Sunday, October 2, 2011

Derek's Daily Updates for September

CONTACT DEREK         904-HELP AYN 904-435-7296

Sept 26....................Day 103

The long awaited hearing date, my mom picked up Amie early and came over to my house, I kept Lyric home from school, and we sat together awaiting the fate which lay ahead. Was not an incredibly upsetting day for me as I had prepared myself for this moment and was made aware of this outcome on Day 5 by my lawyer... No shock... No tears... No disbelief. Just a rush of sympathy for Ayn and how much longer she has to sit drugged in a basement. I hope they are being good to her. I hope they see how sweet she can be, and realize just how smart and understanding a child they are now caring for. I have spent the last 9 years of my life protecting her from all the dangers that lurk yet always trying to let her test her limits and to learn that she can overcome these obstacles placed before her. To have that responsibility ripped from me under the guise of helping either her or myself is a monstrous paradox. Why not just expel her? I'd even happily endure exile than subject my child and family to this sort of "help". Ignorance and power are not to be mixed, and here we have built a system which though may be marginally successful at protecting the innocent child from an abusive family; conversely abuses any innocent family caught within its "protection".

Sept 23...............Day 100!

Been spending these days leading up to the conclusion of the presentation hearing (touch wood) researching a variety of elements pertaining to the use of drugs vs ABA therapy and the various programs which could be set up to address this rather than drugging Ayn in school.

Boggles my mind that I am even in this fight, never would have imagined I'd be faced with battling my own government over whether or not they can coercively medicate my daughter. Some decisions should simply be left with the family and if they did not like it perhaps they could take the time to educate themselves on my daughter and approach me rationally. The reality is they do claim the right to be able to do this to us at their will, and as I am finding out there is no way to escape the maw without facing it head on and going through it.

Frankly this is not their decision, and if they wanted to emulate the successes I was having in the home in the school environment then why would we drug her senses. It is not their brain to drug... and they can mind their own damn business. Since when is it that they believe they received the right to pump chemicals into a child without the permission of parents....?

Because one ministry (education) cannot handle her, another (MCFD) can remove and yet another (health) medicate, all while waiting for yet a fourth ministry (justice) even authorize the removal??? Where does the family sit?... We wait and watch... facing apologies for heavy caseloads and a lack of resources. One parent's nightmare.

Sept 20................Day 97

Ok so have written this a few times, Lou keeps coming and closing my tab as soon as I get up to do anything, so cannot move til this is done this time. The day began with Lyric in the bathroom with diarhea and not toilet paper... fun fun. After averting the disaster in progress came breakfast then got Wyatt to continue his work on energy technologies.
Spent much of the day pondering the upcoming interviews. The MCFD social worker arrived 30 min early and we began the meeting with an offer and summation of services the MCFD was willing to provide for me to help my kids. After which we moved on to the interviews; Wyatt was to go first followed by Kim then myself. I was told each interview would take apx 30 min, watching the clock as Wyatt was down there seemed to tick by, took over one hour. The questions he was asked centered on his role within the family, and his daily routine; the standard MCFD questions about punishments and fear were also touched upon.
Kim's interview as well largely seemed to center on his role within the family. When my turn arrived I was informed the questions for me were largely pointless as we had covered my answers in previous encounters. Instead we engaged in what appeared to be a rapport building exercise, we both spoke of our pasts and tried to get a feel for who the other was as a person. Was quite interesting.
I know many thought Wyatt being interviewed alone was unadvisable, suspicion also abounded over the timing of these interviews. But it was in fact me who kept pointing out to MCFD that these interviews had never been done , and that any investigation into the validity of their decision would presumably include a view into the household, why it is that it took until day 97 for them to interview Kim and Wyatt is beyond me.
Now I am admittedly biased but I believe the deeper the understanding of my situation the clearer the injustice of this should become. Time will tell once we see their "interpretation" of our answers.
Sept 20.....................Day 97

I just received an inquisitive email seeking more info on Ayn, as many answers to questions are now buried under hundreds of posts, this was my response:

Ayn's behaviour at school was violent and aggressive, but it was the school that formented that behaviour as her "saftety plan" they had in place required them to allow her to go calm down if she ever became so. Ayn learned that in order to be in control of her own time at school she had to get aggressive or violent, that if she asked or even got a little upset she was simply redirected back to her task at hand. However if she exhibited extreme aggressive behaviour than she was allowed to go sit in a rocking chair and listen to music or go to her "calm down room".

In the home I experienced all of those behaviours as well, but with time and understanding they dissipated three years ago, as Ayn learned that violence would not get her what she wanted in the home... here she had to use her words.

I did have many measures in place to protect Ayn and her brother Lyric who also has autism. I lock the exterior doors of the house with key locks from the inside, this is because though i do not experience the violence the school does she is still naive as is her brother and they are liable to walk out the front door, plus it makes it much easier to know where they are. I lock up the food in a pantry, as well as the toiletries as these will be wasted inplay (bubbles and the like), the bulk of the remaining extreme measures I undergo at home involve repairs, as the children are very hard on thigns and continue to misuse items... vacuums, toilets, VCR tapes, the sink, etc are often all toys for them. Her nudity is an ongoing problem though she has gotten better with that too.

She is enrolled in a public school but is isolated from the populous of the school, and is assigned 2 fulltime TA's. Academically the school has struggled with Ayn, failing to consistently get her under "instructional control", they have never taught her past grade 1, at home however Ayn learns like a sponge and i have taught her enough to catch up and surpass her peers in many ways. She began at this new school at the beginning of last school year (sept 2010) and they began to assess her level... she demonstrated the ability to do her own grade level (4), so they gave her grade 5, she could do that too so they moved her onto grade 6 work (thinking perhaps the outbursts were due to boredom).

Ayn is highly intelligent yet severely delayed in her ability to converse, her ability to understand is great and her ability to express her self is good as well, however there is a bridge to gap with respect to her ability to have two way conversations. And she is still very much interested in preschool type shows or movies, she is a very innocent and naive little girl who really does not yet understand that this is not Her planet to do with as she wants. But she is learning and growing... drugging her is not only unnecessary but reprehensible as she is bright and just needs to be shown how to properly get what she wants.

In school however the expectations levied against her in terms of how her time is spent was unacceptable to her. She needs to be taught by providing her choices and allowing her to direct her learning... with my role as parent to be to control the available choices... in that manner Ayn has excelled.

If you have any further questions let me know please, well informed and thoughtful advice can only serve to benefit me. And the better you understand this situation I believe the greater you will see the injustice of this and of what continues to be done to her. She is at present being give 2 neuroleptic atypical antipsychotics, one consistently and the other reserved for when she gets upset... to "calm" her. As her parent this is a nightmare... I love my daughter... I love her free spirit... and I love her will power... I see no reason for the government to coercively medicate her into submission."

Sept 19...........Day 96

Was Lyric's first day of school today, he has to catch the bus a 10 min walk away at 7:30, so he's about to become quite the early riser. The day went very well, the building is very big compared to any of his previous schools, this is a middle school grades 6, 7, 8. Lyric was very awestruck to the point of excitement, wanted to explore everything and settled right into the class/ resource room as if it were his own.

The teacher seems really good, perhaps too good, was an athletic man and the room is staffed by 6 TA's, these people are more experienced with someone of Lyric's size. There are several other autistic children as well as some adorable down syndrome kids, we all went for a walk to the local park and played on the equipment there.

Was a good day, funny too because there happened to be an assembly that morning, Lyric stood in the main foyer on a stage, and flapped happily away at all the kids as they meandered past on their way to assembly. I am sure he made quite the impression... the world is such a joyous place for Lou (Lyric's nickname).

Wyatt is still plugging away with his microscope, making observations and sketches on just about anything magnifiable.

I have been struggling with pressure exerted from all sides on my decision not to see Ayn, not that I'm wavering just wish my reasoning was better understood. Will write something up for everyone soon.

Sept 18............Day 95

Was a very busy day today, Lyric finally starts school tomorrow and wanted to make sure everything was ready. Wyatt also has been working with his microscope alot and he needed help preparing slides. Got to spend some time talking with an old friend too, he was able to help me keep things in perspective and redirect my energies.

Ayn never drifts far from the forefront of my mind though... it's like an ever present void, not the existence of something but the lack thereof. This house once teemed with her sounds: blaring cartoons, music, singing and laughter... filled now with eerie quiet. So much of what we did as a family centered around Ayn, she was very often the navigator of this ship.

Lyric is always so happy go lucky and Wyatt is considerate so Ayn often selected our activities. She loved to bake, chocolate chip cookies or pink cake, she knows every incredient and measurement we need. But definitely her favourite thing was to listen to music and write, such a creative little girl... now dulled and sedated.

Really makes you wonder how such treatment could be considered to be in her best interest... within hours of removal without ever having spoken to me or anyone else who knew her. Where is the logic... where is the reason... where is the empathy?

Sept 17........... Day 94

It's hard to stay aware of the bubble I find myself in, always reading these documents, white papers and transcripts. I try to follow cases everywhere yet focus on BC and the CFCSA. The legislation across the western world seems to be crafted very similarly, as if each modelled off the same template. Quite foreboding reading, it does however tend to distort ones perception of the present. ...Hence I have to be ever aware of all elements of policy transformation. Simultaneously I have two boys to care for, a household to manage, therapy to structure and memories of a little girl suffusing my every thought. Every minute becomes very precious and prioritized, there is simply not enough time in the day to accomplish everything I would like to. Spent quite a bit of time talking to Amie last night, we discussed the visitation, something we strongly disagree on. Amie and myself are both very thoughtful and stubborn people, but easily find union on one very important matter.... our love for our kids. We do not question one anothers motives. This decision of mine has been an incredibly difficult one and quite controversial, I will endeavour in the coming days to justify my actions in a doc, as many have questioned my rationale. This whole nightmare seems to get more surreal as the days pass. If anyone has a question they would like me to address here feel free to PM me or email me at: , let me know if you would like your name included with the question, or if you would just like to hear the answer.

it's September 16th, day 93 I guess.

Ayn at present is in a foster home, living in a separate suite downstairs with 24 hr caregivers. She is being medicated daily with Risperdal, and sporadically "as needed" with Seroquel if she tantrums. Benadryl and melatonin are also administered. Both Risperdal and Seroquel are neuroleptic (nerve seizing) atypical antipsychotics, with long lists of side effects.

She attends the same school she did last year, as a result of which I have had to move Lyric to a new school, which fortunately does seem to be very suited to his needs. Wyatt is studying the eucaryotic cell, learning about integers and working away on a book report about the revolutionary war.

Today for me was a bit of recovery, since yesterday morning was surreally difficult. The reason being that I am facing a process which is multifaceted yet each path takes months.... months.... It has already been months, why subject her to this? Because she was unruly? Because she knew just how to get her way at school and bullied them around. She is a little autistic girl, she doesn't understand how sentient we all are, this is her universe and she does not want to be told what to do in it... but she is learning. And she has gotten so much better, I know what the school is facing I have faced it too. But long ago I succeeded in teaching Ayn that violence will not get her what she wants, that she needs to use her words.The school system I'm afraid is simply not ready for some autistic kids just as they are not ready for it.

Ayn is a very bright little girl, her disability does not lie in her vocabulary or intelligence but in her social interaction. She is affectionate and caring but solitary and emotional. She loves music and art, photography and the internet. She does not need to be drugged for her "well being" she was perfectly happy in the home. And when I think about this taking months longer I am flooded with a range of emotions.

So today I spent the moring getting the boys on task, I had a meeting with community services at 10:30 til 12. Chasing moments here and there to work on what I can, always able to think about this but time to work on it is more limited. Kim has been a huge help, he watches the boys daily at this point, which is fun to watch as wyatt and kim try to make eachother and lyric laugh. budding comedians.

1 comment:

  1. These updates are great, Derek. I know they must often be difficult to write, but it is so helpful for us who want to be kept in the loop and up to date on what's happening with Ayn. Thank you.