October and Disability Awareness — 2019

ICYMI "In Case You Missed It!"

Throughout October, the Office of Special Education and Rehabilitative Services highlighted aspects of disability awareness for national disability employment, dyslexia, learning disabilities, ADHD and Down syndrome.

Check out the stories below.

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My Ever-Evolving Journey: Mom, Advocate, Board of Education Member

Note: October is Down Syndrome Awareness Month

Dria, Mom and Sister

by Dria Law, Moorestown, N.J.


I am the mom of two teenaged girls, one of whom has a disability.

My youngest daughter, Julianna, or Juls for short, was born with Down syndrome, and like many parents of a child with a disability, I found myself thrust into a whole new world. This world revolved around early intervention services, medical appointments, and learning as much as I possibly could about Down syndrome. I was discovering early-on that not only would I need to be Jul’s parent, but also her advocate.

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Blue, Purple and Green: How I Color Coded my Child Into Middle School

Note: October is Down Syndrome Awareness Month

Zoe – my color coded sixth grader with mosaic Down syndrome

Zoe – my color coded sixth grader with mosaic Down syndrome

By Suzanne Wingard, Director of Training, Family Connection of SC


Color has always been a part of organization in my life – from taking notes in school to sorting training handouts at work. It has visually simplified even the most complex tasks mainly because I am a visual learner. Luckily, so is my daughter.

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Ruby’s Story: Inclusion, Self-Advocacy, and a Future that Could Include College

Note:  October is Down Syndrome Awareness Month

Ruby stands on stage with a microphone waving to the crowd during NW Buddy Fest 2018

Ruby stands on stage with a microphone waving to the crowd during NW Buddy Fest 2018

By Maria Rangel, Ruby’s mother


My daughter Ruby and I share a love for taking pictures on our phones and capturing memories. We have hundreds of photos of things we did this summer.

One morning as she was getting ready to go to her first day of eighth grade, she asked me to print some pictures on her phone, I said “no, later when you come back from school.”

She then insisted.

“Now for school. Share,” she said.

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Oh, the Places You Will Go!

NOTE:  October is National Down Syndrome Awareness Month and Learning Disabilities/ADHD/Dyslexia Month

Emma & Dan’s Story

Emma Frome and Daniel Jarvis-Holland attending their first advocacy rally as small children

Emma Frome and Daniel Jarvis-Holland attending their first advocacy rally as small children

Emma Frome and Daniel Jarvis-Holland attended their first advocacy rally with us as small children 19 years ago in Salem, Oregon as we protested cuts to early intervention.

As our children have grown up together, we’ve worked with many others to create a powerful social change organization and to raise our children to be kind and inclusive human beings.

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October and Disability Awareness

ICYMI "In Case You Missed It!"

In addition to announcing OSEP’s new director, Laurie VanderPloeg, and interviewing Caryl Jaques at Little One’s University preschool, this October, we highlighted aspects of disability awareness for National Disability Employment, Dyslexia, Learning Disabilities, ADHD, and Down Syndrome!

Check out the stories below:

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It Takes a Village

NOTE: October is Down Syndrome Awareness Month

Courtney Hansen holding her two boys on their front porch.

Courtney with her twin sons on their first day of kindergarten in a new state. The boys play t-ball together, love Super Why, biking to the park, and are in the same kindergarten class.

A guest blog by Courtney Hansen. Courtney is a non-attorney special education advocate. She advocates at the local, state, and national level for disability rights, and blogs about it at www.inclusionevolution.com


My son with Down syndrome and his typically-developing twin brother just started kindergarten. The military also just moved us across country this past summer.

There’s been a lot of change this year, and I was often overwhelmed by the idea of my first-born twins starting “real” school in a new state. I cried like a baby their first day of school, but they just marched off to school like they owned the place. I was amazed, but realized that it was the result of years of preparation and help from so many different people. Having a son with a disability has shown me the value of “the village.”

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Our Highs are Higher

Carrie Woodcock and her family posing in front of a lovely rural stream

Carrie Woodcock and family

Carrie Woodcock is director of the Maine Parent Federation and a parent of 10-year-old Sami who has Down syndrome.


This summer, I attended a conference alongside doctors, nurses, physician assistants, therapists and other medical professionals, all of whom work with children with special healthcare needs and disabilities. I was there to represent parent voices as the director of the Maine Parent Federation, an OSEP-funded Parent Information Center. I am a big supporter of, and was very excited for, the keynote presenter that day, Dr. Brian Skotko.

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Carrie Woodcock and daughter, Sami.
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Director of the Maine Parent Federation and a parent of 10-year-old Sami who has Down syndrome.

Words of Wisdom

Note: October is Down Syndrome Awareness Month.

Jordon Bills

Jordon Bills

Jordan Bills, M.A., CCC-SLP, is a speech-language pathologist (SLP) at Washington Speech in Fairfax, Virginia. She works with children of all ages with various speech, language, and feeding disorders. She received her bachelor’s degree from the University of Virginia and master’s degree from the George Washington University. You can read more about Jordan’s credentials and accomplishments on the Washington Speech staff page.


Why did you become a speech-language pathologist (SLP)?

In high school, I volunteered at a center for blind and visually impaired children for three summers. I worked side-by-side with the speech pathologists, occupational therapists, and physical therapists at the center. The work they did was incredible and I knew this is what I wanted to do! One child in particular had a large impact on me. He was three years old and unable to respond to his name. By the end of our summer together, he was not only turning toward others when they said his name but also responding to their greeting. I’ll never forget the feeling when I heard him say, “Hi, Jordan!” In that moment, I understood the power of communication. Communication is what connects us to one another. It’s what makes our lives so beautiful! I feel lucky to spend my days helping children communicate more effectively.

Why do you enjoy working with children with Down syndrome?

As a pediatric SLP, I have the privilege of working with children with Down syndrome across their lifespans. This is one of my favorite populations to work with because of the great potential for growth. Every milestone is celebrated, even the small ones, as each child works so hard to develop their speech and language skills. Every child with Down syndrome has unique strengths and interests, which I use to support the development of new skills. I have targeted bilabial sounds /b, p, m/ in functional phrases while playing basketball; used a child’s desire for hugs to teach expanded question forms (Can I have a hug?); and taught subject-verb-object sentences using Disney characters.

With younger children, I spend a lot of time playing on the floor. Children tend to learn best through repeated experiences with real objects and situations. Play is their vehicle for learning. As they enter elementary school, our sessions include more structured tasks focusing on the skills they need to participate fully in the classroom and to interact with friends. My goal for all of my clients with Down syndrome is for them to be able to effectively communicate with friends, family, and professionals across environments. My hope is that improved communication will allow them to experience the joys in life that come from making connections with others.

One of my favorite events is the annual Buddy Walk in Northern Virginia. Attending this event gives me the opportunity to see some of my patients outside of the therapy room. I love watching them with their families and friends participating in a community event. It reminds me of why I love what I do!

What are some tips that you have for families with children with Down syndrome?

Parents and other caregivers are the primary communication partners in a young child’s life. Therefore, parents play a critical role in helping their children develop speech and language skills. Below are some strategies for families to support communication development from birth through early elementary school.

Strategies for Birth to First Word Users

  • Focus on pre-linguistic skills. These are skills a child needs to master before words emerge. They include: joint or shared attention, social referencing (checking parents’ facial expressions to understand how to react appropriately in new situations), turn taking, pointing, sustained engagement and attention, and imitation.
  • Use language stimulation techniques in everyday activities to help your child develop his/her understanding and use of new vocabulary words. Techniques include: self-talk, parallel talk, sentence completions, choices, and communication temptations (actions you can take to set up the environment to tempt your child to communicate with you).
  • Consider a Total Communication This evidence-based approach incorporates speech, manual signs, gestures, pictures, and/or a speech-generating device to help children communicate as effectively as possible while developing verbal speech. This approach can reduce frustration and support long-term vocabulary development.
  • Familiarize yourself with the stages of play. Challenge your child to engage in symbolic and early pretend play.
  • When teaching new words, use real objects or pictures of real objects. Incorporate vocabulary learning into your daily activates.
  • Don’t forget about your child’s oral-motor and feeding skills. Children with Down syndrome are at risk for feeding difficulties. A certified speech-language pathologist can evaluate your child and develop an individualized treatment program to help him/her improve oral-motor skills for feeding.

Beyond First Words: Learning to Combine

  • Research shows children begin to combine words when they reach a single word vocabulary of around 50 words. Ensure your child has a variety of single words (e.g. nouns, verbs, pronouns, social words, adjectives) he or she can use to combine. Keep a record of the words your child uses to monitor vocabulary growth.
  • Continue to build your child’s vocabulary during play and daily routines. Teach 2-3 word combinations and encourage imitation. Children with Down syndrome benefit from repeated experiences with the same activities and vocabulary.
  • Use expansions (adding one word to what your child says) to model phrases. Do this often! It will likely take many repetitions before your child imitates your expanded phrase.
  • Try a pacing board to help your child learn to combine words. Pacing boards provide a visual and tactile cue to remind your child to use two words. They are helpful for children with Down syndrome given their strengths in visual learning. A simple pacing board can be two large dots on a piece of cardboard or thick paper. Point to the first dot and say the first word, then point to the second dot and say the second word.
  • Read often! Try books with repetitive phrases your child can learn and eventually fill in.

Early School Age

  • As your child’s vocabulary and utterance length increases, speech intelligibility often becomes a main concern. Again, a pacing board can be a useful tool. This time, your focus will be on teaching your child to speak slowly and producing each word deliberately while touching one dot on your pacing board. Speaking with a slowed rate can help improve your child’s overall intelligibility.
  • In speech therapy, your child may be working on specific speech sounds or patterns of sounds. Work closely with your child’s speech-language pathologist to continue practice at home. To increase your child’s motivation, incorporate target sounds into highly meaningful words. For example, if your child is working on the /k/ sound, “cookie” and “car” may be very motivating words. Daily practice is key!
  • Use recasts to help your child develop appropriate grammar. Grammatical recasts are when you take your child’s utterance and repeat it using adult grammar. For example, if your child says, “dog eat,” you would say, “Yes, the dog is eating.”
  • Consider AAC (augmentative and alternative communication) to supplement verbal speech. This may increase your child’s ability to be understood, participate in class, and engage socially. It may also decrease frustration.

Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Things People Say

Note: October is Down Syndrome Awareness Month.

Jessica Wilson and her son, Jasper

Jessica Wilson and her son, Jasper

A guest blog by Jessica Wilson. Jessica and her son, Jasper (aka Jaz, Jazzy, the JazMaster, or Dude!), live in a cozy house of fur with two crazy dogs and two lazy cats. Their favorite activities include singing movie hits, dancing in the kitchen, snuggling and traveling the world together. Jessica is Director of Communication and Dissemination for the Center for Parent Information and Resources (CPIR) and Resources for Access, Independence and Self-Employment (RAISE) projects with the Statewide Parent Advocacy Network (SPAN) in New Jersey.


Number One. “Did you know?”

They never complete the thought, as if just looking at him implies what they’re really asking. I ache to play dumb: Know what? That he would almost never cry as a baby and be a champion sleeper? That he would love to swim but hate to play soccer? That I could love him ‘til it hurts and still get so annoyed by some of his antics? As obnoxious as my brain screams for me to be, I simply answer, “No. After losing the first one, I didn’t want to take any chances with this very wanted baby.”

The mention of my previous sorrow precludes them from saying anything directly about those tests, so I leave it at that. I resist ranting about warped concepts of perfection or the technologies the medical community pushes that are incapable of measuring the value of those born “dappled.” If I launch into my diatribe, their eyes glaze over as they nod in the faux agreement children give their parents when they just want the scolding to stop. I can always tell when they’re thinking, “I would have the test.” I couldn’t guess what they would do if it were positive.

Number Two. “My sister’s/cousin’s/brother-in-law’s/landlord’s daughter/nephew/classmate/neighbor is ‘like him’.”

What, rakishly handsome? Lucky them. A consummate flirt? Better watch out! The self-appointed town mayor, greeting every person or animal we see on the streets? Good luck getting anywhere quickly with such a gregarious kid.

I suppose it’s an attempt to connect, a way to say “he’s okay” because they know someone who knows someone who… But sharing an extra chromosome doesn’t make anyone like someone else any more than two people having green eyes does. Don’t tell me these six-degrees individuals are “like” each other. They aren’t.

Number Three. “He’s so high-functioning.”

Yeah, far more than I am at 3:00 a.m. “MOMMY!” “urgh…?” “WHY ARE YOUR EYES CLOSED?!” “I’m sleeping, baby.” “WHY?!” “unnnhhh…” “READ TO ME!!!!” (seriously?)

Number Four. “Funny, you can’t see it.”

What’s there to see? His almond shaped eyes that look through me as the spark of laughter flickering within them sears my soul? His cute little hands with that long crease across his palms holding mine, petting the cat, learning to write his name, wiping away tears when he’s mad? The orthotics helping reshape his desperately flat feet?

What exactly are you looking for that will legitimize him in your eyes? Maybe I should carry the envelope with the verdict handed down by some anonymous technician. Perhaps the letter from the state when the lab automatically reported his existence to the county health department “for statistical purposes.” What can’t you see? He’s a kid, growing up loved. What else are you looking for?

Number Five. “I’m sorry.”

You should be. You’ll never hear the thoughts he speaks to me with his smiling brown eyes as he tilts his forehead to rest against mine. You’ll never drink in the heat that radiates from his head or taste his soft hair on your lips. You’ll never be awakened (again) at 3:00 a.m. by the hot air from his mouth on your face as he whispers, “Mommy, I want snuggles.” You’ll never know how it feels to celebrate every jump forward in development that other parents take for granted, but when he finally does it, it’s a very, very large molehill.

You should be sorry that you can only see back in time. This is a new era with new opportunities and new ideas about potential and worthiness. I’m only sorry it’s taken this long and that we still have so far to go.

Number Six. “That’s awesome!”

Thanks, Brian—you are the right kind of friend. May everyone with a kid “like mine” know a man like you.

Number Seven. “I don’t know how you do it.”

I’m his mother. Still confused?

Things I Say.

“I’m so proud of you.” “Boy, you’re handsome!” “Why won’t you let me cut your nails?” “TURN THAT DOWN!” “Wanna go bowling?” “Sweetheart, don’t let the dog beg like that.” “Would you please put this stuff away?” “You’re just too good to be true/Can’t take my eyes off of you.” “No, I don’t want to smell your feet.” “I love you, my sweet angel. You’re my heart and soul, my love and my life.” “You know you drive me nuts, right?”

Number One.

“I’ve loved my son since before he was ever born. What else is there to say?”


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.