Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

Letter to My Son’s New School

by

A parent is often a child’s best advocate. We usually know our child’s history and potential for learning better than anyone else. But too often, when it comes to a child’s Individualized Education Plan, parent concerns are not inserted into the conversation or official record.

The Individuals with Disabilities Education Act (IDEA) and the recent Supreme Court Case, Endrew F., stresses the importance of parent participation at the IEP table. Parents are supposed to be equal partners of the IEP team, but often the IEP document is skewed to the school district’s point of view.

Read Related Post: Endrew F. In Action at the IEP Table

To ensure your point of view is injected and carried out, include a Parental Statement every year. Attached this letter and a bulleted list of concerns to your child’s IEP. You can even have them copy and paste your input into the online IEP form. There’s no reason why they can’t. Read the one I sent to my child’s new school, in a new state. Your letter could talk about the progress or lack of progress your child has made in and out of school since his/her last IEP.

Feel free to use my format, and change it to your child’s situation.

Parental Statement for Troy

To Whom it May Concern:

Our 5-year-old son, Troy, is a congenial, kind, and bright young boy. We’re nervous about him starting kindergarten, and we expect he will be too. Troy has Down syndrome, and although our expectations for him are the same as his typical twin brother, Hunter, we fear that well-meaning community members may have little to no expectations for him. We expect that Troy will be fully included in the academic and social aspects of k-12 education with proper supports. Our long-term goal is to have Troy graduate high school with a regular diploma, prepared for post-secondary education or integrated, competitive employment. With the national graduating rate for students with disabilities around 50%, and unemployment at 80% for people with disabilities, this may seem like an impossible goal to reach. But we understand that the law supports placement in general education first with supports, and all the research proves it works. We’re betting on our son, because we know he’s capable of contributing meaningfully to his community.

My husband is an emergency medicine doctor with the United States Air Force, and this is the third state Troy has lived in in his short life. I stay at home, as well as advocate for other families in the special education process. The move across country is sure to be tough on Troy. He has a hard time with change. He thrives on routine and clear expectations. We’ll try to ease the transition with social stories, and keeping our daily routines. We expect that kindergarten transition will be hard as well, but Troy loves school. If proper transition supports are set up and carried out with fidelity, we know that he will do well.

Troy has been in an inclusive educational setting since right before his 3rd birthday, and has received early intervention since birth. He and his typical twin brother have shared the same teacher for three years in an Ohio public preschool. The class was fully inclusive, but Troy often had the most significant disability in the preschool class each year. Even so, he did very well in this setting, and exceeded teachers’ academic and social expectations. Speech and OT were pushed into the preschool class, and Troy left Ohio well prepared for kindergarten. He knows how to write his first name (albeit messily), use scissors, color, identify all his letters, over 20 sight word recognition, one-to-one correspondence from 1-10, patterning, and much more. Even more important, he understands the routines and expectations of a classroom, and how to socialize with other students. To gain these skills, Troy needed explicit teaching and specific support in the general education classroom.

Although Troy has no medical problems, he has been diagnosed with Childhood Apraxia of Speech. Using push-in speech services, as well as private speech therapy, Troy has grown by leaps and bounds when it comes to functional communication. Troy is saying many more novel phrases without prompting. I can understand most of what Troy says, but strangers often have a hard time understanding him unless the conversation has context or visual clues. Troy does have many common phrases (like “Yes, I do” or “I not do that again”) that are very intelligible. Often practicing functional phrases, with visual cues, that will be used often in the classroom is the best way to improve Troy’s intelligibility.

Positive behavior supports work best for Troy. As you know, behavior is communication, and Troy is always trying to communicate something. He loves attention, and will work hard to gain your attention even if it’s negative in nature. Troy doesn’t have a mean bone in his body, so most of his problem behaviors are attention-seeking in nature. The few behavior issues Troy had in preschool were remedied with continual visual cues or giving him positive attention. Some issues included eloping to his favorite therapists office. Teachers solved this by putting a “stop” sign at the classroom door, and pushing in speech therapy instead of pulling it out. Troy loves circle time, and during free play he would often want to take down the pictures of his classmates, and use the teacher’s pointer to look at them. This issue was solved by creating his own book of classmates’ pictures and giving him his own pointer. Troy loves to feel helpful, and be a leader in class. Troy also needed to explicitly be taught classroom play-based skills, and will likely need help with this in a new classroom.

Read Related Post: 3 Words That Will Transform Your Next IEP Meeting

We’d love for Troy to have an experienced, yet open-minded kindergarten teacher. Someone who has high expectations for our son, and empathy for our situation. I taught middle school and high school students before I stayed home with my twin boys, so I understand the challenges of meeting the needs of every child. Still, we know the general education teacher is the content expert, and the best teacher to serve our child, with support from special education teachers or paraprofessionals. We know his teachers will need a lot of support. I hope to advocate for Troy’s teachers, and volunteer weekly.

We have high expectations for our son and the school he attends. We expect that his IEP will be standards based, and include all the accommodations and services he needs to make progress in light of his disability. We want IEP goals that are appropriately ambitious, and ensure that he is exposed to the same content as his twin brother. I will lean on school personnel as the experts in content and specially designed instruction, as I hope they will lean on me as the best advocate for Troy. I’m excited to work with Troy’s teachers to successfully include him in general education with supports. I know this will not only have a positive impact on Troy, but also the other students in the class who will one day be teachers and employers who will remember Troy and hopefully work to change the current dismal outcomes for people with disabilities.

We consider this letter part of Troy’s educational record, and the IEP document incomplete without this letter attached. I appreciate your time and consideration! I look forward to working with you!

Thank you,

Courtney

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

by

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.

Everything I Need to Know About Inclusion I Learned in Preschool

by

The sign over my twin sons’ preschool states: “Where Wonder Begins.” I was filled with euphoria reading those words three years ago, when the boys were starting preschool just shy of 3-years-old. I believed I had hit the jackpot. An inclusive public preschool for my son with Down syndrome right out the gate. A place where he would not only belong, but would thrive in “wonder.”

My husband always giggles when we walk past the sign for an IEP meeting. He jokes that no sign could ever match my idealism and pragmatism of inclusion for my son with Down syndrome. He’s right, of course.

Read Related Post: Building the Perfect IEP

Don’t get me wrong, my sons’ preschool experience was great. Attending their third and last preschool performance and last day festivities, I couldn’t help but sit in wonder at how much they’ve grown. Both are equally ready for kindergarten.

But these past three years were a huge learning curve, mostly for myself. I went into my sons’ preschool experience with one notion of inclusion and advocacy, and left with a completely different one. I assumed if you found the right school or great teacher, that everything else would fall into place. Inclusion done right, is a lot more than that. Most school’s have a system in place for special education, and they’re not eager to provide a different path unless you politely push. If you don’t speak up and ask questions, your child might not get what they need for their “individualized” education plan. You have to keep the lines of communication open with the IEP team, learn to collaborate and compromise, and stand firm on specific ideals that you hold dear.

Preschool is a time of exploration for children. I used the time for the same purpose when it came advocacy. Here’s what I learned:

1. Every school, teacher, and parent’s definition of inclusion is different: When looking for an inclusive school, don’t believe just one source. I made that mistake when we move to the area. A few parents with children with Down syndrome said this district was the most inclusive. I soon learned that, although the preschool is half typical kids and half kids on IEPs, K-12 is much different. Most students with significant disabilities spend the majority of their day in a self-contained class, starting in kindergarten.

Talk to other parents, but also look up the school’s mission statement, call the district special education director and ask about the district’s policy on inclusion, tour the school and ask about the continuum of placement. You could even look at Due Process results for the district to see if they are violating Least Restrictive Environment regulations. I did all of this for our new school, in a new state.

Read Related Post: A Letter to My Son’s New School

2. Use this time of exploration as on-the-job training: Even though I was an educator and sat in on many IEP meetings, I had never sat on the other side of the table as a parent. I soon realized that I had a lot to learn about the IEP process. At first, I focused solely on building strong IEP goals for my son, thinking that was the ticket to academic and social success. I soon realized that IEP goals only scratched the surface of access to a truly inclusive experience. Present levels of performance, parental concerns, specially designed instruction, accommodations, progress monitoring…I essentially ignored all of these things the first year of preschool, but soon realized that the only way my son was going to meet his IEP goals was to ensure those other parts of the IEP were clear and strong.

I ended up taking a year-long special education advocacy course from the Council of Parent Attorneys and Advocates (COPAA), to learn the ins and outs of the IEP process. I don’t regret it! I would encourage you to take workshops and read books on inclusion, as well as the IEP process. Knowledge is power! What you’ll find out is parents have A LOT of power when it comes to the IEP process. Use it to your child’s advantage.

3. Failure is not fatal in preschool: Research shows preschool leads to better academic and social gains in kindergarten and beyond, in part because children have a chance to practice in the process of school. The pressure is off in preschool. This is true for advocacy too. Allow yourself to dive deep into the IEP and special education process. Learn all there is to know before your child starts kindergarten, and don’t be afraid to make mistakes.

The beauty of preschool is that you still have time to develop educational expectations for your child and their school. There’s no deadlines, tests, or real pressures to contend with. Enjoy the time with your child, while doing your research. You’ll go into kindergarten having practiced the process, and ready to advocate for what your child needs.

I’m glad I took these three years to play with the idea of inclusion and what I want for the next 13. What is preschool like for your child with a disability? Comment below with your story or tips for other parents.

A Summer of Inclusion at Camp PALS

by

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.

A Mother’s Day Wish

by

These are the messy years of motherhood for me.

Strips of paper with scribbles on them are strewn about the house. So are wet socks, dirty diapers, overly-loved books, and legos.

My 3 vivacious children create such a constant eruption of clatter that the neighbor often comments on the chaos.

These may also be some of the most magical years of motherhood.

My type-A personality and independent spirit sometimes prevents me from fully embracing the mess that is motherhood. Still, I’m starting to realize my magical days may be numbered.

Our son, Troy, has Down syndrome.

We talk about Down syndrome often in passing, but it enjoys a backseat to the craziness of having 3 kids under 5-years-old.

Troy’s typical twin brother, Hunter, seems immune to the term. Our baby girl, Cora, blissfully loves and hates Troy in any given moment throughout the day.

We live in a bubble. A safe and simple safe-space.

In our day to day life, no one seems to care about Down syndrome.

We love Troy; he loves us. It’s that simple.

But children grow, and life gets complicated.

Down syndrome morphs into school placement, IEPs, LRE, FAPE, inclusion or exclusion. Kids question. Teachers negotiate. Parents complain. Our family bubble takes on a slow leak.

 So this Mother’s Day I wish to cherish and immortalize these days.

I wish to remember these days as I fight to have Troy included in school, community, and work.  The simply messy days where everyone is ignorant to the brutal world that sometimes overtakes unique families like ours.

These are the days!