Inspiration from Aaron in Alberta - Guest Blog

An update from Aaron Greenwood, from Alberta, Canada, who wrote to the folks at AutCom when they gathered in Milwaukee, Wisconsin in the fall of 2010.  Aaron has autism and does not speak, but types with his Mom's support using Facilitated Communication.  See Aaron's earlier message

Well I am writing again after many years since my last article.  I have changed since then and now I greatly feel it is time to share more of my opinions of autism.  I remember how I shared how my life began with my family loving me for who I was.  And now as I have grown older most definitely that has remained the same.  I dare say they love me more as our journey becomes truly one that is steadfast.  It has been a journey that has been dearly difficult at times, very stressful. 

Freedom greatly falters never when you have a path to follow.  Yes it greatly each day was a time when my family knew that great dedication was needed. Sadness was certain to be our destiny if we did not stay true to our great mission. Never was it an option for my family to feel that my life was to be a life of beast filled nothingness.  I knew that they would most dearly remain my true believers and supporters.  I knew that my life was meant for more than just sitting silent and not contributing to a world that needed most definitely a certain hope and resilience against those who say nonverbal autistics are not worthy of a place in this world.  Really? It assuredly asks the question really we are not worthy? Each day I have thought of this question and I get angry each time that I think of how much we have to contribute certain I am of that.   

It is a crime to let our minds sadly waste away to a point of no return for some.  And then they ask why are they angry? Why do they scream? Why do they dearly run?  I am seeing more and more of my dear friends fight each day to stay sane.  I am boldly saying friends even though I have not met many of you.  It is a crime to hold so many of us in a life that has no purpose.  A life meant to be rich and fulfilling a life that God sadly sadly does not agree with. He did not mean for us to be sitting idle we were meant yes meant to be engaged individuals meant to live a life of purpose.   

Dearly dearly always know that there is a path meant for each person and we are no different because of our autism. It has always been my most passionate purpose to awaken my body.  I know that for many a body that does not listen to a powerful mind is a dear curse.  It has been my experience that a body that is strengthened by the right foods and supplements is a body that can supremely be a person strong in this world.  A world that needs to know that a person with autism allowed to be active in opinions and beliefs is a person that dearly has a great contribution to make to our society.  Was there ever a point to not giving each of us a chance in this world only because you felt that we could not be of any value?  I know that this is a dear reality for sadly many of us and it would be a true miracle if more families would follow a path that my family is on.  It is a path that is very worthwhile and I know would be a path worthwhile for many more.  It is a path that frees all and awesome a life with freedom is.   

I know that a family with a member that has autism is a family that already has much worried existence.  And I know that these worries are a truly difficult place to be in.  Our family has greatly worried and believe me these worries are stressful.  But I also know that our worries have been dearly relieved by a calmer me. I know that a body strengthened by feelings that are positive and not beast filled is a dear opportunity freeing me each day.  Yes, it is a dearly, dearly certain great work path not without its sad times of course.  But also I know that my family has experienced greater peace and true happiness with my new stronger me.  I know reality is not always felt by many as a gift but more of a curse. And I know that for many families that are struggling this is a cursed existence. Not for all I know.  But for those that are struggling yes listen, autism does not need to be a life of hurt and each day could be one full of possibilities.  And I know it may very well seem daunting but it is possible.   

Never feel like it is both cursed and hopeless.  This is not true.  I am living a life that has known hope and sadness and it is more hopeful now more than ever.  I am each day ready to be an advocate and feeling ready for this awesome autism awesome reality.  I know I am really sad to not know many of you but hope that my letter bridges my dear feelings to yours.  I greatly desire a chance to give hope to more people and each opportunity that I have I am truly thankful for.  I really hope that this letter is the beginning of many opportunities for me to share my awesome life and also give hope to families struggling and certainly answer any questions that anyone might have.  Thank you for reading my letter and God Bless each one of you as you search dearly for your purpose.  

Sincerely your friend in autism,

Aaron Greenwood

Shifting Paradigms

I have written before ( http://grandmacharslessonslearned.blogspot.com/2013/07/independence-its-big-deal.html ) about the importance of independent living for those young adults I see on a regular basis.  But the more I think about it, and the more I learn from these friends who "speak" through their typing rather than their voices, the more I realize we need a major shift in how we provide support.

The people working in the adult sector of the disability field are generally very caring and well-intentioned.  They want to do their job and they want to help their clients.  But, unfortunately and all too often, they are not very well-prepared, nor are they given much in the way of direction or support for what they are doing.

Just yesterday, I spent an hour with each of three of my regular typing friends and all three typed words to this effect (actually I think the words were identical each time):  HELP ME LEARN TO LIVE ON MY OWN.   I am seeing this plea more and more frequently - usually a sign to me that I am not really paying attention or giving them enough indication that I really hear what they are trying to tell me.  And so, I reflect . . .

When young students with autism first entered the school systems back in the 1970's, it was common for a large group of professionals to gather to discuss just how to best provide for their unique educational and social/behavioral needs.   I have written extensively on this blog about all I personally learned  along the way, mostly from the students themselves - and of course their parents and families.  Now it's my turn to learn something about adults with autism, and in particular those who do not speak and still need support for just about everything they do in their lives.

Yes, and that's exactly why this at first might appear puzzling.  They DO need help in so many ways - often in areas of self-care, certainly in getting around the community, finding and maintaining a place to live, handling financial matters, and on and on.  What can they possibly mean when they repeat a desire to live on their own?

How fortunate it is that we now have a way to actually ask them for more information.  I am here to share with you what I am learning in hopes that you might keep all of this in mind and help me find ways to change the way we provide support to these individuals when they enter the various programs that exist to help them be successful and happy in life.

What is it they want?  Well, it really should not come as a surprise that they want something meaningful to do each day.  They like having REAL jobs, they like going places and doing things like others their age.  And yes, in spite of what you might have heard about autism, they want to have friends - again, REAL friends, not just people who are paid to spend time with them.   What might come as a surprise to those who don't really know these folks who type is that they also want to keep learning.   The greatest frustration comes from being treated as someone who doesn't know much, or isn't interested in what is going on in the world around them.  They want everyone to know they are intelligent - often HIGHLY intelligent - and they would like to be treated accordingly.  So, if that day job involves shredding papers or washing dishes or stacking shelves at the library, could we please add an extracurricular activity that is more intellectually challenging?  Could we at least discuss the news of the day, read a paper, visit an interesting web site, have a meaningful discussion?  And if their interests and talents are more in line with being an artist, writing poetry, or preparing a presentation for a conference, can we perhaps find ways to help them pursue that as a career rather than some menial, repetitive task?

They want to do as much for themselves as possible and this differs from the care model that many of our workers are familiar with in nursing homes and other settings.  These young people - and older ones too - need help to become just as independent as possible.  We should not be doing things for them that they might be able to do on their own.  We SHOULD be developing the mind set and the programming that will allow them to continue to progress on the road to independence, in every possible aspect of their life.  Ideally, this is what the school programs have been providing up until graduation, and ideally it should not end at age 18 or 21.

I realize this is a huge paradigm shift for most of us, but I can assure you there are many, many young people in our schools today who will benefit if we can make the shift, and will surely suffer if we do not.  It is worth our time, attention, and energy.