Connect

Graciela Tiscareno-Sato

@GraceTiscareno

Graciela Tiscareno-Sato

www.GracefullyGlobal.com Email: [email protected] Text me for slides: (510) 542-9449 Learning From Parents’ Journey Raising a Child with Dual-sensory Impairments

Birth to Age 12

MAER Conference Keynote

Graciela Tiscareño-Sato, Milagro’ Mom and CEO, Publisher of Gracefully Global Group LLC [email protected]; Tel. (510) 542-9449 12 Years Ago… • Beaumont • ROP stage 4 /plus disease • Insurance fight: “Your company’s benefits do not include medical transport by Lear jet.” 12 Years Ago…

• Two surgeries a week apart • Beginning of grief, “loss of potential” • Chronicled at BabyMilagro.org • Widely-used NICU resource My Goal – a Deeply Personal Message as Mother, to You

• What worked for us to raise a wild and literate child • What didn’ work and was counterproductive • How you can use our experience to serve your students, families, adults • Resources, articles, games My Daughter Milagro

• Fragile start, 10.5” long, 1 pound, 25 weeks • Dual-sensory impairment • Who She Is Today – 5th Grade Speaker – Cochlear implant success story in the making – Bee Competitor What Didn’t Work

• Parent groups of perpetual grief • Limited knowledge, desire to act = waste of time • District parent meetings/peripheral topics =empower

• Camps where kids are dependent – STORY - 17 year-old with elbow appendage Stories to Share w/Families

• 2008 - NFB Dallas w/two parents at bar at midnight – TRUTH • “If we let him get a cane and learn Braille, we’ll have to admit that he’s really blind.” • My response • Today – child thriving at CSB

TIP: Moms can say things to other moms (and dads) that must be said and they’ll be heard…but when a professional does it… For Current & Future Teachers

What Worked Empower Parents to Act by First Accepting the Situation Empower Parents to Act

ARTICLE for parents: “What I Did Before my Daughter’s First Birthday” – Adopted: "Don't lose your child to the disability."

http://www.familyconnect.org/parentsperspectives.aspx?D ocumentID=4108 Empower Parents to Act – FUTURE view, Philosophy – BBF counselor gift: Small Victories: Conversations about Prematurity, Disability, Vision Loss and Success by Mary Lou Dickerson

“Let your kids fall flat on their faces. Let them decide their own limitations.”

Roger Gordon Jones in Small Victories Empower Parents to Act – (a..a Go Ahead, Meet Blind People)

• Two years before baby • Confronted blindness head on; CA NFB – Tears/fear became real – Product managers, engineers, tech experts – **First glimpse of hope and possibility for daughter’s future Meet an Independent Blind Adult for Lunch

• Strategic thinking. I asked 2 things: • "What did your parents do really well as you were growing up?" and • "What do you wish your parents had done differently?“

• Get Real, Glimpse the Future

Andrea and Chip Power of Inspirational Parents: Meb Phillips

• Elizabeth’s story; Meb Phillips, Mom’s resolve • Advice to me, my advice for parents: – Get on Seedlings (print/Braille books) mailing list – Meet parents of older kids who are blind in district – Seek adaptive tech to make world accessible – Learn the laws, ensure compliance for your child’s sake

“Never let them have low expectations of your child.” • I’ll get specific with that topic in this afternoon’s workshop For Parents: Give Specifics to Act

Provide article: “Braille for My Baby: Six Things You Can Do at Home for Your Young Blind Child” Future Reflections Special Issue: A Celebration of Braille

Infancy: get Attend NFB Learn Braille Adopt touch-and- Convention code Mom & Perkins feel, w/child Dad; toddler: Panda Seedlings FREE! produce labels and his Books. for household books and objects. music. Source: https://nfb.org/images/nfb/publications/fr/fr28/fr280113.htm Action! Trapeze Progression Genesis: tool to encourage standing

1. Holding/bouncing [2] 2. Early spinning [2 ½] 3. Spin and hang in WA [3 ½] 4. Jumping off couch [4] 5. “Upside-down trapeze!” [5] What Worked: Power in Numbers

• Breakfast at my house – 10 moms • Uncovering hours of Braille instruction over-promised • How we approached TVI for data • How TVI helped us help her • My visit to the Director’s office • The fast result

TIP: Encourage parents to meet regularly for SPECIFIC purposes Acceptance: United Front for Long-Term Advocacy • As a couple – Shared vision of child’s potential and future – At age 2 –Special Ed Law Workshop, Wrightslaw newsletter • BOOK: From Emotions to Advocacy ("my spED how-to manual”) • BOOK: Special Education Law Acceptance: United Front for Long-Term Advocacy

CRITICAL for both commit to: 1) KNOW our rights 2) EXERCISE our rights/child’s rights 3) EXPOSE our IEP team to legal framework “sing off same sheet of music” Informed, Forceful Parental Advocacy Critical to Literacy – Record all IEP meetings – Attend ALL IEP meetings together, no exceptions • "You Gotta Know The Rules If You're Gonna Play The Game" • Nurture the parent/school district(s) relationship (“a marriage without possibility of divorce” https://nfb.org/images/nfb/publications/fr/fr28/3/fr280312.htm Acceptance Motivates Parents to Act for Child’s Sake • Acceptance of disability must come first • Action trumps grief • The long-term view MATTERS • “Add to your knowledge to benefit your child” • Connect w/awesome parents, kids who are blind

• For example…. United Front – IEP Vision Slides United Front – IEP Vision Slides United Front – IEP Vision Slides United Front – IEP Vision Slides United Front – IEP Vision Slides United Front – IEP Vision Slides Resources that Worked Braille Primer book from The National Braille Press

• A MUST-HAVE • Large pull-out sheet of Braille and contractions • Taped to bathroom door • Study code five-minutes at a time is great way to start • GET THIS! www.nbp.org or (800) 548-7323 Weird date nights with Braille and wine Label the Home – “Bumps have meaning”

APH in-home labels, provided by TVI: + Sink, window, bed, toilet, drum, door, doll, book, cup, plate… We added more: closet, dryer, washer, dishwasher….

Speak the word aloud every time she touched labels. Bite – sized Pieces 365 Days of Experiences

Dryer Lint! Mountbatten, BrailleNote, APH Draftsman ASAP in home

Due to age-appropriate expectations, we NEVER bought into the opinion of “readiness” for these literacy tools; wrote goals EARLY to require them to get them in her hands ASAP. Met Stanford Univ. student who’s Blind – Helped Move • Profound impact on me • Guide dog • Clothing organization • Orientation process • WOW – again, the power of older students/parents Demanding High Expectations Power of Inspirational Parents: Eric Vasiloukas, .. • Keynote speaker CTEVH “Equal Expectations: A Belief Paradigm or a Politically Correct, Feel- Good Phrase?” • Two sons blind with LCA (Vejas, Petras) • Lithuanian Braille

ARTICLE SOURCE: NFB Future Reflections, Winter/Spring 2008 Equal Expectations?

Reading Rate (wpm) Grade Grade Level Texas School for the Words per Minute (wpm) DOE Blind and Visually Level Michigan Scale * Silent Oral Impaired (TSBVI) Assessment Kit 2 70-100 66-104 3 51 30 3 95-130 86-124 4 58 --- 4 120-170 95-130 5 66 --- 6 67 60 5 160-210 108-140 9 --- 90 6 180-230 112-145 High School --- 120 7 180-240 122-155 Graduate College 115 ---

“The greater danger for most of us lies not in setting our aim too high and falling short, but in setting our aim too low, and achieving our mark.” Michelangelo

*Source: AERBVI list serve-http://lists.aerbvi.org/pipermail/aernet_lists.aerbvi.org/2012-October/020133.html Current Literacy Activities Early Bilingual Braille Books Journaling about Outdoor Adventures/Objects • FOR child, as she listened • With child, helping with spelling • Independently • In car, with BrailleNote… Child As Advancement Ceremony Speaker

Milagro reads “Vannoy is a Rose” Adapted Games for Fun, Socializing • Slumber party • Girl Scout Camp Adapted Games for Science -I---

• Chips stay in squares • Can play at home/church Discovering German and For Those Serving Adults

• ASAP: student MUST meet an independent role model/mentor

• Attend NFB Convention – 1st time scholarships available

• Join NFB list serve (sportsrec and many more) to never feel isolated The Results Results: JOY and Eagerness!

Captain Underpants & the Attack of the Talking Toilets Results: JOY of Reading Braille Quesadilla Contest

• How many contractions can she read in 3 minutes? Braille Bee – Top 8 Finalists, CA School for Blind

Dot 5 = right

Willpower Recent epiphany – my daughter inspiring me

“If she can achieve all that without eyesight and with a severe hearing impairment, imagine what little Latinos without those impairments can accomplish, if only all educators, administrators and parents have high expectations of them.” – Graciela Tiscareno- Sato, Milagro’s mom in a blog post at the White House site Third-Party Approach Works

• “Let me show you a little girl who…..” • “Let me show you how one family….”

– DVD 1: Letting Your Child’s Wild Side Out

– DVD 2: Letting Your Child’s LITERATE Side Out (Preorder & buy at www.GracefullyGlobal.com/commerce; ships fall 2014)

• Mom/dad will listen because it won’t be perceived as telling them how to raise their child; you’re storytelling. They will learn on their own, because it’s a story from a mom of a child like theirs Blogging: Compelled to Share Our Journey

Blog.gracetiscareno- sato.com 12 Years Ago…

• Beaumont • ROP • Beginning of grief

• Thrilled to be here, in this important place today, way beyond grief, sharing with you what worked in our home and schools to raise a wild and literate child who, in her words is “excited to soon be a teenager.”

• THANK YOU! Click to edit Master title style • Click to edit Master text styles – Second level • Third level – Fourth level » Fifth level

QUESTIONS? 57 Connect

Graciela Tiscareno-Sato

@GraceTiscareno

Graciela Tiscareno-Sato

www.GracefullyGlobal.com Email: [email protected] Text me for slides: (510) 542-9449