaviors. My son had a birthday party last night and had 5 friends over. 2 had Down syndrome like he does. 3 had other unknown to me disabilities. But the disability itself really doesn't matter, it is some of that behaviors that drove me nuts.

Eating with your mouth full and talking. I never really understood why this was such a problem. Now I know. Or maybe my level of tolerance has lessened. I watched the two young men sitting across me at the table as the food bits spewed out of their mouth in various directions. Not a lot- just a few tiny bits. But it drove me crazy. I wanted to tell them to close their mouth when they chewed and stop talking. I also felt like I wanted to run over to the other side of the table with the vaccuum.

I sat next to a young man on the couch who decided to go through a pile of items neatly stacked on the lower level of the coffee table. He also opened up cabinets in the kitchen and looked at them. And open up the refrigerator. He also went to the bathroom and I found myself wondering if he opened up the cabinets. This all made me feel uneasy. I was sure it was just curiosity and harmless, but I felt protective of the privacy I am accustomed to.

Another young man had one conversation he wanted to engage in all night. It would get interrupted and he would engage in other conversations, but as soon as there was a lag it was back to that same conversation topic. I wanted to say - enough already - but of course I didn't.

Another young man paced the floor back and forth, back and forth. I commented that he sure did like to walk. He said I like to walk OK, am I hurting anyone? I said no, of course not. But it exhausted me to watch him pace back and forth. I wondered did I need to do something to stop his desire to pace?

And another young man reminded me of my mom. He talks very quietly. My mom is sure she doesn't talk any different than before, but I am sure that her hearing aids have her thinking she is talking louder than she is. This young man didn't wear hearing aids, but I knew it was futile to ask him to speak up and I had to guess what he said from the one syllable I could hear in most words. I know I really have to give in and get hearing aids.

And lastly the young woman who perceived herself to be my son's date. She is that hypersexual person with a disability who misses the cues to slow down, back off, and take it easy. It is sort of amazing to watch my son be the object of affection of another - and I wanted to say - go downstairs and do it in private. But she really is just a tease. And my son really was in the party with everyone mood.

I found myself wondering - am I getting old that these really insignificant behaviors drove me to distraction? Am I so accustomed to my son's quirky behaviors that I've lost the ability to accept other quirky behaviors as well? I wonder what other parents say about Teddy that they wouldn't say to my face?

Maybe the things that drive me crazy about Teddy drive them crazy too? Or maybe they see those as endearing and behaviors I don't even think twice about are the ones that they find annoying?

Teddy is constantly asking about what happens next. Sometimes I want to scream (and do), forget about what happens next, enjoy now. But I know this is a monster I created. Early on I would tell Teddy what was going to happen for the day. Warn him about transitions. 5 minute reminders before we change gears. 1 minute reminders. Patience when he is still not ready. Most of the time I give him a running itinerary of the day, the next few days, the week without even thinking about it. But some days it seems like such a chore to answer - what are we going to do tomorrow?

The other thing he does that really makes me crazy is that he asks people questions he knows the answers to. Or questions he asked 10 minutes ago. I find myself saying, if you ask me a question, listen to the answer so you don't have to ask me again. Is this such a big deal? Does it really matter it takes 2 seconds to repeat myself? But sometimes I prefer to rant for 3 minutes about my having to repeat myself.

I 'm not sure this is a disability thing after all. We all have quirks. But then I am sure one of the quirks people think I have is that I interrupt and sometimes answer questions in what seems to be nonsensical ways- and it IS a function of my disability. I can't hear very well. Actually I am deaf. Not deaf in the way that people think where you can't hear sound at all - but in the way that I just can't make sense of what I hear too well. SO the other quirk is that I have to ask people to repeat a lot. I am sure I drive many crazy. And I wonder how many people say to themselves - when is she going to get those damn hearing aids!