A Letter to the Teacher of My Son with Down Syndrome

Dear Teacher,

Tis the season for organizing classrooms, lesson planning, and memorizing new names. When I was a teacher, this time of year brought a mixture of excitement and trepidation. Those emotions remain the same now that I’m a parent to a child with Down syndrome.

Instead of fearing that I would be ill-equipped to deal with a whole new group of students with different needs, I now dread that my son’s teacher will fear Down syndrome and what it means for his or her classroom.

I know, from personal experience, that even a Master’s in Education does not always fully prepare teachers to meet the needs of all learners. Teacher training can sometimes be a one-size fits all approach, until the student-teacher is thrown to the wolves (I mean, students LOL). But here’s the most important thing you need to know to meet the needs of my son who has Down syndrome:

You don’t need a Master’s in Education to care and have an open-mind. Those two characteristics alone can lead to my child’s (and every other child’s) success in your classroom.

5 Things to Remember When Teaching a Student with an Intellectual Disability: 

1. He’s more alike than different:

Troy (left) with his typical twin brother, Hunter (right)

Imagine if the color of your eyes was the determining factor of whether you were cut out to be a teacher. Not cool, right? Troy has a right to the same educational opportunities as his typical twin brother. But the instant a teacher looks at my two boys side-by-side, many have already made a judgement that Troy just can’t cut it in a regular class.

“Different” is all about perspective. To you, my son may not fit the typical model-student mold, but to me he’s just as inquisitive and bright as his typical twin brother. Stop looking at those gorgeous almond-shaped eyes and his cute toddler-like stature; this kid wants to learn. Expect that he wants to act and learn like his typical peers, and you may be surprised at what he can achieve.

2. He needs you to believe in the power of “yet”

Our mindset determines the way we see the world. I want Troy’s teachers to have a “Growth Mindset.” This is the power of believing Troy can learn and improve. I’m not delusional. I understand my son has an intellectual disability, and will likely not “keep up” with his typical twin brother. But with a growth mindset it’s ok if he doesn’t keep up, because he has the power of “yet.”

He may not read and write when his typical peers do, but that doesn’t mean he’ll never read and write. It also doesn’t mean he deserves low expectations and subpar educational experiences. Whenever you feel the urge to say: “Troy can’t _______,” instead say “Troy can’t __________ YET.” This will change your entire perspective about Down syndrome and what my son can achieve.

3. He understands when he’s being segregated

Even with 40 years of federal law and research to back up full inclusion for students with intellectual disabilities, schools continue to segregate students like my son in “specialized” classes. Teachers and administrators say this is what’s best for these “special” students, but the research proves it’s not.

Listen, I understand that inclusion is hard and scary. But my son doesn’t deserve the path of least resistance. He’s smart enough to know that he’s being segregated from his typical peers, and he’ll live up to whatever expectations you set (low or high). We must prepare him for life, and as far as I know there’s no “special” grocery shops, apartments, or jobs when he graduates.

4. His typical peers have a lot to gain with his presence

Many teachers argue that having a student with intellectual disability in their class will be detrimental to their typical students. I disagree wholeheartedly! In fact, research shows that typical student achievement either stays the same or increases with the presence of diverse-ability students. The reason is simple and has been known for generations: The best way to understand a concept is to teach it.

What a wonderful opportunity to teach empathy, and increase achievement levels of all your students. In a meaningful inclusive classroom, all students feel valued for who they are. High achieving students can reinforce what they’ve learned by teaching others, and students like my son can teach those same students that life is about more than just high grades and test scores.

5. More than anything, he needs an open-minded teacher

You can know all the latest teaching strategies to optimize an inclusive classroom: Universal Design for Learning, Process Oriented Guided Inquiry Lessons, Reality Pedagogy, etc. But if you don’t have an open-mind none of these fancy strategies will work. I’d rather have a teacher who’s clueless about all of the above, but truly accepts Troy and believes he can learn than the smartest teacher around who thinks my son is helpless.

It’s up to you to teach other students that my son’s disability is not to be feared. They’ll be watching you!

And remember, the parent of students with disabilities want their child’s teacher to succeed. Come to us for advice. We are the expert of our child, and we can be an invaluable asset to your classroom success. We appreciate you!

We know you may be scared, but our child and your students are worth it! Take the challenge and be the change that’s needed in this world!

With Much Appreciation,

The Parent of a Child Who Wants to be Included

Using a Recent Federal Court Case at Your Next IEP Meeting

Last week 15-year-old Luka won a years long fight for inclusion in his Tennessee public school. The Sixth Circuit Court of Appeals ruled that Luka’s right to a Free and Appropriate Education in the Least Restrictive Environment was violated when Hamilton County School District attempted to segregate Luka in a separate school for part of his school day. Luka’s family eventually decided to place him in a Montessori School, and the federal court also ruled the district must pay the family for the private school tuition.

Read Related Post: Teen with Down Syndrome Wins Inclusion Case in Federal Court

The decision is a watershed moment for students with Down syndrome in particular seeking to have an inclusive educational experience. Luka’s mother, Deborah Duncan, now wants other families to use the court decision to fight for inclusion at their child’s next IEP meeting.

Below are tips from Deborah Duncan on how to use the case at your next IEP meeting:

“L.H. v HCDE reaffirms the Individuals with Disabilities Education Act’s (IDEA) strong preference for mainstreaming: “To the maximum extent appropriate, children with disabilities, . . . [must be] educated with children who are not disabled,” and separated “only when the nature or severity of the disability . . . is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” § 1412(a)(5)(A). The ruling of the U.S. Sixth Circuit Court of Appeals is the “law of the land” in Tennessee, Kentucky, Ohio and Michigan and is “persuasive authority” to the other circuit courts covering all other states.

Here are the important points affirmed in this case that can apply in any IEP discussion:

  • Parental participation in the process of developing the student’s IEP “must be more than a mere form; it must be meaningful.” Parents’ views of the appropriate educational supports and services must be reflected in the IEP.
  • A free appropriate public education (FAPE) has two requirements that are relevant here: the school must prepare an “individualized education program” (IEP) for the disabled student, § 1414(d)(1)(A); and that IEP must provide the FAPE so as to educate the disabled student in the “least restrictive environment” (LRE) possible, § 1412(a)(1), (5).
  • Students with disabilities are not required to “keep up” (work at the same pace or on the same materials) with non-disabled peers in order to remain in the regular education classroom. 

“The three-judge panel of the Sixth Circuit affirmed: “What the IDEA implies, the case law makes explicit: a child need not master the general-education curriculum for mainstreaming to remain a viable option. Rather, the appropriate yardstick is whether the child, with appropriate supplemental aids and services, can make progress toward the [] IEP[’s] goals in the regular education setting.”

“. . . a placement which m[ight] be considered better for academic reasons m[ight] not be appropriate because of the failure to provide for mainstreaming.”

  • “Special education” is supplemental supports and services that allow students with disabilities to access the general education curriculum. “Special education” is not simply an alternative to the general education curriculum. The use of a peer-reviewed curriculum and instructional approaches is required by the IDEA.

“The new curriculum [used in the segregated setting] was different qualitatively as well as quantitatively . . . The Unique Learning System (ULS) program follows Common CORE standards but it is not peer-reviewed, as the IDEA requires. .  .”

  • “Special education” is not a separate location, and schools that require students to attend a separate location to receive special education services may be violating the IDEA.

“The LRE is a non-academic restriction or control on the IEP . . . that facilitates the IDEA’s strong “preference for ‘mainstreaming’ handicapped children,” Rowley, 458 U.S. at 181 n.4. “To the maximum extent appropriate, children with disabilities, . . . [must be] educated with children who are not disabled,” and separated “only when the nature or severity of the disability . . . is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” § 1412(a)(5)(A).”

  • The segregated Comprehensive Development Classroom (CDC) special education setting was found to be specifically “non-mainstreaming” (“intentional segregation”), lacked a curriculum that was peer-reviewed, “set very low educational expectations,” was not tied to any state standards, “provided no report cards or homework, and it had certain teachers in uncertified roles.”
  • Parents “surely know the student the best, regardless of any expertise.”

“If the law were that a court must defer to the opinions of [the teachers and staff] who spend the most time with the student and presumably know him best, then there would be no place for experts. Moreover, parents could never prevail because the student’s teachers will always spend more time with the student or know the student better than the parents’ hired experts. On the other hand, the parents spend more time with the student and know the student better than any teacher. Taking HCDE’s argument to this ultimate end, the district court would actually defer to the student’s parents, who surely know the student the best, regardless of any expertise.”

Read Related Post: Endrew F. In Action

If you find yourself in an IEP meeting with school system administrators who are unfamiliar with the requirements of the IDEA and its supporting case law, it may be best to suspend your IEP meeting and request a meeting with the director of special/exceptional education for your school district along with your child’s school principal to discuss your common understanding of the requirements of the IDEA. If you find that they have a different interpretation of the law, you may refer them to the state department of education to confirm its understanding. If you still cannot secure a common understanding, contact a local special education advocacy center or a special education attorney. (See the Council of Parent Advocates and Attorneys (COPAA) website.) Having a common understanding of the basic rights and responsibilities of all parties in the IEP process will result in a smooth IEP process and a successful educational program for your child.”

Read the full decision from the Sixth Circuit here.

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.

 

Teen with Down Syndrome Wins Inclusion Case in Federal Court

Breaking news!!!! I’m so happy to announce the Sixth Circuit Court of Appeals affirmed a lower court’s decision that 15-year-old Luka’s school district violated the teen’s rights to a free and appropriate education in his least restrictive environment. In a lightning fast decision, the 6th Circuit Court also ruled that Hamilton County Department of Education in Tennessee must reimburse Luka’s family for the cost of private school education.

Luka’s mom, Deborah Duncan, said today’s decision validates years of fighting for Luka’s right to be a fully included member of his school community. “Hopefully this will prevent other students from facing segregation, empower families to insist on real educational services and measurable outcomes for their child with a disability, and make it impossible for schools to continue discriminatory practices against students with disabilities,” Deborah says of the decision.

Read Related Post Here: Ninth Circuit Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

Hamilton County School District in Tennessee wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Luka’s mother Deborah Duncan explains. Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori school where he continues to attend today.

Deborah with her son, Luka

After paying private school tuition, $75,000 dollars in legal fees, and a five year battle with the school district the family eventually prevailed at the district court level in Tennessee. The District Court ruled that a self-contained class is more restrictive than necessary, but that the family would not receive reimbursement for the private Montessori School.

Read Related Post Here: 7 Research Studies You Can Use at Your Child’s Next IEP Meeting to Win the Fight for Inclusion

Then Hamilton County Schools filed an appeal to the Sixth Circuit Court of Federal Appeals. “They have no ground to land on, but it allows them to delay reimbursement of our legal fees. They just look vindictive and have spent a lot of taxpayer money just to violate the law. We finally decided to cross appeal for reimbursement of the Montessori school private tuition,” Deborah explains.

Now the Sixth Circuit has ruled that the district must pay the family for all the years of private tuition they incurred, and upheld the lower court’s decision that Luka’s rights to FAPE in LRE were in fact violated. Today’s decision will impact students with disabilities in the states of Tennessee, Kentucky, Ohio, and Michigan.

Read the full text of the decision here.

15-year-old Luka

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.

Fostering Acceptance in the Classroom

The first couple of weeks of school is what teachers like to call the “honeymoon phase”. When I taught, I remember students always being on their best behavior. But soon students will become more comfortable and a classroom hierarchy will develop. Students begin to notice those that may be different, and will start making comments or asking questions.

As a parent of child with Down syndrome, I’ve often wondered how I would formally introduce my son to his typical peers. My son, Troy, has had the same preschool teacher for the past two years, and his teacher and I have a decided not to do any formal explanation of Troy’s differences. He is more alike than different, after all. And the 3 and 4-year-olds aren’t concerned about labeling his difference.

When and how should parents formally introduce their child in a classroom setting, and promote disability awareness and acceptance? 

First, let’s talk about what NOT to do. You might have come across the use of disability simulations: marshmallows in the mouth to simulate low tone and lack of intelligibility, hands in mittens to simulate poor fine motor skills, blindfolds to simulate–well, being blind. Do you notice what all these simulations highlight?

What a person can’t do, rather than how individuals with disabilities successfully adapt to their environment with the right modifications and supports.

Instead of promoting empathy and awareness, research studies show disability simulations actually promote fear, apprehension, and pity towards their classmate with a disability. Also, because the simulation is only for a short time, it’s hard for typical students to truly experience the classmate’s limitations in a meaningful way.

Awareness Activities in Grade School

Many teachers and parents like to take a more broad approach to awareness of differences in lower grades. For instance, in kindergarten through 2nd grade you may not even mention the term “Down syndrome” or “Autism.” Many parents decide the discussion shouldn’t single their child out, but foster acceptance of all students. Children’s books are a great way to foster acceptance of people for who they are. Here’s some examples:

“My Friend Isabelle” by Eliza Wilson: I love this book, because it starts with two friends that have so much in common, but also talks about differences. The reader only finds out that one character has Down syndrome by reading the jacket note at the end of the book. It also has a guide to help teachers and parents incorporate the book into a classroom lesson. Watch the YouTube click below for a video version of the book.

“The Day the Sheep Showed Up” by David McPhail: About farm animals who had never met a sheep before. The sheep teaches them that they are more alike than different. Great metaphor for accepting those that are different, and fabulous for new readers.

“King Louie and His Marshmallow Kingdom” by Louis Rotella: About a little king who rules over a kingdom where the sun always shines and every meal is a picnic. Louie explains to his friends that he loves to do kid-things, even though he’s different. This is one of my all-time favorites!

Awareness Activities with Older Students

Books can also be used with older students, and some may actually define a disability. But more hands-on or project-based activities are also fun at this age. Open discussions about what students already know about disabilities (or think they know) is imperative. Prior knowledge allows teachers and parents to assess where to start, as well as any preconceived notions students may have. Discussing inclusion is also important at this age. All kids want to be included.

The Governor’s Council for People with Disabilities did a fabulous disability awareness campaign in Indiana and posted all of their lessons here. Some of their ideas include:

  • Students create a class motto for inclusion
  • Anonymously write questions students have about disability and difference, and have those questions read and answered as a class (or in private)
  • Create a classroom mural that depicts what an inclusive class, school, and community looks like
  • Perform a simple skit showing appropriate and inappropriate ways to interact with classmates with disabilities: people’s first language, asking before you help someone, inviting classmates to special occasions, treat your classmate the way you want to be treated
  • Show a movie or show that depicts someone with a disability as the main character
  • Evaluate their school or local business to see if they accessible for people with disabilities. If they’re not, come up with a plan to change that.
  • Invite a sign language interpreter to teach students some simple signs.

What are you planning to foster acceptance in your child’s classroom? Add some ideas in the comments sections.

The following are some other books that may help you foster acceptance in the classroom:

Tennessee Boy’s Inclusion Case Goes to U.S. Circuit Court of Appeals

The Sixth Circuit Court of Appeals has agreed to hear oral arguments in a case involving a student with Down syndrome, and the school district that refused to provide him a free and appropriate education in the least restrictive environment. Like many special education court decisions, the results of this case could either give families courage to fight or could be huge potential setback in the battle for inclusion.

Hamilton County School District in Tennessee wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Luka’s mother Deborah Duncan explains. Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori school where he continues to attend today.

Deborah with her son, Luka

Read Related Post Here: Ninth Circuit Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

After paying private school tuition, $75,000 dollars in legal fees, and a five year battle with the school district the family eventually prevailed at the district court level in Tennessee. The District Court ruled that a self-contained class is more restrictive than necessary, but that the family would not receive reimbursement for the private Montessori School.

Then Hamilton County Schools filed an appeal to the Sixth Circuit Court of Federal Appeals. “They have no ground to land on, but it allows them to delay reimbursement of our legal fees. They just look vindictive and have spent a lot of taxpayer money just to violate the law. We finally decided to cross appeal for reimbursement of the Montessori school private tuition,” Deborah explains.

Now the Sixth Circuit has agreed to hear oral arguments on July 26th. Luka’s attorney is confident, but there is a risk that the Appeals Court could uphold the lower court decisions under IDEA, ADA and Section 504 but still deny any reimbursement or compensatory education. “This would have a ‘chilling effect’ that prevents families and attorneys from pursuing these cases because there are no consequences. We would just hate that,” Deborah says. Any decision would create precedent in the states of Tennessee, Kentucky, Ohio, and Michigan.

15-year-old Luka

The Supreme Court of the United States ruled that families can be reimbursed for private school tuition if the public school IEP was found to be inappropriate, and if the private school placement is deemed to be the most appropriate available option (School Committee of the Town of Burlington v.Department of Education of Massachusetts). “The District Judge even stated Luka made progress at the Montessori School, and he ruled the public school was inappropriate. I think he knew there was a clear violation, but just didn’t want to penalize the school district by making them pay for the private school tuition,” Deborah explains.

Read Related Post Here: 7 Research Studies You Can Use at Your Child’s Next IEP Meeting to Win the Fight for Inclusion

“What has discouraged and flummoxed me most has been the willingness of school systems to spend more than a MILLION DOLLARS and three to ten years fighting to deny ONE STUDENT with an appropriate education! We weren’t asking for any service that the school doesn’t already provide other students. We weren’t asking for any unique locations or times. We just wanted accommodations and modifications in the regular education classroom. With the amount of money the school system has wasted in legal expenses to-date, every teacher in the district could have received multi-day training in providing accommodations and modifications every single year (into perpetuity) AND paid for the most expensive private school in our state through Luka’s graduation! What sense does that make?! Instead a million dollars will be spent and not a single child will be educated with those funds,” Deborah laments.

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.