Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

A Summer of Inclusion at Camp PALS

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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.

4 Tips to Prepare for Your Child’s Next IEP meeting

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If you managed to survive your child’s Individualized Education Plan (IEP) meeting unscathed you deserve a MAJOR AWARD. Even if you walked out of that room full of teachers, therapists, and school administrators wanting to hurl, there’s hope.

IEPs are fluid. This is not an end game. Your Child’s IEP “is not a form” according to Supreme Court Justice Chief John Roberts.

Other than your child, you are the most important person on your child’s IEP team. That’s because you know your child best. Likely, you’ve become an expert on your child’s strengths and weaknesses.

If you’re reading this, I know you’ve spent countless hours scouring the Internet for expert advice on inclusion and educational best practices.

Still, an IEP meeting can often feel like an episode of David and Goliath. You playing the part of David.

So, now is the time to get organized. Rally the troops, because this year’s IEP meeting is going to be EPIC!

Here’s 4 steps to make your child’s IEP meeting run as smoothly as possible: 

  1. Never go alone to an IEP meeting!
    • An IEP team meeting can include countless school personnel, often with their own agenda.
    • If you can afford it, find an non-attorney special education advocate in your area by searching the Council of Attorney and Advocates directory here. A good advocate can cost you anywhere from $200-$1000, but it may be worth your weight in gold to have someone in your corner who knows the law.
    • If you can’t afford an advocate, invite an friend, pastor, neighbor….anyone who is less emotionally invested than you are and who can take good notes.

2. Organize all those documents CHRONOLOGICALLY!

  • As a former teacher, I realize failure to document can come back to bite you in the “you know what.” Keep all of your child’s records – from evaluations to letters home to IEPs to that adorable little Mother’s Day painting he made you this year. But how?
  • First, go out and buy the BIGGEST 3-ring binder you can find.
  • Display the most INNOCENT picture you can find of your little rugrat on the front, and have a bio of how amazing he is on the inside cover. Click here to learn how to make a bio like my son’s. Bring this with you to EVERY IEP meeting (make sure you hold the folder picture-side out–for all to see)
  • MOST IMPORTANT: Organize your documents chronologically! I’ve tried creating categories for my son’s IEP folder, but I soon realized the categories are ENDLESS (IEP, ETR, Behavior, Communications, Resources, etc). Also, some of the documents could really be under more than one category (which category do you choose then?).

  • My best advice, create a table of contents with the following: date, author, type, significance. Number each document and place them in order of date. Then you can quickly look back at your table of contents to find your child’s “1st grade ETR”. 3. Save all communications!

    • Communication is EVERYTHING! Save it all: emails, letters home (see step 1), even text messages.
    • At the end of each email I send to school personnel I always write: “please add this to Troy’s educational record.” Emails can often get lost in the ether, but they can be very powerful if you need to make a case for a change in your child’s IEP later. Make sure you make them a part of your child’s official record.
    • The easiest way to save emails if you don’t have a physical copy and don’t want to print it out, is through email files. Most emails (I use Gmail) allow you to create folders.
    • I have a folder for Troy in my email, and even have sub-folders (for behavior, IEP, and therapies).
    • Any time I get an email I save it in the appropriate folder. I even email text messages to my email to save.
    • This is especially important if, for instance, you keep getting an email about your child’s behavior. Keeping a paper trail (or in this case, an email trail) will be crucial for getting your child the help they need. Most schools require evidence of a continued problem before they’ll shell out money for say a formal behavior assessment.

      4. Save all resources in LiveBinders!

      • I learned about LiveBinders from a dear friend who is a professor of bicultural-bilingual studies (so you can use this for non-IEP topics too). If you love reading up on expert advice about Down syndrome, inclusion, special needs law, anything really…then you will be SIMPLY AMAZED by LiveBinder!
      • It’s an online, find-it-whenever-and-wherever-you-need-it organizational masterpiece. My “binders” include: inclusion and law resources, letters to school, modifications to curriculum, literacy, APPs, Introducing Troy to classmates
      • Whenever I find something spectacular on the Internet, I copy the URL and paste it into the appropriate “binder.” Then whenever I have an issue with a particular topic, I can go back to my binder and find resources.
      • You can have up to 6 FREE binders before LiveBinder starts charging you. Check it out!

Let me know what you think of these 4 tips below. And tell us how you make your child’s IEP meeting run like a well-oiled machine! Comment below.

Extended School Year: A Necessary Part of Inclusion?

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My son has a late October birthday, so he’ll spend three years total in preschool. In addition, he’s receiving Extended School Year services this summer. 

It wasn’t easy trying to convince the school that my son needed extra help in the summer. Even though Extended School Year (ESY) is a protection under the Individuals with Disabilities Education Act (IDEA), many school districts push back when parents request it. ESY is a service designed to help students with disabilities maintain all the skills they learned during the school year. The service should be in the child’s Least Restrictive Environment (LRE) and individualized to their needs. These last two aspects of ESY is where many schools seems to stray from the law. Many ESY services can be far from home, not with typical peers, or not individualized. Depending on where you live you may have heard a variation of our school’s argument against ESY:

“ESY is for students who’ve fallen behind. Troy doesn’t need ESY.”

My son at school this summer

This was the argument my son’s teacher made the first time I brought up ESY. Being a new mom, and not yet knowledgeable about the law, I acquiesced.

But the summer after Troy’s first year in preschool, I attended a Wright’s Law Seminar. The seminar highlighted special education law and IDEA. ESY came up and it piqued my interest. Peter Wright mentioned that a student doesn’t have to fall behind to get summer support. I also received several special education law books, that confirmed what Wright said.

Year 2 of preschool, I was ready to argue for ESY!

In January, I asked the teacher again about Extended School Year for Troy. She used the same argument as the previous year. Understandably, ESY costs school districts money and time; something that most don’t have. Although I love his teacher and the services my son had received so far, I wasn’t about to back down.

My son practicing calendar time during ESY

I made sure I got everything in writing, and I mentioned that by law Troy could receive ESY for “emerging skills” that he had not mastered on his Individualized Education Plan (IEP). I asked that the school begin collecting data to see if Troy in fact needed ESY. The teacher forwarded my email on to the principal. During our IEP meeting I received push back, but they admitted he had not mastered his IEP goals and ESY may be an option.

Secretly, I did a happy dance! It’s not that I’m super excited about Troy spending time at school this summer, but I wanted to set a precedent. 

On his way to summer class

We’re military and move a lot. I wanted to make sure ESY was in his IEP from the very start of his educational career. This might make it easier to get summer services at the next school Troy attends.

Plus, even though Troy is just in preschool, he still needs extra help. I liked the idea of Troy practicing routines, classroom behavior, and working on skills like conversational speech and math in the summer. Extra help in the summer makes inclusion more seamless during the school year.

Then my local Down syndrome mom friends started asking me how I got ESY for Troy. I explained my approach and pretty soon they started asking for ESY services for their child.

We started a local Down syndrome ESY Revolution! 

The teachers and administrators realized we were working together. Pretty soon all three students with Down syndrome were grouped together into a cute threesome in my son’s teacher’s class. They’re all working on different skills, but Troy’s teacher can use the group setting to make the summer class more like a real class. It’s worked so far!

Does your child get Extended School Year services? Do you think it’s sufficient and makes a difference in your child’s progress? Let me know about your experience below!

 

 

 

How My Twin Sons’ Tee-Ball Games Became Great Practice for Inclusion

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Like many 4-year-olds, my twin boys, Hunter and Troy, love baseball! But when it came time to sign them up for tee-ball, I couldn’t help but be anxious. 

Typically, parents wouldn’t bat an eye at signing their twin boys up for the same tee-ball team, but our situation is not so typical. Troy has Down syndrome, and I wasn’t sure how he would be received.

Should I call and tell the coach that one of my boys’ has a cognitive disability? During the first practice should I describe Troy’s low tone, and how it may impact his ability to keep up? During the games should I apologize for my son’s performance?

In the end, I didn’t say anything. 

We play backyard baseball all the time. Troy is as good, if not better, than his typical twin brother at hitting, throwing, and catching the ball, which is to say they both suck as much as any 4-year-old that has never played. I hoped his team would accept him as any other first-time player.

Hunter and Troy with Coach Kyle

We showed up to the first practice, and I could tell Troy was really nervous. The fact is, even though he’s as good as any other kid his age, he hates crowds. I hear about other kids with Down syndrome loving the spotlight. Troy is the opposite. If you laugh or cheer at his successes, he shuts down. I’m not sure if he thinks people are laughing at him, or if it’s too much sensory overload.

His seemingly lack of interest in the game was predictable, but still bummed me out. I wanted his team to see the enthusiastic ball player I watch in our backyard. I did mention to his coach that Troy has Down syndrome, and he may or may not decide to play. “That’s ok, right?” I asked with bated breath.

Coach Kyle, a laid-back father of two, said “This is my first time coaching. I think we’re all nervous. Let’s give him some time to get use to his team and the game.”

This is inclusion at its finest, and Coach Kyle seemed to come by it naturally. There was no hesitation to include Troy. Just an open-mind, and support if needed. 

Troy playing 3rd base

I wish I could say the team’s acceptance of Troy made his apprehension to play go away. It didn’t. He practiced with the team, he even played the field a few innings each game, but when it came time to hit the ball stage fright took over.

It took 5 games for Troy to finally hit the ball. But when he did you could see the pride and pure happiness in his face!

More importantly, you could see the excitement in his teammates and their parents’ faces! They were genuinely excited to have Troy as part of the team, and more important see him succeed.

Troy’s first hit

One particular player, 5-year-old Michael, always made a point to talk to Troy during the games he didn’t play. When Troy played his first full game, you could see the impact it had on Michael. He was so proud of his friend.

Although most of the kids on Troy’s team are too young to understand Troy’s difference, there’s still an important lesson to be learned by his presence. I know these sports encounters will become less as Troy gets older. We expect that Troy will play on typical sports teams, as well as in the Special Olympics. But its these early encounters that change perceptions of individuals with Down syndrome, and opens doors for Troy later. His teammates will one day be employers, teachers, or friends that will remember that Troy is more alike than different.

 

Promoting Inclusion Through Universal Design for Learning

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Students with Down syndrome face many barriers in education. My son is only in preschool and he already deals with teachers’ preconceived notions of Ds, improper assessments of what he knows, and difficulty communicating his needs and wants.

Supported by research and federal law, Universal Design for Learning (UDL) turns the traditional one-size-fits-all model of teaching on it’s head. UDL breaks down barriers to education, and creates a path to inclusion.

At its core, UDL encompasses three principles—”that instructors should provide students with multiple means of representation, expression, and engagement. In lay terms, this means that, to the extent possible, instructors should (a) provide content or materials in multiple formats, (b) give learners multiple ways to show what they know, and (c) use multiple methods of motivating learners,” according to the Academy of American Colleges and Universities.

Many good teachers do UDL without realizing the terminology for what they’re doing. When I taught in Utah I used to have my history students do a year-long project. Every student got to choose if they wanted to work alone or with a group. They also got to choose their own topic, as long as it fit the year’s theme, as well as the medium (performance, mini-documentary, website, paper, or science fair-type display board). If you would have asked me then how I came up with this UDL curriculum, I would have said “what’s UDL?”

So, how can teachers implement UDL in their classroom to create a path of inclusion for students with Down syndrome and other disabilities? Start here:

https://www.youtube.com/watch?v=MOUdmzaZrc8

 

First your child’s strengths should be evaluated, along with how they learn. Teachers should focus on the “big picture” of what they want students to know, and the different was to assess what students have learned.

The 3 Principles of UDL include: 

  1. Giving learners different ways to acquire information
  2. Giving learners different ways to demonstrate what they’ve learned
  3. Tapping into learners different interest, challenging them appropriately, and motivating them to learn

I recently took a fabulous workshop on UDL at the National Down Syndrome Congress Conference in Sacramento. Some of the ideas for our students with Down syndrome included technologies like text to speech, apps that change the reading level of books, Google classroom, word prediction for writing, graphic organizers like Kidspiration, and personalized videos to show what your child knows.

Check out this link for specific apps and ideas to share with your child’s school.

Federal policy under Every Student Succeeds Act and the Higher Education Act, encourages the use of UDL to reach all students. These updated federal laws state that UDL helps all students significant opportunities to access the curriculum. This is not just a nice way to teach, but a way to follow the law. Ask your child’s teacher and IEP team today about how they plan to implement UDL to ensure your child is included in a meaningful way.

How does your child’s class use UDL to reach all students? Let me know below. Below are some books you can gift to your favorite teacher.