-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-.  And luckily, the crown and duty counsel agreed to let his brother talk to him.  It took his big brother to graphically tell him what jail might be like and have him agree to the 30 days.  And the crown actually wanted 48 hours notice if the assessment was to finish earlier so he woul not be sent to jail (at least that is my understanding, but like I said before, don’t take anything for granted!!).

I miss him so much.  I can’t visit him.  I can talk to him on the phone, but from all of the daily calls we have, only 3 or 4 of those, he has not hung up on me.  His dad and brother visit.  On their last visit, he asked what he did and why he was there.  They want to have him fit, but he knows not what he did and family will not tell him.  And he thinks that he is coming home on Tuesday after his court appearance.

Please tell me I have done the right thing.  I am scared.  I am beside myself.  I am lost!!  I want my child back, the one I remember up until a few years ago, without the sudden rages and violent outburts, the boy that would always be full of hugs and kisses, stroke my head and play with my hair.

I miss you sweetie!

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 “I want a girlfriend“.  Alone with him, it took all I had to grab the phone in our struggle.  I remember rolling up as if I was being attacked by a bear.  I had to keep my face and neck protected.  Between the choking, jumping on me and stabbing with a fork, I somehow managed to reassemble the phone and dial 911.  But I don’t remember being able to press the talk button.  Somehow, I had managed to get him off of me and run to the safety of my bedroom.  911 operators called back and stayed on the line until police arrived.

Michael was again taken to the nearest hospital.  The only difference between this visit and the last, is that I was also checked out.  The fork had not pierced the skin, but there was swelling on my head, neck and marks all over my back, neck and face.   Again, he was formed.  Again, the pychiatrist was not in the hospital and would not keep him.  His condition is not that of a mental disorder, but due to the calcifications on the frontal lobe of his brain, that have affected his problem solving, spontaneity, memory, language, initiation, judgement, impulse control, and social and sexual behavior.   It was their suggestion that he be seen by a forensic psychiatrist.  They could keep him overnight, but the next morning he would have to come home.

I was really scared this time.  What if it had been a knife?  I have always known that someday it would come to this, but what we as a family did next, scares me even more.  The hospital called the police to return and tak Michael.  That was the only other alternative.  The doctor in emerg was apprehensive in letting him go unless he would be by himself.  To my knowledge, he would be arrested and taken in front of a JP the next morning and then sent for a court-ordered assessment.  Not quite right!  We has arrested and charged with assault with a weapon.

Calls to the mental health crisis center, the behavior specialist, his support worker and the mental health services got us on our way.  First stop was to mental health court services.  His support worker cleared her schedule for the day and arrived at court shortly after us.  She is a lifesaver.  Without her, we probably would never have managed to keep things together.  She knew all the right questions to ask, who to see, what to do and still be there to comfort us.

And this time, both the crown and duty counsel agreed that he be assessed.  But the assessment is to see if he is mentally fit to stand trial.  This is where my fears leap in.  What if they deem him fit? I cant’t see his happening, but I am not a medical professional.  Deemed unfit, then maybe he will finally get the needed medical attention that we have struggled for over the past 5 years.  Deemed fit, what will become of him?

So I ask, does the end justify the means?

“Nature has placed mankind under the governance of two sovereign masters, pain and pleasure. It is for them alone to point out what we ought to do, as well as to determine what we shall do. On the one hand the standard of right and wrong, on the other the chain of causes and effects, are fastened to their throne. They govern us in all we do, in all we say, in all we think…”
— Jeremy Bentham , The Principles of Morals and Legislation (1789) Ch I, p 1

Help find a cure for Tuberous Sclerosis. All that’s needed to join Facebook is a valid email address. 

You’ll find links to various support groups, agencies, hospital and clinics, genetics… This is a global group and anyone is invited to join.

We were afraid to take him home.  Two days in a row, violent outbursts.  What could we expect next?  The staff at the hospital seemed to be genuinely concerned, but the doctor at home, who never spoke to Michael or the family, what did he care?  One patient less to look after?

Unfortunately, Tuberous Sclerosis is not a mental disease, so should it or shouldn’t it be treated with the help of a psychiatrist?  Are the behavior problems and violent outbursts not part of a mental health issue?

I thought that when a person is formed and is a danger to themselves and to others and cannot be resposible for themselves or their actions would never be unformed.  And we had the bruises and cuts and goose eggs to prove his violence… and all the attending staff saw…

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.

Around noon that day, my husband called and said that Michael still wasn’t up, so he went to check on him and found him missing.  About the same time, I got a call from one of the local police officers saying that Michaeal had been into the station for a chat and left.  “Left?  You let him go?”  Officers were on the lookout for him.  Mid-afternoon, the phone call came:  “We found your son, he’s being checked by ambulance attendants.”  That was a 40 km walk that day in scorching heat.  He was dehydrated, burnt to a crisp and slightly disorientated.  When I picked him up, he told me that he had taken his wagon to carry his belongings  – all his socks and underwear – school books - playstation – cds and dvds and school bag and probably more that I will discover in time.  In the next town, he upgraded the wagon to a shopping buggy which was later dumped on a sideroad.  Too heavy and kept getting stuck in the gravel shoulder.  But we had the smarts to take the school bag with the playstation.  Dumped that too, or tossed it, who knows.

So we spent time looking for it.  Guess when I was climbing the fence my necklace with the solid red heart came undone and the heart went missing and my strength disappearred.  Everytime I needed that extra bit of strength, I would clutch the heart and it was like my mom and my sister were there supporting me.  And how I’ve needed it every since that day.

OCD (obsessive compulsive disorder) and impulsivity go hand in hand with the TSC complex.  This is only one instance in many of Michael’s great escapes.  They usually occur when he has it in his mind that he wants to see someone or go somewhere.  He will obsess all week about someone and by weeks end, he’s off and running…

In the study, which was carried out by researchers from UCLA, mice were bred to have TSC; they specifically had deficits in learning and memory. By giving the mice rapamycin, a drug that has been approved by the FDA to fight tissue rejection following organ transplants, their learning and memory deficits were reversed. From a press release containing interviews with the study’s researchers:

Rapamycin is well-known for targeting an enzyme involved in making proteins needed for memory. The UCLA team chose it because the same enzyme is also regulated by TSC proteins.

“This is the first study to demonstrate that the drug rapamycin can repair learning deficits related to a genetic mutation that causes autism in humans. The same mutation in animals produces learning disorders, which we were able to eliminate in adult mice,” explained principal investigator Dr. Alcino Silva, professor of neurobiology and psychiatry at the David Geffen School of Medicine at UCLA. “Our work and other recent studies suggest that some forms of mental retardation can be reversed, even in the adult brain.”

“These findings challenge the theory that abnormal brain development is to blame for mental impairment in tuberous sclerosis,” added first author Dan Ehninger, postgraduate researcher in neurobiology. “Our research shows that the disease’s learning problems are caused by reversible changes in brain function — not by permanent damage to the developing brain.”

………

“Memory is as much about discarding trivial details as it is about storing useful information,” said Silva, a member of the UCLA Department of Psychology and UCLA Brain Research Institute. “Our findings suggest that mice with the mutation cannot distinguish between important and unimportant data. We suspect that their brains are filled with meaningless noise that interferes with learning.”

“After only three days of treatment, the TSC mice learned as quickly as the healthy mice,” said Ehninger. “The rapamycin corrected the biochemistry, reversed the learning deficits and restored normal hippocampal function, allowing the mice’s brains to store memories properly.”

Regan commented about the study on an earlier post; the researchers’ association of intelligence with learning and memory is particularly interesting to me, and also Dr. Silva’s definition of memory as being “‘as much about discarding trivial details as it is about storing useful information.’” My son Charlie has a great and powerful memory: He never seems to forget a therapist or teacher, a place we’ve been and the route to it, a toy or food or activity that he’s liked a lot. He tends to get stuck—fixate—on those first, earlier things he’s learned and to have trouble learning new things (getting used to new teachers and therapists, going to new places along new routes, playing with new toys and trying new foods and activities). Often it seems that the first of many things is what “something is” for Charlie and teaching him otherwise evokes cognitive dissonance,” as if he’s pushing against something in his brain to accommodate for something new.

I’ve noted Charlie’s longstanding struggles to learn the alphabet and language (both understanding and speaking it). Regarding the alphabet: We started to teach it to him when he was about 3 1/2; he’d had no trouble learning numbers. It has taken years for Charlie to recognize the letters and sometimes he seems to be focusing on certain details of the letters—certain shapes and the fact that to many letters rhyme with “ee”—and not to know what aspects he should focus on.

The further results of this study will be of interest to us. But if there were a medicine to help “reverse” memory and learning deficits, I think that Charlie’s thinking and being would be in many ways the same. He takes in so much of the world around him and I truly think his emotional intelligence is the same as other children his age: As I wrote, my husband Jim has injured his back very seriously and, consequently, has not be able to be at all as active as he is used to and as he loves to be. Jim can barely walk right now (this is my husband who easily runs a mile and a half to train station and through Manhattan streets instead of taking the subway, with a bag stuffed with books and papers). I’ve been explaining to Charlie that his dad injured his back and that Charlie has to do more for himself—-and Charlie has been getting out of bed on his own when I ask (instead of getting tugged and semi-carried; he’s always had trouble getting up in the mornings); he’s pulled on his clothes and grabbed his backpack and run down the stairs for the bus with minimal asking. What is this thing called intelligence, I sometimes wonder?