Autism/Asperger’s and University

Holy crap.  So much to tell, so much I have experienced.  Where do I start?  Well for one, I am currently sitting in the café of the university my daughter is currently attending.  I have been traveling 170 kilometers/106 miles five days a week to and from home to the university since August of 2016.  My Aspie/Autistic daughter is currently enrolled in the Culinary Arts Program here.  She is excelling amazingly.  This is an individual who has been in a resource room program her whole academic school life.  She is an individual who left her thirteenth year from high school with a thirteen year school completion certification, not a diploma.  She was told that she would not amount to much when it came to succeeding in a career or to not expect much if/when she gets a job.

She prooved them wrong. Soooo wrong.  This girl is in the top five of her class and is not modified whatsoever.  After high school, my daughter enrolled in the same university in a Special ed. program meant for those with high functioning cognitive and physcial disabilities of all kinds.  The program was to prepare and equip them with the necessary life-skills they need:  how to make a resume, cover letter, search for jobs. How to have proper hygiene and how to dress appropriately depending on the work you do.  This meant that for six months, all these students had to wear semi-formal, business wear.  No hats, running shoes, jeans and t-shirts allowed.

These students were trained and certified in First Aid, WHIMIS, Food Safe and more before they started their three different work experience programs.  Michaela successfully earned a certificate in every workshop. She worked as a Veterinary Assistant, as a pet grooming assistant and later due to my request, did work experience in the universities kitchen as a kitchen helper (This is not normally allowed.  Students must go outside of the campus to do work experience).  Her three years working as a kitchen helper in high school prepared her richly and both of us thought it would be a good idea to try and see how she would do despite her hesitancy.  So I spoke with the Professor of the Special ed. program and she spoke with the Chef of the Culinary Arts Program.  He was hesitant. Students must have grade ten math to enter the program.  Michaela had a grade six level.  So we enrolled her in a math class that went at her pace at this university.  Michaela fell in love with the cooking field.  She was determined not to let the math get in her way.  She worked her ass off for six months and eventually attained a grade eight level.  Michaela’s time working in the kitchen on her work experience displayed her confidence and she proved her worth in the kitchen. Regular/Typical students were asking her for advice!  Between the Professor of the Special ed. Program and the Chef, they spoke to the appropriate people in the university to convince them to allow Michaela to enroll in the program.  Grade ten math was ridiculous for an entry requirement they said.  Chef told them Michaela was more than adept and was knowledgable in the kitchen than most of his students!  Due to Michaela’s Special ed. lable and my heavy advocation, they allowed Michaela in the program.

Let me tell you, they are watching carefully too, to see what she accomplishes.  They are using her as an example to see how far she goes. She has just finished year one of this program with a B average.  Year two is crunched and ends June 2^nd.  She earned one hundered percent on all but three workbooks in which she earned a 96 percent average.

For a person who has been not taught any study habits or have completed a real exam in her life and has organizational issues, she done damn good!!!!!! Michaela early last year, produced a speech by request of the Professor of her Special Needs Program.  The program was in jeopardy of being extinguished and her Professor was busy trying to convince the universities administration the need for such a program.  In all their campuses.  Michaela nailed and sealed the deal with her speech and self-advocation.  It was at that moment I knew she had been paying attention to all my bickering about the importance of self-advocation.  She ended off the speech with “more and more autisitics are being born, you should assist because we are NOT going away anytime soon!  By the way enjoy the Indian dinner that me and my colleagues made for you tonite…….think of me when you eat the Naan Bread, because I made it!” This is a person who would have had a complete melt-down if she had to do an oral presentation in front of her class and she did this in front of approximately fifty people!!!

The Special Needs Program has been saved for now and will be opening further programs in their other universities.  I know because this Proffessor teaching this program is going around all grade twelve resource room programs in various districts to tell teachers of the programs existence.  I met her at my school.

I am so damed proud of my kid.  She is more confident, less embarassed and so damned proud of being an Asperger’s individual.  With my encouragement and pre-teaching she is advocating without hesitancy to others who may question the “oddness” with regards to her personality and actions.  People are shocked should she notify them that she is Autistic.  She doesn’t look like she has special needs and her behaviour and replacement behaviours taught to her, are mostly undetected to the untrained eye. She is so career focused.  Doesn’t give a damn about having a boyfriend, going out to parties, getting drunk and so on.  She is such a gentle but loving, tough-nut that she has earned the respect of all her male colleagues in the trades building.  She can banter and rebute faster than you can blink an eye and she does it in such a way that you know she has a point to say and she says it with utter-most mischieveousness, toughness and empathy.

My daughter is an Autistic Individual and a Leo.  Let me tell you, she know’s how to roar her truth as she knows it!

Autism: Caela’s First Day in her University Program

Today is my daughter’s first day in a real, unmodified, university program. The Culinary Arts Program. On the way to school, she admitted to me that she was nervous. We arrived a half hour early and she wondered what she should do to kill some time. I said to her: if you want to make a good impression, you would walk right into the kitchen and ask the Chef/teacher what she can do to help on the first day. Glancing over at her in the truck, I saw her eyes glaze over and she stared ahead of her like a zombie. Her anxiety is up sky-high I thought to myself. Asking her if she had any Skullcap herb, I told her to take a couple capsules to calm her nervous system.

I asked Michaela if she had any questions before she enters the building. She was nervous that she would not be able to keep up with note taking without an E.A. to assist her. All she would need is a scribe really. I told her to do the best that she can and to speak with the Chef if she thinks this will be a problem for the future.

It is after all, the first day only. She agreed.

This will be very interesting for us. Michaela excels when it comes to visual learning like most Autistics and can learn very quickly just by “doing.” When she was in grade twelve, she had her last, updated Psych-Educational Report done. This report is beneficial in determining what kind of services Michaela will need when it comes to adult services and post-secondary educational. Academically, Michaela tested below average at 75%. Her math was well below average at around a score of 68%.

So this will be interesting. My plans?

1. Review the concepts taught that day.
2. Giving clarification where needed
3. Planning and organizational support for assignments and homework
4. Review of study skills for exam preparation
5. Asking Chef for a separate setting and extra time to be given during exams

The fun has just begun.

Autism: Documentaton

One of the most frustrating things I have to deal with at work is being the only one who documents. Document what you may ask? Negative behaviours, odd behaviours, and new behaviours. We use an ABC chart to do this. A: What was the antecedent before the behaviour occurred? B: What was the behaviour that manifested as a result and C: The consequence for the behaviour that occurred. Outside of using the ABC chart, we are also required to utilize what’s known as an Incident Report when negative behaviour occurs that involve physical contact: slapping, hitting, punching, pinching, kicking, spitting and the like. So many of my colleagues choose to opt out of filling out incident reports. Many Educational Assistants or Specialized Assistants feel that they are doing their student(s) a disservice by documenting. Or getting them in unnecessary trouble. Many parents refuse to document their child’s behaviours because they fear their child will become “labelled” or they fear that the government will label them abusive in some way.

I cannot stress enough how this approach can hurt their students/children. Without documentation, the individual who displays challenges does not get the free services and funding they would so desperately benefit from. The earlier your child or student receives support, the more success that individual will have. I know this to be a fact. I knew at six months of age there was something wrong with my daughter. Despite my inquiries, my family and some of my friends thought “I was making my daughter a special needs case.” The stress they caused me was overwhelming. I knew, early intervention was everything. I made the necessary doctor appointments, spoke to her pre-school teachers and talked with those who worked with her (dance teacher, Sparks leaders, etc.). I documented every single odd, repetitive, negative and even violent behaviour my daughter manifested. Times were crazy and stressful then. The documentation I provided to her doctors were worth their weight in gold. They could see I was being very proactive and was putting my daughter’s wellbeing first before everything. Because of this, my documentation made their work a bit easier- they in turn, worked extremely hard to find solutions and answers for us.

Due to the documentation, the hospital soon figured out that my daughter was Asperger’s, ADHD, had a mixed expressive/receptive language disorder, an anxiety disorder and had other developmental disabilities with a delay of two years. People were horrified that I was elated that my daughter was given the labels. Why? Because now I know what I’m working with. Not being one to bury my head in the sand and pretend that my daughter was normal or typical, I went straight to work. I decided that it was important to follow my daughter’s development so I attained my ECE certification and later my S.E.A. Certification, my POPARD/Autism training, worked at POPARD for a while, and much, much more. I wanted to get on top of things so my daughter could cope better with life, with people and learn how to self-regulate herself. As a parent, I’m not saying you have to do the same. But I’m suggesting that you read. Read a lot! NO ONE knows your child better than the parents. With this in mind, you stand a very good chance of helping your child to be successful in school, home and later in life.

The most frustrating thing I come across, is meeting parents who pretend that nothing is wrong with their little Johnny. When clearly? Its farther from the truth. Parents need to understand that by “making” their child “normal,” they are creating incredible stress, anxiety, and pain for their child. Is this thinking selfish on behalf of the parent(s)? Perhaps. I will use my own experiences as an example of what success looks like. I literally have books filled with written notes that I have made over the last 19 years. I wrote down every single thing I found odd, wrote down all the self-inflicted behaviours my daughter did and more. Making a very long story short, all the documentation and labels helped me to better serve Michaela. I had access to all the services and professionals she needed. I realized that she’s Autistic. Not stupid. She just see’s and perceives her world differently. She just wants to be accepted and included in life. She came out of high school with a 13 year completion certification only. She later enrolled in a University program for individuals with cognitive/neurological/physical disabilities. There, they taught her life-skills and gave her work experience and more. She is now at a grade 8 math level, attained her Food Safe certification unmodified, has her WHIMIS certification unmodified, attained her First Aid certification unmodified and she starts her Culinary Arts University program tomorrow. UNMODIFIED. Because she has labels, she is eligible to apply for grants to pay for her education, books, and more. I or Michaela have not had to pay a dime.

How does one define success? Does the Autistic individual HAVE TO BE a doctor? A lawyer? A surgeon? Not in my opinion. As long as my daughter can tell the time, read, do basic math, know how to use a calculator, knows street smarts, and knows how to ask for help and more? When she finishes her training in the Culinary Arts Program and if she passes? She will be a certified professional cook. In the end, she will be INDEPENDENT. To me, that is SUCCESS. But I will not lie, it is hard work. You have to constantly be the one hollering the loudest in order to get people to actually hear you. It can be frustrating.

So my fellow colleagues and parents. DOCUMENT, DOCUMENT, DOCUMENT. Focus on the small goals at first and don’t give up on the big ones. Follow your child/students lead and give them time. Work on your childs/student’s self-esteem and confidence. Tell them that it won’t be easy but it will be worth it in the end. My daughter’s self-esteem and confidence has exploded in the last two years. She no longer let’s others demean her. She understands her own power and strengths and is working it. Just because she thinks and see’s life differently, it doesn’t mean that it’s wrong! Presently, my daughter has a new mantra: “WHO SAYS I WANT OR HAVE TO FIT IN????” When someone gives her attitude and says to her “what’s the matter with you, are you stupid?” She now hammers them back with a mini educational class about Autism and what Autistic people are like. I have literally witnessed her making people look and feel two inches high after she’s done with them. There is nothing more rewarding as a parent, teacher or E.A., to see the struggle and later success for a person with an intellectual or developmental disability. It’s to be admired really when you think all the opposition they have had to face only in the end, not to let it control or beat them down. Once they realize that they have rights in this world and that they should never abuse it, they can do wonders. I have personally seen Autistic people come up with the damndest solutions towards creative projects and challenges. Just look at what Temple Grandin has achieved. My daughter idolizes her.

But parents. Don’t look at documenting as a negative. In the end, you will see the success but you do have to be proactive. And patient. Always and never give up. Approach your child holistically- become a walking encyclopedia on their challenges and think of them, put yourself in their shoes. Focus on their talents. Be creative in their learning. Your child should be celebrating their uniqueness and successes later in life.

P.S. I realize that everyone’s situation is different.  Go with what you know!

Autism: Communication Books

Does your child’s resource room send home a communication book? If not, they should. It is the parents right to know what’s going on during their child’s day. If a teacher has any reservations about doing so, I would go to administration (principal, vice-principal) and request that one be sent home. It is your right. Depending on how the resource program is structured, it is vital that communication is present. Parents who are true advocates and who are working as part of their child’s professional team in their child’s education? Will most likely see huge benefits and positive results. Remember, these changes take time for Autistic individuals but they can happen. Routine, consistency is the key. I have more than not, witnessed one way communication where the S.E.A’s and teachers are the only one writing in the communication book to home, but the parent(s) do not reciprocate. Parents!! It is vital that we know of any important details of your child’s day at home in order to make the school experience successful. The purpose of this communication book is not to trap parents negatively. Many parents are always worried that we are looking for signs of abuse. It couldn’t be farther from the truth! Any trained S.E.A/Resource Teacher in Autism, understand the possible negative behaviours that occur at home. We understand what a melt-down is, how smart these kids can be at manipulating (they are kids after all!), what sensory over-load is, and so on. I want you to know that we understand what your family is going through. I’ve seen parents divorcing and families being broken up over their Autistic children. I want parents to know that most of us, are here for you. Parents do not have to write a diary entry every day (unless you want to!!)

The things that S.E.A’s/Teacher’s need to know is as follows:

1. How did the night before school go? Any sleep issues? Run out of meds? Did they not eat dinner? Any sensory or new sensory issues? Did the homework not get done for any particular reason? Any behaviour concerns? And so on.
2. The morning of school – Did they not eat breakfast? Are they tired? In a bad mood? Perseverating on something in particular that happened at home or school? If the student is a female? Did they get their period? It is wonderful for us to know the week before they are due for their period so we can prepare for the PMS symptoms so we can reduce any stress for the student. How much homework if sent home got done? What needs further work on? And so on.
3. And in return, S.E.A’/Teachers will write back home:

1. Any special events that occurred at school
2. What their child worked on at school (academics, life-skills, work experience, etc.)
3. If their child’s behaviour was triggered by something in particular
4. Any medical/safety issues
5. And so on.

Unless the program is unique, I would be highly suspicious if a teacher never created any communication books to be sent to and from home. I once worked for a teacher who purposely did not create any communication books. Because all she did all day is talk with the staff and surf the web on her laptop/phone. THEY NEVER DID ANYTHING IN THE RESOURCE ROOM! My daughter’s high school teacher refused to create them too. I was outraged and raised holy hell over it. A TRULY CHILD-CENTRED PROGRAM, will ensure that all the students and the program itself is flowing and is HOLISTIC.

Enclosed is an example of what communication page looks like. Anyone is free to copy and print it!

Again…..ADVOCATE!!

 

 

Some Things are Just Not Meant To Be.

Well. So much for going to University.  I went to two Universities to enquire about getting my degree as a Special Education Teacher.  The unfortunate part is, there is no such thing as a Special Ed. degree by itself.  I must Major in an academic and Minor in something else.  4 years.  Then I have to do an additional 2 years in special education.  That makes 6 years of school.  Not possible for me.  I asked the Academic Advisor “why” is there not a separate program for those who wish to teach Special Ed. only?

WHY must I have to a learn high school academic when I know I wont teach it?  In special education, the focus is always on “Functional Academics and life-skills.” And yet, teachers who have not done their special education training but teach in a Resource Room, have NO IDEA what Functional Academics is???? After stating my opinions, the academic advisor shook his head and said to me “Michelle, I don’t know why they don’t have a course like this- it is definitely needed.  But its all about the money.”

Disgusted, I walked out.  If only people with disabilities and their families who truly comprehend the negativity of this sad fact rise up and advocate for their kids human rights.  If parents really knew what goes on in many of these classes, they would be outraged.  It’s a rare thing to work for and be in a class with a trained teacher in special education.  I for one am tired of working with teachers who in frustration end up in tears due to a lack of knowledge and expect me to pick up the pieces.

Money over quality education.  Money over these students confidence and self-esteem.

It’s disgusting.

 

Autism: After High School

I apologize to my readers for being so disengaged from my writing. I had to. I’ve been so exhausted the last few years. As any parent of a child with a neurological disability knows, our kids will either make, or break us. I am happy to report that I am alive and well *chuckle*. So far. My daughter Michaela is now twenty-one. She successfully graduated from high school and even volunteered to do a thirteenth year (totally optional) to pick up important courses to help her when she goes to University/College. It’s been a long time since I wrote, so let me review my daughter’s labels: she has Asperger’s Syndrome, ADHD, a mixed receptive-expressive language disorder, an anxiety disorder and “other developmental disabilities.”

She left school with a reading level of grade seven. Her math level was at a grade six level. She never did learn any science or much of any other academic. She excelled in art, graphic arts, and physical education. At home, she excelled in Equestrian riding (for eleven years I might add). She also participated in an inclusive art exhibition here in Vancouver too. After high school she had to wait approximately a year to enroll in a special program at a University near us, aimed at teaching anyone with a cognitive/physical disability who wished or is able to learn, life skills how to find & keep jobs and complete four different work experience programs. She excelled and blossomed in this program. Here she saw the professor treat all students like human beings. The professor took her time with each student to make sure they always had a say when it came to “what they want to be when they grow up.” And so on.

Last May, this university was fighting to keep this program alive. This program was in three different universities until they were closed down in two universities but kept alive in one. The professor upon her request, asked for a meeting to convince the universities administration to keep and open more special needs programs. She was allowed to speak to the board of the University at one of their monthly meetings. She asked my daughter to speak along with her. Michaela has always melted down whenever she had to speak in front of a group. This time she shocked me: excited, she said YES. I had always taught her how important it is to teach others about disabilities, especially autism. TO BE PROACTIVE!   She was listening! Where once she cowered in fear whenever any adult or child bullied her. If she had to speak out for herself (which she didn’t), it took me years to educate her how valuable she and other autistic individuals really are to others and the world. That she is NOT stupid, she just views and perceives her world differently! Michaela understands now, how really important education is- not just for her, but for everyone else around her.

So the professor had only ten minutes to present. Caela had five. I was asked to come along in case Michaela experienced any difficulties or severe anxieties. What I witnessed……made me want to stand up in front of that crowd and say, “Do you see? Do you see?? What the right education can do positively for a person who has challenges!!??” Michaela stood up and said her piece in front of the mayor of the city, the Member of Parliament of the city, the President of the University along with his two vice-presidents and thirty other important people. Michaela’s last statement was this:

“You must. You must……protect and develop this program for people with intellectual and physical disabilities!! ESPECIALLY for Autistics. You know why? YOU’RE GOING TO HAVE TO DEAL WITH US EVENTUALLY, BECAUSE WE’RE NOT GOING AWAY!”

Michaela nailed it. Everyone was shocked at her advocacy. They were suprised that she wanted to continue learning- upgrade some of her academics and eventually enroll in the Culinary Arts Program to become a Chef/Cook. She had impressed the MP of the city so much so, that he came right up to her and shook her hand, telling her how impressed he was with her speech. She received many congratulations that afternoon. Michaela’s last work experience was at the University itself in the Culinary Arts Program. This is not the norm in the program- all students are mostly “sent out” of the University to complete their four-week work experience.

Michaela shocked everyone within the Culinary Arts Program. The chef/teacher was highly impressed with her knowledge & confidence of the kitchen. When my daughter asked him as to how she was doing, he was abrupt: he told her he wants her in his program. He told her that he is impressed of her guiding others in the class whenever any of them needed any help. In the last week of her work experience training in the kitchen, Chef had asked my daughter to make something for him- anything. Caela took the request as a challenge and came home on a mission. She wanted to make something they’ve never had. Finnish food. So she came home went through my Finnish cookbook and decided to make bread. Not just any bread, but a sweet, coffee bread. We call it “Pulla.” So she went to school the next day and made four loaves. One for the students in the class, one for their little café to sell, one for the chef and one for home. Michaela tells me that the class had eaten the whole loaf within minutes. All the bread in the café was sold and in essence, her culinary baking project was a hit. Chef then gave Michaela a book on Kitchen Math to study over the summer to prepare for when she gets in the program. A big hint for Caela that she should enroll in the program and not give up. She was elated to be given a hundred dollar textbook for free and a promise that he would work hard to get her in the program. Her disability be damned. We were thrilled!!

She was in the kitchen doing her work experience at almost the same time she was invited to make her speech to the universities administration. After she gave her kick-ass speech, she coyly told her audience that she along with the other students in the kitchen prepared the Asian Indian lunch that day for them. She then said “please enjoy the naan bread that I cooked!” This was a huge surprise to them and to the esteemed South Asian exchange student who after her speech, told her he was more than looking forward to it!! Everyone just looked at each other surprised. I couldn’t help but shake my head in disappointment for their lack of knowledge regarding Autistic people.

It was the proudest day of my life.

My autistic daughter is fighting for her successes in life despite the odds and challenges. Temple Grandin has always been an inspiration for her and Caela wants to take up Temples fight to educate others and to be pro-active. We are just beginning. Just two days ago, Michaela and I visited the university to enquire about funding options and to get that in motion. The woman at the desk told Michaela she had “good news”. Michaela was formally accepted into the Culinary Arts Program and is now on the class list!!! We were told that Michaela would most likely go on the list next year! My daughter was extremely pleased but I was ecstatic! I kinda made a bit of a scene actually. At least the receptionist thought I was funny!

Parents. If you have a HFA, PDD/NOS, or Asperger’s child, do not THINK FOR A MOMENT that your child cannot make it. You know your child the very best- their strengths, weaknesses, and challenges. You most likely know their hopes, fears and dreams. This may not manifest fully until they are 15+. But work on this, shape it. Their passions and strengths may be the only thing that make them successful in life in order to avoid a life of poverty, struggle or homelessness. I knew my daughter had a talent in horses at eight years of age. I sat back, worked on her self-esteem and confidence and just observed. She was still young yet. She struggled throughout elementary/high school, trying to make sense of it all with teachers who “were gonna make them NOT autistic” or just simply just sat around with them in class doing virtually nothing. Like what the hell, “they’ll never amount to anything in life anyways!” (My daughter overheard this statement in class once).

Tell your students, your children not to give up. Ever. Teach them how to fight appropriately. They are not stupid. They are simply striving to make sense of the world, where people are constantly re-defining the meaning of what’s NORMAL. There is no normal, only uniqueness. Tell them to advocate to their teachers and to others respectfully when they are having social or difficulties. Let them know they have a voice- and to NOT be ashamed when they have to listen to their inner voice, to ask for advice, to use judgement and logic when making decisions. These children come to us to teach us lessons. To help others. To help us along our journey in life and to embrace compassion and empathy for others who struggle as well.

They DO NOT come to us to make us feel that there is something wrong with us. We are not responsible for bringing into the world a defective child with Autism!!! The responsible thing to do, is to embrace and to look forward to the hidden lessons these children came to teach us. What have you learned whilst raising a child with special needs? Are you a better or worse parent since your child came into the world? I tell my daughter all the time: “your soul picked me. Not the other way around.” I have not been cursed bringing a child like this into the world. It is tough. Stressful. Isolating, but it has also been incredibly rewarding.

But I’ve learned to be tough. Mentally and physically. I have more compassion and empathy for others. I have developed more patience and understanding. I have learned to use my voice. I have learned to develop tolerance towards self-centred, arrogant people. I have learned to be more authentic and more.

And it shows. I have given up a very good career as a dental assistant to become a trained ECE Educator and Special Ed. Assistant in autism. I have learned to turn the other check in this incredibly thankless & incredible stressful career because I fall in love with the soul of every child/student that I work with. I love it when their eyes light up when they have just finally figured out how to respond to a social difficulty or trusts me when sometimes I say, “just memorize it” the answer will come later, or when a problem is solved for them after years of trying to figure it out, or when they find their own confidence because they know that I believe in them and have their back. And so much more. Almost every day I go home with a smile on my face due to some minor or major success seen, or unseen by them but observed by me, telling me I did my job well. Administration be damned. I don’t want to talk about them, the very thought of them upsets me.

My daughter and I have succeeded through many obstacles and barriers. And it’s only the beginning.

It is time that Autistic people find their place in the world. Apples and bananas. We’re all in the end, in the same basket!

 

Autism- Student to Adult Transitions, pt. 1

Greetings!

I have soooo missed writing. My year has been plagued with one challenge after another.  I cheerfully confess that not only did I survive?  I kicked ass, quite frankly. My autistic journey is far from over however.  My daughter Michaela is now eighteen years old and has graduated from high school.  She will return next year to complete her thirteenth year and pick up extra courses.  I always make the attempt to take the Buddhist perspective on life.  However, humbleness be damned at this very moment…. I did a *f…reakin* good job raising that girl! (LoL). Everyone who stumbles upon Michaela’s path loves her.  Michaela is kind and gentle. She is feisty, strong and passionate. Michaela has become such an amazing advocate for Asperger/autistic individuals and all individuals with an intellectual or physical disability.  She has learnt how important it is to form a thick skin and to forgive others who are clearly ignorant and illogical towards her and people like her.  Michaela has effectively learned……how to have a “cultured, elegant, opinionated, open-mind”.  She is fighting the system within school (later the world) and is teaching her peers along with her teachers, how to approach life with like-mind.  Michaela and I talk constantly- that just because she has cognitive-neurological challenges, she is not to be taken for granted of by others.  She is her own person and with the correct assistance to help fine-tune her challenges, her persepective taking on the world has much to teach others.  I am proud to see that she comprehends. She constantly supports others like her, helping them to see the strength and courage within themselves and to take charge with the same passionate elegance  that she has.

A comment made by her resource teacher in her high school annual this year:

“Congrats.  Its been great watching you grow up. You’ve bruised me, make me laugh, and most of all, proud. Good Luck and all the Best.”

“Bruised?” Oh yeah- Mommy was tickled pink to see that!  Not that I wanted to raise an uncultured, unmannerly child though.  I wanted her teacher to “see” that there is more to an Autistic individual if only they would take the time to peel the layers off with tender and intelligent hands.  The teachers “bruised” comment told me immediately that he is learning.  Always remember, depending on where you live, Resource Teachers do not necessarily have the Special Ed. training that they should have. They, like their special ed. students need to be taught with the same tender and intelligent hands!

And this,  makes me *smile* big-time.

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!

Asperger’s Syndrome, My Daughter and High School

If there is one thing I am deeply grateful for this school year, it is that Michaela absolutely adores going to high school. When I ask her to tell me one thing she loves most about high school, her answer is instantaneous: “I love my new independence.” And I in turn, immediately think- Whoah. This is both awesome to hear and yet, very scary. She now wants to do too much, too soon. One thing about her being an Aspie individual, is that she has a very innate, strong sense of self. She knows exactly who she is and what she wants in life. It doesn’t help that it is typical of these individuals to think like an adult and feel like they are one. Being an only child I’m sure, doesn’t help matters either. There is now a lot of conflict when placing limits. It’s a shock I’m sure, leaving the rigid, routine schedules of primary school and to be thrust into the busy high school environment and into new levels of independence.

Despite that she adores high school, she has become incredibly frustrated to the point that her anger and frustrations have manifested into regular, routine anxiety attacks. Again, this is typical for those who have autism and Asperger’s syndrome. Those who have educated themselves regarding the world of “autistics” (Dr. Temple Grandin’s term) know most of this. Recently, I have been mentally greedy if I can term it that way, reading anything I can get my hands on regarding this unique form of autism. Asperger’s syndrome is not only unique, but its quite complex.

If you know someone, or have someone in your family with the label of Asperger’s and have not read Dr. Tony Attwoods book, “The Complete Guide to Asperger’s Syndrome,” I encourage you strongly to find the book and read it. I have re-read this book recently and I have to admit that it has become the main vein of support between my daughter and I. The once beautiful hardcover book that I have in my possession, is now scarred up with long, penned, underscores!

Right now, I am re-reading Dr. Temple Grandin’s book, “Thinking in Pictures.” The woman is also one of my gurus who provides a wealth of intimate knowledge of what it means to be an “autistic.” Boy. Did she help me out yesterday regarding Michaela’s recent and severe anxiety attacks. But I’ll talk about that in a bit. I have had to re-read these books before I continue on to other books as there is just so much information to absorb. As my daughter grows within her world, so I have been. I encourage those who have already read or will read, these books to keep referring to them often. You will find as I have, that these particular books will continue to reveal pertinent information as both you progress through your journeys.

I have mentioned it here on previous blog enteries, how Michaela has increasingly become more aware of her challenges and how different she is from the outside world. This awareness has now taken on a higher level. Michaela is currently enrolled into a program called, “School Quest.” All of her work is completely modified as she has never been in a regular or in an adapted program. This School Quest program, teaches and supports independence and later promotes work experience. In high school, she has four blocks of courses: two are in her resource room and two are elective courses. In her resource room, she joins other children with the same neurological challenges. Male students with Asperger’s figure more predominant in this class (no surprise).

My daughter has observed that even though many of these males students share the same disorder as herself, she watches them complete their work without any adaptations or modifications. “But” due sensory/social/communication impairments, they return to the resource room for assistance. One of the things that have increased, is Caela’s main insecurities about being unable to spell, write, do cursive handwriting or type on the computer. She finds it hard to understand that, if her Aspie friends can do these things, “why” cant she?

Reading Temple Grandin’s book, “Thinking In Pictures,” has caused me to reflect and compare. Here is a woman with “Kanners autism and later Asperger’s Syndrome” who has risen to such great heights despite the incredibly difficult obstacles. She was fortunate to have some amazing, strong and intelligent women in her family to nurture and support her. Looking at her now? Temple has a degree in psychology, a Ph.D in animal science, and has designed one-third of all the livestock handling facilities in the US. She travels all over the world, lectures, and has written many books regarding autism and how to understand animals. Then I think of Bill Gates and Einstein and what they accomplished. Then I think of the students I support at school. Most are also Aspie individuals who possess many wonderful talents and who have potential for great success later in their lives (despite the overwhelming social, sensory and communication challenges that they face daily).

And then I myself as a mother, become angry and resentful. I feel like my daughter has been ripped off.

Dr. Temple Grandin has made the comment in her book, Thinking In Pictures:

“There is great concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out

.”Temple goes on to say:

“A little bit of autism genetics may provide an advantage though too much creates a low-functioning, nonverbal individual. The development of genetic tests for autism will be extremely controversial.”

I read the above and my heart sinks. I think of Michaela. She too, has been diagnosed as an Asperger’s individual but has another label that robs her from her gift or gifts of being a true Aspie. This overlying label of her having “other developmental disabilities” puts her in a different category. But having other overlapping labels is not uncommon with autistic individuals. An example that Dr. Attwood provided, is a person with autism could also have; ADHD, Tourette’s disorder, and OCD (obsessive compulsive disorder). Dr. Attwood refers them as “clusters (of labels).” Regarding this, he recommends that the child or adult would need treatment for all four disorders in order to fully help the individual.

Dr. Attwood has made mention in his book: “The Complete Guide To Asperger’s Syndrome that:

“The simplest way to understand Asperger’s syndrome is to think of it as describing someone who perceives and thinks about the world differently to other people.” Some of the children he observed “had specific talents that could lead to successful employment and some could develop life-long relationships.”In my opinion, if your child is an Aspie individual, follow Dr. Attwood’s advice. Its common sense. Have all of your child’s disorders treated individually. Celebrate the uniqueness that makes your little Tommy, “Tommy or Mary, Mary.” Mould your child into something great and wonderful and unique. Don’t attempt to change him or her into someone they weren’t meant to be. No one could ever change my mind in thinking that these unique souls intentionally chose to come back down here on this plane to become Asperger individuals. I believe that they have come here to teach us so many things and to bless the world with their uniqueness. Their potential gifts to the world ultimately and heavily rely upon us: the parents. Most parents of Aspie or autistic individuals unfortunately do not recognize the trust (and later the blessings) that the Universe has bestowed to us due to all the stresses that we face.

Your child could possibly become another genius that could change the world in some way. How can you, the parent- coax and nurture this gift out of him or her? The Universe does “not” dole out what it thinks that you cannot handle. What hidden gifts does the Universe know that you possess that you have yet to discover as a parent so you assist your Asperger’s child? Alchemy is about the power to transform. So. Transform the lead (the curse of autism) into gold.

What in the world has brought me to think of all this you wonder? Two things.

One: Because I see. I see everyday here at home and years at work the distinctiveness that is called the autistic mind. These individuals are both neat and quirky. They are the most incredibly honest, smart, sincere, studious, and loving people I know. One of the IEP goals for one of the students I work with now, is to learn about appropriate and inappropriate touching (he wants to hug and squeeze everyone he sees). One day as we walked down the school hallway on our way to his History class, my student suddenly whipped his arm out to grab me for a side-hug. Upon telling him that it was more appropriate to ask me first if I want a hug , I quickly wiggled out of his grasp. He looked me right in the eye and stammered: “I know C‘hele- but, but….I just wanted to tell you that I had a really good day today and that I love you!” Moments like these make me want to completely melt.

Two: I observe and consider my own Aspie daughter. She has the many typical, overlapping disorders. One in particular, is a not so common disorder of anoxia (lack of oxygen) that occurred during birth. This, cannot be fixed with any known treatment or medications. Its permanent and it over-rides all of her other disorders outside of her main Asperger’s diagnoses. Even though my child has many talents (and they’re not academic), I am not sure at this point if I can channel her talents or strength into any significant career. What, I question, will become of her later in life?

I am realistic to accept that she will struggle with these life-long challenges. But to have a neurological (autistic) disability along with additional, minor brain damage? My work is more than cut out for me (and for Michaela). So my message to the readers who can relate is: be grateful if your child has Aspergers with other overlying challenges that can at least be treated. Yes, the work is hard and the road is long, but in my eyes it would be well-worth all the suffering if your child is at least able to earn a degree and a worthwhile career. Dr. Temple Grandin is very open and honest about her therapy and medications and how she has a better quality of life because of them. But I have to admit- your child will most likely have a better chance for success than my daughter will. The optimistic side of me still wants to defy the obvious that has been diagnosed down on paper and I hope that one day, she will at least evolve enough so that she will be able to live independently.

So. That means that Michaela will never become a brain surgeon, a lawyer, a Bill Gates, an Einstein, a brilliant scientist, inventor or actor. When I first discovered many years ago when Michaela was young, how many Asperger individuals “can” succeed to these highly successful levels, I was elated with hope. I have to be honest and say that realistically, I really didn’t expect Michaela to be any of these. But any hope I might of had of her going to university and having a career, was diminished a long time ago. Unfortunately, Michaela was not meant to follow this kind of path.

Right now, all I can hope for is that Michaela will be able to hold down a decent job, remember to pay her bills, know how to save money and how to live alone and be safe and not let others take advantage of her. Basic life-skills and organization skills is the necessity here.

Getting back to Michaela’s anxiety attacks.

This past week, Michaela has been experiencing quite severe chest pains. Having a very emotional nature (I admit, its inherited from mother), she has been having difficulties pin-pointing to any potential causes. After having discussed the situation, we calmly changed the subject. Michaela had been working on some homework that is due after the weekend. When I went over to look at what she was doing, she freaked. She was completing a hand printed final copy of an essay. When I looked over at her rough copy and looked at the final copy, I couldn’t tell the difference between the two. Both copies were an absolute mess. I guess I stood there for too long, silently looking back and forth between the two papers attempting to figure this out. Michaela then freaked with embarrassment. In the midst of her melt-down, she explained how agonizing it is for her to print, write or spell. With tears rolling down her face, she related how she has been watching both the kids in her resource room and in her elective courses. She was frustrated, angry and embarrassed that the other autistic kids were able to accomplish these tasks but she could not.

“Why mom? Why cant I do these things? I try so hard to practise so I can keep up with the others. Why does my brain do this to me? I am stupid and I’m depressed. Even the other autistic kids are smarter than me!”

My heart was breaking. I told her about Temple Grandin and the challenges that she faced when she was young and the challenges she still faces now. I was pleased that she was willing to listen.

I told her:

“You are unique, you see things differently than other people. But not everyone sees the world the same. Your brain works perfectly fine, it just operates differently than other people‘s. There are some things that you can do that others cannot and likewise; other people will be able to do things that you cannot. There is no such thing as “the perfect person.“ The most important thing to remember is, don’t be ashamed to ask for help. Tell people that you do not understand. It is better to tell others this and not be ashamed, than not telling others that you really do need help or you don’t understand only to walk away resentful of others and of life. Those feelings of anger will only end up harming you in the end. Be proud of who you are- you have so much to share with others. Later in life, some people might be jealous of you, refuse to let them discourage you or tell you what to do. Seek someone you trust, talk to them and get their advice if you need to.”

We talked more about this of course, but this was pretty much the jest of the conversation. I thought hard for a long time. What could I do or what could be done to help my daughter to cope with her academic challenges? Some ideas came to me. Then I considered her panic attacks- what else could I do outside of giving her medication or a herbal remedy to help calm her nervous system? And then a light bulb went off in my head. I remembered reading something in Temple Grandins book, “Thinking In Pictures.” Temple discussed the challenges of coping with her own fear-based, severe panic attacks and the need for deep pressure. She found that if she experienced deep pressure at the sides of her body, head, and neck during a panic attack, they would go away leaving her calm and serene. I wanted to try this and see if deep pressure would help Michaela. The opportunity arose when yesterday afternoon, Michaela was again experiencing pain in the centre of her chest. I asked her permission to try something that I read in Temple Grandin’s book and she was o.k. with it. I went and stood behind her, wrapped my arms around her upper torso and squeezed hard- but not hard enough to hurt her. I asked her if that made her feel any better. Immediately she responded “Yes! Do it again!!” After about ten minutes, her chest pains started to slowly subside.

Wow, I thought. I cant believe it worked. I was immediately grateful for Temple Grandin for divulging this experience of hers. Temple went on to develop “a squeeze machine” and she uses it when she is in sensory over-load. I told Michaela this and it helped her to understand that she is indeed “not alone.”

I thought it was important in Michaela’s primary years to be exposed more to her typical peers instead of being holed up in a resource room. And I was right. Now, I find that the reverse is needed: Michaela needs to be exposed to other teenagers like herself so she can understand that she is not the only one experiencing these frustrations and anxieties. I will be searching for group therapy in a natural setting that specializes with these issues for Michaela soon.

And thus, the saga continues.

Autism, Adolescence and High School

My daughter turned thirteen this past July. She is currently undergoing a massive transition in her life: she will be entering grade eight and high school. The municipality which we live in, underwent a large change a few years ago- it removed middle schools (grades eight to ten). That obviously means that Michaela will be going to the same high school for the next four years and she has turned into a basket case about this. In all honesty, I have too. In all fairness, I am relieved as it means that we would not have to otherwise prepare for two transitions (primary to middle school and middle school to secondary school). The month of September is going to be pure hell not to mention a write-off. For those who don’t know, my daughter is diagnosed with Autism/Asperger’s Syndrome, an anxiety disorder, ADHD, and additional developmental disabilities due to anoxia damage at birth. All of her educational life, Michaela has not known a full-time regular classroom. Michaela has always been integrated in a regular classroom for 1-2 hours the most and has otherwise been in a resource room. Michaela has always been bussed to and from school. Michaela has always had an educational assistant by her side.

This summer, I have had talks with the Special Needs Coordinator of the municipality and she had informed me that Michaela will no longer be bussed to and from school. She will now have to walk. This is impossible I told her. Now that we have moved, high school is a few miles away from us. The school I originally wanted Caela to attend, would have been only a few blocks away but the program is unsuitable for her as it’s a completely modified program for lower cognitively challenged students. So, the co-ordinator tells me that Michaela will have to take REGULAR TRANSIT to and from school. Then she makes me feel bad that I have not been TEACHING HER! You cannot imagine my outrage. The very idea of Caela taking regular transit made me and still makes me ill. Then she tells me THAT ITS TIME that I hire a life-skills worker to work with Caela on this in order to prepare her for next year. Yeah. It would have been nice at least to have a little forewarning regarding this matter. Also its not what she is telling me, its “how” she’s telling me this information. You know, it shouldn’t be a problem since autistic kids learn NEW ROUTINES so quickly not to mention easily (major sarcasm here). I was fortunate to secure the bus for this year only. I had to strongly insist on it. As the old saying goes, the parent who hollers the loudest, gets results first.

The next blow: Michaela will now not be having any additional support in school with an educational assistant due to 66 EA layoffs in the district. Michaela has not known education without the support of an educational assistant. She needs the support.

This particular program that Michaela is now enrolled in, is a career preparation program. Its not a fully modified program however, they‘re going to have to do it for her. A lot of good this program will be- as Michaela suffers enormously from impulsivity issues and has very poor organizational skills.

I’ve been recently informed that the B.C. government has raised the IQ level to 70. This means many special needs individuals will be denied government assistance when they finish high school. The outrage I feel is enormous. The government is well aware that high functioning autistic individuals can be brilliant and intelligent but they are enormously challenged when it comes to life and organizational skills. Without the necessary support, most fail miserably in this department and so many end up on the streets, hooked on drugs and or alcohol.

See below this post for the link to the story regarding the BC government changing the IQ level for special needs individuals.

Currently, my daughter sits just under the 70 IQ percentile. She was just re-assessed before the end of this past June and her psychologist could not stress enough how important it is, to make sure that Michaela be re-tested again before she leaves high school. The psychologist warned me that it is possible that if the government refuses to lower IQ level, Michaela will most likely be denied receiving her disability pension cheque when she becomes 19. I cannot emphasize enough, how important this disability cheque will be to my daughter when she becomes an adult.

My daughter will most likely receive the necessary training at high school that will prepare her for employment. Most individuals who receive this training, hold only part-time employment as most are unable to secure full time due to their cognitive challenges. The additional disability pension assists with paying the bills. Like so many others who suffer from cognitive or neurological challenges, Michaela will not be able to keep full time employment due to her short term memory issues, distractibility, impulsivity issues and poor organizational skills. Unless by some miracle she is able to retrain her mind. Due to her “so-called high IQ” she is now deemed intelligent enough to support herself and live on her own independently. What the government conveniently ignores is that there are many forms of intelligence. Academics is just one of them. What about the other intelligences?

I have to admit, despite all these challenges, it will be interesting to see how Michaela will cope or do when thrust out there on her own in high school. As much I hate to promote this tough love stance, the documented paperwork will be invaluable and in the long run and it will assist her when she becomes an adult.

It will kill me as a parent, to let my special needs child to be put in this position in order to help her in the future. On the other hand, it is important to allow these children opportunities to prove themselves.  Despite all my training and experience I too, need to remind myself of this fact.

I will be for sure, sharing her pain and anxiety for the next long while. Here is the website I wrote about:

 

 

 http://www.canada.com/vancouversun/news/westcoastnews/story.html?id=834f0a78-0de3-488a-a3b7-5b01fe8d20c7

I’ve been having difficulties with this computer and the above link.  Should you not be able to access this link, you can view the article on the Autism Community Training Website  http://www.actcommunity.net/.  The article is on the right hand side of the page.