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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

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3 Words That Will Transform Your Next IEP Meeting

I’ve been to numerous Individualized Education Plan (IEP) meetings as a parent, and at the end of each one the school counselor hands me a little booklet. Inside are parents’ procedural safeguards under the Individuals with Disabilities Education Act (IDEA). Do you think I ever read that tiny book?

My son is JUST in preschool, I explained to myself. I’m a former educator with a Master’s Degree (like it mattered). I don’t need to read that book. I’ll look up specific questions if I have them, as I tossed it into the trash. It wasn’t until I started a year-long Special Education Advocacy Training through the Council of Parent Attorneys and Advocates that I realized the importance of the booklet and 3 words found inside.

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

I learned that we parents can actually wield a lot of power at the IEP table. It often doesn’t feel like it. Most of the time it feels like the story of David and Goliath; me being the former and the cadre of school officials being the latter. But when things get hot, often parents only need to use 3 words: PRIOR WRITTEN NOTICE.

Parents often think they can shutdown an IEP meeting by refusing to sign the actual IEP. In most states, failure to sign means nothing. In the worst case scenario, an IEP immediately takes effect if you DON’T sign. Your signature doesn’t hold as much weight as you might think. And you can ALWAY revoke your signature… it’s not a permanent thing.

Instead, try using the phrase “prior written notice,” if you disagree with a specific aspect of the IEP process. Prior Written Notice (PWN) means that when a school district adds, changes, or denies educational services to your child, they must explain to the parent in WRITING why the services are being added, changed, or denied. Now, that’s permanent. If the school district is denying your services, they most likely will NOT provide you prior written notice voluntarily – YOU WILL HAVE TO ASK THEM TO DO IT! If you request something be added to your child’s IEP, likely you’ll need to make that request in writing and ask for written acceptance or denial of the request in the PWN.

Read Related Post Here: 3 Steps to Get Organized For Your Next IEP Meeting

This came in handy when my own son wasn’t even working on a functional communication goal we had set six months prior. I asked at Parent-Teacher Conference why the goal had yet to be addressed. The speech pathologist and teacher said they still had time. I argued in person and then via email for more speech time in the classroom to work on the skill. They politely pushed back. Then I called a meeting and used those 3 magic words, along with presenting research to make my case for more time.

Suddenly the IEP team took the matter more seriously. We walked out of the IEP meeting that day with more than double the speech time in the classroom. I was actually shocked by the lack of pushback after just threatening the use of “prior written notice” and presenting research. I was creating a paper trail of possible denial of services, and the school didn’t want that.

I can’t emphasize enough how important it is to know your rights under IDEA. Next time your at your child’s IEP meeting and they ask you if you’d like a copy of your procedural safeguards, say “Yes! I like to reread it often.” The tone of your meeting might just change right then and there.

Have you ever read the procedural safeguards booklet? Are there any times you have requested “prior written notice,” or now wish you had? Tell me about your journey below.

Learn more about Prior Written Notice and your procedural safeguards here.

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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.

 

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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.

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Everything is Still Possible

In three short weeks my first born sons’ will start kindergarten. As I prepare to send them out into the world, I am convinced that EVERYTHING IS STILL POSSIBLE.

Isn’t that what kindergarten is about, after all? By their very nature, kindergarteners are self-confident, adaptable, curious, eager to learn, and for them everything is still possible. Look at those boys! Both are the very essence of what a kindergartner should be. What a refreshing way to live!

Read Related Post: Enjoying the Quiet Before the Storm

When I became pregnant with my twin boys I had the same optimistic outlook, but 35.5 weeks later as I held them it seemed none of my dreams were still possible. As my sons’ birth story unfolded, I allowed the world’s perception of an intellectual disability envelope me. All the can nots and will nots strangled me in that moment. I could not see past Troy’s disability. I had forgotten all I had learned from dear Sister Immaculata in kindergarten: that everything is still possible.

It’s taken 5 years of preparation to believe everything truly is still possible: That’s 3 preschool teachers, 3 pediatricians, 5 specialists, 23 therapists, 208 hours of therapy to learn to walk, 520 hours to learn to write letters and cut with scissors, 520 hours to learn to jump and ride a trike, 650 hours to learn to speak in short phrases, 850 hours of advocacy training, 2,737.5 hours to potty train (this is probably an underestimate), and countless sleepless nights.

You might wonder how I could believe this, against these odds. But it’s these very odds that make me believe everything is still possible. Troy is amazing in his tenacity, adaptability, and hard work, and he comes by it honestly. Although Troy has been at the center of this hard work, our whole family has been there every step of the way. Our family has always loved a good challenge. We will beat the odds, or learn and grow trying.

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

So, bring it on kindergarten! We’ve done our homework; we’re ready for you. I started this blog knowing this time would come fast. I made a bet then that my twin sons would graduate together in the year 2031, and both would have the opportunity to go to college. I’ve learned since that this is not only possible, but is happening right now. There’s over 260 college programs for students with intellectual disabilities. Self-advocates with Down syndrome are multi-million dollar business owners, international speakers, models, reality TV stars, athletes, husbands, wives, and loved family members.

I am confident now that my very unique twins can strive for the same things in life: success, independence, security, happiness, and most of all love. Everything is still possible!

School’s back! Learn how to make this catchy bio for your child’s teachers here.