July Newsletter

REACH for a Difference e-News

Map to Autism Spectrum Consortium Project – Road Resources

July, 2012                                                                                                                                    Vol. 2, No. 7

I.  Calendar Events

1.  REACH for a Difference monthly family support group meets on the first Tuesday of every month in the United Way facility located at 249 Cypress Street, Abilene, Texas, at 6:00 P.M.

 

REACH is an organization dedicated to hosting an ongoing forum (I call it “A Conversation”) to discuss the issues confronting individuals and families on the autism spectrum.  We at REACH understand the difficulties and frustrations that arise when families are attempting to access and thoughtfully participate in provider services for their family members.  Our present goals are to document the desires, wishes, and needs of families on the spectrum and with that information develop a road map to those resources offering services.  Where resources are lacking, we at REACH hope to be a part of the process to help fill in the gaps with and through present institutions and agencies to help formulate and implement useful services that address those needs.

REACH members are comprised of parents, professionals, and interested community members.  We are presently inviting individuals and parents of those on the spectrum to begin having conversations with us so that we may document more specifically the needs of families and bind ourselves together for support and family development.

2.   REHAB (West Texas Rehabilitation Center) Family Support Group- This group meets every 3rd Tuesday at 6:30 to 7:30 p.m. in the WTRC Boardroom, 4601 Hartford, and Abilene, Texas.  Parking is provided in back.

3.  King David’s Kids – This a parents support group that meets at Highland Church of Christ the 1st and 3rd Tuesdays every month from 6:00 p.m. until 7:30 p.m.  You may leave a message at 325 672 8837.  This telephone in manned from 4:00 p. m. until 6:00 p.m. 

4.  Workshop presented by Keri Steiner of the PEN Project sponsored by REACH for a Difference

REACH for a Difference Monthly Meeting July 3, 2012

Providing support & education to families on the Autism spectrum.

July 3, 2012, 6:00 – 7:30 pm, United Way Building, 249 Cypress Street

Every Month the First Tuesday

Learn to Improve the Outcome of ARD Meeting

We empower parents ~ Parents empower each other!

Presented by the PEN Project, Region 14 & 15 Coordinator Kerry Steiner

1000 Main Street, Suite 701, Lubbock, TX 79401

·         This workshop will help you to know your rights and your child's rights regarding their education.

·         Does your child have a strong, measureable IEP that ensures they succeed in school?

·         Do you know your options if you want services for your child and the school say No?

·          Texas is the only state to offer 11 additional IEP Services if the child has Autism?

·         Who can you turn to for help with an ARD meeting?

·          

The PEN Project on Facebook, www.PartnersTX.org,  ksteinerpen@sbcglobal.net

         Kerry Steiner at 877 762-1435 begin_of_the_skype_highlighting            877 762-1435      end_of_the_skype_highlighting or Cell at 317 370-6781 begin_of_the_skype_highlighting            317 370-6781      end_of_the_skype_highlighting

A note from Kerry ~  I know you all have demanding schedules and cannot always attend our workshops, so I would like to offer you an option to get the information in a one-on-one setting! I will meet with you at a time and place that works for your schedule. Most workshops are under an hour and you will leave with a wealth of information that will help you understand IDEA, IEPs, ARD meetings, Related Services and collaborating better with the school staff. Below is a list of available workshops so if you see something you'd like more information about, please let me know.

             *ABC’s of IFSPs (Individualized Family Service Plan)

*Autism

*Autism Supplements

            *Communication Skills                                              

            *Contents of the IEP

            *Is Your Child a Target of Bullying?

            *Overview of Procedural Safeguards

*Positive Behavior Interventions

            *Related Services (services like speech therapy, physical therapy and occupational therapy)

            *Top 10 Basics of Special Education

            *Transition from ECI to Public School (understanding part B and part C of IDEA)

            *Transition to Adulthood

5.   The Legacy Complex – is a new all-inclusive therapy center in Abilene, Texas specializing in equine-assisted therapy. Along with specialized and licensed counselors, the special horses are empathetic to the people they help in the individual healing process. Equine-assisted therapy is multi-faceted in its reach and can be used on all-ages and disabilities, and especially those with autism. Equine-therapy assists autistic patients in their social skills, balance and control issues. Great success has been seen with autistic children working with horses in therapy sessions, and we look forward to partnering with REACH to assist autistic children in the Big Country. The Legacy Complex is located at 4301 North Danville Drive across from KTXS News on HWY 83; for more information visit our website www.legacycomplex.org or find us on Facebook as The Legacy Complex or twitter @legacycomplex.

6.  The Abilene free summer lunch service - for children under 18 will be provided at the Alliance for Women & Children, 1350 North Tenth Street, starting June 12, Monday through Friday from 11:30 to 12:30. The service is offered in partnership with AISD.   Call the Alliance at 325-677 -5321.
                                                 

7.  Tennis for Autism – A program by Casey Chapa will begin with a free session on July 30 from 5:30-6:15. A 6- week program will follow August 6^th 5:50-6:00pm. The cost for the six week program will be $60 and if you cannot pay, you can talk to me and I will work with you. However, if I'm losing money by doing so, I won’t be able to continue so for very long, so I am just asking for people to be honest about what they can and cannot afford so that this program can grow.  casey.uspta@gmail.com.            
                      

8.  Linda Sikes is starting a new session of Paws for People at 6 p.m. July 9, 2012 at First Baptist Church University Place.  Come learn how your dog can become a certified therapy dog that would visit, listen, and love homebound church members and others (including anyone on the autism spectrum).  The possibilities are limitless.  Meeting times are July 9, 16, 23, 30, August 6 and 13.  You can join this ministry by calling Linda Sikes at 325 677-1013 (home) or 325 725-1741 (cell).

II. The Great Debate -by Sara Collins ~ President/CEO      

We recently became aware that some of the language used in previous REACH e-letters was offensive and discouraging to some readers. It seems that major competing distinctions are being made by the autism community in the use of words to characterize and give meaning to the various constructs surrounding autism.  Our initial thought was not to engage in these kinds of debates, politics and such issues in our newsletters. There are so many more important and practical activities that we would rather participate in with families and individuals on the spectrum, such as, the sharing of information services, locating resources, and providing educational opportunities.  On second thought, however, it is a conversation that is taking place among those interested in families and individuals on the spectrum, so we have decided to share with you a cross-section of that discussion.  You, the reader, then will have the opportunity to make an informed choice concerning your beliefs on this matter.  We have asked several individuals with different perspectives to write an article or provide information concerning this matter.

The conversation surrounds the use of language when referring to an individual that has been diagnosed with a disability.  A quick review of the literature reveals a heated debate, which we at REACH, was not aware of. In this debate the question is about how to best speak or write about an individual that has been diagnosed with ASD. Much to our surprise we identified four different prevalent views. One view point comes primarily from the individual on the spectrum, the second is often generated by the parent of an individual on the spectrum, the third is generated by professionals that work and relate to individuals with autistic characteristics, and the last is comprised of those who have no strong opinion, either way. Each group argues that its language most accurately defines a useful and respectful identification of individual diagnosed with ASD, while possibly viewing other language variations as disrespectful.  It is our position at REACH that we never wish to degrade anyone, especially those persons with a disability, always pledging to use our words responsibly so as to communicate accurate meaning with respect.

 We share the view of those that are not offended by the various forms of language use by others. We choose not to select sides on this issue, because at the end of the debate all views want the same thing; to give the utmost respect and dignity to everyone.  If one thinks about it a bit, any idea expressed, is just an individual’s opinion and nothing more.  Of course, a thoughtful process often guides us to more useful opinions, resulting in more favorable out comes.  Knee jerk reactions and emotional responding usually result in creating fear and distrust resulting in emotional cut-off.  REACH is about having conversations that foster unity, paired with action, and we welcome any conversations, questions or concerns that promote such ends. We would like to invite once again, especially those of you that feel strongly and passionately about issues regarding the autism spectrum to come be a part of the processes at Reach sharing and teaching your skills, knowledge and information.  This debate has enlightened us in several ways. What is apparent in this conversation is that whatever position is chosen, the opposing critics will often become reactively anxious. Our position is expressed best through a children’s story called The Little Red Hen, which helps us make sense out of this important conversation.   

Sara Collins & Shelby Weatherford    http://youtu.be/smspKuKqt5c                                           

III.  John Mark McDonald - Mark McDonald is an advocate for people with autism who specializes in increasing understanding between those on the spectrum and those who are not. He is both a person with Asperger's type autism and the father of two children on the spectrum. He is currently in the process of setting up a website to help those on the spectrum as well as those affected by it. He is also trying to set up an effective advocacy group for college students on the spectrum in the Abilene area. If you have any questions or comments on the above article or any other topic relating to autism, you may contact him at Scintor@aol.com or (951) 850-7284

Words are Powerful Tools –by John Mark McDonald ~  University Student Coordinator

As with any tool, they are not inherently good or bad. It all depends on how they are used. Any particular phrase can be used to help or to harm. I have watched a word or phrase that was meant to be helpful or neutral become an insult more than once in my lifetime. It seems like the average 8 year old can turn any word of phrase into an insult with just a little verbal twist and flick.

So when I see people drawing lines and taking sides over words, I tend to sigh to myself and shake my head sadly. As a writer I know just how powerful words can be. On the other hand, as on observer of the human condition, I know just how quickly meanings can change. There is no such thing as a safe word that is inherently good and respectful and there is no such thing as a word that is inherently bad or disrespectful. If you don't believe me, look at how easily and playfully the black community uses the word nigger among themselves. The problem is not the word, but with who uses it and how.

I urge you to think about this before you draw a line in the sand about a particular word or phrase. The important thing is how you treat a person. Words are only a tool in doing so.

IV.  People First Describing Language - People with Disabilities Texas Counsel for Developmental Disabilities   http://www.txddc.state.tx.us/resources/publications/pfanguage.asp . handicapped parking, bathrooms, etc. V. . A Perspective Extracted From a Blog- By Kim Wombles           "Miss Wombles, ~ PERSON first language. Learn about it. This is the first clue that indicates to me that you are not equipped to have this type of discussion. --part of a new comment on a two-year-old post." The post, in itself, and the remainder of the person's comment aren't what's important here. Plenty of folks have tackled this issue of person-first language. Lydia of Autistic Hoya has done so several times. Stuart Duncan has covered it. I'm pretty sure there are few long-term bloggers in autism-land who haven't handled this issue. As part of my master's in psychology, APA strongly insisted on person-first language, which in a ninety-page thesis can get incredibly tedious. But even the APA has backed away from that insistence in its latest update. "Although you should avoid labeling whenever possible, it is sometimes difficult to accurately account for the identity of your research population or individual participants without using language that can be read as biased. Making adjustments in how you use identifiers and other linguistic categories can improve the clarity of your writing and minimize the likelihood of offending your readers. In general, you should call people what they prefer to be called, especially when dealing with race and ethnicity. But sometimes the common conventions of language inadvertently contain biases towards certain populations - e.g. using "normal" in contrast to someone identified as "disabled." Therefore, you should be aware of how your choice of terminology may come across to your reader, particularly if they identify with the population in question". (Purdue OWL) --emphasis mine. It's a sign of respect and an acknowledgement of equality to refer to people by the terms they prefer. It's the height of rudeness and disrespect to force your own preferences on others and to insist, as this anonymous commenter has done, that one is "not equipped to have this type of discussion."  Firstly, it's an ad hom attack and offers no substance to the discussion at hand, which, let me point out, was a two-year-old article. Language choices should be respected. For example, my son has no desire to be identified as autistic or as a person with autism. He's Bobby. That's who he is. He wants no other label. Lily, on the other hand, gravitated to her Asperger's because she associates it with Sheldon Cooper of The Big Bang Theory, and she is proud to be like him. Rosie has no preference and doesn't care. How I refer to my kids depends on what the situation is and what the other people in the conversation need to know. When I write an article on autism, I use autistic individuals and people with autism interchangeably. I have no personal preference. I am not autistic, so I shouldn't. I should respect what the majority seems to prefer, and when I'm dealing with individuals, I should use whatever those persons prefer. Trolling the internet to play language police on person-first language is nothing more than that: trolling, and it misses the main point of having meaningful discourse that allows for growth and understanding. This page with links to several articles by autistic adults and their preference for autistic rather than person with autism may also offer several nuggets:  http://autisticadvocacy.org/identity-first-language/. VI.   ASAN – Autism Self Advocacy Network                              http://autisticadvocacy.org/identity-first-language  ASAN intern Lydia Brown originally published this article on her blog Autistic Hoya under the title The Significance of Semantics: Person-First Language: Why It Matters. Interested in other perspectives? Here are some links to feed your curiosity.People who use “autistic” or “autistic person”: - Why I dislike “person first” language by Jim Sinclair, founder of Autism Network International - - ‘Autistic’ or ‘person with autism’? by Jean Winegardner - Autistic vs. Person With Autism by Karin - - Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW     Center - Autism as a lifestyle as seen through the eyes of an autistic adult by Kassiane Sibley - - On Language by Gordon Darroch - - Climb off your high horse already by Rob Gorski - - Autism First (Again) by Jeff Gitchel (new!) People who use “person with autism” or “person who has autism”: - People First Language: What it is and why it matters by the Arc of Anchorage - - Person First Language - Put me first: The importance of person-first language by Mary Tobin, M.Ed. - - Person First Language by Katie Nelson - An Autism Parent on Kathie Snow’s People First Language by Julie L. - - People First Language by Kathie Snow (PDF) - - Olmsted on Autism: “Retards” and “Autistics” by Dan Olmsted People who use both interchangeably: - “Has Autism” versus “Is Autistic”; A muddled debate from Autism and Oughtisms - - The Last Word on “Person First” Language by Stuart Duncan - - Is It “Autistic Person” or “Person with Autism”? by Stuart Duncan
VI. Did You Know? – Provided by Kerry Steiner * In a landmark United States District Court decision, Judge Jack Weinstein has ruled that bullying can cause a child with a disability to be denied a Free Appropriate Public Education (FAPE). The case, T.K. versus New York City Department of Education, established a legal test that can be applied to future cases in the Eastern District of New York. The lengthy 51 page decision not only established a baseline test on whether bullying can deprive a child of FAPE but it also analyzed the current standards discussed in the 2nd, 3rd, 7th and 9th Court of Appeals. The methodology used by these four Courts is not uniformed leading the way for a potential Supreme Court case regarding IDEA and bullying in the future. The rule that Judge Weinstein created is: http://www.specialeducationadvisor.com/bullying-can-cause-a-denial-of-fape/  *Great video on the changes made to TX laws last year regarding bullying and cyber bullying. http://www.txssc.txstate.edu/K12/downloads-videos.  *TEXAS:  Driver's Ed Training for Individuals with ASD/ADHD Social Motion Skills and Houston's Safeway Driving Centers have combined their expertise to offer a comprehensive driver's education program specifically designed for high functioning individuals with Autism Spectrum Disorders (ASD) and ADHD. Safeway's state authorized driving curriculum has been approved and adapted by Social Motion Skills' education experts to bring ASD/ADHD families the most comprehensive driving program in the country. The result is "Driver's Ed at Your Speed". Full information is available at www.socialmotionskills.org.  *Ever thought about taking your family to any of the Walt Disney locations (Disneyland, Disney World or on a Disney cruise), but were concerned about how your Special Needs child would do? Read the email I received from Robyn Adams at Travel with the Magic: All of my services are completely free and I specialize in helping families with special needs take on the parks, and I can assist families all over the world. Over 90% of my guests need a little more attention to detail and I enjoy helping in any way that I can. I have experience in helping families with Diabetes, MS, Cerebral Palsy, Aspergers, Autism, lung disease, cancer, Celiac, multiple food sensitivities/allergies, sensory processing disorders, feeding tubes, OCD, and so much more. Please feel free to contact me and I will be glad to help in any way that you need. I can help with Walt Disney World, Disneyland, and the Disney Cruise. Please email me at Robyn@travelwiththemagic.com or call my cell at (404) 277-0212 begin_of_the_skype_highlighting            (404) 277-0212      end_of_the_skype_highlighting. You can also visit the website www.TravelWithTheMagic.com.  *For those of you who don't already know about it, this adventure park in San Antonio is designed exclusively for Special Needs individuals! One Day pass = Adult $15, Children $10, plus they have 10-day and seasonal passes.  Please share this with the families you serve. http://www.morganswonderland.com/  *If you've never heard or read "The Crazy Ones" by Steve Jobs (Apple Computers), then I'd invite you to do one or the other from the attached links. http://www.youtube.com/watch?v=8rwsuXHA7RA   *Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do. – Steve Jobs (founder and CEO of Apple)  *TEA has just sent out this email about proposed changes to the regulations regarding Resolution of Disputes Between Parents and School Districts. It appears the federal Office of Special Ed Programs (OSEP) found a number of things in the TX rules that did not follow IDEA regulations. Note that while they are asking for input now, they will be involving stakeholders (schools, educators, education groups, parents and perhaps some state parent support groups). If you or someone that you know has the opportunity to participate as a stakeholder, please consider participating or encouraging others to participate. Especially for these changes on disputes, it is important that parents have a strong voice. OSEP may have told TEA to include much of what is below, so TEA may not be able to change some of this. In a quick reading, it appears that the major additions have to do with expedited hearings that are to take place when the dispute is over a discipline decision. Underlined words/sentences are new. Items with a line through them are being deleted.  Subject: TEA Special Education Web Page Update Dear Listserv Members: Over the next several months the Divisions of Legal Services and Federal and State Education Policy will bring forward two sets of proposed special education rule amendments. See the document below to find the first set of draft proposed amendments.  These proposed rule amendments reflect general clean-up and changes resulting from our recent OSEP monitoring visit.  TEA proposes to submit these amendments for stakeholder and then public comment and to have rules in place prior to the 2012-13 school years. Please review the document below and send any questions or comments to the TEA Legal email account at tealegal@tea.state.tx.us. The due date for all feedback is 11:59 PM on July 3, 2012.