Where education meets advocacy...

Can Autism Acceptance and Autism Recovery Coexist?

acceptance.recovery

Back in January (2014), I introduced you to Scott Lentine via his poetry. I continue to be impressed by self-advocates who use the power of their words to inspire others to greater levels of understanding. As a blogger, I can fully relate. I write to inspire, motivate and support others on the journey toward inclusion.

Here are Scott’s most recent poems:

Acceptance of Autism

Wanting to be free
Wanting to be me
Trying to make people see
And accept the real me

Some people think my voice is too loud
And that my mannerisms strike them as being odd
This perception of me by others keeps me feeling blue
But there are plenty of struggles in life that I must get through

I am determined to show my critics my true personality
Hoping that people move away from their narrow-minded mentalities
I want them to know that I am a bright young man
Who is willing to take on as many challenges in life as I can

I want to make new friends and create a new start
I like to develop new relationships with an open heart
I hope to be accepted for the person that I am
So people can understand a true autistic man

Fall in New England

Fall is such a beautiful time of year
There are plenty of sites to see here
Leaves with bright colors orange, yellow, and red
Signaling a change that the year is near the end

But fall is also a time of new beginnings
It is a time to start to learn new things
A time to look at the world in a different way
A time to learn new strategies to handle each day

Let’s take this time of change
And focus on new ways to think
Let’s give individuals with challenges a new look and rearrange
And find a common link

Fall reminds us to turn over new leaves
To think about starting new goals to achieve

I call on the world to change perceptions
And give all of us a new reception

Scott’s poetry is gaining recognition. Recently, he was interviewed by Autism Live:

After viewing his interview, I did a little research to learn more about Autism Live. From their website: “Autism Live is an interactive web-show providing support, resources, information, facts, entertainment and inspiration to parents, teachers and practitioners working with children on the Autism Spectrum. Viewers are encouraged to participate by asking questions of experts, offering suggestions for topics to be discussed and sharing progress their children have made.”

Yet, here is where it gets a little interesting for me. On the “About” page, the first two lines of show host Shannon Penrod’s bio reads: “Shannon Penrod is the proud mother of a nine-year old who is recovering from Autism. Her son Jem was diagnosed at the age of two and a half after having lost virtually all of his language and social skills.”

Does this raise an uncomfortable flag for anyone? It does for me. My advocacy does not stem from a place of “curing” or “eliminating” one’s disability; rather, I recognize that each of us is unique and special, with gifts to be shared and challenges to overcome. So this left me feeling more than a little unsettled.

I do not in any way seek to diminish the value of this web-show or Scott’s experience. I continue to be impressed by his writing and I am so pleased that he has gained the recognition of this program.

But let’s have the conversation. Can autism acceptance and autism recovery coexist?

Photo Credit: kreezzalee

Tell us your thoughts about autism acceptance and recovery in the comments section below!

Watch This Self-Advocate Shut Down Anyone Who Wants To Put Limits On Her Learning

-DON'T LIMIT ME!-- Powerful message from Megan with Down Syndrome - YouTube.clipular

This video is fabulous. 

Watch self-advocate, Megan Bomgaars, a young woman with Down syndrome who is not afraid to tell her educators to “DON’T LIMIT ME!” This video originally was shared by Everyone Matters.

Share this video with your friends and colleagues. What do you think? Did Megan get her message across? Tell us in the comments section below!

Who Should Speak For The Disability Community?

nothingaboutus

On any given day, the feeds of my social media accounts are brimming with resources, stories, and motivation about disabled people: parenting tips, educational advice, how to work with someone who has a disability, etc. About us, but too often not including us. There are countless communities geared towards supporting parents, family members, and professionals, sharing words of encouragement on how to be the best advocates for the disability community. And while I understand such support networks are usually well intentioned, in many cases, they take the power out of the hands of the people who know themselves and their needs best: people who are actually disabled.

Don’t get me wrong – allies, or what I refer to as advocate-allies, are incredibly important to advocacy efforts. “Ally” implies being supportive, while “advocate-ally” paints a more accurate picture of people who join in along with self-advocates. And true advocate-allies deserve the utmost respect. But a real advocate-ally is someone who doesn’t overshadow the voices and efforts of the people who experience being disabled every single day.

Of course, as a disabled child is just beginning life, parents and professionals have a responsibility to play a key role as advocates. Obviously, a four-year-old wouldn’t be able to discuss medical procedures or know what kind of environmental access modifications are needed, so we can hope that parents will make sound and informed decisions on their child’s behalf. But as disabled children grow older, if they can communicate effectively in any way, then the primary goal should be to embrace the child’s form of communication, working with them to develop their own voice for advocacy.

It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.

My feelings on this are rooted deeply in my experiences. As a passionate self-advocate, I owe so much of what I’ve learned to my parents. Even before my birth, my mom and dad were my number-one advocates, ensuring my well being and making decisions they felt were best. But as soon as I was old enough, I was routinely involved in all conversations and decision-making that directly affected my life. My parents continued to advocate not for me, but with me. Nothing about my disability was kept secret from me. While it was tough to face reality at times and I had to mature much faster than so many people my age, I can truly say I’m grateful for how my parents raised me. They remain supportive and are always there to advise me, but they laid a strong, solid foundation for me to uncover my own voice for advocacy.

Even so, I can imagine from a parent’s perspective that it can be incredibly difficult to turn off the instinct to speak for your child. When I was little and would try explaining something to my parents, I’d always declare “You’re not in my body. You don’t know how I feel.” And though I’m now in my 20’s and I learned some of my best advocacy skills from my mother (who also has a disability), she still sometimes starts to speak for me out of habit. We just laugh when this happens, because I know she just can’t help being my mom, but ultimately, both of my parents respect that I speak for myself.

Advocate-allies will be of the most benefit by modeling traits and attributes of a good advocate so that as children get older, they can become effective self-advocates. I’d love to see more families and professionals banding together not to speak for the disability community, but instead to encourage the young disability community to build up self-awareness and self-confidence. Doing so will contribute greatly to raising generations of empowered self-advocates who are in tune with their needs and their bodies.

Unfortunately, I don’t believe this kind of support occurs as much as it should. If so many people are all about advocating for inclusion, then why are people who actually have disabilities so frequently excluded from the equation? Though I haven’t crunched the numbers, it seems to me that the existence of platforms for advocate-allies far outweigh support systems needed for the empowerment of self-advocates. I believe this points to an urgent need for powerful advocacy communities to redirect their focuses on building up generations of self-advocates. In turn, this will encourage lawmakers, major organizations, and society at large to value and more seriously heed what self-advocates have to say.

So don’t count us out! A lifetime of support is essential, but only when self-advocates are given the chance to be the number-one advocates for ourselves can progress in the disability rights movement truly be made.

The Ode to the Autistic Man (and other poems)

POETRY

As a blogger, I have been fortunate to meet many people committed to the inclusion of individuals with disabilities. These stakeholders include parents, educators, community leaders, philanthropists and self-advocates, all of whom raise their voices about an issue to which they are passionately committed.  Conversations take place online via blogs and various social media outlets; with rare in-person connections.  Do not let that concern you, these conversations are no less rich and these connections have the power to affect real and meaningful change; there is no questioning the strength of social networking.

It’s always exciting to make a new connection online. I’m flattered when someone seeks my advice and it thrills me when someone reaches out with an invitation to speak or consult.  And yet every once in a while I get a message like this one, from a self-advocate, and I’m swiftly reminded of why we all continue to blog, advocate, share and connect.

Dear Lisa,

I am Scott Lentine, a 26 year old man with high-functioning autism (PDD-NOS/Asperger’s) from Billerica, MA, outside of Boston. I graduated from Merrimack College magna cum laude with a Bachelor’s Degree in Religious Studies with a Biology minor. I am currently an office intern at the Arc of Massachusetts in Waltham, where I try to persuade lawmakers to pass key disability resources legislation to improve the lives of people with developmental disabilities. I have some autism song/poems in this email that I wanted to have you read and show to people you know on the autism spectrum and to friends you know who support autism causes. I hope you and your friends love these poems! I also have a blog on WordPress about autism. The link is http://scottlentine.wordpress.com/ Hope you enjoy the poems and blog!

Here are the poems that Scott has shared:

Just a Normal Day

Never knowing what to say
Never knowing what to do
Always looking for clues
Just a normal day

Feeling unsure
Totally perplexed with everyday life
Always on edge never certain
I wish I could lift this curtain
Needing to constantly satisfy my need for information
Always online searching for new revelations
Going from site to site
Obtaining new insights every night

Trying to connect with people my age
Attempting to reveal my unique vision
But ending up alone and unengaged
Feeling like my needs a total revision
Just a normal day

Can’t You See

Can’t you see
I just want to have a friend
Can’t you see
I need the same connections in the end

Can’t you see
I want a good job
Can’t you see
I need to have stability and independence and be part of the general mob

Can’t you see
I want to be independent on my own
Can’t you see
I want to be able to have my own home

Can’t you see
I want the same things as everyone else
Can’t you see
I want to be appreciated for myself

The Ode to the Autistic Man

Try to understand the challenges that I face
I would like to be accepted as a human in all places
Where I will end up in life I don’t know
But I hope to be successful wherever I go
I would like to expand my social skills in life
Making new friends would be very nice

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day

By the age of 20, I will have made tremendous strides
I know in the future, life will continue to be an interesting ride
I have made new friends by the year
I will be given tremendous respect by my family and peers
I hope to get noted for bringing the issue of autism to the common man
So that autistic people can be accepted in this great land

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day

Marshfield Memories 

Today is a beautiful day on the beach
There are plenty of people and dogs to see
The water is warm and the sky is bright
And seeing some people flying a kite

I am having a fun time with cousins and friends
Hoping that this day will never end
The ocean and sands are comfortable and feel so right
Taking a walk towards Brant Rock in the strong sunlight

Now it is the evening of the third of July
Watching the amazing fireworks from the seawall go by
Talking with family about the latest moments of the day
And meeting some new friends along the way

It was a great time on the beach today
Reading a book and going into the ocean on a bright clear day
These are moments that I will remember for a long time
Being on the beach on a nice warm day is truly sublime

Photo Credit: V. H. Hammer

How did you like Scott’s poems? Give him a word of encouragement in the comments section below!

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These 12 Self-Advocates Make Some Of The Strongest Arguments For Inclusive Education

End Segregation End Stigma Full inclusion Now! - YouTube.clipular

Amidst the Dylan-esque ballad, this 10 minute video highlights 12 self-advocates as they make the case for ending segregated special education classrooms. Please take the time to watch and share this powerful video produced by the Coalition of Inclusion Advocates.

Only 13% of students with intellectual disabilities are included in regular education more than 80% of the school day

My Name Is Henry Frost. This Is My Road To Inclusion.

HenryFrostQuote

 “Learning is easy when the teacher knows you can learn. ” Henry Frost

My name is Henry Frost.
This is my road to inclusion.
Inclusion,
Communication
and Civil Rights.

It has been a long year.
A good year. A hard year.
The beginning was easy.
Being angry was easy.

I had support from many people. Many people who are here today
started this with me. It was easy because together we were fighting.
This was not just my fight, my community was fighting.

Standing together for communication inclusion and civil rights for all people.
Messages of support every day made the time happy for me.
I have a community.

All Autistic people should feel this. All Disabled people. All people.

Together this is the goal for change . Alone is not living.

All the people together will change.
I was alone always living.

My family full of love and acceptance for all people. Before alone for more ideas of
community of disabled people.

I am Needing People knowing not guessing thinking feeling of old minds othering my life.

Knowing is different.
Knowing people choosing the life not people choosing the life for them.

I did not know about disability autistic advocacy before Tracy Thresher and Larry Bissonette. Tracy and Larry are in a movie called Wretches & Jabberers.

Tracy and Larry opened the door for hopeful times of freedom communication community friendship. The way of having rights not just in my home.

Having the rights of all people everywhere.

Showing me Communication. Not typing. Many years of typing for learning. Years using proloquo2go talking about wanting not thinking.

My life is more than books and wants and food.

I got on the typing train. I read about inclusion, communication, and civil rights.

I had good times of learning. Good times of eating life and rally typing.
Tracy told me I was not alone. Tracy told me he knew the hard times of typing. To keep working. Tracy knowing the feeling of people thinking I was not thinking. Tracy and Larry Knowing the feeling of lonely life alone.

Knowing together is everything different for me.

All disabled people need to know we are together fighting.
Not just adults.
All kids need to know the big community .

Meeting people like me who made the choices of life changed all.

Then I am knowing I want this life.

It is hard to not have once you see.

Watching Wretches & Jabberers I am feeling the almost of hopeful times.Tracy told me about conferences in Orlando and M I T. My wanting to learn feeling and being together feeling was very strong.

My family saw. I had hopeful times . Tracy invited me home to Vermont to learn . I went to IC I to learn.

All the people saw my intelligence .

No test first.

It was very free. I never had many people understand.
To wait. To listen.
Not outside home.

I did not want to go back to people unknowing.

I read more words from typers watching my movie to feel community.

At the MIT Conference Mary Schuh asked, “Why don’t you go to the school in your
NEIGHBORHOOD?
I did not know.

Typing. Every day. It is hard. Many times of getting stuck.

I read more. I made my plan for going to the school in my neighborhood. My mom talked to people who were on the road before. Many people thinking inclusion. Mom got the same grade 5th grade school work so I would be ready for 6th grade.

My old school only for special education did not have books just copies.
The people did not see me as them.

My knowing of inclusion life made time at my old school very sad. I could not stay.
I told mom and Russ they understood.

My new school was at my home.

Learning is easy when the teacher knows you can learn.

Mom and Renee knew.

My thoughts grow.

Typing with Renee all days 8 hours. Renee was a different teacher.
Renee was a Disability Studies learner who supported my typing and taught me.
All teachers knowing Disability real History is important. Learning about the Disability Rights movement was good.

More community.

I knew but did not know .
Wishing I was knowing always.
My family did not know all of the history the disability leaders .
My family did not know every day life for disability.
Many or most people do not .

My family thinking it is better to protect my knowing about discrimination and prejudice.

I love my family.

It is not possible to protect my knowing.
It is my life.

My family learned learned more and understood more.
They understand Nothing About Us Without us is for Me too.

I read Ari Ne’eman . He also knew. He knew the feeling of segregation. It is not a good feeling. I wrote him many times but I did not send. I met him at The Autism Summer Institute in New Hampshire.

I took a step. I met more autistic advocates.

They also knew.

They saw me .

I went back to Tampa.

The district said no again. I could not go to the school in my neighborhood.

I wrote to Ari about my plan for inclusion. He told me he was there for help and support. ASAN was there. Ari Ne’eman telling of equal rights for disabled people .

Many Autistic people helped.
Many people helped.
My community helped.

I worked on the homework of my neighbor for six months to prepare for school.

On August 23rd I got to the worksheet on Martin Luther King and Cesar Chavez.

I read about The Civil Rights Act and Dr Martin Luther King’s work.
I did not know why all people did not know about this Act.

I decided to fight for rights that are mine.

I decided to take my message of inclusion and The Civil Rights Act to the RNC convention. All the people said yes. My friend Tres Whitlock and his family stood too . I wrote about it. My sisters wrote about it.

Then Amy Sequenzia wrote I Stand with Henry.
Emily Titon had an idea to make a FB page and Amy and Steve helped. Alyssa wrote about it and all the people who wrote I Stand with Henry posts.

Everyone stood together.
“I Stand With Henry” had all the people hoping for better for the community.

I walked to the IEP with this feeling of my community. I did not feel alone.
My IEP and 18 people came.
They came to tell me no.
It is hard to be 12 and have adults tell you are not a person.
Not a person granted equal rights to all people person in the Civil Rights Act. You do not have the same rights as your neighbor. As your sisters.

It was hard.

But I was not afraid.

I was angry.

We made a petition on Change.org . I liked that. I wrote, my mom and Russ wrote . Mary Schuh and Lydia Brown helped . More together. It was a good idea. People started signing. So many people.

Then I had many IEP meetings.The IEP meetings were 16 hours. I, Ari Ne’eman, VenSequenzia, Cheryl Jorgensen ,Mary Schuh Stephanie Ong, Russ, Mom told the rights of all people to the meeting.

Many people helped. On November 14, 2012, they said I could go to school in my neighborhood. They saw the rights that are mine. They said I could go to school in January.

I walked to school on my first day January 23rd 2013. I met Miss Jackson my aide.
She is one of the knowing people. She did not say prove 10 times.

Then I met teachers.

The first week was easy. They said to take it easy get used to it. Okay.

I have accommodations. I am Hard of Hearing.
Here is the problem, people think I can hear . Or do not care that I do not.
Both are problems.
Being Deaf is not the problem .
Do you hear me?

I like the students.

Two teachers from the IEP meetings were my teachers. They did not change the old thinking.

They are learning. I am trying to be patient for their learning. I am wanting more to be the student not the teacher for their learning.

The old thinking hurts. Not presuming my competence hurts.
The feeling of strength got smaller in me.
Many long days with no communication.
My stored thoughts were keeping me okay. Messages from my friends were keeping me .
Messages from my community keeping me.

More disabled students need to know we are here for each other. Most are alone.

My weeks of beginning there were many tests. Tests that I could not hear or type my answers. Some days I could not use my iPad in class. They said to use neo like alpha smart.
It was different. It was hard.

On times to use my iPad my words were stimming to the people.
I was communicating. This is from my I.E. P.
They do not understand communication.

They need to read Julia Bascom on stimming.
They need to learn about autism from autistic people.
Disability from disabled people.

Spring 2013

ASAN asked me to be part of the PSA for Autism Acceptance Month. Listen UP.
It was a secret.
It was more building more strong thoughts to use when I need.

I stood at the Lincoln Memorial I used the strength of all people fighting for rights.

In April Mary Schuh came to school with me. It was my favorite day. Needing more Mary Schuh here.

It was the only day for free communication.
The only day to show my true intelligence and free participation.
All the answers inside were free to share with the people. It was my favorite day. I answered all.

I answered but my words were interpreted translated.

There is No translation necessary.

Tracy, Larry, Harvey, Pascal, Gerry, and Mary came to Tampa to help me teach the people about acceptance and to presume competence. It is lifes moments of eating and typing together.

Summer 2013

I am tired. I am tired for fighting for rights that are mine. Rights people already fought .
I am tired but I will keep fighting. Together we are fighting.

Supports are necessary not optional.

I can learn. I do learn.

Fighting for access is hard.
Learning is not hard.
The learning I can do.

This is my first time in general education. Same work, same tests. I made an 82 on my Science semester exam. I made an A in World History. C in Science and Language Arts.

All students can learn.

I am hoping that all the autistic kids.
Hoping all disabled not disabled kids look to see the community.

We are here. you are with us. Speak up ., reach out, we are not alone.

Video ‘School and Civil Rights’

Today I read about Martin Luther King.
The worksheet said because of Dr King’s work, the Civil Rights Act of 1964 gave equal rights to all people.
I am a person.
I want these rights.

I want to go to school in my neighborhood.

Why can’t I?

Henry Frost is 13 years old. He is an advocate for inclusive education and human rights, as well as being a pretty awesome human being. To learn more about Henry, visit the ISTANDWITHHENRY Facebook Page or where this post was originally published (Ollibean.com).

The best choice my parents ever made for me : An inclusion success story

By AZ Chapman
This post was originally published at AZ is Amazing. AZ is one of the many young self-advocates that are taking to new media to highlight the benefits of inclusion. I am honored to share her story with you.

So   I  have been hearing multiple times about  the fight parents   need to have  to give their child an inclusive education.  Every time  I hear about this my heart breaks because I know  what the benefits are to being include  and I feel so powerless because I can not anything to fix the system  but hopefully  it will be different in three years  since I am becoming a  special education teacher for now this is all.  I do I hope everyone enjoys the video.  Feel Free to share  just leave a comment first.

AZChapmanAZ Chapman is a young woman that has Cerebral Palsy, Nonverbal Learning Disorder and Anxiety. AZ hopes to be a special education teacher. She has been previously featured on the blog here. She has recently completed a YouTube web series, “Able to  Go to College” in which she gave updates about life as a disabled college student. You can visit her website azisamazing.blogspot.com.  AZ is also a youth leader at I am norm. 

 

Person Centered Planning Empowers Everyone

This post was originally published at MyMarilee.com. I heard this quote not long ago: ”People spend more time planning their family vacations than they do planning for their lives.” I’ve seen some pretty elaborate vacation plans, but I hear a lot less about life plans. A form of life planning is what I refer to…

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Exploring the Parent-Child Dynamic within the IEP Team

Think inclusive… about the IEP process and IEP team from the child’s perspective. Tim Villegas does an excellent job here gathering parental and professional insights on educating students with disabilities. Today I hope to add a new comprehensive layer by discussing the student viewpoint. Disclaimer, rather than providing you with answers my post aims to…

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#TeamInclusion Google+ Hangout #003: How Do We Ensure People With Autism Are Included?

For  this installment of the #TeamInclusion Hangout, I was the sole participant in our discussion. If you want to know more about what I think about autism awareness and/or acceptance check out the video above. Here are the questions I examine.  1. Is there a difference between “awareness” and “acceptance”? 2. Why do you think…

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