37 days have passed and 2 left until it is decided if Michael is fit to stand trial. January 19th brought an end to the initial 5 day fitness assessment.  The Forensic Unit wanted him back for a further 30 day assessment.  But as I soon found out, he is 18 and he has rights.  All this time, I thought that as a parent, I (we) would be the decission makers.

-DO NOT TAKE ANYTHING FOR GRANTED!-

He had to agree to the 30 assessment!  But he thought he was coming home.  If he didn’t agree -go directly to jail-.   Read the rest of this entry »

“The end may justify the means as long as there is something that justifies the end.” – Leon Trotsky

You will never know how it feels, or how I feel, until you have walked in my shoes!  Loving our children is unconditional, but we don’t have to like what they are doing.  The unfortunate part is that Michael does not always know what he’s doing either.

What started as a mild outburst escalated into a violent rage, once again due to Read the rest of this entry »

Tuesday was a school day, unlike any other.  I had made the teacher and E.A.s aware of the night before.  It was an uneventful day at school.  The first hour home after school was also uneventful, until something went wrong with the computer.  The outburst came in a matter of seconds.  Things went flying, the TV was caught just in time, the bookcase was toppled onto the dog and then the violence was directed at his brother.  Read the rest of this entry »

Don’t know what to do anymore. It’s like living with Jekyl and Hyde. For 18 years, I have tried to cope as best I could, but looks like another teary night. Unfortunately, Michael has just about every behavior problem that comes with TS. I can handle the taking off, it’s just the worry of where he is and what might happen, but I can’t handle the abusive behavior. Although we all are affected by his outbursts, it is I who receives the worst, the violent ones. Tonight, I thought I was going to die. The occassional hit in the back is one thing, but tonight, he choked me. Claw marks on my back, bruised knuckles from where I flew into the mantle, marks and bruises on my back and a goose egg on my head. I couldn’t get to a phone.

Don’t want to call the police. They’ll arrest him, I’m sure. And jail is not the place for him. Moderate to severe retardation does not go well in jail, I’m sure. And I know, it will seem like a lietime before he ever sees a group home.

Cleaning the cupboards the other day and I found the empty jewellery box with a card inside from my sister.  The note reads “Because you’re so strong”.  And that is pretty well how I felt until that August afternoon when I was searching farmers fields and river bank for Michael’s backpack that he had tossed.  Read the rest of this entry »

I have started this site to help educate people about tuberous sclerosis and it’s effects on the child and family. 

We first discovered that Michael had this disease when he was almost 2 months old.  We had seen him zero in on his hand a few times, but never really thought too much about it, until one evening when I was breast feeding him, his body just stiffened up.  This was 18 years ago, but I remember it like it was just yesterday.  Read the rest of this entry »