Parents of children with special needs get many mixed messages from people and institutions that are there to help them.

For instance just the other day a co-worker and I had a meeting in the city at the Regional Center's main office, a place I had never been before. After a harrowing ride on rapid transit (okay it was only me that was harrowed) we managed to get off at the right stop and exit the underground dungeon (station) coming up to the light of day on Market Street. Surrounded by the sights and smells of the city's semingly seedy side we took the wrong route and walked deeper into the depths of poverty. After an aburpt about turn we found our way to the street where the office building was located.

I noted as we rounded the bend that the location was a dead end street. Mmmm I mumbled out loud, what kind of message is that sending to parents? (your life is a dead end?)

Every time I visit the ECE Center on Tower Road and use the handicapped bathroom, I think of how that bathroom had once served as our Parent Group Meeting Room some 20 years ago.

We had asked for a space to meet in and the program director at that time gave us the unused bathroom. They fit a couch in there and made a box to cover the toilet, which we then decorated with a table cloth and ribbon. I wonder what kind of message was that program director trying to send us? (I s--- on you parents) Wow, I never even thought of it at that time, but it is a bit ironic.

Perhaps it was just a way to accomodate our needs, but when you really think about it, it was the wrong way to do it.

Yesterday on the news they said a new study had been conducted, calling for adults to get at least 8 to 9 hours of sleep per night. Anything less and it is considered sleep depravation. The long term impact can affect your health and your ability to function.

Those of us who have medically fragile children, or just kids who won't sleep know this state well. It is terminal with little escape, Audra's entire 12 years were a study in sleep deprivation.

A good night with Audra was being up with her 3 times, a bad night were what I referred to as "all nighters" with little sleep at all. Most nights it tended to be somewhere between 3 to 6 times a night.

After Audra passed away I had to re-train myself to sleep. I was so use to the abnormal sleep pattern she had shared with me that it was quite difficult to change it.

I remember a few months after Audra had passed. My husband came in to wake me up, "Are you going to sleep all day?" he said. "Go Away, I exclaimed through closed eyelids, Audra gave me this!

Sleep, some people might think it is over-rated, but those of us who are sleep walking through life know better!