Advocating, Why it’s Important

22 Dec

An opinion piece by David J. Archer

 When I was growing up, the word disability was never used in our house. I went to a residential special education school as a child. I’ve been to more therapist than I care to remember and no one ever told me I was disabled. Nobody ever said you cannot do that, try something more in your ability range. I was so lucky to have the parents I did. Did they make mistakes, yes but they never held me back. I want that sense of inclusion that I got from my parents and schools for all people who are in some way segregated from the “norm”.

The world did not treat me like my family did; however this did not make a difference to me because I had people who believed in me. When I became a father it was my turn to advocate for my children. I was not the world’s greatest dad, far from it. I did however fight for my children to get the best and that required using my passion for them by learning to advocate.

I got my first experience of someone advocating from a woman who went to our church. She had two children with cerebral palsy, and both girls were in wheel chairs. They were bright, exciting children who inspired everyone in our community. Their mother wanted them to get moved to a regular education classroom (mainstreamed); however the DOE would not allow it. At that time (the mid-nineties) children with CP went to a special school, meaning that they were segregated from other children of the same age. It took a White House visit on a national television show to get the DOE off their position. Then the girls were placed in an inclusive class. Besides the obvious educational value of mainstreaming the girls, who were the intellectual equivalent of their classmates, there was a real need filled by socializing with their pears.

That was when I learned two important words. First was inclusion and the second was advocacy. For me the logical conclusion to my experiences was that we as a community must speak up to change the way people saw us. Not a people with a disability but as people. Not as an intellectually impaired person but as a person. Assume competence is not only true but right.

I have no formal training as an advocate. Most of us do not. Maybe someday I will. That does not change my obligation to myself to do what I can to change the status quo. We as a community must not let society return to the horrors of the past. We must not accept the current ignorance prevailing in small minds. We must work together regardless of the disability; physical, mental, or developmental for a society that accepts all people with the same dignity and respect.

What Autism Means to Me

23 Nov

 

I was diagnosed asperger only this year. This is my 68th year. It was very important to me because I could finally put my life in a perspective that I could understand. No thoughts of what could have been, only thoughts of finally belonging. It is the final piece of the puzzle that is my life. The feelings of gratitude, peace, and a passion to see Autism understood by all are some of the gifts given to me this year. The work being done by the Autism community through Blogs, Books, Organizations (That include people on the spectrum), and our Twitter community gives me hope for the future for our children.

When my son was diagnosed about 10 years ago all I could see was the rough road he had ahead of him. Today, I know he will have a good life full of people who love him. He has so many talents, Poetry, Visual Arts, and a truly wonderful and complex personality.

I join with parents around the world working to make the world a safer place with more understanding of our very special children who have a different, yet totally valid, way of seeing and expressing their vision.

 Every day I read about parents who are using new techniques in communication with their children. Children without language that were once considered devoid of intellect are using new ways to write their thoughts and words. The result of the work done with new ideas about teaching reveal an intellect that is capable of great understanding of the world around them. Like all children they see, hear, and understand a lot more that they had been understood to have.

Autism to me means a new era of acceptance is within our reach. Many arms are reaching out and working for better understanding of Autistic Spectrum developmental disorder. We are breaking down the myths and misconceptions associated with Autism.

 

In Memorial

20 Nov

Sunset-at-bayfield11.jpg

                          Terrence Costello 1943-2013

 

My best friend in High School Terry died this year. I just learn of his passing a few days ago. I am very sad of the loss of my friend of over 50 years. My heart and prayers go out to his family. He is a cherished brother, father, and grandfather.

Terry was my friend and we had a glorious time in our senior year in High School. In the first years after high school our lives went in very different directions. Terry remained in Ottawa and I moved to New York City. But we remained in touch and when I heard he was getting married I caught the first flight to Ottawa  to attend his wedding. A few years later when I got married Terry drove nonstop to Alexandria, Virginia to attend my wedding. That’s the way Terry was, a real great guy and a true friend. I brought my family to Ottawa in the late seventies (I believe it was) and spent time with his family. We visited his cottage were we all had lots of fun catching up on news and watching our children play.

As the years past, family life and raising our children we found ourselves less in touch. Then Facebook and social media brought us back in touch. Terry loved playing Pioneer Trail. We would share game items to complete our tasks in the game. Sending messages back and forth on Facebook was great and I always enjoyed hearing news.

God speed my dear friend. I believe we will meet once more. I know you always be remembered.

Below is an excerpt from my last post about my friend Terry.

“One of the ways that I navigated the social side of school came by way of my best friend Terry who was older and acted like a mentor. He and I were always together and I mimicked his manner the best I could. I took my social cues from him. We had a lot of fun and were often running afoul of the school administration. Terry had a girl friend that had a dancing act with her sister that they performed in small rural night clubs across the Ottawa River in Quebec. Terry and I would take dad’s car and drive to the clubs to watch Cheryl and her sister. I got my first exposure to alcohol at the clubs. Terry could handle his drinking and knew his limits, I did not, so Terry ended up driving us home.

On the weekend I would go over to Terry’s house for breakfast. His mom would cook fried eggs on bread fried in bacon grease and a large portion of bacon. There was always lots of coffee and great conversation. Terry’s sister taught me how to dance the jive and to slow dance for my senior prom. Terry’s home was like a second home to me and for that short time in high school I felt safe to take risks and follow my many interest.”

David J. Archer, Sr.

Photo: Sunset over Lake Huron

 

In Search of a Diagnosis Chapter Six Part Two

24 Oct

The High School Years

                                                                  David J. Archer, Sr.

It was September, 1961 when I entered my junior year of High School. This was a turbulent and exciting time in the world. John F. Kennedy becomes President of the United States, Alan B. Sheppard becomes the first American in space. Vietnam War officially begins as the first American helicopters arrive in Saigon. Bay Of Pigs Invasion of Cuba begins, ending in failure. Khrushchev orders construction of the Berlin wall. FCC Chairman Minow claims that television is a “vast wasteland.” Music was passing from the Rock and Roll era as Soul music was accepted and got air play with music from the likes of by Sam Cooke, James Brown, Solomon Burke Ben E. King, who’s “Stand By Me” is a #1 R&B. Pop music takes over from fifties R&R with groups like Gary (U.S.) Bonds, Bobby Vee, Jive Five, Linda Scott, and Adam Wade who had the top 10 singles in the US in September 1961.

I was very excited about going back to school as even though I had given up on getting good grades in my classes, accepting that I was never going to do well by the traditional standards of grading. Getting approval from teachers by having high scores on tests was not something I cared about. I cared about learning and gaining knowledge. We all are given gifts of abilities and some of us have a different way of accessing those gifts. In my case I had a thirst for knowledge, a tenacity that wouldn’t let me give up on my dreams and thanks to my dad an analytical mind that I inherited from him. So the subjects that I was passionate about I learned and the rest I wouldn’t waste my time with. School was a struggle and I missed a lot of days when I would refuse to go. I don’t know what my parents told the school but it seemed that the teachers and the administration gave me wide latitude even though there was always a gentle push for me to get better grades (translated that meant I was expected to try harder.) In that respect numbers were just as important then as they are now with such a strong reliance to supposedly measurable results.

 Even though I was considered different in many ways I never experienced any bullying at my High School that is any I was aware of. Being I was pretty well accepted by my classmates, was very much a loner. Some of the ways that I seemed different to others was for instance, I was the only one of the students who wore a jacket and tie to school or carried a briefcase. I had a hard time talking to people, feeling very shy and awkward. I pushed myself at times way out of my comfort zone, because I so desperately wanted to fit in. Even If I couldn’t understand the code that it seemed everybody knew but me. I had a group of six or seven friends and we would hang out after school. They were kids who got me and accepted me. One of the ways that I navigated the social side of school came by way of  my best friend Terry who was older and acted like a mentor. He and I were always together and I mimicked his manner the best I could. I took my social cues from him. We had a lot of fun and were often running afoul of the school administration. Terry had a girl friend that had a dancing act with her sister that they performed in small rural night clubs across the Ottawa River in Quebec. Terry and I would take dad’s car and drive to the clubs to watch Cheryl and her sister. I got my first exposure to alcohol at the clubs. Terry could handle his drinking and knew his limits, I did not, so Terry ended up driving us home.

On the weekend I would go over to Terry’s house for breakfast. His mom would cook fried eggs on bread fried in bacon grease and a large portion of bacon. There was always lots of coffee and great conversation. Terry’s sister taught me how to dance the jive and to slow dance for my senior prom. Terry’s home was like a second home to me and for that short time in high school I felt safe to take risks and follow my many interest.

Following my interests during the final two years of high school did much to keep me out of serious trouble. I was involved in: amateur theater doing set design, character make up for theater groups, and worked as a member of the stage crew for the local amateur ballet company. I had a job after school working at the local television station assisting a puppeteer who had a children’s show. While I was working at channel thirteen I met and became friends with a young man who had a show called Club 13 that was a teen dance show patterned after “Bandstand”. His name was Peter Jennings and he would later help me get adjusted to New York City years later when I moved there. My time at the children’s show ended when the man I was working for attempted to molest me. It took me decades to be able to talk about it or why I so abruptly quit the show. I told no one about what happened as I was so confused.

Staying true, to me seemed to be such a difficult task, as I didn’t know who I was other than a very scared young man. Leaving high school was the biggest change in the last seven years. The future was a big unknown and I could not visualize my future or where it would take me. The adult world was telling me who I should be and that to me was impossible and a mystery. All my logic and analysis of my world was failing me. Attempts to communicate failed and I was not getting through to my parents or teachers with my thoughts, fears, and feelings.

 

© David J. Archer, Sr.

High School of Commerce 1963 Ottawa, Canada My Class Photo

High School of Commerce 1963 Ottawa, Canada
My Class Photo

In Search of a Diagnosis Chapter Six High School Years (part one)

11 Sep

It was the 1959; Buddy Holly, Richie Valens, and The Big Bopper were killed in a plane crash. That was the first time death came close to me. Buddy and Roy Orbison were my two favorite singers then suddenly Buddy was gone. Music was a big part of my life. Music helped me feel, unlike the emotional structure of relationships that didn’t I understand, music spoke directly to me without any interpretation, pure feelings. I used music to self soothe. Music brought sense, out of the confusion, to my world.

In September it was back to school for me. I was worried about starting a new school (a routine that by now was all too familiar). I was originally assigned to a fully academic high school with no supports for my sensory and fine motor issues or learning disabilities.

 At that time students were not screened for disabilities. Children with Autism as well as children with Down’s syndrome and Cerebral Palsy were not sent to school but were warehoused in State institutions under inhumane and deplorable conditions. This practice continued in New York State until [i] 1987 when Willowbrook State School closed. Later in the mid 90’s a good friend of mine Mary Somoza lead the fight in New York State to mainstream special needs children whenever an appropriate classroom setting could be found or if necessary created by providing such services as wheel chair access or services as needed. This is practice that is known as inclusion. As a result her two girls with Cerebral Palsy and above average intelligence were able to attend a regular education high school.

I believe that my parents and teachers where aware of my issues. No one seemed to know what if any form of intervention was needed or available in 1959. In 1960-61 researchers were just beginning to do research on Dyslexia. I believe that the brain becomes hard wired at a certain age hence the need for early intervention. This is my belief also held by others but there are some would disagree. Compared to what we know now 1959 was the dark ages of research of the brain structurally and chemically. I believe that cognitive therapy, much the way Barbara Docker-Drysdale worked with me. Finding solutions and teaching coping skills was the major way to effect change for me. When coping with a spectrum disorder; physical therapy, sensory integration, and learning disabilities must be addressed as early as is possible. I don’t want to change who I am warts and all. I want to be my authentic self without causing damage to the people around me.

On my first day at school, I misunderstood the reading assignment and as a result I ended up attempting to read almost one hundred pages, I only had to read ten pages for the assignment. I gave up reading long before the second page overwhelmed by the 100 pages I thought were assigned. The next day I promptly told my mother that the work was too hard and I would not go back. I was also completely mystified by the social structure. Asking a question whether from a student or a teacher terrified me.

I was then assigned to the High School of Commerce which turned out to be a better fit. I wanted to fit in and be accepted like everyone else, but was not one of the cool kids. Students were not allowed to wear Jeans or Sneakers (Called Gym shoes back then). I wore a jacket and tie and carried a big brief case for my books. The teachers were always yelling at me for calling them either sir or madam. I was rigid and formal to everyone. The only thing that made school bearable was my trumpet. I had learned to play in grade school and so I joined the school band. We mostly played at the weekly school assemblies. We rehearsed four days each week before school in the music room.

Whoever remembers anything of note about their freshman year, except that I had a crush on an 11th grader? Having crushes on unattainable girls solved the boy girl problem. Girls scared the hell out of me. I would literally be speechless and turn red when confronted by a girl. My favorite subjects were bookkeeping, math, and science. I didn’t do well in subjects that either had a lot of reading or were not concrete in nature. I learned through my ears and my eyes. Not by reading about a subject, that I couldn’t do. I still can’t without a lot of effort and desire. I learned by listening and watching. If I watched a person install a light fixture once then I could do it. Anything mechanical if I watched once I could replicate it.

My favorite pastimes my freshman year were things I could do alone. Such as going to the movies, and putting on Plays with my marionettes. I had picked up a set of well made marionettes while in England. I built a stage and put on shows for mom and dad. I designed sets, adapted stories to scripts and made costumes. In science class we did this experiment where we added a cup of pond water to a fish tank with an enriched environment. To encourage pond life to grow, we then looked at drops of water under a microscope to see the multitude of tiny life living in the water. I tried the experiment at home and much to my father’s dismay I had hundreds of mosquitoes hatching into our basement. I had not noticed that the jar of pond water I had brought home was full of mosquito larvae.

By the summer of 1960 I was slowly readjusting to life back in Canada. My uncle gave me a job as a laborer in the family construction firm. This was perfect because the firm was in London, Ontario and the summer cottage on Lake Huron was only 60 miles away. During the week I stayed in London and headed to the lake on the weekends. When I went back home at the end of August I was tanned and very fit from the heavy physical work. Not to mention a few hundred dollars richer.

My parents put me in therapy supposedly to help me with my meltdowns. Most often my trumpet got the worst of it, as I would take out my frustrations and hysterics by smashing in the bell of the trumpet. Each time dad would take it in for repair. Now that I was a teenager my meltdowns were throwing things and verbally abusing whoever was misfortunate enough to be near me. My sister adored me and my older brother stayed as far away from me as possible. My younger brother was only five or six at the time and I largely ignored him. My family pretty much ignored me and left me alone. Truthfully I was happy to be left alone. I lived in my own little world happy as long as I had my records, television, and bicycle that I would ride for hours.

My therapist put me on medication it was most likely Elavil although I have no memory of what meds I was given. I do remember they made me very tired all the time. This was the beginning of a long list of medications that I would be prescribed over the next fifty plus years. Looking back my high functioning ruled out the diagnosis of Autism or Asperger. No one who treated me over the years felt comfortable with a diagnosis of ED or bi-polar even though that was the diagnosis I was given. For me not knowing they why has haunted me most of my life.

School was hard and I had been moved down to a much less academically demanding curriculum for my 10th grade. However, I now was required to take typing five days a week for an hour a day. Because of my fine motor problem I was never going to pass the class. For the next three years I was told that if I didn’t pass typing by the end of my senior year I would not be allowed to graduate. Neither I nor the teachers were aware of my disability at the time. My disability would become evident to me years later. In the mean time I was told to try harder. My typing teacher really had it in for me. For all four years of high school he made my life a living hell. I struggled along the best I could, but my self-esteem took a big hit along with my self image. This effected how I related to myself and to the rest of my family along with fellow students at school. I was David the screw up who couldn’t do anything right. When I would try to express my opinions about something I would get strange looks and then told that I didn’t know what I was talking about.

The best thing about was that I had finally stopped moving around and would be going into the 11th grade come September. I spent another summer working construction and going to the beach weekends. Then it was off to junior year of high school.


[i] Willowbrook State School was a state-supported institution for children with intellectual disabilities located in the Willowbrook neighborhood on Staten Island in New York City from 1947 until 1987. Source Wikipedia http://en.wikipedia.org/wiki/Willowbrook_State_School#More_scandals_and_abuses

I am a survivor

5 Sep

IMGI am a survivor

I have:

Hurt people that I love

Said bad things

Said inappropriate stuff

Struck out in:

Confusion frustration hurt terror and anger

Flailed in an incomprehensible world

Expressed my feels inadequately if at all

 

I am a survivor

 

I have struggled to survive all my life

I won’t stop now

 

I am a survivor

 

People have:

Rejected me

Blame me

Judged me

Scapegoat me

Failed me

Erase me from their history

Taken away my stuff

Taken away the ones I cherish

Told me I left them, abandoned them

You never really knew me

Never wanted to understand me

 

Until I am called to leave my mortal coil

I am a survivor

Deeper Levels of Stigma

18 Aug

Looking for the light

17 Aug

 

172

 

Hurt

Sad

Soon the walls

Trapped

Isolated

Sadness

Depression

Blackness drowns all

Clawing

Looking for light

Frantic

Nails clawing at the darkness

Small cracks of light

Far away

Hopelessness

Can anyone hear me?

Meeting Autistic friends is #posAutive

29 Apr
Laura N. @HardAspie, David A. @Dispatches_Dave, Susan M. @_Susan_m_, Lindsey N.  @AutismIsARose, Chou Chou S. @docscantlin

Laura N. @HardAspie, David A. @Dispatches_Dave, Susan M. @_Susan_m_, Lindsey N. @AutismIsARose, Chou Chou S. @docscantlin

Wonderful friends Leah Kelly @leah_kelley and Renee Salas@srsalas13

Wonderful friends Leah Kelly @leah_kelley and Renee Salas@srsalas13

After chatting almost every night for almost a year, Laura and I finally meet. So cool!

After chatting almost every night for almost a year, Laura and I finally meet. So cool!

Chou Chou and David Archer reconnecting on the CEC panel. Joyous times for all of us.

Chou Chou and David Archer reconnecting on the CEC panel. Joyous times for all of us.

Lunch with Chou Chou, Lindsey, and myself

Lunch with Chou Chou, Lindsey, and myself

Doc, Myself, and Chou Chou at Lunch

Doc, Myself, and Chou Chou at Lunch

An excerpt from my presentation in Philadelphia

As I started to log on to twitter I started to see people talking about asperger syndrome in the feeds and list of trending topics. Slowly I began to engage people and talk about myself and my son. (My son was diagnosed around 2003.)

Finding the online community and talking about my experiences with others convinced me to seek a diagnosis from a psychologist in New York City. I could not afford a full Neuropsychiatric workup so I was evaluated by a psychologist specializing in adults on the spectrum. After about six, hour long sessions and some test she gave me she told me that I was on the Autism spectrum. Since officially Asperger is no longer in the DSM-V that was the closest I would get.

I am happy with that. In the last year since I found my community both online and with local support groups. Finally, receiving a diagnosis, which fits and feels right, has changed my life. My chronic depression has lifted, my rage has vanished, I started a blog to talk about my journey and advocate for disabilities. There is a peace in my heart that I had never known before.

For me that was all the proof I needed to tell me that my long search for answers is over.

I have been so lucky to be part of and belong to the Autistic community. It is awesome and fills me everyday with joy for life.

 

Feel the passionate joy of being

12 Feb

For Cathleen Ellen Archer – Sister

Straight to the heart

the wind of leaves,

and shards    as of glass

for our eyes have lost

a colour of many hues

Within the desolate heart

aglo

A single light of colours

lit for us

of piercing loveliness

her gift.

And the heart lit

against this night

And through the wind

does not give way

blessed we are

with her colours, her love.

Poem by my Brother Gwilym Archer  1977

It’s all about — a walk in the park by Etienne Anders

27 Dec

It’s all about — a walk in the park.

Autistic History Month 2013

5 Nov

I dedicate my blog to Autistic History Month 2013. My blog is about my 60 plus year journey through life. The triumphs ands trials of learning how to relate to a world that I didn’t understand and did not understand me. My life goes from the early days of child psychiatry to the present day. What we know today about the brain and it’s early development. That Autism is a developmental issue and all the secondary issues such as sensory integration, Stimming, and the realization that being on the spectrum does not mean you are intellectually challenged.

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