Wednesday, September 26, 2018

Letter: Keep Helen Keller in the Texas Curriculum

This e-mail was composed and sent to our Texas State Board of Education representative for District 5, Mr. Ken Mercer, on September 26, 2018.

Dear Mr. Ken Mercer,

I am writing to you concerned about the State Board of Education’s recommendation to eliminate Helen Keller from Texas’ 3rd grade textbooks and curriculum.

I’m a Deaf mother of three children with different hearing/deafness etiologies. My oldest son is Deaf and in 8th grade, my daughter is hearing and in 7th grade, and my youngest son, Orion, who is DeafBlind is in 3rd grade. I am currently studying for my M.Ed. in Special Education focusing on orientation & mobility via Texas Tech University. Meanwhile, I will be receiving my academic certificate in DeafBlindness in December 2018.

I understand a rubric was used to evaluate historical figures, with the goal that decisions can be as objective as possible. However, with this rubric, Helen Keller was given 7 points and recommended for removal, yet Billy Graham a pass to be kept in the curriculum regardless of a rubric scoring that was lower than others slated for removal. The rubric configuration that was used is clearly not working and is inconsistent, thus not credible in my eyes.

Helen Keller caused change and enlightenment to take place worldwide. Taking 40 minutes of instructional time to talk about Helen Keller is not only the tip of the iceberg, it opens a door to further development understanding, empathy and many friendships with people who are different. Approximately one out of five Americans have a disability. Our curriculum needs to reflect that. We need to retain exemplary role models who have disabilities for children with or without disabilities.

Although Helen Keller was not the first DeafBlind student in the U.S., she was the first DeafBlind graduate of Radcliffe College. She co-founded what is now known as Helen Keller International, an organization that brings awareness and prevention of blindness worldwide. Helen Keller met several US presidents, she challenged the Lion’s Club to aid the blind and visually impaired which they proudly still do to this day, she worked for the American Foundation for the Blind until her death in 1968. Her body [lies] in rest at the Washington National Cathedral. Keller was so famous that anywhere she went, people paid attention to her and what she had to say, making a positive difference. Helen Keller was not only an extraordinary DeafBlind person, she was a notable, exceptional person regardless of her abilities.

The Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC) was established in 1967 after the Helen Keller National Center Act was passed to provide rehabilitation training for individuals who are DeafBlind.

In 1964, Helen Keller received the Presidential Medal of Freedom from President Lyndon Baines Johnson, our US president who hailed from Texas.

Governor Greg Abbott, proclaimed June 2018 as “Helen Keller DeafBlind Awareness Month” in the state of Texas. (Direct link to an online image of the document: https://gov.texas.gov/uploads/files/organization/disabilities/2018-Helen-Keller-DeafBlind-Awareness-Month.pdf)

Initially people are impressed by Helen Keller’s story as a person who is DeafBlind. Eventually, people will see quite a resume of accomplishments by anyone regardless of ability. I will be satisfied when the Texas State Board of Education withdraws their recommendation for removing Helen Keller from the curriculum. I thank you and the State Board of Education for your time spent on considering this very important, far-reaching matter on hand.

Sincerely,


Heather Lightfoot Withrow
Austin, Texas
www.OrionTheKid.com

Monday, August 27, 2018

Insights on Similarly-Sized Hands

By Heather Withrow

Orion always seemed to have a little more patience for little hands, even as a toddler in center-based early intervention programs (Kendall School's Parent-Infant Program & Texas School for the Deaf's Toddler Learning Center). He spent more time allowing and thinking about the hands of his similarly-sized peers. People who know Orion have recognized that there is something special about little hands for him!

I had a conversation with Eddie Madera at the National Family Association for Deaf-Blind (NFADB) conference that was hosted in July 2016 in Austin, Texas. He brought up hand sizes, how similarly sized hands were easier for him to feel/receive. That made sense... Orion liked little hands perhaps because he could recognize the other hand's dimensions quickly due to it's similar small size.

Enjoy this video of Orion's big brother and I talking about similarly-sized hands! Skyler's clip was from July 2016 and my part was from early 2018.

Wednesday, February 7, 2018

Orion's First Year at TSD (Video)

God knows how long this has been sitting unpublished in Blogger!  Let this video fly free! This is of our precious Orion during his first year at Texas School for the Deaf, at 2 years old in what was then called the Parent-Infant Program (now called Toddler Learning Center).

It is a delight to present to you this collection of moment snippets of Orion and Amy, his teacher, during the 2012-2013 school year at TSD. This video was created in May 2013.




Video Notes:
The video opens with two women working on swinging Orion in his blanket. The woman on the left is Carolina, she is a certified orientation and mobility specialist (COMS), a key person on my son's IEP team. Amy, his teacher of students who are Deaf/HH, is on the right.

If your child is DeafBlind, blind or visually impaired, he has the right to have an orientation and mobility (O&M) evaluation and if a need is found, to then receive services. Orientation and mobility is listed as a related service under Individuals with Disabilities Education Act (IDEA, 2004). No baby is too young for O&M services. Like you saw in the video, Orion received O&M at 2 years old.  Movement development starts at birth!

At 3:07 in the video, Orion is sitting in his stroller and giggling along with the honking geese. While wearing his CI processors, he appeared to find the honking amusing! (He doesn't like his CIs anymore.)

At 3:27, in the shot where Orion is sitting at a floor table, he is surrounded by his early intervention team which included a speech-language pathologist (Tracy, in the video), occupational therapist and of course an ASL interpreter so the team and parents could communicate with each other.

Communication: We signed on Orion's body, also known as "touch cues", during the 2012-2013 school year. We wanted Orion to have control of his hands, so we avoided touching his wrists or shaping his fingers in any way. You will see him sometimes covering his hands over the adult signer who is signing on his body.  It's my thought that this helped Orion realize his hands were powerful, that he could get more information via hands by searching his environment, people, things and finally, tactile sign language- where he could tactually observe signs at a distance (a signer signing normally and not on Orion). This work is still in progress...

Source: IDEA (2004). Related Services, Section 300.34. Retrieved from https://sites.ed.gov/idea. (Direct link to related services: https://sites.ed.gov/idea/regs/b/a/300.34)

Saturday, December 16, 2017

Meaningful Tactile Information for Orion (VIDEO)

It's been a while since I last blogged! I've been so busy juggling family and graduate school, that I've been sitting on this video, a vlog, a video log, that I created in August. I finally captioned it! So since in my eyes, it is now accessible, I will share it.

It's about touch information for Orion, how we get certain information to Orion over a small distance or directly in touch.  This video was created as a spin-off of a blog post on the same topic that I published earlier this year, "Pearls of Touch". I've included two video clip examples of sharing tactile information with Orion.

It's 14 minutes, closed captioned (click on the "cc" icon if you need it), and enjoy.

Thursday, August 10, 2017

Adding Intervener Services to the list of IEP Related Services

Public comment submitted to the U.S. Department of Education on August 10, 2017, to www.regulations.gov on ED-2017-OS-0074, comment period deadline is August 21, 2017.

"The U.S. Department of Education is inviting comments regarding their regulations.  The June 22, 2017 Federal Register contains a request for comments, In accordance with Executive Order 13777, ‘‘Enforcing the Regulatory Reform Agenda", signed by President Trump February 24, 2017.  The Department of Education is now seeking input on regulations that "may be appropriate for repeal, replacement, or modification."  This is our opportunity to send in comments to modify the Related Services regulation by adding Intervener Services to that list (“CFR Title 34, Subtitle III, Chapter III, Part 300, Subpart A, §300.34 Related Service)."  Source: personal email.
---------------------------------------------------------------------------------------
I request a modification of the regulations to include Intervener Services on the list of Related Services.  Trained interveners are difference-makers for DeafBlind children no matter what the children's ages are or skills and language they have. They are able to adapt to work WITH the child and not FOR the child, they seek out opportunities for the child to access and make connections with things, people and the environment, they are responsible for the child's social and emotional development.  

Yes, education of DeafBlind children is a very young field. Even with early DeafBlind people, Laura Bridgman (b. 1829) and Helen Keller (b. 1880) (www.perkins.org), it is still new compared to public education and Deaf Education. In the short time this field has grown, knowledge and skills, for which there are currently Council for Exceptional Children standards (CEC link below), in interveners have proven time and time again it is a best practice in the education of DeafBlind children.  

My 7 year-old DeafBlind son, Orion, is one of these students fortunate to have been assigned interveners over the years, his first one was when he was 3 years old.  It was at that school and the first time for Orion, the IEP team voluntarily listed intervener services, which he received 1875 minutes of per week, under Related Services in his IEP document.  With the support of personnel skilled and experienced with DeafBlind children, including interveners, Orion is walking more, drinking via straw, making choices when offered, making progress with requesting things or actions of other people. Most important of all, Orion is happier on these school days where he can understand what's happening and has been "heard" by competent people who understand him.

Unfortunately this is not true for all DeafBlind children during the critical early years of their life. Caregivers, one-on-one aides, nurses, volunteers who are not trained or experienced in this field do not reach the level of efficiency in schools that interveners bring.  

The good news is that there are training resources available, some are online resources and online training programs through a few universities.  One of them is a 27-module online resource developed by the National Center on DeafBlindness, funded by the Office of Special Education Programs called Open Hands, Open Access Intervener Modules (OHOA).  There is national intervener certification available through NICE (National Intervener Certification E-Portfolio) that is based on the CEC intervener skills and knowledge standards.

By modifying the Related Services list to include Intervener Services, it opens the door to educate, empower and enable our early intervention, K-12 professionals and particularly DeafBlind children to successfully access education currently offered to all the children in our country.

References

Open Hands, Open Access Intervener Modules. National Center on DeafBlindness. http://moodle.nationaldb.org. Retrieved online August 2017.

Specialty Set: Special Education Paraeducator Intervener for Individuals With Deafblindness (PDBI). Council for Exceptional Children. https://cec.sped.org/~/media/Files/Standards/Paraeducator%20Sets/Specialty%20Set%20%20%20Special%20Education%20Paraeducator%20Intervener%20for%20Individuals%20With%20Deafblindness%20PDBI.pdf. Retrieved online August 2017.

What is NICE? National Center on DeafBlindness. https://nationaldb.org/pages/show/national-intervener-certification-e-portfolio-nice/what-is-nice. Retrieved online August 2017.

Tuesday, July 18, 2017

Awesome Orion Doings Without Words (Running & Pediasure Request)

Orion just did something awesome today and something completely different but equally awesome the other day (Sunday). What was the same: there wasn't a camera running to capture the moment. I didn't even try to get him to do it again, like we would ask of a performing monkey.  (I've done this before, yes, but I want to focus on letting him to know I saw it. That very one time counted, Orion! When we ask kids to repeat something we think they didn't do or so that we can capture it on video, we may not appear receptive or even bright at all to our own kids!)

Running Tuesday 

(Today) as posted on my personal Facebook wall:
"After happily meeting grandpa's best friend, crawling onto his lap for a snuggle, Orion ran down the hallway with lots of support from me but his legs were running! #DeafBlindKids #CanTheCant"
Orion's big brother and sister saw it all, and shared in the excitement as they walked quickly alongside us! Orion was laughing out loud as he ran (with me).

Orion "ran" once before with me, just once. Today was faster and a longer distance at around 15 meters (45 feet).  

He was really giggly during our visit with grandpa's friend, H, at a rehab place. I carried him to the lobby when we arrived, put him down to walk toward the friend's room. Orion, as a visitor, was just one of the people in this place practicing to walk in the hallways, among other things the rehab residents need to work on. He didn't want to walk all the way so I plucked him up again. Orion found H's wheelchair, the wheel, and H's hand and proceeded to climb up on H's lap!  Orion was just at home with H, snuggling up on him.  

While everyone else chatted with H, Orion provided ample laughter in the background as he stood or climbed up me with his feet and was flipped back down to standing position (his favorite).

Pediasure Sunday

We were sitting at the kitchen table after dinner and dessert at my parents' home in Washington state.  I had already unscrewed the cap of the Pediasure and poured it into Orion's hard-spouted sippy cup with him. He was feeling my hands on the Pediasure bottle and his sippy bottle. He put his fingers in the pouring stream and brought his fingers to his mouth to taste. This was an ordinary everyday thing for us.

Now here is the part I saw Orion's determination and exciting communication efforts:

Obviously finished with the sippy cup, he grabbed my hand and put it on the sippy cup.  I replied via tactile ASL, "Yes. Milk. Wait."

I took the sippy cup and filled it with 2% milk, since we usually just give him one bottle of Pediasure a day, and gave it back to Orion.  He took a swig, put the sippy cup down on the table, grabbed the empty Pediasure bottle that was still on the table, took my hand and put it on the Pediasure bottle!  Yes!  But just to make sure of Orion's intent, I gave him his sippy cup again. He drank it and repeated the same thing- grabbed my hand and put the Pediasure bottle in it. No mistake about that! I replied to him,"Yes, yes! Wait."

I scrambled to the garage for another unopened Pediasure bottle, emptied the sippy cup and brought it to the table. Orion and I did the hand-under-hand, "Do With, Not For" way of pouring the Pediasure into Orion's sippy cup whilst he dipped and tasted the drink as I put the lid back on. He drank it all contentedly and had no further requests for me.


Monday, May 1, 2017

Public Comment to TEA in Favor of Teacher of DeafBlind Certification

To State Board for Education Certification at Texas Education Agency,

We, as people in the state of Texas, have an unique opportunity to clarify and rightfully promote the needs of DeafBlind children.

I am a Deaf mother of three completely different and fascinating children, my oldest son is Deaf, my daughter is hearing, and my youngest son is DeafBlind. It is my passion as a parent who has seen the light of what is tried and true, to contribute to the efforts of recognizing best practices, intervention, educational and communication support that is needed to make a difference in the growth of children in our low-incidence disability community. All of this started when my husband and I realized, before our son Orion’s birth in July 2010, that he would be DeafBlind. I took off into the DeafBlind horizon of information and resources on the Internet and enjoyed meeting educators and fellow parents. Here I will share what is just a scratch on the surface and why we must encourage certification for Teachers of the DeafBlind (TDB).

Deafblindness is not just about the absence of sight and sound. It is so much more than the sum of these two parts. It is better described as “information-gathering disability,” rather than, “He can’t hear and can’t see.”

Even with the collaboration between a teacher of the Deaf (TOD) and a teacher of the Visually Impaired (TVI), the duo would still miss the practical intervention, educational and communication needs of a child who is DeafBlind. Yes, the DeafBlind child’s hearing etiology and listening aids may be the same as a child who is only Deaf or Hard of Hearing; and the same child’s vision etiology and visual correction, if any, may be the same as a child who is blind or visually impaired. The obvious similarities with blind children and deaf children end where the combined impact of DeafBlindness is considered. DeafBlindness is its own separate disability. That’s why there needs to be a certified Teacher of the DeafBlind involved to provide expert guidance to the child’s educational team through the DeafBlind “overlap” of the Venn diagram of the deaf circle and the blind circle.

After my youngest son was born in Maryland, people remarked to me that half the battle was won because we were fluent in American Sign Language. My husband and I quickly learned that knowing sign language was not even close to half the battle and maybe just a very small single-digit percentage of it.

We started county early intervention services when Orion was 3 months old. The interdisciplinary early intervention team of a TOD, a TVI, physical therapist, occupational therapist and audiologist were helpful, but they really shone when they could grow on the support and constructive feedback from a DeafBlind specialist from our state DeafBlind project! I always looked forward to that DeafBlind specialist’s monthly visits because we would get our DeafBlind-specific questions finally answered and learn additional strategies to help our son develop physically and cognitively. Ideally, the Deafblind specialist would be there every single home visit but she had the whole state to serve.

Orion started attending school at Texas School for the Deaf after we moved to Austin when he was 2 years old. His teacher, originally trained as a Teacher of the Deaf, started taking workshops and online courses in DeafBlindness. The difference she was making with Orion over the next few years was constantly growing. This was because her efforts were focused on DeafBlindness and not on adding more blind or visually impaired-specific training to her resume. She has since moved onto new opportunities but her heart has “DeafBlind kids” stamped on it and she is still in touch with us.

Now Orion is almost done with his first year at Texas School for the Blind and Visually Impaired (TSBVI) as a 6 year-old. My husband and I felt the school year started off well because Orion was picking up the routines, figuring out the classroom and getting to know at his own DeafBlind pace his teacher, teacher aide and whatever IEP service provider was in the room to give services. Everyone in the classroom were good at what they do- interacting with Deafblind kids with Deafblind intervention strategies.

I have observed and inquired various TSBVI personnel their source of DeafBlind know-how by learning on the job right there on campus over the years, they’ve attended workshops on various topics that applies to DeafBlindness and Active Learning, presentations and demonstrations by DeafBlind experts from around the world, and the enriching guidance of the personnel in the Texas DeafBlind Outreach department is right there on campus, too. Orion’s classroom teacher is also mentored by a Teacher of the DeafBlind who participated 5 years ago in TSBVI's pilot program training future TDBs. This TDB’s office is just a few doors down the hallway from Orion’s classroom.

TSBVI clearly encourages and nurtures the interactive growth of DeafBlind skills and knowledge. We need to make studying to become a certified Teacher of the DeafBlind available as a professional goal on the state level. This way Orion’s school age DeafBlind counterparts, statewide, can benefit from the same level of expectations and proficiency.

Orion has been making tremendous progress this past year, there’s nothing magical about it. It’s DeafBlind strategies being used appropriately, thus our son Orion is thriving in his own DeafBlind way.


Sincerely,

Heather Lightfoot Withrow
Austin, Texas