4 Resources to Help Teachers Include Students with Down Syndrome in the General Education Classroom

September 25, 2018 by Courtney

So, you have 35 years of evidence-based research and federal law behind you. Your child with Down syndrome has a teacher with an open heart and willingness to include him or her. But it’s the actual act of inclusion day in and day out that’s stumped teacher. It’s the “HOW” and “WHAT” to teach students with Down syndrome in the general education classroom that can often be difficult.

Let’s be honest, most general education teachers do not receive the proper training or support to include a child with an intellectual disability in their classroom. I have a Master’s in Education and only took two graduate level classes on special education. I received no hands-on training. So, I can empathize with teacher’s who are at a lost as to what and how to teach our children.

Related: 5 Tips for Including Students with Down Syndrome in the General Education Classroom

The link above walks parents through 5 tips to help their child with Down syndrome be included. We know parents are the expert of their child, but it’s the teachers that need support. It’s a fact, that including a student with an intellectual disability takes some preparing and a village of support. Although following the law and having an open-heart is half the battle, teachers also need evidence-based resources that they can use tomorrow in class.

Here are 4 resources to help teachers include students with Down syndrome in their class:

1. The National Professional Resources, Inc.

I took a fabulous inclusion workshop by Richard Villa this past summer at the National Down Syndrome Congress Convention in Sacramento. He helped me find NPRinc, which is a treasure trove of professional development products for teachers. This is a the “HOW” of teaching students with Down syndrome.
Villa just published a quick-reference laminated guide to “Differentiated Instruction in the Inclusive Classroom.” You can find it here. NPRinc. also has hundreds of other books and quick reference guides to include students with disabilities. Look at the “Products by Topic” on the left, or enter “Down syndrome” in the search engine. You’ll find books on teaching students with Down syndrome to read and do math, as well as dozens of other topics.

Related: Federal Appeals Court to Decide if Student with Down Syndrome Can Stay In General Education Classroom

2. National Center on Universal Design for Learning

Universal Design for Learning is the wave of the future. This approach takes into account the fact that all students learn in their own unique way. It’s another “HOW” in teaching students with Down syndrome. The National Center on UDL has teacher toolkits and great examples and resources that teachers can implement right away. There’s 3 basic ways to reach all learners according to UDL:
Multiple means of representation to give learners various ways of acquiring information and knowledge,
Multiple means of expression to provide learners alternatives for demonstrating what they know, and
Multiple means of engagement to tap into learners’ interests, challenge them appropriately, and motivate them to learn.

Related: Promoting Inclusion through Universal Design for Learning

3. Common Core Essential Standards

In answering the “WHAT” of teaching students with Down syndrome, this is a great place to start. Common Core is a controversial topic, but some amazing educators took the standards grade-level content and broke it down for students with disabilities. “The purpose of the Essential Elements is to build a bridge from the content in the Common Core State Standards to academic expectations for students with the most significant cognitive disabilities.”
You can check out essential standards for grades kindergarten through high school right here.

4. Down Syndrome Education International:

I usually don’t like Down syndrome-specific learning techniques, because I think students with Down syndrome can learn like other students if the appropriate accommodations and modifications are used. But I do love Sue Buckley’s literacy and math techniques.
Buckley is the creator of Down Syndrome Education International, and she has educator online training. These one to two hour webinars offer research-based techniques, practical advice, and work examples. I’ve seen Sue Buckley in action at several conventions, and she’s amazing! Click here to register.

If you’re an educator, share your biggest challenge in teaching a student with an intellectual disability below. If you’re a parent, what do you wish your child’s teacher knew more about? Share your journey with me below or send me a private email!

Class of 2031: Yes, My Son with Down Syndrome Can Go to College

June 20, 2018 by Courtney

With over 260 college options, the future is looking bright for students with intellectual disabilities.

I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College”.

I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diploma’s together.

The year is 2031, and it’s the culmination of years of hard work, as well as the beginning of years of hard work to come.

But why is this even news, you ask. After all, twins graduate side-by-side every spring.

What if I told you my twin boys are so unique that the odds of recreating another birth like them is 14 in a million! I know, I know…I should play the lottery.

But this alone isn’t even newsworthy.

The real headliner here is that one boy is neuro-typical, while the other has Down syndrome.

And the truth is, no one expects much out of the latter. No one, except me!

My twin boys will begin kindergarten in a few weeks, and I’m already plotting how to send them to college. Of course, like most parents, my husband and I have done the dutiful task of setting up a 529 College savings plan for our typical son and daughter.

But doing the same for Troy, who has Down syndrome, would put his future SSI Medicaid benefits at risk. Luckily for Troy, the Achieve a Better Life Experience (ABLE) Act, was just passed in 2014, and now he can save for college too without losing much needed government assistance. Read more about ABLE here.

So, now to investigate college programs.

I know, we’re 14 years out…What can I say? I’m a bit of an obsessive planner. Ok, ok I’m neurotic. I can’t help it. But my investigation into colleges for my son has amazed me!

Did you know there are over 260 college options for Troy, and other people with intellectual disabilities? And he can receive pell grants, work study money, and scholarships to help pay the tuition.

https://www.youtube.com/watch?v=auIYOb_rptQ

The evolution to better higher education opportunities for people with intellectual disabilities really took off with the reauthorization of the Higher Education Opportunity Act of 2008. But keep your eyes and ears peeled (and your legislator on speed dial), because the act is supposed to be reauthorized again THIS YEAR!!! We can’t go backwards.

And on closer look, I noticed that these college programs are not created equal.

They range from Syracruse’s InclusiveU Program (learn more here), which boasts a 4-year certification program where students take the same exact classes as their neuro-typical peers and live with those peers too….to others where students are completely segregated and only learn life skills. Unfortunately, the vast majority of these college programs fall into the latter category.

Now, I’m not complaining. At least higher education, any higher education, exists for my son. But I’m not going to fight for 13 years for my son to be included with his typical twin brother in primary and secondary education, just to turn around and fight again in higher education.

We need to be advocating for more programs like InclusiveU. We also need the Higher Education Opportunity Act passed with more, not less funds for inclusive higher education.

My hope is by the time Troy and Hunter graduate high school in 2031, most higher education programs will be fully inclusive and lead to competitive paying jobs.

Visit thinkcollege.net to find out what college programs are in your state, and start advocating for full inclusion.

The Link Between Sleep and Learning

June 12, 2018 by Courtney

It wasn’t long ago that dad’s snoring was a family joke. New research is now showing that sleep problems can lead to serious issues, especially for our loved ones with Down syndrome.

Evie is only 5-years-old, and already she’s underwent 7 sleep study.

“Her first was at 11 months because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then,” says Evie’s mom Jen Alge. This amazing preschooler, who happens to rock an extra chromosome, was found to develop severe obstructive sleep apnea (OSA) in a follow-up sleep study.

Surgery to remove her adenoids and tonsils brought down Evie’s OSA levels to a more moderate range. “A simi MRI (which I highly recommend) showed how obstructed her airway is, so we started Evie on a CPAP (Continuous Positive Airway Pressure),” describes Alge. Evie’s mom is a disability advocate friend of mine, so I’ve heard her talk about their countless sleepless nights. “She does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on.”

Research out of the University of Arizona links Obstructive Sleep Apnea to cognitive problems.

“Addressing sleep disruptions may be an overlooked way to improve cognitive outcomes in the Down syndrome population,” says Dr. Jamie Edgin, lead researcher and professor of Psychology and Cognitive Science. The study found that individuals with Down syndrome with OSA had cognitive, memory, language, and behavioral issues.

Edgin’s study of school aged kids found those with untreated OSA had a poor ability to learn new rules, and a 9-point difference in verbal IQ scores compared to their peers with Down syndrome without OSA. “A more recent study of preschoolers with Down syndrome found that those with OSA had fewer words and may limit how well they learn to communicate,” explains Edgin.

It’s estimated that 50-100% of individuals with Down syndrome have Obstructive Sleep Apnea (OSA), and most parents can’t predict whether or not their child has it.

This is true in our case. I had no suspicion that my son, Troy, had OSA, but took him in for a sleep study at 2-years-old anyway after reading Edgin’s research.

The American Academy of Pediatrics recently lowered their recommended age for completing a sleep study for children with Down syndrome from 8-years-old to 4-years-old. “The earlier we detect the sleep problems the better. There’s a push in the medical community to decide how early and I argue it should be earlier than 4-years-old,” explains Edgin. “A study out of Indiana found that babies as young as 6-months-old showed divergent sleep patterns.”

I’m glad I didn’t wait to take Troy in for a sleep study. At 2-years-old he had moderate sleep apnea. Troy got his adenoids and tonsils removed, which was enough to resolve his sleep apnea. At almost 5-years-old he’s speech has taken off despite his Apraxia diagnosis, although I’ll never know if that’s because we were so proactive in treating his OSA.

Parents should continue monitoring sleep issues even into adulthood.

“One age group that’s not being studied is adults,” says Edgin. “OSA and other sleep issues has been shown to lead Alzheimers and cognitive declined in typical adults. The same is likely true for adults with Down syndrome. Although they may suffer these declines earlier than their typical peers.”

Edgin recommends that individuals with Down syndrome repeat sleep studies periodically throughout their lifespan. “As people age and put on more weight it can reoccur. Parents need to stay vigilante as they age,” explains Edgin.

Talk to your child’s doctor and decide on a course of treatment that’s best. Not every treatment is meant for every child.

For our family, surgical removal of aenoids and tonsils was enough to resolve Troy’s OSA for now. Evie’s mom, Jen, says she hasn’t seen any difference in her daughter’s language and behavioral outcomes after using the CPAP, but she still thinks the treatment has been worth it.

“Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the CPAP on so that’s a relief. The behavior changes might be more long term given her age,” explains Jen Alge.

Remember sleep is likely just one piece of the puzzle when it comes to cognitive, language and behavioral issues.

“Sleep issues alone do not fully explain the extent of language disruption in individuals with Down syndrome. We found that the good sleep group with DS was also impaired in these areas in relation to their typical peers,” explains Edgin.

“It’s important to understand the link between sleep and learning problems, but it’s not the only thing people need to keep in mind. In the end, language interventions may be more beneficial if done in conjunction with sleep interventions,” argues Edgin.

Interested in learning more about 5-year-old Evie’s OSA treatment? Read here.

Music Therapy for Children with Down Syndrome

June 5, 2018 by Courtney

My 5-year-old son singing Twinkle Twinkle Little Star, while he plays the ukulele. It’s music to my ears! With a dual-diagnosis of Down syndrome and Childhood Apraxia of Speech Troy struggles to speak intelligibly, but somehow he speaks much more clearly while singing.

Speech therapy twice a week, and total speech immersion in an inclusive preschool class has helped Troy make great gains in speech intelligibility. But it’s his love of music and singing that has continued to show me where we should place our efforts.

Music therapy can seem frivolous, but research supports connections between speech and singing, rhythm and motor behavior, memory for song and memory for academic material. Music is processed by a different area of the brain than speech and languages, so a child may be able to more easily absorb information and skills presented with music.

“Music organizes the brain. The child strums the instrument with his right hand, which stimulates the left side of the brain. The left side of the brain is the center of language and speech, which is one reason Troy can speak more clearly,” explains my son’s Music Therapist, Kendra Carson. Kendra has been a certified practicing Music Therapist for 16 years, and has worked with all ages.

Read related post here: Teaching Your Child with Down Syndrome to Read

Kendra says music therapy isn’t about music production. “Music is just the tool I use as a therapist to see what Troy’s non-musical needs are and facilitate non-musical goals,” Kendra says. She incorporates Troy’s speech goals into each session, and many songs like “Old McDonald” incorporate sounds and words that Troy struggles with as a child diagnosed with Childhood Apraxia of Speech.

The American Music Therapy Association defines music therapy as “an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals. After assessing the strengths and needs of each client, the qualified music therapist provides the indicated treatment including creating, singing, moving to, and/or listening to music.”

Even if you don’t have the time or money for private music therapy, you can incorporate music into your daily life to benefit your loved one with Down syndrome. Kendra taught me how to put familiar books to music. For example, Troy has memorized the book Brown Bear, Brown Bear. When we sing the words in the book to the tune of Twinkle, Twinkle, Little Start he can read the book more fluidly. I’ve also helped my children learn my phone number and our address by putting them two easy tunes.

Read Related Post Here: Travels of a Posterior Walker

This doting sister shown below shows off her natural music therapy skills in a social media video that’s gone viral. She shares the joy of music to help her toddler brother with Down syndrome learn to speak his first words. Check it out!

As a parent of child with Down syndrome, I understand that fitting one more therapy in can seem impossible. But many music therapists will come to you, and many local Down syndrome affiliates or county developmental disability boards offer scholarships to families for therapies and other activities.

You can find out more about Music Therapy and find a certified therapist in your area HERE. Does your loved one with Down syndrome love music? How have you facilitated this love of music to help him or her in other areas of life? Share your story with me below.

A Summer of Inclusion at Camp PALS

May 30, 2018 by Courtney

It’s an American coming-of-age tradition: summer sleep-away camp with friends. 20-year-0ld Pete Roll got his chance to soak in all that’s great about summer at Camp PALS.

“It is VERY fun! I got to stay in the OSU dorms like Em and Dan (his sister and brother),” Pete Roll explains. He’s attended the camp every summer for the past three years.

Camp PALS is a week-long overnight camp hosted at 11 universities across the country for young adults with Down syndrome (age 12-30) and their typical peers. PALS mission is to create an inclusive experience where these young adults grow in independence, and build transformative friendships.

Pete attended camp PALS on the Ohio State University campus. As seen in the video above, he enjoyed bike tours, karaoke, and showing off his dance moves.

Pete Roll won the “biggest smile award” at Camp PALS; Ricky Price far right

The Columbus, Ohio Camp PALS Logistical Director, Ricky Price, says camp PALS is more than just a fun time: “Without directly working on appropriate social skills, we are teaching them through inclusion. When Pete arrived at camp 3 years ago he was a shy kid who knew very few people. This year he won the ‘biggest smile award,’ is eager to know everyone, and helped comfort a first-time camper who was upset.”

This is the first time away from home for many of the campers. Price says they help new campers feel welcome with a heart-warming arrival ceremony, which includes 20 new friends welcoming the campers with signs of encouragement, hugs, and music. “It’s an overwhelming experience of acceptance,” Price describes.

The week long activities are different depending on your location. In Columbus this summer, campers enjoyed a Disney movie theme.

“We rented out an entire movie theater and watched Moana. Pete had the biggest smile on his face the entire time the movie played. He rocked at singing Moana’s theme song “How Far I’ll Go” at karaoke night. It takes a lot of courage to get up and sing in front of people. Pete has definitely come far!” Price says.

“My favorite part is hanging out with the COOL counselors like Ricky,” Pete explains. Campers with Down syndrome are matched up with a same-age typical peer who shares the same interests or hobbies.

Part of the week’s activities includes PALS Congratulations project. Campers write letters of Congratulations to expecting or new parents of children with Down syndrome. The letters offer new parents an intimate and thought-provoking look at the beautiful lives of young adults with Down syndrome.

Young adults with Down syndrome are teamed up with a typical peer

The camp experience is invaluable for everyone involved.

“I’ve worked for the PALS program for 8 years. I had a brother with a disability and that’s how I got involved. I started in high school and I wasn’t the most social and outgoing person. Camp PALS was the first time I made a true connection to my own peers. I still stay in touch with my first campers (typical and those with a disability),” Price describes.

He says the message of inclusion and acceptance is seen by the community at-large too. “People will stop us on the street and ask us who we are and what are we doing. We’re showing them that it’s normal to include people with intellectual disabilities in everyday life,” Price explains.

The end of the week includes an inclusive closing ceremony, where campers, friends, family and community members are invited to learn and talk about campers’ experiences. Price says some of the most moving speeches are from parents who share their gratitude and trust at allowing their child to be away from home for the first time. “There’s not a dry eye in the building,” Price says.

“I think Pete loves that he can feel like everyone else! All the campers have the same diagnosis, so he isn’t different. He also loves that he’s away from home on a college campus in an actual dorm. It’s an amazing experience!” says Pete’s mom, Chris Roll.

To find out more about information and where you can attend Camp PALS visit their website here.

PALS opens their program to any individual with Down syndrome ages 12-30, and their typical peers ages 16-30. The only requirements are an openness to the camp experience, an ability to attend to their private hygiene, and endurance to attend to a week of scheduled activities.

Tuition for the camp is $1400, and covers food, housing, supplies and activities for the camper and typical peer volunteer. Reduced tuition and financial aid is available for those that cannot afford the cost of the camp. The PALS Program covered 100% of the financial aid requests made last year.

Price says bringing camp to your local university is as easy as having a sizable population of individuals with Down syndrome and community interest. The PALS program asks for a donation from local organizations to start the program. This shows a commitment and desire to bring the program to your area. Once the there’s an interest, PALS creates a relationship with the local university and recruits high schoolers and college-aged volunteers.