Thursday, September 30, 2010

Gaining Momentum

It feels like the pace of my journey is finally beginning to pick up.  I know it's only been a little less than two weeks, but still, up until now, I've had all questions, few contacts and a huge road ahead.  Now, I finally feel I've made some tangible steps.

I just had a phone conversation with Jerusia Chasse the founder of Program Builders in Connecticut and she had some very valuable answers for me as to the educational path I need to take to get where I want to go as well as insight into the world that is autism therapy and what I'm likely to run into along the way.  It's too much to share in the short space of time I have to blog this, but suffice to say, I was ravenous for her answers and can't wait to find a way to repay her for her time.

Also, this coming Tuesday, October 5, 2010, I have an appointment with a coordinator at the local Early Childhood Services Center in my little town in Oregon.  This is the center where my friend enrolled her autistic twin boys when they were first diagnosed.  I'll be looking for more answers and the opportunity to volunteer.  

Hands on experience, here I come!

The Narrow Gate

So, it’s been less than two weeks that I’ve been peeking into this world, and already I’ve met some wonderful and fascinating people.  Already, I’ve learned that a large contingency of higher-functioning autistics do not appreciate the way that Autism Speaks, the brand name charity for autism, delegates the funds it raises, how much it pays its executives and the advertising tactics it uses for fundraising.  (From my brief study, the favored resource for autism advocacy among autistics and their families is ASAN.)  Many autistic adults and teens as well as parents of autistic children are offended by advertising campaigns as well as general attitudes that autism is a disease or something that needs to be cured.  Having grown up with or raised a child with autism, these people recognize that the different way an autistic person sees and experiences the world becomes an inextricable part of that person’s personality.  To demonize autism itself feels like (and arguably is) an attack on the identities of autistic people themselves.

I have to agree after reading a number of accounts, that comparing autism to a fate worse than death or likening it to being stolen out of one’s own body is offensive.  When I read articles like this one about research that could potentially lead to “therapies” that would change the structure or function of an autistic person’s brain, I can see how they would make an older autistic person nervous, not only for him or herself, but for future generations who won’t be old enough to speak for themselves when something like this might be applied.

All that said, I’m not trying to be sensational, and neither are the people whose accounts of this kind of marginalization I’ve read.  They are the first to admit that there are autistics (children and adults) who need coping tools, who need therapy for their autism, who need to learn strategies for living in a world mostly filled with non-autistic (I refuse to say “regular,” because there’s really no such thing as a “regular person”) people.  So, from what I’ve seen so far, it’s not the autistic community being unreasonable in their thinking.  It’s the non-autistic community, and even some who claim to be advocating for autism, who are making questionable claims and inappropriate comparisons about autism.

I’m so glad that I’m starting to enter this world in the manner I’ve chosen, by reaching out to the community first.  I would hate to get swept into the wrong approach by choosing to focus only on the academic side of things.  That’s not to say that the academic world will necessarily favor the autism-as-a-disease outlook.  I have no idea what perspective dominates the academic community focusing on autism, but I’m just happy to be receiving this different kind of education first, so that if and when I do become any type of therapist for children with autism, I’ll be approaching the whole process from the perspective of arming the child with the tools to cope, providing them with the strategies they need to live the best life they can in this world, without stripping them of their childhood or their identity.  That’s the model I want to shoot for.  May God help me in walking that path.

Tuesday, September 28, 2010

Please Help Me Create My Reading List

Thanks to everyone who has responded and I hope to get more responses.  Read the original post below the list.  Post your feedback in the comments.  Tell me what to read, in what order I should read it, what I should take to heart and what I shouldn't and why.  Use the comments section here to guide me and I'll keep a running list of where I am in my reading.

Already Read (0)

Currently Reading (1)

  • Look Me in the Eye - John Alder Robinson

On the List to be Read (2)

  • Let Me Hear Your Voice - Catherine Maurice
  • Raising Brandon - Amalia Starr

I figured I might do well to post this request somewhere a little more permanent than Twitter.  As I'm just beginning my journey toward becoming an advocate and perhaps a therapist for children with autism (and because the earliest I'd be beginning graduate study in this area is this time next year), I wanted to start reading up now while I have the "spare" time.

Can this community help me create my reading list?  I'm looking for, primarily books, but also articles and blogs that will broaden my understanding of the autism spectrum.

So, what should I be reading, please :-)

Thanks, All

Saturday, September 25, 2010

Questions, Questions, Questions

As I mentioned in my last entry, this list of questions will probably grow and change continuously.  Hopefully, I’ll be able to put links on a lot of these as I become able to write entries that outline the answers I’ve found.  I need to find so may resources, but without further ado, here are, in no particular order, the questions I need to answer.

  1. What sort of professions are out there for someone who wants to work with and advocate for children with autism?
  2. What sort certification(s) exist for these professions?
  3. What sort of degree do you need to effectively carry out this work?
  4. What are the best, accredited online schools for the degree I need?
  5. Where can I volunteer to work with autistic children in order to get some hands-on experience?
  6. How much will it cost me to go to school?  What sort of scholarships, grants, etc. are available for my education?
  7. How far can I reach with this new platform and this new life plan.  Can I improve the lives of children and adults with autism beyond my city, beyond my state, beyond the U.S.?
  8. Am I actually good at this?  What proof can I offer?
  9. What are my ongoing goals with all this?
  10. What are the ways that I can use my blog, my website, my twitter account to help more people?
  11. Will this blog and website serve more people going through the same processes I am, or do I want to focus more on serving children and adults dealing with autism themselves?  Can I do both?

Yes, there will be more questions.  If you can think of some more I should be asking, please comment.  Thanks for reading.

How I Plan to Use this Blog

I plan to use this blog and the website I’ve created in a number of ways.

  • I will document the steps I take in this process of becoming a certified ABA therapist (or whatever I end up being.)
  • I will list the resources I find and try to make the website and this blog into a gateway for others who might seek to follow the same path I am.
  • I will ask for advice and suggestions from all who follow me in this journey.  I’m taking a wild guess that the community advocating for people with autism is very much alive and kicking online.  This will be my touch point in that community.
  • Eventually, once I get my bearings, I hope to use these sites to further the causes of autism awareness and advocacy.  I’m not positive what that will look like, but that’s the plan.

So there you have it.  That’s why I’m doing all of this.  Probably for now, many coming entries may be pretty short while I document the baby steps I take.  An entire entry might consist of “Attended volunteer training for two hours today.  Completed homework for Intro to Psychology class.”  Then again, I’ve never been known for being concise ;-)

Something else I’d like to do before I leave this entry is outline my current expectations of a time line for all this.  This is what I imagine I'll be doing over the next few years.

Oct. – Dec. 2010: Research and answer as many questions about what it takes to move in this life direction as possible.  Look into various online schools and try to find volunteer opportunities in order to get some hands-on experience

Jan. – Aug., 2011: File FAFSA in January.  Continue researching questions and checking into schools.  File for admission to and financial aid from a short list of online schools.  Continue to volunteer and try to get as much varied, hands-on experience as possible.

Sept. 2011 – May 2013: Complete a master’s degree online.  Continue to research, volunteer and connect with the autism advocacy community.  (Likely lose my mind trying to be a parent, student, employee and volunteer all at once ;-P)

201?: Gain certification as an ABA therapist (or whatever I decide to end up being.  This could change.  I imagine a LOT will change over the next few years.)

My next entry is one that will probably be revised 100 times over, and that is the questions I have that I need to research.  Please feel free to add to these.  If I like what I see in the comments, I’ll edit it into the entry itself.

Until next time…

Friday, September 24, 2010

The Adventure Begins

It’s Thursday, September 23, 2010 and my life seems completely knew.   For the last several days, I’ve been riding an endorphin high rivaled only by the one I felt when my husband and I first moved to Southern Oregon nearly four and a half years ago.  Many, many of my friends from all seasons of my life think this is a good idea, agree with me that this is, indeed, my calling.

On Monday, after my epiphany, I wrote a Facebook message to a large group of people who had responded to an earlier post about wanting to change my life.  In the message on Monday, I poured out my realization.  I had described my weeks of prayer.   I listed off the questions I had already come up with for which I would need to now search for answers, and I tried to explain how this seemingly out-of-the-blue conclusion had come about from reading that catalyst CNN article.

More people than I ever would have guessed wrote back to support my inspiration and new ambition.  A few were more cautious in their enthusiasm.  My pragmatic aunt wanted to make sure this was something I didn’t mind looking hard into before I jumped in with both feet and my cousin, herself the mother of an autistic child and one of the people to whom I’d opened myself long before trusting almost anyone else, wanted to get answers to some of her own unique worries including, “Are you logical enough for this, because autistic children often think very linearly?” (I always got great scores on logic tests.)  “Do you think you’re capable of compartmentalizing your emotions well enough to keep from driving everyone in your personal life crazy with the baggage you will otherwise bring home with you?” (Hmm, well, I know I’m not good at sparing my husband from every detail of my work triumphs and woes, but other than him…)  “Have you thought about being an art therapist specializing in autism instead of an ABA therapist?”  (No, but I’ll add it to my research list.)

She and I actually talked on the phone on Wednesday while I took my break in my car.  I had let my honesty show a little more than usual and had decided to send her an e-mail that I imagine she could have written with all her worries and reservations about this new idea of mine.  God bless her!  She said she laughed very hard while reading it.

My aunt in Louisiana has written me a series of heartfelt responses.  Turns out her sister has an autistic daughter (I never knew that until now.) and she feels, not only that I would be fantastic for this work, but wants to point out that I can also become an autism advocate and help people in my area and across the country.  Her sister has wanted to write a book and here a writer (I) am showing interest in this area.  Perhaps I can collaborate?  Yes, perhaps I can!

Last night, I created a shell website and purchased, and now I am pointing that URL to the shell in order to get an e-mail address to use to start my new blog.  Responses are still pouring in on e-mail and Facebook from those with whom I’ve shared this idea.  So many positive responses!  It seems clearer and clearer that this is where I’m supposed to go.  I find a response now from a contact I received from my friend Nikki who has two autistic boys.  She gave me the name of the school, its website and her contact there where her two boys spent their pre-school days getting the therapy and attention they needed.  The e-mail response from the person at the school is positive.  She would like to meet with me and has plenty of volunteer opportunities for me.  I call the number in the e-mail immediately and end up leaving a message for her.

From here on in, the real research is about to begin.

The Vision

It’s Monday, September 20, 2010 and I’m at the end of my 45 minute commute into work.  Over the weekend, I predictably woke up in the middle of the night more than once feeling rotten about my job situation.  Because the good heart in me hasn’t entirely fallen prey to this world, I feel really bad, not only because my performance has suffered at work due to my feelings of being underestimated and under-challenged, but also because I can’t come clean to anyone there about it.  In this economy, it’s downright foolish to make waves at your job.  How could they ever understand that it wasn’t jealousy, but a change in my heart that has made me feel this way?  Even if they could understand, what could they possibly do except let me go, and neither my family nor I can afford that.  I have a 15 month old son, for goodness sake!

Suddenly, my mind returns to the article I read on Friday and the brief research I had done a few hours after reading it to find out what it takes to become a certified ABA Therapist (a master’s degree for one).  Suddenly, the sun shining in my face seems incredibly bright as if it’s shining all the way through my eyes into the back of my head and I feel the proverbial scales fall from my eyes.  God has answered me!  This is my path!  I am not supposed to get any one of the dozens of jobs I’ve applied for over the past few months.  I’m, instantaneously, no longer surprised or even sad that I haven’t been selected for either of the jobs for which I interviewed over the summer.  The new career path selected for me is newer than even I had imagined.  I am not supposed to continue on in the advertising/marketing world.  I’m not even supposed to be making my money from writing.  No, what I am supposed to do with my life is become an ABA therapist and help autistic children and their parents who live in this beautiful Rogue Valley in Oregon.

I realize I’m driving with a huge, dumb smile on my face.  I realize I haven’t felt this happy on this commute EVER.  I realize I haven’t had this many endorphins running through my brain since my husband and I moved out here in 2006 with fresh (though ultimately doomed) dreams in our heads.  All my anxiety about my current job has fallen away.  All desire to escape the office I’m driving toward has vanished.  In fact, I’m newly motivated to be the best employee for my current company as I can for as long as it takes to get the education I need to make this career change.  I realize I’ve taken from my employer and I want to give it all back now.  With the realization of what a large gift I’ve just been given, clarity of life purpose, I feel I could give absolutely anything to anyone right now and still never want again.  Thank you, God!

Thursday, September 23, 2010

The Dawn

It’s Friday afternoon, September 17, 2010.  I’m standing in front of the mirror in the tiny, one-person restroom at the company where I’ve worked for the past two years.  The reflection, mine, staring back at me looks sad, stressed out, pleading.  I look up, momentarily breaking eye contact with myself, toward the understood direction of God.  Where is my answer? I want to shout, but I try to be more polite with my thoughts.  Dear Lord, I need a new job!  I cannot perform to my fullest potential here.  I cannot do my work for your greater glory.  Please Lord, show me your will for my career!

It’s what I’ve been praying for weeks, months now, ever since the girl in my department, who started work here two weeks after I did, got promoted over me a few months ago.  That was when I realized I was underestimated here.  That’s when I realized, I was under-challenged.  That’s when I realized I was unhappy.

Was the promotion fair?  Sure it was.  Gina (we’ll call her) has been working faithfully here every day while I’ve been out for eight months last year on maternity leave.  She’s mastered the new system that has come to fruition while I was gone giving birth to and caring for my newborn son.  She’s taken on the biggest burden in our department while the others of us have been in and out doing life stuff.  Gina is on top professionally.  She clearly has a passion for this very same work for which I can no longer find excitement.  She deserves to be recognized, thanked, promoted.

No, it’s not jealousy (okay, maybe a little, but not for the most part) that’s driving me to feel I am underutilized here.  It’s something deeper.  At previous in-house jobs, I’ve had much broader, challenging, varied duties.  At most other jobs, I’ve been a lone wolf in my department.  And at most other jobs, I’ve not been a mom, not been over 30, not been a member of a church that has finally brought my husband and me close enough to want to spend our evenings together.  I am a different person than I have ever  been before, and this job I hold now, where I’ve come to realize I can’t work to my potential, can’t work for me anymore either.

I leave the bathroom and return to my desk, clicking on in order to continue to avoid the tedious work awaiting my attention.  An article titled “Moving Out of State to get Autism Treatment” catches my eye and I click the link for distraction’s sake.  The story by Paul Frysh about Wendy Radcliff and her family draws me in, and I read how she and her husband fought with insurance companies in West Virginia to try and secure coverage for their autistic son’s Applied Behavior Analysis therapy, how they eventually had to move out of West Virginia to Florida where autism is protected by law from discrimination by insurance companies. 

One of the family’s plights described in the article is the difficulty finding an ABA therapist in West Virginia.  Radcliffe is quoted as saying, "In West Virginia, because insurance will not cover ABA, it's very difficult to find people that know and are trained in how to do ABA -- they're just not available and around because of that,"  As I read this, I begin to wonder, what sort of resources are available in my community of Grants Pass, Oregon.  We’re a relatively small town of about 30,000.  While we do have a Wal-Mart, I have no idea what resources would be available to a parent of an autistic child.

I finish reading the article and get back to work.  Unbeknownst to me, a seed has just been planted.  Unbeknownst to me, God has just given me the answer to the questions I’ve be crying out to him for the last few months.