Wrong, I say, it is wrong

It is absolutely wrong for a single mother to take care of a son. Wrong, I say, wrong-aruni. Disgusting. Let’s say you have a disabled twelve year old boy … and he lives alone with his mother. My word, isn’t that an abhorrent thought? She changes his clothes! She bathes him! Good lord, she sees

Circle Jerk

So there I am, the only male in the room. My daughter was 3 years old … we attended the Early Intervention program and two afternoons a week I took her to this state run place. Not too bad, the kids play, there are therapists around, the moms and me hang out. Then, of course

These shoes are too small

Have you read the link above, the one titled shoes? If not, read it now. There are thoughts we have, “we” the parents of the severely disabled, that we cannot share with “others.” Even “others” who love us. Unless you are in those shoes, you cannot know. Even if you work with the severely disabled

It’s all about me

Why me? I spent a few years asking, “why me?” Why, God, did you do this to me? Why did you give me two severely disabled children? Some kind of sick joke? Is my middle name Job? Why did you decide my plate could hold all of this? Why me? I’ve stopped asking that question.

What’s that you say?… continued

So we go see the specialist in “augmentative communication.” Fancy words. They try to figure out how to get basic communication going. We first saw them about 6 years ago when she was 10. One of the best hospitals in the country, so they say. They did not help. We went with my daughter, her

Neonatal Intensive Care Unit, Day 6

Back to when she was six days old. It appears the nurse was wrong. We would be bringing her home. They have no idea what is wrong, other than her brain did not fully form properly, there is possibly an issue with her ribs (bogus), had no clue what the future would be like. I

Night terrors

Over the years I have been told often that most often this population dies from aspiration … basically the wrong stuff being sucked into the lungs. Typically, in our case, it means a disabled person refluxing or vomiting while in bed and suffocating on it. Pleasant thought, no? I’ve lived 16 years knowing this. Luckily,

What’s that you say?

My daughter is severely disabled. She is non-verbal, non-mobile and has an incredible personality. She cannot communicate a simple yes or no. She cannot signal where she hurts when in pain. She cannot inform you if she is hungry or tired. She is 16 years old. She has NO communication abilities. She does not come close