Tag Archives: advocacy

“Telling Your Story with a Purpose”

It has been awhile since I wrote. I am a single mom working three jobs and home schooling my two children at the same time.  I have just been a wee bit busy lately.  Now that the end of school rush is over and summer break is upon us, I am down to working one job and teaching only one home school summer course. This leaves me with enough time and energy to devote to writing again.   

I started writing a blog on Tumblr back in September 2012. I was just beginning to find my “voice” back then and was encouraged by a fellow teacher and parent to start writing in a more public venue. It took a lot of encouragement by my friend, but eventually Geeky Science Mom’s Tumblr was born.  I didn’t really have a focus of the blog in the beginning. 

At that time a Tumblr blogger still needed to know the codes in order to properly format their blogs. I was learning and experimenting and reaching out to people in cyberspace to see how I could help. My Tumblr may have started as a cat, fandom, art, science, parent, and autism information page, but my blogs eventually became longer and longer.  My writing became more focused as well.

I was diagnosed in December 2011 at the age of 36 after both my children were diagnosed. Here we are five and a half years later. During that time I have completed a Master’s degree that started out with a focus in Science Education and ended with a focus in Autism Education.  We moved across the state to start a new life where my children could have access to better opportunities.  My marriage fell apart shortly after.  My ex-husband came back three years later, but it didn’t work out due to his abusive nature.  

For more information about my experience with emotional abuse and how to deal with it:

Invisible Scars – A Tale of Emotional Abuse  (June 9, 2014)

Dealing With Emotional Abuse in Families (May 5, 2016)

So many things have happened in my life in what feels like such a short time. I just turned 42 a couple of weeks ago. I never ever thought that I would be a single mom with two teenagers, homeschooling, and working three jobs just to make ends meet.  I have been a teacher for 19 years. We are on Medicaid, because I am not eligible for medical insurance through my employers due to my part-time standing. We are on food assistance.  My daughter is on SSDI (Social Security Disability Insurance).  We live in a rural community.  The three of us live in a very small two bedroom apartment.  Part of the living room is partitioned off so my son can have a bedroom.  Everything we own is old.  We can’t even afford the luxury of television services, but we have a Wii player that was a Christmas gift that we play Netflix through.

The Aspie Teacher blog was created to tell the story of my family’s journey, but I tell the story through my perspective.  When I tell my story I am coming from a lot of different angles that I have personally experienced.  I don’t just share my story to complain.  Yes, I have experienced a lot of heartache in my life, but the purpose of my blog is not to just complain about the hardships I have experienced. 

I have a personal philosophy. To me, helping one person at a time is worth all the effort I put into my work.  If I can help make one person not feel alone, help one person make their life better, then it is all worth it. I believe in the idea of paying it forward.  I help one person, then that person will go help another, and so on and so forth.

I had a friend help me find my “voice” after a life time of feeling ignored, dismissed, and squashed into a box that I didn’t fit in. I have spent a life time of having to deal with things on my own, crisis after crisis and feeling abandoned and not understood when I reached out for help.

“What I remember most about emotional abuse is that it’s like being put in a box. How you end up in there is the biggest trick – I never managed to work that one out. Maybe you think it’s a treasure box at first: you’re in there because you’re special.

Soon the box starts to shrink. Every time you touch the edges there is an “argument”. So you try to make yourself fit. You curl up, become smaller, quieter, remove the excessive, offensive parts of your personality – you begin to notice lots of these. You eliminate people and interests, change your behaviour. But still the box gets smaller.

You think it’s your fault. The terrible, unforgivable too-muchness of you is to blame. You don’t realise that the box is shrinking, or who is making it smaller. You don’t yet understand that you will never, ever be tiny enough to fit, or silent enough to avoid a row.”

It’s time to make emotional abuse a crime – Lauren Laverne  (via trashysnacks)(via gularasi)

I don’t want others to have to go through what I did. I want to help them find their “voice”.  I want them to feel safe to tell their story if they want to.  I want others to feel that they are being heard and understood, but this requires that the writing have a purpose so you can grab the audience that the writing is intended for.

How does one tell their story with a purpose?

Recently I went to a training that was entitled “Telling Your Story with a Purpose”. A lot of good advice was provided and what was shared reminded how I struggled over the years with disclosing about my disability, my PTSD, and how much should I disclose about my family and personal experiences.  It took me eleven years to finally be able to share all the parts of my medical trauma publicly in one place, which you can find here –The Volcano is Awake.

When I finally was able to publicly share my medical trauma that led to my diagnosis of PTSD, it was such a release. It was finally out there.  Once it was out there I was able to make some very important decisions about my life.  Establishing and maintaining healthy boundaries were absolutely necessary if I was going to be able to make any further progress in my recovery.  The story that first started The Aspie Teacher blog was to jump-start a necessary step in my recovery, but also to let others know about autistic burnout and about trauma bonds. The purpose of my story was not only about helping me. It was to help others as well.   

Telling your story doesn’t have to be in the form of a blog. It could be in poetry, or song, or dance, or in a painting or drawing.  The list goes on.  In June of 2016, my son was finishing up a unit on poetry.  The final assignment was to write two poems in the form of his choice.  He worked very hard on metaphor usage.  His poems told stories and you can find those stories here – An Awakening.

It takes a lot of time and a lot of courage to come out and tell your story. It is not an easy thing to do and it is not for everyone.  Finding your “voice” is also a challenge, but social media platforms are making it easier for people to find a way to express their “voice” and reach out to others who will hear them and connect with the story. 

I follow the three C’s – You have to make a Choice to take a Chance or nothing will ever Change. I made a choice to take a chance with telling my story and things changed for me.  I began to feel more empowered and more sure of myself and my abilities.  Finding my “voice” changed my world for the better. 

Here is a video that I thought fit with the message of this blog – One Small Voice | ASL | Educational Songs | Kids Videos | YouTube for Kids | Jack Hartmann

Here are the lyrics to “One Small Voice”

With just one small voice
Singing out a song
With just one small voice
Singing sweet and strong
One by one they’ll grow
And together sing along
And then soon all the world
Will be singing

With just one small voice
Singing out a song
With just one small voice
Singing sweet and strong
One by one they’ll grow
And together sing along
And then soon all the world
Will be singing

The following lists were put together by the Seattle Children’s Hospital – Center for Children With Special Needs and the Washington State Department of Health

Things to Think About When Telling Your Story in Public

  1. You have some distance and perspective on your experience vs. being in the midst of it or still actively working through it.
  2. The story has benefit for others. It’s not about your personal agenda, frustration, or current issue.
  3. You feel ready to share it. Trust your instincts. Share parts of the experience that you are ready for now – you don’t need to tell it all.
  4. You are relatively comfortable talking about your experience. It’s not at your expense – you don’t feel overly vulnerable, exposed or shamed.

Guidelines for Self-Disclosure When Presenting

  1. Stay with the focus of your message – less is usually more.
  2. Protect the privacy of others.

**Remember – When it is put online, it is online forever. Privacy of others must be protected.

Personal Responsibility, Self-Advocacy, Education, and Support

On November 26th I wrote about Finding Hope. That writing was part of my Wellness Recovery Action Plan (WRAP) that my Peer Support Specialist is helping me put together.  The “hope” portion was only the first part. There are four other concepts to this writing that I needed to figure out what their meaning was to me.  These remaining concepts were easier for me to write about than writing about “hope”, but my writing didn’t turn out like I thought it would.  Instead of separating these last four concepts out, I ended up combining them all in a long narrative. 

It has taken me years to write my story. A bit here and a bit there. So much struggle.  So much pain. When I was first diagnosed with PTSD, it was recommended to me to get my story out to help with my healing process, but I just couldn’t.  This is why it has been so difficult for me to conglomerate every thing that has happened to me.  I made an attempt in June of 2015 to combine everything up to that point when I wrote The Volcano is Awake. I cried writing it.  It reads choppy, but it seems every time I try to write my story that happens.  I am still trying to heal. Healing takes time and how that healing plays out is different for everyone.  My ability to write to the point at which I have is quite an achievement for me, because for so long I couldn’t even do that much. 

In this second part of putting my WRAP together, I was faced with determining what personal responsibility, self-advocacy, education, and support meant to me. As I stated before, I was not expecting my writing of these concepts to turn out like it did. I am not sure what that means, per say, but I think it demonstrates where my processing of things are, where my focus is, and where I am in my struggle to heal.

So, here it goes. Some of this writing is repetitive information from past blogs, some of it is not. This is me putting my story out explaining my ongoing journey to wellness.

I am stretched quite thin and have been for some time. My responsibility to others, particularly my family and students has led me to neglect my own self-care.  The one thing that I promised myself when I was 18 years old was that I would run as often as I could and I have kept that promise through two difficult pregnancies and countless injuries.  I have always lived an active healthy life style, even when I was a child I was active.  I have strived to keep my body strong and healthy and it has served me well. 

I was born with a congenital condition that has been slowly destroying all my connective tissues. My body cannot produce enough collagen to bind my cells together properly.  The only way to be diagnosed with this condition currently is by keeping track of years of injury, and just not any injury.  I am talking about joint injury, bleeding and bruising problems, and organ prolapse.  I have a long list of injuries and surgeries that a person my age with long history of living a healthy lifestyle wouldn’t expect to have.

During my high school years, just prior to my first surgery, I was told by my doctor that if I let myself get out of shape I would lose my ability to walk. My joints were already that lose and dislocating. At 27 years old, after the birth of my second child, I was told that the only thing holding my body together anymore were my bones and muscles.  At 38 years old, I was told that only my muscles were holding my body together anymore.  I am currently 41 years old and my bones are now essentially floating in my body. It doesn’t take much for them to move out of place and cause considerable pain.  It also doesn’t take much to injure myself.  Just doing everyday things can cause me to end up with an injury that lays me up for days or weeks. I have to be very conscious of how I move my body.  I have to keep my upper body always aligned with my lower body and that is not an easy thing to do.    

I have been in physical therapy eight times since I was 14 years old. I have been told to stop running for years, but I refuse. My physical therapist doesn’t even try to tell me to stop running anymore.  He says now that, yes, running is hurting me, but it is also keeping my body strong, which is needed to hold it together.  

Running is also good for my mental well-being. There are days when I go running in the woods and scream at the trees.  I cry. I shout. I let everything out.  By the end of my run I feel tired, but purged of all that stress in my head that was tearing me apart.

I also write. Writing has become my “voice”.  Through the encouragement of another teacher who saw an ability that I didn’t realize I had, who was also a mother of an autistic son and a blogger herself, I found my “voice” for the first time in my life. I was 36 years old at the time I received my Autism diagnosis, which was after both of my children were diagnosed.   I was never taught how to be an advocate or to even how to advocate for myself, but as a parent and a teacher, I figured it out on my own.  Finding my “voice” only empowered me further. 

I now write two blogs, I have a Twitter account, and I run three public Facebook pages plus my private Facebook page. I am also a Founding Member of ANUE (Advocates for Neurodiversity and Unique Empowerment).  ANUE has become primarily an online support and resource group, but there is an option to have face-to-face meetings.  I am in contact with people all over the world through the internet and have meant some really amazing people.  

Would it be better for me to have more contact with people face-to-face?

Yes, I do believe it would, but my situation does not allow for that, so over the last four years I have created a large social network online. It has been a life saver for me, but in times of crisis, more face-to-face support would be better.

Becoming an advocate was not something I decided one day to become. I wanted to be a teacher since I was seven years old. I struggled with the decision of becoming an Art Teacher or a Science Teacher for years, but in eleventh grade I took my first Geology class, and that was my deciding factor.  I was going to become an Earth Science Educator and I did. My dream was to teach science in a public school setting and I did accomplish that.  I have been a certified teacher for 18 years, but I have not held a certified position in four years.  Due to my declining health and responsibilities to my family, my children in particular, I am no longer able to work in a classroom on a daily basis.  I still teach, however, just in a different way than I had originally planned.  This is where becoming more of an advocate comes in.

I went back to graduate school four years ago with the goal of earning a Master’s degree in Science Education. My passion lies in Science and I wanted to continue working in the field of Science Education.  Unfortunately, as always, life happens when you are making other plans.  My marriage collapsed unexpectedly two months into my program.  It was devastating, but I had to carry on for the sake of my children and for myself. 

I managed to make it into my second year of grad school and it was at this point when I began to realize there was a problem. Due to my executive function problems, I needed accommodations to get through the certain classes. My classes were mostly online and the university was in Montana with the requirement that two lab courses had to be completed on campus.   I live in Washington State. The University felt they could not provide the accommodations that I needed to be successful.  I had to make a choice, struggle through knowing that I would eventually fail or transfer into a different University all together.  I decided to transfer to Lesley University in Cambridge, MA. 

My experience with Montana State University and my experience as a teacher, a parent of two children with a variety of disabilities, and with ANUE showed me that my focus needed to be placed where my untapped strengths were pointing me toward, I am a teacher and an advocate and I needed to focus on Autism Education. Lesley University follows Universal Designed for Learning Standards.  Basically, an accommodation that is good for one person is good for all.  The accommodations I needed were already in place and I didn’t even have to ask for them. My experience at Lesley University was amazing and I finished in two years with a Master’s in Education with an Autism Certification.

My hope with getting a Master’s degree was that it would open more doors for employment with the ultimate goal of becoming self-employed. I even have started my business online as an education consultant and tutor.  I have not been able to really focus on it, however, due to the circumstances that my family is currently living in and my own mental health.  Once things start to calm down and become more stable, I fully intend on developing my business more.

Self-employment, a livable house, a place that I can call home, these are all important goals, but I think the biggest goal I have is to be finally able to heal. I have Complex-PTSD and I am in autistic burnout.  I keep pushing and pushing myself each day just to get through.  I am tired of trying to survive. 

I WANT TO LIVE!!

It is going to be a rough ride, though, to actually reach that point of stability where I can actually reach my goals. My support team is going to be such a pivotal importance in the coming years.  

Who are these people who will be that much needed support?

I am so used to struggling on my own. It was how I was raised.  I grew up with very little to no support, particularly in the emotional support department. My emotional needs were essentially ignored. This was very difficult for an undiagnosed autistic child who struggled with debilitating anxiety mixed with depressed states who didn’t have the words to express how she felt nor did she understand those feelings.   I was often told by my parents that their job was to provide clothing, food, and shelter. That was basically it.  I had to learn to make it on my own.  My marriage was like that as well, very little to no support, even during my darkest times in my life.  That situation is improving, however, but very slowly.  

It took me a long time to get myself to a place where I would actually ask for help. I was just so used to being told “no”, that my “voice” didn’t matter, that my needs didn’t matter.  I am more disabled that I even am able to acknowledge to myself, and it is disheartening, but I know I have worth and that I matter. It has been quite a journey getting to the point where I can say that.

I HAVE WORTH!!

I MATTER!!

So, who are these wonderful people who I could turn to for help?

I created a Mind Map to sort that all out. Doctors and counselors (for both my children and I), local friends, online friends, ANUE, immediate family members, fellow teachers and advocates, my pets, there are actually a lot of people and critters listed, expect for my extended family members. My hope is with time the bubble for Other Family Members will grow, but at this time it is not possible.  My parents basically disowned me for reasons I won’t go into here and I am unable to really speak to my sister for reasons that are too painful to discuss right now.  When it comes to learning about the effects of trauma and learning how to adjust my life due to my physical and neurological disabilities, I am a knowledge junkie.  I devour knowledge.  I am forever learning and I have a skill when it comes to researching.  I can find information relatively quickly and present that information in a manner that is easy for others to understand.  I am always looking for answers and new pathways to follow whenever I hit a roadblock in my journey through life.

I am still looking for the pathway that will allow me to get to a point where I can actually live and not just survive. I hope that day will come sooner rather than later.  I am tired, so very tired.

I Had an Epiphany . . . .

I had a bit of an epiphany yesterday while at work. How public schools are run is just plain weird.  I know how that must sound.  Here I am a product of the public school system.  I was trained to be public school teacher and have been one for the past 18 years.  Why this epiphany now?

It comes down to the fact that I have been home schooling for the past two years.  The way it is set up in our house is that we combine home schooling and unschooling. Home schooling is defined as “the education of children at home by their parents”.  Unschooling is defined as “an educational method and philosophy that advocates learner-chosen activities as a primary means for learning. While often considered a subset of homeschooling, unschoolers may be as philosophically separate from other homeschoolers as they are from advocates of conventional schooling”.

What this means for us is that I follow all the state mandated educational standards when I create the curriculum that I teach both my children, but the curriculum is geared toward their specific interests and needs using Universal Design for Learning Standards This is true differentiated instruction.

“In EdSpeak: A Glossary of Education Terms, Phrases, Buzzwords, and Jargon, Diane Ravitch defines differentiating instruction as a form of instruction that seeks to “maximize each student’s growth by recognizing that students have different ways of learning, different interests, and different ways of responding to instruction.” – Differentiated Instruction

My son has told me that he feels he has learned more being in a home school setting than he would have if he had stayed in the public school setting. The environment that we have created at home allows my son’s and my daughter’s needs to be met. This allows them to maximize their growth, because they are not constantly bombarded by the constraints and expectations of a public school setting and all the sensory crap that comes with it.

So, what was this about an epiphany?

As I stated, public schools are weird. It is designed to push through large amounts of children, who have been grouped together based on birth year, using boxed up standardized curriculum with boxed up standardized expectations of outcomes and behavior. 

Stand in a straight line! No talking! No fidgeting! Don’t touch the walls! Rush, rush, rush. Test, test, test. Must conform! Must Comply! Must meet standard as dictated by people who don’t know you or your situation. Must complete requirements for things you see no point in and have very little to no interest in. Must do all these things, but you really have no idea why, it is just how it has always been since entering Kindergarten. Also, be social, join a school club, and play sports!!

Then there are the teachers. One person responsible for 30-40 young people. If you are a secondary teacher, that number can be over a hundred or more. Teachers are told they must use differentiated instruction, they must use the canned curriculum, and they must use whatever strategy –de jour the administration or the state has said teachers must learn and use but with limited resources and extra unpaid time.

Um . . . . .

Do you see a problem here?

I understand the need for order. You cannot maintain 30-40 young people without some sort of expected procedure. I understand why a canned curriculum is convenient. A time table is set. Certain concepts have to be covered in a given time period. Everyone is getting access to the same education, right?

Unfortunately, that is not true. A one-sized model, or in this case, one-sized general education setting model actually ends up leaving a lot of kids behind with many falling through the cracks of this system of funneling kids through. It is impossible for one teacher to provide differentiated instruction to everyone when classes are so large, and those who actually get access to it, usually those with IEPs, well, it can be questionable. Is it really quality differentiated instruction? This infographic goes into what differentiation is and what it isn’t.  

Get them to graduate! That’s the point! After that they are on their own. Just get them to graduate!

Ya . . . . .

Over the years I have taught Kindergarten through 12th grade and I have heard that many times in one form or another. Just get them to graduate. I for one feel as a teacher that getting a student to graduate is not the end all be all of our profession.  What about actually educating these kids?  What about actually instilling the love of wonder and the desire to learn instead of shoving standardization down their throats?

schoolsfish

Schools are seen as factories and non-educators are mandating reforms that treat students like products, products that can take anywhere from 13 – 16 years to make. Yet, these non-educators in power are not seeing the return on these products as fast as they want and these products are not up to performance standards that they established without any teacher input. Here is the thing, CHILDREN ARE NOT PRODUCTS!!!!! THEY ARE ALSO NOT NUMBERS!!!

Children are living, breathing, emotional beings and each one of them is unique with unique interests and needs.

Sure, public schools get the job done, sort of. According to data gather by GOVERNING from the National Center for Education Statistics, Common Core of Data State Dropout and Graduation Rate Data, “U.S. public high schools recorded a four-year graduation rate of 80 percent for the 2011-12 school year, an all-time high. Graduation rates vary greatly by state and race. Nationwide, black students graduated at a rate of 69 percent; Hispanics graduated at 73 percent; whites graduated at a rate of 86 percent.”

That 80% is considered average and it is what they are calling an “all-time” high as of 2012. What about the other 20% of high school seniors who did not graduate? Again, this is an average. The number actually varies from state to state and varies by race.

My children are still in high school, but if it wasn’t for the option of home schooling, I fear they would have been part of that 20% failure rate by no fault of their own. We didn’t choose home schooling out of some thinking that public school was this horrid thing or for some sort of religious reason. We chose home schooling due to the intolerable environment of the public school setting becoming too much and my children becoming no longer able to cope with it.

SIDE NOTE: Before anyone suggests private school, no, we cannot afford a private school even if we wanted it and the only private school available near us is a private religious school. We are not religious.

My children made it through public school up until middle school. That is when everything began to fall apart. They struggled up until then, but they were making it with a lot of advocacy on my part.  I taught in the same elementary school that they both first attended. We were lucky in that regard and it helped immensely.  Unfortunately, we were in a small rural community who felt special education was just a babysitting service.  Teachers just started trying their best to support students on IEPs, because the special education department pretty much failed at following  IEPs and failed helping teachers to make specific accommodations that these students needed to be successful. We could have sued the district for failing to adhere to my son’s IEP and for refusing to put my daughter on an IEP when she was struggling more academically then her brother.  We decided to move instead due to my job as a science teacher being cut to less than half-time due to budget cuts.

We tried another school district. My son made it through another year and a half before the special education teacher at the middle school told me that they didn’t know how to help my son. His Agoraphobia and Misophonia were debilitating him so badly that he could no longer attend classes. My son is an independent learner, so this allowed me to continue working. My daughter soon followed her brother in home schooling due to a family trauma. She could no longer handle a full day of school, but she is not an independent learner. This complicated me working. I went from working multiple part-time jobs, to only working one.

Last year she started high school. Things started out okay, attending half-days, but things went spiraling out of control second semester. She ended up in a psychiatric hospital for adolescents. After seven years of trying to get her on an IEP, she finally has one. It took for her to have what we think was a psychotic episode for the school system to finally wake up and see that my daughter had specific needs that they were failing to acknowledge and address simply because she was quiet and not considered a behavioral problem. This was what I was continually told as to why the school system never put her on an IEP. She was an easy person to push through the system. She was a quiet student who didn’t cause problems and who worked her butt off every night trying to meet standard. It was exhausting for her and she ultimately ended up failing and stopped going to classes.

How often does this happen to high school kids around the country? My daughter is autistic, has bipolar, and has multiple learning disabilities that the school failed to address.  How often do kids just give up, because the system failed them?

Here we are, in another new school district, in our third year of home school/unschooling with both my children in high school attending a Home Link program two half-days a week with a dash of public school services thrown in every weekday morning to cover my daughter’s IEP requirements. This Home Link program requires 25 hours of educational time each week and my children have two additional teachers besides myself. We are three weeks in and so far so good.

Crossing my fingers and knocking on wood that my daughter will graduate high school in 2019 and my son will graduate high school in 2020. These next four years are going to be tough. With my family responsibilities, I am only able to work maybe a few times a month as a substitute teacher. Our income is limited. I have to do this for the mental and emotional well-being of my children, but not everyone can do this, though. Most people can’t.

Eighteen years ago I became a teacher. As an undergraduate, we were told then that the education system was archaic and broken. After all these years as a certified professional teacher, I can say that the system is still archaic and broken. The non-educators in charge have only tried to apply Band-Aids to a situation they know nothing about and have systematically stripped the power of teachers to do anything about it on their end.

Public school is weird and I have no answers.

I am going to end with a song by Hank Green called, “This isn’t Hogwarts! A Harry Potter Song”. It seems fitting.

“I Don’t Know What To Do.” – A Parent’s Dilemma

NOTE: This blog was posted with my children’s permission. It may be removed at any time if my children feel they no longer want this information shared in this public format. Information contained in this blog involves the struggle with mental illness in conjunction with autism. 

Trigger Warning: Reference to suicidal thoughts and plans for suicide. 

I don’t know what to do.

For seven and a half years we have been trying to find the “right” path, the “right” combinations of medications, the “right” program for school, the “right” way to handle issues at home. I don’t know what the “right” way is anymore.

You can’t help a person who doesn’t want to be helped.

I have to keep reminding myself that. You can’t help a person who doesn’t want to be helped.  All you can do is give them a door and directions on how to go through that door.  They have to decide if they (1) want to go through that door and (2) if they want to put in the effort necessary to go through the door.

Even if they do what is necessary to go through the door, they also have to keep putting in the effort to be able to stay on that other side of the door. If they don’t, they fall backwards.  I understand that maintaining that effort is hard, especially in the beginning.  It is like one step forward and two steps back. This is why proper support is so important.  It keeps the person from sliding too far back.  They need a hand to hold on to, a hand that can help guide them, especially on those really difficult days

The thing is, that hand that is always there can only do so much. That hand can beg, plead, bargain, demand, surrender one day only to try again the next.  The hand can keep doing that day after day, but that hand will start to question how long they can keep at it. How long do they keep putting in the effort when the other person that they are trying to help refuses to grab hold? How long do they allow the other person to continue to disrupt the lives of others in the family? 

It sounds selfish, I know. A parent should not waiver when helping their child.  A parent needs to be there always, right?

I just don’t know what to do anymore.

We have tried so damn much, even tried things multiple times just to make sure. This week my oldest will be ending her 90 day outpatient treatment program and I am afraid for her.  I am afraid what is going to happen next and the stress that it will put on her and our family. The first month and a half had been very promising.  She was calmer than I had seen her in such a long time.  She was excited to go the program. After losing three months of school due to emotional distress, she actually wanted to go to this school/counseling/outpatient program.  Unfortunately, things have taken a rather negative turn.  Over the last month and a half and she has had two depression break through periods.

She never made it to the program last week and only managed three hours of school work. That doesn’t bode well for passing 10th grade.

Seven and a half years ago, my daughter was diagnosed with bipolar. Over the years, that diagnosis evolved into Bipolar II and Autism Level 2 with accompanying expressive language impairment.  She has started on psychiatric medication when she was only eight years old. She has been on as many as six different medications at a time taking them 3 – 5 times a day and still we have been no closer to establishing stabilization of her moods.  She will tell you that the medications have slowed down her mood fluctuations, but that is it. The official term for the type of bipolar she has is Juvenile Onset Bipolar – “Fear of Harm” Phenotype that is ultra-rapid cycling. 

For more information about “Fear of Harm” Phenotype – The 6 Dimensions of the Fear of Harm (FOH) Phenotype

For more information about rapid cycling Bipolar – Rapid Cycling and its Treatment

She ended up in the hospital this past spring due to hallucinations and suicidal thoughts. The voices were telling my daughter to use knives to kill herself. At that time it was thought that maybe what we are dealing with is Schizioaffective Disorder – Bipolar TypeMy daughter has talked about her hallucinations for years, but this was the first time the voices were telling her a suicide plan.  Only time will tell if her diagnosis evolves again.

Whatever my daughter is struggling with, we have yet to find a combination of therapy and medications that will help her stabilize. Our goal is six months of stable moods before we consider her stabilized.

It is not just the rapid mood cycling that is causing issues, it is also the mixture of bipolar and autism. Problems arise, because treatment for one will cause the symptoms of the other to worsen. This requires a very delicate balance of care.  There is also her age to consider.  In the state where we live in, once you turn 13 years old, you have a choice regarding your mental health care.  You can chose to not receive care, you can chose to not have your therapist disclose information to your parents, you can chose outpatient or inpatient care.  Inpatient care can be involuntary, but that takes a very long paper trail documenting pain, struggle, and failure.

We were fortunate enough to be able to have access to the outpatient treatment program that my daughter is just now finishing. It is two hours away from our house and it is an all-day affair (8:00AM to 4:30PM) Monday – Friday. At first it was workable.  It was summer time. I wasn’t working (I’m a teacher). We had been able to get fuel vouchers from Special Mobility Services, but only for a short time.  Our fuel vouchers were revoked for reasons we still do not fully understand and neither does the treatment center nor my daughter’s counselor. 

I live in a state that is rated 49th in mental health care.  What the treatment facility told us was that we had fallen victim to a system that is broken. There was nothing we could do.  I wasn’t going to pull my daughter out of a program that was helping and that she wanted to attend. This meant paying for all that fuel ourselves.  We are a low income family. Having to pay for the fuel in order to get my daughter needed medical care has put a considerable financial hardship on us.  Food is scarce in my house. Bills are paid late or are only partially paid. I stay in town for 8 ½ hours at the library Monday – Friday waiting for my daughter to finish her day, then we drive two hours to get home.  Most days my son joins us so he doesn’t have to be home alone.  We don’t have internet at our house or television services.  Being at the library allows my son access to the internet so he is able to work on school assignments.

Both my children are autistic and both are students of our local Home Link/homeschool program. They have recently started school in a third school district. The first failed to follow my son’s IEP, the second was honest with us about not knowing how to help my son. When people ask my son why he is in home school, he often tells them, “The school district didn’t know how to help me with my mental illness”.  He has debilitating anxiety issues (Generalized Anxiety Disorder, Agoraphobia, and Social Anxiety) as well as depression. He also has misophonia  which causes considerable problems for him. Just to be clear, Autism is not a mental illness.  It is a developmental disorder.  When my son speaks about his mental illness, he means exactly that.  He is not talking about his autism.

For more information about Misophonia – The Symptoms & Triggers of Misophonia

The first school district refused to grant my daughter an IEP citing loopholes as the reason. When we moved to the second school district, we discovered that she was three years behind her peers in reading ability. I ended up getting my daughter a private tutor to reteach her how to read and my son how to write. My daughter has gained ground these past four years, but is now four-five years behind her peers in reading ability.  It took nearly four years and a hospital stay before the second school district granted my daughter an IEP.  Both my children are highly intelligent, but struggle with learning disabilities.  Both have dysgraphia and my daughter also has dyslexia. Both need extra social and emotional support at school.

All four of us, both of my children, my husband, and me tend to have paradoxical effects from medications that are designed to affect the brain in some way. If not paradoxical effects, then no effects at all, meaning no benefit from the medication. Whether it is psychiatric medications (all of us) or pain medications (mainly me) it just doesn’t work for us.  Between adolescence and the sensitivity issue with medication, finding the “right” combination of medication has proven to be quite a challenge for my daughter. 

The most recent change was introducing Lithium. Yes, Lithium, the go to drug for bipolar, has been tried. It affected her bladder, her eyes, and caused agitation. Her body also metabolized it too fast. We could never get a high enough therapeutic dose in her body and the medication was increased three times to pretty high levels. We went back to using Tegretol which she has had some success with in slowing down her mood cycles. Hydroxyzine, which is an allergy medication, has helped with her high levels of anxiety. It is fast acting, but not enough. She was also taking Geodon (another mood stabilizer) that helped strengthen the effects of the Tegretol, but has since stopped due to insurance problems with getting that particular medication. She takes medication three times a day and is able to add a smaller hydroxyzine dose two more times to address her anxiety if needed.

Next week she starts half-day attendance at our local high school where she will receive the services listed on her IEP. The rest of her schooling will be at home.  This past week she fell into another depression period. She stopped caring for herself, stopped caring about anything, becoming defiant and aggressive. 

Part of this is not her fault. She has no control over what her brain does.  What she does have control over is using her skills, not hurting people verbally or physically, and wanting to get help. I understand that when you use up too many “spoons”, using your skills is just not an option.  I get that.  I have been there many times.

I don’t have the same struggles as she does, but I am personally familiar with some of them, and I also have the advantage of being an adult. I have had years of practice in developing my coping skills. I am autistic as well.  I struggle with debilitating anxiety and I also struggle with depression and Complex-PTSD, but I don’t have bipolar.  I have no idea what it is like to be at war with yourself in the way she describes.

I can help guide her in calming strategies and help her establish a sensory friendly environment. I can help her break down her school work into more understandable parts. I can remind her to take her medication and I can take her to her counseling appointments. I can advocate for her both with the doctors and with the school.  I can be there when she needs a hug and encouraging words when all her internal struggles become too much. I can tell her that I love her and will always love her even when her brain is telling her that everyone hates her or when her brain tells her that she hates everyone.  I can be that hand that is always there for her, but she needs to put in effort as well.

I can’t do everything for her. I understand that she is developmentally delayed, much more so than her brother and me, but she is also a teenager with typical teenage behaviors. She does not need to be coddled.  She needs to be treated as the 15 year old that she is.  She is a capable person, but either doesn’t believe it or doesn’t want to be. She regularly pulls out her helpless card citing that she can’t do anything; this includes school work, house work, and any every day thing.  She doesn’t like to be told that she is 15, but says instead that she is nine years old or six years old depending on the day and the level of her anxiety.  Sometimes she is clearly 15 years old and makes it well known, especially when she wants to control everything and everyone. The age she feels fluctuates with her moods.

I often remind myself, particularly on harder days, of all the amazing things that makes my daughter who she is. She loves Doctor Who and Star Wars.  She also loves Science Fiction, Action Adventure, and Fantasy. Her, her brother and I often communicate using echolalia from these different genera.  She speaks the language of science and often talks about becoming a limnologist when she grows up. She is the “Blue Earth Saver” as she is known on the computer games she plays.  She loves animals and is so gentle with them.  She is an incredibly perceptive and empathetic person who is deeply affected by stories of war, violence, death, and struggle. Her school work has to be adjusted for this reason.

My daughter is such a strong person and has such clarity when she is between mood swings. She has been through more crap during her short time on this planet than most adults have had to deal with their entire lives. This is why I think she is tired.  She is tired of the constant struggle.  She is tired of nothing working.  She says the medications just covers things up, just a Band-Aid, they don’t work. She tired of the constant war in her head and feeling afraid to leave our house. She is tired of everything hurting. Too bright, too loud, too rough, too many expectations, no understanding, no order, no predictability.  Home is safe,  home makes sense, home is where her things are, home is where her pets are, home is where she can escape into unconsciousness and sleep the day away.  

Therein lies the problem. She has been progressively giving up. Giving up her dreams of the future, giving up trying to do well in school (she was on the honor roll all through middle school), giving up on practicing her skills, giving up on trying to work with the family as a team, giving up self-care, just plain giving up on everyone and everything.  She is done.  That is it. No more trying. She is done with it all.

With the days getting shorter and colder, she is already beginning to slide backwards. The outpatient center was helping her, but continued progression requires her to put in the effort. She is done.  No more effort. 

So, what does a parent do in this situation? Just let her continue to decline?  Have her end up back in the hospital over and over again?  Have a judge end up finally taking her rights away so she can become an involuntary inpatient? Have a judge take mine and my husband’s rights away as parents which would lead to her being pulled out of our house and put into the system where a social worker controls her life?

These options are unacceptable to me.

I don’t know what to do.

I don’t know what else I can do to help her.

Seven and a half years of fighting for services from the schools, doctors, and the government. Seven and a half years of struggling to find the “right” combinations of medications. Seven and a half years of constant questioning and research on my part in trying to settle that little voice in my head that says we are missing something. She shouldn’t be struggling so much. WE ARE MISSING SOMETHING!!!!

Her autism wasn’t diagnosed until she was 10 years old, two years after she was diagnosed with bipolar and a year after her brother was diagnosed with autism. When she was a toddler, she was tested twice for autism, but they told me she didn’t have a high enough score for the diagnosis.  What I didn’t realize at the time was that they were using a criterion that was biased towards boys. I had to push for her to be reevaluated to check for autism, because once she was put on medication, her autistic traits started to really show. The bipolar was overshadowing her autism.  I had to push to have her evaluated for learning disabilities.  I knew as a teacher and a mom that something wasn’t right, but, once again, she was over looked.  She wasn’t a behavior problem at school.  She was quiet and could be ignored. I had to get outside professionals to evaluate both my children, because the school didn’t see a problem, didn’t see how they both struggled far too much.

I have actually fought for longer than seven and a half years. I have fought for my children’s well-being since they were born. I have been a parent for 15 ½ years.  I am also tired and I am running out of options. 

My hand is there and I will continue to offer it to my daughter no matter what, even if she doesn’t take it. I am a parent.  It is my job. I am not giving up on her. She is my Sunshine and always will be.  

The Issue of Living in a Duality of Perception

“Who do you see when you look at me?”

“Do you actually see me or do you see what you want to see?”

“Why can’t you see me, the real me?”

These are questions I have found myself asking for as long as I can remember. I have multiple invisible disabilities.  Seeing me in a classroom or a waiting room or a doctor’s office or even in my own home may not provide the image of someone who has multiple invisible disabilities.  What do you picture when you hear the word “Autism” or “Autistic” in conjunction with me? 

Do you picture a woman who is a mother and a wife, has been a teacher for 18 years, has two blogs and maintains three Facebook pages, has a Bachelor’s in Science in Earth Science Education degree and Masters in Education degree with an Autism Certification, and is transitioning to being self-employed?

Or do you picture someone who rocks back and forth and side to side, who flaps and hits her head, who has trouble speaking at times, who has misophonia and can’t tolerate ticking noises, or eating noises, or tapping noises, who has meltdowns and shutdowns, who has debilitating anxiety and panic attacks that result becoming in a ball on the floor, who also often hides in a quiet corner, who has tactile, audio, visual, and olfactory sensitivity, who has proprioception difficulties and executive function problems, and who struggles with transitions and self-care?

Both instances describe me. The first instance describes my major accomplishments in my adult life. The second instance has Generalized Anxiety Disorder and Complex- PTSD intertwined with Autism in the picture presented. I have read many personal stories doing this very same comparison and I find it very interesting how often there seems to be this duality of perception when it comes to an Autistic person. There is the image, either positive or negative, that people see (or want to see) and this image is only half the story, half the person. Then there is the reality that an Autistic person is actually both perceptions wrapped together to form a whole person, the Yin and Yang of perception. You need both to see the whole story. 

For a long time there has been this prevailing misconception that involves a picture that is generated by people when they hear the word “Autism”. This image involves that of a non-verbal Caucasian boy who sits in a corner alone and rocks back and forth and who is also obsessed with trains.  Then there is the ever popular Caucasian boy behind the glass wall.  There are others that are similar, such as the movie “Rain Man” portrayed.  Where do these images come from?  There has been blogs written about this so I won’t divulge into it.  Un-boxed Brain wrote a great blog about it.  You can find that here – Images of Autism.

I went to a conference this past week that centered on disability, advocacy, and inclusion. I really enjoyed it and I got to meet and hang out with two really great ladies who are also advocates. There were problems, however, with the sensory environment (i.e. all the fluorescent lights and loud pounding music).  It appeared that participants’ with sensory needs were not taken into account when planning the conference. This conference was 3 ½ hours from my house and I went to it alone and stayed in a hotel for two nights.  I hadn’t had a respite in 2 ½ years, so I considered the conference to be a short respite for me. On the last day of the conference I began to feel weird. I wasn’t ready to leave. I felt the respite was too short and I really enjoyed being in a place where people spoke the same language. There was a level of understanding there that I don’t often come across in my daily life.

The conference ended on Thursday. Today is Saturday and I still feel weird. Last night I started to try to put words to what I was feeling.  “Disconnected” seemed to fit.  I feel disconnected.  My family and I are in the process of moving an hour away from where we currently live.  The walls of my house are bare and my living room is full of boxes.  If felt weird coming home.  In an attempt to put this disconnect into something coherent, I ended up posting the following to my Facebook Page:

“Finding myself hunched over in my chair in the kitchen with my arms bent up close to my chest and the back of my palms up against each other while I am rocking back and forth. A sarcastic thought going through my mind, “Nah, I’m not Autistic at all.”

Me rocking back and forth is not a good sign. It means I am stressed. Having trouble transitioning back from the conference. Been feeling weird since leaving the hotel. Just feeling disconnected. I am going to go for a run after binding my bad knee. Maybe running in familiar territory will help.

In my professional life, people are very surprised to learn that I am Autistic. I get, “But you don’t look Autistic!” or the big eyes and tense body posture like I got at the conference. Even in my personal life there are people who “forget” about my diagnosis. They seem to only want to see me in a certain way.  Yes, I am Autistic with a pride capital A!

Days like today are hard. Transitions are hard. It takes time. It doesn’t help that my walls are bare and my living room is full of boxes in preparation for moving. Okay, enough wallowing. Time to head outdoors, hit the back trails, and go commune with the trees.”

In struggling with the recent realization of my self-care problems and dealing with what the heck has been going on with me since leaving the conference, I also posted the following:

“Yesterday, my son made it very obvious to me that I have a problem with self-care. He told me that I have a bad habit of not eating and he is right. I have the hardest time with preparing food and actually eating it. I have to really think and plan all the steps necessary to make a meal and then eat it. Is it lack of spoons? Is it executive function problems? Is it my sensitivity to hot weather? I don’t know. I don’t really eat in the winter either, come to think of it.

I tell myself that we are a low income family and I need to save the food for the kids, but going grocery shopping yesterday I realized once again that I hadn’t really gotten any food for myself. I didn’t think too. Just my standard Diet Coke. I bought ingredients for my special gluten free spaghetti and just the thought of having to cook it makes me nauseous. What is that?

I talked to my husband this morning about my self-care issues and he told me he has known about that for a long time. Why have I not been in tuned with my own body? Maybe that is the problem. I am out of sync in some way. Here it is after 10:30AM. I have been up for four hours and I still haven’t eaten. Both my kids have eaten, though.

The idea of moving my body correctly from my bedroom, down the hall, to the kitchen, then opening the fridge, trying to decide what to eat, moving my body in the way necessary to take out whatever I decide on, and then completing the numerous steps necessary to prepare the meal, and dealing with all the sensory stuff on top of it exhausts me just thinking about it. Then there is the whole process of eating and dealing with the sensory stuff with that. By the time I am done preparing a meal I don’t have enough energy to eat.

Don’t get me wrong, I like to cook, but I have to plan in advance and conserve spoons when I want to make big meals like my special green chili enchiladas, or my stews and soups, or homemade jo jos, or any special dessert dishes. I don’t do it very often, because it takes so much out of me when I do.

It is frustrating really. I know I need to take better care of myself, so why can’t I?”

Today is Autistic Pride Day. I take pride in who I am.  I was diagnosed 4 ½ years ago at the age of 36. I found out I wasn’t broken after living a lifetime of feeling that there was something not right about me.  Again, that feeling of being disconnected, an out of sync feeling, a problem of not feeling that I fit anywhere and no one seemed to see me, the real me, anyway. I felt like I was often screaming in my head, but no one took notice. That all began to change after being diagnosed.

“Who do people see when they look at me and have had time to talk to me?”

“Who do people see after they have a chance to work with me?”

I have been targeted in my professional life for how I am perceived. I was targeted before I was diagnosed and I was targeted after. A principal wanted me out because I was a thorn in the administrations’ side. I had been a teacher in this particular school district for six years.  I knew the law and I knew my students rights.  I questioned the special education department and I strongly advocated for my students as well as for my own children.  I was bullied by the principal the year I was diagnosed, because, for some reason, I looked weak to him even though he had no knowledge of my diagnosis.  When I found out he was targeting other teachers as well as certain students, I took action.  I followed the teaching contract exactly and took the necessary steps to rally my teacher’s union to come together and finally say enough was enough.  I told myself either he is going down or I am going down with him. We succeeded in our mission. The superintendent asked for the principal’s resignation before the end of the school year.  That was four years ago.

A year ago I was once again targeted in the work place. This time, though, my diagnosis was known.  I was bullied, told to rise above my literal mind, and criticized over and over again.  After I asked for the accommodation of being given specific instructions so I could do my job at a proficient level, I was fired. The reason being, and I quote, “We do not want a classroom teacher who requires accommodations.” It didn’t matter that I had been there for three years and that I was skilled in the job I was hired to do. I wasn’t seen for my ability. In fact, the person that fired me told me that she had never even looked at my resume.  My experience didn’t matter to her.  I was not wanted, because of how I am as an Autistic person and that I had asked for accommodations.  

I have been discarded in my personal life as well. Thrown away because I was not how they expected and wanted me to be. I was thrown away at the same time that I was coming to terms with the reality that I am an Autistic individual.  Instead of finding support in my personal life, I found emptiness.  Social media was a godsend.  I was able to create a social network online and then eventually I was able to actually meet actual autistic adults and their allies.  For the first time in my life I was seen, really seen and understood.  That was liberating for me. I found out I was not alone. I also learned that I had worth.

“If people want something to be wrong about you— they are going to make things wrong about you. That is why it is my belief to never try and prove anything to anyone. Real diamonds belong to people who know how to spot a real diamond; they don’t belong to people who need to be convinced that they are real diamonds. It’s the idiots who need to be convinced of something that they cannot already see.”

― C. JoyBell C.

So, today is Autistic Pride Day. It has taken me a long time to acknowledge that I am highly impacted and that it’s okay that I am. Sure, I can function independently for the most part, but that doesn’t erase the fact that I am a disabled person who needs accommodations.   I need to acknowledge that I am capable and that I have skills, but I also need to understand that I have limitations. I need to feel safe in voicing these limitations and I need to understand that I can advocate for myself  and keep advocating regardless of the results. 

When people encounter my skills, they tend to erroneously assume that I can function at a consistent high level all the time. This is simply not the case.  Due to the perception of others that think I am really not that impaired and that I am “high-functioning”, there is this expectation that I must maintain which inedibility leads me to push myself beyond my stress threshold to a point where I can no longer “pass” as neurotypical. When this happens people get confused, they get frustrated, and they get angry. They stop seeing my strengths and start seeing problems that they didn’t see before, problems they don’t want to deal with. This leads to a perception change and I am not longer seen as having worth. It is unfortunate that this is has been a common trend in my life. It is not often that I am seen as a whole person, but when I do it is amazing.

Yin and Yang cat
Image found at  pinterest.com

“Yin / Yang : Two halves that together complete wholeness.” – Personal Tao

I am the sum of my strengths and limitations. It is the Yin and the Yang of what makes me the person I am and I like who I am.

 

I would like to introduce you to the whole me, The Aspie Teacher!

Blog Photo

Take stock in the fact that you are not alone. Other Autistic individuals are out there.  We hear you, we see the whole you, and we understand. Take pride in who you are. You are worthy and don’t let anyone else tell you differently. 

“You can be the most beautiful person in the world and everybody sees light and rainbows when they look at you, but if you yourself don’t know it, all of that doesn’t even matter. Every second that you spend on doubting your worth, every moment that you use to criticize yourself; is a second of your life wasted, is a moment of your life thrown away. It’s not like you have forever, so don’t waste any of your seconds, don’t throw even one of your moments away.”

― C. JoyBell C.

**All images have been link to source. The photo of myself is my own.

An Awakening

My son is thirteen years old and he just finished 8th grade.  He has proclaimed for years that writing is his nemesis. He is autistic and has been diagnosed with two writing disabilities, dysgraphia and a written expression disability.  He is highly verbal.  So much so, in fact, that his brain often times goes faster than his mouth and he ends up talking so fast while clenching his jaw that people have a hard time understanding him.

He sees such wonder and beauty in the world and is a total knowledge junkie like me.  He saw the ocean for the first time when he was seven years old and the way he describe what he saw was pure poetry, such detail and emotion wrapped up in wording that is not typically used by a seven year old.  He didn’t realize that he had described the scene before him with such beauty. He was so overwhelmed with awe that the words just came out of him. He still doesn’t believe me when I tell him the story of that first trip to the Pacific Ocean. He continued to express himself in poetic terms when describing new experiences, but he never clued into what he was doing.

My son struggles a lot with self-esteem when it comes to producing written material.  Reading and speaking come easy to him. Science, math, history are all subjects he enjoys, but when it comes to writing, he wants nothing to do with it. He explained to me as I was writing this blog, “I want to run away from writing. In fifth grade I didn’t even want to acknowledge that writing existed.”

The thing is, writing is necessary. It is everywhere in everyday life.  It is essential to learning and it is an essential job skill.   Writing skills are an important part of communication.  If writing is so important, what do you do when it is incredibly difficult to get your thoughts down in written form?  What do you do when you don’t have access to a keyboard and your hand doesn’t want to cooperate in forming letters with a pencil?  This is what my son has struggled with all his life. In most cases he has avoided writing when ever possible. Then came the option of typing, which he also struggled with, but has greatly improved upon with ongoing practice. The schools where he attended before also would not address his writing difficulties. With the help of a special education tutor these last few years, my son has really blossomed in being able to articulate his thoughts in the form of writing on the computer. 

My son has been homeschooled full-time these last two years. In the state we live in, students are required to show proficiency in interpretation of other people’s writings.  Interpretation can be difficult to someone who is autistic, particularly due to many who think in literal terms. My son is no exception. My son’s tutor recommended poetry to him as a way to try to practice slowing down when speaking to people. He was to start reading it out loud, but he did not feel comfortable doing that.  What I ended up doing instead this last quarter of the school year was help my son learn how to interpret other people’s writing by completing three poetry analyses and then having him write he own poems in any form that he wanted.

He has definitely struggled with this project.  The first poem he tackled was “The Road Not Taken”, by Robert FrostMy son is very literal and this first poem caused a lot of difficulties for him.  What we decided to focus on was helping him understand what a metaphor is.  The second poem he tackled was “A Bird, came down the Walk”, by Emily DickinsonThis poem was a little easier for my son to analyze, but he still had some trouble trying to figure out the meaning behind the poem was.  The third and last poem he analyzed was “The Raven”, by Edgar Allan Poe. This analysis came easy to my son.  He connected with the poem.  He knew right away what the poem was about, which is depression.  Unfortunately, my son is very familiar with depression.  He was diagnosed with depression when he was six years old. In fact, it was his depression that lead him to a counselor that began questioning if he was also autistic.  This questioning lead him to finally being diagnosed with Autism along with various anxiety disorders. 

With this poetry project, My son has become much better at interpreting other people’s writing, but I am also sadden that the poem he connected with was a poem about depression. This whole project has been an eye opener to both my son and I, a kind of an awakening. Again, I saw this ability in my son that still hadn’t been really tapped and brought out into awareness.  It seemed the right environment, a little prodding, and LOTS of encouragement was what was needed. My son learned that he could express himself in ways he hadn’t really consciously explored before. He still doesn’t think he is very good at writing poetry, but I reminded him that he is just starting.  It takes practice and patience to develop a skill.  

The last part of the project was for my son to write his own poems.  He has graciously allowed me to publish them here.  Again, he had so much trepidation about writing these poems. He felt it was something that he really couldn’t do very well and this thinking he had about his ability as a writer really bothered him.  He worked very hard on his metaphors. He really wants people to understand what he is trying to express in his poems.  He wrote them all on his own.  He had no help from his tutor and only a little advice from me on ways to structure a poem All the words are his.  All the imagery is his.  All the metaphors are his. I hope you enjoy.


Poem #1 – Written on June 2, 2016

The Unknown

The unknown, a place of festering dreams, ambitions, and fear.

A place some never dare see.

Some throw themselves into the fog of war, to fall into fire.

There are those who sidestep the smoke to never move at all.

Even the armed can be flatted if they sway.

Some spot greatness beyond the fog, but do not cross, they do not change.

Those who do become colossus.

A well-chosen path can turn an infant into a giant.

Traverse the unknown and find greatness.


Poem # 2 – Written June 8, 2016

Britannia’s Call Against Rome

Against the red flood, against the force of extinction!

They think us barbaric; think us monsters, even though genocide is their trade!

Their discord is they bring prosperity.

In which twisted life is loss of identity a paradise?

Their accursed banners have reached our shores.

We shall stop our quarrels to stop these invaders.

If we do not, we will fall into their maws!

 

 

Thoughts About Diagnosis, Therapy, and Early Intervention

(Trigger Warning: ABA Reference)

Both my kids were diagnosed with Autism when they were both already in elementary school. The school had nothing to do with it. I went to a private psychologist for the evaluations. I actually had to convince the school that both were autistic. To them, an autistic boy was someone who threw chairs and did not understand puns.

The school wouldn’t believe me when I showed either of my children’s evaluations. My son is a textbook autistic child, has been that way since day one, but he internalizes his stress and shuts down rather than explodes. He also loves puns.

Mytumblr_inline_nobw3kbKgp1rxc9ln_540 daughter is also a textbook autistic child, but she is a girl who is quiet at school and tries her best to hide and go unnoticed. She internalizes everything, then when she is in a safe place, like home, she explodes. 

Here is a post I wrote addressing stereotypes and misconceptions about autistic children – Stereotypes and Misconceptions – There is more to the Story.

My son was seven years old when he was diagnosed. He was the first of us to be diagnosed only because he was in counseling for depression and the counselor noticed he wasn’t making eye contact. My daughter was ten years old when she was diagnosed and was diagnosed with Bipolar two years prior. I was diagnosed after both my children were at the age of 36. That was almost five years ago.

People have asked me why my children were diagnosed so late, since kids are now diagnosed as preschoolers and sometimes even younger. I tell them that I saw nothing out of the ordinary with them. They were like me and I hadn’t been diagnosed yet. You can read more about that here – How I Found Out I Was An Aspergirl.

Here is a reflection I wrote after the one year anniversary of being officially diagnosed – Life as an Aspergirl – Reflection.

Lots has changed since I made my reflection post, lots of detours, redirection, and starting overs, but that is a story for another time. 

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Both my children have been in counseling for mental health issues since they were very young. Counseling also served to teach them coping skills once the determination of Autism was made. They needed help in learning how to navigate in a world that is not designed for them. They also needed help dealing with depression and debilitating anxiety.

I never once put them in ABA (Applied Behavioral Analysis). I wouldn’t put them in ABA even if I had known about their Autism earlier. ABA is torture, pure and simple. Many adults have come out stating the abuse they suffered, many developing PTSD due to their experiences with ABA as children. I never went through ABA myself, but I observed through a two way mirror a three hour period of time of two boys being subjected to ABA. You can read about that experience here – Intial Reaction to ABA.

I am a teacher. I understand the importance of early intervention. I wish I had known early on that I am Autistic. I might have been spared much of my struggles over the years had I known. I didn’t get the luxury of an early diagnosis and early intervention, yet I made it through.

I want people to understand that there is no magic window that everything has to be accomplished during a specific time when a child is growing and developing. Hope is not lost when this supposed magic window closes. I know this from personal experience as a teacher, as a parent and as an actual autistic person who wasn’t diagnosed until adulthood. I had to relearn some skills and over come other unhealthy ones that I had developed on my own as I tried to survive in a world I didn’t understand. The point is, you have time and all children develop when they are ready and at their own pace.

Yes, a majority reach their milestones about the same time, but just like all pregnancies are different, all children are different. My son has dysgraphia, something that wasn’t diagnosed until he was in sixth grade. I once had my son’s first preschool teacher tell me that if he didn’t figure out how to hold a pencil correctly by four years old, he never will. That claim she made was complete bull.

I had many, many kindergartners come into my science classroom over the years that had never held a pencil, or used scissors, or even knew their colors, numbers, or letters. Guess what? They all learned how to hold a pencil by the end of the school year.

Both my children struggle with holding pencils. Both have dygraphia that was diagnosed when they were older. They both use those fat kindergarten pencils as an accommodation, a pencil that they both can hold correctly. If that preschool teacher of my son’s had bothered to try to have him use a kindergarten pencil or put a thicker finger holder on a regular sized pencil, he wouldn’t have struggled so much with holding a pencil in the first place, but I digress.

KeychainAs I have stated, both my children have been in counseling for some time. My daughter is now 15 years old and my son is 13 years old. I live in Washington State. Here, when a child turns 13 that child has the right to decline treatment unless it is inpatient care. At 13 years old, children in this state sign their own release forms.

My children can legally refuse to go to counseling, but they don’t. They actually ask to go, because they were never forced, they were never pushed into compliance training (ABA), and they were always told why they were being asked to attend counseling sessions.  They had buy-in into the treatment they were receiving, and it made a huge difference in how affective the type of treatment they were receiving was. 

My daughter had OT (Occupational Therapy) at four years old. She has always wanted to go back, but we were living where we didn’t have access to a private OT and the school wouldn’t qualify her for OT services. OT is available where we live now and my daughter is once again back in OT by choice. I feel my son would really benefit from OT, but it is up to him. The OT therapist is going to allow my son to observe during his sister’s OT sessions to help him feel more comfortable. If he decides to give OT a try, then great! If not, then I will respect his decision. It is his body and he has the right to decide what happens to it. 

I understand that there is a problem with giving very young children a say about the type of therapy they receive, but my son was six years old when we started talking to him about counseling. He was depressed. He knew something was wrong even if he didn’t know the word “depression”. He was tired of being sad and angry all the time. He wanted help. My daughter was eight years old and she didn’t like how she felt with all her ups and downs. She also felt so guilty after her rages. She wanted help.

Kids can understand a lot more than many adults give them credit for. Sit down and talk to them. Even non-speaking autistic children communicate and understand a lot more than it might appear. Let them have some sort of say in what happens to them and let them express their concerns.

Here is a useful link for healthy interventions – 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm.

autism-tshirt-1If you have to fight to get them to therapy, something is wrong. If they fight with the therapist, something is wrong. If they are quiet and subdued during therapy, but loud and talkative at home, something is wrong. If they crumble into shutdown or meltdown after therapy, something is wrong.

That “wrong” thing could be incompatibility with the therapist, ineffective therapy strategies, unsafe sensory environment, abusive techniques, or a missing diagnosis. My children have been evaluated twice and discovered additional conditions each time. It now looks like my daughter will have to be evaluated a third time soon due to questions regarding her co-existing conditions. My daughter was born autistic, but her Autism was overlooked by the so-called “experts” for years for various reasons.

For more information regarding those various reasons, click here. There is a link to an additional article by Tania A. Marshall embedded in the title. 

Also, not all conditions show up early on. Learning disabilities, such as dyslexia, can be hard to diagnose early on. My daughter was nearly 13 years old before she was officially diagnosed even though it had been suspected since she was eight.

Unfortunately, life can be hard and traumatic, especially when adults do stupid things without regard to children in their care. My son developed PTSD and agoraphobia at 11 years old due to irresponsible choices an important adult in his life made. Mental illnesses can show up later. Personality disorders can’t be diagnosed until the child is much older, closer to 18 years old. This is what we are facing with my daughter right now. 

Neurological evaluations are expensive, so trust your gut and do the research. Learn what traits are actually autistic traits. Don’t just assume or excuse certain challenging behaviors as autistic. These challenging behaviors could be an untreated co-existing condition.

Listen to people who have these diagnoses. They are the true experts. If you feel something is not right or is missing, then you are probably right. Don’t just take the so-called “experts” advice or conclusions. My children and I have been on this journey for a long time. You have to keep moving forward, don’t give up, and find what works without causing trauma.

The story of my son’s anthem – Keep Moving Forward – Move Along.

A poem by my daughter – “The Sun and the Moon” – Expressions of PosAutivity: #AutismPositivity2014.

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(Image found at naruhinaph.tumblr.com)

**I do not own any image used in this post. Unless cited, all credits are linked with each image.