Open Letter To ASHA

ASHA,

I have an ethical concern regarding your organization.

I am the proud parent of a non-speaking autistic American citizen.  Our child was diagnosed at 2 1/2 years old.  She began daily ABA instruction and received it for 6 years.  ABA and PECS did not improve her ability to communicate beyond very basic needs.

Since beginning letter board instruction our daughter has gone from basic Pre-K type instruction to at grade level (4) and above.  She is writing poetry in her spare time, doing advanced Math, and made the honor roll.  She is in general education classes and has neurotypical friends.  She types with her aide at school and with family members at home.  She is free of a life of silence and she’s not going back.  She is still very much autistic and we value and celebrate that fact.

An individual accessing his or her preferred communication method should be recognized as a fundamental human right.  Retract your statements immediately and issue an apology to the American citizens who type to talk.
 
I’m writing to encourage your members with a sense of morality to speak up.  Perhaps you are enduring just a small sense of what imposed silence feels like.  It’s your time to stand up to the bullies in your organization.  The genie is out of the bottle.  This generation of typers are intelligent, supported, and mobilized.  There is no stopping the truth.
 
To ask students to abandon their letter boards and keyboards is the equivalent of dumping students out of wheelchairs and leaving them on the steps of their schools.  It is not only unfair, but it is cruel and immoral.  
 
Support the disabled and their right to type or forever be remembered as an organization of oppression.  
 
In Solidarity With Non-Speakers Everywhere,
 
Tobi Stanton Stewart

1913

We American deaf are now facing bad times for our schools. False prophets are now appearing, announcing to the public that our American means of teaching the deaf are all wrong. These men have tried to educate the public and make them believe that the oral method is really the one best means of educating the deaf. But we American deaf know, the French deaf know, the German deaf know that in truth, the oral method is the worst. A new race of pharaohs that knew not Joseph is taking over the land and many of our American schools. They do not understand signs for they cannot sign. They proclaim that signs are worthless and of no help to the deaf. Enemies of the sign language, they are enemies of the true welfare of the deaf. We must use our films to pass on the beauty of the signs we have now. As long as we have deaf people on earth, we will have signs. And as long as we have our films, we can preserve signs in their old purity. It is my hope that we will all love and guard our beautiful sign language as the noblest gift God has given to deaf people.”George W. Veditz, “The Preservation of the Sign Language,” 1913, (translated from ASL by Carol Padden and Eric Malzkuhn)

WHY I SHARE

If you have a family member who is newly diagnosed and you have found your way to this hub: WELCOME

Prepare to let go of what you thought Autism was.

We encourage you to celebrate your Autistic family member.

My daughter encourages me to share. She is the inspiration and support for the work I do. When I’d rather stay home and watch Bravo she sends me out into the world to teach people. I love the word “autistic”the way I love words like “creativity” and “sunshine”. It conjures images of beauty to me. My daughter tells me how challenging things can be on the spectrum. When your body and actions don’t mimic what you are thinking you are often misunderstood. If you lack access to communication you can be overwhelmed with isolation. She also explains to me that with support, understanding, modifications and INCLUSION life is full and wonderful. I’m not autistic and limited by my neurotypical brain. However, I will march with the community toward their human rights being protected. Autism Acceptance is for every month, every hour, every minute, every second of life on this glorious planet. The God of Heaven invited us ALL to this party. So please make room at the table for some of the coolest people He ever created. ✌🏻

Receive the Call

If you keep hearing about RPM – it is no accident.  If you found your way to my blog – no coincidence.  Receive the call.  Help your loved on to communicate.  Learn all you can about Rapid Prompting Method.  This is Lisa & her son Philip.  You can find them at Hope RPM in Williamsville, New York.   Lisa is a Soma trained RPM provider here in WNY.  She is the real deal.  She found a way to reach her son and now has become a teacher of this method to help other families.  I’m grateful every day that God sent these two people to our lives.

Free Meditation At Creative Wellness

So excited to be offering a free meditation for caregivers at Creative Wellness in East Aurora.  The guided meditation will be at 7:00pm on Tuesday, January 30th.

Restorative Guided Meditation For Caregivers

Tuesday January 30th

Tuesday March 6th

Tuesday April 10th

Tuesday May 15th

7:00-7:30pm

Led by Tobi Stewart

Caregiver burnout is defined as, “a state of physical, emotional, and mental exhaustion. Caregivers who are burned out may experience fatigue, stress, anxiety, and depression.”

An effective antidote to caregiver burnout is meditation. Meditation is proven to reduce stress, control anxiety, and promote emotional health.

Come to a guided meditation, in a supportive circle, to soothe caregiver burnout and replenish your spirit. The Creative Wellness Meditation Room is a beautiful, serene space where you will be led in a restorative meditation by Tobi Stewart, a certified meditation teacher and caregiver stress relief expert.

Cost: donation

Pre-registration REQUESTED

Here’s the link to register!

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Morning Ritual

My morning ritual consists of lighting a candle.  I’ve done this for years now.  Some mornings I do yoga and meditate prior to this.   Some days its just meditation.  Some days its a struggle to make a cup of tea and not fall over from fatigue.

Every day is different, but the candle remains constant.

My paternal grandmother was born Mary Margaret Murphy to an affluent hotel owner in Quebec.  She and her two sisters had music and French lessons.  They went to private schools and wore fur coats.  Her life was somewhat idyllic until she married my Grandfather.

I’m not throwing you under the bus Grandpa, but serving in World War 2 left you scarred in more ways than one.  Life with you wasn’t easy until you quit drinking.  There were difficult years.

My Grandmother was an optimist.  She was a survivor, a gifted musician, and an empath.  She loved quotes and words the way that I do.  To this day I still find her notations and quotes inside of sheet music and notebooks.

One of her favorite expressions was that “It is better to light one candle than to curse the darkness.”  This is an incantation she used again and again to illuminate a positive path.

It is the incantation I recite every day when I strike the match that lights my morning candle.  My prayers, intention settings, and practices may change but the quote is a constant.  It is how I have chosen to live.

Where there is darkness let me be light.

Through no power of my own I open myself up to be a conduit of the light of the universe.  Call it source.  Call it Jesus.  Call it what you want to.  Call on it and it will replenish your soul and heal you.

You can bemoan your fate and circumstances all day long.  Or you can decide to do one small kind act toward yourself or another.  Think of how one small candle can pour warmth and light into a void.

Be gentle with yourself today.  If you string enough of those days together, lighting a candle for your own self-care and wellness, someday in the future you will find that you will be that candle for someone else.

The light shines in the darkness, and the darkness can never extinguish it. – John 1:5

Happy Winter Solstice.  Merry Christmas.

 

 

 

 

MORE SOON

Getting together resources for disability parents.  Contemplative practices ARE accessible to you!

 

Also…….

RPM support group coming to the south towns this month!

Good things coming.

Fire

There is a little woman in Austin, Texas who has the heart of a lion.  She is the strong person who would not quit until she unlocked the gorgeous mind of her son, Tito.  Tito was a non-speaking autistic that had a treasure trove of wisdom locked within him.  His mother Soma developed RPM. (Rapid Prompting Method)

RPM is what gave voice to my daughter.

I believe RPM is to a non-speaking autistic as sign language is to a deaf person.  I believe a letter board is as crucial as a wheelchair.

I know non-speaking autistics are bright people locked inside bodies that won’t obey them.  I know we must respect and celebrate their diversity.

The path to get to these beliefs and knowledge was a 5 year journey.  I am not so pompous or self-congratulatory as to tell you this was easy.  I will tell you that there was an ember inside of me that believed in my daughter.  This ember has gown into a burning fire.  This fire has obliterated doctors, teachers, and therapists who preached a litany of pessimism.

I am an advocate.  I am a mother.

I thank God every day for Soma.

I thank Soma every day for being so brilliant.

I thank my daughter every day for being the strongest person I will ever know. Read More