"Autism & Memoirs of an Old Maid"…C'hele's Story

July 1, 2015

Autism and the Vaccine Link, My Opinion

I think most of us know that autism is caused by a gene that is passed from father to child. It is not uncommon for mom to carry this gene as well, though it’s rare. What bothers me is that people seem to think that autism is solely caused by vaccinations. I don’t believe this to be true. From all my readings and my eleven years of working for these individuals, the autism gene needs to be “awakened” and this is where vaccines come in. It also can be awakened though environmental factors too. We all know that vaccines are detrimental to a person’s health. Vaccines filled with aluminum salts, formaldehyde and mercury. They use these toxic substances because these substances remain permanently in the body. So, what better way to make the vaccine formulas stay in the body?

Unfortunately, vaccines cause all sorts health problems (immune system problems etc.). As much as it protects a body from particular deadly viruses, it’s never a guarantee either. My daughter was not vaccinated till FIVE years old. And I had to do it. She only had one dosage to shut people up (like school nurses) and she never got any more throughout her school life because I don’t like them. Caela was diagnosed at FOUR years of age at Sunnyhill Hospital. Her autism was triggered through what I’m sure was stress and anoxia damage during birth. She came out a blue colour. I had an extremely difficult labour with her- so bad, that they could not perform an epidural because my muscles were too tight and the anesthesiologist could not get the needle though the vertebrae. Michaela was born suddenly when she didn’t want to come out. It was crazy.

I read an article about a study Japan did some years back. They told parents not to vaccinate their babies/children until they were ready for school (five years old). They saw the rate of autistic children being born drop. Hmmmmm?

I read that a baby’s immune system is not FULLY DEVELOPED until three months of age. It was not mandatory when my daughter was born but I believe that babies now as early as one to two months receive their first vaccination shot. It might be different in different areas. I asked my doctor, “Do babies have a different, lesser amount given to them compared to adults? NO, I was told.

So what the hell? Babies who possibly carry the autism gene receiving adult dosages of lethal vaccinations before their immune system is fully developed?

Common sense to me. Temple Grandin talks in her book “Thinking in Pictures, My Life with autism” that, “Research during the last ten years confirms that autism, PDD, and Asperger’s all have a strong genetic basis. Craig Newschaffe, Johns Hopkins School of Medicine, estimates that 60-90% of autism cases are genetic.” Temple goes on to mention “Researchers also confirm previous studies that show that relatives of people with autism will often have many milder autistic-like symptoms.”

My daughter’s father used to tell me, “It’s all in your head! There is nothing wrong with her! She’s just like me!!!!!”

After much nagging from me for him to get tested, he finally did so after many years of fighting. He came out with a diagnosis of high functioning autism, ADHD and Dyslexia. I have met many women throughout my career who talk about their husbands being difficult regarding their children being diagnosed with autism. Then they started seeing the quirky behaviour and the like in their husbands.

There is no doubt in my mind that all these things I’ve mentioned above, play a part in creating an autistic child. God Love them.

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September 30, 2014

Good God. I’m Back!!!

Filed under: Uncategorized — Tags: , — C'hele @ 13:31

Life has been almost overwhelming for me the past few years. My Autistic daughter Michaela, has been more challenging now than ever now that she’s nineteen. I promise to talk further about this soon because adult transitioning is no pic-nic. I don’t know where to start! So. I plan to write simply in 500 words or less. I think this way, I’ll be able to write more often. Hopefully each day.

Okee Dokee.

On September 6th my partner, my daughter and I moved to a beautiful home that sits on 2.5 acres. Its situated on the side of a mountain overlooking a lake. Its lush, green, and so very beautiful. The mountains around me are abundant with evergreens and they stand like arrows as they buss the sky. I wake up each morning, I put on my winter coat (believe me it gets cold!) and sit outside with my coffee to observe the moist, dewy clouds drift by and dissapate into the atmosphere. Even when it rains, its nice to sit outside. My whole view can be obscured with a moist, misty-white haze as it baths my body in its spray. I am renewed, I feel fresh, and most of all awake! Maybey a little wet too. There is something almost mystical, being amongst such energy. There is no better way to soothe my soul. I am grateful to be here.

C’hele

August 22, 2013

Autism: Person With Disability Benefits or PWD

For six months, I have been busy arranging for my daughters PWD application benefits. PWD means Person with Disability. This is government assistance for persons with a designated intellectual or physical disability.  The application form is approximately twenty-one pages long and is in divided into three sections.  WHAT a bitch this application is!  The government here in B.C., has changed the application process making it easier requiring parents and the applicant to only have to hand in a Psycho-Educational Report from any Psychologist.

This change occurred just as we were completing the application.  I had my doctor fill out the first half (we did it together because wording on the application is EVERYTHING and I had to make sure my doctor remembered details). The second half of the application my daughter and I completed. We never did fill out the last portion.  The third section of the application is for a second professional to fill out. We never filled it out because the application requirements suddenly changed.  Michaela and I went to our Ministry appointment to hand in the application along with a half-inch worth of supporting documents of Michaela’s disabilities. We were determined to cover all our bases because Michaela falls into a very dangerous grey area.  Michaela, myself and her doctor know, she would NEVER be able to hold full-time employment due to her very high anxiety and social-communication-sensory challenges.  

The Ministry ended up calling me, claiming they would be sending me back the application form to be completed.  Upon speaking with the facilitator there, I told her that due to the new application changes I didn’t have to?  Technically all I needed to hand in, was the Psycho-Educational Report.  She tried to argued with me. So I asked her to seek out the photocopy of an email I received from CLBC that I included in the PWD package. CLBC or Community Living British Columbia, is an organization that supports special needs adults and they’re families and it was them, that informed me of the PWD changes. 
Guess what?  She didn’t have a freaking clue about the changes. In fact, she had NO clue as to what I included in the PWD application package.  Why would you call someone without checking out the WHOLE application package? Feeling very frustrated, she found the photocopy and told me that she would check into it with her boss and then call me back. She was very upset that she was not told this information.  She called me back and I was not required to fill out the third portion.  There has been a lot of challenges with this though.  The Ministry called me again and asked that I come by to fill out a one page form.  Upon seeing the form, and making a long story short, it asked that I/we “tick” off whether Michaela was deemed Mentally Retarded or not.  What the heck?

They obviously still did not read all the information I sent them along with the application. It states very clearly what Michaela’s disabilities are. *SIGH*.  SO.  Backing up a bit, I was told to try and apply my daughter for CLBC services.  I did, and we were denied as Michaela’s school psychologist did not deem my daughter “mentally retarded” and this was a requirement to be able to receive CLBC services.  No problem, we were totally o.k. with this.  But now, I’m thinking: “If Michaela was denied CLBC services because she is not mentally retarded, will the government deny Michaela PWD benefits due to the same reason?”

I suddenly felt sick to my stomach with sudden fears about Michaela’s future.  OMG, how is she going fare?  So. I don’t give up and I immediately call CLBC and talk to a facilitator there.  SHE WAS WONDERFUL.  She informed me that CLBC requirements for “a mental retardation label” will not apply to the PWD application.  However, upon talking, she agreed with me that the one form the ministry wanted me to fill out, did not apply to Michaela whatsoever.  She herself, questioned why would they ask me to sign it?  So she calls the ministry in Victoria.  The facilitator there tells me NOT to sign it. Instead, due to the misfortune of filling out the PWD application while new changes are occurring at the same time, the facilitator in Victoria feels that I should complete the application booklet. She will try to locate it and send me the third portion. 

NO PROBLEM. Anything to make this whole process less complicated!  Digressing just a bit, I ask the facilitator at CLBC, “I thought the language for special needs had changed along time ago and BANISHED the term Mentally Retarded?”  I loathe that label! She told me I wasn’t the only one and they are changing the language to “Intellectual and Developmental Disabilities” this year.  GOOD. 

I have yet to receive the third portion of the PWD application.  More phone calls were made yesterday attempting to find out what is going on.  I have to wait a week because people are on holidays.

I’m told that PATIENCE IS A VIRTUE.

SO!

I want all my readers to know and be aware of these things if you live in British Columbia:

a.  If your applying for PWD (or for your loved one), be sure to send with your application, as many documents from credible sources that confirm the applicant’s disabilities.  My opinion?  More information, the better. You do not want to give the government any chances of delaying your application or denying the application.  To challenge a PWD denial, would be a major headache and I don’t want to see anyone go through that.  So send the Psycho-Educational Report along with any documents from Children’s Hospital, Sunny Hill Hospital, Doctors, SLP’s, Child Psychologist/Psychiatrist, a Registered Nurse and so on. 

b. If you are asked to fill out any extra forms from the ministry that raises your alarm bells? If the language doesn’t sound right?  DON’T SIGN IT until you check it out first! FYI – The form that raised my alarm bells was called a “YOUTH TRANSITION CONSENT: AT HOME PROGRAM MEDICAL BENEFITS AND INTELLECTUAL DISABILITIES.” This form will not apply to just anyone. At home program?

c.  Language is everything when it comes to documents for special needs individuals.  Know what your talking about and if you struggle with it? Seek out a professional to help you with any of the forms.  These people are Teachers, Advocacy Institutions like CLBC & PLAN, Pediatricians, Family Doctors, Speech Language Pathologists and if you have Autism Funding?  Many specialists will be covered under the funding and you wont have to pay for it. 

Lastly?

If you’ve reached the PWD Benefits stage, I recommend lots of Vitamins!
Because if you’ve reached this far?  You can better avoid any possible mental health breakdowns caused by stress. Yup (I’m pumping myself up here, lol).  Because we as parents of a child with an intellectual or physical disability? We’re not done yet.  We need build our reserves for our future adult children!

So if you’ve reached this far, know that I stand and applaud each and every one of you as a care-giver, parent or legal guardian of a special needs individual. 

This job is not easy.  We are just *F….reakingly* amazing human beings.

Yup.

August 18, 2013

TED TALKS

Filed under: Uncategorized — Tags: , , — C'hele @ 10:39

TED TALKS

Ever checked out the website?  I don’t know where the heck I’ve been.  I just discovered TED TALKS this past year! There are wonderful talks on this site on on various subjects…

http://www.ted.com/talks

Check out these talks regarding Education and Autism

One of my hero’s is “Sir Ken Robinson” and I’m in total love with this man’s mind.
Check out what he has to say regarding education!

Ami Klin: A new way to diagnose autism.  This was a fascinating talk.

Another hero – Temple Grandin.  Check her out on TED TALKS.  I was fortunate to see her live and when I saw the work she put in for the Ted Talks, I was both astounded and proud of her.  She has come so far!……

Check it all out.  I warn you though, its addicting!

August 17, 2013

Autism, Developmental/Physical Disabilites and School Inclusion

It is a known fact that for anyone who has Autism, Down Syndrome, or other developmental disability, that a good early education is vital.  Early Childhood Education and continued support within Elementary schools play a HUGE role in the cognitive, sensory, social, communication & academic development within these individuals.  I give huge kudo’s to those teachers and support staff (ECE Educators, EA’s and Specialized EA’s) who work with these individuals in thier younger years.  It is anything but easy.  I’ve worked in these fields so I know first hand of the challenges.  Not only do they have to teach, they have to contend with so much behaviour and implement behaviour programs on top of everything.  It can be a tough balancing act.  My preference however is working in high school.  High schools have very different programs and they vary within each school.  The school where I work,  focuses highly on academics within the whole school body.  This includes Resource Rooms.  In our Resource Department, we have students divided into two large groups: 

1. High Incidence students which include: ESL students, students with learning challenges who are on “adapted” not “modified” programs, students who mainly display “behavioural” challenges (this would be the students who are capable of learning but have not much guidance from home.  Drug dealers, students who regularly come to school high on drugs, bring alcohol to school etc.).  Students who have Aspberger Syndrome would be included in here too unless they have other learning challenges/lables that inhibit them from being in a regular academic program full-time. Individuals with physical disabilities (wheelchair/CP students) who have mild learning challenges are also included within this category.

2. Then we have our Low-Incidence students.  Students who have moderate to severe Autism, Down Syndrome, students with aggressive MD, Prader-Willi Syndrome, FAS/some FAE, Double Cortex Syndrome and other Severe Siezure Disorders, and students with other rare genetic disorders. 

The challenge for me, why I prefer to work in high school?  Is because the school in which I work, being strictly academic there is alot of behavioural issues and I specialize in behavioural modification.  There is also the challenge of attempting to squeeze in teaching life-skills, social skills, communication skills.  There is no program in our school that teaches our students these vital skills.  Technically, is it not our job as support staff to have to do this.  But we do it because we want “all” our students to be as sucessfull as possible when they reach adulthood.  None of our resource teachers know how to implement these programs.  So our Specialized EA’s do it silently despite the high burn-out rates. 

Why?

Because we love our kids for the amazing human beings that they are. Each and every one of them.  We think about thier future as they reach adulthood. This is why many of us choose, despite many of us having a teaching or psychology degree, to work as an Educational Assistant.  We bypass all the administration crap and we get to work more 1-1 with our students. 

So my question is: Can anyone answer me “WHY” full inclusion in academics for our Low-Incidence and some High Incidence students should take complete precedence over Life Skills? Over Social/Communication Skills?  Over replacement behaviour difficulties?

Is it wrong to split the day?  Half the day academics and the other half in Resource teaching the other vital life-skills?  Resource students should be individualized.  Perhaps split up the high inc., and low inc., students into two seperate programs.  As long as both low & high inc. students can read, do basic math, use a calculator, tell time, know how to write and such?  Those are vital life-skills.  Is it, unless the student show’s particular interest or talent, necessary to stick them in Chemistry class? Literature class? Political Sciences?  We have individuals who have Down Syndrome in these classes.  Very low academically, who display major behavioural problems?  What are they learning, really?

At the end of every school year in June, our support staff department sit together to reflect on the past year. We especially reflect upon the students we’ve worked with for five years and have just graduated.  What did these students take with them?  Will they remember all the skills we tried to squeeze in, with them into adult-hood?  Believe me, our hearts ache, when we think about some of them we feel may not be successful.  But we always hope. 

It’s incredibly hard not to let anger over-take us though.  Especially when a student whom I’ll call “R” who has finished his “thirteenth/over-aged” year and will not be returning to school.  When I walk with him for the last time to the bus stop outside, “R” turns around to look fondly at the school with tears in his eyes then looks at me and says: “What am I going to do without you guys?”

Oh, my, God.  I’ve been punched in the guts with his words.  A huge hug for him from me and I say “you know where we are if you ever need us. Anytime, and don’t be to proud to do so”. “R” has incredible difficulties accepting his challenges and just wants to be like everyone else. He is an extremely proud individual.  So much so, it will definitely affect him later in life.  I struggle not to burst into tears myself and we get on the bus. I wish all our kids a great summer and tell them so.  There are five of our students who’ve gradudated and will not be returning.  Walking back to the street I face the bus.  I look at the faces of the students not returning.  The looks of combined sadness and fear are imprinted on them deeply as they gaze out the bus window at me.  Like a typical mom, I cant just walk away from the bus.  As the bus pulls away, I stand there waving until I cannot see the bus anymore.  Then I run back to the school, run into the staff washroom and cry.  I cry because I will miss them and I cry because I witnessed thier fear of the future and I worry like hell.

“All individuals with developmental disabilites have the right to an education and inclusion to regular schools”.

But “when” will people learn?  Balance is the key? Full inclusion for Low-Incidence students “will not heal them” of thier disabilities. I hear this alot from people who have autistic students or parents.  I have personally heard a teacher in all of her arrogant glory, claim that “I’m going to make them (her students) not Autistic!”  Those students?  One of them had to go to a school that specializes in severe autistic behavioural problems, another had to go into a care home, and my daughter? Well, if you’ve read this blog enough, you’ll know.  She’s come along way with support from myself and her grandparents. And that teacher? Terrorized my daughter.  To this day she fears that woman and hates her. For “years”, I’ve had to work hard building my daughter’s self-esteem and work on convincing her that not all teachers terrorize as that teacher had.  Anyhow, I digress.

So what do you think?

I’ve spoken with some people who believe that all low-incident students and students who will not attain a diploma in high school,  be in full-time specialized schools that focus on social/communication and life-skills to prepare them for adulthood. Some believe that providing at least twice weekly field trips to a regular high school whilst in these specialized schools provide enough inclusion with thier peers.

Some people believe that part inclusion within high schools are best in order to gain the best of both worlds (academic and social/communication/life-skills).

Others, believe that full-inclusion in schools for low-inc. students or students who will not attain a diploma are best.  

Another thing of importance to add:

I believe it “vital” that programs be created in high schools for typical (regular) students for credit, to work with special needs individuals.  1-1, peer to peer work.  This would benefit anyone who intends on working with special needs individuals, for those working towards a Psych. degree or counselling diploma/degree in the future  etc. Working on educating others in high school should always be included as people, especially those who are high functioning autistic/Aspergers, are almost always misunderstood and shunned as “wierd”.  Those with “invisible disabilities” always fall to the way-side and fall into some “grey area”.  Special attention to these individuals should be mandatory without humiliating them.  Regular students are still “frightened” of people with disabilites.  More work educating them needs to be done.

I have been advocating for such programs within schools. Due to lack of funding and perhaps ignorance on the importance of such programs, my expressed opinions fall on deaf ears.  Programs such as this, are always a win-win situation on both sides.  Both individuals learn from each other directly with teacher/EA direction from a distance.   What better way for these students on both sides to learn?

Sometimes the simplest of ideas are the best ones!  In the past, I have worked in only one high school who had such a peer to peer program in the Resource Department.  The first and last of such programs that I’ve seen.  It was both amazing and fascinating to watch from a distance, the kinship and connections made by both A-Typical and Typical students.  Friendships that lasted throughout thier whole high school years.  And many of the regular students who signed up for this program, went on after school to recieve thier counselling diplomas or degrees. 

On a parting note: When special needs individuals feel accepted in society, they find the strength within themselves to become more independent and don’t fear asking for help when needed without appearing “help-less”.  With a healthy self-esteem, people with disabilites are anything but help-less.  But they do require support without demeaning them.  And the rest of society?  When the fear is taken away, and we accept and support people with intellectual and physical disabilites?  We become better and more evolved human beings.  Its as simple as that. 

What are your opinions?  I welcome and respect all comments!

August 14, 2013

Autism: What Spock Can Teach To An Asperger Individual (no kidding)…..

A conversation between my Asperger daughter and I one day after school……

Setting:  At home, approximately 4:00 p.m. My daughter Michaela is in a major verbal and emotional melt-down state. Michaela had just got off the bus from school.

 

Conversation:

 

(Explosion)

“Mom, I’VE HAD IT! You know, I just cant believe HOW STUPID people can be!!!!! “

“And you know?  People can be SO MEAN!!!!! I JUST DON’T GET IT!!!!”

Me:

“Uh-oh.  What happened?”

Michaela:

“Get a load of this (Michaela says this phrase alot-  a hint to me to always pay attention).”

“During our math block today?  “B” gave us our questions and we coulden’t do it. So when I asked for help?  He accused me, saying that it’s not that I don’t get it, I just don’t want to do it!!!!”  “CAN YOU BELIEVE THAT?”

“And then, one of the E.A.’s said outloud that he agree’s with the teacher and that we are just being lazy!!!  GET A LOAD OF THAT!!!!!!”

Me:

“So what happened then? Did the resource class say anything? Did they agree?”

Michaela:

“Mom, I got so mad so I stood up from my desk.  I stood up and pointed my finger towards that nasty, freaking E.A. and told them both how OFFENDED I was! I told them HOW DARE YOU ACCUSE ME OF LYING! Because I truly did not understand the questions!” I DID NOT LIE!

“HOW DARE THEY!!!!!”

Me:

“Did the class say anything?”

Michaela:

“YEAH.  They actually stood behind me and told the teacher they truly did not understand the questions either.”

Me:

“So then what happened?”

Michaela:

“So then, I turned around in front of the teacher and told him he needs to learn how to teach better.  You know?  Learn different ways to teach kids.  GET A LOAD OF THAT!”

“Then I walked out of class I was so mad. I needed to cool off.”

Me:

“Ummmm.  Where did you go?”

Michaela:

“I just walked to the bathroom, hung out there for five minutes.”

Me:

” What did “B” say?”

Michaela:

“He told me I needed to relax. So get a load of what I did?  As I got up to go to the bathroom?  I took my worksheet, walked by him, looked him in the eyes and threw the questions in the garbage can!!!! Then I went to the bathroom. Then I turned around to look behind me and GUESS WHAT?”

Me:

“What?”

Michaela:

“The rest of the class doing the same questions? Got up and THREW THIER WORKSHEETS IN THE GARBAGE TOO!!!!!!!!!!!!!!”

“Get a load of that hey?”

Me:

“So did the teacher become angry with you and the rest of the class?  Did he say anything to you all?”

Michaela:

“Nope.  He diden’t say one thing at all.  Instead he told me I could read my novel (Michaela loves reading books).”

Me:

“Wow.  Exciting day hey?”

Michaela (now even more elevated):

“Mom, I’ve just SO had it!  The next time, I’m going to freak on “B” again the next time he says something so stupid to us.  It’s clear mom, he doesn’t get it.  He doesn’t understand us.  AT ALL!!!”

Me:

(Thinking to myself, Oh, Crap.  How many times have we had this discussion about self- control, self-monitoring? She just doesn’t get it.  She is so emotionally elevated right now, if she could, she would go back to school and smack the teacher herself).

**Note to the Reader:  Michaela is one of those very rare, emotional/social Asperger individuals.  Not at all like the introverted Aspies.  She may be emotional/social, but that does not change the fact that she still displays obvious social/communication difficulties.  Theory of Mind difficulties still apply here!

(I then think to myself, it’s time to try a new tactic and I’m going to wing it!)

———————————————————

5 minutes later:

Me:

(I decide to revert to humor to handle the situation).

**Note to the Reader

:  Never, never, never resort to giving advice to an Aspie individual on what to do when they are so adamant about something. Unless you want to suffer thier wrath.  And believe me, they can give it because (they think), they are always smarter than you. They will not tolerate such insult! And they can be incredibly verbose about thier opinions!!! So consider yourself warned, lol. 

The Setting:

Michaela is now sitting at the kitchen table, calming down with juice and a few potatoe chips.  I am puttering around in the kitchen talking to her and making dinner at the same time attempting to handle the situation with some placidity.

Me:

“So Caela, how do you think Spock would of handled the situation?”

Michaela:

“Mom, what the heck are you talking about?”

Me:

“Seriously, how would Spock handled the situation?  Does he flip out in stressful situations?”

*(Now Michaela is crazy about Star Trek)

Michaela:

(Giving me a very wide, deer in the head-light look), “Not at all.”

Me:

“So let’s talk about Spock. Let’s discuss just how many ways Asperger Syndrome and being a Vulcan/Human Hybrid are alike.”

The Break-down of our conversation:

We have some crazy humor in our family.  Michaela caught on immediately that this was going to be a light-hearted conversation with a point! Making a very long story short, we discussed the challenges Spock has being half human, half Vulcan. The Vulcan side of him must control emotions. However, the human side of him constantly provides him challenges in order to control those emotions effectively. Yet Spock must accept his humaness too.

I pointed out in the first Star Trek movie, that Spocks own father tells him that emotions run deep within Vulcans, even deeper than in humans.  So Spock kind of has a “double-whammy” of emotions to control. I pointed out to Caela that this might feel like her when she’s “really” upset. She agreed. 

Lesson:  Accept the emotions you feel.  But learn, like Spock, how to control them in social situations.  It is ok to stand by your convictions, it is not ok to “freak-out”. 

Vulcans are quite logical.  Humans not always. Those illogical people? Are Klingons.  Learn to accept that there will always be people out in the world who don’t think before they act.  Instead of worrying and trying to figure out “why” people act so carelessly, tell yourself that they are simply being “illogical.” Aspie individuals can obsess trying to figure out certain social situations.

Lesson: To teach Caela “how to walk away or let it go” and get on with life.  It’s not worth obsessing over, or having to figure some Klingon.

Vulcans do not raise thier voice when discussing a particular subject.  They don’t hesitate to give facts when trying to make thier point.

Lesson:  Instead of making a scene in class, go up to the teacher and respectfully educate or remind, him how Asperger individuals think, in private.  I told Caela that she should advocate for herself and not fear it (she does).  There is no harm in educating others on the complexities of the Asperger’s mind. It will provide huge benefits for her in the long run and maybey the for other person.  It’s quite logical!

Vulcans do not lie.  Neither do most Asperger individuals. 

Lesson: Don’t change and continue to stand up for yourself if you are called a liar.  But learn in social situations “when” it’s ok to be truthful and when it is not.  Learn how to be strong enough to tell people “you would rather not talk about it or, you would like to speak to them privately, etc.” If it becomes totally illogical?  Walk away.

Yep.  We are convinced that Aspies and Vulcan’s are distant cousins and all “illogical” people are Klingons. 

After talking like this for about an hour and a half (no kidding), our stomach’s were in knots from laughing. Though I am not a “huge Trekkie” and some of my facts may be incorrect, I don’t think I was too far off. Michaela would have reminded me to be sure.  The main thing is, she got the points that I was making and I think she will remember the Spock analogy in challenging future situations.

After our long, humorous talk, Michaela and I went to watch Star Trek. Michaela is a huge ET, UFO buff.  Comparing her to another alien being (no kidding) and an intelligent one at that, was the best thing to do in order to teach her a few social rules.  She would die should I confess this to others, but Spock really is, a good teacher for her! *laughing*

So far things have been going much more smoothly at school.  Now, Michaela comes home with a smile on her face, chuckle and say, “I met a Klingon today” or “I had a Spock moment” as she walks to her room.  Its now our own personal joke. So far, the melt-downs have lessend considerably. And believe me, her teacher is feeling it- Michaela is constantly in his face asking about the “logic” in his actions (in a respectful, joking way)!

All I can say? 

You Go Girl!

August 12, 2013

Autism: Your Child After Your Death

Filed under: Uncategorized — Tags: , , , , — C'hele @ 22:16

Please read this from beginning to end.  There is a reason for it:

There is a very informative book that came out ohhh, in 2009 or so.  This book was planned and written by a group of people and families who have children with varied cognitive and physical disabilites. The idea to create the book was incited by  enormous fears of the unknown- who will care of thier children upon the parents death? 

The name of the book is, “Safe and Secure, Six Steps to Creating A Good Life For People With Disabilities” by Al Etmanski. 

This was a hard book for me to read.  For a long time.  Who really wants to think of this now when your only in your 40’s? Eeek.

The people who wrote this book belong to an incredible network: “Planned Lifetime Advocacy Network or PLAN”.  I never knew it, but PLAN has been around for twenty years.  This network is led by familes and assists other families how to create a secure future for thier special needs children. 

The book is divided into six steps or chapters:

1. How to Clarify your Vision

2. Nuturing Friendship

3. Creating a Home

4. Making Sound Decisions

5. Achieving Financial Security

6. Securing your Plan

Plan states:

“It is a plan that you create, control and direct. it is focused on the here and now. It is also geared to a time when you will no longer be around”. 

Reading this book two- three times, I cannot state enough just how incredibly helpful it is.  Painful as it is as one journey’s through it, the immense relief one feels afterwards when you have completed the journey, is worth more than its weight in gold. 

Plan says it perfectly:

“So many thoughts, ideas, worries, and concerns go rolling around in your head.  You can hardly remember them all.  How could you expect someone else to? There are so many confusing messages and countless pieces of advice, and so many complications.  The need for resolution lurks just beneath the surface, emerging at the most unexpected times”. 

The nice thing about this network, is that the book is free of charge for families here in BC.  I found mine in a Pharmasave. The other nice thing about this network is that you have a choice.  You can either utilize the book yourself, or you can contact PLAN and hire them to assist you through these processes. 

You can join PLAN by becoming an Associate Member; recieve newsletters, e-zines, publications, attend workshops. Or, you can become a Lifetime Member and have them work for you to assist develop a personal network for your child who has a disability. 

Now.  PLAN is located in Vancouver, British Columbia.  The up-side to this is that they do help families all over the world. They still provide on-line courses, workshops, training, consultation etc. They mentor groups of families so they can adapt the PLAN model.  They distribute books, CD ROMS’s and DVD’s and more.

In the book, it mentions that: “The Institute currently supports over 40 replications around the world.  It offers an annual Leadership Training Course for people interested in learning about the PLAN model.  For those interested in learning about social movements, the Institute offers a four day retreat called Thinking Like a Movement, which takes place each January”. 

I urge anyone who has a child or teenager with a developmental disability to look into this if you haven’t already prepared a plan for them after your death.  I wish I knew this information early on!

Contacts:

PLAN Institute for Caring Citizenship

PLAN – Planned Lifetime Advocacy Network

www.planinstitute.ca

www.PLAN.ca

Phone number:  (604) 439-9566

Fax:  (604)439-7001

Address;

                 260-3665 Kingsway,

                 Vancouver, B.C.  V5R 5W2

                 Canada

 

 

Work Challenges and Blessings….

Filed under: Uncategorized — Tags: , , , , — C'hele @ 03:36

This past year at work has been incredibly challenging.  Working as a specialized Educational Assistant, its not been the students that I work for.  Like mostly everyone else, it’s been mostly Administration.  No surprise to hear. It has not helped that this was mixed with personal issues at home with my daughter.

However!  Upon tossing around quiety that perhaps its time that I find other work elsewhere, I was suddenly bestowed with a gift on the last day of school. The gift was given from a girl that I worked with in semester two who has an intellectual disability along with many other challenges/labels.  

Her gift was an unexpected letter (typed exactly as written):

Thank You

“Thank you C’hele for helping me with stuff and thank you for supporting things for me.  Everyday you always make me laugh and everyday I make you laugh.  You are very creative and your writing is very beautiful and you taught me to be creative just like you. And Thank You for helping me with my booklet and I really appreciate you helping me. I hope I work with you next year because your really nice. I hope I see you next year have a great summer.

From *****

P.S. If you’re reading this I want to tell you that because I’m writing that is because I really like you as a teacher you’re a really good teacher is because you help me alot to things I diden’t know and I really appreciate that from you.  Thank You C’hele for helping me this year see you next year.

—————————————————————-

The Universe has spoken. And who am I to question it? *Sigh*. Jeezus, everytime I read this it brings tears to my eyes.

It is, what it is.

My kids need me as much as I need them, the Universe Bless Them.

Administration?  Whatever. I’m there for my kids not them.

 

“Information’s pretty thin stuff unless mixed with experience”. 

~Clarence Day~

 

September 25, 2010

General Things on My Mind….

Filed under: Uncategorized — Tags: , , , — C'hele @ 20:03

1. School is currently a living hell. It’s been fourteen days since the first day of school and I am absolutely exhausted already. My feet have literally been hurting when I come home and all I want to do when I’m home is go to bed. For the first week, I came home and did some yoga thinking that it will help work out the stress in my body. Wrong. I suppose that the stress is worse than I originally thought because after that first week I ended up pulling muscles. I’ll be looking for a new school to work at. The resource room I’m currently working in, is too large and employed with staff who’s mentality is “each man to themself”. Working with a team approach is definitely unheard of. I dont do games, back-stabbing and sabbotague. I can honestly say that I’m done. Too many of these programs are anything but “child or student centred”.

2. I attempted to make an appointment with a chiropractor that specializes in sports related injuries. He’s excellent from what I heard so I made a phone call on my lunch hour one day last week. The stress my body is currently undergoing, is literally pulling my spine and neck out of alignment. I’ve had to stop doing yoga for the time being until I see the specialist. After discovering that it would cost me $268.00 on the first visit and that I would be unable to claim it on my medical insurance/extended health I was extremely disappointed not to mention disgusted. I would also have to pay an extra fee of $30 after each visit not covered under my medical as well. They also close at 5:30. I don’t get off work until 3:30 and the first appointment is an hour and a half. It would also take me an hour to get there from where I work. *Sigh*. I am so frustrated. I’m just going to have to hunt for another sports related chiropractor that works evenings and weekends.

3. My daughter is absolutely crazy about her new school. What a switch! she comes home everyday with a smile on her face and has funny stories to tell me when I come home. The teacher took all the kids in the resource room bowling yesterday as a special end of the week treat. They diden’t go to just any bowling lane either. He took them to a lane where the place was lit up in laser lights! Everyone had a blast.

To all parents with autistic kids take note: This is a prime example of the parent that talks the loudest gets heard first! Take notes and have your facts ready before you do battle and request your child be placed in another program. Be diplomatic and professional and you’ll be amazed what you can accomplish. Stressful, yes. But so worth it when you see your child smile with contentment and happiness in the end.

4. My Finnish language lessons are fabulous. My teacher is born and raised in Helsinki, Finland and has his master’s degree in linguistics. Obviously, he speaks many languages. “Hyvaa iltaa” (meaning good evening) was the first thing he said. Then he introduced himself and said, “Finnish is different, not difficult (but very democratic)! and I couldn’t agree more. In two classes I have learned so much already and I have so much yet to study (obviously). My mom is loving it. Mom speaks with a more formal tongue and she looks forward to photocopies of all my notes and handouts for updates. I dont think I would be this far ahead already without her. Today both mom and I will head to Chapters to order Finnish Dictionaries that the teacher recommends. We will also order instructional tapes to listen to when we’re at home. Both of us are very excited.

5. My boyfriend is now riding around on his Harley. He passed his learners driver test so now its legal for him to get out on the road to practice. I have to admit…..it looks fun.

6. Normally I always look forward to the change of seasons but somehow, I wish summer was around for at least another month. I feel like I never really got to enjoy this past summer it went so fast. Maybey thats my clue to go to the Carribbean for Christmas (I wish!).

7. I picked up a book on my boyfriends coffee table the other day. It’s called “The Good Old Days- They Were Terrible!” by Otto L. Bettmann. First published in 1974, its a book that covers the years from the end of the Civil War to the early 1900’s. The book gives an entirely different picture of the so-called gay, care-free Guilded Age of America. Eleven chapters covers a realistic approach to the air pollution, child poverty, crime, unemployment, corruption, neglect for the aged and disabled of those days and more. Umn, needless to say the book is informative of what that era was like but incredibly depressing. I thought things are shitty now- however, I would not trade era’s for the life of me. Interesting book.

8. I have to go and eat before I pass out. Have a great weekend everyone!

August 4, 2010

Autism: My Asperger Daughter and High School

Michaela like any other Autistic individual, is unique. She has been diagnosed with Asperger’s, ADHD, an anxiety disorder, and a mixed expressive/receptive language disorder. I have had the pleasure working with many Aspie kids and it is always intriguing to watch how they metamorph as they grow older for good or bad. So it has been with my daughter. Every two years or so, one or two of my daughters challenges will take prescidence over the others. Then in a few years, it will be the reverse. It all depends on what is occuring in her environment at the time.

My daughter is now looking forward to her grade 10th year and it just so happens that she will be in a new school this upcoming September. Change and transitions do not sit well with these individuals but it was a matter of picking and choosing my battles. Michaela’s grade 8 & 9 years were spent enrolled in a special program that focused mostly on academics until it switches over to life-skills training on her grade 11/12th year. For any autistic individual, two years is hardly much time to prep an autistic individual that faces a life-time of social, communication challenges not to mention other difficulties.

But that wasn’t the real issue. What is increasingly disturbing and distressing to me are the teachers who accept a position in a resource room/special needs program with virtually no special education training. For those teachers who may take on working in this area too lightly or deem it an easy position, have no clue the damage they inflict upon thier students. What’s worse, is that some of these teachers seem to have developed the belief that “they are going to fix thier students”. My daughter has had two such teachers, one in primary school for three years and a new teacher in her high school in her grade nine year. Many times I have found myself to be in tears due to frustration and anger and have thought to myself many times, “If I am feeling this way, how is my daughter feeling when her anxiety and sensory challenges are heightened ten times over?”

Yes. Her frustrations and anger has caused her to have many hysterical moments and spoken outbursts that she wishes she were dead. My daughter has always been enrolled in a modified program. She will never attain a regular high school diploma only a 12 year school completion certification.

So. What was the problem this past year? Shortage of support staff (E.A.’s) due to funding cuts. The teacher never persued to check on Michaela to see how she was doing in her electives courses. This means that her work was never modified and she struggled incredibly hard to keep up with her classmates. The teacher also insisted that Michaela participate and do all the final exams at the end of the year. This means doing the same exams as her peers in her classes without modifications or adaptations or an E.A. to assist her. When I inquired on this further, I realized that the teacher had not even prepped Michaela. No practise tests, no examples to provide so she could make sense of what it was that she would be doing. For goodness sakes- we prep our regular/typical students at our high school before finals!! I am not against Michaela taking a final exam- just to see how she does and providing she is o.k. with doing it and has been prepared for one. Throughout the year, Michaela was sent home with homework unmodified. After many phone calls to her teacher, unmodified work was still consistently being sent home. We spent many hours together as I showed Michaela how to break things down, proofread, etc, etc. My assistance caused me to be practically doing all of Michaelas work since she had difficulties with it. There were no instructions sent from school and due to Michaelas short-term memory issues she forgot to write it down in her agenda only to later forget details completely. So we winged it, but it sure caused some extreme exhaustion for both Michaela and I and it was non-stop! I work for a living with extremely behaviourally challenging students all day. Then I come home to my own autistic child who requires my assistance. At the same time, Michaela does not want to be told what to do like a teacher because I’m her MOM! *Ugh!*

After expressing to the teacher the hell that both Michaela and I were going through (all year in fact), told her all my conerns and “why” my daughter was working on unmodified work and “why” she is not giving me any logical answers, all I got was: “I woulden’t worry- this is normal for a parent of a child with special needs to be worried themselves”. She’s fine, she’s fine- she’ll be fine!” And then without expressing it I freaked. Was this her only response? Hell. The woman was not only extremely arrogant, but insufferable. She knew I worked in the field and yet treated me like some ignorant bone-head. She also later on implied that she knew my kid better than I. This caused some further fury for me.

The woman had made it absolutely clear to me that she had no understanding on autism or her students or she woulden’t of had said that. After having a very dignified freak-out hissy fit after the phone call, I immediately called the department of special programs of the school district (basically, her boss). They know me well because I once worked for them for almost seven years in the district.

It was extremely difficult to remain in a professional-like, calm manner as I talked to the woman who was in charge of the resource rooms in the district. I wanted so badly to yell at someone or cry- as I was so frustrated, angry and exhausted. I cannot tell my readers enough how important it is to know the facts, to have a clear understanding of your childs disability and to take notes throughout the year of what you see or question regarding school. It is so important that we as parents, keep an open mind as to what may be going on and to listen to the other side whether we want to or not. What our children are like at home may be an entirely different story at school. For instance, this year I found out that my daughter who is known for her impeccable manners, has quite the aggressive little potty-mouth at school. Let me tell you, it shocked me and when I questioned her upon it she confessed. So never say never. Peer influence is an amazing thing- good or bad!

Once I spoke to the lady in charge of my concerns, she said she would speak to the teacher and get back to me. Making a long story short, she confessed to me that I had some valid concerns. This “resource room teacher” had no idea how to effectively do her job. She diden’t even know how to modify her students work nor did she know how to implement learning strategies geared towards students with cognitive disabilities! I then immediately and kindly asked that my daughter be removed from this program and be placed into another program that I was aware of. This program has an excellent reputation and I wanted Michaela in it since the beginning but high special needs student numbers in that catchment area forced Caela to go elsewhere.

I am elated. Michaela is both freaked and extremely anxious over the change (typical of autism) so once a week we visit her new school. With the school’s floor plan map in hand, we walk around to where her new resource room is and discover where all other pertinent areas are. The regular visits are helping to some-what ease Michaelas extreme anxiety. By the end of summer, she will know by heart where everything is and avoid looking like a “newbie” or overly special needs” as she puts it. This school is in an area where priviledged kids reside and thus, the school provides so much more with regards to programs offered. These programs are right down my daughter’s alley so we talk about this alot as we walk throughout the school. I am relieved- now that summer is half-over, that my daughter is now excited and is looking forward to this new opportunity to move forward. But man, its not without its challenges. It takes constant repetition and reminders to soothe her soul.

Time will tell how things go. In the meantime, we will be prepping ahead of time and practice sewing and cooking before she takes these courses in school. This will boost her self-confidence so she doesnt look too vulnerable in front of her peers. It will help decrease the anxiety she will be feeling being in a new school. Michaela is always hesitant to try new things but after explaining to her that this school has an excellent cafeteria program (something her previous school did not offer) and that the skills she will learn will help her towards a possible future career, she is excited. She loves both cooking and food (eek!).

I will make further posts on how the transition goes and how she does in her new school in fall!

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