Thursday, August 26, 2010

Ryan's Communication Study & Justin's Middle School Orientation - Part 2

Previously on "Aspierations - Come as you are... Let Your Light Shine!"...

1. It was hot.  Karen was grouchy about it.  Not much new here...

2. The Krejcha family attended a "Back To School" roundtable discussion at the Arc of Clark County Pride for Kids Family Therapy Center hosted by the Autism Society of Southwest WA and got some valuable resources to help create a better school year for their two sons.

3. Ryan was taken to Beaverton, OR by his Mom & Dad to see if he qualified as a candidate for an Autism and Communications Research study with the Oregon Science & Health University.

4. Justin attended Middle School Orientation Part 1 and Part 2.  He had the opportunity to get his class schedule for the year and meet many teachers. Ryan had the opportunity to practice his potty skills and voice volume control.  (He still needs practice.)

5. John wrote about the week so far from his perspective and shared some of Ryan's comedy gold in his blog from last night, "One Week Until We Have A Middle Schooler."  At the time I linked to his blog last night, I had not read it.  I did read it after I finished mine.  There is a section in the middle where John shares a tale about a little side adventure he experienced with Ryan and then writes, "By the Way, if you recently heard a large laughter go up, that was Karen reading this for the first time, I did not tell her of this tale."

He was right.  I did laugh out loud.  I know that my laughter was socially inappropriate but from life experience and my own maternal mishaps I could totally visualize the whole thing happening with Ryan as John described.  In fact I'm laughing again as I visualize it.  Understandably, John was a bit pissed at the whole situation and if you read his anecdote, you'll know why.  From the orifices of babes...

So... now that I gave you a couple highlights of my previous blog, why don't I get to the meat and potatoes of today's entry?  

The "Back To School" roundtable gave us a chance to get out, listen to, interact with and learn from other members in the Greater Clark County Autism and Asperger's community.  We were so thankful that childcare was provided during the meeting otherwise we likely wouldn't have been in a position to attend.  Justin did a great job watching out for Ryan. The boys got a chance to play outside, get some fresh air, only two new ouchies needed to bandaged and I counted only two bathroom breaks where I could hear Ryan proclaim details of "having to go" and Justin running behind trying to make sure he was okay and not bolting from the building.  (This of course happened while we were quietly and respectfully sitting within the meeting....)


Topics discussed at the meeting included IEPs and customized goals, creative ways to get and stay involved with your child's teachers and other staff your child interacts with, social stories, inclusion, Washington state education laws and various programs and resources available in the community for children, adults and families with special needs.


I will be putting up a special page on my blog that just contains resources in the near future  It will include the Northwest but also the USA and around the globe.  For now, here's just a few Clark County based resources for any Vancouver, WA - Portland Metro based visitors.


When the subject of social stories came up, Carole Kaulitz, co-author of the book, "Learning With A Visual Brain in an Auditory World" and a Speech Language Pathologist and Autism Consultant passed around her book and it looks like a great one to check out if you want to learn more about this topic.

Darla Helt, an amazing Autism advocate (I see her at almost every single type of support group meeting I've ever been to in WA) spoke about the Parent to Parent Program and Parent Coalition Program of Clark County.  If you are in the Vancouver / Clark County area of Washington state and are looking to hook into a support system for people with disabilities and their families, this incredibly dedicated mother and grandmother has many positive resources regarding how to navigate the system and connect with other families who share similar experiences in parenting a child / adult child with a developmental disability or chronic health condition.  If you are an information junkie or Google goddess like me, get on her email list and you will get quite a few updates each week. For more information, contact Darla at 360-759-4917 x 107 or email her at DarlaH@arcofclarkcounty.org.

Jody Ramey mentioned that the Autism Society of Oregon was having a conference called "Believe In Possibilities - Navigating Life as an Adult with Autism Spectrum Disorder".  It is October 1st at the Oregon Convention Center in Portland, OR from 7:30 a.m. - 4:45 p.m.  Lee Grossman, President/CEO of the Autism Society of America (now called Autism America) will be the keynote speaker.  There will also be 8 different break-out sessions.  You can get information at www.oregonautism.com. It's only $5 if you are a person with ASD, $40 if you're a parent or caregiver and $75 if you're a professional.  I so want to go and hope it will work out for me.  I don't see that childcare is available and it's a Friday so both kids have school.  Ugh... John wouldn't want me to go without him.  Maybe I can figure something out.

Jody also spoke on a separate note about a developing project called the "Inclusion Institute".  Their mission is to provide access to information (print media, non-print media and live instruction) and to "promote full and complete living for autistic people and those with related hidden disabilities, to promote inclusive dance practices for people with and without disabilities and to promote the study and understanding of successful people with disabilities.  On the pamphlet that was passed out, he said he can be reached at inclusion.institute@gmail.com.

If in Washington, check out PAVE (Parents are Vital In Education), a parent directed organization that works with families, individuals with disabilities, professionals and community members in all walks of life.

If your children are going to school in Washington state, check out the Special Education PTSA meeting in Vancouver monthly.  They are the first special education PTA in the state and one of their main goals is to help reduce isolation among families.

When I heard that I felt tears welling up.  I am well aware of "Autism Isolation Syndrome" having experienced it myself on a regular basis despite my best efforts to try to break free from the invisible chains that often bind me.  Being on the autism spectrum myself adds an extra level of complexity especially when it comes to disclosing to others that one or both of our sons is on the spectrum.  (More about this later!)

Rebecca Sperber writes a terrific article that defines and explains the syndrome as well as giving some useful tips to consider as you try to break free.  If you are have a relationship with anyone on the autism spectrum as I would suspect most people coming here to this blog would be, it's worth a few minutes to read her online article.  (If you do, please let me know in the comments section what you think.  Thanks!)

The final part of the "Back To School" roundtable meeting was left for networking.  Mask on, mask off... wish I could keep it off more often but the social scripts I grew up memorizing are so second nature to me that I immediately jump into "how it is proper and socially appropriate to be polite and interact with other people I don't know" mode.

If you met me in person and didn't know I was on the spectrum and you weren't on the spectrum yourself (because I think a lot of us out there like myself have an Aspie sort of radar or magnet inside of us), I would bet you couldn't tell I'm an Aspie.  You might think I'm a little quirky or quiet but you would very unlikely catch anything in my voice and you'd find my facial expressions appropriate, especially if I were focusing on this being the case.  Now if I told you subtle things to watch for, that might be different.  People are oftentimes so focused with how they sound, look and interact that they're really not doing all that great a job of listening, watching, analyzing, checking micro-expressions and tuning in to what the person they are with are saying or doing.

Anyway.... that brings me to # 4 on today's list, autism research!  After yesterday's intake session which lasted about 2 hours, we weren't sure what the results would be but today we heard that Ryan was accepted into the the Autism and Communication Research study at the Oregon Health & Science University.  Hooray!  The purpose of the study is to explore the differences in communication, social skills and mental abilities of typically developing children, children with language disorders and children with autism and related disorders.

A special focus in the study will be on prosody, or the melody, timing and rhythm of speech.  Expressive prosody problems involve speech that is stilted or overly melodic, or too slow or too loud.  Receptive prosody problems involve weak understanding of the meaning, intent and feelings of others.  Prosody difficulties for children like Ryan will be identified and the impact on his communicative and social competence will be explored.  (We know that Ryan and Justin both have expressive and receptive prosody issues.) After the study there will be an opportunity for us to receive information on Ryan's performances on all tests, information on the study's results and at some point down the road, a potential treatment program will be set up to use computer games to improve communication skills.

I will keep you updated on how it goes. I need to keep the actual details of the study confidential but I will be able to talk in generalities. For example, I know that Ryan will have the chance to play on a talking computer and I am sure he will love this!


Since it's getting late and since this particular entry is already getting lengthy, I'm going to save talk about Justin's Middle School Orientation for Friday's blog.  We'll make it Part 3.  It really deserves its own entry because there is so much to say and I can almost guarantee you that if you come back and read through it the whole way, you'll laugh at least once.  Those with a sense of humor like mine may need Depends...  I'm such a tease...

Thanks again to my Aspierations amigo who stuck up for me earlier today.  I've been thinking about what you wrote. You know who you are and I totally appreciate it. Hugs to you.  I'm sorry that I needed to delete the entire thread of comments you commented on.  I'm not into censorship but I needed to protect the kiddos. Please comment again soon! I so like having you here!

The rest of you too!  :-)

Hope you all have an awesome Friday!
Karen

No comments:

Post a Comment